DOCUMENT RESUME
ED 429 404 EC 307 144
TITLE TASH Newsletter, 1998. INSTITUTION TASH, Baltimore, MD. PUB DATE 1998-00-00 NOTE 331p.; For 1997 issues, see EC 307143. TASH was formerly The Association for Persons with Severe Handicaps. AVAILABLE FROM TASH, 29 West Susquehanna Ave., Suite 210, Baltimore, MD 21204; Tel (voice) :410-828-8274; Tel (TDD) :410-828-1306; Fax: 410-828-6706. PUB TYPE Collected Works Serials (022) Reports Descriptive (141) JOURNAL CIT TASH Newsletter; v23-24 n1-12 Dec 1997-1998 EDRS PRICE MF01/PC14 Plus Postage. DESCRIPTORS Civil Liberties; Correctional Rehabilitation; Criminology; Cultural Differences; Deinstitutionalization (of Disabled); *Disabilities; Elementary Secondary Education; Federal Legislation; Foreign Countries; Inclusive Schools; Independent Living; Individualized Programs; Labeling (of Persons); Leisure Education; Long Range Planning; Recreation; *Severe Disabilities
ABSTRACT The ten 1998 issues of the newsletter of TASH comprise this document. An issue typically contains news items, a column by the organization's executive director, reports from special interest groups, legislative testimony, conference information, and several major articles, such as the following: "A Q&A on IDEA 97 with Tom Gilhool"; "Positive Behavior Supports and IDEA"; "Highlights of the Discipline Provisions of the Individuals with Disabilities Education Act Amendments of 1997"; "1997 TASH Conference Keynote Address" (Reed Martin); "Institution Closures Continue at an Average of More than 12 per Year" (K.Charlie Lakin and others); "Fighting To Keep 'Em In" (Josie Byzek); "The Deinstitutionalization of America"(James W. Conroy); "Power Sharing between People with SubstantialDisabilities and Their Assistants" (John O'Brien and Connie Lyle O'Brien); "Teaching Students To Play" (Linda A. Heyne); "Inclusive Recreation: A Parents' Guide to Quality" (Stuart J. Schleien and John E. Rynders); "It's Summer Time! Let's Go to Camp" (Cynthia Burkhour) ;"Recreation-Human Services Partnerships: The Rural Recreation Integration Project" (Lynn Anderson and others) ;"Future Planning for Your Child Takes More than a Will"; "Current Trends in Providing Support for Families of Adults with Mental Retardation" (Tamar Heller); "Securing Self-Determination: Building the Agenda in Canada" (Michael Bach); "Wanted: People with Disabilities Involved in International Development" (Susan Sygall); "Girls and Women with Disabilities: A Global Overview" (Nora Groce); "Native American Communities--A More Inclusive Society?" (Ladonia Fowler); "My Experiences with the Criminal Justice System" (Perry Whittico wity Bonnie Shoultz); "Individuals with Significant Disabilities Who Are Victims of Crime" (James K. McAfee); "Should the Death Penalty Apply to Persons with Cognitive Disabilities: The States Must Decide" (Barbara E. Ransom and Dawn Sutton) ;"Unleash the Power" (Joyce Lipman) ;"Internet Resources Concerning People with Developmental Disabilities" (RachaelZubal and Steve Drake); "Escaping from the Label Trap" (Michael W. Smull); "Changing the News about Disability: Why We Need To and How To Do It"(Mary +++++ ED429404 Has Multi-page SFR---Level=1 +++++ Johnson); "Radical Heart, Moderate Mind: A Perspective on Inclusion" (Peter V. Paul); and "What's Wrong with the Feds?" (Mark A. Mlawer).(DB)
******************************************************************************** * Reproductions supplied by EDRS are the best that can be made * * from the original document. * ******************************************************************************** TASH NEWSLETTER
Volume 23/24 Issue Number 12/1 Dec 1997/Jan 1998 (One Issue)
and
Volume 24 Issues Numbers 2-12 1998 (9 Issues)
PERMISSION TO REPRODUCE AND U.S. DEPARTMENT OF EDUCATION DISSEMINATE THIS MATERIAL HAS Office of Educational Research and Improvement BEEN GRANTED BY EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) Vfhis document has been reproduced as received from the person or organization originating it. Newton 0 Minor changes have been made to improve reproduction quality. TO THE EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) Points of view or opinions stated in this document do not necessarily represent official OERI position or policy.
2 BEST COPY AVAILABLE rn MIN 1111111114 11111111111 01/01 11-10' - INK 1\1110 lot illo '14 %lb
1 TAM, CHAPTERS essz9,0 NEWS FROM Other activities of Colorado TASH COLORADO: include lending support to other organiza- Colorado TASH currently is tions' efforts, underwriting pilot pmjects, focusing on two major issues: providing mini-grants, and recruiting and inclusive education and community supporting its members through connections. To that end, Colorado information and referral. TASH will be co-sponsoring with Connie Christoff is Colorado PEAK Parent Center the Colorado TASH's president; Colorado Inclusion Conference Robert B. Ruggow, is the trea- February 19-21, 1998. surer; and Elizabeth Soper Hepp is For more information on the the Membership Chairperson. Other Colorado Inclusion Conference, board members of Colorado TASH are contact Peak Parent Center at Michael Hoover, Rick Keeton, and Joan (719) 531-9400. Rademacher.
TEXAS TASH Announces its upcoming state meetingon February 6-7, 1998 in August Hallat Sam Houston State University in Huntsville, Texas.
Registration is scheduled for 4 to 5 PM on Friday, February 6, followed by the welcome and plenary session by Dr. Mike Brady, former President of the Texas Chapter of TASH.
A reception will follow at the home of Sharon Lynch, current President of Texas TASHall are cordially invited to attend.
Saturday, February 7 will include a keynote address by Mike Bradyon "The Stereotypic Behavior of Special Educators." Roundtable discussions on these topics will follow:Legal Issues; Involving Families in the Assessment Process; Non-aversive Behavioral Interventions;Improving Transition Planning; and Teacher-Paraeducator Partnerships.
For more information on the meeting, contact Mary Fitzgeraldat 281-583-2285 or Sharon Lynch at 409-294-1122, or send an e-mail to: [email protected] COMING SOON: Texas TASH Webpage!! Watch for details! 4
PAGE 2 TAM Newsletter, Dee. 1997/Jan. 1998 BEST COPYAVAINEgic UPFRONT
BY MARCIE ROTH There was consensus from around the TABLE OF CONTENTS country that political reality could be UPFRONT PAGE 3 Despite permanent authorization of defined by the grassroots if the insiders IDEA Q&A WITH Tom GILHooL PAGE 5 the Individuals with Disabilities Educa- would allow the voices outside the POSITIVE BEHAVIOR SUPPORTS tion Act of 1975 (IDEA), the 105th Beltway to be heard over the din of AND IDEA PAGE 8 Congress took it upon itself to rewrite Beltway politics. TIMELINE FOR IMPLEMENTATION PAGE 11 PART C: INFANTS AND TODDLERS WITH the law that ensures a free and appropri- Despite the best efforts of many, the DISABILITIES PAGE 13 ate public education for all children. As new law was passed and on June 4th, STATE ADVISORY PANELS PAGE 15 Congress moved toward passage of their 1997 the Individuals with Disabilities DISCRETIONARY PROGRAMS new law, many families and advocates Education Act of 1997 (IDEA '97) was OF IDEA '97 PAGE 16 from across the country stood together signed into law. IDEA '97 INFORMATIONAL and, in a unified voice, said "IDEA is a RESOURCES PAGES 18, 23 This edition of the TASH Newsletter IDEA '97 AND EVALUATIONS, ELIGIBILITY, good law. Leave IDEA alone! Adequately focuses on various aspects of the IEPs AND PLACEMENTS PAGE 19 fund it and then monitor and enforce it. Individuals with Disabilities Education HIGHLIGHTS OF IDEA '97's DISCIPLINE Don't change it, make it work!" Act of 1997 (IDEA '97). Unlike most PROVISIONS PAGE 24 The battle was waged on a number editions of the Newsletter, this one came DISCIPLINARY GUIDANCE MEMORANDUM FROM U.S. DEPT. OF EDUCATION PAGE 28 of fronts. Despite opposition from together very slowly, over a period of six RESPONSE TO U.S. DEPT OF EDUCATION numerous grassroots advocacy and months. It was not intended to be DISCIPLINARY GUIDANCE parent organizations, many others among the first pieces off the presses, MEMORANDUM PAGE 30 indicated willingness to compromise in but a careful and responsible compila- the shadow of what was described by tion of some of the most useful informa- some to be "political reality". Parents tion available. There is already quite a TASH (formerly The Association for Per- and other stakeholders from across the bit of information in print, and plenty sons with Severe Handicaps) is an inter- country called on insiders to step aside of misinterpretation as well. This is not national advocacy association of people and allow them to speak for themselves. continued on page 4 with disabilities, their family members, other advocates and people who work in the disability field. TASH actively pro- motes the full inclusion and participation of Iffft. of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 flu---iv WHOM DO I CONTACT??4.111.1: or phone (410) 828-8274, ext. 105 or For issues of policy, chapter or committee support, or general e-mail: [email protected]. concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected]
MISSION STATEMENT For information on the conference, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assis- tance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] OTASH For questions about conference registration or exhibiting call: Stretching the boundaries of what is possible - Rose Holsey, (410) 828-TASH, Ext. 100 or [email protected] Building communities in which no one is For information on government affairs or fundraisinWdevelopment, call: segregated and everyone belongs; Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Forging newalliancesthat embrace diversity; For information on membership, permission and reprints, newsletter Advocating for opportunities and rights; submissions or advertising, or publication/video sales, call: Priscilla New- ton, Director of Member Services, at (410) 828-TASH, Ext. 102, Eradicating injustices and inequities; e-mail: [email protected] Supporting research and disseminating For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, knowledge and information; at (415) 338-6230, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) ^I 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promotingexcellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. ,SEST COn/UMW PAGE 3 TASH Newsletter, Dee. 1997/Jan. 1998 UPFRONT continued from page 3 safeguards for students and the entitled "Initial Guidance Regarding rights of parents to participate in REMOVAL [emphasis added] of surprising. In fact, one of the argu- educational decision making (page Children with Disabilities from their ments for leaving IDEA alone was to 19). Current Placement." avoid the inevitable period of interpret- The new law says, most notably, ing, reinterpreting, and challenging the If you wonder how Part H was able that a free and appropriate public interpretations of others. Sadly, after to slip so easily into the C position, it is education must be provided, and access 22 years of failed efforts to get the law because the previous layout of the to the general curriculum assured. adequately enforced, all stakeholders Discretionary Programs (the elements Sadly, this first interpretation attempts have diverted efforts away from a focus that really make the law work) have to soften this requirement. on educating the students to one of been condensed from 14 separate We've followed this document with understanding the new law. Putting the authorities to a tidy seven. They have a response letter from a number of the changes into practice will require been given the Part D position and top legal experts from across the significant additional efforts. Many are retitled "National Activities to Improve country (page 30). Their response also concerned that the inevitable legal Education of Children with Disabili- clarifies expectations and delivers a challenges are bound to delay and ties." reminder to all that the road to success confound the delivery of educational Did you think that the law changed in our schools will be paved with services even further. the moment the President's ink dried adequate support for promising back on June 4th? Well, it did in some educational practices, including an Inside this edition of the areas, and hasn't yet in others. We've improved system of personnel develop- Newsletter you'll find: included a Timeline for Implementation ment and utilization of positive behav- A candid Q & A with Tom Gilhool (page 11) to help our readers keep ioral supports. (page 5). This article will bring you track. Presumably, the parts that are The article on discipline, "High- up to speed about some of the not yet effective are still being imple- lights of the Discipline Provisions of the most notable elements of IDEA '97, mented in good faith, to the best of the Individuals with Disabilities Education while describing the winding path ability of every educational entity. Act of 1997," (page 24) comes from the that led to the passage of the new The biggest battles and the hardest Center for Law and Education and is law. This piece effectively captures moments for all during the past three "hot off the press." It is the article that the powerful impact of grassroots years were due to the challenging issues gives parents, advocates and educators advocacy of discipline and school safety Some- the facts on discipline as they are where along the way, children with written in the new law. Remember Part H? The portion of disabilities, classroom disruption and The changes in the law require the the law that set out the require- school safety came to be considered by writing of new regulations. Draft ments for educational services for some as parts of the same discussion. regulations (the "rules") were published Infants and Toddlers with Disabili- Despite the lack of any evidence that on October 22, 1997 and after a 90-day ties? It's been renamed Part C and children with disabilities are a demon- period of public comment, final with the invaluable assistance of strable factor in the problems with regulations will be issued, probably the National Information Center disruption and safety in our schools, sometime next summer. Then begins for Children and Youth with the disciplining of students with the next chapter in the process of Disabilities, we've included a brief disabilities was a persistent theme. We educating the 5.8 million students with list of the notable changes begin- have included a memorandum and a disabilities in the United States. ning on page 13. letter that deal with discipline. Information on where to obtain a copy The memo is from Judy Heumann, of the draft regulations, and who to Information from the U.S. Depart- Assistant Secretary of the US Depart- contact if you are interested in com- ment of Education, Office of ment of Education, Office of Special menting on the proposed regulations, Special Education Programs Education and Rehabilitative Services can be found on page 23. (OSEP) explaining the requirement (OSERS) and Tom Hehir, Director of We hope you find this edition of the that State Advisory Panels include the US Office of Special Education TASH Newsletter to be useful. Now is the representation from a majority of Programs (OSEP) (page 28). While this time to get smart about the new law. individuals with disabilities and "policy guidance letter" no longer Our work has only just begun. Contact parents of children with disabilities carries the force of law (an IDEA '97 Marcie Roth, TASH's Director of Govern- (page 15). change), we are disappointed with the mental Affairs and Public Policy at x104 Department of Education's attempt to if you have comments or questions An excerpt from an article written interpret the straightforward language pertaining to any of the information by Rud Turnbull of the Beach of the law. It is also disappointing that contained in this Newsletter. Center at the University of Kansas the very first communication from that highlights the significant new them after passage of IDEA '976
PAGE 4 TASH Newsletter, Dec.1997/Jan. 1998 IDEA A Q&AonIDEA '97 with Tom Gilhool
among the newly emphasized provisions is the requirement that all school districts TASH gratefully acknowledges the must disseminate among all educators assistance and support of the (regular and special), supporting person- Autism National Committee in Thomas K. Gilhool is well nel, and administrators information on allowing us to reprint substantial known as the mastermind promising educational practices systems portions of this exclusive interview. of the PARC Consent Decree, of teaching and learning that have a record To obtain copies of the full article, the landmark federal court of success and indeed must adopt these contact the Autism National practices. This requirement of the Act is Committee at 610-649-9139. decision which granted Pennsylvania children with preserved in Section 612(a)(14), and by the creation of a new School Improvement mental retardation the right Program for which states initially will The following is a candid question to public education and laid compete. and answer session with Tom Second, the new Act requires that Gilhool. This article will bring you the foundation on which education programs be designed so that up to speed about some of the most our first national bill, PL 94- children with disabilities make real notable elements of IDEA '97, while 142, was subsequently progress in the general education curricu- describing the winding path that led to the lum. passage of the new law. This piece based. Mr. Gilhool's careful Third, states and districts are in- effectively captures the powerful impact of wordsmithing was vital in structed to bring the shape and the results grassroots advocacy. shaping the language of of the education of children with disabili- that national legislation ties into full accord with school reform Question: Now that the IDEA has finally activities now common among all the been reauthorized, we're hearing varied back in 1975. In 1996-97, states. Two immediate consequences of interpretations of what the changes in this he was back in Washington this requirement are explicit in the Act: law will mean for our children. Some are tohelppreventthe states must set hard, concrete, system-wide calling it a greatly improved law, while threatened erosion of our objectives for children with disabilities others are saying that our rights have been which states and school districts will meet, eroded. What changes have actually children's education rights such as graduation rates, rates of graduates occurred, and what impact are they likely and, wherever possible, to going on to college, rates of graduates to have? strengthen the language of achieving competitive employment, and so theIndividualswith forth. Furthermore, in the Act and the Tom Gilhool: There is some truth in every Committee Reports it is stated that, beyond one of the diverse characterizations of the Disabilities Education Act those specifics just mentioned, the states new IDEA, which contains a strong side as (IDEA). (with participation from all of us) must well as some potential threats. choose objectives to be measured annually and publicly, and reported to the Secretary On the strong side, the Act itself and of Education of the U.S. This represents a the Committee Reports which accompany lovely advance in accountability! it make very clear the continuing and In the area of accountability, the Act strengthened commitment to the integra- tion. In the markup and in the Committee also requires that states include children tion imperative. In this regard, every school Reports themselves you see frequently the with disabilities in those assessment district must spare no effort to secure the chairs of the House and Senate Commit- programs which states run for children effective and appropriate education of tees, as well as the major sponsors of the who do not have disabilities. Some of every child in the regular or general Act, saying that the primary purpose of all these assessments are longstanding, some education classroom. It is also worth these amendments is to go beyond mere of new vintage arising from the school noting that the reports of both the House access to the schools and secure for every reform movement, but the primary and Committee and Senate Committee are child an education that actually yields presumptive requirement is that all almost verbatim the same, giving them a successful educational results. children will participate in assessment, special joint weight. To secure real educational results, with appropriate accommodations. For Also on the strong side, this Act there are several important new provisions example, this will cause us to look to the emphasizes educational results, equating and a renewed emphasis on several successful education with effective educa- original, long-standing provisions. Chief continued on page 6
PA 5 TASCi8HINewsletter, Dee. 1997/Jan. 1998 IDEA
An IDEA CAA With Tom Gilhool now written so that services must be in Section 615(k) of the bill. Two are continued from page 5 delivered. Battles between state agencies straightforward: they provide that children over who will deliver can't delay delivery; who knowingly possess dangerous Education Testing Service for ways agencies must come together and Tide XIX weapons in school and children who children with disabilities can participate in must ultimately pay. possess drugs may be placed in an standard current assessment tests such as appropriate interim alternative educational scholastic achievement tests, and to setting, for not more than 45 days. develop alternative assessment schemes "Dangerous weapons" and "drugs" have which are equally serious and measure real The requirements fairly well-bounded, tight definitions. objective educational achievement. They The two provisions we must be are to be administered regularly, and for integration and for watchful about are in 615(k)(2) and reported publicly. honest-to-goodness 615(k)(4). The first says that any child These two requirements - for integra- found by the hearing officer (not the court, tion and for an honest-to-goodness educational results as was previously the case) to be "substan- educational undertaking which will yield are at the heart of the tially likely to injure himself or others" results are the heart of the guarantees may be transferred by the school district to to our children, and are strengthened in guarantees to an appropriate interim alternative educa- lovely ways by this Act. our children. tional placement, and that in such a case parents will have no "stay put rights" (i.e. Question: We're relieved that integration veto power over the proposed move while and real education results are prominent the relevant meetings and hearings occur). in the Act. Are there other provisions of Any child found to violate a provision of Question: The cornerstone of the IDEA which we should be aware? the school's discipline code may also be has always been that ALL children with designated to be transferred to an alterna- disabilities were entitled to a free and Tom Gilhool: Two other changes on the tive setting, but in that case "stay put appropriate public education (FAPE). useful side are worth mentioning. The rights" hold. Those are two places at What became of the threat raised during State Advisory Panels, which have been which the Act threatens. the 104th Congress, that "cessation of required for some time, now must be services" could become possible for some composed in their majority of parents of Question: What protections and require- children with disabilities? people with disabilities or of people with ments can families invoke if the district disabilities themselves. The authority of tries to change their child's placement on Tom Gilhool: Here we have both good the Panels to see all data that comes to the the grounds that he or she is substantially and bad news. The most significant state IDEA compliance reviews, civil likely to cause injury? accomplishment of the reauthorization rights compliance reviews, and so forth process which culminated in David is guaranteed in the statute. These Panels Tom Gilhool: Any alternative placement is Hoppe's conversations with all involved advise the state school officer and the U. S. strongly hedged in by the Act itself.It parties over this winter and spring is that Secretary of Education with respect to the must be one where the child can make 'cessation of services" has been soundly performance of each state, an authority progress in the general curriculum, where defeated! (David Hoppe is Chief of Staff to confirmed and strengthened in the Act. the I.E.P. can be carried out, and if Senate Leader Trent Lott (R-Miss), and the This forum will now be all the more maladaptive behavior is involved, a father of a young child with Down Syndrome.) useful. professionally acceptable positive behavior The Act firmly and expressly provides that The second useful provision concerns plan must be carried out, just as required education services may not be interrupted Title XIX. For some time the Act has in the regular education setting. The for any child with disabilities. Provisions made clear that services required by the alternative placement must be "appropri- that may have put those children with IEP which are covered by Title XIX, either ate," which according to the Supreme disabilities who were regarded by school because the family is of low income or Court means "reasonably calculated to personnel as disruptive into the shade or because the child is eligible for SSI, can yield real educational benefits to the the outer darkness were also beaten. and should be paid for by Title XIX funds. child," and most courts of appeal have said The Consensus Bill of June 1996 This Act makes it brilliantly, beautifully, that the requirement of appropriateness would have repealed the "all" from and usefully clear that the state must get its includes as well the integration require- "education for all" and vitiated zero reject. head together to use Title XIX for the ment and the other central requirements This bill had actually been agreed to by related services needed by each eligible of the Act. most folks inside the beltway, and passed child. We have an excellent opportunity In general, the concept of alternative by the House, before a rebellion in the to increase availability to our children of a placement is very limited by their trigger field took hold over the summer of 1996 full range of supports, assistance, and and by the nature of the education and was successful. That's the good news. wrap-around services important for our The threatening parts of the Act are all children's school success. The statute is 8 continued on page 7 PAGE 6 TASH Newsletter, Dec. 1997/Jan. 1998 IDEA
An IDEA Q&A With Tom Gilhool Intervention services are to be delivered in continued from page 6 natural environments, i.e. settings in which the child would be served if he or Whenever a placement itself. The evidentiary standard she did not have a disability, such as a for "substantially likely to injure self or neighborhood nursery school. Those district acts to yank others" is very high, and the Act requires agencies doing segregated Early Interven- a child, it's an that proof must be very strong, "beyond a tion are in trouble. This articulation of preponderance of the evidence." It is principles for the very young child further indictment of the enormously significant that shortly after strengthens the integration component of district, not the child! the Act was passed the president of one of the Act, which overall contains strong the school principals associations, which words and strong ratification by both were deeply involved in introducing these Committee Reports supporting education new provisions, commented that the Act's with non-disabled peers. Tom Gilhool: These past two years requirements for alternative placements demonstrate to us that prejudice, bigotry, Question: If any of our families are are so high that very few children will be and stereotype are alive in the Congress adversely affected by changes to the IDEA, subject to such assignments and to some degree alive in the land, and such as those concerning weapons, drugs, The requirements for alternative particularly in the schools. The segrega- and in particular "substantial likelihood to placements codify the standards estab- tion of people with disabilities was a cause injury to self or others," what can lished by the Supreme Court in Honig v. practice imposed by statutes by all states at our advocacy organizations do to help? Doe. The Congressional Committee the turn of century, and justified as a need Reports leave no doubt that the strict to . avoid the "menace of the feeble- Tom Gilhool: That's a really important standards of Honig, now govern. They are minded." This meant excluding children question. In my comments to the Feds on very strong. The courts have almost never from schools and consigning them to the IDEA regulations, which are now in allowed districts to remove a child to segregated institutions for life. The 1975 preparation, I have strongly suggested that alternative placement under Honig Education Act was a repudiation of that Federal regulations should require that for standards. pattern of bigotry by Congress and by the weapons, drugs, and "likelihood to cause The so-called "Gang of Sif - the nation. To understand its meaning, it injurythere should be regular reporting National School Boards Association, the must be seen in relation to our entire civil by districts to states and states to the Feds National Education Association, the rights movement, to the search for equality of any invocations of these provisions of American Federation of Teachers, the and justice by racial and ethnic groups Section 615, as well as a description of the American Association of School Adminis- and by women as well as by people with alternative placements proposed. trators, the National Association of disabilities. Secondary School Principals, and the Short of that and even with it it is very important for us to track it. Our National Association of Elementary School Question: Many families found this IDEA advocacy organizations must track the Principals sought "cessation of services' reauthorization confusing. Various impact of these provisions by maintaining during this reauthorization. Far from advocacy groups presented conflicting a close and effective network. Through the accomplishing that goal, one of their analyses of proposed changes and different coming fall and winter we must tighten representatives was quoted as saying that opinions about whether to compromise or our advocacy relations and networks, and "None of us any longer believes that delay. Why did our organizations have work together with law centers and law homebound instruction is legal." such difficulty finding a common voice? I believe this is a correct interpreta- projects across the nation to maintain a score card. We must work to mitigate the tion of the Act, with its fresh emphasis on Tom Gilhool: Until the grassroots down side and to drive the high side. integration, on well-designed behavior revolution occurred, which was well into This is an Act which requires imple- plans, and on extending to the child with the reauthorization process, it was mentation! All schools must come to disabilities the benefit of the general confusing. At a time when the American know what the successful schools already education curriculum and of the duration commitment to equal citizenship is so know and are implementing. Whenever a and scope of education received by those strongly under attack, it becomes increas- district acts to yank a child, it is a sure who are not disabled. This quite plainly ingly difficult for anyone to make judg- measure that the district does not know means no more handing out a couple ments about what is possible, what is the promising, effective education practices hours a day or a week of homebound best we can get, and what's not. a knowledge required by the Act. It's an instruction, since a positive behavior plan In the summer of '96 the despair in indictment of the district, not the child! is necessarily social and can't be carried Washington was so overwhelming that Many districts are doing a great job and out if the child is isolated! compromises were made in good faith. The emphasis on education in we can look around to these success The judgment of advocates "inside the stories to prove that it can be done. All integrated, typical settings is underscored beltway" was that compromise was the by the new emphasis in Part C (formerly districts have the obligation to get their Part H) of the Act, which says that Early knowledge and practice up to date. continued on page 14
PAGE 7 TAM Newsletter, Dec. 1997/Jan. 1998 9 POSITIVE BEHAVIOR SUPPORTS Positive Behavior Supports and IDEA
f ever there were a place and time for Accommodations--that is to say, positive celebration, it is here and now. We behavioral interventions and supports 1gather to celebrate a multitude of --are warranted in the school environ- victories related to students with ment whenever they can reduce an challenging behaviors. As part of our individual's challenging behavior and celebration, we proudly review our own enhance his or her capacities to learn. history and our contributions to Individuals with Disabilities Education 5. These provisions symbolize the Act (IDEA), especially as that law relates victory of law over illegality For years, to positive behavioral support (PBS). But many of us have argued that a large we must temper our celebration and body of law not just IDEA but other surround it with caution and zeal. law as well, particularly constitutional The immediate cause for our law requires the state to use only the celebration is the reauthorization of least restrictive and most positive IDEA and the enactment of two key interventions. IDEA enacts that argu- provisions related to positive behavioral ment. support. One provision requires the IEP team of a student whose behavior 6. These provisions extend into disrupts his or her learning or other federal education law and thereby into students' learning to consider, when ing positive behavioral interventions, state law and local practice the legal appropriate, strategies, including IDEA creates at least a rebuttable doctrines of the right to treatment and, positive behavioral interventions, to presumption in favor of those kinds of with it, the right to substantive due address the impeding behavior. For me, interventions. Put in another way, it process. Actually and metaphorically, the basic question, and one that schools creates at least a rebuttable presumption they free students of all sorts of physical will be hard pressed to avoid, is this: against nonpositive, or aversive, inter- and psychological restraints on their When is it not appropriate for schools to ventions. liberties. consider PBS when behavior impedes learning? 3. These provisions assert a funda- 7. These provisions strengthen The second provision relates to mental democratic value, which is that IDEAs seamlessness. The principle of students who have been disciplined. It the only proper focus of government is zero reject is buttressed by the discipline requires the Local Educational Agency on the individual. The state exists solely provisions and PBS's role there; the (LEA) to conduct a functional behavioral to serve the interests of the individual; principle of nondiscriminatory evalua- assessment and implement a behavioral the individual's claims are the ends, the tion is enhanced by the requirement for intervention if it has not already done ultimate objectives, of, and the bedrock functional behavioral assessment; and so, or to review and, if appropriate, justifications for, the state. By declaring the principle of appropriate education is revise the student's behavioral interven- that schools must use functional fortified by the requirement for PBS tion plan if the student already has such behavioral assessments and positive whenever behavior impedes learning. a plan. behavioral interventions, IDEA asserts Given these provisions, why is that it is the individual's development 8. Finally, these provisions also celebration warranted, at least so far as that is the core value. Stated in the represent the victory of morality over IDEA is concerned? alternative, IDEA holds that the conve- pure technology As Anne Donne llan so nience of educators and the control of poetically argued many years ago, 1. These provisions mark the students, too often manifest by indefen- technology without values breeds merger of priests and princes. That is to sible restraints and aversives, are not the Nazism and its ilk, but values without say, they consolidate the knowledge of proper ends or goals of the state. technology asks us all to wait endlessly the priests--the research for a non-appearing Godot. In IDEA, community--with the power of the 4. These provisions codify the positive technology combines with the princes --the policy makers. principle of "dual accommodations" that moral value of human development. is codified by the Americans with 2. These provisions are emblematic Disability Act and Sec. 504 and that also As if all of these reasons were not of the victory of positive interventions is so ably represented in the 1992 AAMR sufficient cause for us to celebrate, there over aversive interventions. By specify- book redefining mental retardation. continued on page 9 1 0 PAGE 8 TASH Newsletter, Dec. 1997/Jan. 1998 POSITIVE BEHAVIOR SUPPORTS
Positive Behavior Supports behaviors and on positive/appropriate general curriculum and community and IDEA behaviors. But that focus, though inclusion to which our students have a continued from page 8 indispensable, is not sufficient. It is also legal right and moral claim. We have to necessary to see PBS as the vehicle for press for change in our academies, is yet another. It is TASH's own history, systems-change and policy reform in clinics, and communities. one that perhaps began with the education (and elsewhere), for environ- publication in 1986 of a TASH mono- mental alterations, and for training not 6. We need to extend the PBS graph that I was privileged to coauthor. just of the student but of everyone who approach beyond federal and state In that monograph TASH railed against is in the student's life. We need to special education law General education aversives and cried out for nonaversive, extend the meaning of PBS so that it will law and practice can benefit from this positive interventions. TASH's own more change policy, the entire context of the approach. So, too, can states' mental recent history, namely, its bulldogged school, and professionals' conduct, not health and developmental disabilities but frustrating battle in the B.R.I. case just the student's behavior. codes. As the B.R.I. case teaches, we and its important contribution in IDEAs need to reform those laws, too. reauthorization, also gives us reason to 3. We must acknowledge that many doff our hats to each other. Without families, educators, researchers, and 7. Finally, we have to assure that TASH, PBS would not be where it is providers are still wedded to the TASH and its allied organizations are today increasingly outdated technology of ever vigilant to war against the old But, enough of celebration. It is applied behavior analysis (ABA). technologies and to advance the cause of time, now, to take stock of where we are Although ABA has much to contribute to PBS. We need energy and strategies to and what else we need to do to assure functional assessments and positive make a sustained and significant that positive behavioral supports supports, it is, by itself, a limiting difference. The initial battle-to improve become more than formal, written law concept and intervention. It does not IDEA and to codify PBS--is over and that they become the law on the speak to the whole student/whole life won; the implementation battle has not street, the practice in the classroom. reality that families and students face. even begun in earnest. The development And it does not sufficiently lead to of a Model State law or technical 1. We must reject the notion, set out lifestyle changes that result in families assistance guideline, now underway at in OSEP's explanation of the discipline and students having an enviable life. We the Beach Center on Families and amendments, that IDEA is correct in must insist on the primacy of PBS over Disability, is part of the implementation "balancing" the rights of students with ABA and on the ultimate utility of PBS in effort. We must be ever watchful, always challenging and discipline provoking helping people "get a life." diligent. behaviors against the interests and rights of other students and staff. The "balanc- 4. Technologies and strategies aside, Let me close by thanking all of you ing" argument is wickedly seductive, but we have to be vigilant against the who were responsible, in any way, for we should not succumb to it. Instead, approach that my colleague Doug Guess what we celebrate today And let me also we must argue that, if PBS is embedded (and others) have labelled the "fix it" caution each of us, myself included, by into practice for all students who might approach. PBS is superior to ABA, but it quoting from Shakespeare's Julius possibly need it, then the incidence of too will not be the panacea; there is still Caesar: challenging behaviors and disciplinary too much that we do not understand "There is a tide in the affairs of men sanctions will be diminished and about human behavior, how environ- which, taken at the flood, leads on to school-wide safety will be increased, all ments and policies shape behavior, and victory; omitted, all the voyages of our to the benefit of everyone in school. the interactions between behavior, lives are spent in shallows and misery. That is what we learn from the work of environment, and human biology. We We are now upon such a tide. " such people as Rob Homer. There is no need to "sell" PBS, but we should not Indeed we are! We created it, and ground for "balancing". We must assert oversell it as a modern elixir. now the only questions remaining are that PBS is the safeguard against disci- these: How large a tide is it, how far will pline, a preventive technique, and that 5. We must be candid and admit it carry us, and who will make sure that all schools and many more students than that state laws and local practices and the tide will be overwhelming and just those with challenging or impeding preservice training in our institutions of permanent? behaviors should benefit from it. We higher education and in parent training I am sure that each of us will answer need to spread and embed PBS. and information centers lag behind that question in our own ways, always IDEA and its PBS provisions. There is positively, and that we will all persevere 2. We must recognize that even our yet so much to do to create a and prevail in our noble cause. I know I well advanced conceptualization of PBS PBS-competent cadre of general and will. I know you will, too. is elementary It is of course necessary to special educators, other professionals, focus on the student, on impeding and families, and to enable them to put PBS into place as an integral part of the ii PAGE 9 TAM Newsletter, Dee. 1997/Jan. 1998 Call for Nominations: Editor of JASH
The TASH Publications Committee 2. Previous authorship experience and substantial pub- The Journal of TH Eis currently beginning a search for lication record in JASH and other journals. ASSOCIATION FOR PERSONSthe new Editor of JASH. The term 3. Commitment to TASH policies and ideals. WITH SEVEREof service for the Editor is three 4. Record of leadership in the area of severe disability, HANDICAPSyears. Nominations or direct appli- both within and outside of TASH. cationsareinvited from TASH 5. Openness: willingness to consider new directions members with the experience and and innovative practices in the context of maintain- expertise described below. We particularly encourage ing the Journal's commitment to excellence and applicationsfromtraditionallyunderrepresented scholarship. groups including women, persons with disabilities, 6. Research skills: expertise in one or more of the and persons from racial or ethnic minorities. The fol- research methods commonly used in the area of lowing criteria will be used to select a new Editor for severe disability, including within-subject designs, the journal: qualitative methods, and/or large-N descriptive or 1. Previous editorial experience as an Editor or Asso- experimental methods. 7. General organizational skills: evidence of ability to ciate Editor of a scholarly journal in the field; meet important deadlines and organize major tasks.
Call for Nominees to Serve: JASH Editor Selection Committee
We invite interested TASH members to apply to serve tee to review and evaluate applications for the Editor as a member-at-large for the subcommittee that has position. Nominations of individuals with disabili- been formed to make recommendations to the TASH ties, family members of persons with disabilities and Board for selection of a new Editor of JASH. The direct service providers are particularly welcome. members-at-large will work with the Search Commit-
Submit nominations to: Dianne Ferguson, Chair TASH Publications Operating Committee Schools Project, STP 1235 University of Oregon Eugene, OR 97403. FAX: 541-346-5517 email: [email protected]
12
PAGE 10 TAM Newsletter, Dee. 1997/Jan. 1998 IMPLEMENTATION TIMELINE
This Timeline for Implementation of IDEA '97, is provided to help readers keep track of the effective date(s) for certain parts of the legislation.
TIME LINE FOR IMPLEMENTATION OF IDEA 1997 Effective dates of the amended provisions of the IDEA:
Part A [General Provisions, including Definitions]
Part B, except as provided below [Assistance to States Program]
Effective October 1, 1997:
Part D, except as provided below [State Improvement Grants and IDEA discretionary programs Parts C, E, F, and G of the current IDEA are repealed effective October 1, 1997. NOTE, however: The Act gives the Secretary the authority to use funds appropriated under the new Part D to make continuation awards for projects funded under section 618 and Parts C through G of the IDEA as in effect on Septem- ber 30, 1997.] Effective January 1, 1998:
Section 661(g)(1) and (2) [Requirements for the Secretary to establish and use a standing panel and peer review panels for reviewing applications under Subpart 2 of Part D (IDEA discretionary programs)]
Effective July 1, 1998:
Section 612(a)(4) [IEPState eligibility conditionthe IEP requirements of the IDEA as in effect before enactment of the IDEA Amendments
of 1997 remain in effect until July,1998]
Section 612(a)(14) [CSPD - State eligibility conditionthe CSPD requirements of the IDEA as in effect before enactment of the IDEA Amend- ments of 1997 remain in effect until July 1, 1998]
Section 612(a)(16) [Performance Goals and IndicatorsState eligibility condition]
Section 614(d)(1)-(5) [IEP definitions; requirement that programs be in effect; development of IEPs; review and revision of IEPs; and failure to meet transition objectivesthe IEP requirements of the IDEA as in effect before enactment of the IDEA Amendments of 1997 remain in effect until July 1, 1998]
BEST COPY AVAILLi'c 13 PAGE 11 TASH Newsletter, Dec. 1997/Jan. 1998 NOVEMBER/DECEMBER 1997
NCLUSION TIME fOR CHILDREN AND YOUTH WITH DISABILITIES S Inclusion Times for Children and Youth with Disabilities No single issue in school reform has created more controversy or continuing debate than the inclusion of children and youth with disabilities in regular education. To assist professionals and parents in obtaining critical information, National Professional Resources, Inc. provides you with the latest information! Published 5 times per year, Inclusion Times provides the latest information on: best practices and model programs Federal and state initiatives and policies articles on parent and teacher perspectives conferences/activities information on how to obtain books, videos, and other resources related to inclusion, and much more! 1 This newsletter is required reading for all individuals interested kti in a "balanced" presentation on the issues surrounding this 1 ' controversial movement. 1'111 11. Newsletter, 12 pages, Order #IN-TAS One Year (5 issues) $39.95 IMPACT Two Years (10 issues) $69.95 FUTURE! Presentation by, Bruce A. Buehler, M.D.
To celebrate its fourth year of publication, we are providing you with an opportunity to subscribe for 2 years for $69.95 and receive absolutely FREE the 43 minute video, Who Are the Children Being Born Today: Impact on the Future. This video has been used in teacher training and staff development throughout the country. "Dr. Buehler presents a 15 week course in 43 minutes...Excellent!" Seymour Samuels, Ed.D. This offer expires Jan. 31, 1998 DIRECTOR EMERITUS, SPECIAL EDUCATION IN LEADERSHIP TRAINING ACADEMY
. . ;II, I ii I 1 I 1 III..I .11 II 11 I 1 1 1 11
PAGE 121 4TASH Newsletter, Dee. 1997/Jan. 1998 PART C: IMPACT ON INFANT AND TODDLERS
Part C. Infants and Toddlers with Disabilities
Remember Part H? The portion of the law that TASH acknowledges the assistance of our colleagues at the set out the requirements for educational services National Information Center for Children and Youth with Dis- for infants and toddlers with disabilities? It's abilities (NICHCY) in providing this side-by-side comparison of Part C of IDEA. To obtain a copy of the NICHCY News been renamed Part C and we've included a brief Digest in which this information appeared, call 1-800-695- list of the notable changes. 0285 (Voice/TTY) or send an e-mail to: [email protected]
Change within IDEA: In the old legislation, the Infants and * Change within IDEA: Under the new law, the Infants and Toddlers Program requirements were located in Part H, so Toddlers Program requirements are located in Part C. There that early intervention was often referred to as the Part H will no longer be a Part H. These changes take effect July 1, program. 1998.
Findings and policies: The old IDEA included findings related Findings and policies: IDEA 97 maintains prior findings and to the need to enhance the development of infants and modifies one of its purposes from developing an early toddlers with disabilities. intervention "program" to developing a "system that provides early intervention services." Also added is the purpose "to encourage States to expand opportunities for children under 3 years of age who would be at risk of having substantial developmental delay If they did not receive early intervention services." [Section 631(b)(1) and (4)1
*Definitions: A definition of "at-risk infant or toddler" did not Definitions: The new law maintains previous definitions and exist in old law. additionally defines "at-risk infant or toddler" as: "...an individual under 3 years of age who would be at risk of experiencing a substantial developmental delay if early intervention services were not provided to the individual." [Section 632(01
General requirements: The old law outlined a series of * General requirements: The new law maintains previous requirements, including a timetable for implementation of requirements and clarifies that the identification of each an early intervention system. family's needs must be "family-directed." [Section 635(a)(3)1 The implementation timetable has been dropped. A requirement is added that a State policy must be in effect that ensures availability of early intervention services. [Section 635(a)(2)1
* Natural environments: No similar provisions existed in the Natural environments: The new law requires policies and old IDEA. procedures that ensure:
"(A) to the maximum extent appropriate, early intervention services are provided in natural environments; and
(B) the provision of early intervention services for any infant or toddler occurs in a setting other than a natural environment only when early intervention cannot be achieved satisfactorily for the infant or toddler in a natural environment." [Section 635(a)(16)1
BEST COPYAVAILABLE continued on page 14 PAGE 13 TASH Newsletter, Dec. 1997/Jan. 1998 PART C: IMPACT ON INFANT AND TODDLERS
Infants and Toddlers with Disabilities continued from page 13
Personnel standards: Similar requirements existed for the Personnel standards: Similar requirements exist under the new Infant and Toddler Program. law for the Infant and Toddler Program. [Section 635(a)(8))
IFSP: The prior legislation outlined requirements for the IFSP: The new law maintains similar requirements, with the development of individualized family service plans (IFSP). additional requirement that a justification be included 41 of the extent, if any, to which services will not be provided in a natural environment." [Section 636(d)(5))
* Procedural safeguards: The old law outlined procedural Procedural safeguards: The new law maintains prior require- safeguards to be included in the statewide system. ments. The prohibition on who may not serve as a surro- gate parent is expanded to include individuals or employees of providers of early intervention services. [Section 639(a)(5)) Right to mediation, as delineated under Part B, applies to Part C as well, with Part B references to FAPE being considered as references to early intervention services. [Section 639(a)(8)]
*State Interagency Coordinating Council: The old law required a State Interagency Coordinating Council: The new IDEA State to establish an ICC according to listed specifications. maintains prior requirements regarding establishment, composition, meetings, management authority, and function of ICCS. The number of members is now left to the State to determine. [Section 641]
"We can see a future where we finally put an end to the divisive, false argument that goes, 'something for your child means something less for my child.'If the American experience tells us anything, it is that expanding opportunity lifts us all up. Let us be a proud nation that takes responsibility for all our children." Judith Heumann, Assistant Secretary of OSERS
An IDEA O&A With Tom Gilhool what thought would you leave us with? dictatorship. He replied, "The clearest continued from page 7 lesson is that in times and places where Tom Gilhool: Vaclav Havel, in what has citizenship is devalued, citizens must first best they could get. The situation began come to be called Czechoslovakia's "Velvet tell the truth as they see it and act upon it, to change when others, chiefly "beyond Revolution," was once asked what lessons rather than trying to calculate whether the beltway" and across the country, came he had learned during the difficult, their actions will succeed. For if they do, to the judgment that asking whether unlikely process of opening his country to they will not act." preservation of the IDEA was possible or democracy after years of communist fiA not was the wrong question, and that we must do better. The strength of the parent and family movement was sufficient to change the GETTING INFORMATION ABOUT IDEA: parameters in Washington. It was close To read or download the text of the law and the House and a 51 to 48 vote on the motion to table the Senate Conference reports, go to http://www.thomas.loc.gov reauthorization during the 104th Congress on the Internet and follow directions. The reports are 105-95 but successful! (House) and 105-17 (Senate). We recommend you look at the House report first, both reports are similar. The law is PL 105- Question: If you could sum up in a few 17, The Individuals with Disabilities Education Act Amendments words what we've learned from this IDEA of 1997. reauthorization, and what our families and advocacy groups should now remember, PAGE 1 4 TASH Newsletter, Dec. 1997/Jan. 1998 NOVEMBER/DECEMBER 1997
Information from the U.S. Department of Education, Office of SpecialEducation Programs, has stipulated a requirement that State Advisory Panelsinclude representation from a ma- jority of individuals with disabilities and parentsof children with disabilities.
State Advisory Panel Section 612(a)(20)Public Participation. (4) A requirement is added that the advisory This section requires that, prior to the adoption panel must advise the state educational of any policies and procedures needed to agencies (SEA) in developing corrective comply with Section 612 (including any action plans to address findings in Federal amendments to such policies and procedures), Part B monitoring reports; and there are public hearings, adequate notice of the hearings, and an opportunity to comment (5) A requirement is added that the advisory available to the general public, including panel must advise the SEA in developing individuals with disabilities and parents of and implementing policies relating to the children with disabilities. coordination of services for children with disabilities. Section 612(a)(21)State Advisory Panel. This section retains the requirements of Section Section 612(a)(22) Suspension and Expul- 613(a)(12) in the prior law regarding the sion Rates. This section establishes require- establishment of a State Advisory Panel, with ments for the examination of data regarding the following changes: rates of long-term suspensions and expulsions of children with disabilities. (1) A requirement is added that the advisory panel must include representatives of (1) The SEA must examine data to determine if private schools and public charter schools, significant discrepancies are occurring in and representatives from the State juvenile the rate of long-term suspensions and and adult corrections agencies; expulsions of children with disabilities (a) among LEAs in the State; or (b) com- (2) A requirement is added that a majority of pared to such rates for nondisabled chil- the members of the panel must be individu- dren within such agencies. als with disabilities or parents of children with disabilities; (2) If such discrepancies are occurring, the SEA must review and, if appropriate, (3) The section retains the requirement that the revise (or require the affected State or local advisory panel must comment publicly on educational agency to revise) its policies, any roles or regulations proposed by the procedures, and practices relating to the State regarding the education of children development and implementation of IEPs, with disabilities, but does not retain the the use of behavioral interventions, and requirement in prior law that the advisory procedural safeguards, to ensiire that such panel must comment publicly on the proce- policies, procedures, and practices comply dures for distribution of funds under Part B; with the Act.
ST CUP Y AVAILABLE '`()AGE15 TASH Newsletter, Dec. 1997/Jan. 1998 IDEA '97 11)EADISCRETIONARY PROGRAMS 197. OF
4. Studies and Evaluations (Part D, Coordinated Technical Assistance, Support, Discretionary programs are those Chapter 1, Sec. 674), which will and Dissemination of Information authority special programs or "enhancements" include national assessment studies, are shared by MS1P and the Research-to- that really make IDEA work. Teacher preparation of OSEP's Annual Report Practice Division. Projects supported preparation, early childhood (Part C), to Congress, and providing technical under the remaining five authorities are and parent training centers are assistance to local educational administered by OSEP's Research-to- examples of some of the discretionary agencies (LEAs). Funding for this Practice Division. programs funded under IDEA. section comes from a portion of The new law authorizes the Secretary funds appropriated under Parts B, of Education to use funds appropriated Assistance for Education of All Children under Part D (National Activities to prior to the reauthorization of IDEA, with Disabilities, and C, Infants and Improve Education of Children with OSEP supported discretionary Toddlers with Disabilities, of the law. Disabilities) to make continuation awards projects under 14 different to projects funded under the previous authorities. IDEA now combines these 5. Parent Training and Information law, if your project period extends 14 authorities into 7 authorities under Services (Part D, Chapter 2, Sec. beyond Fiscal Year 1998 (school year Part D, National Activities to Improve 682-684), which includes authoriza- 1997-1998). Education of Children with Disabilities, of tion for three activities: Parent In addition to continuing grant the new law. Training and Information Centers, applications, other areas of interest to Community Parent Resource your work include changes in the new Under Part D, Subpart 1: Centers, and Technical Assistance for law that affect proposed priorities, peer Parent Training and Information review procedures, and the comprehen- 1. State Improvement Grants (Part D, Centers. sive planning process. Sec. 651-656), which are awarded to state educational agencies (SEAs), 6. Coordinated Technical Assistance Process for Fiscal Year 1998 Priorities and of which 75% of funds must be and Dissemination of Information We are currently in the process of used for professional development (Part D, Chapter 2, Sec. 685), which developing priorities for Fiscal Year 1998 activities unless the Secretary grants includes authorization for technical based on the language of the new law. a waiver to a State; assistance and dissemination to The Department has the authority to improve early intervention, educa- finalize these priorities without receiving Under Part D, Subpart 2: tional and transitional services and public comment. However, as previous results for children with disabilities priorities have benefited from stakeholder 2. Research and Innovation to Improve and their families, and address comment, we are now developing a Services and Results for Children systemic-change goals and priorities. process to solicit you, and other stake- with Disabilities (Part D, Chapter 1, holders' input on the priorities proposed Sec. 672), which will fund new knowl- 7.Technology Development, Demon- for Fiscal Year 1998. edge development, integration of re- stration, and Utilization (Part D, search and practice, and improving Chapter 2, Sec. 687), under which Standing Plans professional knowledge. authorized activities include con- In accordance with the new legisla- ducting research and development, tion, we will be implementing certain 3. Personnel Preparation to Improve demonstrations, providing technical changes to our peer review procedures Services and Results for Children assistance, communicating informa- over the next year. Beginning in January with Disabilities (Part D, Chapter 1, tion on technology, captioning and 1998, we will appoint standing panels to Sec. 673), which will fund projects descriptive video services. evaluate applications under Subpart 2, dealing with low incidence disabili- Part D, of IDEA. These panels will ties, leadership preparation, projects Projects supported under the State consist of individuals with appropriate of national significant, and those Improvement authority are administered expertise and background, who will be dealing with high incidence disabili- by OSEP's Monitoring and State Improve- asked to serve on a panel for no more ties. ment Program (MSIP), while administra- tion of projects supported under the continued on page 17 PAGE 16 8TASH Newsletter, Dee. 1997/Jan. 1998 IDEA '97
Discretionary Programs of IDEA continued from page 16 than three consecutive years. We antici- Schools ARE for Everyone: pate that, as in years past, some of you may participate in this grant application review process. We will continue to keep you updated as our plans for standing The Ohio-S.A.F.E. Conference panels are developed and finalized this summer and fall. featuring Comprehensive Planning for Discretionary Programs NORMAN KUNC As required by IDEA, OSEP is establishing a comprehensive planning Friday, February 27, 19989:30 AM 3:00 PM (lunch provided) process for the discretionary activities 9:00 AM (registration begins) administered by the Research-to-Practice Division. This process will essentially Central Ohio SERRC continue the work, authorized under the 470 Glenmont Avenue previous law, of stakeholders who helped Columbus, Ohio 43214 us articulate program agendas for several 614-262-4545 (Voice) discretionary programs, including the 614-262-5989 (TTY) National Personnel Agenda, Program for Children and Youth with Serious Emotional Cost: $35.00 (A number of family scholarships are available.) The Disturbance, Program for Children with conference fee includes refreshments, lunch, and a complimen- Severe Disabilities, Special Studies Program, tary membership in Ohio-S.A.F.E. current members will have and the Technology, Educational Media and their membership extended by one year. Materials for Individuals with Disabilities Program. The new comprehensive Featured planning process will continue to involve Speaker: Norman Kunc, Co-Director of AXIS Consultation and Training Ltd. "individuals with disabilities, parents of children with disabilities, appropriate Schedule: Keynote Address professionals, and representatives of State and local educational agencies, private Topical Sessions schools, institutions of higher education, Using Advocacy to Create School Partnerships for Kids other Federal agencies, the National The Issue of Behavior Council on Disability, and national Modifications, Adaptations, Interventions and the General organizations with an interest in, and Ed. Curriculum expertise in, providing services to children Community Inclusion with disabilities and their families" (Sec. 661(a)(2)(A) to (D)). We will be soliciting Lunch (provided) stakeholder input and involvement in this process shortly after the start of the next Cracker Barrel Sessions (by age level) fiscal year, October 1, 1997. Discussion of Inclusive Education Issues and Sharing Successes The reauthorization of IDEA has Preschool/Early Childhood continued a long history of support for Elementary School discretionary projects that contribute to Middle School improved results for children with High School Age and Beyond disabilities and their families. We will continue to keep you informed of our Wrap up: Norman Kunc progress and look forward to your ongoing involvement, participation, and Questions/ support as we work to implement the new Registration law in the coming months. Information:Candee Basford (937) 695-0169 Marty Oppenheimer (614) 262-4545 1 ta BESTCOPYWVAILABLF PAGE 17 TASH Newsletter, Dec. 1997/Jan. 1998 NOVEMBER/DECEMBER 1997
Resources for Additional Informationonthe 1997 IDEA Amendments To obtain a copy of the law and the draft regulations, contact:
Office of Special Education and Rehabilitative Services (OSERS), Clearinghouse on Disability Information, Room 3132, Switzer Building, 330 C Street, S.W, Washington, D.C. 20202-2524. Telephone: 202-205-8241 (V/TTY). URL: http://www.ed.gov * * * * A copy of the Notice of Proposed Rulemaking (NPRM), appears on the Federal Register home page at [http://www.access.gpo.gov/su_docs].
TASH is interested in hearing from its readers about your personal and/or professional experiences with implementation of the provisions of the 1997 IDEA Amendments. Information may be sent via e-mail to: [email protected]
A live interactive teleconference about community efforts to improve teaching and learning:
SATE LLITE TOWN ME ETI NG: "Serving Students with Disabilities: What Families, Schools and Communities Need to Know" Tuesday, January 20, 19988:00-9:00 PM (Eastern time)
The U.S. Department of Education's January Satellite Town Meeting will look at ways that families, educators and communities can work together to improve the quality of education for students with disabilities and provide schools with the tools to assess what all children are learning. The discussion will include the recent amendments to the Individuals with Disabilities Education Act (IDEA).
Additional information is available by calling 1-800-USA-LEARN, or by e-mail at [email protected].
CONGRATULATIONS to the following newly elected members of the * * * * * * * * * * * * TASH Executive Board Mike Auberger (re-elected) Donna Gilles Jay Klein Tim Knoster Deb Kunz Joe Wykowski 20
PAGE 18 TASH Newsletter, Dec. 1997/Jan. 1998 STUDENTS' RIGHTS WHAT DOES IDEA '97 SAY ABOUT Evaluations, Eligibility, IEPs & Placements?
Purposes of evaluation. There are two continue to conform to the present TASH gratefully acknowledges the assis- purposes: first, to determine whether the nondiscriminatory safeguards, namely tance of Rud Turnbull of the Beach Cen- student has a disability; and, second, to no racial or cultural bias in tests or ter at the University of Kansas for al- determine the student's educational needs. materials lowing us to reprint excerpts from the administration in native language or article written by Rud with Kate Rainbolt Reevaluations. Reevaluations must occur mode of communication and Amy Buchele-Ash. The article high- at least once every three years, but may oc- validated standardized tests adminis- tered consistent with instructions by lights the significant new safeguards for cur if "conditions warrant" or if the student's students and the rights of parents to par- parents or teachers request a reevaluation. developer and by qualified personnel no single procedure used as the sole ticipate in educational decision-making. Evaluations before change of eligibility criterion. A copy of the full paper can be obtained and exclusion from Free and Appropri- from the Beach Center by calling 913- ate Public Education (FAPE). An LEA Parent participation in evaluation. All 864-7600 (Voice/TDD). must comply with the nondiscriminatory evaluations, however, must incorporate evaluation requirements before it may new safeguards for the parents: determine that a student is no longer the evaluation team must include the eligible for special education. parent in addition to qualified IDEA Sec.614 basically continues the professionals prior IDEA protections in nondis- Membership on the evaluation team. the parents must receive a copy of the criminatory evaluation, individualized The evaluation team (which also is the 1EP evaluation report and documentation of education and least restrictive environment team, thereby assuring a link between student eligibility for special education placement, with significant new safeguards evaluation, program, and placement) the parents may submit and require the for students and new rights of parents to consists of evaluation team to consider evaluations participate in educational decision making. the student's parents and information that they initiate. at least one regular education teacher EVALUATIONS (SEC. of the student, if the student is or may Enriched, more extensive evaluation. 614(B) AND (C)) be participating in the regular educa- All evaluations also must incorporate new Parent consent to evaluation. The initial tion environment safeguards for the students, and the evaluation still requires notice to parents at least one special education teacher evaluation team must and parental consent. or (where appropriate) a provider of use a variety of assessment tools and special education to the student strategies to gather relevant functional Subsequent evaluations continue to require a representative of the local agency and developmental information to notice to parents, but they now also must who is qualified to provide or super- determine whether the student has a be based on parental consent. vise specially designed instruction to disability and the content of the meet the unique needs of students student's IEP, including information Nonconsent. If the Local Educational with disabilities and is knowledgeable that enables the student to participate Agency (LEA) has taken reasonable about general curriculum and the in the general curriculum or, for measures to secure parent consent and if availability of local agency resources preschoolers, appropriate activities the parent has failed to respond to the an individual who can interpret the use technically sound instruments to as- request for consent, the LEA may then instructional implications of evalua- sess the relative contribution of cognitive evaluate the student. Also, if the parents tion results (who may already be a and behavioral factors, in addition to refuse to consent, the LEA may use the member of the team), and physical or developmental factors mediation or due process procedures to at the parents' or agency's discretion, use assessment tool and strategies that secure consent or permission to evaluate. other individuals who have knowledge provide relevant information that or special expertise (including related directly assists the term to determine Effect of consent. Consent to an evalua- services personnel), and the student that the student's educational needs tion is not consent for placement into (when appropriate). are provided (i.e. satisfied) special education. That consent must be review existing evaluation data, secured separately. Nondiscriminatory evaluation standards including current classroom-based and procedures. All evaluation must continued on page 20
PAGE 19 27tSH Newsletter, Dee. 1997/Jan. 1998 STUDENTS' RIGHTS
Evaluations, Eligibility, IEPs & evaluation and intervention to general Placements "Since the passage of IDEA,90 school improvement initiatives. continued from page 19 percent fewer developmentally disabled childrenare living in INDIVIDUALIZED assessments and observations and institutions, hundreds of teacher and related services' providers EDUCATION: THE IEP observations thousands of children with (SEC. 61 4(D)) identify what additional data they need disabilities attend public The IEP itself is redefined, and now to determine: schools and regular classrooms; includes the elements of the present law as (a) Does the student have a particular three times asmany disabled well as new elements. The "carryover" category of disability and does the young people are enrolled in and "new" elements are the following: student continue to have that dis- colleges and universities; ability? twice Performance and inclusion. Statement (b) What are the student's present lev- as many young Americans with of present levels of educational perfor- els of performance and educational disabilities in their 20sare in mance ("carry over") but these must needs? the American workplace.We include a new element i.e., how the (c)Does the student need (or have to continue to push these student's disability affects his/her involve- ment and performance in the general continue to need) special trends, to do everything education and related services? we can curriculum or, for a preschooler, appropri- (d) What, if any, additions or to encourage our children with ate activities (a pro-LRE provision). modifications to the student's disabilities not onlyto dream of special education and related doing great things, butto live Annual goals and inclusion. Statement services are needed to enable the out their dreams." of measurable annual goals related to two student to meet the measurable matters: annual goals of his or her IEP President Bill Clintonat the a new element, i.e., "benchmarks or short-term objectives" related to and to participate as appropriate signing ceremony for the IDEA in the general curriculum? meeting the student's needs that result Notify the parents that they do not Amendments (June 1997) from his/her disability to enable him/ need additional data to determine her to be involved and progress in the whether the student remains eligible general curriculum (another pro-LRE for special education and let the thereby link the evaluation to the IEP provision) parents know why they reached that and program a carry over element i.e., meeting the conclusion and that the parents may emphasize that the evaluation must student's other education needs that appeal it via mediation or due process. also take into account the student's are related to the disability Administer or have administered by participation in the general curiculum the local agency all tests and other (a pro-LRE provision) Service provision and inclusion. A evaluation materials that are needed require classroom-based data to be statement of services to be provided (a to produce the required data, but if generated and considered and thus general "carry over") but, as new elements, the team determines that it does not target not only the student's behavior the statement must identify two types of need additional data, it must so notify but also the capacity of the staff to services, namely: (a) special education and the student's parents, say why it deliver effective general and special related services, and (b) supplementary reached that conclusion and not education services aids and services.It must also describe collect additional data unless the focus equally on four domains of the the program modifications or supports parents request it to do so. student, namely, cognitive, behavioral, that the school will provide to its own staff physical, and developmental factors, so that the student may achieve three new SIGNIFICANCE OF thereby providing data that can be benefits, namely: used to develop effective interventions advancement appropriately toward CHANGES (including those that prevent suspen- attaining the IEP annual goals The new provisions sion and expulsion) and that inciden- involvement and progress in the substantially increase parent partici- tally assess the effectiveness of the general curriculum and participation pation rights services that the student receives, and in extracurricular and other nonaca- create a team that includes both the require the team to use "tools and demic activities parents and the student, and also a host strategies" that indicate whether the education and participation with of other individuals who are responsible school is meeting the student's other students (those with and for not just evaluation but also for pro- educational needs, thereby adding yet without disabilities) gram delivery and monitoring and for another accountability provision in placement decisions favor of the student and linking 22 continued on page 21
PAGE 20 TASH Newsletter, Dee. 1997/Jan. 1998 STUDENTS' RIGHTS
Evaluations, Eligibility, IEPs & Mandatory factors to be considered. The regular education teacher must Placements The team must consider the following: participate, as appropriate, in the annual continued from page 20 the student's strengths review and revision. the parents' concerns The IEP also must the results of all evaluations PROCEDURAL explain the extent, if any, the student special factors, namely SAFEGUARDS AND will not participate with students who for a student whose behavior impedes do not have disabilities in the regular his or others' learning appropriate PROCEDURAL DUE class and in extracurricular and other strategies, including positive behav- PROCESS nonacademic activities ioral interventions, strategies, and Since one of the purposes of the state what modifications in state or dis- supports, to address that behavior federal presence in special education has trict-wide assessments will be made so for a student with limited English pro- always been to safeguard parents' and the student can participate in those as- ficiency, the student's language needs students' rights, Sec. 615 reiterates IDEAs sessments and why the student will not for a student who is blind or visually traditional rights but adds new provisions, participate in them and otherwise been impaired, the use of Braille or other some of which strengthen those rights but assessed (if the student is to be ex- appropriate reading and writing media others of which create exceptions to them. empted from the assessments) for a student who is deaf or hard of hear- state when the services and modifica- ing, the student's language and commu- Parent rights. Sec. 615 restates the tions will begin how often they win nication needs, opportunities for direct following previous rights of parents: be delivered, where they will be communications with peers and profes- delivered, and how long they will last. sionals in the student's language and Notice. Parents have the right communication mode, academic level, to be notified whenever an agency Transition. At age 14 and annually and full range of needs proposes or refuses to change the afterwards, the IEP must state the student's for all students, whether assistive student's identification, evaluation, or transition services needs. At age 16 or technology devices and services are placement, or the provision of FAPE younger if the IEP team determines it to be appropriate. to have the notice contain certain appropriate, the 1EP must have a state- information ment of needed transition services and Regular education participation. The to have the notice be in their native interagency responsibilities or any other IEP team consists of a regular educator language needed linkages. who, to the extent appropriate, must to receive a copy of the procedural participate in developing the IEP, espe- safeguards Age of majority. A year before the cially by determining what are the to have that copy at certain times, student attains the age of majority, the IEP appropriate positive behavioral interven- namely, at initial referral for evalua- must have a statement that the student has tions and strategies and supplementary tion and at each 1EP and revaluation. been informed of his or her IDEA rights aids and services, program modifications, that will transfer from the parents to the and support for school personnel. Content of Notice, generally. All notices student upon reaching the age of majority to parents must contain seven separate (see Sec. 615(M)). Parent membership. Also, the agency elements: must ensure that the student's parents are 1. a description of the action the LEA Measuring progress. The IEP must members of any group that makes wants to take or refuses to take contain a statement of how the student's placement decisions. 2.an explanation of why the LEA progress toward annual goals will be reached that decision measured and how the parents will be Annual review and revision. At least 3. a description of any other options that regularly informed (as often as parents of annually and more often as warranted, the the LEA considered and why the LEA students without disabilities are informed) IEP team must review the IEP to deter- rejected each of them about the student's progress; the goals mine whether the student's annual goals 4.a description of each evaluation proce- relate to meeting the student's disability- are being achieved. dure, test, record, or report that the LEA caused needs that enable the student to be used as a basis for its decision involved in and progress in the general The team must then revise the IEP as 5. a description of any other factors curriculum and meeting each of the appropriate to address relevant to the LEAs decision student's other disability-caused needs. the student's lack of expected progress 6. a statement that the parents have toward annual goals and the general certain procedural safeguards (i.e., Timing. The IEP team must develop an curriculum due process protections) and the IEP and have one in effect at the beginning the results of any reevaluation notice is not an initial referral for of each school year (the effective date is a information provided by the parents evaluation, the means by which they new requirement). the student's anticipated needs any other matter2 continued on page 22
PAGE 21 TAM Newsletter, Dec. 1997/Jan. 1998 STUDENTS' RIGHTS
Evaluations, Eligibility, IEPs & decision on the issues, which decision Placements "We are a better country must be transmitted to the state continued from page 21 because disabled Americans agency and the State advisory panel have used IDEA to tell us a to appeal to the state agency and then can obtain a copy of a description of story that all Americans need to a federal or state court, and to have the procedural safeguards, and the court receive the records of the to hearthat no child should 7. the sources the parents may contact due process hearings and state-level to obtain assistance in understanding be shunted aside because we do appeals, hear additional evidence, and Part B (student and parent rights). not think that they can learn base its decision on the preponder- that every young person should ance of the evidence Procedural safeguards notice. An LEA be given the shills that they to recover attorney fees if he/she must give the parents a special notice, need in order to live indepen- prevails called the "Procedural Safeguards Notice," dentlyand that every Ameri- to have the student "stay put" during on at least these three occasions: can with a disability has a any due process hearings or appeals 1. Whenever an LEA proposes an initial contribution to make to build- or during any trials and appeals referral, ing up our society." to examine all records relating to the 2. Whenever the LEA notifies the student, and Richard W. Riley, parents that there will be an IEP to present complaints with respect to any meeting and whenever it reevaluates Secretary, U.S. Department of matter related to identification, evalua- the student, and Education tion, placement, or provision of FAPE. 3. Whenever the LEA receives from a parent a complaint that triggers the Parent participation. Sec. 615 adds a new mediation or due process hearing state educational agencies (SEA) from protection: parents have the right to process (and arguably whenever the a local hearing officer) participate in meetings that deal with LEA itself registers a complaint that civil actions (night to sue in federal or student identification, evaluation, and triggers these proceedings). state courts after an unsuccessful placement, and the provision of FAPE. appeal at the SEA level), and Form of procedural safeguards notice. attorneys' fees. Parent duties. Sec. 615, however, The notice must be written in the parents' imposes new duties on parents and limits native language (unless it is clearly not Access. Sec. 615 continues to grant their previous rights. Parents or their feasible to do so), must be written in an eas- parents the right to have access to all attorneys must give the state or local ily understandable manner, and must fully records about the student. agency notice (which must remain explain the procedural safeguards available confidential) that under Sec. 615 and its regulations. Due process complaints. Parents continue 1. identifies the student to have the right to have the opportunity 2. describes the nature of the problem Content of procedural safeguards notice. to present complaints about the student's related to any proposal by an agency The notice must relate to identification, evaluation, placement, and to change, or any refusal by an independent education evaluation provision of FAPE. agency, to change the student's prior written consent identification, evaluation, placement, parental consent Impartial due process hearing. Parents or provision of FAPE, and access to educational records continue to have the right to have access 3.proposes a resolution of the opportunity to present complaints to an impartial due process hearing and to problem(s) to the extent known and the student's placement during due have specified hearing rights, namely available to the parents at that time. process hearings to discover, and, with that right, to have the procedures related to students to reveal to the agency, at least five days Mediation. Parents must be offered an who are placed into an interim before a hearing, all evaluations com- opportunity to engage in mediation and, if alternative setting pleted by that date and the recommen- they decline, they must meet with a the requirements for unilateral dations based on the evaluations that disinterested party (a parent training and placement by parents into a private will be made at the hearing information center, community parent school at public expense to be represented by counsel resource center, or other alternative mediation to present evidence, confront, dispute resolution entity) to be encour- due process hearings, including examine, cross-examine, and compel aged during that meeting to use mediation requirements for the parent to the attendance of witnesses and be told its benefits. disclose all evaluation results and to have a written or electronic Mediation must be voluntary, may not recommendations at least five days verbatim record of the hearing deny or delay a parent's or student's rights, before the hearing to have a written or electronic state-level appeals (appeals to the verbatim findings of fact and a continued on page 31 PAGE 22 TASH Newsletter, Dec. 1997/Jan. 1998 NOVEMBER/DECEMBER 1997
Regulations for Implementing IDEA '97
The changes in IDEA '97 require the U.S. Department of Education to write new regulations for implementing the law. The Notice of Proposed Rulemaking (draft regulations) was published on October 22, 1997. After a 90-day period of public comment, final regulations will be issued, probably sometime next summer. Public hearings on the draft regulations were conducted in October and November at locations across the country. Many TASH members provided oral testimony The TASH Education Interest and Action Committee is working on providing written input prior to the January 20, 1998 deadline. We will also issue a statement of the TASH position early in January. This statement will be distributed as widely as possible. The statement will also be published on TASH's website, www.tash.org. In addition, we will make the statement available upon request during the period January 8-20, 1998. Please call Marcie Roth at 410-828-8274, ext. 104 if you would like to comment on the proposed regulations.It will be vitally important for TASH members to comment on what you think is acceptable or unacceptable in the regulations and what you think is missing and should be part of the regulations. The proposed regulations are available on the Internet at: http://ocfo.ed.gov/fedreg/proprule.htm. You may also obtain a copy of the Notice of Proposed Rulemaking through one of several other sources:
Call 1-800-USA-LEARN to request a copy Call (202-512-0000) or write the Government Printing Office, Superintendent of Documents, PO. Box 37195-7954, Pittsburgh, PA 15250 Call the Federal Depository Library or Government Printing Bookstore in your area. To locate the library or bookstore nearest to you, call 202-512-1530. Individuals with disabilities may obtain the Notice of Proposed Rulemaking in an alternate format (Braille, large print, audiotape, computer diskette) by contacting: Katie Mincey, Director of Alternate Formats Center, Telephone: 202-205-8113 or E-mail: [email protected]
Materials Available
Materials are available regarding participatory research, the facilitation of friendship for students with severe disabilities, the assessment of social skills, attitudes toward inclusion, consultation models to support integrated educational services for stu- dents with challenging behaviors, collaborative teaching and educational learning, positive approaches for challenging behaviors, and the inclusion of students with severe disabilities in general education.
For a list of publications and measures, write or call: Gerald M. Mager, Ph.D., Special Projects, Teaching and Leadership, 150 Huntington Hall, Syracuse, New York 13244-2280 or call 315-443-1881 and ask for Wyvonnia Melton.
PAGE 23 TASH Newsletter, Dee. 1997/Jan. 1998 DISCIPLINE
The Individuals with Disabilities consequences of the behavior; OR (4) the Education Act (IDEA) Amend- child's disability impaired his or her ments of 1997, Pub. L. 105-17, ability to control the behavior. 111 Stat. 37 (June 4, 1997), made many significant changes in the HIGHLIGHTS 4. Behavioral Assessments and rights of children with disabilities in the Intervention Plans [20 U.S.C. context of school discipline. The follow- OF THE Section 1415(k)(1 )(B)] ing summarizes the most critical provi- sions of the new law as it pertains to Whenever school officials remove a discipline, including disciplinary exclu- DISCIPLINE child from his or her current educational sion, the filing by schools of crime reports placement, including for ten days or less, and delinquency petitions, and the rights the school system must conduct a of youth incarcerated in adult facilities.It PROVISIONS functional behavioral assessment of the is not a comprehensive discussion of the child and develop a behavioral interven- discipline rights of students with disabili- OF THE tion plan. If such an assessment already ties (which includes rights under Section has been done and a plan developed, the 504 of the Rehabilitation Act of 1973, and IEP team must review the plan and other laws), nor of all the discipline issues INDIVIDUALS modify it as necessary to address the raised by the new IDEA. behavior that prompted the removal. While the statute clearly provides that 1. Free Appropriate Public WITH these rights apply in suspensions of any Education (FAPE) for Students length, the U.S. Department of Education, Who Have Been Suspended or DISABILITIES without legal analysis, has taken the Expelled [20 U.S.C. Section position that schools need not conduct 1412(a)(1)]' assessments or develop or review plans EDUCATION unless the child will be excluded from his The new law explicitly states that all or her current placement for a total of 11 children with disabilities are entitled to a days or more during a given school year.4 free appropriate public education, ACT including those who have been suspended 5. Dangerous Weapons and or expelled from school. The statute AMENDMENTS Drugs [20 U.S.C. Subsection makes no distinction between short-term 1415(k)(1)(A)(ii), (k)(6)(B)(ii), (10 days or less) and long-term (more (k)(10)(A), (D)] than 10 days) suspensions. Nonetheless, OF 1997 the U.S. Department of Education has School personnel may unilaterally PRODUCED BY THE CENTER FOR LAW AND EDUCATION, taken the position that the right to FAPE place a child in an "appropriate interim BOSTON, MA is triggered only when a student has been alternative educational setting" for the suspended for more than 10 days in a same amount of time a non-disabled child school year.' would be subject to discipline, but not for 3. Manifestation Determination more than 45 days, if the child "carries" 2. Permissible Suspensions and [20 U.S.C. Subsection certain dangerous weapons to school or a Expulsions (20 U.S.C. 1415(k)(4)(B), (C)] school function, OR knowingly possesses Subsection 1415(k)(4), (5)] or uses illegal drugs, OR sells or attempts The manifestation determination is to sell a controlled substance at school or Students with disabilities may be made by the IEP team, which includes a school function.' A child may not be suspended for more than 10 days in a parents, and other "qualified personnel." removed to an interim alternative educa- given school year or expelled to the same The team must find that the behavior was tional setting unless (1) keeping the child extent as non-disabled students if the a manifestation of disability if: (1) in in the current placement is substantially behavior in question was not a manifesta- relation to the behavior, the child's IEP or likely to result in injury to the child or tion of disability. The statute may also be placement was inappropriate; OR (2) in others; AND (2) reasonable efforts to interpreted to require a manifestation relation to the behavior, special education minimize the risk of harm in the current determination for suspensions of 10 days services, supplementary aids and services, placement, including the use of supple- or less. The U.S. Department of Education and behavior intervention strategies were mentary aids and services, will not be has taken the position that a manifestation not implemented in a manner consistent effective; AND (3) the interim alternative determination is not required unless with the child's IEP and placement; OR educational setting meets statutory suspension for a total of 11 days or more in (3) the child's disability impaired his or a given school year is contemplated.' her ability to understand the impact and continued on page 25 PAGE 24 TASHNewsletter, Dec. 1997/Jan. 1998 2 6 DISCIPLINE
HIGHLIGHTS OF THE DISCIPLINE 7. Interim Alternative alternative educational setting (for a PROVISIONS OF IDEA '97 Educational Setting [20 U.S.C. weapon, drugs or dangerous behavior as continued from page 24 Subsection 1415(k)(2), (3)] described above), he or she must remain there pending the hearing officer's requirements (see below).6 Prior to In a weapon or drug case, the decision (but for no more than 45 days), removing a child to an interim alternative interim alternative educational setting is unless the parent and the state or the educational setting, the school must also determined by the IEP team, which by school district agree otherwise. All other consider the appropriateness of the child's definition includes parents." In cases of children retain the right, as under prior current placement.' "dangerous" behavior brought to a law, to "stay-put" in their current educa- If the school has determined that the hearing officer, the hearing officer makes tional placement pending resolution of the child's conduct was not a manifestation of the determination." In either case, the dispute unless the parent and the state or disability, the child may be suspended or setting must provide FAPE." It must the school district agree otherwise. expelled for the same period of time for enable the child to continue to participate which non-disabled children are disci- in the general curriculum, and to 10. Students Not Previously plined for the same conduct; the require- continue to receive the services, includ- Determined Eligible Under IDEA ments regarding removal to an interim ing those set out in the child's current IEP, [20 U.S.C. Sec. 1415(k)(8)] alternative educational setting and the that will enable him or her to meet the 45-day time limit do not apply' However, IEP goals. Furthermore, the interim A student who had not been deter- the school system must provide FAPE alternative educational setting must mined to be eligible for services under during the period of suspension or include services and modifications IDEA prior to a disciplinary incident may expulsion.9 designed to address the behavior that assert IDEA protections if the school 6. Other Dangerous Behavior triggered the child's placement there so system "had knowledge" that he or she that it does not recur. was a child with a disability before the [20 U.S.C. Sec. 1415(k)(2)] behavior in question occurred. The 8. Home Tutoring school system will be deemed to have If school personnel maintain that a had such knowledge if (1) the parent child's placement must be changed Given the statutory requirements for expressed concern in writing that the because of dangerous in-school behavior an "interim alternative educational child needs special education and related (other than the weapon and drug cases setting," home tutoring will virtually services; OR (2) the child's behavior or described above) that is a manifestation never be a legally permissible placement. performance demonstrates the need for of disability'0 and the child's parents Apart from these specific requirements, such services; OR (3) the parent has dispute the school's decision, the school home tutoring rarely, if ever, can meet the requested an evaluation; OR (4) the may seek permission from a due process statutory definition of FAPE; thus even child's teacher or other school system hearing officer to place the child in an children suspended or expelled because personnel has expressed concern about interim alternative educational setting for their conduct was deemed unrelated to the child's behavior or performance to up to 45 days. The hearing officer may their disabilities ordinarily cannot be other school system staff.'' order placement into an interim setting if placed on homebound instruction.'4 In If the school district did not "have he or she (1) determines that the school addition, the U.S. Department of knowledge," the child can be subjected to system has demonstrated by more than a Education's proposed regulations imple- the same disciplinary measures to which preponderance of the evidence that menting the 1997 IDEA Amendments non-disabled children are subjected. keeping the child in the current place- would require suspended and expelled However, if an evaluation is requested it ment is substantially likely to result in students to meet the criteria for interim must he expedited, and a free appropriate injury to the child or others; AND (2) alternative educational settings." public education, including special considers whether the school system has education and related services provided if made reasonable efforts to minimize the 9. Hearings on Discipline Issues the child is found to be a child with a risk of harm in the child's current and Stay-Put Rights [20 U.S.C. disability. Pending the results of the placement, including the use of supple- Subsection 1415(j), (k)(6)(A), evaluation, the child remains in the mentary aids and services; AND (3) "educational placement" determined by considers the appropriateness of the (k)(7)] school authorities. The statute's use of child's current placement; AND (4) Parents have a right to an expedited the phrase educational placement should determines that the interim alternative impartial due process hearing if they mean that educational services must be educational setting meets the statutory disagree with a determination that a provided during this period, even if the requirements (see below). child's behavior was not a manifestation child has been suspended or expelled of disability, or with any decision from school. regarding placement.'6 If the child has already been placed in an interim continued on page 26 BEST COPY AVMLABLF PAGE 252 r/TASH Newsletter, Dee. 1997/Jan. 1998 DISCIPLINE
HIGHLIGHTS OF THE DISCIPLINE authorities to whom it has reported a rehabilitation through the withholding of PROVISIONS OF IDEA '97 crime unless the disclosure falls within services IDEA otherwise requires should continued from page 25 one of FERPAs very narrow exceptions.2' not constitute a "compelling penological interest" for purposes of this provision. 13. Youth Incarcerated in Adult 11. Referral to and Action by Facilities [20 U.S.C. Subsection Law Enforcement and Judicial 1412(a)(1)(B)(ii), 1414(d)(6)] Footnotes Authorities [20 U.S.C. Sec. 1415(k)(9)(A)] IDEA now permits states, if consistent All citations are to the U.S. Code as with state law, to deny IDEA instruction amended by the IDEA Amendments of The 1997 Amendments state that and services to youth aged 18 through 21 1997, Pub. L. 105-17, 111 Stat 37. nothing in IDEA shall be construed to who are incarcerated in adult facilities and, prohibit schools from "reporting a crime in their last educational placement prior to See Judith E. Heumann, Assistant committed by a child with a disability to adult incarceration, were not identified as Secretary Office of Special Education appropriate authorities." The terms being a child with a disability under IDEA and Rehabilitation Services and Thomas "reporting" and "appropriate" authorities and did not have an IEP22 The new law Hehir, Director, Office of Special are not defined in the statute, and also makes exceptions to certain IEP Education Programs, Memorandum to therefore must be given their ordinary requirements for youth, regardless of age, Chief State School Officers Re: Initial meaning. Thus properly interpreted, the who are convicted as adults and incarcer- Disciplinary Guidance Related to new language limits schools to notifying ated in adult prisons. Students who will Removal of Children with Disabilities law enforcement agencies (e.g., police) of not be released from prison before they from their Current Educational Place- crimes, and does not authorize notifying reach the age limit for receiving services ment for Ten School Days or Less, the judicial branch, e.g. through the filing under IDEA may be denied transition (OSEP 97-7, September 12, 1997) of delinquency petitions. In regard to the planning and transition services. In order (hereinafter "OSEP Memo"; Notice of judiciary, the new law simply provides to ensure that youth who do actually leave Proposed Rulemaking (hereinafter that nothing in IDEA "shall be prison before they "age out" of IDEA "NPRM"), 62 Federal Register 55025, construed...to prevent...judicial authori- receive transition services, as Congress 55074 (September 22, 2997) (proposed ties from exercising their responsibilities intended, (1) children should not be 34 C.F.R. Section 300.121 (c)(2). with regard to the application of Federal denied transition planning and services and State law to crimes committed by a until they have exhausted direct appeals of 3See OSEP Memo, supra; NPRM, supra, child with a disability" The legislative their conviction and sentence, and (2) the 62 Fed. Reg. At 55103 (proposed 34 history of these provisions explains that release date used to determine whether a C.ER. Section 300.523(b)). schools may not report crimes to even youth retains the right to transition "appropriate" authorities where doing so planning and services must be the earliest 4See OSEP Memo, supra, NPRM, supra, would circumvent the school's obligations date under state law on which he or she 62 Fed. Reg. At 55102 (proposed 34 to the child under IDEA.'8 might be released, taking into account all C.F.R. Section 300.520(b), ( c)). reductions and credits on the child's 12. Transmission of Records sentence for which he or she may be 5 "Weapon" means "a weapon, device, When Crimes are Reported [20 eligible.23 instrument, material, or substance, U.S.C. Sec. 1415(k)(9)(B)] In addition, the IEP team may animate or inanimate, that is used for, or modify a youth's IEP or placement is readily capable of, causing death or IDEA now states that when a school notwithstanding the statutory compo- serious bodily injury, except that such reports a crime alleged to have been nents of an IEP or IDEAs least restrictive term does not include a pocket knife committed by a child with a disability, it environment requirement if the state "has with a blade of less than 2 inches in must send copies of the child's special demonstrated a bona fide security or length." See 20 U.S.C. Sec. education and disciplinary records to the compelling penological interest that 1415(k)(10)(D), incorporating by "appropriate authorities" to whom it cannot otherwise be accommodated." reference the definition of "dangerous reports the alleged crime. Other provi- This provision should be construed to weapon" found at 18 U.S.C. Sec. sions of IDEk9 require states and local permit only individualized determina- 930(g)(2). For definitions of "illegal school systems to comply with the tions regarding bona fide security and drugs" and "controlled substance," see Family Educational Rights and Privacy compelling penological interests, and to 20 U.S.C. Sec. 1415(k)(10)(A). Act (FERPA)2° which, with a few narrow prohibit institutional policies of general exceptions, prohibits disclosure of application that have the effect of See 20 U.S.C. Sec. 1415(k)(6)(A)(ii), education records without prior written modifying or limiting IEPs. Administra- incorporating by reference the standards parental consent (or the consent of a tive convenience, lack of funds or need set out in 20 U.S.C. Sec. 1415(k)(2). student aged 18 or older). Therefore, a for cost reduction measures, or the school may not send records to the promotion of prison discipline or ' Id. continued on page 27 PAGE 26 0...MASH Newsletter, Dee. 1997/Jan. 1998 0 DISCIPLINE
HIGHLIGHTS OF THE DISCIPLINE in conformity with the individualized 18 See statement of Sen. Harkin, one of PROVISIONS OF IDEA '97 education program..." 20 U.S.C. Sec. the legislation's co-sponsors, at Cong. continued from page 26 1402(8). Post- "suspension" or "expul- Rec. May 14, 1997 at S4403 ("The bill sion" education thus must include "an also authorizes...proper referrals to appropriate elementary or secondary police and appropriate authorities when Footnotes (continued) education in the state involved." disabled children commit crimes, so Education limited to the special educa- long as the referrals, do not circumvent tion supports (e.g. three hours per week the school's responsibilities under 'See 20 U.S.C. Subsection of assistance in math related to a IDEA"). 1415(k)(4)(A), (5)(A). learning disability) and/or related services listed on a child's pre-expulsion 19 Specifically, 20 U.S.C. Subsec. 20 U.S.C. Sec. 1415(k)(5)(A), incorpo- IEP does not meet this standard. 1412(a)(8) and 1417 ( c). rating by reference 20 U.S.C. Sec. Homebound instruction, particularly the 1412(a)(1). time- and subject matter-limited variety 2020 U.S.C. Sec. 1232g. routinely provided in many school 10 If the school determines that the systems, will rarely meet this standard 21 For FERPA exceptions, see 20 U.S.C. behavior is not a manifestation of either. Sec. 1232g(b); 34 C.F.R. Sec. 99.31; 34 disability, the statute school officials to C.F.R. Sec. 99.38 as added to the FERPA characterize the behavior as a violation In addition, most states and many local regulations by 61 Fed. Reg. 59297 of the school discipline code and subject school systems have adopted minimum (November 21, 1996). There is no the child to the same disciplinary requirements regarding the length of the blanket exception for crime reports. measures to which non-disabled school day, the content of curricula and children are subjected. See 20 U.S.C. the amount of time during the day that 22 The statute is somewhat confusing on Sec. 1415(k)(4)(A), (5)(A). However, must be devoted to academic instruc- this point, stating that FAPE may be the child must continue to receive FAPE. tion. These requirements define in part denied if, in the placement prior to 20 U.S.C. Sec. 1415(k)(5)(A), incorpo- "an appropriate elementary or secondary incarceration, the student was not rating by reference 20 U.S.C. Sec. education in the state involved," 20 identified as a child with a disability 1412(a)(1). U.S.C. Sec. 1402(8)(C), and (to the "or" did not have an IEP The Senate " 20 U.S.C. Sec. 1414(d)(1)(B)(i). extent adopted or approved by the state) Committee Report on the 1997 IDEA are "standards of the State educational amendments, however, clearly states 12 It may be expected, however, that agency" that must be met pursuant to 20 that, under this new provision, youth schools will present a specific proposed U.S.C. Sec. 1402(8)(B). Home tutoring "who did not have an IEP in their last interim alternative educational setting to may be challenged as failing to provide a educational placement but who had the hearing officer. Parents must be "free appropriate public education" on actually been identified should not be permitted to participate in developing these bases as well. excluded from services." Senate Report any such proposal. See 20 U.S.C. Sec. 105-17 at 11. The U.S. Department of 1414(0 as amended (local and state 15 NPRM, supra, 62 Fed. Reg. at 55074 Education's proposed regulations reflect educational agencies "shall ensure that (proposed 34 C.ER. Sec. _00.121(c)(3), this view, and require services for any parents of each child with a disability incorporating by reference proposed 34 youth who was identified in the immedi- are members of any group that makes C.ER. Sec. 300.522). ately prior placement, even if he or she decisions on the educational placement did not have an IEP See NPRM, supra, of their child"). See also 20 U.S.C. Sec. 16 Under the U.S. Department of 62 Fed. Reg. At 55074-75 (proposed 1414(d)(1)(B)(i) (parents as IEP team Education's proposed regulations, regulation 34 C.F.R. Sec. 300.122(a)(2)). members). expedited hearings must result in a decision within 10 business days of the 23 The U.S. Department of Education's 13 20 U.S.C. Sec. 1412(a)(1). hearing request, unless the parents and proposed regulation states that transition school officials agree otherwise. See planning and services requirements do 14 Under IDEA, "free appropriate public NPRM, supra, 62 Fed. Reg. at 55104 not apply to students whose IDEA education" means "special education and (proposed regulation 34 C.F.R. Sec. eligibility will end, because of their age, related services that (A) have been 300.528(a)(1). efore they will be eligible to be provided at public expense. under released from prison based on consider- public supervision and direction, "A parent need not have expressed ation of their sentence and eligibility for without charge, (B) meet the standards concern about special education needs early release." 62 Fed. Reg. At 55087 of the State educational agency, (C) in writing if "the parent is illiterate or (proposed 34 C.F.R. Sec. 300.311(b)(2)). include an appropriate preschool, has a disability that prevents compliance elementary or secondary education in with [these] requirements." 20 U.S.C. the State involved, and (D) are provided Sec. 1415(k)(8)(B)(i). 0 PAGE2729 TASH Newsletter, Dee.1997/Jan. 1998 DISCIPLINE
school or a school function, or The following memorandum regarding the discipline provisions of IDEA '97 was reprinted knowingly possesses or uses illegal with permission from the U.S. Department of Education, Office of Special Education and drugs or sells or solicits the sale of a Rehabilitative Services. controlled substance while at school or a school function. Gives school personnel the option of MEMO RAN D UM asking a hearing officer to move children with disabilities to an interim alternative educational setting for up To: Chief State School Officers to 45 days if they are substantially likely to injure themselves or others in From: Judith E. Heumann, Assistant Secretary, OSERS their current placement. Thomas Hehir, Director, OSEP INITIAL GUIDANCE REGARDING Subject:Initial Disciplinary Guidance Related to Removal of REMOVAL OF CHILDREN WITH DISABILITIES FROM THEIR Children with Disabilities from the Current CURRENT PLACEMENT Educational Placement for Ten School Days or Less We recognize that the statute is susceptible to a number of interpretations in some areas related to discipline, but the The purpose of this memorandum With regard to discipline for position enunciated below represents what is to provide initial guidance on children with disabilities, we believe is the better reading of the the requirements of the Individuals IDEA '97: statute. We are providing this information with Disabilities Education Act Amend- Brings together for the first time in (in a question and answer format) to assist ments of 1997 (IDEA '97) as they relate to the statute the rules that apply to States and school districts in implement- the removal of children with disabilities children with disabilities who are ing IDEA '97 prior to publication of from their current educational placement subject to disciplinary action and Department regulations. To the extent for ten school days or less. The Depart- clarifies for school personnel, these questions and answers provide ment of Education has received numerous parents, students, and others how information not specifically addressed in requests for guidance concerning the school disciplinary rules and the the Statute, the information is being discipline provisions of IDEA '97. The obligation to provide FAPE fit provided as non-binding/non- regulatory Department plans to regulate in each of together by providing specificity guidance. We will be issuing proposed the areas where clarification is needed. about important issues such as regulations in the near future that reflect whether educational services can the positions taken in this document. Four basic themes run cease for a disabled child; how throughout the statute manifestation determinations are concerning discipline: made; what happens to a child with QUESTION 1: Under IDEA, do public (1) All children, including children with disabilities during parent appeals; agencies have a responsibility, as part of the disabilities, deserve safe, well- and how to treat children not IEP process, to consider a child's behavior? disciplined schools and orderly previously identified as disabled. learning environments; Includes the regular education ANSWER: Yes. Section 614(d)(2)(B) (2) Teachers and school administrators teacher of a child with a disability in requires the IEP team "in the case of a should have the tools they need to the child's IEP meetings to help child whose behavior impedes his or her assist them in preventing misconduct ensure that the child receives learning or that of others, [to] consider, and discipline problems and to appropriate accommodations and when appropriate, strategies, including address these problems, if they arise; supports within the regular educa- positive behavioral interventions, (3) There must be a balanced approach tion classroom, and gives the regular strategies, and supports to address that to the issue of discipline of children teacher an opportunity to better behavior." In addition, school districts with disabilities that reflects the need understand the child's needs and should take prompt steps to address for orderly and safe schools and the what will be necessary to meet those misconduct when it first appears. Such need to protect the right of children needs, thus decreasing the likelihood steps could, in many instances, eliminate with disabilities to a free appropriate of disciplinary problems. the need to take more drastic measures. public education (FAPE); and Allows school personnel to move a These measures also could be facilitated (4) Appropriately developed IEPs with student with disabilities to an through the individualized education well developed behavior intervention interim alternative educational program (IEP) and placement processes strategies decrease school discipline setting for up to 45 days, if that problems. student has brought a weapon to continued on page 29 PAGE 28 3 elASH Newsletter, Dec. 1997/Jan. 1998 DISCIPLINE
U.S. Dept. of Education not believe that it was the intent of believe that other specific actions are Memorandum on Disciplinary Congress to require that FAPE be required during this time period. How- Guidance Under IDEA '97 provided when a child is removed for ten ever, school districts are strongly encour- continued from page 28 school days or less during a given school aged to review as soon as possible the year. However, there is nothing in the circumstances that lead to the child's required by IDEA. For example, when IDEA '97 that would prevent the provi- removal and consider whether the child misconduct appears, a functional behav- sion of FAPE during this time. was being provided services in accordance ioral assessment could be conducted, and with the 1EP and whether the behavior determinations could be made as to could be addressed through minor class- whether the student's current program is room or program adjustments, or whether QUESTION 5: Must there be a manifes- appropriate and whether the student the IEP team should be reconvened to ad- tation determination before a student could benefit from the provision of more dress possible changes to the IEP specialized instructional and/or related with disabilities can be removed from his services, such as counseling, psychological or her current education placement for a services, or social-work services in period of ten school days or less during a schools. In addition, training of the given school year? QUESTION 8: Does IDEA continue to al- teacher in effective use of conflict manage- low a school district to seek a court order to ment and/or behavior management ANSWER: No. The Department does remove a student with a disability from strategies also could be extremely effective. not believe that the statute requires a school or otherwise change the student's In-service training for all personnel who manifestation determination prior to a placement? If so, under what circumstances? work with the student and, when appro- removal for a period of ten school days or priate, other students, also can be essential less in a given school year. However, if ANSWER: Yes. IDEA continues to allow in ensuring the successful implementation an action that involves the removal of a a school district to seek to obtain a court of the above interventions. child with a disability from his or her order to remove any student with a current educational placement for more disability from school or to change the than ten school days in a given school student's current educational placement if year is contemplated, the Department the school district believes that maintain- QUESTION 2: Does the right to a free believes that a manifestation determina- ing the student in the current educational appropriate public education extend to tion should be required and the manifes- placement is substantially likely to result children with disabilities who are tation determination must take place as in injury to the student or to others.1 suspended or expelled? soon as possible but in no case later than ten school days after the decision to take In addition, the new statute allows ANSWER: Yes. A free appropriate public that action is made. (615(k)(4)(A)). school authorities to ask a hearing officer education must be made available to all to move children with disabilities to an eligible children with disabilities, interim alternative educational setting for including children with disabilities who up to 45 days if they are substantially QUESTIONS 6: Must a functional have been suspended or expelled from likely to injure themselves or others in behavioral assessment be conducted prior school. (Section 612(a)(1)). their current placement. The hearing to a removal of ten school days or less officer may move the child to an alterna- during a given school year? tive educational setting if the public agency demonstrates by evidence that is QUESTION 3: What is the meaning of the ANSWER: No. The Department does not more than a preponderance of the phrase "children with disabilities who have believe the statute requires a functional be- evidence that maintaining the child in the been suspended or expelled from school?" havioral assessment, if a child with a dis- child's current placement is substantially ability is removed from his or her current likely to result in injury to the child or ANSWER: The Department believes that educational placement for ten school days others. The hearing officer must consider the phrase means children with disabilities or less in a given school year, and no further the appropriateness of the child's place- who have been removed from their current disciplinary action is contemplated. educational placement for more than ten ment, whether the school district has school days in a given school year. made reasonable efforts to minimize the risk of harm in the child's current QUESTION 7: Are there any specific placement, including the use of supple- actions that a school district is required to mentary aids and services, and determine QUESTION 4: Must educational services take during a removal of a child with a that the interim alternative educational be continued during the removal of a child disability from his or her educational setting meets the requirements of Section with a disability from his or her educational placement for ten school days or less? 615(k)(3) of the Act. placement for ten school days or less? 1 Honig v. Dec. 108 S. Ct. 592, 606 (1988). ANSWER: If no further removal is ANSWER: No. The Department does contemplated the Department ds not PAGE 29 TAM Newsletter, Dee. 1997/Jan. 1998 DISCIPLINE
The following is a response letter to the OSERS/ OSEP disciplinary guidance memo (pages 28- 4ette4eee4State 29 of this Newsletter). A list of the authors of the letter appears at the end of the article. Scited
write on behalf of the the relevant disciplinary procedures disciplinary action and clarifies for school N ational Down Syndrome applicable to children without disabilities personnel, parents, and others how school Congress, the Autism may be applied to the child in the same disciplinary rules and the obligation to National Committee, manner in which they would be applied to provide a free, appropriate education fit WTASH, and many parents from around the children without disabilities, except as together. The bill provides specificity about country who participated in the legislative provided in section 612 (a)(1)." important issues such as whether educa- conversations conducted by David Hoppe, The referenced paragraph (4) covers "a tional services can cease for a disabled
Trent Lott's Chief of Staff, which formulated disciplinary action...contemplated as de- child they cannot how manifestation the new Act. We write to address the U.S. scribed in paragraph 1.. ." It is this refer- determinations are made, what happens to Department of Education's letter sent to you enced paragraph 1 which authorizes disci- a child with disabilities during the parent on September 19, 1997 over the signatures plinary actions "for not more 10 school days appeals, and how to treat children not of the Assistant Secretary and Director. (to the extent such alternatives would be previously identified as disabled." 143 First, we wish to call to your attention applied to children without disabilities)." Congressional Record No. 62, page S4359, two new provisions of the Act, in Section Such clearly expressed Statutory co1.2. (May 13, 1997) 607, which render the recent letter language cannot be evaded, but rather Closing floor debate on an Amend- advisory at best, and which set high must be "enforced by the Courts" and by ment which would have reversed those standards for any regulation that may later rulemaking agencies. West Virginia intentions, the ranking minority sponsor be issued by the Department. Hospitals, Inc. v. Casey, 499 U. S. 83, 100 was clear and concrete about what the Act "Any written response by the Secretary (1991) (Justice Scalia); Negansott v. requiresincluding for disabled students
.. .regarding a policy, question or interpre- Samuels. 507 U.S. 99, 104 (1993); Iselin v. no out-of-school suspensions: tation under Part B of this Act shall include United States, 270 U.S. 245, 250-51 "My colleague also quotes a parent of a an explanation that the written response - (Justice Brandeis). nondisabled child who was told by a lawyer (1) Is provided as informal guidance As a result, "appropriate public that she has no rights when her child's class and is not legally binding; education" must continue even during any is disrupted by a disabled child. I say to that "The Secretary may not implement, or suspension. parent she better get a new lawyer." publish in final form any regulation that In effect, the Act has adopted as law "They have a right to a class environ- would procedurally or substantively lessen the practice of in-school suspension that ment that is safe and conducive to learning." the protections provided to children under must be consistent with FAPE. As you "That parent has a right to insist that this Act, as embodied in regulations in know, this practice has taken strong hold the schools develop positive behavior effect on July 20, 1983..., except tothe in recent decades in many schools. Among approaches and train teachers and provide extent that such regulation reflects the clear the bases of this increasingly widespread them with the necessary supports. What and unequivocal intent of the Congress in practice of "in-school suspension" now they don't have is the right to kick that dis- Legislation." made mandatory for all children with abled kid out of the class just as school sys- Second, we believe that several of the disabilities is the professional wisdom tems cannot kick out African-American chil- positions preliminarily articulated in the that while discipline is being exerted, a dren when a white child or his parents are September 19, 1997 letter are wrong. child's connection with the school and with uncomfortable around African-Americans." The language of the Act is plain and teaching and learning should not be broken "Can we have school environments clear. At Sec. 612(a)(1) the Act says: and to do so actually rewards children the that are safe and conducive to learning "A free appropriate public education school intends to punish. School children without kicking disabled kids out? Yes we [shall be] available to all children with should not be put on the street. In the sub- can. Just ask Dr. Mike McTaggart of West disabilities, residing in the State between urbs and everywhere, parents now are usu- Middle School in Sioux City, TA. In just the ages of 3 and 21, inclusive, including ally working outside of the home. one year, the number of suspensions of children with disabilities who have been The history of the new Act, also made nondisabled children went from 692 to suspended or expelled from school." the Act's intentions clear. The Chairman of 156, of which 7 were out-of-school At Sec. 615(k), the Act expressly applies the Senate Committee said that all the suspensions. The number of suspensions this command to any and every disciplinary disciplinary actions allowed under the Act of disabled children went from 220 to zero. action which is authorized by the Act: are get forth in the Act itself and clearly Attendance has gone from 72 percent to "(5)(A) In General. If the result of the indicated what schools can and cannot do: 98.5 percent. Juvenile court referrals went review described in paragraph (4) is ... "This bill brings together, for the first from 267 to 3." the behavior of a child with a disability was time, in the statute the rules that apply to "His philosophy of discipline for all not a manifestation of the child's disability, children with disabilities who are subject to continued on page 31 PAGE 30 3 2TASH Newsletter, Dee. 1997/Jan. 1998 DISCIPLINE
Letter to Chief State School Officers: 1413(a)(3)(B) and, effective July 1, 1998, to know and to adopt both the best continued from page 30 Section 612 (a)(14). The state of the art in educational practices and the best class- the effective education of disabled children room management practices. students is to use discipline as a tool to whatever their disabilities and the knowl- We ask you also to inform the respon- teach rather than [only] to punish." edge of what works in classroom sible officials of the U.S. Department of Edu- "In closing, let's reject the Gorton management [cite, for example Kerr & cation that you count it no favor so cava- amendment and send a message that we Nelson, and Hill Brown's books] far exceeds lierly to advise the states to proceed in a man- can ensure school environments that are what many schools now know and do as ner contrary to the directions of the Act. safe and conducive to learning without the Act's history and its findings show the Thomas K. Gilhool Esq., Judith A. Gran, Esq., gutting the rights and protections of disabled Congress knew and wished to change. Frank Laski, Esq., Barbara Ransom, Esq. children." 143 Congressional Record, No. 62 Quite simply, in its carefully written Public Interest Law Center of Philadelphia page 54403, col. 3 (May 14, 1997) and integrated provisions this Act requires Philadelphia, PA The central consideration in the clear that problems of student behavior, statutory language about discipline is that ultimately and in anticipatory fashion, be Kathleen Boundy, Esq., Eileen Ordover, Esq. articulated by Senator Harkin: "to insist resolved and avoided by using best Center on Law and Education that schools develop positive behavioral educational practices and strengthening Boston, MA approaches and train teachers and provide their education. Punishment is provided for, Dean Hill Rivkin, Esq., Knoxville, TN them with the necessary supports. . . ." but circumscribed by the Act's plain limita- (May 14, 19-97) tions, not by putting children out of school Leonard Reiser, Esq., Janet E Stotland, Esq. Rather than subjecting disabled and breaking their connection to education. Education Law Center children to ten day out of school suspen- We hope you will proceed in accor- Philadelphia, PA 19107 sions, in violation both of the Act and of dance with the Act, and both encourage sound professional practice, we urge you to and enable those schools for which you Reed Martin, Esq, Houston, TX prepare and support your schools as the have responsibility to do so, by adhering to Matthew Cohen, Esq. Act requires to "acquire and dissemi- the Act's notations on the kinds of disci- Monahan & Cohen, Chicago, IL nate. ..and [to] adopt promising educa- pline that may be used andaffirmatively tional practices.. ." 20 U. S. C. Section by aggressively assisting those schools ft'
Evaluations, Eligibility, IEPs & statutes, particularly the federal constitu- sonably exceed the community rate, or if Placements tion (for due process or equal protection the parent's attorney did not provide the continued from page 22 violations), Americans with Disabilities agency the information to which it is Act, Sec. 504 of the Rehabilitation Act, entitled (notice about nature of dispute is paid for by the state, and is confidential and "other federal laws" (including, and proposed resolution). (discussions may not be used in evidence presumably, Sec. 1983 of the Civil Rights Likewise, the parent is still required in hearings or trials). Act). to accept a reasonable offer of settlement or risk losing the fee recovery; and the ENFORCEMENT OF Attorney fees. As to attorney fees, parent will lose the recovery if the RIGHTS although IDEA continues to make them administrative hearing officer or judge available to parents if they prevail against finds that the relief that the parent finally Sec. 615 retains two important rights- a local or state agency, it restricts parents' obtains is not more favorable than the enforcement provisions, but it also makes rights of recovery in important procedural offer or that the parent, having prevailed, significant changes in rights-enforcement, and substantive ways. was not substantially justified in rejecting particularly with respect to discipline and the settlement offer. attorney fees. Amount of fees. A court may award reasonable attorney fees. The "reason- IEP excluded. In a new and limiting Sovereign immunity abrogated. The state able" limitation is not new and still provision, however, Sec. 615 prohibits still may not defend against a suit on the requires the court to base the fees on the attorney fees recovery if the attorney's basis that the state has sovereign immunity, rates prevailing in the community in services related to any meeting of the IEP for IDEA still abrogates the state's immu- which the case arose for the kind and team; however, the attorney's services were nity. quality of the services furnished; no at an 1FP meeting convened as a result of bonus or multiplier may be used to an administrative proceeding judicial action, ADA, Sec. 504, Sec. 1983, and other calculate the fees. In addition, the court or, in the state's discretion, for mediation rights enforcement. The student and may reduce the attorney fees if the parent and if the parent prevails, the parent may parents, after exhausting their IDEA unreasonably protracted the final resolu- recover the fees related to that meeting. administrative remedies, still may sue under other federal rights-granting tion of the controversy, if the fees unrea- 3 ;J PAGE 31 TASH Newsletter, Dee. 1997/Jan. 1998 TASH NEWSLETTER
Priscilla Newton, Editor Policy Statement Executive Board It is TASK'S mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretmy titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASK endorsement. Linda Rammler
MEMBERSHIP INFORMATION Referred by: Name: Address. City/State/Zip:
Telephone: ( ) Fax: ( )
Please Check Appropriate Categories General Membership (individual) $85. (not more than three): Agency/business/university/ ) Administrator/Adult Services college/library/school $190. ) Administrator/Eduction (allows 3 conference attendees at ) Administrator/Other the member rate) ) Adult Service Provider/Staff Self Advocate, Parent, Full Time Student, ) Behavior Specialist Direct Careworker/Paraprofessional/ ) Case Manager Personal Attendant (for whom payment of ) Early Childhood Services full fee would present a hardship) $45. Family (group rate) $130. ) Educator/Teacher Lifetime Member $1000. ) Gov. Personnel (Federal, State, Local) All dues are $15 higher for members outside the ) Higher Education U.S. & Canada. Funds must be submitted in ) Interested Individual/ U.S. Dollars. Advocate/Friend If you would like to charge your membership, ) Legal Services Provider please fill in the necessary information: ( ) Mastercard () Visa () Discover ) Occupational/Physical Therapist re) ) Parent/Family Member Card Number cv ) Personal Assistant Expiration Date oo ) Professional Public Policy Advocate Signature ) Psychologist () I would like to arrange to spread my ) Regular Education Teacher/ payments out. Administrator Enclose 1/3 and you will receive 2 additional ) Related Services Provider invoices at monthly intervals. How did you learn of TASH: Z- ) Self-Advocate 00 ) Social Worker What, in particular, inspired you to join: 0.0 ) Speech/Language Pathologist r4 00 ) Special Education Teacher/Support What other disability organization do you belong cr) Specialist to: ) Staff Development/Trainer If you are applying for a student membership, please provide the following information: ) Student (College/University) Department ) Supported Employment/ Day Personnel College/University 0 ) Other Student I.D. Number ces r`l Anticipated year of completion eiJ ck, ( ) Please check here if you would like us to send a rq MOVING? information about your local TASH Chapter. Please make check payable to: TASH Please notify TASH 'i- Address: 29 W. Susquehanna Avenue, Suite 210 v) of your new address. Baltimore, MD 21204 E Telephone:410/828-8274 Fax 410/828-6706 0 cr) rs1 CO P. BEST COPY AVAILABLE 4
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z BEST COPY AVAILABLE FUTURE CONFERENCE DATES
Upcoming Annual TASH Conference Dates
Many of you have requested information about future dates and sites for the Annual TASH Conference. We've provided a list of the conference dates for the next three years for which we have already negotiated and contracted space. There have been numerous suggestions from members to return the dates of the conference to November. We are currently negotiating sites for 2001, 2002, and 2003. In doing so, we will make every effort to secure dates in November, or at the latest the first week in December. The current state of the travel, meeting, and tourism industry makes it increasingly difficult to negotiate reasonable convention rates. We must consider site availability, preferred dates, and lowest available cost to meet the needs of our diverse membership. Thank you for your input. Please feel free to contact me with any further suggestions or comments regarding the Annual TASH Conference. Denise Marshall, Director of Training and Technical Assistance 410-828-8274 [email protected] 1998 Location: Seattle, Washington Dates: December 2, 1998Pre-Conference Workshops and Opening Reception December 3-5, 1998Annual TASH Conference Site: Seattle Sheraton Hotel and Towers; and the Washington State Convention Center
1999 Location: Chicago, Illinois Dates: December 8, 1998 Pre-Conference Workshops and Opening Reception December 9-11, 1998Annual TASH Conference Site: Chicago Hilton & Towers
2000 Location: Miami, Florida Dates: December 6, 2000Pre-Conference Workshops and Opening Reception December 7-9, 2000Annual TASH Conference Site: The Fontainbleau Hilton Resort and Towers
The California Chapter of The Association for Persons with Severe Disabilities (Cal-TASH) announces its 16th Annual Conference Capitol Connections: Stories and Successes March 26-28, 1998 DOUBLE TREE HOTEL, SACRAMENTO, CALIFORNIA
This conference brings together parents, consumers, teachers, administrators, communication specialists, and others interested in providing support to individuals with significant disabilities. Each year the conference has grown to the enrollment last year of over 600. For more information or to register, please write or call: The Cal-TASH Conference, 6219 Avenida Gorrion, Goleta, CA 93117 (Phone) 805-967-2042 (Fax) 805-683-2482
PAGE 2 TASH Newsletter, February 1998 k INTEREST AND ACTION GROUPS UpdateonTASH's Interest & Action (I&A) Groups EARLY CHILDHOOD INTEREST & ACTION GROUP Beth Brennan and Elizabeth Erwin will continue to be co-coordinators for this I&A Group. The co-chairs hosted an I&A Group meeting during the '97 Annual Conference that was highly interactive and included Pip Campbell, Kat Stremmel, Alan Berger, and others.
Among the issues identified for further dialogue and focus: including those who provide supports for young children to enable them to be included in their natural environ- ments community preschools playgrounds Head Start programs The Early Childhood I&A Group identified the following action goal for 1998: To develop a position statement that encompasses the ethical and practical considerations surrounding issues specific to providing supported opportunities for very young children with significant disabilities and their families to be involved in their natural environments. Additionally, the I&A Group hopes to incorporate that position statement in a compilation of newly written or previously published articles that would provide families and other interested individuals with a starting base of early childhood information for those ethical and practical considerations. For more information or to participate in the group, contact: Beth Brennan, e-mail: [email protected] or Elizabeth Erwin, 201-744-3975 FAMILY ISSUES INTEREST & ACTION GROUP Issues of criticality for this Interest & Action Group have been identified as helping families understand new dimensions of IDEA (particularly accessing general education curriculum); and including families with very young children The Family l&A Group plans to focus on establishing more effective communication links with families (utilizing the TASH Newsletter; the TASH web site; Partners in Policymaking and Parent Training Center networks, etc.) and recruiting family members to attend the 1998 TASH conference and participate in TASH's social justice efforts. For more information or to participate in the group, contact: Barb Buswell, Coordinator, 719-531-9400 LEISURE AND RECREATION INTEREST & ACTION GROUP Cindy Burkhour, Coordinator of the Leisure and Recreation I&A Group, reports that the Group was very active as the TASH representative on the Play Facilities Regulatory Negotiation Committee of the Access Board. The Committee was responsible for developing the ADA accessibility design guidelines for play facilities. In representing TASH, the Leisure and Recreation I&A Group brought forward the following concepts and issues (this is a partial list) ALL play facilities will provide maximum choice of playthings ALL play facilities will provide social play interaction with those on the play structure ALL play facilities will provide full integration of accessible play opportunities throughout the play facilities ALL play facilities will provide opportunity for use by children who have a variety of abilities ALL play facilities will provide access for adults with disabilities to provide support The Leisure & Recreation I&A Group will continue working on the following critical issues in the upcoming year: inclusion strategies for access to recreation; recreation as a related service under IDEA; continue discussions on integration in sports; and access to extracurricula activities. For more information or to participate in the group, contact: Cindy Burkhour, Coordinator, 616-669-9109
Look for updates in the next TASH Newsletter on current work and initiatives by the Multicultural, Paraeducator, and Special Needs Interest & Action Groups!
PAGE 33 7 TASH Newsletter, February 1998 FEBRUARY 1998
Election of Officers: The new slate of officers is as follows: Liz Healey,
FUTURE CONFERENCE DATES PAGE 2 President; Mark Partin, Vice-President; Mike Auberger, Treasurer; Joe Wykowski, TASH INTEREST & ACTION GROUPS PAGE 3 Secretary; and Doug Biklen, Chair of the
FROM THE EXECUTIVE DIRECTOR PAGE 4 Executive Committee. Board Membership: David Belton CHAPTER NEWS UPDATE PAGE 6 resigned from the Board in November. Tim Knoster was the nominee from the 1997 CONFERENCE HIGHLIGHTS PAGE 8 previous election who had the next KEYNOTE ADDRESS BY REED MARTIN ... PAGE 12 highest number of votes. Tim has filled David's vacancy on the Board. MEDAL OF FREEDOM AWARDED 0:2CM 'ME EHE(gWVOWD IDGE2D1i'CX-2 TO JUSTIN DART PAGE 17 BY NANCY WEISS o TASH's Structure: The Board COMMENTS TO DRAFT With all of the excitement discussed the structure that has been in '97 IDEA REGULATIONS PAGE 18 around the annual conference place for two years and agreed that the we sometimes overlook the RESOURCES AND REPORTS ON structurewas cumbersome and seemed to COMMUNITY INTEGRATION PAGE 22 fact that the conference is also the time of makeit more difficult for members to TASH's annual meeting. The TASH participate in committee activities. We are PAGE 25 1998 CALL FOR PRESENTATIONS Executive Board met twice during the going back to the structure that TASH conference, on Tuesday afternoon and members are familiar with - Operating again on Saturday Saturday's meeting Committees and Interest and Action TASH (formerly The Association for Per- opened with a business meeting and Groups (or, what we used to call commit- sons with Severe Handicaps) is an inter- open forum. Accomplishments of note tees), which will continue to operate as national advocacy association of people during the December Executive Board they always have. We will doawaywith with disabilities, their family members, meetings included the added level of "Open Project Groups." other advocates and people who work in the disabilily field. TASH actively pro- A p V Vi'Pp continuedon page 5 motes the full inclusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- v =i WHOM DO I CONTACT?? enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 105 or El For issues of policy, chapter or committee support, or general e-mail: [email protected]. concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] 0 El For information on the conference, regional workshops, or technical 0 t121:1000(9K OUTEMDD.T assistance, call: Denise Marshall, Director of Training and Technical Assis- tance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] 0 OTASH 0For questions about membership, conference registration or exhibiting Stretching the boundaries of what is possible call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or 0 [email protected] 0 Building communities in which no one is 0 El For information on government affairs or fundraisinWdevelopment, call: segregated and everyone belongs; Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 0 Forging new alliances that embrace diversity; 104, e-mail:[email protected] 0 El0 For information on marketing and promotions, permission and reprints, Advocating for opportunities and rights; 0 newsletter submissions or advertising, or publication sales, call: Priscilla 0 0 Eradicating injustices and inequities; Newton, Director of Marketing and Communications, at (410) 828-TASH, 0 0 Ext. 102, e-mail:[email protected] Supporting research and disseminating 0 CI For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, knowledge and information; 0 at (415) 338-6230, e-mail: [email protected] Promoting inclusive education; 0 CI Don't forget to visit TASH's web site at http://www.tash.org 0 P0 0 0 0 0 P 000 000 0 e0 0 0 0 0 0 0 0 0 0 0 0 00 0 0000 0 0 0 000 00 0 0 0 0 0 Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable.Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promotingexcellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Atm: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected].
PAGE 4 TASH Newsletter, February 1998 FROM THE EXECUTIVE DIRECTOR
continued from page 4 How to Accomplish Priorities: o 1998 Newsletter Topics: Newsletter topics suggested for this year include: O Dues Increase: The Board reviewed Strengthen options for electronic the dues structure. National dues have communication. For example, set up list MiCasa; Institutional Closure, and Home/ not been increased since 1990. The Board sews, establish better web page links Health Attendant Care; International and agreed that it did not want to increase with chapters and other organizations, Multi-cultural issues; Human Rights and dues for self-advocates, family members, and use our web site to more effectively the Abolishment of the Use of Aversive students, or other "reduced fee" members. promote knowledge of TASH, its values, Procedures; Leisure/Recreation; Assistive Dues for General (professional) members and the benefits of membership Technology; Criminal Justice/Civil Rights; and the rate for family-group rate mem- Promote a strong message about who and Advocacy, Grassroots Organizing, bers will be increased by $3. The rate for we are by marketing TASH's identity Labeling, Language Use and the Media. agencies (which includes universities, through the use of public relations schools, and libraries) will be increased by initiatives, press releases, and broader and O Operating Committee Reports: $10. The Membership Operating Com- more regular dissemination of information Publications: The Publications mittee is studying whether the cost for Improve internal communication Operating Committee is working on foreign members should be increased to (Board to staff, staff to Board, staff to identifying the next JASH editor. JASH reflect TASH's actual mailing costs. chapters, chapters to staff, etc.) and the Newsletter published a call for Strengthen focus on abolishing the use nominations. A search committee will be formed to make a recommendation to the O Future Conference Sites: It is of aversive procedures through the nearing the time to schedule conference activities of the Positive Approaches Board. Additionally, the Publications sites for the years 2001, 2002 and 2003. Interest and Action Group Operating Committee proposed a new We are scheduled for Seattle in 1998 Conduct more regional workshops policy on advertising, publishing, (December 2-5); Chicago in 1999 Strengthen alliance with SABE (Self exhibiting, reprinting material and rental (December 8-11); and Miami in 2000 Advocates Becoming Empowered) and of mailing lists. This committee also is (December 6-9). Members of the new include more self-advocates in all TASH working on a catalog of publications to Nevada TASH Chapter came to the Board activities be sold through TASH and proposed the meeting to urge consideration of Las Strengthen outreach efforts to other establishment of a new journal which will Vegas as a conference site. The cities social justice groups be available via the Internet. being considered for 2001 are San Establish three new internal Board Membership: The Membership Francisco, Los Angeles and Las Vegas. committees: Finance, Personnel and Operating Committee is working on a For the 2002 conference, the cities under Development member needs survey and a direct mail consideration are Boston and Chicago, membership campaign for the Summer. and in 2003, Orlando is being consid- o Alliance with SAFE: At the Board It was suggested that TASH work on a ered. An effort will be made to hold all meeting, the SAFE National Board made joint membership program with SABE. future conferences the week just before, a proposal which would merge SAFE's Chapter: The Chapter Operating or just after, Thanksgiving. national organization with TASH. TASH Committee held its first Chapter Leader- would carry forward some of the goals ship Training Day at the 1997 conference. o Blueprint for Action: The Board and activities that SAFE had prioritized. It was very successful and a similar "brainstormed" on the development of a The details of this merger are being session is being planned for the 1998 list of priorities and an action plan. This worked on by the two Boards. conference. The priority for the Chapter list is being reviewed by the Board now Operating Committee is to maximize and will be finalized over the next month o Resolutions: The Board is working electronic networking capacity. or two. The draft priorities are as follows: on updating TASH's resolutions. A new Governmental Affairs: The Govern- resolution on Physician Assisted Suicide mental Affairs Operating Committee Priorities: Strengthen the organiza- was adopted. elected Mike Auberger as its Chair. The tion and improve fiscal stability. Specific recommendation of this committee is to actions to include focusing on diversity, o 1998 Activities: Staff updated the focus on IDEA and MiCASA. Efforts will continuing to improve finances, building Board on two new activities for 1998. be made to make materials about IDEA membership, and supporting and TASH will collaborate with the Robert and MiCASA accessible to all TASH strengthening chapters and committees. Wood Johnson Self-Determination Project constituencies. Additional areas of focus Main focus issues should be: to organize a National Conference on include: effecting people-friendly election Educationemphasis on IDEA Self-Determination and Community outcomes, strengthening the voice of Community Livingemphasis on Living (to be held July 9-11 at the grassroots advocates, increasing our MiCASA, Home of Your Own and Minneapolis Hilton and Towers). TASH visibility in Washington, D.C., and Closing Institutions will also produce a quarterly newsletter building alliances with other like-minded Human Rights- emphasis on Assisted on self-determination. Both of these national groups. Suicide and abolishing the use of activities are funded by the Robert Wood aversives Johnson Foundation. 0 39 PAGE 5 TASH Newsletter, February 1998 TASH CHAPTERS (2° 0ID ILLINOIS oping and disseminating information/ N-rv CHAPTER technical assistance for specific critical issues to be identified on an The 1998 Annual State Con- annual basis; and ference of Illinois-TASH, "Strate- TASH 4. Increase participation of indi- gies for Building Supports, for All," viduals with developmental disabili- CHAPTERC\--- will be February 24 and 25, 1998 at the Hyatt vi,ties in community life. Regency Hotel, Oak Brook, Illinois. Pre-conference workshops will take Kris Weingaertner-Hartke, Chapter place on February 23. To make hotel President, reports that Missouri TASH reservation, contact the Hyatt Regency activities include submitting information directly at 630-573-1234 or 1-800-233- to individual legislators, letter writing 1234 (tell them you're with the IL- campaigns and providing support to local TASH conference to receive TASH members. Missouri TASH has conference rates). recently focused on a formal alliance with For more information or to register other organizations to stress the impor- for the conference, contact Mark Doyle at tance of pay equity for community Everyone Is Welcome, 630-584-0970 or providers. e-mail [email protected] Missouri TASH produces a newsletter works with local coalitions to and utilizes a display board at a variety of ElINDIANA CHAPTER increase its membership and the conferences. The Chapter also gives out effectiveness of its work. The Indiana Chapter of TASH stipends to consumers and parents to is planning a one-day workshop attend conferences. The 12th Annual The Chapter publishes a column in in March featuring Dr. Lou Brown. Missouri TASH conference will take place their Coalition newsletter. Middle Lou's keynote presentation is entitled on February 20, 1998 at the Henry VIII Tennessee TASH serves members by "Real Work in the Real World." Hotel in St. Louis. The featured speaker, providing conference stipends and The workshop is scheduled for David Hingsburger will address sexuality information/referral services. Most Friday, March 20, 1998 at Connor Prairie and disabilities. Mr. Hingsburger was a recently, the Chapter has been focusing on in Fishers, Indiana. keynote presenter at the 1997 TASH In the afternoon, participants will supporting People First, Tennessee's National Conference in Boston. disability coalition effort, to move people have an opportunity to take part in a Other Chapter officers include Jean- with disabilities from state institutions series of mini-sessions focusing on Paul Bovee, Vice President; Peter Griggs, into the community. important aspects of an individual's life Secretary; and Peg Capo, Treasurer. For Middle Tennessee TASH also works that contribute to success and personal more information you can contact Kris to support the inclusion of children with satisfaction in the "real world": Commu- Weingaertner-Hartke at 314-569-8454. disabilities in their local public schools. nity Living; Public Education (Ages 18- Other officers of the Middle Tennessee 21); High School Inclusion; and Leisure Chapter include Dara Howe, Vice Presi- UTAH TASH and Social Life. dent; Donna DeSteFano, Secretary; and The Utah TASH Chapter For more information on this exciting Errol Elshtain, Treasurer. is currently focusing on one-day conference, contact Michelle If you would like to contact Linda parent support, student Persinger at 317-255-2564 or Dianna 11involvement and personnel Williams at 812-832-7698. Messamore, please call 615-662-0431 (home) or 615-353-2008 (fax). preparation as their critical issues. We wish Middle Tennessee TASH Martin Agran, Chapter President, informs MIDDLE TENNESSEE good luck with its reorganization efforts! us that dissemination of information to TASH members and other interested persons is Linda Messamore, their primary activity. Utah TASH hopes C1=1:-7 MISSOURI TASH to further enhance their support and Middle Tennessee TASH Chapter President, As a result of a Board involvement with state conferences. reports the Chapter is concentrating on re- Retreat last year, the Mis- Other Utah TASH Chapter officers organizing and revitalizing itself to encom- souri TASH Chapter devel- include Richard Kiefer-O'Donnell, Vice- pass the entire state rather than just the oped Mission and Vision Statements, as well President and Tim McConnell, Treasurer. Middle Tennessee area. as four goal areas. The four goal areas are: Martin Agran can be reached at Utah 1. Increase membership by 50% by July State University, Department of Special Edu- Middle Tennessee 1999; cation and Rehabilitation, 2865 University maintains a Speakers Bureau; 2. Develop a leadership development Blvd., Logan, Utah 84322-2865. provides individual and family plan by July 1998; advocacy; and 3.Influence policy decisions by devel- 0 PAGE 6 TASH Newsletter, February 1998 TASH CONFERENCE
iroto 1091 1997 TASH Conference 00° The 1997 TASH Conference, We the People, All How disability issues fit within the larger the People, was a huge success and contained context of social and economic justice, peace, many memorable, meaningful, and inspira- and non-violence tional moments! We had 2,462 registrantswhich is the highest number of attendees since 1990! The idea of "invisible supports"those who Many participants responded that the conference support people should be so in tune with has been getting stronger, better, and more well- those they support to the point that they are rounded each year. We had over 500 sessions which invisible to others as a paid worker were found to be useful, interesting, and offered a wide variety of information. The merging of "special" and "general" The 1998 Call for Presentations is located in this education - where all students have an issue of the Newsletter on pages 25-28. We hope you individualized education and career plan will submit a presentation for inclusion at this year's conference. If you are not able to present in Seattle, Hands-on ideas for adaptations please pass the form on to someone who may be interested! As you may know, the schedule of sessions Functional curriculums offered largely depends on the quality and diversity of individual proposals sent into the central office. We're More on howless on why counting on you to continue to keep the information current, valuable, and useful. Communicate to presenters that not showing up Here are some of the suggested areas of improve- for a session, or canceling a session due to low ment or growth for future conferences noted by 1997 numbers of attendees, is frustrating to attendees attendees: and does not reflect well on them or the conference as a whole. A plan to have more staff or volunteers around to help folks decide on sessions, locate rooms each An event of this magnitude could not be pulled off day of the conference, and assist presenters to successfully without hard work and dedication from assure they have what is needed everyone involved. Thanks to all of you who made this conference such a tremendous success.I look forward Continue to find ways to improve the conference to working with the membership, the 1998 Conference program so that things are cross-referenced and Committee, the 1998 Local Committee, In-focus Strand easy to find for all. Coordinators, TASH Chapters, TASH Interest and Action Groups, and the TASH central office staff to Strengthen the use of alternate formats for all convene a successful 1998 Annual Conference. Anyone presentations to make them accessible to a wider with suggestions, ideas, or wishing to be part of the variety of attendees. planning committee should contact me: Denise Marshall, TASH, 29 W. Susquehanna Ave, Suite 210, Strengthen the number and variety of sessions in Baltimore, MD 21204; 410-828-8274x103; the following areas: [email protected]. In the meantime, take a few minutes over the next Research several pages to re-visit the exciting sessions and people you encountered during the Boston conference. See Employment you in Seattle!
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PAGE 7 4 TASH Newsletter, February 1998 1997 TAM CONFERENCE
an over sessions...
thiswas oneof the biggest TASH Conferences ever! PAGE 8 42 TASH Newsletter, February 1998 1997 TASH CONFERENCE
4 .
'NO Students from the 0' Hearn School (above and to the right) provided wonderful entertainment...... and we all shared touching moments with old and new friends. 0
Nkosi Asante (pictured left, holding microphone) and members of the New Afncan Voices Alliance offered a stynng tnbute to the life and work of Shaft'? Asante, a scheduled keynote presenter at the '97 conference who passed away in September
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4 3 BEST COPY AVAILABLE PAGE 9 TAM Newsletter, February 1998 KEYNOTE PRESENTERS AND AWARD WINNERS
1997 Conference Keynote _ga resenters
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11114
David Hingsburger
I \ 1997 TASH AWAMS Alice H. Media Awar Film Category: John J. Hayden Award Michalczk, Producer of "In the Shadow of the Reich: Nazi Beth is a doctoral Medicine" candidate in Early Child- This documentary studies the hood Special Education at step-by-step process that led the Kent State University, medical profession in the Third Reich completing her dissertation down the road to genocide of people on the roles and perspectives 4.) with disabilities and other devalued of grandparents of children minorities.It provides the historical with special needs. Beth co- basis for many current dilemmas in taught graduate courses and bio-ethical work. worked on a variety of research and service A. Print Category: Sonny Kleinfield (not pictured), New coordination activities. For York Times the past year, she has served Sonny Kleinfield eloquently put into words the story of as research coordinator for James Velez and his family. Sonny's story captured James' aleargro the Early Childhood journey through institutions, including BRI (Behavior Research Research Institute on . Institute), into the community The recent three day, front page Inclusion at San Francisco Elizabeth Brennan series captured the spirit of the work of TASH members and State University Beth is reached millions of people around the world with both the idea actively involved in TASH on many levels and is co-coordinator of and the process of community inclusion. the Early Childhood Interest and Action Group. 4. PAGE 10 TASH Newsletter, February 1998 1997 TASH AWARDS MORE TASH AWARD WINNERS Positive Approaches Sennett Middle School in Madison, realities, these folks are some of the real Awards Wisconsin. Nancy always focuses on the heroes of IDEA '97: strengths, talents, and needs of her students. She searches out or creates Barbara, Wayne, and Carrie Dyer, positive, cutting-edge interventions, which Deb Kunz, Jamie Ruppman, Tom are individually focused, and have Gilhool, Kathy Boundy, Paula contributed to long-lasting behavioral Goldberg, Sue Pratt, Margaret changes in her students. Nancy is unwa- Burley, Judy Martz, Myrna Ayres vering in her commitment to inclusive Thompson, Frank Murphy, education for all students, including Kathleen Marafino, Barbara those who have displayed the most Wagner, Maureen Hollowell, Judith challenging of behaviors. Nancy has Gran, Laurie Draves, Rene made a tangible difference in many lives, and is an inspiration to the children, Leininger, Kerry Flynn, Lisa Baach, families, and professionals with whom Bill Kienzle, Judith Raskin, Carol For Community: This year's award she interacts. Blades, and Barbara O'Donnell honors James Velez (seated), Fredda Brown, Lisa Pitz, Fredda Rosen, and Sonny Kleinfield (not pictured) They are honored for pursuing against all odds, a life in the community for James, who was institutionalized for years and received contingent electric shock in the name of treatment. James Velez, along with this family, advocated for an apart- ment of his own, and an effective, positive, . system of supports. Lisa Pitz and Fredda stiMPFC Rosen devoted extraordinary energy toward helping James secure funds, find a place to live and work, and to identify a team to support him to achieve his dream of a life of his own. Sonny Kleinfield told Some of the recipients of the Collaboration Award (L-R) Judy Martz, Judith Gran, Carrie and Wayne Dyer, Sue Pratt and Jamie Ruppman. James' story in a way that communicated to the world the importance of inclusion, diversity, and the importance of respectful Collaboration Award Special Award supports. The 1997 TASH Collaboration Award Nancy goes to a group of committed people who Zollers is For came together from around the country pictured Inclusive to assure that the Individuals with with Aaron Education: Disabilities Education Act (IDEA) Feuerstein, Nancy who Caldwell- continued to guarantee all children the Korpela right to a free and appropriate education received a special TASH is in the least restrictive environment. This pleased to group advanced the voices of families award from TASH for his commitment to his honor Nancy, from outside of the beltway who were workforce, the community of Lawrence, who is an being drowned out by the din of Wash- extraordinary ington politics. MA, and to inclusive communities. teacher at Standing in the face of political 0 PAGE 114 ' TASH Newsletter, February 1998 1997 CONFERENCE KEYNOTE 1997 TASH Conference Keynote Address
BY REED MARTIN and what we've all seen is an awful lot of about behavior that impedes a child's states that think the short title of this Act is learning or those of others around them. Reed Martin has repre- the Business as Usual Act of 1997. I'm So even before we get into something that sented individuals with here to tell you we are not going to let is negative like punishment for misbehav- disabilities for over 25 anyone get away with that, particularly the ior and things like that, we are dealing years. With the publi- Office of Special Education and Rehabilita- early on with things that will support the cation of his book, Edu- tive Services (OSERS). To go back to our teacher and enable him or her to keep the catihg Handicapped theme of change, we must emphasize that child in the classroom and reach that Children: The Legal enforcement must occur at the federal child. The new requirements in the Mandate in 1978, he be- level. There's going to have to be a report individual education plan (IEP) say that came recognized as a to Congress from the OSERS and from the we have to have "a statement of special national voice in special Department of Education which also education and related services, supple- education law and has testified at the request of includes the Office of Civil Rights (OCR) mental aids and services, program Congress and the U.S. Commission on Civil on their increased enforcement activities, modifications or supports for school Rights on disability issues. TASH was honored as well as an annual report on what they personnel." That tells me an awful lot of to host Mr Martin as one of its keynote speak- are doing to enforce those statutes. rich services are going to be coming into ers during the 1997 TASH Annual Conference I feel like we need to report to the classroom, not moving that child out and offers excerpts from his keynote address. Congress, as well. I'm involved in one of the classroom. So we need to make complaint in progress right now in West sure that we win what the promise of There were some dramatic changes in Virginia where we have really got the that law is for all of our children. the IDEA, and Congress clearly listened to goods on the state and a local agency, and We also feel very positively about this organization (TASH) and a lot of the feds came in and danced all around it changes in the statute in regard to parents and advocates around the country. and seem to have missed the things that misbehavior. We finally have put in the We were very afraid for the last 2 years of we had pointed out to them. On our web statute the requirement that we make a possible negative changes to the IDEA. site we are soliciting from around the decision whether the misbehavior is Two years ago I thought any changes were country examples of failure to monitor at willful and, therefore, punishment in the going to take away, take away, take away. I the state and federal levels. Congress has colloquial sense would change that know a lot of us thought that.But mostly said they want the federal government to behavior, or is it one of two other alterna- the changes were positive because of the report to Congress on enforcement, or lack tives. Is the behavior simply a manifesta- role TASH and others played in informing of enforcement, and I think we need to tion of the child's disability? That is, the Congress. Much of the statute has report to Congress, too. I'm planning to child is not misbehaving; they are being changed in a very positive way by pulling do my own report at the end of this year, what they are in the classroom, and we into the statute things that had been in the hopefully with the help of a lot of you, on need to address that to make it work with regulations for many years, but parents whether OSERS and OCR have, in fact, the other children. It's simply a manifesta- hadn't really had effective access to been enforcing the law. tion. Or has Congress now recognized because schools would say "this and that is There will be new enforcement in the statute that the problem of this not in the statute." visibility at the state education agency child's functioning in the regular Also, Appendix C to the regulations level: a requirement that when a complaint environment may be the inappropriate- under the IDEA had been in existence is filed, the state carry out investigations, ness of the program to enable that child since 1981. Appendix C had been quoted issue a written decision, provide technical to function appropriately in a regular by every circuit court in the United States assistance to the local education agency, environment? Either of these lead to a but, again, parent after parent that I talked and provide corrective actions, including functional behavioral assessment, and a to who I had sent to an IEP meeting got compensatory education. The changes plan a very positive plan for blown off as they heard time and again, that have been made by the statute dealing behavioral intervention. "well it's in Appendix C, use Appendix C." with instruction are very positive.They Now once we get these plans, these Well, the Congress put so much into really support teachers and anything that behavioral intervention plans, they rule Appendix C, the regulations, and the court is going to be instructive for our kids is discipline in the local building. I don't cases that it really does codify a great deal going to have to support classroom person- care about school based management, and of growth over the last 20 years. nel, related service personnel, and others. "I'm my own plan" and all of these So the real question is, will anybody In regard to behavior, the remarks attitudes that I run into with some of these enforce it? Will the Federal Government that Rud Turnbull made yesterday were administrators. Regular education enforce it?Will the local districts actually very good. We must begin to deal very administrators can't intervene once we enforce it? I've been in 27 states since positively at the very earliest stage with have a behavior intervention plan. The June 4th when the Act was signed into law behavior problems. The statute talks continued on page 13 PAGE 12 4 6 TASK Newsletter, February 1998 1997 CONFERENCE KEYNOTE
CONFERENCE KEYNOTE Amendmentsand I had to re-read it that can explain the notice and the several times and throw cold water on procedural safeguard rights to the parent ADDRESS myself when I read itare we're going to must be identified. Instead of having the continued from page 12 have accountability on the IEP The two parent get the notice and say this doesn't statements that I get from parents who tell me anything, I don't understand it, the call me from all over the country is we're notice itself is going to have to name an "Twenty-three years ago on the not sure if our IEP is working or if it's organization, name an entity, name a day of passage of the Education for being implemented. Parents may think group that will be able to explain those All Handicapped Children Act, it's a good IEE but they're just not sure if procedural safeguards. That group, Senator Stafford said 'this thing it's working and they don't have a method whether it's the Parent Training and that we do, then, is not only an act of finding out. They go to school, they Information Center, TASH, or a local of law for equality and education, look for records, they try and talk to group that's started up, will hopefully use but an act of love for those people and they are put off until the next the parent's concern to work through not extraordinary children wishing IEP meeting. But what Congress has only the procedural safeguards, but what only to lead ordinary lives.' ... now required for every child on an IEP problems or issues concern the parent. make the '97 Amendments live up is a written report on progress under Another problem-solving aspect of to that same promise." that IEP, as often as we make written these amendments and there are quite reports on non-disabled kids. a few more is that with every hearing Every 6-9 weeks we're going to be request now, states have to offer media- teachers have to follow those behavior getting those kinds of written report cards. tion. If the parent doesn't want to go intervention plans and they are aimed at So the key for us to be able to understand through mediation, the requirement is that being positive. I've worked in some it is for the IEP to contain measurable they have to be put in touch with a group classrooms where they really weren't.It's goals and measurable short-term objec- (again it could be a Parent Training Center, amazing how much misbehavior begins to tives. And then, if there is not expected TASH, whatever), so they can talk about disappear when all students are treated progress at each of those measurement the benefits of mediation. Now, I hope with dignity. So we really know how to do periods, 6 or 9 or however many weeks, that once the parent who has asked for a these positive behavioral plans. What we the Congress requires the IEP team to be hearing is put in touch with someone who have to do is make sure the local educa- re-convened to answer the question of can talk about mediation, two things tion agency and the state education agency why there is not expected progress toward might happen. First, they might get the provide the services to the classroom, to the annual goal. Really revolutionary. We information from folks like you who are the teachers, to the related service and used to have to fight, yell, scream, all sorts experienced and they will be able to solve instruction personnel. of things to get any re-attention to any part their problem short of going through We had in the law for the last 22 years of the ID? Now it's going to be offered to the full blown hearing. Second, if they de- a comprehensive system of personnel us very easily on these report cards. We, cide to go forward with mediation, they now development whereby any local teacher, of course, need everyone to learn to write have someone with experience who might related service person, regular education a behaviorally descriptive 1EP, or else it's be able to help them go to mediation and person, whoever it may be, can draw on going to be thrown away because a solve the problem short of going to a hear- all that we've learned and also tap into the measurement of "doing as well as can be ing. I'm a lawyer who's on a one-person cam- inter-agency agreements which states must expected" is not going to help. paign to keep parents from ever having to have had in place [for the last 23 years] There are new problem solving go to a lawyer to get their problem solved. I and which assure an adequate supply of mechanisms in the IDEA Amendments. think we lawyers ought to support these new appropriately trained personnel. So we I'll mention just two. New things in the problem-solving mechanisms. need to make sure.that our local districts notice. I really urge parents to go out and I will be doing a national conference and our state education agencies stop ask now for notice to be given to you as to this summer to come up with strategies to cheating our teachers. We need to give changes since June 4th It has to be given use these IDEA Amendments. I'll be the teachers what they are entitled to, to you before an IEP meeting. It has to be getting a lot of information out to folks which is the knowledge from around given to you before certain other points, and information will be on our web site. the country of how to deal with a but it has to be available for the asking. I Just for fun's sake we've named this particular child in a particular setting in have on my web site an article called summer's conference Nationwide Alliance a regular kind of environment. If we give "Have You Noticed Your Notice Lately?" of Special Education Advocates and them the assistance we know we can, we and it is being reprinted all over the Attorneys. We chose that name because can make those teachers positive behav- country in parent newsletters. If you want the acronym is NARA SEA. So those are ior managers rather than have those teach- to locate the notice, my address is in the the kind of strategies we will be pursuing. ers have to rely on removal and more puni- TASH conference program book. I would Now the least restrictive environment tive kinds of techniques. love to hear from you and get you in touch (LRE) is also dealt with in a very impor- Now another very important change with that. But the key problem-solving tant way. I find whenever I talk about this the most radical change in the 1997 item in the new notice states that a group continued on page 14
PAGE 13 4 TANI Newsletter, February 1998 1997 CONFERENCE KEYNOTE
CONFERENCE KEYNOTE The 1997 Amendments hand us some- according to Congress, what really makes ADDRESS thing that we really need to work with. sense out of anything we do in special The '97 Amendments say "the IEP team education. If what is being done with continued from page 13 shall consider the communication needs of your child in school today is not related a lot of people don't understand what the child and consider whether the child to one of those four goals, then why are restrictive means in LRE. It really comes requires assistive technology devices and we wasting your time? If it isn't going to out of the 14th Amendment to the Consti- services." Does anybody sense FC pay off for independent living, if it's not tution and out of a U.S. Supreme Court (facilitated communication) in there going to pay off for independent or case from 1954, not Brown v. Board of somewhere? Every child, no matter what supported employment, if it's not going Education. The Supreme Court said when their diagnosis, has to consider assistive to pay off in getting access to further we have more than one way to accomplish technology and consider communication education or training, and if it's not going a legitimate governmental objective, we needs and deal with LRE. For many to pay off in getting access to recreation have to use the least restrictive means to children, that assistive technology is going and leisure in the community, then we're accomplish that legitimate governmental to be some kind of communication device. wasting that youngster's time because I objective. And the term restrictive means Now the '97 Amendments also assure you every goal academic, restriction on access to what every other reemphasize inclusion as a goal and educational, communicative, whatever person in that group enjoys. It means inclusion is all encompassing. Congress and I've done a lot of IEPs, fit under equal protection of the law has dealt with inclusion really heavily with those four global goals. What the Congress has enunciated in the 1990 Americans with Disabilities Act Now one clear route to attaining those talking about least restrictive environment (ADA), the 1990 IDEA Amendments, the goals has to be self-advocacy and the ADA is the regular curriculum and the regular 1992 Rehabilitation Act Amendments in 1990 really hammered self-advocacy. environment. So we're going to be (especially with attention to Section 504), The 1992 Rehabilitation Act really looking at does a child get to school with the 1994 School to Work Opportunities hammered self-advocacy and the 1997 the same transportation that other Act, and in dealing with all of that they IDEA Amendments have really hammered children are given access to. When they keep going back to the ADA. In 1990, self-advocacy It's very clear that we want arrive at school, do they mill around like Congress was about to pass an omnibus to teach persons to speak for themselves, the other children, or are they told to bill that would deal with every aspect of communicate for themselves, take more report to someplace that is too restrictive a being disabled. It wasn't just looking at control of their lives. means to accomplish that legitimate special education, it was about every These are just a few of the significant governmental objective? Do they change aspect of disability discrimination in changes, just a few. And a few things are classes with other children, do they go to America. Congress commissioned Louis not that good but we are going to be recess with other children, do they go to Harris, the pollster, to look at that and he working to work around them. Many lunch with other children, do they have did a magnificent poll, really voluminous, more things that are very significant I access to all of the courses that everyone dealing with special education. He was haven't even touched on. We've been else is offered? We have to make sure that looking at had special education paid off. worried for 20 years that Congress would we remove anything that is too unneces- That was 1990, that was 15 years after the come along someday and make signifi- sarily restrictive.It's more than just LRE. Education for All Handicapped Children cant changes in the Education for All Environment sounds like a street address. Act was passed in 1975. What have we Handicapped Children Act, and now it's It's every element of the day that we have done for all of these youngsters, children, happened and I think it's up to us to an opportunity to free children up and give and young adults with disabilities? What make sure that we make it work for us. them access to what everybody else has. Harris found really caused Congress a lot Twenty-three years ago on the day of pas- Another Supreme Court case in 1975 of pause because the typical graduatenot sage of the Education for All Handicapped talked about how you can be too restric- everyone but the typical graduate was Children Act, Senator Stafford said "this tive in school if you do something that not prepared for independent living. The thing that we do, then, is not only an act causes psychological harm to a child or typical graduate was not prepared for of law for equality and education, but an causes a feeling of worthlessness in that independent employment, or perhaps act of love for those extraordinary chil- child. That violates the 14th Amendment's even employment without some degree of dren wishing only to lead ordinary lives." equal protection clause. We have to assistance. The typical graduate was not With this organization, I think we will be realize the way teachers, related service prepared to get access to further education able to make the '97 Amendments live up personnel, and other administrators or training in order to hone some particu- to that same promise. Thank you. interact with youngsters may cause too lar skill, and the typical graduate was not restrictive a means to accomplish a prepared to get access to recreation and Reed's web site is located at legitimate governmental objective even leisure in the community http://users. westco.netkconnie, or you can though the school thinks it's got the child So in 1990 Congress changed the send an e-mail to [email protected] Of course, you can also contact him the old- in the right "street address" in the LRE. law in the IDEA by providing for transi- fashioned way - (304) 296-1187! For many people, the key to access to tion services. What we have to realize is the LRE is going to be assistive technology. that those 4 global goals are now, 0 4 8 PAGE 14 TAM Newsletter, February 1998 1997 TASH CONFERENCE
Many thanks to all of the wonderful exhibitors who helped to make this year's conference a huge success!
Able Net Federation for Children with Spe- Laureate Learning Systems, Inc. REM, Inc. AFB Press/American Federation for cial Needs Lesley College Roots & Wings Educational the Blind Garaventa USA, Inc. LR Consulting Catalog APSE: The Association for Persons Gary Lamb Music National Library Service BPH Sentient Systems Technology in Supported Employment InclusionInternationaland National Lifetime Assistance Cen- Seven Hills Foundation Attainment Company, Inc. UNESCO Special Needs Edu- ters, Inc. Supported Living Technologies Bell Atlantic cation National Professional Resources, The Disable Hotline Bible Alliance Inclusion Press Inc. The Mood Disorders Network Brookline Books, Inc. Institute for Community Inclusion New England ADA Technical Assis- The Nth Degree Brookes Publishing Company Institute on Disability/UAP tance Center The Puppet Petting Zoo CARF ...The Rehabilitation Ac- Insurance Professionals of New On-Line Connection to the 1998 Visions for Independent Living creditation Commission England, Inc. International People First Watersun Publishing Company, Inc. Center for Community Inclusion, International Ret Syndrome Asso- Conference Woodbine House UAP ciation Peak Parent Center Words + Inc. Center on Human Policy, Human Jewish Family & Children's Service Program Development Associates Policy Press If you would like information on Cole Vocational Services any of the 1997 conference exhibi- Diverse City Press tors, contact Rose Holsey at 410- Fanlight Production HI/3 828-8274 ext. 100.
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COPY AV PAGE 15 4 9 TANI Newsletter, February 1998 FEBRUARY 1998
The Hattie Larlham Foundation in collaboration with Rainbow Babies and Children's Hospital TASH wishes to of University Hospitals Health System present acknowledge the generous support of our Fetoal newest lifetime members Vz4z44.% '19 Tuesday and Wednesday, March 10 & 11, 1998, Sheraton Suites Hotel, Cuyahoga Falls, Ohio
Join us for a comprehensive review of the forces affecting JACQUELINE THOUSAND individuals with special needs. Keynote presentations include a discussion of sexuality issues related to individuals with NANCY ZOLLERS disabilities by reknown author and lecturer Dave Hingsburger, and a detailed overview of managed care by Amy Gerowitz, * * * * president of Outlooks, a Cincinnati-based consulting group. Additional sessions will address topics such as: Lifetime membership entitles you to full international and chapter member benefits for 0 Rights/People-Centered Language 0 The Ethics of Examination your lifetime. The cost can be remitted over 0 Dealing with Multiple Physicians several monthly payments. If you are interested in 0 Seizure Disorders 0 Family Stress & Sibling Support becoming a lifetime member of TASH, 0 Special Education & more... contact Rose Holsey at 410-828-8274, ext. 100. If you would like to receive a conference brochure, contact Kim Skelley, Hattie Larlham Foundation, (330) 274-2272.
Teetaoaitiemea Invitation for Submissions
About the Series Innovations is a publication of the American Association on Mental Retardation that brings research to practice. Designed for busy practitioners, Innovations translates research findings into clear, usable ideas. Each issue is devoted to one topic. Recent issues have included:
Teaching Students in Inclusive Settings by MaryAnn Demchak Teaching Self-Management to Elementary Students by King-Sears 8c Carpenter Designing Positive Behavioral Support Plans by Bambara 8c Knoster Increasing Variety in Adult Life by Daniel Steere
Call for Contributors Submissions of proposals for the 1999 series are invited. Potential contributors are requested to prepare a 2-3 page proposal including a description of the topic and its importance, an outline of the content and references. If a proposal is accepted, a full manuscript will be invited for review The deadline for the next round of review is April 1, 1998. Mail 8 copies of the proposal to Diane Browder, Editor of Innovations, Lehigh University, 319A Iacocca Hall College of Education, Bethlehem, PA 18015.
PAGE 16 50 TAM.' Newsletter, February 1998 FEBRUARY 1998
JUSTIN DART Recipient of the Presidential Medal of Freedom
n Martin Luther King's in the nation to elevate disability rights to the mainstream of birthday (January 15), i political discourse." President Bill Clinton awarded the Medal of Freedom our nation's The formal citation recognizing Justin read: highest civilian honor to Justin -The purpose of human society' Dart has said 'is to em- Dart, Jr. in a White House East Room power every individual to live life to his or her God-given ceremony. A fitting tribute to "a real potential.' He has made that purpose his own. Since contracting soldier of justice," it was also a polio as a young man, he has worked for the independence, JustinDartJr. landmark event: the first Medal of inclusion and empowerment of people with disabilities. A Freedom recognition for any member of the disability rights leading architect of the Americans with Disabilities Act and a movement, driving force behind its passage, he has had a profound impact In presenting the Medal of Freedom to Mr. Dart, President on the public policy of this Nation. Justin Dart has earned our Clinton said: "Justin Dart literally opened the doors of opportu- thanks for helping us recognize the possibility within each nities to millions of our citizens by securing passage of one of the individual and for tenaciously advocating equal access to the nation's landmark civil rights laws, The Americans with Disabili- American Dream for all our people."
ties Act. . . . At the University of Houston, he led bold efforts to TASH proudly joins President Clinton and the Nation in promote integration. He went on to become, in his own words, saluting our uniquely gifted leader, supporter and friend, Justin 'a full-time soldier in the trenches of justice,' touring every state Dart, Jr.!
Mothers of Adults with Developmental Disabilities: **Are you age 55 or older and sharing a home with your adult son or daughter with a developmental disability?** DO YOU HAVE CONCERNS YOU WANT TO SHARE? The Center on Aging at Bradley University wants to learn more about your family by conducting a confidential telephone interview with you. The interview will focus on the challenges and rewards of living with an adult son or daughter who has a developmental disability.
Knowledge gained from this study has the potential to influence services and policies for your family. For more information call 1-800-244-4470 or write the Center on Aging, Suite 418, Jobst Hall, Bradley University, Peoria, IL 61625 g:weilte..-
PAGE 17 5 I TASH Newsletter, February 1998 DRAFT 1997 IDEA REGULATIONS
As reported in the December 1997/January 1998 edition of the TASH News leiter, the changes in IDEA '97 require the U.S. Department of Education to write new regulations for implementing the law. The 90- day comment public comment period to respond to the draft regulations expired January 20, 1998. TASH received many comments and opinions on the draft regulations from our members. Thank you for your valuable input. We hope together our comments can help forge a stronger set of implementation criteria. A copy of the comment letter issued by TASH to Thomas Irvin in the U.S. Department of Education's Office of Special Education and Rehabilitative Services follows.
January 20, 1998
Thomas Irvin Office of Special Education and Rehabilitative Services U. S. Department of Education Room 3090 Mary E. Switzer Building 330 C Street, S. W Washington, D.C. 20202
Dear Tom:
Enclosed please find the comments of TASH to the Notice of Proposed Rulemaking concerning the regulations governing 34 CFR Parts, 300, 301, and 303 (Assistance to States for the Education of Children with Disabilities, Preschool Grants for Children with Disabilities, and Early Intervention Program for Infants and Toddlers with Disabilities). TASH actively promotes the full inclusion and participation of persons with disabilities in all aspects of life. TASH believes that no one with a disability should be forced to live, work, or learn in a segregated setting; and that all individuals deserve the right to direct theirown lives. TASH's mission is to eliminate physical and social obstacles that prevent equity, diversity, and quality of life. TASH fought valiantly to assure the rights of all children were protected in the IDEA '97. Following are specific areas of importance to TASH. These comments were developed by the Center for Law and Education and endorsed by TASH.
ISSUES: General CurriculumThe relationship of curriculum to content should be tied to LRE (least restrictive environment). Incorporate into Section 300.12 and amend it to reflect that the definition of "general curriculum," while relating to "content" of instruction, include the maintenance of the provision of least restrictive environment, including justification for removal when appropriate. BehaviorIn reference to Section 300.22(b) Related Services: Define "functional behavior analysis" and "positive behavior support." Given the emphasis of the Amendments on effectively addressing behavior, a separate set of regulations should be developed. TASH recom- mends the adoption in full of the Beach Center's guidelines on behavior support: Model statute/regulation/technical assistance guidelines on Positive Behavioral Support for Students with Disabilities Who Have Impeding Behaviors. Special EducationSpecial education is a set of services, not a place or a curriculum. Please add the language "supports and related services" whenever special education is mentioned and incorporate that language throughout. CSPD (Comprehensive System of Personnel Development)Incorporate the note that references the establishment of procedures for the acquisition and dissemination of "significant knowledge derived from educational research and for adopting, where appropriate, promising practices, materials and technology" into Section 300.135. Additional language should be added which ensures acquisition and dissemination include (but not be limited to) parents, school boards, parent training information centers, etc. MonitoringEnforcement, as outlined in the IDEA Amendments of 1997, needs to be more clearly delineated. There are no assurances that referrals to the Department of Justice will bring us any closer to the realization of the "promise." Regulations need to be very explicit about the expectations and consequences. FAPE (Free and Appropriate Public Education)The statute states that "under the Act...there must be policies and procedures to ensure that FAPE (free appropriate public education) is available to all children with disabilities...including children who have been suspended or expelled from school." TASH rejects the Department's definition of "children who have been suspended or expelled from school" as limited to those who have been removed "for more than 10 school days in a school year." This is contrary to both the plain language of the statute and clear Congressional intent that there will be no denial of FAPE. Thank you for your efforts and shared concerns. TASH appreciates the Department of Education's consideration of our views.
Sincerely,
Liz Healey TASH Board President 52
PAGE 18 TASH Newsletter, February 1998 1998 LEGISLATIVE AGENDA
GOVERNMENTAL AFFAIRS AND LEGISLATIVE ISSUES FOR 1998
The work of TASH is led by our members. We use the participate in a process that ultimately led us to identify two key foci annual conference to seek important input on our that will enable TASH to "work smart" this year AND impact our most governmental affairs (GA) activities. The GA Strand allows critical issues. It was very clear to all that we need to focus on moni- our members to get the latest information on relevant issues, and toring and enforcement of the Individuals with Disabilities Act of 1997 then provide input into our work for the coming year. and the passage of the Medicaid Community Attendant Services Act, At the 1997 TASH conference, we were able to offer a GA strand HR 2020 (MiCASA). HR 2020, which was introduced by Speaker of which included over 20 topics related to governmental affairs and the House Newt Gingrich (R) last year, will give true choice to all public policy These included a number of sessions on IDEA '97, the Americans at risk of institutionalization in nursing homes and other Medicaid Community Attendant Services Act, HR 2020 (MiCASA), facilities, as well as those already incarcerated in institutions and nursing Assisted Suicide, Americans with Disabilities Act (ADA), Technology homes. and Grassroots Organizing, Supplemental Security Income (SSI) is- Once the key areas were agreed to (unanimously!), the recom- sues, the Rehab Act and many others. The sessions are designed to mendations were then presented to the TASH Board of Directors and give information that brings all attendees "to the same page" on the accepted. TASH will focus on IDEA implementation and passage of critical issues affecting children and adults with disabilities. HR 2020 (MiCASA) during 1998, under the guidance of the GA Op- After two days of delivering information, the final day of the con- erating Committee's newly elected chair, Michael Auberger. ference is spent seeking input from our members on TASH's direction We are all very excited to see the process of receiving meaningful for the coming year, and then setting the agenda accordingly. For the input from our members unfold in a very powerful course of direc- second year, we have convened action planning sessions with mem- tion. We offer our thanks to everyone who has participated and will bers to identify our critical issues and develop a joint proposal for participate in the coming year to achieve our common goals. strategically addressing these issues. This "needs list" and recommen- The recent December '97/January '98 issue of the TASH Newslet- dations are then forwarded to the Governmental Affairs Operating ter focused on issues related to IDEA '97. If you have comments around Committee which, in turn, reports to the TASH Board of Directors to either of these issues, or would like to participate in TASH's Govern- seek approval for the upcoming year's agenda and the commitment of mental Affairs Interest & Action Group, please contact Marcie Roth, resources to achieve the goals outlined. Director of Governmental Affairs and Public Policy at 410-828-8274, A dedicated group of people gathered and spent a considerable ext. 104 or send an e-mail to [email protected] amount of time identifying the needs. We were all very excited to
Special Education Service Agency ANCHORAGE, ALASKA The Special Education Service Agency currently has two va- with moderate/significant disabilities and extensive course work cancies for an Education Specialist in the following areas. For in orthopedic and other health conditions; minimum of three years more information about our organization, contact our website at recent experience working with learner with orthopedic and other http ://www.sesa. org. health conditions; Education Specialist - Autism Spectrum Disorders: Mini- Experience Needed: (1) Developing augmentative commu- mum Qualifications: Master's degree in education with emphasis nication systems; (2) current teaching knowledge using assistive on learners with autism spectrum disorders or Master's degree in technology; (3) ability to work collaboratively and independently; education with emphasis on the learner with moderate/signifi- (4) qualify for Alaska DOE Special Education Type A Certifica- cant disabilities and extensive course work on autism; minimum tion. Excellent health, ability to travel extensively and indepen- of three years recent experience working with learners with au- dently in rural/remote Alaska. tism spectrum disorders. Preferred Experience: (1) Working with preschool through high Experience Needed: (1) developing communication-based sup- school age ranges; (2) working across student ability levels; (3) ex- port strategies; (2) teaching social interaction and play skills; (3) perience and/or training with students who are medically fragile; developing programs to enhance communication skills; (4) current (4) experienced and/or training in traumatic brain injury; (5) train- knowledge of assistive technology; (5) knowledge of current re- ing professional and/or para-professional educators; (6) inter-agency search and range of educational practices in the field of autism; (6) networking and collaboration. qualify for Alaska DOE Special Education Type A Certification. Ex- For more information about employment or to submit a re- cellent health; ability to travel extensively and independently in rural/ sume and letter of inquiry, please contact: remote Alaska; ability to work collaboratively and independently Ron Jones, Program Administrator Education SpecialistOrthopedic/Other Health Condi- Special Education Service Agency tions: Minimum Qualifications: Master's degree in education with 2217 E. Tudor Road, Suite 1, Anchorage, AK 99507 emphasis on learners with orthopedic and other health condi- 907-562-7372Fax: 907-562-0545 tions or Master's degree in education with emphasis on the learner e-mail: [email protected]
PAGE 19 5 3 TASH Newsletter, February 1998 1997 TAM CONFERENCE
TASH's 1997 Annual Conference was dedicated to ingly, have guided his extraordinary Gunnar Dybwad. Gunnar is a long time friend and lifetime work with parent groups, self- member of TASH. As a life-long advocate for the rights of advocates, organizations, and people people with disabilities, Gunnar has set the course for and projects around the world. progressive and humane approaches to supporting people In Gunnar and Rosemary's with disabilities around the world. honor, TASH established The A professor emeritus of sociology at Brandeis University, Gunnar and Rosemary Dybwad Gunnar has dedicated his life to increasing international International Self-Advocate Scholar- understanding of issues of inclusion and the empowerment ship Fund, which will provide of individuals with disabilities. Gunnar, and his late wife, monetary support for self-advocates Rosemary, have worked tirelessly to assure better futures for from around the world to participate people with disabilities. It was once said of them that their in the annual TASH conference and output was ten times the work of any other two people. other opportunities for teaching, learning and advocacy. Gunnar's delightful sense of humor, his abiding regard If you would like to contribute to the Dybwad Interna- for people with disabilities and their families, his exhaustive tional Self-Advocate Scholarship Fund, please contact Nancy knowledge of the field, and his ability to act uncompromis- Weiss at 410-828-8274, ext. 101. 7-hanh Oursincere thanks to the 1997 Conference Volunteers We couldn't have done it without you! Heloiza Acioli Theresa Gordon Chevelle Raynor Selena Allard Sue Hale Maura Reed Yolanda Alvarez Megan Haley Michael Reynolds Jessica Andersen Linda Hertel! Laura Rogers Sherrie Anderson Katherine Honey Christopher Rattler Lisa Badway Tandra Hunter Kellie Rowe Rhonda Boger Young-Joo Jun Donna Rubenoff Debbie Boyce Michelle Kane Yasuyuki Sakurai Jennifer Brown Nadine Lada Jacqueline Shatos Kristin Carlson-Reno Janice Layton Polly Sherman Soya Carter Melanie Left Anthony Sirignano Pat Chester Deirdre Lomon Kathy Sixx Brian Cox Heather Mc Cannel Cheryl Smith Dawn Cummings Mary Malone Ron Spoelstra Caroline Delori Jessica Massa Stephen Stewart Cynthia Doermann Denise Miller Yumiko Sugiura Meghan Donahue Kim Molle Akihiro Takamatsu Melissa Drimer Kelly Montague Jessica Taylor Nancy Edelstein Emily Nusbaum Kaname Ueno Amanda Escue Chie Ogasawara Martha Underwood Kate E. Farrare Hiroe Otsuka Virginia Vazin Charlene Frederick Rie Otsuka Helen Virga Sue Fuller Steve Parsons Laura Whelan Jane Goff Trista Poland Catherine Woods Marcie Goldstein Gloria Pound Karen Zimbrich PAGE 20 TASHNewsletter, February 1998 FEBRUARY 1998
DIRECTOR Delaware Statewide Assistant Professor-Special Education Autism Program )97UC3128) Special Education (emphasis, Moderate to Intense Certification Program), Assistant Professor, Tenure Track, beginning September 1, 1998. QUALIFICATIONS: Requirements include an earned doctorate in special education or related The Christina School District, the administering field, eligibility for certification in the State of Ohio in the area of moderate and intense needs, direct involvement with children exhibiting moderate to intense needs, experience in urban district for the Statewide Autism Program, is seeking an public school settings with linguistically or culturally diverse students, evidence of college teaching outstanding individual to provide leadership to the competencies, emergent leadership skills, student mentoring skills and a well defined research agenda. Candidates will demonstrate academic background and experience in supporting school Autism Program. Doctorate in Psychology or Excep- age children with moderate to intense needs in behavior cognition and language develop- ment. tional Children is required. Experience with students RESPONSIBILITIES: Teach graduate courses in Special Education (with an emphasis in the area of behavior management with school age children with moderate to intense needs in with autism and/or related significant disabilities. behavior cognition and language development), engage in scholarly inquiry advise students Position is twelve months, with an approximate salary of with regard to certification requirements, work in field settings, assume program leadership positions as appropriate and engage in professional, university and community service. $80,000 to $85,000. Criminal background check and SALARY: Competitive and dependent upon preparation and experience. BENEFIT PACKAGE: Includes State Teachers Retirement System; Medical Insurance Options; drug screening are required prior to employment with Dental Insurance; Time Life Insurance; Disability Insurance; Family Life Insurance; Family Life the District. Insurance; and Tuition Remission for dependents. LOCALE: The University of Cincinnati, the second largest comprehensive research institution Anticipated starting date will be May 1, 1998 or in Ohio, has an enrollment of approximately 35,000 students and offers degrees through the doctorate. Located in the historic gaslight district of Clifton, the University is only ten minutes other mutually agreeable date. from downtown Cincinnati. With a population of nearly one million, metropolitan Cincinnati has been identified as one of the five most liveable cities in the U.S. Cincinnati offers great Items necessary for a completed application: Letter diversity to our faculty and students, including the symphony, art museums, the opera, dance, of interest, resume, transcripts, description of present repertory theater a fine zoo, major league sports teams, thousands of acres of city parks and a wide variety of cultural events. Nationally recognized public and private schools, moderately assignment, and five current letters of recommendation priced housing, first-class restaurants, a major international airport and a completed express- way network are among the many advantages of living in Cincinnati. (within last year). APPUCATIONS AND NOMINATIONS: To apply, send a letter of application (noting control Completed application items must be received at #), vita, official transcripts and three current letters of reference to: Jerald Etienne, Special Edu- cation Search Committee, Division of Teacher Education, 505 Teachers College, Box 210002. the following address by March 13, 1998: Christina University of Cincinnati, Cincinnati, OH 45221-0002. School District, Personnel Services Office, 83 East Main Review of completed applications begins on January 12, 1998. Applications/nominations will Street, Newark, Delaware 19711. be accepted until the position is filled. The University of Cincinnati is an affirmative action/equal opportunity employer.Women, mi- Christina School District is an equal opportunity employer norities, disabled persons, Vietnam-era and disabled veterans are encouraged to apply. UC is a smoke-free environment
1997 TASH CONFERENCE RAFFLE PRIZE WINNERS
Each year TASH Local Conference Committee and staff gather items for a raffle at the annual conference. This is always a big hit, and was a success again last year. Many thanks to the donors and the many attendees that purchased tickets. Prizes were either given on-site, or mailed to winners. Please contact the central office if you have any questions about your prize. Congratulations to the following winners.
$25.00 Gift Certificate to 486 Compaq Computer Vinny Testa's Restaurant (donated by Disable Hotline) Angie Hawkins of Chula Vista, CA Terry Drapach of Belfast, ME
Lesley College Sweatshirt Two Nights Accommodations Sue Gribbins of Louisville, KY at the Seattle Sheraton Hotel and Towers (during the 1998 TASH Conference) Boston University Sweatshirt Sherry Poland of Augusta, ME Bernadette Albert of Portland, ME One US Airways Airline Ticket University of Massachusetts Sweatshirt Jane Massey of Manitoba, Canada Claire Rosenbaum of Cumberland, RI Pick of TASH Merchandise BEST COPY AVAILABLE Martha Underwood of Tucson, Arizona
PAGE 21 5 b. TASH Newsletter, February 1998 CENTERVoIeN HUMAN POLICY
As
The Center on Human Policy, includes resources and materials on Sacramento, CA that focuses on support of through its National Resource care" for people with disabili- parents with developmental disabilities, Center on Community Integra- ties. The focus of this package is on support for people with developmental tion and its subcontracts with the long-term supports for people with disabilities to manage personal assistance University of Minnesota's Research and developmental disabilities. The package services, and support for people in many Training Center on Community Living contains a position statement on other areas of their lives in addition to and Responsive Systems Associates, managed care, articles containing disability. (23 pages) $2.65 distributes a variety of reports and background information, and cautionary resources on the integration of people pieces about the potential dangers in Jay Nolan Community Services: The with significant disabilities into commu- managed care as well as a list of addi- Advantages and Dilemmas of Convert- nity life. The project would like to make tional organizations to contact for ing Quickly from Group Homes to these reports available to you at cost. further information. (105 pages) $5.35 Supported Living Services (1996) by Due to space limitations, this is a partial Kathleen Hulgin describes the strategies listing; a complete list is available upon Innovative Practices in Supported and challenges of changing from group request. Living: An Overview of Organiza- homes to supported living in an agency tions, Issues, and Resource Materials serving people with autism and other INFORMATION (1996) edited by Kathy Hulgin, with developmental disabilities. (22 pages) PACKAGES Bonnie Shoultz, Pam Walker and Steve $2.65 Drake, is a comprehensive resource package on supported living.It includes Job Path: Shifting the Focus Beyond Women with Disabili- examples of agencies around the country Just Work (1996) by Kathleen Hulgin ties: Issues, Resources, that are successfully implementing a and Julia A. Sead describes how an Connections, Revised supported living approach and a organization in New York City began to (1997) by Rannveig Traustadottir and discussion of related issues, such as develop alternative day services for updated by Perri Harris includes an housing and person centered planning. people with severe disabilities. (22 article, "Obstacles to Equality: The It also includes an annotated bibliogra- pages) $2.70 Double Discrimination of Women with phy of written materials and information Disabilities," an extensive annotated about World Wide Web sites that From a Community Residence to a bibliography, and annotated listings of address supported living issues. (66 Home of Their Own (1995) by Pam resources, teaching materials, services, pages) $3.95 Walker describes how the Syracuse support groups, organizations, periodi- Developmental Services Office, in cals, and World Wide Web sites. (156 pages). $8.95 Syracuse, New York, facilitated the SITE VISIT REPORTS process of home ownership for two women previously living in a commu- Materials on Self- nity residence. (15 pages) $2.40 Advocacy (1997) by Not Just a Place to Live: OttRachael Zubal, Bonnie Building Community in "Like an Angel that Came to Help Shoultz, Pam Walker and Michael 42WToronto (1997) by Pam Us": The Origins and Workings of Kennedy is an update of the 1990 Walker and Susan O'Connor describes New Hampshire's Family Support information package and includes an the creation of two housing co-ops by Network (1993) by Bonnie Shoultz is a overview article, a short listing of people with and without disabilities, as description of New Hampshire's innova- information available, and selected well as a support organization, tive family support services. It details reprints. (20 pages) $2.30 NABORS. (23 pages) $2.65 the legislative history of the program as well as its implementation throughout Information Package on Standing With People In the state, and draws lessons for others Managed Care and Support, Not Control: interested in developing family-centered Long-Term Supports for Training Toward Self- programs. (52 pages) $3.70 People with Developmental Disabili- Reliance, Inc., Sacramento, CA (1997) ties (1997) edited by Steve Taylor by Pam Walker describes an agency in continued on page 23 PAGE 22 56TAM.' Newsletter, February 1998 CENTERAlleNHUMAN POLICY
Selected Resources and Reports A Checklist for Evaluating Personal examples of individualized supports in on Community Integration Assistance Services (1993) by Connie New York State. The bulletin also continued from page 22 Lyle O'Brien and John O'Brien provides includes discussion of issues and a way of evaluating the effectiveness of challenges related to policy and practice policies and/or programs providing regarding individualized supports. (22 RESOURCE MATERIALS personal assistance services by looking pages) at dimensions such as availability, Know Your Rights! comprehensiveness and participant Policy Bulletin on Safeguards (1993) Working and the control. (10 pages) $2.00 addresses how safety can be increased Americans with Dis- by strengthening community and abilities Act (ADA) (1997) by Mair improving the assistance people receive. Hall and Perri Harris is a manual NEWSBULLETINS It also discusses the paradox of regula- designed specifically for people with tions. (18 pages) disabilities who want to learn about Feature Issue on Supporting Diversity their employment rights under the ADA. (Summer 1996) edited by Betty Horton, Single copies of all newsbulletins are free A list of relevant resources and law cases Marijo McBride and Bonnie Shoultz if requested with your order.If you are is also available upon request. (26 explores ways in which services are and interested in obtaining additional copies, pages) $4.00 could be supporting people from diverse please contact the Center on Human groups. It also highlights a number of Policy UPDATED!! Community Integration individuals who tell their own stories. Policy and Practice Abstracts (1997) This bulletin was published through the prepared by Julia Searl and updated by Impact series of the Institute on Com- PAPERS AND ARTICLES Perri Harris is the third edition of a munity Integration at the University of compilation of recent journal articles Minnesota in cooperation with the Record of The Com- relevant to community integration for Center on Human Policy. plexities of Community people with developmental disabilities Building (1997) by John and includes topics of education, A* Feature Issue on Institution Closures O'Brien is a record of a gathering to employment, policy, communication and (Winter 1995/96) edited by Mary F. reflect on experiences and hopes about supported living. (46 pages) $3.95 Hayden, K. Charlie Lakin, and Steve community building. (27 pages) $2.60 Taylor contains national information as A Chance to be Made well as a variety of articles on closing tipImplementing Self- Whole: People First institutions written from the perspec- Determination Initia- Members Being Friends tives of self-advocates, professionals, tives: Some Notes on to Tear Down Institution Walls (1997) parents, researchers, and policy makers. Complex Change (1997) by John complied by John O'Brien is a summary This bulletin was published through the O'Brien offers his reflections about of a meeting of People First of Tennessee Impact series of the Institute on Com- complex change, generated after a members and advisors and presents, in munity Integration at the University of review of 10 of 38 proposals submitted their own words, what people have Minnesota in cooperation with the by states to the Robert Wood Johnson learned about reaching out and being Center on Human Policy. Foundation in the summer of 1996. (40 friends to people who still live in pages) $2.95 institutions, and about supporting them Feature Issue on Supported Living as they move out into the community. (Autumn 1995) is a compilation of short itloA Tune Beyond Us, Yet Their hope is that other self-advocacy articles describing supported living, Ourselves: Power groups can learn from their experiences giving numerous examples of agency Sharing Between People on institution closure. (27 pages) $4.65 approaches to supported living, and with Substantial Disabilities and offers the perspectives of people with Their Assistants (1996) by John Serving Children with Special Needs disabilities about supported living. This O'Brien and Connie Lyle O'Brien in Your Child Care Facility (1996) bulletin was published through the concerns creating relationships and edited by Julia Searl is a manual that Impact series of the Institute on Com- supports that offer people the assistance gives information to child care providers munity Integration at the University of they require in ways that increase their on including children with disabilities in Minnesota in cooperation with the effective control of their lives. (14 their facility.It includes the steps of Center on Human Policy. pages) $2.40 setting up a collaborative inclusive program for preschoolers, and has Policy Bulletin on Individualized continued on page 24 numerous resources that may help the Services in New York State (1995) process, such as how to help staff work contains several brief articles describing as a team. (46 pages) $4.95
PAGE 23 TASH Newsletter, February 1998 CENTERAo4DNHUMAN POLICY
Selected Resources and Reports theoretical framework for understanding on Community Integration relationships between people with TO ORDER THESE continued from page 23 mental retardation and typical people. PUBLICATIONS, WRITE TO: (16 pages) $3.05 Disability Studies and Mental Retar- dation (1996) by Steve Taylor applies a EVALUATIONS AND Rachael A. Zubal disability studies perspective to the Center on Human Policy study of people labelled as having ADVOCACY REPORTS Syracuse University mental retardation or cognitive disabili- School of Education Evaluation of the Self-Directed ties and examines mental retardation as 805 South Crouse Avenue a social and cultural phenomenon. The Personal Services Program Operated Syracuse, NY 13244-2280 article includes an extensive annotated Through Enable (1996) by Pam Walker, 1-800-894-0826 bibliography on mental retardation and Steve Taylor, Julia Searl, Bonnie Shoultz, disability studies by Steve Taylor and Kathy Hulgin, Perri Harris, and Mary FAX (315) 443-4338 Perri Harris. Reprinted from Disability Handley is an evaluation report of the email: [email protected] Studies Quarterly, 16(3), 4-13. (10 Self-Directed Personal Services program pages) $2.50 run by Enable, in Syracuse, New York. The program, which includes people For postage and handling, please include 15% or $2.00 whichever 4:11:11[t Inclusionas a Force for with a wide range of disabilities, School Renewal (1995) includes some aspects of consumer is the greater amount basedon by John O'Brien and control. At the same time, systemic the total of your order. All orders Connie Lyle O'Brien discusses schools constraints to control are discussed. (24 must be prepaid unless an pages) $2.70 that include students with substantial institutional purchase order is disabilities, the authors point out how submitted. Please makeyour inclusion heightens awareness of schools Permanency Planning in Michigan: checks payable to Syracuse as communities and talk about how From Philosophy to Reality (1994) by people are learning to build inclusive Bonnie Shoultz, Susan O'Connor, Kathy University Please note that school communities. (25 pages) $2.45 Hulgin, and Paul Newman is a study telephone orders willnot be and policy analysis of Michigan's accepted. Orders with a purchase permanency planning efforts, including 440 TheTransition to order may be accepted by fax. successes and challenges, for children Supported Living: PLEASE NOTE: If ordering Realizing the Moment with developmental disabilities and and Moving On (1995) by John O'Brien mental health needs. The report is overseas, you will be billed for is an evaluation report of Jay Nolan based on interviews with parents, state any additional costs. Community Services, an agency in and local staff members, and administra- California that has transitioned from tors. (67 pages) $4.35 group homes to supported living The preparation of this articlewas services. (43 pages) $3.25 Negotiation: A Tool for Change supported in part by the National Living with the Questions: Notes (1979) by Steven Taylor describes basic Resource Center on Community from a Gathering of People Concerned negotiation strategies and how they can Integration, Centeron Human with Supported Living (1995) reported be used to work for change. The paper Policy, School of Education, outlines specific strategies for effective by John O'Brien and Connie Lyle Syracuse University, through the negotiation, including preparing for and O'Brien summarizes a discussion about U.S. Department of Education, supported living: the hard questions, following up on negotiation sessions. Office of Special Education and the problematic effects of current system (10 pages) $2.25 design, the concerns in day-to-day Rehabilitative Services, National work, and more. (37 pages) $3.00 Principles of Whistleblowing (1979) Institute on Disability and by Douglas Biklen and Milton Baker Rehabilitation Research (NIDRR), On Accepting Relationships Between contains a list of suggestions for through Contract No. People with Mental Retardation and "whistleblowers," staff and others who want to call public attention to rights H133D50037. No endorsement Nondisabled People: Towards an by the U.S. Department of Understanding of Acceptance (1989) violations at service agencies. (5 pages) by Steven J. Taylor and Robert Bogdan is $2.10 Education should be inferred. a reprint of an article (Disability, The Center on Human Policy Handicap & Society, 4(1), 21-26) that subcontracts with TASH forspace outlines the sociology of acceptance, a 0 in this newsletter. PAGE 24 5 8TASH Newsletter, February 1998 BOUNDARIES . BREAKING PUSHING THE 11
trl Call for Presentations c.) zz International TASH Conference s-4 December 2-5, 1998 (Pre-Conference Workshops & Opening Reception on December 2nd) . FORMING COALITIONS . LISTENING TO ONE ANOTHER
TASH is an international advocacy association of people with disabilities, their family members, community members, other advocates, and people who work in the disability field. Our members are fighting for a society in which inclusion of all people in all aspects of society is the norm. We are an organization of members concerned with equity, diversity, social justice, human rights, and inclusion for all. Send the Original and 3 copies of the Application and Abstract (postmarked) by March 31, 1998 to:
Denise Marshall, TASH.29 West Susquehanna Avenue, Suite 210, Baltimore, MD 21204 Questions? Phone: 410-828-8274+ TDD 410-828-1306 Website: http://www.tash.org Sorry faxed or e-mailed copies cannot be accepted 1998 Priority Topics Proposals may be submitted on any topic that relates to the inclusion of people with disabilities. The 1998 Conference Committee has identified particular interest in the sub-topic areas listed below:
Advocacy IDEA '97 Regulations Qualitative & Quanitative Research Building Alliances and Coalitions Impacting Legislation Rehab Act Community Living Inclusive Education Strategies Related Services in Inclusive Education 'WNW *Creative and Performing Arts Independent Living Centers, Self-Advocacy Communication Councils, or Services Self-Determination Curriculum Adaptation Integrated Sports Special Health Care in Inclusive Settings Deaf Culture Internet and Disability Sexuality, Romance, & Dating Dual Sensory Impairment Issues of Death and Dying Spirituality Early Childhood Issues of Peace and Social Change Transition from School to Work Educational Reform Leisure and Recreation Special Health Care Needs Employment and Careers tkTh> Life Transitions & Changes in Students Who Severely Challege Schools,Who Family Issues Supports for Aging Adults Do Not Have Labels of "Severe" Disabilities Functional Assessment for Managed Care Systems Change at the Local Level Behavior Change Management Issues Systems Change at the Policy Level Governmental Affairs MiCASA/Personal Assistance Urban Education Issues Grassroots Organizing Multicultural Issues Higher Education Paraprofessional Issues \SSEt3iTe pAngoOdleGODIll)3AC EU) Zlipgd110 Personnel Preparation bff110090MDLP VIGIITICer0111 :CIChT(1:010 Housing /Home of Your Own CremtuO*0 Off pDon off miaow cox B.ceim TDEA Monitoring and Enforcement Positive Approaches to Behavior iiligKe4Cdc atcaoceg ElDscase Change MeaTzlWO aIR =00-8=407,0, z11M oxr dittiofforot Caothoon * Please note: TASH will not be able to provide staging, lighting, etc. in session rooK) PAGE 25 TASH Newsletter, February 1998 Call foe Peeserd-afions 1998 TASH Covvfeeehcee Sea*le Guidelines for Submission
1) TASH encourages presentations that are made through partnerships. Panels thatare composed of people with varying viewpoints; ie: self-advocates, parents, family members, researchers, graduate students, and/or professionals are strongly recommended.Panels are also encouraged to represent multicultural, under-served, and varying socioeconomic viewpoints. Presentations for consideration in the the Community Living Strand will require participation of self-advocates and/or family members for acceptance. 2) An abstract must be sent along with the completed application, postmarked by March 31, 1998. Ab- stracts should (1) describe the topic or issue addressed, (2) provide an overview of the content, (3) describe the importance and contributions of the session, and (4) describe the session format- i.e. skill-building, program discussion, panel, etc. Priority will be given to interactive, practical, skill-building, creative,or thought-provok- Mg sessions.
3) Proposal content must reflect the values and resolutions of TASH. TASH is dedicatedto disseminating information that reflects both the ideals and the pragmatic realities of pursuing the goals of equity, social justice, diversity, and full community participation for people with disabilities. The proposal title, description, and all content of presentations must use "people first" language, and must relate to supports or issues thatare commu- nity-based.
4) Please limit the abstract to 300-600 words (1- 1 1/2 pages). Do not send any other materials. You may submit the information on the application form or in alternate format, as long as all of the information requested is included. The form is available to download from TASH's web page: www.tash.org. Youmust, however, print and mail the form as per the guidelines.
5) Please complete all sections of the form: coordinator information, session description, andcontact informa- tion for co-presenters. TASH encourages you to include a variety of co-presenters inyour sessions. Please include presenters who are reasonably certain of attending. Copy the co-presenter form ifnecessary.
6) In requesting the session format, please keep in mind that 1 hour and 2 1/4 hour presentationsare reserved for interactive workshops with an audience. Poster sessions are table top "exhibits" that allow personalized opportunity for discussion. These sessions are highly interactive and valuable.
7) We strongly encourage presenters to be TASH members. All presentersare required to pay conference registration fees. National TASH members, self-advocates, parents, and family membersare eligible to register at a reduced rate.
8) Once received, abstracts are forwarded to three reviewers for scoring. Proposalsare rated on the following criteria: 1) relevance to TASH mission, 2) interest to TASH members, 3) exent to which information is state-of- the-art, or cutting-edge, 4) the practicality of content, and 5) the clarity of the proposal. Scoresare then tallied and ranked.
9) A basic package of audiovisual equipment will be available in all sessionrooms at no charge to present- ers this year. This package includes an overhead projector and an 8x8 screen. If you require additional equip- ment (such as a slide projector, flipchart or markers, or TV/VCR), you may rent the equipment for the specified cost. Order forms for audiovisual equipment will be sent with acceptance letters. 10) At times letters of acceptance get lost, or go to an incorrect address. Letters indicating if proposals have been accepted are sent in late June. Do not assume that your proposal has not been accepted ifyou do not receive a letter.Call the office to check on the status of your proposal. Letters are sent to the coordinator to indicate if accepted or not accepted. It is the responsibility of the session coordinator to notifyco-presenters of acceptance. Confirmation Letters are sent to all presenters in October.
11) If accepted, you may not receive the session time frame or formatyou requested. Session assignments are based on the recommendations of reviewers, with final approval by thc conference committee. Your session may be accepted as part of an In-focus Strand or as part of a general listing of sessions. The specific session room will be scheduled closer to the date of the conference.
12) All presenters are required to make the material for their session available in alternate formatupon request.Information on accessible formatting will be provided with letters of acceptance.
The 1998 TASH Call for Presentations is available in alt,ernate formatupon request. PAGE 26 (-) TASH Newsletter, February 1998 Call fop. Pv.e.sevvl-atiorts 0 1998 TAS-FI Cohfei.et4ce Seattle
1998 TASH Conference Presentation Application Date Received: (please be sure the abstract is attached to this form) Session Code:
SESSION COORDINATOR (1 person only): Please list below the address which you would like in the conference program:
ORGANIZATION:
ADDRESS: CITY:
STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MA1L:
The above address is:171 HOME 171 WORK In OTHER
Please send my letter which indicates acceptance status to:
CI Same as Above(skip the next session i f checked) GI Use DifTerentAddress (please list below)
ORGANIZATION:
ADDRESS: CITY:
STATE/PROV1NCE: COUNTRY: Z1P/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL:
The above address is:CI HOME CI WORK CI OTHER Session Information
SESSION TITLE (please do not exceed 10 words):
Please type a description ofyour presentation in 40 words or less. This description will be reprinted in the final Conference Program if accepted. TASH reserves the right to edit descriptions. Please include information on content and format of session.
Requested Session Type: Applicable Interest Area HIGHER EDUCATION LEISURE AND RECREATION (Please check only one) (This category determines which committee MANAGEMENT ISSUES reviews your proposal Please pick only one) MULTICULTURALINTERNATONAL PARAPROFESSIONAL El 1 HOUR SESSION 0ADVOCACY PERSONNEL PREPARATION 2 HOUR & 15 MINUTE SESSION 0AGING POSITIVE APPROACHES POSTER SESSION 0 CREATIVE/PERFORMING ARTS RELATED SERVICES TASH TECH 0COMMUNICATION RESEARCH (Pre-Conference Workshops) 0COMMUNITY LIVING/HOUSING SELF-DETERMINATION SPECIAL SESSION (please explain): 0INCWSIVE EDUCATION SPECIAL HEALTI-1 CARE NEEDS 0 INDEPENDENT LIVING SPIRITUALITY 0 EARLY CHILDHOOD SEXUALITY/ SEXUAL EXPRESSION 0EMPLOYMENT AND CAREERS STUDENTS WHO SEVERELY CHALLENGE 0 ETHICS/RIGHTS SCHOOLS Yb 0FAMILY 0 TRANSITION 0GOVERNMENTAL AFFAIRS 6 0 URBAN ISSUES Can foe Peesevl-hatiotls qj 1998 TASHI Cofc q Sec& Fie Co-Presenter Information
NAME:
ORGANIZATION:
ADDRESS: CITY:
STATE/PROVlNCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL: The above address is:0 HOME 0 WORK 0OTHER
NAME:
ORGANIZATION:
ADDRESS: CITY:
STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL: The above address is: 0 HOME 0 WORK 0OTHER
NAME:
ORGANIZATION:
ADDRESS: CITY:
STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL: The above address is: 0 HOME 0 WORK 0OTHER 0
NAME:
ORGANIZATION:
ADDRESS: CITY:
STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL:
The above address is:0 HOME 0 WORK CIOTHER
Thank you ©I f©W Merest h.1) presenthg at the 1998 UnternaUona0TASH Coniference
Copy this page for additional presenters. Pass a copy of the entire application to a friend or colleague! PAGE 28 6 2 TASH Newsletter, February 1998 CONFERENCES/POSITIONS OPEN
School of Education, The University of Washington Graduate Program Syracuse University trains teachers to serve the needs of pupils with significant Education in Italy: disabilities. Emphasis on data- An Inclusive Approach May 12 - June 7, 1998 based, systematic instruction referenced to the requirements Why study inclusive education in Italy?United of natural school and commu- Nations observers cite Italy's programs as the most inclusive in the world. School site visits, art and nity settings. M.Ed. degree plus cultural experiences, guest lecturers. initial teacher certification pos- Field visits to schools in Rome, Florence, Parma, sible. Dr. Felix I3illingsley, Area and Casanova di Carinola (a rural village near of Special Education, 102 Miller Naples). Hall, Box 353600, University of For more program information write or call Dr. Carol Washington, Seattle, WA Berrigan (Seminar Director), Syracuse University, Center on human Policy, 805 S. Crouse Avenue, 98195, (206) 543-1827, e-mail Syracuse, New York 13244-2280; (315) 443-4486. [email protected]
Doctoral Program in Special Education Department of Special Education University of Illinois at Urbana-Champaign
The University of Illinois at Urbana-Champaign, Department of Special Education offers challenging opportunities for preparation at the doctoral level. The program is designed individually for all students to reflect their unique interests and experiences. Participants may choose to specialize in infancy and early childhood, mild disabilities, moderate and significant disabilities, or transition, among other areas. The College of Education and Department of Special Education consistently rank among the top five to ten in the nation. Applications for graduate studies are now being accepted for the '98-'99 academic year. For more infor- mation regarding individualized doctoral studies, financial aid, or other program opportunities, contact:
The Department of Special Education 288 Education 1310 South Sixth Street Champaign, Illinois 61820 Phone: (217) 333-0260 http://www.ed.uiuc.edu/COE/SPED/
PAGE 29 3 3 TAM Newsletter, February 1998 FACILITATED COMMUNICATION CONFERENCE
z4vkixaVtatedCommun Syracuseuticati. at ntpc Ptp "\-0 announces the the Sixth Conferenceon Facilitated Communication "No Time For Silence" May 4-5, 1998 Preconference Day: May 3 Syracuse, New York
The theme of the conference arises from the position of Facilitated Communication, whichis at the crossroad between silence and voice, between inaction and possibility. The conference will focuson the latest research, practice and current issues in Facilitated Communication. FEATURED SPEAKERS INCLUDE: Donna Williams, author of "Nobody Nowhere" and Donna Rosemary Crossley, Director, DEAL "Somebody Somewhere" will present on (Monday, May Rosemary (Dignity, Education, Advocacy and Williams Crossley 4). Exposure Anxiety: The Problem Of Daring To Be. Language) Communication Center in Australia, and author of "Facilitated Eugene Eugene Marcus, Associate, Facilitated Communica- Communication Training" and "Speech- Marcus tion Institute will present "On Almost Becoming a less" will speak on "Breaking the Silence" Person" (Tuesday, May 5) an examination of the reactions of profes- sional establishments to the introduction Lou Brown, Professor, University of Wisconsin at of new communication techniques, Madison will present on "Integrating Students with including sign language, augmentative Significant Disabilities in Schools and Communities" communication and facilitated communi- (Tuesday, May 5) cation. (Monday, May 4)
REGISTRATION INFORMATION: You can register by phone (315) 443-4696;or complete the registration form below and return it to: Facilitated Communication Institute, 370 Huntington Hall, Syracuse, NY 13244. Completed registration formscan also be faxed to (315) 443-5845 ACCOMMODATIONS: For hotel accommodations, contact the Sheraton Inn University directlyat (315) 375-3000. FEES: Please check all boxes that apply. If you are registering forone day only, please write the day you will attend. ADDITIONAL CONFERENCE INFORMATION available on our webpage: http://soeweb.syredu/thefci
Conference registration includes Monday night dinner Name of Registrant Agency/Company flFull Registration $175.00 Mailing Address 1=1 One Day Registration $100.00 City 1=1 Sunday Pre-Conference $ 35.00 State/Zip or Postal Code Total Enclosed $ Country (if outside of the U.S.) (Payment must be enclosed with registration) Phone Fax E-mail SCHOLARSHIPS AVAILABLE 0Please specify needs for interpreter services, accessiblity supportsor Please send written request (including dietary requirements statement of need) to Marilyn Chadwick via surface mail or to [email protected].
PAGE 30 6 TASH Newsletter, February 1998 CONFERENCES
Rich Villa and Norman Kunc 1998 present Inclusion
THE INCLUSION PUZZLE: Works! Fitting the Pieces Together Conference A two-day workshop on The Philosophy, Instructional Strategies, and Organizational Accepting Practices of Inclusive Education the When: March 24 & 25, 1998 (in conjunction with the annual CAL-TASH Conference) Challenge... Where: Doubletree Hotel, Sacramento, California Building For more information, contact Partnerships MARK DOYLE at Everyone Is Welcome: 630-584-0970 March 1-3, 1998 Renaissance Austin Hotel Austin, Texas
Beit Issie Shapiro's2nd More than 100 workshops will include topics ofinter- International Conference est to parents, educators, on Development Disabilities paraeducators, and adminis- in the Community trators. Call or e-mailus for a complete list of workshops and registration information. Interdisciplinary Perspectives: Policy, Practice and Research Fees: $130 (professionals); $15 (parents); June 29-July 2, 1998 principals ona team of five Holiday Inn Crowne Plaza Hotel, Jerusalem, Israel or more get in FREE! For further information, please contact: For further information: Conference Secretariat Call 800-252-9729; CARMEL Organizers of Conferences & Events PO. Box 1912, Ramat Gan 52532, Israel E-mail: [email protected] Telephone: +972-3-5754040; Fax: +972-3-5753107 e-mail: [email protected] Visit our web site: www thearcoftexas.org
PAGE 31 6 b TASH Newsletter, February 1998 TASKQM3MIU'Ur
Priscilla Newton, Editor Policy Statement Executive Board It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell Donna Gilles by the TASH policy on the use of people-first language Loh Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used, The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
M M113QDgDfl- COOMAT Referred by: Name: Address: City/State/Zip:
Telephone: ( ) Fax: ( ) E-mail: General Membership (individual) $85. Please Check Appropriate Categories Agency/business/university/ (not more than three): college/library/school $190. ) Administrator/Adult Services (allows 3 conference attendees at ) Administrator/Eduction the member rate) ) Administrator/Other Self Advocate, Parent, Full Time Student, ) Adult Service Provider/Staff Direct Careworker/Paraprofessional/ ) Behavior Specialist Personal Attendant (for whom payment of ) Case Manager full fee would present a hardship) $45. ) Early Childhood Services Family (group rate) $130. Lifetime Member $1000. ) Educator/Teacher All dues are $15 higher for members outside the ) Gov. Personnel (Federal, State, Local) U.S. & Canada. Funds must be submitted in ) Higher Education U.S. Dollars. ) Interested Individual/ If you would like to charge your membership, Advocate/Friend please fill in the necessary information: () Mastercard ( ) Legal Services Provider ) Visa () Discover ) Occupational/Physical Therapist Card Number ) Parent/Family Member Expiration Date ) Personal Assistant Signature ) Professional Public Policy Advocate () I would like to arrange to spread my ) Psychologist payments out. ) Regular Education Teacher/ Enclose 1/3 and you will receive 2 additional Administrator invoices at monthly intervals. ) Related Services Provider How did you learn of TASH: ) Self-Advocate What, in particular, inspired you to join: ) Social Worker ) Speech/Language Pathologist What other disability organization do you belong ) Special Education Teacher/Support to: Specialist If you are applying for a student membership, ) Staff Development/TraMer please provide the following information: ) Student (College/University) Department ) Supported Employment/ College/University Day Personnel Student I.D. Number ) Other Anticipated year of completion () Add $15 if you would like to become a mem- ber of your local TASH Chapter. MOVING? Please make check payable to: TASH Please notify TASH Address: 29 W. Susquehanna Avenue, Suite 210 Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 6164 ,
VOLUME 24 ISSUE NUMBER 3 MARCH 1998 MARCH 1998
TABLE OF CONTENTS TASH Considersa MICASA MARCHES FORWARD PAGE 4 Name Change INSTITUTION CLOSURES CONTINUE AT AN AVERAGE OF MORE THAN 12 PER YEAR PAGE 8 up the acronym because it is so widely FIGHTING TO KEEP 'Em IN PAGE 10 recognized, because to change it might lead to confusion and loss of members, 1997 TASH ANNUAL CONFERENCE: INCLUSION ROUNDTABLE PAGE 15 and because a name change could mean considerable expense in reprinting all of THE DEINSTITUTIONALIZATION OF AMERICA PAGE 18 our letterhead, various envelope styles, FROM THE EXECUTIVE DIRECTOR labels, business cards, etc. QUALITY IN SMALL ICFs/MR BY NANCY WEISS In 1995, the Board voted to drop the VS. WAIVER HOMES PAGE 23 full name (The Association for Persons POWER SHARING BETWEEN PEOPLE with Severe Handicaps) and go by the WITH SUBSTANTIAL DISABILITIES For anumber of years there has been AND THEIR ASSISTANTS PAGE 25 discussion about changing TASH's name. acronym alone. None of our letterhead, business cards etc. now carries the full 1998 ANNUAL TASH CONFERENCE... PAGE 28 Staff and Board members regularly receive negative comments about TASH's name of the organization. They read POSITIONS OPEN PAGE 31 name. A common theme of these "TASH" and a tag-line. The tag-line comments is: "Why does one of the most currently being used is: "Disability progressive disability organizations in the Advocacy Worldwide." TASH (formerly The Association for Per- world have one of the most regressive The fact is, using the acronym alone, sons with Severe Handicaps) is an inter- names?" It seems that no one likes the just doesn't work. JASH continues to be national advocacy association of people name, but we have been reluctant to give with disabilities, their family members, continued on page 3 other advocates and people who work in the disabilily field. TASH actively pro- f I motes the full inclusion and participation of persons with disabilities in all aspects /" of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- 1I= Il /' enue, Ste. 210, Baltimore, MD 21204 WHOM DO I CONTACT?? A=1: or phone (410) 828-8274, ext. 105 or For issues of policy, chapter or committee support, or general e-mail: [email protected]. concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on the conference, regional workshops, or technical MISSION STATEMENT assistance, call: Denise Marshall, Director of Training and Technical Assis- tance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] fTASH For questions about membership, conference registration or exhibiting Stretching the boundaries of what is possible call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] Building communities in which no one is segregated and everyone belongs; For information on government affairs or fundraisinWdevelopment, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. Forging new alliances that embrace diversity; 104, e-mail:[email protected]
Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, newsletter submissions or advertising, or publication sales, call: Priscilla Eradicating injustices and inequities; Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, e-mail:[email protected] Supporting research and disseminating knowledge and information; For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, at (415) 338-6230, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 TASH Newsletter, March 1998 FROM THE EXECUTIVE DIRECTOR
FROM THE EXECUTIVE DIRECTOR Board is now in the process of votingon continued from page 2 the proposal. If approved by the Board, the name change proposal would then be 1.Do you think we should pursuea called The Journal of the Association for brought to the membership fora vote of name change? Persons with Severe Handicaps. Several the members. The proposal fora name times a week, I explain the history of change is as follows: name changes in answer to the question, "What does TASH stand for?" We have 1.That we officially change the name of received so many annoyed phone calls the organization to: saying, "I've searched all over this brochure and can't find what TASH "The Association for Sodas stands for," that we've started putting the Justice and Human Rights" following information on brochures: 2.That we continue to use the acro- nym, "TASH" and the by-line, 2.Do you like the suggested name or What Does TASH "Disability Advocacy Worldwide"on have other suggestions? Stand For?? our printed materials. We can add "The Association for Social Justice Many people .want to know what the and Human Rights" to printed acronym TASH stands for Here's a materials as we have them reprinted brief history of the organization's but we could continue to usepaper names. When .TASH was started in goods we have on hand. 1974, it was called the American 3.That we continue to publish the Association for the Education of the explanation above, "What does Severely/Profaundly Handicapped TASH Stand For," including infor- 3.Do you like the current tag line, and went by the acronym: AAESPH. mation on the newest name change "Disability Advocacy Worldwide" or In 1980 the name was changedto so people can understand the various would you suggest a different one? The Association for the Severely changes the organization and its name have gone through. Handicapped,_ reflecting TASH's broader mission. Thename was 4.That JASH officially change itsname changed to The Association for to "The Journal of The Association for Persons with Severe Handicaps in Social Justice and Human Rights." 1983 but the acronym, TASH, Although this name change won't continued to be used. In 1995, the solve all of our name-related problems,at Board voted to maintain theacronym least it will put the worst of the implica- because it was so widely recognized tions of our current name behind us. 4.Additional comments/concerns: but to stop using the fullname of the Some people have pointed out that the organization as it didn't reflect new name doesn't exactly spell TASH, current values and directions. What but nor does The Association for Persons with Severe Handicaps! Another does TASH stand for? Probably the shortcoming is that the name doesn't best answer is: equity, diversity,social clarify our commitment to disability justice and inclusion! issues. We would continue to needa tag line to make it clear thatwe are first and foremost, a disability advocacy organiza- So even though we have officially tion. dropped the offensive terms inherent in I welcome your comments! Youcan the name, "The Association for Persons contact me by phone (410-828-8274, Name and contact information with Severe Handicaps," they liveon -- ext. 101), or e-mail ([email protected]), or (Optional) and clearly, are not in keeping with the mail or fax (410-828-6706)a copy of this values of our organization. page with your responses to the questions The Executive Committee of the to the right. THANKS! Board recently approveda proposal to officially change TASH'sname. The full
PAGE 3 6 9 TASill Ielmaschwttair_ Memel.Odba MiCASA
n June 24, 1997, HR 2020, the Medicaid Community jeopardy of institutionalization, there would Attendant Services Act N be a solution in the community. If your child N (MiCASA) was introduced by was in a facility and wished to live in the Q If House Speaker Newt Gingrich. community, he or she could. enacted, this bill would give people the SUPPORT Passage of MiCASA also means that if option to choose to live in the community you *are an individual with a disability, you and have Medicaid dollars provide for have a choice. MiCASA would create a their support needs in the living arrange- MUSA choice where one currently does not exist. ment of their choice. MiCASA would not replace any programs, TASH has joined with a host of NOW! and would not force anyone to choose a other national advocacy organizations to community alternative, but it would mean endorse passage of this bill. At TASH's that finally anyone who wants to live Annual Conference in December, passage in the community can make that choice." of MiCASA was identified as a top priority for TASH's work in 1998. MiCASA IS BASED ON There is a similar bill in the Senate, Longterm Care Reform and Deficit TWELVE PRINCIPLES Reduction Act, S 879, introduced by I Senator Feingold. Despite some confu- 1. Maximum control of the indi- sion about the companionabilityof the vidual to select, manage, and two bills, TASH supportsboth bills, but control his/her attendant has chosen to put its focus on the more a services. sweeping legislation contained in HR 2.Community-based, not institu- 2020 MiCASA. tional-based support The House Commerce Committee is 3 Eligibility is based on functional currently analyzing HR 2020, and will need, regardless of age and/or hold hearings on Capitol Hill on March disability, 12, 1998. 4.Services will be available in- Mike Auberger, National ADAPT I home and other locations. Leader, TASH Board Treasurer and Chair ii 5.Services will be available 24 of the TASH Governmental Affairs hours a day, 7 days a week. Operating Committee, offers the follow- 6.Back-up and emergency services of passage ing analysis of the importance must be available. of MiCASA: 7. The program must allow for co. "This national legislation would require pay or cost sharing for people all 50 states to provide personal assistance with higher incomes. services in the community for eligible 8 Delivery of service must include individuals when those individuals prefer to options for vouchers, direct cash live in the community. Those eligible individuals will fall into two categories. The payment, individual provider first is individuals living in nursing homes, model, as well as individual- intermediate care facilities or mental health directed agency model. facilities. These folks would be able to leave 9.Health-related tasks can be those institutional settings and move intothe assigned, delegated to, or be community funded by the dollars that done by unlicensed personal were spent on them inthe institution attendants. essentially redirecting institution dollars into 10. Volunteer training should be the community. The second category would available for people with disabili- be individuals who would be in jeopardyof ties or eligible individuals. institutionalization in a nursing home, 11. Personal attendants must receive intermediate care facility, or mentalliealth a livable wage and benefits. facility. This would mean that eligible 12Attendant services should be individuals would be able to stay in the based on an agreed upon community and not be forced into institutions. individualized service plan. What does this mean for parents? It means if your child oradult child was in continued on page5 70 PAGE 4 TASK Newsletter, March 1998 M1CASA
MiCASA Marches Forward poverty level. In addition, states can 5. What are the transitional continued from page 4 choose to implement a sliding fee scale services? for people of higher incomes, and Currently Medicaid does not pay for We've attempted to provide answers to MiCASA specifically references this asan some of the most frequently asked questions some needed services for people coming incentive for employment. This sliding out of nursing homes and intermediate about eligibility and coverage criteria under fee scale can go beyond thecurrent MiCASA and how the program operates. care facilities. These include rent and Medicaid eligibility guidelines. utility deposits, bedding, kitchen supplies and other things necessary to make the 1 . How are "attendant 3. Is MiCASA biased towards services" defined in MiCASA? transition into the community. These an agency delivery model? costs would be covered by MiCASA. In HR 2020, also known as MiCASA, No. MiCASA assumes that "one size "qualified community-based attendant does not fit all." It allows the maximum 6. What is the purpose of the services" are to be defined by the Secre- amount of connul preferred by the transition plan? tary of Health and Human Services. In individual with the disability It allows for the June 1, 1995 draft CASA bill, MiCASA also sets aside $2 billion vouchers, direct cash payments oruse of a over 6 years to help the states transition attendant services was defined as: fiscal agent in obtaining services, in from their current service model "any action to assist a person with a to more addition to services delivered by anagency community-based services. The bill mental and/or physical disability inaccom- In all these delivery models the brings together the major stakeholders in plishing activities of daily living OWL), individual has the ability to select, the fight for community-based attendant instrumental activities of daily living (IADL) manage and control his/her attendant services. The DD Councils, Independent and health-related tasks. These include, but services. The key concepts are choice Living Councils, and Councils on Aging are not limited to: personal care seririces, and control regardless of who the would develop a plan that would household services, cognitive services, employer of record is. transition the current system into one mobility services and health-related tasks." that focuses on community-based Attendant services as defined in 4. Well MiCASA replace existing attendant services. Closing institutions, MiCASA are part of a larger system of community-based programs? or at least the closing of bed spaces, must personal assistance services. MiCASA MiCASA creates a new service that be thought through by the people that specifically states that services should be people who are eligible for nursing have an investment in the final outcome delivered, "in the most integrated setting homes and intermediate care facilitiescan the consumers. The plan envisions appropriate to the needs of the individual." choose. The money follows the indi- ending the fragmentation that currently 2. Do you have to be vidual rather than staying with the exists in our long-term care system. facility. MiCASA does not effect existing Please send an individual letter to each impoverished to be eligible for programs or waivers. Waivers usually MiCASA? House member listed below and ask him/ include a much more intense package of her to support passage of HR2020-MiCASA. No. If you are eligible to go intoa services for those individuals who need To send letters, you can obtain e-mail, nursing home or an 1CF-MR facility,you that package. MiCASA establishes fax and post office addresses for individual would be eligible for MiCASA. Financial attendant services as a unique service that Committee members at the Commerce Corn- eligibility for MiCASA can go up to the can compliment other services. minee web page: httpilwwwhouse.gov/com- current Medicaid eligibility for nursing homes, which is 300% of the Federal or you can call the Committee at (202) 225-2927. How canyou help support passage of MiCASA? Following is a list of the members of the House Commerce Committee, the Congressional body currently analyzingHR 2020 (MiCASA): Republicans: James C. Greenwood, PA Barbara Cubin, WY Sherrod Brown, OH Eliot L. Engel, NY Tom Bliley, VA, Chairman Michael D. Crapo, ID James Rogan, CA Ban Gordon, TN Thomas C. Sawyer, OH WJ. "Billy" Tauzin, LA Christopher Cox, CA John Shimkus, IL Elizabeth Furse, OR Alben R. Wynn, MD Michael G. Oxley, OH Nathan Deal, GA Peter Deutsch, FL Gene Green, TX Michael Bilirakis, FL Steve Largent, OK Democrats: Bobby L Rush, IL Dan Schaefer, CO Karen McCanhy, MO Richard Burr, NC John D. Dingell, MI Anna G. Eshoo, CA Ted Strickland, OH Joe Barton, TX Brian P. Bilbray, CA Henry A. Waxman, CA Ron Klink, PA Diana DeGette, CO J. Dennis Hasten, IL Ed Whitfield, KY Edward J. Markey, MA Ban Stupak, MI Fred Upton, MI Greg Ganske, IA Ralph M. Hall, TX Cliff Stearns, FL Charlie Norwood, GA Rick Boucher, VA Bill Paxton, NY The Committee's e-mail address Rick White, WA Thomas J. Manton, NY is [email protected] or you Paul E. Gillmor, OH Tom Cobum, OK Edolphus Towns, NY Scott L. Klug, WI Rick Lazio, NY Frank Pallone, Jr., NJ can send a fax to 202-225-1919 7 1 PAGE 5 BEST COPY AVADARI F TASH Newsletter, March 1998 MARCH 1998
sollETita NCLUSIONTIME fOR CHILDREN AND ORE TIIN. YOUTH WITH DISABILITIES S Inclusion Times for Children andYouth withDisabilities No single issue in schoolreform has createdmore controversy or continuing debate than theinclusion of children and youthwith disabilities in regular education.To assist professionalsand parents in obtaining critical information, National ProfessionalResources, Inc. provides you with the latest information! Published5 times per year, Inclusion Times provides thelatest informationon: best practices and modelprograms Federal and state initiativesand policies articles on parent andteacher perspectives conferences/activities information on how to obtainbooks, videos, and other resources related to inclusion, andmuch more! This newsletter is requiredreading for all individualsinterested in a "balanced" presentationon the issues surrounding this controversial movement.
Newsletter, 12 pages, Order#IN-TAS One Year (5 issues) $39.95 Two Years (10 issues) $69.95
To celebrate its fourth year of publication,we are providing you withan opportunity to subscribe for 2 years for $69.95 and receiveabsolutely FREE the 43 Who Are the Children minute video, Being Born Today:Impact on the Future. Thisvideo has been used in teacher trainingand staff developmentthroughout the country. "Dr. Buehler presentsa 15 week course in 43 minutes...Excellent!" Seymour Samuels, Ed.D. DIRECTOR EMERITUS, SPECIAL EDUCATIONIN LEADERSHIP TRAINING ACADEMY
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PAGE 6 72' TANI Newsletter, March 1998 MARCH 1998
A PRACTICAL GUIDE trip go toamuseum TO RESPITE FOR YOUR FAMILY /yolk P,,,0".7..,"kilic, By Molly Dellinger-Wray and Monica Uhl goleilsolo A comprehensive guide designed for use by families, as well as te001i A PRACTICALSkop picture GUIDE TO professionals working with families who have respite needs (64 pages) RESPITE play r-71 FOR YOUR Contents: FAMILY elierthsc: key sweigssos Thinking About Respite Options ' write inyour journa. Finding Respite in Your Community PUZZLE tO, Checking Out Respite Programs cone ri If01 Learning About Your Respite Provider RENT A MOVIE Hiring Your Own Respite Provider '"fr "it'see aNova Evaluating Your Respite Experience Guide includes an array of forms that families can use to record $25.00 plus shipping & handling pertinent information. Respite Resource Project To Order Call: Virginia Institute for Developmental Disabilities Virginia Cotmnonwealth University 804/828-8587 P.O. Box 843020Richmond,VA 23284-3020
f.TASH Member DirectoryfAS We are currently working on publishing a TASH Member Directory, targeted for release in January 1999. The directory will list members by last name, by state and chapter affiliation, and by Interest and Action Group. In addition, because we often get requests to refer speakers and consultants on specified topic areas, we will also include a section listing TASH members available for consulting and speaking. If you would like to be listed in this guide in a consult- ant/trainer capacity, please send the following information:
Name Address (list the preferred directory address) This is my 0 Home 0 Business 0 Other Phone Number Fax Number E-mail address Web page
Please list up to three topic areas that you would like to be referenced under: 1. 2. 3.
Please list in what capacity you are available (ie: consultant, speaker, reviewer)
Send to Denise Marshall, TASH, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or e-mail the information to [email protected] Remember - only current TASH members will be listed in this valuable resource. If you know of speakers or consult- ants who are excellent resources, encourage them to become members now! I.
c.,e TANI Newsletter, March 1998 PAGE 7 7o INSTITUTION CLOSURES
Institution Closures Continue atan Average of More than 12perYear
BY K. CHARLIE LAKIN, LYNDA ANDERSON, ROBERT PROUTY AND JENNIFER SANDLIN UNIVERSITY OF MINNESOTA
It has been 19 years since the operated since 1960 and their present averaging 1.25 per year. There were 5 Center on Human Policy at and projected operational status. As by large state institution closures in the Syracuse University issued "The convention, the definition of "institution" period Fiscal Years 1976-1979 (an annual Community Imperative: A Refuta- used is that 16 or more people live in it. average of 1.25 per year). There were 14 tion of All Arguments in Support of large state institution closures in the Institutionalizing Anybody Because of Total Large State MR/DD period Fiscal Years 1980-1983 (annual Mental Retardation." The Imperative was Institution Closures average of 3.5 per year) and 11 in the revolutionary in its demands and period Fiscal Years 1984-1987 (annual threatening in its implications. How Figure 1 shows the number of large average of 3.0). In the period Fiscal Years could people believe it reasonable that all state institutions and special develop- 1988-1991, closures increased rapidly to 141,500 people in state institutions, over mental disabilities units in state institu- 34 (an average of 8.5 per year). In the three quarters of whom were reported to tions primarily serving other populations Fiscal Years 1992-1997, closures aver- have severe or profound mental retarda- that have closed since 1960. It also aged 12.4 per year to a total of 62. tion should live in the community? includes projected closures for the At the end of 1997 states had Today, the Community Imperative reflects period 1998 to 2000 that were formally planned the closure of a total of an a mainstream, although far from univer- planned at the end of 1997. As shown additional 18 state institutions and sal, professional point of view. It has between 1960 and 1971 only two state developmental disabilities units for Fiscal become a passionate cause of self- institutions were closed in the United Years 1998-2000 (or an average of 6 per advocates. It is official policy of a States, an average of 0.17 closure per year). As in the past, the number of growing number of states. At the time year. In Fiscal Years 1972-1975, institu- closures that will actually occur between the Community Imperative was drafted tional closures inched slightly upward, continued on page 9 there were over 140,000 residents in state developmental disabilities institutions. Today, state institutions house less than FIGURE 1 40% of the total number of residents Average Annual Number of Large State Institutions and MR/DD there were in 1979. All across the U.S., Units Closed and Planned for Closure, 1960 -2000 in steadily growing numbers, state institutions have been closed. Each of 14 12A the closures represents another step 12 toward the fundamental proposition of .,. 10 the Community Imperative that, "All 8 5 people, regardless of the severity of their 8 disability, are entitled to community , 6 , living." This brief report counts steps , , taken and left to be taken toward 4 fl R fulfillment of the Community Imperative. ,-,4 ..- . The statistics were provided from 2 1.26 1.26 ""," ".. ,, ,,,...... _..... r each of the states on large state develop- ..,:...... -13-1-771M-1 ' x''4"--- 1960-71 1972-75 1976-79 1980-83 1984-87 1988-91 1992-97 1998-2000 mental disabilities institutions and special 'Planned Closures units in psychiatric facilities that have 7 4 PAGE 8 TASHNewsletter,March 1998 INSTITUTION CLOSURES TABLE 1 Summary of Large State-Operated MR/DD Institution Closures Continue at an Average of Residential Institutions and Units since 1960, More than 12 per Year including Closures and Planned Closures continued from page 8 Large State- Operated MR/DD Three quarters of the states (38) Institutions and Units have either closed a large state MR/ Operating Planned DD facility or are planning to do so between 1960 Total Closed Closures 1998- State and 1997 1960-1997 2000 by the end of 2000. AL 5 1 0 1..... AK 1 0 AZ 4 3 0 1998 and 2000 is likely to significantly surpass the number AR 6 0 0 5 0 projected at the beginning of that 3 year period. CA 11 CO 3 1 0 Six states (Alaska, District of Columbia, New Hampshire, CT 15 7 0 New Mexico, Rhode Island, and Vermont) no longer have large DE 1 0 0 DC 3 3 0 state-operated institutions. Two states (Hawaii and West Virginia) FL 10 2 0 plan to close the last of their state institutions by the end of GA 8 2 0 1998. Other states continue to close institutions and move HI 2 1 1 ID 1 0 0 closer to ending state institution services. Maine operates a IL 17 6 1 single state institution with only 17 current residents (barely an IN 11 3 2 "institution" by the conventional standard of 16 or more IA 2 0 0 KS 4 1 1 residents). Michigan has closed 11 of its original 13 large state KY 5 2 0 facilities. Minnesota is projected to have closed all but one unit LA 9 0 0 of its original 9 state institutions by the end of the century. New ME 3 2 0 MD 9 5 0 York which had already closed nearly half of its large state MA 11 4 1 facilities by 1995, has planned to close two more of its remaining MI 13 11 0 MN 9 5 3 11 traditional state institutions by the year 2000. Pennsylvania MS 5 0 0 having already closed 13 of 23 large state residential facilities, MO 16 10 0 plans to close at least 3 more by 2000. MT 2 0 0 NE 1 0 0
NV 2 0 0 Closures and Projected Closures by States NH 2 2 0 NJ 11 3 1 NM 3 3 0 Table 1 presents a state-by-state breakdown of the total NY 27* 13 2 number of large state facilities and units operated since 1960, NC 6 1 0 the number closed between 1960 and 1997, and the number ND 2 1 0 OH 23 11 0 planned for closure by the year 2000. As shown, three quarters OK 4 1 0 of the states (38) have either closed a large state MR/DD facility OR 3 1 0 or are planning to do so by the end of 2000. In the 38 year PA 23 13 3 RI 3 3 0 period from the beginning of 1960 through the end of 1997, 36 SC 5 0 0 states closed one or more facilities. It is projected that by the end SD 2 1 0 5 0 1 of the century, 45% of all state institutions that have operated TN TX 15 2 0 since 1960 will have been closed. UT 1 0 ()
V'T 1 1 0 VA 8 3 0 Source: Sandlin, J., Prouty, R., Lakin K.C., & WA 6 1 0 Anderson, L. (1998). Large state MR/DD residential WV 4 3 1 facility closures, 1960-2000.In R. Prouty & K.C. WI 3 0 0 Lakin (Eds.). Residential services for persons with WY 1 0 0 developmental disabilities: Status and trends U.S. Total 347 137 18 through 1997.Minneapolis: University of * includes only the Developmental Centers operated by New York State Minnesota, Research and Training Center of Office of Mental Retardation and Developmental Disabilities. Community Living/Institute on Community ** Closed last instituion in early 1998. Integration (UAP). BEST COPYAVALai PAGE 9 TASH Newsletter, March 1998 Er; DE-INSTITUTIONALIZATION
California foes of community living fight de-institutionalization FIGHTING TO KEEP 'EM IN
BY JOSIE BYZEK
TheIf Hill are
Selah, Washington: "Unattended Woman Dies of Brain Injury" Chicago, Illinois: "Retarded Woman Alone In Apartment Dies of Seizures" Omaha, Nebraska: "Retarded Man Dies After Moving to Community Care"
Fourteen pages of news clips docu enu
mishaps at group homes around thnati
These form the centerpiece of a report put out by the California has had the fastest deinstitutionalization of any California Association of State Hospital Parent state so far2,300 people since 1994. This exodus was the Councils for the Retarded (CASH/PCR). This report, result of what is called the "Coffelt Lawsuit," brought by and a study by University of California statistician parents of people living in the Developmental Centers, who David Strauss, are the big cannons in the war to stop the charged that over 2,000 people in these centers wanted exodus of Californians labeled with severe mental retardation community services instead. When the parents won the suit, from institutions to the community. the exodus began. Besides CASHIPCR, and the usual unions representing The Strauss report was published in July 1996. Dr. David institution workers such as the California Association of Strauss, a statistician for the University of California, Riverside, Psychiatric Technicians, the institutions have the backing of the found that people with developmental disabilities had a 72 California Medical Association, the California Arc, the San percent higher chance of dying in the community than in an Francisco Chronicle - which ran an anti-community series of institution. The report was funded primarily by the federal articles last winter and Senator Diane Feinstein, usually noted government; some money came from what Strauss calls "allied as a liberal supporter of civil rights. groups" - the California Association of Psychiatric Technicians They want a two-year moratorium on all moves out of the is named as the primary union underwriter. institutions, called Developmental Centers. Feinstein "was Fear of people with mental retardation living on the against the transfer of people with developmental disabilities streets, coupled with the Strauss report, has stirred up worries out of care. They were being kicked out into the streets. She of a repeat botched deinstitutionalization process like theone expressed her outrage," said a staffer for Senator Feinstein in California experienced under Gov. Ronald Reagan when her Washington, DC office. Even though no one has been able thousands of psychiatric survivors were freed from institutions to cite a single example of someone actually being "kicked out" without adequate funding or community supports and many of California Developmental Centers "onto the streets," Sen. became homeless. Feinstein's reaction is typical. continued on page 11 76 PAGE 10 TAM Newsletter, March 1998 DE-INSTITUTIONALIZATION
FIGHTING TO KEEP 'EM IN an institution," says Conroy. "Those continued from page 10 who can speak to us are very happy "There is no credible about it. Those who can't speak - we've Repercussions from what's currently evidence of a mortality measured every quality of their lives: happening in California have been felt crisis among those who are behavioral progress, physical aspects of across the nation from Tennessee to homes, integration, employment, and so Pennsylvania. The Strauss report is placed in community care on. I've talked to thousands of people. being touted by such pro-institution settings," writes Dr Jane Everybody says they're doing great, groups as Voice of the Retarded (VOR), a they'd never go back. So what is this parent organization, as definitive proof Mercer in her report, commotion about? It's bizarre!" that people with mental retardation are Statistics Should Not Conroy thinks the Strauss report will much better locked up than loose in the Undermine Freedoms be debunked. "The essence of science is community. replication," he says. "No one has Had there been no Strauss report, for Developmentally replicated his findings, certainly not I." most likely there'd be no move for a Disabled Californians." The Strauss report, he said, found a California moratorium on people with 72 percent higher mortality rate in folks disabilities moving out of institutions into who moved out of institutions - whether the community. Senator Feinstein would they lived in group homes or with mom not so firmly believe that lives are at state to create placements for their and dad made no difference. This stake, or that people with mental children with developmental disabilities finding seems very odd to people like retardation are being forced out onto the in the community and sued the state of Conroy. In his own research, Conroy streets. The San Francisco Chronicle's California. This resulted in the 1993 said, "I get the total opposite." That's series on community versus institution Coffelt settlement, in which the Califor- why, he said "you can't just depend on wouldn't have had the same bite - it nia Department of Developmental one researcher. Other researchers have probably wouldn't have even been Services agreed to move at least 2,000 to find it out in other states." written. people with developmental disabilities But the report, coupled with the from state developmental centers into anecdotal evidence of community the community in five years. California placement gone wrong, has brought the lived up to its agreementwhich "The great victory is that exodus from California institutions to a sparked the backlash documented and 2,300 people have gotten virtual halt, even without a formal supported by the Chronicle. a shot at life outside an moratorium on moves into the Mercer's report insists there's "en- community. couraging evidence that the community institution," says Conroy. "There is no credible evidence of a placement has enriched the lives of many mortality crisis among those who are developmentally disabled persons." As placed in community care settings," part of the Coffelt agreement, Dr. James He compares the Coffelt settlement writes Dr. Jane Mercer in her report, W Conroy, Ph.D., an independent with the 1978 Pennhurst case in "Statistics Should Not Undermine evaluator, has been conducting a study of Pennsylvania, which moved over 1100 Freedoms for Developmentally Disabled the effects of community placement on people into the community, and which Californians." Mercer, a sociologist, is those moved into the community. (See he evaluated. "I tracked all those also from the University of California at pages 18-22 of this TASH Newsletter) [Pennhurst] people every year right up Riverside. The Conroy study did not receive any to today. There's no question of 'in the Her report, compiled in the wake of mention in the Chronicle series, either. community' or 'institution," because the Strauss report, was released last July, Conroy matched 118 "movers" with everyone went to the community. Based a year after the Strauss report. "The 118 "stayers"of the same age and sex and on past years, 15 per thousand people statistics on death rates are incomplete with similar levels of disability and per year die in institutions. By 1990, and certainly misunderstood," it says. found, not surprisingly, that the movers 182 people would have died. Instead, Mercer's report received no press at all, indeed were now able to get out more all those people moved into the commu- in stark contrast to the Strauss report. and socialize; that they had friends, went nity and only 132 people actually died." Mercer's report outlines the history to church, attended school, went to the Originally the project Strauss worked of California's most recent move from mall and other places people socialize. on was run by Dr. Richard Eyeman. He institutions: that in the 1980s, a group "The great victory is that 2,300 retired and the project was continued by of parents grew tired of waiting for the people have gotten a shot at life outside continued on page 12
PAGE 11, TASH Newsletter,March 1998 7ri DE-INSTITUTIONALIZATION
FIGHTING TO KEEP 'EM IN ADAPT, People First and Senior groups, continued from page 11 and they need to work together." Yet, the Strauss report Maybe someone needs to tell that to Strauss, who was advised to do a mortal- remains a powerful gun. the Califomia Medical Association. They're ity investigation. "He did so," says The finger on the trigger one of the groups who passed a resolution Conroy, "but with very complicated for a moratorium. "There's been a lot of mathematical models. After his adjust- of that gun is the Voice of reflection in the CMA over the resolution ments, he claimed that the rate of death is the Retarded, a small but they passed," says Mark Polit, President of higher in the community than in institu- the Alameda County Developmental tions." potent pro-institution Disabilities Planning and Advisory Another researcher with the same group that has strong ties Council. "They probably realized it was data would get very different results, with unions representing passed with incomplete information, only Conroy thinks. "Cold fusion was hearing one side of the story as well as published," he points out, "and found to institution workers. putting them in the uncomfortable not be true.It was a great stir, a huge California CASH/PCR is position of suggesting we keep people in controversy, widely published, but never Developmental Centers because of lack of replicated." allied with VOR. adequate medical care in the community Yet, the Strauss report remains a If that is true, they need to not be the powerful gun. The finger on the trigger cause of inadequate care." of that gun is the Voice of the Retarded, And the resolution passed by the a small but potent pro-institution group confident that the battle against Arc? "A lot of people in the Arc don't that has strong ties with unions repre- California's institutions will be won. even realize they have a moratorium senting institution workers. California "What we have done is almost com- resolution," says Polit. "It was drafted by CASH/PCR is allied with VOR. pletely stop new admissions to the CASH/PCR members on Arc's board and "The attempt at reconciliation and Developmental Centers. That's a major then presented to the group." He says Arc finding common ground has failed step forward," says Bob Little, whose has "since issued a clarification" but that because of bad faith with VOR and daughter with mental retardation lives in they're still "divided" over the matter. CASH/PCR," says Conroy "They come to the community Bob is also a member of the table, negotiate compromises, then People First, a self-advocacy group. betray them behind your back. They've "Parents of young children with disabili- done this in Pennsylvania, Montana, ties no longer think about putting their Even with foes like Tennessee, Florida and Connecticut. children in Developmental Centers." VOR, pro-community They have us running scared right now, The only pro-institution group, he says, family members are still but the facts are so far in our favor, so are the older parents "who are afraid of clear. Thirty years of research, there has what they did fifty years ago. They confident that the battle never been a contradictory finding." regret it, and they feel guilty about it. against California's Conroy spoke with Ed Bradley from Now they have to face the fact that they institutions will be won. 60 Minutes a few years ago, during made a bad decision about it." filming of a story on state institutions. In order for people with disabilities "What we have done is He says Bradley told him that as of who move out of institutions to be full almost completely stop 1995, VOR had a $1.3 million war members of the community, the commu- chest. Yet, the group appears to have nity must change, says Little. "How do new admissions to the only 600 members nationwide. Some you change the attitudes of communities Developmental Centers. VOR leaders, such as Polly Spare in so people are more welcome when they That's a major step Pennsylvania, are open about receiving come? Some of us think we have to go funds from unions that support workers out and sell this idea to the city council, forward," says Bob Little, in institutions. Some disability rights the mayor; let them know there are whose daughter with advocates have wondered whether some changes that are occurring. groups such as VOR and CASH/PCR are Things like sheltered workshops are no mental retardation lives merely fronts for the unions and not longer appropriate, and so on. That in the community representative of parents at all. there needs to be access and transporta- Even with foes like VOR, pro- tion. A whole infrastructure that needs community family members are still to be in place. That there's a need for 78 continued on page 13 PAGE 12 TASH Newsletter, March 1998 DE-INSTITUTIONALIZATION
FIGHTING TO KEEP 'EM IN they lived and picked their staff, he said. continued from page 12 'If they couldn't, then a strong attempt "In order for people was made to get unpaid circles of support The division exists in part because with disabilities who including family members, neighbors, those fourteen pages of headlines about move out of institutions churchgoers, and so on to help make community-living-gone-bad are true those choices. In Oklahoma, absolutely stories. Of course, there are also thou- to be full members the strongest, most positive outcomes sands of true torture tales about life of the community, were from supported living." inside institutions, but it is clear that If groups like CASH/PCR, VOR and institutions do not hold a monopoly on the community must unions representing the workers inside horror stories. change.. .there needs institutions get their way, thousands of "The most important things that lead to be access and Californians will never get the chance to to abuse are when people are isolated live on the other side of the wall. The from their communities or other people, transportation. A whole outcome of the battle in California will and when people are put in a position of infrastructure [that] needs most likely foreshadow similar battles in lack of power; when their caretakers have other states. lots of power over their lives, and when to be in place." Unfortunately, the message that has they're taught to obey" says Polit. "Those been sent across the nation from Califor- are the key factors that lead to abuse. nia is that deinstitutionalization wasn't Those factors exist disproportionately in working. But the message is wrong. It is ment where they could live on their institutions." But, he goes on, "There are working, and California disability rights own," says Wolfe. "They could choose also some group homes that are isolated, advocates are already eyeing the next the supports they want. Maybe a where the caretakers have a dispropor- battle: getting more consumer-controlled neighbor, a best friend, or someone from tionate amount of power." support services, creating a system where a service provider. The Supported Living Abuse can happen both in institu- the money follows the person, so that agency is more like a service broker. The tions and in the community. But there's person can live the way she wants to live, consumer would get the in-home services one clear difference, says Polit: It is like every other American. possible in the community to be free. they need. It's happening here in "Moving people into our communities is California. A lot of people who are Josie Byzeh works as a Civil Rights Specialist about freedom. It's about civil rights.It's coming out of the institutions are going for the Pennsylvania Coalition of Citizens with Disabilities and is a member of ADAPT about access to enjoyable and stimulating into supported living.It's more creative." things. None of us would choose to live "We're just getting a toehold on Reprinted with pennissionfrom The Ragged Edge, January/February 1998. To subscribe in an institution." supported living," says Ellen Goldblatt, to the Ragged Edge, write The Advocado The argument for or against commu- Senior Attorney for Protection and Press, Box 145, Louisville, KY 40201. nity has been framed as being between Advocacy, Inc. of California. "The idea is institutions and group homes. But some that people with disabilities control their advocates don't see it that way Take homes and the service providers come and go, and the level of service goes up institutions completely out of the picture, It is with deep sadness that they say; group homes will be the next and down as people need it. Supported we announce that our long dinosaur to disappear. living separates housing from services; time friend, Brock Comegys, "Most people don't want to live in a you rent your apartment, buy your home, has passed away. Brock and group home either," says Wendy Wolfe, and then get a provider. If the provider his wife Addie have been an advisor to Bay Area People First. "Like changes, you don't have to move." TASH members and partners nobody's ever heard of owning your own "We need to get more into supported in the fight for equity and home, or shared housing. If you think living,' says Bob Little. "We must have the diversity for over fifteen about the possibilities, you can work with dollars from the institutions flow into the years. We offer our heartfelt your community and create them." community, with the person. In Tennessee, thoughts to Addie and the rest of Brock's family. We Many advocates are pushing beyond people have control of their own dollars." "Look at what happened in Okla- also express our sincere the group home model to supported appreciation to all the living, which is very similar to the homa,' says Conroy. "The Hissom TASH members and others personal assistance services used by Memorial Center closed, and no one was who have made donations to people with physical disabilities. placed in a group home. Everyone Went TASH in Brock's honor. "The person could have an arrange- to supported living." They picked where
PAGE 13 7 9 TASH Newsletter, March 1998 MARCH 1998
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We offer our thanks to the 1997 Inclusion Roundtable moderators, Dorothy Kerzner Lipsky and Alan Gartner of the National Center on Educational Restructuring and Inclusion (NCERI), The Graduate School and University Center; The City University of New York, for their invaluable assistance in summarizing the roundtable proceedings. 1997 TASH Annual Conference: Inclusion Roundtable
nce again, we were honored states must enact placement-neutral to convene the Inclusion funding arrangements. Roundtable. Presented below are excerpts from the Special Frank Laski:I think the 1997 remarks0 of each of the panel members. Amendments are actually quite revolu- They included, in the order in which they tionary in terms of what they do for spoke: Frank Laski, Immediate Past education is to inclusion and, particularly, the require- President, Executive Board, TASH; Liz ments and the mandate that regular Healey, Member, Pittsburgh Board of be seen not as a education teachers participate in the IEP Education and President-elect of the meetings and a few other things. Parents TASH Executive Board; Bill Henderson, place, but rather participate in the placement and hope- Principal, O'Hearn School, Boston Public fully we will be able to talk about how we Schools; Carmen Alvarez, Vice President can use those to really move things along. at Large (Special Education), United as a set of supports Federation of Teachers; Richard Villa, Liz Healey: Several years ago, LRE Consultant for the Los Angeles that can be maybe 4-5 years ago, we developed an School District, per the Chanda Smith early intervention mosaic program. We consent decree; and Tom Hehir, Director, provided in any were committed to transforming all of the Office of Special Education Programs segregated early intervention programs (OSEP), U.S. Department of Education. and supporting all of the young children In concluding the panel, Alan setting, including in early intervention who were served Gartner dubbed the newly reauthorized within the City of Pittsburgh in places IDEA, the Inclusion Development and the general where other kids their ages were. We are Expansion A. He pointed to the now providing early intervention and I language of the Act's "findings,": that education think it's up to 156 sites. We did that very special education is to be seen not as a deliberately because we knew that their place, but rather as a set of supports that parents would feel that when they can be provided in any setting, including classroom graduated from early intervention and the general education classroom; as well went on to school age programs they as the Act's requirements that (1) school should continue to be with everyone else. district's give consideration to factors That has created a really healthy tension. other than disability that may be affect a We were able to get the Board to adopt a student's performance; (2) a general measures are to be developed to include policy in support of inclusion. We had a educator must be on the IEP team (if the all students in these assessments and policy of doing that, but it was hard to student is or may be participating in the these results are to be made public; (6) change a big system. We have this general education curriculum) ; (3) a IDEA funds can be used to implement tremendous leverage where parents want decision to exclude a student from any schoolwide improvement plans and can their kids to be there and, yet, I can't say aspect of academic, extracurricular or be of more than "incidental" benefits to that we are doing a great job with all nonacademic activities must be justified; general education students; (7) parental those kids and all those schools. (4) the general education curriculum is to rights to participate in the development be considered the norm for all students; of their child's program are enhanced; (8) Bill Henderson: As the building base (5) performance goals must be estab- IDEA personnel preparation funds may administrator, the most glaring impact of lished for students with disabilities, be used to train general education the new IDEA re-authorization to me is which are to be drawn from the goals personnel who will be working with whether or not the children in my expected of students in general, and that students with disabilities; and (9) the continued on page 16 PAGE 15 8 TASH Newsletter,March 1998 INCLUSION ROUNDTABLE
1997 TASH Annual Conference: the day for teachers, general ed, special In addition to that, of course, we Inclusion Roundtable ed, related services to meet around the have got to have ongoing, meaningful continued from page 15 children with disabilities. The best way professional development in schools, to move children in and out is to talk districts and organizations. Providing in building are included or in substandard, about them with the parents and whom- service has to provide quality models of separate classrooms. They now have to ever to see what's working and what's not. staff development. I see too few places participate in the same curriculum and The problem has been there's no time to where that is truly apparent. I also think same activity So if third graders are meet. You can't meet with them at lunch that we in our professional organizations, supposed to read the book, "Charlotte's time, you can't force them to come in the associations and unions have got to do a Web," everybody does "Charlotte's Web." morning, you have to put that time in better job of instilling within our mem- If sixth graders are supposed to study during the day. So through the LRE bership the ethic of ongoing professional world geography, everybody studies it.If initiative, we are building time during the development. We tell our students that fifth graders are doing a unit on bones, day, we are mandating professional we want them to be ongoing, lifelong everyone does it.If the first, second, and development, we are not going to put learners. How are we going to model third graders are playing kick ball, people in a program or children, because that for them? everybody does it.If the seventh graders it is really negligent to put children in a are doing something with the cigarette program for disabilities without proper Tom Hehir: In relationship to the prevention program, they all do that. And training of the staff, so that they can get IDEA 97 Amendments, one of the things that has some implications because I the outcomes that we all want. that I think is important to understand is think by and large for many kids who The other thing from IDEA that "is through this re-authorization process that have been in substantially separate big" is now that the general ed teacher the guts of IDEA are the same as the old classes, particularly in multiple grade must participate in the IEP conference. law. Children continue to be entitled to classrooms, the teachers have felt in the What would you need to keep this kid in free appropriate public education in the past that they did not have to do the general ed? I might need a paraeducator, I least restrictive environment. Based on whole curriculum, but now we do. might need a specialist. If we don't have individualized assessment with due enough support in General Ed, there is process protections and I think that is Carmen Alvarez: As a union leader, probably going to be a big bump in something that needs to be emphasized. we are absolutely in favor of appropriate special ed referrals, because general ed I also think that it is quite extraordinary integrated programs. I think most people teachers are going to see that they can in many respects that we were able, as a understand that about the unions. I probably get support in general ed if they broad community, to get a piece of think the disagreement is to the degree. have a special ed kid, and that they could legislation to this Congress that has so For us, we do not believe that there get a paraeducator or somebody else in much in it that promotes inclusion of should not be a continuum. We do there. We want to create a situation in children with disabilities. believe that there should be a continuum General Ed where there is support there I think one of the challenges that we of service from self-contained to residen- already. We want the specialist for have in this particular instance is making tial to general education with support. behavior, we want the specialist for this an all kids issue and one of the things We believe in the whole continuum. everything else in general ed so there is that we get criticized for in regards to this However, we have also come a long not a need to refer. policy is that it is okay in some states, not way and we realize more children should all states, to expel children who don't be placed in integrated places in general Rich Villa: Now in terms of barriers have disabilities and not provide services ed part of the day or all of the day. that I see, one of the major barriers that for those children, but you can't do that That should be increased and it is not has been addressed a couple times on this for disabled kids. It doesn't make any about mild to moderate; it could be any panel has to be inadequate teacher sense for any kid to be disengaged from disability from severe to whatever. The preparation. If we are going to be education. When we were going through experts need to be available to the staff. successful in meeting the needs of the re-authorization process and we were The biggest fear the general ed teachers children, in those general educational pushing this issue, and this was a bottom have in New York City is, here we have settings we have got to make major line issue, we were joined by such liberal 28, 29, 30 kids with a variety of disabili- changes: increase service and teacher groups as the Chief of Police Association ties, and I don't have the expert with me education. Where we begin to give in supporting our position. Increasingly I to help me acquire those tools.I think everyone the strategies, the skills they think people are realizing that it doesn't the whole aspect is interesting. need, to meet the needs of a diverse make any sense to put kids out in the Liz was talking about the profes- group of students, and also to have a street on any level. One of our challenges sional development. In New York City, conceptual understanding that they are is to make many of these issues all kid the union is extremely involved in not going to just be technically capable of issues, and to look for ways to do that. creating and moving forward in the least educating one kind of child who carries a There are a number of things in the restrictive environment initiative. What particular label. That their good teaching re-authorization that I am very pleased we are doing there is crafting time during is what it has always been: good teaching. continued on page 17 PAGE 16 8 plASH Newsletter, March 1998 INCLUSION ROUNDTABLE
1997 TASH Annual Conference: What we have found, and this is tion of when you do not educate children Inclusion Roundtable changing, and has to change because the with non-disabled peers and again that is continued from page 16 law requires it to change, is that more than supporting the thrust of Inclusion. There half of the children with disabilities have are also a number of other things: The with: there is a fundamental principal been excluded from state-wide assess- regular education teacher participation that runs through a number of Amend- ments in some states, it is over 90 we think is critically important. From a ments in IDEA 97 which, simply put, is percent. In other words, if you are in data perspective, more and more disabled that children with disabilities should be Special Ed, there is an assumption that kids are being educated in general learning in school what other children are you can't do it, and you shouldn't be education classrooms. That's a trend, a lot learning. Schools should be accountable assessed. When the heat went up on of that trend is due to the people in this for that learning. This is what I frankly educational accountability, the referral for room as well as this organization. always believed IDEA was about.It special education went up also. There was What we find in the research is that, wasn't necessarily explicit and when we a vehicle whereby people could avoid often particularly, this is true at the high started proposing language around access accountability That doesn't exist any- school level more than the elementary to the general curriculum, we had groups more. It is illegal to exclude kids from level, the general ed teachers receive no within special ed who were saying, assessments. The law is very specific that support from Special Education. That "That's not what the law requires." appropriate modification has to occur, and kids are, for lack of a better term, Special Education should be the for a small number of kids for whom it dumped. It's a real thing and it does vehicle by which children have access to doesn't make sense (a very small number) happen, we should not just be satisfied the general curriculum, not an ending of to be included in the regular assessment with the notion that children are in itself.If we look at 22 years of imple- process, there must be an alternative that regular classrooms. This is particularly menting the Act for too many kids, the tracks that as closely as possible. The true for children who have high instance Act has been access to special ed and not results must be publicly recorded. Those disabilities. Kids who are learning access to education. That is a major are major shifts in the legislation. disabled often receive next to no support change in the thrust of IDEA. The IEP must also have an explana- when they are integrated.
TASH NOMINATIONS OPPORTUNITIES FOR LEADERSHIP :
Five of the fifteen voting positions on the TASH Executive NOMINATION PROCESS Board of Directors will be vacated in December, 1998. Members may nominate themselves or any other eligible The Elections Committee will accept nominations for new individual by submitting a letter to the Elections Committee. To TASH Executive Board Members through May 1st. Any TASH be considered, the letter must contain the following elements: member whose dues are current and who has demonstrated a 1. The name, address, daytime telephone number and e-mail commitment to disability advocacy is eligible to be nominated. address (if available) of the member making the nomination. 2. The name, address, daytime telephone number, and e-mail CRITERIA address (if available) of the individual being nominated. Nominees will be considered who meet some or all of the 3. A letter stating the reasons the individual is being nominated following criteria. Nominees are sought who: including specific reference to the above list of criteria. The Are longstanding, active TASH members letter should be no more than one page in length. Have been active in a TASH Chapter Have made significant contributions toward improving the Please note that submission of a nomination does not guarantee lives of people with disabilities. placement on the final ballot. Are self-advocates or family members Have skills to contribute in the areas of fund raising, All nominations and support material must be received by May 1, 1998. development, business management or legislative advocacy Have demonstrated progressive leadership in the area of Materials may be sent by fax (410-828-6706, attn. disability advocacy Elections Committee, c/o Nancy Weiss), by e-mail ([email protected]) or mailed to: The Elections Committee is committed to building diversity on the Board with regard to gender, race, nationality, and discipline. TASH Elections Committeec/o Nancy Weiss 29 West Susquehanna Avenue, Suite 210 Baltimore, MD 21204
PAGE 17 TASHNewsletter,March 1998 INSTITUTIONAL CLOSURE STUDIES The Deinstitutionalization ofAMERICA
Following are excerpts from a perceptions of quality among parents and comprehensive study conducted other family members rises. by James W Conroy, Ph.D. on The measurable benefits from moving the outcomes of moving people with to the community can be summarized. developmental disabilities from institutions to `:;k1kIk'lk The central question of studies of the communities in the United States. The outcomes of community placement has activities and outcomes tracked in this report been: "Are people better off, worse off, or occurred between 1975-1997. In the ensuing about the same?" The phrase "better off' 22 years, Dr Conroy and his staff performed inherently implies the notion of "quality face-to-face visits and collected quality of life of life." However, nearly all people have data from over 33,000 participants during their own complex of factors that they the course of 77,821 visits. believe contribute to "quality of life." Dr Conroy is president and founder of Usually their beliefs are not explicit, but The Center for Outcome Analysis, a not-for- rather, they form an internal set of values profit firm founded in 1985 for the purpose of and judgments that are not always clearly research and policy analysis in human defined. In this situation, the best services, with emphasis on programs that available scientific approach is to address assist and support people with disabilities. Interviews with Dr Conroy, and as many aspects of "quality of life" as are From 1975 to 1992, Dr Conroy was the references to his work, have appeared in the reliably measurable. Some of the dimen- Director of Research and Program Evaluation New York Times the Wall Street Journal the sions of "quality of life," or outcomes, that at the Institute on Disabilities of Temple Philadelphia Inquirer, the Chicago Tribune, social scientists know how to measure, University. Dr Conroy's expertise is in Nightline with Ted Koppel, the ABC Evening include: applied research in the human services, News with Peter Jennings, and 60 Minutes
including program evaluation, policy with Ed Bradley.. independence analysis, cost effectiveness analysis, and productivity quality assurance systems. Dr Conroy began Research Shows Multiple Major integration doing research in the developmental disabili- Benefits of Community access to the places and rhythms of ties area in 1970, and has continued to work Placement mainstream life in this field since then. He has also per- In the past 20 years, a body of access to services when needed formed studies in mental health, aging, child literature has developed on health welfare, drug abuse treatment, education, deinstitutionalization of people with health care utilization housing, AIDS, immigration, criminology and developmental disabilities.It shows what health care satisfaction prisons, and military/defense matters. happens to the quality of life of people mental health Dr Conroy has served as a consultant to with developmental disabilities when they mental health care utilization and 18 federal agencies, to more than 100 state move from large congregate care settings mental health care satisfaction and local agencies since 1970, and has been to community living. (Craig & McCarver, friendships the Principal Investigator for 65 governmen- 1984; Haney, 1988; Larson & Lakin, 1989 physical comfort tally and privately funded grants and and 1991.) This body of literature is privacy contracts. He has written more than 180 remarkably consistent. Without contra- individualized treatment publications in the fields of disabilities, aging, diction, it demonstrates that people are freedom from excessive restraints child welfare, and other human service fields, "better off' in most ways when they leave (physical, chemical, and authoritarian) including 14 articles in professional journals, large congregate care settings for commu- respect for dignity and human rights 7 book chapters, and 162 formal research nity living in small, family-scale homes. by staff and others reports to government agencies. Correspondingly, the satisfaction and continued on page 19 PAGE 18 8/1TASH Newsletter, March 1998 INSTITUTIONAL CLOSURE STUDIES
The Deinstitutionalization * * * * * * * * * * recent placement (1992): 14%. Average of America improvement in challenging behavior continued from page 18 Without contradiction, fit' areas: 1% upon placement; 3% three demonstrates that people are years after placement; and 6% as of the support for choicemaking and most recent measurement (1992). learning to make choices "better off" in most ways when Consumer Satisfaction: The personal satisfaction with multiple they leave large congregate Pennhurst Study included repeated aspects of life care settings for community interviews with 56 people who were able satisfaction of the family members living in small, family-scale to communicate verbally The number of and "circles of friends" who care people reporting satisfaction with aspects about the person homes. Correspondingly, the of life in the community was approxi- the overall "locus of control" of the satisfaction and perceptions of mately double what was found in the pattern of life (by paid professionals quality among parents and institution. There were no areas of and/or by the person and non- other family members rises. decreased satisfaction over the entire professional relatives, friends, and course of the study advocates); power, control, choice, Family Satisfaction: At the begin- self determination. * * * * * * * * * * ning, 83% of families reported satisfac- tion with Pennhurst, and 72% opposed When multiple aspects of quality of cut). These two studies are of special movement to the community However, life, or outcomes, are measured, the interest because both culminated in total there was a dramatic change in family results are likely to be "mixed." A given closure of the institution, with nearly all attitudes after community placement. In social intervention may improve peoples' residents moving to community settings. a 1991 community survey of these same lives in some areas, while diminishing At the end of that section appears a families, the results from over 500 them in others, and leaving still other summary of several other large scale responding families concerning their areas unchanged. This is a typical result, studies of community placement pro- overall satisfaction with community for example, in the field of substance cesses in California, New Hampshire, living were: Very Satisfied (65%); abuse treatment programs. New Jersey and Oklahoma. These Somewhat Satisfied (23%); Neutral (5%); However, the research literature on studies all included analyses of cost Somewhat Dissatisfied (5%); and Very community versus institutional living has effectiveness in addition to the quality of Dissatisfied (2%). not been mixed. Through the assessment life results. Amount of Service. People who of all of these quality of life dimensions, moved to the community began to receive Dr. Conroy's research in 16 states, and the Pennhurst Longitudinal Study more hours of developmentally oriented research of other scientists, has consis- Results: Pennsylvania service per month than similar people tently shown strong benefits associated The District Court's order in who stayed at Pennhurst (225 hours per with community placement. Further- Halderman v. Pennhurst resulted in the month versus 189 hours per month). more, the results have been extremely transfer of nearly all of the people living Day Activities. The proportion of powerful, in that improvements have in a large state institution in Pennsylvania people taking part in employment or an been documented in nearly every to small, supervised community living active day program increased from about measurable outcome dimension. Re- arrangements (CLAs) in the communities one-third at the beginning of the study to search in other nations (Australia, from which they originally came. Since practically 100% at the end of the study Canada, Denmark, England, France, 1978, Dr. Conroy and his colleagues have in the community Ireland, the Netherlands, New Zealand, individually monitored the well-being of Costs: The total public cost of serving Norway, Sweden) has revealed remark- each of the plaintiff class members the people who moved to community ably consistent findings associated with more than 1,700 persons every year. living arrangements was significantly less institutional closure [Mansell, J., & Following is a summary of the results of than for the people at Pennhurst (about Ericsson, K. (Eds.), 1996. the study through 1992 (the last year in $110 per day versus $129 per day at Deinstitutionalization and Community which Dr. Conroy directly supervised the Pennhurst). Today, community programs Living: Intellectual Disability Services in project). are just as able to obtain Federal Medicaid Britain, Scandinavia, and the USA. Lon- The adaptive behavior growth funds as are institutions, primarily through don: Chapman and Hall.] displayed by people who had moved to the Waiver Program. The following paragraphs contain a CLAs under this court order [was] The five years of the Pennhurst brief summarization of the results of literally 10 times greater than the growth Study led to the conclusion that, on some of the largest and longest lasting displayed by people who were still at average, the people deinstitutionalized studies of deinstitutionalization outcomes Pennhurst. under the Pennhurst court order were yet conducted: the Pennhurst Longitudi- Behavior Change. Average gain in better off in practically every way nal Study (Pennsylvania), and the self-care skills upon placement: 9%; 3 measured. For the people who moved Mansfield Longitudinal Study (Connecti- years after placement: 12%; and mo8 continued on page 20 PAGE 19 TASH Newsletter, March 1998 INSTITUTIONAL CLOSURE STUDIES
The Deinstitutionalization Brief Summaries of Other employ deinstitutionalization rather than of America Relevant Outcome Studies and reinstitutionalization as its primary continued from page 19 Tracking Projects strategy" (Conroy & Seiders, 1994). New Hampshire: From 1981 from Pennhurst to small community onward, Dr. Conroy was involved in * * * * * * * * * * residences, results were conclusive. studying the process of deinstitu- tionalization in New Hampshire (Bradley, The study also found that Mansfield Longitudinal Study Conroy, Covert, & Feinstein, 1986; people who had resided in Results: Connecticut Conroy, Dickson, Wilczynski, Bohanan, In Connecticut, Dr. Conroy and his & Burley, 1992). In January of 1991, the community settings during the associates followed 1,350 class members Laconia State School and Training Center entire course of the study had in CARC v. Thorne, to measure their closed. New Hampshire thus became the made significant gains in many well-being. At the beginning of the study, first state in which no citizen with a areas of quality of life most class members were in congregate developmental disability lived in a state care settings: state institutions, state institution. dimensions, including: adaptive regional centers, and private nursing All of the people who remained at behavior, challenging behavior, homes. Between 1985 and 1990, Laconia, a facility with a long and social integration, productivity, approximately 600 persons received honorable history, are now living in earnings, satisfaction, and community placements under the community settings. Most of the last consent decree. remaining group of people had serious family satisfaction. Approximately 69% of the persons behavioral or medical/health challenges. who received community placements Up until the final year, many state * * * * * * * * * * under the court order were labeled officials appeared to believe that the severely or profoundly retarded, com- institution would always be necessary Oklahoma: Since 1990, Dr. Conroy pared to 75% of the CARC class as a for some people. In the end, New has been working on a statewide quality whole. This showed that community Hampshire elected to demonstrate the assurance system in Oklahoma that placement included people with the most opposite. Even the most "medically covers 3,700 people everyone receiv- significant needs, rather than being fragile" people are now living and ing intensive services in the state. Among restricted to people gifted with high thriving in small, homelike settings. these 3,700 people are approximately ability levels. This achievement has an important place 1,000 Class Members in the Homeward From three separate studies con- in the history of developmental disabili- Bound v. Hissom Memorial Center ducted over a 5-year period, the people ties. New Hampshire was the first state litigation and consent agreement. In who moved from institution to commu- to show that communities can support 1995, Dr. Conroy reported that the nity were significantly better off in most all people, regardless of the severity of outcomes for the 520 "Focus Class of the dimensions that were measured. their disabilities. Members" (those who lived at Hissom on On the average, class members in CARC Dr. Conroy is continuing to perform or after May 2, 1985) were in many ways who received community living arrange- studies and evaluations in New Hampshire. the strongest and most positive he had ments made significant gains in adaptive New Jersey: In New Jersey, the ever studied (Conroy, 1996). These behavior after placement in the commu- Johnstone Training and Research Center extraordinarily positive outcomes were nity. Moreover, people labeled pro- closed in 1992. Dr. Conroy headed a 3 associated with a "new" kind of commu- foundly retarded made the greatest year project to track the former residents nity living arrangement. Nearly all of the proportional gains: more than 28%. and the quality of their lives. Two thirds Focus Class Members went from Hissom, The study also found that people of the Johnstone people went to other not into "group homes," but rather into who had resided in community settings state developmental centers (institutions). individually designed "supported living" during the entire course of the study had One third went to community settings. situations. Practically no one had more made significant gains in many areas of The conclusions of the research were that than two roommates, and most had only quality of life dimensions, including: both groups had experienced improve- one or none. This method of deinstitu- adaptive behavior, challenging behavior, ments in many dimensions of quality, but tionalization turned out to be the most social integration, productivity, earnings, the movers to community settings were successful. A summary table of the satisfaction, and family satisfaction. by far the most improved. Moreover, the outcome results is shown on page 21. During the course of Dr. Conroy's care for the people who moved to other California: Dr. Conroy is currently studies in Connecticut, it was determined institutions wound up costing more than heading a project that is tracking the that the cost of care at the Mansfield Johnstone, while the care for people who quality of life outcomes experienced by institution rose to $290 per person per moved to community homes cost less more than 2,400 people in California day, more than double the cost of services than Johnstone. Dr. Conroy wrote that who have been affected by the Coffelt in the community. "Future closure planning should, according to this and past research, continued on page 21 PAGE 20 8 6 TASH Newsletter, March 1998 INSTITUTIONAL CLOSURE STUDIES
The Deinsfitutionalization Family Attitudes Change * * * * * * * * * * of America Dramatically continued from page 20 It is well established that the During the course of majority of families of people living in Dr. Conroy's studies in settlement.(See related article on page institutional settings are convinced that 10 of this Newsletter.) Thus far, the their relatives are receiving good care, Connecticut, it was determined project has resulted in 13 major analyses and that they are in the best possible that the cost of care at the of the well-being of people who have situations for them (Spreat, Telles, Mansfield institution rose to moved out of Califomia's institutions Conroy, Feinstein, & Colombatto, 1987). $290 per person per day, more since the settlement (e.g., Conroy & For decades, however, some re- Seiders 1995a and 1995b, Conroy & searchers have openly questioned the than double the cost of services Seiders 1996, Conroy 1996). These strength of parental defense of the in the community. analyses employed multiple research institution's quality and appropriateness. designs, including pre-post, matched Klaber (1969) surveyed parents of people * * * * * * * * * * comparison, nonequivalent comparison in institutions in Connecticut. He found groups with analysis of covariance, and that more than three-fourths of them Community Living is Not family surveys. All of this work relied on were convinced of the excellence of the Without Problems, and face to face visits with the people and facilities. As he summarized, "The parents Requires Protections their caregivers, collecting a battery of ... wereconvinced of the excellence of the One question that continually arises reliable measures, plus surveys of every facilities in which their children were placed is "What is it about community living known close relative or guardian. ...The praise lavished on the institutions was that accounts for the clearly established In all of these studies, Dr. Conroy so extravagant as to suggest severe distor- superiority in so many qualities of life?" and his associates found that the movers, tions of reality in this area." The reasons why these benefits have so as in other studies, have experienced Although parents and other family consistently been observed are becoming major gains in many measures of quality members approve of the institution, and increasingly clear. The major reason is of life. They also found that community reject the idea of community movement, simply the smaller size of community care in Califa-nia costs a great deal less, these attitudes are not necessarily unalter- homes. Dr. Conroy believes that the even for similar people, than institutional able. Dr. Conroy first detected the organizational and economic literatures care. The cost analyses include consider- phenomenon of dramatic attitude changes are completely clear on the conclusion ation of transportation, day programs, in the Pennhurst Longitudinal Study that small group size for daily work and health care, and other relevant "hidden" (Conroy & Bradley, 1985). Before functioning produces higher satisfaction, costs. However, the Conroy group has community placement, the great majority of productivity, and efficiency This conclu- consistently raised concerns about the families opposed movement of their relatives sion arises from a multitude of studies of overuse of psychotropic drugs, the lack of into CLAs. After community placement, the human activity across a variety of attention to vocational programs, and the proportion of families strongly favoring com- settings. The best summary of 100 years serious underfunding of community munity placement rose dramatically, from of this research was provided by Gooding programs. They concluded that the less than 20% to over 60%. Similar results and Wagner (1985). Court in California must continue to were obtained in the Mansfield Longitudi- Specifically in the field of develop- demand high quality programs. nal Study in Connecticut. mental disabilities, Klaber (1968) was the first to point out the importance of small units for daily living and function- ing. Since that time, researchers in Hissom Outcomes Study Summary & Interpretation: developmental disabilities have continu- "Are Focus Class Members Better Off Now Than They Were Before?" ally added to the understanding that Quality Dimension Answer Strength of Inference smaller living units are associated with Adaptive Behavior Yes Strong higher quality of life and better out- Choice-Making Yes Moderate comes. Research has also shown that Challenging Behavior Yes Strong simply "breaking up" institutional wards Productivity Yes Strong into smaller "walled off' subunits is Integration Yes Strong emphatically not the same as moving to Developmental Services Yes Moderate genuinely smaller homes (Harris, Veit, Family Contacts Yes Strong Allen, & Chinsky, 1974). Medications Yes Weak For additional information on these studies, Health Care No Weak contact Dr James Conroy, The Center for Satisfaction Yes Strong Outcome analysis, at 615-520-2007, or send Overall Conclusion Yes Strong an e-mail [email protected] continued on page 22
PAGE 21 8' TASH Newsletter,March 1998 INSTITUTIONAL CLOSURE STUDIES
The Deinstitutionalization of America continued from page 21 Update on MiCASA Hearing References On Thursday, March 12, 1998, Bradley V, Conroy, J., Covert, S., & Feinstein, C. (I 986). Community options: advocates came to DC from across the The New Hampshire choice. Concord. NH: New Hampshire Developmental country and gathered on Capital Hill for Disabilities Council. a public hearing on HR 2020, the
Conroy,J., & Seiders, J. (1994). 1993 Report on the Well-Being of the Former Medicaid Community Attendance Residents ofJohnstone. Services Act (MiCASA). Supporters filled Project Report Number 5 of the New Jersey Strategic Planning Project. both the large hearing room and an Ardmore, PA: The Center for Outcome Analysis. additional large overflow room. The hearing was before the House Conroy, J., & Seiders, J. (1995a). Quality of Life Among Institutionalized and Commerce Committee, Subcommittee on Deinstitutionalized People in California: Preliminary Findings, 1994. Report Health and the Environment. The bill Number 2 of the 5 Year Coffelt Quality Tracking Project. Submitted to the was introduced by Speaker of the House California Department of Developmental Services and California Protection Newt Gingrich (R) and Minority Leader & Advocacy, Inc. Ardmore, PA: The Center for Outcome Analysis. Dick Gephardt (D) (an uncommon Conroy, J., & Seiders, J. (1995b). Quality of Life Among Institutionalized and partnership!) and when passed, will allow Deinstitutionalized People In California: Intermediate Findings, 1994-1995. any eligible person to choose to live in Report Number 3 of the 5 Year Coffelt Quality Tracking Project. Submitted the community rather than live in a to the California Department of Developmental Services and California nursing home or an institution. Protection & Advocacy, Inc. Ardmore, PA: The Center for Outcome The bill and the hearing were due to Analysis. the efforts of eight years of work led by Conroy, J., & Seiders, J. (August 1996). Final Results of the 1995 Family Survey. members of the national group, ADAPT. Report Number 11 of the 5 Year Coffelt Quality Tracking Project. Submitted to ADAPT leader, and TASH Executive the California Department of Developmental Services and California Board member, Michael Auberger, was Protection & Advocacy, Inc. Ardmore, PA: The Center for Outcome one of ten panelists who testified before Analysis. the Subcommittee. Mike was joined in Craig, E.M., & McCarver, R.B. (1984). Community placement and adjustment support of the bill by Gingrich, of deinstitutionalized clients: Issues and findings. In: N. Ellis and N. Bray Gephardt, presidential Medal of Freedom (Eds.), International review of research in mental retardation, Volume 12. Honoree and TASH Lifetime Member, Orlando: Academic Press. Justin Dart, Health Care Finance Admin- istration representatives, and Medicaid Gooding, R., & Wagner, J. (1985). A meta-analytic review of the relationship Commissioners from Oregon and Kansas. between size and performance: The productivity and efficiency of organiza- Those two states are running highly tions.and their subunits. Administrative Science Quarterly, 30, 462-481. successful model Personal Assistance Harris, J., Veit, S., Allen, G., and Chinsky, J. (1974). Aide-resident ratio and programs using Medicaid dollars. The ward population density as mediators of social interaction. American Subcommittee also heard from Voice of Journal of Mental Deficiency, 79, 320-326.1 the Retarded representative Polly Spare Howe, S.G. (I 866). In ceremonies on laying the corner-stone of the New York State and Victoria Brown of the National institution for the blind, at Batavia, Genessee County, New York. Batavia, N .Y.: Alliance of the Disabled (a small, rela- Henry Todd, 1866.) tively unknown group from the Subcom- Klaber, M. (1969). The retarded and institutions for the retarded - A prelimi- mittee Chairperson's district). Spare and nary research report. In S.B. Sarason & Ij. Doris (Eds.), Psychological Brown have aligned with union and Problems in Mental Deficiency (Fourth Edition). New York: Harper & Row. nursing home representatives against passage of the bill. Larson, S., & Lakin, C. (1989). Deinstitutionalization of persons with mental retardation: Behavioral outcomes. Journal of the Association for Persons with At a press conference prior to the hearing, Marcie Roth, TASH Director of Severe Handicaps, 14, 324-332. Governmental Affairs and Public Policy Larson, S., & Lakin, C. (1991). Parent attitudes about residential placement told the large assembled crowd that before and after deinstitutionalization: A research synthesis. journal of the "TASH will not rest until every American Association for Persons with Severe Handicaps, 16, 25-38. has the opportunity to choose to live in Spreat, S., Telles, J., Conroy, J., Feinstein, C., & Colombatto, J. (1987). the community" Look for more informa- Attitudes of families toward deinstitutionalization: A national survey tion about the hearing and the bill in Mental Retctrcicuion, 5, 267-274. future issues of the Newsletter 0 PAGE 22 TASH Newsletter,March 1998 QUALITY OF SMALL ICFs/MR vs. WAIVER HOMES
QUALITY in Small ICFS/MR versusWAIVER ffOME S
BY JAMES W. CONROY, PH.D Security Administration. It would, therefore, further. We decided to compare quality in seem clear that people can be better served, the Waiver to the small ICF/MR program. The A recent investigation of California's and at less cost, in flexible, individually de- small ICF/MR program has not been criticized Waiver program for people with development signed, non-medically dominated homes. by HCFA studies in California, hence it would disabilities, conducted by the Health Care Nevertheless, HCFA undertook a review appear that HCFA finds the ICF/MR program Finance Administration (HCFA), produced of California's Waiver program in 1997.It to be acceptable in quality harsh critical findings (HCFA, 1997). This took almost 6 months to complete. When If California's Waiver program is so piqued our interest, because we have not seen completed, a total of 91 California citizens "bad," is the ICF/MR program (HCFAs more evidence of poor quality among the Coffelt had been visited. For a population of 35,000 favored model of care) any better?This class members who have moved to Waiver Californians in the Waiver program, this cor- question is perfectly amenable to quantita- settings. We decided to investigate further. responds to a "margin of error" of plus or tive investigation. For similar people, are HCFA is responsible for two major fund- minus about 11%. (Political polls generally there any differences in quality and/or out- ing streams for people with mental retarda- aim for 5% or lower.) HCFA cited "resource comes between the ICF/MR program and tion and developmental disabilities. One is limitations" as the reason that it could not the Waiver program? called the ICF/MR (Intermediate Care Facili- visit a more adequate sample. This contrasted At the outset, however, we must recog- ties for [people with] Mental Retardation) with the fact that the California Waiver has nize that the people served in the ICFs/MR Program, and the other is called the HCBS grown from 3,000 to 35,000 people in just and the Waiver programs are significantly Waiver (Home and Community Based four years, and the annual Federal share of different. ICFs/MR serve people with fewer Waiver) Program. The ICF/MR program is the cost is 255 million dollars. independence skills and fewer challenging founded in a medical model of care, and is Most important for our Coffelt work behaviors, and Waiver homes serve people derived directly from a nursing home and was the HCFA claim that their surveyors who are more independent but have more institutional mindset. Waiver programs were had found that "Coffelt class consumers challenging behaviors. (We think future in- introduced in 1981 because of evidence that showed significant signs of loss of func- vestigations should be aimed to find out why medical domination of care tended to result tional ability or health status since being this is true it is certainly not true in ICF/ in more costly and less person-centered situ- placed in the community" Since HCFA MR and Waiver programs in other states such ations. The intention of the Waiver program only visited 91 people, how many of as Connecticut and Pennsylvania.) Compari- was to "waive" the extensive and medically them were Coffelt class members? Of sons of quality cannot proceed until these oriented standards and inspection require- the 35,000 Californians supported un- differences are controlled for. The compari- ments linked to the ICF/MR program. Un- der the Waiver program, approximately sons would be "apples and oranges." The fol- der a Waiver, states could receive Federal fi- 1200 are Coffelt class members, or about lowing Table shows the differences between nancial assistance for individualized, flexible, 3%. In HCFAs random sample, 3 out of the two overall groups of Coffelt movers. non-medical, community based supports. the 91 people visited would be expected Since the origin of the Waiver program, (statistically) to be Coffelt class members. Differences Between the People Living in all scientific evidence has supported the origi- How could any responsible govern- ICFs/MR and Waiver Homes nal evidence. Waiver programs result in ment agency base any kind of claim on cost savings and enhanced quality as com- visits to 3 people? Indeed, in our opin- Setting ICF/MR Waiver pared to ICF/MR programs. The Waiver ion, it most certainly should not have done tharacteristk N=447 N=490Signif. regulations required an "Independent Assess- so. To us, this strongly suggested a politi- Adaptive Behavior 35 59 .001 ment" of the quality and cost-effectiveness of cal agenda rather than a scientific one. Our each state's Waiver (section 4442.11 of Med- visits to thousands of Coffelt class mem- Challenging Behavior (High icaid regulations). To date, well over 100 in- bers over the years have supported radi- Score is Favorable, meaning 84 72 .001 dependent assessments have been conducted. cally different conclusions than those put less challenging behavior) There is not a single negative finding. The forth by HCFA from its visits with ap- independent evaluations are maintained in proximately 3 people. Age 39 38 .094 NS Baltimore at the central office of the Social We definitely had to examine the issue continued on page 24 PAGE 23 8 9 TASH Newsletter, March 1998 QUALITY OF SMALL ICFs/MR vs. WAIVER HOMES
Quality in Small ICFs/MR versus The results of our analyses for a series of outcome measures are shown in the table below Waiver Homes continued from page 23 Quality Comparisons in ICFs/MR and Waiver Homes For Two Groups of Similar Coffelt Class Members
As the Table on page 23 shows, the ICF/ Average for Average MR participants were significantly lower on ICF/MR for Waiver adaptive behavior abilities than the Waiver Residents, Residents, participants. This meant that the ICF/MR par- N=49 N=50 Signif. ticipants were much less capable of indepen- 1. Integration Scale 1.8 27 2.38 .019 dent self-care. The ICF/MR participants also 2.Self-Determination Index 23 32 2.92 .004 displayed significantly less challenging behav- 3.Physical Quality Scale 74 74 .29 NS ior that the Waiver participants. Age was simi- 4.Individualized Practices Scale 59 65 3.50 .001 lar for the two groups. 5.Normalization Scale 73 77 1.44 NS When the groups we want to compare 6.Adaptive Behavior Change are different, there are at least three methods During the Past Year 48 -.05 .18 NS available to compare "apples to apples." One 7. Challenging Behavior Change is the matched comparison method, which During the Past Year 3.75 19.78 3.05 .004 we have used in the past (the "twin study" 8. General Health Rating 4.2 4.1 .70 NS method). Another is purely mathematical cor- 9.Number of Dentist Visits rections for differences in groups (analysis of in Past Year 1.5 1 4 .95 NS covariance). A third is what we call the "simi- 10. Number of Doctor Visits lar groups" method, in which we select two in Past Year 10.9 17.7 3.82 .001 groups who have similar characteristics. For 11. How Easy Is It To Get the present analysis, we have used the simi- Medical Care Rating 4.0 3.5 1.91 NS lar groups method, partly because in prior 12. Percent of People Taking reports, we have already used the other two Psychotropic Medications 16% 34% 2.05 .043 methods, and partly because it is simpler to 13. Quality of Life Overall Rating "Now" 78.9 84. 1 2.65 .010 describe and interpret. 14. Cost of Residential Program $43,447 $32, 1 5 1 7.58 .001 The two similar groups were composed by selecting people with characteristics that were "in between" the ICF/MR and the Waiver groups. The best groups were those whose Hence, we could proceed to compare quali- that the Waiver group found their settings to be significantly more individual oriented than the ICF/MR group. adaptive behavior scores ranged from 30 to ties of life and service between these two simi- lar groups. 5. On the Normalization Scale, there was no significant differ- 50, and whose challenging behavior scores ence between the iwo groups. The above Table uses boldface to show ranged from 75 to 90. When this selection 6. For adaptive behavior, we found that 52 of the 99 people in was performed, we were left with 49 people dimensions on which one type of setting this analysis had been visited the prior year in their com- in ICFs/MR and 50 people in Waiver homes. or the other came out superior. The Table munity homes. Hence we were able to compute the amount of skill development or loss for those 52 people over the The statistical tests showed that the two sub- presents the results of t-tests, which reveal whether the difference between the two past year. There was no significant change in either group groups were now equivalent on the most in either direction. groups' averages is statistically significant. important dimensions, as shown in the fol- 7. The challenging behavior results were quite different. The lowing table. One column gives the actual t value, and 3.75 point improvement among the ICF/MR group was not the last column gives the level of signifi- statistically significant (this fact is not shown in the Table). However, the 19.78 point improvement among the Waiver Characteristics of Similar Groups Living cance. Any significance below .050 is con- sidered significant. Each line in the table recipients was highly significant, and was significantly dif- in ICFs/MR and Waiver Homes ferent from the ICF/MR group's gain. In this sample, chal- is discussed below lenging behavior outcomes were sharply superior among
Setting ICF/MR Waiver Waiver partidpants. Characteristic N=49 N=50 Signif. 1. The data from the Integration Scale, which counts the num- 8. The General Health Rating was similar for the two groups, ber of outings per week, showed that people in the Waiver as both Waiver people and ICF/MR people indicated that
Adaptive Behavior 40 41 0.188 NS homes tended to get out significantly more often than their their General Health was "Good." We interpret this to mean similar peers in ICFs/MR. that the iwo groups enjoyed approximately the same over-
Challenging Behavior (High 2. The Self-Determination Index or Decision Control Inventory all level of health. Score is Favorable, meaning 81 81 0.567 NS (DCI) shows that the Waiver group had significantly more 9. The average number of dental visits were about the same less challenging behavior) control over making individual choices in their daily lives for both groups. However, the average number of doctor than the ICE/MR group. visits were different, with ICF/MR people averaging 10.9 3. The ratings of Physical Duality (comfort, cleanliness, attrac- visits and Waiver people averaging 17.7 visits per year. For Age 41 39 O. 179 NS tiveness, personalization, etc.) were equal among both people with similar ratings of general health, one must won- groups. der why one group sees doctors nearly twke as often as the For these similar groups, the important 4. The Individualized Practices Scale, which measures the ex- other. characteristics were not statistically different. tent to which people are treated as individuals, indicates continued on page 28 PAGE 24 TASH Newsletter, March 1998 Q 1 CENTERAwieNNUMAN POLICY
-;,wo fundamental and related 4.There is a real imbalance of power questions challenge leaders who between people with disabilities and want to design and manage their assistants. relevant human service organi- zations for people who need extensive and continuing personal assistance because of Each of these approaches to defini- significant disability. The first of these tion captures a facet of power sharing questions concerns discovering ways for Power between people with disabilities and their people with disabilities to take a valued assistants. place in the membership and friendship Power sharing can be defined by its networks that define community. The effectpeople with intellectual disabilities second question, the focus of this article, Sharing can participate with satisfaction in concerns creating relationships and ordinary activities that reflect and supports that offer people the assistance strengthen their individual capacities and they require in ways that increase their gifts because of the active and imaginative effective control of their lives; power Between collaboration of their assistants. sharing will be the short label for this Power sharing can be defined by its basic question. mediumconscious relationships in which people commit themselves to People with overcoming the barriers that stand in the way of people with disabilities realizing Some might argue that the very idea their dreams, especially when these of power sharing is dangerously naive, if it Substantial barriers are erected by prejudice and is not disingenuous. There are at least discrimination. two different foundations for this argu- Power sharing can be defined by the ment. On one view, paternalism, profes- means that promote itassistants make sionalism, and prejudice deprive people Disabilities themselves physically and emotionally with disabilities of their rights; it is not available to understand, accommodate, power sharing that matters but power, and promote the explorations, participa- period. Disabled people must organize tion and contribution of people who and struggle to take the power that is and Their would otherwise be excluded or theirs by right. Those with power will not marginalized because of the social and give it up, those who are oppressed must physical effects of disability. confront them and seize it.It is pretty to Power sharing can be defined by its think of power sharing, but it amounts to Assistants absencepeople with disabilities are not little more than a New Age mask for the even ignored, others presume that they denial of real rights. BY JOHN O'BRIEN AND CONNIE LYLE O'BRIEN have nothing to say and no way to say it; On another view, to speak of power their contributions are not even rejected, sharing, at least as far as people with others presume they have nothing to significant intellectual disabilities are contribute; they are simply the raw concerned, is a euphemism, amounting which only has meaning among people materials for low status daily work and to a denial of the reality of disability. who recognize four contemporary truths higher status professional control. Once again the issue is power, period. about disability: Power sharing can be defined by the The strong and able must protect, guide, purpose it servescommunity life will be and oversee the weak and incompetent. 1. People with cognitive and communi- richer, deeper, and stronger when people If trendiness leads protectors to shirk cation disabilities are far more who have been devalued and excluded are their duty in the name of choice, vulner- capable of problem solving and welcomed and included and expected and able people will suffer the consequences decision making than most people assisted to contribute to common life. of abandonment. Again, it is pretty to have thought. Community life is narrowed, weakened, think of power sharing, but it amounts to and wounded when people are exiled, little more than a politically correct 2. People with significant disabilities isolated, and dominated because of rationalization for ignoring the obvious cannot take even the most basic disability People with significant disabili- incompetence of people with intellectual human and civil rights for granted. ties can be community builders, but only disabilities. if some of the people close to them join, These apparently divergent argu- 3.Even the deepest regard for rights and amplify, their desire to reveal and ments mark the boundaries for the does not erase vulnerability and the realize their dreams. discussion of power sharing, a discussion quandaries of protection. continued on page 26 9 25 TASH Newsletter, March 1998 BEST COPYAVAILABLEPAGE CENTER HUMAN POLICY
Power Sharing Between unsympathetic citizens, unmotivated and the prudence of a person's judgment; life People with Substantial unappreciative clients, punitive regula- directions that call on staff to learn to do Disabilities and Their Assistants tors, greedy tort lawyers, and domineer- new things in new ways; and the suffer- continued from page 25 ing parents. This abdication has at least ing imposed by unjust and devaluing two bad consequences: first, it makes social and cultural processes. room in the shadows for the misuse of No wonder that for years this heat Power sharing grows with the the real power staff and managers have in was quenched in safe controversies: recognition of inequality the lives of the people they assist, and When can clients attend the meetings Sharing power grows from an second, it directs attention away from the that plan their individual program? If understanding of who has got what kinds possibilities for increasing accomplish- they attend, how will we deal with them of power. Like anyone else, people with ment by sharing power. if they make unrealistic demands? disabilities have power commensurate The first step in dealing with the Which residents will be allowed to set with their position, their possessions, power shortage among staff and manag- their own bedtimes? How will we their skills and abilities, their interests, ers is to encourage them to analyze the motivate consumers to take more and their gifts. More than most others, power they exercise in the lives of the responsibility for following their pre- people with substantial disabilities are people with disabilities who rely on scribed regimen of treatments? What likely to be isolated from positions of them. People with significant disabilities issues can the self-advocacy committee be power, impoverished, left with underde- depend on the ability and willingness of allowed to tackle? Will we have a client veloped skills due to low expectations, their assistants to work ethically, imagina- on the management committee? Though denied opportunities to pursue their tively and unobtrusively A deeper these questions can generate much interests, and ignored as unable to bring understanding of the power assistants do controversy, they remain safe questions in important gifts to a community's life. exercise creates the possibility that they that none of their answers challenge the Enumerating these obvious limits will search for ways to collaborate with structures, ideas, and relationships that suggests an agenda for shared action to the people they assist to change the form the service. promote justice by increasing the power conditions of inequality that constrain Lately, some managers have found a of people with disabilities: and distort their relationship. new safety zone by diverting the funda- mental question of power sharing into open valued roles to people who Forming a new kind of issues of what techniques staff will use on have been relegated to the margin; organization people with disabilities within the Power sharing subverts the logic of existing structures. They are pleased to increase personal income and existing service organizations which is allow professional staff to adopt training economic security by decreasing based on the oversight and control of and counseling methods aimed at public expenditure on services that people with disabilities. Whether this bringing clients systematically toward the congregate and control and re- unilateral control is justified on therapeu- goals of "empowerment" or "self-advo- investing in cash transfers, vouchers, tic grounds or asserted as a necessary cacy" They are proud to share their new or subsidies; form of social control or presented as a vision of clients as "customers" and the key to the happiness of diminished many variations of "total quality manage- heighten expectations and offer people, its form allows no significant ment" techniques they have adopted. intense and relevant opportunities power sharing. Evolving new service They are glad to say that they are for education; forms, based on shared power between "shifting their paradigm." people and their assistants, challenges In the midst of all this comfortable reduce barriers to people developing and threatens everyone involved in the trendiness, a growing number of people their interests; and design and management of services. have found the courage to hold onto the Handling the question of how to question of power sharing, and with develop the hospitality of associa- design service organizations so that their exciting results. More and more people tions that will be strengthened by the staff share power with people who have with significant disabilities have found gifts of excluded people. obvious and significant differences in their voice and called managers and staff movement, communication, learning, into new kinds of relationships, relation- For many people with substantial and self control means holding onto ships which have encouraged them to disabilities who rely on services, shared something hot enough to melt many of leave behind restricting service forms. action depends on staff collaboration. the structures and alliances that make The heat of power sharing has melted Here, puzzlingly, there often seems to be managers' jobs tolerable. Plenty of controlling group residences and shaped a power shortage. Commonly, service emotion is bound up in organizational new forms of supported living and staff, and even agency or service system routines and rituals that allow staff and lifesharing.It has melted mindless or managers, present themselves as nearly agency sponsors to overlook ignorance of feudal occupational routines and shaped powerless in the face of heartless manag- a person's identity; uncertainties about new forms of supported employment and ers, stingy politicians, ignorant and what a person might prefer; conflicts over continued on page 27 PAGE 26 92 TASH Newsletter, March 1998 MARCH 1998
Power Sharing Between People with Substantial Disabilities and Their Assistants continued from page 26
active concern for career and vocation. These new containers for service, aimed at support rather than dominance, are in their formative stages. How exactly they will develop, and what more will be required remains to be seen. But the test of their effectiveness, and the means of steering their development, is clear: Read (or written) any good because of the way assistance is provided, do the people served, and their assistants, books, manuals, checklists, or become better and better able to collabo- rate on actions that contribute to a stronger, richer, more diverse commu- other products that you nity? This article is based on a longer consider to be invaluable report available from the Center on Human Policy. For a copy of this article, resourceslately? write to: We are updating the TASH resource catalog and invite you to submit for Center on Human Policy consideration resources (published or unpublished) that meet the following ATTN: Rachael Zubal criteria: Syracuse University 805 South Crouse Avenue Syracuse, NY 13244-2280 1)Importantthe material should make a significant and meaningful contribution to the field.
2)CurrentWritten within the last 2 3 years (exceptions may be made for work considered classic or seminal) The preparation of this article was supported in part by the National 3)Values-basedmaterials must support TASH values of inclusion, Resource Center on Community diversity, participation, and social justice. Integration, Center on Human 4)Reasonably-pricedso as to allow affordability to all members Policy, School of Education, Syracuse University, through the Materials written or produced by TASH members are especially encouraged. U.S. Department of Education, All materials will be reviewed by the TASH Publication Committee for approval. Office of Special Education and If accepted, TASH would negotiate a business arrangement with the author or Rehabilitative Services, National publisher enabling TASH to distribute the material. If you would like to submit Institute on Disability and Rehabili- a resource for consideration, please send a copy to: tation Research (NIDRR), through Denise Marshall Contract No. 1-1133D50037. No TASH Central Office endorsement by the U.S. Depart- 29 W. Susquehanna Avenue, Suite 210 ment of Education should be Baltimore, MD 21204 inferred. The Center on Human Policy subcontracts with TASH for Materials to be considered in the first edition need to be received by June 1, space in this Newsletter. 1998. Any materials received after that date will be considered for future editions. If you have any questions, please contact Denise at 410-828-8274 x103 or [email protected].
PAGE 27 9 3 TASH Newsletter, March 1998 1998 ANNUAL TASH CONFERENCE
/A \ 7., (7',../; 7 S - _` "Creating Futures Together" SEATTLE, WASHINGTON DECEMBER 25, 1998 Seaitle Sheraton and the Washington State Convention Center
\ -7 \ :` Each and every proposal that is sent into the TASH central office for consideration is reviewed by a panel of reviewers knowledge- able in that particular topic area. Reviewers are selected under each of the identified TASH Interest and Action Group topic areas. This year there are several new areas of interest on the Call for Presentations for which we have not yet identified a review panel. If you or a member you know is interested in being nominated to review proposals on any of these topics:
SpiritualityAging Creative and Performing Arts ManagementEthics/Rights Please contact Denise Marshall at 410-828-8274 x103 or [email protected]
The current climate is one of change and restructuring in issues that affect people with disabilities. The TASH Conference has always been a place where the best hearts and minds concerned with disability rights issues gather. This year the conference commit- tee is looking for topics that focus on building alliances, pushing boundaries, and working together to ensure that the changing climate is one that continues to forge the path for truly inclusive communities. In case you missed itThe 1998 TASH Call for Presentations is out! Proposals are to be postmarked by March 3 15'.To obtain a copy of the application, call the central office at 410-828-8274 or visit the TASH Homepage at www.tash.org.
Quality in Small ICFs/MR versus available to us cannot settle this question. perior on 1. Even that one, use of psycho- Waiver Homes 12. The Overall Quality of Life Rating "Now," which is usually tropic medications, was tempered by the continued from page 24 obtained from a third parry informant and includes 14 di- possibility that the medications may have mensions of quality, showed that people in the Waiver set- been appropriate and useful, as judged by 10 On the item "How Easy is It to Find Medical Care for This tings were rated as having a significantly higher quality of Person?" the responses were similar with both groups indi- life than their similar peers in the ICF/MR settings. behavioral outcomes.In any case, the cating "Easy." The difference between the ICF/MR average 13. Finally, we examined the average cost of each placement. weight of these data clearly favor the Waiver of 4.0 on our 5-point scale and the Waiver group's average Our data source was the DDS reimbursement rates for each settings in many areas of quality, for com- of 3.5 was not statistically significant. Hence we conclude type of community home.It is well known that Waiver parable people.Finally, the Waiver reimbursement rates are lower than ICF/MR rates. That is that there is no overall difference in the ease or difficulty of program's costs are considerably lower than obtaining health care in ICFs/MR versus Waiver homes. usually justified by the fact that the two programs serve 11. The percentage of people taking psychotropic medications very different kinds of people. those for ICFs/MR for comparable people. was significantly different beiween the two groups. We found The data show that, for comparable groups that the percentage of Waiver people taking psychotropic However, the present analysis concerns of Coffelt class members, Waiver homes medications was double that of the percentage of people in two very similar groups of people. The tend to yield higher quality, at lower cost, the ICFs/MR. We would generally interpret this as an indi- than the ICF/MR model. cation of higher quality in the ICFs/MR; however, the most Waiver costs average only 74% of the ICF/ appropriate interpretation may not be that simple. Even MR costs in this sample. This is a large though the groups are now similar in challenging behavior and significant difference. For additional information on these studies, (both groups average 81 points), the Waiver group izained These findings are obviously quite dif- contact Dr James Conroy, The Center for almost 18 @nts in the past year. It is possible that the use ferent from the conclusions reached by Outcome Analysis, at 615-520-2007, or send of psychotropic medications played an important role in these an e-mail [email protected] dramatic improvements among the Waiver recipients. The HCFA (1997). Out of 13 important dimen- final word on the appropriateness of these medications will sions of quality, Waiver settings were supe- require further research and clinical investigations; the data rior on 6, and ICFs/MR were possibly su- PAGE 28 9q TASH Newsletter, March 1998 SELF-DETERMINATION CONFERENCE
iff Achieving Individual and Family-Directed Community Supports
JuDJ7J :cD:-7.7, 7 DDT PiratimmempolLis Helm andTOTIT'S-
Co-sponsored by TASH and The National Program Office on Self-Determination, a project of the Robert Wood Johnson Foundation. This exciting two day conference is not to be missed! Join international leaders in the self-determination movement for interactive, in-depth discussion of the hot issues! SPECIAL DINNER PRESENTATION FEATURING C. EVERETT KOOP, M.D.
Speakers Include: Allen Bergman Valerie BradleyMike CallahanJim ConroyRobert GettingsBob KafkaMary Kay Kennedy Charlie LakinDavid MankDeborah Mclean Clint Perrin Barb RobertsJoseph ShapiroCathy Ficker-Terrill Addltiand Invlied Speakers Include: Quincy Abbot Ruthie BeckwithJudith NeumannBrian Salisbury Michael SmullMadeleine WillBob Williams Robert Wood Johnson State Project Staff and Advocates Look for sessions on these topics: TENTATIVE AGENDA + Self-Advocacy as a Political Force 4.Self-Determination: The International Perspective JULY 9, 1998 + Where the Rubber Hits the Road: 30 States /100 Communi- Pre-Conference Meeting for Robert Wood Johnson State ties Have Started Their Engines Project Directors and other Invited Guests The Tennessee Waltz: Self-Advocates Establishing Self- 8:00 - 4:00 Self-Determination Project Directors Meeting Determination as Public Policy 5:00 - 7:00 Welcome Reception for Transportation: Using Medicaid to Get from Here to There all Conference Participants Revolution in Employment Through Individual Budgets The New Medicaid July 10, 1998 HR 2020: Community Services Attendant Act (MiCASA)
8:00-5:00 General Session and Breakouts . The Waiting List: Still Waiting 6:00-9:00 Dinner Session, with C.Everett Koop, MD as the Culturally Specific Opportunities featured keynote speaker Whose Quality is it Anyway? The Role of the Arc July 11, 1998 Substitute Decision Making 8:00-4:00 General Session Transition to Adult Life Breakout Sessions and Table Top Exhibits Communitations and much more!!!
Hold these dates and start making plans! If you would like to receive registration materials, please call 1-800-482-TASH (8274) PAGE 29 5 TASH Newsletter, March 1998 MARCH 1998
Report on Closure of Johnston DD Center Issued
The New Jersey Institute of Technology (Center for Architecture and Building Science Research) in Newark, New Jersey has issued a report on the life effects of closure of the Johnston Developmental Disabilities Center. The report, titled, "Life After Johnston: Impacts on Consumer Competencies, Behaviors, and Quality of Life," is available from the Institute. The report details the lives of 225 adults who left the Center upon closure in 1992. The study was conducted at the request of the NJ State Division of Developmental Disabilities.
For more information or to obtain a copy of the report, contact Dr. Paul Lerman at [email protected]
HELP! NATIONAL HOME Our 1977 OF JASH YOUR OWN ALLIANCE Journalsare Announces its National Conference Missing! "Home Ownership: A Dream, A Challenge, A Reality" Have you been a member since TASH began producing the JASH Journal? If you have JASH issues dating back to April 26th29th, 1998 1977, we are in need of the first two Hyatt RegencyBethesda, Maryland issues published (Volume 1, Nos. 1 and 2) to complete the central office archives. For additional information, If you have the first two JASHs in call National Home of Your Own Alliance your private collection, we'd like to at 1-800-220-8770 receive copies. Please contact Nancy or to register, contact Independence Now Weiss at 410-828-8274, ext. 101 or at 301-587-4164 e-mail [email protected] you have access to these issues.
BEST COPY AVAILABLE PAGE 30 9 6 TASH Newsleffer, March 1998 POSITIONS OPEN
The Department of Special Education at the University of Maryland at College Park is recruit- The University of Washington ing teachers for enrollment in a Master's training Graduate Program program in Secondary Special Education and Transition for Students with Severe Disabilities. trains teachers to serve the Tuition fellowships of 3-6 credits per session are needs of pupils with significant available to part time students and graduate disabilities. Emphasis on data- assistantships are available to qualified full time based, systematic instruction students on a competitive basis. referenced to the requirements To obtain an application and information of natural school and commu- packet, please leave a message with your name, nity settings. M.Ed. degree plus address, and telephone number with Meg Grigal, Transition Project Coordinator, Department of initial teacher certification pos- Special Education, University of Maryland, sible. Dr. Felix Billingsley, Area College Park, Maryland 20742 at 301-405-6498 of Special Education, 102 Miller or e-mail a request to: [email protected] Hall, Box 353600, University of For information on line go to: Washington, Seattle, WA http://www.inform.umd.edu/EdRes/Colleges/ 98195, (206) 543-1827, e-mail EDUCLWWW/Depts/EDSP/.programs/grad- masters.html [email protected]
Special Education Service Agency ANCHORAGE, ALASKA The Special Education Service Agency currently has two va- with moderate/significant disabilities and extensive course work cancies for an Education Specialist in the following areas.For in orthopedic and other health conditions; minimum of three years more information about our organization, contact our website at recent experience working with learner with orthopedic and other http://www.sesa.org. health conditions; Education Specialist Autism Spectrum Disorders: MMi- Experience Needed: (1) Developing augmentative commu- mum Qualifications: Master's degree in education with emphasis nication systems; (2) current teaching knowledge using assistive on learners with autism spectrum disorders or Master's degree in technology; (3) ability to work collaboratively and independently; education with emphasis on the learner with moderate/signifi- (4) qualify for Alaska DOE Special Education Type A Certifica- cant disabilities and extensive course work on autism; minimum tion. Excellent health, ability to travel extensively and indepen- of three years recent experience working with learners with au- dently in rural/remote Alaska. tism spectrum disorders. Preferred Experience: (1) Working with preschool through high Experience Needed: (1) developing communication-based sup- school age ranges; (2) working across student ability levels; (3) ex- port strategies; (2) teaching social interaction and play skills; (3) perience and/or training with students who are medically fragile; developing programs to enhance communication skills; (4) current (4) experienced and/or training in traumatic brain injury; (5) train- knowledge of assistive technology; (5) knowledge of current re- ing professional and/or para-professional educators; (6) inter-agency search and range of educational practices in the field of autism; (6) networking and collaboration. qualify for Alaska DOE Special Education Type A Certification. Ex- For more information about employment or to submit a re- cellent health; ability to travel extensively and independently in rural/ sume and letter of inquiry, please contact: remote Alaska; ability to work collaboratively and independently. Ron Jones, Program Administrator Education SpecialistOrthopedic/Other Health Condi- Special Education Service Agency tions: Minimum Qualifications: Master's degree in education with 2217 E. Tudor Road, Suite 1, Anchorage, AK 99507 emphasis on learners with orthopedic and other health condi- 907-562-7372Fax: 907-562-0545 tions or Master's degree in education with emphasis on the learner e-mail: rj ones@sesa . org
PAGE 31 TASH Newsletter, March 1998 TASH NEWSLETTER
Priscilla Newton, Editor Policy Statement Executive Board It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive D rector judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION I Referred by: Name: Address. City/State/Zip.
Telephone: ( ) Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ E work addressEi home address college/library/school $200. E other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant ( ) Administrator/Adult Services (for whom payment of full fee would present a hardship) $45. () Administrator/Eduction Family (group rate) $136. () Administrator/Other Lifetime Member $1000. () Adult Service Provider/Staff All dues are $15 higher for members outside the () Behavior Specialist U.S. & Canada. Funds must be submitted in () Case Manager U.S. Dollars. () Early Childhood Services If you would like to charge your membership, please fill in the necessary information: () Educator/Teacher () Mastercard () Visa () Discover () Gov. Personnel (Federal, State, Local) Card Number () Higher Education () Interested Individual/Advocate/Friend Expiration Date () Legal Services Provider Signature () Occupational/Physical Therapist () I would like to arrange to spread my () Parent/Family Member payments out. () Personal Assistant Enclose 1/3 and you will receive 2 additional invoices at monthly intervals. () Professional Public Policy Advocate How did you learn of TASH: () Psychologist () Regular Education Teacher/ What, in particular, inspired you to join: Administrator () Related Services Provider What other disability organization do you belong () Self-Advocate to: If you are applying for a student membership, () Social Worker please provide the following information: () Speech/Language Pathologist Department () Special Education Teacher/Support Specialist College/University () Staff Development/Trainer Student I.D. Number ) Student (College/University) Anticipated year of completion ( ) Add $15 if you would like to become a mem- () Supported Employment/Day Personnel ber of your local TASH Chapter. () Other Please make check payable to: TASH MOVING? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706
BEST COPY AVAILAFILF ' [\ \ II, 1 1 II, L.
I
DATED MATERIAL: 2nd Annual Conference On Self-Determination Registration Form ALSO INSIDE: Inside! Therapeutic Recreation in the Schools, A Parents' Guide to Quality Inclusive Recreation Activities, and Recreation Human Services Partnerships APRIL 1998
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BY CANDACE COLE-MCCREA c.m«[email protected]
I remember, as a child, wondering why anyone would send us away, won- dering why we were not "good" enough to stay home in families like other children. I know I tried very hard to figure out what "good enough" and "smart enough" were, so maybe I could be that. I never understood what I did when I was home to get sent away again. None of the other kids I knew understood, either. First, I thought it was me. Then I hated them "the parents."That hatred changed when I was eleven years old. When I was eleven, I was again hospitalized for almost a year. During that time, a little baby girl was brought in and placed in the bed next to mine. Looking back now, she was around 8 or 9 months old, as near as I can guess. She was put in the bed next to mine because, they said, she was like me (what- ever that means). Anyway, every couple of days her parents would visit, and I would sit there and watch them cry over their baby girl, then watch the "white coats" talk them into leaving, then watch the little girl cry for her mother. All of this I had lived through myself, but until then I never saw another person or family live through it in the exact same way.I remember sitting there all day and all night for a couple of days, not eating, just thinking. Then I realized that these people, the "white coats" and the parents, were each trying to do the best they knew how and that they Fila no real idea of what happened to those of us who were "put away" They really thought it was the best thing, and that maybe that was all they could do. I saw the sadness in the parents and the ignorance in the "white coats." It was then that my life changed, though it would be another 25 or so years before it changed physically and socially This little girl, labeled as se- verely handicapped, who was not able to walk, who was seen as quite retarded, who was told she would spend the rest of her life in institutions and who was being considered for sterilization, decided I decided I would somehow grow up and tell them, the parents and the "white coats."I would survive. More than that, I would live, I would get free somehow. I would learn, I would do whatever was necessary to become whatever I had to. Then the time would come and I would speak and write and I would tell them. Luckily, thankfully, many others, people like all of you, have taken up this calling as well, and I find that I do not stand alone. 74aa4po a& pit peer etien4
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PAGE 2 0 0 TASH Newsletter, April 1998 APRIL 1998
State of Washington Turns the Clock Back on Deinstitutionalization Efforts
BY MARY ROMER, LYLE ROMER AND SUSIE SCHAEFER How can you lend your More than twenty years ago, Burton community or in an institution?" This offer is support? Blatt (Blatt, Ozolins & McNally, made with the assumption that it is a viable Send a letter to your state and federal 1979) said, "We need to empty choice between equal alternatives. This representatives, along with a copy to the institutions. The quicker we accom- ignores, of course, the voluminous evidence the Governor of Washington, de- plish that goal the quicker we will be able supporting community services as affording nouncing this action and demanding to repair the damage done to generations of greater growth in independence, adaptive that public policy across the nation not innocent inmates." To this day, most states behaviors, social relationships and the duplicate this travesty by slowing across the country are still engaged in dignity of living in social equality with one's down or ceasing deinstitutionalization efforts to accomplish that goal. Braddock et. fellow citizens and community members. efforts that are taking place across the al (1998) report that from 1980 to 1996 the Offering people the choice to live in isolation country number of people with developmental from our communities harms not only those disabilities living in state-operated institu- individuals, but also our communities. Contact the Congressional Switch- tions fell by 60.2% While the overall rate Does a just and caring society promote board at 202-225-3121 to obtain the of decline has slowed somewhat during the and support social policy that is clearly address and telephone number for 4-year period for 1992-1996, it was still at harmful and devaluing to its members? your Senate and Congressional 23%. Thirty-six states have closed, or have Sadly, sometimes the answer is yes. Witness representatives. The Governor of scheduled for closure, 114 state-operated the long-standing struggles with the tobacco Washington, Gary Locke, can be institutions by the year 2000. Unfortu- industry and the debate over gun control. reached via e-mail at nately, not all states are following this trend. Many people would like to see publicity- [email protected]; With extreme sadness we report that funded vouchers used to purchase educa- by phone at 360-753-6780; or mail: Washington State is one that will, in all tional services for children in private schools. PO. Box 40002, Olympia, WA 98502- likelihood in the foreseeable future, no We constantly struggle with what choices 0002; longer be contributing to the overall public policy should support and what it reduction of people with disabilities living should not. Simply offering choice, without Send letters to your local media to in institutions. Just last month, Governor regard to the consequences of the choices, is counter or offer a different side to the Gary Locke signed into law Senate Bill avoiding the real issue. A thoughtful, just issue and to inform the public that 6751. By law, Washington State... and caring society attempts to arrive at a there are alternative opinions. supports the existence of a complete decision about whether specific choices If you want to send a copy of your spectrum of options, including community deemed to be harmful ought to be supported letter to the newspapers in Seattle and support services and residential habilitation through public policy The propriety of Tacoma, here are e-mail addresses for centers" (institutions).The law guarantees public policy that supports the segregation the Seattle Times: that until the year 2003, the state institu- and exclusion of people with disabilities [email protected] and the Tacoma tions shall not be reduced below the 1997 under the rubric of choice is what this News Tribune: [email protected] capacity (approximately 1,250 people), debate should be all about. unless required to do so by the Department We thought we learned, over 40 years Join us December 3-5, 1998 at the of Justice or the governor's budget. ago, that separate is inherently unequal. TASH Annual Conference where Accompanying this new law is a The actions recently taken in Washington strands and workshops on self- $2 million appropriation that will be used State should serve to remind us that the advocacy, freedom of choice/self- to offer people not currently receiving struggle for disability rights and equality is determination, political/legislative residential support the choice to receive far from over. As we write this piece there action planning, deinstitution- their services from community support hangs on the wall in front of us a quote alization, and hundreds of other topics services or residential habilitation centers. from Dante, "The hottest places in hell are relating to community living, inclu- Only those individuals found to require the reserved for those who, in times of great sion, disability rights and advocacy funding level of support offered by moral crisis, maintain their neutrality" will be discussed. Look for details at residential habilitation centers will be TASH has never been an organization TASH's web site at www.tash.org offered them as a choice for their services. interested in maintaining its neutrality, yet Once the $2 million appropriation is many in Washington State seem willing to exhausted, choices between community do so on this issue. The Northwest is The authors are long-time members of TASH and institutional services will cease. known for its spectacular beauty and the and supporters of self-determination and Presumably, at that point, people may only "niceness" of its citizenry We are deeply freedom of choice for ALL people. choose the community or the institution, concerned that this desire to not give wherever a "vacancy" exists. offense will preclude a much-needed fierce Reference It is interesting to note that many public debate about our State's public D. Braddock, R. Hemp, S. Parish and J. people have hailed this law as a great step policies that support institutions as viable Wetrich (1998). State of the States in forward because it allows families, guard- places for some people with disabilities. Developmental Disabilities, 5th Edition, ians and individuals the chance to make the We need your support. Please continue to Washington, D.C. AAMR. choice themselves. "Shall I live in the stand up and join with us in our struggles. /Is
PAGE 31 0 TASH Newsletter, April 1998 FROM THE EXECUTIVE DIRECTOR
TABLE OF CONTENTS forging new lives for themselves in their own homes and apartments. It was my STATE OF WASHINGTON TURNS role to support the staff who supported this THE CLOCK BACK ON fairly exciting group of individuals and the DEINSTITUTIONAL1ZATION EFFORTS PAGE 3 tough questions sometimes seemed THERAPEUTIC RECREATION SERVICES PAGE 6 endless. Staff wanted to give people free
TEACHING STUDENTS TO PLAY PAGE 10 reign to make choices, but often those choices were detrimental to the point of SABE SUPPORTS HR 2020 (MiCASA) PAGE 13 beinglifethreatening. Together with the people we supported, we struggled with INCLUSIVE RECREATION: decisions for which there seemed to be no A PARENTS' GUIDE TO QUALITY PAGE 18 From the Executive Director BY NANCY WEISS right answer. We invited Herb to spend a SELECTING A SUMMER CAMP PAGE 21 few days with us and some of the people RECREATION AS A RELATED SERVICE PAGE 24 TASH has lost a long-time friend we supported and tohelp usall look at
THE RURAL RECREATION and a stalwart champion of the situations with fresh insight. INTEGRATION PROJECT PAGE 25 rights and humanity of people with If Herb was famous for anything, it
SECOND ANNUAL INTERNATIONAL CONFERENCE disabilities. On Saturday, March 21", Herb was fresh insight! By the end of our first ON SELF-DETERM1NATION PAGE 28 Lovett was killed in a car accident.I first visit with Herb we all felt much better.It's met Herb about ten years ago when I was OK, he assured us, not to let people working for an agency that provided destroy themselves. It's OK to offer to TASH (formerly The Association for Per- supports to adults with developmental remove yourself from someone's life if the sons with Severe Handicaps) is an inter- disabilities, who had been discharged from kind of support you can offer seems to not national advocacy association of people state psychiatric hospitals, and were be what he/she wants or needs. He also with disabilities, their family members, other advocates and people who work Continued on page 5 in the disability field. TASH actively pro- All' motes the full inclusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- Whom Do I Contact?? enue, Ste. 210, Baltimore, MD 21204 or phone (410)828-8274, ext. 105 or For issues of policy, chapter or committee support, or general e-mail: [email protected]. concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828- TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops, or technical assistance, MISSION STATEMENT call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828- TASH, Ext. 103, e-mail:[email protected] For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, Con- fAsTASINI ference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Stretching the boundaries of what is possible For questions about membership, conference registration or exhibiting call: Rose Building communities in which no one is Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] segregated and everyone belongs; For information on government affairs or fundraising/development, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, e- Forging new alliances that embrace diversity; mail:[email protected]
Advocating for oppo- rtunities and rights; For information on marketing and promotions, permission and reprints, news- letter submissions or advertising, or publication sales, call: Priscilla Newton, Eradicating injustices and inequ ties; Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, e- mail:[email protected] Supporting research and disseminating For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, at (415) knowledge and information; 338-6230, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting [progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promotingexcellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 4 102 TASH Newsletter, April 1998 FROM THE EXECUTIVE DIRECTOR
Continued on page 4 called us on a few points. He understood that everyone had chosen their own Herb Lovett homes, apartments, furniture, roommates BY JAN NISBET and jobsbut could it be, he questioned, that everyone had chosen to live in fairly Herb Lovett, Ph.D. of Boston, a revered leader, scholar, teacher, and safe-looking neighborhoods, in boring advocate for people with disabilities and their families, and a friend to many. garden apartments? All of us, including died in an automobile accident on Saturday, March 21st. He was 48. His death the people we supported who had spent has brought an outpouring of grief and condolences from around the world. time with Herb, learned to view the world Born in Boston, Dr. Lovett attended Bowdoin College where he studied somewhat differently through his eyes. classics, Yale University where he studied music theory Harvard University Herb had a wry wit. One evening we where he studied education, and the University of Rhode Island where he were walking through an "interesting" received a Ph.D. in Clinical Psychology. He worked to promote inclusive section of Baltimore when we were supports in and equal access to education, work, housing, and human rights approached by a panhandler. "Can you for children and adults with disabilities. He was the co-founder and past spare sixty-eight cents?" the panhandler president of the Autism National Committee, was a faculty member at the asked. "Why sixty-eight cents?" we University of New Hampshire, and traveled throughout the United States and queried. "Oh, it seems to get people's attention" was the response. Herb dug in the world as a consultant who helped to bring about fundamental changes in his pocket and carefully counted out sixty- the way that people with behavioral difficulties are viewed and treated. In the eight cents which the panhandler accepted U.S. he worked with national and state leaders to develop new public policy with thanks. As he was walking off, Herb legislation, regulation, and practice that outlawed the use of aversive proce- called after him, "Don't go spending it on dures in favor of respectful, decent, and positive supports. He served on the food, now!" Joint Commission on International Aspects of Mental Retardation of the World Shortly after leaving the agency at Health Organization since 1991; was an Advisor to People First of Ontario; which I had worked for many years, I got a and worked with other self-advocates and family groups around the world. call from Herb. He knew my values had One of Herb's greatest contributions was to listen, give encouragement and never been a good fit at my previous job recognition to others. He was a lovely blend of intellect and heart, and had the and that I had left because I was tired of unique gift of being a friend and colleague to many people. swimming against the current in an Dr. Lovett waged an intensive battle against the Behavioral Research environment in which real change was Institute (BRI), now the Judge Rotenberg Center, to stop the use of punish- unlikely Herb said, "The Executive ment and aversive procedures with people who had autism and people with Director's job at TASH has just become difficult behaviors. His two books entitled Cognitive Counseling and Persons with available. You're available.I can't think of a Special Needs (1985), and Learning to Listen: Positive Approaches and People with better match." I credit Herb with setting Difficult Behavior (1996) are best sellers and instrumental in the creation of an my sights in this direction, a move I'm not international movement that advocates for use of positive behavioral supports. sure I would have made without his Eis courage and unwillingness to yield to relentless political pressure on these untiring cheering-on. important topics will continue to inspire his colleagues in the field of disability Herb fought tirelessly to abolish the rights. use of aversives and was a comrade to me Herb was also a musician, a writer, and community activist. He lived in in that battle over the years. He was a loyal South Boston where he opened his and Michael's homea place filled with e-mail correspondent, frequently telling me music,.great books, and his three dogsto friends, family, and people who that e-mail was invented for hermits like needed a place to stay He is survived by artist Michael Dowling, his partner of him. 20 years; his godsons John Arico, Joe Feinman, and Matthew Goreham; his We are dedicating an upcoming issue nieces Ruth Lovett, and Sarah, Rachel, and Rebecca Goreham; his nephew, of the Newsletter to Herb and invite any of Bruce Lovett; his sister Ruth Arico of Sangus; his brother Bruce Lovett of you to submit your stories, tributes or Sabattus, Maine; his parents Ruth and Herb Lovett of Leeds, Maine; the memories of him. extended Dowling family; and thousands of friends and colleagues who For a hermit, Herb was loved by a big already feel a terrible sense of loss. Herbert Lovett was a kind and wonderful circle of people. He has left the world a bet- person who will be remembered for his humanity generosity, humility and ter place. Along with his partner, family, and wicked humor. friends we at TASH will miss him.
PAGE 5 1 0 fa TASH Newsletter, April 1998 THERAPEUTIC RECREATION SERVICES
An Individualized Person-Centered Approach to THERAPEUTIC RECREATION SERVICES
BY ROBERT E. CIPRIANO, ED.D. the diversity of humankind. They have the same variety of needs, wants, desires, The sophistication of therapeutic expectations, and abilities as other recreation service delivery is people. The only course to full accessi- Individuals with disabilities... constantly expanding. A person- bility is programming by abilities rather centered approach draws on an individu- have the same variety of needs, than disabilities and then attending to alized system of planning in which an wants, desires, expectations, and whatever barriers may stand in the way of individual is supported by same-age including any potential participant who peers, family members, significant others, abilities as other people. has those abilities. Individuals with and support personnel to design and The only course to full accessibility is disabilities should be taught to assess provide a wealth of recreative opportuni- their abilities, gain access to recreation programming by abilities rather than ties and experiences. Therapeutic programs where they live, work and play, recreation can be the synergistic agent to disabilities, and then attending to and obtain the myriad benefits of a connect an individual with a disability to person-centered recreation program. whatever barriers may stand in the his/her community. When one conceptualizes the term The person-centered strategies that way of including any potential therapeutic recreation and superimposes are employed focus on: participant who has those abilities. both the historical perspective of this gathering relevant and meaningful term, as well as the generic term "recre- information that addresses strengths, ation," it becomes clear that a new capacities, interests and experiences interpretation is needed. All individuals of individuals; wish to be in control of their destiny. developing a vision of what a This new focus on self-determination is desirable and fulfilling leisure future collective problematic concerns of becoming the engine that fuels the looks like; and individuals with disabilities. In such a rehabilitation train as we move forward implementing a series of actions, comprehensive process, the community into the 21st Century. which are coordinated and sup- recreation agency becomes responsible Recreation, with its dominant themes ported by persons who have a vested for developing a flexible service delivery of freedom of choice, individual satisfac- model that facilitates and responds to the interest in, and a commitment to, the tion, intrinsic motivation, voluntary individual planning process. individual with a disability. participation, and self-reward, should be A developmental and sequential five thought of in new and more encompass- step person-centered therapeutic recre- The person-centered process requires ing terms. Recreation services for ation model is presented. This model is careful planning, active involvement in individuals with disabilities can play a superimposed upon generic characteris- chronologically age appropriate experi- major role in enhancing their quality of tics and key elements of person-centered ences conducted in generic community life.It appears that therapeutic recreation services. based resources, and can best be achieved personnel will be called upon to modify Individuals with disabilities have the by a cooperative interagency approach. their roles in order to meet the diverse right to be accepted and served in the A major outcome of the person-centered needs of individuals with disabilities. same way as individuals without disabili- planning process is the formulation of individual support plans to address ties. They have a right to be included in Continued on page 7 PAGE 6 1 0 TASH Newsletter, April 1998 THERAPEUTIC RECREATION SERVICES
Therapeutic Recreation enhance the leisure skill levels of indi- Services viduals with disabilities. Continued from page 6 Step 4: Implement Making programs accessible to Traditionally therapeutic recreation Actually participate in the activity specialists served as providers of a variety people with disabilities has both Physically go with the participant to the of recreation activities that they planned social and practical benefits. activity Assist with instruction and adapt and implemented for individuals with the activity to meet the participant's needs, disabilities.It is logical to assume that It encourages the integration of if necessary, allowing the individual to par- in the not-so-distant future, therapeutic people with disabilities into the ticipate as independently as possible. recreation specialists will be enablers and facilitators rather than leaders and mainstream of society It also may Step. 5: Evaluate programmers. They will be knowledge- reduce the need for dedicating Evaluations should be both formative able concerning the myriad human and and summative. Evaluate subjective and facility resources available in the resources to special, segregated objective data obtained from the focus community where individuals with programs, and can increase individual and his/her significant others. disabilities live, work and recreate. Personal, as well as program goals, They will facilitate the active participa- participation in regular programs should be evaluated. Evaluation is an on- tion of people with disabilities by without additional expenses. going process that helps to ensure identifying key people to work with productive, appropriate and meaningful each individual to enable that person experiences for the participant.It is a (i.e., the focus individual) to utilize the systematic process of objectively docu- generic recreation resources distinct and menting the results and outcomes of the unique to each local community focus individual's experience. Evaluation Following is a succinct explanation Step 2: Explore allows for revisions and improvements to of the five steps the author has success- The activities the individual has be made regarding the individual's fully followed in realizing a community- expressed an interest in pursuing in Step experience. based person-centered recreation 1 are researched. The individual is Making programs accessible to program for individuals with disabilities. included in each phase of this explora- people with disabilities has both social The five steps that follow emphasize the tion. For example, the activities are and practical benefits. It encourages the interaction of individuals with disabilities explored according to their locations, integration of people with disabilities into and their non-disabled peers in natural their age appropriateness, the coopera- the mainstream of society It also may environments of everyday living. tion of the staff, the accessibility of the reduce the need for dedicating resources facility and integration. to special, segregated programs, and can Step 1: Assess increase participation in regular programs The assessment process is a system- Step 3: Plan without additional expenses. atic, thorough procedure for gathering The process inherent within person- However, the primary reason for specific information regarding the focus centered planning is comprised of a making recreation programs fully acces- individual. This procedure is the basis number of critical components designed sible is the basic right of all people to be for the Person-Centered Planning to assure that individuals with disabilities judged according to their capabilities, not Approach. A variety of leisure interest are integrated socially, as well as physi- their disabilities; their right to be included surveys have been developed by the cally, into the mainstream of society. in all aspects of public life; their right to therapeutic recreation discipline. The Thus, meaningful participation in leisure have fun like everybody else. After all, in intent of completing a leisure interest settings demand that attention be paid to the final analysis, isn't this what a recre- survey with the individual is to ascertain various barriers that may prevent the ation experience is really all about? accurately previous recreation experi- inclusion of persons with disabilities into ences participated in by the person, to community-based programs. Attitudes of If you are interested in receiving a copy of determine barriers to leisure participa- other staff and participants, age appropri- the "Person-Centered Planning" materi- tion, to obtain a list of significant others, ateness, modifications needed, transpor- als, please write to the author at South- to establish support, etc. This phase tation, lack of personnel, building/facility ern Connecticut State University, 501 identifies the focus individual's recreation accessibility, contact person and direc- Crescent Street, New Haven, CT 06515. needs and interests based upon his or her tions must be considered thoroughly and choices. in conjunction with efforts designed to PAGE 7 0 5 TASH Newsletter, April 1998 1998 ANNUAL TASH CONFERENCE
1998 Annual TASH Conference "Creating Futures Together" December 2, 1998 - Pre-conference Activities and Opening Reception December 3-5, 1998 TASH Annual Conference Conference Update
The proposals to present at the 1998 TASH Conference are pouring in! We are pleased to announce that TASH has a new staff person to help coordinate the TASH Annual Conference. Overall direction of the conference planning will still be under Denise Marshall. Please join us in welcoming Kelly Nelson, who will be working with Denise to coordinate the processing, review, and scheduling of the conference proposals and sessions.If you have any questions about a proposal submitted, please contact Kelly at 410-828-8274 x105 or [email protected]. If you missed the deadline to submit a proposal to present at the 1998 TASH Conference, you may still submit an application, however, acceptance will be based on available space and upon the ability to have the proposal reviewed by the appropriate review committee. Local Planning Committee Meets in Seattle
On March 23, 1998, TASH staff traveled to Seattle to meet with local TASH members and others in the Seattle community to begin to plan for the conference. Thanks to the efforts of Mary Romer and Susie Schaefer, we are ecstatic to report that over 45 people were in attendance at the meeting. Attendees brainstormed ways in which they could help with the conference planning, and sub- committees were formed to work on such areas as: Publicity and Promotion; Recruiting Diverse and Multicultural participation in the conference; Providing information on the local area and accessibility; Day Care/Club TASH; Washington Local Issues; and Recruit- ment and Participation of Local Educators. The group also brainstormed ways in which the presence of the TASH Conference in Seattle could help the local committee. This is a partial list of what they hope to achieve:
Focus on Community Living and bring in a national Provide latest information on the implementation of IDEA perspective on the issue, as well as targeted sessions by Tie the emphasis on Creative and Performing Art for the speakers of a national stature in light of the recent legislation conference to the exhibit of art which is in the Washington that has been passed which in essence "reopens the doors of State Convention Center for the month of December institutions in Washington" Have a poetry writing group as part of the conference, and Generate enthusiasm, support and collective action for full incorporate local writers or performers. inclusion Have a strand on Employment that will provide practical Hold an action during the conference which promotes information for people with disabilities to get jobs community living and best practice Focus on housing issues Gain media coverage and education on models for commu- Focus on variety of issues in the community, such as faith nity living and community building communities, coalition-building and non-traditional supports Focus specifically on secondary education and education re- Promote family attendance through channeling of funds to form, since inclusion in secondary schools is an area concern attend the National TASH Conference. The TASH Conference Committee will be working with the local committee and the TASH Interest and Action Groups to build a conference agenda that supports local, national, and international agendas. Check out the next issue of the Newsletter for specific information on keynotes, TASH Tech pre-conference workshops, strands, and potential topics to be seen at the 1998 TASH Confer- ence. 1998 TASH Conference Exhibit Hall Information
The application to participate as a vendor in the 1998 TASH Exhibit Hall is available! The exhibit hall will be buzzing with activity. This is your chance to capture an audience interested in the innovative services, products, and information available to assist people with disabilities. Join us in Seattle December 35, 1998. For more information or to obtain an Exhibitor Application, contact Rose Holsey, at 410-828-8274 ext. 100; e-mail:[email protected]. 106 PAGE 8 TASH Newsletter, April 1998 APRIL 1998
Para Educators TASH wishes to acknowledge Life Lines m the Classroom the generous support of our newest lifetime members Jackie H. Direen 1998 Trainer-of-Trainer Karen Moehn Sessions Lifetime membership entitles you to Build in-district resources to full international and chapter member benefits for your lifetime. The cost can be remitted over ensure on-going paraeducator several monthly payments. If you are interested in becoming a lifetime member of TASH, training by attending this contact Rose Holsey at 410-828-8274, ext. 100. 3-day workshop to become a OLifeLines trainer. _
TASH CHAPTER HEWS Offered by (.2.CoNiSuLriNIG: Dianna Williams Houston June 8-10 Announces State Las VegasSeptember 14-16 Senatorial Bid OrlandoSeptember 21-23 San Diego September 21-23 On behalf of the Board of IN-TASH, Michelle Persinger, Co-President of the SkokieOctober 5-6 Indiana Chapter of TASH announces ProvidenceOctober 26-28 that "one of our own" has declared her intention to run for the State Senate in Indiana. Dianna Williams, IN-TASH's For more details: other Co-President, will seek to represent District LeCONISULTiNIG 38 in the Indiana Senate. The IN-TASH Board is very proud of Dianna's P.O. Box 6049-747 decision to run and will, of course, support her Katy, Texas 77491-6049 campaign. Dianna is the parent of a young man Telephone 281-395-4978 with a disability, the Director of Assist, Inc., an employment service provider in Terre Haute, Fax 713-973-1271 Indiana and a tireless advocate for people with www.lrconsulting.com disabilities.
PAGE 9 1 c\u ar TASH Newsletter, April 1998 THERAPEUTIC RECREATION IN SCNOOLS
THERAPEUTIC RECREATION IN THE SCHOOLS:
TEACHING STUDENTS TO PLAY
BY LINDA A. HEYNE
Sarah watches a group of children playing on the playground, but is unsure about how to join in the group. Casey's parents wish their son could play by himself for more than five minutes so they can pay attention to their other children and tend to chores around nity recreation personnel have acknowl- rization of the Individuals with Disabili- the house. During lunch, Fatima usually edged that recreation skills similar to ties Act (IDEA). Similar to the related sits and eats alone, while her classmates academic and functional life skills require services of physical therapy, occupational are talking in groups among themselves. systematic instruction by students with therapy, or speech therapy, a student may Mariah is athletic and coordinated and disabilities or they will not be learned also receive therapeutic recreation wants to participate in her school's track (Bullock, Morris, Mahon, & Jones, 1992; services as part of his or her Individual- and field events. Cooper would like to Schleien, Meyer, Heyne, & Biel Brandt, ized Education Plan (IEP). IDEA work out at his neighborhood YMCA but 1995; Schleien, Ray, & Green, 1997). identifies four components of recreation needs someone to show him how to ride Despite an awareness of the impor- as a related service (Aldrich, Powell, & the bus and find his way around the tance of recreation instruction for Sable, 1995; Ashton-Schaeffer, 1997; building someone, that is, other than students with disabilities, few students Bullock et al., 1992). These components his mom or dad. These situations actually receive leisure education as part include: illustrate just a few of the challenges of their school program. Relatively few students with disabilities and their school personnel and parents are familiar 1 Assessment of Leisure families face related to recreation and with the discipline of therapeutic Functioning play recreation. Nor are they aware that A comprehensive assessment of the Most people agree that having time therapeutic recreation has been autho- student's leisure skills, attitudes, interests, to recreate and to use one's free time in rized as a related educational service in and abilities is conducted to assess meaningful ways is essential to a healthy, public schools. functional strengths. The assessment well-balanced life. Indeed, some people provides the basis for developing IEP believe that satisfaction with one's leisure Recreation as a Related Service goals and planning for subsequent participation equals one's overall satisfac- As early as 1975, with the passage of instruction. tion with life. Recreation has been the Education for All Handicapped recognized as an important curricular Children Act, recreation was identified as Continued on page 11 area for students with disabilities for over a related educational service. This service two decades. And school and commu- was reaffirmed in 1997 with the reautho- 108 PAGE 10 TASH Newsletter, April 1998 THERAPEUTIC RECREATION IN SCHOOLS
Teaching Students To Play Continued from page 10 2. Leisure Education Leisure education builds student awareness of leisure patterns, interests, preferences, opportunities, and resources. Leisure education in the form of system- atic instruction enhances recreation skill Ai development, develops choice-making skills, and promotes participation in recreation activities across home, school, and neighborhood settings.
3. Therapeutic Recreation Service Therapeutic recreation service is designed to enhance the student's social, cognitive, emotional, and physical functioning and well-being. This process includes individualized assessment, development of goals and objectives, implementation, documenta- tion, and evaluation of student progress. This service also includes such activities as environmental analysis and modifying equipment or procedures to maximize participation. 4. Recreation Programs in Increased social interaction and develop other important complementary Schools and Community friendship skills such as greeting life skills through leisure education. For Agencies others, making conversation, example, as students learn to access IDEA supports the inclusion of listening to others, giving feedback, community resources, mobility and students with disabilities in extra- and taking turns; transportation skills can be developed. curricular school activities, neighborhood As students interact with others at local leisure offerings, and year-round recre- Greater feelings of belonging and parks and recreation settings, communi- ational activities. This component is acceptance in school and neighbor- cation and interpersonal skills can be important for all students, and especially hood communities; practiced and encouraged. Making relevant for transition age students. purchases at stores, restaurants, and other Increased sense of autonomy, public businesses can strengthen a How Students Benefit from independence, self-direction, and the student's money management skills. Leisure Education ability to make choices as students Dressing in appropriate attire for such Children and youth with disabilities make decisions for themselves activities as playing tennis, working out, can experience tremendous growth and regarding their recreation participa- cross country skiing, or going to a dance learning through the provision of leisure tion and friendships; and can motivate the student to learn education at schools (Heyne & Schleien, grooming and dressing skills. 1996; Schleien et al., 1995). Some of the Expanded repertoire of leisure skills, potential benefits of recreation include: with the potential for lifelong Role of Certified Therapeutic Recre- participation across a variety of ation Specialists in Schools Enhanced self-esteem and self- settings and situations. IDEA has identified Certified confidence through the successful Therapeutic Recreation Specialists performance of recreation skills and In addition to developing specific activities; recreation and social skills, students can Continued on page 12 PAGE 11 103 TASH Newsletter, April 1998 THERAPEUTIC RECREATION IN SCHOOLS
Teaching Students To Play Including Recreation Goals on the IEP During lunch, Fatima will sit with her Continued from page 11 To ensure that the leisure and classmates and engage in conversation. recreation needs of students are met, it is (CTRS) as the qualified professionals to important that parents, school personnel, Mariah will train for track and field provide recreation as a related service. and CTRSs work together to develop events by participating in regular Certified by the National Council for recreation and social goals for the 1EP physical education classes and after- Therapeutic Recreation Certification, Recalling the scenarios described at the school athletic activities. CTRSs may either be employed as full- beginning of this article, here are some time or part-time staff by school districts examples of IEP goals: Cooper will ride the bus to the YMCA or hired on a contractual basis to perform with a friend once a week to lift weights a variety of functions related to leisure When Sarah wishes to join other and jog around the running track. education. Some of the roles that a CTRS children on the playground, she will could perform at a school include: greet them, interact with them With careful planning and collabora- appropriately, and actively engage in tion among families and professionals, Conduct a comprehensive assess- the activity students with disabilities can enjoy the ment of a student's recreation needs, many benefits of an active and gratifying interests, preferences, abilities, and When given three choices of a game leisure lifestyle through the provision of repertoire in preparation for the or toy, Casey will select an activity therapeutic recreation services. development of IEP goals and and play with it independently for objectives and the provision of 15 minutes. g+ therapeutic recreation services.
Provide training to parents and The author, Linda A. Heyne, Ph.D., CTRS, is a Research Associate with the classroom teachers about the role of Division of Recreation, Park, and Leisure Studies, Institute on Community Integration. recreation to enhance educational For further information on therapeutic recreation in the schools, contact Linda at 612- outcomes for students. 625-7816 or send her an e-mail to: [email protected] The development of this article was supported in part by the Research and Training Serve as a "leisure educator" or Center on Residential Services and Community Living through Cooperative Agreement "leisure coach" to provide direct H133B30072, funded by the National Institute on Disability and Rehabilitation instruction to students in leisure Research, U.S. Department of Education. awareness, social skills, and recre- ation skills. REFERENCES Identify recreation resources and therapeutic facilities in the community and assist Aldrich, L., Powell, L., & Sable, J. (1995, October). Comprehensive presented at the annual congress students in accessing them. recreation assessments within school settings. Paper of the National Recreation and Park Association, San Antonio, TX.
Collaborate with families, school Ashton-Shaeffer, C. (1996, May/June). The ART of Leisure. DisabilitySolutions, 1(1), staff, and community recreation 6-7. professionals to provide leisure education to students and encourage Bullock, C., Morris, L., Mahon, M., & Jones, B. (1992). School-communityleisure their participation in recreation link: Leisure education program curriculum guide. Chapel Hill, NC:The Center for activities across home, school, and Recreation and Disability Studies. neighborhood settings. Heyne, L., & Schleien, S. (1996).Leisure education in the schools: A call to action. One could locate a qualified CTRS to Journal of Leisurability, 23(3), 3-14. provide therapeutic recreation services by Schleien, S., Meyer, L., Heyne, L., & Biel Brandt, B. (1995).Lifelong leisure skills contacting local universities that train and lifestyles for persons with developmental disabilities. Baltimore:Paul H. students in therapeutic recreation, parks Brookes. and recreation departments, rehabilita- tion and psychiatric hospitals, or commu- Schleien, S., Ray, M., & Green, E (1997). Community recreationand people with nity recreation centers. disabilities: Strategies for inclusion (2nd ed.). Baltimore: Paul H.Brookes.
PAGE 12 TASH Newsletter, April 1998 MiCASA
Letter From SABE's Self Self-Advocacy Action Committee
Advocates Dear Presidents and Advisors of State Self-Advocacy Organizations,
We, the members of the Advocacy Action Committee of Self-Advocates Becoming Becoming Empowered, are writing to ask you to help us to support MiCASA, the Medicaid Community Attendant Services Act of 1997, H.R. 2020.
Empowered MiCASA is an important bill that was introduced by Newt Gingrich, Speaker of the House of Representatives. MiCASA would allow people with physical and mental disabilities, old and young, who are eligible for Nursing Home or Supports Intermediate Care Facilities for the Mentally Retarded (ICF/MR) to choose to use those funds for a service called Qualified Community-Based Attendant Services. MiCASA allows people to control how dollars are spent for their HA 2020 services. It allows people to continue to live in their own homes in their communities instead of institutions.
(MICASA) Self Advocates Becoming Empowered, SABE, supports an idea called self- determination. We are working to help all self-advocates have the freedom and choices to control their own lives. MiCASA is very consistent with self- BY LIZ OBERMAYER AND NANCY WARD determination. The number one goal of Self We have included a handout with this letter about MiCASA to help you Advocates Becoming Empowered, understand more about this important bill. Right now, MiCASA is being which is the national self- studied to find out how much it will cost. We hope it will be pushed forward advocacy organization, is to close all in the next legislative session. institutions across the country We believe that people with disabilities should and You can help in several ways: can live in the community. Sometimes parents and other people believe that we Write letters from your organization to the four Representatives listed on can't live in the community, but we know the attached page. You can call and/or fax them, too. this is not true. It has been proven that Share this information with local chapters, members and supporters of anybody, no matter what their disability, your organization and ask them to write letters. can live in the community with the right Go visit your state representatives and ask them to support and even co- supports. sponsor the bill. Because of this goal, we were asked Join together with other disability groups in your state such as ADAPT. by ADAPT (American Disabled for Attendant Programs Today) to work We believe that self-advocacy is part of a broad disability rights movement. together to get MiCASA HR 2020 MiCASA is a bill that benefits all people with disabilities. It will give many passed by Congress. Our goal is to close people a chance to control where they live. It helps people to continue living institutions and ADAPT's goal is to have in their community It will help free people who want to leave nursing homes enough community supports available and ICF/MRs. Please help us to support this important bill. Working together through attendant programs. MiCASA we can all really make a difference. made sense to us, partly because in Spanish, Mi Casa means "my home." Sincerely, We believe there is power in num- bers, and with numbers you can accom- Members of the Self-Advocacy Action Committee: plish more. This was the first time that Keira Williams, Connecticut; Robert Webb, Virginia; Cherie Tessier, Washington; self-advocates had been asked to support Joe Wrinkle, Missouri; and Liz Obermayer, Massachusetts Continued on page 14 PAGE 13 1 1 TASH Newsletter, April 1998 ...... AUCASA ......
SASE SUPPORTS SUCASA VOR is made up of parents whose sons summary of MiCASA (see page 15) so continued from page 13 and daughters are in institutions. They that the membership would be able to a national piece of legislation by an have been saying that they speak for us. make an informed decision on whether organization made up mostly of people We wanted Congress to know that we are they wanted to support it. with physical disabilities. We were very able to think and speak for ourselves, and Below is a sample letter you can use excited to be asked, because we felt that we are here to prove that. to show your support for HR 2020. they saw that we are a strong organiza- To work on this, our Advocacy Addresses for Speaker Gingrich and other tion. ADAPT and SABE are very Action Committee wrote a letter (see page key legislators are on page 15. concerned because Voice of the Retarded 13) that was sent to every state self- Continued on page 15 (VOR) has been opposing this legislation. advocacy organization. They also wrote a
SAMPLELETTER self- who youare to. thisletter toreflect writing it Note:Change and whoyou are advocate orsupporter
Gingrich, Dear Speaker institution, andpeople thought used to livein the state the help of alot of of us in ourgroup places, with (If thisapplies: Many Now welive in our own in thecommunity. have had.) we couldnot live the samechances we other peopleto have people. We want will workhard in this MiCASA. Wehope you disabili- of H.R.2020, the bill forpeople with for your support is a veryimportant Thank you passed. MiCASA and control our to get it chance to livein thecommunity nextlegislative session friends a nursing homesand of us and our disabilities areconfined in ties as itwill give many people with services. Toomany own support Care Facilities. Intermediate for thepeople who are not speakfor us or Retarded does samelives as that Voiceof the can't talk, wewant the We want youto know Even if we We speakfor ourselves. still ininstitutions. have, in thecommunity. and how other people freedom tochoose where a choiceand the people withdisabilities have Let's make sure their ownsupports. they live,and to control support. Thanks againfor your
Sincerely,
Your Name
112 PAGE 14 TASH Newsletter, April 1998 MiCASA
SABE SUPPORTS MiCASA continued from page 14
Key People to 1. Services described here MUST be pro- 8.The person may be the employer of Send Letters vided under Medicaid, just as nursing the attendant or may choose an and/or call or fax: home and other services must be. agency to pay the attendant. * * * 2.Services in MiCASA are attendant There are some other technical Speaker Gingrich services (one-on-one staff persons) provisions. Please contact ADAPT at provided in the home, as needed, by 1339 Lamar Sq. Dr. #101, Austin, TX Capital Bldg. H-232 an agency or hired by the person, 78704 if you want more information on Wash. DC 20515-6501 and are controlled by the person MiCASA. Their e-mail address is 202-225-0600 (and if the person wants it, by his/ [email protected]. Fax 202-225-7733 her representatives).
* * * 3.Services include back-up and ADAPT is also working with the Minority Leader emergency services, training on how self-advocacy movement by Richard Gephardt to hire, supervise, and fire atten- planning to hold a meeting dants, and any tasks that the person where groups across disabilities Capital Bldg. H-204 may need done (including health- will work together. We are still Wash. DC 20515-6537 related tasks that can be done by planning the meeting, so we 202-225-0100 unlicensed attendants). don't have all the details yet.It Fax 202-225-4085 will probably be in the central 4.If a person is eligible for a nursing region of the U.S. We are very * * * home or an ICF/MR (Intermediate excited to work together on this, Care Facility for the Mentally because we think that it is Commerce Chairperson Retarded), that person can choose important for everyone to have a Representative Tom Bliley instead to use MiCASA funding. The voice in the work that is done on 2409 Rayburn Bldg. money would follow the person and behalf of people with disabilities. Wash., DC 20515 would be used for the services the If something is going to affect us, 202-225-5755 person chooses. we should be there when it is Fax 202-225-1919 being planned. We need to be at 5. Services would be based on an the table. * * * assessment of functional need. This means that the person's needs and If you would like to work with Commerce Subcommittee ability to do things for him/herself us to pass MiCASA, please write Chairperson would be evaluated to see what to us at Self Advocates Becoming Representative Michael Bilirakis services are needed. Empowered, PO. Box 15162, Loves Park, IL 61132, or contact 2369 Rayburn Bldg 6.The money that would go for the nurs- ADAPT at 1339 Lamar Sq. Dr. Wash., DC 20515 ing home or ICF/MR would be avail- #101, Austin, TX 78704 if you 202-225-5755 able for the person in the community want more information on Fax 202-225-4085 (would "follow" the person). MiCASA. Their e-mail address is [email protected]. * * * 7.Services must be provided in the most integrated setting in the Your State Representative community, like in one's own home or family home. 113 CO PAGE 15 TASH Newsletter, April 1998 APRIL 1998 7( Yes, (Z She Knows ) She's Here
BY NICOLA SCHAEFER
Reviewed by Judith Snow The story of the policy and technical triumphs is important. So is the tale of Catherine's life in her own So what's so unusual about a young woman home. The recounting of the other family members' moving out and setting up her own household progress is intriguing. But the best part of Yes, She in the company of four or five friends? Why Knows She's Here is the way Catherine's voice sounds would her mother write a book about it? throughout. Catherine Schaefer is the subject of Nicola I have long admired the mystery of communica- Schaefer's first book, Does She Know She's There and tion that people who don't use words often ask us to now an update, Yes, She Knows She's Here. Catherine experience. Frequently we hear that "the nonverbal" has forged ahead in living her life ordinary yet in have a disabilityone that is to be ameliorated with many extraordinary ways. Catherine does not speak therapy and technology. Yes, Catherine tried all that! in conventional words, although she is articulate in What shines through this glorious book is the her own ways. She doesn't move her body much, manner in which Catherine has opened up the though she moves people and governments. minds, hearts and spirit of person after person. Catherine has intellectual impairments, yet her Through her attentive silence, her joyous laughter compassion and wisdom are legendary and gestures, and her deep appreciation of life lived Through this book we are treated to the in the moment in partnership with other people groundbreaking work that Catherine, her friends, and through simply being herselfCatherine has brought family have accomplished in buying an ordinary happiness, healing and opportunity to countless home and setting up a supportive household. In the others. late '90's, living in one's own home is still controver- Thank you, Catherine for being the amazing sial in the world of disability, particularly for an pioneer that you are! Thank you, Nicola, for being individual who doesn't speak in words and who the inspiring leader that you are! And thank you for participates with 24 hour a day support from others. letting Catherine reveal her wisdom and love through Catherine has been on this path for more than eleven your words. years. Along the way, she has garnered an ever- increasing crowd of close friends, admirers and well- wishers. "Cath" has opened the way for less feisty Yes, She Knows She's Here souls by doing what hadn't yet been done and by continuing to succeed at it in fine style in spite of is published by Inclusion Press. bureaucratic barriers, her own health challenges and A special introductory rate of plain old human failings. $15 (plus shipping and Nicola Schaefer is the mother of this daughter handling) is available to TASH who could easily be rejected by everyone, including her own family. Nicola's buoyant words describe a members. Place your order story of innovation and perseverance that led to her directly to Inclusion Press by daughter having a fulfilling life as a young woman phone (416-658-5363), fax interdependent and participating fully in her own (416-658-5067) or e-mail community Nicola's tale of the trials and the victories is fascinating and important. She teaches us ([email protected]) what it takes to turn an avalanche around.
PAGE 16 111.1 TASHNewsletter,April 1998 APRIL 1998
How-to Manual Do you market or manufacture an assistive device or product that The National Lekotek Center, would be of interest to our readers? a nationallyrecognized leader in making play and recreation Why not advertise it in TASH's activities accessible for children Assistive Technology Newsletter! with special needs, hasdeveloped Scheduled for early Fall '98 release, Re-Creating Recreation for Inclusion, a how-to manual this issue will present articles on the on achievingaccessible latest research and innovations in the recreational programming. assistive technology field. Be one of the first to reserve your space in this Contact the National Lekotek Center information and product-packed issue! for more information (phone) 847-328-0001; For rate information or to reserve space, (fax) 847-328-5514. You may also visit theirwebsite at call Priscilla Newton at icwww.lekotek.org> 410-828-8274, ext. 102
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I. MI PAGE 17 iiii. TASH Newsletter, April 1998 QUALITY INDICATORS
INCLUSIVE RECREATION: A Parents' Guide to Quality
BY STUART J. SCHLEIEN AND JOHN E. RYNDERS
How do we find community recreation program to fully including children with allow for adaptations for individuals with a programs that will make our child feel developmental disabilities in its recreation variety of needs? welcomed and really part of the activities, the following questions may be asked Are efforts made to keep costs related to group?" This is a question often asked by regarding administrative policies and practices: adaptations reasonable for the program and parents who have a child with a developmental the participants? disability We believe it is important for parents Do the agency's mission statement and Does scheduling reveal sensitivity to times to have a set of questions that they can ask to profile, as presented in brochures, advertis- and places that promote accessibility for judge the quality of a community recreation ing, and other public relations efforts, reflect persons with disabilities, including access to program and its ability to fully includeto a commitment to inclusion? public transportation? welcome, support, and involve young people Is documentation of previous and current Are procedures in place to keep key with and without disabilities. We have inclusive services available? Are program planners and players in continued commu- developed one such tool, basing it on our descriptions and evaluations written clearly nication with each other? experiences in inclusive recreation over the and do they reveal social inclusion? past 14 years. It is a list of questions that Are published policies and procedures in com- Quality Indicator #3: Techniques evaluate the characteristicswhat we call pliance with laws pertaining to serving per- and Methods quality indicatorsthat reveal the level of sons with disabilities in settings that are as Evaluation of the day-to-day operation of commitment to inclusion that exists in a inclusive and least restrictive as possible? the program and what actually happens during recreation program. Are budget commiments sufficient to support the activities can be guided by the following When evaluating a program's quality, inclusion efforts? Are funds available to ad- questions: we suggest that parents look at four general equately provide adaptations, one-to-one as- areas. First, parents should determine how sistance, and other supports for those partici- Does inclusive programming reflect proven committed the program administration is to pants with disabilities who need them? strategies and techniques for successful inclusion by asking administrators questions Are the opinions of parents, advocacy inclusion? (For more information on related to policies and staffing, and reviewing groups, consumer review boards, decision- strategies for successful inclusion - such as written materials. Second, parents can tour the makers, and other inclusion-oriented partial participation, companionship program and discuss, both with administrators persons solicited by the agency? Do they training, and task adaptationparents may and staff, logistical and environmental collaborate in inclusion planning efforts, want to refer to the book Community considerations in maintaining an inclusive using focus groups and other means to help Recreation and People with Disabilities: program. During such a tour parents can also develop and maintain the integrity of the Strategies for Inclusion (2nd Ed.), authored observe and ask questions about a third area, inclusive program? by S. Schleien, T. Ray, and R. Green and the techniques and methods used to support Are staff hired who have backgrounds published by Paul H. Brookes Publishing the inclusion of participants with disabilities reflecting individualized programming and Company 800-638-3775). within the program. And lastly, parents can experience in inclusion? Are there ongoing modifications of activities observe program activities to see if they address Are generalists and disability specialists and materials to accommodate needs of individual needs and preferences. For each of committed to the growth of each other's participants, and are the modifications these areas, there are specific indicators of participants? Do their collaborative efforts reduced or eliminated when no longer quality, and questions about their presence or clearly reflect this co-commitment? needed? absence will lead to an awareness of whether Are staff given supervision, opportunities for Does assessment of skills, experiences, and the fundamentals for inclusion are in place. continuing education, and feedback preferences of participants with disabilities The quality indicators, framed as regarding inclusive techniques and practices occur as part of the program? questions, can be asked not only by parents as part of regular program evaluation and Do program instructors structure program and care providers, but also by recreation staff support efforts? goals and tasks for cooperative participa- professionals in examining and planning tion? programs aimed at inclusion. The quality Quality Indicator #2: Logistical Is there an ongoing evaluation of program indicators provide a tool that can become a and Environmental Considerations quality? permanent part of a program's or organization's To examine the ways in which the Are staff well-trained in how to conduct the self-assessment process. As parents and program procedures, structure, and environ- program and given adequate preparation, professionals seek the same goalquality ment support inclusion, the following administrative support, and staff assistance? programs that include young people with and questions can be asked: Is there a "welcoming" orientation for without disabilities - these indicators can help participants and families as they are them work as partners in a process that benefits Are participants enrolled in programs that introduced to inclusive programs and everyone. are chronologically age-appropriate and that adaptive strategies? Are they invited to include participants with a range of abilities, participate in activities and activity Quality Indicator #1: including persons without disabilities? assessment and evaluation? Administrative Policy and Practice Do modifications for physical accessibility In evaluating the commitment of the Continued on page 19 PAGE 18 116TASH Newsletter, April 1998 QUALITY INDICATORS
A Parents' Guide To Quality make to their coummunity. Parents should Continued from page 18 not be shy about getting involved, realizing that the pressure generated by informed Stuart J. Schleien is Professor and Division parents and advocates not only gives the Head in Recreation, Park, and Leisure Studies, A child with special needs cannot system a "push" in an essential way, but and Senior Researcher with the Research and simply be "dumped" into a recreation supports officials of the system in fulfilling Training Center on Residential Services and Community Living, University of Minnesota, activity or program and experience success. their mission as service providers to the Minneapolis. He may be reached at 612-625- Many strategies must be used for a success- entire community. It is time for all of us to act 4073. John E. Rynders is Professor in the ful inclusive program. together in helping to make a true commit- Department of Educational Psychology, ment to all of the communities' citizens. It is University of Minnesota, and Senior Quality Indicator #4: time to welcome everyone in community Researcher with the Research and Training I AS Individualized Programming uecreation /Mb Center He may be reached at 612-624-5241. In assessing the degree to which the program is individualized to meet the unique needs of each participant, parents can ask the following questions: RESOURCES The following resources may be of use to parents and professionals in planning for inclusive recreation. Are the activities based on the needs and Please contact the distributors for information about costs and ordering materials. preferences of participants? Friendship and Community Connections Between By S. Schleien, L. Meyer, L. Heyne, and Brandt. A re- Are adaptations geared to the individual? People With and Without Developmental Disabili- source for parents, teachers, and recreation profession- Are they as simple as possible, designed to ties (1993). By A. Amado. A resource for supporting als to help people with disabilities learn essential life- increase independence within the activity, friendships and full community participation through long leisure skills.Provides guidelines for setting in- oriented toward enhancing mastery of the use of natural social connections. This book ex- structional objectives, selecting age-appropriate activi- plores various dimensions of friendship including work ties, promoting skill acquisition, adapting activities, en- recreation and social skills, and planned to and leisure relationships; gender-related expectations; couraging choice-making, collaborating with families, be slowly withdrawn when no longer community associations and groups; and the roles of and promoting community recreation participation. needed? love, affection, and intimacy Available from Paul H. Available from Paul H. Brookes Publishing Company, Do activities develop skills, leisure knowl- Brookes Publishing Company, Baltimore, Maryland - Baltimore, Maryland 800-638-3775. edge, attitudes, and an awareness of 800-638-3775. resources that may be used in other settings Community Recreation and People with Disabili- Making Friends: Using Recreation Activities to Pro- ties: Strategies for Inclusion (1996). by the participants? mote Friendship Between Children With and With- By S. Schleien, M. Ray, and R. Green. A step-by-step Are allowances made for personal challenge out Disabilities (1993). By L. Heyne, S. Schleien, and resource for ensuring the inclusion of people with dis- and dignity of risk? That is, does the child L. McAvoy A handbook that assists parents, commu- abilities in community recreation programs. Chapters have an opportunity to experience aspects nity recreation staff, and teachers to support friend- address creating inclusive environments; overcoming of an activity or program that may involve a ships between children with and without disabilities, barriers to inclusive recreation; building bridges between grades K-6. Discusses what friendships mean for chil- families and agency staff; assessing leisure interests, bit of risk or challengeeither physical, dren, barriers to friendship development, and strate- evaluating environments and accessibility; and design- cognitive or socialfor the child? gies for encouraging friendships through recreation ing, implementing, and evaluating recreation programs. Do activities offer a range of recreation choices, activities and home-school community collaboration. Includes a comprehensive annotated bibliography from spectator participation to interactive Available from the Institute on Community Integra- Available from Paul H. Brookes Publishing Company types of activities? tion. University of Minnesota, Minneapolis -612-624- Baltimore, Maryland 800-638-3775. 4512 . Do policies and procedures offer methods to School-Community Leisure Link: Leisure Education positively and quickly address situations in A Teacher's Guide to Including Students with Dis- Program Curriculum Guide (1992). which participant misunderstanding, abilities In Regular Physical Education (1994). By By C. Bullock, L. Morris, M. Mahon, and B. Jones. A behavior, or some other circumstance M. Block. A practical reference for regular education leisure education curriculum for elementary through threatens to disrupt the program or place teachers and adapted physical education specialists to senior high school students that is designed to be imple- participants at risk? meaningfully include children with disabilities in regu- mented across school, family, and community settings. lar physical education programs. Includes examples, Units include leisure awareness, leisure resources, lei- detailed assessment guidelines, suggestions for envi- sure communication skills, independent decision mak- Finally, it is necessary to ensure the ronmental and activity modifications, and a discussion ing, leisure planning, and activity skill instruction. Avail- individualized nature of the program to meet of inclusion issues and challenges. Available from Paul able from the Center for Recreation and Disabilities the varied needs of all participants. H. Brookes Publishing Company, Baltimore, Maryland Studies, University of North Carolina, Chapel Hill - 919- 800-638-3775. 962-0534.
Future Directions Powerful Partnerships: Parents and Professionals Project TRAIL Publications The inclusion of young people with Building Inclusive Recreation Programs Together A number of publications are available, including Lei- developmental disabilities in community (1995). By S. Schleien, J. Rynders, L. Heyne, and C. sure Education Self-Contained Instructional Packages recreation programs is an essential element in Taboume(Eds.). A compilation of writings by 22 au- for People with Cognitive Impairments, a manual for recognizing the inherent dignity of every thors - including parents and professionalson the use in creating educational board games that can be member of our society. Successful social history of inclusive recreation, strategies for enhancing used with persons with developmental disabilities in family and community development through inclusive leisure education programs; Community Support inclusion requires that major stakeholders recreation, and successful programs incorporating dif- Through Leisure Coaching, a guide to ways that family, of the service delivery system adopt a ferent inclusive recreation approaches. Available from friends, and community volunteers can assist a person philosophy and value system that reflects the Institute on Community Integration, University of with developmental disabilities in leisure pursuits; and the right of every individual to participate. Minnesota, Minneapolis -612-624-4512. publications on how to develop a detailed leisure edu- Of central importance is the recognition that all cation curriculum for persons with developmental dis- Lifelong Leisure Skills and Lifestyles for Persons abilities. Available from Project TRAIL. The University individuals have a valuable contribution to with Developmental Disabilities (1995). of Georgia, Athens - 706-542-5064. PAGE 19 TASH Newsletter, April 1998 BEST COPY AMIABLE ill INTEREST & ACTION GROUPS
As reported in the February TASH Newsletter, many of the Interest & Action Groups met in Boston in conjunction with the annual conference in December Following is a report on the current initiatives and 1998 agenda items to be addressed by the Community Living, Multicultural, Paraeducator, and Special Health Care Needs Interest & Action Groups. Update on TASH's Interest & Action (I&A) Groups COMMUNITY LIVING
The Community Living Interest & Action Group listed the following initiatives as its focus activities for 1998: Continue to organize and develop the Community Living Strand for the 1998 TASH Annual Conference; Continue networking efforts with the Sexual Orientation and the Multicultural Interest & Action groups; Support MiCASA legislation through lobbying and letter writing campaigns; Continue to advocate for and support the participation of people with labels in both the structure of TASH and the attendance of the annual conference. Patti Scott and Judith Snow are the Co-Coordinators of the Community Living I&A Group. Patti can be reached at 908- 821-8821; Judith's phone number is 416-538-9344 or you can e-mail her at [email protected] MULTICULTURAL INTEREST & ACTION GROUP
The Multicultural Interest & Action Group passed the following resolution regarding U.S. Membership in UNESCO: That TASH as an organization concerned about the rights and education of all children, actively support renewed U.S. membership in UNESCO. In endorsing this activity, the following actions will be necessary: 1.A letter from the TASH Board should be written to President Clinton detailing U.S. responsibility in assisting in meeting the special education needs of children in inclusive educational programs throughout the world and offering the assistance and expertise of TASH members. 2. A similar letter to the Speaker of the House of Representatives should also be sent. 3.The letter should then be published in the TASH Newsletter, along with notification to members that local chapters and individuals should advise the Senators and Representatives of all states of their support of U.S. membership in UNESCO.
If you would like to assist in the Multicultural Interest & Action group's work on this initiative, or to participate in the group contact Lynda Baumgardner, Coordinator, 307-837-2918 PARAEDUCATOR INTEREST & ACTION GROUP
Pat Mueller and Anna Lou Pickett will continue as Co-Coordinators of this Interest & Action Group. The Group sees as its critical issue in the next year the need to join forces with other organizationsincluding advocacy groups, unions, and professional organizations - representing different disciplines, and provider agencies to set guidelines for paraprofessional roles, supervision, training and career advancement. The Paraeducator Interest & Action Group has committed to provide leadership in the area of development of standards and guidelines through various activities, including Anna Lou Pickett's grant (NRC for Paraprofessionals). For more information or to participate in the group contact Patricia Mueller, 802-656-8374 or Anna Lou Pickett, 212-642-2948. SPECIAL HEALTH CARE NEEDS INTEREST & ACTION GROUP
Donna Lehr, Coordinator of this Interest & Action Group, reports that the Group will focus on the issue of integrating specialized medical expertise into inclusive community settings (school, work, resident). In addition, the Group will organize a strand around this topic during the 1998 TASH Annual Conference in Seattle. To participate in the Group, of if you are interested in working with the Special Health Care Needs Interest & Action Group on the conference strand, contact Donna Lehr, 617-650-1621.
PAGE20 TASH Newsletter, April 1998 SELECTING A SUMMER CAMP
"1r It's Summer Time! Let'sgo tocamp!
BY CYNTHIA BURKHOUR other family Unfortunately, many of us can share our rejection experiences Summer camp is a great place for ranging from the "we don't serve those kids to meet new friends, learn kind of children" excuse to the exciting "stuff," get bug bites and "wouldn't you rather choose that special sun burn, be independent from their camp that knows how to handle special parents, challenge themselves, sing songs, children" or the "fine, if you insist, but play games and have lots of fun! When Now do we find a camp we aren't going to do anything to picking a camp, parents and kids look for that is going to welcome accommodate your child's individual the kind of camp experience that will our child who has a needs" (translation: we'll ensure your meet their individual interests. Some child will fail so you won't come back families look for camps that provide disability? We begin by again). rustic outdoor living in tents, with looking for an invitation So, how do we find a camp that is opportunities to cook meals over an open in the camp literature going to welcome our child who has a fire. Some look for specialty camps that that tells us that disability? We begin by looking for an focus on cultural, performing or musical invitation in the camp literature that tells arts. There are trip and travel camps, they willingly serve us that they willingly serve ALL children. scout camps, "Y" (YMCA or YWCA) ALL children. This welcoming statement is sometimes camps, church camps, overnight residen- highlighted with the International tial camps and day camps run by a wide Symbol of Accessibility that draws our variety of public and private agencies and we should. In fact, the Americans with attention to the statement. We should organizations to choose from for most Disabilities Act ensures the rights of look for photos or images that show a families that is. Some of us don't seem to children with disabilities to access the diverse group of kids having a great have the same wide array of options and same experiences as children who do not time. Also, look for an opportunity to choices for our children. Our kids' have disabilities. Our children with share information about your child's opportunities are sometimes limited to disabilities can not be denied the individual needs for support on the those camps that are willing to accept opportunity to participate in, or registration form. Sometimes this is just "those kind of children." You know, benefit from, programs, services and a box to check that indicates you would those "special" camps out there, some- activities that are available to any like to talk to someone about your child's where, separate and different, staffed with other children and they have the right individual support or accommodation inordinate numbers of "special" staff, to have those experiences in the most needs. Other times there is space on the "specially" trained to provide a very integrated setting possible. form to share pertinent information about "special" camp experience, just for All kids should have the same your child and an invitation to call the "special" children just like ours. opportunities for summer fun at camp, camp to discuss personal issues you wish But what if you and your child just together with their friends. Choosing not to include on a general registration want a typical camp, where kids from and then registering for camp should be form. your neighborhood, church, or your no more involved for our families than Always talk to someone in person! child's school are going to go this anyone else. We shouldn't have to meet Ask questions about what the camp has to summer? Shouldn't we have all the same some "special" criteria for our family that offer. Question the kinds of experience choices as any other family? Of course is different than the eligibility for any Continued on page 22
PAGE 21 .1 1 C-i TASH Newsletter, April 1998 SELECTING A SUMMER CAMP
It's Summer Time! they have been prepared with the most Let's go to camp! appropriate information. Remember, too, Continued from page 21 that many camps do not encourage kids the staff have and what kind of experience to contact their parents during camp to the camp has including children with help support the camper's independence. disabilities. Find out what their expecta- This builds self-esteem and confidence tions are for camper behavior, participa- for the campers and the parents. tion, knowledge and skills. Share your In your discussions, Openly communicate your evalua- expectations for your child's experience, as look for creative problem tion of your child's experience. Camps well as your fears and concerns. They solving, a welcoming need to hear about what went well from your perspective, as well as any sugges- need to know what level of physical attitude and a desire to accessibility your child needs. They need tions you may have for improving future to know what to expect. Be open and serve your child as a experiences for your child or others. Tell honest about your child's strengths and unique individual. them what made you comfortable, what limitations. Tell them what works best All kids are special and your child liked best, who did a really effective job working with your child, with your child so they are comfortable, have unique needs that safe and happy. If your child works best what accessibility issues may have arisen. with a big picture schedule of the day, should be considered The more we talk to each other and make then tell them that. Or, if your child by the camp. plans to improve the camper experience functions best with a more detailed "order the better it will be for all campers. of life" approach, then teach them how to Finally, we need to make sure our provide that support. environmental barriers. We came up with kids have the right "stuff" to have a great It is very helpful for parents to meet a plan for the camp to borrow a golf cart time at camp. If you don't know what with the actual program leaders and cabin for the week to help Erin get between that is, make sure you ask! There is or group leaders to talk about how the day activities. They would toss in her wheel- nothing worse than being too hot or cold, is planned, so you can give input into chair and she would pick two friends to wet or sunburned or having sore feet potential areas of concern for your child. ride along out to the archery range. They because you don't have the right kind of In addition, the camp will need to have would drive along slowly with the rest of shoes for the environment. Kids need to adequate information to prepare your the kids who were walking, so that have that comfort "stuff," too, like that child on what to expect. If your child uses everyone got there kind of in the same special teddy bear or book and the all a wheelchair and may need some addi- way, except Erin had the cart to move her important flashlight with lots of batteries tional assistance to move around in a large with the group. Our friends' daughter, for night time. Kids with disabilities may outdoor camp environment, discuss the Elizabeth, was going to a day camp, so also need some additional adaptive kinds of support that may be effective. they sent her in her running stroller that equipment that may help them to be Remember, most camps cover large was easier to push around out of doors more independent or successful in the outdoor open spaces. Many camps are old than her wheelchair. Getting our kids activities of camp life. and do not have many highly developed around was seen as a solvable little Our daughter took along her pathways or buildings. Even though the obstacle, not an unremovable barrier once wheelchair to help get around and her environment is rustic and may not have we talked about how it could be done. own rocker knife for cutting her food, paved trails, that doesn't mean your child In your discussions, look for creative both of which gave her greater personal with mobility limitations can't come and problem solving, a welcoming attitude independence. When she went on a have a great time. What it does mean is and a desire to serve your child as a canoeing and backpacking trip, she took that you need to work together with the unique individual. All kids are special along an adaptive paddle we made for camp to figure out alternative means of and have unique needs that should be her so she could do her fair share of the getting around that remove those environ- considered by the camp. paddling. This was really important to mental barriers.Even when there are Develop these open lines of commu- her. She wanted to be valued as a environmental barriers like sand, hills, nication and then keep them open contributing participant like everyone unimproved paths or other obstacles throughout the registration process, as else and she wanted to do her share. The that make getting around difficult, well as during and after camp. Make sure paddle she needed didn't exist, so we camps still must provide programmatic the staff feels comfortable contacting you made it and the kids figured out the rest access through reasonable accommoda- during camp if a situation arises that they with some helpful guidance from the tions, adaptations and supports. aren't sure how to handle. But don't adults on the trip. Erin was fully For example, when our daughter panic if they don't call during camp. included in all aspects of the experience went to camp right after her stroke and Remember, they are trained to work with with some minor adjustments that while she was still using her wheelchair children through the entire camp certainly didn't get in the way of the fun. to get around over large distances, we experience and may not need any There were still some activities of the trip discussed the issue of how best to combat additional input from you, especially if Continued on page 23 PAGE 22 120 TASH Newsletter, April 1998 SELECTING A SUMMER CAMP
It's Summer Time! support from another camper. She would ALL kids with disabilities together with Let's go to camp! gather their share of the firewood if they their friends who do not have disabilities. Continued from page 22 would do her part of the cooking that she Camps can include ALL children if we wasn't able to. The most important thing work together. Look for a camp that that she couldn't do because of her for Erin was to be included as an equal shares your vision and will realize your limitations. When they found something partner in the whole camp experience. dream, then sign 'ern up and send 'em off she couldn't do, then she bartered Summer camp can be accessible to to a wonderful summer adventure! Inclusive Summer Recreation: An Alternative to Separate Extended Year Programs
BY CYNTHIA BURKHOUR Students maintain friendships over the summer through How do we change this scenario and afford kids with dis- leisure connections with peers in recreation activities. abilities typical summer opportunities while still meeting our Kids with disabilities need to have these same experi- responsibility for providing extended year services? Spread ences. The IDEA and the ADA both offer strategies and tech- the word! Educators, parents and recreation providers need niques to help us make it happen for our children. We have to learn about the concept and the processes utilized to make the same responsibilities as other parents do to make it hap- it happen. They need to learn how to work together to make pen for our children. We need to sign them up, pay the fee, inclusive summer recreation opportunities a viable alterna- car pool, take our turn bringing snacks, volunteer for special tive to separate/center-based summer school programs. Each events, etc., just like all the other parents. The recreation pro- has responsibilities for taking the necessary steps to utilize viders have a legal, moral and ethical responsibility to wel- this integrated option. come ALL participants and to provide accommodations, ad- aptations and supports to facilitate participation under the Educators and families can put recreation, as a related ADA. Under the IDEA, recreation is a related service just like service, on the LEY , writing goals and objectives for occupational, physical, and speech therapies. Educators have inclusive summer leisure services, in the community with a responsibility to assist students to access leisure and extra- classmates. curricular activities to maximize the special education experi- Schools can utilize educational program funds typically ence. As kids are being fully included in typical classrooms, spent on the student in separate extended year services to the need for typical social and leisure experiences with class- purchase inclusive leisure services and support services. mates outside of the school day is increasing. Schools and families can work with recreation programs Unfortunately, many students receiving special education to provide education and training for the summer recre- services who are included in typical classrooms and qualify ation program leaders on individual accommodations and for extended year services only have separate/center-based support techniques to increase successful inclusion for summer program options available to them. Their classmates, students with disabilities. who do not have disabilities, are participating in summer rec- reation activities and programs at their neighborhood parks, Wonderful stories are emerging as we begin to include playgrounds, pools or recreation centers and at camp. These recreation as an integral part of the educational experience. students maintain friendships over the summer through this Kids are learning to value each other's contributions and focus leisure connection with their peers in summer recreation ac- on what each CAN do in the classroom, on the playground, in tivities and programs. A tremendous amount of learning hap- the neighborhood and at the park. Kids are learning to enjoy pens in these summer experiences that reinforces and demon- each other's uniqueness and learning how to cooperate and strates the application of academic as well as social skills ac- support one another. They are learning about "doing it differ- quired in the classroom. At this time, students with disabili- ently" and still having fun. ties do not have the same summer opportunities. Typically Getting our kids involved with recreation opportunities these students are served in summer school programs just for with their classmates is not only the right thing to do, it's a students requiring extended year services.This effectively positive thing for all kids. Just think of the wonderful rela- segregates them from participation with their classmates, tionships there will be in the future for our children if we help and does not afford them typical learning and social opportu- them to become more than classmates, to become friends who nities with their friends. Many students have expressed their share common leisure interests and experiences. These kids displeasure with this "only option" and have said they want to of today are the grown-ups of tomorrow. These kids of today do what their friends do, and not be "sent back," as one girl will break down the barriers of segregation and will build put it, to a segregated classroom for the summer. welcoming communities for everyone.
PAGE 23 12 TASH Newsletter, April 1998 RECREATION AS A RELATED SERVICE
RECREATION AS A RELATED SERVICE
Recreation is identified in I.D.E.A. as a related service essential regarding the ability of an individual to which enhances the educational goals of a child with a interact with others and their environment disability.If recreation is included in the child's I.E.P, it cannot be completed by a curricular service such as a functional tool that can be used to achieve social, special education or physical education. Recreation as a emotional, and physical objectives identified in the related service provides assistance, instruction and student's I.E.P intervention to enhance and expand the quality of the educational process provided to students with disabilities. >-a vehicle by which the student can experience Its services can include: assessment of recreation and important aspects of community adjustment, espe- leisure functioning, leisure education (instruction to cially in the transition from school to work improve leisure participation and lifestyle of students with disabilities through leisure attitude, knowledge, and skill empirically significant in the successful integration of development), therapeutic recreation services, and students with disabilities into their community recreation in school and community agencies. Recreation should be provided by a trained Therapeutic Recreation Specialist (TRS) as specified, in I.D.E.A. The actual role of Recreation as a related service the TRS varies dependent on the actual school in which consists of four components.: they are employed. Generally, the TRS serves as a direct service deliverer and/or consultant depending on the 1. Assessment of recreation and leisure functioning needs of the student. procedures to determine current functional strengths in terms of skills, abilities, and attitudes relative to recreation and leisure as the basis for I.E.P prescrip- tion and subsequent remediation. Adapted Physical Education 2.Leisure Education - instruction to improve the leisure )1.. recess time for the children participation and leisure lifestyle through the develop- ment of positive attitudes toward leisure, the develop- )1- a duplication of other related services ment of skills necessary for recreation participation, knowledge of recreation resources, and recognition of )1- used instead of other related services the benefits of recreation involvement.
3.Therapeutic Recreation - the purposive use of Recreation as a related service IS: recreation activities and experiences to ameliorate deficits in social, cognitive, and physical functioning. significant in its impact on the social and psychologi- cal adjustment of an individual 4.Recreation in school and community agencies - the provision of recreation services in the least restrictive )0- instrumental in the development of a sense of self- environment. worth and identity of an individual
Cindy Burhhour is an Inclusive Recreation Consultant based in Jenison, Michigan and is Coordinator of TASH's Leisure & Recreation Interest & Action Group. For more information on inclusive recreation programs or if you'd like to participate on the Leisure & Recreation I&A Group, contact Cindy at [email protected].
PAGE 24 122 TASH Newsletter, April 1998 THE RURAL RECREATION INTEGRATION PROJECT
Recreation and leisure are essential able to include people with disabilities. in a person's life. This is true In addition, there was limited whether you are short or tall, communication between the human Recreation young or old, with or without a disability. service and leisure service delivery Recreation is what often draws us into systems. Professionals working in the friendships, involves us in our communi- human service system have expertise in ties, and increases our health and quality the concerns of people with disabilities of life. However, residing in a commu- and are highly aware of their leisure and Human nity does not necessarily ensure inclusion social needs, and barriers that people in its recreation network. with disabilities encounter. Leisure In North Dakota, people with service providers, on the other hand, disabilities now reside primarily in local have the facilities, resources, and exper- Services communities, both large and small. This tise in recreation programming, but often was not always the case. Less than 15 lack awareness of the needs of people years ago, many people with disabilities with disabilities living in their communi- lived in institutional settings such as state ties or how to meet those needs. schools and state hospitals. Following a The Rural Recreation Integration Partnerships: 1981 lawsuit brought forward by the Arc Project (RRIP), a collaborative effort of North Dakota, large numbers of people between the North Dakota Parks and with disabilities were "placed" in a variety Recreation Department and the Univer- of less restrictive living environments sity of North Dakota, has challenged itself throughout the state. Through the work to bridge the gap between these two The Rural of the human service system, communi- service delivery systems. Its intent is to ties may have been physically prepared to develop and help sustain naturally accept individuals with disabilities by occurring networks where resources and meeting their housing and vocational expertise could be shared to most Recreation needs. However, they were not ad- effectively meet the recreation needs of equately prepared to socially include people with disabilities in their commu- individuals with disabilities in their nities. communities by meeting their recreation The purpose of the project is to and leisure needs. The recreation/leisure facilitate the physical and social inclusion Integration service system, which traditionally of people with disabilities into existing provides recreation services to communi- community recreation and leisure ties, had not been prepared to include programs and services. The two primary people with disabilities in the services it activities of the RR1P are training and Project provides. Whether park and recreation technical assistance. Certified therapeutic departments, YMCAs and YWCAs, sports recreation specialists have provided training and technical assistance to aid in BY LYNN ANDERSON, CANA BROWN, leagues, church camps, or Girl Scout AND PATRICIA SOLI troops, there was a need in our state to the development of skills, knowledge, increase the level of awareness and the and networks of leisure service providers skills of recreation service providers to be and human service providers in North Continued on page 26
Oft.
111111111.1.111111.4"' PAGE 25123 TASH Newsletter, April 1998 THE RURAL INTEGRATION PROJECT
The Rural Recreation the certified therapeutic recreation positive attitudes toward people with Integration Project specialists to help the partners implement disabilities and in their knowledge of Continued from page 25 inclusion in their agencies. Technical inclusion strategies. The majority of the assistance was as varied as the unique training participants implemented Dakota as they work to include people needs each partnership posed. Examples inclusion at their agencies, working in with disabilities. of assistance included the following: partnerships to better utilize expertise Intensive training was conducted and resources. over a three-year period to over 250 Staff training on disability awareness Mary Jo's story is just one example of people who work in it variety of profes- and inclusion to YMCA summer the impact the project has had on sional areas in parks and recreation and camp staff; individual's life (see article on page 27). in human services. Participants in the Assistance to a parent advocacy In addition, some systems change is training included people with disabilities group to plan, implement, and beginning to occur. For example, most and their family members, park directors, evaluate a friendship/inclusion larger park districts across the state have social workers, recreation specialists. program; revised their mission statements, agency group home managers, youth directors. Review and revision of a park literature, and registration processes to be Girl Scout staff, advocacy groups, and district's spring/summer schedule more inclusive and welcoming to people others. The training was conducted over and registration form to be more with disabilities. Some communities a two-month period each year. Because inclusive; have formed access advisory groups to North Dakota is a large, sparsely popu- Disability awareness training to a work on community recreation issues. lated state, we used the North Dakota church youth group; Partnerships have been formed between Interactive Video Network to conduct the Provision of leisure education to disability advocacy groups and park training. Through a series of classrooms people with disabilities living in groups. connected by video technology across the group homes, with a focus on how to The Rural Recreation Integration state, people were able to attend the access community recreation Project can be thought of as a pebble training in or very near their home services; thrown in the water, with ripples spread- community. The training focused on Training for peer advocates in a ing across the state. The project has disability awareness, physical and gymnastics program to facilitate raised awareness and increased opportu- program accessibility, and implementa- inclusion of children with disabili- nities for people with disabilities to be a tion of inclusion in park and recreation ties; part of inclusive recreation services. The programs. During the training, partici- Assistance with development of a challenge now is to keep those ripples pants formed partnerships composed of a before- and after-school program that moving. human service provider and a leisure is inclusive of all children; service provider. Examples of partner- Assistance with development of a ships included the following: position for an inclusion coordinator Lynn Anderson is Associate A Girl Scout council and an Arc to be shared by four agencies; and Professor with the Department of chapter Accessibility survey and transition Health, Physical Education and A city park and recreation district plan for Girl Scout camp. Recreation, University of North and a group home system Dakota, Grand Forks. Carla A state park and a disability advo- In addition, technical assistance has Brown and Patricia Soli are cacy group included the development and use of an Recreation Specialists with the YMCA youth sports leagues and a adaptive recreation equipment loan North Dakota Parks and Recre- special recreation center library, and provision of staff training, ation Department, Grand Forks A park district summer playground needs assessments, and other supports and Bismarck, respectively. program and a parent advocacy for agencies. Project staff have worked group from an agency level to an individual For more information on the RRIP A gymnastics club and a school level, helping children and adults with contact Lynn Anderson at 701- district adaptive physical education disabilities and their families be included 777-2978. program in the recreation activities of their choice in their communities. NOTE: The Rural Recreation Together, the partners worked to Through the RRIP, we have raised the Integration Project is partially include at least three people with awareness and skills of recreation funded by Award #H128J30112 disabilities in recreation programs. providers across the state of North from the Office of Special Educa- Assignments were completed during the Dakota on how to better serve people tion and Rehabilitative Services, training, but much of the work of with disabilities in their own communi- U.S. Department of Education. implementing inclusion occurred after ties. The 200-plus participants who the training concluded. completed the formal training with the Technical assistance was provided by project showed a significant increase in
PAGE 26 TASH Newsletter, April 1998 1 2 MARY JO'S STORY The Doors Are Opening: Mary Jo's Story As I drove up to the school door, BY VIRGINIA ESSLINGER she noticed that Mary Jo had really Mary Jo said, "I go by myself; you enjoyed it and seemed to do quite well, stay here!" I inquired, "Do you given her gross motor delays. She remember where the meeting room is?" suggested that we consider enrolling her to which she replied an emphatic "YES!" in a gymnastics club to continue with So I remained in the car as my vivacious, gymnastics. She met us at the gymnastics dark-haired, dark-eyed, 11-year-old club and introduced us to the coordina- daughter, who happens to have Down tor. They explained that they both had syndrome, bounded out of the car and been taking classes provided by the RRIP closed the door. As she was getting out and were looking for children with of the car, three of her fellow Girl Scout disabilities to enroll in gymnastics. Mary troop members were getting out of their Jo has been involved in gymnastics cars and coming toward the school door. continuously ever since. She has made I heard, "Hi, Mary Jo," and "I like your gains in motor ability, balance, coordina- new glasses." I watched as they all tion, and self-discipline, and has met walked in together and headed to the many other children from around the city. Junior Girl Scout meeting. We believe that her gymnastics experi- Every parent wants his or her child ence contributed to her ability to finally to be involved and socially accepted. learn to ride her bicycle without training Those of us who parent children with wheels. The most important factor is that disabilities want this for our children as she truly enjoys gymnastics. She looks much, if not more, than parents of forward to going and participates fully children without disabilities. Some- with the other children in her classes. times, for our children, it doesn't come We know we will not always be Had it not been for her gym teacher easily. When Mary Jo first joined a around to advocate for her. Her participating in the RRIP, Mary Jo may Brownie troop, she was fortunate to have friends and the community will have missed this wonderful opportunity a troop leader who was very matter-of- have to help with that by having There is no question in our minds fact and accepting of the fact that Mary Jo inclusion as an integral part of life. that the RRIP has had a positive impact had Down syndrome. Mary Jo truly The RRIP has enhanced that on Mary Jo's life. Although she has loved being a part of a Brownie troop, so process, and in some cases, begun Down syndrome, she has goals and when she was too old for Brownies, she that process. The doors are dreams just like other children. Her "flew up" to Junior Girl Scouts. There opening and Mary Jo wants to go goals include living as independently was not a troop at her grade level in her through them with her friends. as possible in this community, and neighborhood school where she is fully doing all the things that other people included in a regular classroom, so she do, like working, having friends, and was assigned to a troop in a neighboring having fun. The relationships she is school. The leaders were accepting of from them and act accordingly. forming and the relationship skills she is her; however, at times they seemed a bit The girls seem to accept Mary Jo as a learning through recreational activities tentative about dealing with her. Then member of the troop. They always greet are very precious and important to her one evening, a member of the Rural her, include her in games and activities, and to us. We know we will not always Recreation Integration Project (RRIP) and assist her when she needs (and will be around to advocate for her. Her spoke to all of the Girl Scout leaders. The accept) help. Mary Jo truly enjoys being friends and the community will have to next day, one of the leader of Mary Jo's a part of the Girl Scout troop. She always help with that by having inclusion as an troop told me about what they had heard remembers the meetings and is excited integral part of life. The RRIP has and how helpful the information she about going. She is learning to interact enhanced that process, and in some provided had been to them. Both leaders socially with children outside of her cases, begun that process. The doors are now actively find ways to make sure that own school, is learning the discipline opening and Mary Jo wants to go through Mary Jo is fully included in all activities provided in the Girl Scout program, them with her friends. of the troop and seem much more and is learning all kinds of other comfortable with her. This is important, things from speakers and activities. Contributed by Virginia Esslinger I believe, as the girls in the troop will One evening last year, we received a Mary Jo's mother The family lives in take their cue from the leaders. If the call from Mary Jo's gym teacher at her Grand Forks, North Dakota. leaders model acceptance and ways of school. The teacher said that they were including Mary Jo, the girls will learn just finishing a unit on gymnastics and PAGE 27 125 TASH Newsletter, April 1998 The Second Annual National Conference FREED OM
onSelf-Determination E-f Ailinneapolis Hilton and Towers July 10-11, 1998 0 a The Second Annual National Conference on Self-Determination, sponsored by The National Program Office on Self-Determination, aC. Everett Koop, Former Surgeon General project of The Robert Wood Johnson of the United States and Chair of the RESPONSIBILITY Foundation, will feature two full confer- Advisory Committee for the National Self- ence days with in-depth presentations and Determination Project. Michael Callahan, Marc Gold and Associ- discussions around the issues critical to ates and United Cerebral Palsy Associa- Joseph Shapiro, Senior Writer for U.S. tions, Inc., Mississippi making the concept of self-determination News and World Report, and author of "No a reality. Self-determination refers to a Pity," a history of the disability rights James Conroy, The Center for Outcome range of efforts aimed at assisting people movement. Mr. Shapiro is currently Analysis, Pennsylvania with disabilities and their families to working on a new book on the future of choose what supports they receive, long-term care in America. Cathy Ficker-Terrill, Vice-President of determine how they live and work in the Quality and Strategic Planning, Ray community, and control their own funds Quincy Abbot, President of the Arc of the Graham Association for People with United States and a member of the for supports. Participants will have the Disabilities and President of the American Advisory Committee for the National Self- Association on Mental Retardation opportunity to interact with international Determination Project. leaders in the self-determination move- Chester Finn, Immediate Past President, ment through an extraordinary range of Allan Bergman, Director of State-Federal Self-Advocacy Association of New York State plenary sessions, workshops, discussion Relations, United Cerebral Palsy Associa- forums, luncheon and dinner presenta- tions, Inc. Robert Gettings, Executive Director, tions, poster sessions and informal National Association of State Directors of Valerie Bradley, Human Services networking opportunities. Developmental Disabilities Services and a Research Institute, Massachusetts member of the Advisory Committee for the National Self-Determination Project
Robert Kafka, founding member of ADAP7 , Tentative Program Agenda Texas
Thursday, July 9, 1998 David Mank, Institute for the Study of Developmental Disabilities, Indiana University 9:00 - 4:00 PM Pre-conference workshops A. Self-Advocacy Debra McLean, Oregon Technical B. Common Vision: Building Knowledge and Assistance Corporation Leadership from the Inside/Out sponsored by ACT Tia Nelis, President, Self Advocates 5:00-9:00 PM Welcome Reception for All Becoming Empowered (SABE), the Participants and General Registration National Self-Advocacy Group
Friday, July 10, 1998 Tom Nerney, Co-Director, the National Program Office on Self-Determination 7:30-8:30 AM Registration 8:30-10:00 AM Opening General Session 10:45-12:15 AM Concurrent Breakout Sessions Clint Perrin, President, Self-Advocacy 12:15-1:30 PM Lunch on your Own Association of New York State 1:30-5:00 PM Concurrent Breakout Sessions (Continued on next page) 6:00-9:00 PM Dinner Plenary Session (Included with registration) The conference is cosponsored by: Saturday, July 11, 1998 TASH 8:00-11:15 AMConcurrent Breakout Sessions The University of Minnesota. Institute on 11:15-12:15 AM Poster Sessions Community Inteuration, UAP 12:30-1:45 PM Plenary Luncheon (Included with registration) Institute on Disability. VAR University of 2:00-4:00 PM Closing Plenary New Hampshire
The Arc of the United States TASH Newsletter, April 1998 BEST COPYAVAILABLE PAGE 28 126 Bonita Scott, State President, People Look for breakout sessions and First of Tennessee roundtable discussions on these Conference Location topics: Kim Sheridan, Ryerson Communica- Minneapolis Hilton and Towers Medicaid and Changing State Waivers tions, Inc., and Communications Director 1001 Marquette Avenue South Employment Through Individual for the National Self-Determination Project Minneapolis, MN 55403 Budgets Telephone: (612) 376-1000 Don Shumway, Co-Director, the National Self-Advocacy as a Political Force Toll-Free: 1-800-HILTONS Program Office on Self-Determination Support and Brokerage Agencies Fiscal Intermediaries Special Reduced Conference Rate: Niki Smith, Oregon Mental Health and HR2020: The Medicaid Community Single/Double - $114.00 Developmental Disabilities Services Division Attendant Services Act (MiCASA) Additional Person$20.00 and member of the Advisory Committee for Self-Determination as Public Policy Current state and local taxes the National Self-Determination Project The New Quality Assurance are 12% Self-Determination: Using Medicaid to Michael Smull, Support Development Get From Here to There (ask for the Associates, Maryland Leaving Institutions Self-Determination Conference) Individual Budgets: Moving From Madeline Will, Vice-President, Commu- Institutions to the Community Using nity Options, and a member of the Self-Determination Personal Care Services Advisory Committee for the National Self- Communications: Linking Communities If you require Personal Attendant Ser- Determination Project Through a Private, National Intranet vices, please contact: Becklund Home The Waiting List Initiative: Moving Health Care at 612-544-0315. Please call Self-Determination State Project Dollars Directly to Families at least 72 hours in advance to arrange Directors Family Roles assistance. Personal Stories Presenters from Advocating Change Rethinking Money in the Investment of Access Accommodations Together, Inc., (ACT), a nonprofit disability People with Developmental Disabilities rights organization from Minnesota Managed Care and Self-Determination Sign language interpreters, assistive Systems Change listening devices, large print and other The conference sessions will focus and much more! communication accommodations will be on strategies to make the four provided upon request. This brochure and principles of Self-Determination General Information all conference materials are available in a reality for individuals with disabilities Braille, as a text file on IBM or Macintosh and their families. The principles are: Travel Arrangements disk, or in large print on request.
FreedomThe ability for individuals with +AirlineInformation Registration Fees disabilities, along with freely chosen family Northwest Airlines has been designated and friends, to plan a life with necessary Registration fees include all conference supports rather than purchase a program; as the official carrier for attendees of the Second Annual National Conference on sessions, morning refreshments, Thursday Self-Determination. Service is available toreception, Friday dinner, and Saturday AuthorityThe ability for a person with a lunch. All fees must be paid in advance of disability (with a social support network or Minneapolis through the Minneapolis St. Paul International Airport. Northwest the conference. Each person registering circle if needed) to control a certain sum of must complete a separate registration dollars in order to purchase these supports; offers a 5% discount off any published Northwest roundtrip fare purchased with form, indicating if attendance at the meals is planned, and specifying any accessibil- SupportThe arranging of resources and at least 7 days notice and a 10% discount off published fares purchased with over 60ity requests. Registration is in advance personnel (both formal and informal) that only and space is limited. will assist an individual with a disability to days advance notice.Reservations can be made over the Internet at: www.nwa.com, live a life in the community rich in commu- Full Registration $184.00 nity associations and contribution; and or by calling 1-800-328-1111. Please refer to Wordfile NY6RM. Parent/Self-Advocate Registration $84.00 ResponsibilityThe acceptance of a (see page 30 to register for the conference) valued role in a person's community Airport Express Shuttle through competitive employment, organiza- The shuttle leaves every 15-20 minutes tional affiliations, spiritual development from the Airport Express Shuttle Desk on Scholarships and Stipends and general caring for others in the the Ground Transportation Level. The A limited number of scholarships and community, as well as accountability for shuttle cost is $10.00 one way, $16.50 stipends are available. For more informa- spending public dollars in ways that are roundtrip. For accessible shuttles please tion, please call Denise Marshall 410-828-8274 x 103. life enhancing for persons with disabilities. call 612-827-7777 in advance. PAGE 29 127 TASH Newsletter, April 1998 REGISTRATION FORM
The Second Annual ConferenceonSelf-Determination REGISTRATION FORM
Please fill out a separate form for each person registering for the conference. Space is limited, so register early! Registration is advance only. Registrations must be received by July 6, 1998.
O Please register me for the Self-Determination Conference to be held on July 10-11, 1998.General Registration Fee: $184.00 Self-Advocate/Parent Registration Fee: $84.00 OI would like a ticket to attend the 0 Friday Dinner D Saturday Luncheon (tickets to these events are at no extra charge, but must be requested in advance)
Name.
Organization/University/Agency
Mailing AddressThis address is: 0 Home 0 Work
Address-
City.
State: Zip/Postal Code Country
Telephone Fax
Accessibility Requests
Payment Information and Terms
1 Enter Applicable Conference Registration Rate: Total Enclosed:
Registration will not be accepted without payment by check, official purchase order, or credit card authorization. Please note that payment must be in U.S. Funds only. A $25.00 processing fee will be deducted for cancellations received before July 6th, 1998. Refunds will not be issued for cancellations after that date. A $15.00 fee for returned checks or unauthorized charges will be assessed.
O Check Enclosed0 Purchase OrderNoucher Number 0 Visa0 Mastercard0 Discover Card Number Exp Date:
Signature:
Mail Form: Self-Determination Conference Fax: 410-828-6706 do TASH Questions: Phone: 1-800-482-TASH (8274) or 29 W. Susquehanna Avenue, Suite 210 410-828-8274 Baltimore, MD 21204 TDD:410-828-1306 Website: http://www.tash.org I. PAGE 30 12 6 TASH Newsletter, April 1998 APRIL 1998
The University of Washington Graduate Program CORRECTION: trains teachers to serve the There was an error in The Letter to Chief State needs of pupils with significant School Officers that appeared in the December 1997/January 1998 edition of the TASH Newslet- disabilities. Emphasis on data- ter The following paragraph is the correct final based, systematic instruction paragraph of that letter. TASH offers its apolo- referenced to the requirements gies to the co-signers of this letter. of natural school and commu-
We hope you will proceed in accordance with the Act, nity settings. M.Ed. degree plus and both encourage and enable those schools for which initial teacher certification pos- you have responsibility to do so, by adhering to the sible. Dr. Felix Billingsley, Area Act's limitations on the hinds of discipline that may be of Special Education, 102 Miller used and affirmatively by aggressively assist- ing those schools to know and to adopt both the best Hall, Box 353600, University of educational practices and the best classroom man- Washington, Seattle, WA agement practices. 98195, (206) 543-1827, e-mail [email protected]
Special Education Service Agency Anchorage, Alaska The Special Education Service Agency currently has two va- with moderate/significant disabilities and extensive course work cancies for an Education Specialist in the following areas.For in orthopedic and other health conditions; minimum of three years more information about our organization, contact our website at recent experience working with learner with orthopedic and other http:/Jwww.sesa.org. health conditions; Education Specialist - Autism Spectrum Disorders: Mini- Experience Needed: (1) Developing augmentative commu- mum Qualifications: Master's degree in education with emphasis nication systems; (2) current teaching knowledge using assistive on learners with autism spectrum disorders or Master's degree in technology; (3) ability to work collaboratively and independently; education with emphasis on the learner with moderate/signifi- (4) qualify for Alaska DOE Special Education Type A Certifica- cant disabilities and extensive course work on autism; minimum tion. Excellent health, ability to travel extensively and indepen- of three years recent experience working with learners with au- dently in mral/remote Alaska. tism spectrum disorders. Preferred Experience: (1) Working with preschool through high Experience Needed: (1) developing communication-based sup- school age ranges; (2) working across student ability levels; (3) ex- port strategies; (2) teaching social interaction and play skills; (3) perience and/or training with students who are medically fragile; developing programs to enhance communication skills; (4) current (4) experienced and/or training in traumatic brain injury; (5) train- knowledge of assistive technology; (5) knowledge of current re- ing professional and/or para-professional educators; (6) inter-agency search and range of educational practices in the field of autism; (6) networking and collaboration. qualify for Alaska DOE Special Education Type A Certification. Ex- For more information about employment or to submit a re- cellent health; ability to travel extensively and independently in rural/ sume and letter of inquiry, please contact: remote Alaska; ability to work collaboratively and independently. Ron Jones, Program Administrator Education SpecialistOrthopedic/Other Health Condi- Special Education Service Agency tions: Minimum Qualifications: Master's degree in education with 2217 E. Tudor Road, Suite 1, Anchorage, AK 99507 emphasis on learners with orthopedic and other health condi- 907-562-7372Fax: 907-562-0545 tions or Master's degree in education with emphasis on the learner e-mail: [email protected]
PAGE 3112 3 TASH Newsletter, April 1998 TASH NEWSLETTER 0 0 Priscilla Newton, Editor z Policy Statement Executive Board 0 0 4:EFL I- It is TASH's mission to eliminate physical and social ob- Liz Healey, President ge- CI- Q. (1) C4 stacles that prevent equity, diversity and quality of life Mark Partin, Vice President Z LU L1J for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee > Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary (7). titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy Barbara Buswell All contributors and advertisers are asked to abide Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION Referred by: Name: Address: City/State/Zip:
Telephone: ( Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ 0 work address E honie address college/library/school $200. E other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant () Administrator/Adult Services (for whom payment of full fee would present a hardship) $45. () Administrator/Education Family (group rate) $136. () Administrator/Other Lifetime Member $1000. () Adult .Service Provider/Staff All dues are $15 higher for.members outside the () Behavior Specialist U.S. & Canada. Funds must be submitted in () Case Manager U.S. Dollars. () Early Childhood Services If you would like to charge your membership, please fill in the necessary information: () Educator/Teacher () Mastercard () Visa () Discover () Gov. Personnel (Federal, State, Local) Card Number () Higher Education () Interested Individual/Advocate/Friend Expiration Date () Legal Services Provider Signature ( ) Occupational/Physical Therapist () I would like to arrange to spread my () Parent/Family Member payments out. () Personal Assistant Enclose 1/3 and you will receive 2 additional invoices at monthly intervals. () Professional Public Policy Advocate How did you learn of TASH: () Psychologist ( ) Regular Education Teacher/ What, in particular, inspired you to join: Administrator ( ) Related Services Provider What other disability organization do you belong ( ) Self-Advocate to: If you are applying for a student membership, () Social Worker please provide the following information: ( ) Speech/Language Pathologist Department ( ) Special Education Teacher/Support Specialist College/University ( ) Staff Development/Trainer Student 1.D. Number ( ) Student (College/University) Anticipated year of completion ( ) Supported Employment/Day Personnel( ) Add $15 if you would like to become a mem- ber of your local TASH Chapter. ( ) Other Please make check payable to: TASH cn Moving? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 130 trrt 77747,- --57ii"tir, 'CT, t
1.
t , 810`
INSIDE: Future Senior Family Caregiver Support Planning for Project, States' Waiting List Watch and Individuals Providing Support for Families of Th Adults with Mental Retardation 131
tt.r. t.t.. 1134 Ata: FROM THE EXECUTIVE DIRECTOR
TABLE OF CONTENTS new TASH award dedicated to the memory of their son, Thomas. The THOMAS G. HARING AWARD PAGE 2 Thomas G. Haring Award will be pre- 1998 TASH ANNUAL CONFERENCE PAGE 4 sented at the annual TASH Conference to THE SENIOR FAMILY CAREGIVER SUPPORT PROJECT PAGE 8 the author(s) of a study of particular IN MEMORY OF RICHARD LEPORE PAGE 12 significance that was published in JASH FUTURE PLANNING FOR YOUR CHILDPAGE 13 within the two years prior to the Confer- SECOND ANNUAL NATIONAL SELF- ence. This $1,000 award will be pre- DETERMINATION CONFERENCE PAGE 15 WAITING LIST WATCH PAGE 17 sented for the first time at the conference this year in Seattle. EQUITY AND EXCELLENCE From the Executive Director CONFERENCE PAGE 20 Tom received his Bachelor of Science BY NANCY WEISS PROVIDING SUPPORT FOR FAMILIES OF ADULTS degree in cell and molecular biology from WITH MENTAL RETARDATION PAGE 21 the University of Washington in 1976 and SIBLING SUPPORTS PAGE 25 TAM INTRODUCES A CENTER ON HUMAN POLICY: COMMON NEW AWARD had planned to go to medical school. He GROUND PROGRAM PAGE 28 decided instead to go directly into work IN MEMORY OF PAUL HEARNE PAGE 30 with students with significant disabilities. SUPPORT MOUTH MAGAZINE PAGE 31 Norris Haring, one of the founders of In 1977, he completed his Master of TASH and an honored lifetime member, Science in special education at the and his wife, Dorothy, have established a TASH (formerly The Association for Per- University of Kansas. Tom moved to sons with Severe Handicaps) is an inter- California in 1978 to begin his doctoral Cover Photos: (Top, l-r) Robert, Bob Jr, national advocacy association of people Nadean, Roscoe and David. (Bottom) study in special education at the Univer- with disabilities, their family members, Kenneth and Leslie Moore other advocates and people who work Continued on page 3 in the disability field. TASH actively pro- AI I Iff, motes the full inclusion and participation of persons with disabilities in all aspects q. of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- Alf Whom Do I Contact?? --1 enue, Ste. 210, Baltimore, MD 21204 y or phone (410) 828-8274, ext. 105 or For issues of policy, chapter or committee support, or general e-mail: infogtash.org. concerns and suggestions, call:Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops, or technical assistance, MISSION STATEMENT call:Denise Marshall, Director of Training and Technical Assistance, at (410) 828-TASH, Ext. 103, e-mail:[email protected]
For questions about the 1998 Annual TASH Conference, call:Kelly Nelson, OTASH Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Stretching the boundaries of what is possible For questions about membership, conference registration or exhibiting call: Building communities in which no one is Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] segregated and everyone belongs; For information on government affairs or fundraising/development, call:Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Forging new alliances that embrace diversity; e-mail:[email protected] Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, news- letter submissions or advertising, or publication sales, call:Priscilla Newton, Eradicating injustices and inequities; Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, e-mail:[email protected] Supporting research and disseminating knowledge and information; For information on the Journal (JASH), call:Lori Goetz, Editor-in-Chief, at (415) 338-6230, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable.Call (410) ^V 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 13 2 TASH Newsletter, May 1998 FROM THE EXECUTIVE DIRECTOR
From The Executive Director Education at the University of California, continue TASH's positive acknowledge- Continued on page 2 Santa Barbara, in 1983, where he ad- ment of contributions to the inclusion of vanced quickly through the faculty ranks. all persons in society" His promotion to full professor was To be eligible for the Award the approved only a few days before his author(s)' manuscript must have been death. published in the Journal during the two During his distinguished professorial years prior to the conference. The senior career, he wrote over fifty scholarly author must agree to be present at the articles, many of them with his collabora- annual TASH Conference and to present tor and wife, Catherine Breen. Tom's the contents of the paper as a conference research was significant for its theoretical session. importance, its methodological rigor, and Nominations for the award can be its practical application. His work made by any current TASH member (see focused on the social skills learning pages 6-7 for the nomination form). and changing the attitudes of students Members making nominations will be without disabilities toward their disabled asked to submit a letter addressing the peers. He concentrated on ways to study's significance, scientific merit, and facilitate social and communication skills, the importance of its contribution to the particularly as those skills could be used disability field. Self-nominations are to strengthen enduring friendships among welcome. Thomas G. Haring persons with significant disabilities and The selection of the manuscript for ' their non-disabled peers. He studied the the award will be made by a committee dynamics of friendships, how they were consisting of Norris Haring, the current formed, how they were maintained, and Editor of JASH, and the current Associate "The purposes of how already established friendship Editors of JASH. In addition to nomina- The Thomas G. Haring Award networks could be applied to include tions received from the membership, are to promote research people with disabilities. Committee members will be invited to and scholarly activity in the In his final year he developed an nominate published studies for the award. important model of social integration that The Selection Committee can, at its field of significant disabilities, recognized the importance that both discretion, determine additional criteria to recognize the achievements physical and social context exert on for the award that may vary year-to-year. of researchers within the challenging behavior, as well as on pro- For example, the Selection Committee can social behavior. The high regard for Tom's announce particular interest in studies on field and to continue work led to his being asked to serve on curriculum modification or supports for TASH's positive the board of editors of three prestigious families of young children. The criteria acknowledgement of journals: the Journal of the Association for will be published in the Spring and can be contributions to the inclusion Persons with Severe Handicaps, the used to encourage the submission of Journal of Applied Behavior Analysis, and research in content areas of particular of all persons in society." the Journal of Behavioral Education. interest. This year the award will be Norrie Haring During his last months of life he was granted to a study that significantly given the Distinguished Professional contributes to the understanding of A A A Award from TASH, an award he prized educational and community inclusion in very highly. general. sity of California, Berkeley, and San In Norrie Haring's words, "the TASH extends its sincere thanks to Francisco State University, and was purposes of The Thomas G. Haring Award Norrie and Dorothy Haring for their awarded a Ph.D. with honors in special are to promote research and scholarly efforts in developing the Thomas G. education and educational psychology in activity in the field of significant disabili- Haring Memorial Award and for their 1983. He was hired as an assistant ties, to recognize the achievements of generous funding of this award. professor in the graduate School of researchers within the field and to f,S
PAGE 313 3 TASH Newsletter, May 1998 MAY 1998
International TASH Conference December 2-5, 1998 Headquarter Hotel - Sheraton Seattle Hotel and TowersFor Reservations call 800-325-3535 or 206-621-9000 Workshops and Exhibits-Washington State Convention and Trade Center
(Pre-Conference Workshops & Opening Reception are on December 2, 1998)
The 1998 TASH Conference is in Seattle, the city Conference Information where TASH was conceived over 20 years ago. No Wednesday, December 2, 1998 organization existed prior to the formation of TASH that (Pre-Conference Activities) believed that people with significant disabilities were capable and deserving of being fully participating citizens. Choose from 15-18 different full day pre-confer- TASH became the leading organization advocating for the ence workshops on cutting edge issues affecting inclusion of people with disabilities. Now, as then, TASH individuals with disabilities and their families. continues to be at the forefront ofthe fight for justice, (Registration is in addition to fidl conference) : Opening Reception in the TASH Exhibit Hall equality, and the empowerment for individuals with (All conference attendees welcome) disabilities and their families. Join us at the TASH Annual Conference, where Thursday, December 3, 1998 through the best of hearts and minds in the disability movement Saturday, December 5, 1998 gather to provide and share cutting-edge information that Choose from over 25 breakout sessions each hour, inspires advocates, parents, and professionals alike to exhibits, poster sessions, roundtable discussions, understand, support, and creatively move forward toward creative and performing arts, special interest group inclusive lives for all. meetings, plenary sessions, and much more! Topics on Inclusion is about all of us, with our different points issues affecting the full spectrum of inclusive services of view, values, self-interests, and experiences. Come, for children and adults with disabilities will be presented. spend time with over 2400 others who believe in the For more information on the conference values you do, and capitalize on the synergy that is TASH. call 1-800-482-TASH or 410-828-8274 and visit our Create inclusive futures - together! website at www.tash.org. Lookfor more information and the registration form in the next Newsletter issue.
.13q
PAGE 4 TASH Newsletter, May 1998 TASH AWARDS
'ENE ONCE AGAPE `1110 BURET 'TAME AWARE) kriDIPItICAT:110H62
ach year at the annual conference, TASH ilooas A\llllDU11110 EATIDERI AIMED confers a series of awards that recognize This $500.00 cash award will be presented to a doctoral individuals, teams, organizations, or media student enrolled in a program in education or a related which exemplify the spirit and mission of TASH. field and who demonstrates potential for leadership in Submit your application (found on the following two teaching, scholarship, and service on behalf of people with pages) today! significant disabilities. The individual needs to have demonstrated a continuing desire in working in partnership Who comes to mind when you think of someone who with people with disabilities in accordance with has made a positive difference in the lives of persons TASH values. with significant disabilities over the past year? 11 MG MEDIU AWARDS Have you recently seen an outstanding media piece that embodies the values of TASH? This award is presented to honor presentations in either print or film, which best promote the inclusion of people Do you know of a student enrolled in a doctoral with significant disabilities in all aspects of community program in education or a related field who demon- life, and which have reached a national audience. Criteria strates leadership, advocacy, and commitment to efforts for selection include; high quality, accuracy of informa- of individuals with disabilities? tion, meaningfulness of subject matter, potential for consciousness-raising, and promotion of quality of life for persons with disabilities. Is there a team of people working together to improve the quality of life for a person(s) with disabilities? 11 MB COLR.ABOI 'HON AWARD This is your chance to honor such accomplishments with official recognition. Please take the time to TASK will recognize collaborative teams of persons with submit an application. Awards will be conferred as disabilities, family members, professionals, community members and/or peers, who are engaged in projects and part of the TASH Annual Conference to be held in advocacy efforts to ensure the Seattle, December 2-5, 1998. Award applications will implementation of TASH values in their local be accepted through August 31, 1998. Please be community, or in a way that has affected others at a local, sure to indicate for which award you are applying state, regional, and/or national level. The work of the on the application, and submit all required docu- recipients of this award should serve as an inspiration for ments or information requested for that award. other community efforts, and demonstrate creativity in supporting an individual or individuals to realize the goals of self-empowerment and full community inclusion. P.M Poen= AIDIPIIMACEILEO AWARD HMS T A CHAS G. HARING MARIO RFAIKARC This award is presented to the person whose contributions have served to advance non-aversive This is the inaugural year for the Haring Award. The intervention with persons who display challenging award is presented to promote research and scholarly behaviors; have demonstrated outstanding efforts activity in the field of significant disabilities. The award leading to the understanding of challenging behavior; will be presented to the author(s) of a study of particular and whose actions have advanced the use of non-aversive significance that was published in JASH within the two interventions and progress in the use of positive years prior to the annual conference.The study will have behavioral supports. demonstrated scientific merit, and have made an important contribution to the disability field.
3-5 PAGE51 TASH Newsletter, May 1998 AWARD APPLICATION 1998 TASH AWARD APPLICATION - Applications due August 31, 1998-
How to Apply: Person or Team Being Nominated: (1)Complete this application formfront and back- as fully as possible. Name of the Individual:
(2) Attach a brief narrative discussing why the nomination is Street Address: being made. Please see the other side of this form for a list of supporting information and materials that must be submitted City: for the particular award you choose below. State/Province: Country: 3) Please indicate for which award you are applying.Check Zip/Postal Code: only one award. Daytime Telephone: ( ) . Alice H. Hayden Award Evening Telephone: ( ) O Collaboration Award Is this individual(s) a member of TASFI? O Media Award 0 Yes 0 No O Positive Approaches Award Name of team members (more room on reverse side) O The Thomas G. Haring Award for Research Street Address: (4) To be considered, the original completed application and supporting materials must be received in the TASH City: central office no later than August 3 I,1998. Send to: State/Province: Country: Awards Committee Zip/Postal Code: TASH 29 West Susquehanna Avenue Daytime Telephone: ( ) Suite 210 Baltimore, MD 21204 Evening Telephone: ( )
Is this individual(s) a member of TASH? 0 Yes 0 No
Person Making the Nomination: Name: Relationship to the team/person: Street Address: City: State/Province: Country Zip/Postal Code: Daytime Telephone: () Evening Telephone: FAX:( ) E-mail: 136 PAGE 6 TASH Newsletter, May 1998 AWARD APPLICATION
Please provide as much information as possible about the MEDIA CONTACTS persons who are part of this team. Please use additional Please provide on a separate sheet of paper, the names and addresses paper if necessary. of local radio, television, or newspaper outlets that would be inter- ested in covering the presentation of the award. Name of Team Member: AWAIU) APPLICATION REQUIREMENTS Collaboration Award: Organization (if applicable): 1. Attach a narrative which describes: a) the goal of the team; b) the interaction of the team members; c) the roles of the individual himself/herself, the family, peers of the individual, Street Address: and/or people who provide paid support; d) the outcome of the team's efforts; and e) a brief narrative about the individual or City: individuals who benefited from the collaboration. 2. Attach at least three (3) letters which support the State/Province: Country: nomination. These letters should present specific anecdotal information or data which conveys an accurate picture of how Zip/Postal Code: this collaborative effort met the criteria for the award. Daytime Telephone: ( ) Positive Approaches Award: 1. Attach a description of the nominee's background in the area Evening Telephone: ( ) of severe disabilities. Please include a resume/curriculum vitae if appropriate. 2. Attach evidence of contributions related to positive behavioral Is this individual(s) a member of TASH? support. 0 Yes 0 No 3. Attach three (3) separate one page letters in support of the nom ination. *** Alice H. Hayden Award: I. Attach a curriculum vitae outlining your history of: Name of Team Member: a) higher education (including major1 minor, degree, date of completion); b) employment (including dates, duties, name of supervisor); c) research and publications. Organization (if applicable): 2. Also attach 500-1000 word essay which describes: a) your current work on behalf of individuals with severe Street Address: disabilities; b) your educational and professional objectives. 3. Attach at least three (3) letters which support the nomination. City: These letters should be from professors who are familiar with your qualifications. The letters should present specific data or State/Province: Country: anecdotal information which convey an accurate picture of your current achievements and potential for significant contributions Zip/Postal Code: to the field.
Daytime Telephone: ( ) Media Award: 1. Please provide a brief description of the project, including the Evening Telephone: ( ) medium used (radio, television, newspaper, magazine): 2. If the nomination is in the film category, please indicate the length of the video in minutes. 3. Attach two copies of the nominee's work, or of the specific Is this individual(s) a member of TASH? project being nominated. If the nomination is in the print 0 Yes 0 No category, the submission must be neat and legible. If the *** nomination is in the film category, two video copies (VHS 1/2") must accompany the nomination. The submitted work must be sufficient to demonstrate that the work meets or exceeds the Name of Team Member: criteria for the award. Thomas G. Haring Award for Research: Organization (if applicable): I. To be eligible for the award, the authors' manuscript must have been published in JASH within the two year period prior to the Street Address: conference. The senior author must agree to be present at the upcoming conference, and to present the contents of the paper City: as a conference session. 2. To make a nomination, submit a letter which references the State/Province: Country: article, and addresses the study's significance, scientific merit, and the importance of its contribution to the disability field. Zip/Postal Code: Permission to show video submittals: Daytime Telephone: ( ) If the nomination is in the film category, please complete and sign the following to hereby grant permission to TASH to show: Evening Telephone: ( ) (Title) Is this individual(s) a member of TASH? 0 Yes 0 No as produced by for, but not restricted to, promotion of the TASH Media Awards *** and the 1998 Annual Conference. Similarly, as it applies to the promotion of the TASH Awards and the 1998 TASH Conference, the producers waive any monetary compensation . Signature: 1 3 ST COPYAVAILABLE PAGE 7 TASH Newsletter, May 1998 SENIOR FAMILY CAREGIVER SUPPORT PROJECT he
SeniorCAREGIVER SUPPORT Family PROJECT
BY NANCY MELTZER AND SALLY SEHMSDORF 11
Across the nation, thousands of older Most families are caring for their loved ones family-support with developmental disabilities at home. While baby boomers age, benefits are cut, policies, programs, and waiting lists grow, the number of and legislation such families increases every year. Yet, until recently little attention has been have served paid to older caregivers. Most family- families of children support policies, programs, and legisla- and adolescents or sok' tion have served families of children and Front row: Robert (left) Nadean and David. Back adolescents or younger adults, and make younger adults, and row: Bob Jr and Uncle Roscoe no provision for the caregivers' retirement make no provision years, incapacitation, and eventual death. day we visited, but she did manage to call In the state of Washington, change is for the caregivers' and say hello. under way. Last year, the state family retirement years, From birth, David was not only support program provided money for nurtured by his parents but surrounded The Arc-King County's Statewide Senior incapacitation, and by the love and support of the rest of his Family Initiative, which surveyed the eventual death. family Bob Jr. fondly recalls early times current situations and long-term plans of with his younger brother, and describes nearly 100 senior families. This year, the his fears for him, based on the doctor's funds support Pathways to Future incorrect prediction that David would die Planning, which develops and distributes extended family. Both families realize now, young. Uncle Roscoe's home has always packets on long-term planning. For the as they age, they need to address the long- been open to David. David took his first past two years, the Division of Develop- term support needs of their adult children. steps for Robert's parents, who lived for mental Disabilities has enabled the Senior Yet, there are still many unknowns in the several years in a small house behind Family Caregiver Support Project at The future of David, now in his late thirties, their son's home. During an extended Arc-King County to assist older King and fifty-four year old Marie. visit, Nadean's mother and David spent County families. Project components hours on the front porch, talking together include an advisory committee (with at THE STORY OF DAVID'S FAMILY in their own special language. least 50% senior families); training, Robert and Nadean moved to Seattle As the primary caregiver for many advocacy and referral services; long-term with their baby daughter, Mary, in the years, Nadean recognizes that her family planning assistance for a pilot group of late fifties. The young African-American made it possible to do more with her life five senior families; and technical couple wanted to escape the racism of the than just be David's mom. "If it weren't assistance and training for community South, and chose Seattle as a better place for the support of my immediate family, I and government. to raise their children. Robert's brother, wouldn't have been able to do anything." To better understand the issues, Roscoe, had already adopted Seattle as A strong neighborhood network concerns, and obstacles facing older his home and encouraged them to join further bolstered the family People caregivers, Senior Family Project Coordi- him. Soon after their move, Bob Jr. was looked out for one another, played nator Nancy Meltzer and Seattle-based born, followed in 1959 by David. together. There were picnics, barbecues, TASH project staff member Sally Robert found a teaching job in the and tree houses. Bob Jr. recalls that the Sehmsdorf visited two families to gain Seattle school system, and before David kids on the block were close-knit and insight into how these families deal with was born, he and Nadean moved into the that David was part of the group. the issues of aging caregivers. Both sets home where they and David still live. We Once during David's middle school of parents rejected the standard advice to met with Robert, Nadean, Bob Jr., years, Bob and Nadean decided to try institutionalize their child and drew on a Roscoe, and David to hear their story. placing David in an institution, at that blend of private and public resources, Robert and Nadean's daughter, Mary, was time the only out-of-home choice. But particularly the precious resource of an unable to leave work to join us on the continued on page 9 PAGE 8 13 b TASH Newsletter, May 1998 SENIOR FAMILY CAREGIVER SUPPORT PROJECT
The Senior Family Caregiver When Robert and Nadean can no longer What is next for David's family? Support Project offer support and assistance to David, While they have built a foundation of continued from page 8 Robert would like a family member or their vision of David's future, much their decision was quickly reversed. some other nurturing person to move in. planning remains. A person-centered Robert recalls that after dropping David Other people would be hired to assist planning process could offer much to off, the family drove to Mt. Rainier, where David, as needed. Bob Jr. and Mary forward their dream. In the coming year, Bob Jr. and Mary were sorry David wasn't would become co-guardians. Roscoe Sally Sehmsdorf and Nancy Meltzer hope there to enjoy the deer. Roscoe cannot would manage David's trust fund, with a to meet regularly with the family and to forget the beds "shaped like cages." niece as stand-by offer them this kind of planning assis- Within a month, David was back with his Robert concludes, "I am looking at tance. The following are suggested areas family how we can keep a family together. to explore in subsequent meetings. Today, Nadean, Robert, and David Family means a lot to me." live a good life in the family home. Bob 1. What needs to happen in David's family for them to move ahead in Jr., Mary Roscoe and most of Roscoe's L-J children live close by To his father, planning for his future? David is a loved companion. They go camping together. Sometimes Robert Build a profile of David, what is wonders if he is "selfish" because he does important to him, what he enjoys not want his son to leave home. doing, new things he would David makes important contribu- like to try tions to the household, washing and Create a vision of David's future life vacuuming floors, storing groceries, in the family home. folding laundry, and collecting mail. He Expand the family and informal learned many of these skills at a local network to participate in the community-college food service program. planning process. There, David had his first real job, and he Explore planning a family owned business that would employ David. relished the experience. But the program David (left) and his brother, Bob Jr was downsized and David was let go. The loss of the job has been difficult Other family members express 2.What kind of assistance and for David and his family When they different views. Bob Jr. says, "I have resources would help the family drive by the college, David points to "his already decided [David] is going to stay move forward in the planning school." In retrospect, Robert wonders if with me even if they (Robert and process? the agency adequately supported David. Nadean) don't want him to." He adds, Nadean regrets not aggressively pursuing "After a while, they won't be able to say technical assistance to assist them in the issue, as she would have done in the no, anyway" Roscoe appreciates being the planning process (e.g. keeping past. Yet, the couple agree that David's included in the planning process, seeing minutes, facilitation of meetings, termination came during a very difficult it as a way to clarify his role as "extended enlisting the support of others); time for them, just as they began to face family" invite other important people in many of the problems common to aging Robert proposes yet another solu- David's life to help plan for his future families. The death of Nadean's brother, tion. Why not invest in a family business life in the family home; her mother's declining health, and health that would employ David? This would expertise in networking in the problems of her own all claimed her provide the "permanency" and "trust" informal community (e.g. explore attention and diverted it from David. which are hard to come by in the the potential of business and work Since then, the family has begun to community opportunities); think about what David will need when Reflecting on forty years of access to legal and financial planning they are no longer here. Robert notes, caregiving, Nadean and Robert encourage to support their vision of the future; "You start to think down the line and other families to explore community and there are a lot of 'what ifs' developing in resources and to decide what is best for connections to other families with your mind." They have explored their family They also recognize as similar interests (e.g. long-term resources and visited group homes in the families' age, many need extra assistance. supports in the family home, develop- community, finding some excellent and "Without it, they are doomed." Concern- ing family business opportunities). some very poor. ing the future, Robert advises younger After much consideration, Robert has families "to look down the road a bit 3.What is the role of government in decided it would be best for David to stay because it is going to face them." Nadean supporting David and his family in the family home, the only home he has adds that it is hard for younger families to and other families with similar ever known. "He would have his house have that vision "because they have so needs? and his room; it would be personal." much to deal with in the beginning." continued on page 10
PAGE 9 TASH Newsletter, May 1998 BEST CPY MOW 132 SENIOR FAMILY CAREGIVER SUPPORT PROJECT
The Senior Family Caregiver and Lorene did not take that advice. Support Project They moved to Indiana, where Marie continued from page 9 entered kindergarten. School officials V=^0 Sponsor and fund trainings, advo- invited a famous physician from London cacy, and planning services for and an expert in disability, to examine families. Marie. He said, "Marie will never learn to Support innovative approaches to read or write." Little did the expert know using public funds to encourage that Lorene had already taught Marie to family-driven projects. read. Marie later successfully passed Create support systems that sustain other typical milestones, including multi-generational family involve- learning to ride a bike. ment. In 1951, the family moved to Washington where there were reported to Lorene, Dan, Suzy and Angie THE STORY OF MARIE'S FAMILY be excellent programs for people with Seattle.Victor and Lorene were dissatis- Tonight is Helen Marie's first night in disabilities. Suzy believes that Marie did fied with Hawaii's services for people with her new home. Her older sister, Suzy, not learn much in these programs. She disabilities. Victor was particularly drove her there this morning. In the car, went to three "special" schools until she offended by the congregation of people Marie sang enthusiastically "I'm moving, was thirteen. At that age, a child deemed with disabilities, and saddened by the I'm moving." After more than fifty years "vocationally able" was referred for sight of people paraded throughout the with her parents, she has entered an adult additional training. Marie was evaluated community in large groups, holding family home. Her mother, Lorene, her as neither "vocationally able" nor "edu- hands. Also, people from the system told sister, Suzy, and her nephew, Dan, and his cable," and the recommendation was "no him and Lorene, "You are getting older wife, Angie, have gathered at Lorene's further schooling." In June of 1957, and you should be putting her some- home to tell us Marie's story and the Marie left school for good. Her parents place." Victor didn't want to put Marie in events that led up to this momentous were told, "Just keep her home." a "place." But he realized that he and his move. Suzy's older children, Vicky and Still, Marie at thirteen was a typical wife were growing older, and that Lorene Ed, are unable to attend, but their teenager. She adored Eddie Fisher, was could not care for Marie alone. messages of love and support are very very good at recognizing talent on the Marie's family, no less than David's, much with the family this evening. Arthur Godfrey show, and loved classical had to deal with bad times as well as good. music and dancing. She was neat and Marie's world was limited. She had no organized and always kept herself busy companions her own age, only her Mom As she grew older, she had the opportu- and Dad and their friends. Suzy felt that nity to take road trips up and down the Marie was frustrated at the limitations of coast with her parents. Marie and her her lifestyle and the dependence imposed dad shared a love for fine cars, and Marie by aging parents. Over the last ten years, could recognize and name all the Marie was increasingly angry and self- different makes. abusive. Suzy acknowledged to her As children, Marie and Suzy had parents that Marie could not live with her. always been close. During the mid '60s, That was a difficult message for Victor. Suzy married and began a family of her Victor wanted Marie to remain in the own, and Marie, then in her twenties, family home. was included in Suzy's new life. Marie Victor died in 1997. Marie under- saw a house being built, children being stood that he was gravely ill. She Marie and her dog, Zoe, in their new home reared, lots of pets, especially dogs. She remarked during his final days that shared holidays with extended family, "Victor" was gone, "all" gone, and then Marie was born in Wisconsin in meeting and enjoying new people. She named family, friends, and animals that 1944, near the end of World War II. grew close to all three of Suzy's children, had died. After her dad died, Marie Lorene tells us that physicians were Vicky, Ed, and Dan. grieved. Her final good-bye to the father experimenting with a new birthing In the 1980s, Victor, Lorene, and she loved came one morning as she method, which involved delaying the Marie moved to Hawaii. Marie's twelve- looked down at his car and said, "Good delivery as long as possible. Marie was year-old nephew, Dan, came to visit. Dan bye little Fleetwood, it's been nice." born cold to the touch and, as her family and Marie spent a lot of time together In the time since Victor died, Lorene, later came to realize, with a disability and Marie, who had always had an Suzy, Dan, and Angie have struggled with Medical professionals had little to amazing memory, shared family history the challenge of Marie's future. After offer. They advised placing Marie in an with him. Today, Dan believes those speaking with local agencies, they institution, telling Lorene "You'll have visits cemented their relationship. realized the only available option was an other children." Victor, Marie's father, The family eventually returned to continued on page 11
PAGE 10 140 TASH Newsletter, May 1998 SENIOR FAMILY CAREGIVER SUPPORT PROJECT
The Senior Family Caregiver lifestyles in Adult Family Homes Support Project through adequate funding, training, continued from page 10 "What will and technical assistance. happen to my Develop policies and procedures that Adult Family Home. They've found one allow private (e.g. trust) resources to that looks promising. family member blend with public (e.g. Medicaid) What do they hope for Marie's when I am no funds to provide a comprehensive future? They hope that at fifty-four, package of supports and lifestyle Marie will finally become her own longer available?" opportunities. person. They hope she will meet new people, have more choices, and gain We have learned much from our more control over her life. They hope Include the Adult Family Home in community's older families. The majority she will have more activities to stimulate the planning process. share one overwhelming question: "What her, relearn to read and write, and have will happen to my family member when I the chance to travel. They envision 2.What kind of assistance and re- am no longer available?" But few have visiting her weekly in her new home. sources would help the family move acted on this concern. Nor have most Suzy is hopeful that the adult family forward in the planning process? caregiving families addressed their own home will offer her sister a good life. technical assistance to assist them in long-term needs, so closely tied to those They have dogs, have offered to take the planning process (e.g. keeping of their children. In order to effectively Marie on trips, and greeted her this minutes, facilitation of meetings, plan for the "day after," families must face morning with a big sign that read enlisting the assistance of others); their deepest fear: that of their own "Welcome Home Marie." If all goes well, access to experts to vigilantly ensure mortality. They must prepare themselves Marie will enjoy her new home, and the quality of life for Marie in the Adult to look beyond the safe confines of their home will live up to its promise to Family Home, including enhancing own households, reach out to others for provide more than just its contractual opportunities for community involve- support, and trust in the unknown to obligations of board and care. ment and personal self-development; carry out their wishes. It is a formidable What's next for Marie and her networking with other families task that awaits all families in the family? The death of a parent compelled whose loved ones reside in Adult developmental disability community. Marie's family to make an initial long- Family Homes; term care decision without the benefit of opportunities to explore alternative liv- Project coordinator Nancy Meltzer would planning. They still have hopes and ing arrangements in the community; like to hear from others who share an interest dreams for Marie's future. There remains assistance in exploring work and in outreach to older families.She can be ample opportunity to enhance the leisure time pursuits in the commu- reached at: The Arc-King County; 10550 nity (The family needs to learn about Lake City Way NE, Suite A; Seattle, WA current and future quality of Marie's life. 98125; (206) 364-6544; fax (206) 364- Using a person-centered planning pro- the possibilities and Marie needs 8140; e-mail [email protected]. cess, Sally and Nancy hope to continue to opportunities to personally experi- meet and work with Marie and her family ence the options.); and The following are suggested areas to explore consultation on ways private funds in subsequent meetings. can augment public resources (e.g. trusts can purchase supports 1.What needs to happen in Marie's unavailable in the residential setting). family for them to move ahead in planning for her future? 3.What is the role of government in Provide time and support for Marie supporting Marie and her family and to settle into her new home. other families with similar needs? Get to know Marie and learn about Fund and sponsor training, advo- what she would like to experience in cacy, and planning services to her new life (including finding ways families (e.g. benefits, financial, legal, to support the Marie who enjoyed and residential). reading, riding a bike, following the Build in family connections and different automobile models, involvement subsequent to out-of- traveling). home moves. Develop a lifestyle plan to address Offer intensive in-home supports to Marie's interests and goals in her new at-risk families (e.g. those experienc- life in the community. ing loss and grieving) to prevent Sustain the multi-generational involve- precipitous placement decisions. ment of the family in planning. Support the development of positive
PAGE 11 141 TASH Newsletter, May 1998 kPATCnP11 AVAIABLE IN MEMORY OF ...
does not begin to adequately describe his In addition to his wife, Paula, Dick is In Memory Of... contributions, and achievements. survived by two daughters, a son, and Richard Lepore was a resident of three grandchildren. Also surviving Mr. RICHARD Eliot, Maine, and a long time health Lepore are his mother, a half brother, and administrator for both Maine and New a half sister. LEPORE Hampshire. Dick struggled with leukemia Accomplishments included employ- while continuing his affiliation with the ment as deputy director for residential On April24, Institute on Disability at the University of services in Sacramento, California, and 1998,people New Hampshire. He was a veteran of the assistant professor in the Human Services with disabilities, Air Force and was an instrument rated Department, in Bangor, Maine. Dick also their families, and private pilot. Dick earned a Master's held positions in the field of developmen- those working degree in Counseling Psychology from the tal services in Waltham and Taunton, toward positive University of Alaska at Anchorage, and Massachusetts; and served as a teacher, change lost a became well-known in New England for presenter, consultant, and policy advisor great leader. A his leadership in developing systems of in the United States, Canada, and En- diplomat, activist, support for people with disabilities and gland. visionary their families. Mr. Lepore served as In September1996,Dick received the politician, and teacher, Richard Lepore Director of the Elizabeth Levinson Center Chairperson's Award for Distinguished worked vigilantly on behalf of people with in Bangor, Maine, and as state director of Service by the President's Committee on disabilities for more than25years. He the developmental disabilities systems in Mental Retardation. believed strongly in the ability of commu- both New Hampshire and Florida. He is Donations may be made to the nities to welcome and support all people perhaps best known for his role in the "Richard Lepore Memorial Fund," to and questioned the capacity of systems closing of Laconia State School in New further the work of inclusion of people and agencies to provide long-term Hampshire, allowing New Hampshire to with disabilities into community life. assistance. Dick deeply touched the lives become the first state in the United States Donations may be sent in care of: Kim of hundreds of people, and leaves a legacy to operate a system of services without Frederic-Klein,13Maplewood Drive, that will endure and energize us long into being dependent on a large, congregate, Barrington, New Hampshire,03825. the future. state facility He is also well-known for TASH gratefully acknowledges the assistance of With characteristic dignity grace, and establishing a state-wide system of Jay Klein in contributing biographical courage, Dick waged a 10 year battle with independent support coordination for information and personal insightsfor this article. leukemia. Several months prior to his people with developmental disabilities in death, he wrote the following obituary It Florida.
VANDERBILT UNIVERSITY PEABODY COLLEGE OF EDUCATION AND HUMAN DEVELOPMENT Assistant Professor Visual Disabilities
The Department of Special Education, Peabody College of Vanderbilt University, is seeking an assistant professor with exper- tise in the area of Visual Disabilities for a three-year appointment beginning August 1998. This is a non-tenure track position with the possibility of conversion to tenure track after the initial three-year term. Teaching responsibilities include four courses per year, primarily at the masters level. Student advisement and practicum supervision, as well as participation in the development of the program in visual disabilities, are expected. Qualifications include doctorate in special education or a related field; college teaching experience in special education and visual disabilities; excellent instructional skills, including enthusiasm for teaching, supervising, and advising students; teaching and service delivery experience in visual disabilities; experience and interest in program development and teacher education; and evidence of scholarly productivity and research. Preference will be given to candidates with experience in securing external funds for research, training, and program development and to candidates with expertise in orientation and mobility, technology, and/or multiple disabilities. Applications for this position will be reviewed beginning May 1, 1998. Please send a letter of application, vita, reprints of two articles, and the names of three references to Dr. Anne Corn, Chair, Vision Search Committee; Department of Special Education; Box 328 GPC; Vanderbilt University, Nashville, TN 37203. Inquiries may be directed to Dr Corn at 615-322-2249, or e-mail [email protected] Vanderbilt is an equal opportu- nity, affirmative action employer with a strong institutional commitment to diversity in all areas. The university actively seeks applications from women, minorities, and individuals with disabilities.
PAGE 12 TASH Newsletter, May 1998 FUTURE PLANNING Future Planning FOR YOUR CHILD Takes More ThanaWill
Because of medical advances, more and other self care skills early in life. children with disabilities are living This will help to ensure your child's longer. Many adults with Down If you are the parent success in education, employment and syndrome, for example, are living long other areas of their lives with or of a child with a disability, enough to retire and collect Social without you. Security The difficult part of this have you considered what wonderful longevity is that in many arrangements you've made Move to the future cases, children outlive their caretaker for your child in the event that Next, parents should assess what the parents. For any child, the death of a child will need in a future that does not parent is a tragic event; for a child with a both you and your spouse include them. Whenever possible, disability, the death of a parent-caregiver die before your child? include the child in the planning process can be especially traumatic. and ask for his or her input. If you are the parent of a child with a Besides guardianship and financial disability, have you considered what considerations, plans for a minor child arrangements you've made for your child existing assets, abilities, and needs would include arrangements for their el- in the event that both you and your identifying and assessing the child's: ementary, high school, and college educa- spouse die before your child? Many tion or other post high school training. parents of children with disabilities are Ability to be physically and emotion- Address questions that cover every even- making detailed plans to cover this ally independent tuality that the child will be faced with af- eventuality For children with disabilities, ter your death. These include: a plan of this kind will ensure an emo- Available financial support and tionally and financially secure future emotional supports both inside What is needed to prepare the child and a smoother transition to a life and outside the family emotionally for the eventuality of the without their parents. parents' death? Social life Where to begin Who will the child depend upon for This kind of comprehensive planning Use of community supports and emotional and physical support after should begin when your child is first services the parents are gone? born and should be reviewed and changed at different stages in the child's Current education needs and any What self-care, decision-making and life. "Future planning is an ongoing, costs involved life skills does the child need to learn dynamic process," writes Rick Berkobian to live successfully? in his book, A Family Handbook on Future Employment status and the existing Planning. Berkobian, assistant director of supports associated with it research and project planning for the Arc in Houston, Texas, established the Arc's Transportation needs and how those Future planning not only future planning program. Future needs are met helps your child, but allows planning not only helps your child, but allows you to feel more secure about your Eligibility for government or other you to feel more secure child's future after you are gone. financial programs about your child's future after you are gone. Start with the present Level of self-care and other skills A thorough future planning program encompasses all aspects of your child's If possible, promote self-confidence + life.First, you should look at the child's and teach your child decision-making Continued on page 14 PAGE 13 TASH Newsletter, May 1998 enPVAMIABLE 14 3 FUTURE PLANNING
needs one. Discuss with the prospective will that incorporates all areas of the guardian your desires for your child's future plan. Parents should assess future, and ensure that your guardian is Planning for the disbursement of willing to carry out these desires and assets after your death is something that what the child will need accept full responsibility for guardianship. every family should do. Understanding in a future that does not Review your future plan with an eye the implications for Social Security, include them. Whenever to how much responsibility the child can wages, living arrangements and other assume for him or herself. The more questions of future income takes special- possible, include the child independence the child is given, the ized planning. The Arc and others in the planning process and better it will be for his or her well-being. provide helpful written materials to cover ask for his or her input. If money expenditures or housing needs these questions. Consulting a financial are beyond the potential earning power planner and an attorney are advisable for of the child, then a trust attorney and tax this part of the planning. expert should be consulted to see how a Planning the living arrangements for part of your current funds can be set the child is another significant decision. What will the child's housing needs be? aside and used laterwithout jeopardiz- In addition to providing a place where ing the child's access to benefits from the child can live safely and comfortably, Who will the child live with? other sources. Through insurance, trusts, parents must consider the ramifications and investments, a certified financial of placing property and its upkeep in a What can be done to help the child planner can ensure that sufficient funds trust. And, of course, the most important make new circles of friends and are accumulated to cover all of your part of the equation is the emotional helpers as time goes on? child's expenses after your death. well-being of the child, and your assur- For your son or daughter who is an ance that the child has the ability to For young adults, what plans are adult with disabilities, the family needs to continue to enjoy life. needed to ensure a successful plan for a structure that draws on the Probably the most difficult part of transition from school to work? community for emotional support for the future planning is realizing that the adult. This is becoming more and more person doing the planning will be out of What additional education or necessary as extended and nuclear the picture. If you provide your child training will the child need? families in today's society become smaller, with emotional, coping, and decision- with only one or even no siblings for the making skills, and a circle of community What costs will the education and child to rely upon after his or her parents and family supports, then develop plans training entail? have died. The more religious, social and for your child's financial, housing, and recreational activities your child is other needs, you will have the assurance What will the child's transportation involved in, the better. With these that your child will succeed after you are needs be? activities, your child can develop friend- gone. ships and increase the base for his or her How much responsibility can the emotional support. Reprinted with permission from One Step child assume? Ahead, Volume 4, May 1997 0 Evan Kemp Associates, Inc., 9151 Hampton Pulling the pieces together Overlook, Capitol Heights, MD 20743. What financial supports will the If you die without preparing a will, child have from life insurance, this could jeopardize the implementation savings, trusts, and so on? of your carefully crafted future plan. For more information about future After the future plan is complete, parents planning, contact: What government financial supports should consult an attorney to draw up a will be available for the child? The Arc National Headquarters 500 E. Border St., S-300 What medical care will the child be Arlington, TX 76010 eligible for? 817-261-6003 817-277-0553 (TTY) What will an adult son or daughter Probably the most do when he or she retires from the difficult part of future Clearinghouse on Aging and Develop- world of work? planning is realizing that the mental Disabilities, The University of Illinois at Chicago, 1640 W Roosevelt What will the child's social life be like? person doing the planning will Rd., Chicago, IL 60608-6904, be out of the picture. 800-996-8845, 800-526-9844 (TTY) A trusted guardian should be desig- nated for a minor child, or an adult who + 144 PAGE 14 TASH Newsletter, May 1998 MAY 1998
74 Secoad %Iowa Tfatiogai &mere/wow .54reitmegatio* Minneapolis Hilton Hotel July 10-11, 1998
The Second Annual National Conference on Self-Determination , sponsored by The National Program Office on Self-Determination, a project of The Robert Wood Johnson Foundation, will feature two full conference days with in-depth presentations and discussions around the issues critical to making the concept of self-determination a reality. Self-Determination refers to a range of efforts aimed at assisting people with disabilities and their families to choose what supports they receive, determine how they live and work in the community, and control their own funds for supports. Participants will have the opportunity to interact with leaders in the self-determi- nation movement through an extraordinary range of plenary sessions, workshops, discussion forums, luncheon and dinner presentations, poster sessions and informal networking opportunities. PROGRAM AGENDA Pre-Conference Workshops Friday, July 10, 1998 July 9, 1998 7:30-8:30 AM Registration 8:30-10:00 AM Opening General Session 8:00 AM - 5:00 PM 10:45 -12:15 PM Concurrent Breakout Sessions 12:15-1:30 PM Lunch on Your Own Common Vision: Building 1:30 - 5:00 PM Concurrent Breakout Sessions Knowledge and Leadership from the Inside/Out 6:00 - 9:00 PM Dinner Plenary Session Sponsored by Adovocating Change Together, Inc. (ACT) (-Included with registration) Includes a performance by (Separate registration required. For information on register- Interact Center for the Visual and Performing Arts entitled ing, call ACT at 612-641-0297) "My Choice, But Your Decision."
8:00 AM - 9:00 PM Saturday, July 11,1998 8:0011:15 AM Concurrent Breakout Sessions ; Gathering of State Self-Advocacy Organizations 11:15-12:15 PM Poster Sessions Sponsored by The Collaborative on Self-Determination 12:30-1:45 PM Plenary Luncheon (Included with registration) (By Invitation Only) For information call 2:00 - 4:00 PM Closing Plenary Leanne Boyce 615-898-0025 For a complete brochure, please call the 5:00 - 9:00 PM TASH Central Office at 410-828-8274 x103.
Welcome Reception for All Participants and Please note: Dr C. Everett Koop, Former Surgeon General of the United General Registration States. will not be able to attend the conference as reported in the April issue of the TASH Newsletter
PAGE 15 145 TASH Newsletter, May 1998
43, i.aget - MAY 1998
Through the generous Para Educators and sustained donations of Life Lines our members and other in the Classroom interested individuals, TASH is able to bring its members the consistently 1998 Trainer-of-Trainer high level of quality Sessions information you have come Build in-district resources to to expect. Please help us ensure on-going paraeducator continue this work. Make a training by attending this donation to TASH today. a 3-day workshop to become TASH is a 501 (c )(3) organization. OLifeLines trainer. As such, your donation is tax-deductible. Won't you please take a moment now to complete this donation coupon and send it to us with a check? Offered by Donations of any size are greatly appreciated. And while quantities last, if you donate (.2.Coi\JSuLril\IG: $50 or more, we will rush you a Houston June 8-10 TASH tote bag as a small thank you. Las VegasSeptember 14-16 Yes, I share TASH's values and want to offer additional support. Enclosed is my check for: OrlandoSeptember 21-23 I I $100 111 $75 Fl $50
San Diego September 21-23 Fl$25 H $1o I] Other
SkokieOctober 5-6 Name
ProvidenceOctober 26-28 Address
City For more details: LiZCOMSULTINJG State P.O. Box 6049-747 Zip (Postal) Code Katy, Texas 77491-6049 Country Telephone 281-395-4978 Telephone # Fax 713-973-1271 Fax #
www.lrconsulting.com E-mail address I. PAGE 16 TASH Newsletter, May 1998 BESTCOPYAVAILABLE 1 It WAITING LIST WATCH
THE UST GROWS ON AND ON
TASH gratefully acknowledges the assistance of Sharonavis, Ph.D., Direcr, Department of Research and Program Services, Alan Abeson, Ed.D., Executive Direct7 and June C.L(oy4Intern, of The Arc of the United States, in allowing us to reprint excerpts of its November 1997 report, "A Status Report tothe Nation on People with Mental Retardation Waiting for Community Sekrices."
The Waiting List Problem Aioctdonalservices, for a total of 136,673 services needed. Some Since the early 1970s, families have been encouraged to individuals were waiting for more 'than one service which, on the keep children with disabilities at home. Many of these children, surface, gave the appearance_that the total number of people was especially younger ones, can benefit from early interventicn and somewhat fewer than the rofal number of services needed. other services, and their families can be greatly helped by family However, because ofthe data gathering mechanisms used by support services, such as respite care, counseling and cash states (see Studyitiethodology on page 18), it must be acknowl- subsidies. This is where many families start to learn about edged that th number of people waiting for community services waiting lists, as the service(s) they need or want may not be probably doe not accurately reflect the true degree of need. available to them. Ten years later, The Arc conducted a follow-up examination As these children become adults, many still live with their of the status of Voiting lists for community services reported by families. Older families especially, who have kept an adult' , states. The studY found 52,072 waiting for residential services; family member at home over the years, are astounded by the\ 64,962 waiting I'm' Jay/vocational services; and 35,862 waiting waiting list situation. Sometimes, parents in their 80s learn they for either or both, for a total of 152,896 services needed. In must wait 10 or 12 years for services! Because of long waiting addition, data was coflected on a variety of services not strictly lists for existing residential services, these senior parents and residential or day/vocational and found 65,290 people waiting. other caregivers have difficulty developing thoughtful future The total services neede by individuals in communities was plans. They are under a tremendous amount of stress and worey. 218,186 in 1997. Some parents believe that the only way off the list for their adfilt Additionally, there 4ere 5,376 people in state institutions son or daughter is for the parents to suffer serious illness or die. waiting for communitypacement in 16 states that reported such This was true for a New Jersey father whose aclfile family data. That brought the grand total of services needed to 223,562 member finally obtained a home in the Community after he in the 48 states repordng waiting list information. Finally, if all suffered a massive stroke. 53,661 people living in state institutions as of last November This suffering is not limited only to families, but also to were added to-the waiting list, the waiting list for community thousands of individuals wh6 are also waiting. Many of them services wOuld grow to 271,847. are young people leaving school only to encounter waiting lists To describe the waiting list situation as a crisis for America for employment and other day services. They are often deprived is not an exaggeration. The findings of these studies makes clear of the opportunity to experience full life in the community. As that in the 10 years since The Arc first collected this information, these people age, their families cannot help them make the the situation has grown worse. transition to a new living situation and ease the way to sfich change before the parents die. This means that when th'e crisis The National Waiting List hits, the person with mental retardation loses a parent and The number of community services requested by families moves out of the familyj-tome at the same time. a trauirtatic across the country in the 48 states that provided data was situation all around. \ 223,562. While four states reported no waiting lists, other states with no data collected acknowledge they know people need The Numbers Ap:". Astounding services. They simply have not created the capacity to collect Many thousands of individuals and families in the United the data on a statewide basis. The states falling into this category States depend on community supports and services to assist are Iowa, Ohio and West Virginia. Illinois collects data on them in meeting their needs or those of their family member. waiting lists for its family support program only Wyoming Tragically, however, in most states when these individuals and reports no adults waiting for residential or day/vocational families seek services and supports, they come face to face with programs, but 12 children are reported as waiting for services. lengthy and sometimes unending waiting lists. In 1987, The Arc of the United States conducted the first Caution is urged in interpreting the numbers of services for which ever study of waiting hsts far community-services-(Davis;21987). people are waiting in each state. While some states are quite con- That study found 63,634 individuals with mental retardation Continued on page 18 waiting for residential services and 76,039 waiting for d4/ TASH Newsletter, May 1998 BEST COPY AVAILABLE PAGE 17 1 4 "d3 WAITING LIST WATCH TABLE 1: - The List Grows On and On Community Service Needs: Waiting List Continued from page 17 The following numbers represent services needed and ,should not be considered the total number of individuals requesting services and fident that their data collection process is at least capturing those supports. Only 15 states indicated that the numbers reported were with the most needs, other are unsure. unduplicated numbers of individuals waiting.
Study Methodology and Results State Total Number of Services Requested Alabama 6,653 How the Study Was Conducted Alaska 1,275 State chapters of The Arc were contacted by mail and Arizona 662 requested to assist in collecting information on waiting lists from Arkansas 1,966 the appropriate state agency or to provide a contact person who California No waiting list reported would have the waiting list information. Where additional Colorado 1,182 Connecticut 2,111 information was needed or where there was no state chapter of District of Columbia 58 The Arc, the state Developmental Disabilities Council or the state Delaware 429 mental retardation/developmental disabilities agency was Florida 6,516 contacted. Written reports on the waiting list were obtained if Georgia 3,046 available. Hawaii 1,395 The nature of the data varied from state to state. Some Idaho 192 states maintained detailed information on types of services Illinois 3,725 requested; others did not. No attempt was made to collect data Indiana 2,067 on waiting lists for transportation services. In reality, however, a Iowa Data not collected lack of transportation deprives many people with disabilities Kansas No waiting list reported from taking advantage of services which do exist. Kentucky 1,778 The numbers collected for this report represent numbers of Louisiana 13,958 Maine 1,759 people waiting for a particular service category. Some people are Maryland 7,494 waiting for more than one service in all but 15 states. Therefore, Massachusetts 3,187 the total waiting list represents number of individual services Michigan 2,946 needed. The number of individuals waiting for services will be Minnesota 2,378 somewhat fewer. In a 1991 survey of people on waiting lists, it Mississippi 775 was estimated that 19.5 percent of the reported number of Missouri 1,774 people waiting for services could be attributed to duplicate Montana 871 counting (Hayden, 1992). Nebraska 2,062 The data in this report represent the most recent numbers Nevada No waiting list reported collected by each state and reported to The Arc during the New Hampshire 193 months July-October 1997. In most cases, the numbers repre- New Jersey 5,496 sent people on the waiting list in 1997. A few states reported New Mexico 1,790 1996 data. New York 50,225 North Carolina 12,654 Information regarding waiting lists was obtained from all North Dakota 137 states and the District of Columbia. Four states reported no Ohio Data not collected waiting lists (California, Kansas, Nevada, and Rhode Island). Oklahoma 2,035 Three states did not collect statewide data (Iowa, Ohio, and West Oregon 7,313 Virginia). Several other states collected limited waiting list data Pennsylvania 28,000 (i.e. Medicaid waiver only in Idaho; family support only in Rhode Island No waiting list reported Illinois). Several states did not break out the list by type of South Carolina 2,293 service for which people were waiting. South Dakota 27 Data was collected by states in a variety of ways, and as Tennessee 3,567 indicated, few states believe that they accurately identify all of Texas 11,084 the people with service needs. Most states recognize that many Utah 3,087 families may not choose to put their family member's name on a Vermont 249 waiting list, if they believe it is unlikely to result in a service. Virginia 4,871 Washington 7,149 Wisconsin, for example, noted that the 2,215 people who West Virginia Data not collected are on waiting lists for a place to live represent a fraction of the Wisconsin 7,745 7,600+ adults with developmental disabilities who are currently Wyoming 12 living with family members (and not receiving any paid residen- tial supports). On the other hand, there may be individuals on TOTAL 218,186 the waiting list who would refuse services if offered, particularly Continued on page 19 PAGE 18 148 TASH Newsletter, May 1998 WAITING LIST WATCH
The List Grows On and On effort is urgently needed for solutions to meet families' needs. Here solutions. Continued from page 18 are a few examples of efforts already undertaken to find residential, as they are not ready to move from the family home Many states use the Medicaid Home and Community-Based at the present time. Waiver, which allows Medicaid to pay for community options A survey of waiting list families in Massachusetts revealed for people who are in an institution or at risk of going to one. 33 percent estimated they would need residential services in 2-5 The waiver can be used to move people out of institutions. It years and 18 percent "in the distant future." can also be used to provide community residential services to In some cases, individuals whose names are on a waiting list people on the waiting list, particularly those with urgent needs. for a particular service may already be receiving some service. Waiver services typically cost considerably less than institu- However, they desire additional services or a different type of tional services, allowing a state to serve more individuals. service. A person living in a group home could be on a waiting Several states have closed institutions or are in the process list for a supported apartment, for example. Or, someone who of closing institutions which enables them to serve more was receiving supported employment services couldbe on a people on the waiting list.State leaders point out that waiting list for counseling, if counseling services were scarce. institutional services are extremely costly. By closing While Pennsylvania has a waiting list of 28,000, it is believed institutions, many more people can be served. Oregon that only 2,000 are not receiving any services. recently announced the closing of the Fairview Develop- ment Center by the year 2000. The state estimates $1.4 Action is Needed to Solve the million in savings in 1998, $6.6 million in 1999 and $14 Waiting List Problem million thereafter which can be used to serve people from the waiting list. Waiting lists are a critical public policy issue in almost every The Arc of New Jersey launched a media campaign titled "A state. However, advocates in many states have failed to commu- Key of Our Own" to help the public and legislators under- nicate successfully the immediacy of family and consumer needs stand the needs of families on the waiting list. As a result, to legislators and others. A large number of families and the voters passed a bond issue to finance the construction of individuals with disabilities on the waiting list need services community residences. now, not some time in the future. A survey of families onthe In Nevada, advocates succeeded in convincing legislators to waiting list for residential services in Massachusetts found 40 fully fund the residential and day services waiting list in 1997 percent needing services immediately or within a year or two. with funds for two years of growth in day services. An in- The caregivers were in poorer health; their sons and daughters crease in family support funds was allocated to help anyfami- had significantly more behavior problems; and fewer had estate lies entering the residential waiting list in the next two years. plans or designated guardians in their wills than the 60 percent After an intensive grassroots family campaign called "A Key who needed services later. of Our Own: Unlock the Waiting List" sponsored by The Many states have a high percentage of people on the waiting Arc of Maryland and other advocacy groups, the state list classified as in a crisis or high need situation. In Utah, one announced a five-year $68.4 million Waiting List Initiative such family has been on the waiting list for 18 years and aimed at finally addressing Maryland's waiting list. The classified as "critically in need of services" for 10 years. Once Initiative includes funds in the governor's 1999 budget for again, the only sure way for an individual to receive services in day programs for all transitioning youth who exit school at many states is for the caretaker to die. age 21 and $5 million for emergency crisis placements. Another issue that goes largely unrecognized is the number of families unknown to the service system. Pennsylvania recently reviewed applications for nursing home placement by aging To review The Arc report in its entirety, visit The Arc's web people with mental retardation and found the majority had never site at
School Restructuring and Inclusion Equity and Excellence for All
AND INC1USION0 71,1111111111im
.EQUITY AND 1998 Equity and Excellence Conference
sponsored by The Institute on Disability/UAP@ University of New Hampshire November 18-21, 1998 Portsmouth, New Hampshire
Schools throughout the country are engaged in systemic school reformbut few have asked how students with disabilities can be fully a part of these efforts.Conversations about curriculum and instruction, school climate, standards andassessment, social justice, and sustainable change need to include all students. The third annual Equityand Excellence Conference will provide an opportunity for teachers, parents, administrators,related service providers, and paraeducators to engage in three days of intensivelearning about these topics with an emphasis on the development of action plans to effectchange in their schools. Again this year the conference will feature national leaders in school reformand inclusive education as strand leaders with keynote addresses by inspirational and provocative speakers. Come as an individual or in teams! Strands!
(9 School Restructuring Technology and Learning(9School Climate (9 Changing Roles (9
Social Justice (9 Inclusive Curriculum Design Standards Based Reform (9
Great Opportunity for Systems Change and Inclusive EducationAdvocates to Offer State-of-the-Art Staff Development for Your School Partners and ProjectSites! Explore the historic Portsmouth area's great restaurants and tax-freeshopping! New This Year! Pre-Conference Workshops on Wednesday November 18th... Critical Skills Early Childhood Education Restructuring Teacher Education Effective Teaching for Heterogeneous Classes Service Learning for All Students Social Relationships
The 1998 Equity and Excellence Conference is co-sponsored by: State of New Hampshire Department of EducationUniversity of New Hampshire Department of Education Consortium on Inclusive Schooling Practices PEAK Parent Center TASH Center for Professional Educational Partnerships at Plymouth State CollegeAssociation of Supervision and Curriculum Development, NH The Institute on Emotional Disabilities at Keene State CollegeInclusion Press International SERESC Call or e-mail Jean Clarke at 603-228-2084 [email protected] for information as it becomes availableor to be on our mailing list. PAGE 20 150 TASH Newsletter, May 1998 LIFELONG IMPACT OF CAREGIVING Current Trends in Providing Support for Families of Adults with Mental Retardation
BY TAMAR HELLER, PH.D.
The following article, which first appeared in the Fall into this category They come to the peers without mental retardation. Hence, 1997 issue of the newsletter; ALERT, is reprinted with attention of providers when a parent dies parents of adults with mental retardation the permission of the Institute on Disability and Human and suddenly there are calls for emergency are much less likely to experience an Development, University of Illinois at Chicago. placements. These families have also been "empty nest" than other families. The author Dr Tamar Heller, is Director of the located when outreach is conducted In addition to fulfilling roles that are Institute's Aging Studies Program and Director of through the aging network, which is often less normative with age, parents of adults the Rehabilitation, Research and Training Center contacted first to address aging-related with mental retardation are less likely to on Aging with Mental Retardation. For additional supports needed by the parents. receive as much formal service support for information on this report, aging studies or long- their offspring as they did when they were term caregiving, Dr Heller can be reached at Because adults with mental retarda- 312-413-1520 (phone), 312-413-0453 (TTY), Or tion are living longer, families have a children. While there is federal legisla- [email protected] (e-mail). longer period of caregiving responsibility tion mandating educational services for For the majority of parents providing care, all children with disabilities, there are having their son or daughter living with no mandates for educational, voca- "As I see it, you bring a child into them after he or she has reached adult- tional, or residential services for adults the world, you're responsible for hood is the preferred choice. Families with disabilities. Hence, in some families him. You have to set up care for who have wanted out-of-home place- the parents are the sole providers for their as long as possible." ments have often encountered long adult son or daughter with mental waiting lists or alternatives that were retardation who may not be receiving any inadequate. Older families become less services or who may be on a waiting list These feelings expressed by one mother able to provide care as parents and siblings for services. Furthermore, many of these who attended a meeting held at the deal with their own aging, careers, and adults lack friends and rely on their parent Institute on Disability and Human other caregiving responsibilities. to meet their social and recreational needs. Development last December, depict the Several studies which we conducted feelings of many parents who provide Theories of lifespan caregiving have suggested that older family caregivers lifelong care to their son or daughter with The developmental disabilities perceive either less personal burden or a mental retardation. This article will present literature has tended to examine lifelong similar level than do younger caregivers. what we know about lifespan caregiving, caregiving from a developmental perspec- We found that with older age there families' needs for supports, and the latest tive that takes into account the normative appears to be greater acceptance of the trends in support services for families. life stage tasks faced by families at different family member and greater reciprocity in life phases. This suggests that as the child caregiving as the adult with mental Life-Long Impact of moves towards adulthood, caregiving retardation takes on caregiving roles with Caregiving becomes less normative, particularly if the aging parents (Hayden & Heller, in press; Heller, Rowitz, & Farber, 1992; Heller, Families of adults with mental child is still highly dependent on the retardation are their primary providers of parents. As the child gets older, the tasks Miller & Factor, in press). For example, in one of the families we care, with at least 80% of adults of all ages and obligations of typical parenthood interviewed a 50 year-old man with mental with mental retardation living at home. become more taxing and more divergent retardation was caring for a 90 year-old wid- Many of these adults are not known to the from normative roles. As children with owed mother who was incontinent and bed- developmental disabilities service system: mental retardation become adults, most estimates indicate that as many as 40% fall continue to live with parents, unlike their Continued on page 22 PAGE 215 TASH Newsletter, May 1998 LIFELONG IMPACT OF CAREGIVING
Current Trends in Providing service provider agencies. The support Family Support Support for Families of Adults staff were then instructed to follow-up Interventions and Policies with Mental Retardation with families on an ongoing basis. In a six As adults with mental retardation and Continued from page 21 month follow-up of the progress made by their parents age, they likely face some families in beginning to discuss and make functional declines and greater difficulty in ridden. A brother living nearby would check future plans we realized that such plan- in on them. They were receiving no devel- ning is a long-term process that requires maintaining independence. Yet, this group of families tends to be low users of opmental disabilities services until the year individualized approaches. Each agency services. Most of these families have been that we met them. used different approaches with varying quite self-reliant in providing care for their The experience of raising a child with degrees of commitment and resources. children over the years. This section will mental retardation can also lead to the The most active agency followed up with development of new capacities and regular phone calls and helped connect describe their service needs and use, the importance of formal services in sustaining strengths that foster adapted responses. families to legal resources. We plan to their ability to provide care, and different Some parents make a career of parenting and follow-up in another year. redefine the centrality of parenting as the models of service provision. major line of activity open to them, begin- Role of siblings Family needs and service use ning to interpret it more positively Over In planning for the future the role of time, parenting can become a stronger source siblings needs to be considered. Siblings Parents have been an undeniable resource for the service systems, and of self-meaning and purpose. often become primary caregivers for their On the other hand, caregiving could relative with mental retardation. As parents who provide a lifelong home for their son or daughter have made major be viewed as more stressful over time, if parents die, siblings often are expected to contributions not only to their families parents had aspirations that they were not take over the responsibility, yet manyare but also to society. Families spend able to achieve due to parenting responsi- unprepared for the role and have rarely bilities. This is particularly true for been included in family training efforts. considerable out-of-pocket expenses for their adult relative with mental retardation women, as they are much more likely than Many families are ambivalent about living at home with them. A study men to have given up a career to care for a whether they want this responsibility for child with a disability. Research has their son or daughter: conducted by Fujiura, Roccoforce, and Braddock (1994) indicated that families of shown that only 8% of mothers return to I just don't want to put that burden on adults with mental retardation spent an work after having a child with a disability my daughter It is one thing to expect a parent average of 20% of their pre-tax annual to love and care for their child; but it is too income on unreimbursed expenses for Future planning much to expect of one's other children. their adult relative. Although families have strong A study examining actual placements As their children transition from preferences regarding the future care of over a three-year period following the childhood to adulthood, parents of adults their relative when they can no longer death of parents found that in nearlyone- with mental retardation face the unique provide care, fewer than half of families quarter of the families the adult with challenge of dealing with their own age- actually make a plan for the future. The mental retardation moved in with a sibling related declines in health and energy and degree to which families plan dependson (Gordon, Seltzer, & Krauss, 1996). Even socioeconomic resources, personal coping when the adult with mental retardation the decreased formal services available for styles, and the types of options available in moved into an out-of-home placement, adults with a disability. In order to maintain this living arrangement, parents their communities. For some families the there was considerable sibling involve- report that their highest needs are for topic is difficult to address, as they may ment, with many taking on the roles of not want to talk about death, or may fear guardian and advocate. respite services, case coordination, and transportation. Other key unmet needs stirring up anxiety among family mem- As families are expected to take on reported by older family caregivers are bers, particularly the adult with disabili- greater roles in providing care, siblings for information regarding residential ties. Some families that struggle to get by may face greater difficulties than parents in programs, financial plans, and guard- have noted that they live one day at a time. assuming such roles. Given the vital role We have no money with which to plan. of siblings, the challenge to service ianship and respite services. Also, they The lower your income, the stronger your providers is to form a partnership with have major needs for advocacy and faith in God. I live from day to day I can't them to support their ongoing involve- financial assistance. In addition to afford big dreams. I just hope to stay healthy ment with their brother or sister. (See needing services for their adult son or daughter with mental retardation, parents Last year we started a futures plan- related article on pages 25-27 of this may also need services for themselves ning program with 62 families at six sites Newsletter.) This necessitates that siblings thrOugh the aging network. in Illinois and Florida. We conducted receive information about services and training for families and support staff on supports and that service providers Families often are unsure of appropri- ate goals and programs for their adult son legal and financial planning. We also understand the preferences and capacities conducted separate training sessions with of siblings. or daughter and they may have reserva- the support staff, case coordinators and tions about using either the aging or Continued on page 23 PAGE 22 152 TASH Newsletter, May 1998 LIFELONG IMPACT OF CAREGIVING
Current Trends in Providing selves cope with the emotional aspects agency Major components included a Support for Families of Adults of caregiving, and for developing future needs assessment, targeting of special with Mental Retardation plans. households, and a program of promoting Continued from page 22 Smith, Majesky, & McCienny (1996) community awareness. The project found report that older families who participated that area agencies on aging could provide developmental disabilities formal services in psycho-educational groups geared to a safety valve for potential crises that system. Many older caregivers have not caregivers of adults with mental retarda- would have resulted in immediate placement had formal services available in the past tion most valued the information on future demands and referral to possibly more costly and express fear that placement is the planning and formal service and the developmental disability programs. Another main aim of the formal service system. opportunity to interact with other parents major finding was that working with cul- For some families who have made a career having similar concerns. Parents who did tural organizations within the local commu- of parenting, use of services reduces their not live with their adult child with a nity resulted in greater willingness of fami- roles and reduces their sense of purpose disability reported benefiting the most lies to accept services. and identity. For example, some families from information on quality of residential may not be comfortable with a respite programs. Although Smith reports family Family support public programs worker who comes in and helps their satisfaction with psycho-educational In the last two decades there has been child gets dressed if that is a responsibility groups, few older family caregivers attend a growing expansion of family support that the family has had for years. Other such events. Even when they would like programs for families of persons with reasons why some families are reluctant to to participate, older family members may developmental disabilities. Most of the accept agency services are: have difficulty with transportation or sched- earlier programs provided discrete types of Previous negative experiences uling. While these short-terrn interventions services that were directed by agencies and Difficulties talking with providers who may ease stress or provide some needed by professionals. These included prima- offer advice families do not agree with or information, they do not tend to have long- rily respite, counseling, and parent who are not sensitive to their concerns lasting impacts. Also, educational programs training services. Later, cash subsidies Complex eligibility criteria for some for caregivers can undermine the caregiver's were added in some states. services own problem-solving capacity and sense of However, with the emerging move- Inflexibility of services control over the situation. ment towards community empowerment and recognition of the need for persons On the other hand, some families may Outreach through the aging with disabilities to remain in their have been long-term users of services. network communities and settings, new family- They may have been active in developing Since federal legislation was passed that driven models have been promulgated. parent organizations, support groups, or targeted collaborative projects between the Generally, these more recent family provider agencies. The service families are aging and developmental disabilities net- support programs are based on the goals most likely to use for their child is day works, there have been several model projects of strengthening family functioning and programming. While many families desire that targeted elderly caregivers of adults with enhancing growth and development of respite, frequently the public financial intellectual disabilities. These projects entail individuals and the family Ultimately, resources for respite care are insufficient to coordination, network building, and inter- most of these programs have the goal of meet the demand. network coalition-building between not only maintaining persons with disabilities the aging and disabilities service agencies, but within the family home. Program Models also other community agencies. As of 1995, 21 states had family Several models of support interventions One example of such a project is the support legislation. While there has been help families in sustaining care and in cop- Hispanic Coalition Network that was an increase in funding for family support ing with their relative. These include: developed in Chicago (Factor, 1996), programs in the last ten years, these Support and psycho-educational groups which organized a Hispanic Fair that programs represent a small portion of Outreach through the aging network brought together 120 providers, elderly spending for mental retardation services. Family support programs Hispanic family caregivers, and other From 1988 to 1996 state expenditures for community resources in a local commu- family support services increased from Support and psycho-educational nity. In order to help attract the families, $171 millions dollars to $488 millions groups health screenings and food were offered. dollars. However, this amount only At least one fourth of the older family Many families who had not previously represents 2% of expenditures for mental caregivers we interviewed expressed an received needed services became aware retardation services and many of these unmet need for a support group (Heller & and linked up with a variety of services. programs only target children (Braddock, Factor, 1993). Support groups are one Another example of a caregiver Hemp. Parish, & Westridge, in press). type of intervention that can provide project is the New York Caregiver Assis- Most of the innovative family aging families with information, skills, tance Project (Janicki, 1996). That project support programs have developed and support for helping the adult with operated from a mode which assigned models of consumer control in which mental retardation, for helping them- outreach and assistance functions to a host Continued on page 24
PAGE 23 153 TASH Newsletter, May 1998 LIFELONG IMPACT OF CAREGIVING
Current Trends in Providing with developmental disabilities the Support for Families of Adults program resulted in the following:. References with Mental Retardation The top services used in the program Braddock, D., Hemp. R., Parish.S., & Continued from page 23 include respite care, transportation, Westridge, J. (in press). The state of the states vocational services, social recreation in developmental disabilities (5th Ed.). Wash- families determine how resources are services, and dental care. ington, DC: American Association on Men- spent. These are based on the premise In comparison with families who did tal Retardation. Factor, A.R. (1996) - Final report: Innova- that families usually know best what it not receive these services through a lot- tive inter-network service models serving older takes to maintain their relative with a tery selection process, the participant adults with developmental disabilities and older disability in the family home. They also families reported fewer unmet service family caregivers. Chicago: Institute on Dis- acknowledge the importance of using the needs, greater satisfaction with services, ability and Human Development, Univer- informal network, including relatives, greater caregiving satisfaction, and sity of Illinois at Chicago. neighbors, and friends by allowing Fujiura, G., Roccoforte, J., & Braddock, greater feelings of competence and self- D. (1994). Cost of disability to the Ameri- families to pay them for support services. efficacy in helping their relative with de- can family American Journal on Mental Re- To promote such flexibility, families may velopmental disabilities.In addition, tardation, 99, 250-261. be offered cash subsidies to spend as they participant families reported less need Gordon, R.M., Seltzer, M.M., & Krauss, choose or, within certain parameters, for out-of-home placements (13 % ver- M.W (1996). The aftermath of parental vouchers to acquire various supports. death: Changes in the context and quality sus 27%) and were more likely to en- of life.In R. L. Schalock (Ed.), Quality of Most of the studies evaluating the gage in legal (68% versus 53%) and fi- life: Its applications to persons with disabilities. impact of these family support programs nancial planning (55% versus 42%) for Washington, DC: American Association on have focused on families of children. their relative. Mental Retardation. These studies have documented their In addition, benefits included more Hayden, M.F & Heller. T. (in press). Sup- success in reducing stress and increasing community integration and improved port, problem-solving/coping ability, and life satisfaction for caregivers. In a study personal burden of younger and older interpersonal relations for the adult caregivers of adults with mental retardation. of a family support program in Illinois with developmental disabilities. Mental Retardation. geared to adults, we found that family Heller, T. & Factor, A. (1991). Permanency subsidies combined with service facilita- We also estimated that the program planning for adults with mental retardation tion and consumer control of services and results in cost savings to the state. Over living with family caregivers. American Jour- expenditures resulted in many positive 27% of the families interviewed noted that nal of Mental Retardation,96, 163-176. benefits over a four-year period. Heller, T.,& Factor. A. (1993). Aging fam- without the program they would need to ily caregivers: Changes in burden and place- The Home-Based Support Services find an out-of-home placement. In FY 95 ment desire. American Journal on Mental Re- Program (HBSSP), administered by the the average annual cost for the Home- tardation, 98, 417-426. Illinois DMHDD, was initiated in 1990 to Based Support Services Program Heller, T., Miller, A.. & Factor. A. (In press). assist adults (age 18 or over) with signifi- (HBSSP) per participant with a develop- Adults with mental retardation as supports cant mental and developmental disabilities to their parents: Effects on parental Caregiving mental disability was $10,668. Out-of- appraisal. Mental Retardation (or severe mental illness) to live more home annual residential costs would Heller, T., Rowitz, L., & Farber, D. (1992). independently on their own or with the r have ranged from $17,362 for a Com- The domestic cycle of families of persons with families. Participants are entitled to munity Living Facility to $75,091 for a mental retardation.Chicago: University of services up to $1,410 per month or $940 state developmental center. While this Illinois Affiliated Program in Developmen- for those receiving Special Education tal Disabilities and School of Public Health, program has many benefits for its partici- University of Illinois at Chicago. services. The program was designed with pants, its demand far exceeds the number Heller, T Ruch-Ross, H., & Kopnick, the joint goals of improving quality of life of people that the program has been able N.M. (1995). The Illinois Home-Based Sup- for people with disabilities and reducing to serve. port Services Program evaluation report. Chi- the cost of providing care for these With the trend to community cago: Institute on Disability and Human De- individuals. It enables participants to velopment, University of Illinois at Chicago. inclusion and consumer control of Janicki, M. (1996). Help for caring: For exercise autonomy in choosing and resources, and pressures to cut costs by older people caring for adults with a develop- obtaining support services or items. reducing residential services, there is likely mental disability Albany: New York State De- HBSSP participants choose a "service to be an increase in family support velopmental Disabilities Planning Council. facilitator" who usually is a case coordina- programs. For older family caregivers this Krauss, M.W, Seltzer, M.M., Gordon, R., tor or other agency personnel. He/she helps can result in added resources for maintain- & Friedman. D.H. (1996). Binding ties: The roles of adult siblings of persons with the participant devise a "service plan" or ing caregiving within the family However, mental retardation. Mental Retardation, 34, package of services and a spending plan for with the advent of managed care there is 93-93. items the participant wants to purchase. the danger that the funds will be too small Smith. G., Majeski, R., & McCienny B. The plan may be revised monthly. or that sufficient residential options will (1996). Psychoeducational support groups Findings from our evaluation study of not be in place for those families not able for aging parents: Developmental and pre- the program (Heller, Ruch-Ross, & liminary outcomes. Mental Retardation, to provide care in the home setting. 34.172-181. Kopaick, 1995) indicated that for adults
PAGE 24 TASH Newsletter, May 1998 SIBLINGS NEED SUPPORT
Across the country, advocates for ties places at home, or it might simply be people with disabilities and their defending a brother's or sister's honor at families have been launching a school or in the community No matter crusade to attack the problem of the how much our parents try to keep us lengthy waiting lists people with disabili- siblings from feeling their parental ties must climb in order to receive responsibility or from feeling burdened residential, day/vocational, or a variety of by our siblings' needs, I believe it is only other necessary services. In Maryland, natural that we siblings do feel an the state waiting list for such services, imposed obligation. Because of this, we sometimes called the "death and dying siblings might bond closely with our list," is approximately 5,300 (Pierre, brothers or sisters and take on extra 1998) people, while the national waiting responsibility in becoming their advo- list is estimated to be approximately cates. Other times, we may shun the 218,000 people, which does not include burden and may start spending more individuals living in state institutions time away from home. Sometimes, who are waiting for community place- siblings might decide not to help at all. ment (Davis, 1997). Issues of involvement and responsi- Parents of people with disabilities bility become significant, once again, Kenneth and Leslie Moore often speak about wanting to ensure that after the death of our parents. Even if the needs of their children with disabili- one parent is left remaining, many ties will be met by states after their death. siblings begin to realize tharat some Parents hope that their burden in raising obBrotber! point they will, ultimately, be the last their children with disabilities won't be remaining familial connection to their inherited by siblings who are trying to brother or sister the last connection create lives of their own. In an ideal SiginosNeeb who witnessed and played a role in all of world, such wishes should be strived for. the siblings' challenges, difficulties and However, in reality, siblings are often the Support accomplishments growing up. Even ones to take on much responsibility for their when the best of schools, public and brothers and sisters with special needs. BY KENNETH MOORE private agencies, and professionals have Much has been written about the been placed around a brother or sister's needs of individuals with disabilities both system of care, a sibling will still be the before and after the death of a parent or only person left bonded to the person parents. But what about the needs of In reatitn siblings are often with disabilities because of familial heart their siblings? What challenges do we theones totakeonmud) and history rather than paycheck duty. siblings face after the death of our This is a heavy responsibility, both parents? What supports do we need as responsibifitfor their brothers emotionally and practically, for a sibling, well? anO sisters with special neebs. whether he or she is in his '20s and just beginning to make important life I am the younger brother of an adult Muth bas been written about woman with multiple physical and decisions for himself, or whether he is developmental disabilities and a chronic the neebs of inOivibuals ivith older and settled, perhaps even raising serious migraine disorder. Through my Oisabilities both before anb children of his own. experience growing up with Leslie, I have We siblings need to know that often felt from an early age that the lives after the beath ofa parent or services established to meet our brothers' of siblings of people with disabilities will parents. But ivl)at about the or sisters' needs will also be there to meet always be significantly different than the our own. Those of us siblings who are lives of our same-aged peers who do not neebs of their siblings? involved in the lives of our brothers and have a brother or sister with special Wbat cbaffenges bowesiblings sisters need assistance in tackling our needs. We siblings simply face added new roles as the primary family support, face after the beat() ofOur responsibilities throughout our lives. especially since our lives will change That responsibility might include helping parents? W(Rit supports drastically after parents die. We would our parents cope with the constant bo we neeb as weft? be helped if the system of care from the demands a brother or sister with disabili- adult service world established a mecha- Continued on page 26
aEST COPY AVAIA' PAGE 25 155 TASH Newsletter, May 1998 SIBLINGS NEED SUPPORT
Siblings Need Support strengthened with a strong sibling Continued from page 25 friendship. My role seemed natural to me. I was somewhat like an older nism for welcoming us, for providing We woubbe hetpaif the brother despite being three years outreach so we would know where to sNstem of care from tbe abult younger. turn, for educating and coaching us service worb estabfisWOa But it was my mother who was there through our new roles, and for facilitating to create the vision for Leslie's life and to our involvement with service providers. mechanismfor welcomingus, work and fight to make sure that the Visible and accessible peer/sibling for provi6ing outreachso we school system, agencies, and community support groups should also be available understood and executed her ideals for to us should we want support in adapting womb know where to turn, for her daughter's inclusion into the fabric of to our new roles and responsibilities. aucating coachingus anb our community's life. My mother fought Some of us who are already advo- throughour new the battles. She knew how to deal with cates need support so we can fully roles,anb for the setbacks, the problems, and the comprehend the complexities of adult facilitating014Y involvement people that stood in front of Leslie's path services the Individualized Team with service provibers. to happiness and independence. When Meetings, the Social Security issues, trust she heard professionals tell her all the funds, managed health care, future reasons why Leslie would never be able planning and, most significantly, the daily to hold a job in the community or live challenges that may seem small but take semi-independently in an apartment away mountains of time. Others who which she now does my mother haven't been as involved might be learned how to Maintain the clarity of her searching for help, too. These cases dream for Leslie despite shaking with her might even be more difficult, since there own uncertainties and fears. may be difficulty accepting the demands One of the hardest problems I faced of becoming a primary advocate for a in taking on the responsibility for guiding brother or sister with disabilities. The Leslie to continued growth is that my role will be different, and the siblings mother would have been the person I might even need help in learning how to would have sought advice from regarding re-connect with a brother or sister who Leslie. No longer is she here to talk to may have caused years of anguish and me and help me understand what to do resentment in the past. in order to be the best guide for my sister. Regardless of past history and And, no matter how much my mother present circumstance, all of us need to be prepared me and Leslie for her inevitable supported in any role that we can play. death, there wasn't any blue print that Support from professionals in the adult Leslie (r) and her mother, Cory she could have left for me and Leslie to service world needs to be available to respective brother or sister. No matter follow. help maximize our participation in our how much each one of us decides to be I do know that my mother worried own siblings' lives no matter how involved, what we all need to be able to that I would feel the burden of Leslie's intensive or minimal our involvement live our own lives with peace of mind is needs. She feared that obligation would might be. Professionals shouldn't quickly the security that our brothers' and sisters' be imposed upon me, and as she planned assume that they are the ones to take over needs will be met even at times when we for Leslie's future, she made sure that I all the responsibilities and the choices for might not be around. recognized my independence and had the our siblings' lives once a parent dies. We I grew up involved with my sister. outlets to create my own life. During her siblings might have more insight into My mother used to tell me that Leslie illness, she did her best to ensure that certain situations and may want to taught me the beginnings of life.I there would be supports available to me advocate for our brothers and sisters. learned quickly that there were things and to Leslie. She didn't want my life to However, professionals also shouldn't that I had the ability to do that she be compromised because of Leslie. assume that a sibling wilt be able to be a couldn't and would never be able to do. But, there is something much more big force in his or her sibling's lives. And, because of that, I took on the job of powerful that my mother planted long Some siblings may not be ready or able to becoming my sister's helper, sometimes ago which has perennially bloomed in carry the responsibility Each one of us with pride and sometimes with resent- our family's garden. She made Leslie a will have a different relationship with our ment. Over the years, our relationship Continued on page 27 PAGE 26 156 TASH Newsletter, May 1998 SIBLINGS NEED SUPPORT
Siblings Need Support can seek the input, assistance, and Continued from page 26 emotional support from other parents, parent educators, and advocates, and know they have a safe place to voice struggles, hopes, fears, and dreams. We I bo know that immother siblings, especially those of us who choose worrieb that I womb feet te to be heavily involved after a parent dies, assume responsibilities that parents would burben of Leslie's neebs. She typically handle. We need a place and fear@ that obligation woulb be people we know we can turn to rather imposeb upon me, anb as she than battling so many issues on our own. Throughout our lives, we siblings of plamieb for Leslie's future, she people with disabilities have seen how mabe sure that I recognizeb vn much support our brothers and sisters have needed. Because of their needs, we inbepenbence anb hab the outlets have also witnessed how much attention
to create rriN own fife ... and support they have received, some- times even at our own expense. By Ken and Leslie (1986) ...She bibn't want vyw fife to be adulthood, roles have already been information centers, and from sibling/ covnproniiseb because of Leslie. developed in families due to familial peer support groups after parents die is patterns and history. Many of us siblings support and guidance in any role we will choose to carry on the work our choose to or will be able to play in the parents accomplished in making the rest lives of our brothers or sisters. Whether true part of the family She facilitated the of our sisters' and brothers' lives full and the role we will play in our siblings' lives love between us and the sense of respon- meaningful. Many siblings will not be will be daily and intensive, kept to an sibility and familial love that should be ready or able to become advocates occasional visit, or is somewhere in there among siblings. And, by letting the some siblings may not even reside in the between, we siblings need support, too. relationships grow naturally and where same state as their brother or sister. In the long run, if service providers, they were meant to go, she gave me the What all of us siblings need from the public and private agencies, and profes- sense of enjoyment that one feels when adult service system, from parent sionals take time and effort after our he or she experiences the pride in parents die to assist us and include us in watching a loved one grow. I am not their process of meeting the needs of our only a part of my sister's life. She is an brothers and sisters, we all will have integral part of mine, and because of that, much to gain. I made the choice early on that I would As a sibling, I implore parent be there for Leslie should anything ever Ken Moore is a freelance writer in Bethesda, happen to my parents. After my mother information centers across the Maryland, and co-author of The ADA and died, I just needed help in learning how People with Mental Illness: A Resource states to 61446 sibling wings as Manual for Employers. He is currently to best cope with and handle the new working on a manuscript entitled Who Will responsibility I had chosen to undertake. part of their centers anb to guThe Be My Mother? a book that will share his and As a sibling, I implore parent ussiblings of people with bis- Leslie's story. Mr Moore begins his graduate studies in the fall at Catholic University in information centers across the states to abilities in buifbing a network Washington, D.C. in the social work field. build sibling wings as part of their Questions about this article or requests for centers and to guide us siblings of people with other siblings, tberebN information on sibling supports can be directed to Mr Moore at 301-468-0940. with disabilities in building a network giving us access to others for with other siblings, thereby giving us References access to others for sharing support and sharing support anb tecbnical Pierre, Robert E. (January 16, 1998). technical assistance through the crises assistance throug& the crises anb "Glendening Urges Expanding Aid for the and through the daily challenges of Disable." The Washington Post. everyday life. Across the states, parent througb the bailchallenges of Davis, S. (1997). A Status Report to the Nation on People with Mental Retardation information and training centers have eveq&T fife. Waiting for Community Services. The Arc. been established to assist parents of children with disabilities. Here, parents PAGE 2715y TASH Newsletter, May 1998 CENTERAlIONHUMANPOLICY
there were 25 full time staff for the workshops. All of the staff positions were "THIS IS STILL A readvertised with only five full time positions (team leaders); the rest were part time. She wanted people who could work WORK IN PROGRESS": flexible hours and who were "connected with the community" The agency discontinued the use of vans to drive COMMON GROUND, groups of people around the community Most people now travel in staff cars, with LITTLETON, NEW reimbursement for mileage paid to staff. For those who need them, there are HAMPSHIRE wheelchair accessible vans. Support for Meaningful Days in PAM WALKER AND MAIR HALL the Community A number of people at Common Common Ground is committed to the belief that those weserve Ground are involved in supported or have the right to fully experience life.It is our role to assist the competitive employment for several hours community in supporting each of its members along their journey. of their week. However, agency staff have also assisted people to pursue other paid Introduction daytime support for 7 to 12 individuals. work options, such as starting their own Nestled in the picturesque town of CISs use their own cars, for which mileage businesses. In addition, they do not aim Littleton, in northern New Hampshire, is reimbursement is received. They support exclusively toward paid work as the single the program Common Ground. The people on an individualized basis as well most meaningful involvement; rather, they program, as it is now organized, is 3 years as in small group activities. The availabil- look more broadly to supporting people in old and supports 52 people with develop- ity of some one-to-one support for a wide variety of integrated day activities, mental disabilities, including some with everybody allows each person the oppor- based on personal interest, that promote significant and multiple impairments, in a tunity to pursue individualized connec- meaningful and valued roles in the broad range of individualized, integrated tions and involvements. One team leader community This may involve any daytime activities, including supported described the advantage of having the combination of activities including and competitive employment, self- staffing available to provide one-to-one supported or competitive employment, employment, volunteer work, and the support, as follows: self employment, volunteer work, leisure pursuit of recreation/leisure activities. We used to have to think, if you found activities, community connections, This report is based on a 3-day visit, in one person who wanted to go skiing, OK, do advocacy, and so on. April of 1997, to Common Ground. The we have three other persons to go skiing? Now, The program has supported a few purpose of our visit was to document we can just go do it with one person. individuals to start their own businesses, innovative, integrated daytime supports some under the auspices of the program for people with developmental disabilities, The Creation of Common Ground and some fully independent of it. For focusing on those directed at assisting Before Common Ground was created instance, Stephanie has a mailing and people in community involvements other in 1994, the agency operated two shel- collating business. For the time being, she than or in addition to supported or tered workshops. As the Area Director put has chosen to operate it from space within competitive employment. it: the agency office building. Eventually, she It was clear that we had a facility-based would like to have her own space, once Common Ground: Organizational system that we were trying to stretch to the business is going and she has accumu- Structure provide community-based supports and lated enough funds to pay for rent and a Common Ground, located in Region I services. We had a building that got in the support person. During our visit, of New Hampshire's service system for way. Due to our staffing pattern, we couldn't Stephanie was in the midst of doing an people with disabilities, is one of a figure out how to do community integration 10,000-piece mailing for the Littleton number of programs that compose White except in groups of people. Chamber of Commerce; she is also a Mountain Mental Health and Develop- It was clear to her that the workshop member of the Chamber and they help to mental Services (WMMH+DS). Common system, which had once been viewed as advertise her business. She has enough Ground employs five full time team "cutting edge," was not capable of work at this point that she may be looking leaders who coordinate the work of a providing appropriate community to hire an assistant in the near future. group of part-time Community Integration opportunities. So, she began a reorganiza- Steve has a delivery service, selling Specialists (CISs). Together, team mem- tion within the agency to create the bagels, doughnuts, and other snacks at bers are responsible for the provision of Common Ground program. Originally, Continued on page 29 PAGE 28 158 TASH Newsletter, May 1998 CENTER 0"1119NHUMAN POLICY
A WORK IN PROGRESS": severe and multiple disabilities, went to staff support and at the same time support COMMON GROUND PROJECT her local school, many people in the staff well. Agencies should not have to be Continued from page 28 community already know her. However, in a position where they feel that the only before her involvement with Common way to provide individualized support is local businesses, as well as taking lunch Ground, other than school, she rarely to reduce staff benefits. As such, a orders by fax, picking them up, and spent time in the community Now, she challenge for states is to provide resources delivering them. His business is fully skiis, swims at the local health club, and and incentives that enable agencies to both independent of Common Ground.Steve enjoys eating out, among other things. provide individualized support and at the receives waiver funding, which covers same time offer staff comprehensive support staff for him. Steve's mother has Less©s and thaHerages benefits. For its part, Common Ground is chosen to directly receive all of the As they have pursued the develop- committed to seeking the means to offer support money for Steve. She did this for ment of innovative practices in supporting full-time work and/or comprehensive a few reasons. After Steve graduated from people to have meaningful daytimes, staff benefits to more of their staff. school, she had helped arrange a job for at Common Ground have discovered new Roles and relationships require him doing deliveries in a hospital, but she challenges. shared community places and experi- felt he was isolated in his work there. In ences. In order for roles and relationships addition, she had seen many other young Need for new staff roles: Reliance to occur, people must spend time with people who had gone from high school on the community, not a facility. By other community members. However, into various employment programs, and closing their sheltered workshops and especially for the younger people sup- she wanted something different for Steve. creating a totally new program focused on ported by Common Ground, many of Most of the people whom the agency community integration, Common Ground their peers without disabilities are supports in paid employment do not work has allowed for the individual daytime working. Thus, for those they support, full time. These people sometimes choose support of each and every person that they whether in work or other activities, to do volunteer work in addition to paid support. Since the closure of the work- Common Ground strives to help them employment. Others who do volunteer shops and the establishment of Common participate in settings that offer opportuni- work do not have paid employment. Ground, staff have not had the option of ties for interaction with peers. However, the agency does not view turning to a facility if and when problems It is especially challenging to figure volunteer work as a substitute for paid arise in the community. Staff have had to out how to assist those who live in work. They are committed to increasing learn to rely on community members to be isolated, rural communities to expand the opportunities for paid employment for involved in relationships and supports. their experiences and social networks. For people they support, and have directed This shift, toward involving the commu- some people, it may involve significant resources to this effort (e.g., the creation of nity, feels better to many of the people travel time to connect with others for the job development position). they support and their families. Staff agree desired activities; for others, it may involve At the same time, work--whether paid that not having the facility pushes them all seeking out what connections are possible or volunteer- does not fill up the whole to be more creative and come up with new within their immediate, rural locality As day of most of those supported by solutions and strategies for support. As one illustration, staff related the story of a Common Ground. Helping people to one team leader put it, "It is not Ol< to just man named Joe, who lived a very isolated spend their remaining daytime meaning- be doing custodial care in the community" life in a very rural area and never came to fully can be a challenge. In a small rural Change involves trade-offs which the program at the workshop. According town, where neighbors may be few and far may bring both advantages and disad- to staff, Joe only said a few words, one of between, and winter snows make road vantages. In order to free up the budget which was "wood." They knew that he travel enormously difficult, establishing to support people in individualized ways loved chopping down trees and doing community connections is not always easy. in the community, the Area Director other work related to wood. At first, staff Staff at Common Ground recognize this reduced the number of staff and the pay assisted Joe, with a loan from the program, difficulty and have put significant effort and benefits to many staff. While there are to buy wood to split and sell. However, into helping find meaningful connections many advantages from the new, more over time, what they have found works and experiences. individualized staffing for the people they better for Joe is to take on small jobs of For example, Scott always wanted to support, at the same time, the disadvan- cutting wood for other community be an actor. In fact, his mother says that tage is that they cannot offer full benefits members as needed. Thus, since the while in high school before he became to part-time staff and they have not always creation of Common Ground, staff have disabled he often talked about dropping been able to retain good staff people who been able to support Joe to both do some out of school and becoming an actor. have desired or needed full-time work and work he enjoys and to have contact with Since Scott still talked about wanting to comprehensive benefits. This is a direc- other community members, within this act, Ellie, his CIS, helped him get a part in tion that many other agencies would not very rural area. On the other hand, while a local community play. She supported choose to go. However, this example Steve's business provides some community Scott to act in the evening practices and points to a dilemma faced by many connections for him within their rural performances. Because Maggie, who has agenciesOhow to increase individualized Continued on page 30 PAGE 29 159 TASH Newsletter, May 1998 CENTERAo4DNHUMAN POLICY
A WORK IN PROGRESS": COMMON GROUND PROJECT In Memoryof Pau(Hearne Continued from page 29
area, his mother is still concerned about 1949-1998 his lack of relationships beyond his family, since he finished school. She is not sure It is with the deepest sadness that we must, once again, report the tragic loss of
what is the best approach to helping him another of our leaders in the disability rights arena. "Unity, Leadership and Impact..." expand his social network, and is debating express the goals and achievements of Paul Hearne, president of The Dole Foundation for whether the family should move to a Employment of People with disabilities and president and CEO of the American Associa- larger community tion of People with Disabilities. Hearne, one of the nation's foremost civil rights leaders and advocates, died Sunday, May 3rd at his home in Arlington, Virginia from complica- Conclusion: tions due to pneumonia. He was 48. Thinking About the Future As president of the Washington D.C.-based Dole Foundation for Employment of In thinking about the future, staff at People with Disabilities, Paul put a spotlight on the importance and value of employment Common Ground feel it is important to as the key to participation and independence for people with disabilities. From his remain flexible.It is the belief of staff at personal experience with disability (he was born with osteogenesis imperfecta,a connec- Common Ground that there are many tive tissue disorder causing his bones to imperfectly form and break frequently), Paul different ways to create valued roles in the knew first hand the discrimination and struggle to gain viable participation, education, community. Based on this, they have employment and legal rights for people with disabilities. significantly expanded the options Paul's life was a series of "firsts." available to the people they support. In He was one of the first students at Long Island's Human Resource Center (one of their journey to do so, they hope to avoid America's first schools to provide a real education to young people with significant getting locked into specific ways of doing disabilities). so, and thus remain open to continual He was the first person with a disability to graduate from Hofstra (New York) Law evolution and learning. As they put it, School. "We need to constantly look at and He established the first dedicated legal services office for people with disabilities: challenge what we are doing so we don't He was one of the nation's first disability employment experts and one of the first get locked into things again. This is still a disability advisors to the New York State Legislature and Department of Education. work in progress." As executive director of Just One Break (J0B) in New York City from 1979 to 1988, Paul established his leadership in the employment arena and wrote the employment All names used throughout the sections of the first national legal handbook for attorneys on disability law in 1980. From report are pseudonyms. 1988 to 1989, as director of the National Council on Disability in Washington D.C., he This article is based on a longer site visit helped draft and press for the passage of the Americans with Disabilities Act (ADA). report on Common Ground, which is In 1989, Paul was asked by Senator Robert Dole to head his foundation on employ- available from the Center on Human ment of people with disabilities in Washington, D.C. For the past ten years, Paul used his PolicyTo receive a copy write to: talents to raise over $15 million in funds for The Dole Foundation, which providesgrants Rachael Zubal for local employment programs throughout the country Center on Human Policy His vision for full participation of people with disabilities was brought to realization Syracuse University with the new organization, the American Association of People with Disabilities (AAPD). 805 South Crouse Avenue Paul, along with four other key leaders of the disability community created AAPD a Syracuse, NY 13244-2280 national non-partisan coalition that represents America's millions of citizens with disabilities. His vision included access to basic benefits often denied people with disabili- The preparation of this article was supported ties. He believed that AAPD would answer the need for all people with disabilities to in part by the National Resource Center on access consumer and economic power and provide a unified purpose and message to Community Integration, Center on Human achieve full inclusion in America. Policy, School of Education, Syracuse Uni- Upon hearing of Hearne's death, Senator Dole said, "Paul is a dear friend who will be versity, through the U.S. Department of Edu- greatly missed. As president of the Dole Foundation, he dedicated hiscareer to insuring that cation, Office of Special Education and Re- individuals with disabilities had full, meaningful participation in everyday life. Paul leavesa habilitative Services, National Institute on legacy of national leadership through the American Association of People with Disabilities.. ." Disability and Rehabilitation Research Paul is survived by his mother, Mrs. Patricia Hearne, one sister, Ms. Jennifer Hughes, (NIDRR),throughContractNo. a brother-in-law, Mark Hughes, one nephew who was also his godchild, Aiden Peter H133D50037. No endorsement by the U.S. Hughes and his wife, Pamela Hearne of New York, NY. Department of Education should be inferred. The Center on Human Policy subcontracts In lieu of flowers, donations may be made to: AAPD, 1819 H Street, NW #330, with TASH for space in this newsletter. Washington, DC, 20006 or Osteogenesis Imperfecta Foundation (0.I.E), 804 W Diamond Avenue, Suite 210, Gaithersburg, MD, 20878.
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PAGE 31 TASH Newsletter, May 1998 G TASH NEWSLETTER 0 o Priscilla Newton, Editor <0 Er(F) z Policy Statement Executive Board ooRg'_1-1 It is TASH's mission to eliminate physical and social ob- Liz Healey, President 0- stacles that prevent equity, diversity and quality of life Mark Partin, Vice President vi L% for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee O Cl- Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary z (7) titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell by the TASH policy on the use of people-first language Donna Gilles Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties. Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
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Telephone: ( Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ O work addressCI home address col lege/library/school $200. O other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant ) Administrator/Adult Services (for whom payment of full fee would present a ) Administrator/Education hardship) $45. ) Administrator/Other Family (group rate) $136. Lifetime Member $1000. ) Adult Service Provider/Staff Add $10 for postage costs for members in Canada ) Behavior Specialist and $25 for members outside the U.S. and Canada. ) Case Manager Funds must be submitted in U.S. dollars and ) Early Childhood Services checks must be drawn on a U.S. bank. Add a $20 ) Educator/Teacher processing fee if check is not drawn on a U.S. bank. ) Gov. Personnel (Federal, State, Local) If you would like to charge your membership, please fill in the necessary information: ) Interested Individual/Advocate/Friend () Mastercard () Visa () Discover ) Legal Services Provider Card Number ) Occupational/Physical Therapist ) Parent/Family Member Expiration Date ) Personal Assistant Signature ) Professional Public Policy Advocate ) Professor/Instructor (College/University)() I would like to arrange to spread my ) Psychologist payments out. Enclose 1/3 and you will receive 2 additional ) Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, ) Related Services Provider please provide the following information: ) Self-Advocate Department ) Social Worker College/University ) Speech/Language Pathologist Student I.D. Number ) Special Education Teacher/Support Anticipated year of completion Specialist ) Staff Development/Trainer () Add $15 if you are applying for an individual ) Student (College/University) membership or $30 if you are applying for an or- ) Supported Employment/Day Personnelganizational membership and also want to become ) Other a member of your local chapter. Please make check payable to: TASH Moving? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 T URGENT! Dated Material Inside! TASH Board kA Election Ballot A
Native erican I Communities: A More Inclusive Society? (U.S.)
People with Disabilities Involved in International Development A (Vietnam; Micronesia)
go A A FROM THE EXECUTIVE DIRECTOR
TABLE OF CONTENTS We have begun sending out member survey forms when we mail membership FROM THE EXECUTIVE DIRECTOR PAGE 2 cards. We have gotten hundreds of 1998 TASH CONFERENCE PAGE 4 responses and I have reviewed all of them. CONFERENCE REGISTRATION FORM PAGE 5 11* Most people are pleased with TASH's TASH TECHS PAGE 7 SELF-DETERMINATION work and especially value the Newsletter, AGENDA IN CANADA PAGE 8 the Journal, the conference, the legislative MARGINALIZED GROUPS IN ICELAND .. PAGE 11 updates they receive and our grassroots PEOPLE WITH DISABILITIES INVOLVED IN INTERNATIONAL DEVELOPMENT PAGE 15 advocacy The survey asks people what INTERNATIONAL PEOPLE FIRST topics they would like to see covered CONFERENCE PAGE 17 more often in our publications and A GLOBAL OVERVIEW OF GIRLS AND conferences. The responses to this WOMEN WITH DISABILITIES PAGE 18 From the Executive Director TASH MULTICULTURAL INTEREST BY NANCY WEISS question vary greatly but can be divided & ACTION GROUP PAGE 20 into two categories ... those that say in NATIVE AMERICAN COMMUNITIES: In this issue of the Newsletter you will essence, TASH should return to a clearer A MORE INCLUSIVE SOCIETY? PAGE 21 find a ballot for new Executive Board focus on the needs of people with the 1998 TASH EXECUTIVE candidates. Please take a minute to BOARD ELECTION PAGE 25 most significant developmental disabilities ELECTION BALLOT PAGE 29 complete it. TASH is not the office in and those that urgeTASHto become a INDEPENDENT LIVING MOVEMENT Baltimore or the organization's staff. broader, multi-disability advocacy IN BRAZIL PAGE 32 Rather, TASH is its members, chapters and organization. In addition, some respon- committees, all of which are represented by dents welcome the broader focus on early a Board of fifteen members, elected by the TASH (formerly The Association for Per- childhood issues, adult issues, and issues membership. The only way to make the sons with Severe Handicaps) is an inter- of aging while others would like to see a Board a truly representational body is to national advocacy association of people return to a focus on children and educa- with disabilities, their family members, have a broad range of members shape the tional issues. Continued on page 3 other advocates and people who work make-up of the Board by voting. in the disability field. TASH actively pro- I motes the full inclusion and participation of persons with disabilities in all aspects /Z? of life. To receive an information packet, MME=EM--1 contact: TASH, 29 W. Susquehanna Av- Whom Do I Contact?? enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 105 or For issues of policy, chapter or committee support, or general e-mail: [email protected]. concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected]
For information on conferences, regional workshops, or technicalassistance, MISSION STATEMENT call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, OTASH Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Stretching the boundaries of what is possible For questions about membership, conference registration or exhibiting call: Building communities in which no one is Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] segregated and everyone belongs; For information on government affairs or fundraising/development, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Forging new alliances that embrace diversity; e-mail:[email protected]
Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, news- letter submissions or advertising, or publication sales, call: Priscilla Newton, Eradicating injustices and inequities; Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, e-mail:[email protected] Supporting research and disseminating knowledge and information; For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, at (415) 338-6230, e-mail: [email protected] Promotinginclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable.Call (4 I 0) 828-8274 ext. 102 to request the recorded version.Requests for permission toreprintmaterial appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 164 TASHNewsletter,June/July 1998 JUNE/JULY 1998
From The Executive Director Eradicating injustices and inequities; tion from other disability organizations? Continued on page 2 Supporting research; Promoting inclusive education for all; TASH is unique in that it is not a This may be a good time to take Disseminating knowledge and professional organization, nor is it a another look at TASH's Mission Statement information; parent or a self-advocacy organization. and ask the questions that every organiza- Supporting progressive legislation Rather, it is a true coming together of tion should ask of itself on a regular basis. and litigation; and, people from a range of walks of life who These questions include: What is TASH's Promoting excellence in services. are tied together by a common set of purpose?; What makes it unique and values and beliefs.It is this shared vision important among other disability organi- I'd like to hear from members about our that makes the organization strong. zations?; and, Where should TASH, as an Mission Statement. Is it still fresh? Does it I'd like to bring together a small organization, focus its energies in the continue to convey what TASH is about at group of members (including chapter coming years? The following is TASH's its core? Does it provide clear guidance with representatives and Executive Board mission statement: regard to the directions in which TASH members) to take a look at TASH's should be focusing its energies? mission and mission statement. Please Stretching the boundaries of A mission statement, of course is just contact me if you have thoughts about the what is possible: thata statement. A good mission issues raised above and/or if you would Building communities in which no one statement reflects the core values and have interest in participating in this small is segregated and everyone belongs; directions of an organization but the real group. I can be reached by phone (410- Forging new alliances that embrace questions are: 828-8274, ext. 101); e-mail: diversity; What are the issues on which TASH [email protected], or fax (410-828-6706). Advocating for opportunities and should be focusing? and, IAS rights; What should distinguish this organiza- ...... 1998 TASH Annual Conference Take time to experience the Seattle City Tour taste, sights and sounds You will learn why Seattle has been named one of that have made Seattle America's most livable cities! Our friendly and informa- tive tour guide will give historical background on the one of the premier area, point out interesting landmarks, as well as give convention destinations insider tips on special shopping and sightseeing areas. in the country! Check Included in the tour is Freeway Park and the bustling Pike Place Market where Seattleites shop for produce and out one, or both, of art. You'll see historic Pioneer Square which was settled these exciting tour in 1852 and is now home to Seattle's top art galleries; the International District, heart of Seattle's Asian com- events during your stay munity; and the magnificent gothic-style in Seattle. buildings on the 680-acre University of Washington campus. Next, explore the Hiram Grapes & Hops Tour Chittenden Locks, the passageway Enjoy the scenery of rural Seattle as you travel to the between saltwater and fresh for Columbia Winery and Redhook Brewery. First, you tour 78,000 vessels a year. Inspect the charming Redhook Brewery Try several complimentary fish ladders where thousands of hearty microbrews, while learning the beer making process salmon travel upstream to spawn. and the history of the Redhook Brewery. You'll receive a Visit a local coffee roasting plant Redhook Brewery souvenir glass during the tour. and learn all about coffee roast- Next, tour the spectacular Columbia Winery.You'll ing. Finish your tour at one last discover Columbia Winery's history and how this winery stop Magnolia Bluff neighbor- produces such award-winning wines. After the tour, enjoy hood north of the city, for picture-perfect complimentary wine tasting - a feast for the senses. views of Elliott Bay and the stunning city skyline. Date: Saturday, December 5th; tour departs at 2:00 PM Date: Sunday, December 6th; tour departs at 9:00 AM Duration: Approximately 5 hours Duration: Approximately 3 hours Cost: $42.00 (includes a box lunch) Cost: $28.00 OOOOO PAGE 3165 TASH Newsletter, June/July 1998 1998 ANNUAL CONFERENCE Via tires 1998 TASH KEYNOTE SPEAKERS We have exciting and varied keynote speakers this year. Some brief preview information about the speakers is listed below. Check out the next issue of the Newsletter or the confer- ence brochure for more complete biographies and pictures! Thursday, December 3, 1998 James Banks James is a Professor of Education and Director of the Center for Multicultural Education at the University of Washington. He is a past President of the American Educational Research TASHConference '98 Association and a past President of the National Council for the SEATTLE. WASHINGTON Social Studies. Sue Rubin Tentative Conference Agenda Sue is a self-advocate diagnosed with autism and moderate mental retardation. Currently she is a student at Whittier College Tuesday, December 1, 1998 and a consultant at WAPADH, an agency that supports adults 8:00 AM - 10:00 PM Registration Open with developmental disabilities, where she demonstrates facilitated communication at monthly trainings Pre-Conference Activities Wednesday, December 2, 1998 Robert Williams Recently appointed by President Clinton, Bob is the Deputy 7:30 AM - 8:45 AMTASH Tech Registration Assistant Secretary for Disability, Aging and Long Term Care Policy 8:30 AM 4:30 PMClub TASH Day Care/Youth Activities in the Office of the Assistant Secretary for Planning and Evalua- 9:00 AM - 4:00 PMTASH Tech Workshops tion. 9:00 AM - 4:00 PMTASH Chapter Development and Leadership Training FRIDAY, DECEMBER 4, 1998 2:00 PM -8:00 PM TASH Conference Registration Duane French 5:00 PM -7:00 PM Opening Reception in the Duane is the first person with a significant disability to be TASH Exhibit Hall appointed as a Division Director with the State of Alaska. Prior to his appointment as the Director of the Division of Vocational Thursday, December 3, 1998 Rehabilitation, Duane was the Executive Director of Access 7:30 AM - 1:00 PM Registration Alaska. Duane most proudly describes himself as a brother in 7:30 AM 3:00 PM TASH Exhibit Hall Open the disability rights movement. 8:30 AM - 5:45 PMClub TASH Day Care/Youth Activities 8:00 AM 3:15 PMConference Sessions and Poster Laura Hershey Presentations Laura is a disability rights leader, poet, writer, and trainer. 3:30 PM - 5:30 PM Plenary Session She educates and agitates whenever possible to promote the 5:30 PM -7:00 PM No-Host Reception rights of people with disabilities. She has organized social change campaigns and events around issues such as Social Friday, December 4, 1998 Security work disincentives, economic justice, disabled women's 7:30 AM - 11:00 AM Registration leadership development, and opposition to charity telethons. 7:30 AM -3:00 PM TASH Exhibit Hall Open Judith Heumann 8:30 AM -5:45 PM Club TASH Day Care/Youth Activities As Assistant Secretary of Education for the Office of Special 8:00 AM 3:15 PM Conference Sessions and Poster Education and Rehabilitative Services, Judith manages the Office Presentations of Special Education Programs, the Rehabilitation Services 3:30 PM 5:30 PM Plenary Session Administration and the National Institute on Disability and 5:30 PM -7:00 PM No-Host Reception Rehabilitation Research.
Saturday, December 5, 1998 Zuhy Sayeed 7:30 AM -9:00 AM Registration Born in India, Zuhy moved to Lloydminster, Canada in 7:30 AM 12:00 PM TASH Exhibit Hall Open 1978 where she began her career in early childhood education. 8:30 AM -1:00 PM Club TASH Day Care/Youth Activities As parents, Zuhy and her husband Raffath became active in the 8:00 AM - 12:45 PM Conference Sessions and Poster field of differing abilities in 1982; today their dedication to Presentations human right and community living is a family commitment. a- :616 PAGE 4 TASHNewsletter,June/July 1998 CONFERENCE REGISTRATION FORM 1998 TASH Conference Registration Form Creating Futures Together Seattle, December 2-5, 1998
Mail form to: TASH 29 W. Susquehanna Avenue, Suite 210, Baltimore MD 21204-5201 Fax form to: 410-828-6706 Questions? Call 1-800-482-TASH
TASHConference '9 8 The registration form can also be found at our Web site at www.tash.org S EATTLE. WASHINGTON You may use this fonn to register for the conference, become a TASH Member, or both! Please Print First Name Last Name Preferred Badge Name Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country This address is: 0 home LI work 0 school El other Billing address (if different from above) Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country Daytime Telephone Work Telephone Fax e-mail This address is: E home L Iwork Li school E other
Please circle the appropriate numbers that describe your affiliation (not more than 3):
1. Administrator/Adult Services 12. Psychologist 2.Administrator/Education 13. Regular Education Teacher/Admin. 3.Administrator/Other 14. Related Services Provider RNIM"'"Ww"111 4.Adult Service Provider/Staff 15. Self-Advocate To Become a TASH Member ov 5. Early Childhood Services 16. Social Worker Renew your Membership NOW... 6. Government Personnel 17. Speech/Language Pathologist You may also use this form to become a member at 7. Legal Services Provider 18. Special Ed. Teacher/Support Spec. the same time you register for the TASH conference! 8. OT/PT 19. Staff Development/Trainer This allows you to register for the conference at the 9. Parent/Family Member 20. Student reduced TASH member rate (see other side for mem- 10. Professional/Public Policy Advocate 21. Supported Employment/Day Personnel ber registration rates) or, use this form to join as a 11. Professor/Instructor (College/University) 22. Other member without registering for the conference. Please fill out this section only if you are registering for the conference: Membership rates are listed below. Determine the appropriate membership category, be sure to fill in TASH Membership: I am a current member E Individual LI Agency the applicable rate on the reverse side of this form Membership# when entering payment information, and include If you are a student member, please list your Student ID# payment at the time you submit your conference reg- EI am becoming a member now (please be sure to enter the applicable cost on the istration payment. reverse side) General International Membership (individuals)$88.00 1'I am renewing my membership now (please be sure to enter the applicable cost on the Agency/Business/University International reverse side) Membership $ 200.00 Optional Conference Information Requested (please request by October 16, 1998) Self-Advocate, Parent, Full-Time Student $45.00 Accessibility Details Family International Membership '' $136.00 LiSign Language Interpreter (2 People) Lifetime International Membership $1,000.00 LiChild Care/Youth Activities (Note: you must fill out an application in advance to register. Space is limited and there is a nominal fee.) (Add $10.00 to memberships in Canada and Roommate Referral Program $25.00 to memberships outside of the U.S. and List any accommodation needs Canada to cover additional postage costs.) Application for CEU credits have been made to the following organizations: Fill in appropriate membership rate on Line 8 on reverse side of this form. National Association of Social Workers, American Physical Therapy Association, The American Occupational Therapy Foundation, American Therapeutic Recreation Association and local education agencies. Li I would like to request further information on CEU credits List Type z.EeyfTtY AVAILALLE PAGEISG TASH Newsletter, June/July 1998 CONFERENCE REGISTRATION FORM
1998 TASH Conference-Creating Futures Together December 2-5
Registration Rates Current orJonngii Please Enter 1998 Conference International Non-Member Member Applicable Cost General $199 $305
Student/Paraprofessional/Parent (Professional) $135 $229
Self Advocate/Parent (non-professional) $ 49 $ 79
One Day Only El Thurs 0 Fri 0 Sat $ 99 $129
1. Cost of Conference Registration from above 1. 2. Subtract Discount if applicable. (Note: Only one discount can be applied.) a. Subtract $20 for full conference Earlybird Registrations (must be faxed or postmarked by September 18th) 2a. b. Subtract $20 per registration for groups of 5 or more registering for the full conference (all registrations must be mailed in the same envelope) 2b. c. Subtract $50 per full conference registration for a regular education teacher registering with a special education teacher, a paraprofessional, or related serviCes personnel; or for any support staff person registering with a self- advocate (must be mailed in the same envelope). Indicate name of person with whom you are registering: 2c.
3. Add $40 late fee if you are registering after November 13th. After November 13th, all registrations will be on-site 3.
TOTAL Conference Registration Fee 4.
TASH Techs: TASH Members $65 1" Choice TASH Tech # Non-Members $80 2^d Choice TASH Tech # Self-Advocate/Parent $40 Note: There is no charge for the Chapter LeadershipTASH Tech.
5. Add Cost of TASH Tech (full day pre-conference workshops; see descriptions, page 7) 5.
6. Add $85 to attend the Special Pre-Conference Symposium on Dual Diagnosis 6.
7. TOURS a. Add $42.00 for the Grapes & Hops Tour (see description on page 3) 7a. b. Add $28 for the Seattle City Tour (see description on page 3) 7b.
8. Add TASH Membership Dues if you are joining TASH International or renewing with this application (see rates on front page of this form) 8.
9. Add $15 to also join your TASH Chapter (only applicable if you are joining or renewing membership for TASH International now) 9.
10.Yes, I will add $5 to support a self-advocate to attend the conference 10. TOTAL Enclosed (Lines 4-10)
Payment Terms Registration will not be accepted without payment by check, official purchase order, or credit card authorization. Please note that payment must be in U.S. Funds only. A $25.00 processing fee will be deducted from cancellations received before November 13, 1998, and added to purchase orders not paid within 30 days after the conference. No refunds will be given for cancellations after November 13, 1998. A $15.00 fee for returned checks or unauthorized charges will be assessed. Check enclosed .2 Purchase Order/State Voucher No.
Visa Mastercard Discover Card Number Exp. Date
Signature
PAGE 6 16b TASH Newsletter, June/July 1998 TASH TECHS
T-8 Alternative Assessments: Innovative lated to positive behavioral support, followed by a State Approaches presentation of the positive behavioral support pro- TASH TECH Jacqueline Farmer Kearns, Dee Spinkston, Martha cess. The format will be very interactive, and will con- Toomey, Sarah Kennedy, Harold Kleinert, Mary Pat centrate on contextual fit, functional assessment, and Farrell, Sue Buchard, Sandra Warren, John Haigh multicomponent support plans. Pre-Conference Seminars This session will showcase innovative approaches from T-16 Ethics of Touch Registration for pre-conference seminars is in addition Kentucky, Delaware, West Virginia, Maryland, Colo- Dave Hingsburger to conference registration. For costs see registration rado and North Carolina. Panel representatives will This workshop is aimed at direct care staff who are form on page 6. share this information in a full day agenda devoted to required to provide physical assistance in any form to 1-1Specific Strategies to Support implementation issues. a person with a disability This interactive workshop Friendships and Community Connections T-9 Creating Creativity will address complex issues including: a ffectional between Adults with and without John Irvin boundaries between care providers and care recipi- Developmental Disabilities This is an interactive workshop that presents creativ- ents; provision of intimate care while maintaining re- Angela Novak Amado ity as a holistic skill that can be learned and devel- spectful boundaries; avoiding potentially abusive situ- Full community participation includes friendships and oped. Creativity is more that just a way of thinking. It ations or a situation that could be misconstrued as relationships with a wide variety of people. This work- is inclusive of how we think, act and speak to one abusive; and establishing an environment that allows shop presents very specific strategies and practical another and to ourselves. It is the skill of allowing people with disbilities to distinguish those who help "how-to" exercises successfully used across the coun- oneself the freedom to create. Participants will receive from those who hurt. try to promote community belonging, valued social a creativity kit to help facilitate their ongoing creativ- T-17 Including Students with Disabilities as roles, and friendships with community members. ity in the work and home setting. Fully Participating Members of the High T-2 Navigating the Autism Treatment Maze T-10 Providing Effective Services for Young School Community Pat Mirenda Children with Autism: Blending Approaches Carol Tashie, Mary Schuh This interactive workshop will provide information to Meet Individual Needs Why students with disabilities should spend their high about various treatment approaches for autism as well Ilene Schwartz, Susan Sandal, Bonnie McBride, Gusty Lee school career with all peers and strategies for over- as a format for evaluating them, in a practical, Boulware, Ann Garfinkle, Stacy Shook coming obstacles that cause students to spend time non-confrontational format. The session will assist The purpose of this workshop is to provide partici- away from typical peers will be discussed. What stu- parents and professionals to understand the options pants with an overview of strategies that are effective dents should be learning in classes, after-school, week- available and make informed decisions about their use. with young children with autism and PDD. An em- ends, and the transition to jobs will be discussed. T-3 Abuse and Neglect of Individuals with phasis will be placed on blending the strengths of dif- TC - TASH Chapter Leadership and Disabilities: Information for Practitioners ferent disciplines to create programs that are effective Development Day Wayne Crawford and appropriate for young children. Issues that will This free leadership development session is for TASH This session provides an overview of abuse/neglect, be addressed include: curricular issues, instructional Chapter Officers, chapter members and people inter- examines roles and responsibilities of practitioners in strategies, the role of peers, and the generalization of ested in forming or joining a TASH Chapter. An in- the investigatory process, and explores how practi- behavior change. teractive day, which includes lunch for pre-registrants, tioners can act collaboratively to protect the interest T-11 Understanding SSA Disability is planned around formal presentations on building of individuals with significant disabilities. An interac- Benefits: It's Easier Than You Think! and maintaining community support, networking and tive format and case studies will be used. Paul Selby, Connie Ferrell building alliances with other organizations, building T-4 A Toolkit for Involving People with Fear of losing SSI is a major concern of many indi- and strengthening international and chapter relation- Disabilities as Project Leaders viduals. The purpose of this session is to heighten ships, and influencing policymakers. Participants will Marilyn Bown, Tamera Dalton, Troy Pope, Jess Kenney, awareness of adult SSA disability programs and to have opportunities to share chapter accomplishments LaNae McKenna, Taunya Day, Claire Mantonya, Gerald present strategies for advocating for the individual with and discuss other issues of importance to chapters. Glenn, Rich Wilson, Paul Day local SSA personnel. The project that is the basis of this workshop is a very T-12 Funding Assistive Technology for successful person-centered planning and training Young Children Pre-conference Symposium on project which partnered people with and without dis- Mary Jane Rapport Dual Diagnosis abilities as team members. This workshop will in- This session will provide an overview of federal laws Introduction to Dual-Diagnosis: Assessment clude video clips, panel discussions, and a practical and regulations pertaining to the provision of assistive and Management of Psychiatirc/Behavioral toolkit that includes everything you need to get started technology devices and services to young children. Conidtions in Persons with Developmental Dis- planning your own project. Relevant legal discussions and letters from federal abilities T-5 Fostering Social Relationships and agencies clarifying issues will be discussed. TASH is pleased to announce this sympo- Building Peer Supports T-13 Creating A Culture of Inquiry: sium, which is jointly sponsored by TASH and Marti Snell, Rachel Janney, Kenna Colley Participatory Action Research Methodology the National Association of the Dually Diag- This workshop will present approaches for building Gail McGregor, Hyun-Sook Park, Jean Gonsier-Gerdin, nosed. peer support and promoting social relationships be- Stacy Hoffman, Elizabeth Kozleski, Dick Sagor, Chris Presenter: Ann R. Poindexter, who is a li- tween students with and without disabilities. We will Salisbury, Anne Smith, Susan Whaley censed physician. She is presently a self-em- give opportunities for participants to apply concepts In this session, participants will be introduced to par- ployed health care management consultant for to case students. ticipatory action research methodologies that are be- persons with mental retardation and psycho- T-6CreatingInclusiveLearning ing used in two federally funded projects that are ac- pathologic diagnoses. She has practiced, re- Communities: Curriculum, Community tively exploring the link between policy, research and searched, and presented extensively on topics Building, and Reflective Practice practice.In both of these projects, school personnel relating to psychiatric diagnosis and treatment Lucille Zeph, Mara Sapon-Shevin, Mary Fisher and other stakeholders are functioning as active part- of persons with developmental disabilities. This session is designed to address some of the ques- ners and/or researchers, focusing their efforts on is- Description: Overall incidence and impor- tions that continue to challenge families and educa- sues of inclusion and school reform. tance of behavioral/psychiatric problems in in- tors who are interested in developing general educa- T-14 From Networking to Netweaving dividuals with developmental disabilities will tion classrooms where effective educational practices Gary Donaldson, Cary Griffin, Stephen Sfehas be outlined, and a simple diagnostic scheme combine with effective community building strategies This workshop focuses on how to transcend organi- will be discussed. Common medical condi- to create learning communities where all participants zational boundaries in order to facilitate sustainable tions, which are easily mistaken for behavioral/ are valued and successful learners. membership of persons with significant disability in psychiatric conditions, will be presented. The T-7 Strategies for Successful Inclusion in the the fabric of community life. Netweaving is a meta- most common psychiatric conditions seen in Core Academic Subjects: Grades 4-12. phor for forming new patterns of collaboration and persons with mental retardation will be pre- Kathy Gee, Kimberly Strain partnerships between diverse segments and sectors sented, along with appropriate mnemonics and A general education secondary teacher in the humani- of the community. Participants will learn how to le- "clue lists" to facilitate diagnosis. ties and social sciences field will team with an inclu- verage existing community resources by using strate- The fee to attend this workshop is $85.00. sive schooling specialist to provide a lively workshop gies that create and add value for mutual gain. Please use the form on pages 5-6 to register. utilizing media, real classroom materials, and activi- T-15 Positive Behavioral Support and Its ties. The focus will be on creative strategies for upper Application to IDEA elementary, middle, and high school inclusive class- Rick Amado, Bobbie Vaughn rooms: curricular issues, instructional strategies, ad- This session provides the most current resources and aptations, modifications, and accountability. information regarding changes in I Islitectly re BEST COPY AVAILABLE PAGE 7 I j TASHNewsletter, June/July1998 SELF-DETERMINATION IN CANADA
oSecuring Self-Determination: Building the Agenda in Canad
BY MICHAEL BACH
Much has been written and said that their sons and daughters had been in recent years of the need to placed in the institution, they came to better protect and promote the two conclusions: individuals lacked self-determination of persons with control over the funding that was being intellectual disabilities. In Canada, a used to keep them in the facility and they number of initiatives are underway to lacked the planning support to assist address the legal, policy, and service them in purchasing and arranging needed delivery structures which have resulted in supports in the community. systematic removal of this basic citizen- The Group presented a proposal to ship right from so many adults with the provincial government for "individu- disabilities.It has been over twenty years alized funding" and "service brokerage," since the first efforts to establish policies tools they proposed would give individu- to secure greater self-determination for als the power they were lacking. Indi- people with intellectual disabilities. Since vidualized funding would be allocated to that time, this agenda has advanced many service evaluation models suggest it individuals on the basis of their personal substantially, even if the obstacles are should be conceived, then it will be left goals and plans for support in the now appearing that much more complex up to the researchers, psychometrists, community and a service broker account- and formidable. and service providers to determine when able to the individualand not to the Exclusion from citizenship and self- people reach the threshold of skill to government or community service determination is rooted in concepts of recover their citizenship. providers would assist the person in what it means to be a person worthy of There is no singular event that marks arranging needed supports. While the recognition and respect and in the laws the moment in Canada at which the proposal was adopted and funded to a which have sought to secure and con- multitude of personal hopes for greater certain extent, the model of individual- struct this figure. To advance the agenda self-determination, and the personal pain ized funding and service brokerage was for change, we must reach back to of its denial, reached a collective con- never fully adopted in British Columbia. question the classical conceptions of sciousness and became a public concern. The legacy of the Woodlands Parent "reason" inherited from Plato and others, But there are some major milestones Group lies in the conceptual framework and entrenched in centuries-old concep- along the way. One of the moments that for funding and supports that grew out of tions of state responsibility for those has had enduring effect in creating a their fundamental commitment to self- deemed to be on the "other side" of public concern and accountability for determination. Over twenty years later, reason. Unless we do so, the agenda for securing greater self-determination was in policies, programs and demonstration securing greater self-determination will the mid-1970s in British Columbia. A initiatives for individualized funding for remain theoretically weak and ineffective group of parents known as the Wood- disability-related supports are being in policy, programmatic, and practical lands Parents Group, named after the adopted across the country, and interna- terms. It will remain limited, as it is now institution where their sons and daugh- tionally. in many 'settings, to a skills-based ters lived, stepped back to analyze why it At the same time that the parents conception, rather than a rights-based was that their family members were movement was formulating a framework one. That is, the focus will be on incarcerated, and what would give them for individualized funding and service whether people have the skills and the rights to self-determination. The brokerage, the Independent Living. capacity to make this or that decision, group had been galvanized, in part, by Movement, first in California and later in and on the strategies to teach them to do Gunnar Dybwad's visit to the Woodlands Canada, was reaching the same conclu- so, rather than on the structural condi- facility in 1976 and his subsequent report sions about the relationship between tions which have removed their right to to the media about the deplorable funding, control over disability-related exercise self-determination in the first conditions for those living there. As the supports, and self-determination and place. As long as self-determination is parents met together, remembering and inclusion in society. Throughout the late seen as a skill, as much research and reviewing their stories about why it continued on page 9 PAGE 8 TASHNewsletter, June/July1998 SELF-DETERMINATION IN CANADA
Building the Agenda alternative to guardianship. that connects the exercise of self- in Canada A number of common elements determination to community. In his book Liberalism, Community and Culture, Conttnued from page 8 define the model of supported decision- making advanced in legislative proposals, Canadian philosopher Will Kymlicka, 1970s and 1980s various "direct-funding" and already enacted in statutory provi- refutes the idea that we make and pilot projects for people with physical sions for the "reform" of guardianship law exercise personal decisions that guide our disabilities were established in provincial in Canada. First, supported decision- lives outside of a relation to our commu- jurisdictions in Canada. A body of making is based on a set of guiding nities, identities, language, and culture. experience, policy development, and principles which emphasize the person's While he and other philosophers who program evaluation demonstrates both right to self-determination and autonomy, critique highly individualistic notions of the viability of this approach to funding, the presumption of capacity, and right to self-determination have not generally and its necessity in ensuring that people decision-making supports to enable extended their perspective to include are able to guide their lives toward the equality before and under the law people with intellectual disabilities, the personal and collective aims they choose. without discrimination on the basis of implications can be drawn. Despite the legacy of a framework to disability Second, the model recognizes Challenges that women and people of secure individualized funding, the color made to the notions of personhood necessary policy and program conditions and rationality which excluded them from have not been adequately formulated or citizenship and democratic participation adopted on a national scale. Political, now have to be taken up by and with legal, service delivery and policy barriers people with intellectual disabilities. now restrict wider implementation of Otherwise, the appeal to self-determina- individualized funding and independent tion will remain a hollow one, and a planning supports. In reviewing some of "skills-enhancing" programmatic response these barriers and how they have been will continue to mark the limits of the addressed, additional conditions for political understanding of disability securing self-determination become difference, and rights. visible and a future agenda for change We have seen in recent years in becomes clearer. Canada the foundations being built in One of the most entrenched barriers terms of philosophy, law, and individual- to individualized funding and to self- ized approaches to planning and funding determination more broadly is the legal to secure decision-making rights. Beyond distinction established in law between that a person's will and intent can form the need for a continued philosophical the "competent" and "incompetent." the basis of a competent decision-making and legal analysis to further alter the Rooted in 14th Century English statutory process which does not remove a person's limiting construct of self-determination, law, and reflected in various competency- decision-making rights. Third, the model communities, labor unions, and govern- related laws such as guardianship acknowledges that decision-making ments are realizing that there are more provisions, this legal distinction has been assistance is often required by any than philosophical choices to be made. one of the major obstacles to people with individual. This could include inter- If individualized planning and intellectual disabilities obtaining control preter assistance, facilitated communica- funding of disability-related supports are over their funding for disability-related tion, assistive technologies, or plain conditions of greater self-determination, supports. Capacity to enter service language. Legal provisions have been then a fundamental restructuring of the contracts and employ support providers adopted in British Columbia, Manitoba, funding mechanisms for thousands of is questioned, and often this status is and the Northwest Territories that legally community service agencies is required. denied solely on the basis of an indi- validate these elements of a supported There are communities in Canada which vidual having an intellectual disability decision-making model. have begun to move in this direction. In Orders of supervision in institutions, Nonetheless, thresholds of legal the city of Thunder Bay, Ontario, for formal guardianship orders, interpreta- capacity persist, even if they have been example, community service agencies tions by Canada's tax department redrawn to include in the category of the agreed in the early 1990s to shift from a (Revenue Canada), liability and other legally "competent" those persons that block-funded approach to disability- requirements on physicians and financial would have otherwise lost their decision- related services to an individualized institutions to ensure legal capacity to making rights. A more fundamental funding approach. A new community make decisions have all conspired to challenge remains: providing the governance structure was established to deny decision-making status. Efforts to theoretical and moral foundations for steer the transformation. The community overcome these legal barriers have been changing the highly individualized board created an autonomous service promoted through work by various notions of self-determination that brokerage agency to assist individuals groups in Canada to develop a "sup- dominate guardianship, contract law, and and families in planning and negotiating ported decision-making model," as an public policy. A perspectivel pcededli- continued on page 10 PAGE 9 TASH Newsletter, June/July 1998 SELF-DETERMINATION IN CANADA
Building the Agenda Other conditions are needed as well. in Canada Legal requirements to construct the Michael Bach is Director of Continued from page 9 "incompetent" of our society continue to Research at The Roeher Institute, hamper the realization of rights and Canada's national institute for the the individualization of dollars. Over the respectful communities. Individuals need study of public policy, disability, and same period, deinstitutionalization well-supported and sustainable support human rights. For further informa- initiatives were mounted in six provincial networks to assist them in obtaining this tion on the self-determination jurisdictions in Canada, all using indi- respect in planning, making decisions, movement in Canada or the work of vidualized funding mechanisms to and managing their disability-related and The Roeher Institute, contact the transfer dollars out of institutions and other supports. Individuals, families, and author or phone 416-661-9611 or into the control of individuals and their support networks require planning e-mail at rnbach@roeherca families to purchase needed community and management supports that are Also visit The Roeher Institute's supports. accountable to them, and not to service website at http://indie.caroe These transitions have not been easy, providers and government funders nor are they fully complete. A number of exclusively Community development issues are being raised. strategies are needed to build inclusive What is the role of existing community communities for people. People require more than individu- References agencies and the status of labor agree- ,! alized funding to become full members. ments as dollars are individualized? For example, see joint Working, The funding can give them access to How are agencies to individualize Coinmittee (Interministry COmMitteeon their block-funded dollars when supports, and the contractual status and IssUeS Affecting,Dependent Adults'and many of them are tied up in services resulting recognition that they are full the Project to, RevieW Adult Guardian:. delivered to groups rather than members of society and communities, ship) (1992), ,",How Can We HelP?,A, , individuals? but until the educational, employment, neW lOOk at Self-cletermination,. How can the control over dollars and recreational, housing, and other sectors interdependenee, subStitute decision decision-making be transferred to begin to better fulfill their human rights making and gnardianShiP in BIC"; individuals and families without obligations to include and accommodate Canadfan AssOciation .for COmMUnity over-burdening them with the people with disabilities, individualized Living (1992);. "Report Of the C.A.C.L. funding will still only be able to buy Task Foree on Alternatives tO Guardian- administration of those dollars and shiP," Toronto: Author; Ontario "placement" in communities. the management of the services they Association far Commtmity purchase? There are simply not enough (1992),. "Brief, to. the 'Standing Corriniit.L As a framework of rights and disability support dollars in current tee- Onthe Adrninistration contractual status to hire and fire public sector budgets, even if they are TorOntO:: Ontaiio-Asshciation for workers is established for individuals individualized, to buy all the support Coniniunity tiving; and families, what is to become of necessary for inclusion. And even if there Will Kyinlicka (1989), LiberaliStn, unionized workers? were, people would quickly become Corrinninity, and CUlture, bxforcl:' consumers more than members in their Clarendon Press. Some are now arguing that it is a communities. FOrrcritiqUes of self-determinatiOn zero sum game. If individuals with In addition, new community which could be usefully applied to.a governance structures are needed to help critiejne 'of the 1egal rnarginalizatiori'of: disabilities are to obtain rights, then people With intellectual disabilities:See, manage the transition. Structures are workers will have to lose them. Such a for example, Iris Marion 'Ioiring (1999),:, position separates the relationship needed that are broadly representative, justice,and the Politics of Differenee, between rights and community, and wins that can address the various interests of PrincetOni. Prineetori.University presS;..' rights for some at the expense of commu- people with disabilities, families, service Sue Sherwin(1992), No Longer:Patient: nity inclusion for all. The claiming of providers, unions, and funders, and that FeminiSt Ethics & Health Care,.. rights is only one of the steps to building can build a common ground of respect PhiladelphiaTeinple University Press. community; without a community that and recognition to keep the process of See, -for example, Hilde Lindeman recognizes and works towards securing transition moving. Finally, we have (1997);:Siories and.their the rights of all of its members, the claims learned in Canada that without more limits: narrative approaches to bioethies, New York: Routledge. become divisive rather than constructive. accountability in government for deliver- Allen E. 'Buchanan and,,Dan W. There are no simple or singular ing on existing human rights commit- ments, and without a more enabling Brock,;(1§B9), beCiding Fc3r Others:The answers to these questions. What has ..Ethics Of Surrogate Decision Making, become clear over the course of these policy framework, communities will not Cambridge: Cambridge University initiatives in Canada is that while have the tools they need to govern Press. individualized planning and funding are funding and development of supports necessary conditions to secure self- that lead to inclusion. determination, they are not sufficient. As
PAGE 10 1 7i TASH Newsletter, June/July 1998 MINORITY WOMEN IN ICELAND What Do Marginalized Groups Have in Common? A STUDY OF MINORITY WOMEN IN ICELAND
BY RANNVEIG TRAUSTADOTTIR, ASSOCIATE PROFESSOR-FACUIR OF SOCIAL SCIENCES, UNIVERSITY OF ICELAND
This article discusses a research visible. With no history of racial and cultural diversity among its small project with three groups of The goal of the study minority women in Iceland: population, Iceland has been character- women with disabilities, lesbians, and is to explore how marginalization ized by one people, one language, one immigrant women. The study, which is and minority status due to culture. still in progress, attempts to understand different social factors Differences in terms of social class what experiences these minority women have been smaller than in most other such as disability, gender, may have in common. It is, in particular, places. Icelandic culture and society their experiences as women the project race, sexual orientation, tends to celebrate and emphasize focuses on. The goal of the study is to ethnicity, and culture sameness, not diversity. The only issues explore how marginalization and minor- of difference or diversity that have influence people's lives. ity status due to different social factors historically been found among the such as disability, gender, race, sexual What common experiences population has been within the Nordic orientation, ethnicity, and culture do different groups of race that has inhabited the country. This influence people's lives. What common marginalized people have? diversity, due to social class, gender, experiences do different groups of ability, age, and sexual orientation, has, Do other marginalized marginalized people have? Do other however, been minimized in the public marginalized groups have any experi- groups have any discourse and largely hidden. The only ences in common with people with experiences in common with difference that has been seriously discussed over the past decades is based disabilities? If so, these groups can learn people with disabilities? from each other and common experi- on gender largely due to the women's ences can create a basis for joining forces movement and feminist researchers against discrimination and which has initiated public discourse on marginalization. Currently, however, and is unusually homogeneous with gender issues. Thus, Iceland presents an most marginalized groups are isolated regard to race and culture. The settlers interesting place for study of minority from one another and seem to know little came from Norway, mostly between the groups and the current research is one of about each other's experiences of 8th and 9th century, and the descendants the first in-depth attempts to understand marginalization and even less about each of these settlers are the country's indig- Iceland as a multicultural society and other's political struggle for equality and enous people. Immigrants from different examine the situation of the country's justice. racial and cultural backgrounds have just minority groups. recently began moving to Iceland. Due to The Icelandic Cultural the country's small and historically The Study Context homogeneous populationIceland only Marginalized groups in Icelandic Iceland is a small island in the North has 260,000 inhabitantsimmigrants of society have not been the focus of Atlantic.It is one of the Nordic countries different racial backgrounds are quite Continued on page 12 PAGE 11173 TASH Newsletter, June/July 1998 MINORITY WOMEN IN ICELAND
What do Marginalized grant from the Icelandic Research Findings Groups Have in Common? Council will end. In the research team's field work, Continued from page 11 This is a qualitative study and the they were struck by the difficulties all main method of collecting data has been three groups of women have had in scholarly endeavor and there is little participant observation. The research gaining access to traditional women's knowledge available about the social team has spent time with individual spheres and roles. Many of the findings forces that influence their lives. The women or groups of women where they relate to how "womanhood" that multiple marginalization of minority come together in public and private which makes women women seems to womenfirst as women and second as settings and the team has emphasized be problematic for all three groups. As a members of another minority group long-term involvement to gain an in- result, the team focused particularly on because of disability, sexual orientation, depth understanding. The involvement the women's experiences in this area. race or culturemakes them ideal in the of the researchers has lasted from a few Two of the central aspects the researchers study of marginalized groups since their weeks up to 2 years. With a small identified in this area were womanhood double minority status exaggerates the number of the women, however, the on- and motherhood. The article concludes processes of marginalization. In this going contact has been sustained over a by reflecting on, first, what the study can study we place specific emphasis on period of more than 3 years. Besides this tell us about the common experiences of examining traditional women's roles in long-term involvement through partici- marginalized groups, and second, what order to understand what these different pant observation, the research team has we can learn about mainstream society by groups of minority women have in conducted in-depth interviews with a studying the lives of marginalized groups. common as women. number of women from all three groups, Each of the three groups women some of their family members or friends, Womanhood with disabilities, lesbians and immigrant and with people who are connected with Gaining the social status of a women are in themselves very diverse. these groups through their work. "woman" is problematic for the women in In order to make the study more manage- all three minority groups. Many of the able we have narrowed our focus with social and cultural dynamics that have to two of the groups. Within the group of do with access to traditional Icelandic Common experiences women with disabilities, we have mostly, women's spheres and womanhood itself is but not solely, focused on women with can create a basis for joining difficult for these women. This manifests intellectual disabilities. Within the group forces against discrimination itself in different ways for each group, but of immigrant women, we have directed and marginalization. the end result is the same: they have our efforts toward women who have difficulties gaining the cultural status of a immigrated to Iceland from Asian "woman" or a "normal" Icelandic woman. countries. The study has been carried out by a The data is collected separately for Women with intellectual disabili- team of four researchers. In addition to each group. Each researcher has "special- ties are usually not regarded as women the author, three graduate students at the ized" in one group although most of the or defined as "normal" women. One University of Iceland have worked on the researchers have in-depth knowledge of reason is that they are commonly seen as the other groups, as well. In the process project from the outset.' The study "eternal children" and not as grown-up of data analysis the research team has started formally in 1996, but prior to that mature women. The vast majority of the attempted to draw out the commonalties the research team had conducted smaller women with intellectual disabilities in the and differences among the three groups. studies with two of the minority groups. study, all of whom are adult women, tend The work on the study will continue First, each researcher analyzes her own to be treated in a child-like manner, until 2001, at which time the current data individually, then the team comes talked to as children, and so on. Their together as a group and analyzes the data disability also increases the notion of collectively in order to identify the them as "abnormal" women. They are, experiences the three groups of women The three graduate students who have worked perhaps, the group that has the greatest on this project are Anna Einarsdottir, Hanna have in common. Some of the study's difficulty in gaining access to woman- Bjorg Sigurjonsdottir, and Sigurlaug H. preliminary findings follow. Svavarsdottir. The author gratefully acknowl- hood and the status of a woman. One edges their important contributions to the study 1 71i1 Continued on page 13 PAGE 12 TASH Newsletter, June/July 1998 MINORITY WOMEN IN ICELAND
What do Marginalized short of the socially and culturally technology, thereby limiting their access Groups Have in Common? acceptable norm in this sphere. It is also to motherhood and sending a strong Continued from page 12 problematic for women in all three signal about motherhood being inappro- groups to express their sexuality. If they priate for them. Some of the lesbians in aspect of this is that it is seen as particu- try to do so, their behavior is seen as our study who do have children feel a larly inappropriate for them to express inappropriate or a threat. great deal of pressure on them as mothers their sexuality in any way. due to the fact that many people see them Motherhood as unfit to raise children. People fear Lesbians are not seen as "normal" Motherhood is often seen as the they will pass their "abnormality" on to women. Their lifestyle and their sexual- essence of womanhood and the most their offspring or that their children will ity threaten traditional womanhood and important aspect of being a woman. It suffer or become "damaged" from challenge the heterosexual order of should, therefore, not be surprising that growing up in a lesbian household. Icelandic mainstream society. Although the women in this study have difficulties Some of the lesbians in our study had gays and lesbians are allowed to marry in gaining access to motherhood. We found been under a direct threat to lose custody Iceland, any expression of sexuality in that all three groups have difficulties in of their children because of this. Lesbi- public is seen as inappropriate. Despite this area and it seems to be related to the ans are also more likely to lose custody of increased legal and civil rights in recent view of them as "non-women," "failed," their children in custody battles than are years, lesbians are still viewed by many as or "defective" women. Below is an heterosexual woman. abnormal and do not fit the cultural overview of how this manifests itself for norm of "womanhood." The stereotype of each group. lesbians as masculine or man-like Icelandic culture and exaggerates the view of them as non- Women with intellectual disabili- women. ties have the most difficulty in gaining society tends to celebrate access to this important and central and emphasize sameness, Immigrant women from Asia suffer aspect of womanhood. Motherhood, not diversity. from a public image in Icelandic society which is seen as the natural goal for as mail-order brides imported by Icelan- "normal" women, is regarded as highly dic men who cannot deal with strong and inappropriate for women with intellectual independent Icelandic women. This disabilities. A small number of the Asian immigrant women in Iceland image is negative and contrary to the women with intellectual disabilities in do not face as great prejudices in the area beliefs of many. Only a very small this study have been sterilized to prevent of motherhood as do the other two number of Asian women have come to them from having children. One woman groups. They do, however, have difficul- Iceland for the purpose of marriage. who did become pregnant was forced to ties in their roles as mothers and are However, this belief has created a view of have an abortion. Some of the women suspected of being "defective" or lacking this group of immigrant women as who had children lost custody of them, when it comes to raising children. "loose" women available for sexual favors. either because the children were taken Mostly they are suspected of not being In a sense, they are seen as exaggerated away from them and placed in care or able to raise "proper" future Icelandic women in the sexual sphere. In addition, because they lost custody to their non- citizens because they do not know how they do not fit the image of "normal" disabled husbands. In its attempt to to cook Icelandic food and do not know Icelandic women because they do not prevent women with intellectual disabili- the country's customs, history or lan- conform to the Icelandic cultural code of ties from taking on the role of mother- guage. Asian immigrant women also womanhood. hood, Icelandic society has created have difficulties in custody battles. Most All three groups have difficulties multiple ways to prevent them from of them have only been in the country for being recognized as "women," as "normal having or raising children. a short time and find the Icelandic women," or as "Icelandic women." language exceedingly difficult to learn. Although their difficulties in this area Lesbians are also seen as "abnormal" As a result, it takes most of them a long express themselves in different ways women and it is not regarded appropriate time to become culturally competent. "womanhood" is clearly problematic for for them to become mothers. In Iceland, This makes it hard for them to fight all of them and they are seen as failing lesbians are denied access to reproductive Continued on page 14 PAGE 131 7 5 TASH Newsletter, June/July 1998 MINORITY WOMEN IN ICELAND
What do Marginalized in the social and cultural sense. The Groups Have in Common? experiences of the women in this study ...social processes of Conanued from page 13 make it clear that it is not enough to be a exclusion create similar biological woman to gain access to custody battles. In addition, their experiences and situations for "womanhood." Examining which women perceived cultural incompetence and lack are denied access to the social and of language skills weighs against them different groups...[and] cultural status of a "woman" gives us a when it is considered who should have identifying common social unique understanding of how societal custody of the child. processes of exclusion forces operate in the social construction For many women motherhood is creates a clearer understanding of gender and the socially acceptable seen as natural, as a given, and a 'central female. This study of the three aspect of life. The difficult access to of the forces that marginalize marginalized groups of women in Iceland motherhood experienced by all three unwanted groups. demonstrates that the "normal" Icelandic groups of minority women is an indica- Identifying how these processes woman, the one who is accepted in the tion of their marginalization and lack of mainstream of society, is non-disabled, access to "normal" or mainstream life in work across different groups heterosexual, and white. Icelandic society unmasks the larger social and cultural issues, thereby Conclusion creating a better understanding Dr Rannveig Traustadottir is This article is a very brief and Associate Professor in the Faculty of simplified account of a complicated long- of the social forces that seem Social Science at the University of term study of three groups of minority to be beyond the control of the Iceland. She received her Ph.D. from women in Iceland. However, it does Syracuse University Dr Traustadottir individual, yet influence present two important points. The first is currently a Visiting Scholar at the University of California, Institute of lesson has to do with the common and shape peoples' lives. Health and Aging in San Francisco. experiences of marginalized groups, and For more information on this study, the second centers around what we can contact Dr Traustadottir in care of learn about mainstream society by creating a better understanding of the Timothy Diamond at 415-502-5205 studying its marginalized groups. social forces that are beyond the control of or by e-mail: [email protected] First, what lessons can we learn from the individual, yet influence and shape this study about the common experiences peoples' lives. This provides an alternative of marginalized groups? The three groups view fo the one that points to individual of minority women who participated in characteristics or "defects" as the cause of The experiences of the this study would seem very differentand social marginalization. This, in turn, gives women in this study make it they are. They do, however, share being marginalized groups knowledge that can clear that it is not enough on the margins of society, which creates be used in fighting against discrimination some common experiences. In this study and marginalization. to be a biological woman to gain we have traced how social processes of Second, what lessons can we learn access to "womanhood." exclusion create similar experiences and about mainstream society by studying its Examining which women are situations for different groups of women marginalized groups? As this study has denied access to the social and and the three groups have much more in progressed we have come to think of it as common in this regard than the research a study of the social construction of cultural status of a "woman" gives team initially anticipated.I believe that gender/woman and the relationship us a unique understanding of how identifying common social processes of between biological and social "woman." societal forces operate in the social exclusion creates a clearer understanding The three groups of minority women who of the forces that marginalize unwanted participated in the study are biological construction of gender and the groups. Identifying how these processes women. There is no disagreement on socially acceptable female. work across different groups unmasks the that. They do, however, have great larger social and cultural issues, thereby difficulties in being recognised as women
PAGE 14 17b TASH Newsletter, June/July 1998 INTERNATIONAL DEVELOPMENT IN VIETNAM AND MICRONESIA WANTED:
I People with Disabilities Involved in International
Development I
BY SUSAN SYGALL Having recently returned from a is known internationally for her expertise building, they brought all of the workers month-long consulting trip to Vietnam in disability policy. We spent the next two and equipment to the ground floor where and Micronesia, I continue to be im- days in Hue (pronounced Whey), a we were since I was unable to negotiate pressed by this truth: in order for people beautiful, small city Our hotel over- the steep stairs with my wheelchair. with disabilities throughout the world to looked the Perfume River where small Again, the determination and optimism gain empowerment and human rights, boats and fishing fleets could be seen to be independent and productive was more people with disabilities and our with their nets gracefully billowing in the overwhelming. During a lively discus- allies need to become involved with the water. The local markets were comprised sion, the leaders and workers expressed grass roots organizing of people with of several blocks of brightly colored surprise and happiness to see people with disabilities throughout the world. As it is kiosks filled with tantalizing merchan- disabilities from another country inter- not possible to describe my entire trip dise: fruits, vegetables, live chickens, ested in what they were doing. They had and all of the amazing experiences I had immense baskets filled with over 20 many visitors from development organi- in a short article, I have chosen to varieties of rice and clothing. Residents zations from other countries, but none of highlight certain aspects of the trip and and travelers alike can find just about these organizations had ever included the impressions which have stayed with anything one might need in these people with disabilities. By the time we me since I have returned home. markets. left, we all felt a sense of solidarity that I have been to Vietnam twice now Clearly my most impressive memory defies words. and both times I have been deeply moved of Hue is of the people we met who are During our stay in Hue, we also by the beauty of the countryside; the involved with providing services to visited a regular elementary school which gentleness and optimism of the people I people with disabilities. We visited a had a class of deaf and hearing impaired have met; and the vibrant colors, sounds, school for blind children and youth that students. These students are placed in a foods and streams of bicycles that is headed by a strong disability rights special class where they learn skills surround me wherever I am. On this trip, activist who is blind himself. The young needed to be included in the regular I was part of a delegation sponsored by children who attend school there are classroom. Although the students use the President's Committee on the Em- extremely proficient in using their informal sign language among them- ployment of People with Disabilities. We styluses to write. They proudly showed selves, there still is no formal sign attended a national conference on off their talents to us with the utmost language in Vietnam, and the teachers disability. Since the conference, the enthusiasm. They all receive training in use oral communication. After six Vietnamese government and people what we would call independent living months in the skill-building class, the have begun to develop and implement skills, and can cross streets filled with students are moved to the regular classes. laws that have many similarities to the complex mazes of bicycles, mopeds, and As very few people with disabilities Americans with Disabilities Act. This is cars (all without traffic lights) using attend regular schools in Vietnam, this is an exciting time in Vietnam and the bamboo sticks for mobility canes. Some a revolutionary program. We spoke with government and the organizations of of the children sleep in a small dormitory the principal about bringing in teachers disabled people are mobilizing to since they are from far-away areas and who could teach sign language. He improve the rights of people with have no local family. Some of the children seemed interested in the concept but disabilities. are orphans, so the people at the school explained that it might be difficult are their family. Though the buildings because of the lack of resources in Hue to Vietnam were small and rustic, the philosophy pay sign language teachers. Following the conference, I traveled and spirit behind the program was an Traveling through the countryside, with two colleagues: Linda Phelps, who is example of empowerment at its best. we visited rural health clinics where a nationally recognized Recreation Later we visited a small business run families with both disabled and non- Specialist, and Pat Wright of the Disabil- by adults who are blind. Although the disabled children receive services. We ity Rights Education Defense Fund, who production was in a second story Continued on page 16 r.jr) PAGE151 ( TASHNewsletter,June/July 1998 INTERNATIONAL DEVELOPMENT IN VIETNAM AND MICRONESIA
International Development rituals that have remained intact for with disabilities talk about their feelings Continued from page 15 hundreds of years. In Pohnpei we were related to having a disability. Out of their privileged enough to attend two feasts discussions came the decision to change visited a rehabilitation center where hosted by the local chiefs. The meals the word used to describe a person with a families learn basic physical therapy skills consisted of crabs, fish, fruit and roasted disability in their language which so they can help their child to maintain pigs; all of the food was prepared by over means "sick " to a word which means and develop physical capabilities once 25 families. The sense of tradition and "someone who has to face obstacles." they have returned to their villages. We community is well preserved in There was also talk of organizing sports also visited the large hospital and medical Micronesia; as the culture becomes more and recreational activities. Perhaps one of school in Hue, met many ambitious westernized, you have to wonder how the most important outcomes of the medical students and had the opportu- that will affect these traditions. discussions was that they began to form nity to go on rounds with them. Some of the jurisdictions, such as their own groups, electing officers and Although medical resources are Guam and Saipan, are covered by our obtaining by-laws and necessary legal scarce, the attitudes and optimism laws (including the Americans with requirements to start their own organiza- were perhaps the most positive I have Disabilities Act). Throughout my tions. seen anywhere in the world. When travels, at times I have seen the rights discussing concepts such as inclusive of people with disabilities denied First Consumer Conference schools, legislative advocacy, the need for because of a pretense stating, "its not Many of the participants from the universal accessibility, leadership pro- our culture." However, no matter the workshops attended Guam's first con- grams, sports and recreationthe culture, the rights of people with disabili- sumer conference in March 1998. And so response was always "not yet!" The ties to receive an appropriate education, the start of a consumer-led disability prevailing message to us from the people obtain jobs, have physical access to rights movement begins. Just as it has we met was, "give us information, share buildings and communication, be treated happened throughout the world, it often your expertise with us, and we will adapt with respect, use public transportation, takes just a few committed individuals it to what we need and perhaps even do become parents and raise families are with passions, goals and a lot of determi- it better." The requests we received human rights and should not be denied. nation and persistence to begin to change were not for money, but for knowl- Although much progress has been made the situation of a class of people. It is a edge, skills and small equipment, such in Micronesia, there are still many gaps in long, hard, and complex road but it starts as mobility canes that fold, tape services that need to be remedied. Our with a few people and a few targeted recorders and sign language training. task, supported by the Western Regional goals. They were also very interested in an Resource Center of the University of exchange between our two countries, Oregon, was to conduct training for More Activists Needed comprised of people with and without people with disabilities and their parents In both Micronesia and Vietnam, disabilities who have the skills and so they would know their rights under the absence of people with disabilities philosophy that can enable people the law, know how to organize to insure involved in international development with disabilities to achieve their rights. they have these rights, and to assist the was evident and I believe this is a huge people with disabilities to start their own loss for the disability and international Micronesia consumer movement. To accomplish this development movements. In Micronesia Following our ten day trip to task and to assist the parent and youth there were no Peace Corps volunteers Vietnam, Pat Wright and I went to groups in meeting the goals they had involved with people with disabilities. Micronesia to conduct training work- identified as important to them, we met Imagine the impact that a Peace Corps shops on leadership and empowerment with politicians, senators, chiefs, special volunteer who is blind, deaf, uses a for young people and adults with education directors and business people. wheelchair or has some other disability disabilities and parents who have The people with disabilities in could have in such a position; that children with disabilities. We visited Micronesia were thrilled to see other person could serve as a role model to Saipan, Palau, Guam and Pohnpei. Each people with disabilities who were not others and share information and jurisdiction is quite different in the there to teach, but to share ideas and strategies with people with and without language, culture and services provided strategies on how to organize. We had disabilities who are committed to to people with disabilities. some remarkable discussions with improving lives for people with disabili- This was my first time in Micronesia parents. They were able to talk about the ties. In Vietnam there were many and I was struck by the beauty of the lush dreams they had for their sons and international development organizations, tropical jungles and abundance of fresh daughters and perhaps expand their but none that I encountered had any fruit and was awed by the clear waters notions about what could be possible. people with disabilities as staff or and variety of fishthey are more Parents felt revitalized in their struggle to volunteers. People with disabilities and spectacular than anywhere I have seen in organize and do outreach to new parents allies need to be involved in the programs the world. In Palau and Pohnpei the with similar issues. that already exist. We need to get culture of the islands are well preserved Something that was especially and there are still traditional feasts and exciting was seeing some of the teens Continued on page 17 PAGE 16 176 TASH Newsletter, June/July 1998 JUNE/JULY 1998
International Development Continued from page 16 independent living centers, sports Annual enthusiasts and professionals involved with disability services to be an International integral part of programs and services in other countries. We also need to invite people with disabilities from People First other countries to be a part of our organizations. Mobility International USA (MIUSA) Conference is striving to do our part by organizing a Youth/Parent Leadership Training this summer in which we will invite our A Huge Success colleagues from Micronesia and Vietnam to join us. We are also planning profes- BY PRISCILLA NEWTON sional exchanges with Vietnam and hope Snow-capped mountain ranges different as Oregon is to Bangladesh to continue our relationship with the stretching as far as the eye or the shared personal triumphs and challenges newly formed consumer groups we met imagination could see formed in their quests to move from segregated in Micronesia. MIUSA hopes to network the backdrop for the Fourth International living environments into homes of their with other international development People First conference in Anchorage in own in the community. organizations to assist them in incorpo- April. Hosted by People First of Anchor- The conference boasted a renowned rating disability issues into all of their age, there were more than 900 people in list of keynote speakers respected for programs and to be available to send attendance from 38 states and 17 their many years of work in the disability consultants with and without disabilities countries over the course of the 3-day rights arena including Gunnar Dybwad, who have a variety of expertise when conference. The degree of planning and Lucy Wong-Hernandez, Akiko Ito and needed. With over 500 million people Marcie Roth. There was also a special with disabilities throughout the world, coordinating of logistical arrangements the importance of all of us working needed to bring together such a diverse session headed by U.N. panel members from Latin America, Eastern and Western together is critical. In our ever increas- group of attendees from many far away ingly interdependent world, all of us have venues was in itself an impressive Europe, Africa and Asia to discuss much to gain: having the friendship and accomplishment. This feat was made implementation of the United States trust of people from around the world, that much more noteworthy because the Standard Rules (on the equalization of learning about new cultures and ways of conference was organized entirely by opportunities for people with disabilities) life, learning new languages, tasting new people with disabilities. in international countries. foods and experiencing new ways of People First chapters are organized There was some time built into the living our lives. In my opinion, that's the across the U.S. and throughout the world to schedule for fun and relaxation, too. Many only way to live life. promote the rights of people with disabili- of the attendees had never been to Alaska ties and to advocate for self-determination. and it proved a real thrill to partake of the And there was much important work going magnificent scenery, have an opportunity to Susan Sygall is the Co-founder and on around disability-related issues, both at view uniquely Alaskan widelife, and share Executive Director of Mobility the local and international level, at this year's the area's incredible history with those International USA (MIUSA) located in conference. people who call Alaska home. Eugene, Oregon. MIUSA promotes Inside the Egan Civic and Conven- The conference left its mark on Anchor- international educational exchange, tion Center, groups of people networked, age. Organizers used the occasion to edu- leadership training, and travel exchanged strategies and information, cate and move businesses toward greater opportunities for people with disabilities. and talked about possible solutions to awareness of, and compliance with, the She is also co-author of several books and common problems.Conference attend- Americans with Disabilities Act. The three videos which discuss the many options ees had opportunities to share insights conference hotels each invested in modifi- people with disabilities have in international educational exchange. and gain perspectives about disability cations to guest rooms to make them more Ms. Sygall can be reached at the issues in other countries. Panels and accessible for people with disabilities (the MIUSA office at 503-343-1284 (voice/ workshops on independent living, Anchorage Hilton Hotel installed a wheel- tdd) or 503-343-6812 (fax). accessible transportation, employment, chair lift on its pool and Jacuzzi). augmentative communication, personal The next International People First assistance services, the criminal justice conference is scheduled for 2002. No system, and a variety of other topics were site has yet been selected. convened. Speakers from loytimas
PAGE 17 TASH Newsletter, June/July 1998 GIRLS AND WOMEN WITH DISABILITIES
Health Care & Survival + faced by females alone. For example, in World-wide, girls and women many areas of sub-Saharan Africa, female are at increased risk of circumcision in girls from 6 to 12 can becoming disabled, and once Girls and lead to significant and chronic pelvic disabled, they are likely to live the disabilities, urinary tract problems and remainder of their lives sicker, poorer and mobility impairments. The operation more socially isolated than either men Women itself, usually performed by local practi- with disabilities or non-disabled women. tioners with unsterilized equipment, These risks even precede birth. Girls places girls at greatly increased risk for a born into poverty are at increased risk of with number of infectious diseases, including being born with a disability, because they HIV/AIDS. This practice can also lead to are more likely to be born to undernour- disabling infections and injuries for both ished mothers, to live and work in more Disabilities: mother and child during childbirth. physically dangerous environments, to A girl or woman with a disability is have less to eat and to receive poorer much less likely to receive adequate quality medical care or no medical care it A Global rehabilitative care than a man with a all. disability of the same age and socio- In societies where preference is given economic background. In many places to boys, particularly in poorer house- Overview where rehabilitation services have been holds, families may be slower to expend established in the aftermath of a regional limited household income on food and BY NORA GROCE, PH.D. or civil war, services are restricted medicine for in ailing daughter than for a specifically to male veterans even though son. For example, parents may be : + conflicts and landmines take a particu- tempted to wait for a few days longer to This paper is based on art article from The larly high toll on girls and women who buy expensive antibiotics for a daughter's Journal of Disability Policy Studies (Vol. 8). gather firewood, draw water and work earache than for a son's, turning a simple the fields. Where services exist, facilities ear infection into a permanent hearing Over the past decade, are often located in cities and require loss. A mother with several young there has been increasing stays of weeks or months. In societies children may be less willing to walk to recognition that women and girls where it is considered improper for a girl the next village to ensure that a daughter with disabilities face or a woman to travel alone or to live receives a timely polio immunization discrimination on two fronts. away from the supervision of her male than would be the case if a son was relatives, attendance at such centers or Not only do pejorative involved. female participation in such programs Where a daughter already has a social attitudes towards may be very rare. disability, such practices may be more those with disabilities limit Not only are girls at increased risk of pronounced, placing female children with their options and opportunities becoming disabled, but once a disability a disability at even greater risk for severe in life, but the second class has occurred, virtually every other illnesses, developing multiple disabilities expected social role is significantly status of females in most or even dying. For example, census data altered. in Nepal indicates that the distribution of societies further restricts individuals with "lower limb" disability is what they are entitled to, Education 12% in males, compared to 5.9% in even within programs Girls with disabilities are routinely females. As almost all lower limb specifically targeted towards confined to their homes by families who disabilities in this population are attribut- those with disabilities. fear public disgrace or physical harm to able to polio which affects males and their daughter should her disability For these reasons, women females in equal numbers the imbal- become public knowledge. Education for ance in gender distribution reflects higher and girls with disabilities are girls and women with disabilities, even in mortality rates in female survivors, not often said to face double countries where female education is now higher prevalence rates of polio in males. discrimination. accepted as the norm, is strikingly low. Compounding these factors are risks Furthermore, the education of a girl with incurred by specific cultural practices : Continued on page 19 1 8'1) PAGE 18 TASH Newsletter, June/July 1998 GIRLS AND WOMEN WITH DISABILITIES
Girls and Women with :* + are notoriously inaccurate, it is now Disabilities A girl or woman with a believed that girls and women with disabilities face abuse at least twice as Continued from page 18 disability is much less likely to often as their non-disabled peers. a disability is often disrupted more receive adequate rehabilitative Furthermore, there is often a prevailing frequently and ended at a younger age care than a man with a disability social perspective that in effect states that than is the case for her non-disabled of the same age and a female with a disability should be peers. Recent UNESCO studies and socio-economic background. willing to put up with a greater amount studies from the World Blind Union of abuse than a woman without a In many places where estimate that the world-wide literacy disability because she is "lucky" to get rate for girls and women with disabilities rehabilitation services have any man. in developing countries hovers near 1%. been established in the Moreover, to truly understand the One reason why many girls and aftermath of a regional or civil issues faced by women and girls with women with disabilities are rarely war, services are restricted disabilities around the world, it is educated is because their families or specifically to male veterans important to recognize the fact that the societies do not see a need for their problems they face are complex. The even though conflicts and education. There is often little expecta- life of a woman or a girl with a disability tion that a girl with a disability will live landmines take a particularly will be affected by the social and independently or will marry and high toll on girls and women economic class into which she is born, establish a household of her own. As who gather firewood, draw her marital status or potential marital one often does not become a full adult water and work the fields. status, her family's social networks, her in the eyes of the community until level of education and the specific type marriage, lack of marriage keeps many of disability she may have. A daughter women with a disability forever in the economic planners, their communities with a disability that comes from a status of "dependent child." (This does and even their own families. In addition wealthy family may be surrounded by a not mean that many girls and women to their contributions to their own supportive family and family servants. with disabilities do not establish households, millions of girls and women A daughter of a poor family in the same relationships, become sexually active or with disabilities around the world help community with an identical type of bear children. It means only that their support themselves and their families by disability may find herself a street beggar activity is often not acknowledged by begging. Millions more, unable to at an early age. the societies in which they live.) support themselves in any other manner and isolated from family, community Conclusion Employment and societal support systems available to The future for girls and women with Although employment rates for girls their non-disabled peers, are forced to disabilities is still cloudy. Major health, and women with disabilities are low turn to prostitution. education and development initiatives (according to the United Nations, that target girls and women all too often perhaps only 25% of women with Abuse overlook those who have a disability. disabilities are in the workforce), this Married or single, girls and women Many of the local, national, and interna- does not mean that most of these with disabilities are at greater risk for tional organizations that address women do not work. Here, again, it physical, verbal and emotional abuse disability issues tend to reach men, but means only that this work is often not than non-disabled females in the same spend disappointingly little time or acknowledged by the communities in households. Although statistics on abuse attention on the unique psychological, which they live. Many girls and women social, economic and cultural issues that contribute significantly to the economic complicate and restrict the lives of girls well being of their households by Major health, education and women who suffer double discrimi- cooking, cleaning, watching children, and development initiatives nation because of disability and gender. assembling piece work that will be taken that target girls and women to market by others, and doing the Reprinted with permission of One-In-Ten (Vol. 17), all too often overlook those a joint publication of Rehabilitation International hundreds of chores that make families, (RI) and UNICEF. For more information on the villages and societies run. Their who have a disability. work of RI, call (212) 420-1500. contributions are often overlooked by + PAGE 191 8 TASH Newsletter, June/July 1998 MULTICULTURAL INTEREST AND ACTION GROUP
SEE OUR NEW EXPANDED Quality Crafted Do you market or manufacture CATALOG an assistive device or product that FOR THESE ITEMS AND MORE In The U.S.A. would be of interest to our readers? Positioning Furniture Sete Ivor s Chairs Floor Sitters Mc Mobility Aids. Why not advertise it in TASH's Prone Walkers, Scooter Boards Assistive Technology Newsletter! & Wheelchairs This issue will present articles on the latest research and innovations in the assistive technology field. CUSTOMER ASK OUR. \us ei Be one of the first to reserve PLEASEABOUT Ap caawg your space in this information SERVICEtee &apccce,sasi;i3ftek_sse019,elol oducls 0 tecl and product-packed issue! ?UseProg( Oueç0Oeres Fac.locy 'pea\ et 0 \zed P,o1N-tor or vta Wheelchair Trays hardvate For rate information Communication Easels or to reserue space, call Priscilla Newton at Consumer Carem REHAB SPECIALTIES DIVISION 410-828-8274,ext. 102 810 N. Water St., PO Box 684 Sheboygan, WI 53082-0684
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TASH Multicultural Interest and Action Group The Multicultural Interest and Action Group worked with service and advocacy systems that are respectful of cultural and the Community Living Group in planning the agenda for ability differences can be generated throughout the world. The Gathering at the 1997 National TASH Conference in It is still a concern of this Group that diversity begin at the Boston last December. Deciding that our culture is with us at all state and local level. The following survey was suggested for times, the multicultural interest group took up residency in the each state chapter: Community Living Gathering. Shoeprints of all colors led the 1. What cultures are represented in your area? way to the Community Living Gathering Place. 2.Do you have cultural diversity in your chapter? If "yes," The Multicultural I & A Group also held its annual meeting in how do/did you promote diversity? the "Gathering" Room. Although the Grassroots Consortium was 3.Are you involved in any multicultural committees for other unable to close the Community Living Gathering, a small group of organizations? (CEC, UAP, etc.) attendees played some "culture games," and talked about cultural 4.Have you developed any culturally relevant materials? and linguistic diversity in a barrier-filled world. In closing, as the 5.Has your chapter supported diversity and inclusion in group sat in a circle, a small polished stone was passed around the natural environments? room, with each participant saying what they had gained from the 6. Would you share the names of people in your chapter Conference to take back to their community The keeper of the interested in multicultural issues that would be interested in stone, Joe Wykowski, is charged with returning it to the next being on a "list serve?" "Gathering" for another round of information sharing! 7. What can the National TASH Multicultural Group do with state Again, it is the desire of the Multicultural Interest & Action chapters to focus on underserved communities of diversity? Group to encourage the spread of multicultural issues and topics throughout the 1998 annual conference. It is hoped that this For more information or to participate in the group, contact: will encourage more people to either find out about their "roots" Lynda Baumgardner, 307-837-2918 or [email protected] or learn more about another culture. With this information being provided at the TASH conference, the development of PAGE 20 182 TASH Newsletter, June/July 1998 NATIVE AMERICAN COMMUNITIES Native American Communities A More IncfusiveSociet?
BY LADONNA FOWLER, THE RURAL INSTITUTE ON DISABILITY, MONTANA
Introduction was when I was in the seventh grade and I am an enrolled member of the Fort had a disagreement with some of the Belknap reservation in northeastern Our children have popular girls.I stood up for whatever Montana but I presently reside on the was the "right thing" and can still hear Flathead Reservation. My father is an had the benefit of these girls saying, "...you sure do think a Assiniboine (Nakota) and Santee Sioux lot of yourself." My response was, "...I (Dakota). My mother was Turtle growing up with know who I am and if that is thinking a Mountain Chippewa (Anishinabe).I am lot of myself, then I guess I do." I can the youngest of my brothers and sisters. differences and remember telling my mom about the I still have three sisters and two brothers conversation and she repeated that I had living (there were eleven of us). learning to tolerate to know who I was and that I had a I presently work for the Rural purpose for being here.It was my job to Institute on Disabilities at the University all human beings. find out what that purpose was and not of Montana for the Native American listen to anyone saying things to Community Programs which include the A A A dissuade me. I think that this was the American Indian Choices Project and the first time that I realized that others American Indian Disability Legislation was away from home for months at a might see me in a different light. Their Project.I am the Project Director for time and learned my own survival skills attitude and statements were a surprise both programs. combined with the many things that my to me at the time. mom taught me. My mom and I were Family Life very close and she passed on many of Adolescence I was born with spina bifida and her beliefs in order to make me strong in There was a distinct difference was not given much hope for survival by spirit and beliefs. between what I was told (or not told) at the medical profession. Fortunately for Expectations for me were really no Shriners and what I was told at home. me, my parents sought help. My father different than for anyone else in the At Shriners we were not told anything met a Shriner and found out about the family.I did things in a different way about sexuality or what to expect as free services for children with disabilities and had to ask for help, but I was very adolescents moving toward adulthood. (then known as crippled children). We independent. Looking back, I believe Yet at home our mother told me and my lived hundreds of miles from the nearest that the belief in myself and what I sisters the facts about our bodies and center, but my folks always scraped the could do was a message that I heard and there was never a lack of expectation money together to get me to my ap- saw from my family.I had no idea that I that I would not proceed in life as my pointments. My early life was spent was a child with a disability because we sisters had (marriage, children, etc.). having corrective surgery for a club foot saw it more as just health problems that I had boyfriends, and was even and major hip operations that were had to be dealt with. engaged to be married just before pretty much experimental at the time.I One memory that really stands out Continued on page 22 PAGE 2118 3 TASH Newsletter, June/July 1998 NATIVE AMERICAN COMMUNITIES
Native American V V V grade and Andrea entered the 5th grade. Communities A More There is one thing that my children will Inclusive Society? believe in the always be and that is strong disability Continued from page 21 advocates. They check out accessibility for restaurants, stores, and particularly graduation. My parents both talked to Native American bathrooms, to see if their Mom can get me about how hard relationships and in the door. They do help out more in marriage can be at an early age. They communities we have assisting me, but I never see it as a wanted me to have more skills by going a more inclusive society burden to my children. They must learn to school so that I could take care of to care for those around them in their myself.I reconsidered the marriage and include people community, particularly the elders, and proposal shortly after graduation and this teaches them more about utilizing proceeded with my education. no matter what an "us" rather than a "me" perspective.
Marriage and Parenting their abilities. My Spirit Dances I spent a lot of time experiencing Culturally, we attend powwows in life by going to school, working and In most Native the spring and summer. Our daughter occasionally returning home to my dances and our son is showing more family to help take care of my nieces and American languages interest in wanting to dance. Even nephews. But I always wanted to see though I cannot join the circle to what was happening off the reservation there is no word dance, we still participate by bringing and would leave again. the kids, camping out, and attending Then in 1983 I met my husband, for disability. the celebrations.I always tell my Tracy, while we were both attending family that I let my spirit dance and my school at Oklahoma State Tech in A A A daughter says that she dances for the Okmulgee, Oklahoma. Our son was people and for me. born in 1985 and our daughter was I believe that in the Native American born in 1986. Again, my family was to keep the kids close to you and teach communities we have a more inclusive very supportive of our becoming them early on that they can't run away society and include people no matter parents. I had difficulties during both of from you. I laughed when I realize that what their abilities. In most Native my pregnancies and found myself I had developed my mom's same deadly American languages there is no word for breaking new ground for my obstetrician "look" that told my children to stop and disability in dealing with spina bifida and preg- stay put! There are roles that we have in our nancy. families and in our communities. My I felt a lack of acceptance and had Learning Tolerance children know that I work at a national more questions from those individuals Our children have had the benefit of level as a Native American disability outside my family and my community growing up with differences and advocate and share me and my time, People could not understand why I learning to tolerate all human beings. helping others to get services and would want to "add to my burden" or When other children would ask ques- education around disability. But the "make it harder on myself." I was too tions about my wheelchair, my kids bottom line when I get home from travel busy as a new mom to really listen to were the first to answer rather rudely or commuting is that I have a definite those type of comments. until we worked on some answers that role as the hub of my family My experience with my son was were based on looking at how "big" the particularly memorable because he was child asking the question was and how our first born and I had to figure out much time we had to answer. Some- Reprinted with permission of One-In-Ten how to carry him in the wheelchair, to times my daughter would point out to (Vol. 17), a joint publication of get him around the house utilizing a other kids that she was able to ride with Rehabilitation International (RI) and UNICEF. For more information on the bassinet, a baby carrier and a stroller. her mom while they had to walk beside work of RI, call (212) 420-1500. My most difficult times were when their mom. both of my children were toddlers. If My children are now 12 and 10 you have a mobility issue, then you tend years old. Kyle just entered the 7th
PAGE 22 1 8q TASH Newsletter, June/July 1998 JUNE/JULY 1998
Geneva Centre for Autism GENEVA TASII wishes to CENTRE Presents
INTERNATIONAL SYMPOSIUM ON acknowledge thegenerous AUTISM 1998 support of our November 4, 5 & 6, 1998 Toronto Canada Featuring newest lifetime member Dr. Stanley Greenspan Dr. Simon Baron-Cohen Ohishi Kouji Dr. Temple Grandin Dr. Tony Attwood Lifetime membership entitles you to Dr. Andrew Bondy full international and chapter member benefits Dr. Peter Szatmari Dr. Fred Volkmar for your lifetime. The cost can be remitted over Mr. Paul Shattock several monthly payments. If you are interested in Dr. Margaret Batman becoming a lifetime member of TASH, Registration/Information contact Congress Canada at contact Rose Holsey at 410-828-8274, ext. 100. (416) 504-4500; fax (416) 504-4505 Or visit the Geneva Centre webske www.autIsm.net
CALL FOR PROPOSALS Nevada Community Inclusion Conference: TEACHERS NEEDED Empowerment through Community Inclusion November 6-7, 1998 Public schools on the beautiful Oregon Coast This exciting inclusion conference is a collaborative effort have immediate openings for innovative, collabo- among TASH-Southern Nevada, Nevada CEC Chapter, Nevada rative teachers with licensure and education expe- APSE, the Nevada UAP, the TASH Education Committee and the Community Rehabilitation Program, Region IX at Interwork. rience to work with students with significant dis- Tentative featured speakers include Dr. Ian Pumpian, Dr. abilities.Prefer skills in augmentative/alternative David Mank, Dr. Patricia Rogan, Barbara Buswell, and Dr. Doug Fisher. communication, behavioral analysis including com- We are currently seeking proposals from individuals and municative functions, positive behavior interven- groups in Nevada and nationally who have created and/or are utilizing innovative supports for children and adults with tion, supports for inclusion, functional assessment/ disabilities. The proposal should reflect the best of what is happening to connect individuals with their communities to instruction, curricular modification, and build bridges and supports in such areas as early childhood transdisciplinary service delivery. education, recreation, transition from school to adult life, supported employment, supported living, and strengthening Contact South Coast ESD, 1350 Teakwood, families. Coos Bay, OR 97420, Attention: Sharron or Those who wish to submit a proposal or register for the conference should contact: Catherine or call 541-269-4520 (voice); or 541- Colleen Thoma, Ph.D.University of Nevada Las Vegas 269-1611 (TDD). 4505 Maryland Parkway Las Vegas, NV 89154-3014 702-895-1112 (voice) 702-895-0984 (fax) EOE [email protected]
PAGE 218 5 TASH Newsletter, June/July 1998 JUNE/JULY 1998
Para Educators UNITED CEREBRAL Life Lines PALSY ASSOCIATION 'in the Classroom OF OREGON & SW WASHINGTON 199 8 Trainer-of-Trainer Adult Program Director UCP seeks a candidate who has proven leadership and Sessions vision, is a potent advocate for people with disabilities, Build in-districtresources to exhibits a strong values-driven orientation, is able to see the "big" picture as well as pay attention to the de- ensure on-going paraeducator tails, believes in planning and is a successful change training by attending this agent. UCP has transitioned its programs away from group homes and sheltered workshops. We support 90 3-day workshop to becomea people one-on-one-at-a-time in their own homes and ©Lifelines trainer. in individual jobs in the community. We operate in a non-hierarchical environment emphasizing teamwork within the 42-person staff. Offered by Responsibilities: Helping to oversee the agency while advocating for the Community Services Department (CSD); co-facilitating LeCOIVSULTINJG: Board and staff planning; operationalizing agency mis- sion within CSD; assuring quality of services and effec- tive management of department; supervising and Las Vegas September 14-16 mentoring CSD managerial staff; overseeing budget de- velopment/fiscal monitoring of staff; facilitating coop- OrlandoSeptember 21-23 erative working relationships among UCP staff, vendors, other service providers, people we support, families, and San Diego September 21-23 other constituents; presenting and providing technical assistance outside of UCP; developing methods to ob- Skokie October 5-6 tain feedback from people we support; and overseeing ProvidenceOctober 26-28 compliance of federal, state, and county regulations. Benefits: Salary $37,500 to $40,000 plus full medical insurance For more details: (optional dental) and Board matched tax sheltered LeCONISULTIIVG annuity.
P.O. Box 6049-747 Persons interested in applying should submit Katy, Texas 77491-6049 a cover letter and resume to: Bud Thoune, Executive Director Telephone 281-395-4978 United Cerebral Palsy of Oregon and SW Washington, Inc. Fax 713-973-1271 7830 SE Foster Road www.lrconsulting.com Portland, OR 97206
PAGE 24 18 6 TASH Newsletter, June/July 1998 1998 BOARD ELECTION
Students with Severe Disabilities(CRI), /m1\ Director of a series of personnel training projects addressing integration, community intensive instruction and inclusion, and as Training Coordinator for the Rehabilitation, Te1 Research and Training Center on Positive Behavioral Support, a six University consor- tium dedicated to developing and dissemi- nating practical technologies for supporting fAtS individuals with behavioral challenges in inclusive school, work and community environments. Over the course of this project, she coordinated the development of a comprehensive inservice training model to establish interagency state level training teams. As a result, a network of 20 State Executive Board teams is working collaboratively to provide training and technical assistance to assist local communities in building the capacity to provide effective and respectful positive behavioral supports in inclusive settings. She also serves on a variety of national, state, and local committees and advisory boards. ELECTION Jacki has been an active member of TASH since 1979 and of CAL-TASH since it was founded in 1982. She is past president BUILDING TASH LEADERSHIP been readily evident throughout the three of the CAL-TASH board and has been a Now is the time for you to decide who decades she has been in this field. As a board member since 1989. Jacki would will help provide critical leadership in TASH's classroom teacher, she spent 10 years bring to the board an understanding of and social justice movement for people with dis- working in the first integrated California commitment to the relationship between abilities. Many important issues and challenges public schools program for students with TASH and the chapters. She has a genuine face us - your participation as a voting mem- multiple disabilities, autism and other health interest in the organization's continued efforts ber of TASH counts more than ever. impairments. These students, who had in the areas of advocacy and the dissemina- Five of the 15 seats on the TASH historically been served in institutions or tion of information via the journal, newsletter Executive Board will be re-seated at the segregated schools, taught her the power of and efforts to influence legislation and policy December 1998 TASH Conference in Seattle. teaching in natural environments, the development that support the rights of The individuals who appear on this year's importance of family partnerships in the individuals with significant disabilities to be slate have made significant contributions in educational process, and the tremendous active and respected members of our society the lives of individuals with disabilities and need for both advocacy for effective services have demonstrated leadership in the and educated support personnel. DOUG disabilities movement. These important lessons have been the BIKLEN Your vote is critical. Please use the foundation of her efforts as a trainer, Doug is the postage-paid, self-mailing ballot provided on researcher, and facilitator of systems change. Director of the page 29, or clearly write "ballot" on the She has over twenty years' experience Facilitated envelope you use. Ballots must be received conducting inservice training activities Communication at the TASH office by September 30, 1998. around the country and has taught for Institute at Please use ink and vote for five candidates. eighteen years in Special Education teacher Syracuse Voting for more than 5 nominees will training programs at the University of University. For invalidate your vote. Wisconsin, San Francisco State University, over 27 years he has been actively studying and California State University Hayward, and promoting inclusive education. He has THE FOLLOWING ARE THE where she has served as coordinator of the written extensively about community NOMINEES FOR THE TASH masters degree and credential programs in inclusion, disability rights, handicapism, EXECUTIVE BOARD OF DIRECTORS the area of moderate-to-severe disabilities inclusive education, and facilitated commu- since 1983. nication. During his past eight years, he has JACKI L. Jacki's areas of specialization include focused his energy almost exclusively on ANDERSON personnel training, inclusion of individuals facilitated communication, working to ensure Jacki with significant disabilities, and positive its availability to people with disabilities. He Anderson's behavior support. She has been awarded is a frequent contributor to JASH, current ongoing commit- funds to pursue all of these interests via chair of the Executive Committee, the ment to include research, training, and model demonstration current conference co-chair, and a lifetime individuals with projects and has published the results in TASH member. significant textbooks, chapters, and journal articles. She disabilities in all served as Coordinator of the California aspects of life has Research Institute on the Integration of 18" Continued on page 26 PAGE 25 TASHNewsletter,June/July 1998 1998 BOARD ELECTION
1998 BOARD ELECTION shop for 6 years and as a young adult lived in States to participate in a leadership develop- Continued from page 25 a group home with 9 other people for 4 ment program. It was at that time that I years.I first discovered my interest in self- really began to learn about all the wonderful JANIS advocacy when I wanted to exercise my right work that was being done in this country CHADSEY to vote and sought the assistance of a People One of the results of my trip to the United Janis First advisor. My involvement in self- States is that I met my wife and moved from Chadsey has been advocacy work became statewide in 1989. In Mexico to Berkeley, California.I became a TASH member 1993 I was elected to a two-year term as involved in numerous activities including for 20 years and President of People First of Oklahoma. I was Fiesta Educativa, an organization to help has long been also elected as the first consumer board Latin parents who have children with concerned with member for the Tulsa chapter of the Arc and disabilities.I began to learn about the many facilitating the went on to serve on the Arc US Board of problems these people face in this country communication Directors. and have been working with them to help abilities and social In 1995, 1 was selected to work as a ensure that parents are aware of their rights relationships of persons with disabilities. She Vista Volunteer for People First of Oklahoma. so that their children can obtain a quality has worked as a speech and language I also served on the Oklahoma Developmen- education. Since moving to the D.C. area, I clinician in the states of Oregon, Washington, tal Disabilities Council. I received a number have become involved with and am serving and Illinois, and is presently an Associate of awards for my work in Oklahoma and in on numerous boards of directors including Professor in the Department of Special 1996, Governor Keating proclaimed the Maryland Coalition for Inclusive Education at the University of Illinois. In her December 9th as James Meadours Day in Education, the Latin American Youth Center, present position, Janis works with colleagues honor of my work on behalf of people with Grupo Esperanza, National Family for the in a program that prepares personnel to teach disabilities in Oklahoma. Advancement of Minorities with Disabilities students with severe disabilities in inclusive As a result of my national commitment and the D.C. Statewide Independent Living classrooms. In addition, Janis is affiliated to the self-advocacy movement, I was elected Council. with the Transition Research Institute where Treasurer and Regional Representative for the I am very interested in serving on the she has conducted research focused on social national self-advocacy steering committee, TASH Executive Board because I believe I integration issues involving youths and Self Advocates Becoming Empowered have a lot to offer regarding the needs of young adults in high school and employment (SABE). I went on to become the SABE Latin people with disabilities and their contexts. In particular, she has taken an National Co-Chair and have served in this families.I am bilingual, have experience ecological perspective toward studying social capacity since 1996. I am also presently the working with Latin families and my account- interactions and relationships recognizing the Co-Chair of the Young Leaders National ing skills will be helpful to the Board. For mutual influences that environments and Conference. myself I look forward to the opportunity to people have on one another. Janis has been I have been an active TASH member for be able to learn from the members of TASH the recipient of several federal grants, has several years and am enthusiastic about the in order to continue to help improve the published numerous articles and chapters, opportunity to serve on the TASH Board. I quality of life for Latins with disabilities and and was recently an Associate Editor of JASH. would like to bring my national experience their families. Janis is interested in serving on the with the self-advocacy movement and my JIM Executive Board for three reasons. First, she skills developed from serving at the national LINDA wants to ensure that TASH is viewed as an level to the TASH Board. I think I have what RAMMLER open and inclusive organization that it takes to make a difference, I see people as I have been welcomes a diverse membership to all who people first, I see people's abilities, and I am serving ex officio are working to improve the lives of persons committed to taking the time to listen to and on the TASH with severe disabilities. Second, she wants to work hard for all of the members of TAS1-L Board of continue promoting the valued perceptions Directors since of people with disabilities at local, state, and JORGE 1995 and would federal levels by having people with disabili- PINEDA like to be a voting ties set the agenda for this activity And third, My name is member of the she wants TASH to remain an organization Jorge H. Pineda. I Board because of that is not only respected for its work on am from Mexico the important issues faced by TASH today behalf of individual citizens with disabilities, City and have One of the best ways of telling you a but is also respected for its work in scholarly been living in the little more about myself is to quote the vision and creative endeavors. United States and values statement of the consulting firm I since 1992. I am co-direct: JAMES an accountant by "Rammler & Wood, Consultants, LLC, MEADOURS profession and is committed to person-centered and family- I am the Self- currently work at the National Council on centered supports. We pride ourselves on Advocacy Independent Living in Arlington, Virginia.I achieving these through innovative ap- Coordinator for have been disabled since birth and have been proaches. We believe that all human beings the State of involved in the Disability Rights Movement have natural gifts on which to build. We Louisiana, Office since the late 1980's. believe that all human beings also have for Citizens with In Mexico I worked with other self- common needs for physical well-being, Disabilities.I was advocates to set up an organization to fight safety, belonging, feeling good about placed in a for the rights of people with disabilities. In sheltered work- 1991 I was invited to come to the United Continued on page 27 PAGE 26 18bTASH Newsletter, June/July 1998 1998 BOARD ELECTION
1998 BOARD ELECTION mission in life to ensure that a dignified an expert witness for the Hartmann case in Virginia federal court, as well as several Continued from page 26 lifestyle, with all the freedoms, rights, privileges and fun is afforded to individuals others. themselves, and success in their personal who are most as risk of having it taken away Fourth, Patrick is also currently on the aspirations. We believe in self-determination or having none at all in the first place. Illinois TASH's Governing Board and has by the individual and, where appropriate, Patrick received his teaching degrees enjoyed the sheer dedication and energy of his/her family We believe in reliance on under Lou Brown and Anne Donnellan at the constituency "We are definitely kindred natural circles of support to the greatest the University of Wisconsin, Madison. He spirits in TASH; these people are family" "It extent possible in assisting the individual to continued to work with Lou Brown for both is a supreme honor to be nominated for the plan and access 'whatever it takes' to achieve his Master's and Doctoral Degrees. "Lou International TASH Executive Board!" his or her desired quality of life. Our vision taught me major lessons about upholding "TASH means three things to me: people, is that every human being's needs are met quality of life with a passion that you cannot innovation and quality" satisfactorily and that each individual find anywhere else!" achieves a lifestyle that is meaningful and Currently, Patrick accomplishes his DAVID SHAW fulfilling within a community that celebrates mission in life in four ways: First, Patrick is I have human diversity" a Professor and Chair of Special Education practiced law in I do a lot of things professionally (such at National Louis University Chicago, Hartford, as teaching, consulting, testifying) and Illinois. "We are critically promoting and Connecticut for personally (in my adult relationships and in teaching skills each and every educator twenty-five years. parenting my four kids) to try to make this needs:supporting ALL diverse learners My practice statement come true.I like to think I have from womb to tomb, promoting collabora- includes cases boundless energy and, as age tempers that a tive relationships, creating curricular/life involving civil bit, boundless creativity in suggesting how adaptations and implementing assistive rights of persons others (like TASH staff) can direct their technology" He also chairs a monthly with disabilities, energies! program area forum which brings together special education My commitment to TASH has been individuals from Early Intervention, and malpractice long-standing I've been a member since Elementary Education, Technology, Middle cases.I have concentrated my law practice 1982, I've presented at regional and national Level Education, Educational Psychology on issues affecting persons with disabilities conferences since 1987, and I've been on the and Foundations & Research to coordinate for twenty-three years. My first case New England Chapter Board since 1990. I teacher training with Special Education. involving disability-related issues, filed in continue to advocate for strong Chapter "Yes, we are becoming inclusive at the 1976, compelled the State of Connecticut to input and I've represented TASH and SAFE University level!" "This type of service purchase exclusively wheelchair-accessible in public testimony and other activities. delivery will reflect a new era for University standard size buses. Everything worthwhile that I know about educators." Some of my other better-known cases disability activism was taught to me by others Second, Patrick is Director of UCP/ include C.A.R.C. v Thorne a case that who were TASH members. In return, I want Infinitec/Empowerabilty Human Service resulted in the closure of Mansfield to be involved in making TASH accessible Agency in Oak Park, Illinois. "This position Training School and community placement and available to everyone else.I want TASH is all about making connections for of its 1,200 residents; Messier v. Southbury to grow in membership and excitement, to be people...into their neighborhoods, commu- Training Schoola case that seeks decent financially viable, to have its integrity to nity, workplaces and society" (adult living conditions and community place- remain intact, and to grow in name recogni- inclusion)! "There are countless gifts all ment for the 750 residents of Southbury tion and respect.I would like the opportu- individuals with challenges offer everyone, Training School; ARC/ Connecticut v. nity to represent the TASH constituency on and doors have to be built and opened." Tirozzia case that seeks regular classroom the Board formally so that these outcomes Third, Patrick owns his own educa- placements for the 3,000 children of can be realized. Thank you! tional consulting business, Creative Connecticut who have a label of mental Culture Consulting, Inc."I love to be out retardation; and Brain Injury Association of PATRICK in the world where it all happens and Connecticut v. Solnita case that seeks SCHWARZ consulting lets one share in many lives and decent conditions and community Ever since stories, and hopefully make a difference." placement for persons with brain injuries being a child with He has presented and consulted for ASCD, currently living in state psychiatric the "so-called" AIMS, TASH, ICASE, etc., significantly hospitals. challenges of valuing his work with general education I have also successfully resolved being interested organizations. "The meeting of the minds approximately sixty cases that have sought in many things at must evolve and become strengthened." full-time regular classroom placement for once and This year Patrick also represented the children with significant disabilities, and displaying United States for a Pan American Confer- am currently pursuing a case in federal boundless energy, ence in Argentina. "A group of phenom- court which challenges Connecticut's Patrick Schwarz enal leaders in Argentina are working very refusal to recognize facilitated communica- has personally hard to provide inclusive education, tion in connection with the development known and experienced prejudice, loss of transition services, and supported employ- or implementation of a vocational rehabili- rights and individuals who call themselves ment to individuals with significant tation plan. professionals that do not put people first. challenges." Patrick testified before the Through self-advocacy, coping mechanisms, United States House of Representatives on belief and positive power, it is Patrick's the reauthorization of IDEA. He ylsii was Continued on page 28 PAGE 27 TASH Newsletter, June/July 1998 1998 BOARD ELECTION
1998 BOARD ELECTION September. and public schooling they enjoy Continued from page 27 I have tried to make a contribution to I have presented at annual TASH the field through my writings. Because of conferences, written for the JASH journal, JACQUE my good fortune to live in Vermont, a state reviewed conference proposals, and now THOUSAND so pivotal to the "inclusion revolution," I hope to serve TASH in a way which will Itis the have had the opportunity to write about allow my experiences to assist the Executive greatest honor to some of the "best practices" that have Board and the entire TASH community to be nominated for emerged to support inclusive education in promote the perspectives of individuals with the TASH Execu- journal articles, chapters, and books. At disabilities in policy, legislation, and other tive Board, TASH this time, Richard Villa and I are updating advocacy avenues. being one of the Restructuring for Caring and Effective most progressive Education: An Administrative Guide to DEBORAH disability rights Creating Heterogeneous Schools, a book which TWEIT-HULL organizations in will bring to the field some of the latest Currently, North America and thinking of the family and professional Deborah serves one with which I am proud to have been leaders in inclusive education and self- as a Co- affiliated since its early years. determination in the U.S., Canada, and Director of the Since the early 1980s, I have been Norway California actively involved with advocacy efforts to I have been a teacher educator since Statewide instill and install the ethic and practice of 1981. At the University of Vermont, I Systems Change full citizenship of children and youth at coordinated an early childhood special Project on disadvantage or risk because of perceived education teacher preparation program and Inclusive disabilities and other conditions. As (following the Homecoming Project) one of Education. She has worked closely with Coordinator of the Vermont Homecoming the first 'Inclusion Facilitator' graduate families, teachers, students, and administra- project from 1983-1986, I witnessed programs (1986-1996) in this country. tors in the development of inclusive schools educators' and community members' beliefs With my move in 1996, to California State and practices at the school, district and state and practices tranform from disbelief that University San Marcos, I now coordinate an levels. In the area of teacher preparation, children with significant disabilities should exciting teacher credential program which Deborah has also coordinated the Intern or could be educated in their local home dually endorses graduates as general and Teacher Program, a personnel preparation school classrooms to genuine valuing, special educators and, thus, enables them to grant that was a collaborative effort between welcoming, advocacy, support, and advocate for and support students with the San Diego City Schools and San Diego successful accommodation of the educa- disabilities as either classroom teachers or State University and teaches teacher tional and social needs of every student special educators. As a new Californian, I preparation courses in the Department of involved in the project. These early efforts continue my commitment to community Special Education at SDSU. led to statewide changes in educational development by working with leadership "Inclusion should not end when a practice which have served as a model for and staff of local schools to restructure student graduates from the public school other states to effect change toward 'Special Day Class' programs and move the system" she states. Active in creating inclusive education from the inside out and teachers and students in these classes into inclusive options for adults with disabilities the top down. the mainstream. I also am an new member as well, Deborah (along with Mary Ellen It was my involvement in the Home- of the Advisory Board of the California Sousa) is the co-creator and Co-Director of coming Projectwhat now is referred to as Confederation on Inclusive Education, a Creative Support Alternatives, an agency the 'inclusion movement'that solidified confederation which links public schools, that provides supported living and commu- my human rights values and reinforced the universities, organizations, state department nity employment services to adults with importance of being an active member and of education personnel, advocacy groups, disabilities in San Diego. "Creating and officer in local and state advocacy organiza- and legislators in efforts to promote establishing services that are not only tions (e.g., Vermont Citizen Advocacy, inclusive education for children with responsive to but actually directed by Vermont CEC, Vermont ARC). This service disabilities. individuals with disabilities is paramount." interest quickly expanded to national and Finally, my interest in supporting Self-determination and control are the focus international arenas and led to long-term children of diverse characteristics led me to of a Robert Wood Johnson "Indpendent advocacy relationships with Honduras and adopt a 15-year-old Cambodian refugee 16 Choices" grant aimed at the development of the Slovak Czech Republics. Since 1991, I years ago. When my son, Chang, came to consumer co-operatives for personal have worked with the Honduran Pedagogi- live with my family, he had no English and assistance services in California. Deborah is cal University, Ministry of Education, and virtually no schooling, as he had lived in the local facilitator for that effort in San key human services agencies to develop concentration and refugee camps since nine Diego. teacher preparation curriculum which years of age. During his four years of high "I would be honored to work with the enables the inclusion of students with school in the U.S., our family became TASH membership to expand the diversity disabilities in the country's very poor yet actively involved in ensuring that Chang of its membership, enhance its visibility, and public schools. With the advent of the was educated in general education rather establish alliances with groups and organiza- 'Velvet Revolution' in Czechoslovakia in than alternative programs. We experienced tions that share TASH's commitment to the 1989, a similar partnership developed with the "family perspective" of being the values of inclusion, self-determination and Charles University in Prague, Czech squeaky wheel for inclusion. Today, as a social justice." Republic, resulting in the first Eastern grandmother of three Kahmer-speaking Europe Human Rights Conference being children, my family continues to closely held at Charles University this past watch and celebrate the language emersion fAS PAGE 28 150 TASH Newsletter, June/July 1998 1998 BOARD ELECTION
TASH 1998 Election of Five (5) EXECUTIVE BOARD MEMBERS Term of Office: 1998-2001
OFFICIAL BALLOT
There are five positions for members of the TASH Executive Board to be filled this year. Positions will be filled via ballot by dues-paying TASH members (one each) in accordance with the Association's By-Laws. The Executive Board member-elects will begin their terms at the Annual Board Meeting held in conjunction with the 1998 TASH Conference, December 2-5 in Seattle, Washington.
Ballot Instructions: You should vote for a total of FIVE nominees. Ballots containing more than five votes are invalid. Please mark your ballot in ink.
11 Jacki Anderson 11 Jorge Pineda 1-1 David Shaw
El Doug Biklen 1 1 Linda Rammler Li Jacque Thousand Li Janis Chadsey 11 Patrick Schwarz [1 Deborah Tweit-Hull Li James Meadours
For information about the candidates, please refer to pages 25-28 of this issue of the TASH Newsletter.
Mailing Instructions: Ballots can be returned using this postage-free mailer, or originals of the ballot can be sent in an envelope. If you elect to use an envelope, please be sure the word BALLOT is printed on the front. If you use an envelope, please do not place anything other than your ballot inside; your envelope will not be opened until the counting of the ballots.
VERY IMPORTANT: ONLY AN ORIGINAL BALLOT WILL BE CONSIDERED VALID. PHOTO COPIES OR FAXES WILL NOT BE ACCEPTED.
Ballots must be received at the TASH Central Office by SEPTEMBER 30, 1998
Mail your completed ballot to: TASH, 29 W Susquehanna Avenue, Suite 210 Baltimore, Maryland 21204 Attn: Ballot 191 PAGE 29 TASH Newsletter, June/July 1998 11
FOLD BALLOT HERE
NO POSTAGE NECESSARY IF MAILED IN THE BUSINESS REPLY MAIL UNITED STATES FIRST-CLASS MAIL PERMIT NO. 1896 BALTIMORE MD POSTAGE WILL BE PAID BY ADDRESSEE
TASH 29 W. SUSQUEHANNA AVE., STE. 210 BALTIMORE, MD 21204-5201
1 9 2 staple or tape your completed Ballot JUNE/JULY 1998
The Serena Merck Memorial Award for Innovation and Dedication in Practice
Purpose of the AwardThe Serena Merck Memorial Award is given annually to an exceptional individual who has demon- strated long-term, selfless dedication and compassion in the care or service to children who have retardation and significant mental health problems. Mrs. Merck recognized the critical importance of what quality day-to-day care provided by committed individu- als can make to children with cognitive and behavioral disabilities. The John Merck Fund has established this major, national award to honor her long-standing commitment to this field, and to call attention to the invaluable role caring individuals play in it. Criteria for Selection of the AwardeeProspective awardees should meet one of the following categories: (1) Provides, as an employee or volunteer, services for children who have mental retardation and significant mental health problems. (2) Demon- strates long-standing commitment and innovative care of this population which has positively affected their quality of life and/or life opportunities. Submission Guidelines Organizational entities may nominate prospective awardees. One nomination per organization is permitted, although multi-service organizations may submit one nomination from more than one service unit. No self-nomina- tions are acceptable. Only organizations serving children with mental retardation and significant mental health problems are eligible to nominate an individual. A 500-word summary of the reason the candidate is nominated, length of service in the field, and a description of the person's impact on children with mental retardation and significant mental health problems is required. At least two, but no more than five, accompanying letters of reference from individuals well qualified to evaluate the candidate's suitability for the award should be provided. Nominations should be mailed before September 30, 1998, to: Mr. Francis Hatch, The John Merck Fund, 11 Beacon Street, Suite 1230, Boston, MA 02108 Award A $5,000 cash award and plaque will be presented to the awardee at the 15th Annual National Association for the Dually Diagnosed (NADD) Conference held November 4-7, 1998, in Albuquerque, NM. The awardee's travel expenses to the con- ference will also be covered.
St. John's Community Services and University of Maryland's CRP/RRCEP present Moving to Coinmonity Based Adaptive Servwes: Solving the' Pkzzle MaltTM Trai9ing-ConfereriCe 'September 24 & 25, 1998 ADAPTIVE EQUIPMENT Washington, DC ON DISPLAY Keynote Speaker: Strategies for: http://www.adaptivemall.com Cary Griffin Adult Ciay Services University of Montana Ethployment Strollers, Psychiatric Rehabilitation Adaptive Seating, Community Living. Tables and Trays, Education Walkers, Adaptive Car Seats, Early Intervention Bathing, Toileting, Rolls and Wedges, For Registration Information: Positioning, and 202-339-6085,phone "Wheeling." 202-298-8065 fax cwesley @ sjcs.org
BEST COPY AVAILABLE PAGE 31 9 TASH Newsletter, June/July 1998 INDEPENDENT LIVING
During the late 1970s, people with disabilities began to organize themselves into political pressure groups. They were fully aware that if they were to succeed in reversing the situation of alependent abandonment or institutionalization practiced on them throughout history, it would be as a result of their own efforts. The struggle for their rights, for equal opportunities without privileges or paternalism, started in the 1980s, in Livin Brazil as well as in the rest of Latin America, which was recovering from Movement THE similar periods of authoritarianism. In 1979, motivated by the appoint- BRAZILIAN ment of 1981 as the International Year In Latin for People with Disabilities (IYPD), EXPERIENCE organized groups run by people with disabilities came together to discuss the America matter. As a result, in 1980, Brazil hosted the first National Meeting of BY ROSANGELA BERMAN-BIELER Entities of People with Disabilities. Nearly one thousand participants History of the Disability Rights attended, among them representatives Rosangela Berman-Bieler is a Brazilian Movement in Brazil for people who are blind, deaf, physi- journalist, publisher and disability rights advocate. Founder of the Independent Living cally disabled and those with Hansen's Movement in Brazil, she is also a founding until the mid-1970s, the disability disease (leprosy). member and former president of ONEDEF issue in Brazil was a subject Guidelines for action and the (the Brazilian Organization of Persons with restricted to people considered formation of a National Coalition were Physical Disabilities), and CVIRJ (the Center specialists in the field. People with for Independent Living of Rio de Janeiro), established in an attempt to encompass where she currently serves as Honorary disabilities questioned the paternalistic, all areas of disability. Moreover, a new President. Ms. Berman-Bieler was formerly charitable and guardianship relations. policy was defined for the year following Rehabilitation International Deputy Vice Up until that time institutionalization President for Latin America, and is editor of the IYDP. This policy consisted of several newsmagazines on disability issues. was the most popular and sought after representation by people with disabili- Berman-Bieler has served as an expert solution. ties themselves and no longer by the to the United Nations on disability issues With its huge geographic dimen- from the Latin American perspective. She self-appointed "specialists." was a member of Disabled People sions and serious socio-economic This new political stance was so International's (DPI) Independent Living problems, the fifteen million Brazilian strong that it provoked a revolution in Committee and served on DPI's Latin citizens with disabilities realized that the field of disability, generating consid- American Regional Committee. they could not rely solely on profession- Currently living in Washington, D.C., erable animosity between the entities Berman-Bieler recently served as the Event als, or count on a change in government then defined as "of' and those defined as Coordinator of the International Leadership attitude. They were also aware that they "for" people with disabilities. The Forum for Women with Disabilities, held in could not reasonably expect the general Bethesda, Maryland.Berman-Bieler question of representation reflected not operates her own business, Third Millennium population to place issues of disability only on social aid institutions, but also Events, through which she produces and edits among immediate social priorities. on the groups of people with disabilities publications and provides disability-related The international wave of the self- consulting services.One of her current disputing representation for each area responsibilities is the newsletter "One-In- help movements and the re-organization and equal rights in the National Coali- Ten," a collaborative effort between of Brazilian society at the end of a tion. Rehabilitation International and UNICEF on twenty-year period of military rule During the next three years repre- childhood disabilities. sparked the minds of leaders with Berman-Bieler has been a quadriplegic sentation was exhaustively discussed in since an automobile accident in 1976 and disabilities who decided to mobilize meetings held throughout Brazil.It was uses a wheelchair their fellows to change the then prevail- ing mentality on disability issues. Continued on page 33 PAGE 32 194 TASH Newsletter, June/July 1998 INDEPENDENT LIVING
INDEPENDENT LIVING movement surpassed national borders Continued from page 32 and ONEDEF represented Brazil at To become competitive Disabled Peoples International, by way and reintegrated into the then agreed that national entities for of its Latin American Council. People each area of disability should be created with visual disabilities became affiliated economic mainstream, and that these would convene in a with the World Blind Union (WBU) and people with disabilities Brazilian Council with equal representa- with the Latin American Blind Union tion. (LABU). Similarly, people with hearing have to exercise the values 1984 was a crucial year for structur- disabilities, through FENESIS, are now of independent living as well ing the organization. A series of entities part of the World Federation of the Deaf, as their constitutional rights. were founded: Brazilian Federation of expanding their political influence and Entities of the Blind (FEBEC); National improving their leadership. They must make decisions Organization of Entities of People with A change in attitude with relation to about their own lives. Disability (ONEDEF); National Federa- people with disabilities was the result of tion of Education and Integration of the work undertaken by these leaderships The process begins with the Deaf (FENESIS); and the Reintegration during the '80s.. Paternalism gave way rehabilitation process. Action Group of People with Hansen's to equal opportunities. Full citizenship This is achieved through Disease (MORHAN). Additionally, a replaced guardianship. Brazilian Council of Entities of People Strong pressure from disability information, education and with Disability was founded in Decem- advocates and the United Nations, activities related to their ber of that year to aggregate the four through the UN International Year entities. (1981) and later, the UN Decade of participation in an This entire organizational structure People with Disabilities (1983-92), inclusive social life. was solely devised and managed by prompted governments to create offices persons with disabilities under the to coordinate inter-ministerial policies motto "Full Participation and Equality," covering disability Gradually, society as launching a self-help action plan in a whole began to address all issues disabilities to make their own social Brazil for a group which until then had related to disability more directly contribution, they must gain access to been tutored by the State and charity Political parties committed to the society by leading a full, participatory, institutions. cause began to emerge, many of which and independent life. The best way to An interesting change with respect counted among their founding members accomplish this is through information to the domination of this field occurred advocates with disabilities and later and empowerment. under the new approach. The Rehabili- candidates who are today serving as tation Centers and Special Education members of Congress, Counselors or Lih 4hrough schools, which until the advent of the Mayors of their cities. LegisicaUSon in Firazii IYPD spoke for disabled people, lost a A recent Federal Law in Brazil As a consequence of the growing great deal of their representation. This moved the disability cause forward, and self-help movement and its demands, change was especially delicate for the media began giving significant the government began to structure itself entities of the mentally ill, since many visibility to the issue. Based on an in order to assist people with disabilities. were represented by parents and all of "active participation and equality" In 1987, then President Sarney issued a them were classified as "for," hence they philosophy, technicians and profession- decree creating the National Coordina- were initially excluded from the group. als began to modernize their charity/ tion for Integration of People with New associations "of" people with welfare attitude. Disability (CORDE), which was formally disabilities sprouted all over the country, Nevertheless, essential changes in recognized by Congress in October gaining respect from the community. In the very foundations of society are 1989. spite of this, rivalry between different crucial to change the current reality of The law assigns the government the areas of disability continued. The people with disabilities in Brazil. A real task of defending the interests of people Brazilian Council tried to survive for a process of social transformation that with disabilities through the creation of couple of years but succumbed to the would positively affect all other disad- CORDE, and also defines prejudice lack of interest of associated entities. vantaged groups of the population is against people with disability as a crime. The new way became "each group on its needed as well. Brazil's new Constitution, revised in own." In order to enable people with 1988, has in all of its chapters positive During the 1980s, the self-help Continued on page 34 PAGE 33i9.i TASH Newsletter, June/July 1998 INDEPENDENT LIVING
INDEPENDENT LIVING reason why citizenship and civil rights of volunteer work throughout the civil Continued from page 33 are distant concepts to the majority of rights movement, it was of key impor- the population. Even with many legal tance to develop a methodology to measures related to disability now found organize services that could enhance the The concept of in national, state and city laws, there is quality of life as well as an awareness independent living inBrazil still only a small portion of people with of both people with disabilities and disabilities who have access to these Latin American society as a whole in is now beginningto be benefits. an orderly, objective and professional understood. Formany people way with disabilities itmeans How the Independent Living Movement Started in Brazil Which Independent Living autonomy to deal withone's After a period of intense activity and Movement Are We Talking About? own life, and to contribute enthusiasm experienced by advocates "Are there differences between the to the improvement with disabilities during the first half of disability rights movement and the the UN Decade for People with Disabili- independent living movement in of society. ties, in 1987-88 the disability movement Brazilian and Latin American Cultures?" began to decline in many parts of the There are no conceptual differences but, world due to a lack of new leadership rather, strategic ones. Clearly the and new challenges. disability rights movement, based pieces of legislation calling for In August 1988, some Brazilian mostly on volunteer advocacy work, improved transportation systems (to leaders with disabilities, looking for new created the basis and social environment include easy access) and an enlarged job approaches for the movement, had their for the independent living movement. market for people with disabilities first contact with an Independent Living The difference between one and the most of which has yet to be totally Center in the USA. They compiled a other is that the disability rights move- implemented. vast amount of information, and adapted ment has never delivered any direct or People with disability have their its concepts and services to the Brazilian indirect services to individuals with working rights guaranteed by the reality Four months later, the project disabilities. The disability rights Constitution, which sets aside a number was completed: The Centro de Vida movement's strategies were geared to of positions in the civil service and Independente do Rio de Janeiro (CVIRJ) generate public awareness regarding the prohibits discrimination in recruiting had been established. This private, non- existence of a significant segment of criteria or wages. Regarding equal rights profit cross-disability organization society that had thus far been largely in education, the State must provide totally managed by advocates with ignored. adequate installations for education, disabilities was founded on Decem- Additionally, the movement pro: preferably in the public system. ber 14, 1988 in Rio, Brazil. posed the creation of laws aimed at Access to public services are Prior to its creation, CVIRJ's team of defending the civil rights of its constitu- addressed by the elimination of architec- advocates with disabilities and techni- ents, all while establishing political tural barriers, regulation of building cians had been working together for influence to ensure that their demands codes and the adaptation of public areas almost 20 years to attain the social were heard. in addition to the manufacturing of emancipation of people with disabilities Advocacy leaders focused their public transportation vehicles capable of through proactive political demand for efforts at the entire segment of people accommodating the needs of people their rights and through the support with disabilities, never on an individual with disabilities. work carried out by these self-advocates basis. As a result, they were not practic- The above represents an overview of and their families. ing independent living or realizing what specific chapters in the law which, The lack of available time to could be done to improve their quality supplemented by other articles in the perform "mere" volunteer work, the of life. Constitution, prohibit prejudice and need to establish professional status in Prior to the Independent Living guarantee all citizens' rights while this field, and the lack of financial Movement, concepts and services such promoting the integration of all Brazil- resources, among other difficulties, gave as: peer counseling; personal assistance; ians. Unfortunately, in reality in most the impulse to the creation of the first personal autonomy; people with Latin American countries the institutions Center for Independent Living in Brazil disabilities providing services to their are weak, and the system tends to be and Latin America. Based on the peers and to the community; centers for corrupt and slow with respect to experiences acquired during many years accomplishing law and justice.It is the Continued on page 35
PAGE 34 196TASH Newsletter, June/July 1998 INDEPENDENT LIVING
INDEPENDENT LIVING world. Self-motivated and working in through this movement can be "cost free" Continued from page 34 their spare time, these leaders had little if shared under the supervision and the opportunity to develop strategies commitment of people with disabilities. independent living staffed with people concerning new concepts or a new with disabilities; leadership training; and philosophy. Training was non-existent professional training programs were and improvements in their personal For additional information on the non-existent among the local or national empowerment was limited. Addition- Independent Living Movement in organizations. ally, they did not tap into the experience Brazil and Latin America, the Consequently, concepts of indepen- of senior fellows nor did they train author can be contacted via e-mail dent living created a new mentality, potential successors. After 10 years of at [email protected] dealing directly with the individuals intense advocacy practice, there were no with disabilities: emerging leaders capable of replacing "You should be in control of your them or to give continuity to the work own life." they had begun. "You should be capable of making The independent living movement BIBLIOGRAPHY decisions and choices about your life." emerged in a more suitable environment BERMAN-BIELER, Rosangela. "Independence does not mean that than the existing one during the late Etica e Legislacao: Os Direitos das you have to do everything by '70s. Better communication, exchanges Pessoas Portadoras de Deficiencia no Brasil, Rio de Janeiro, Brazil, Rotary yourself." and experience from their leaders' recent Club do Rio de Janeiro/CVIRJ,1990. "You should have the right to decide history led to a new strategy to achieve BERMAN-BIELER, Rosangela and the type of assistance needed for its goals. Unlike the previous approach, BIELER, Michael Cristian. Manual de your daily life activities and how to the focus now shifted to self-awareness Estilo: Media e Deficiencia, Rio de use your time for your own satisfac- and the empowerment of individuals Janeiro, Brazil, CORDE/MBES, 1991. tion." with disabilities to make personal and BERMAN-BIELER, Rosangela. De- "As a disabled person, you should ap- social changes. velopment and Underdevelopment: The ply your experiences to counsel peers The Brazilian independent living Disabled Women Issue in Brazil, Rio de Janeiro, Brazil, 1990. in similar situations as your own." strategies are based on dissemination of DEFNET Home Page - http:// qualitative and experiential information, www.montreal.com.br/defnet These concepts generated the line of support services, training of emerging _Lares_Brasileiros Agora Tern Mais services current provided by the Centers leaders and the improvement of civil Conforto e Higiene," 0 GLOBO, for Independent Living (CIL) in Brazil. rights advocacy All these have equal September 6, 1996, Rio de Janeiro, They constitute the "new face" of the weight in the process and must occur Brazil. disability rights movement, not only concurrently. CVIRJ. "Manuais do Curso de based on volunteer advocacy, but also in The concept of independent living Prontidao para o Trabalho," Rio de the empowerment of each individual in Brazil is now beginning to be under- Janeiro, Brazil, 1991. with a disability stood. For many people with disabilities Martinez, Kathy "Cultural it means autonomy to deal with one's Adaptations of the Independent Living Philosophy: Some Preliminary Observa- Conclusion own life, and to contribute to the tions," Portfolio '96, IDEAS 2000, RI/ In Brazil, an evolution of the improvement of society. The Brazilian WID 1, USA. traditional disability rights movement independent living movement focuses its CORDE. "Os Direitos das Pessoas brought into existence the independent efforts on the values within each Portadoras de Deficiencia: Lei No. living movement. Initially based solely individual: self confidence and the 7.853/89 e Decreto No. 914/93" - on advocacy, it progressed to the point "drive" to feel free and sufficiently Brasilia, Brazil, CORE/MBES 1994. where people with disabilities began to independent to search for her/his CORDE. "Situacao Atual da learn how to take charge of their own survival with dignity. Incidencia de Deficiencias, in, Politica lives. Later, this newly acquired knowl- The concept is expanding in Brazil, Nacional da Pessoa Portadora de Deficiencia"Brasilia, Brazil: CORDE, edge was applied towards improving the assuming an important role in commu- 1994. quality of life of their peers. nities and setting the standard for the UNDP Human Development Report The disability rights movement movement's growth throughout Latin 1996, New York, Oxford, Oxford grew quickly, having as its basis the America. The independent living model University Press, USA, 1996. leadership of a few advocates in addition is successful and viable not only in to support from social and political developed countries, but the informa- elements of society from around the tion and empowerment that result f. BEST COPY AVALASLE PAGE 35 1 9 7 TASH Newsletter, June/July 1998 TASH NEWSLETTER
Priscilla Newton, Editor Policy Statement Executive Board It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION
Referred by: Name: Address: City/State/Zip:
Telephone: ( Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ 0 work address 0 home address college/library/school $200. 0 other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant ) Administrator/Adult Services (for whom payment of full fee would present a ) Administrator/Education hardship) $45. Family (group rate) ) Administrator/Other $136. Lifetime Member $1000. ) Adult Service Provider/Staff Add $10 for postage costs for members in Canada ) Behavior Specialist and $25 for members outside the U.S. and Canada. ) Case Manager Funds must be submitted in U.S. dollars and ) Early Childhood Services checks must be drawn on a U.S. bank. Add a $20 ) Educator/Teacher processing fee if check is not drawn on a U.S. bank. If you would like to charge your membership, ) Gov. Personnel (Federal, State, Local) please fill in the necessary information: ) Interested Individual/Advocate/Friend( ) Mastercard () Visa ( ) Discover ) Legal Services Provider Card Number ) Occupational/Physical Therapist ) Parent/Family Member Expiration Date ) Personal Assistant Signature ) Professional Public Policy Advocate ) Professor/Instructor (College/University)() I would like to arrange to spread my payments out. ) Psychologist Enclose 1/3 and you will receive 2 additional ) Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, ) Related Services Provider please provide the following information: ) Self-Advocate Department ) Social Worker College/University ) Speech/Language Pathologist Student I.D. Number ) Special Education Teacher/Support Anticipated year of completion Specialist ) Staff Development/Trainer () Add $15 if you are applying for an individual ) Student (College/University) membership or $30 if you are applying for an or- ) Supported Employment/Day Personnelganizational membership and also want to become a member of your local chapter. ) Other Please make check payable to: TASH cn Moving? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 T9 8 ,
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PAVMLABLE 1 C Ca AUGUST 1998 qr` -:=:7 Para Educators Life Lines in the Classroom 1998 Trainer-of-Trainer Sessions*
I Build in-districtresources II4 to ensure on-going paraeducator training by attending this 3-day workshop to become a OLifeLines trainer. *Offered by the authors: LeCONSULM6 Participants receive: ParaEducators: LifeLines in the Classroom Five Training Modules for Instructional Paraprofessionals Supporting Students with Disabilities in General and Special Education Classrooms Module 1Defining the Role of the ParaEducator Module 2Celebrating Similarities: Students with Disabilities Module 3The IEP Process: The Role of the ParaEducator Module 4Supporting the Instructional Process Module 5Behavior Improvement strategies Take advantage of 1998 training rates! For more details: Le...CavSuLnIVG P.O. Box 6049-747Katy, Texas 77491-6049 Telephone 281-395-4978Fax 713-973-1271 www.lrconsulting.com
PAGE 2 200 TASH Newsletter, August 1998 FROM THE EXECUTIVE DIRECTOR
TABLE OF CONTENTS Last yearKathleen Hannon, a teacher and parent from upstate New York wrote FROM THE EXECUTIVE DIRECTOR.. PAGE 3 to us, "I loved the conference! When I feel isolated and alone in my beliefs, I TENATIVE CONFERENCE AGENDA... PAGE 5 close my eyes and put myself back in KEYNOTE SPEAICERS PAGE 5-6 Bostonsurrounded by people who live LOCATION PAGE 6 and breathe inclusion for allit gets me through!" As parents, people with PRE-CONFERENCE ACTIVITIES.... PAGE 8-9 disabilities, students, administrators, IN-FOCUS STRANDS PAGE 10-11 researchers, teachers, adult service THURSDAY SESSIONS PAGE13 workers, and other disability advocates, From the Executive Director we all struggle with the gap between our TOURS PAGE 19 BY NANCY WEISS beliefs and everyday realities.I spent FRIDAY SESSIONS PAGE 20 most of my career in the disability field Each year, EXHIBIT HALL PAGE 26 the conference edition of feeling, as many people do, like a fish the Newsletter is eagerly awaited. For swimming upstream. Attending a TASH SATURDAY SESSIONS PAGE 28 members who have attended the TASH conference not only gives you a chance to CHILD CARE FORM PAGE 32 conference for years, as well as for people swim with the current (if only for a few REGISTRATION FORM PAGE 33 considering attending for the first time, this wonderful days!) but to see what's up Newsletter provides the first peek at an ahead in progressive, person- and family- invigorating array of sessions, round table directed disability issues and supports. TASH (formerly The Association for Per- discussions and special topic meetings. Make plans to come to Seattle now. sons with Severe Handicaps) is an inter- What you can't realize from reading the In addition to being an incredibly exciting national advocacy association of people conference schedule, profiles of keynote city to visit, there are few experiences as with disabilities, their family members, speakers, and descriptions of sessions confirming as spending time with other advocates and people who work included in this edition of the Newsletter, upwards of 2,500 people who share your in the disability field. TASH actively pro- is the incredible energy and sense of basic values, are open to all kinds of motes the full inclusion and participation belonging that attending a TASH confer- networking opportunities, and work as of persons with disabilities in all aspects ence brings to participants. you do, toward making visions realities. of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 108 or e-mail: [email protected]. Whom Do I Contact?? 111111--11 For issues of policy, chapter or committee support,or general concerns and suggestions, call: Nancy Weiss, Executive Director, at MISSION STATEMENT (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops,or technical assistance, *TASFI call: Denise Marshall, Director of Training and Technical Assistance,at (410) 828-TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, Building communities in which no one is Conference Coordinator, at (410) 828-TASH, Ext. 105, [email protected] segregated and everyone belongs; For questions about membership, conference registrationor exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100or [email protected] Forging new alliances that embrace diversity; For information on government affairs or fundraising/development, call:Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Advocating for opportunities and rights; e-mail:[email protected] For information on marketing and promotions, permission and reprints, Eradicating injustices and inequities; news- letter submissions or advertising, or publication sales, call: PriscillaNewton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, Supporting research and disseminating e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief,at Promoting inclusive education; (415) 338-6230, e-mail: [email protected] Don't forget to visit TASH's web site at http://wwwtash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities makethis form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706or sent via e-mail to: [email protected]. PAGE 32 0 1 TASH Newsletter, August 1998 AUGUST 1998
vkutures V V V 400). ? "I loved the '97 TASH Conference. 1) When I feel isolated and alone in my beliefs, I close my eyes and put myself back in Boston - ear surrounded by people who live and breath inclusion for all- and it gets me through."
Kathleen Hannon, TASH Member
TASHConference '98 IF MATT L 13, WASHING TO NI The 1998 TASH Conference is in Seattle, the place where TASH was conceived 23 years ago. No organization existed prior to the formation of TASH that believed that people with significant disabilities were capable and deserving of being fully participating citizens. TASH became the leading organization advocating for the inclusion of people with disabilities. Now, as then, TASH continues to be at the forefront of the fight for justice, equality, and the empowerment for individuals with disabilities and their families. Join Did You Know: us at the TASH Annual Conference, where the best The opening day of the of hearts and minds in the disability movement '98 TASH Conference, December 3, 1998, gather to provide and share cutting-edge informa- coincides with the day tion that inspires advocates, parents, and that the United Nation's professionals alike to understand, support, and General Assembly creatively move forward toward inclusive lives for has set aside to honor all. people with disabilities all over the world! Inclusion is about all of us, with our different We enthusiastically points of view, values, self-interests, and experiences. join them in that effort! Come, spend time with over 2400 others who believe in the values you do, and capitalize on the synergy that is TASH. Create Inclusive Futures - Together! For a summary of events and activites going on in Seattle, visit the website www.seeseattle.org
Advocacy Governmental Affairs Supports for Aging Adults Self-Advocacy Community Living Grassroots Organizing Managed Care Self-Determination Creative and Performing Arts Higher Education Management Issues Special Health Care in Communication Housing /Home of Your Own MiCasa/Personal Assistance Inclusive Settings Criminal Justice IDEA Monitoring & Enfomement Multicultural Issues Sexuality, Romance, & Dating Curriculum Adaptation IDEA '97 Regulations Paraprofessional Issues Spirituality Deaf Culture Impacting Legislation Personnel Preparation Transition from School to Work Dual Sensory Impairment Inclusive Education Strategies Positive Approaches to Special Health Care Needs Early Childhood Integrated Sports Behavior Change Students Who Severely Educational Reform Internet and Disability Qualitative & Quantitative Challenge Schools,Who Employment and Careers Issues of Death and Dying Research Do Not Have Labels of Family Issues Issues of Peace and Social Change Rehab Act "Severe" Disabilities Functional Assessment for Leisure and Recreation Related Services in Inclusive Urban Education Issues Behavior Change Life Transitions & Changes in Education202 _PAGE 4 TASH Newsletter, August 1998 1998 ANNUAL CONFERENCE Vlitures 1998 TASHI KEYNOTE SPEAKERS Thursday, December 3, 1998 James Banks James is a Professor of Education and Director of the Center for Multicultural Education at the University of Washington. He has written or edited 18 books in multicultural education and in social studies education. He is a past President of the American Educational Research Association and a past President of the National Council for the Social Studies. Early in his career, he was appointed by Secretary Casper Weinberger to serve on the National Advisory Council on Ethnic Heritage Studies of the United States Office TASHConference '98 of Education. The American Educational Research Association named SEATTLE. WASHINGTON James a Distinguished Scholar/Researcher on Minority Education. He has served as a consultant to school districts, professional organizations, and universities throughout the United States and abroad. Tentative Conference Agenda Sue Rubin Tuesday,December 1, 1998 Sue is a self-advocate diagnosed with autism 8:00 PM - 10:00 PM Registration Open and moderate mental retardation. She was educated in special day classes with some ,14 degree of integration until high school. At Pre-Conference Activities age thirteen, Sue was testing at a 2 to 2 1/2 Wednesday, December 2, 1998 year level; at this time, she was introduced 7:30 AM - 8:45 AM TASH Tech Registration to facilitated communication and made slow 8:30 AM 4:30 PM Club TASH Day Care/Youth Activities but steady progress. Over the years, Sue's skillful use of facilitated communication has 9:00 AM 4:00 PM TASH Tech Workshops grown. She graduated from Whittier High School as a fully included 9:00 AM 4:00 PMTASH Chapter Development and student with a 3.98 GPA and scored 1370 on her SAT. Currently she is Leadership Training a student at Whittier College and a consultant at WAPADH, an agency 2:00 PM -8:00 PM TASH Conference Registration that supports adults with developmental disabilities, where she 5:00 PM -7:00 PM Opening Reception in the demonstrates facilitated communication at monthly trainings. In TASH Exhibit Hall addition, Sue has published two articles in the Los Angeles Times and carried the Olympic Torch in 1996 as a community hero.
Thursday, December 3, 1998 Robert Williams 7:30 AM 1:00 PMRegistration Recently appointed by President Clinton, Bob 7:30 AM - 3:00 PM TASH Exhibit Hall Open is the Deputy Assistant Secretary for Disabil- 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities ity, Aging and Long Term Care Policy in the 8:00 AM - 3:15 PM Conference Sessions and Poster Office of the Assistant Secretary for Planning Presentations and Evaluation. For the past four years, Bob 3:30 PM 5:30 PM Plenary Session has provided strategic leadership as Commis- 5:30 PM -7:00 PM sioner of the Administration on Developmen- No-Host Reception tal Disabilities, a federal agency that funds activities to increase the independence, Friday, December 4, 1998 productivity, and community inclusion of Americans with developmental 7:30 AM - 11:00 AM Registration disabilities and their families. He is a nationally known expert on the best 7:30 AM -3:00 PM TASH Exhibit Hall Open ways to create supports for people with multiple disabilities to live, work 8:30 AM -5:45 PM Club TASH Day Care/Youth Activities and play in their communities. Bob has lived with cerebral palsy since birth; he believes in community 8:00 AM - not just as a place to live, but as a 3:15 PM Conference Sessions and Poster Presentations complete way of life for all. 3:30 PM 5:30 PM Plenary Session 5:30 PM 7:00 PM TASH Reception Friday, December 4, 1998 (sponsored by WA-TASH Chapter) Duane French Duane is the first person with a significant Saturday, December 5, 1998 disability to be appointed as a Division 7:30 AM 9:00 AM Registration Director with the State of Alaska. Prior to 7:30 AM 12:00 PM TASH Exhibit Hall Open his appointment as the Director of the 8:30 AM 1:00 PM Club TASH Day Care/Youth Activities Division of Vocational Rehabilitation, Duane 8:00 AM 12:45 PM Conference Sessions and Poster was the Executive Director of Access Alaska. He has served on numerous state and Presentations Continued on page 6
PAGE 5 TASHNewsletter,August 1998 211 1998 ANNUAL CONFERENCE
1998 TASH KEYNOTE SPEAKERS Continued from page 5 - LOCATION national boards, councils and commissions over the years. Duanewas the Chairperson of the Anchorage Equal Rights Commission, Very Seattle Sheraton Hotel and Towers Special Arts Alaska, and the Governor's Council on Disabilities. He was (Headquarter Hotel) a member of the Board of the National Council on Independent Living 1400 Sixth Avenue for 9 years and is currently the Legislative Committee Chairperson for Seattle, Washington 98101 the Federal Interagency Coordinating Council. Duane most proudly Phone: 206-621-9000 describes himself as a brother in the disability rights movement. Rates: Laura Hershey $123.00 Single$133.00 Double$20.00 Additional Person Laura is a disability rights leader, poet, Room tax is an additional 15.6% per night writer, and trainer. She educates and agitates whenever possible to promote the Washington State Convention and Trade Center rights of people with disabilities. She has (Location of Exhibits and Conference Sessions) organized social change campaigns and events around issues such as Social Security 800 Convention Place (1 block from Sheraton) work disincentives, economic justice, Seattle, WA 98101 206-727-2814 disabled women leadership development, and opposition to charity telethons. Her ALTERNATE HOTELS efforts have earnedher a Watson Fellowship, a Colorado College Seattle Hilton honorary degree, aWorld Institute on Disability Fellowship, and several Sixth and UniversitySeattle, Washington 98111 trips to jail for actsof civil disobedience. Laura lives in Denver, 206-624-0500 Colorado, with her partner Robin Stephens, and their dog at cat. Rate $112.00 single/double, plus 15.6% tax Judith Heumann $15.00 extra person As Assistant Secretary of Education for the 2 1/2 blocks from the Convention Center Office of Special Education and Rehabilitative Services, Judith manages the Office of Special Seattle Crown Plaza Education Programs, the Rehabilitation 1113 6th Avenue Seattle, WA 98101-3048 Services Administration and the National 206-464-1980 Institute on Disability and Rehabilitation Rate: $115.00 single/double,plus 15.6% tax Research. She is among those who pioneered 2 1/2- 3 blocks from Convention Center modern legislation recognizing that the U.S. Constitution guarantees equality of access AIRPORT and opportunity to persons with disabilities. Judith helped to develop legislation that became the Individuals with Disabilities Education Act. Seattle-Tacoma International Airport She helped draft the Americans with Disabilities Act and assisted in 16 miles south of Downtown developing regulations for Section 504 of the Rehabilitation Act. In Average cost for taxi $30, shuttle $18.00, bus $7.50 addition, she helped design federal and state legislation that led to the creation of more than 200 independent living centers nationwide. AIR TRANSPORTATION Judith's deep commitment to the goal of building an inclusive society Southwest Airlines will be the Official Airline for the comes from her own experiences; having been diagnosed with polio at 1998 TASH Conference the age of 18 months, she has known discrimination first hand. Judith was the first recipient of the Henry B. Betts Award for "efforts that Southwest is offering a 10% discount on significantly improve the quality of life for people with disabilities". most of its already low fares to and from the TASH December '98 Meeting. Call (or Zuhy Sayeed have your professional travel agent call) the Born in India, Zuhy moved to Lloydminster, Southwest Airlines Group Meeting Desk at Canada in 1978 where she began her career 1-800-433-5368, Monday Friday 8:00 AM - 5:00 PM, and Satur- in early childhood education. As parents, day, 9:30 AM 3:30 PM by no later than November 24, 1998 and Zuhy and her husband Raffath became refer to I.D. Code K1748 to take advantage of this offer. Call right active in the field of differing abilities in away as fares are subject to terms and availability. 1982; today their dedication to human rights and community living is a family GROUND TRANSPORTATION commitment. Zuhy was appointed to the Grayline of Seattle Airport Express President's Task Force on Inclusive Education and to the United Nations Panel of Experts for the Monitor- GrayLine of Seattle ing and Implementation of the Standard Rules for the Equalization of A DIVISION OF HOLLAND AMERICA LINE-VIESTOURS Frequent, fast, convenient Airport Express Service operates be- Opportunities for persons with disabilities. She firmly believes that it is tween Sea Tac Airport and the Seattle Sheraton and other down- only our collective advocacy that will ensure thatour family members are treated with fairness and dignity. Zuhy says that "this isan exciting time town hotels. Fares are $7.50 one way or $13.00 round trip. (TASH as we look to build bridges and discover ways that we can indeed work attendees will receive $1.00 off). Please notify Gray Line at least together as communities and nations with the collaborative vision that 48 hours in advance if you require wheelchair access. For more we share for our citizens". details call Gray Line Airport Express at 206-626-6088. BEST Cth'i PWALAbLt PAGE 6 2116 TASH Newsletter, August 1998 1998 ANNUAL CONFERENCE
1,99D Conference . Pre-coderence Symposiumon goctal Uents Dual Diagnosis Introduction to Dual-Diagnosis: Assessment and Management of Psychiatirc/Behavioral Conditions Wednesday, December 2, 1998 in Persons with Developmental Disabilities Opening Reception This special symposium, which is jointly sponsored by , in the-Exhibit Hall TASH and NADD (formerly the National Association of the 5:00-7:00 PM Dually Diagnosed) will be facilitated by Ann R. Poindexter.,a licensed physician, and Terrance McNelis, President of NADD. Dr. Poindexter is a self-employed health care management ThUrsday, December 3, 1998 consultant for persons with mental retardation and psychopatho- Sexual Orientation Interest logic diagnoses. She has practiced, researched, and presented extensively in topics relating to psychiatric diagnosis and and Action Group treatment of persons with developmental disabilities. This highly informative, interactive symposium will outline Hospitality Hour the overall incidence and importance of behavioral/psychiatric 5:00 - 6:30 problems in individuals with developmental disabilities. Related issues and topics to be discussed include: TASH Reception Common medical conditions, which are easily mistaken for behavioral/psychiatric conditions Sponsored by WA-TASH Chapter Common psychiatric conditions 5:00-6:30 Tools to facilitate assessment and diagnosis. Psychotropic medications Friday, December 4, 1998 The support persons role in psychiatric intervention and therapy TASH No-Host Reception The fee to attend this workshop is $85.00. Please use the 5:00-6:30 form on pages 5-6 to register.
Forum for Canadian University and College Faculty
The first annual Forum for Canadian University and College Faculty will take on place at December 4, 1998 at 8:00-9:00. The purposes of the Forum are: a)To provide an opportunity for TASH members who teach in Canadian Universities or Colleges to meet and share information about their educational, advocacy, and research interests, b)To facilitate cooperative partnerships among these individuals, and RALLY for Inclusion! c) To discuss strategies for raising the "Canadian profile" within TASH, which has historically Save timeon Saturday, focused primarily on issues for people with significant disabilities within a U.S. context.
December 5, 1998 1:00 PM All Canadian University and College faculty and those affiliated with such institutions are encouraged to For The Annual attend this historical meeting! Contact Pat Mirenda, Post-Conference Rally! University of British Columbia, at [email protected] for additional information or to make suggestions for Watch For More Details the Forum's agenda
PAGE 72 0 TASH Newsletter, August 1998 TASH TECHS
TASH TECH Pre-Conference Seminars Wednesday, December 2, 1998 9-4 (unless otherwise noted) Registration for pre-conference seminars is in Claire Mantonya, Gerald Glenn, creative strategies for upper elementary, addition to conference registration. For costs Rich Wilson, Paul Day middle, and high school inclusive see back of registration form on page 30. The project that is the basis of this classrooms: curricular issues, instruc- workshop is a very successful person- tional strategies, adaptations, modifica- T-1 Specific Strategies to Support centered planning and training project tions, and accountability. Friendships and Community which partnered people with and without Connections between Adults with disabilities as team members.. This 1-8 Alternative Assessments: and without Developmental workshop will include video clips, panel Innovative State Approaches Disabilities. discussions, and a practical toolkit that Jacqueline Farmer Kearns, Dee Spinhston, Angela Novak Amado includes everything you need to get Martha Toomey, Sarah Kennedy, Harold Full community participation includes started planning your own project. Kleinert, Mary Pat Farrell, Sue Bechard, friendships and relationships with a wide Sandra Warren, John Haigh variety of people. This workshop T-5 Fostering Social This session will showcase innovative presents very specific strategies and Relationships and Building Peer approaches from Kentucky, Delaware, practical "how-to" exercises successfully Supports (9-12 AM) West Virginia, Maryland, Colorado and used across the country to promote Marti Snell, Rachel Janney, Kenna Colley North Carolina. Panel representatives community belonging, valued social This workshop will present approaches will share this information in a full day roles, and friendships with community for building peer support and promoting agenda devoted to implementation issues. members. social relationships between students with and without disabilities. We will T-9 Creating Creativity 1-2 Navigating the Autism give opportunities for participants to John Irvin Treatment Maze apply concepts to case students. This is an interactive workshop that Pat Mirenda presents creativity as a holistic skill that This interactive workshop will provide T-6 Creating Inclusive Learning can be learned and developed. Creativity information about various treatment Communities: Curriculum, is more than just a way of thinking. It is approaches for autism as well as a format Community Building, and inclusive of how we think, act and speak for evaluating them, in a practical, non- Reflective Practice to one another and to ourselves. It is the confrontational format. The session will Lucille Zeph, Mara Sapon-Shevin, Mary Fisher skill of allowing oneself the freedom to assist parents and professionals to This session is designed to address some create. Participants will receive a understand the options available and of the questions that continue to chal- creativity kit to help facilitate their make informed decisions about their use. lenge families and educators who are ongoing creativity in the work and home interested in developing general educa- setting. T-3 Abuse and Neglect of tion classrooms where effective educa- Individuals with Disabilities: tional practices combine with effective T-10 Providing Effective Services Information for Practitioners community building strategies to create for Young Children with Autism: Wayne Crawford learning communities where all partici- Blending Approaches to Meet This session provides an overview of pants are valued and successful learners. Individual Needs (9-12 AM) abuse/neglect, examines roles and Ilene Schwartz, Susan Sandal, Bonnie responsibilities of practitioners in the T-7 Strategies for Successful McBride, Gusty Lee Boulware, Ann investigatory process, and explores how Inclusion in the Core Academic Galfinkle, Stacy Shook practitioners can act collaboratively to Subjects: Grades 4-12. The purpose of this workshop is to protect the interest of individuals with Kathy Gee, Kimberly Strain provide participants with an overview of significant disabilities. An interactive A general education, secondary teacher in strategies that are effective with young format and case studies will be used. the humanities and social sciences field children with autism and PDD. An will team with an inclusive schooling emphasis will be placed on blending the 1-4 A Toolkit for Involving People specialist to provide a lively workshop strengths of different disciplines to create with Disabilities as Project Leaders utilizing media, real classroom materials, Marilyn Bown, Tamera Dalton, Troy Pope, and activities. The focus will be on Continued on page 9 :2:06 PAGE 8 TASH Newsletter, August 1998 TASH TECHS
TASH TECH Action Research Methodology; in the establishing an environment that allows Pre-Conference Seminars afternoon, participants will be introduced people with disabilities to distinguish Continued from page 8 to a participatory action research frame- those who help from those who hurt. The work that empowers stakeholders in the workshop is completely practical and all programs that are effective and appropri- issue under study as active change agents questions are welcome. ate for young children. Issues that will be in bringing about school/program addressed include: curricular issues, innovations. T-17 Including Students with instructional strategies, and the role of Disabilities as Fully Participating peers and strategies to program for the T-14 From Networking to Members of the High School generalization of behavior change.* Netweaving Community Gary Donaldson, Cary Griffin, Stephen Sfehas Carol Tashie, Mary Schuh T-11 Understanding SSA This workshop focuses on how to Why students with disabilities should Disability Benefits: It's Easier transcend organizational boundaries in spend their high school career with all Than You Think! order to facilitate sustainable membership peers, and strategies for overcoming Paul Selby, Connie Ferrell of persons with significant disabilities in obstacles that cause students to spend Fear of losing SSI is a major concern of the fabric of community life. Netweaving time away from typical peers will be many individuals. The purpose of this is a metaphor for forming new patterns of discussed. What students should be sesion is to heighten awareness of both collaboration and partnerships between learning in classes; after-school; week- adult SSA disability programs and to diverse segments and sectors of the ends; and the transition to jobs will be present strategies for advocating for the community. Participants will learn how to discussed. individual with local SSA personnel. leverage existing community resources by using strategies that create and add value T-12 Funding Assistive for mutual gain. TC - TASH Chapter Technology for Young Children Leadership and (1-4 PM) T-15 Positive Behavioral Support Development Day Mary Jane Rapport and Its Application to IDEA This free leadership develop- This session will provide an overview of Rick Amado, Bobbie Vaughn ment session is for TASH federal laws and regulations pertaining to This session provides the most current Chapter Officers, chapter the provision of assistive technology resources and information regarding members and people interested devices and services to young children. changes in IDEA directly related to in forming or joining a TASH Relevant legal discussions and letters positive behavioral support, followed by Chapter. An interactive day, from federal agencies clarifying issues will a presentation of the positive behavioral which includes lunch for pre- be discussed.* support process. The format will be very registrants, is planned around interactive, and will concentrate on formal presentations on building T-13 Creating A Culture of contextual fit, functional assessment, and and maintaining community Inquiry: Participatory Action multicomponent support plans. The support, networking and Research Methodology target audience includes families, school building alliances with other Gail McGregor, Hyun-Sook Park, Jean personnel, and other support providers. organizations, building and Gonsier-Gerdin, Stacy Hoffman, Elizabeth strengthening international and Kozleski, Dick Sagor, Chris Salisbury, Anne T16- The Ethics of Touch chapter relationships, and Smith, Susan Whaley (9-12 AM) influencing policymakers. In this session, participants will be David Hingsburger Participants will have opportuni- introduced to participatory action research This workshop is aimed at persons who ties to share chapter accomplish- methodologies that are being used in two are required to provide physical assis- ments and discuss other issues federally funded projects that are actively tance in any form to a person with a of importance to chapters. exploring the link between policy, research disability. This interactive workshop will and practice.In both of these projects, address complex issues including: school personnel and other stakeholders affectional boundaries between care are functioning as active partners and/or providers and care recipients; provision *Registrants for T-10 or T-12 researchers, focusing their efforts on issues of intimate care while maintaining will be eligible to attend both seminars. of inclusion and school reform. In the respectful boundaries, avoiding poten- morning, participants will be introduced tially abusive situations or a situation that to the assumption's and mechanics of could be construed as abusive, and
PAGE 9 207 TASH Newsletter, August 1998 IN-FOCUS STRANDS
1998 In-focus Strands The TASH Conference is an incredible GOVERNMENTAL AFFAIRS, PUBLIC POLICY AND melding of people, topics, and information. GRASSROOTS ORGANIZING STRAND It is the place where cutting-edge dialogue (Thursday-Saturday) on disability issues is taking place. To help stream- Join us throughout the conference as we focus on the critical governmental, public policy line some of this cutting-edge information, TASH and grassroots organizing issues affecting people with disabilities and their advocates. members have taken the lead in organizing a sequence We will follow our "tried and true" model, which includes information sessions followed of sessions on identified topics areas. A strand sim- by discussion, needs assessment and an action plan for our work for the comingyear. ply means that the sessions will tahe place in the same During the 1997 Conference, our members chose passage of HR 2020-MiCASA and room , for a designated period of time. In addition to Implementation and Enforcement of IDEA as our governmental affairs, public policy and these focused strands, there are other sessions on these grassroots organizing priorities for 1998. Join in setting our course for 1999 by participat- topic area's occurring throughout the conference. Feel ing in the activities of this Strand throughout the Conference. free to attend an entire strand, or just selected ses- This year, for the first time, a special call went out for presentations for the Govern- sions within a strand. mental Affairs, Public Policy and Grassroots Organizing Strand. As a result, theseare some of the topics to look for:* Unlocking the Door to the Waiting List: Don't Just Sit There, Do Something! Getting Away With Murder Welcoming our Senior Caregivers Tia Nelis/Mike Auberger Dick Sobsey Thursday and Friday Strand Coordinator: Nancy Meltzer Strategies For Building A "Rehabilitating" the INS: Across the nation thousands of older families Statewide, Grassroots Network of Immigration Service Compliance continue to provide care for their loved ones with Parents and Self-Advocates with Section 504 developmental disabilities. This strand focuses Marna Ayres Thompson, Robin Bolduc, Steven Rosenbaum, Amy Kratz, Jill Dutton on the needs and interest of these senior mem- Bruce Goguen, Barbara Ramsour bers of our community It will highlight the ex- Grassroots Advocacy:Planting periences of two families involved in person cen- Achieving Autonomy Using Seeds of Change tered planing. The strand also addresses issues Supported Self-Advocacy Jadene Ransdell Laura Hershey surrounding the growing waiting lists which con- From Research to Policy-A sists primarily of aging families. Inclusive Education for Students Strategies Workshop with Behavior That Challenges Gary Bunch, Angela Valeo Community Living Schools: Legal Rights and Thursday - Saturday Systemic Advocacy Strategies Over-representation: Problem or Strand Coordinators: KenJupp, Patti Scott,Judith Snow Kathy Boundy, Eileen Ordover Symptom In this strand, presentations covering exciting Dorothy Kerzner Lipsky, Alan Gartner, Others and innovative approaches to living full lives in Standards Based Education the community will be featured. Topics include Reform and Assessment: Legal Context for Political Action Within housing, supports, self-determination, employ- and Practice Implications for the Lives of People With Mental ment and friendships. Students with Disabilities Disabilities Kathy Boundy, Eileen Ordover Ramon Castellblanch Creating Recreation Access Together Thursday Transition from School to Work: Political Activism, Social Change and Strand Coordinator: Linda Heyne Legal Rights in the High Quality Disability Culture on the Internet Michael Reynolds This year we devote the day to access issues (pro- Programs Designed for All Students grammatic and environmental) in recreation TAB'S (Temporarily Able-Bodied) settings. Presentations feature a therapeutic rec- Kathy Boundy, Eileen Ordover in a Gimp World: The Role of reation model, access training, peer mentoring, California's Coffelt Lawsuit-A Partnership in Disability Advocacy use of leisure time by adults, and a model in- Personal Perspective Jill Jacobs, Greg Smith clusive recreation program. Bill Coffelt ALSO LOOK FOR WORKSHOPS ON: The Reauthorization of Rehabilitation Act Criminal Justice and Persons with Medicaid, SSI/SSDI, Managed IDEA Implementation and Enforcement Q & A Disabilities as Victims of the System Care Knowing Your Abilities Issues for the 106th Congress Thursday- Saturday and Your Policymakers impacting the Legislative Process Strand Coordinator: Barbara Ransom Jesse Wechsler Impacting the Election Process The Future of M1CASA This strand will not only provide information ADA Update about persons with disabilities as victims, but From Assisted Suicide to Equal Much more... also will offer a variety of training sessions to Protection help persons with disabilities, their families and Dick Sobsey *Specific dates and times of these sessions will advocates to learn to stop the violence. Educa- be available at a later date. tors, providers, police officers, and persons with disabilities and advocates will explore Issues of nal justice system on persons with disabilities who Employment and Transition Strand hate crimes, sexual abuse and the victimization Are suspected and/or accused of a crime. The Thursday-Saturday of children with disables. strand will offer panel presentations which will Strand Coordinator: Mike Callahan provide for a healthy interchange between the This strand will highlight over 30 sessions cov- Criminal Justice and Persons with presenters and an opportunity for the participants ering hot issues in the employment and transi- Disabilities Accused of A Crime to add theirexperiences, thoughts and ideas. tion of people with significant disabilities. Top- Thursday-Saturday Participants will benefit from sessions regarding ics will include natural supports, choice, con- Strand Coordinator: Barbara Ransom accommodations such as alternative sentencing version, individualized planning and much, This strand will discuss the impact of the crimi- programs and individual justice programs. much more! Continued on page 11 BEST COP if AVALABLE PAGE 10 .2.0.8 TASHNewsletter, August 1998 IN-FOCUS STRANDS
Continued from page 10 Building and Maintaining for inclusion of students with spe- transdiciplinary team members a Skilled Paraeducator cial health care needs. Methods of who are involved in this issue will Governmental Affairs, Workforce assuring the safe provision of be included. Public Policy, and Thursday health care services and appropri- Grassroots Organizing Strand Coordinator: Anna LOU Pickett ate educational programs will be Urban Strand Strand This strand addresses administra- highlighted. Friday tive and career development issues Thursday-Saturday Strand Coordinator: Nancy Zollers that influence the recruitment, re- Strand Coordinator: Marcie Roth Spirituality This strand includes dialogue and Join us throughout the conference tention and performance of Thursday and Friday presentations with researchers and paraeducators. Topics addressed as we focus on the critical govern- Strand Coordinator: Alan Berger practitioners who are working with include guidelines for paraeducator mental, publicpolicyand Many pdople of faith, from every Urban practitioners to improve role definition, supervisory skills grassroots organizing issues affect- religious persuasion examine the schools and communities for stu- required by teachers, and research ing people with disabilities and issues of spirituality and disability. dents with and without disabilities. findings on effective paraeducator their advocates. See page 10 for Inclusive religious communities This year along with Lou Brown, interaction with children and youth. more complete description. have been forming to welcome Alison Ford, Gwen Benson, Kathy people with disabilities in all as- Chapman, Nancy Zollers and Mary High School Inclusion: Higher Education and pects of religious life.This is the Personnel Preparation Ann Fitzgerald are Elizabeth Making It Work for Everyone first time this issue has been for- Fitzgerald, David Riley, Diane Thursday and Friday Thursday mally explored at the TASH Con- Ferguson, Phil Ferguson and Trish Strand Coordinator: Diane Ryndah Strand Coordinators: Carol Tashie, ference. Join us for thought pro- Boland, from the National Institute This strand includes sessions related Mary Schuh, Jeff Strully, Doug Fisher voking sessions. for Urban School Improvement. and Cheryl Jo rge ns en to restructuring preservice person- nel preparation, cross-discipline It is 1998 and still far too many high Students Who Severely Young Children and Families: school students with disabilities preparation efforts, and university- Challenge Schools New Views on Education and spend their days in segregated class- school partnerships to facilitate Thursday Building Community rooms, life skills programs, and change and/or preservice instruction. Strand Coordinators: Linda ThursdaySaturday separate community-based instruc- Rammler and Debbie Gilmer Strand Coordinators: Beth Brennan, tion. This all day interactive, free- Positive Approaches to This strand will focus on hot topics Behavior Support Elizabeth Irwin, Leslie Soodak flowing, and provocative strand is related to children who challenge A spectrum of issues specific to Thursday designed for people interested in the school system and require ad- young children with significant spe- Strand Coordinators: Rick Amado, making high school inclusion a re- ditional supports in the areas of cial needs will be examined through- ality for all students. Share new in- Tim Knoster and Fredda Brown family support, inclusive education, This strand will feature sessions out this strand. Information regand- formation, gain innovative strate- and positive approaches. A variety ing legislation, practice and research that discuss innovative practices in gies, and problem solve common of sessions from students, parents, in early childhood will be shared. obstacles to achieving fully inclu- the development and implementa- sive high schools. Join the strand tion of positive supports in inclu- coordinators and many others to sive settings. learn, challenge, debate, and work Sexuality Issues together to make high school inclu- Students FIRST: sion a reality for all students. Thursday-Saturday Strand Coordinator: Ann Heler Parents as Partners Models of Distance Educa- Sexuality and sexual expression are in the Special Education tion: Delivery of University- a natural part of each of our lives. Level Course-workin These sensitive and critical issues Process Significant Disabilties require awareness, respect and com- Thursday mitment to ensure all people have A Training Module for Proactively the ability and the information to Strand Coordinator: Fred Spooner Building Knowledge, Understanding As part of this strand, models of Dis- act upon their choices and interests. tance Education (e.g. two -way in- This strand will highlight those ses- and Trust to Develop a Strong teractive TV, satellite enhanced CU- sions that address this critical topic. Family-School Partnership SEE-ME, and web based instruction) will be defined, described, and dis- Self-Determination Topics include: cussed for the delivery of university- Thursday Special Education Terminology and Process level coursework in significant dis- Strand Coordinator: Tom Nerney IEP Data Collection and Reporting abilities for within state and across Self-determination is one of the state and regional dissemination. hottest topics sweeping the nation. Continuum of Special Education Services This strand will feature sessions Transition and Future Planning Multicultural that help to define self-determina- Procedural Safeguards Thursday and Friday tion, what it is and what it is not. Communication Strategies Strand Coordinator: Lynda Presenters include leaders in the Baumgardner self-determination initiative from er)). As the world grows smaller we acros the country and Canada. 62.Corv5uLriNG(0)° must learn from each other the best P.O. Box 6049-747 practice in community living. Al- Special Health Care Needs Katy, TX 77491-6049 ways realizing that there can be Friday (281) 395-4978 Fax (713) 973-1271 "unity in diversity".This strand Strand Coordinator: Donna Lehr features sessions focused on Sessions included in this strand httpllwww.lrconsulting.com multicultural/international issues. will focus on practices necessary
BEST co0 PAGgn9 TASH Newsletter, August 1998 TASH CONFERENCE
7 T H ANNUAL Institute for Inclusive Education October 25-27, 1998 St. Louis, Missouri
featuring Frank Bowe °Alan GartnerHoward Knoff Robi KronbergDorothy LipskySandra Rief Richard VillaGwen Webb-Johnson & over 40 "how to" breakout sessions
PraCtical str6teifrifbrclassroom teOCherslind Special seminar for school leaders , Discounted rates available before October 1,1998 ,Odministrators to supportv today'S, diyerse/ i ,)1-.. 4. ' . stiglents.Topics include: multicultUrol issu9g, Call: l 800 * 478 * 5684 ender equity, at-risk.atternatiye'education, irklusion, gifted,A013;:BDLA#aling with 't i -.,..) violelke-and More COOPERATING SCHOOL DISTRICTS
Two new resources to fully include students in general education classrooms from PEAK Parent Center
elemerttattl Offers erigagirtel Provides. teacttersactilAt:leslAila teachers classroomto for str illoclifyirlg dIcyle&es' slor istandards-based acceytarce,A744alt-toTteS learhing friertaktysolaaAs. activities arta tIveis ing allof -ore Inc/udes Ask for a copy of 19tudeats,ejcaMus'Ples' for PEAK's new catalog I valletY
To order send payment to: PEAK Parent Center, 6055 Lehman Dr., #101, Colorado Springs, CO 80918(719) 531-9400-24-8 $2 per book shipping & handling PAGE 12 TASH Newsletter, August 1998 THURSDAY SESSIONS
Thursday, Visions for Independent Living Contextual Assessment: through Computerized Evaluating Students in Inclusive December 3, 1998 Prompting System Educational Settings Interest Area: Self-Determination Interest Area: Inclusive Education 8:00 -9:00 AM Speakers: Nancy Baesman, Bill Baesman Speaker: Harvey Mar It's Our Turn: Students with Disabilities are Welcomed at Assisting People with DD Who IQ Will Never Be The Same Again Trinity College are Victims of Crime Interest Area: Communication Interest Area: Higher Education/Personnel Interest Area: Criminal Justice Strand Speakers: Anne Donnellan, Jami Davis, Sally Young Preparation Strand Speaker: James McAfee Speaker: Mary Beth Doyle Learning to Change: Lessons from Work-Wage Relationship and our Inclusive Learning Communities Factors That Impact on Inclusion Individuals with Disabilities Interest Area: Inclusive Education/Research of Supported Employees at Work Interest Area: Employment Strand Speakers: Elizabeth Kozleski, Sue Chandler,Robin Interest Area: Employment Strand Speaker: Lou Brown Brewer, Beth Schaffner, Janet Filbin, Janell Sueltz Speakers: Nanho S. Vander Hart, Susan M. Hamre-Nietupski Spirituality Crackerbarrel Sea Monitoring for IDEA Compli- Interest Area: Spirituality Strand ance: Devising a System that Works A Foot in Both Camps: Parents Facilitator: Alan Berger Interest Area: Inclusive Education Who Are Also Professionals Speakers: Kay Lambert, Jim Comstock-Galagan Interest Area: Family Self-Determination: What It Is/ Speakers: Deanna Horstmeier, Ann Turnbull, Bud What It Is Not Incorporating Services for Fredericks, Thomas Powell Interest Area: Self-Determination Strand Seniors and Their Caregivers Speaker: Tom Nerney into an Existing Agency Practical Applications for Interest Area: Aging Strand Promoting Social Integration in Transitioning to a University Speakers: Mary E. Davis, Debbie Gibson-Jaworski, the Workplace Campus Margaret Bean , Sharon Tarzia, Laurie James Interest Area: Employment Strand Interest Area: Transition Strand Speakers: Teresa A. Grossi, Keith Storey Speakers: Randi Agetstein, Terri Crawford, Strategies for Developing Policies Sheree Witt, Steve Shumaker & Infrastructures for Improving Providing General Curriculum Paraeducator Performance Adaptations Support through A Advocacy-in-Action: Building Strong Interest Area: Paraprofessional Strand Side-by-Side Model Effective Self-Advocacy Coalitions Speaker: Anna Lou Pickett Interest Area: Inclusive Education Interest Area: Advocacy Speakers: Susan Bashinski Nettie, Collins-Hart, Speakers: Rebecca S. Salon, Ricardo Thornton You Know Why, Let's Talk How! Doug Eicher Changing Services to Help Due Process Rights for Persons People Get What They Want. with Cognitive and Family Sensitive Services: Interest Area: Community Living Strand Multicultural Perspectives Communication Disabilities Speakers:James Meehan, Sally Sweeney, Gail Fanjoy Interest Area: Multicultural/International Strand Interest Area: Criminal Justice Strand Speakers: Yea-Shwu Alice Kang, Kathryn Haring, Speakers: Dohn Hoyle, Marsha Katz Building Coalitions Will Make a Jan Watts, David Lovett Difference Alternatives for Community-Based Interest Area: Advocacy Transition from Preschool to Instruction: Responding to Priorities Speakers: Linda Anthony, Bob Liston Elementary School Interest Area: Inclusive Education Interest Area: Early Childhood Strand Speaker: Diane Browder A Comparison of Distance Education Speakers: Susan Gregory, Joan Watts Models & Technologies for Severe Flying By The Seat of Your Pants: Therapeutic Recreation: Disabilities Personnel Prep More Absurdities and Realities of Interest Area: Distance Education Strand A Person-Centered Approach Special Education Speakers: Fred Spooner, Barbara L Ludlow, Belva /nterest Area: Leisure and Recreation Strand Interest Area: Inclusive Education C Collins, Martin Agran, Richard Kiefer-O'Donnell, Speakers: Bob Cipriano, Cynthia Driscoll Speaker: Michael Giangreco The Importance of the Arts for Thursday, Thursday, Children & Adults with Disabilities December 3, 1998 Interest Area: Creative/Performing Arts December 3, 1998 Speaker: Richard Russey 9:15-10:15 AM 8:00 -10:15 AM Facilitative Support for Members of Considering Holistic Mental Supporting People in Exercising Health Options Boards of Directors and Committees Their Rights to Grieve Interest Area: Related Services Interest Area: Special Health Care Needs Interest Area: Ethics/Rights Speaker: Dana Henning Speakers: Bob Little, Sherry Beamer, Thomas Speaker: Karen Hightower Hopkins, Charlene M. Jones, Nicole Lutz 211 Continued on page 14 PAGE 13 TASH Newsletter, August 1998 THURSDAY SESSIONS
9:15-10:15 AM Continued from page 13 Service, Spirituality & A Single Mom, Twins with Autism, Leadership: Sustaining Our Work and Positive Behavioral Support Self-Determination: Translating Through Power Within Interest Area: Positive Approaches Strand Concepts into Support Interest Area:Spirituality Strand Speakers: Teresa MacGregor, Shannon Kelly Interest Area: Self-determination Speaker: Susannah Joyce Keough, Brenda Fawcett Speakers: Linda Bambara, Christine Cole, Freya Koger Learning to Work with Law The DD Offenders Program: An Alternative Sentencing Program Building a Self-Advocacy Enforcement Interest Area: Criminal Justice Strand Interest Area: Criminal Justice Strand Training Team Speakers: Dianne Wolfe, Dolores Norley Speaker: Suzanne Lustig Interest Area: Ethics/Rights Speakers: David Lord, Connie Rutherford, Who's Listening Anyway? Bunnie Strand, Diana Robishaw, Cherie Tessier, Thursday, Dale Cohn, Cha Pope, Michael Raymond Parents' Perspectives on Being Heard in Inclusive Classrooms December 3, 1998 Restructuring a Personnel Interest Area: Early Childhood Strand Speakers: Leslie C. Soodak, Elizabeth Erwin 9:15 -10:45 AM Preparation Program: Key Steps Research, Reality, and the and Lessons Learned Access Recreation: Creating Increasing Challenge in Aging Interest Area: Personnel Preparation/Higher and Advocacy Education Strand Access to Community Recreation Interest Area: Advocacy Speakers: William R. Sharpton,Jimmie L Matthews Opportunities for All Kids! Interest Area: Leisure and Recreation Strand Speakers: Liz Lindley, William Dussault,Jay Umoto Constructing Support Plans for Speaker: Cynthia Burkhour Students Who Have Escalating Thursday, Behavior Patterns Whole Schooling: Connecting December 3, 1998 Interest Area: Students Who Severely Challenge Inclusion to Reform in Urban & Schools Strand Rural Schools 9:15 -11:30 AM Interest Area: Inclusive Education Speaker: Lewis Jackson, Becky McClure, Facilitated Communication: Theory, Michelle Padilla, Jennifer Barnes Speakers Kim Beloin, Alan Arnold, Dominick Ferrito, J. Michael Peterson, Aremetta Rodgers, Technique, Practice and Community Yvonne Mayfield Interest Area: Communication Speakers: Genevieve Ameling, Brad Jones, Don Shouse, Scott Newman St. John's Community Services and Strategies to Plan a Successful Fu- ture For a Person Changing Homes irerty ary1andt's CRP/RRCEP Interest Area: Community Living / IViresen Speakers: Daniel Baker, Rob Horner, toving to Coinm nity Based William Ard, Gary Sappington Inclusion in Scandinavia, Services:/ Vietnam and the U.S.: Commonalties & Differences Solving th(P- Interest Area: Multicultural/International Strand Speakers: Richard A. Villa, Lee Van Tac, Trai9ing-Co'nfererit Jacqueline Thousand, Edvard Befring 'Septeniber 24 & 25, 1 Brothers and Sisters of People Washington, DC with Significant Disabilities: Keynote Spe trategiekfor: Concerns and Opportunities Cary Griffin/ Adult D y Services ', Interest Area: Family Speaker: Donald J. Meyer University of Montana Employnient Psyci),ifttic_ Rihabilitation Crackerbarrel on Employment CommunitY Livg and Transition Interest Area: Employment and Transition Strand Edticatio Speakers: Lou Brown, Patricia Rogan, Early InterventiOn Michael Callahan , For Registration Information: 202-339-6085,phone BEST COPYAVAILABLE 202-298-8065-tal--, cwesley @sjcs.org 21-2 Continued on page 15 PAGE 14 TASH Newsletter, August 1998 THURSDAY SESSIONS
9:15-11:30 AM Continued from page 14 Fostering Grassroots Change Rings of Safety: Preventing Through Training in Eastern Sexual Victimization of People w/ "Self-Determination: Who's in North Carolina Developmental Disabilities Charge Anyway?" Interest Area: Distance Education Strand Interest Area: Sexuality Strand Interest Area: Se1f-Determination Strand Speaker: Melissa Darrow Engleman Speaher: David Hingsburger Speaker: Sue Henshaw Personnel Preparation: Hilarity Therapy Thursday, Perspectives of Early Interest Area: Personnel Preparation Intervention Practitioners Speaker: John Irvin December 3, 1998 Interest Area: Early Childhood Strand Speaker: Valerie Lava Principals' Project: Administrators 10:30-11:30 AM Using Action Research to Promote Social Cognition and Friendship Law Enforcement Training on Inclusive Practices Development Developmental Disabilities Interest Area: Inclusive Education/Research Interest Area: Inclusive Education Interest Area: Criminal Justice Strand Speakers: Christine Salisbury, Ronald Korenich, Speakers: Steven R. Lyon, Becky Knickelbein Speaker: Forrest Fulton Judy Forrester; Helen Espling, Gail M. McGregor; Lucille Zeph, Elizabeth Kozleski Knowing Sharon Supporting Older Parents of Interest Area: Positive Approaches Strand Adults with Developmental Our Parents Didn't Listen, Will You? Speakers: Gail Mueller, Laurie Kimball Disabilities Interest Area: Governmental Affairs Speakers: Anne Guthrie, Victoria Liska, Jack Interest Area: Aging Strand/Research Setting The Research Agenda... Speakers: Alan Factor Gorelick, Linda Peyton, Sharon Johnson Together Interest Area: Research Inclusion in Faith Communities of Thursday, Speakers: Kathleen Biersdorff, Shelley Trigg, People with Developmental Ryan Geake, Patricia Okahasi, Nilima Sonpal- December 3, 1998 Valias, Janet Pringle, Denise Young Disabilities Interest Area: Spirituality Strand 11:45 -12:45 PM Speakers: Mair Hall Staying Safe in Your Community Preparing Teachers in Significant Interest Area: Ethics/Rights Speakers: David Lord, Michael Raymond, Connie Climbing Our Mountains Together Disabilities: Literature Content Rutherford, Cherie Tessier, Diana Robishaw, Interest Area: Self-Determination vs. National Survey Cha Pope, Dale Colin, Bunnie Strand Speakers: Betty Jane Bertrand, Denise Winslow Interest Area: Personnel Preparation/Higher Education Strand/ Research With a Little Help from My Friends Defendants with Mental Speakers: Denise Clark, Diane Ryndak Interest Area: Leisure and Recreation Strand Retardation: Dilemma for Speakers: Teri Hough, Tracey Day Criminal Justice Personnel Victim Assistance to Crime Interest Area: Criminal Justice Strand Victims with Disabilities Service Learning for Students Speaker: Dolores Norley Interest Area: Criminal Justice Strand with Severe Disabilities Speaker: Debbie O'Neil Interest Area: Inclusive Education Thursday, Speakers: Martha Burns, Nicholas J. Certo, Characteristics of Outstanding Keith Storey December 3, 1998 Paraeducators Working with Students w/Significant Disabilities Teaching the Inclusive Teacher: 10:30 -12:45 PM Interest Area: Paraprofessional Strand Restructuring the Mainstreaming Community Building - Seattle Style Speaker: Deborah Peters Goessling Course Interest Area: Community Living Strand Interest Area: Personnel Preparation/Higher Speakers: Carolyn Carlson, Archie Barrett, Larry What Are They Doing Now? Education Strand/ Research Moss, Dick Wagner, Melanie Richardson, Susan Exploring "Leisure Time" of Adults Speakers: Kim Beloin, Mike Peterson Harmon, Rachel Kirby, Kathy Whittaker, Matt with Significant Disabilities Whittaher, Thomas Whittamore Interest Area: Leisure and Recreation Strand Looking Back at the School Speakers: Margaret Hutchins, Adelle Renzaglia Experiences of Youth in Prison Teaming for Inclusive Education Interest Area: Strand on Students Who Challenge Reform First Step in Educational Reform: Schools/Research Interest Area: Inclusive Education Reconceptualizing Discipline Speakers: Sharon Lynch, Philip Swicegood, Edwin Speakers: Karen Zimbrich, Debra Hart Interest Area: Strand on Students Who Severely Davis, Debra Price Challenge Schools Moving Special Education Speaker: Gigi DeVault Teaching Assistants' Talking, Systems Forward to Support Learning and Creating Change Inclusive Practices Inclusion: It's a Right and It Works! Interest Area: Paraprofessional Strand Interest Area: Inclusive Education Interest Area: Inclusive Education Speakers: Mary Fisher, Dawn Birchenough, Speakers: Beth Schaffner, Barbara McKenzie Speakers: Pam Gilroy, Lynn Stonestreet, Kristen Mathewson Sue Williams 213 Continued on page 16 PAGE 15 TASH Newsletter, August 1998 THURSDAY SESSIONS
Public Sector Careers in Seattle, King County and Washington State - EXECUTIVE DIRECTOR - Interest Area: Employment Strand Speakers: Candace T O'Neill, Heather Weldon, Community Systems (CSI) is an agency dedicated toour mission of Rhonda Bell, Ray Jensen "helping people with disabilities find happiness in their homes,communities and lives." Working Together: Decision CSI seeks a hands-on professional with a proven track record of Making Processes for All IFSP success Team Members in providing state-of-the- art, high-quality supports topersons with develop- Interest Area: Early Childhood Strand mental disabilities. The Executive Director is responsible for leadinga multi- Speahers: Jacqui Vanhorn, Leau Phillips disciplinary team of professionals, providing clinical guidance and financial management. Supporting Families Today in Their REQUIREMENTS INCLUDE: Advanced degree plus 10years related Communities: The New Family experience. Knowledge of self-determination, budget management, anduse of Support Program in Washington a personal computer. Please send vitae/resume and letter of interest to: Interest Area: Family Executive Search Speakers: Susie Schaefer, Adina Angle, Allison 295 Alvord Park Road Middleton, Steve Elliott, Elaine Shab-Bragg Torrington, CT 06790 Thursday, CSI is an AA, EOE employer supporting workplace diversity. December 3, 1998 11:45 -2:00 PM 11:45 AM - 12:45 PM Continued from page 15 Creating Postsecondary Options: Doing Research in the Time of Issues & Strategies from the Field Disability Rights As Families Would Have It: Interest Area: Transition Strand Interest Area: Research Effective Family Support Policy Speakers: Marcia C. Arceneaux, William R. Sharpton Speakers: Douglas Biklen, Ellen Brantlinger, Interest Area: Family Christopher Kliewer, Susan Rubin Speaker: Susan Yuan Faith and Individuals with Disabilities: Inclusive Church Thursday, Connecting University Students Congregations with Families through Supportive, Interest Area: Spirituality Strand December 3, 1998 Meaningful Internet Activity Speaher: Kimberly Farrington Interest Area: Distance Education Strand 1:00-2:00 PM Speakers: Emily Watts, Ching-Jung Lin Moving Beyond Awareness: Training Person-Centered Teaching Disability Culture and Planning Facilitators: Teachers' Conceptions of Civil Rights Challenges of a Paradigm Shift Inclusive Education in the Interest Area: Self-Determination Interest Area: Community Living Strand Malaysian Educational System Speaker: Jill Crawford Speakers: Angela Novak Amado, Marijo McBride Interest Area: Multicultural/International Strand /Research Enhancing Services for Fathers of Jimmy Tanahashi's Gift: Working Speaker: Winny Bosi Children with Disabilities for Dharma in the West Interest Area: Family Interest Area: Spirituality Strand The ADA and Reasonable Speakers: James May, Paul Blair, Robert Poretz- Speaker: Bonnie Shoultz Accommodations for Persons w/ Rosoles, Ray Gonzales Disabilities in the Criminal Using Disability Humor to Promote Justice System Cooperative Learning and Inclusion: Awareness & Inclusive Practices Interest Area: Criminal Justice Strand Making It Work for All Students Interest Area: Inclusive Education Speaker: Frank Laski Interest Area: Inclusive Education Speakers: Robin Smith, Mara Sapon-Shevin Speaker: Mara Sapon-Shevin Through the Eyes of Team Members: Stories from Families of Children The Meaning of Positive Approaches Reclaiming Our Lives: Self- w/ Significant Disabilities & Interest Area: Positive Approaches Strand Directed Support Brokerage Challenging Behavior Speakers: Linda Bambara, Freya Koger, Interest Area: Self-Determination Strand Interest Area: Positive Approaches Strand Ophelia Gomez Speakers: Laurie Powers, Randal Fulgham, Rosella Speakers: Bobbie J. Vaughn, Lise Fox, Glen Dunlap Samuelson, Diann Drummund, Jan Staehely Multiple Pathways to Meet the Understanding the Process of Needs of Students in Urban Plan Wars: Resolving Tensions in Change: Catalysts and Leadership School Districts Person Centered-Directed in Program Conversion Interest Area: Urban Issues Planning for Employment Interest Area: Employment Strand Speakers: Jennifer" Coots, Marquita Grenot- Interest Area: Employment Strand Speakers: John Butterworth, Patricia Rogan Scheyer, Mary Falvey, Kathryn Bishop-Smith Speaker: Norciva Geddie Shumpert 214 Continued on page 17 liEST COPY AVARAULE PAGE 16 TASHNewsletter,August 1998 THURSDAY SESSIONS
1:00-2:00 PM Continued from page 16 Thursday, Effectively Managing Support Staff Helping or Hovering: Interest Area: Management Issues Paraeducators in Inclusive December 3, 1998 Speaker: Denise Mautz Classrooms 1:00-3:15 PM Sex and the Single Self-Advocate interest Area: Paraprofessional Strand Interest Area: Sexuality Strand Speaker: Mary Fitzgerald Innovative Partnerships for Inclu- sion: Parents-University-School Speakers: Michael J. Owens, Sheila Scott, Martha Kline, Deborah Robinson, Dan Kline, Lou Ann Interest Area: Personnel Preparation/Higher Resources for People with Ross, Lynn Balochilo, Jo Ann Myer, Steve Dorsey Disabilities Who are Sexually Education Strand Abused Speakers: Kathleen Campbell, Diana Walsh Thursday, Interest Area: Criminal Justice Strand Community Building & Circles of Speaker: Leigh Ann Reynolds Support December 3, 1998 Reflections on Support "Systems" Interest Area: Family 2:15 PM 3:15 PM Speakers: Lindy Stormberg-O'Keeffe, Interest Area: Students Who Severely Challenge Michele Lehosky, Betty Johnston, Roberta Reesman Functional & Inclusive Curriculum Schools Strand Getting the Balance Right Speakers: Linda Rammler, Deborah A. Gilmer, Interest Area: Inclusive Education Cathy Apfel Early Intervention Opportunities and Challenges Speakers: Donna Lehr, Patricia K McDaid, Working the Media: A Interest Area: Early Childhood Strand Regis C. Miller Speahers : Kathy Sykes, Michael Moore, Eileen Keenan Grassroots Strategy The State of Family Support in Interest Area: Communication Speakers: Jennifer Burnett, Marsha Katz, Perspectives of Family Members Washington Steve Verriden and Students Supported by Interest Area: Research Medical Technology on Transition Speakers: Paul Froese, Lyle T Romer, Transition to Community Life in Interest Area: Transition Strand Matthew Swank Distressed Neighborhoods: A Speakers: H. Rutherford Turnbull, Amanda Reichard, Gardner Umbarge, Mary Morningstar Involving Family Members and School/Agency Partnership Individuals with Disabilities in Interest Area: Transition Strand Speakers: Fredda Rosen, Geoffrey Lloyd, Is it Either/Or? Nol "Systematic" Preservice Programs Emily B. Ellis and "Inclusive" Go Together Interest Area: Distance Education Strand Interest Area: Inclusive Education Speakers: Barbara L Ludlow, Michael Duff, "Don't Forget the Fun Speakers: Kathleen Gee, Lori Goetz, Steven Pavlovic, Sara Brannan Jachi L Anderson, Barbara Thompson Developing Inclusive Recreation Positive Behavioral Support for in YoUr Coummunity" Resourcefulness, Resiliency and Students Who Challenge Schools But Interest Area: Leisure and Recreation Strand Speahers: Maria Paiewonsky, Susan M. Tufts Resources: Tools for Inclusion in Do Not Have Significant Disabilities Aotearoa/New Zealand Interest Area: Students Who Severely Challenge Challenges and Strategies for Interest Area: Multicultural/International Strand Schools Strand Preparing Personnel to Work in Speakers: Luanna Meyer, Alison Kearne, Roseanna Speakers: Sharon Lohrtnann-O'Rourhe, Tim P Knoster Bourhe, Jill Bevan-Brown, Janis Carroll-Lind, Lari Rural Settings Durnil-Moazami, Masoud Moazami Fremont Time - Community Interest Area: Distance Education Strand Building through Skills Exchange Speakers: Phil Wilson, Emily Watts, Harold L Microsoft Active Accessibility Interest Area: Community Living Strand Kleinert, James A. Knoll, Jennifer Grisham-Brown Interest Area: Technology Speakers: Melanie Richardson, Deanne Hunt, Reach for IT Speakers: Marina Rosen, Gary Moulton Bitten Fester, Don Cavenaugh, Martha Hinojose Interest Area: Self-Determination Planning with Senior Families & Leadership for Inclusive & Speaker: Dick Hosty Their Adult Children with Disabilities Continuous School Improvement Interest Area: Aging Strand Achieving Citizenship for All- The Interest Area: Inclusive Education Speakers: Nancy Meltzer, Delia Cano, Alan Factor, Speakers: Janell Sueltz, Christi Smith, Role of Individualized Funding Lupita Cano, Sally Sehmsdorf, Nadean Robert, Dan Vallez, Alison Boggs Interest Area: Self-Determination Strand David Bass Speakers: Brian Salisbury, Christine Gordon Positive Behavioral Support w/Fam- Provider Issues Relating to Hies of Diverse Cultural Back- Curricular Adaptations for Students Consumer Choice with Significant Challenges During grounds, Issues & Considerations Interest Area: Employment Strand Interest Area: Positive Approaches Strand Difficult Periods Speahers: Michael Callahan, Abby Cooper Speakers: Bobbie J. Vaughn, Glen Dunlap, Interest Area: Inclusive Education Ann Turnbull Speakers: June Downing, Diane Browder MiCASA: The Campaign for REAL Choice Interest Area: Advocacy Speakers: Michael Auberger, Woody Osburn, Linda Anthony, Bob Liston Continued on page 18 BEST COPY AMIABLE PAGE 17 215 TASH Newsletter, August 1998 THURSDAY POSTER SESSIONS
2:15-3:15 PM Continued from page 17 Special Education Monitoring & Compliance Interest Area: Advocacy Thursday Poster Sessions Speaker: Leslie Seid Margolis Inclusive Network of Kansas for Thursday Students with Severe Disabilities: Supervising Paraeductors in A Statewide Field-Based School Settings: A Team Approach Poster Session I Consultant Model Interest Area: Paraprofessional Strand Interest Area: Personnel Preparation/Research Speaker: Kent Gerlach 9:00 -11:00 AM An Example of Individualizing Speakers: Gwen Beegle, Donna Wickham, Susan Bashinski, Joan Houghton, Margy Computer Assisted Instruction Treatment Acceptability of Choice Hornbach, Jami Sweeney Interest Area: Positive Approaches Making Interventions for Adults Speakers John Foshay w/ Developmental Disabilities Thursday Interest Area: Communicaiton The Role of Dispute Resolution in Speakers: Pat Mirenda, Francesca Barth Managed Care Conflicts Poster Session II Interest Area: Ethics/Rights A Retrospective Study of Changes Speakers: Jeanne Durr, Laura Schumacher 1:00-3:00 PM in the Field From 1991-98 Human Rights: Understanding Interest Area: Personnel Preparation/Research Experiences of Community: and Using the Laws Speakers:Joanne Eichinger, Robert Ike; Kelly "It's the day-to-day living that Interest Area: Ethics and Rights Evans, June Downing, Amy Feck matters." Speaker: Patricia Okahasi Interest Area: Research Providers & the Justice System: Speaker: Joanna Royce-Davis Healing Reflections: Acting in Your Client's/Student's A Reason to Change Identity Management Issues Interest Area: Urban Issues Best Interest Persons with DD Who Identify as Speakers: Ann Marie Campbell, Barbara Interest Area: Criminal Justice Strand Lesbian, Gay or Bisexual Prince Speaker: Jane Dalen Interest Area: Sexuality/Sexual Expression Speaker: Scott Thompson The Lifestyle Development Resources for Victims with Disabilities Process: An 8 Year Overview Interest Area: Criminal Justice Strand Florida Outreach Project for Interest Area: Positive Approaches Speaker: Beverly Frantz Individuals w/Deaf-Blindness: Speakers: Tracy Kand-Borg, Ken Brown, A Program Description Bonita Holman, Michael Colins, Selena My VoiceMy Choice Interest Area: Students Who Severely Chong, Christine White, Leslie Jones, Interest Area: Self-Determination Strand Challenge Schools Claudette Sandecki Speakers: John Agosta, Kerri Melda Speakers: Melinda Morrison, John Polefko, Laurie L Triulzi, Donna Gilles The Children's Link Society Interest and Action Meeting for Interest Area: Family What a Good IDEA! The Speakers: Brenda McInnis, Kim Kruger Leisure and Recreation Evolution of a Parent Manual Interest Area: Leisure and Recreation Strand Interest Area: Advocacy Supports for Children with Deaf/ Facilitator: Cynthia Burhhour Speakers: Charlene Comstock-Galagan, Kay Blindness, Their Families, and Lambert, Denise Brady Schools Inclusive Education Systems Interest Area: Students Who Severely Change...Looks Messy, But it's A Comprehensive Service Challenge Schools Really Chaos Delivery Program for A Woman Speakers: David Lovett, Kathryn Haring, Interest Area: Inclusive Education with Deaf/Blindness Jan Watts Speakers: Lucille Zeph, David Noble Stockford, Interest Area: Community Living Mark Fairman Speaker: Sarah Wilson Positive Approaches to Learning: Teaching About Concept Person Centered Job Parents as Care Managers - Development Results and Expansion Interest Area: Communication Development: No More Square Interst Area: Family Speaker: Masoud Moazami Pegs in Round Holes Speakers: Joan Grauman, Deb Hobbs, Interest Area: Employment Strand Sue Dow Catholic School Inclusion Speaker: Paul Selby Initiatives Discovering Connections: Interest Area: Inclusive Education Delaware Alternative Assessment A Guide to the Fun of Bridging Speahers: Patt Jones, Aimee Fellows, Interest Area: Inclusive Education Disability Differences Father Joseph Sileo, Dorothy Thayer Speakers: Martha Toomey, Mary Ann Interest Area: Community Living Mieczkowski, Donald L. Peters Speaker: Linda Hill Will You Work For Me? Self- Determined Hiring Practices Interst Area: Self-Determination Speaker: Nancy Meyers
PAGE 18 216 TASH Newsletter, August 1998 TASH CONFERENCE ...... 1998 TASH Annual Conference..... Take time to experience the Seattle City Tour taste, sights and sounds You will learn why Seattle has been named one of that have made Seattle America's most livable cities! Our friendly and informa- tive tour guide will give historical background on the one of the premier area, point out interesting landmarks, as well as give convention destinations insider tips on special shopping and sightseeing areas. in the country! Check Included in the tour is Freeway Park and the bustling Pike Place Market where Seattleites shop for produce and out one, or both, of art. You'll see historic Pioneer Square which was settled these exciting tour in 1852 and is now home to Seattle's top art galleries; events during your stay. the International District, heart of Seattle's Asian com- munity; and the magnificent gothic-style in Seattle. buildings on the 680-acre University of Washington campus. Next, explore the Hiram Grapes & Hops Tour Chittenden Locks, the passageway Enjoy the scenery of rural Seattle as you travel to the between saltwater and fresh for Columbia Winery and Redhook Brewery. First, you tour 78,000 vessels a year. Inspect the charming Redhook Brewery. Try several complimentary fish ladders where thousands of hearty microbrews, while learning the beer making process salmon travel upstream to spawn. and the history of the Redhook Brewery You'll receive a Visit a local coffee roasting plant Redhook Brewery souvenir glass during the tour. and learn all about coffee roast- Next, tour the spectacular Columbia WineryYou'll ing. Finish your tour at one last discover Columbia Winery's history and how this winery stop Magnolia Bluff neighbor- produces such award-winning wines. After the tour, enjoy hood north of the city for picture-perfect complimentary wine tastinga feast for the senses. views of Elliott Bay and the stunning city skyline. Date: Saturday, December 5th; tour departs at 2:00 PM Date: Sunday, December 6th; tour departs at 9:00 AM Duration: Approximately 5 hours Duration: Approximately 3 hours Cost: $42.00 (includes a box lunch) Cost: $28.00
Tagovette044 Invitation for Submissions About the Series Innovations is a publication of the American Association on Mental Retardation that brings researchto practice. Designed for busy practitioners, Innovations translates research findings into clear, usable ideas. Eachissue is devoted to one topic. Recent issues have included: Teaching Students in Inclusive Settings by MaryAnn Demchak Teaching Self-Management to Elementary Students by King-Sears & Carpenter Designing Positive Behavioral Support Plans by Bambara & Knoster Increasing Variety in Adult Life by Daniel Steere CALL FOR CONTRIBUTORS Submissions of proposals for the 1999 series are invited. Potential contributorsare requested to prepare a 2-3 page proposal including a description of the topic and its importance,an outline of the content and references. If a proposal is accepted, a full manuscript will be invited for review. The deadline for the next round of review is November1, 1998. Mail 15 copies of the proposal to Diane Browder, Editor of Innovations, Department of Counseling, SpecialEducation, and Child Development, University of North Carolina at Charlotte, 9201 University City Boulevard, Charlotte,NC 28223-0001.
PAGE 192 1 TASH Newsletter, August 1998 FRIDAY SESSIONS
Friday, Forum for Canadian University Research in Supported and College Faculty Employment December 4, 1998 Higher Education Interest Area: Employment Strand 8:00 -9:00 AM Facilitator: Pat Mirenda Speakers: David W. Test, Wendy M. Wood Related Services in Inclusive Person Centered Behavioral Connecting Urban Youth: Classrooms: Four Years of Support: The Key to Meaningful Inclusion from the Inside Out Research Change Interest Area: Urban Issues Strand Interest Area: Related Services/Research Interest Area: Positive Approaches Speakers: Kathy Chapman, Rebecca S. Salon, Speakers: Michael Giangreco, Susan Edelman Speakers: Craig Miner, Paul Bates Norris Johnson, Gail Hilliard-Nelson MAPS As A Planning Tool: Community Living Partnership: Statewide Systems Change: What Works? What Doesn't? Working Together Dreams Can Lessons Learned from Multiple Says Who? Come True State Projects Interest Area: Inclusive Education Interest Area: Community Living Strand Interest Area: Inclusive Education Speakers: Meg Grigal, Carol Quirk, Sue Manos Speakers: Bob Herne, Rosalee ladarola Speahers: Christine Salisbury, Gail M. McGregor, William R. Sharpton, Wayne Fox Transition Planning: A Dialogue Specialized Physical Health Care about Teaching Interpersonal Procedures: Survey of Service Sibshops: Getting Started and Socio-Sexual Skills Delivery Interest Area: Family Speaker: Donald J. Meyer Interest Area: Transition Strand Interest Area: Special Health Care Needs Strand Speaker: Josephine Chappell Speaker: Wanda) Blanchett Friday, Employers' Perspectives on Hiring Success in College for a Non- People with Mental Retardation Verbal Autistic Student- What it December 4, 1998 Interest Area: Employment Strand/Research Takes Speakers: Deborah Olson, Andrea Cioffi Interest Area: Higher Education/Personnel 8:00-10:15 AM Preparation Strand Supporting Communication Tech- Make a Connection: A Social Speakers Rita Rubin, Steve Boyer, Karen Kilk, nology Using Students in General Connection Service for People Susan Rubin Education: A Holistic Approach with Disabilities Interest Area: Communication Interest Area: Sexuality Strand Inclusive Middle School Math? Speakers: Catherine Sementelli, Aileen Arai, Speakers: Ryan Geake, Denise Young A Multi-Level Approach Victoria H. Jones, Lynn Haynes, Stephanie Gulla Interest Area: Inclusive Education Advocacy Building in Cultural Speaker: Bobbi Schnorr Leadership Today: Partners in Communities Effective Decision-Making Interest Area: Multicultural/International Strand From Dreams to Reality- Interest Area: Advocacy Speakers: Elaine Schab-Bragg, Shan Shan Chein, My Journey Speahers: Sandra Mak Tia Nelis, Gail Davis, Regina Harris, Loxy Braze lton Interest Area: Community Living Kathleen Biersdorff Speakers: Jean M. Millen, Jill Langevin, Nancy Maryland's Ask Me! Project Boyle, T.J. Hill, Marni Healy Successes & Challenges in Interest Area: Positive Approaches Building Supports for Facilitated Speakers: Mindy Morrell, Carlo Harris, A Database of Inclusion Teaching Communication Luciene Pisa, Gordon Bonham, Joan Rumenap & Learning Resources Interest Area: Communication Interest Area: Inclusive Education Speakers: Harvey Lavoy, Pascal Cravedi-Cheg Hey, What's The Big IDEA? Speakers: Teri Howatt, Dee Dickinson Implementing IDEA's Discipline Unlocking the Waiting List: Requirements Peer and Mentor Support via the Creating Futures For All People Interest Area: Positive Approaches Internet Interest Area: Aging Strand Speahers: Robin Brewer Interest Area: Transition Strand Speakers: Judy Liddell, Bill Sellars, Janet Adams Speaker: Sheryl Burgstahler You Gotta Wanna: The Spirituality, Peacemaking and Philadelphia Inclusion Network Safety and Your Rights Community Building...or the Interest Area: Early Childhood Strand Interest Area: Criminal Justice Strand Purpose of Life Speahers: Suzanne Milroy, Philippa H. Campbell, Speakers: Cherie Tessier, Dale Colin, Connie Interest Area: Spirituality Strand Lisa Schneider, Lillian M. McCuen Rutherford, Diana Robishaw, Michael Raymond Speakers: Craig A. Michaels, Denise L Ferrara The 5 Phases of the Criminal Building Community Circles in Building Sustainable Justice System: From Initial Detroit Communities of Support Interest Area: Urban Issues Appearance Through the Interest Area: Positive Approaches Speakers: George Kwaha-Ntiri, Sharon Murphy, Speakers: Don Shouse, Genevieve Ameling, Brad Correctional System Maude Freeman, J. Michael Peterson Interest Area: Criminal Justice Strand Jones, Scott Newman Speaher: Suzanne Lusti Continued on page 21 T COPYWHALE PAGE 20 21:6 TASH Newsletter, August 1998 FRIDAY SESSIONS
8:00-10:15 AM Continued from page 20 You've got a choice... The Behavior- Communication Link stMelding Module Interest Area: Positive Approaches Speakers: Kim Davis, Susan Dixon for facilitating staff development
Friday, Melding Guide December 4, 1998 for self-development 9:15 -10:15 AM Skill Development Products for Partner Teachers Family Managed Employment: A Look at Voucher Projects in Supervising Paraeducators Who Support Washington Students with Special Needs Interest Area: Employment Strand Processes and Tools to: Speahers: Lyn McIntyre, Cesilee Coulson facilitate negotiation of roles and responsibilities foster initial and on-going communication South Carolina's Change to a promote collaborative problem solving Person-Centered Model for Adult That result in: Supports & Positive Behavior a positive working relationship between partner teacher Supports and instructional paraprofessional Interest Area: Management Issues best possible services and supports for students with Speahers: David Rotholz, Ron Dozier special needs (2CONSULTIN/6 Providing Related Services in P.O. Box 6049-747 Rural and Remote School Districts Katy, TX 77491-6049 Interest Area: Related Services (281) 395-4978Fax (713) 973-1271 Speakers: MaryAnn Demchak, Carl R. Morgan http//wwwirconsulting.com Early Childhood Services: Families' The Role for Self-Advocates in Experiences and Perceptions Friday, Interest Area: Research Ensuring Reasonable Speakers: Kathryn Haring, David Lovett Accommodation in the Criminal December 4, 1998 Justice System Consumer Planning Partnership Interest Area: Criminal Justice Strand 9:15-11:30 AM Project: Choice & Self- Speakers: Liz Obermayer Roundtable Discussion on Determination in the National, State, and Local Policy Rehabilitation System We've Come A Long Way, Or Trends: Downsizing and Closing Have We? Interest Area: Self-Determination of Institutions Interest Area: Special Health Care Needs Strand Speakers: Brigid Flannery, Roz Slovic Invited Facilitators: Franh Laski, William Coffelt Speakers: Angie Hawkins, Josephine Chappell What Really Makes the Difference? Alex's Gift: "A Way to Belong"- Interest Area: Employment Strand Urban Issues Interest Area: Urban Issues Strand Strategies for Inclusion Speakers: Patricia Rogan, Susan Rinne, Michelle Interest Area: Inclusive Education Howard Carie Speakers: Nancy J. Zollers, Arun Ramanathan Speakers: Cheryl Nickels, Rachel Nickels, Tara Longitudinal Investigation of Curricular, Behavioral and Peer Todhunter, Niki Owens, Mark Todhunter Emerging Behavior State Patterns Supports: Success in the Middle Using Transition Principles to Interest Area: Early Childhood Strand/Research School Prepare Doctoral Graduates for Speakers: Doug Guess, Sally I. Roberts Interest Area: Inclusive Education Speakers: Ben Adams, Renee Adams, Employment in Higher Education Calab Adams, Lori Eshilian Interest Area: Higher Education/Personnel The Cultural Audit of School Preparation Strand Services for Maori Children with Meaningful Transition Plans for Speakers: Michael Brady, Fred Spooner, Special Needs Diane Baumgart, Diane Ryndak Interest Area: Multicultural/International Strand Youth with Profound Disabilities Speaker: Jill Bevan-Brown Using Behavior State Assessment Cultural Competency: Addressing Interest Area: Transition Strand the Needs of Non-Heterosexual Technology in Transition Planning: Speakers: Barbara Guy, Donna Suter; Wendy Bills, Tammy Salerno, GaryFritz Adolescents/Young Adults Suggestions for Stakeholders Interest Area: Sexuality Strand Interest Area: Transition Strand Speakers: Wanda J. Blanchett, Bonnie Shoultz Speakers: Colleen Thoma, Mary E Held Continued on page 22 PAGE 21 219 REST COPYAVALABLE TASH Newsletter, August 1998 FRIDAY SESSIONS
9:15-11:30 AM Continued from page 21 Teacher Reflection Groups: Using Newsletters As An Quality Educational Programs Supporting Students with Advocacy Tool for ALL Students Interest Area: Advocacy Challenging Behaviors and Interest Area Inclusive Education/Research Speaker: Linda Hertell Learning in Inclusive Settings Speaker: Margy Hornback Interest Area: Positive Approaches Welcome to a "Dream Catchers" Speakers: Deborah L Hedeen, Barbara Ayres Adult Medication & The Gathering Positive Behavioral Support: Goldilocks Principle: "Getting It Interest Area: Positive Approaches Just Right" in Inclusive Settings Speaker: Jean M. Millen Demonstration of an Interactive Interest Area: Advocacy Trainer's Packet Speakers: Marquita Grenot-Scheyer, Interest Area: Positive Approaches Susan Leonard-Giesen Friday Speakers: Denise Poston, Gigi DeVault December 4, 1998 Success in Employment- What Role The National Supported Does Educational Background Play? 10:00-12:00 PM Employment Evaluation Interest Area: Employment Strand/Research CreatingNon-School Work Interest Area: Employment Strand/Research Speakers: Elizabeth Dolman, Sandra Mak, Speakers: David Mank, Mike Ruef, Becky Banks, Nilima Sonpal-Valias Opportunities for Students with Susan Rinne, Grant Revell, Patricia Rogan Disabilities in Urban High Schools Curriculum & Instruction in General Interest Area: Urban Issues Strand Understanding Violence in the Lives Speakers: Lou Brown, Deloras Freeman, Education: Are These Best Practices? Anne C. Smith, Tracy Knight of People w/DD: Reducing the Risks Interest Area: Inclusive Education Interest Area: Criminal Justice Strand Speaker: Martin Agran Speaker: Richard Sobsey Friday, Advocating Oral Health Change Functional Assessment and for People with Disabilities December 4, 1998 Behavioral Support: An IDEA Interest Area: Special Health Care Needs Strand Whose Time Has Come Speaker: Frank Farrington 10:30-12:45 PM Interest Area: Positive Approaches Empowering Staff to Provide Effec- Speakers: Tim P Knoster, Linda Bambara, School Linked Integrated Services: tive Support in Inclusive Settings Rob O'Neill Evidence of Change at the Local Level Interest Area: Inclusive Education Interest Area: Early Childhood Strand Speakers: Katherine F. Doerin,g,Jean Gonsier-Gerdin Friday, Speaker: Christine Salisbury Facilitated Communication & December 4, 1998 "My Life, My Choices: Self Memoir: Events in the Life of Determination in NJ" Eugene Marcus 10:00 AM-3:00 PM Interest Area: Community Living Strand Interest Area: Communication Tour of Homes Speakers: Kenn Jupp, Patti Scott, Brad Goldman Speakers: David Marcus, Eugene Marcus Interest Area: Community Living Strand Speakers: Diane McCalmon, Forest Wetzel, Open Forum on "Access to Empowerment: Sue Closser, Jan Navarre, Rene Roos, Gil Roos Outdoor Recreation" From Buzzword to Practice Interest Area: Leisure and Recreation Interest Area: Independent Living Friday, Facilitator: Cynthia Burkhour Speakers: Jennifer Burnett, Steve Verriden, (see page 39 for description) Linda Anthony December 4, 1998 MiCASA: The Struggle to Free Strategies for Attaining 10:30-11:30 AM Our People Alertness/Attention in Children Speaking Up for Us Again: Interest Area: Advocacy with Significant Disabilities Rebuilding Maine's Self- Speakers: Michael Auberger, Linda Anthony, Bob Liston Interest Area: Students Who Severely Advocacy Network Challenge the System Speakers: Robin Greenfield, Gail Brown Interest Area: Advocacy Focusing on the Point of Transition Interest Area: Transition Strand Speakers: Laurie Kimball, Louis D. Bergeron Speahers: Nicholas J. Certo, Eve Muller, Friday, Kimberley Smalley, Ian Pumpian, Denise Mautz, Systems Change at the Local Caren Sax Level: Local Government December 4, 1998 Funders Changeover to Italy: A National Commitment 11:45 -12:45 PM Supported Employment Interest Area: Multicultural/International Strand Interest Area: Employment Strand Speaker: Carol Berrigan Partnerships Between Local Speahers:Joyce Dean, Mary L Strehlow,Jane W Boone Public Schools and Teacher "Cool Bodies?" Disability and Preparation Colleges What You Can Do "Girl Culture" in a Scout Troop Interest Area: Higher Education/Personnel Interest Area: Criminal Justice Strand Interest Area: Research Preparation Strand Speaker: Jeri Houchins Speaker: Mary Beth Doyle Speaker: Pen-i Harris Continued on page 23 BEST COPY AVAILABLE PAGE 22 220 TASH Newsletter, August 1998 FRIDAY SESSIONS
11:45 AM 12:45 PM Continued from page 22 Developing an Individualized Fetal Alcohol Syndrome: In Restructuring and Professional Employer-Tested Approach to Trouble With The Law Practices That Foster Inclusive, Job Development Interest Area: Advocacy Standards-based Schools Interest Area: Employment Strand Speakers: Ann Streissguth, Barbara Wybrecht Speaker: Melinda Mast Interest Area: Inclusive Education/Research Speakers: Janet Filbin, Linda Montoya, Mary Friday, Rose Keyes, John McKinney Creating Integrated Daytime Opportunities December 4, 1998 Health Matters: Health Issues Interest Area: Employment Strand and Women with Disabilities Speakers: Pam Walker, Bonnie Shoultz 11:45-3:15 PM Interest Area: Special Health Care Health Strand Communities of Tomorrow: A Speakers: Loraine Luterbach, Nilima Sonpal- Bilingual Inclusion: Linking Think Tank on Community Living Valias, Janet Pringle, Denise Young School Reform Efforts to Benefit Interest Area: Community Living All Students Speakers:Jay Klein, Judith Snow, Joe Wykowsiti, Integration in Employment and Interest Area: Research Patti Scott, Lynda Baumgardner, Vicki Cammack Transition: Current Research & Speakers: Pam Hunt, Kevin Wooldridge, Maria and a cast of many others Future Needs Rosa Keys, Anne Hirose-Hatae, Sharon Strachan, Mallorie Baron, Pearl Wong, Procesa Gorrostieta Interest Area: Employment Strand/ Research Friday, Speakers: Keith Storey, Janis Chadsey, Nicholas J. Certo, Denise Mautz, Carolyn Hughes Comprehensive Transition December 4, 1998 Supports: Work, College, and Making Connections Through "Spring Break" 12:05-2:00 PM Mentoring Interest Area: Transition Strand Working to Scale in Urban Schools Interest Area: Inclusive Education Speakers: Diane Browder, Tim Minarovic, Interest Area: Urban Issues Strand Speakers: Nora O'Farrell, Lori Goetz Caroline Dipipi, Edward Grasso Speaker: Elizabeth Kozleski Roundtable Discussion for Advo- Children in Inclusive Settings: Who cates Who Then Become Parents Do They Play With At Recess? Friday, Interest Area: Advocacy Interest Area: Inclusive Education/Research Speaker: Susann A. Terry-Gage December 4, 1998 Speaker: Leslie Seid Margolis 1:00-2:00 PM The Evolution of Parent Advocacy A Handbook on LRE Legal Rights Stop Settling for Mediocrity Interest Area: Inclusive Education in Washington State Interest Area: Advocacy Interest Area: Advocacy Speakers: Patricia Cox Waldman, Beth Wanger Speaker: Jeffrey L Strully Speakers: Janet Adams, Carrie Masten, Sandy J. Utilizing Arts Activities to Teach Silveria, Margaret-Lee Thompson "Whoever You Are": Using Disability Awareness Children's Literature in Interest Area: Inclusive Education From Building a Behavioral Speaker: Heather Downey Disorder Classroom to Building Successful Inclusive Communities District Capacity Interest Area: Inclusive Education Speakers: Mary Fitzgerald, Anne Wilson Inclusive Education in Malta: Interest Area: Positive Approaches Ingredients & Training of Personnel Speakers: Deborah Simak, Paul Malette .Building Alliances: The Network Interest Area: Multicultural/International Strand Series for Community Team Speakers: Elena Tanti-Burlow, Billie Nightingale, Friday, Ruth Falzon Development December 4, 1998 Interest Area: Community Living Children and Youth with Speaker: Joyce Dean Disabilities as Victims of Crime 11:45 AM- 2:00 PM Preparing Pre-service Teachers Interest Area: Criminal Justice Strand Sexuality: Issues & Challenges Speaker: Patricia Sullivan for Inclusive Teaching Facing People with Disabilities Interest Area: Personnel Preparation/Higher Interest Area: Sexuality Strand Education Strand Self-Determination: Key to Speakers: Kathyrn O'Connell, Kate Corcoran Smooth Transition from School to Speaker: Linda Davern Community Employment Victories & Challenges in Music for All: Strategies for Including Interest Area: Transition Strand Developing Housing for People Speaker: Linda McDowell Everyone in the Joys of Music Making with Disabilities Interest Area: Creative/Performing Arts Interest Area: Community Living Strand Speakers: Mara Sapon-Shevin, Mayer Shevin Customizing Community Speaker: Lynn Davison Supports to Maximize Individual Critical Challenges to Self- and Family Control Early Childhood Crackerbarrel Determination Interest Area: Community Living Interest Area: Early Childhood Strand Interest Area: Self-Determination Speakers: Mark Mills, Judi Roun Facilitators: Beth Brennan, Elizabeth Erwin Speakers: Fredda Brown, Christopher Oliva, 221 Carole Gothelf Continued on page 24 BEST COPY AVAILABLE PAGE 23 TASH Newsletter, August 1998 FRIDAY SESSIONS
Linking Research to Practice for Preservice Teacher Training Functional Interest Area: Positive Approaches/Research Speakers: Wayne Sailor, Rachel Freeman, Doug Assessment Anderson, Denise Poston to the Employment Crackerbarrel on Instructional Policy & System Change Issues Interest Area: Employment Strand Process Facilitators: Christopher Button, Ian Pumpian, Joe Shiba, Nicholas J. Certo, Zeek Harris Guide Inclusion Roundtable Interest Area: Inclusive Education Functional Assessment Guide Speakers: Dorothy Kerzner Lipsky, Alan Gartner This guide provides: A detailed process for conducting functional Surviving Due Process Hell: assessment Strategies for Support and Survival Forms and supplementary materials to support Interest Area: Advocacy this process Speakers: Gail M. McGregor; Lou Brown,Judy Gran Methods for organizing and reporting functional HR2020: ADAPT% Vision for the Future assessment informationportfolios and Interest Area: Advocacy narrative comprehensive reports (a sample Speakers: Jennifer Burnett, Bob Liston, Steve report is included) Verriden, Linda Anthony, Michael Auberger Le.Coni5uurino Facilitating Inclusion Through P.O. Box 6049-747Katy, TX 77491-6049 Person Centered.and Positive (281) 395-4978 Fax (713) 973-1271 Behavioral Support Strategies http//www.lrconsulting.com Interest Area: Positive Approaches Speakers: Sara Woolf, Carol Schwager, Philippa 1:00-2:00 PM Continued from page 23 The Dark Side of Benevolence: Orszulah, Daniel B. Crimmins Social Support System for Persons From Eugenics to Telethons and with Disabilities in Today's Russia Back Again Functional Behavioral Assess- Interest Area: Multicultural/International Strand Interest Area: Ethics and Rights ment: A School Based Assessment Speaker: Elena larshaia-Smirnova Speakers: Norman Kunc, Emma Van der Klift Interest Area: Positive Approaches Speakers: Suzanne M. Swindell, What Teachers Really Think The Transformative Power of Art Sara Egorin-Hooper, Sally Barbieri about Including Students with Interest Area: Creative and Performing Arts Severe Disabilities Speakers: Pat Claytor, Rose Kelly Friday, Interest Area. Research Speaher: Debra K Lynch Caregiving Issues of Aging Parents December 4, 1998 of Adult Children with Autism Fiesta Educativa Interest Area. Family 2:15 PM-3:15 PM Interest Area: Multicultural/Inclusive Education Speakers: Anne Donnellan,Jean Hauser, Charles Hart Portraits of Inclusive Schools in Speaker: Hector Mendez an Urban Setting Structuring Staffing for Inclusive International Inclusion: A South Interest Area: Urban Issues Strand African Perspective Schooling: Urban, Rural & Speakers: Mary Ann Fitzgerald, Jane Glodoski Suburban Strategies Interest Area: Inclusive Education/Multicultural Preparing For Partnership: Speaker: Joya Carter Interest Area: Inclusive Education Speakers: Ann Halvorsen, Linda Lee, Mary Preparing Pre-service Educators Interviewing Techniques That Falvey, Dona Meinders, Deborah L Tweit-Hull for Collaboration Are Successful in Obtaining Interest Area: Personnel Preparation/Higher Information from Persons with DD Anger Management 101 Education Strand Interest Area: Criminal Justice Strand Interest Area: Communication Speakers: Amy C. Donnelly, Amy Kuhns Bartlinslii Speaker: Mary Hayden Speaker: Linda Hertell New View - Cultural Sensitivity Simulations: Activities to "Hey, My Child Has a Disability" Friday, Enhance the Skills of Facilitators Interest Area: Early Childhood Interest Area: Communications Speakers: Jean Ann Vogelman, Annette Frazier, December 4, 1998 Speakers: Marilyn Chadwich, Carolyn Nuyens Denise Taylor 1:00 -3:15 PM 222 Continued on page 25 PAGE 24 TASH Newsletter, August 1998 FRIDAY SESSIONS
2:15-3:15 PM Continued from page 24 Early Conversations from the "Union Hall" Interest Area: Governmental Affairs Friday Poster Sessions Speakers: Ryan Geake, Debbie Reid Friday Friday Right Rules Interest Area: Crimina/ Justice Strand December 4, 1998December 4, 1998 Speakers: Tom Verkler, Rob Wybrecht Poster Session III Poster Session IV Use of FM Systems with Children 9:00-11:00 AM 1:00-3:00 PM Who Are Deaf/Blind Welcoming All Children: The The Tri-State Consortium on Interest Area: Research Speaker: Barbara Franklin Philadelphia Inclusion Network Positive Behavior Support Interest Area: Inclusive Education Interest Area: Positive Approaches Including the Family: Speakers: Lillian M. McCuen, Speakers: Tim P. Knoster, Don Kincaid, Suzanne Milbourne The Family-Centered Carol Schall, Jeannine Brinkley Multidisciplinary Process Make It Clear: How to Translate Beyond the Mandatory Interest Area: Early Childhood Strand Materials in Plain Language Topics: Developing Staff for Speakers: Lisa Schneider, Eileen Keenan, Interest Area: Communication Philippa H. Campbell Community Inclusion Speakers: Janet Pringle, Evean Miller Interest Area: Personnel Preparation Self-Advocate Leadership Speakers: Michael McAllister, Stakeholder Perspectives on Rosa Landes-McAllister for the 21st Century the Challenging Behavior of Interest Area: Advocacy Evaluating the Effect of Speakers: Mike Ward, Tia Nelis Individuals with Disabilities Interest Area: Research Self-Determination Why Shouldn't We Be Friends? Speaker Mike Ruef Instruction on Student Interest Area: Inclusive Education Self-Determination Ability Speakers: Wilson Buswell, Aaron Flint Individual Program Plan Interest Area: Self-Determination/Research Differentials in Segregated and Speakers: Dalun Zhang Jane M. Everson A Self-Advocate's Story: One Integrated Work Programs Man's Story of Confessing to a Interest Area: Employment and Careers Meeting Different People Crime He Did Not Commit Speakers: Keith Storey, Michael Pendergast on the Internet Interest Area: Criminal Justice Strand Interest Area: Communication Speaker: Russell Daniels Audiobooks to Promote Speahers: Shelley Trigg, Loraine Luterbach, Literacy Among People Who Sandra Cormier Peace Crackerbarrel Cannot Read Interest Area: Spirituality Strand Interest Area: Leisure and Recreation Demonstrating Research to Speaker: Alan Berger Speakers: Margaret Stout, Paul Stout Practice by Using Video Self-Modeling Interventions Creating an Inclusive Early Childhood Inclusive Interest Area: Transition Accountability System: Programs: Everyone Speakers: Kathy Ben, Marilyn Connor Colorado's Expanded Standards Welcome Here & Assessment Process Interest Area: Early Childhood Challenging Behavior: Interest Area: Inclusive Education Speakers: Sandy Gregory, Helen Trivits, What Do You Do When Your Speakers: Terri Rogers Connolly, Janet Filbin, Carol Workman Functional Assessment Beth Schaffner Results Are Unclear? Connections - The Power of Youth Interest Area: Positive Approaches Guidelines for Systematic Interest Area: Inclusive Education Speakers: Madonna Tucker Preference Assessment: The Speakers: Dianne Campbell, Will Main, Erin Bit y, Donna Daggett, Chris Biley, Sean Chausse Search for Meaningful Outcomes Interest Area: Self-Determination Speakers: Diane Browder, Fredda Brown Circles of Support, Community Multi-Age Center-Based Surrogate Parents: IDEA's Safety Faciliators, a Life with Meaning. Classrooms: Inclusive Net for Children under Public Does It Work? Environments for All Learners Guardianship Interest Area: Community Living Strand Interest Area: Inclusive Education Interest Area: Advocacy Speakers: Sally Sehmsdorf Speakers: Mary J. Foundopoulos, Susan Keetle Speakers: Lucille Zeph, Charles Zeph Creating the Ethical Organization Interest Area: Ethics/Rights 4. Speakers: Kathleen Biersdorff, Gail Davis.d2o PAGE 25 TASH Newsletter, August 1998 1998 CONFERENCE EXHIBITS
1998 TASH Conference Exhibits
The TASH Conference promises to School of Social WorkEastern be the place to host over 2,500 of Washington University your customers! Each exhibitor Singular Publishing Group, Inc. will receive three conference registrations, The Council on Quality and a complete booth package, TASH Leadership discounted hotel and airline rates, and United Cerebral Palsy Association of the opportunity to capture an audience King and Snohmish Counties ' rt. interested in the innovative services, University of San Francisco products, and information available to Visions for Independent Living assist people with disabilities from around the world. Added Exhibit features to maximize Plan to join us in the Exhibit Hall traffic in the Exhibit Hall: for our Grand Opening Reception on Complimentary coffee for exhibitors Wednesday, December 2, 1998 from in the exhibitor lounge. 5:00 PM to 7:00 PM. Food service in the Exhibit Hall, with The Exhibit Hall will be filled with ample space for attendees to browse exhibits of the products, publications and while enjoying breakfast or lunch. services TASH conference attendees are looking for. We welcome back many Conference Registration and Informa- vendors familiar to our attendees and we tion areas located near the Exhibit Hall. are pleased to have many newcomers The opportunity to receive a free set of joining us in Seattle. Plan to do your mailing labels of conference attendees. holiday shopping with us! Visual and Performing Art displays This year we will hold drawings for held in the Exhibit Hall throughout door prizes, in the Exhibit Hall each day the conference. of the conference. In addition to the daily door prizes there will be a grand prize drawing for two round-trip airline tickets in the Exhibit Hall on Saturday, Exhibit Schedule December 5th. Exhibit Set Up: Wednesday, To obtain an application or Some of the many exhibitors to be seen for more information contact December 2, 1998, at the 1998 TASH conference include: Rose Holsey at 800-828-8274 ext. 100, 12:00 PM- 5:00 PM Abingdon Press e-mail: [email protected] AFB Press/American Foundation for Opening Reception: the Blind Wednesday, s. Aurora MinistriesBible Alliance December 2, 1998, Bridge Ministries for Disability '5:00 PM- 7:00 PM Concerns Exhibit Hours: Brooks Publishing Company Thursday, Diverse City Press December 3, 1998, Dor ling Kindersley Family Learning 7:30 AM - 3:00 PM DynaVox Systems (formerly Sentient Systems Technology) Friday, Inclusion Press/Marsha Forest and December 4, 1998, Jack Pearpoint 7:30 AM 3:00 PM Institute on Disability/UAP Saturday, International Rett Syndrome Assn. December 5, 1998, Laureate Learning Systems, Inc., 7:30 AM- 12:00 PM Lifestyle Enhancement Service Magic Wand Solutions Exhibit Breakdown: Marian Management Saturday, National Professional Resources, Inc. December 5, 1998, Peak Parent Center 12:00 PM- 5:00 PM
BEST COPY AVAIABLE PAGE 26 224 TASH Newsletter, August 1998 TASH CONFERENCE VOLUNTEER
-411=._NW _ ALERT! With the TASH annual conference just around the corner, it's time to once again call upon the dedicated individuals who work so diligently to help us keep the 1111P' conference organized and running smoothly.
Your services are urgently needed!
Whether you've participated as a volunteer before, or would like to do so for the first time, we welcome your assistance.
Be Seen at If you would like to attend the conference and save on registration fees, this is the deal for you! Volunteers donate a minimum of 10 hours of service the TASH during the conference in exchange for complimentary registration to Media attend conference sessions during your non-volunteer periods. If you are interested, please contact Festival! Priscilla Newton at 1-800-482-8274, ext. 102 or e-mail: [email protected] Do you have a fantastic video that you'd like to market to the TASH audience? A video that depicts inclusive lives and experiences of people with disabilities; instructs parents or professionals who support people Not Able to Exhibit with disabilities; demonstrates school and community inclusion; or addresses specific training This Year? needs or current issues? If so, now is the time to take advantage You ean still reach the TASH Audience! of the opportunity to show your video to over 2,500 TASH If you are unable to have a booth in the conference attendees. TASH exhibit hall this year, but would like to take The TASH conference advantage of the opportunity to have your books, videos, bro- attracts an incredibly diverse chures, catalogs, or pamphlets distributed or displayed to TASH group of people with disabilities, Conference attendees, then this offer is for you! parents, advocates, administra- tors, educators, professional, and Brochures announcing new publications, videotapes, community members who are all conferences and workshops, or books which are concerned with rights, equity, targeted to parents, advocates, professionals, and full participation in the lives educators, community service providers, or anyone of people with disabilities. attending the conference are welcome. For only $149.00 per video, For $119.00 we will display your product in the exhibit show! we will show your film in the TASH Media Festival, and give you a 1/4 page ad in the confer- If you would like an application to be part of the Display Table, ence program free. please contact the TASH Central Office at 1-800-482-8274. 2 25 PAGE 27 TASH Newsletter, August 1998 SATURDAY SESSIONS
Saturday, Art Show & PerformingArts December 5, 1998 8:00 -9:00 AM in the Exhibit Hall The Many Things an Advocate Must Do Today to Bring About True Advocacy Interest Area: Advocay Speakers: Roy Brown, Joe Sebenick Developing Effective Inclusive Practices: What The Experts Are Saying. Interest Area: Inclusive Education Speakers : Lewis Jackson, Felix Billingsley, Diane Ryndak Video Documents - Breaking Down the Barriers Created by Words Interest Area: Self-Determination Speakers: Ryan Geake, Debbie Reid Supporting Young Children with Disabilities in Community-Based Programs Interest Area: Early Childhood Strand Speakers: John Filler, Janet Butz, Catherine Lyons, Jeffery Gelfer, Cynthia Lau
Teaming for Litercicy Development: It's Everybody's Job! Interest Area: Inclusive Education Title: "Herons" Speakers: Susan Keetle, Mary 3. Foundopoulos The Road Traveled ARTIST: MARLON MULLEN Interest Area: Inclusive Education Speakers: Jane Glodoski, Jessie Vance, Marcus About the Artist: Marlon has been describedas a "painter's painter" His images are semi- Loppnow, Brenda Boggs, Tracy Carus abstract and eclectic. Marlon exhibits his work through the NationalInstitute of Art and Disabilities (MAD). To contact MAD, call 510-620-0290or visit their web site at hap:// Free and Appropriate: Monitoring, thecity.sfsu.edu/niad Accountability, and IDEA This year's conference committee is encouragingan art display and a Interest Area: Inclusive Education schedule of performances in the TASH Exhibit Hall Speakers: Diane Lipton, Mike Remus, Kathleen to celebrate the contribution Gee, Alan Coulter that people with disabilities have madeto their communities through arts and entertainment. Whether your interest is in art, music, danceor drama, you are Across the Lifespan: Case Studies invited to participate in this show. of Social Integration Artists are encouraged to display a sampling of their workin the art show, which Interest Area: Community Living will be open during the hours of the exhibit hall. (seepage 26 for specific times). A Speaker: Zana Marie Lutfiyya biography of each participating artist will be listedin the conference program. The Power of Teaching Performing Artists will have the opportunityto perform on stage in the exhibit hall at a pre-scheduled time during the designated Interest Area: Higher Education show times each day. Speaker: Freddie Vaughns The stage will be located adjacentto the art show and the food service area. Participants will have the opportunity toeat lunch or a snack while enjoying the Are We Listening? Three performances. A specific schedule of performances willbe listed in the official Perspectives on Transition: conference program. Professionals, Parents, and For information on participating in the show, callDenise Marshall at 1-800- Young Adults 482-8274 x103 or email [email protected]. Interest Area: Transition Strand Speaker: Bud Cooney Continued on page 29 BEST COPY AVAILABLE PAGE 28 2 2 6 TASH Newsletter, August 1998 SATURDAY SESSIONS
8:00-9:00 AM Continued from page 28 Person-Centered Planning: Much Supporting Inclusive Practices via More Than Planning! a Statewide Peer to Peer Network "She'll Only Use It To Get Her Interest Area: Self-Determination Interest Area: Inclusive Education Own Way" Speaker: Rick Tutt Speakers: de Vergne Goodall, William R. Sharpton, Margaret Coady, Margaret Lang Interest Area: Communication Valuing All Abilities: Putting the Speaker: Trevor McDonald Heart in Inclusion Creating Inclusion: One Child's Family & Service Coordinator Interest Area: Positive Approaches Adventures in Community Living Perceptions of Outcomes from Speakers: Karen Larsen, Thom Worlund, Interest Area: Positive Approaches Edi Purvis Speakers: Thomas Robingon, Sharon Taylor the IFSP Interest Area: Early Childhood/Research Broadening School-Based It's My Life: Preference-Based Speakers: Lee Byoung-In, Eunhee Paik Support Teams Planning for Self-Directed Goal Interest Area: Inclusive Education Meetings From the Cradle to the Grave Speakers: Nadine Lada, Nancy Hurley Interest Area: Criminal Justice Strand Interest Area: Self-Determination Speaker: Emilee Curtis Speaker: Jeri Houchins The Police Interrogation Room Interest Area: Criminal Justice Strand: Creating Responsive Services: An Institution is Not a Home: Speaker: Robert A. Perske Lessons Learned Family Perspective on Interest Area: Advocacy Organizational Support Speakers: Kate Blisard, Mary Kay Weber, Jeffrey Saturday, Interest Area: Research Bruce, Bernard King December 5, 1998 Speakers: Susan O'Connor, Kathleen Hulgin Whole Brain Learning: Inclusive 8:00 -10:15 AM Organizing Parents for Systems Academics, Music & Games Change Interest Area: Inclusive Education Translating Therapy Into Family/ Interest Area: Advocacy Speaker: Robin Smith Counseling Life Speakers: Robert G. Mochan, Claire Hoffman, Interest Area: Early Childhood Joyce Moss, Jennifer Ashley, Ginny Conway Preserving Respite Care As A Speaker: John Murray Valued Support for Families Spirituality and Leadership: Interest Area: Family Yearning for Community: Implications for Inclusive Schooling Speakers: Jeff Bassin, Colleen Willis, Maggie Edgar Families, Friends and Partners Interest Area: Spirituality Reflect on Life-Sharing Speaker: Maureen Keyes Forging New Roles in Transition Interest Area: Community Living Strand for Parents of Young Adults Speaker:David Wetherow "What Works?": Effective School- Interest Area: Tranistion Strand Wide Behavior Support Practices Speakers: Don McDermott, Toni McDermott, Special Education: Systems Interest Area: Positive Approaches Ron Broome, Kathy Broome Change from the Legal Speakers: Pat Mirenda, Catherine Remedios, Perspective William McKee Lifelong Inclusion in an Interest Area: Advocacy Urban Setting Speakers: Leslie Seid Margolis, Eileen Ordover Building Partnerships to Include Interest Area: Inclusive Education All Children in Child Care Speakers: Janice Payne, Linda E. Rosenthal, The Sexual Knowledge, Attitude Interest Area: Early Childhood Strand Walter Thies, Charles Fitzgerald & Feelings of People with Speakers: Marilyn S. Dunning, Karen Martin Developmental Disabilities Staff Meeting the Needs of Students Who Merging Reform Efforts: & Families in Austria Severely Challenge High Schools Accountability for the Learning Interest Area: Sexuality Strand Interest Area: Students Who Severely of All Students Speakers: Wolfgang Plaute, Ilse Polleichtner, Interest Area: Inclusive Education Antonia Schlick Challenge Schools Speakers: Beth Schaffner, Joan E. Rademacher, Speakers: Mary Jane Rapport, David Riggs, Linda Montoya, Janet Filbin Saturday, Andrew Wilson A Child with a Learning December 5, 1998 Transforming Regular and Special Disability Becomes a University Education: High Standards for All Professor Interest Area: Inclusive Education 9:15 -10:15 AM Speakers: Maria Timberlake, Betsy Enright Interest Area: Self-Determination Creating a Brighter Future Speaker: Dayle A. Upham Through Individual-Driven Individual and Sound-field FM Music Time: The Perfect Supported Employment Amplification: Managing Inclusion Tool Interest Area: Employment Strand "Listening" in Inclusive Settings Speaker: Laura Owens-Johnson Interest Area: Related Services Interest Area: Related Services Speaker: Wendy Zieve Speakers: Robert Hexer, Lynn Frateschi, Carol Flexer Continued on page 30 BEST COPY AVAILABLE 2 PAGE292 rij TASH Newsletter, August 1998 SATURDAY SESSIONS
9:15-10:15 AM Continued from page 29 Transition Services and Best The Deaf-Blind Community Practices: A Five Year Study Interest Area: Deaf Culture Brothers, Friends, and Colleagues: Interest Area: Transition Strand Speakers: Donna Miles, Jelica Nucclo Working Together as Advocates Speakers: Rachel McMahan, Joan Mazzoli, Interest: Advocacy Robert Baer, Lawrence Dennis Unexpected Benefits of High Speakers: Joe Meadours, James Meadows School Peer Tutoring Employment Multiculturalism in Interest Area: Inclusive Education Killing the Autism with Kindness the New Century Speakers: Amy Wildman Longwill, Phil Wilson, and Cool Talk! Interst Area: Employment Harold L Kleinert Interest Area: Self-Determination Speakers: Vener Azurin, Teresa Cronin, Susan Speakers: Rosa Landes-McAllister, Prout The People First International Patricia Creazzo, Patricia Ann Fernandez, Conference: Tools from the U.N. Mary Lapos, Kendall Seybert, Jennifer Paige Challenging Behaviors: Positive Seybert, James Seybert & Our Quality of Life Survey Solutions - Contextualizing Interest Area: Advocacy/Research Positive Behavior Support From Institutions to Inclusion- Speakers: Beverly Tallman, Kristin Ryan, Interest Area: Positive Approaches Joseph Pichler A Roadmap for Success Speaker: Tim P Knoster Interest Area: Management Issues Self-Determination: Speakers: Max Chrnura, Marti Romero- Mitchell, Patty Veselsky Saturday, Management of Personal Lifestyles by Individuals with Making a Difference:Initiating December 5, 1998 Extensive Needs Family Centered Care in the Nursery 9:15 -12:45 PM Interest Area: Se1f-Determination Interest Area: Family Speakers: Scott Arnett, David Lovett, Laura Speahers: Tracey Finch, Maureen Godwin, Stop the Hurting: Positive Bixler, Kathryn Haring Nancy Reese, Kerry Hodgkinson,Joanie Vanderpol Supports for People with Autism Interest Area: Community Living Gays & Lesbians with Disabilities Creating Futures Together: Speakers: Jeffrey L Strully, Charlotte Mazzeo- Talk to the "Organized" Gay Using Participatory Action to Comeione, Jennifer Lengyel, Cindy Strully Community Transform Services Interest Area: Sexuality Strand Interest Area: Transition Strand Saturday, Speakers: Ann Helen Lee Lightning, Shawna, Speakers: Deborah A. Gilmen Janet Bonnie Shoultz May,Elizabeth DePoy, Ann Hatmann December 5, 1998 Positive Peer Pressure: Using Issues in Assessment, The Death 10:30 -11:30 AM Peers to Assist Students with Penalty & Mental Retardation Children and Youth with Special Needs Interest Area: Criminal Justice Strand: Disabilities as Perpetrators Interest Area: Inclusive Education Speakers: William Edwards, Jennifer Johnston, Interest Area: Criminal Justice Strand Speakers: Janice Siebenhaar, Cynthia Walker, Denis Keyes, Caroline Everington Speaker: Patricia Sullivan Carolyn Auld Saturday, Internal Control Psychology: Creating Inclusive Dance Classes Relationships, Self-Determination for Children with Disabilities December 5, 1998 and Special Education Interest Area: Creating/Performing Arts Speakers: Robin Greenfield, Melinda Lindsey, Interest Area: Positive Approaches Ellen Hunt-Landry 9:15 -11:30 AM Speakers: David Sansone, Patric Barbieri, Advocates and Allies Trish Costa How An Emerging Theory of Interest Area: Criminal Justice Strand Speakers: Diane Bryen, Lisa Sonneborn, Sharon Adapting The World to Meet Development Can Inform Potter, Ray Gagne Your Needs Positive Supports Interest Area: Employment Strand Interest Area: Positive Approaches Alexander's...Very Bad Day: Speaker: Laura Owens-Johnson Speakers: Lucille Zeph, Alan Kurtz A Positive Supports Approach Interest Area: Positive Approaches Parents & Professionals: Building the Bridges Between Speaker: Paul Selby How Do We Communicate and Communication and Positive Advocate Together? Behavioral Change Working Together for Better Interest Area: Family Interest Area: Positive Approaches Speaker: Christine Cox Solutions Speakers: Nancy Algert, Brooke Durbin, Kathy Interest Area: Positive Approaches May, Alison Strand Speaker: Julie Shryock Envisioning A Future For Transition from School to Career: Your Family The Challenge of Person A Success Story Interest Area: Early Childhood Strand Speakers: Jean Ann Vogelman, Annette Frazien Centeredness Interest Area: Transition Strand Denise Taylor Interest Area: Positive Approaches Speakers: Carole Isakson, Todd Stabelfeldt, Speakers: Patricia Fratangelo, Michael Kendrick Sheryl Burgstahler Continued on page 31
BEST Inpv AmuA PAGE 30 2 2 g TASK Newsletter, August 1998 SATURDAY SESSIONS
10:30-11:30 AM Continued from page 30 Delivering the Information "Start with the Arts" in Early So It Works Childhood Education Saturday, Interest Area: Positive Approaches Interest Area: Early Childhood Strand Speaker: Larry Douglass December 5, 1998 Speaker:Bonnie Bernau One of Us Personal Safety Training for 10:30 -12:45 PM Interest Area: Family Persons w/DD & Facilitation of Supporting Students with Autism Speaker: Nancy Rosenau Healthy Social Relationships at the District and School Level Interest Area: Positive Approaches Interest Area: Inclusive Education Using Project-Based Instruction Speakers: Stacey Hoffman, Susan Whaley Speahers: Vicki Rothstein, Catherine Remedios, to Ensure Active and Meaningful Paul Malette, Christine Brodie, Allen Stevens Participation Inclusive Education Scheduling - Interest Area: Inclusive Education Friend or Enemy? Creating Community-based Speakers: Karen Waterbury, Jane Glodoski, Interest Area: Inclusive Educaiton Housing Options in Kendra Paar, Mona Mehra Speakers: Joanne Suomi, Michele Ziegler Washington State Interest Area: Community Living Strand Inclusive Education & Standard Fetal Alcohol Syndrome Cradle to Speakers: Jan Navarre, Gil Roos, Forest Wetzel, Based Reform: Developing Schools Grave: What It Is, Why It Hurts Brigett Helsten, Rene Roos, Diane McCalmon as Caring Communities for ALL Interest Area: Criminal Justice Strand Interest Area: Inclusive Education Speaker: Ann Streissguth An Inclusive Adult Day Care Speakers: Marquita Grenot-Scheyer; Kristin Geenen Model Sexual Orientation Interest and Interest Area: Aging "I Guess Like Sometimes I'm in the Action Group Speakers: Holly Menzie, Mary McMurray, Dark": Teachers/Paraprofessio- Interest Area: Sexuality Strand Patricia A. Colombo nals Unprepared for Inclusion Facilitator: Ann Heler Interest Area: Inclusive Education Ensuring a Family Voice Speakers: Susan M. Hamre-Nietupski, Ann McKee Developing Transdisciplinary in Inclusive School Teams in Rural Areas Improvement Efforts Without "Vision" You are Interest Area: Related Services Interest Area: Inclusive Education "Blind" to Opportunity Speakers: Robin Greenfield, Jeff Brockett, Jane Speakers: Beth Schaffner, Janet Filbin, Robin Interest Area: Self-Determination Coe-Smith, Gail Brown, Kathryn Welsh Brewer, Romie Tobin Speaker: Kathleen Urschel Effective Transitional Planning: Building Linkages between Enhancing Inclusion & Self- The Journey from Career Assessment & Instruction: Determination: Teaching Awareness to an Initial Career Outcomes-Oriented Strategies Students to Include Themselves Interest Area: Tranistion Strand Interest Area: Inclusive Education Interest Area: Inclusive Education/Research Speakers: Lynn Frateschi, Mary Wideman-Blake Speakers: Jan Writer, Terry Murphy Speakers: Martin Agran, Carolyn Hughes, Michael Wehmeyer Embracing Disability: Over Representation: The Spiritual Side Problem or Symptom? Florida Changes!! An Update on Interest Area: Spirituality Interest Area: Governmental Affairs State Efforts for Systemic Change Speaker: Kathyrn O'Connell Speakers: Dorothy Kerzner-Lipsky, Alan Gartner Supporting Inclusion Interest Area: Inclusive Education The Criminal Justice System as a Saturday, Speakers: Diane Ryndak, Denise Clark, Donna Level of Intervention for Students Gilles, Terri Ward, Michelle Polland with Disabilities December 5, 1998 Interest Area: Advocacy The Role of the Family Advisor in Speahers: Barbara Ransom 11:45 -12:45 PM Supporting Parents in Obtaining Self-Determination for Inclusive Education Parents Guide to Mental Health Individuals with Cognitive Interest Area: Inclusive Education and Community Connectors Disabilities in Alternative Speakers: Judith Terle, Selene Almazan Interest Area: Family Community Programs Interest Area: Self-Determination Speakers: Lori Noto, Robert McCaffrey, Justin Bruckie, Suki Incillo World Peace Through TASH Community-Based Instruction in This year we will catch up from last year, decide on direct action Neighborhood Schools TASH can take to promote World Peace, and spend some time being Interest Area: Inclusive Education peaceful ourselves. Please join the Peace Interest and Action Group Speakers: Jane Scarffe, Vickie Andrews as we continue our 5th year of promoting peace. Date: 12/4/98 Time: 2:15-3:15Facilitator: Alan Berger
PAGE 31 229 TASH Newsletter, August 1998 CHILD CARE FORM TASH Child Care RegistrationForm
Please fill out this form and return to TASHat the address listed below, NO LATER THAN 11/15/98. MAKE CHECKS PAYABLE TO TASH. A confirmation letter with release forms anda history/information form will be sent to you once payment is received. Please indicate theage each child will be on December 1, 1998.
CHILD'S NAME AGE: SEX: BIRTHDATE: CHILD'S NAME AGE: SEX: BIRTHDATE: CHILD'S NAME AGE: SEX: BIRTHDATE:
Rates are $2.00 per hour per child witha consecutive three hour minimum period required.
Day Hours of Specific Hours of Number of TOTAL Operation Care Requested Children Per Day
Wednesday 8:00-4:30 $ 12/2/98
Thursday 7:45-5:45 $ 12/3/98
Friday 7:45-5:45 $ 12/4/98
Saturday 7:45-2:30 $ 12/5/98
Non-Refundable Reg. Fee $ $5.00 GRAND TOTAL $
Payment: *Check Visa Mastercard Discover Card# Exp. Date
The Child(ren) named above will be released ONLYto the person(s) signing this application and the fol- lowing additional person(s): Father/Guardian Full Name: Signature: Mother/Guardian Full Name: Signature: Address: City: State: Zip: Home Phone#: Daytime Phone#:
Mail this completed Registration Form and FULL PAYMENT payablein U.S. Funds NO LATER THAN 11/15/98 to TASH 29 W SusquehannaAvenue, Suite 210, Baltimore, MD 21204.
For Office Use Only Amt. Recvd. Amt. Due On Timeline In Comp.
PAGE 32 230 TASH Newsletter, August 1998 CONFERENCE REGISTRATION FORM vattres 1998 TASH Conference Registration Form Creating Futures Together Z..`) Seattle, December 2-5, 1998
Mail form to: TASH 29 W. Susquehanna Avenue, Suite 210, Baltimore MD 21204-5201 Fax form to: 410-828-6706 Questions? Call 1-800-482-TASH Conference 198 TASH The registration form can also be found at our Web site at www.tash.org SEATTLE, WASHINGTON You may use this form to register for the conference, become a TASH Member, or both! Please Print First Name Last Name Preferred Badge Name Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country This address is: 0 home LI work 0 school 0 other Billing address (if different from above) Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country Daytime Telephone Work Telephone Fax e-mail This address is: 0 home 0 work 0 school 0 other
Please circle the appropriate numbers that describe your affiliation (not more than 3):
1. Administrator/Adult Services 12. Psychologist 2.Administrator/Education 13. Regular Education Teacher/Admin. 3.Administrator/Other 14. Related Services Provider 4. Adult Service Provider/Staff 15. Self-Advocate To Become a TASH Member or 5. Early Childhood Services 16. Social Worker Renew your Membership NOW... 6.Government Personnel 17. Speech/Language Pathologist 7. Legal Services Provider 18. Special Ed. Teacher/Support Spec. You may also use this form to become a member at the same time you register for the TASH conference! 8. OT/PT 19. Staff Development/Trainer This allows you to register for the conference at the 9.Parent/Family Member 20. Student reduced TASH member rate (see other side for mem- 10. Professional/Public Policy Advocate 21. Supported Employment/Day Personnel ber registration rates) or, use this form to join as a 11. Professor/Instructor (College/University) 22. Other member without registering for the conference. Please fill out this section only if you are registering for the conference: Membership rates are listed below. Determine the TASH Membership: I am a current member 0 Individual 0 Agency appropriate membership category, be sure to fill in Membership# the applicable rate on the reverse side of this form when entering payment information, and include If you are a student member, please list your Student ID# payment at the time you submit your conference reg- OI am becoming a member now (please be sure to enter the applicable cost on the istration payment. reverse side) LII am renewing my membership now (please be sure to enter the applicable cost on the General International Membership (individuals)$88.00 reverse side) Agency/Business/University International Membership $ 200.00 Optional Conference Information Requested (please request by October 16, 1998) Self-Advocate, Parent, Full-Time Student $45.00 O Accessibility Details Family International Membership O Sign Language Interpreter (2 People) $136.00 O Child Care/Youth Activities (Note: you must fill out an application in advance to Lifetime International Membership $1,000.00 register. Space is limited and there is a nominal fee.) (Add $10.00 to memberships in Canada and O Roommate Referral Program $25.00 to memberships outside of the U.S. and O List any accommodation needs Canada to cover additional postage costs.) Application for CEU credits have been made to the following organizations: Fill in appropriate membership rate on Line 8 on reverse side of this form. National Association of Social Workers, American Physical Therapy Association, The American Occupational Therapy Foundation, American Therapeutic Recreation Association and local education agencies. O I would like to request further information on CEU credits List Type MST COPYAVAILABLE PAGE 33 c)231 TASH Newsletter, August 1998 CONFERENCE REGISTRATION FORM
1998 TASH Conference - Creating Futures Together December 2-5
Current or Joining Please Enter Registration Rates Non-Member 1998 Conference I nternational Applicable Cost Member
General $199 $305
Student/Paraprofessional/Parent (Professional) $135 $229
Self Advocate/Parent (non-professional) $ 49 $ 79
One Day Only El Thurs 11Fri D Sat $ 99 $129
1. Cost of Conference Registration from above
2. Subtract Discount if applicable. (Note: Only one discount can be applied.)
a. Subtract $20 per registration for groups of 5 or more registering for the full conference (all registrations must be mailed in the same envelope) 2a.
b. Subtract $50 per full conference registration for o regular education teacher registering with a special education teacher, a paraprofessional, or related services personnel; or for any support staff person registering with a self- advocate (must be mailed in the same envelope). Indicate name of person with whom you are registering: 2b.
3. Add $40 late fee if you are registering after November 13'h. After November 13'h, all registrations will be on-site 3.
TOTAL Conference Registration Fee 4.
TASH Techs: TASHMembers $65 1° ChoiceTASHTech # Tech # Non-Members $80 2^d ChoiceTASH Self-Advocate/Parent $40 Note: There is no charge for theChapter LeadershipTASHTech.
5. Add Cost ofTASHTech (full day pre-conference workshops; see descriptions, page 7) 5.
6. Add $85 to attend the Special Pre-Conference Symposium on Dual Diagnosis 6.
7. TOURS a. Add $42.00 for the Grapes &HopsTour (see description on page 3) 7a b. Add $28 for the Seattle City Tour (see description on page 3) 7b.
8. AddTASHMembership Dues if you are joiningTASHInternational or renewing with this application (see rates on front page of this form) 8.
9. Add $15 to also join yourTASHChapter (only applicable if you are joining or renewing membership for TASHInternational now) 9.
10.Yes, I will add $5 to support a self-advocate to attend the conference 10.
TOTAL Enclosed (Lines 4-10)
Payment Terms TASH Federal ID#:51-0160220 Registration will not be accepted without payment by check, official purchase order, or credit card authorization. Please note that payment must be in U.S. Funds only. A $25.00 processing fee will be deduded from cancellations received before November 6, 1998, and added to purchase orders not paid within 30 days after the conference. No refunds will be given for cancellations after November 6, 1998. A $15.00 fee for returned checks or unauthorized charges will be assessed. Check enclosed Purchase Order/State Voucher No.
Visa Mastercard Discover Card Number Exp. Date
Signature fl,t01 I"P: L TASH CONFERENCE
1998 Conference 1998 Proposal Reviewers Local Committee
Many thanks to the following people who spent countlesshours Our thanks also to the following for providing invaluable reviewing the proposals submitted for this year's conference. information about the local area, for recruiting local We appreciate your time and knowledge, and truly could not presenters and volunteers, testing the tours, and most accomplish such -a mammoth task without you! importantly for showing such enthusiasm and spirit, both of which will help ensure a dynamic and lively conference. Richard Amado Tim Knoster Thank you! Mary Anketell Debra Kunz Cathy Apfel Valerie Lava Susan Atkins Shirley Milliren Lynda Baumgardner Donna Lehr Colleen Blakely Cheryl Monk Diane Baumgart Ming-Gon Lian Alan Berger Barbara Ludlow Dennis Cainpbell Jan Navarre Beth Brennan David Mank Carolyn Carlson Joanne Preston Nancy Meltzer Fredda Brown Shan Shan Chien Leah Preston Cynthia Burkhour Patricia Mueller Kim Preston Barbara Buswell Anna Lou Pickett Cindy Christianson Michael Callahan Beverly Rainforth Kathy Collman Melanie Richardson Donald Cardinal Linda Rammler Duane Davis Lois Rogers Josephine Chappell Patricia Rogan Steve Elliott Mike Rogers Brian Cox Marcie Roth Dan Dotson Diane Ryndak Cathy Fromme Lyle Romer Susan Dotson Caren Sax Jenny Grant Mary Romer Patti Scott June Downing Michelle Grant Kasaundra Salinas Barbara Dyer Mayer Shevin Elizabeth Erwin Bonnie Shoultz Norris Haring Susie Schaefer Douglas Fisher Judith Snow Jackie Henderson Megan Seeyle Katherine Fox Charlotte Spinkston Monique Hernandez Sally Sehmsdorf Deborah Gilmer Fred Spooner Vicki Isett Margaret-Lee Thompson Darlene Hanson Julie Stone Norris Haring Wally Szyndler Sharon Jodock-King Pam Wilson Angie Hawkins Darlene Talavera Alan Jodock-King Laura Wood Elisabeth Healey Jerry Whitworth Jerry Kessinger Margy Woodward Ann Heler Pamela Wolfe Linda Heyne Gail Zahn Carrie Masten Joseph Wykowski Robert Holland Nancy Zollers Ken Miller
1998 National Conference Committee Carol Berrigan Norris Haring Mary Romer Thank you to the above committee members who were Douglas Biklen Elisabeth Healey Susie Schaefer active in shaping this year's conference. TASH members Beth Brennan Donna Lehr Mary Stauffer who have recently joined the commiteee or are inter- Lou Brown Tia Nelis Joseph Wykowski ested in joining the committee for the 1999 Conference Barbara Buswell Elizabeth Obermayer Lucille Zeph will receive information about future committee meet- Mark Doyle Linda Rammler Nanc}, Zollers ings. Any questions should be directed to Denise Marcie Goldstein Marshall, 410-828-8274 x103 or [email protected]
PAGE352 3 3 TASH Newsletter, August 199e TASH CONFERENCE
A letter to TASH membersfrom Deborah Martin West aboutour friend and colleague, Lee West:
On October 7, 1997 Lee West, the President of the Louisiana (LA)TASH South and a long-time member of International TASH, passed away. While visiting friends in his home state of Tennessee, Lee died quietly in his sleep from a heart condition. Hewas 41. Lee gave many years of heartfelt service to TASH and to persons with disabilities throughout hiscareer Lee was my husband, my colleague and my best friend. He loved his work and was a passionate advocate. He worked tirelesslyto advocate for state-of-the-art services for those he served.Only fifteen short years ago, he introducedme to my very first TASH conference in Chicago, eager to ensure that I saw all the "musts" like Lou, Ian, Mary and Gary, to name a few. It wasn't long before everybody knew Lee. Hewas not shy about expressing his views on how to improve each TASH conference, and he attended every board meetingto be sure he would be heard. He always said that going to the TASH conference every year helped him confirm that he wasn't the onlyperson who believed in the progressive techniques he promoted at home in New Orleans. Over the years, he accomplished much to be proud of.He started one of the first supported employment agenciesin our state, worked under a grant that introduced community based programming in the New Orleansarea school systems that still exists today, wrote millions of dollars of grants to assist in obtaining progressive services, and co-founded the largestcase management agency in the state of Louisiana. One accomplishment he was especially proud of occurredjust one short year before his death. For almosta decade, Lee lobbied to bring the national conference to the city he loved most and called home, New Orleans. He lived to see that happen and it made himvery happy. I know that he will be missed by all who knew himat TASH. At his funeral, the priest said that when you die, all of the good things you have done on this earth will be waiting foryou with God. Surely, Lee was met by his lifetime of advocacy and love. Yourprayers for him will be deeply appreciated.
Deborah Martin West July 14, 1998
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- PAGE 36 23 4 TASH Newsletter, August 1998 IDEA
R LIZE THE DREAM A Dag To End Special Segregation Sunday, October 11, 1998 in Washington, DC 1:00-4:00 PM The Ellipse (between the White House and the Washington Monument) The M.A.I.N. Event (Sponsored by MAIN- Mighty Alliance for Independence Now) (A Project of TASHI)
Make your plans now to gather in Washington D.C.on Sunday, October 11, 1998 with thousands of children, parents, teachers, administrators, and disability advocates to call for equality of opportunity for children with disabilities. In 1954, the Supreme Court Decision in Brown v. Board of Education stated that:
"We come then to the question presented: Does segregation of children in public schools solely on the basis of race, even though the physical facilities and other "tangible" factors may be equal, deprive the children of the minority group of equal educational opportunities? We believe that it does...We conclude that in the field of public education the doctrine of 'separate but equal' has no place. Separate educational facilities are inherently unequal. Therefore, we hold that the plaintiffs and others similarly situated for whom the actions have been brought are, by reason of the segregation com- plained of, deprived of the equal protection of the laws guaranteed by the Fourteenth Amendment." * US Supreme Court Decision as presented by Chief Justice Earl Warren on May 17, 1954.
In spite of the fact that the Supreme Court ruled with family members, friends, neighbors, your PTA, against 'separate but equal' in 1954, it was not until ad- your teachers, and your elected representatives. Bring vocates on behalf of African American children pushed your friends, big and small, and join us! the issue, that the discriminatory practice of forced seg- For additional information or to be added to our regation ended. event update list, e-mail [email protected], call 1- The Individuals with Disabilities Education Act 800-482-8274, or check out our website at (IDEA), passed nearly 25 years ago, promised children www.tash.org. with disabilities that, from that day forward, they would be recognized, appreciated, and educated as full About MAIN participating, young Americans whose right to life, Mighty Alliance for Independence Now is a group liberty, and the pursuit of happiness would be afforded of individuals (advocates, activists, parents, and adults them, regardless of the nature of their disability. with disabilities) who have long recognized, both America has not kept its promise to children. America individually and collectively, that a solid advocacy body has not made IDEA the law of the land. If every child is must exist that defends and advances the concept of to grow up to be truly free, IDEA must be implemented equality of opportunity for children with disabilities. in every school district, every school house, every We dedicate MAIN to the purpose of securing freedom classroom in this country! IDEA can work! for children with disabilities and empowering these As a Civil Rights issue, MAIN sees this 'special children to master their own destinies. For the purposes segregation' as just as important to families of children of establishing the framework and foundation of MAIN, with disabilities as school desegregation was to African and seeing our first project through to its completion, American families in the 1960s. TASH is sponsoring MAIN as a "project of TASH." Join us for a day of awareness in the heart of TASH and MAIN welcome the partnership of additional American democracy. Guest speakers will include individuals and groups as co-sponsors. Co-sponsorship national policymakers, disability and children's advo- is critical to the provision of necessary person-power, cates, educators, entertainers and sports personalities. supplies, equipment and funds needed in our work. Spread the news of this event far and wide. Share it BEST COPYAyAuRLE
PAGE 37 235 TASH Newsletter, August 1998 TASH CONFERENCE
Seeking Individuals with TASH gratefully acknowledges Disabilities To Be Peer Reviewers the support of the following OSERS has contracted with Educational Services, Inc. corporate participants in the (ESI) to provide assistance in the review andmanagement of 1998 Annual Conference: discretionary grant applications. ESI seeks qualified individuals with disabilities from diverse backgrounds and GRAY LINE OF SEATTLE minority reviewers who can provide unique perspectives. GREATER SEATTLE CHAMBER OF COMMERCE Proposal areas could include special education, independent MICROSOFT CORPORATION living, assistive technology housing, employment and professional training. SEATTLE-KING COUNTY CONVENTION & VISITORS BUREAU Review of these applications will require individuals who are knowledgeable about the subject area, sensitive to the needs Our sincere thanks are also of the field and competent in determining the qualities needed extended to the following for a successful project. Each review panel will consist of3-5 reviewers and a panel manager from OSERS. businesses for their generous Reviewers are required to travel to Washington, D.C. for 2- donations of door prizes: 3 days. Travel and accommodationexpenses will be covered. Reviewers will receive an honorarium of $100per day. CAFE WOLFGANG PUCK Reviewers may receive the applications prior to coming COLUMBIA WINERY to Washington, or they may receive the applications on site PEPSI COLA COMPANY and review during their stay. PORT CHATHAM SEAFOODS If you are interested in learning more about becominga peer reviewer of OSERS, or would like to complete an SEATTLE SEAHAWKS application, e-mail your name, address and telephone SEE'S CANDIES number to Marcie Goldstein at [email protected] UNEXPECTED PRODUCTIONS
A Ik
It is with deep sadness that we announce that our friend and fellow TASH-SN board member, Ed Jolly, has passed away. Ed's unfailing optimism and work on behalf of people with disabilities in the I as Vegas community buoyed us all. He taught us all that kindness and genuine caring do have a place in our mission to provide opportunities for community inclusion and employment for all. Although we all worked together for onlya short time, Ed's spirit will continue to live on through all of us. We offer our heartfelt thoughts to his family of friends, co-workers, and church community members. 4' "%ri
The Board of TASH-Southern Nevada Mark Moody, President
BEST COPY AVAILABLE PAGE 38 2.36 TASH Newsletter, August 1998 TASH CONFERENCE
Open Forum on Access to Outdoor Recreation cATioN Friday, December 4, 1998 .-KRyIcTs.;'.piRECTog 10:30 AM-11:30 AM Facilitator: Cynthia Burhhour
TASH is represented by Cindy Burkhour, Convener Wayne Community Living.Services,,Inc: (WCLS)is a of the Leisure and Recreation Interest and Action Group on the Outdoor Developed Areas Regulatory Negotia- private,:nOn-Profit -agency that stipportS,OVer, 1,700 tion Committee of the US Access Board. This group of people with developmenta'l-disabilities,and their negotiators from across the country, representing both farnilies in Wayne COunty.MiChigan.: WC1.5 is an people with disabilities and providers of outdoor internationally recogniied leader in the. . recreation opportunities, has been charged by the US deinstinitiorialization povement. Along with houSing; Access Board with the task of developing accessibility : . WCLS supports peOple Withjob placement and clinical design rules for outdoor recreation areas such as picnicking, camping, trails, etc. for implementation services. .WCLS,is highly Oriented tOward full inclusion under the Americans with Disabilities Act. This open into the community With special emphaSis in support- forum will provide an opportunity for input by the TASH ing people in real job situations. membership to our representatives. A brief outline of the progress to date and the future activities of the committee We are currently seeking a creative, multi-talented will be discussed. This is your opportunity to share person to administer our Stipported employment accessibility to outdoors for ALL people. program. Essential skills include grant writing, and the ability to work with private industry and management
informationsystems. Qualified candidateS should be . able to provide strong value's towards overcoming barriers td employment for people with significant Yoga In The disabilities..-BaChelor's,Degree in Human SerVices area and three *IS experience WOrking with people with Morning develdpmental disabilitieS preferred.
Instead of coffee and donuts, or worse. . . Exceptional fringe benefit package, including vision, some of us thought it might be nice to dental, health, life, short/long terM disability; deferred start the day off practicing Yoga. compensation plans, 5 weeks pai'd leave time the first year, and a highly competitive salary range ($34,034 to The practice of Yoga is an ancient form of healing $51,156). and fitness for the entire body, mind and spirit. It doesn't matter what your present physical ability or condition is, or what you can or cannot do. There is no competition as you practice, you will do better and feel better. This is a time of day for SEND RESUME OR CONTACT: anyone who wants to explore peace of mind, and energize yourself for the day through Yoga. Wayne Community Living Services, Inc. We'll also do breathing exercises and meditation. Human Resources (734) 722-4089 See you at 7:00 AM each morning. Fax: (734) 467-7646 If you want, bring a towel. 35425 Michigan Avenue West Instructor: Alan Berger Wayne, MI 48184-1687
BEST COPY AU w_g PAGE 39 TASH Newsletter, August 1998 TASH NEWSLETTER
Priscilla Newton, Editor Policy Statement Executive Board It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell by the TASH policy on the use of people-first language Donna Gilles that emphasizes the humanity of people with disabili- Lori Goetz Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION
LReferred by: Name: Address: City/State/Zip:
Telephone: ( ) Fax: ( ) E-mail: Is the above your General Membership (individual) $88. Agency/business/university/ 0 work address 0 home address college/library/school $200. 0 other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant ( ) Administrator/Adult Services (for whom payment of full fee would present a ( ) Administrator/Education hardship) $45. ( ) Administrator/Other Family (group rate) $136. Lifetime Member $1000. ) Adult Service Provider/Staff Add $10 for postage costs for members in Canada ) Behavior Specialist and $25 for members outside the U.S. and Canada. ) Case Manager Funds must be submitted in U.S. dollars and ) Early Childhood Services checks must be drawn on a U.S. bank. Add a $20 ) Educator/Teacher processing fee if check is not drawn on a U.S. bank. ) Gov. Personnel (Federal, State, Local) If you would like to charge your membership, please fill in the necessary information: ) Interested Individual/Advocate/Friend () Mastercard () Visa () Discover ) Legal Services Provider Card Number ) Occupational/Physical Therapist ) Parent/Family Member Expiration Date ) Personal Assistant Signature ) Professional Public Policy Advocate ) Professor/Instructor (College/University)() I would like to arrange to spread my ) Psychologist payments out. Enclose 1/3 and you will receive 2 additional ) Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, ) Related Services Provider please provide the following information: ) Self-Advocate Department ) Social Worker College/University ) Speech/Language Pathologist Student I.D. Number ) Special Education Teacher/Support Anticipated year of completion Specialist ) Staff Development/Trainer ( ) Add $15 if you are applying for an individual ) Student (College/University) membership or $30 if you are applying for an or- ) Supported Employment/Day Personnelganizational membership and also want to become ) Other a member of your local chapter. Cn Moving? Please make check payable to: TASH Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 BEST COPY AVALABLT 23g tq:' I I. lis,V, 131,1f,:','S-Jaw,' rr., rr,i01',Y ,,^- rt ,,,, FROM THE EXECUTIVE DIRECTOR
TABLE OF CONTENTS hours. Edith, age fifteen, had died in February of this year while being re- FROM THE EXECUTIVE DIRECTOR PAGE 2 strained for not giving a family photo to A VIEW FROM A BOARD MEMBER PAGE 4 ANNUAL CONFERENCE staff. Earl, a nine year old little boy had REGISTRATION FORM PAGE 5 died in 1995 while being restrained COMMUNITY INCLUSION facedown for forty-five minutes by staff at & PERSONAL SAFETY PAGE 8 TWINS WIN SPECIAL EDUCATION his community residence in Michigan. CLOSE TO HOME PAGE 9 Jason, age twelve, had suffocated while MY EXPERIENCES WITH THE being restrained facedown with staff CRIMINAL JUSTICE SYSTEM PAGE 12 sitting on top of him at a place ironically COMMUNICATING WITH PEOPLE WHO HAVE COGNITIVE DISABILITIES PAGE 16 called "KidsPeace." In all, there were 143 ATTAINING HUMAN RIGHTS, CIVIL RIGHTS From the Executive Director names on the list. AND CRIMINAL JUSTICE FOR PEOPLE WITH There is an important story behind FETAL ALCOHOL SYNDROME PAGE 18 BY NAM WEISS INDIVIDUALS WITH SIGNIFICANT DISABILITIES this tragic list.In April of 1997, Robert WHO ARE VICTIMS OF CRIME PAGE 21 It was just a list - names, dates, Rollins, a twelve year old boy, died while THE DEATH PENALTY AND PEOPLE places, a few words about circumstances, being restrained at the Devereaux School WITH COGNITIVE DISABILITIES PAGE 25 PONDERING THE EXECUTION OF but I read it with tears streaming down in Connecticut. Less than a year later, in JOHNNY PAUL PENRY PAGE 28 my face. The spreadsheet I received from March, 1998, another Connecticut child, RESOURCES FOR FURTHER the newspaper reporter in Connecticut 11 year old Andrew McClain, was killed INFORMATION PAGE 31 couldn't have begun to convey the human under similar circumstances. Andrew suffering that had been caused to the died while being restrained face down at a victims and their families. TASH (formerly The Association for Per- Connecticut facility called Elmcrest. sons with Severe Handicaps) is an inter- Tristan, a sixteen year old boy had When the second child died in the space national advocacy association of people died of asphyxiation in March of this year of a year, Dave Altimari, a reporter for the with disabilities, their family members, while being held facedown on the floor Hartford Courant, began to wonder if two other advocates and people who work with a towel stuffed in his mouth. Sandra, kids dying this way within a year was a in the disability field. TASH actively pro- a forty-five year old woman had died in a fluke. He set out to find out how many motes the full inclusion and participation Utah facility in January, 1998, after being people die while being restrained in of persons with disabilities in all aspects left in restraints, unchecked, for ten Continued on page 3 of life. To receive an information packet, WA. contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 dz. or phone (410) 828-8274, ext. 108 or e-mail: [email protected]. .217 Whom Do I Contact?? Forissuesof policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at MISSION STATEMENT (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops, or technical assistance, fAsTASH call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, Building communities in which no one is Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] segregated and everyone belongs; For questions about membership, conference registration or exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on government affairs or fundraising/development, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Advocating for opportunities and rights; e-mail:[email protected] For information on marketing and promotions, permission and reprints, news- Eradicating injustices and inequities; letter submissions or advertising, or publication sales, call: Priscilla Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, Supporting research and disseminating e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Lori Goetz, Editor-in-Chief, at (415) 338-6230, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable.Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 2 4 U TASHNewsletter,September 1998 FROM THE EXECUTIVE DIRECTOR
Continued from page 2 investigation. Most staff are cleared of any wrong doing and return to their jobs facilities for people with disabilities working with people with disabilities. In nationwide. only a fraction of the cases were the staff Altimari assembled a team of report- people involved prosecuted. ers. Together they spent several months The lawyer's statement that "these are collecting information about people who - socially undesirable people" was a have died while being restrained in state common theme as well. One coroner, institutions and community facilities when pressed for a cause of death, said across the country. TASH played an active that he couldn't release that information role in this effort by putting out a call to - as the case was still under investigation. members and friends over the Internet. "I can tell you this, though" he said, "this TASH received sixty-five responses. Some was a problem kid." People with disabili- people sent newspaper articles, others ties are devalued in life and their deaths remembered situations but did not know are judged by some as being of less dates or names, others just wanted to be significance than the deaths of other. informed of the results of the study On Sunday morning, January 10, Where details were not provided, Altimari 1989, David, a thirty-nine year old man and his team went to work filling them in. who had severe mental retardation, Every case was verified. returned to his living area at Winfield The results of Altimari's study were State Hospital and Training Center. David horrifying. He and his team were able to asked that the TV be turned on. One of verify 143 instances since 1986 in which - the aides told David that residents were people with disabilities had died while not allowed to watch TV during the day being restrained. The investigative team and gave David a magazine. David from the Hartford Courant sent their data became upset. He threw the magazine to the Center for Risk Analysis of the and grabbed the aide's shirt. The aide Harvard School of Public Health for moved away. David slid from his chair to analysis. The Center concluded that his vision, rolled him in the mat, sat on the floor. A male aide told David "We deaths of this nature are severely under the folded end of the mat and kept the don't lay on the floor here." David reported. They found that New York State student there for more than ten minutes grabbed this aide's hair. The two aides had done the best job of record keeping. until he stopped kicking. A few minutes placed David in a "personal control" Based on the New York data, the after she unrolled the mat the teacher position. A third aide came to assist. The Harvard Center for Risk Analysis esti- realized that the student had not gotten male aide straddled David while one of mates that between 50 and 150 people die up and appeared limp. He died after being the other aides left to get the each year at the hands of staff while those transported to a local hospital. The "rollerboard". The male aide who was staff are restraining them, supposedly for teacher's attorney argued that lay people straddling David lifted his weight off of their own safety or the safety of those might consider her reaction to the him. David no longer struggled. The around them. That's 1 to 3 senseless student's behavior improper but that a aides noticed David's lips were turning deaths a week. Altimari and his staff classroom full of autistic students is "a looked only at deaths that occurred in different world." "These are socially facilities for people with developmental undesirable people," the attorney went on disabilities and similar facilities for people to argue, "sometimes what a teacher has with psychiatric diagnoses. This means to do may seem strange and distasteful to that these figures do not include people others." The judge dropped charges who have died while being restrained against the teacher and dismissed the in nursing homes, boarding homes, case, saying that he had no doubt that the prisons, or at the hands of police. teacher had caused the boy's death but Each story is a tragedy. At the that her actions were "between her and Fairview Developmental Center, in her conscience and not something for a Huntington Beach, California, a school- court of law." teacher killed a fourteen year old young What makes this story unusual is not man who had autism and mental retarda- that the teacher's actions went unpun- tion by rolling him inside an exercise mat ished, but that she was arrested at all. In in an effort to control his behavior. She the vast majority of instances, the staff was arrested. Testimony showed that she involved were not arrested; in many of the had put a diaper across his face to block cases there was not even a formal, internal Continued on page 27
PAGE 3 TASH Newsletter, September 1998
ld11 A VIEW FROM A BOARD MEMBER
No one had the money to hire me at the officials should talk to us.I will share a story The Role of Self- time. So I continued my volunteer self- with you about language. advocacy efforts while looking for a full time I attended a conference on the treat- Advocates in the position.It was about that same time that I ment of people with disabilities in the attended a national committee meeting and criminal justice system. While there, I was Justice System a friend of mine asked me if I had ever sitting down with some friends of mine,
BY LIZ OBERMAYER, TASH BOARD MEMBER heard of a man named Johnny Lee Wilson. including people at the UAP at Temple I told him I hadn't. My friend told me the (Pennsylvania), and we were talking about story of Johnny Lee Wilson, a man with a miranda rights.I asked, "what are they?" First I would like to tell everyone why I disability who had been falsely accused of a They told me that reading miranda rights to got involved in the self-advocacy movement. crime and jailed.I remember getting upset a person involves telling them that they have I always enjoyed politics. When I was and scared.I thought that if it could the right to have a lawyer.I said, "yes, I growing up, my family was always talking happen to Johnny Lee Wilson, why couldn't know what they are...they are my rights." about politics.I tried my best to keep up it happen to me? Johnny Lee has a disability But I had never heard the term "miranda with the discussion, but somehow I just like I do, so my disability could be the rights" before. Was that my fault?I say no, couldn't. This frustrated me because I still reason why the police would "pick me up." and it wouldn't be the police officer's fault really enjoy learning and talking about I may not have the exact same disabilities as either, because the term "miranda rights" is politics. Johnny Lee, but the police could look at the accepted terminology used by police When I heard about self-advocacy, I how I walk or talk and they might assume I officers and others in the law enforcement thought it was like politics.I say this field. We need to make sure that people because I think if people really want to am under the influence of drugs or alcohol. with disabilities are familiar with phrases make a difference then we need to talk to like that. people who can help make that happen. I Although I was learning a great deal think that for issues such as closing And it is important for us, about criminal justice issues, my advocacy on institutions or changing laws to become a behalf of people with disabilities still wasn't a reality, we as self-advocates need to deal as self-advocates to full time job.I had my heart set on a full with people like governors and congres- sometimes focus our efforts time job doing self-advocacy work and I sional representatives, and sometimes even on more than a single issue. knew that I could find one because some of the president. And it is important for us, as my friends had jobs doing this kind of work. self-advocates to sometimes focus our efforts Although the closing of Shortly thereafter, I was hired as the on more than a single issue. Although the institutions is of great Chair of an Administration on Developmen- closing of institutions is of great importance, tal Disabilities (ADD)-funded project called the role of self-advocates in the justice importance, the role of the National Advisory Group for Justice, system requires attention, too. self-advocates in the which is managed through PILCOP (Public When I lived and worked in New justice system requires Interest Law Center of Philadelphia).The Jersey, the politics of self-advocacy wasn't idea of writing this grant for ADD came apparent to me. I saw people making attention, too. from self-advocates. The purpose of the friends and having parties.I agree that a grant is to educate people on the issue of the part of self-advocacy should include having treatment of people with disabilities in the fun and interacting socially because that's I became interested in helping people criminal justice system. Most of the people part of life.It also has to include helping such as Johnny Lee Wilson get out of jail, so who work on this project are people with people make their own lives better and that's I volunteered on my days off to work on a disabilities. However, it makes me sad and the part of self-advocacy that wasn't criminal justice project.I believed in the angry to think that many self-advocates in apparent to me at the beginning. cause and was proud of my contribution to this country are not involved in this issue. It soon became clear to me that people this effort. In my opinion, Johnny Lee This has to be one of our concerns in New Jersey weren't interested in self- Wilson was in jail for no reason other than because people with disabilities are the ones advocacy the way I was, so I began to look the fact that he had a disability Johnny Lee who are put into jails for no reason other someplace else where I could make a was falsely accused of murdering an elderly than the fact that we have a disability It is difference. I continued working in a library woman. He signed the confession because true that some of us are jailed for crimes in New Jersey because I enjoyed the work, he didn't understand what he was signing. that we might have committed, but in those but at the same time I started to become This is true for a lot of people with disabili- instances do we get due process? In most involved on the national level with Self ties. Johnny Lee received a pardon from the cases, people with disabilities don't get due Advocates Becoming Empowered (SABE). In Governor of Missouri and he got out of the process because many people who work in 1991, at the Second National Self-Advocacy jail a couple of years ago. However, there the criminal justice system do not value us. Conference I was elected to represent my are still many people with disabilities falsely We have to take ownership of these region, which extends from West Virginia to accused and imprisoned in the criminal issues the criminal justice system as well Pennsylvania.I soon found myself with a justice system. as the closing of institutions. They both can lot of responsibilities including being the Another reason why people with disabili- and do affect us as people with disabilities. Vice President which I gladly accepted. ties should be involved in the criminal justice Who better to advocate on behalf of these In January of 1996, I asked my friends issue is because we, as people with disabili- issues than people with disabilities?I can't who were involved with SABE if they knew ties, know what kind of language is easy for think of anyone! where I could obtain a full time paid us to understand. We are, in a way, the ex- position working on self-advocacy issues. perts on how the police and law enforcement PAGE 4 242 TASH Newsletter, September 1998 CONFERENCE REGISTRATION FORM VVItUres 1998 TASH Conference Registration Form Creating Futures Together Seattle, December 2-5, 1998
Mail form to: TASH 29 W Susquehanna Avenue, Suite 210, Baltimore MD 21204-5201 Fax form to: 410-828-6706 Questions? Call 1-800-482-TASH
TASHConference '98 The registration form can also be found at our Web site at www.tash.org SRATTLII, WASNINGTO You may use this form to register for the conference, become a TASH Member, or both! Please Print First Name Last Name Preferred Badge Name Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country This address is: D home D work 0 school 0 other Billing address (if different from above) Agency/School/University Mailing Address City/State/Province Zip/Postal Code Country Daytime Telephone Work Telephone Fax e-mail This address is: U home U work LI school CI other
Please circle the appropriate numbers that describe your affiliation (not more than 3):
1. Administrator/Adult Services 12. Psychologist 2.Administrator/Education 13. Regular Education Teacher/Admin. 3.Administrator/Other 14. Related Services Provider 4.Adult Service Provider/Staff 15. Self-Advocate To Become a TASH Member or 5. Early Childhood Services 16. Social Worker Renew your Membership NOW... 6.Government Personnel 17. Speech/Language Pathologist You may also use this form to become a member at 7. Legal Services Provider 18. Special Ed. Teacher/Support Spec. the same time you register for the TASH conference! 8. OT/PT 19. Staff Development/Trainer This allows you to register for the conference at the 9.Parent/Family Member 20. Student reduced TASH member rate (see other side for mem- 10. Professional/Public Policy Advocate 21. Supported Employment/Day Personnel ber registration rates) or, use this form to join as a 11. Professor/Instructor (College/University) 22. Other member without registering for the conference. Please fill out this section only if you are registering for the conference: Membership rates are listed below. Determine the appropriate membership category, be sure to fill in TASH Membership: I am a current member 0 Individual 0 Agency the applicable rate on the reverse side of this form Membership# when entering payment information, and include If you are a student member, please list your Student ID# payment at the time you submit your conference reg- OI am becoming a member now (please be sure to enter the applicable cost on the istration payment. reverse side) General International Membership (individuals)$88.00 OI am renewing my membership now (please be sure to enter the applicable cost on the Agency/Business/University International reverse side) Membership $ 200.00 Optional Conference Information Requested (please request by October 16, 1998) Self-Advocate, Parent, Full-Time Student $45.00 O Accessibility Details Family International Membership (2 People) $136.00 Sign Language Interpreter Lifetime International Membership $1,000.00 ElChild Care/Youth Activities (Note: you must fill out an application in advance to register. Space is limited and there is a nominal fee.) (Add $10.00 to memberships in Canada and O Roommate Referral Program $25.00 to memberships outside of the U.S. and O List any accommodation needs Canada to cover additional postage costs.) Application for CEU credits have been made to the following organizations: Fill in appropriate membership rate on Line 8 on reverse side of this form. National Association of Social Workers, American Physical Therapy Association, The American Occupational Therapy Foundation, American Therapeutic Recreation Association and local education agencies. O I would like to request further information on CEU credits List Type 43 BEST COPY AVAILABLE PAGE TASH Newsletter, September 1998 CONFERENCE REGISTRATION FORM
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Curren Jii Registration Rates t or onng Please Enter 1998 Conference International Non-Member Member Applicable Cost General $199 $305
Student/Paraprofessional/Parent (Professional) $135 $229
Self Advocate/Parent (non-professional) $ 49 $ 79
One Day Only 0 Thurs 0 Fri LI Sat $ 99 $129
1. Cost of Conference Registration from above 1. 2. Subtract Discount if applicable. (Note: Only one discount can be applied.)
a. Subtract $20 per registration for groups of 5 or more registering for the full conference (all registrations must be mailed in the same envelope) 2a.
b. Subtract $50 per full conference registration for a regular education teacher registering witha special education teacher, a paraprofessional, or related services personnel; or for any support staff person registering witha self- advocate (must be mailed in the same envelope). Indicate name of person with whomyou are registering: 2b. 3. Add $40 late fee if you are registering after November 13th. After November 13th, all registrations will be on-site 3.
TOTAL Conference Registration Fee 4. TASH Techs: TASH Members $65 1" Choice TASH Tech # Non-Members $80 2"d Choice TASH Tech # Self-Advocate/Parent $40 Note: There is no charge for the Chapter LeadershipTASH Tech.
5. Add Cost of TASH Tech (full day pre-conference workshops; see descriptions, page 7) 5
6. Add $85 to attend the Special Pre-Conference Symposium on Dual Diagnosis 6
7. TOURS a. Add $42.00 for the Grapes & Hops Tour (contact TASH office for a description of tours) 7a. b. Add $28 for the Seattle City Tour (contact TASH office for a description of tours) 7b. 8. Add TASH Membership Dues if you are joining TASH International or renewing with this application (see rates on front page of this form) 8 9. Add $15 to also join your TASH Chapter (only applicable if you are joining or renewing membership for TASH International now) 9
10.Yes, I will add $5 to support a self-advocate to attend the conference 10. TOTAL Enclosed (Lines 4-10)
Payment Terms TASH Federal ID#:51-0160220 Registration will not be accepted without payment by check, official purchase order, or credit card authorization. Please note thatpayment must be in U.S. Funds only. A $25.00 processing fee will be deducted from cancellations received before November 6, 1998, and addedto purchase orders not paid within 30 days after the conference. No refunds will be given for cancellations after November 6, 1998. A $15.00 fee for returned checks or unauthorized charges will be assessed. Check enclosed Purchase Order/State Voucher No.
Visa Mastercard Discover Card Number Exp. Date
Signature
PAGE 6 TASH Newsletter, September 1998 1998 ANNUAL CONFERENCE vaures LOCATION Seattle Sheraton Hotel and Towers 1)\sAY (Headquarter Hotel) 1400 Sixth Avenue Seattle, Washington 98101 Phone: 206-621-9000
Rates: $123.00 Single$133.00 Double$20.00 Additional Person Room tax is an additional 15.6% per night Washington State Convention and Trade Center (Location of Exhibits and Conference Sessions) TASHConference '98 800 Convention Place (1 block from Sheraton) SEATTLE. WASHINGTON Seattle, WA 98101 206-727-2814 ALTERNATE HOTELS Tentative Conference Agenda Seattle Hilton Sixth and UniversitySeattle, Washington 98111 Tuesday, December 1, 1998 206-624-0500 8:00 PM - 10:00 PM Registration Open Rate $112.00 single/double, plus 15.6% tax $15.00 extra person Pre-Conference Activities 2 1/2 blocks from the Convention Center Wednesday, December 2, 1998 7:30 AM 8:45 AMTASH Tech Registration Seattle Crown Plaza 8:30 AM 4:30 PM Club TASH Day Care/Youth Activities 1113 6th Avenue Seattle, WA 98101-3048 9:00 AM 4:00 PM TASH Tech Workshops 206-464-1980 9:00 AM 4:00 PMTASH Chapter Development and Rate: $115.00 single/double , plus 15.6% tax Leadership Training 2 1/2- 3 blocks from Convention Center 2:00 PM -8:00 PM TASH Conference Registration 5:00 PM -7:00 PM Opening Reception in the AIRPORT TASH Exhibit Hall Seattle-Tacoma International Airport 16 miles south of Downtown Thursday, December 3, 1998 Average cost for taxi $30, shuttle $18.00, bus $7.50 7:30 AM 1:00 PMRegistration 7:30 AM 3:00 PMTASH Exhibit Hall Open AIR TRANSPORTATION 8:30 AM 5:45 PMClub TASH Day Care/Youth Activities Southwest Airlines will be the Official Airline for the 8:00 AM 3:15 PMConference Sessions and Poster 1998 TASH Conference Presentations Southwest is offering a 10% discount on 3:30 PM 5:30 PM Plenary Session most of its already low fares to and from the TASH December '98 Meeting. Call (or 5:30 PM -7:00 PM . No-Host Reception SOUTHWEST AIRUNES! have your professional travel agent call) the Southwest Airlines Group Meeting Desk at Friday, December 4, 1998 1-800-433-5368, Monday Friday 8:00 AM 5:00 PM, and Satur- 7:30 AM 11:00 AM Registration day, 9:30 AM 3:30 PM by no later than November 24, 1998 and 7:30 AM -3:00 PM TASH Exhibit Hall Open refer to I.D. Code K1748 to take advantage of this offer. Call right 8:30.AM 5:45 PM Club TASH Day Care/Youth Activities away as fares are subject to terms and availability 8:00 AM -3:15 PM Conference Sessions and Poster Presentations 3:30 PM 5:30 PM Plenary Session GROUND TRANSPORTATION 5:30 PM 7:00 PM TASH Reception Grayline of Seattle Airport Express (sponsored by WA-TASH Chapter) MayLine of Seattle A DIVISION OF HOLLAND AMERICA LINE-WESTOURS Saturday, December 5, 1998 Frequent, fast, convenient Airport Express Service operates be- tween Sea Tac Airport and the Seattle Sheraton and other down- 7:30 AM 9:00 AM Registration town hotels. Fares are $7.50 one way or $13.00 round trip. (TASH 7:30 AM 12:00 PM TASH Exhibit Hall Open attendees will receive $1.00 off). Please notify Gray Line at least 8:30 AM 1:00 PM Club TASH Day Care/Youth Activities 48 hours in advance if you require wheelchair access. For more 8:00 AM 12:45 PM Conference Sessions and Poster details call Gray Line Airport Express at 206-626-6088. Presentations BEST COPY AVAILABLE PAGE?45 TASH Newsletter, September 1998 ROLE OF COMMUNITY INCLUSION IN CRIME PREVENTION
Community Inclusion Personal Safety BY RICHARD SOBSEY
is rare and plagued by procedural for students with disabilities that is 114 Dick Sobsey is Director of the difficulties. Nevertheless, all of the JP Das Development Disabilities Centre, blocks from home. He could have spent University of Alberta, research that is available favors commu- 90 minutes commuting each day instead Edmonton, Alberta, Canada. nity living. of getting to know people in his own David is eight now. He attends a community. regular classroom in our neighborhood One other factor consistently has ur son, David, was born in school. We chose inclusive education been identified as having protective 1990 with a "severe" because of its educational and social powers. Attachment and natural and developmental disability.I advantages, but we believe it also keeps healthy human bonding helps inhibit had already been working him safer. Here is an example of why. violence. Most human beings experience with people with developmental disabili- Several years ago, I wrote a chapter on feelings of aggression toward others from ties as a professional since 1968, and I teaching people with developmental time to time. However, the vast majority had devoted my work to violence and disabilities personal safety. One of the of us learn to control those feelings and abuse prevention since 1086. I had things I suggested is creating opportuni- are reluctant to hurt others. learned a lot as a professional and asa ties for them to meet local police officers. Disinhibition is a term used to researcher, but I still had a lot to learn as So, when David was 6, I decided to describe how some people overcome that a parent. Here are some things that I practice what I preach and show him inhibition to act out their violent im- think that all parents of children with where the local police station was. Our pulses. Dehumanization and depersonal- disabilities should know about keeping city has adopted a community policing ization are terms used to by researchers their children safe. philosophy and there is a small station a studying violence to describe how Kids with disabilities are at greater few blocks from our house. We went in thinking of another person as less risk for abuse than other children. and I stumbled for words to explain why human, less like one of "us," allows Although studies differ on whether their we were there as the officer in charge aggression to come out. The primary risk is 2, 3 or even 4 times as high as the approached us. She smiled and greeted tools for depersonalization are labeling risk experienced by other kids, there is David by name. Even though the officer and distancing. Segregated schools remarkable consistency in the finding of in charge was a stranger to me, she was increase physical and social distance, elevated risk. This elevated risk, how- the mother of a child in David's school, constructing the world as "us and ever, is not the same for children of all and she knew him pretty well. It was them." In doing so, it permits violence ages. It is relatively small for very young coincidence, of course, but it is a coinci- toward "them." No one in this world is children but increases as they get older dence that was possible because commu- completely safe from violence, but and approach adulthood. Research also nity policing tries to ensure that officers building healthy families and inclusive provides good reason to believe that live and work in the same communities. communities minimizes the risk. the risk of abuse is much higher in Walking home from the police station, six special programs, residential facilities, more people greeted David by name. Dick Sobsey is the author of Violence and and institutions than in natural In the past three decades, there have Abuse in the Lives of People with families, neighborhood schools, and been hundreds of studies of risk for Disabilities. For further information, Dr community living alternatives. It is child abuse, and the most consistent Sobsey may be contacted at (403) 492- 3755 (phone); (403) 492-1318 (fax) or important to note that research compar- risk factor identified has been isolation via e-mail
BY ESMERALDA BARNES, JOURNAL STAFF WRITER Reprinted courtesy of The Journal, Fairfax, Virginia
jill Jacobs refused to give up the fight year of job training to complete her to convince Fairfax County to place degree requirements. But her parents her son with a disability in a pressured officials by going to the media neighborhood school with his and then school board members, who twin sister. ultimately allowed her to march with her Last Friday [August 7, 1998], Jacobs Chantilly High classmates and then take got her victory The school system the year of job training. reversed an earlier decision, ruling that Through persistent calls and letters, Jacobs' 5-year old son, Collin, may enroll Jacobs attracted the attention of national in kindergarten at nearby Fort Belvoir disability advocates and the pro bono Elementary instead of Bush Hill Elemen- help of a law firm and a public relations tary, in the Alexandria portion of Fairfax company. "I just kept calling people and County 14 miles from the Jacobs' Fort saying 'Please help me, please help me,' Belvoir home. until someone did," she said. "And I School system officials had insisted talked to adults with the same disability that a special program at Bush Hill would as Collin to make sure I was doing the be better equipped to serve Collin's Jacobs praised right thing.I had faith in my child and needs. Collin and his twin sister, Laura, in myself that I knew what was best for school administration have cerebral palsy, a central nervous him." system disorder that can cause speech for being "very progressive School officials would not discuss problems and mild to severe paralysis. Collin's case or the support he will be The family lost a battle last year to and moving the school offered at the school.However, Jacobs place Collin in preschool at his neighbor- said Collin will be in a general education system in a new direction, hood elementary school. But after more kindergarten class and receive extra than a year of phone calls, letter-writing where new ideas on how to assistance from physical and speech and meetings with advocacy groups and therapists and others trained in special school officials, the Jacobs family is educate special education education. celebrating Friday's victory with music, Jacobs praised school administration children are taken seriously." dance and McDonald's. for being "very progressive and moving Collin now will join Laura, who has the school system in a new direction, a milder form of cerebral palsy, and his where new ideas on how to educate oldest sister Sarah, 10, who will be a case much like the plight of other special education children are taken sixth-grader at the school. The newly disabled families in the countyillus- seriously" built school will open this September trates the power of persistence in fighting "I saw a major change in the whole and is two miles from the Jacobs' home. for [the rights of students with disabili- atmosphere here," she said. "We are on "We are so happy," said Jacobs. "This ties] to do everything from marching in the wave of this major shift in attitudes is a real victory for everyoneour family, graduation ceremonies to attending their countywide." our community and for families nation- neighborhood schools. But Alice Farling, who oversees wide. He'll ride the same bus with his For example, school officials in special education in the county, said the chums and his sisters," she said. Spring 1997 allowed a Chantilly High school system's action Friday was more Instead of traveling 45 minutes to School senior with disabilities to march "evolutionary than revolutionary" "We get to school, the ride is no more than with her general education classmates, evaluate each child's situation individu- five minutes, she said. Advocates for after initially refusing because they said ally, but we are trying to be more creative [people with disabilities] say the Jacobs' the girl had not completed the necessary Continued on page 10 2 4 " PAGE 9 TASH Newsletter, September 1998 SPECIAL EDUCATION
TWIN WINS SPECIAL 80 percent of those are in their neigh- EDUCATION CLOSE TO borhood schools. "But the law does not require us to offer every program and The Center for HOME service in a student's neighborhood Autism and Related Continued from page 9 school," she said. "But when we can, Disabilities and The and depending on the child's needs, we and offer better services to all of our are trying to offer students better Florida Outreach special education students," she said. services as close as possible to their Project for Individuals There are roughly 20,000 special education students in the county, and neighborhood schools, because we with Deaf Blindness know the value of children." are excited to announce The Sixth Annual Conference for UPDATE: People with
The new school year began in Fairfax County, Virginia a few days Autism, ago, just as it did in thousands of school districts around the country. Deaf-Blindness & We caught up with Jill and asked her tell us about Collin and his Related Challenges sisters' first impressions of the new school year. Building a Vision: "For me, Collin's first days of school have been wonderful. A New Perspectives & Possibilities few little glitches here and there, but absolutely nothing that we did not remedy by putting our heads together.I cannot explain the January 23 & 24, 1999 feelings I had on the first day and the couple of days leading up to it. Hilton Clearwater Beach Resort, Clearwater Beach, Florida Cliche, I know, but it was truly bittersweet. I can tell you that Iam grateful and joyous to be able to experience such typical mom-of- Topics to include Inclusion, kindergartners emotions. Communication, Social Skills As for Collin and his sisters, well.. .they are loving school, and Positive Behavioral loving riding the school bus together, loving life! Sarah was made a Support. National Keynote "bus monitor," an honor that 'fulfills a life-long dream' (her words!) Speakers for this event are for her, so she is psyched!!! Laura is a bit disappointed. She laments Michael Giangreco, Barry that the other kindergarten students just 'mill around' and are not at Prizant, Gary Sasso all concerned with books and pencils and paper. She says shecame and Ted Cart to school for an education, and she has no idea what her teacher is thinking by not teaching real stuff. Conference Registration Fees: Each morning as he heads for the bus, Collin's face looks as Pre-registration prior to January 1, though it might actually burst from his humongous grin. He adores 1999: $55.00; On-site $65.00 his teachers and the bus driver, who happens to look exactly like Santa Claus! His teachers, Miss Bourque and Mrs. Firer, are quite wonderful at getting Collin in with the other kids. On the first day, Make your hotel reservations early! while on the playground, Mrs. Firer whipped Collin out of his Call the Hilton at wheelchair and chucked him down the slide! BRAVO, teacher, 800/753-3954 refer to the CARD conference. BRAVO! Rates: Single - $99.00; Please extend our family's sincerest thanks to all of the TASHers, Double $115.00 advocates, families, friends, educators, and anyone else you know who lent a hand with this effort. There is no way to repay the favor but with our undying love and commitment to freedom for all children." For more information or to request registration materials, contact Donna Casella at 800/333-4530 As ever In freedom, (FL only) or 813/974-2532 Jill Jacobs (outside FL) or e-mail [email protected]
2 4'C3 PAGE 10 TASH Newsletter, September 1998 1998 ANNUAL CONFERENCE
All Printed Materials If you have questions on any of the Making Your Prepare text according to the follow- above requirements, please call Denise ing principles to maximize legibility (this Marshall at 410-828-8274, ext. 103 or Handout benefits everyone, in your presentation): send an e-mail to [email protected] Materials Make information clear and easy to FOR MORE INFORMATION... understand. The following organizations address Be conscious of the glare and aspects of communication accessibility. Accessible background of the paper that you are BY DENISE MARSHALL DIREGOR OF TRAINING AND using. Black lettering on yellow, off- ADA Communication Accommodations TECHNICAL ASSISTANCE white, or gray paper provides Project (ADA-CAP) American Foundation for the Blind Under Title III of the Americans with maximum legibility, with less glare Governmental Relations Department Disabilities Act (ADA), places of public ac- than plain white paper. 1615 M Street, NW, Suite 250 commodation are required to ensure that Leave right margins ragged; this Washington, DC 20036 people whose disabilities affect hearing, vi- leaves words evenly spaced, making Hotline on vision issues: sion, speech, or cognition are provided with text easier to read . (202) 223-0101 voice/TDD effective communication through auxiliary Use lower case letters with initial Hotline on hearing issues: (202) 651-5343 voice/TDD aids and services that enable them to fully capitals; this is more legible than all benefit from facilities, services, goods, and capitals. National Braille Press programs. Among many other venues, a Minimize the number of typefaces 88 St. Stephen Street conference that is open to the public falls used on a page. Boston, MA 02215 under this category Use simple layout design (617) 266-6160 voice In other words, communication must be equally effective for everyone! As such, Audio Tapes National Federation of the Blind we have asked presenters at the TASH Some people who are blind or Information Access Project 1800 Johnson Street Annual Conference to take the respon- visually impaired cannot or prefer not to Baltimore, MD 21230 sibility to provide any handout materi- read Braille or large print, and find tapes (410) 659-9314 voice als in alternative format. Participants at more useful. You can make the recordings the conference do not register for specific yourself or you may wish to have your American Foundation for the Blind workshops in advance, and may register material recorded professionally. 11 Penn Plaza , Suite 300 for the conference on-site, therefore it is New York, NY 10001 not possible to specify what types of Recording tips for doing it yourself: TDD: 212-502-7662, FAX-212-502-7777 http://www.afb.org alternate format will be requested. Because Label the tape in type and in Braille. computer disk is perhaps the easiest and On each side of the tape and on the Architectural and Transportation Barriers most versatile method, at a minimum all cassette label;, identify the side Compliance Board presenters are expected to have material number, the document title, and the 1331 F Street, NW, Suite 1000 available in this format. The following page range being read. 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The screen to be read by people with hearing following web site contains universal Large Print Materials disabilities. Closed captions are visible symbols for accessibility: Some people with visual disabilities only if the television is equipped with a Disability Access Symbols can read large print. Large print materials decoder; open captions are always visible. Graphic Artists Guild Foundation can be made at low cost using a photo- All Tapes to be shown at the conference 90 John Street, Suite 403, 8th Floor copier or a personal computer. Use a 16- should be captioned. If you are renting New York, NY 10038-3202 point type size or larger (18 is best). The video equipment through TASH, please 800-878-2753 type should be double-spaced and notify the TASH Central Office if closed http://www.gag.org/das/ printed on a high-contrast background. captioning will be used. I.%
PAGE?I4 TASH Newsletter, September 1998 ONE PERSON'S STORY
the bomb threat.I gave in to it because they kept saying they had a recording of my voice, and they said I could get up to My Experiences five years if I didn't accept the deal. The judge gave me credit for the time I had served, and I got out of Jamesville in three months because I didn't get into trouble there.I was on parole for another With The month. Since then, the police have given me warnings at different times when I got into arguments, but I've only been Criminal arrested one other time. That was two or three years ago.I had been depressed, so I took an overdose of insulin, which I take for my diabetes.I had injected 85 units; my usual dose is 21 units. After I Justice took it, I waited a while and took my blood sugar. It was way down, so I called 911 and told them what I had done. They called an ambulance and the police. The ambulance showed up first.I System was walking out the door with the
BY PERRY WHITTICO, WITH BONNIE SHOULTZ called me "nigger" in front of a bunch of ambulance crew to be taken to the white kids and I had argued with him hospital. The police showed up and said Iam a 47 year old, unmarried, about it.I told him, "I am not a nigger, they would take me to CPEP (Crisis brown-skinned American man who I'm an American, and you should be Psychiatric Emergency Program) instead, is involved in a number of commu- more respectful to people." He grabbed and I got angry and walked away down nity organizations, including self- me, and I punched him and I was the patio near my apartment building. A advocacy. I've been president of Self- expelled. He was seen as the victim in policeman ran after me and slipped on Advocates of Central New York for a the situation. the pavement. His partner put in an number of years. My disabilities include When I got to the School District "officer down" call and more police dyslexia and diabetes, and I've been office to get re-admitted, there were showed up, along with another ambu- involved in the mental health system several policemen there who said I had lance. They were crowding me too because of neurologically-based speech called in a bomb threat. They said they much, even though I was asking them to and language disabilities. I've also been had a recording of me making this call. give me about three feet of space so I involved in the developmental disabilities To this day, I don't know if they misun- could calm down. The situation got out system, spending several years in derstood my speech when I called, or of control and I ended up getting charged institutions. whether it was someone else who made with resisting arrest, menacing, and use I have also spent some time in jail the bomb threat. They took me in for of a weapon. and have had quite a few altercations questioning, which went on for a long In my opinion, the police didn't with the criminal justice system. Most time, but I didn't confess to making the understand my disability and my medical times the charges were suspended or bomb threat. They booked me and I conditions, and they caused even more dropped. Thirty years ago, I spent six stayed overnight. confusion and frustration than there months in jail for a crime I didn't do.I The next day I went to court and already was. They pepper-sprayed me didn't understand the charges or how to they gave me a lawyer.I stayed in the three times and punched me several times. fight them. I was very naive in the Public Safety Building (jail) for three Another officer cut his hand on the gravel system then. They charged me with months while I waited for my trial. Then when he was trying to punch me by aggravated harassment; they said I had my lawyer told me "We are going to trial. this time I was handcuffed behind my made a bomb threat over the telephone I think we have a deal that you can live back and down on my stomach and he to the Syracuse City School District's with if you agree with it. All you have to missed. The police caused most of the Department of Special Education. It was do is get sentenced to Jamesville (the problem because they didn't listen to the true that I had called the department that county prison) for a year, but you can get ambulance crew or me. day to set up an appointment with the out in three months if you follow the Finally, I was taken to the hospital psychologist to be re-admitted to school. rules and regulations." I didn't really because the police called a sergeant who I had been expelled for fighting but I understand much of what was going on, told them to give me an appearance ticket hadn't caused the fight. Another kid had or that I was pleading guilty to making Continued on page 13 PAGE 12 250TASH Newsletter, September 1998 ONE PERSON'S STORY
My Experiences With The . Even if a person with a disability Criminal Justice System commits a crime, they may not be treated Continued from page 12 "...The police are trained to fairly by the system. They can be taken deal with people who don't have advantage of in lots of ways. Their rights rather than taking me down to the Justice can be violated or taken from them Center. Then the ambulance took me to disabilities. ...When they meet without them knowing it, or they can be the hospital, with a police officer on board someone with a disability that pushed into more frustration and confu- with me. He kept talking to me, telling they think is breaking the law, sion, like I was, because the police don't me to calm down, but I couldn't. Because understand the person's needs. I have also of the insulin overdose, along with the they aren't equipped to seen a lot of people who have both other things I had been feeling before I adequately address the psychiatric and developmental disabilities took the insulin and the altercation with situation...they may treat the who have been mistreated in the system. the police, it was practically impossible for People with disabilities need tips on me to calm down. They took me to CPEP person as though they how to stay out of trouble.I have given and kept me there for three days. understand what is happening, some training on this subject at self- When I appeared in court, I was even if they really don't. ...lt advocacy conferences. I used a curricu- given a lawyer. The lawyer told me to lum called Right Rules that was devel- talk to my friends about what had comes down to a breakdown in oped by Back to Life, an organization in happened and to ask them to write letters communication that both parties Texas, and published by the National telling about my work in the community. have trouble recognizing..." Advisory Group for Justice, an Adminis- I got letters from the Center on Human tration for Developmental Disabilities- Policy, the Developmental Services Office, funded project operated by the Public Citizen Advocacy, my therapist, and my Interest Law Center of Philadelphia. case manager. I also went to the Univer- Since I can't read, I put up an overhead sity Hospital library and found an article ing, even if they really don't. If the and ask audience members to read each describing the effects of an insulin person doesn't speak in a manner the line. Then we discuss it. Here are a few overdose (confusion, argumentativeness, officer can understand, the officer has a of the tips: difficulty reasoning or evaluating the tendency to stop listening because he situation). My lawyer showed the judge thinks the person is speaking gibberish. Try to stay calm and be polite. the article and the letters. The district It comes down to a breakdown in Carry an identification card. attorney kept reminding the judge that communication that both parties have there were two officers injured in the trouble recognizing because they are too Tell the police "I need a lawyer" as incident, but the judge said that their busy fighting. soon as they ask you any questions injuries were their own fault. The first I have one friend (I won't say where besides your name and address. policeman shouldn't have been running he lives) who was convicted of murder Tell the police if you have special after me, and the other one cut his hand many years ago. He was convicted needs. after I was handcuffed. The judge because he did not understand his rights dismissed all of the charges. Since then I and he confessed to the crime without There is quite a bit more to this have "kept my nose clean," and I have understanding what he was doing. He curriculum and I think it works well.I stopped taking overdoses of insulin. did not commit this murder, but for some hope this article will keep someone from I would like to give my opinions reason (maybe because he is black) the being arrested or treated unfairly in the about disability and the criminal justice police and the district attorney were criminal justice system. system. The police are trained to deal convinced he had done it. He was in with people who don't have disabilities. prison for two years. A large group of They have very little training in anything people advocated for him and he got a Reference: that involves disabilities because they say, new trial. At the new trial, he was freed Back to Life (1997). Right Rules: A "We are not psychologists or doctors, we because they proved he was innocent. Training on our Constitutional are just here to make arrests or enforce He had to go back to an institution for a Rights. Philadelphia: Public the law" When they meet someone with long time afterwards because the police Interest Law Center of Philadel- a disability that they think is breaking the and the community he lived in still phia, 125 S. Ninth Street, Philadel- law, they aren't equipped to adequately thought he was guilty. Now he is a phia, PA 19107; (215) 627-2105. address the situation. They don't know leader in the self-advocacy movement, what to do with someone with a mental and I don't think he has ever been in disability. They might just try to get the trouble with the police since he got out Perry Whittico and Bonnie Shoultz can be person to go for an evaluation if they are reached at the Center on Human Policy at of the institution. This shows how 315-443-3851. upset, or they may treat the person as people with disabilities can be falsely though they understand what is happen- accused and convicted of illegal acts.
PAGE 13 251 TASH Newsletter, September 1998 SEPTEMBER 1998 INCLUSION WHAT WE KNOW...... HOW WE TEACH Linking Medicine aEducation
forithe Childrid for the Child with Special Needs
11111108,11 BRUCE A. BUEHLER, M.D.
Across America there is an ever increasing number of special needs children in our schools. Children whose medical conditions and instructional demands are closely linked. Whether it is medication, physical or occupational therapy, or prescribed behavioral interventions, these children present special healthcare needs which educators need to know in order to teach them well. Bruce Buehler, M.D., Chairman of the Department of Pediatrics and Director of the Munroe- Meyer Institute for Genetics and Rehabilitation at the University of Nebraska Medical Center, hosts a dynamic and highly informative presentation linking "what we know" in the field of medicine to "how we teach" special healthcare children in our nation's schools. Advances in neuroscience, diagnostic procedures, prescription medication and treatment approaches require administrators, teachers, school nurses and other related services staff to become knowledgeable about various medical conditions and their impact on learning. BRUCE A. BUEHLER, M.D. Dr. Buehler and other experts at the University of Nebraska Medical Center review: Neuroscience, Prenatal influences and prevention, Developmental disabilities, Medication and attention disorders and The team approach. Explore how schools have included children with special healthcare needs into their learning environments. Special syndromes such as Autism, Fragile X, Fetal Alcohol Syndrome (FAS), and Attention Deficit Hyperactivity Disorder (ADHD) are featured. This video is an excellent staff development tool not only for special educators, but for regular educators and school nurses serving children with special healthcare needs in inclusive settings. 1998, VHS, 34 minutes Order #VLME-TN9 Price: $99.95
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PAGE 14 TASH Newsletter, September 1998 SEPTEMBER 1998 STANDARDS tandards I Inclusion: Can we have both? DOROTHY KERZNER LIPSKY, PH.D. & ALAN GARTNER, PH.D. The move toward higher standards in our nation's schools has raised a major dilemma for educators committed to the inclusion of students with disabilities. How can these students truly succeed in a learning environment where academic standards and formalized testing are increasing? Dorothy Kerzner Lipsky and Alan Gartner, from the National Center on Educational Restructuring and Inclusion at the City University of New York, address many of the critical issues facing educators who are supporting students with disabilities in inclusive settings. DOROTHY ALAN GARTNER KERZN ER LIPSKY Through a dynamic and power- ful presentation Drs. Lipsky and Gartner discuss:
, The Consequences of Higher Standards The Seven Factors of Successful Inclusion I The Reauthorization of 1.D.E.A. The Restructuring of Our Schools Visit schools across the country and observe first-hand how the learning Can we needs of all students are being successfully met in general education environments. Learn how special education is a service not a location. have both? Understand that the inclusion of students is not determined solely by where they are placed, but by their full and complete access to the same curriculum as the general education population.
ay: Whether a regular or special educator, this video is a must for pre- I gSghtalf service and inservice training. ,N1la 1998, VHS, 40minutes Order#VSIN-TN9 Price:$99.00
COMPANION BOOK:Inclusion and School Reform: Transforming America's Classrooms Emphasizing the need for the concurrent development of inclusion and school restructuring, this book gives policy makers, administrators, school board members, teachers, and parents a solid understand- ing of the process of school reform, as well as a vision for the 21st century. M El 43 \ N11 m I RI RI I ( )RNI ABOUT THE AUTHORS:Dorothy Kerzner Lipsky is Director of the National Center on Educational Restructuring and Inclusion, and Alan Gartner is Dean for Research. Both are at The Graduate School and University Center, The City University of New York.
1997, 414pages, soft cover Order#INSR-TN9 Price:$36.95
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PAGE 152 Y6 TASH Newsletter, September1998 COMMUNICATION ACCOMMODATIONS Communicating with People Who Have COGNITIVE DISABILITIES IN THE CRIMINAL JUSTICE SYSTEM
BY MARY F. HAYDEN
As a result of Title II of the client to make restitution, an attorney if he or she understands what it says. If Americans with Disabilities still needs to assess whether the client the person responds in a affirmative Act, law enforcement and court needs a court-appointed advocate or manner, the response could mean that (a) personnel are faced with conservator to ensure that the client the person did read and understand the making reasonable accommodations to follows through with payments. information; (b) the person may not people with cognitive and other disabili- When communicating with persons know how to read and said "yes" to hide ties. Communication is the first area with cognitive disabilities about their an inability to read; or (c) the person may where professionals need to think about rights, the consequences of their behavior know how to read, but does not under- how they are accommodating an indi- and choices, and their options, the safest stand the information and said "yes" to vidual with cognitive disabilities. The approach is to involve an individual who avoid appearing "stupid." purpose of this article is to raise aware- is close to the person such as a friend, To ensure that persons with cognitive ness of certain factors that need to be family member, social worker or counse- disabilities understand what is said to considered in communicating with lor - to help interpret what is being said them verbally or in writing, and that an persons with cognitive disabilities within and ensure that the person understands affirmative response to any questions truly the context of the justice system, and to what is going on. It is important while reflects a "yes" on their part, it is best to offer a framework for further discussions doing this to continue talking to the involve a person who is in a close relation- and developing guidelines and proce- person with a disability directly, rather ship with the individual and knows the dures that ensure reasonable accommo- than talking about him or her with others individual well. Other options are to: dations at all levels of our legal system. as though the person were not present. involve a legal advocate with docu- Communicating Concretely Interpreting Agreement mented professional experience with People with cognitive disabilities People with cognitive disabilities people with cognitive disabilities; tend to think in concrete and literal frequently will agree with others even read rights or statements or ques- terms. As a result, they may not under- when it is not appropriate. This may tions one at a time, asking the person stand the meaning of words such as occur for several reasons. They may be to repeat what was said, and asking parole, probation, plea bargaining, intimidated by authority figures. They the person to explain the meaning of restitution, community service, and may have been told that the police are what was said before going on to the waiver of rights.It is also true that their friends and that they should trust next item; or although a person may understand a them; they may therefore want to please a use an alternative format to commu- word, he/she may not understand the police officer by saying what they believe nicate information to the person, consequences of the word. The concept the officer wants to hear, regardless of such as pictures. of restitution may be too abstract for an whether it is true or not. Some people individual with a cognitive disability. The with cognitive disabilities want to hide the Asking Questions person may understand and have a deep fact that they have limitations and that Sometimes individuals with cognitive desire to pay for damages he or she they do not understand everything; they disabilities require more time to process caused, but may not understand all that may agree with people because they know questions than they are allowed. At times restitution entails. most people will not ask them to elaborate questions may be too complex or For example, people with cognitive on a "yes" answer. As a consequence of a confusing, or may be worded in such a disabilities typically live at or below the tendency to agree with others, police way that they lead the person to an poverty level. They might not have the cannot assume that individuals with incorrect response because of differing money to make restitution even though cognitive disabilities understand their interpretations of the question. Complex they want to. Unless a defense attorney rights when read to them. questions should be broken down into is willing to sit down with a client and Additionally, law enforcement simple, concrete questions. If the person examine the client's personal budget to personnel and attorneys cannot place a does not immediately respond to a determine if restitution is possible, the piece of paper in front of a person with a question, they should be allowed 30 attorney cannot negotiate for restitution cognitive disability, ask the person to read seconds to answer, and then asked if the in good faith.If it is fiscally possible for a the information, and then ask the Continued on page 17 PAGE 16 TASH Newsletter, September 1998 COMMUNICATION ACCOMMODATIONS
Communicating with So, how about if you try to talk a little Other responses that may be People Who Have slower and take your time.I will try problematic include a response that is to listen harder."). irrelevant or inadequate. Options include Cognitive Disabilities rephrasing the question, using an Continued from page 16 If these strategies do not work, other alternative format such as pictures, or approaches must be used to understand bringing in someone close to the person question should be stated again. Some- the person's method of communicating. to help interpret what is being said. times persons with cognitive disabilities This may include having an advocate or may give responses that seem factually someone who knows the person well Responding to a Crime incorrect; this may be because they have present during questioning and proceed- interpreted words differently than Victim ings. An advocate or person close to the When a person with a cognitive intended. In these situations, the individual can help the person under- information can be verified with someone disability has been a victim of a crime, stand what is being asked and help others that person may behave in ways that are who knows the person well. interpret the answers. In using an Open-ended questions and yes-no mistakenly attributed to their disability advocate or other familiar person, They may be fearful, depressed, aggres- questions tend to be difficult for persons attorneys and law enforcement agents with cognitive disabilities. With yes-no sive, withdrawn, acting out, or self- should discuss the overall situation and destructive. The person may not have questions, they are more likely to answer questions with the advocate before "yes" regardless of whether it's the correct the language skills or vocabulary to questioning begins so that the person can report an incident or to be viewed as a answer. Either-or questions and mul- think about how to translate information tiple-choice questions with pictures may reliable witness. Concessions must be into concrete, understandable terms for made by law enforcement personnel, be more useful.It is important that the person with a cognitive disability investigators ask for the same information attorneys, and judges to understand the victim's method of communication. An in alternative ways to determine whether Staying Focused and Calm answers are consistent with each other advocate or someone close to the person Like everyone else, people with and what, if any, systematic biases are may be needed to help the victim cognitive disabilities may associate a operating. Where possible, answers understand what is being asked during question with a previous event that should be verified by independently the investigation. Articulation difficulties appears to be unrelated. In such in- obtained information (e.g., informants, may require a speech therapist or stances, it may be helpful to link the files or observations). someone close to the person to "inter- association with the question by respond- pret" the person's statement or testimony. Understanding Speech ing, "That's interesting. How does that Many adults with cognitive disabili- relate to (question content)?" Other ties have a high need to be accepted. If Sometimes people with cognitive possible responses include suggesting the perpetrator offered friendship or disabilities have articulation difficulties or that such topics be discussed at the end attention, it may have been hard to say limited language and, as a result, their of the interview, taking a break from the no. As a result, the victim may have speech may be difficult to understand. If interview and letting the person talk, and ended up in an exploitative or abusive a person is upset or nervous, his or her redirecting the person to the question. relationship that he/she perceived as speech may become even less under- Sometimes people become disruptive friendship. When talking to or question- standable. Sometimes talking with the or behave inappropriately because they ing the victim, the interviewer needs to person for awhile helps the listener are bored, scared, angry, sad, worried assess if this is the case. Under such become accustomed to hearing their about a loved one who has been hurt, or circumstance, the appropriate authorities speech pattern. It may also be helpful to reminded by the current situation of an should be notified. do the following: unpleasant past experience. If this occurs possible approaches include: Use simple clarification (e.g., "What? Reprinted with permission of IMPACT, a I didn't understand you"). Redirect the person back to the publication of the Institute on Community Re-ask the question (e.g., "Let me question in a firm and polite manner. Integration (UAP) and the Research and ask that again.I couldn't get your Training Center on Community Living, Smile, use words of encouragement, College of Education and Human answer."). It may be necessary to re- pay close attention to the person, Development, Univ. of Minnesota. The ask the question a number of times. and answer questions. author, Mary E Hayden, is Research This is preferable to jumping to an Ask if the person needs a break. Director of the Research and Training interpretation which may be wrong. Ask whether the person wants to an- Center on Residential Services and Try to calm and focus the individual Community Living. She may be reached swer the question or go on to the next. at 612-625-6046. (e.g., "I know you are really trying hard If the individual poses a physical to answer my questions.I know you danger to anyone, terminate the are trying hard to get me to understand interview and try again later. you. I really want to understand you. 255 PAGE 17 TASH Newsletter, September 1998 FETAL ALCOHOL SYNDROME
linking prenatal alcohol history with Attaining subtle CNS dysfunctions, particularly in the absence of clear physical and sensory disability, most children and adults with HUMAN RIGHTS, ARND probably go through life undiag- nosed. At this time, there are no biologi- cal markers for FAS or FAE, so the CIVIL RIGHTS,and determination lies in the skill of the clinician. Yet, this disorder is not uncom- mon. A recently published epidemiologic CRIMINAL JUSTICE study revealed that the prevalence of FAS and ARND was nearly 1 per 100. Growing up without benefit of a for People with diagnosis and without an obvious disability means that this group of people with disabilities has never had to fight for Fetal Alcohol Syndrome inclusion in society; they are considered to be already there (marginally). They BY ANN STREISSGUTH, PH.D. have never had to fight for "service brokerage"; they have often never had At a time in history when many services. They have never had to fight for people with disabilities are "individualized funding"; they have often Growing up without demanding their rights to be never had funding. Because they are fully participating members of benefit of a diagnosis and seldom identified, they are seldom their communities, there is another group without an obvious disability counted. When they are not counted, of people with disabilities who are they are not included in master plans. demanding to be identified. At a time means that this group of When they are not included in master when people with disabilities are trying people with disabilities has plans, their needs are not studied. desperately to rise above their disabilities never had to fight for Because they have not been studied, we and be recognized for their basic human- as a society do not know how to help inclusion in society; they are ity, people with Fetal Alcohol Syndrome them. (FAS), Fetal Alcohol Effects (FAE), and considered to be already This is probably what we have been other prenatal effects of alcohol are still there (marginally). doing for as long as pregnant women struggling to be understood for the have been drinking. We have been disabilities they do have. These disabili- treating their children as though their ties are seldom recognized, seldom disabilities didn't exist because they treated effectively, and seldom connected tion associated with prenatal alcohol weren't obvious. We've been expecting to service dollars. People with FAS/FAE exposure (also called Alcohol-Related that they would be able to function have a somewhat "hidden" disability Neurodevelopmental Disorders or ARND) normally if they just tried harder and not hidden from themselves, as they can cause learning deficiencies, attention applied themselves. experience their disabilities all too and memory difficulties, language, Finally, a large scale study of over acutely. Rather, their disabilities are developmental, and motor delays, and 400 people with FAS and FAE, who "hidden" from those who may perceive problems with organization, speed of ranged in age from 6 to 51 years, has them to be physically and sensorially information processing and response been carried out. This new study has intact, and thus fail to recognize their modulation. These CNS dysfunctions clear implications for the human rights, disabilities. impact social and behavioral interactions, civil rights, and criminal justice of people People with FAS and FAE have judgment, task persistence and eventually with FAS/FAE across the lifespan. This subtle birth defects of the brain. The employment and independent living as study reveals how people with FAS/FAE brain is the organ of the body most those affected reach adulthood. are inadvertently the treatment failures of vulnerable to the prenatal effects of As these problems can have other the very institutions set up to help alcohol. Children and adults can experi- causes, knowledge that the child had people. In part this happens because ence subtle brain dysfunction from significant alcohol exposure before birth, people with FAS/FAE are often not prenatal alcohol exposure even without or that the child's mother had an alcohol identified as having disabilities. It also the characteristic growth deficiency and problem, or was a regular or binge happens as a result of the pervasive belief facial and physical anomalies associated drinker around the time of pregnancy, is that they should benefit from the same with FAS in the prepubertal years. The essential in proper identification of this interventions as people with other central nervous system (CNS) dysfunc- disability. Due to the complexity of Continued on page 19 PAGE 18 25,5TASH Newsletter, September 1998 FETAL ALCOHOL SYNDROME
Fetal Alcohol Syndrome facilitate appropriate and effective Conttnued from page 18 interventions. Difficulty in understanding People with FAS and FAE consequences and in generalizing from disabilities that somehow interven- appear on both sides of the past experience are characteristics that put people with FAS/FAE at risk for tions should be generic. criminal justice system. The construct of "generic" program- trouble with the law. Appropriate pre- ming has doomed any efforts to-date to They are both victims of crimes sentence investigations involving other develop specialized vocational training and perpetrators of crimes. family members are especially useful for FAS/FAE detection. Alternate sentencing programs for this underserved population ...In both contexts, awareness of people with disabilities. Obviously, for remedial and therapeutic services, people who are blind need different of their brain dysfunction can active remedial interventions, and close programming from those who are deaf. facilitate appropriate and after-care supervision with specific attention to appropriate work, safe living, We know that because we know how to effective interventions. measure blindness and deafness. In fellowship, and leisure can interrupt a contrast, people with FAS/FAE are path toward hopelessness, despair, and seldom identified and no model plans recidivism. have been developed for their particular might ask not only what our communi- Many questions need answering, set of strengths and weaknesses. As a ties are doing to protect these children, such as why people with disabilities can, result, when they grow up they are often but also what we are doing to help their in some states, lose their DD (develop- given more independence than they can dysfunctional families. For example, mental disabilities) support while handle. They are drowning in indepen- alcohol treatment beds for women, incarcerated so that they have no appro- dence. Who will toss them a lifeline? advocacy programs for mothers at high- priate support after release. Such ques- Who will help them learn to swim? Who risk for alcohol and drug abuse, and free tions concern the human and civil rights will stave off the circling sharks? Who family planning are community solutions and criminal justice of people with will put them in their budget and help that help children by helping families. disabilities who have FAS/FAE. But they them manage their lives so that they, too, Preventing more children from being concern us all when people with unrec- can have the opportunity to become the born with alcohol-related birth defects ognized disabilities inadvertently and best that they can be, accomplish helps us all. repeatedly end up in the juvenile and meaningful work, contribute meaning- What about inclusion in the school criminal justice systems as a result of fully to society, and live in fellowship system? Is it really appropriate "inclu- inadequate supervision and support with others? sion" in society if you are suspended, services, as well as inappropriate expecta- Let's talk about inclusion and how it expelled, or drop out of school? Overall tions for fully independent behavior. relates to the human rights, civil rights, about 12% of children and 60% of Little pockets of hope are now and criminal justice of people who, adolescents with FAS/FAE that we had emerging around the country for address- through no fault of their own, are born studied experienced these major school ing parts of these complex problems. with subtle birth defects of the brain. disruptions. Both academic and behav- There are now some model programs ioral problems were cited as causes. In available to help communities and Are people with FAS and ARND effect, when this happens, the school and families organize for FAS/FAE prevention automatically included in therapeutic the parents are not working as a team and and intervention services. The Carlson day care programs? No, only 10% of the child and the community suffer the Administration of Minnesota and the those we studied had been. consequences. Not being in school Minnesota State Legislature man- Did they attend Headstart or other increases an adolescent's risk of getting in dated almost $7 million new dollars over preschools? No, only 28% had. trouble with the law, as were 60% of the 2 years for a massive prevention/interven- Did they not meet criteria for early or adolescents and adults with FAS/FAE that tion plan to include: remedial programming because their we studied. Alcohol and drug problems delays in development weren't (experienced by 30% of our adolescents a public awareness campaign; obvious? Or because their families and 45% of our adults with FAS/FAE) are research on the prevalence and did not enroll them? Or because they also risk factors for experiencing trouble incidence of FAS/FAE; did not have functional families? with the law statewide expansion of maternal/ People with FAS and FAE appear on child substance abuse projects; We don't know the answers to these both sides of the criminal justice system. intervention and advocacy for at-risk questions. We do know that people with They are both victims of crimes and chemically dependent women; FAS and ARND have at least one parent perpetrators of crimes. Their crimes are a statewide network of regional their mother who abused alcohol; often unintentional or unduly influenced diagnostic clinics for FAS/FAE; and that 72% were either physically or by companions. In both contexts, Juvenile Justice Centers to provide sexually abused; and 80% were not raised awareness of their diagnosis and under- 24-hour centralized receiving, primarily by their biological parents. We standing of their brain dysfunction can Continued on page 20 57 PAGE192 TASH Newsletter, September 1998 FETAL ALCOHOL SYNDROME
Fetal Alcohol Syndrome bringing about greater awareness and understanding of FAS/ Continued from page 19 FAE. And after all, understanding is the engine that powers change. processing, and intervention facilities for children accused of community delinquency acts, status offenses, or who are alleged to have been victims of abuse or neglect. FAS/FAE Ann Streissguth, Ph.D. is a Professor at the University will be systematically screened for, evaluated, and taken into of Washington School of Medicine, Department of Psychia- consideration in the intervention process. try and Behavioral Sciences, and Director of the Fetal Alcohol and Drug Unit, a research unit dedicated to the In Washington State, the legislature has funded the prevention, intervention and treatment of Fetal Alcohol infrastructure for a network of FAS diagnostic and prevention Syndrome (FAS) and fetal alcohol effects (FAE). For further clinics that are community based, and provided $1.5 million information regarding FAS/FAE or the work of the Fetal dollars for the biennium for two model programs to work with Alcohol and Drug Unit, visit their website at http:// the highest-risk women in the two largest communities. These weber. u. washington.edul--fadu/ or phone 206-543-7155. women are at risk for abusing alcohol and/or drugs during The information found in this article is described in pregnancy, have delivered a baby after receiving little or no further detail in two recently published books: Fetal Alcohol prenatal care, and are not effectively served by other commu- Syndrome: A Guide for Families and Communities by Ann nity agencies. This award-winning model program (originally Streissguth, Paul H. Brookes Publishing Co. (phone: 1-800- called Birth to 3: the Seattle Advocacy Model for Paraprofes- 638-3775); and The Challenge of Fetal Alcohol Syndrome: sional Intervention, more recently termed P-CAP (Parent-Child Overcoming Secondary Disabilities edited by Ann Assistance Program)), significantly impacts 5 domains: mater- Streissguth and Jonathan Kanter, University of Washington nal alcohol and drug treatment; abstinence from alcohol and Press (phone: 1-800-441-4115). The research described here drugs; effective family planning, child well-being; and connec- was funded by the Centers for Disease Control, Grant tion to services. Washington State also has an exceptionally number R04/CCR008515. strong family support network, the FAS Family Resource Institute, which not only supports families but also advocates for prevention and intervention, and educates the community about FAS/FAE. Parent advocacy has been a powerful force for
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PAGE 20 2 5 TASH Newsletter, September 1998 VICTIMS OF CRIME
Individuals with Significant Disabilities WhoareVictims of Crime
JAMES K. MCAFEE, THE PENNSYLVANIA STATE UNIVERSITY
Certainly, our social and legal (a)personal characteristics - people with systems do not adequately disabilities often exhibit cognitive, address the needs of victims of physical and social attributes that crime. For persons with The failure to make them easier targets for crime; disabilities, the systems are even less develop responses (b) living environments - persons with adequate and for persons with significant disabilities more often live in low disabilities, existing systems, concepts, to the needs of victims income/high crime areas; and training and recognition are inadequate with significant (c)extended dependency most individu- almost to the point of nonexistence. The als with significant disabilities continue failure to develop responses to the needs disabilities is a to be dependent on caregivers well into of victims with significant disabilities is a reflection of a greater adulthood. A significant portion of reflection of a greater failure to recognize crimes against people with disabilities that people with disabilities are dispro- failure to recognize is perpetrated by persons who are in a portionately victimized and that the that people with caregiver situation. consequences of victimization are complicated almost beyond understand- disabilities are Crime accounts are filled with cases ing for persons with significant disabili- disproportionately involving people with significant disabili- ties. In some cases, complications arise ties who are repeatedly victimized because because of lack of knowledge; in others victimized. of their vulnerabilities. One of the most the problem is simple neglect. infamous cases involved a young woman The inadequacies of responses to who was repeatedly raped by a caregiver victimization of people with significant in a private facility. The young woman disabilities fall into three general areas: was deaf, blind, nonverbal and had protection, prosecution and treatment. victimization of people with disabilities. mental retardation. Thus, she could not Protection refers to those activities that For example, an analysis of news accounts identify her attacker. She did not under- enhance or diminish an individual's of crimes revealed that the media more stand the nature of the attack, although ability to avoid being victimized. Pros- often uses the term "abuse" for a crime she surely felt the pain. In short, she was ecution encompasses activities designed involving assault when the victim has a an easy and safe target for the attacker. to seek retributional justice. Treatment is disability. Similarly, the media applies the A third element of protection is the the process of assisting the individual term "sexual abuse" to crimes ranging lack of self-protection education and with the physical, economic and psycho- from indecent exposure to rape when the training programs for people with logical trauma resulting from victimiza- victim has a disability (McAfee, 1998). disabilities. This omission has been tion. Each of these three general areas In one case, a victim who had clearly documented for nearly 20 years includes many specific activities. Follow- significant mental retardation had been by Balkin (1981), Luckasson (1992) and ing is an overview of the primary repeatedly raped, penetrated with a Sobsey (1994). Self-protection education problems in each area, illustrations from broom handle and eventually impreg- for people with cognitive disabilities is criminal cases, and some suggestions for nated. In newspaper accounts, she was especially difficult because improving practice.' referred to as a victim of sexual abuse not as a rape victim. These euphemisms 1) the concepts of victimization (e.g. PROTECTION result in reduced protection because they "bad touching") are often abstract; If individuals with disabilities can moderate the outrage that the public and protect themselves from crime, prosecu- law enforcement should feel about such 2)people with disabilities may have tion and treatment will be unnecessary. crimes. People with disabilities are learned to depend on others for pro- Unfortunately, many forces work against devalued because the crimes against them tection and self-protection requires a development of adequate protection. First are devalued. Adequate protective reversal of a long term process; is the media, which often trivializes services are less likely to be developed. Further examples of similar devaluation 3)curricula for self protection training are well-documented by Sobsey (1994). are not amailable, or they are Map- 'Illustrations are derived from actual criminal cases in which a person with a disability was The second problem.of protection is proPnae for people with disabilities; victimized. Although criminal records are the disproportionate rates of victimiza- generally public information, the names in tion of people with disabilities. This these illustrations have been changed to protect privacy. phenomenon is the result of Continued on page 22
PAGE22 ,5 5 TASH Newsletter, September 1998 VICTIMS OF CRIME
Individuals with During the three years of the Significant Disabilities program, several participants have been intended victims of real crimes. In all but Who are Victims of Crime one case, the intended victim successfully Continued from page 21 I avoided the crime by applying the behaviors learned in the simulations. 4)adequate and effective self-protection
instruction for people with disabili- 5 PROSECUTION ties requires concrete (so-called Clearly, protection is the most "hands on") experiences as training important element of victimization episodes; it is difficult to plan efforts. Prosecution efforts can be divided training around issues such as credit into at least 16 subtopics. A brief descrip- card fraud, assault, and property tion of each follows. theft that is realistic enough to be ( generalized; and 1. Self-recognition of victimization. Does I the individual recognize that he/she 5)it is rare to encounter professionals has been victimized? who are knowledgeable about both victimization and disabilities who 2.Awareness of caregivers. Do caregivers can design effective programs. recognize that the individual has been victimized? What can be done to enhance protec- )0- Educate persons with disabili- tion? Several specific actions could go a long ties, their families and their 3.Reporting of crime. Can the individual way toward improving the situation. caregivers.This education must be with a disability or caregivers report specifically designed for the indi- the crime? Do they know how to Education of the media. vidual. Conceptual and global preserve evidence? Do they know Victimization of people with disabili- curricula directed at avoiding how to contact police? ties must be portrayed as serious victimization are not likely to be crimes with the same disturbing and translated into behaviors that reduce 4. Police awareness, knowledge and specific language used for crimes risk in the individual's specific attitudes. Do the police officers against people without disabilities. circumstance. One such program is receiving the report have enough Media personnel should be called to being evaluated in Central Pennsylva- awareness of disabilities that they can account when they use terms that nia (McAfee, 1996). take a meaningful report? Are the gloss over or sanitize the crime. police willing to accept the report? Letters to the editor are often Adolescents and young adults with Are the police willing to listen to the powerful agents of change. mild to significant mental retardation individual's story? who are undergoing transition to )0- Analyze the specific environ- independence and semi-indepen- 5. Police skill in interviewing persons with ment of people with disabili- dence are enrolled in safety training disabilities. Do the police have ties to identify risk factors. in which dangerous activities, events enough knowledge of interviewing Among the questions that individu- and locations are identified. Students people with disabilities so that they als with disabilities, family members participate in simulations in which can obtain accurate information? Do and professionals must ask are: they are the targets of crime. They they know how to avoid tainting -Is the neighborhood a high crime are taught specific locations and statements made by people with area? persons to avoid. In order to disabilities that may be easily led? Is there an alternative living site? measure and promote generalization Are there specific risks in the area and with their concurrence, during 6.Investigation. Are the law enforce- (i.e. unlighted parking areas, drug the course of the transition activities ment authorities interested in trade)? (at work, during recreation, and at pursuing the case? Do they think it is - Does the route to work present home), they are targeted for a crime winnable? Do they understand and any special risks? by a person unknown to them. can they ameliorate the impact of the Do any of the individual's activities Crimes range from telephone credit disability on the investigation? Are (work, recreation, etc.) present card fraud to solicitation for sex. they committed to the investigation? additional risks? For example, Their responses are recorded and does the individual carry money or they are later informed that the 7 . Prosecutors' awareness, training and at- valuable goods? incident was staged. If their response titudes. Is the District Attorney (DA) was inappropriate, reteaching occurs. Continued on page 23 PAGE 22 269TASH Newsletter, September 1998 VICTIMS OF CRIME
Individuals with ing to provide some latitude in the trial which the victim is an individual with a Significant Disabilities to accommodate the disability? significant cognitive disability took place Who are Victims of Crime and continues to unfold in Pennsylvania. 14. The composition of and charge to the A 21-year old woman with down Continued from page 22 jury. What is the nature of the jury? syndrome (Nikki) was raped by a 21-year knowledgeable, skillful and willing to Are they likely to be accepting of the old neighbor in May of 1994. It was not prosecute? Is the DA willing to learn victim with a disability? Has the until September of 1994 that the incident about the impact of the disability? judge provided any special instruc- was reported to police. The long delay tions related to the disability? illustrates some of the problems of 8. Prosecutors' skills in interviewing and reporting encountered by individuals questioning. Does the DA have the 15. The skills of expert witnesses. Are there with disabilities and their caregivers. At skills to obtain information from the expert witnesses? What are their the time of the incident, Nikki did not victim that will be useful in court? qualifications? Can they assist in the know how to report the events to her Does the DA have the skills to prosecution? Are there experts for family. Infrequently over the next months, question the victim on the stand in a the defense who will testify about the she told her parents, "The boy bothered such a way as to bring out the victim's disability? me." Her parents assumed that this was a information in a manner meaningful continuation of occasional taunts she had to the jury? Does the DA know how 16. Appeal. Does the victim, the family endured and counseled her to ignore him to prepare the victim for cross- and the prosecutorial team have the because he was ignorant. examination? strength to undergo the almost Nikki's reactions to the assault grew inevitable appeal? increasingly severe and parents, friends 9. The defense attorney's shills and and neighbors began to notice significant knowledge. What does the defense It is not practical to address each of changes in her behavior. She was no attorney know about the disability these elements extensively here. Therefore, longer outgoing. She no longer rode her and its impact on the victim? Has the illustrative cases, incidents and practices bicycle proudly around the neighborhood defense employed expert witnesses will be presented to highlight the most and she began to relate details of the to undermine the competency of the important issues. Individuals seeking more assault to others, although in a disjointed victim to testify? information should obtain a copy of a and confusing manner. Nikki related manuscript in progress, which will be significant details to a neighbor who 10. Special statutes. Are there special stat- submitted for publication in 1999. reported them to the parents and then to utes designed to protect people with An incident that illustrates much of the police. Fortunately, the officers disabilities that might impinge upon the difficulty in prosecuting a case in assigned to the case took the time to prosecution? For example, many states learn about Nikki's disabilities, her have statutes criminalizing sexual re- communication style and her history. lations with a person who has mental One of the officers assigned to the case is retardation. How does such a statute Euphemisms the parent of a child with a disability His affect a prosecution in which both the understanding and dedication were plaintiff and defendant have mental re- put forth by the media invaluable to the prosecution. tardation? to describe assaults when At this point Nikki and her family through a series of fortuitous circum- 11. Legal constraints/supports for testimony the victim has a disability stances, had overcome the first five of people with disabilities. Are there result in reduced protection elements of the prosecutorial system. statutory limitations on the testimony Nikki had made a successful (but delayed of the victim with a disability (i.e., because they moderate the report); her family understood the report; competency to testify laws)? Are there outrage that the public and the police actively pursued the case; and at accommodations for testimony that are least one officer was knowledgeable statutorily provided (e.g., interpreters)? law enfOrcement should enough to continue the investigation and feel about such crimes. obtain consistent information through 12. Courtroom conditions. Does the interviews. The Assistant District Attorney courtroom present any barriers to the People with disabilities are assigned to the case had no knowledge of victim? devalued because the down syndrome or mental retardation. However, she immediately sought the 13. The judge's knowledge, attitudes and . crimes against-them assistance of an expert who provided her skills. Is the judge knowledgeable, skill- .are devalued. with reading material and direct instruc- ful and willing to prosecute? Is the tion about down syndrome, mental judge willing to learn about the im- retardation, communication with people pact of the disability? Is the judge will- Continued on page 24 PAGE 23 261 TASH Newsletter, September 1998 VICTIMS OF CRIME
Individuals with sexual intercourse with her during her Significant Disabilities stay in the residence. Because she is Who are Victims of Crime unable to give testimony and because no other physical evidence exists, the police Continued from page 23 and the prosecutor are unwilling to pursue the case. The parent cannot even I with mental retardation, and the likely secure an attorney to file a civil suit impact of Nikki's disabilities on the investi- because they view the case as gation. This relationship lasted throughout unwinnable. In fact, they can't even the investigation and prosecution. identify who should be the defendant. Nikki's case had now proceeded through the first eight elements of prosecu- TREATMENT tion. The law enforcement authorities be- The final major aspect of inquiry rela- gan to believe the case was winnable. The tive to victims with disabilities is treatment. district attorney was more than willing to ( When an individual with a disability is the learn about the impact of the disability and victim of a violent or intrusive crime, the how to prepare for the courtroom, and the aftermath is even more complicated, frus- DA had a consistent source of guidance trating and damaging than when the vic- from an disability expert. tim does not have a disability There are a The defense attorney did not take the number of reasons for this. time to learn about Nikki's disability and its impact on her testimony Instead, he 1. Individuals with cognitive disabilities attempted to portray her as incompetent tactics of the defense and prosecution. may have difficulty understanding to testify merely on the basis of her Initially, the jury was disinterested. the crime, the potential impact and mental retardation. Two competency However, as the trial proceeded, they their own responses. hearings resulted in a ruling that Nikki were obviously struck by Nikki's emo- was competent to testify, although the tions and her testimony Nikki gave 2. Individuals with disabilities who judge stated that his decision to find appropriate testimony, the judge re- have been in dependent situations Nikki competent was a very close call. spected her and attempted to accommo- are not likely to have developed the Thus, Nikki had overcome three more date her needs and the jury listened. In coping strategies that others in more elements of the prosecutorial system. The the end, Nikki's assailant was convicted independent situations have. They defense attorney apparently underesti- and sentenced. Two years later, he won a are more likely to look to others mated her ability Nikki was found to be new trial on appeal. His appeal was to "fix the damage." competent and no special statutes that predicated on the assertion that the judge would limit her rights were applicable. had afforded Nikki and the prosecution 3.For individuals with significant Finally Nikki's day in court arrived. too much leeway The case is pending. disabilities, especially those who are Again the defense attorney underesti- Nikki's case illustrates how the nonverbal, naive professionals and mated her testimony, which was often prosecutorial system can work for a caregivers are likely to assume that disjointed when she was confronted with person with disabilities. It also illustrates because the individuals cannot unfamiliar terminology or abstract or the complexity and the occasions for express their feelings, fears and compound questions. When left to relate mistakes. At each point, a less caring and trauma, they don't experience the the incident in her own words, Nikki was poorly prepared team would have same depth of trauma as others. able to describe the factual details of the faltered. It is perhaps most important to rape in sequence. When questioned, she note that Nikki's case was the first 4.Traditional kinds of victims' assis- often faltered. The judge permitted some successful prosecution of its kind in the tance are likely to be ineffective. latitude in questioning, and the expert large metropolitan area in which it "Talk" therapy is especially inappro- witness who had worked on the case was occurred. Similar cases are now being priate for individuals who have questioned at length about Nikki's mode pursued with increased vigor. However, limited verbal proficiency of communication, the apparent contra- other cases languish because the tools for dictions in her testimony and his prosecution do not exist. 5.There are few victims' assistance pro- evaluation of Nikki's ability to testify A case involving a young woman fessionals who are experienced with or truthfully and factually The DA used all who is nonverbal and who has profound who have developed appropriate in- of the knowledge she had acquired and mental retardation illustrates the limits of terventions for persons with disabili- deftly handled Nikki's difficulties. The prosecution. In this case, the woman was ties. This is especially true where the judge occasionally intervened to gain an apparently sexually assaulted at a disability affects communication. understanding of Nikki's testimony that community residential program. Medical would not be tainted by the partisan evidence indicates that someone had Continued on page 30 PAGE 24 2 6 2 TASHNewsletter,September 1998 THE DEATH PENALTY AND PEOPLE WITH COGNITIVE DISABILITIES
f the thirty-eight states that exemption legislation must be given authorize the ultimate retroactive application, the Georgia Court punishment for offenses that Sboub reasoned that the enactment of the are classified by law as prohibition showed that the people of capital, twelve now prohibit the imposi- Georgia regarded the execution of tion of the death penalty on persons with theDeath persons with mental retardation to be cognitive disabilities: Arkansas, Colorado, cruel and unusual punishment. The Georgia, Indiana, Kansas, Kentucky, Court said that the prohibition against Maryland, Nebraska, New Mexico, New PenaftN the execution of these individuals would York, Tennessee and Washington. apply, therefore, no matter when the Although the federal government imposes person was sentenced to death and that a the death penalty for certain offenses, the App[Nto retroactive application was necessary to Congress has passed two laws that ensure a just application of the law specifically prohibit the execution of Nebraska, the most recent state to persons with mental retardation: the Persons adopt the exemption legislation, has Omnibus Drug Initiative Act (1988) and with statutory language clearly indicating that the Federal Death Penalty Act (1994). its law will be given retroactive effect. In The adoption by twelve states and fact, Nebraska's bill, LB 1266, affects the federal government of legislation that Cognitive inmates currently on death row as well as exempts the death penalty for persons individuals convicted of first degree with mental retardation is an appropriate murder after the bill becomes law. affirmation that defendants with mental Disahitities: Nebraska's legislation was implemented retardation should not be considered only with a concerted effort of concerned sufficiently culpable to be executed for a lawmakers. Some Nebraska legislators criminal act that carries the ultimate Te States felt that a retroactive application of.the penalty. In 1989, Georgia became the exemption laws would result in addi- first state in the Union to exempt persons tional delays in death penalty cases. The with mental retardation from the death must Decik legislation's proponents had the task of penalty. The Georgia legislation specifi- persuading various state officials that cally mandates that if the defendant is Nebraska law did not contain sufficient found to be guilty but have mental safeguards to prevent people with mental retardation, the death penalty shall not be BY BARBARA E. RANSOM, ESQ. retardation from being unfairly executed imposed; instead, the court shall sentence AND DAWN SUTTON, ESQ. since the State's Attorney General National Advisory Group for Justice the defendant to life imprisonment. represented that no person with mental The enactment of such legislation retardation had ever been executed in the generally raises issues regarding the state. Currently, Nebraska state law retroactivity of any legislation prohibiting prohibits the execution of someone the execution of persons with mental 4. eighteen years of age or younger, as well retardation. The Georgia statute con- . as someone with mental retardation. The tained express language limiting the The adoption by twelve states state senators appear to make these applicability of the exemption to cases distinctions because they have concluded commencing after the legislation's and the federal government of that the mental capacity of these indi- enactment. Nonetheless, litigation legislation that exempts the viduals makes it difficult for them to immediately arose challenging the death penalty for persons with know the right or wrong of their actions. retroactivity of the statute (Fleming v. mental retardation is an These statutes are a rejection of Zant). appropriate affirmation that Penry v. Lynaugh, a decision in which the The defendant in Fleming argued defendants with mental Supreme Court refused to categorically that his sentence of death more than ten retardation should not be prohibit the imposition of the death years prior to the enactment of Georgia's penalty for offenders with mental considered sufficiently culpable exemption legislation violated the Eighth retardation. In 1986 Johnny Paul Penry Amendment's guarantee against cruel and to be executed for a criminal act was convicted of the brutal rape and unusual punishment. He alleged that that carries the ultimate penalty. murder of a woman in Livingston, Texas. newly discovered evidence demonstrating In 1989, Georgia became the Despite a myriad of pre-trial expert that he had mental retardation at the time first state in the Union to exempt testimony that the twenty-two-year-old of the crime must be considered to persons with mental retardation "Penry had the mental age of a six and determine if his death sentence should be from the death penalty. one-half-year-old and had been diag- overturned. In concluding that the Oip Tua Continued on page 26
PAGE 25 2S TASH Newsletter, September 1998 THE DEATH PENALTY AND PEOPLE WITH COGNITIVE DISABILITIES
Should the Death Penalty Apply + + + mental retardation who may also be a to Persons with Cognitive victim. Mental retardation, with its Disabilities: The States Must Mental retardation, with its concomitant limitations in cognitive Decide concomitant limitations in function and adaptive behavior, must be Continued from page 25 cognitive function and adaptive recognized as a characteristic that sets an behavior, must be recognized as accused with a developmental disability nosed with organic brain damage," the a characteristic that sets an apart from other death-eligible accused State of Texas insisted that he was compe- accused with a developmental persons. The enactment of similar tent to stand trial. The jury rejected the exemption legislation in other states will disability apart from other insanity defense based on Penry's mental define the societal consensus against capacity, found him guilty of capital death-eligible accused persons. executing persons who do not have the murder and sentenced him to death. cognitive ability to understand the Penry appealed his sentence to the + + + consequences of their actions. Such a U.S. Supreme Court, arguing that the jury response by the states may inspire the was never allowed to consider the countries. The jury again sentenced him Supreme Court to revisit its decision in mitigating evidence of his disability during to death. In 1995, the Court of Criminal Penry.This standard of decency that the sentencing phase of trial, and that the Appeals of Texas affirmed the decision of prohibits the ultimate punishment for imposition of the death penalty in his case the lower court that "assessed punish- persons with disabilities as cruel and would be cruel and unusual punishment. ment by death". Mr. Penry's execution unusual, therefore, has been left to the A majority of the Supreme Court held that has been stayed since May 13, 1998 as he determination of the twenty-six states the prohibition against cruel and unusual awaits further instruction on his execu- that continue to allow for their execution. punishment embodied in the Eighth tion from Texas officials. (For additional Amendment does not apply to the details on the Penry case, see the article Barbara E. Ransom and Dawn Sutton are execution of capital offenders with mental beginning on page 28.) Attorneys with the Public Interest Law retardation. The high court reasoned that In capital punishment cases, courts Center of Philadelphia. They may be reached at 215-627-7100. must not focus exclusively on the victim 1. mental retardation is a blurry concept and on the heinousness of the crime to which serves as an inappropriate basis the detriment of the defendant with for establishing a sweeping death pen- alty prohibition; and Linking 2. no societal consensus existed which Functional would justify exempting an entire class of individuals from the state's Assessment execution power. to the The high court's decision went Instructional against the well-established and long- held moral precept of Anglo-American Process jurisprudence. Common law prohibits Guide the execution of persons without the mental capacity to commit a capital crime Functional Assessment Guide knowingly Ironically Penry quite possibly would have escaped the death This guide provides: penalty had he been savvy enough to A detailed process for conducting functional have pleaded temporary insanity With assessment the decision from the Supreme Court, the Forms and supplementary materials to support case was sent back to the lower court for this process reconsideration of the death penalty Methods for organizing and reporting functional phase by a jury that would take the assessment informationportfolios and mitigating factors of his disability into narrative comprehensive reports (a sample consideration in determining whether or report is included) not to sentence Penry to death. Unfortu- LIZCON15ULTING nately, Johnny Lee Penry's trial was in P.O. Box 6049-747Katy, TX 77491-6049 Texas, the state that has executed more (281) 395-4978Fax (713) 973-1271 people than any other state and more http//wwwirconsulting.com people than are executed in most
PAGE 26 2 6/:,ITASH Newsletter, September 1998 FROM THE EXECUTIVE DIRECTOR
From the Executive Director that make up the data base of deaths Conunued from page 3 assembled by the Hartford Courant team. But within the lines of information on the blue and his face was pale. An ambu- spreadsheet, there are hints at the true lance was called. storya person killed because he refused David was pronounced dead upon to go to the library, another because he arrival at the emergency room. The was running across a play yard, one after diagnosis on David's hospital admission he was denied access to the bathroom, form and death certificate read, "seizure another because she wouldn't go to her respiratory arrest followed by cardiac day program. arrest." The institution's Risk Manage- When will we realize that when you ment Committee found that "any - deny an individual basic respect and allegation of physical abuse/neglect is freedoms, he or she is given little choice unconfirmed." but to rebel? When will we learn to This story would have ended here if interpret such rebellion as an adaptive David's parents hadn't been courageous response toward an inhumane environ- enough to ask questions and pursue legal ment? When will we figure out that claims on David's behalf. The story dangerous or disruptive behavior can be would have gone untold if Amy McCart, reduced by making people's lives better a Masters of Science student at the than community settings. In the past, by enhancing, rather than sacrificing self- University Kansas hadn't chosen to tell when someone would speak to me of the esteem, relationships with others, and David's story as her masters thesis. Ms. dangers of living in the community I human dignity? McCart's paper tells the story of a loving, would have said, "We know how to keep TASH applauds Dave Altimari, Eric close knit family; of a boy, who grew into people safeif it is our goal to make sure Weiss, the other Hartford Courant a man who loved to sing and go to no one gets into a stranger's car, has reporters that worked on this story, and church, was interested in trains and unprotected sex or is swindled out of the paper's management, for the intensive sewing machines and had strong, money we could keep people in institu- effort that was required to tell the whole enduring relationships with friends and tions. The problem is, it's not a life story. The series in the Hartford Courant family.It also tells the story of a long anyone would choose for him/herself or gives voice to the unheard protest of history of injuries, starting soon after for a loved one." The work of the team of those individuals who are no longer here David moved to Winfield State Hospital. reporters from the Hartford Courant has to fight on their own behalf. Between 1983 and 1989, David caused me to rethink my position and The full series of Hartford Courant sustained 389 documented injuries. must cause us to intensify our efforts to articles, and all of the data regarding These included a broken hand, injuries to close every last institution door. Not only deaths while being restrained is available both elbows that required surgery, a are people's lives made empty by virtue of on the Hartford Courant's web site: fractured arm, and a spiral fracture of his being institutionalized, their very
PAGE 27 265 TASH Newsletter, September 1998 JOHNNY PAUL PENRY PONDERING THE EXECUTION OF JOHNNY PAUL PENRY
BY ROBERT PERSKE
By the time TASH members read this newsletter, Penry will probably be dead.
johnny Paul Penry was scheduled to ten years beatings, scaldings, and football player who was honored as the die in the Huntsville, Texas death worse. According to testimony, his Most Valuable Player of the National chamber on May 13, 1998, but he left arm was broken several times. Football League. received a temporary stay of Almost every inch of his skin was On June 26, 1989, the U.S. Supreme execution. Even so, most Texans burnt with cigarettes. He was locked Court handed down two sharply divided look at this interruption as if it were in his room for such long periods decisions. It voted 5 to 4 that persons with merely a "speed bump" which the state's they became fouled with his body retardation could be executed, but it also legal machine must pass over. Most who wastes. As punishment for such voted 5 to 4 that mitigating factors caused are "in the know" believe that Penry will incontinence, the mother sometimes by retardation must also be considered. be killed very soon. made him eat his own feces and During the last of two trials, Johnny's By the time TASH members read this drink his urine. numerous IQ tests were paraded before newsletter, Penry will probably be dead. juries. Most of the scores ranged between It will take place approximately five Johnny's public school career was IQ 43 to 63. One isolated performance minutes after midnight. (If, by some short-lived and most of his growing IQ did reach 74 leading a prosecution stroke of luck, he is still alive when this years took place in a number of psychiatrist to tell the jury that this score
piece is being read ...well, a letter to the Texas institutions and diagnostic was Johnny's "personal best" and all of governor of Texas might be in order, clinics. At age 23, he was discharged the others were faked. How this testi- voicing an opinion to spare the man's to the Livingston community to mony and others like it finally overpow- lifeor to get on with the killing.) But an aimless and lonely freedom with ered the defense needs close scrutiny by what does such a demeaning exclusion no after care or support. those of us who care about what happens from society mean to TASH members to such defendants. who fight so courageously for the Did Johnny do the crime? He did. But the mixed agony in that courtroom inclusion of all people with disabilities? Two months after his discharge, he needs to be considered, too. For example, The Penry case provides TASH mem- became attracted to a young woman I'll never forget the pain on the faces of the bers with a rich opportunity to ponder and he met for only a few minutes. A family of Pamela Carpenter as they sat decide what to do about such situations. week later, around 9:30 on the through every trial session. The crime was Here are a few of the salient facts: morning of October 19, 1979, he wrong. Pamela never should have been rode his bicycle to her house. He assaulted and killed the way she was. On May 5, 1956, Johnny was born struck up a conversation at her door. On the other hand, I will never into a world that was incredibly She saw him as strange. She tried to forget Johnny's short attention span and unkind. He was illegitimate. His slam the door on him. He forced lack of focus. Once when the prosecutor breech birth was difficult. His 18- himself into the house. She stabbed shouted that he was a "vicious psycho- year old mother lost so much blood him in the back with her scissors. path," Johnny was more interested in a that transfusions were ordered, but He beat her viciously. He stabbed person having a coughing fit in the her husband (not Johnny's father) her with the scissors. Then he rode audience. I'll never forget how witnesses ruled them out because of his his bicycle home. testified about Johnny's misjudgments religious faith. The mother barely always trying to do right things that survived, suffered a breakdown and The hunger for revenge against turned out wrong. I'll never forget how went directly to a mental hospital. Johnny skyrocketed because the victim, during court recesses, he turned, faced Pamela Moseley Carpenter, came from a the audience and smiled. Then he Ten months later, the mother prominent, well-loved Livingston family looked for one person just one person returned home and launched a series It also didn't help that her brother, Mark who would smile back. of attacks on her son that lasted for Moseley, was a Washington Redskin Continued on page 29 PAGE 28 266TASH Newsletter, September 1998 SEPTEMBER 1998
-0-14W-es (P. PONDERING THE EXECUTION OF The 1998 TASH ConferenceQjl a&,r- accot0 JOHNNY PAUL PENRY Continued from page 28 Criminal Justice Strand 0 The focus of the strand will be on two distinct areas: Looking for a Personal or Class Pursuit? Criminal Justice and Persons with TASH Conference '9 8 For starters, get your hands on a copy of The Disabilities as Victims of the System SAT1 WAIN. Criminal Justice System and Mental Retardation by Educators, providers, police officers, and persons with disabilities and Conley, Luckasson and Bouthilet (Baltimore: Brookes advocates will explore Issues of hate crimes, sexual abuse and the victim- ization of children with disabilities. Publishing Co., 1992). Read pages 246-278. Hereyou Persons with Disabilities Accused of A Crime will find the Amicus Curiae brief filed in the U.S. Presenters will discuss the impact of the criminal justice system onper- Supreme Court case in Penry v. Lynaugh (1989). This sons with disabilities who are suspected and/or accused of a crime. brief was written by James Ellis and Ruth Luckassonon THURSDAY, 9:15 AM-10:15 AM behalf of TASH and ten other national organizations. DECEMBER 03, 1998 The Role for Self-Advocates in Ensur- For a journalistic overview of Penry's life and trials, 8:00 AM-9:00 AM ing Reasonable Accommodation in the Due Process Rights for Persons Criminal Justice Syst. find a copy of Unequal Justice? By Perske (Nashville: with Cognitive and Communica- Liz Obermayer Abingdon Press, 1991). Read pages 63-81. Then let tion Disabilities 9:15 AM-11:30 AM this initial information take you where it will. Dohn Hoyle, Marsha Katz Understanding Violence in the Lives Assisting People with DD Who are of People w/DD: Reducing the Risks Victims of Crime Richard Sobsey Robert Pershe is an author and prison worker He can be reached at 203-655-4135. James McAfee 10:30 -11:30 AM 9:15 AM-10:15 AM What You Can Do Learning to Work with Law Jeri Houchins Enforcement Correspondence and/or comments to Texas State officials regarding the 11:45-12:45 PM Dianne Wolfe, Dolores Norley execution ofJohnny Paul Penry may be sent to: Children and Youth with The DD Offenders Program: An Al- Disabilities as Victims of Crime Governor George W Bush, Jr ternative Sentencing Program Patricia Sullivan PO. Box 12428, Austin, TX 78711 Suzanne Lustig 11:45 -2:00 PM Phone: 1-800-252-9600, Fax: 1-512-463-1849 10:30 -11:30 AM Fetal Alcohol Syndrome in Trouble Law Enforcement Training on De- with the Law Texas Board of Pardons and Paroles velopmental Disabilities Ann Streissguth, Barbara Wybrecht PO. Box 13401, Austin, TX 78711 Forrest Fulton 1:00 PM-2:00 PM 1-512-406-5408, 1-512-406-5810 Defendants with Retardation: Interviewing Techniques that are Dilemma for Criminal Justice Successful in Obtaining Information Personnel from Persons with DD Dolores Norley Mary Hayden 11:45-12:45 PM 2:15 PM-3:15 PM Victim Assistance to Crime Victims Right Rules Students FIRST: with Disabilities Tom Verhler, Rob Wybrecht Debbie O'Neill A Self-Advocate's Story: One Parents as Partners 11:45 -2:00 PM Man's Story of Confessing to a The ADA and Reasonable Crime He Did Not Commit in the Special Education Accommodations for Persons w/ Russell Daniels Process Disabilities in the Criminal Justice Syst SATURDAY, A Training Module for Proactively' Frank Laski, James McAfee, Michael DECEMBER 5, 1998 Sullivan 8:00 AM-9:00 AM Building Knowledge, Understanding 1:00 PM-2:00 PM From the Cradle to the Grave and Trust to Develop a Strong Resources for People with Jeri Houchins Disabilities Who are Sexually The Police Interrogation Room Family-School Partnership Abused Robert A. Pershe Leigh Ann Reynolds 9:15 AM-10:15 AM Topics include: 2:15 PM-3:15 PM Issues in Assessment, The Death Special Education Terminology and Process Providers & the Justice System: Penalty & Mental Retardation Acting in Your Client's/Student's Best William Edwards, Jennifer Johnston, IEP Data Collection and Reporting Interest Denis Keyes, Caroline Everington Continuum of Special Education Services Jane Dalen 9:15 AM-11:30 AM Transition and Future Planning Resources for Victims with Advocates and Allies Disabilities Diane Bryen, Lisa Sonneborn, Procedural Safeguards Beverly Frantz Sharon Potter, Ray Gagne Communication Strategies 10:30 -11:30 AM FRIDAY, Children and Youth with DECEMBER 4, 1998 Disabilities as Perpetrators L2CONJOutriko (0)K 8:00 AM-9:00 AM Patricia Sullivan P.O. Box 6049-747 Safety and Your Rights 11:45 -12:45 PM Katy, TX 77491-6049 Cherie Tessier, Dale Cohn, Connie The Criminal Justice System as a Rutherford, Michael Raymond, Level of Intervention for Students (281) 395-4978 Fax (713) 973-1271 Diana Robishaw with Disabilities The 5 Phases of the Criminal Justice Barbara Ransom http//www.Irconsulting.com System: From Initial Appearance thm Fetal Alcohol Syndrome Cradle to the the Correctional Sys Grave: What it is and Why it Hurtiv Suzanne Lustig Ann Streissguth
BEST COPY AVAOLABLE PAGE 29 7ASH Newsletter, September 1998 VICTIMS OF CRIME
Individuals with Nikki was taught how to make emergency ties. Our understanding is still meager, Significant Disabilities calls to the police. Each of these actions has but promising practices are apparent in helped to restore her security. disparate and isolated pockets of activity. Who are Victims of Crime In another case in which a young Consolidation, publication and cross- Continued from page 24 man with significant disabilities was fertilization are desperately needed to What can professionals, advocates assaulted, he underwent systematic move the promising practices into and individuals with disabilities do to desensitization to the crime scene and systematic efforts. improve treatment services for victims people with similar physical characteris- To contact the author for additional with disabilities? First, we must begin to tics to the criminal. He learned to avoid information about this article or the in- systematically examine the impact of the appearance of vulnerability, which publication report cited above, write: Dr. criminal victimization on people with eventually resulted in his ability to return James McAfee, Penn State University,. disabilities. This can be accomplished to travelling back and forth to work on Department of Educational and School through liaison activities with police public transportation near the place Psychology and Special Education, 211 departments and victims' assistance where the crime occurred. Cedar University Park, PA 16802; 814- programs. Case studies, compilation of 863-8115 (phone); 814 863-1002 (fax); statistics and systematic analysis of the CONCLUSIONS or JQM@ psu.edu (e-mail). impact of violent and intrusive crime are The vulnerability of people with especially critical. Second, we must disabilities to become victims of crime is James McAfee is Associate Professor and examine the strategies that appear to have clear. It has been clear for centuries as Professor in ChargeofSpecial Education at the Pennsylvania State University. Dr been successful. These strategies include young woman with mental retardation McAfee has taught adolescents with both those that are individual (i.e., where were traded and exploited as prostitutes behavior disorders and mental a person with a disability has made a and individuals with disabilities have retardation.His primary areasof successful recovery from the impact of been defrauded out of inheritances and interest and research are special education victimization) and systemic (i.e. where a trust funds. However, it has only been in law, transition, and criminal justice and . individuals with disabilities. victims' assistance program has adapted the past 20 years that we have seen to the needs of persons with disabilities). evidence of systematic and legitimate Third, we must advocate for inclu- efforts to understand the extent and sion in victims' assistance efforts. This impact of crime on people with disabili- ft+ advocacy can have both a moral and legal (ADA) basis. Fourth, we must cross train. You've got a choice... Advocates and professionals in the disabilities field must learn about victims' assistance. Victims' assistance providers itMelding Module must learn about disabilities and the for facilitating staff development impact of disabilities on victimization. Finally, we must take what we do know about assisting individuals with disabili- Melding Guide ties who have experienced trauma and for seicdevelopmentco apply it to victims' assistance. Two cases illustrate some of the ways Skill Development that people with disabilities who have Products for Partner Teachers been victimized can be assisted in their Supervising Paraeducators Who Support recovery In Nikki's case, her recovery was Students with Special Needs marked by concrete events that were Processes and Tools to: designed to restore a sense of safety. Nikki facilitate negotiation of roles and was present when her assailant was responsibilities foster initial and on-going communication handcuffed and sentenced. This concrete promote collaborative problem solving event was the first that Nikki was able to That result in: understand that he would not harm her a positive working relationship between partner teacher again because he was being removed from and instructional paraprofessional her environment. Next, the officer who best possible services and supports for students with special needs conducted the investigation regularly visited Nikki at her home and at her job. LP-CONSULTING His presence provided concrete evidence P.O. Box 6049-747Katy, TX 77491-6049 of protection. Later, Nikki was given a (281) 395-4978 Fax (713) 973-1271 photo of the officer in uniform to place in httpllwww.lrconsulting.com her bedroom as a reminder of his presence.
PAGE 30 2 6 8 TASH Newsletter, September1T98 SEPTEMBER 1998 Resources for Further Information (Excerpted list reprinted with permission of Impact, published by the Institute on Community Integration (UAP) and the Research & Training Center on Community Living, College of Education and Human Development, University of Minnesota,1997.)
The following resources may be of legal, civil, and human rights of Into the Jury Box: A Disabil- use to readers seeking more informa- African Americans and African ity Accommodation Guide for tion about persons with developmen- Americans with mental disabilities State Courts (1994). This publica- tal disabilities and the justice system. and their families." Services include tion offers practical suggestions on Please contact the distributors for its Justice System Program that how to modify each phase of the information about costs and order- assists individuals involved in the jury process to increase accessibility ing. This list was compiled with the criminal or juvenile justice systems. for persons with disabilities. assistance of The Arc of the U.S. For further information contact Available fromCommission on Access to Justice National Resource PERSPECTIVE Advocacy, P.O. Mental and Physical Disability Law, List. Box 50518, Minneapolis, Minnesota 1800 M Street, N.W., Washington, 55404, 612/305-6916. DC 20036, 202/331-2240. The International Coalition on Abuse and Disability (ICAD). The Arc of the U.S. The Arc The Criminal Justice and ICAD maintains a Web site and an has a variety of materials and Human Service Systems: A associated listserve that helps to link activities related to people with Coordination Handbook (1994). people concerned about issues of disabilities in the criminal justice This publication provides informa- abuse and victimization of persons system. Its Web site (http://TheArc. tion for people working in the with disabilities. The Web site org/ada/crim.html) includes its human service and criminal justice address is: http://www.quasar. Access to Justice National Resource systems when both systems are ualberta.ca/ddc/ICAD/icad.html. List, as well as online versions of involved in the life of a person with The Arc's criminal justice materials. a developmental disability. Avail- Community Services Reporter Also online is a chart describing the able from the South Dakota Univer- (July 1997). This issue includes 31 individuals with mental retarda- sity Affiliated Program, 414 East articles profiling programs and tion who have been executed in the Clark Street, Vermillion, South approaches for offenders with U.S. since 1976. The chart address Dakota 57069-2390, 800/658-3080. disabilities from around the country, is: http://TheArc.org/depts/dpchart. including the new mentoring html. For additional information on A Passion for Justice (1995). program offered to parolees with materials and activities, contact This videotape features author and mental disabilities in Texas. Pub- Leigh Ann Reynolds at 800/433- advocate Robert Perske. Inspired by lished monthly by the National 5255. his book Unequal Justice, the Association of State Directors of videotape reveals injustices people Developmental Disabilities Services, Defendants, Victims, and with developmental disabilities often Inc. (NASDDDS). For subscription Witnesses with Mental Retarda- encounter when falsely accused of and other information contact tion: An Instructional Guide for committing crimes. Available from NASDDDS, 703/683-4202. Judges and Judicial Educators Hilltop Productions, 24 Park Place, (1995). This training curriculum for Suite 24D, Hartford, CT 06106, 203/ Draft Report of the Victims of judges includes practical sugges- 951-3557. Crime Committee: A Criminal tions on accommodating persons Justice Task Force for Persons with with mental retardation during Contacts with People Who Developmental Disabilities (1997). courtroom proceedings. Topics Have Mental Retardation: This report contains 69 major include identifying persons with Training Key #353 (in press). This initiatives and reforms necessary to mental retardation, facilitating training package developed by the the provision of more equal protec- courtroom communication, court- International Association of Chiefs tion under the law for people with room accommodations, and court of Police and updated by The Arc is developmental disabilities. Avail- referral for community services. designed for use in training police able from Arc California, 120 I The manual also lists referral officers how to interact with persons Street, 2nd Floor, Sacramento, CA agencies for each state. Available with mental retardation. Available 95814, 916/552-6619. from National Judicial College, from The Arc of the U.S., P.O. Box University of Nevada, Reno, Nevada 1047, Arlington, Texas 76004, 817/ PERSPECTIVE Advocacy. 89557, 800/255-8343. 261-6003. An advocacy and support organiza- tion whose mission is "To ensure 2 69 PAGE 31 TASH Newsletter, September 1998 a TASH NEWSLETTER IY(.5 uj 0 0 0 Prise Ila Newton, Editor LL F.-V, Policy Statement Executive Board 0 C)a iE ilt CI": it is TASH's mission to eliminate physical and social ob- Liz Healey, President a_ Mark Partin, Vice President stacles that prevent equity, diversity and quality of life i '-' 85 °:2 for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee c) =D ?., a- Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary z n titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy Barbara Buswell All contributors and advertisers are asked to abide Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION
Referred by: Name: Address: City/State/Zip: Telephone: ( Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ El work address 0 home address college/library/school $200. (allows 3 conference attendees at CIother the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant () Administrator/Adult Services (for whom payment of full fee would present a hardship) $45. () Administrator/Education Family (group rate) $136. () Administrator/Other Lifetime Member $1000. () Adult Service Provider/Staff Add $10 for postage costs for members in Canada () Behavior Specialist and $25 for members outside the U.S. and Canada. () Case Manager Funds must be submitted in U.S. dollars and () Early Childhood Services checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank. () Educator/Teacher If you would like to charge your membership, () Gov. Personnel (Federal, State, Local) please fill in the necessary information: () Interested Individual/Advocate/Friend () Mastercard () Visa () Discover ( ) Legal Services Provider Card Number () Occupational/Physical Therapist Expiration Date () Parent/Family Member ( ) Personal Assistant Signature ( ) Professional Public Policy Advocate () I would like to arrange to spread my () Professor/Instructor (College/University) payments out. () Psychologist Enclose 1/3 and you will receive 2 additional () Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, () Related Services Provider please provide the following information: () Self-Advocate Department () Social Worker College/University () Speech/Language Pathologist Student I.D. Number () Special Education Teacher/Support Anticipated year of completion Specialist ) Staff Development/Trainer () Add $15 if you are applying for an individual () Student (College/University) membership or $30 if you are applying for an or- ganizational membership and also want to become () Supported Employment/Day Personnel a member of your local chapter. () Other Please make check payable to: TASH Moving? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 270 ou 1
1.rga-niz-in 2. uci-vo.ote To form into a coherent Defend or maintain a unit or functioning whole cause or proposal thn --1111118c A relationship between two groups that exists when all members of the first group are also members of the second
4. lan-guage 3. ki-bel-ing The suggestion by objects, To describe or designate actions or conditions of with a label associated ideas or feelings AND INAPPROPRIATE
Media Advocacy GFassrootsOrgamzing and Speakm
kg COPY MAILABLE OCTOBER 1998
TABLE OF CONTENTS More than 55,000 Oigan &Tissue From the Executive Director Page 3 Americans DONATION TASH Annual Conference Page 4 are waiting for organ Executive Board Election ResultsPage 5 transplants. Grassroots Organizing Page 6 One organ Media Advocacy and and tissue Empowerment Page 8 donor can save and Equality Page 12 improve the Effects of Labeling Page 13 lives of up to People First Language Use Page 14 50 people!
Center on Human Policy: Internet To be an Resources Page 18 organ and Escaping from the Label Trap Page 22 tissue Changing the News About donor, even Disability Page 25 if you've put your wishes Share Your Life. Speaking Out Against in writing, Aversives Page 28 you must tell SIGN YOUR DONOR CARD. your family Share Your Decision:II members TELL YOUR FAMILY. TASH (formerly The Association for Per- now so they can carry For a brochure and donor card, call the Coalition on sons with Severe Handicaps) is an inter- Donation at 1-888-90-SHARE (1-888-907-4273) or visit national advocacy association of people out your the U.S. Department of Health & Human Services with disabilities, their family members, decision Web site: http://www.organdonor.gov later. other advocates and people who work (Space for your organization's name) in the disability field. TASH actively pro- Do not prim, For position only. motes the full inclusion and participation of persons with disabilities in all aspects of life. To receive an information packet, Ay f contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 108 or e-mail: [email protected]. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at MISSION STATEMENT (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops, or technicalassistance, (sTASH call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Building communities in which no one is segregated and everyone belongs; For questions about membership, conference registration or exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on government affairs or fundraising/development, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Advocating for opportunities and rights; e-mail:[email protected] For information on marketing and promotions, permission and reprints, news- Eradicating injustices and inequities; letter submissions and advertising, or publication sales, call: Priscilla Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, Supporting research and disseminating e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 2 72 TASHNewsletter, October1998 FROM THE EXECUTIVE DIRECTOR
was too complex and discouraged, rather Committee will focus on public policy than encouraged, broad participation in and political action while the Positive the organization. TASH is returning to Approaches Committee focuses on best the original, easy-to-understand structure practice in this area. consisting of only two types of bodies: The Education Committees are regular Committees (like Early Child- similarly structured. There is an IDEA hood, Positive Approaches, etc.) and Implementation Operating Committee Operating Committees (examples being which focuses on public policy while the the Conference, Finance, and Elections regular Education Committee focuses on Committee). Any member can start a best practice issues. regular committee by notifying central The second new Operating Commit- From the Executive Director office of a topic of interest. Regular tee is the Awards Committee, chaired by BY NANCY WEISS committees can be on-going or can exist Donna Gilles.This Committee provides for a specified time period in response to an umbrella under which the groups re- At their recent meeting, the a time-limited concern. They can be sponsible for carrying out award functions TASH Executive Board dis chaired by any TASH member. Operating will operate. cussed the issue of Interest and Committees are established by the Board Please note that all TASH members Action Groups/Committees. As and are chaired or co-chaired by a Board are invited to participate in any commit- you may remember, all committees used member. tees in which they have interest. Times to be called "committees" it was To assure that regular committees and locations for committee meetings will simple and everyone understood the have access to the Board and that the be published in the conference program. structure. There were regular committees Board is kept abreast of committee Some committees also meet by conference (groups of people with a common interest activities and concerns, a.Board member call during the year. who met at the conference or more often) has volunteered to serve as a liaison to Below is a list of Committees and and Operating Committees (groups like each committee. Operating Committees. Please call the Conference Committee, the Finance This year the Board established two (410-828-8274) or e-mail (committees@ Committee etc. that contributed to the new Operating Committees. The first is tash.org) for information on contacting work of the Board and the organization). called the "Anti-Aversives Operating the chair(s) of any committee you are A few years ago, the Board agreed on a Committee." It is chaired by Linda interested in learning more about. new structure. Under the new structure Rammler. Its purpose is to track the If you have any questions or concerns there were "Interest and Action Groups," continued use of aversive or restrictive regarding the changes to the committee "Operating Committees," and "Open procedures and work for their abolish- structure, please don't hesitate to call me. Project Groups." Many people found the ment. This Operating Committee will I look forward to seeing many of you in new structure confusing. work closely with the Positive Approaches Seattle! The Board felt that the new structure Committee. The Anti-Aversives Operating I.S
Operating Committees Committees Anti-Aversives Community Living Chapter Early Childhood Conference - Local Planning Education Conference Planning Individuals with Special Health Care Needs Development Integrated Employment and Careers Elections International Issues Finance Leisure and Recreation Governmental Affairs Marc Gold IDEA Implementation Multicultural Issues Media Paraeducator Issues Membership Peace Personnel Personnel Preparation Publications Positive Behavioral Approaches Related Services Sexual Orientation
EST COPY AVAMLE PAT 3 TASH Newsletter, October 1998 1998 ANNUAL CONFERENCE
LOCATION IP Seattle Sheraton Hotel and Towers NO (Headquarter Hotel) Y1400 Sixth Avenue A% Seattle, Washington 98101 ..NAlerr Phone: 206-621-9000 Rates: $123.00 Single$133.00 Double$20.00 Additional Person Room tax is an additional 15.6% per night Washington State Convention and Trade Center (Location of Exhibits and Conference Sessions) TASHConference '98 800 Convention Place (1 block from Sheraton) SEATTLE. WASHINGTON Seattle, WA 98101 206-727-2814 ALTERNATEHOTELS Tentative Conference Agenda Seattle Hilton Sixth and UniversitySeattle, Washington 98111 Tuesday, December 1, 1998 206-624-0500 8:00 PM - 10:00 PM Registration Open Rate $112.00 single/double, plus 15.6% tax $15.00 extra person Pre-Conference Activities 2 1/2 blocks from the Convention Center Wednesday, December 2, 1998 7:30 AM 8:45 AM TASH Tech Registration Seattle Crown Plaza 8:30 AM 4:30 PM Club TASH Day Care/Youth Activities 1113 6th Avenue Seattle, WA 98101-3048206-464-1980 9:00 AM 4:00 PM TASH Tech Workshops Rate: $115.00 single/double , plus 15.6% tax 9:00 AM 4:00 PM TASH Chapter Development and 2 1/2- 3 blocks from Convention Center Leadership Training 2:00 PM -8:00 PM TASH Conference Registration AIRPORT,. 5:00 PM -7:00 PM Opening Reception in the Seattle-Tacoma International Airport TASH Exhibit Hall 16 miles south of Downtown Average cost for taxi $30, shuttle $18.00, bus $7.50 Thursday, December 3, 1998 7:30 AM - 1:00 PM Registration AIR TRANSPO TATION 7:30 AM 3:00 PM TASH Exhibit Hall Open Southwest Airlines will be the Official Airline for the 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities 1998 TASH Conference 8:00 AM 3:15 PMConference Sessions and Poster Southwest is offering a 10% discount on Presentations most of its already low fares to and from the TASH December '98 Meeting. Call (or 3:30 PM 5:30 PM Plenary Session SOUTHWEST AIRUNEW have your professional travel agent call) the 5:30 PM -7:00 PM No-Host Reception Southwest Airlines Group Meeting Desk at 1-800-433-5368, MondayFriday 8:00 AM 5:00 PM, and Friday, December 4, 1998 Saturday, 9:30 AM 3:30 PM by no later than November 24, 1998 7:30 AM 11:00 AM Registration and refer to 1.D. Code K1748 to take advantage of this offer. Call 7:30 AM 3:00 PM TASH Exhibit Hall Open right away as fares are subject to terms and availability 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities 8:00 AM 3:15 PM Conference Sessions and Poster Presentations GROUND TRANSPORTATION 3:30 PM 5:30 PM Plenary Session Grayline of Seattle Airport Express 5:30 PM 7:00 PM TASH Reception GrayLine of Seattle (sponsored by WA-TASH Chapter) A DIVISION OF HOLLAND AMERICA LINE-WESTOURS Saturday, December 5, 1998 Frequent, fast, convenient Airport Express Service operates be- tween Sea Tac Airport and the Seattle Sheraton and other down- 7:30 AM 9:00 AM Registration town hotels. Fares are $7.50 one way or $13.00 round trip. (TASH 7:30 AM 12:00 PM TASH Exhibit Hall Open attendees will receive $1.00 off). Please notify Gray Line at least 8:30 AM 1:00 PM Club TASH Day Care/Youth Activities 48 hours in advance if you require wheelchair access. For more 8:00 AM - 12:45 PM Conference Sessions and Poster details call Gray Line Airport Express at 206-626-6088. Presentations PAGE 4 274TASH Newsletter, October 1998 OCTOBER 1998
Congratulations to the following newly elected members of the
TASH EXECUTIVE BOARD
Jacki Anderson Douglas Biklen (re-elected) James Meadours Jorge Pineda Patrick Schwarz Jacque Thousand
We also extend congratulations and best wishes to Linda Bambara, the new Editor of JASH
41998 TASH Annual Conference HURRY! Seattle City Tour You will learn why Seattle has been named one of Space Is Limited! America's most livable cities! Our friendly and informa- tive tour guide will give historical background on the Take time to experience the area, point out interesting landmarks, as well as give taste, sights and sounds that insider tips on special shopping and sightseeing areas. have made Seattle one of the Included in the tour is Freeway Park and the bustling Pike Place Market where Seattleites shop for produce and premier convention art. You'll see historic Pioneer Square which was settled destinations in the countly! in 1852 and is now home to Seattle's top art galleries; Check out one, or both, of these the International District, heart of Seattle's Asian com- munity; and the magnificent gothic-style exciting tour events during your stay in Seattle. buildings on the 680-acre University of Washington campus. Next, explore the Hiram Grapes & Hops Tour Chittenden Locks, the passageway Enjoy the scenery of rural Seattle as you travel to the between saltwater and fresh for Columbia Winery and Redhook Brewery First, you tour 78,000 vessels a year. Inspect the charming Redhook Brewery Try several complimentary fish ladders where thousands of hearty microbrews, while learning the beer making process salmon travel upstream to spawn. and the history of the Redhook Brewery You'll receive a Visit a local coffee roasting plant Redhook Brewery souvenir glass during the tour. and learn all about coffee roast- Next, tour the spectacular Columbia Winery.You'll ing. Finish your tour at one last discover Columbia Winery's history and how this winery stop Magnolia Bluff neighbor- produces such award-winning wines. After the tour, enjoy hood north of the city, for picture-perfect complimentary wine tasting - a feast for the senses. views of Elliott Bay and the stunning city skyline. Date: Saturday, December 5th; tour departs at 2:00 PM Date: Sunday, December 6th; tour departs at 9:00 AM Duration: Approximately 5 hours Duration: Approximately 3 hours Cost: $42.00 (includes a box lunch) Cost: $28.00
PAGE el) TASH Newsletter, October 1998 GRASSROOTS ORGANIZING Unteasb
BY JOYCE LIPMAN
\ivho would have believed professional partnership, The Arc was we needed support from the Developmen- it? A 5-year Governor's particularly suited to providing leadership tal Disabilities Administration (DDA) to get Initiative in Maryland that in such a campaign. the letters out. DDA Director Diane provides over 64 million As a Waiting List parent myself, I felt Coughlin came through for us, and families state dollars for the Waiting List when the pressing need to address this issue and received their letters in June 1997. in earlier years we've barely eked out had begun organizing families in my own In response, we heard from nearly enough money for emergencies and county After all, politicians respond to 600 families. They all seemed to say "At transitioning youth. numbers. Then, when a friend suggested last some hope." Many told of desperate The Initiative, which draws down that we have a county forum for Waiting situations that had all of us in tears. We federal matching dollars for a total of $118 List families, I suggested that, instead, we were particularly struck by the almost 70- million, funds both categories: emergencies needed to bring people together state- year-old parents who told of losing their and transition. In addition, it funds wide. At the same time, Cristine support system (three brothers) in one completelythe Waiting List for day Marchand, The Arc of Maryland's Execu- year. The father wrote: programs and in-home supports for both tive Director, heard about a Waiting List children and adults living with their Conference in another state. "Governor, three times in the past two years, I families.It makes a major dent in the When we saw reports about how The have been hospitalized with infections. A intractable Waiting List for residential Arc of New Jersey had wrenched an physician at George Washington Hospital says services. (We hope to stretch the money Initiative out of a governor with a I need a shoulder replacement, and I suffer with creative, nontraditional services.) To conservative agenda, we decided to forge from arthritis in my lower back. My wife also help families plan their services and ahead with our own campaign. We began is disabled with arthritis in her knee and in her supports, the Initiative includes service by inviting Paul Potito, Executive Director hands. We are growing old. I retired at age 66 coordination. Finally, a cost of living of The Arc of New Jersey, to speak to our after 47 years in the workforce. I served as a increase for provider agencies, though not Governmental Affairs Committee. He paratrooper in the U.S. Army during the as much as we'd hoped, gives these gave us methodology and lessons learned Korean conflict. Governor, I am simply tired agencies more money for staff salaries. This that we could use and adapt to the ....When The Arc personnel speak of ending increase is, of course, important for quality situation in Maryland. the waiting list, our hearts sing." So with a $10,000 pot of money How we got from there to here designated by our Board of Directors from We worked throughout the summer How did this happen? Well, an a bequest, we launched our Campaign. processing these responses, building a election year and a budget surplus didn't The first thing we did was hire a cam- database, and planning the Waiting List hurt. But, primarily, our success is a paign coordinator to take care of the Conference. Two of our concerns in testimony to what advocacy can do. administrative details that the small Arc of considering the needs of Waiting List Although it seemed to, success did not Maryland staff could not accommodate. families were to provide respite care and come about because of one year's efforts. The coordinator, Susan Dotson, worked transportation, as necessary When we This story has had many heroes and with Christine and me to plan our started worrying about expenses, help heroines over more than 20 years. Some campaign, starting with a kick-off arrived in the form of a $5,000 grant from of them work in the developmental conference for families on the Waiting The Joseph P Kennedy, Jr. Foundation. disabilities field. Others are family List, set for September 1997. Moving forward, we sent a conference members. And, in recent years, many Like New Jersey, we reached out to registration form to those families who self-advocates have spoken most elo- families with a mailing to the entire had indicated an interest in the event on quently for themselves. Waiting List, asking families to join our their questionnaire. What The Arc of Maryland's 1997-98 effort. Along with a parent-to-parent letter As September approached, local Arcs Waiting List Campaign did was bring from me, the mailing included a fold-over also followed through with phone calls to together grassroots activism with careful questionnaire with a return address to The encourage family members to attend. The public policy strategy As a large member- Arc. Since we did not have access to the result was close to 300 attendees, including ship organization with a history of family/ entire Waiting List due to confidentiality, Continued on page 7 PAGE 6 TASH Newsletter, October 1998 GRASSROOTS ORGANIZING
UNLEASH THE POWER with disabilities and aging parents) tale of were flooding the Governor's office with Continued from page 6 woe, and a woman in crisis who had mail. We were also writing letters to the kidney disease and couldn't get emer- editor and getting Waiting List stories in invited public officials and legislators. To gency funding each told our stories. And newspapers across the state. Diana Sugg of emphasize that the Waiting List was about those stories had their effect. Donna the Baltimore Sun wrote a compelling front real people, families brought pictures for our Jacobs, the Governor's Deputy Chief of page story about a father in his 80s trying "FACES" display as the price for admission. Staff and a wonderful, caring person, after his wife's death to cope with caring for (We used this folding exhibit throughout the heard us and took up our cause. That day his 46-year-old son alone. We also Campaign at every major event.) was a turning point. approached legislators about joining our At the Conference Paul Potito and We also invited families representing cause. Many counties across the state held former Arc of New Jersey President Fred three age groups to a legislative hearing town meetings where panels of families Patterson - a Waiting List dad presented on unmet needs. But before doing so, gave legislators glimpses into the fears and a powerful recap of their state's Campaign Christine worked with DDA to put frustrations of Waiting List families. and its eventual success. They energized together a concrete plan delineating In Montgomery County, where I live, families and made them begin to hope numbers of people on the Waiting List, the county government co-sponsored the that this, indeed, could happen in service need, and cost, plus the amount event, which was attended by close to 300 Maryland. The program also included available through the federal match. The people. We heard the stories of the elderly information on new directions in Massa- plan set out the costs for service coordina- father who said he'd rather shoot his son chusetts as described by Leo Sarkissian, tion and salary enhancement, as well. than have him join the homeless contin- Executive Director of The Arc of Massa- These carefully described costs impressed gent under the bridge; the 70+ year-old- chusetts. To tie into the Maryland system, the Governor's Director of Finance. We mother who had just been diagnosed with families then heard from Diane Coughlin weren't just asking for help. We had done terminal cancer and two months to live; and from Beatrice Rodgers, Director of the our homework. and the younger mother who had joined Governor's Office on Individuals with The plan, however, represented more Operation Desert Storm as a respite from Disabilitiesboth terrific supporters. than numbers. It set forth five key caregiving. We also heard, "My son is my principles - all later incorporated in the best friend," and "My son is the nicest From information to action Governor's Initiative. person I know" Overwhelmed, legislators We spent the afternoon honing letters pledged their support. to Maryland's Governor, Parris Principle 1: Eliminate the Day Program Other counties planned small coffees Glendening, legislators and newspaper Waiting List in two years. where one or a few families invited their editors. We defined our message to the Principle 2: Eliminate the Family own legislators to meet them and learn of media and gathered media profiles from Support Services Waiting their situations. This approach worked those families who would agree to be List in one year. best in more rural areas, or where pro- interviewed. We planned town meetings Principle 3: With DDAs collaboration, institution legislators were less receptive and small in-home coffees with legislators the DD Council proposed to to Arc-sponsored events. to get our message across. Everyone left use Initiative dollars to fund To keep families updated on what was the Conference ready to move forward. systems reform services and going on, we (like New Jersey) sent out a Alongside the grassroots effort, we supports using self-determi- bimonthly Waiting List Watch newsletter. We joined Maryland's Developmental Disabili- nation principles. included sample letters as well as dates and ties (DD) Council to design the public Principle 4: With the support of Service events of note. In addition, we established policy piece. We strategized, lobbied, and Coordinators, everyone an 800 hotline with information and the planned events with representatives from would create a person- opportunity for questions and feedback. the DD Council, the Maryland Association centered plan so funding Finally, in January 1998, we were of Community Services and the Maryland and innovation would go invited to a meeting where Ms. Jacobs', Disability Law Center. hand-in-hand. the Governor's Deputy Chief of Staff, When we first requested a meeting Principle 5: Increase funding for direct care informed us that we did, indeed, have an with Governor Glendening's Administra- workers to ensure quality. Initiative that came close to what we had tion, we were told that only professionals, requested, though it would stretch over not families, should attend. Christine After we spoke with the Director of five instead of four years. We were elated! Marchand, believing strongly that our Finance, one of our legislators arranged a But we had to keep mum for three days strength lies in families and their stories, meeting for us with the Governor's Chief until the Governor announced his stressed the need to bring families. So we of Staff, Major Riddick. At this point, Mr. Initiative at his press conference. What a went and told our stories. Riddick promised to work with us toward challenge. After the announcement, we Sue Dotson with her son Matthew, an Initiative. We were pretty sure some- broke out the champagne. And the me with my "sandwich-generation" (baby thing was forthcoming, but we didn't reporters came to us. We made the front boomers who have the dual responsibility know what or how much. page of both the Washington Post and the of caring for adult sons and daughters While all of this was going on, families Continued on page 29 PAGE 72 TASH Newsletter, October 1998 OOOOO MEDIA ADVOCACY Media Advocacy and,u Empowerment
Themba (Sage Publications) include: "Media Advocacy seeks to influence One way to selection of topics by the mass media and sway public shape debate about these topics...(its) purpose is to contribute to the develop- opinion is with ment and implementation of social and policy initiatives that promote health and strategic long well-being and are based on principles of range and social justice...relies on coalition building Attitudes about ourselves and and community organization for its base others are created and shaped sustained media 5 of support...seeks to provide community by experiences. Most experi- groups with skills to communicate their ences are firmly rooted in first- campaigns. own story in their own words." hand reality Others are greatly influenced by positive and negative media images. Building Relationships Media is the most powerful influence of with the Press modern society. Negative media images This article introduces some basics. Now is the best time to establish and/ create more of a collective handicap than Individuals and organizations establish or build relationships with the press. Like one's own individual disability priorities that will, in turn, determine anything in life, including your work to As the disability community's leading results. All of us have been led to believe influence policy makers, educators and the organizations continue their fight(s) for we are "power-less." When it comes to general public, relationships are the critical human rights and to sustain hard won impacting media, that is not true! As foundation for success. The media is no victories (TASH, on behalf of IDEA; Not people with developmental disabilities, different. They are just another "system" Dead Yet against assisted suicide; ADAPT their families and friends become empow- we are trying to penetrate and influence, in support of MiCASA, to name a few), ered toward full community inclusion and to help shatter centuries of negative public one way to sway public opinion is with options, we need to deliver messages of opinion and initiate a paradigm shift strategic long range and sustained media truth with dignity, clarity and strength. toward a new reality campaigns. It is said every crisis creates an Look at newspaper and magazine ar- It's critical to start building and opportunity. Recent negative coverage ticles as an opportunity for inclusion about renewing relationships with the press on and backlash triggered by the Americans disability issues. Most articles are a basis a local and national level. This can start with Disabilities Act (ADA) and Individu- for establishing and building relationships. with and be nurtured by one person in als with Disabilities Education Act (IDEA) Do articles about legislation, housing, em- your organization dedicated to this across the nation has created opportunity ployment, education, business, transporta- responsibility. Through the eyes of for the disability community to activate tion, or diversity have a potential disability reporters who cover disability issues, the media advocacy and empowerment. perspective angle or "hook?" general non- disabled public and policy Media advocacy principles, as Dust off past articles. Establish a makers come to learn, understand, outlined in Media Advocacy and Public clipping file and and internal media support and appreciate disability rights, Health by Lawrence Wallack, Lori strategy. Designate a media relations Dorfman, David Jernigan and Makani community inclusion, options and pride. Continued on page 9
PAGE 8 278 TASHNewsletter,October 1998 MEDIA ADVOCACY
MEDIA ADVOCACY AND correct (PC) a smoke screen to deflect colleagues) has no objection to placing the EMPOWERMENT the real issues of a minority people's right disability either before or after the person Continued from page 8 to name themselves. when speaking or writing. However, she Increasingly many people feel the objects strongly to those who insist that person to contact reporters who inter- concept of "PC" is that of "Politically People First Language is the only proper viewed you and colleagues, or who wrote Conscious" as opposed to "Political form. The reasons are based on her about disability/diversity issues. The Correctness." Those involved with people academic research, private practice, and designated media person should contact with developmental disabilities clearly experiences as a woman with a disability news producers, editors, and reporters prefer People first Language. People First "I don't mind People first Language, I when disability and diversity issues was one of the first self-determination do mind the insistence on it. My appear. Increased contact is a basis for organizations of, by and for people with disability is an integral component of building solid relationships. Give positive developmental disabilities that sprung who I am I am incredibly proud to be and negative feedback (language and out of the Disability Rights and Indepen- a disabled woman. As a psychologist, I content) and background relating to a dent Living Movements of the 1970s. have listened to hundreds of people with bigger disability picture. Separate People first Language is not as much an disabilities tell how horrible it has been intention from result. Feedback helps issue for those involved in the physical to have parts of themselves rejected. establish trust. and cross-disability rights, culture and They have been harmed by messages that Language within an article has a pride movements. suggest they should downplay the different tone than headlines or photo Carol Gill is an Assistant Professor disability and play up their personhood captions. Specific editors are responsible and Director of the Chicago Center for as if the two could be separated." for these. Unlike reporters who may be Disability Research; Department of Disability pride and culture move- savvy with disability semantics, editors Disability and Human Development; ments affirm that we are who we are with don't have opportunities to be educated University of Illinois at Chicago, a board our disability, not in spite of it.Integrat- in terms of language. member of the Society for Disability ing our disabilities in a substantial and One goal is to position your organi- Studies and a psychotherapist, whose fundamental way can lead to improved zation as a source to be kept in the files long-term private practice has included self esteem. With the exception of the of print and electronic media (TV and people with disabilities in Los Angeles and phrase, "people of color," I know of no radio) for future reference/comment. You Chicago. Dr. Gill (and many of her other examples of placing personhood can provide accurate information by over gender, age, religion, ethnicity, adding a pro-active, pro-disability spin. sexual preference, etc." Ten years ago, Jay Mathews (former Over the past twenty years, many LA Bureau Chief for the Washington Increasingly, many language guidelines have been developed Post) broke the story of Tiffany Callo (a people feel the within different segments of the disability young woman with cerebral palsy community in an attempt to make concept of "PC" is fighting for custody of her children) on a journalists and mainstream media outlets national level through a series of articles that of "Politically aware of the destructive, paternalistic and in the Washington Post. Five years ago, Conscious" as defaming ramifications of their language choices. Several years ago, a survey was he wrote a book, and credited disability opposed to "Political rights attorneys Margaret Jakobson and conducted by EIN SOE The Dole Deborah Kaplan for the strategy. Rela- Correctness." Those Foundation on Employment of People tionships pay off for years, even if 1111 involved with people with Disabilities and others with recom- reporters change media outlets. with developmental mendations forwarded to the AP Style- book. Even though it was appreciated by "What's in a Name?" disabilities clearly the Associated Press, some still perceived Like other stigmatized minority prefer People first that action as a PC attempt. groups, people with disabilities are in a language... People Whatever your language choice, continuous and evolutionary process of communicate it with reporters covering choosing language and semantics they first Language is not disability issues. Consciousness raising prefer to be used to describe themselves as much an issue in terms of language is a long and never- and their experiences. Like other aspects ending process. There is consensus in for those involved of disability politics, this is not homog- avoiding terms such as wheelchair- enous. There are ideological differences in the physical and bound or confined; inspirational, brave manifest in language usage amongst cross-disability and courageous; medicalization of the various factions of disability rights, pride disability experience, such as impaired, rights, culture and and culture movements. afflicted with, victim of and suffers from; Sometimes language is merely pride movements. and outdated labels such as crippled, dismissed as an effort to be politically Continued on page 10 PAGE 9279 TASH Newsletter, October 1998 MEDIA ADVOCACY
MEDIA ADVOCACY AND them not to fix the camera on a sign language interpreter, augmentative EMPOWERMENT 1111 Continued from page 9 Through the communication devise, wheelchair part, eyes of reporters guide dog, cane, or fingers reading Braille. lame, moron, deaf and dumb, defective Camera persons and reporters are just who cover disability and idiot. consumers of mainstream media and It appears that journalists (and issues, the general therefore hold the same biased beliefs that 1111 111 therefore the general public) have adopted non-disabled people with disabilities are just the sum of the above mentioned parts, as opposed to the transitions from Negro, to Black, to public and African-American with more acceptance whole and complete human beings. than they do preferences for disability policymakers Most sound bites are 1015 seconds, language. Whether that is due to the come to learn, so make it count. Always begin with the most important information. In the first 10 consensus of terms within the African- understand, support American community, or acceptance of the seconds, a reporter decides if you are a power of their voice, is open to discussion. and appreciate good and dynamic spokesperson or not. disability rights, Before the interview, give reporters a Public Service Announcements press kit and point out pertinent back- IIcommunityinclusion, (PSAs) and Public Affairs ground information, statistics, chronolo- Programming options and pride. gies and remind them of your preferred For any non-profit 501 (c) (3) language. You can also correct them once organization these two avenues are you start. Maintain eye contact with the wonderful opportunities to disseminate reporter who may be positioned next to basic information. Each media market is information. At that time they may tell the lens of the camera, and try to keep different. For example, in Southern you if and when they will use your PSA. the interview like a conversation. California organizations must first receive PSAs can either be generic or event- Don't let the reporter back you into a a identification number from the South- specific. For event-specific, be certain corner and try to maintain control of the ern California Broadcasters Association the content does not mention fund interview with your agenda, and that of (SCBA #) to qualify (a $35 annual fee) for raising, just an announcement for an our constituency. Don't let a reporter this type of coverage. To find out if such event that is open to the public. provoke you so you raise your voice, an organization exists in your part of the Public affairs programs (sometimes becoming unreasonable. Use analogies, nation, contact any public affairs or called community affairs) are a great as they paint the big picture for the public service director at any local TV or opportunity for more in-depth communi- general public (through the reporter). radio station. cation about the organization or a Offer (or kindly persist) to write Public Service Announcements (PSAs) particular current and newsworthy issue. interview questions (to insure quality and public/community affairs programs A specific spokesperson should be control, so they don't miss the mark). appear on radio and TV stations as a selected in advance. Call program This is also an opportunity to educate the responsibility for the station's right to use producers (who are often the Public media about etiquette for communicating the public airways. Some stations are Affairs Directors) to "pitch" the story and with people with disabilities. On camera, located on university campuses. University the guest. You should watch and/or this is very important because the Affiliated Programs, Disability Studies and listen to the show prior to making the comfort level will transcend to the Disabled Student Service Centers may phone call to make sure it is a good television audience. have contacts with the station. match. The better prepared you are, the Together, we can, and will make a PSAs range from 10 to 60 second better your chances for placement and difference. Here's to your own stories, in formats, so check with each specific the better the result of the program. Most your own words! station. Some stations broadcast in public affairs interview segments are 15 languages others than English and each 30 minutes and air at non-peak hours, Tan Susan Hartman is President has its own format (rock, classical, talk, but they are a good opportunity. of EIN SOF Communications, a religious, news). Radio PSAs are easier marketing, public relations and because they don't require costly graphics Tips on being interviewed production company working or slick production. All PSAs must be It is perfectly appropriate for you to exclusively with the disability printed on non-profit organizational set the tone and ground rules in terms of community. EIN SOF Communi- letterhead and must arrive at the station language and avoiding condescending cations may be contacted by 3-4 weeks prior to their usage. camera angles. By lowering the tri-pod e-mail
PAGE 10 TASH Newsletter, October 1998 OCTOBER 1998
The Centerfor Autism and Related Disabilities & The Florida Outreach Project for Individuals with TASH wishes to Deaf Blindness are excited to announce the Sixth Annual Conference for People with Autism, acknowledge the generous Deaf-Blindness & Related Challenges BUILDING A VISION: support of our New Perspectives & Possibilities January 23 & 24, 1999 newest lifetime members Hilton Clearwater Beach Resort, Clearwater Beach, Florida Featuring National Keynote Speakers Michael Giangreco, Barry Prizant, Donna Gilles, Naomi Lorch Gary Sasso and Ted Carr. & Janice Payne Topics will include Inclusion, Communication, Social Skills and Positive Behavioral Support. Lifetime membership entitles you to full international and chapter member benefits Conference Registration Fees: for your lifetime. The cost can be remitted over Pre-registration prior to January 9, 1999: $55.00 On-site: $65.00 several monthly payments. If you are interested in becoming a lifetime member of TASH, For more information or to request registration materials, contact Donna Casella at 800-333-4530 (Florida only) or contact Rose Holsey at 410-828-8274, ext. 100. 813-974-2532 (outside Florida); e-mail
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pga-g5 Produced bq The Center for Aging Persons with Developmental Disabilities (CAPDD), Institute for the Study of Developmental Disabilities (ISDD) at Indiana University The University Affiliated Program of Indiana 2 8 EQUALITY EQUALITY
BY NANCY BURNS
There's an issue I've not heard "label" because they do things differently talked about in the disability and have different ways of getting movement. All the discussion If we could learn to around. about transportation, housing, Someone I know once told me that jobs, and education is great.I personally put down the "labels," having a disability is only a small part of believe we're STILL at square one with who I am as a person. She's right.I wish labeling. walk away from them people who give labels could know that. I've noticed people sometimes have a We want to be treated with the same real tendency to look at the disability and concentrate on the respect as everyone else! If we could do rather than the person. (Hey, don't feel that treat each other with respect bad, those of us who have a disability do person, we'd be in a better then there would be the equality every- the same thing!) If we could learn to put one deserves. What a concept! down the "labels," walk away from them position to help in a more and concentrate on the person, we'd be concrete, positive way. in a better position to help in a more concrete, positive way Listening is the Treat me with the most important thing; not just with the same amount of respect physical ear but with the heart, as well. and consideration you To truly know what a person wants and videos they showed was "Willowbrook: needs, not what someone else wants for The Last Disgrace 25 Years Later" from would give to someone else them, is the issue. Then, and only then, the Geraldo Show that aired on January 6, no matter what. can a real difference be made. But how 1997. That's where I got the idea for this Get to know the person do we truly put down those labels? story, and why I wrote the first para- on the inside and not If we have to use labels, why not graph. I've been abandoned and hurt by just by the disability. have more generic or general terms than people who didn't care. I've had to live I bet you'll find they what we have now? Forget about being with insensitive labels. I've had people "mentally retarded," "physically or call me mean and rude names. I also are not that much mentally challenged," "Down syndrome," have lived in places where I was treated different from you. "mentally ill," "consumer," or "client" and the way you wouldn't think about all the rest. Being thought of as a treating your puppy I've been judged, consumer or customer makes me feel like looked down on, not given a thought or a I should be going out and buying a loaf chance, betrayed, laughed at.I've been of bread or something. Why can't we be pitied, mistreated, abused, not respected, Reprinted with permission of thought of as ordinary, regular people? called names and stared at. Community Advocacy Press, As someone who has a disability, I I've heard of some parents abandon- Winter 1998. Community don't want to be thought of or treated like ing or starving their children. I suppose Advocacy Press is published I'm special, stupid, a freak, different, the they did this because of stupidity, fear, or quarterly by Capabilities Unlim- village idiot, an alien from outer space, a ignorance. I don't know! It's always ited, Inc. All articles are written by second class citizen or invisible. Treat me amazing to me how differently people can people with disabilities. For with the same amount of respect and see each other. Is this like having two additional information on Commu- consideration you would give to someone people read the same newspaper story nity Advocacy Press, contact else no matter what. Get to know the and coming away having two different Capabilities Unlimited at 1-800- person on the inside and not just by the ideas or interpretations? 871-2181. disabilityI bet you'll find they are not What I'm seeing are people who are that much different from you. being denied jobs, housing, transporta- I attended a meeting with some tion, and accessibility because of a friends earlier this year. One of the disabilityI see people having to wear a 00 PAGE 12 TASH Newsletter, October 1998 LABELING
This kind of public education is The following interview with constant. A one-shot attempt to educate Alan Robichaud, Executive the public or various aspects of it is not Director of the New Hampshire effective. "Vigilance is constant," as the Developmental Disabilities STATUS saying goes. Council, was conducted by Annie Forts on behalf of Community Has there been any Council Advocacy Press. policy statement on labeling? AND Specifically, no. The Council has never formally adopted a policy state- Where does the New Hampshire ment on the issue of labeling. However, Developmental Disabilities EFFECTS through our practices, initiatives and Council stand on the issue of recruitment of Council members, we are labeling? cautious not to accept proposals or The New Hampshire Developmental members that do not project a positive, Disabilities Council (Council) does not OF healthy attitude in relating to or about believe it is appropriate to label people. people with disabilities. Hopefully, we have learned that all people We must remember ... the fields of should be accepted for who they are, medicine and human services invented with all the talents, skills and imperfec- LABELING all, or most, of the words that today we tions that life deals out. Labeling has find offensive. We must be critical and always created negative images when fight to prevent the constant use of applied to people with disabilities, as it BY ANNIE FORTS, NEW HAMPSHIRE language which people now find offen- always projects the disability rather than sive. Certainly we must stamp out a person's gifts and talents. oppression. But, we cannot condemn the These negative images then go on to uninformed just because they are using cause society to treat people with what we once taught them. disabilities as less than human and Change takes time. Change takes time. Worthwhile worthy only of our charity and pity change will make that time beneficial. There is no room for this way of thinking W9rthwhile change will When we take the time to look inside the if we are to successfully advocate for all person we will discover the treasures of people to lead happy and healthy lives. make that time beneficial. .each individual. If we don't care to look, The poster created by the Human then we don't care. When people don't Policy Press, entitled: "Label Jars... Not When we take the time care, then communities don't care. When People" still has an important message for communities don't care, society doesn't us all and serves as an unpleasant care. When society no longer cares, we reminder that society still treats people to look inside the person have some very serious problems. with disabilities differently Developmental Disabilities Councils we will discover the treasures across the country are building caring What is the Council doing on the communities. With the help of people issue of labeling? of each individual. with disabilities, their families and The Council does not have a specific neighbors we will continue to educate initiative on dealing with the issues of If we don't care to look, and welcome the participation of all our labeling. We have worked hard to citizens in creating healthy communities. educate ourselves and others as to the Then, maybe then, people will no longer negative impact labeling has on people. then we don't care. feel a need to use labels on people who Whenever it best serves, individual were once strangers to them. Council members and staff will respond, through direct conversations, letters to Reprinted with permission of Com- the editor and other means to correct organizations and others as the need and munity Advocacy Press, Winter injustices caused by inappropriate as opportunity arises. This pamphlet was 1998. For additional information labeling. inspired, in part, by the Vermont Devel- on Community Advocacy Press, con- Additionally we continue to use a opmental Disabilities Council. [The tact Capabilities Unlimited, Inc. at pamphlet which the Council created a creation of this pamphlet] is a clear 1-800-871-2181. few years ago, entitled Choosing Words reflection that Councils take positive With Dignity, which we give to newspa- imaging of people with disabilities very per reporters, legislators, community seriously. 283 PAGE 13 TASH Newsletter, October 1998 PEOPLE first LANGUAGE To achieve INCLUSION, COMMUNITY, and FREEDOM for people with disabilities, we must usePeople first Language
BY KATHIE SNOW
Who are "the handicapped" . . . 3)having a desire to be treated with the the "disabled"? Society's same dignity and respect afforded myths tell us they are: The difference people without disabilites. between the right word people who "suffer" from the and the almost right word Unique to the disability community "tragedy" of "birth defects"; is the difference is that it's the only minority group that paraplegic "heroes" "struggling" to any American can join in the split second become "normal"; between lightning and of an accident. If/when it happens to "victims" of diseases "fighting" to the lightning bug. you, will you have more in common with regain their lives; others with disabilities or with your categorically..."the disabled, the re- family, friends, and co-workers? tarded, the autistic, the blind, the deaf, The Disability Rights Movement is the learning disabled" and more. following in the footsteps of the Civil Mark Twain Rights Movement of the '60s and the Who are they, really? Women's Movement of the '70s. While They are moms and dads and sons people with disabilities and advocates and daughters...employees and employ- work to end discrimination and segrega- ers ...scientists... friends and person with a disability having to beg on tion in education, employment, and our neighbors...movie stars...leaders and the street with "cap in hand." communities at large, we must all work to followers...students and teachers... they end the prejudicial language that creates are...people. They are people. "Handicapped," "Disabled," or an invisible barrier to being included in "People with Disabilities": Which the ordinary mainstream of life. They are people, first. description is more accurate? "Disability is a natural condition of Are you myopic or do you wear glasses? Using "the handicapped," and even the human experience," according to the Are you cancerous or do you have "the disabled," usually evokes negative U.S. Developmental Disabilities Act and cancer? feelings (sadness, pity, fear) and creates a The Bill of Rights Act, 1993. Disability is Are you freckled or do you have stereotypical perception that people with not the "problem." We need to rid freckles? disabilities are all alike. All people who ourselves of the word "problem" when Are you handicapped/disabled or do have brown hair are not alike. All people talking about people's needs! A person you have a disability? who have disabilities are not alike. who wears glasses doesn't walk around People First Language describes what Many people who have disabilities saying, "I have a problem seeing." She a person HAS, not what a person IS. would never think of themselves as would say, "I wear (need) glasses." People First Language puts the "handicapped." Recognize that a "problem" is really a person before the disability The disability community is the need. Disability has been defined as a body largest minority group in our country. It The real problem is attitudinal function that operates differently. includes people of both genders and from barriers. There have always been people all religions, ethnic backgrounds, and with disabilities in our world and there Contrast that meaning with: socioeconomic levels. About the only always will be. A published origin of "handicap" things people with disabilities have in If educators and our society at large refers to "hand in cap," a game where common with one another are perceived children with disabilities winners were penalized or put at a 1)having a body function that operates as individuals who have the potential disadvantage. Another theory regarding differently; to learn, who need the same educa- the origin of the word is that it refers to a 2)facing prejudice and discrimination; and Continued on page 15 PAGE 14 28LiTASH Newsletter, October 1998 PEOPLE first LANGUAGE
We must use People first crucial issue. If people with disabilities on the highway" "Disabled" in that Language are to be included in all aspects of our context means "broken down." People with disabilities are not Continued from page 14 communitiesin the very ordinary, very wonderful, very typical activities most broken. people take for granted - then they must talk about themselves in the very If a new toaster doesn't work, we While people with ordinary, very wonderful, very typical return it, say "It's defective," and get language other people use about them- a new one. Do we do that with disabilities and selves. babies who are born with disabili- advocates work to end Children with disabilities are ties? The accurate term is "congeni- discrimination and children, first. The only labels they need tal disability" are their names.Parents must not talk segregation in education, about their children in the clinical terms When we understand the meanings employment, and our used by medical practitioners. A disabil- of words and how they're misused, we communities at large, we ity label is simply a medical diagnosis. realize they are the tip of the iceberg of Since the parent of a child who wears inappropriate and unacceptable language. must all work to end the glasses (medical diagnosis: myopia) When people with disabilities are referred prejudicial language that doesn't say, "My daughter is myopic.", to by their medical diagnoses, we have creates an invisible why does the parent of a child who has a devalued them as human beings. When medical diagnosis of mental retardation we devalue others, we devalue ourselves. barrier to being included say, "My daughter is retarded."? When we start calling things by their in the ordinary Adults with disabilities are adults, right names, when we recognize that mainstream of life. first. They must not talk about them- people with disabilities are people first, selves the way service providers talk we can begin to see how people with about them. disabilities are more like people without Since an adult with a medical disabilities than they are different. diagnosis of cancer doesn't say, "I'm When we understand that disability tion as their brothers and sisters, and cancerous", why does an adult with a labels are simply medical diagnoses, we who have a future in the adult world medical diagnosis of cerebral palsy say can put them in their proper perspective. of work, we wouldn't have to fight "I'm disabled."? My son, Benjamin, is 11 years old. for inclusive education. In our society, "handicapped" & He loves the Lone Ranger, ice cream, and "disabled" are all-encompassing terms playing on the computer. He has blonde If employers and our society at that are misused: hair, blue eyes, and cerebral palsy. His largebelieved adults with dis- disability is only one small piece of his life. abilities have valuable job skills People with hearing or vision For many people with disabilities, their (because they received a quality disabilities don't need "handicapped" medical diagnoses define who they are. education), we wouldn't have to or "disabled" parking or restrooms. When I introduce myself to people I fight for real jobs for real pay in the People with physical disabilities do don't tell them I'll never be a prima real community need accessible parking and restrooms. If business owners and our society at largeviewed people with If a "handicapped" or "disabled" When we start calling disabilities as consumers with money entrance has a ramp for people who things by their right names, to spend (because they're wage use wheelchairs, does the doorway earners), we wouldn't have to fight have Braille signage for people with when we recognize for accessible entrances and other visual disabilities? that people with disabilities accommodations. are people first, we can Accommodations that enable people Many people who do not now have a with disabilities to access a facility begin to see how people disability will have one in the future. regardless of their disabilities are with disabilities are Others will have a family member or accessible. more like people without friend who acquires a disability.If you acquire a disability in your lifetime, how "Disabled" is not acceptable, either. disabilities than they will you want to be described? How will Our society "corrupts" the meaning are different. you want to be treated? Disability issues of certain words. When the traffic are issues that affect all Americans. report mentions a traffic jam, you'll Using People first Language is a often hear, "There's a disabled vehicle Continued on page 16 28`,i PAGE 15 TASH Newsletter, October 1998 PEOPLE first LANGUAGE
We must use People first Language Continued from page 15 EXAMPLES OF PEOPLE first LANGUAGE ballerina. Like others, I focus on my strengths, the things I do well, not on Labels Not to Use People first Language what I can't do. I don't say, "My son can't write with a pencil." I say, "My son uses a computer the handicapped or disabled people with disabilities to do his school work." I don't say, "My son can't walk." I say, "My son uses a the mentally retarded people with mental retardation walker and a wheelchair." And Benjamin isn't "wheelchair-bound." He's free when he's retarded he has a cognitive disability he uses itfree to go when and where he wants to go. We know that a person's self-image is my son is autistic my son has autism strongly tied to the words used to describe that person. We've been told she's a Downs kid, a mongoloid she has Down syndrome that descriptions can become a self- fulfilling prophecy If a child is told she he's learning disabled he has a learning disability is stupid or slow or lazy, she will prob- ably become that.If told she's brilliant, she'll probably become that. I'm a paraplegic I have paraplegia People with disabilities, having been described by their medical diagnoses all she's crippled she has a physical disability their lives, often must convince them- selves that they are capable and have he's a dwarf (or midget) he's of short stature or he's short potential for success. Parents must convince themselves and their children that their kids are capable and have she's emotionally disturbed she has an emotional disability potential for success. If you don't believe in yourself, it's hard for others to believe he's wheelchair bound or he uses a wheelchair in you. confined to a wheelchair We have the power to change all this for current and future generations. People first Language can change how people normal and/or healthy kids typical kids or kids without with disabilities feel about themselves. disabilities People first Language can change how society views and treats people with he's in special ed he receives special ed services or disabilities. additional support services Benjamin goes ballistic when he hears "handicapped." I hope when he's grown, labels will be extinct. handicapped parking, accessible parking, bathrooms, etc. bathrooms, etc.
Reprinted with permission of the she has a problem with.. . she has a need for.. . author Kathie Snow may be contacted at 250 Sunnywood Lane, Woodland Park, CO 80863-9434; Keep thinking. Voice 719-687-8194; Fax 687- 8114; e-mail: [email protected] There are lots more examples out there. (Rev. 1/98) And practice, practice, practice. Old habits die hard!
PAGE 16 28f3TASH Newsletter, October 1998 The Herb Lovett Memorial Fund announces The First Annual Rabbit Award
"In the earlier part of this century we believed that the new Behavioral Sciences, with a cunning scheme of rewards and punishments would remove difficult behaviors effortlessly. I think that dream is dead. I hope so. I hope that we've come to a point in our history where we have started to recognize that: the end point of pure thought is probably death; that we are not going to think our way out of these problems; and that we require a new respect for the irratio- nal the intuitive, and the felt. We are discovering that we need people who step out of the mode of what we created in the earlier parts of this century, to remind us of who we are and who we need to be for one another."
Herbert Lovett Bolton Institute, 1995
Herb had a strong tie to rabbits in his life. The rabbit is known for its ability to procreate, its fleetness, its ability to make great leaps, and its ability to call down fears and face them.
On March 20, 1999 the Herbert Lovett Memorial Fund, Inc. will be presenting its first Rabbit, a cash prize, to a person who has made the leap. This award is open to all. We are also looking for donations to make this a substantial fund. For more information on the Herbert Lovett Memorial Fund, write to either address below:
Apply by letter to: Send donations to: Rabbit Award Herbert Lovett Memorial Fund c/o Michael Dowling c/o Barbara Cutler 76 G Street 71 Theresa Circle South Boston, MA 02127 Arlington, MA 02474 Tel. 617-269-8382 Tel. 781-648-1813 Fax 617-268-8908 Fax 781-648-1813 CENTERAlIONHUMAN POLICY INTERNET RESOURCES Concerning People With Developmental Disabilities
BY RACHAEL ZUBAL AND STEVE DRAKE
The Center on Human Policy an e-mail message to: To subscribe, send a message to: periodically produces resource [email protected] with the [email protected] reviews on a variety of topics; following in the body of your e-mail with the following in the body of the this article highlights some of message: subscribe justice message: SUBSCRIBE OUR-KIDS many types of information that can be
INTERNET RESOURCES Program is a federally funded network of preconceived notions about what it's like Continued from page 18 grantees which provides information, to live with a disability training, and technical assistance to with messages. Connection software and businesses and agencies with duties and The Disability Rights Activist - http:ll procedures vary depending on your ISP responsibilities under the ADA and to www.disrights.org/ Some newsgroups that we have found to people with disabilities with rights under This site brings together much of the be useful and informative are: the ADA. information needed to enable anyone bit.listserv.down-syn - Contributors interested in the rights of people with on this newsgroup are primarily parents The Arc Home Page - http:ll disabilities to work for those rights, of children and adults with Down TheArc.org/welcome.html including tools for activists, action alerts, syndrome. Discussions and information This is a very large and developing announcements, and information on are highly varied and include research, site. It offers an impressive assortment of issues that affect the lives of people with education, and adult living as just some articles, position papers, links, legislative disabilities, and contains links to several alerts and more. of the topics that are covered. disability rights organizations and misc.handicapThis is a very publications. broad-based and varied newsgroup that is Association of Disability Advocates - literally open to any topic relating to http://www.icanect.net/fpa/ Disability Social History Project - disability Some of the information can The Association of Disability http://wwwdisabilityhistory.org/ be interesting and valuable. Advocates exists for only one purpose: to dshp.html provide information and assistance to bit.listsermada-lawThis People with disabilities have an newsgroup is a resource for specific individuals with disabilities in the exciting and rich history that should be applications of the ADA. Many contribu- exercise of their civil rights as provided shared with the world. The ways in tors on the list are lawyers involved in by the Americans with Disabilities Act. which disabled people have acted and litigation regarding ADA violations. have been treated and viewed must be bit.listserv.autismParents and Autism Network International (ANI) - examined within the social, political, professionals are the major contributors http://wwwstudents.uiuc.edu/ economic, and religious climates of the to this listserv. Contributors express the bordner/ani.html times and cultures. This project will full range of opinions on controversial This is an autistic-run self-help and present images and information about issues affecting people with autism (e.g., advocacy organization for autistic people. disabled historical figures and events in inclusion, applied behavioral analysis, an attempt to give an introduction to facilitated communication). Axis Disability Rights Website disability social history. alt.education.disabledThis is an http://www.island.net/axis active newsgroup, often involving heated This site contains some very good Electric Edge: Online Edition of debates. The most hotly and consistently articles on inclusion and disability, as well Ragged Edge Magazine - debated topic is inclusive education. The as other progressive resources. http://www.ragged-edge-mag.com/ majority of contributors are educators This online edition of Ragged Edge and parents. Bobby - http://www.castorg/bobby magazine (the successor to Disability Created at the Center for Applied Rag) includes the best writing today WORLD WIDE WEB PAGES Special Technology (CAST), Bobby is a about the most "ragged issues"assisted World Wide Web pages (more free web-based service that helps make suicide, long-term care, rights, access, commonly called web pages) are multi- web pages accessible to people with and covers the disability experience and media sources of information on the disabilities. what it means to be a crip at the turn of Internet. Below are several disability- the millenium. related sites that may be of interest. Consortium for Citizens with Disabili- These sites emphasize self-advocacy, ties (CCD) - http://www.c-c-d.org Facilitated Communication Institute - inclusion, and civil rights. CCD is a coalition of national http://soeweb.syr.edu/thefci disability organizations working together This site offers articles, research Ability Network Magazine - to advocate for national public policy that summaries and other material relating to http://www.ability.ns.ca/anet.html ensure the self-determination, indepen- facilitated communication (FC). A disability-oriented magazine with dence, empowerment, integration and articles authored, for the most part, by inclusion of children and adults with Family Village: A Global Community people with disabilities. disabilities in all aspects of society of Disability-Related Resources - http:// wwwfamilyvillage.wisc.edu/ Americans with Disabilities Act (ADA) Disability Cool - hap:// Family Village is a global community Technical Assistance Program - ww.geocities.com/HotSprings /7319/ that integrates information, resources, http://www.adata.org/ discool.htm and communication opportunities on the The ADA Technical Assistance This web site challenges all the Continued on page 20 PAGE 19289 TASH Newsletter, October 1998 CENTERAPIoNHUMAN POLICY
INTERNET RESOURCES individuals and their families to shape women with disabilities. This web site Continued from page 19 policy and service practices. was created to provide information beyond the 1995 international women's Internet for persons with mental retarda- Inclusion Press Home Page - http:// conference in Beijing, China and to be tion and other disabilities, their families, www.inclusion.com enhanced with new information as it and those that provide them services and "Inclusion Press is a small press striv- becomes available over time. supports. ing to produce readable, accessible, user- friendly books and resources about full in- Kids Together Family Voices - hap:// clusion in school, work, and community" http://www.kidstogether.org www.familyvoices.org/vrosales/ This non-profit organization, co- "We are families from throughout the International Coalition on Abuse & founded by parents and organized by United States who have children with Disability - http://www.quasar.ualberta. volunteers, supports the belief that special health needs. We are also ca/ddc/ICAD/icad.html children with disabilities, like all chil- caregivers, professionals, and friends From the University of Alberta, a dren, have the need to be welcomed, whose lives have been touched by these valuable resource regarding the issues cherished and embraced in our commu- children and their families. We are a surrounding abuse and disability nities. This site is designed to provide diverse group, representing a wide helpful information and resources to variety of children, health conditions, Institute on Community Inclusion enhance the quality of life for children families, and communities. Our concern http:llweb I .tch.harvard.edulici/ and adults with disabilities, and commu- for children brought us together." The Institute for Community nities as a whole. Inclusion supports the rights of children Federation for Children with Special and adults with disabilities to participate Mainstream Magazine - http:// Needs - http://www.fcsn.org/home.htm in all aspects of the community www.mainstream-mag.com Organized in 1975 as a coalition of On-line version of the well-known parent groups representing children with Institute on Community Integration disability magazine. a variety of disabilities, the Federation http://www.ici.coled.umn.edu/ici/ operates a Parent Center which offers a "We believe that persons with National Association of Protection and variety of services to parents, parent developmental disabilities should live as Advocacy Systems (NAPAS) - http:ll groups, and others who are concerned valued members of our communities, www.protectionandadvocacy.com/ with children with special needs. receiving the services and supports they NAPAS is a national voluntary need to fully develop their potential." membership organization for the feder- GLADNET - http://www.gladnet.org ally mandated nationwide network of The Global Applied Disability and Institute on Disability disability rights agencies, protection & Information Network on Employment http://iod.unh.edu advocacy systems (P&As), and client and Training, better known as GLADNET, The Institute is a University Affiliated assistance programs (CAPs). brings together research centers, universi- Program (UAP) located at the University ties, enterprises, government depart- of New Hampshire that promotes full National Association of State Directors ments, and other groups for the promo- inclusion of people with disabilities in of Developmental Disabilities Services, tion of research as well as the collection, their communities. Inc.http://www.NASDDDS.org/ analysis and exchange of information This non-profit organization is concerning people with disabilities and Institute on Disability Culture - devoted to expanding and improving work. http://www.dimenet.com/disculture/ public services to individuals with mental "People with disabilities have forged retardation and other developmental GnarlyBone News - http:// a group identity We share a common disabilities. www.realtime.net/cyanosis/gnarly history of oppression and a common This online newsletter supports and bond of resilience. We generate art, National Council on Disability - promotes disability activism with a focus music, literature, and other expressions http://www.ncd.gov/ on arts, culture and media. This site of our lives, our culture, infused from our The National Council on Disability includes information on how to subscribe experience of disability" (NCD) is an independent federal agency and access past issues and links to other making recommendations to the Presi- disability activism resources. International Leadership Forum for dent and Congress on issues affecting Women with Disabilities - Americans with disabilities. Human Services Research Institute http://www.prodworks.com/ilf/ (HSRI) - http://www.hsri.org This is a continuing information web The National Organization on Disabil- HSRI works to develop support site. The purpose the forum is to create ity - http://wwwnod.org systems for children, adults, and families, an international support network with The National Organization on and enhances the participation of an emphasis on technical assistance for Continued on page 21 PAGE20 250TASH Newsletter, October 1998 CENTERgli.4DNHUMAN POLICY
INTERNET RESOURCES expand opportunities that enhance the a disability or medical issue. Continued from page 20 quality of life for children and young adults with all disabilitiesphysical, mental, emo- Training Resource Network (TRN) Disability promotes the full and equal tional, learningand their families. http://www.oldcity.com/trn/ participation of America's men, women Publisher that offers resources on the and children with disabilities in all The Oaks Group - http://www.jps.net/ full inclusion of people with disabilities aspects of life. wcoffelt/oaks.html in their communities, especially on the The Oaks Group is a value based topics of supported employment, person- The National Home of Your Own stakeholder organization whose members centered planning, supported living, and Alliance - http://alliance.unh.edu believe persons with developmental self-determination. The National Home of Your Own disabilities should be fully included in Alliance is a partnership between the the mainstream of community life, that Uppity DisAbility Internet Resources - Federal government and nationally children should have the opportunity to http:llgandalf.umcs.maine.edulas1/ recognized advocates and leaders whose grow up in families, and adults should upmain.html goal is to create housing and support receive the help needed to live as close as "Socially progressive site for like opportunities that people choose and possible to the way people without minded disAbled people." control. developmental disabilities live. World Institute on Disability (WID) National Parent Network on Disabili- On A Roll - http:ll http://wwwigc.apc.org/wid/ ties (NPND) - http://www.npnd.org/ www.onarollradio.com WID is an international public policy NPND was established to provide a The only commercial, syndicated center dedicated to carrying out cutting- presence and national voice for parents of radio talk program for the disability edge research on disability issues and over- children, youth, and adults with special community. coming obstacles to independent living. needs. Society for Disability Studies - http:// National Rehabilitation Information Cen- www.wipd.com/sds/ ter (NARIC) http://www.cais.net/naricl The Society for Disability Studies Thanks to Mair Hall, Perri NARIC is a library and information (SDS) is a nonprofit scientific and Harris, Pam Walker, Steve Taylor center on disability and rehabilitation, educational organization composed of David Wetherow, and Bill Coffelt for and collects and disseminates the results social scientists, scholars in the humani- their comments and suggestions on of federally funded research projects. ties, disability rights advocates, providers, previous drafts of this article. and agency personnel concerned with The preparation of this article New Mobility Magazine - people with disabilities. was supported by the Center on http://newmobility.com Human Policy, School of Education, "Disability is news, art, politics, TASH http://www.tash.org Syracuse University, through a humor, healing, recreation, travel, show- Formerly The Association for subcontract with the Research and biz and rehab-biz, and that's what we do." Persons with Severe Handicaps, TASH is Training Center on Community an international advocacy association of Living, University of Minnesota, Northamptonshire People First - people with disabilities, their family supported by the U.S. Department of http://www.peoplefirst.org.uk members, other advocates, and profes- Education, Office of Special A self-advocacy organization from sionals working toward a society in Education and Rehabilitative the United Kingdom of people with which inclusion of all people in all Services, National Institute on disabilities speaking up for themselves. aspects of community is the norm. Disability and Rehabilitation This site includes links to several other Research (NIDRR), through self-advocacy organizations. Through the Looking Glass (TLG) Contract No. H133B980047. http://www.lookingglass.org Members of the Center are encour- Not Dead Yet - This is a community, non-profit aged to express their opinions; http://www.acils.com/NotDeadYet/ organization which emerged from the however these do not necessarily Not Dead Yet is a national activist disability independent living movement represent the official position and organization which opposes the legaliza- and whose mission has been to create, NIDRR and no endorsement should tion of physician-assisted suicide and demonstrate and encourage resources be inferred. The Center on Human places emphasis on the value of life. and model early intervention services Policy subcontracts with TASH for which are non-pathological and empow- space in this Newsletter Parent Advocacy Coalition for Educa- ering. TLG has pioneered clinical and tional Rights (PACER) Center http:ll supportive services, training and research www.pacer.org/ serving families in which one or more PACER's mission is to improve and memberswhether parent or childhas f. PAGE 212 9 I. TASH Newsletter, October 1998 ESCAPING FROM THE LABEL TRAP r 1C(t;11 1°. \is 101.0 % U. ." "771: TRAP I.
BY MICHAEL W. SMULL We need to start with the individual w- hile we talk about supporting people, our rather than the program and to listen practice is to place people. We group people to what the individual is asking for rather who have the same labels into the same homes. than simply looking at what exists. We determine who is "ready" for work or a smaller living setting based on performance assessments that For the disability system the challenge have little to do with the real requirements for a job or another is to learn what must be present or absent place to live. Often, pay lip service to preferences and desires but in each setting for each individual. do nothing to meet the modest requests that people are making. We need procedures that help to lift us out As was noted in a 1990 publication on independent living: of our habitual patterns of thinking and "(People with developmental disabilities) are no less provide us with an alternative structure. independent than young urban professionals who are too busy to do for themselves... We do not hear reports of executives who are unwilling (or unable) to prepare their own meals being material, but we could call them athletes. forced back into their parental homes, or to live in congregate Having solved the problem of selecting dorms and room- arrangements." (Lozano, 1990) mates we would turn our attention to the next issue, that of To illustrate the absurd nature of the decisions we make in choosing major areas of study We know that freshman really do our program model let us see what would happen if we applied not know what they should study Instead of the inefficient it to college students. If the disability system ran the university process of having freshman pick majors and change majors, we the first thing that we would change would be how people are would simply review the SAT results and select the area where housed. Freshman would be assigned roommates, floors, and they demonstrated the poorest performance. We know that dorms based on SAT scores. We would have separate dorms for what is important is remediating deficits. This will also make each of these groups: course registration more predictable as many seniors will still be failing the same courses that they began taking as freshman. The next issue where we can be of assistance to college administrators is in the area of behavior. Freshmen are notori- SAT Score Classification ous for the frequency and severity with which they exhibit 1600 - 1451 Profoundly Clever maladaptive behaviors. It seems that all of the behaviors that 1450 - 1301 Severely Clever parents had suppressed for 18 years emerge during the freshman year. Colleges have attempted to tolerate all but the most 1300 - 1151 Moderately Clever outrageous of these behaviors. As the disability experts running 1115 - 1001 Mildly Clever the University, we can do better. Freshman will have to earn points in activities of "daily university living" (in areas such as 850 Borderline Clever 1000 - personal hygiene and dorm room maintenance) in order to have privileges such as having pizza delivered to their rooms. Where we face more challenging behaviors, we can make attendance at While each dorm would be required to be restricted to one football and basketball games a contingent reinforcer. We can group, e.g. the severely clever, within the dorms roommates introduce the idea of the IDP (Individual Dorm Plan) and revolu- would be within 15 SAT points of each other. We would debate tionize the management of the behavior of college students. whether those in the "borderline clever" group are really college Continued on page 23
PAGE 22 '2!)2 TASH Newsletter, October 1998 ESCAPING FROM THE LABEL TRAP
LABEL TRAP determine the settings in which they would choose to live, work, Continued from page 22 and play We need to start with the individual rather than the program and to listen to what the individual is asking for rather Where students have roommates that they do not like (despite than simply looking at what exists. For the disability system the our scientific method of matching) we have the answer. The old challenge is to learn what must be present or absent in each method of simply allowing students to select and change roommates setting for each individual. We need procedures that help to lift at will is appallingly inefficient. We know that there is no real neces- us out of our habitual patterns of thinking and provide us with sity to change roommates. With our technology we can introduce an alternative structure. behavior programs and structured interactions. We will not need to We must avoid perverting the provision of support services. allow students to change roommates simply because they want to. We have been so seduced by labels that we re-label programs We will not listen to the students who say that this means that they with support names and believe that we have achieved our goal. have to spend more time with people that they hate. When people are simply assigned supported employment jobs If we were to actually attempt such a system in a college (without choice), when supported living only means that we put setting it would only be a matter of days or weeks before the the lease in the name of someone with a disability who has not students rose up in revolt. People with disabilities have been chosen where to live or who to live with, we have not changed more tolerant. They have largely accepted our practices. Where the way we think about people with disabilities. We must individuals have objected they have been the subjects of power- redeem our promises. ful interventions for "maladaptive behavior." To keep the promise of supported living and to redeem the promise of Reprinted with permission of the author supported employment we need to not only change our practice This article first appeared in an issue of AAMR News & but to change the way we think. Notes.Michael Smull may be reached at Support Having agreed that we need to look beyond labels, we need Development Associates, 301-564-9572; help in escaping from our label trap. We have conditioned e-mail
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PAGE 24 TASH Newsletter, October 1998 CHANGING THE NEWS ABOUT DISABILITY
ness" run amok, the example that was Changing the News used related to disability This had been going on since the early 1990s. Writers who wouldn't dare about Disability: ridicule racism, sexism, anti-Sexism or "homophobia" lampooned political correctness by ridiculing disability terms. "What editor could resist the tale Whyweneed to of academic orthodoxy in which cracked rules of civility require short people to be referred to as the vertically chal- and how to do it lenged?" wrote Anthony DePalma in the September 25, 1991 New York Times. Chicago Tribune columnist Joan Beck BY MARY JOHNSON chose "ableism" for her prime example of what's ridiculous about political As. sat down to read our correctness. She called it "a spoof of Sunday paper recently, my eye Controversy increases the itself." caught the headline across the "People who are politically correct top of the Metro section: chances of your issue are pushing 'differently-abled,'Sol "Racial slur painted on city building." I getting couered. A protest, a Steinmetz, Executive Editor of the read on. The word "nigger" had been Random House Webster's College spray painted on a government building demonstration, a lawsuit, Dictionary told the New York Times's in one of our community's small, incor- charges of bias made by your Richard Bernstein. Differently-abled,' porated cities and the word had remained wrote Newsweek's Jerry Adler, "is a 'term there a month. An official said the work group against an institution created to underline the concept that order for removing it had "slipped (such as the entertainment differently-abled individuals are just through the cracks." that, not less or inferior in any way' The mayor of the city of Hillview industry) are always more Well, many people with handicaps told the reporter he hadn't been aware of interesting to reporters than surely do develop different abilities, but the vandalism "until a civil-rights that is not what makes them a category. activist, the Reverend Louis Coleman, "positiue" stories. It's just a They lack something other people complained about it yesterday" The fact of life. Howeuer, possess. It does violence to logic and to story went on to report that the graffiti language to pretend otherwise. If people had been promptly removed after controversy must haue could choose, how many would be Reverend Coleman had complained. substance. 'differently-abled?' Knowing what I did of Reverend Using racial epithets was wrong; Coleman, I knew he'd also called the everyone knew that. But disability local media to tell them about the story. issues are still not seen by the media as What was the result of these efforts? The serious issues in the same way as racial story led the top of the Metro section of offensive to the blind 'if you don't tell issues, or issues of discrimination our Sunday newspaper, a newspaper them,' a laughing Kuhn said." against women or gays. with a circulation in the millions. A few hours later, I found I was still Before the 1980s, there was only Glancing over the Metro section, my fuming. The incident about the racial sporadic coverage of the disability eye fell on another article: "Seriously, epithet had been taken seriously by movement and its issues. The media laughter is beneficial, doctor says," read the Reverend Coleman and by the wrote about "courageous cripples" who this headline. The story reported on a newspaper. Racial issues thanks in overcame their disabilities, much the speech to a local group given by Dr. part to Reverend Coleman's activism same way that an earlier generation of Clifford C. Kuhn, a professor of psychia- were taken seriously by our local media. reporters had written about Negroes try at the University of Louisville's But the story about the pirate's costume who were "credits to their race." Or they medical school. Skimming the story, I reminded me how far we still had to go. wrote about tragic cases of "poor read these lines: "He said political The pirate's costume story was being cripples" who needed help to get a correctness has been taken too far, citing used by this respected professor of wheelchair or a brace; stories that were the example of a Halloween costume that psychiatry to show how people are often smaller versions of the telethons. included a pirate's mask with a patch over "too sensitive"; too "politically correct." During the 1980s, as people with one eye that was called offensive to blind It seemed that whenever someone disabilities began to push seriously for people. The costume would not be wanted an example of "political correct- Continued on page 26
PAGE 2529 5 TASH Newsletter, October 1998 CHANGING THE NEWS ABOUT DISABILITY
Changing the News about with handicaps be able to function as if If your group filed a lawsuit two Disability they did not have them is simply not weeks ago against the state for failing to comply with the Americans with Dis- Continued from page 25 attainable." The views expressed by Rooney, The abilities Act, it's "old news" to the media. New York Times and the Washington Post Reporters will wonder why you waited were echoed again in the early 1990s in two weeks. They won't cover the story The view that the desires of an all-out attack by right-wing Manhat- Timeliness is one of the most important tan attorney Philip Howard, whose 1993 keys to getting coverage. Reporters need people with disabilities best-seller, The Death of Common Sense, to know about the lawsuit, and the for access is silly at best, and wrote that "the handicapped" were "why" behind it, well before you filed it. ruining America with their incessant If you picketed an inaccessible restaurant selfish and wrongheaded at demands. The view that the desires of yesterday, local media won't be able to do worst, has been the consistent people with disabilities for access is silly a thing for you in terms of coverage. You at best, and selfish and wrongheaded at must tell them in advance. viewpoint in the press...and is worst, has been the consistent viewpoint Controversy increases the chances of growing stronger It is against in the press since then and is growing your issue getting covered. A protest, a stronger. demonstration, a lawsuit, charges of bias this backdrop of hostility It is against this backdrop of hostility made by your group against an institu- surrounding disability issues surrounding disability issues in the tion (such as the entertainment industry) national media (that often trickles down are always more interesting to reporters in the national media (that to local news outlets) that we must look than "positive" stories. It's just a fact of often trickles down to local at our own efforts to gain media atten- life. However, controversy must have tion. substance. If you can't back up your news outlets) that we must Stories which focus only on indi- charges with proof or substantial evi- look to our own efforts to gain viduals, but which do not further the dence on your side, then you simply lose agenda for more accessible housing, the media's interest. For example, if you media attention. compliance with the Americans with charge a film producer with bias, you Disabilities Act, attendant services, and need to be able to explain specifically so on, persist because most journalists what about the movie makes it biased (is don't know that there are important it the casting? the story itself? the civil rights and as some of the effects of disability issues that they should be language? the way the person with the the Rehabilitation Act and the Education covering. If asked why they don't cover for All Handicapped Children Act disability rights issues, reporters and provisions began to take root, a new tone editors may say that such issues affect crept into reports about people with only a small minority; that they don't Remember to keep the disabilities. Andy Rooney, complaining have an impact on their broader audi- issue simple. Focus on things about violinist Itzhak Perlman's cam- ence. We know they're wrong. But what paign to make Carnegie Hall accessible, they're really saying is that, to them, like access denied, civil rights, wrote "No one is against the handi- these experiences seem like individual the moral rightness of capped...but we cannot make life problems; they're not issues that affect normal for people who have bodies that the whole of society. integration. These are do not work properly" Rather than trying to generate our common themes most The New York Times opposed making own stories that do not seem "newswor- subways accessible to people that use thy" to editors, a way to change the people understand today. wheelchairs using very similar language. public debate around disability issues is Disability rights is a very "The first object of a wise but concerned to do what Reverend Louis Coleman and policy cannot be to make people with his civil rights group do: they focus on simple and moral concept. serious disabilities move as if they did broad-based issues in the news, pointing Don't make it complicated not have them," read its Jan. 3, 1984 out the racism. When the University of editorial. The Times was echoing an Louisville planned a new football or academic. editorial in the July 1, 1982 Washington stadium, Coleman raised to the media Think about explaining your Post, in which it complained that "deaf the issue of minority contracts in the Amy Rowley" had no right to an inter- construction. This is how Coleman has issue to the average person preter in a regular classroom. "There are gained credibility in the local media. on the street. limits to what society can afford, limits When Coleman calls news reporters now, which suggest that the goal of some they listen. That's because he's been handicapped rights groups that people persistent. Continued on page 27
PAGE 26 TASH Newsletter, October 1998 CHANGING THE NEWS ABOUT DISABILITY
Changing the News about issue to the average person on the Disability street. And think about issues that can Continued from page 26 Wheneuer we begin "re-frame the debate" AWAY from the planning to get coverage of viewpoint that people with disabilities are simply malcontents who "want too disability is portrayed?). If you can't some euent or issue, we much." You can show how an inclusive substantiate your allegations, you will be must ask ourselves: will the society benefits us all. branded as a group that "doesn't know None of this strategizing will help, what it's talking about." Be controversial, coverage we are seeking help however, if your issue isn't clear and but do your homework! "frame the debate" on current focused, and if you don't have your facts Whenever we begin planning to get easily accessible for reporters. By coverage of some event or issue, we must issues that affect our lives? disciplining yourself, doing your ask ourselves: will the coverage we are Will this coverage further our homework and providing clear, explana- seeking help "frame the debate" on tory materials, you can make it easy and current issues that affect our lives? Will agenda on issues like simple for reporters, editors and this coverage further our agenda on attendant seruices or producers to understand why a story is issues like attendant services or enforce- newsworthy, and what the angle is. ment of the ADA? enforcement of the ADA? Do this enough and you'll begin to There is nothing better than finding instinctively learn what kinds of things a disability rights angle to a big, breaking reporters and their editors consider news story on any issue to propel newsworthy. When you want to get disability issues into the news in a way find the newsworthy angle and hooking a media coverage, push similar angles. If that makes disability rights seem impor- reporter or assignment editor with it. You the reporter becomes interested, you tant to societyCalling the reporter can learn what angles can "hook" the will need to have many more facts at responsible for the "hot" news story, and reporter you're targeting by reading how hand, and be prepared to give the presenting a disability rights "spin" on the newspaper covers stories. Watch TV reporter all the information he/she the issue is a good way to inject a news broadcasts and listen to local radio needs. You will need to have other disability rights issue into the news in a news shows. As you follow the daily sources to refer to the reporter. You will way that makes it seem important to a news, get into the habit of analyzing need to have lined up individuals broad range of people. Doing this also stories about organizations or issues affected by the issue who can talk to the gives you a chance to "frame the debate" which you think do get good press reporter about how the issue has played from a disability rights perspective. coverage, Ask what angle is being out in their lives, and point to disability Reporters don't have time to digest a covered in this story. Why is this angle rights movement sources who can lot of material. The news business runs considered newsworthy? What isn't discuss the issue. Remember: you can on tight deadlines; things have to be being covered? Why not? Can I figure re-frame the debate if you plan, if processed fast. If an angle is complicated out why a reporter chose to cover one you devote time to it, and if you use or requires a lot of digging, a reporter angle of a story to the exclusion of your resources well. may simply ignore it. Even if it meets others? other criteria of newsworthiness (for Take notes on index cards. Record example, if it's really controversial), a which reporters cover which issues reporter won't give your angle much regularly. Note what "angles" they use Mary Johnson is Editor of Ragged attention if it isn't presented clearly and frequently Study your notes before you Edge magazine, and co-author of simply. That's your job. contact the reporter, so that you know Take a hint from USA Today. Most of their approach and can "speak their the book Making News: How to get their stories are very short and to the language." If they aren't interested, news coverage for disability rights point. Pick up a copy of the newspaper don't get discouraged. Part of what issues, available for $10.95 from for a week or so. Study what's in each you're doing is establishing a relation- The Advocado Press, PO. Box 145, story. Notice in particular how the story ship, letting reporters know your group Louisville, KY 40201. To contact starts - that is, how the lead paragraph is is out there with story ideas. Ragged Edge magazine, write PO. written. Write your angle as if it were a Remember to keep the issue simple. Box 145, Louisville, KY 40201, or USA Today story. Make it fit on one page. Focus on things like access denied, civil Get the most important information in at rights, the moral rightness of integra- visit Ragged Edge's website at http:/ the top. Hook the reporter in the first tion. These are common themes most /wwwragged-edge-mag.corn sentence. people understand today. Disability Work on this technique with others rights is a very simple and moral in your organization until you are all concept. Don't make it complicated or comfortable with figuring out how to academic. Think about explaining your
PAGE 27297 TASH Newsletter, October 1998 SPEAKING OUT AGAINST AVERSIVES A Self-AdvocateSpeaksOut A ainstAv
BY MICHAEL KENNEDY WITH DOUG BIKHN ersivesA AAAA
WhenI was in Rome (a this stuff (the abuses, the use of re- want to go because he didn't feel well. He New York State institu straints) because they figure if I watch it, got so upset because he didn't feel well. He tion that is now closed), I I'll shut up and won't say anything. But needed medication for an upset stomach saw a lot of people who I what it did to me, it made me speak out or whatever it was. They wouldn't listen to had lived with given drugs to keep them stronger on behalf of other people with him, so he got so mad that he ended up passive. If that didn't work, the staff would disabilities because somebody had to take hitting one of the staff. Because he hit one use restraints. Using a straightjacket, they that step and go forth, even though I of the staff, they locked him up. tie you up and put you in a room that is knew that I was putting my life on the I said to the nurse who came that if padded. There was nothing there but a line. Somebody had to speak up. When you take him down to the doctor's office, little window. You couldn't see out, but staff are drugging people and tying them he could probably write on a piece of they could see in. They would leave you up it's because the institution allows it. paper that he doesn't feel well. So they in there for three, four hours, sometimes One staff person punished me for took him down there and the doctor for two days. There was no furniture and turning him in. He pulled my right hip examined him and he had an upset no toilet. Usually people would end up right out of the socket. I live with that pain stomach because he had the flu. But the going to the bathroom on themselves all my life. In order to get it fixed, they'd only way that he could get somebody's because they couldn't get nobody's have to put in a plastic hip and they don't attention was to act out like that. It's a attention to take them to the toilet. know if that would work. Any anyway, I shame that you've got to act out just to tell Another punishment was "the table." can't afford to be out of work. I'd be out at somebody that you are not feeling well. It was like an examining table, but they least six months to a year. That was the The mentality of the staff was: would strap you down on it and they'd result of me turning somebody in for "They're (the residents) disabled, they're leave you on the table in a room for hours. physically abusing people. retarded, so they don't know how they The room was white and had florescent At Rome I watched people, the feel." That was the mentality. lights in it. Every once in a while they residents, when they are not upset and Even though today it's gotten better, would look in the window or unlock the trying to get their point across about a still there seems to be the mentality where door and look in. Why they would lock certain issue going on in their life and some people who work with people with the door I'll never know, because you can't nobody is listening. As soon as they get disabilities just see them as that disability get out once you are strapped down. Then upset, then you've got everybody coming and nothing more. And they focus on after a while they would come and take from all over. You've got security coming, what we can't do rather than what we can you out and they would say, "Well, have you've got the nurse coming, you've got do. They don't stop to think that it could you had enough?" or "Are you going to somebody coming with a straightjacket. be their son or daughter. behave now?" Or they'd make a snide It's like a domino affect. If one person One of the biggest things is that they comment like, "Well if you do this again, sees another person getting upset, then don't look at us as individuals who have you're going to be right back here." they get upset, too, because they are feelings, wants, and desires like every- And it's like you could see what the concerned about why nobody is trying to body else. These doctors, nurses, and person (who had been punished with find out why [the first person] was upset. other staff don't take the time to get to these restraints) was feeling and they I'll give you one example. I lived on know you because in the institutional wanted to say: "if you had listened to me this one unit with this fellow in Rome setting, and even in the group home, about what's going on I wouldn't be acting and one day he got up and he wasn't there is so much turnover. So how do out in the first place." You could see it on feeling well. He tried to tell the staff that they get to know you? The institution was their facial expressions. At least I can. and they said, "well, you've gotta go to always shifting staff from unit to unit to The staff made me watch some of your day program, just go." And he didn't Continued on page 29 298 PAGE 28 TASH Newsletter, October 1998 SPEAKING OUT AGAINST AVERSIVES
SPEAKING OUT AGAINST UNLEASH THE POWER IN II AVERSIVES Continued from page 7 With professionals, Continued from page 28 Baltimore Sun. Although we needed to self-advocates, and families as tell our caregiving problems to get our partners, we've come this far point across, my favorite article was the beyond where we ever dreamed. One of my advocacy positive one in the Sun - with the picture of the Governor smiling and shaking my Who can stop us now?! dreams is to do away daughter's hand. with aversives. If I had one After the press conference our strategy dream it would be that people focused on legislators on the money priorities and parameters for how the committees who needed to approve the money is spent. DDA directors and other can get the help they need DDA budget before it went to the full professionals make up the implementa- without getting hurt. legislature. During February, we solicited tion team, which also gives input.Final champions and asked them for help and decisions are made by Diane Coughlin. suggestions. For those we were unsure of, Throughout May, DDA officials 121118.011111111.1111.5. we descended on their offices with invited all Waiting List families to regional constituent families. Additionally, since meetings to explain the Initiative, its unit, so they couldn't get to know what a we knew that decisions would be made by guiding principles, what had been person's likes and dislikes are, what makes the beginning of March, we planned our decided, and what would happen next. them feel good, what makes them sick. Day at the Legislature for late February By the end of August, service coordinators For those who still believe in The Governor spoke, and a couple of will have met with everyone on the aversives, I have to ask, do you really care hundred people fanned out to visit their Waiting List to begin the person-centered about people, are you a human being? legislators and reinforce our message. We planning process. What a daunting task! Because if you don't want to try any other also crowded the room of the Senate For me, what this has always been way to learn to communicate, to hear budget committee hearing, where we set about is the families, all the wonderful people's desires and fears and so on, if all up our "FACES" display as we had at the people I met throughout the year. We told you can do is use aversives, I have to ask House hearing a week before. At the same them that if they unleashed what I call are you a human being? My answer in time, we kept those letters coming. "people power," they couldn't lose. But my own mind is no. If you were a The upshot of the saga is that the underneath I was always afraid that, when human being, you'd ask and try to explore DDA budget sailed through the budget it came down to the end, we might have to the best way that individuals understand. I committees and, in early April, the full compromise and let them down. That will say that in some ways it's gotten better, legislature approved it without a hitch. didn't happen. As we promised, for resi- but I won't say they don't still do it. We have our Initiative, set out as a five- dential supports everyone who has a One of my advocacy dreams is to do year plan. But we mustn't forget that caregiver 55 or older as of January 1, 1998, away with aversives. If I had one dream it funds have officially been approved for will get services within the five years. would be that people can get the help only one year. We can't sit back, espe- We have a challenge ahead of us to they need without getting hurt. cially with elections coming. We need to serve so many people in such a short time keep the grassroots activated and and adhere to our principles. Everyone Michael J. Kennedy may be con- continue our behind-the-scenes negotiat- working on this Initiative is committed to tacted at the Center on Human Policy, ing to make sure everything doesn't come using this wonderful opportunity to not Syracuse University, 805 South Crouse crashing to a halt in 1999. Moreover, only serve as many people as possible, but Avenue, Syracuse, NY 13244-2280 or we'll have to look beyond the five years to serve them well and in new and you may call (315) 443-4336 or e-mail to ensure that, because of foresight and exciting ways. With professionals, self- [email protected] planning, we preclude another backlog. advocates, and families as partners, we've Doug Bilden may be contacted at But while we remain vigilant, we are come this far, beyond where we ever the Cultural Foundation of Education, moving forward with the challenge of dreamed. Who can stop us now?! Teaching & Leadership, Syracuse Uni- implementation. By February, before the versity, Facilitated Communication Initiative passed, DDA began planning. Joyce Lipman is President of The Arc of Institute, 376 Huntington Hall, Syra- Maryland and Waiting List Campaign cuse, NY 13244-2280; (Phone) 315- The Director hired Kathy Perkins to oversee the implementation process. She Chair The Campaign Coordinator, Sue 443-2699; (Fax) 315-443-2274; (e- Dotson, is the wife of TASH's Information mail) dpbilden@syredu; or visit the is working with an Advisory Committee Systems Specialist, Dan Dotson. For more Facilitated Communication Institute's made up of advocates, a service coordina- information on Maryland's Waiting List web site at http://soeweb.syr edulthefci tor, a self-advocate, and providers. Campaign, contact Waiting List Watch do Representatives of The Arc are part of The Arc of Maryland at 410-571-9320. that team. We have had exhaustive 3- f. hour-long weekly meeti 5(egit /IS TASH Newsletter, October 1998 REST COPY AVAILABLEPAGE 29 OCTOBER 1998
The Special Education Service Agency-Anchorage, Alaska SESA currently has a vacancy for an Education Specialist in the following specialty area. For more information about our organization, visit, our website at http://wwwsesa.org. Education Specialist - Multiple/Significant Disabilities Provide technical assistance and consultation to educational teams working with students with the following disabilities: autism, moderate/significant mental retardation, orthopedic impairments, other health impairments, traumatic brain injury, and/or multiple disabilities in rural/remote Alaskan school districts. Minimum Qualifications (1) Master's degree in education with an emphasis on one or more of the disabilities listed above; (2) Minimum of three years recent experience with this population; (3) Qualify for Alaska DOE Special Education Type A (teacher) Certification; (4) Demonstrated knowledge and skill levels in current "best practices" in the educat on of students with multiple/significant disabilities; (5) Current knowledge of assistive technology options for students; (6) Ability to work collaboratively with team members; and, (7) Excellent health and the ability to travel extensively and independently in rural/remote Alaska. Preferred Experience Direct experience with students with multiple/significant disabilities across age rangespreschool through high school and various ability levels; Providing training to professionals and/or paraprofessionals; and Inter-agency networking and collaboration.
Contact: John Lund, Program Administrator Special Education Service Agency 2217 E. Tudor Road, Suite 1Anchorage, AK 99507 (907) 562-7372 Fax: (907) 562-0545 e-mail: [email protected]
INCLUSION PRESS Upcoming Events
Creative Facilitator Course. Learn creative tools for teams and for change such as:MAPS, PATH, Solution Circles, Six Thinking Hats, Graphic and Process Facilitation and more!
January 27-30, 1999 in Toronto (limited to 35 participants)
Design for Change. Something totally new for people who really want to change their organizations. Open only to people who have been involved with MAPS and PATH and have participated in The Summer Institute, The Creative Facilitator or other events with Jack, Marsha and John.
February 24-27, 1999 in Toronto (limited to 20 participants)
+ And don't forget The 1999 Toronto Summer Institute on Inclusion, Community and Diversity A unique one week Learning Marketplace experience featuring an international faculty team. An experience in learning and living you won't soon forget.
July 3-9, 1999 in Toronto (limited to 125 participants)
For information on any or all of the above events, contact: Cathy Hollands or Marsha Forest and Jack Pearpoint, Inclusion Press, 24 Thome Cres., Toronto, Ontario M6H 2S5 Canada. Telephone: 416-658-5363; Fax: 416-658-5067; E-mail: [email protected] or check out Inclusion Press's web site at http://Inclusion.com
PAGE 30 3 0 0TASH Newsletter, October 1998 IDEA RALLY
and action designed to issue a directive to White House Associate Director of Realize the Promise public policymakers that the implementa- Disability Outreach; Wilson Buswell and On a radiant fall afternoon in tion and absolute enforcement of IDEA Aaron Flint, national student leaders from Washington, D.C., several hundred must become a reality The event was a Colorado; Elisabeth Healey, elected parents, children, disability rights collaborative effort organized by national member and Past President of the Pitts- advocates and others gathered on the parent and advocacy groups, including burgh School Board and current President Ellipse near the Capitol to protest the TASH and MAIN (The Mighty Alliance for of the TASH Board of Directors, and many lackluster and in many instances, non- Independence Now). Speakers included others.Greg Smith, host of the nationally existent enforcement of the Individu- several internationally known disability syndicated radio talk show "On A Roll", als with Disabilities Education Act activists such as Justin Dart, 1998 Presi- served as master of ceremonies. (IDEA). Rally participants complained dential medal of Freedom recipient; TASH The rally culminated in a march from that students with disabilities continue to Board member Mike Auberger, co-founder the Ellipse to the Capitol where lawmakers receive education in public schools that is of ADAPT; Janine Bertramkemp, activist were still in session trying to pass a budget of poorer quality than their counterparts and widow of disability rights pioneer, bill before adjourning for the year.Rally without disabilities. Evan Kemp, Jr., Sarah Jacobs, who participants presented a signed petition at Sunday, October 11th was billed as "A delivered a special message from Vice the Capitol demanding that policymakers Day to End Special Segregation," a rally President Al Gore; Jonathan Young, implement and enforce IDEA.
Rally participants marched from the Ellipse to Capitol Hill
ei
Greg Smith (far left) of the nationally syndicated radio talk show, On A Roll, served as Master of Ceremonies.
(jsqJL .147 /41,1"7/41 I(
Younger rally participants got a chance to enjoy life- size cartoon characters.
.1:111., End Special Segregatwn Now! 411111111
TASH Board member Mike Auberger was one of the day's outstanding speakers.
Yoshiko (1) and Justin Dart
PAGE 31 TASH Newsletter, October 1998 Q TASH NEWSLETTER 0ct" Prise Ila Newton, Editor Policy Statement Executive Board 2 It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee 0 Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director Kathy Boundy judgement in selection of materials. Barbara Buswell All contributors and advertisers are asked to abide Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
MEMBERSHIP INFORMATION
Referred by: Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ 0 work address E home address college/library/school $200. (allows 3 conference attendees at 0 other the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant ( ) Administrator/Adult Services (for whom payment of full fee would present a hardship) $45. () Administrator/Education Family (group rate) $136. ( ) Administrator/Other Lifetime Member $1000. ( ) Adult Service Provider/Staff Add $10 for postage costs for members in Canada () Behavior Specialist and $25 for members outside the U.S. and Canada. () Case Manager ( ) Early Childhood Services Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 pro- () Educator/Teacher cessing fee if check is not drawn on a U.S. bank. () Gov. Personnel (Federal, State, Local) If you would like to charge your membership, () Interested Individual/Advocate/Friend please fill in the necessary information: ( ) Legal Services Provider () Mastercard ( ) Visa () Discover ( ) Occupational/Physical Therapist Card Number ( ) Parent/Family Member Expiration Date ( ) Personal Assistant Signature () Professional Public Policy Advocate ( ) Professor/Instructor (College/University) () I would like to spread my payments out. () Psychologist Enclose 1/3 and you will receive 2 additional ( ) Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, ( ) Related Services Provider please provide the following information: () Self-Advocate Department ( ) Social Worker College/University ( ) Speech/Language Pathologist Student I.D. Number () Special Education Teacher/Support Anticipated year of completion Specialist ( ) Staff Development/Trainer () Include an additional $15 if you are applying ( ) Student (College/University) for an individual membership or $30 if you are ap- plying for an organizational membership and also () Supported Employment/Day Personnelwant to become a member of your local chapter. ( ) Other Please make check payable to: TASH Moving? Address: 29 W. Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274 Fax: 410/828-6706 302 \ r -
VOLUME 24 ISSUE NUMBER 11/12 NOVEMBER/DECEMBER 1998
A SO
era Oversi
2 fi VIEW FROM A BOARD MEMBER
TABLE OF CONTENTS View from a From the Executive Director Page 4 BOARD MEMBER Supporting People with BY TIM KNOSTER AND LINDA RAMMLER Disabilities Page 5 It iswith mixed emotions that we provide Herb's presence and contributions within this preface to this particular Newsletter in and outside the TASH community Who Will Be Herb memory of our friend and colleague, Herb While it is not possible in this limited Lovett Now? Page 8 Lovett, Ph.D. The reason for our sadness space to go into sufficient detail as to all of is clear as we, and countless others, the ways Herb has influenced our Herb Lives in Los Angeles Page 9 continue in our efforts to come to terms thinking, we have provided a snapshot... with Herb's death. Ironically, at the same sound bites if you will .. as tothe Radical Heart, Moderat Mind: time we are elated about the focus of this impact Herb has had on our lives, the A Perspective on Inclusion ... Page 16 Newsletter aseach of us continue to feel field of disabilities, and society at large.
A Tribute to Herb Lovett Page 21 "Tryingto distill the impact that Herb has had on the field into a few brief statements is What's Wrong somewhat like trying to interpret Dichen's A Christmas Carol by simply saying that we can with the Feds? Page 24 all change for the better when we listen with our heart. On a personal note, I most miss Herb's fast, and at times lashing out, sense of humor While I came to expect a variety of interesting comments from Herb, he never failed to catch me off guard on more than one occasion. In the larger scale of things, Herb's insights on the relationship among science, TASH (formerly The Association for Per- politics, and the human condition have had and will likely continue to have a lasting sons with Severe Handicaps) is an inter- impression on the field. In particular; Herb's teachings have helped me to better understand national advocacy association of people how technologies can never; and should never, become the exclusive focal point of our efforts with disabilities, their family members, in supporting people who present challenging behavior Or, as Herb would say "the criterion other advocates and people who work also about how we stay with people while they in the disability field. TASH actively pro- for success is not just about results... it is motes the full inclusion and participation change and grow." Tim Knoster of persons with disabilities in all aspects Continued on page 3 of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 108 or e-mail: infogtash.org. Whom Do I Contact?? 11 For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at MISSION STATEMENT (410) 828-TASH, Ext. 101, e-mail:[email protected] For information on conferences, regional workshops, or technical assistance, fAsTASH call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828-TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible For questions about the 1998 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Building communities in which no one is segregated and everyone belongs; For questions about membership, conference registration or exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on government affairs or fundraising/development, call: Marcie Roth, Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, Advocating for opportunities and rights; e-mail:[email protected] For information on marketing and promotions, permission and reprints, news- Eradicating injustices and inequities; letter submissions and advertising, or publication sales, call: Priscilla Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, Supporting research and disseminating e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable.Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 394TASH Newsletter, Nov./Dec. 1998 VIEW FROM A BOARD MEMBER
VIEW FROM A BOARD MEMBER Continued from page 2
"After several attempts at "Other than listening to Herb speak at various conferences, I never knew Herb previous TASH conferences to hear personally. Yet he managed to challenge my thinking and beliefs perhaps more than Herb speak but failing to get near the any other colleague. At times he infuriated me. Most of the time he frustrated me door, I sat through a session in which I as I failed to understand or to be open to the meaning of his messages.I had had absolutely no interest but it difficulty grasping how supports for people with complex needs could be translated happened to precede Herb's session, into "listening" and "nonhierarchical relationships." But life is filled with personal guaranteeing me a seat. Herb was not ironies and important lessons. For me, one irony became apparent as I neared a "topic" person like so many of us. completion of a qualitative study that explored the experiences and perceptions of He embodied the soul of what drives teams who supported adults with significant behavioral challenges in community worthy disability advocates. He spoke settings. As noted by a few of my colleagues, I went into the project describing about people with disabilities with supports in terms of technological interventions and came out 'sounding like Herb unmatched respect and held them in Lovett!' It's not that I now reject systematic interventions. Rather, I've broadened such an honorable light that I'm not my perspective. I've come to understand the importance of personal relationships sure anyone can follow in his footsteps. how trust, mutuality, and the willingness to be open to another's needs appear to be He didn't just speak about the the driving force behind truly meaningful and effective supports for people who have importance of community, he cher- been devoid of close personal relationships in their lives.I now understand, as ished it for the struggles and the emphasized by Herb, the significance of relationships as both the context and celebrations that make it strong.I am primary goal of positive supports." proud to have known him." Linda Bambara Donna Gilles
"They say that you are only a true expert when you can influence change in your own backyard. A large backyard New England is, but Herb managed, despite his extraordinary travel schedule, to raise our collective consciousness as well as to provide a personal note of camaraderie. Debbie Gilmer remembers how she and a mutual friend approached Herb at a supported employment conference as he was sitting on the floor with his laptop. Herb immediately jumped up to welcome the young man and within moments, the two of them were sitting on the floor, laughing and typing back andforth to one another in their effort to get reconnected. John Butterworth recalls that, despite being near-neighbors, his contacts with Herb occurred almost entirely in airports most recently in Ohio, talking about systems change and person centered planning as Herb tapped away on his laptop. Liz Obermayer tells us, 'I knew Herb from many different national events. He was a great friend to the national self-advocacy movement and a friend in general to all. We will miss him.' And countless other New Englanders, who did not have the chance to approach this man on a personal level, thoroughly enjoyed being squashed into standing room only workshops to hear Herb using a lively banter sprinkled throughout with stories and "Herb-isms" that had the audience in stitches and had them leaving with new insights that only Herb could instill. Linda Rammler
In light of these and countless other perspectives on Herb's contributions, it is with a sense of purpose that we encourage you to read, reflect, discuss, and share this edition of the TASH Newsletter with your friends and colleagues. As Herb noted in his most recent book, "real behavior change comes from a relationship; the more serious the need for change, the more serious this relationship needs to be." Each of us can attest to changes we have experienced in how we approach interactions and problem solve with one another in relationship to Herb's work over the years. It is our hope that collectively, we in the TASH community will continually expand our abilities to listen with understanding to ourselves and one another as we move forward in our advocacy efforts.
PAGE 3 TASH Newsletter, Nov./Dec. 1998 EST COPY MUM 30frt.). FROM THE EXECUTIVE DIRECTOR
to Herb. Herb is also the recipient of the presented tough problems. He said, "The 1998 TASH Positive Approaches Award. real key is this; you have to pretend that Herb's partner, Michael Dowling, and in the end, all the people for whom you some of Herb's friends have established a provided behavioral supports are lined up fund and an annual award in Herb's at the pearly gates. Some portion of the memory The award is called the "Rabbit people you supported come up and shake Award". Herb closely identified with your hand and thank you for the support rabbitsanimals known for being fleet of you gave. They tell you about the positive foot, able to make great leaps and ways in which the support you provided creatures accomplished in their ability to affected their lives. Then there's the other call down fears and face them. The groupthey approach you with their From the Executive Director Rabbit Award is a cash award to be hand out, toobut rather than shaking your hand, they haul off and slug you." BY NANCY WEISS presented to someone who has "made the leap". Nominations and self-nominations Herb went on to assure us that we were Iwrite this a few days before staff leave are being sought. For more information never going to end up with everyone for the conference in Seattle.Like about the Rabbit Award, see page 20. fitting into the first group; but that the many of you, I approach every One of my jobs before coming to whole focus of our work with people had conference with a real sense of excitement TASH was running a project in which to be aimed toward improving the odds. but I'm anticipating this year's conference behavioral staff worked with parents, I can't help but imagine Herb up with a sense of disbelief as well.It's hard teachers, direct care staff and others to there, with his impish grin, and a lot of for me to imagine a TASH conference support people with seriously challenging hands to shake. As will become clear as without Herb Lovett there. As many of behaviors in their homes, schools and you read this issue, Herb left an important you know, Herb died in a car accident last communities. I will never forget a lesson I legacy in the many souls he touched here March. Herb was a mentor to me as learned from Herb during one of his many on earth. he was to many others across the country visits to help us assure we were doing the This issue of the Newsletter is dedicated right things to support people that
STATE OF VE ONT DIRECTOR OF DEVELOPMENTAL SERVICES Job Code: 453100
Top level classified manager, reporting directly to the Cominissioner of Developmental and Mental Health Services. Responsible for statewide leadership, planning and strategic direction of a comprehen- sive community-based service delivery system for citizens with developmental disabilities. Oversees a budget of $64 million and a staff of 46; $60 million of the budget is administered through contracts with a private non-profit provider network. Must be able to work effectively with various stakeholder groups, be a visionary and be responsive to the needs of consumers and family members. Salary range: $50,065-$79,726.
APPLICATION DEADLINE: February 1, 1999 with interviews during March. Apply by separate standard State of Vermont application, resume and cover letter to Linda McGrath, Agency of Human Services, Personnel Division, 103 South Main Street, Waterbury, VT 05671-0202. Telephone: (802) 241-2783; VT/TTY relay service: 1-800-253-0191; Fax: (802) 241-2797.
For more information, including a copy of the detailed job specifications/qualifications for this position, go to: www.state.vt/pers or contact Linda McGrath at the numbers above or via e-mail at [email protected] EOE
PAGE 4 3,06 TASH Newsletter, Nov./Dec. 1998 SUPPORTING PEOPLE WITH DISABILITIES THE LOVETT WAY
ince last March when, as one that we are withholding the parts of mutual friend has phrased it, ourselves that most deeply inform our "Herb left," I've written several capacity to be of service. pieces about him for various People who have attended Herb's journals and newsletters. It still feels trainings will recall the process he often strange to compose articles about a dear used to help others make connections personal friend who was also a public between incidents and feelings from their figure, and who continues to have a wide I the own lives and the behavior of those they and powerful impact among his profes- supported. Conversations would be sional connections. initiated by asking staff to identify some I think we all search for meaning of the behaviors that puzzled them and when someone we're close to dies, but it Ilea iH, what they were currently trying to do to feels like a particular responsibility to help in these situations fairly safe learn from the life of a person like Herb, territory. The next two questions, who touched so many others during his however, would always take the group career. His talents and interests were so As Well right to the heart of things: rich and varied that it will take us a long time to appreciate his entire legacy. One "When have you behaved of his qualities that has been particularly in a similar way?" and important for me is the way in which he As the "What were your good reasons kept deepening his work of understand- for doing so?" ing others by including more of the personal through his own example, as Through hosting Herb in many well as by extending invitations to Heart locations and facilitating with him as we colleagues to do the same. came to know each other better, I saw Back in the 1970s the women's how countless groups of people were BY SUSANNAH JOYCE movement used to refer to something helped by his process, to make a funda- called, "the click" that seemingly mental shift in attitude. As they consid- sudden realization or epiphany that other people as we would wish to be ered what their own motives had been for shifted one's consciousness, causing an treated, to extend courtesies and kind- some sort of self-injurious action or awareness that there was, indeed, a ness to those we have defined by their "attention-seeking," the realization would problem, a lack, a need for change. For difference. Herb invited people to take come that people with the label (or Herb, I think that one of those "clicks" in the next (often frightening) step in this "severe reputation," as Herb called it) of his own work came when he was writing journey by suggesting that we also being challenging might also have behavior plans in an institution for needed to look at our own difficulties and reasons for how they acted. Once staff people he wasn't even required to see. A pain if we were to provide genuine help and families were able to accept that thought occurred to him: Why not meet to people in distress. there was some sort of logic associated the person over whose life he had so much "What is our brokenness?" he asked with people's puzzling behavior, they power and control? This impulse appears in his TASH session in Chicago some became much more open to problem- so logical, even obvious, but at that time years ago. Herb had come to realize that solving with them instead of imposing and place it was considered not only until we own and understand the ways in controls over them. unorthodox, but extremely ill- advised, which we have been hurt and how we After I had seen the powerful effects and its rejection led Herb to question have been shaped by these experiences, of these discussions I asked Herb if he more and more of the attitudes and would do something similar, but with the approaches used in supporting people focus on how people providing support labeled with challenging behavior. He valued clinical could gain an understanding of one At the basis of this shift was a another's difficult behavior. Like many straightforward but profound assump- expertise in himself other consultants I had noticed a number tion: that people who need some extra and in others, but his of situations where problems among help would appreciate the same respect insistence professionals or between families and and opportunities for power and choice on the presence of staff created major obstacles to the as those offering the assistance, and they some mutuality and good support given to people with disabilities. would respond did respond in will as the foundation Herb's response was to invite me to ways similar to how most of us react for work with him to create and facilitate this when we are treated with compassion change has beenan invaluableworkshop. We used a process similar to instead of control. contribution toour field. his usual one to help people explore It is one thing to be willing to treat Continued on page 6
PAGE 5 TASH Newsletter, Nov./Dec. 1998 SUPPORTING PEOPLE WITH DISABILITIES THE LOVETT WAY
Solutions of the Head, Rogers' territory, where good relationships and leadership. We facilitated these As Well As the Heart would automatically result in "...a gatherings with our friend and colleague Continued from page 5 beautiful day in the neighborhood." He from England, Joe Whittaker, and learning brought a practical, commonsense about others' personal and spiritual beliefs approach to problems, exploring solutions and how these values influenced and of the head as well as those of the heart. sustained their work offered yet another The atmosphere Herb He valued clinical expertise in himself and way to strengthen professional commit- inspired was not some in others, but his insistence on the ment and deepen that network of collegial manufactured attempt at presence of some mutuality and good will relationships. as the foundation for change has been an In trying to gain some insight into "group therapy"; it was invaluable contribution to our field. what we can learn from Herb's life and his based on honesty, respect, Herb worked hard to live the beliefs work, we certainly need to consider his and the assumption that each he spoke about, and frequently shared accomplishments. We must also reflect, struggles and insights from his personal life however, on the person he was. If I were person in the group had in ways that enlightened rather than to try to summarize the importance of power if they wished to imposed upon his audience. He kept what he did, I would say that he helped claim it and use it. pushing the boundaries of what were people to integrate a more holistic "acceptable" areas to explore if we were to approach to supporting people and to broaden and deepen the context in which understanding challenging behavior, we considered challenging behavior. He based on mutuality of relationship, some of the "good reasons" why col- was quick to see the sense of defining compassion and commonsense. leagues, supervisors and non-paid change for people with disabilities as part It was the kind of person he was, supports could be critical, untrustworthy, of a larger social justice movement while, however, that allowed him to have such a or uncooperative. at the same time, emphasizing the connec- great impact. His invitations to people to One of the very powerful questions tion between the political and the personal, connect more deeply with the personal that Herb would pose to people who were even spiritual, nature of this work. and spiritual in this work and his willing- puzzled over the actions of someone with When we worked with people at The ness to be open in his own struggles and a disability was "Who loves this person?" McGill Summer Institute in Montreal each progress in these areas could have been When confronted with the reality of summer, our group had two weeks perceived as superficial or self-serving in people's lives, staff too often had to together to reflect on their own difficulties someone less genuine than Herb. He was concede that no one loved the person, and fears within the safety of the course's the first to admit how frequently he fell and that helping them develop some larger focus on challenging behavior and short of his own aspirations for tolerance. relationships would have to be one people with disabilities. For a small But if he had already mastered all of the essential part of any future support. minority each year the prospect of looking qualities he sought or if he had been less By asking that same question, "Who beyond the problems of those they served forthright about the problems he faced in loves the person?", regarding a manager or to include some examination of issues comprehending difficult behavior in someone else providing support, staff and about where they worked, with whom himself and in others, people would not family members were able to gain new they worked, and some of their own have been drawn to him as they were. insights about those with whom they concerns, was just too terrifying. But most Herb's ideas and beliefs were grounded in worked. It was often something of a people went home from these gatherings humility, humor, empathy, and a fineness revelation to consider that the director of as changed beings, as did Herb and myself of spirit that warmed us and inspired us an organization, a psychologist, social each time, because we had all shared a to try a little harder, as he did. worker, or parent-advocate might feel as haven where we could peel back a few In our attempts to continue his work universally disliked or even unloved as more layers if we chose, and grow a little I believe our most important lessons someone labeled disabled. Pondering new in tolerance and understanding. The present themselves less in the doing than possibilities for why colleagues behaved as atmosphere Herb inspired was not some in the being. If we can find some of the they did allowed people to let go of some manufactured attempt at "group therapy"; courage he showed to keep uncovering of the blame and hurt and extend greater it was based on honesty, respect, and the and giving from our authentic selves, and patience and willingness to improve these assumption that each person in the group if we have a real willingness to bring working relationships. had power if they wished to claim it and generosity and graciousness to our It is important to note that none of use it. struggles with everyone's "difficult these discussions, whether around people Based on the quality of connection behavior," then we will certainly honor with disabilities or co-workers, was based that occurred in our group each year in Herb's memory as well as his vision, and on any glib belief that everything would Montreal, and on his own strong interest create some significant social change at resolve itself if people just loved one in the spiritual, Herb initiated the idea of the same time. How he would love that! another enough. Herb would often retreats where people could discuss their remind everyone that we weren't in Mr. own experiences of service, spirituality
30L PAGE 6 TASH Newsletter, Nov./Dec. 1998 NOVEMBER/DECEMBER 1998
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BEST COPY MAPAISLE 30 PAGE 7 TASH Newsletter, Nov./Dec. 1998 WHO WILL BE HERB LOVETT NOW? Who Will Be HERB LOVETT Now?
BY MAYER SHEVIN
Like many other members of TASH, I knew and admired Fortunately, Herb's legacy includes a couple of very clearly Herb Lovett for many years, although our paths crossed infre- written instruction manuals on how to carry the work forward. quently Despite the rarity of those treasured interactions, Herb His books, Cognitive Counseling and Persons with Special Needs was a fixture in my life; he could be counted on to say those (Praeger, 1985), and Learning to Listen (Brookes, 1995), both things that most needed to be said, to describe most clearly the provide enormous insight into how to do this work of oursour Emperor's lack of clothing, and to say precisely where real real work that of sharing our lives with others across our real dignified garments for all our fellow humans might be found. and imagined differences. When Herb died, I spoke with many people who knew him. There is a passage by Walt Whitman that seems to describe We shared our personal loss, and found we had a common Herb very well.It reminds us that, despite our loss, we are all reaction: "Who will be Herb Lovett now?" We could not empowered to continue the work that our friend left behind. envision doing our work without his wise, passionate voice Whitman was talking about the source of poetry that exists speaking out about the injustices done to our friends in the name within each of us.It resonates with Herb Lovett's ability to of benevolence. We knew we would feel the absence of his clear speak to the potential for understanding and connection that perspective that we are all fellow travelers, figuring out the hard each of us holds. parts of life together.
This is what you shall do: Love the earth and sun and the animals, despise riches, give alms to everyone that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powetful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re- examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body... The poet shall not spend his time in unneeded worh. He shall hnow that the ground is already plowed and manured...others may not know it, but he shall. He shall go directly to the creation. His trust shall master the trust of everything he touches.., and shall master all attachment. (Walt Whitman, Preface to Leaves of Grass, 1855.)
PAGE 8 310 TASH Newsletter, Nov./Dec. 1998 HERB LIVES IN LOS ANGELES
Herb * * * * * * * * * * Lives in * * * * * * * * * *
Herb's not gone. He can't be. He in and that she would bring a nice has not completed his contract with our Los southern personality and approach. He agency.I have a signed document stating was right. But Herb was right lots of that he would provide on-going consul- times. tation and support to us as we move Angeles Everyone knows that Herb had a forward with our journey of supporting biting sense of humor. He could attack people in valued ways. He owes me people and they wouldn't even know it. several reports, so you see he can't be BY JEFFREY L STRULLY We had such a good time poking fun at gone. He continues to live daily in Los our colleagues. It was one of the things Angeles in the way we think about the * * * we enjoyed so much making fun of people we support, their lives, and how Herb was a our colleagues and, more importantly, we live our lives. So you see Herb is not our friends. With a laser like approach, wonderful, thoughtful, gone at least to us. he could rip apart a fellow colleague. For the past six years, Herb spent a and masterful educator, How wonderful. considerable amount of time working thinker, and mentor. Herb was a wonderful, thoughtful, with our agency and the people we and masterful educator, thinker, and support. As everyone knows, Herb was He helped us in so mentor. He helped us in so many ways, one of the most of the thoughtful, funny, many ways, but more but more than anything he was a friend. and weird people I have ever known. I will miss Herb and I know that my than anything he Herb worked hard at pushing us to think colleagues at Jay Nolan will miss him, as outside of the box. Time and again we was a friend. well. However, he's not gone. He would get caught up into trying to think * * * continues to live in our hearts as well as simply about something or looking for in our heads as we continue the struggle easy solutions for complex problems. to build communities that more than Over and over, Herb would push us to to stay in the cheesiest motels and local accept, but embrace diversity and see the humanity in people and not get neighborhoods. That was Herb. celebrate each and every one of us. caught into the labels, diagnostic When I was looking for an assistant So Herb, take care and keep watch- categories, and all of the stuff that executive director just before his tragic ing over us and continue to mentor us. surrounds people who challenge us. He and untimely death, he referred to me We have lots to do before the dreams that helped mentor many of our staff who Jopie Smith. He told me that she had to we want to see happen for the people we have come to be "Herb look-a-likes." He get out of Texas and from what I can tell support are realities. We need your help, loved spending time with us because that made perfect sense. Obviously, after so don't be far away! we had so many unique people who years and years of living in Texas she worked for us that he actually fit in. finally came to her senses and moved to When he stayed with us, he would want Los Angeles. Herb told me she would fit I,S 311 PAGE 9 TASH Newsletter, Nov./Dec. 1998 NOVEMBER/DECEMBER 1998
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PAGE 10 12'TASH Newsletter, Nov./Dec. 1998 :
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The Top Ten Reasons I loved and will miss Herb Lovett
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10Though many us always suspected, he was the first to actually prove that bowling causes mental retardation.
9He helped us understand that allowing people to have breaks and apologizing about our failure to support them are more appropriate than ignoring and timeout.
8He showed us the utter futility of using token rewards for people who don't live near a bus line.
7His "Miss Manners" training exercise taught us to question why there is such a big difference between what we want, what works for us and what we do to "them."
He taught me how to take a perfectly laundered shirt, roll it up in a ball and achieve the "Lovett Look."
5He created work for me. He would go someplace and pretty much tell the truth, at least his version of it. Later, the people who invited him would call me and say "Herb was great, he changed our thinking and we are excited about the potential for change, but...all the psychologists left the training session during the morning break. Could you come help us get them back?" Not being committed so much to the truth, I would answer, "of course."
4He was the best person ever to share professional gossip with.
He liked the same people I did, which gave me more confidence in my own judgments.
2His profound humility, evidenced by his taking on all of behavioral psychology and spending his spare time correcting flaws he discovered in the works of Beethoven.
1Listening to him and reading his books helped make me a better person and better at my work.
Wade Hitzing
PAGE 12 3 1 1f TASH Newsletter, Nov./Dec. 1998 HERB LOVETT
Dear TASH:
I don't know if this is the venue at which you wanted to receive tributes and remem- brances on the life and work of Herb Lovett, but I thought I would try anyhow
Not long ago I received my Newsletter and heard the terrible news of his much too early loss. After spending years working for persons with autism and other developmental disabili- ties, I am currently working for persons living with psychiatric disabilities. And still, on a regular basis, the many things learned from Dr. Lovett when I was a very young practitioner come into play: insistence on a positive approach to our work with persons and a recognition of the right to individual choice come to mind, among many others.
While I employ a lot of these wonderful lessons in my current work, the one thing I have "stolen" from him which I think has the quickest and most immediate impact in training is his on-target labeling of do-nothing day programs as "Day Wasting Programs."
I do a great deal of training for practitioners and administrators of mental health services all around the counn and believe me, the term still fits a vast majority of federally funded programs for people who are living with psychiatric challenges. These "programs" are places where the only option people have is to sit around, drink coffee, watch TV, and learn to have dreamless lives. The polite name is usually Partial Hospitalization programs; sometimes they are called Day Treatment Centers.
I trust that Dr. Lovett would enjoy the immediate response I get as I start into my discussion of these programs and call them what they areit never fails to start a dialogue! Some would call it an argument. Whatever people choose to call it, it gets folks thinking about what is right and what is fair and what our efforts are supposed to be all about.
I am very, very grateful to have had the opportunity to have listened and read and benefited from the gift that was Herb Lovett. All of us who remain must make sure that his work and his legacy live on in the efforts of the years to come.
Dr. Kate R. Donegan Director of Services Matrix Research Institute Philadelphia, PA
BEST COVY NIA LAuLF-
3 Ei PAGE 13 TASH Newsletter, Nov./Dec. 1998 NOVEMBER/DECEMBER 1998 INCLUSION WHAT WE KNOW...... NOW WE TEACH Linking to Medicine INEs aEducation TION for the
Childwith for the Child with Special Special Needs Needs
00111118W. BRUCE A. BUEHLER, M.D.
Across America there is an ever increasing number of special needs children in our schools. Children whose medical conditions and instructional demands are closely linked. Whether it is medication, physical or occupational therapy, or prescribed behavioral interventions, these children present special healthcare needs which educators need to know in order to teach them well. Bruce Buehler, M.D., Chairman of the Department of Pediatrics and Director of the Munroe- Meyer Institute for Genetics and Rehabilitation at the University of Nebraska Medical Center, hosts a dynamic and highly informative presentation linking "what we know" in the field of medicine to "how we teach" special healthcare children in our nation's schools. Advances in neuroscience, diagnostic procedures, prescription medication and treatment approaches require administrators, teachers, school nurses and other related services staff to become knowledgeable about various medical conditions and their impact on learning. BRUCE A. BUEHLER, M.D. Dr. Buehler and other experts at the University of Nebraska Medical Center review: Neuroscience, Prenatal influences and prevention, Developmental disabilities, Medication and attention disorders and The team approach. Explore how schools have included children with special healthcare needs into their learning environments. Special syndromes such as Autism, Fragile X, Fetal Alcohol Syndrome (FAS), and Attention Deficit Hyperactivity Disorder (ADHD) are featured. This video is an excellent staff development tool not only for special educators, but for regular educators and school nurses serving children with special healthcare needs in inclusive settings. 1998, VHS, 34 minutes Order #VLME-TN 9 Price: $99.95
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PAGE 14 31b TASH Newsletter, Nov./Dec. 1998 NOVEMBER/DECEMBER 1998 STANDARDS tandards Inclusion: Can we have both? 4)* DOROTHY KERZNER LIPSKY, PH.D. & ALAN GARTNER, PH.D. The move toward higher standards in our nation's schools has raised a major dilemma for educators committed to the inclusion of students with disabilities. How can these students truly succeed in a learning environment where academic standards and formalized testing are increasing? Dorothy Kerzner LipskyandAlan Gartner,from the National Center on Educational Restructuring and Inclusion at the City University of New York, address many of the critical issues facing educators who are supporting students with disabilities in inclusive settings. DOROTHY ALAN GARTNER KERZNERLima Through a dynamic and power- ful presentation Drs. Lipsky and Gartner discuss: The Consequences of Higher Standards The Seven Factors of Successful Inclusion td.4 The Reauthorization of I.D.E.A. The Restructuring of Our Schools Visit schools across the country and observe first-hand how the learning Can we needs of all students are being successfully met in general education environments. Learn how special education is a service not a location. have both? Understand that the inclusion of students is not determined solely by where they are placed, but by their full and complete access to the same curriculum as the general education population. ow* Whether a regular or special educator, this video is a must for pre- ayft4ai service and inservice training.
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1997, 414pages, soft cover Order#1NSR-TN9 Price: $36.95
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3 1 PAGE 15 TASH Newsletter, Nov./Dec. 1998 A PERSPECTIVE ON INCLUSION
RadicalHeart70
I Cc2,_ ci3JD v./ J A Perspective on Inclusion Remember only this of our BYPETER V. PAUL hopeless love That never till time is done ne of the most popular Will the heart and the fire of the questions that some of my You might mind be one. students like to ask me is: Dame Edith Sitwell inquire: Does What do YOU think of (1887-1964) inclusion?0 Typically, any response to inclusion work? that question is complex and detailed; ...for a number mind' response is based on my scholarly however, these students expect some- of us the question conclusion that inclusion requires a thing 'more' from me. For sure, they is: what can we critical (e.g., via critical theory) resolution expect to hear three 'voices', at least: (1) because it cannot (should not) be a personal one based on my 'condi- do to make resolved 'empirically' (e.g., via science).I tion'a profound bilateral hearing inclusion work? think I just felt a few knee-jerk reactions impairment (i.e., deaf with a lower-case to that statement. You might inquire: Do d); (2) a professional one representative you mean that we cannot or should not of my scholarly views regarding deaf and investigate whether inclusion is 'effec- hard of hearing children; and (3) a individuals (i.e., individuals who are tive'that is: "Does inclusion work? familial one representative of my feelings deaf, blind, or who have significant Oh, you can, but only if everyone wears as a father of a son with Down syndrome physical, emotional, and/or cognitive the same pair of lens and are interested in (now 7 years old), who also has autistic- 'conditions'). For many of these 'certain' the way this question is worded. I am like behaviors and, possibly, apraxia individuals, inclusionespecially full not, and neither are many other parents (aphasic type of problem). Given the inclusion in general-education classes in and professionals. In other words, for a above, I always ask the students whether schoolsmight be very unrealistic, number of us, the question is: What can they expect to hear one, two, or three undesirable, and not very cost effective. we do to make inclusion work? 'perspectives.' To my surprise (well, not Nevertheless, I still feel that we should As most of you know, the Individu- really), nearly all of them select the two proceed as fast as we can with full als with Disabilities Education Act of or more categories. inclusion as our guiding light for most 1990 (IDEA) (PL 101-476), which was In essence, I have only one voice, of these individuals. This is what I reauthorized in 1995, dictates that every influenced mostly by my role as a father, called my 'radical heart, moderate mind' school-age child with a 'disability' (e.g., and it sounds like this: "Wearing my approach. Yes, it is what I want for blind, deaf, etc.) shall have the right to a critical metatheoretical lens and reflect- myself, most deaf and hard of hearing free and appropriate public education in ing on diversity and equity issues, I feel students, and my son; and, yes, it is the least restrictive environment (LRE). that we need to do our best to include more radical than moderate. The interpretation of the word free everyone in all aspects and institutions No need for my readers to throw seems to be widely accepted; that is, of society such as the community, cyberspace tomatoes or pull out their educational services should be provided education, business, and so on.I am hair although I admit that my students to meet the individual needs of the aware that this 'radical inclusion' do mutter 'he's doing it again.' They students at no cost to the parents. On approach will require many resources, a are referring, of course, to my incessant the contrary, there is much ongoing, great deal of energy, and an on-going penchant for critical metatheorizing. acrimonious debate on the interpretation commitment, especially for certain However, the 'radical heart, moderate Continued on page 1 7 PAGE 16 316 TASH Newsletter, Nov./Dec. 1998 A PERSPECTIVE ON INCLUSION
Radical Heart, influenced by what can be called the fact, these two broad labels seem to Moderate Mind 'comparison' lens (e.g., see Paul & capture much of the information on Continued from page 16 Ward, 1996) or the 'readiness' lens in inclusion in the theoretical and research which there is an attempt to select the literature. Of course, this is my critical of the word appropriate. This debate 'best' setting based on achievement and/ metatheoretical assumption. focuses on such issues as the contents or socialization data on the student. Research scholars who favor the and practices associated with instruction, They might also consider other issues comparison paradigm conduct research curriculum, and assessment as well as the such as existing services, current (mostly quantitative) designed to answer manner in which educational services, placement procedures, or interpretations the question: Does inclusion work? including ancillary services (e.g., speech of the legal parameters of IDEA (e.g., Typically, this involves the comparison pathology, physical therapy, etc.) should Osborne & Dimattia, 1994). On the of social and academic performances of be provided. In addition, even the other hand, many parents, including the students in one setting with those of location at which services should be present writer, are influenced by what statistically-matched counterparts in rendered, that is, the LRE, does not have can be called the 'ethics' lens (Paul & another setting (e.g., see discussions in a universally accepted definition. Never- Ward, 1996), which is, typically, more Bilken & Zollers, 1986; Fuchs & Fuchs, theless, there is a growing consensus that oriented toward value-based and 1994; Wang & Walberg, 1988). The 'special-education' is not a place. Rather, successful outcome measures within an main goal is to determine whether there it is a rendering of services to 'whatever inclusive setting, namely, a setting with is a statistical difference relative to the place'and, this 'place' seems to be the nondisabled peers. type of setting. That is, which setting environment which contains, at least, These two broad paradigmatic (or conditions within the setting) is individuals without `disabilities'. Thus, in lenses of inclusioncomparison and responsible for the higher performances? one sense, the LRE can be wherever you ethicscan be 'deconstructed' from a Within the comparison paradigm, want it to be. However, with respect to critical analysis of several prominent researchers need to ensure that variables diversity and, possibly, equity, the LRE publications (e.g., Kauffman & are statistically controlled so that the cannot be a separate, specialized setting, Hallahan, 1995; Stainback & Stainback, effects of main factors, for example, which houses only individuals of a 1984; Stainback & Stainback, 1992). In achievement or socialization, can be particular gender, race, ethnic group, evaluated. Obviously, making these religion, or disability. Oops, I think I see comparisons or interpreting the results some more cyberspace tomatoes coming ... many parents, is not a piece of cake. Indeed, some my way including [this] scholars have argued that it is unrealistic Let me continue. As I mentioned, it or an oversimplification. Still others is often stated that services should be writer, are influenced have argued that it is really not possible provided within placements involving by what can be to reach a widespread consensus based non-disabled peers. The law, however, called the 'ethics' on empirical findings alone (e.g., see does allow for a full continuum of discussions in Paul & Cartledge, 1996). services. That is, placements can include lens which is For scholars within the comparison general-education classrooms, special typically more paradigm, the placement of a 'special- segregated classrooms, homes, or clinics oriented toward education' student in inclusive settings and hospitals. The placement decision value-based and should be contingent upon the student's is the task of the student's education ability to meet certain, minimum social team members (e.g., Individualized successful outcome and academic criteria, and whether an Education Plan [IEP] team, multifactor measures within an individual's needs can be met in such a evaluation team, multidisciplinary team, inclusive setting, setting. So, in general, the least etc.), who attempt to describe the restrictive environment and/or the most optimal educational conditions for a namely a setting appropriate placement for a student is particular student relative to the terms with children an individualized decision based on appropriate and least restrictive envi- without disabilities. careful examination of social and ronment. In making a decision, mem- academic criteria and the individual's bers of the school team are often Continued on page 18 315 PAGE 17 TASH Newsletter, Nov./Dec. 1998 A PERSPECTIVE ON INCLUSION
Radical Heart, assert that all individuals should be 'segregated' setting. Parents need to be Moderate Mind treated with dignity and have a moral assured that their children will be Continued from page 17 right to be included in the mainstream of reasonably accepted in these inclusive general education (e.g., Biklen, 1985; classrooms and not be subjected to present levels of performance. This Gartner & Lipsky, 1987; Stainback & overly unreasonable physical and mental approach to inclusion might best be Stainback, 1990). Stainback and abuse (e.g., York & Mundidor, 1995). described as "cautious and individual- Stainback (1990) have remarked: "No In my view, these parents are most ized." There is also much doubt that one should have to pass anyone's test or concerned with the question: What can general education will ever be in a prove anything in a research study to live we do to make inclusion work for my position to handle effectively students and learn in the mainstream of school child? For me, and many other parents, with diverse characteristics, especially and community life. This is a basic right, this is the 'question' that should be students who are deaf, blind, or have not something one has to earn" (pp. 5-7). addressed for children with special significant and/or multiple disabilities To address the question, What can needs, indeed, all children. (e.g., see discussion in Kauffman & we do to make inclusion work?, educa- With all due respect to my univer- Hallahan, 1995). Consequently, these tors (and others) need to remove a few sity students and to my readers, I am scholars argue that separate settings are barriers to 'effective' inclusion. With 'doing it again' because the framing of not only equal to integrated settings but respect to the bureaucratic organization the question is pervasively dependent also, in some cases, separate settings of the schools, some barriers are "fixed" upon the critical perspective (i.e., might be better and preferable. curricular and instructional practices paradigm) of the framer.I prefer an Scholars who favor the ethics geared to "average-performing" students, inclusive frame and want to know paradigm argue that inclusion is pre- lack of collaborative structures involving what can we do to make it work and will dominantly an ethical and diversity issue classroom teachers and relevant support we do it for everyone, as much as (e.g., see discussions in Stainback & personnel, standards imposed by a possible? Now, before anyone throws the Stainback, 1990; Stainback & Stainback, centralized administration (e.g., national next batch of cyberspace tomatoes, 1992). The most important question is: guidelines, state mandates, etc.), and consider these critical musings. I am What can we do to make inclusion funding practices (e.g., see Fagel-Wilson not against the creation and support of work? Within the ethics paradigm, the et al., 1993; Skrtic, 1991). In my view, 'separate or special educational institu- goal is to ensure the success of children the biggest barrier is the dual system of tions' because these settings play an with special needs (indeed, all children) educationgeneral education and important role for individuals who in typical, general-education environ- special educationas can be seen in the attend them for self-concept, self-esteem ments. Proponents of the ethics paradigm existence of separate university prepara- purposes or who attend them out of tion programs, funding systems, and choice or for the best opportunity to administrative functions and rules. reach their 'full potential.' Granted, it is "No one should have to Focusing on inclusion in education, difficult at times being a woman, a pass anyone's test or I believe that most parents are con- member of an ethnic or minority group, prove anything in a cerned with discrepancies between the or an individual with a disability. outcomes they desire for their children I often wonder, though, if it is research study to live and the outcomes that they believe will possible to create an inclusive, and learn in the occur in a particular setting. Parental multicultural world by being educated mainstream of school perceptions of what is best for their only in these settings. Oh, I am certain children are probably influenced that it is somewhat possible, however, and community life. pervasively by their perceptions and given the little that I know about This is a basic right, satisfaction with the educational services 'contact theory' and its variations not something one actually provided for their children. (Allport, 1961), it seems to me that we has to earn." The crux is this:If parents (and, if must interact with others who think, appropriate, their children) were look, smell, act, and feel differently from Stainback and satisfied with the rendering of services in us. For me (perhaps, unfortunately, for Stainback (1990) an inclusive setting, then they will be me), a multicultural, inclusive world is
more apt to select this setting over any Continued on page 19 PAGE 18 320TASH Newsletter, Nov./Dec. 1998 A PERSPECTIVE ON INCLUSION
For me, a multicultural, inclusive world is not really possible through the cognitive avenue only. That is, you cannot just 'read and discuss' about others. You have to study, work, live, eat, talk, etc. with them. The more this happens, the more likely one can develop an appreciation and, hopefully, acceptance and understanding of the diversity of the human race.
Radical Heart, Moderate Mind References Allport, G. (1961). Patterns and growth in personality. New York: Holt, Continued from page 18 Rinehart, & Winston. not really possible through the cognitive Biklen, D. (1985). Achieving the complete school: Strategies for effective avenue only. That is, you cannot just mainstreaming. New York, NY: Teachers College Press. 'read and discuss' about others. You Bilken, D., & Zollers, N. (1986). The focus of advocacy in the LD field. Journal have to study, work, live, eat, talk, etc. of Learning Disabilities, 19, 579-586. with them. The more this happens, the Fagel-Wilson, M., Etienne, J., Sparks, S., Coons, D., Schultz, M., Jones, B., more likely one can develop an appre- Bertelsen, C., & Opperman, J. (1993, March). Columbus, OH: ciation and, hopefully, acceptance and The Ohio Federation Council for Exceptional Children Report on Inclusion. understanding of the diversity of the Fuchs, D., & Fuchs, L. (1994). Inclusive schools movement and the human race. And, who knows, maybe radicalization of special education reform. Exceptional Children, 60, 294-309. this will go a long way in resolving Gartner, A., & Lipsky, D. (1987). Beyond special education: Toward a quality some of our equity issues. system for all students. Harvard Educational Review, 57, 367-395. Ah, the joys of critical Kauffman, J., & Hallahan, D. (Eds.). (1995). The illusion of full inclusion. metatheorizing and the pains and Austin, TX: Pro-Ed. frustrations of the slow, tedious progress Osborne, A., & Dimattia, P. (1994). The IDEAs least restrictive environment toward the utopia of social justice. mandate: Legal implications. Exceptional Children, 61, 6-14. Paul, P, & Cartledge, G. (Eds.). (1996). Theory into Practice, Inclusive The author, Peter V Paul, Ph.D., is Pro- Schools: The Continuing Debate, 35(1). fessor of Education at the School of Teaching and Learning, College of Edu- Paul, P., & Ward, M. (1996). Inclusion paradigms in conflict. Theory into cation, The Ohio State University. He Practice, Inclusive Schools: The Continuing Debate, 35(1), 4-11. can be reached in the following manner: Skrtic, T. (1991). Behind special education: A critical analysis of professional culture and school organization. Denver, CO: Love. SURFACE MAIL: Stainback, S., & Stainback, W. (Eds.). (1992). Curriculum considerations in 333 Arps Hall, 1945 N. High Street, inclusive classrooms: Facilitating learning for all students. Baltimore, MD: Columbus, Ohio 43210 Brookes. ELECTRONIC MAIL: Stainback, W, & Stainback, S. (1984). A rationale for the merger of special [email protected] and regular education. Exceptional Children, 51, 102-111. FACSIMILE: Stainback, W, & Stainback, S. (Eds.). (1990). Support networks for inclusive 614-292-7695 schooling: Interdependent integrated education. Baltimore, MD: Brookes. PHONE: Wang, M., & Walberg, H. (1988). Four fallacies of segregationism. Exceptional (v) 614-688-5677 (message only) Children, 55, 128-137. (tty/tdd) 614-292-8769 By appt. only York, J., & Tundidor, M. (1995). Issues raised in the name of inclusion: Perspectives of educators, parents, and students. Journal of the Association for Persons with Severe Handicaps, 20, 31-44.
321 PAGE 19 TASH Newsletter, Nov./Dec. 1998 HERBERT LOVETT MEMORIAL FUND
FACULTY POSITION s> Eastern Michigan University's Department of Special Education invites applications for a The Herbert Lovett Memorial Fund tenure-track assistant professor position- avail- announces able Fall 1999. Responsibilities include teaching The First Annual Rabbit Award undergraduate and graduate courses; advising "In the earlier part of this century we believed that students; supervising student teachers; conducting the new behavioral sciences, with a cunning scheme scholarly and service activities; and working of rewards and punishments, would remove difficult collaboratively in a team situation with a field- behavior effortlessly. I think that dream is dead. 1 based study program. hope so. 1 hope that we've come to the point in our history where we have started to recognize that: the end point of pure thought is probably death; that we Qualifications: Master's plus teacher certification are not going to think our ways out of these and endorsement to teach students with mental problems; and that we require a new respect for the irrational,theintuitive and the felt.we are retardation, both elementary and secondary discovering that we need people who step out of the preferred. Minimum of five years teaching experi- mode of what we created....to remind us who we are ence, including at least three with students with and who we need to be for one and other." mental retardation. Preferred: Ph.D. or Ed.D; Herbert Lovett 1995 teaching experiences in a variety of settings Herb had a strong tie to rabbits in his life. The including inclusion settings, unified systems, rabbit is know for its ability to procreate, its resource rooms and/or as teacher consultants; fleetness, its ability to make great leaps, and its skills in using technology with students with ability to call down its fears and face them. mental retardation; effective interpersonal skills On March20,1999,theHerbertLovett and ability to work within a collaborative team; Memorial Fund, Inc. will be presenting its first documented evidence of effective collect teaching Rabbit, a cash prize, to a person who has made and/or with adult learners. the leap. This award is open to all. We are also looking for donations to make this a sustainable fund. For more information on the Herbert Review of applications will begin January 15, Lovett Memorial Fund, write to either address 1999 and continue until position is filled. Send below. letter of application, resume, transcripts and three current letters of recommendation to Position Send donations to: Apply by letter to: F9926, 202 Bowen, Eastern Michigan University, Rabbit Award Herbert Lovett do Michael Dowling Memorial Fund Ypsilanti, MI 48197. 76 G Street c/o Barbara Cutler Boston, MA 02127 7 Theresa Circle We encourage applications from women and Tel. 617-269-8382 Arlington, MA 02474 members of minority groups. AA/EOE. Fax 617-268-8908 Tel 781-648-1813Fax
PAGE 20 322TASH Newsletter, Nov./Dec. 1998 A TRIBUTE TO HERB LOVETT A Tribute to Herb Lovett: TEACHER- MENTOR - FRIEND
Herb Lovett, Ph.D., was a man of great courage, with standards of social justice to protect people with autism and conviction and extraordinary caring. He was a similar disabilities, Herb did not hesitate to help form the friend to many, especially people with disabilities incorporation for the Autism National Committee. He blithely and their families. And he was a special friend to the accepted its first presidency because we had clear standards for Autism National Committee. membership, information and advocacy, and a commitment to I met Herb in the mid '80s after the publication of his first greater understanding (as did Herb). Here was yet another book, which was full of wisdom about the human condition of opportunity to speak out and educate all the players the people with disabilities and the often inappropriate, disrespectful individuals themselves, their families, and the providers of and even abusive treatment they received from the people and education and human services. agencies that were supposed to serve them. I was blessed many times in my friendship with Herb, most I remember Herb's first presentation at another conference. of all through his special and close relationship with my son, He was overwhelmed by the idea of having a whole half an hour Robert. Herb talked about his favorite image of Rob which was to speak. How could he possibly fill half an hour? Those of you in Herb's kitchen, drinking champagne from a fluted glass on St. who knew Herb and/or heard him speak know that half a day, let Patrick's Day Not the usual image of people "accused of having alone half a hour was nothing. autism," but as Herb would say, "Why shouldn't he be drinking His second book was called Learning to Listen. "Listening" champagne like the rest of us?" Herb made community happen. was the operative word for Herb. He was a listener, especially to At Herb's memorial service last April, Rob, said, "I want people with disabilities and even more to those incarcerated in everyone to know Herb loved everyone. He is now an angel in institutions. He usually engaged his audience in a dialogue, God's army" and, (reminding us that Herb was also a composer extending their awareness of what they heard and saw and of of music and a poet) "Herb is going to many operas in heaven. what they instinctively knew. He often did this with wit, His days are spent reading poetry and his nights are filled with occasionally cutting, but always illuminating and always leading music." people to seek the achievement of inclusive communities. He We must accept Herb's challenge and strive to keep Herb's spoke of people "accused of having autism," and with that memory, words and works alive. We have lost a great teacher phrase painted a painful picture of the life experiences of and a passionate and loving friend. We are all richer, more individuals with autism and their families. Another favorite of sensitive and more committed to the struggle for social justice mine was Herb's substitution of the word "freedom fighters" for for everyone just by having known Herb. those individuals typically known by program staff as "runners." Herb was our freedom fighter. When parents and advocates Come, my friends, went to the Massachusetts State House trying to pass legislation 'Tis not too late to seek a newer world... to prohibit the extreme, painful, and sometimes gruesome One equal temper of heroic hearts practices professionally inflicted upon people with autism, Herb Made weak by time and fate, but strong in will was there. Although there were few professionals to support this To strive, to seek to find, and not to yield. fight, Herb was constantly with us. Advocacy was an essential Tennyson part of his life. As a professional, he was not above spending an And we shall miss him. evening, a Sunday or even the entire weekend developing,
copying and collating papers to make our case to the legislature Given by Barbara Cutler at the Autism National to end the abuse and violence. He was our friend, and a Committee Conference,"The Human Touch," October 1998. professional of great courage and conviction. When a group of individuals was forming an organization I.S 323 PAGE 21 TASH Newsletter, Nov./Dec. 1998 REMEMBERING HERB
Remembering Herb
BY ROBERT CUTLER
I am sad. The world lost a good man. Herb is still part of my circle in spirit form. He went to heaven and is safe.
I will type about Herb Lovett and how his work will continue. I am writing this for everyone to hear. What was Herb to me? The answer lies in my heart and soul. Last December at TASH, I typed that Herb would take Gunnar's place. What I did not realize was Herb would be in heaven helping the people who died needlessly in institutions.
I want everyone to know Herb loved everyone. He is now an angel in God's army. His job is to help in deciding which behaviorist gets into heaven or ends up in hell. Herb is going to many operas in heaven. His days are spent reading poetry and his nights are filled with music.
Herb wants Michael to build a memorial for the thousands of people who are in institutions.
I will help in freeing everyone from places that use aversive treatments. I will stand and fight against all odds. We need to rally everyone. It is time to fight like the battle of the bulge. It is time to start a revolution and I am ready.
The whole world, Anne, Pat, Sue, everyone in the world of autism. Doug Biklen, Temple Grandin, William Christopher. Time to begin.
I also want to tell people life is hard, but we [must] never stop trying. Fortunately, I have family and friends who support me in my goals for a safer life for all.
Michael, I hope will meet with me so I can type and tell him something. Michael can be on my panel, too. He will replace Herb in a way the world cannot understand, but I do.I hope Michael realizes one of the reasons for Herb's success was because of Michael.
When I typed, God said it was okay that Herb loved Michael. God wants love in His world, not hatred. I understand this from observing. Behaviorists observe us, but we observe, too.
Herb's life needs to live in our hearts and souls. Here, today, we [should] all take a stand that no longer will suffering be allowed. No more, no more!
PAGE 22 3 2 TASH Newsletter, Nov./Dec. 1998 NOVEMBER/DECEMBER 1998
DIRECTOR OF MENTAL RETARDAT1ON/DEVELOPMENTAL DISABILITY SERVICES
Overall responsibility for fiscal, personnel and clinical management of $10 million program serving over 300 individuals with mental retardation/developmental disabilities, delivered by a staff of 180. This program is com- mitted to cutting-edge supports including self-determination, facilitated communication, family-centered services, and community integration. It is located in a state where all state institutions have been closed and there is a high degree of collaboration between state offices and regional providers, and among MR/DD program directors across the state.
Applicants must possess excellent abilities in the areas of program administration, quality assurance and technical compliance; staff development, supervision and training; fiscal development and budget management. Must have a real excitement about managing state-of-the-art programs; boundless energy and enthusiasm for consumers and their families; excellent management skills for large programs with lots of staff; a clinical background in the area of mental retardation/developmental disabilities; a Master's degree in human services; and be eligible for designa- tion as a Qualified Professional in Mental Retardation.
Minimum three years MR/DD administrative experience necessary. Knowledge of managed care as applied to an MR/DD population desirable. Central Vermont is a beautiful area that supports many cultural events, and its moun- tains and lakes offer year round recreation. Schools have a low teacher/student ratio and a safe environment.
Send resume to Human Resources Department, Washington County Mental Health Services, PO. Box 647, Mont- pelier, VT 05601-0647. EOE
Vanderbilt University Peabody College of Education and Human Development
Lecturer/Assistant Professor, Visual Disabilities
The Department of Special Education, Peabody College of Vanderbilt University, seeks a lecturer/assistant professor for a two to three-year, non-tenure track appointment beginning in July or August 1999. There is a possibility that the position will be converted to a tenure-track post after the initial two to three-year term.
Responsibilities involve teaching four courses per year primarily at the master's level, student advisement, practicum supervision, and participation in program development. Qualifications include doctorate in special education or a closely related area, experience with visual disabilities, research interests in visual disabilities, and evidence of scholarly productivity and teaching excellence. Preference given to candidates with external fundingsuccess, expertise with orientation and mobility, technology, and/or multiple disabilities.
Applications for this position will be reviewed beginning January 15, 1999, and will continue until the position is filled. Please send a letter of application, vita, samples of scholarly writing, and the names of three references to Anne Corn, Chair, Vision Search Committee; Department of Special Education; Box 328 GPC; Vanderbilt University; Nashville, TN 37203. Inquiries may be directed to Anne Corn at (615) 322-2249, or e-mail to anne.corn@vanderbiltedu.
Vanderbilt is an equal opportunity, affirmative action employer with a strong institutional commitment to diversity in all areas. The university actively seeks applications from women, minorities, and individuals with disabilities.
MGT COPY AVA 325 PAGE 23 TASH Newsletter, Nov./Dec. 1998 IDEA WHAT'S WRONG WITH THE FEDS?
MARK A. MINER
In 1975, Congress passed the statute now known as the social change in such a lax enforcement atmosphere, and we Individuals with Disabilities Education Act (IDEA). The IDEA ought not be surprised at the results. grants students with disabilities the right to a free, appropriate One result, given DOE's and SEAs' abdication of their public education in the least restrictive environment (LRE). responsibilities, is that the burden of achieving compliance at the However, the LRE requirements are often ignored. This is clear school district level is on the shoulders of parents. For example, from federal monitoring data, and also the obvious conclusion from parents often must go through the expense and emotional pain large state variations in placement rates. Because the U.S. Depart- of due process hearings to attempt to achieve inclusive place- ment of Education (DOE) briefly focused on the latter issue almost a ments in their neighborhood schools. Executive enforcement of decade ago only to drop it unceremoniously rather than act on it the LRE requirements would prevent the need for many of these it behooves the national inclusion community to reassess the hearings, and level the playing field between parents and school arguments DOE offered in light of the current data. districts considerably The IDEA assigns the responsibility of ensuring that school The tables on page 27 set forth the most recent federal data districts comply with it to state educational agencies (SEAs). on placement rates of students in segregated school and self- DOE has the obligation of making certain that SEAs fulfill their contained classroom settings. Clearly, where a student lives oversight, compliance, and enforcement responsibilities. If DOE has a strong influence on the restrictiveness of his or her does not adequately fulfill its obligation it is less likely that educational placement. Even within states, comparisons SEAs will fulfill theirs, and if SEAs do not live up to their between school districts often lead to the same conclusion.3 responsibilities it is less likely that school districts will fully A recent comparison of two neighboring districts provides a implement the IDEA. telling example. The two districts are Massapequa and Seaford, Unfortunately, school districts are not fully implementing New York, which are "in many ways indistinguishable." But the IDEA. While little research has been done on the extent of special education noncompliance nationwide, one study broke [i] f Caitlin had lived in Seaford, administrators down DOE state monitoring data, collected from April 1989 to never would have balked at removing her from February 1992, to the school district level and discovered high isolated special education classes, and if Michelle levels of noncompliance:' had lived in Massapequa, she couldn't have gotten out of them. ...The girls' stories ... dramatize how the personal philosophies of the special education directors in Long Island's 125 districts can produce Requirement Districts Districts in Percentage in diametrically different educational programs.4 Monitored Noncompliance Noncompliance
IEP 165 150 90.9% That "personal philosophies" and other factors have more influence on placements than the LRE requirements is precisely LRE 165 143 86.7% the conclusion DOE has run away from in recent years.
Procedural Safeguards165 152 92.1% Given the large number of students served nationwide, it is illogical to conclude that differences in the populations and In light of widespread school district noncompliance, one needs of students can explain the variation in placement rates must conclude that SEAs are not living up to their responsibili- across states. DOE itself reached this conclusion in 1989: ties.It follows that DOE has not been successful at ensuring that SEAs fulfill their obligations. It is reasonable to assume that the needs of Has DOE made a good faith effort to ensure that SEAs students are broadly similar across States, and that live up to their responsibilities? With the exception of random variation would be rather small in the several highly publicized and unique situations, DOE summary data on the large number of students appears never to take meaningful enforcement steps against served by a State. Thus, the extent of variability states exhibiting continuing noncompliance. This is fatal to suggests that factors in addition to the characteristics IDEA compliance because "[c]reating new arrangements is of students determine educational placements, and that precisely the injunction of the act.If the act is respected, the decision-making power vested in the IEP process executive and judicial enforcement will often be necessary"' It is has not been sufficient to overcome these factors.5 difficult to imagine full implementation of any law requiring Continued on page 25 PAGE 24 3 26 TASH Newsletter, Nov./Dec. 1998 IDEA
WHAT'S WRONG WITTHE FEDS? claimed that it had "worked extensively with States during the Continued from page 24 past two years to improve the comparability of data" (Eleventh Annual Report, pp. 29-30). In 1990 DOE wrote of its inten- tions to By 1992 advocates had reason to feel nostalgic for the honesty and clear reasoning of the 1989 report. After noting in provide individualized technical assistance to the 1992 report that placement rates "vary considerably" across reduce the incidence of misinterpretation of states, DOE wrote: instructions; clarify reporting instructions by defining terms more precisely; distribute and This State variability is likely due to a number of update a data dictionary to include terms that are factors including actual differences in the popula- subject to alternative interpretations; and develop tions and needs of students, the roles of private decision rules that cover a wider range of possible schools and separate facilities in the State, student placement patterns.' different State reporting practices and interpreta- tions of Federal data collection forms, and state But DOE, prior to 1991, did not regard reporting errors as special education funding formulas.6 a major factor impacting state variation in placement rates. In fact, in 1989 DOE concluded that "...it is not likely that In light of the monitoring findings cited above, it is procedural or terminology differences could account for the curious that an obvious possibility that LRE violations are a variance reported here" (Eleventh Annual Report, pp. 29-30). In major cause of the variation in placement rates is not even 1990 DOE stated: mentioned by DOE. This omission is especially startling since three of the factors advanced by DOE violate the LRE require- ...State variation in reporting practices does not in ments. A student cannot be segregated due to the role of itself account for the extent to which differences private schools and separate facilities, or due to a state's in placements exist among States.It appears that, funding formula. To remove a student from a general educa- in addition to variation caused by reporting tion setting, a public agency must show that "education in practices, there remain significant State-to-State regular classes with the use of supplementary aids and services differences in the actual use of the various cannot be achieved satisfactorily" (20 U.S.C. § 1412 (5) (B)). placement options. (Twelfth Annual Report, p. 29; States in which any of these three factors play a role in place- emphasis added) ment decisions are violating the LRE requirements. It is also interesting to note that as early as 1982 DOE While one might wonder whether an agency that admit- urged states to review "all State policies and procedures to tedly does not ensure comparability of data is able or willing to determine whether they facilitate or inhibit the implementation ensure compliance with the IDE& substantive requirements, it of the LRE mandate at the local level...."7Apparently this should be noted that DOE has recently asserted that state data effort was unsuccessful. collection and reporting have improved.w Of course, data As to DOE's attempt to ascribe some of the state variation problems might still be trotted out by DOE as an explanation in placement rates to actual differences in student populations of state variation in placement rates, but the issue is not even and needs, one can only remind the agency of its 1989 reason- mentioned in its recent reports." To discuss it fully and ing:it would be quite remarkable if, with such a large number honestly would start a chain of reasoning which would lead of students served nationwide, differences in individual needs directly to the necessity of applying meaningful sanctions to accounted for the variation. DOE did not advance any reasons SEAs which do not ensure compliance with the LRE require- in 1992 for its quiet rejection of its 1989 conclusions and, of ments. This is a step that DOE on its own does not seem likely course, inadvertently confirmed those conclusions by reciting to take. the three factors that violate the IDEA. The most plausible explanation for state variation in placement DOE's apparent belief that the public has significant rates remains noncompliance with the LRE requirements, noncom- memory lapses regarding its pronouncements reaches its zenith pliance that DOE has amply documented through its monitoring with its 1992 claim that data reporting problems account for process but done little to stop. some of the state variation in placements. In 1991 DOE In light of the extent and longstanding nature of noncom- claimed to be working with states to resolve these problems:3 pliance nationwide, it is surprising to discover that DOE However, DOE had been making this claim for some time. In regards itself as having a "strong accountability system" in 1982 it noted a significant increase during the previous year in relation to states (Nineteenth Annual Report, p. 111-45), and the use of self-contained settings, an increase "primarily monitoring procedures that "ensure compliance" (Eighteenth attributable to ten states." These states reported that several Annual Report, p. 113; Nineteenth Annual Report, p. 111-48; factors were involved "including clerical or reporting errors"; emphasis added). Indeed, DOE's reports often simply assert DOE asserted that it would "examine these factors during the conclusions, rather than offering evidence and arguments for coming year with the goal of providing technical assistance to those conclusions: SEAs as needed" (Fourth Annual Report, p. 5). In 1989 DOE Continued on page 26
3 2? PAGE 25 TASH Newsletter, Nov./Dec. 1998 IDEA
WHAT'S WRONG WITH THE FEDS? Continued from page 25 National Council on Disability, Serving the Nation's Students with Disabilities: Progress and Prospects (Wash- The environments in which students receive ington, D.C.: National Council on Disability, 1993), services vary according to the needs of the child. For pp. 3-4, 6. example, in 1994-95, 87 percent of students with Thomas K. Gilhool, "The Right to an Effective Educa- speech and language impairments were served in tion: From Brown to PL 94-142 and Beyond," in regular classes for 80 percent of the day or more, as Beyond Separate Education: Quality Education for All, ed. compared with 9.7 percent of students with mental Dorothy Kerzner Lipsky and Alan Gartner (Baltimore: retardation. (Nineteenth Annual Report, p. viii; Paul H. Brookes, 1989), p. 246. Another writer argues emphasis added; see also p. 111-2) that the success of racial desegregation did not depend on participants' support for principles of equality: Less than 10% of students with mental retardation being "Rather, the single most important factor is very often served in regular classes certainly does not support DOE's the willingness and ability of authorities to apply fanciful 1997 notion that placements vary according to the enforcement mechanisms that ensure participants' individual needs of students. compliance with the desegregation mandate." Robert Finally, DOE's recent reports to the public also contain C. Serow, Schooling for Social Diversity: An Analysis of internal inconsistencies. For example, in its 1996 report Policy and Practice (New York: Teachers College Press, DOE asserts that regular classroom placements have in- 1983), p. 45. creased, resource room placements have decreased, and 3 For one example see the district-by-district statistics in "[ol ther placement percentages have remained stable" (Eigh- "Special Education on Long Island: Anatomy of the teenth Annual Report, p. 66; see also p. xix). But when DOE System," Newsday, November 16, 1997, pp. J4-24. attempts to justify its decision not to focus its LRE monitoring 4 Jack Sirica, "Close, Yet So Far," Newsday, November 13, on students who are completely segregated from their 1997, p. A6. nondisabled peers, it claims that this "reflects a decrease 5 DOE, Eleventh Annual Report to Congress on the Imple- nationally in separate school placements" (p. 111). Have mentation of The Education of the Handicapped Act these placements remained stable or decreased? The answer (Washington, D.C.: DOE, 1989), p. 29; emphasis appears to depend upon which chapter of DOE's report one is added. reading, and the agenda being advanced therein. 6 DOE, Fourteenth Annual Report to Congress on the Imple- The national inclusion advocacy community must mentation of The Individuals with Disabilities Education Act develop and implement strategies which insist that DOE (Washington, D.C.: DOE, 1992), pp. 22-24. finally does its job. In spite of its behavior, DOE's customers DOE, Fourth Annual Report to Congress on the Implemen- are not SEAs; its customers are students with disabilities and tation of Public Law 94-142: The Education for All their families. DOE's decision not to focus its LRE monitoring Handicapped Children Act (Washington, D.C.: DOE, on segregated students must be vigorously opposed in light of 1982), p. 33. the placements still imposed on many students with signifi- 8 DOE, Thirteenth Annual Report to Congress on the cant disabilities. DOE must tell Congress and the Ameri- Implementation of The Individuals with Disabilities can people the truth even when the truth indicts its own Education Act (Washington, D.C.: DOE, 1991), p. 29. performance, and must set forth a meaningful plan to end 9 DOE, Twelfth Annual Report to Congress on the Implemen- after twenty years LRE noncompliance nationwide. tation of The Education of the Handicapped Act (Washing- Similarly, advocates who work on the policy and systemic ton, D.C.: DOE, 1990), p. 29. aspects of issues related to LRE compliance must examine 10 DOE, Seventeenth Annual Report to Congresson the ourselves: to the extent that our strategies have not worked, Implementation of The Individuals with Disabilities we must go back to the drawing board. It may well be time to Education Act (Washington, D.C.: DOE, 1995), pp. xx, use more aggressive tactics. 14; Eighteenth Annual Report to Congress on the Imple- mentation of The Individuals with Disabilities Education Act (Washington, D.C.: DOE, 1996), p. 66; Nineteenth Mark A. Mlawer was Executive Director of the Maryland Annual Report to Congress on the IMplementation of The Coalition for Inclusive Education from 1988-1995, and Individuals with Disabilities Education Act (Washington, represented 18,000 students with disabilities on the D.C.: DOE, 1997), p. 111-3. Management Oversight Team of the Baltimore City Public " One recent cursory mention was found: after asserting Schools from 1994-97 pursuant to federal court order He is that progress has been made in educating students in currently a consultant. regular classes, schools, and resource rooms, DOE notes that this progress has been "somewhat inconsistent across ... States,"Nineteenth Annual Report, p. 111-5. 32.6 PAGE 26 TASH Newsletter, Nov./Dec. 1998 IDEA
TABLE 1: TABLE2: TABLE3:
Data are forstudents ages 6-21,1994- Data are for studentswith mental Data are for studentswith serious 95 school year.Source; U.S. Department retardation ages6-21,1994-95 school emotional disturbanceages 6-21, of Education,Nineteenth AnnualReport year.Source: U.S.Department of 1994-95 schoolyear.Source: U.S. to Congresson the Implementationof Education, NineteenthAnnual Report Department of Education,Nineteenth The Individualswith Disabilities to Congress on theImplementation ofAnnual Report toCongress on the EducationAct, 1997, p. A-50. The Individualswith Disabilities Implementation ofThe Individuals with Education Act, 1997,p. A-56. Disabilities EducationAct, 1997, p. A-58.
STATE SEGREGATED STATE SELF- STATE SEGREGATED STATE SELF- STATE SEGREGATED STATE SELF- SCHOOL(%) CONTAINED SCHOOL (%) CONTAINED SCHOOL (%) CONTAINED CLASS(%) CLASS (%) CLASS (%) New York 9.52 Louisiana 42.41 New Jersey 31.91 Louisiana 82.54 California 37.26 Louisiana 67.96 New Jersey 8.05 New Mexico 35.23 New York 30.76 New Mexico 80.41 Massachusetts 34.95 Mississippi 57.74 Illinois 5.89 New York 34.89 Maryland 18.02 Florida 80.18 New Jersey 34.05 Florida 56.97 Maryland 5.67 Florida 31.96 Illinois 16.16 Texas 79.88 New York 27.76 New Mexico 53.83 Massachusetts 4.94 Illinois 30 Nevada 14.7 Illinois 76.25 Illinois 27.65 Oklahoma 50.2 Delaware 4.3 New Jersey 27.82 Michigan 13.44 Rhode Island 75.95 Maryland 23.79 Indiana 48.64 Michigan 4.25 Pennsylvania 27.35 Delaware 13.4 Utah 74.22 Ohio 23.78 Kentucky 43.4 Minnesota 4.13 Maryland 26.23 Rhode Island 12.03 California 72.71 Oregon 16.86 Virginia 43.04 Connecticut 3.97 Mississippi 26.21 Missouri 11.78 Indiana 72.53 Delaware 15.89 Texas 41.96 New Hampshire 3.91 Georgia 26.11 Florida 11.38 Virginia 70.76 Arizona 15.19 South Carolina 41.71 Pennsylvania 343 South Carolina 25.53 California 9.87 Arizona 68.65 Pennsylvania 15 Alaska 40.05 Rhode Island 3.13 Virginia 25.42 New Hampshire 9.52 Missouri 66.23 Minnesota 13.02 Illinois 39.61 Nevada 3.01 Indiana 24.1 Minnesota 7.98 Georgia 65.95 Tennessee 12.75 Pennsylvania 39.06 California 2.85 Rhode Island 23.92 Connecticut 737 Connecticut 65.27 Rhode Island 12.26 Missouri 38.83 Utah 2.77 California 23.87 Utah 6.97 Mississippi 64.93 Connecticut 11.38 New York 38.27 Nebraska 2.55 Texas 22.76 Pennsylvania 5.94 Maryland 63.2 Idaho 10.1 Arizona 38.11 Florida 231 Michigan 21.22 Arizona 5.84 Pennsylvania 62.35 Montana 10.07 North Carolina 38 Arizona 2.42 Utah 20.04 Massachusetts 5.09 Wisconsin 61.98 Michigan 8.28 Maryland 37.95 Missouri 2.13 Hawaii 19.63 North Carolina 4.26 New Jersey 61.61 Virginia 8.08 Arkansas 36.6 Oregon 1.99 Missouri 19.18 South Carolina 4.2 Kansas 61.04 South Dakota 7.66 Rhode Island 36.15 Kansas 1.8 Arizona 18.87 Louisiana 3.67 South Carolina 60.7 Iowa 7.02 California 36.03 Iowa 1.79 Wisconsin 18.67 Indiana 3.67 Michigan 58.38 Florida 6.84 New Jersey 34.81 Ohio 1.75 New Hampshire 18.33 South Dakota 3.1 West Virginia 57.64 New Hampshire 6.71 Hawaii 34.13 Vermont 1.73 Tennessee 17.85 Maine 2.81 New York 56.74 Kansas 6.37 Massachusetts 31.33 Tennessee 1.67 West Virginia 17.72 Texas 2.8 Tennessee 55.94 Louisiana 6.36 West Virginia 30.96 Virginia 133 North Carolina 17.49 Tennessee 2.8 Maine 51.62 Colorado 6.2 Michigan 30.48 Colorado 1.49 Connecticut 17.43 Alabama 2.77 Hawaii 51.47 Vermont 6.06 Tennessee 30.09 North Carolina 1.48 Alabama 16.27 Wisconsin 2.77 Nevada 50 Missouri 5.1 Nebraska 29.86 South Dakota 1.42 Kansas 16.13 Nebraska 2.68 Alaska 48.86 Washington 5.09 Georgia 29.46 South Carolina 1.41 Washington 15.04 Iowa 2.62 Massachusetts 48.29 Maine 4.96 Nevada 29.15 Alabama 1.39 Massachusetts 14.88 Arkansas 239 Oklahoma 47.04 Arkansas 4.9 Wyoming 28.45 Maine 1.34 Kentucky 14.71 Kansas 2.28 North Carolina 46.85 Kentucky 4.87 Wisconsin 28 Indiana 1.33 Oklahoma 14.4 Wyoming 2.24 Oregon 45.87 Nebraska 4.85 Utah 27.96 Louisiana 1.26 Arkansas 13.87 Virginia 2.06 Montana 45.58 Oklahoma 4.66 Montana 27.39 Arkansas 1.2 Ohio 13.51 Vermont 1.89 New Hampshire 44.67 South Carolina 4.53 Connecticut 26.91 Wisconsin 1.2 Nevada 12.3 Oregon 1.48 Alabama 42.96 Indiana 4.18 Kansas 26.57 Wyoming 0.81 Nebraska 11.58 West Virginia 1.24 Washington 41.42 Utah 4.15 Ohio 26.09 Montana 0.74 Maine 11.31 Idaho 1.11 Wyoming 41.12 Wyoming 4.01 Washington 23.92 North Dakota 0.72 Alaska 11.17 Mississippi 1.1 Colorado 39.71 North Carolina 3.43 Idaho 19.18 Oklahoma 0.71 Montana 10.33 Oklahoma 0.89 North Dakota 36.55 Wisconsin 3.4 South Dakota 18.73 Washington 0.64 Colorado 8.52 Georgia 0.78 Arkansas 34.78 Nevada 3.37 'New Hampshire 1835 Georgia 0.62 Iowa 8.42 Washington 0.71 Nebraska 33.67 Texas 2.08 Oregon 18.06 Kentucky 0.6 Wyoming 8.29 North Dakota 0.71 Idaho 29.98 Georgia 2.04 Alabama 17.9
Mississippi 037 Idaho 7.61 Colorado 036 South Dakota 29.47 Alabama 1.97 Maine , 17.54 Texas 0.54 Oregon 7.33 Kentucky 0.41 Minnesota 28.69 West Virginia 1.28 Colorado 15.95 Idaho 033 Minnesota 7.18 Ohio 0.39 Kentucky 27.65 North Dakota 0.98 North Dakota 14.4 West Virginia 031 Delaware 6.7 Montana 0.37 Ohio 26.8 Mississippi 0.38 Minnesota 10.79 Hawaii 0.4 North Dakota 6.69 Hawaii 0.16 Delaware 17.32 Hawaii 0.28 Delaware 8.7 Alaska 0.1 South Dakota 6.34 Alaska 0.15 Vermont 10.07 New Mexico 0.12 Iowa 7.65 New Mexico 0.04 Vermont 3.43 New Mexico 0 Iowa 8.45 Alaska 0 Vermont 5.67
MIELE 3 2 9 PAGE 27 TASH Newsletter, Nov./Dec. 1998 REST COPY TASH NEWSLETTER
Priscilla Newton, Editor Policy Statement Executive Board It is TASH's mission to eliminate physical and social ob- Liz Healey, President stacles that prevent equity, diversity and quality of life Mark Partin, Vice President for children and adults with disabilities. Doug Biklen, Chair of the Executive Committee Items in this Newsletter do not necessarily reflect at- Joe Wykowski, Secretary titudes held by individual members or the Association Mike Auberger, Treasurer as a whole. TASH reserves the right to exercise editorial Nancy Weiss, Executive Director judgement in selection of materials. Kathy Boundy All contributors and advertisers are asked to abide Barbara Buswell Donna Gilles by the TASH policy on the use of people-first language Lori Goetz that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Michael Kennedy children," and "disabled individuals" refer to character- Jay Klein istics of individuals, not to individuals themselves. Terms Tim Knoster such as "people with mental retardation," "children with Deb Kunz autism," and "individuals who have disabilities" should Frank Laski be used. The appearance of an advertisement for a prod- Liz Obermayer uct or service does not imply TASH endorsement. Linda Rammler
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