DOCUMENT RESUME
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AUTHOR Newton, Priscilla, Ed. TITLE TASH Newsletter, 2000-2001. INSTITUTION TASH, Baltimore, MD. PUB DATE 2000-00-00 NOTE 311p.; For 1999-2000 issues, see ED 447 622. AVAILABLE FROM TASH, 29 W. Susquehanna Ave., Suite 210, Baltimore, MD 21204 (available to TASH members only). Tel: 410-828-8274; Fax: 410-828-6706; TDD: 410-828-1306; Web site: http://www.tash.org. PUB TYPE Collected Works Serials (022) JOURNAL CIT TASH Newsletter; 26-27 2/3-12/1 Feb/Mar-Dec/Jan 2000-2001 EDRS PRICE MF01/PC13 Plus Postage. DESCRIPTORS *Academic Standards; Adolescents; Augmentative and Alternative Communication; Autism; Court Litigation; Criminals; Early Childhood Education; Educational Change; Educational Environment; Elementary Secondary Education; Environmental Influences; Foreign Countries; Health Services; *Inclusive Schools; Predictor Variables; *Self Determination; *Severe Disabilities; Sex Education; Sexual Identity; Sexuality; Supported Employment; Victims of Crime IDENTIFIERS Guatemala; Iceland
ABSTRACT Nine year 2000 issues of the newsletter of TASH, formerly The Association for Persons with Severe Handicaps, comprise this document. Each 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 relating to equity, quality and social justice for people with disabilities. The February/March 2000 through December 2000/January 2001 issues address: (1) 1999 TASH conference highlights, including excerpts from keynote addresses by Rich Villa and Kyle Glozier, and Inclusion and Universal Cooperation (Rosangela Berman Bieler);(2) inclusive schooling, with articles such as Including Students with Disabilities in Standards Based Education Reform (Kathy Boundy), Collaboration at Whittier High School (Mary Falvey and others), Whole Schooling: Linking Inclusive Education to School Renewal (Michael Peterson), The Inclusion of a Youth with Significant Disabilities in a Community Environment (Teri Jasman and others), and Reinventing Community in the Age of Globalization (Wayne Sailor);(3) embracing sexuality, which includes articles such as Moving beyond Denial, Suppression and Fear to Embracing the Sexuality of People with Disabilities (Pamela S. Wolfe and Wanda J. Blanchett), But I Thought Sexuality and Teens with Developmental Disabilities (Dave Hingsburger and others), Absence of Evidence: Myths about Autism and Mental Retardation (Anne Donnellan);(4) issues in supported employment, which includes Are We There Yet? Trends in Employment Opportunities and Supports (John Butterworth and Dana Gilmore), The Ticket-to-Work and Supported Employment: How Will It Work? (Dan O'Brien), and "Systems Change and Supported Employment: Is There Empirical Evidence of Change? (David Mank);(5) the victimization of people with developmental disabilities in the criminal justice system, which includes Doing Justice: Criminal Offenders with Developmental Disabilities (Joan Petersilia), Serious Issues Facing Today's Offender with Mental Retardation (Leigh Ann Davis), and
Reproductions supplied by EDRS are the best that can be made from the original document. Violence against Women with Developmental Disabilities: The Hidden Violence (Catriona Johnson);(6) the agenda and workshop descriptions for the 2000 TASH conference;(7) international perspectives, which includes Providing AAC Systems for Children in a Guatemalan Orphanage: How Do We Help Others in Culturally Responsive Ways? (Janet M. Duncan), Mental Health, Mental Retardation and Protection of Rights under International Law (Mental Disability Rights International), and New Voices in Iceland: Growing Up with a Disability (Dora S. Bjarnason);(8) early childhood, which includes Variables that Contribute to Self-Determination in Early Childhood (Elizabeth J. Erwin and Fredda Brown), What Children and Families Need in Health Care from Birth through Adulthood: One Parents Experiences and Advice (Kris Schoeller), Re-thinking Guardianship (Dohn Hoyle and Kathleen Harris), and Increasing Childrens Learning Opportunities in the Context of Family and Community Life (Carl J. Dunst and Mary Beth Bruder); and (9) highlights from the 2000 TASH conference.(CR)
Reproductions supplied by EDRS are the best that can be made from the original document. TASH Newsletter
Priscilla Newton, Editor
Volumes 26 27 Numbers 2/312/1 Feb/Mar 2000Dec 2000/Jan 2001
U.S. DEPARTMENT OF EDUCATION Office of Educational Research and Improvement PERMISSION TO REPRODUCE AND EDUCATIONAL RESOURCES INFORMATION DISSEMINATE THIS MATERIAL HAS CENTER (ERIC) BEEN GRANTED BY X Thisdocument has been reproduced as received from the person or organization originating it. P. Newton CI 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.
BESTCOPY AVAILABLE DDD ON'71)T-'171-47iNT'C''71) 1-\
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Also Inside: Excerpts from Conference Keynote Addresses, 2000 TASH Public Policy/Legislative Update and The First International Conference on Self-Determination and Individualized Funding
1 2000 Calendar of TASH Chapter and Member-Sponsored Conferences
May 2000 "13th Annual Issues on Aging Conference" First International Conference "Crossing dis/Ability Borders: May 15-17 (May 17 will focus on Aging and on Individualized Funding Beyond the Myth of Normal" - Developmental Disabilities) & Self-Determination Facilitated Communication Wayne State University, Institute of July 29 - 31, 2000 Institute Annual Conference Gerontology Westin Seattle Hotel, Seattle, Washington May 1-2 Troy, Michigan For additional information on registra- Preconference Day - April 30, 2000 For more information, call tion, sponsorship, or scholarships, Sheraton University Hotel and Confer- (313) 577-1180 contact Denise Marshall, TASH, 410- ence Center, Syracuse University E-mail: [email protected] 828 -8274, ext. 103 or E-mail Further information about the Web site: wwwiog.wayne.edu [email protected] conference is available on the FC Institute web site, http:// Italy Seminar - "Education in Italy: "15th Annual Early Intervention and soeweb.syr.edu/thefci An Inclusive Approach" Early Childhood Summer Institute" May 16-June 11 July 31August 4 "Pioneer Spirit - Blazing New Site visits to schools in Rome, Florence, Williamsburg, Virginia Trails" International Parent to Parma, and a rural village near Naples. Co-sponsored by Child Development Parent Conference 2000 Contact: Dr. Carol Berrigan, Seminar Resources and the College of Will- May 5-7, 2000 Director, Syracuse University iam and Mary School of Education Reno, Nevada. Phone: 315-443-3851 For more information contact Lisa Host: Nevada University Affiliated E-mail: [email protected] McKean, Phone: (757) 566-3300 Programs Fax: (757) 566-8977 Phone: (775) 784-4921 July 2000 E-mail: [email protected] FAX: (775) 784-4997 "The Toronto Summer Institute on Inclusion, Community and Diversity" December 2000 Annual Originally scheduled for July 8-14, 2000 TASH Conference in Toronto, Canada, has been post- December 6-9 poned until July 2001. Miami, Florida The Fontainbleau Hilton Resort & Towers To have your event or conference added to our web site December 6, 2000 Pre-Conference please send information to Denise Marshall Workshops & Opening Reception at [email protected] or fax to 410-828-6706. December 79, 2000 Annual TASH Conference
ARE YOU A UNIVERSITY PROFESSOR? TAM has a Student Membership Program!
The program was developed through discussions with Regardless of how many students join, TASH provides professors who wanted to encourage professional identity a year's worth of back issues of the journal to all students through student membership in a strong advocacy organiza- signing up under this plan. This means your students will tion while assuring that their students had access to enough start the semester with a year's worth of cutting edge issues of JASH for them to be able to complete a variety of research on their shelf and can build their collection over journal article review and comparison exercises they assign. the years to come. Under this plan, students receive all of the regular membership benefits during the coming year The package works like this: in addition to an extra full year's worth of journals! Professors can either assign TASH membership as one An introduction to TASH is likely to be one of the would a text book or package of readings, or can offer it as most valued resources you can offer students as they enter an option.Either way, if ten or more students join, they the disability community in their professional capacities. receive a discount off the already low associate member rate. To receive materials or to learn more about TASH's Student The discount amount increases as the number of students Membership Program, contact Rose Holsey, 410-828-8274, signing up increases. ext. 100 or e-mail: [email protected]
PAGE 2 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCO-0 2000
wilvaa TABLE OF CONTENTS
From the Executive Director Page 4 TASH Public Policy/Legislative Who Do B Contact?? Update Page 5 M For issues of policy, chapter or committee support, or 1999 Conference Keynote Address: general concerns and suggestions, call: Nancy Weiss, Executive Director, at Rich Villa Page 8 (410) 828-TASH, Ext. 101, e-mail:[email protected] 1999 Conference Keynote Speaker: El For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 - Kyle Glozier Page 14 TASH, Ext. 103, e-mail:[email protected] Funding, Freedom, Citizenship: O For questions about the 2000 Annual TASH Conference, call: Kelly Nelson, The First International Conference Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] on Self-Determination & IM For questions about membership, conference registration or exhibiting, call: Individualized Funding Page 16 Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. Inclusion & Universal Cooperation: 100 or [email protected] 1999 TASH Conference Keynote Address For information on governmental affairs, call: Dan Dotson, Coordinator of by Rosangela Berman Bieler Page 18 Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] MI For information on marketing and promotions, permission and reprints, Call for Nominations for the TASH newsletter submissions and advertising, or publication sales, call: Priscilla Executive Board Page 21 Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. 1999 Conference Highlights Page 24 102, e-mail:[email protected] Eleanor Helps Herself Page 31 For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Don't forget to visit TASH's web site at http://www.tash.org TASH (formerly The Association for Per- The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these sons with Severe Handicaps) is an inter- alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format. Requests for permission to national advocacy association of people reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter 29 W Susquehanna Avenue, Suite with disabilities, their family members, 210, Baltimore, MD 21204, Attn: Newsletter Editor. Permission requests can also be faxed to (410) 828-6706 or sent via other advocates and people who work e-mail to: [email protected]. in the disability field. TASH actively pro- motes the full inclusion and participa- tion of persons with disabilities in all aspects of life.To receive an informa- tion packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Balti- more, MD 21204 or phone (410) 828- TASH WISHES TO 8274, ext. 8 or e-mail: [email protected]. ACKNOWLEDGE THE MISSION STATEMENT GENEROUS SUPPORT OF OUR OTFISH NEWEST LIFETIME MEMBERS Stretching the boundaries of what is possible; MICHAEL CALLAHAN - GAUTIER, MISSISSIPPI Building communities in which no one is PAT EDWARDS - SHELBY, OHIO segregated and everyone belongs; KATE MCCOY - BLACKSBURG, VIRGINIA Forging new alliances that embrace diversity;
Advocating for opportunities and rights; Lifetime membership entitles you to full international and chapter member benefits Eradicating injustices and inequities; for your lifetime. The cost can be remitted over several monthly payments. Supporting research and disseminating knowledge and information; If you are interested in becoming Promoting inclusive education; a lifetime member of TASH, contact Rose Holsey at 410-828-8274, ext. 100. Supporting progressive legislation and litigation; and,
Promoting excellence in services.
PAGE 3 TASH Newsletter, Feb./Mar. 2000 FROM THE EXECUTIVE DIRECTOR
Annually, the TASH Executive This year's priorities are listed below. Board completes a strategic In addition, the Board member respon- planning process that results in sible for drafting and implementing an goals for the upcoming year. This year the action plan for each priority is indicated. Board created a lengthy list of possible Board members are in the process of priorities well before their annual meeting designing action plans and they welcome in Chicago and sent these out to commit- member involvement. If you have tee chairs and chapter representatives for particular interest in any of these priori- input. In addition, committee chairs were ties and would like to work with TASH invited to the Board meeting in Chicago to toward affecting meaningful change in comment on their committees' priorities these areas, we welcome your participa- From the Executive Director and recommendations for organization- tion. Please contact the Board member BY NANCY WEISS wide activities and goals. indicated for each priority.
TASH Priorities 2000
Advocacy-Related Priorities Contact numbers for
1. Collaborate/build support and connections with general educators, minority board members members of congress, and other social justice organizations. working on priority Board member to contact (see contact information to the right): Donna Gilles activities: 2.Work to make sure that people have meaningful employment and living opportunities V V Board member to contact (see contact information to the right):LizObermayer Doug Biklen 3.Strengthen the voice of people labeled severely disabled Phone: 315-443-9218 Board member to contact (see contact information to the right): Doug Biklen E-mail: [email protected] 4.Promote inclusion within higher education Board member to contact (see contact information to the right): Liz Healey Donna Gilles Phone: 352-846-2760 5.Work toward closing institutions and other segregated living and work settings E-mail: [email protected] Board member to contact (see contact information to the right): Liz Obermayer
6. Enforce IDEA Liz Healey Board member to contact (see contact information to the right): Jorge Pineda E-mail: [email protected]
7. Promote passage of MiCASSA Liz Obermayer Board member to contact (see contact information to the right): Joe Wyhowshi Phone: 410-583-0060 E-mail: [email protected] Operations-Related Priorities 1. Maintain capacity for legislative advocacy Jorge Pineda Board member to contact (see contact information to the right): Donna Gilles Phone: 703-525-3406 E-mail: 2.Develop working relationships with committees to assure committees have the [email protected] support needed to accomplish tasks Board member to contact (see contact information to the right):LizObermayer Joe Wykowski 3.Fiscal development Phone: 503-292-4964, ext. 101 Board member to contact (see contact information to the right): Joe Wyhowshi E-mail: 74452 .3365@compuserve . com 4.Increase membership Board member to contact (see contact information to the right): Jorge Pineda A A A 5. Support the development and promotion of an electronic journal Board member to contact (see contact information to the right): Doug Biklen 6.Improve relations with and support of chapters Board member to contact (see contact information to the right): Liz Healey
PAGE 4 6 TASH Newsletter, Feb./Mar. 2000 GOVERNMENTAL AFFAIRS UPDATE
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BY DAN DOTSON, COORDINATOR, GOVERNMENTAL AFFAIRS
TASH's new Coordinator of Governmental Affairs, Dan bill closely as it moves through Congress and keep its Dotson, will provide members with regular updates from members informed of the bill's progress. As MiCASSA the governmental affairs and public policy arena. If you is ushered through Congress, TASH will be working have questions about specific activities, or would like to along with other organizations to see that the true become involved in TASH's governmental affairs commit- voice of the grassroots disability community is heard. tee, please contact Dan at 410-828-8274, ext. 104 or For more information about MiCASSA, please
MiCASSA Update The Supreme Court had decided to hear two disability The Medicaid Community Attendant Services and discrimination cases Florida Department of Correc- Supports Act (MiCASSA) was introduced in Congress tions v. Dickson and Alsbrooh v. City of Maumelle both by Senator Tom Harkin (D-IA) and Senator Arlen of which involved questions about the constitutionality Spector (R-PA) as Senate Bill 1935. MiCASSAs goal is of Title II of the ADA. Fortunately, both of these cases to provide flexible, consumer-responsive services have been settled and will not be moving forward. directed by the individual receiving the services. In However, there are other cases looming on the horizon short, MiCASSA will allow for consumer control of that could have a major impact on the civil rights of how, when, where and by whom services are delivered. people with disabilities. At the 1999 TASH Conference, TASH identified At issue is whether Congress had the constitutional the passage of MiCASSA as one of its legislative authority under the Fourteenth Amendment to enact the priorities for the coming year. TASH will monitor this ADA. If the Supreme Court says Congress did not, indi- Continued on page 6
PAGE 5 TASH Newsletter, Feb./Mar. 2000 GOVERNMENTAL AFFAIRS UPDATE
TASH Public Policy/Legislative Update Here's How You Can Help Educate disability rights advocates in your state Continued from page 5 that the threat to the ADA is real and the time to viduals may no longer be able to enforce the ADA at the act is now. The states' brief was due on March 3 in state level.More importantly, a negative ruling could Dickson and is due on March 31 in Alsbrook. call into question the constitutionality of Title II of the Work in conjunction with other disability rights ADA as well as other disability rights statutes. advocates in your state. Coalitions formed around Dickson and Alsbrook are the latest in a series of Olmstead v. L.C. are a great place to start. cases in which states have challenged Congress' power Determine the best way to approach your state. Ap- to enact legislation regulating state conduct. Most proach your governor, attorney general, state legis- recently, the Supreme Court held in Kimel v. Florida lators, mental health and developmental disability Board of Regents that Congress did not have the directors, and other state officials with whom you authority to apply the Age Discrimination in Employ- have relationships, including civil rights enforcement ment Act to the states. attorneys in the state attorney general's office. What does this mean for people with disabilities? If Ask your state to sign on to a brief supporting the the Court finds as it did in the Kimel case, states may no constitutionality of the ADA. Explain how impor- longer be subject to the ADAs requirements. Depending tant the ADA is to you, how the law has had a on the scope of the Supreme Court's future rulings: direct impact on your life, and how dismayed you are by the thought that your state would take the States may no longer have to comply with the ADAs position that it should not have to comply with the integration mandate. People who are unneccessarily law's requirements. institutionalized in state hospitals, nursing homes, If your state will not sign on to a brief supporting and other state institutions may no longer have re- the ADA, ask your state officials to not sign on to course under the ADA. the "state's rights" brief.It will send a powerful States may no longer have to make their buildings and message to the Court if only a handful of states services accessible. State capitols, state courts, and state argue that the ADA should not apply to them. universities, among others, may no longer have to have Do not be dissuaded by the fact that your state wheelchair ramps, provide interpreter services, or pro- already may have challenged the constitutionality vide written materials in accessible formats. of the ADA in pending litigation. Governors and State employers may no longer have to comply other state officials may be unaware and with the ADAs mandate against employment unsupportive of the litigation positions previously discrimination. State employers may be able to taken by their state attorney generals, and may be refuse to hire and/or fire people with disabilities at able to influence the position taken by your state will, and may no longer have to provide employ- in Dickson and Alsbrook. ees with disabilities-reasonable accommodations Take advantage of any promises made during your in the workplace. advocacy around the Olmstead v. L. C case. In many discussions around Olmstead, advocates were While the cases currently before the Supreme assured that they would be consulted in the future Court only address the applicability of the ADA to the concerning similar matters. Make use of those states, a negative decision could lead to the Court commitments now. striking down Title II of the ADA altogether. We are at risk of losing not only Title II as it applies to the states, Secure a commitment from your state to continue but as it applies to all public entities. meeting and working on disability rights issues. Even if People with disabilities worked too long and too your state signs on to a brief opposing the constitution- hard to enact the ADA only to see it succumb to a ality of the ADA, all is not lost. Your state may feel com- "states' rights" argument. As they did in Olmstead v. pelled to sign on to a brief because of larger "state's rights" L.C., disability rights advocates can make a difference. issues. If that happens, try to secure a commitment from States will undoubtedly file a brief with the Supreme your governor and attorney general that they will con- Court, urging the Court to find that the ADA does not tinue to meet and work with you on issues affecting the apply to them. Here's what you can do to counter the rights of people with disabilities in your state. impact of that brief:
PAGE 6 8 TASH Newsletter, Feb./Mar. 2000 oxvr
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This four day summer institute will provide participants with state-of-the-art information and strategies in the area of educating students with autism/PDD in general education classes Each morning participants will hear a keynote presentation from a national leader in the field of autismIn the afternoon, working in small groups, participants will synthesize this new information and develop strategies for supporting students with autism/PDD in their schools and families
KEYNOTE PRESENTERS Temple Glandin,Thinking m Pictui es My Life with Autism Rae Sonnenmeier and Michael A'lcSheehan, Supporting Communication with Students with Autism/InD It's About Building Relationships Gail Gillingham, Autism The Impact of E\pectations and Feats Carol Gay, from Both Sides Now How to Teach Social Understanding REGISTRATION INFORMATION Indmrdnal Regisitabon Rale$300 /person Team Rate (i of more ?collations) $275 /person For information, please call Deb Wilkinson at 603-228-2084 or 800-238-2048 Visit us on the web hap / /rod unh edu
1II 1999 CONFERENCE KEYNOTE ADDRESS
The Future of Education culturally shaped ways of seeing and I am honored to have an opportunity speaking, and who have had various to speak to you this morning. I am also a experiences in the world. As we enter this bit humbled by this invitation. Much of century we have greater diversity within what I know about education, social our schools in terms of culture, language, justice, and inclusion has been taught to and perception of ability, gifts, and talents me by the members of this organization than we did at the start of the last century. through your writing, your teaching, your However, the basic challenge remains the advocacy, and through your modeling. I same. Gerlach reminds educators, "Our was asked to speak to you about the task is to provide an education for the kinds of possible future of education. I concluded, kids we have, not the hinds of kids we used to however, that I had to speak instead about have, want to have, or the kids that exist in the possible futures of education. The our dreams." future is not certain.It is the actions that Please think about the following ques- we take that will determine the future in tions. "What is the dream that we have for which our children and we will live.I our students? What are the desired goals speak of the children that are members of or outcomes of education? What are the our families, as well as the children for skills, competencies, talents, attributes, and whom we have the responsibility to dispositions that our students are going to educate. As Carl Sandburg said, "There is need to lead quality lives in the future?" only one child in the world and that child's I'd like you to reflect on these questions name is All children." for a moment and then to turn to someone I agree with the noted anthropologist, who is sitting near you and share the skills, Margaret Mead, who said, "We are now at competencies, talents, and attributes that a point where we must educate our children in you identified. what no one knew yesterday and prepare our There is, however, schools for what no one knows yet." In Circle of Courage thinking about the future, I had to think a danger to any society For over a decade, my colleague and about the present and I had to reflect on wife, Jacque Thousand, and I have been the past because, as educational historian that over-emphasizes asking hundreds of thousands of people Frank Rippa tells us, "There is a consider- academics at the cost to identify the goals or outcomes of able advantage in trying to understand the education that are important to them. current situation through a historical or expense of social and We have been impressed with the perspective." Blakenship and Lilly also similarity of responses from respondents remind us that "through practically all of the life skills. "Reading, in the United States, Canada, Latin history of civilization, education has been for writing, and arithmetic America, Asia, Europe, Australia, New the elite, and educational practices have Zealand, the Middle East, and reflected an elitist orientation." Yet, there are important only if Micronesia. Wherever we ask the have always been visionaries, including question, people identify the same kinds many of the members of this organization, they serve to make our of desired goals or outcomes. Their whose thinking was ahead of their time children more humane." responses can be represented by the and place in history. "Circle of Courage" visual borrowed from Nearly five hundred years ago, Comenius, the founder of Charles University, the second oldest university in about the challenges that Europe, had a vision about education. faced teachers 100 years ago Comenius stated, "Education should be as they entered the 20th available not just to one man or a few or century. Tomorrow's teachers even to many men, but to all people together face the same challenges that as well as to each separately. Young and old, a teacher in a one-room rich and poor, irrespective of birth, men and schoolhouse faced at the turn women in short, everyone whose fate of the last century. The it is to have been born a human being." challenge remains the same In preparing for this keynote, I how to reach out to thought about the challenges that face students who span the teachers as they enter the first century of spectrum of learning readi- the new millennium. I also thought ness, personal interest, Continued on page 9
PAGE 8 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
1999 KEYNOTE ADDRESS shot and burned by high school and college graduates. So I am Maslow's Hierarchy of Needs Continued from page 8 suspicious of education. My request is to help your students the Native American culture, the Lakota become human. Your efforts must in particular. The Lakota wanted to never produce learned monsters, SELF- ACTUALIZATION create courageous youth by instilling skilled psychopaths, educated Personal Talents within them four characteristics Eichmanns. Reading, writing, and BELONGING belonging, mastery, independence and arithmetic are important only if Friends, Family, Spouse, Lover generosity. they serve to make our children /SELF- ESTEEM I believe everything that you more humane." Achievement, Mastery identified as goals of education will fall If the Circle of Courage Recognition, Respect into one of those four categories. When goals are, indeed, the desired SAFETY you identify outcomes such as the ability goals of education, then every Security, Freedom From Fear PSYCHOLOGICAL to get along with others, to form relation- single thing we do in education Food, Water, Warmth, Shelter ships, feel good about yourself and be should be evaluated in terms of part of a community, you are speaking of whether or not it leads to the belonging. When you identify outcomes desired outcomes of belonging, (The Inversion of Maslow's Hierarchy; N. Kunc) such as reaching one's potential, develop- mastery, independence, and ing mastery and competence, being a generosity. The curriculum, instruction, well-rounded individual, you are speak- assessment, discipline, staffing patterns, ing of mastery When you identify and the places where we choose to "We are now at outcomes such as the ability to be a educate our children should be assessed lifelong learner, to be flexible, to be a risk in terms of their ability to facilitate Circle a point where we taker, and to have a choice in where you of Courage outcomes. live, work, recreate, and with whom you Belonging is an essential component must educate our associate, you speak of independence. of every theory of motivation of which I children in what no When you identify outcomes such as am aware. Norman Kunc has encouraged being a caring member of society, socially many of us to revisit Maslow's Hierarchy one knew yesterday responsible, giving something back to of Needs. Maslow taught us that once one's community, valuing of diversity, you belong, you develop a positive self- and prepare our empathy and caring, you are speaking of esteem. Then you begin to achieve and schools for what no generosity The Lakota purposely then and only then can you represent all four of these concepts in a become a self-actualized human being. one knows yet." circle, a medicine wheel, to remind us Norman reminds us that historical that if one or more of these components exclusionary responses to diversity are missing, the circle will collapse and oftentimes have denied children, youth, we will not achieve the future that we and adults of belonging because we have want for our children. inverted Maslow's Hierarchy of Needs. going to benefit from a unique body of We must assure that all of these Every time you say to a person, "You knowledge, from smaller classes staffed outcomes are equally emphasized and need to go some place else because you by specially trained teachers who used valued within our educational system. look different, walk different, talk specialized materials." That was what we Society, due to political convenience and different, act different, or learn different," believed when the federal legislation economic consideration, oftentimes you are saying to them, "You cannot guaranteeing students with disabilities emphasizes mastery and independence at belong until you achieve," thus inverting the right to a free appropriate education the cost and expense of belonging and Maslow's Hierarchy. This inversion of in the least restrictive environment was generosity. There is, however, a danger to Maslow's Hierarchy creates a powerful enacted in 1975. But in a review of the any society that over-emphasizes academ- Catch 22 because we cannot achieve until efficacy studies, conducted from the mid- ics at the cost or expense of social and life we belong. to-late 80's, Lipsky and Gartner con- skills. That danger is clearly articulated We also have ample evidence that cluded, "There is no compelling body of in a letter written to teachers by Haim many special and general education evidence demonstrating that segregated Ginott: "Dear teacher, I am the survivor of practices have robbed students of special education programs have significant a concentration camp. My eyes have seen mastery. Let us reflect for a moment on benefit for students." what no man should witness gas cham- the basic premise of special education In the mid-90's, Baker, Wang, and bers built by learned engineers, children that resulted in the development of a Walberg conducted three meta-analyses poisoned by educated physicians, infants continuum of placements. The premise killed by trained nurses, women and babies was "students with [disabilities] were Continued on page 10 PAGE 9 i1 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
1999 KEYNOTE ADDRESS skills necessary to confront the five reasons why schools have been so Continued from page 9 As Grant Wiggins intractable. across every disability category, to The first reason for the intractability compare the achievement of children reminds us, of schools is inadequate teacher prepara- with disabilities educated with typical "We will not successfully tion. The solution to inadequate teacher children to the achievement of students preparation lies within a triangle of with disabilities who were educated in restructure schools responsibility comprised of preservice, resource rooms, special classes, and inservice, and personal dimensions. We special schools. The research revealed to be effective until have to examine our preservice education that "special needs students educated in we stop seeing diversity in light of the fact that a large number of general education environments did teachers who will soon be entering our better both academically and socially in our students as profession and our nation's classrooms than comparable students in non- are increasingly more diverse. Are we inclusive settings." a problem." adequately preparing new teachers to Frequently, people identify produc- successfully inherit diverse classrooms tivity and employment as an indicator of and to meaningfully relate to and independence. A national longitudinal motivate all of their students? study revealed that more than 40% of the will have less or no work. Maybe in the graduates of special education are future, we will have the foresight to view unemployed one year after high school. generosity, community service, giving Triangle of Responsibility In contrast, studies have shown that something back to one's community, and students who are included have a higher caring for children and the elderly as rate of post-secondary employment than strong indicators of productivity. Self those who are educated in more restric- I must admit that I am troubled tive environments do. when I visit some so-called "inclusive When I started to think about schools."I am troubled by the lack of productivity from a futuristic perspective, opportunity for many children who do it became clear to me that being a not have English as a primary language, productive member of society would children who are identified as disabled, extend beyond one's work. What kind of and children who are considered at-risk We also have to deal with inservice work is going to exist in the future? to give back to be generous, contributing issues.I don't wish to be depressing, but Consider that 80% of the employees of members of their community. As Dr. the half-life of an educator's work life is McDonalds will be replaced by robotics. King reminds us, "Anybody can be great now estimated to be five years. We know The labor-intensive work of the garment because anybody can serve. You don't have in the year 2000 only half of what we will industry has moved to developing to make your subject and verb agree to serve. need to know in 2005 to do our jobs. nations because of cheaper labor and You don't need a college degree to serve. You This requires intensive, on-going quality machines are predicted to replace those only need a heart filled with grace and a soul staff development for personnel working workers, as well. We live in a world of generated by love." I would add that you in our nation's schools to keep pace with over six billion people, many of whom also need the opportunity to be generous. change. Finally, those of us working in We must recognize the gifts in every education must assume personal respon- child, assist them in developing their sibility for becoming what we want our competence, and give them opportunities students to be life-long learners. Our Many of our schools to be generous. working conditions in education have changed. If we are going to call ourselves assess success based The Intractability of Schools professionals, than we must continually solely upon oral and Five hundred years ago, Comenius acquire the skills to do the jobs we are said, "In spite of all of our efforts, they paid to do. written efficiency and remain basically the same." He was The second reason for the intractabil- speaking of the school reform efforts of ity of schools is inappropriate organiza- literacy in English, his day. Seymour Sarason, speaking of tional structures, policies, practices and ignoring our history the school reform efforts of our day noted procedures. Organizational structures that, "Systems change is not for the concep- must be examined to determine whether as a multilingual nation tually or interpersonally fainthearted." If or not they facilitate or erect barriers to we want to create positive futures for our the attainment of the Circle of Courage and a global economy. children, we must demonstrate the conceptual, technical, and interpersonal Continued on page 11 PAGE 10 12 TASH Newsletter, Feb./Mar. 2000 1999 COFERENCE KEYNOTE ADDRESS
1999 KEYNOTE ADDRESS assure that that content emphasizes rather than bad examples of a good practice." belonging, mastery, independence and A third reason often cited for the Continued from page 10 generosity. There must be universal intractability of schools is inadequate access to the processes of attention to the culture of schooling. Inappropriate Organizational learning helping students Michael Fullan, a guru of systems change, Structures, Policies, Practices, make sense out of what it is reminds us that true school reform is not that they are learning. And, about this innovation or that innovation & Procedures there must be universal but rather a culture change. Changing access to the products of the culture of schools is essential because Teachers tell, students repeat education how students as David Rothsteder notes, the prevalent Teachers run the class demonstrate what they have culture of schooling is "consumed with who 01Verbal/Linguistic fst Mathematical/Logical learned and how we mean- doesn't belong, rather than making sure Intelligences are valued ingfully and authentically everyone does belong." Further, as Grant 111 Success is dependent upon oral and written assess their progress. Wiggins reminds us, "We will not success- proficiency and literacy in English There are many promis- fully restructure schools to be effective until 1.Students are prepared for the assembly line ing practices from general we stop seeing diversity in our students as a of an agrarian society education, special education, problem." and multicultural and To create the culture we desire, we need to operate out of assumptions and outcomes. Think about the basic overall beliefs that will facilitate the attainment of structure of schooling today compared to the Circle of Courage outcomes. What when you went to school. How much kinds of assumptions and beliefs will lead have schools changed? In how many We need to ask us to the attainment of the Circle of places do the same organizational ourselves, "Where is Courage outcomes? In accordance with characteristics that existed when we were Anne Donnellan's "Criteria of the Least students still exist? the disability? Is it in Dangerous Assumption," we must assure Many of our schools still are prepar- that every child is viewed as competent ing our students to go out and inherit an the student or is it in and our foremost responsibilities are to agrarian society or attain jobs on an the system that we cause no harm to that child and instead, assembly line rather than preparing them help that child fulfill his or her need to to live in a globally complex, interdepen- have created and belong. We must assume all behaviors dent world. Many of our schools assess are an attempt to communicate and success based solely upon oral and maintained?" become more skilled at understanding written efficiency and literacy in English, the communicative intent of behavior ignoring our history as a multilingual and in the facilitation of communication. nation and a global economy. All the way We must believe in families and work back to 1664, when New Amsterdam, bilingual education that can facilitate with and for them rather than blaming Manhattan Island passed from the Dutch universal access to the general curricu- them for their troubles. Finally, we must to the English, 18 different languages lum. We must hold ourselves account- believe creativity and collaborative were spoken. able for quality implementation of these teaming are essential to the formulation A decade ago Benjamin reminded us, practices so that, as Ian Pumpian says, of personalized responses to the needs of "The future will arrive ahead of schedule." "we have good examples of good practices children. According to Pierre Tielhard de What's going to help us get to Chardin, "Our duty is to proceed the future we desire? The as if limits to our ability do not reauthorization of the Individu- exist [because] we are collaborators als with Disabilities Education Promising Practices in creation." Act (IDEA) for the first time Multiple Intelligences Theory Multicultural Education What kind of a culture requires that children with Authentic &Alternate Assessment Multi-age Grouping would exist in schools if we had disabilities must have access to Construcdvist Approach Looping Multi-level Instruction a Student Bill of Rights guaran- the general curriculum. We Block Scheduling Curriculum Overlapping m Team Teaching teeing that every student would must utilize the principle of Differentiated Instruction Collaborative Planning have access to a) effective universal design to guarantee Literature Circles m Peer Tutors instruction, b) personalized universal access to three Bilingual Education Peer Buddies accommodations, and c) a Facilitated Communication dimensions of curriculum Cooperative Group Learning motivating school climate? content, process, and product. Tiered Assignments m Technology Many people are concerned with All students must have access m Positive Supports student rule violating behavior. to the content and we must Continued on page 12 PAGE 11 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
1999 KEYNOTE ADDRESS re-visiting the teaching of pioneers in students, "You do not learn the way that I progressive school and social movements teach, so go away" Let's take a moment Continued from page 11 such as Maria Montessori, Paolo Freire, to examine the current situation: What percentage of rule violating and John Dewey. behavior would disappear if these student For example, Apple and Bean 1. 2% of our nation's students are being rights were guaranteed? describe the implications of Dewey's home schooled; There is a strong connection between notions of democratic schooling by 2. 25% of our nation's children are culture and curriculum. We must noting that "those involved in democratic enrolled in some form of alternative examine our curriculum to be sure that schooling see themselves as participants in a school (e.g. charter schools, magnet the concept and practice of "care" (a community of learning. By their very nature schools); and desired cultural foundation) is visible. these communities are diverse and that 3. 50% of our nation's children are not Nel Noddings instructs us that, "all diversity is prized, not viewed as a problem. full-time placed in general education children must learn to care for other human Such communities include people who reflect classrooms. They are part- to full- beings and all must find an ultimate concern differences in age, culture, ethnicity, gender, time placed in special, bilingual, in some center of care; care for self, intimate socio-economic class, aspiration, and multi-cultural, gifted, vocational, and others, associates, acquaintances, distant abilities. These differences enrich the at-risk educational programs. others, for animals, for plants, the physical community and the range of views it might environment, objects, instruments, for ideas." consider. Separating people of any age on the We need to ask ourselves, "Where is Some people may view words such basis of these differences or using labels to the disability? Is it in the student or is it as care and belonging as "soft" words, stereotype them simply creates divisions and in the system that we have created and incompatible with "hard" words such as status systems that detract from the demo- maintained?" Disability is a social curriculum. I'd ask those critics to cratic nature of the community and the construct that changes from one to the review the quote I just read from Nel dignity of the individual against whom such next culture and across time. World Noddings and challenge them to identify practices work so harshly. While the Health Organization data reveals that the an area of curriculum that isn't repre- community prizes diversity it also has a proportion of children within a society sented through care. We can simulta- sense of shared purpose. The common good identified as disabled increases in neously teach children to care while they is an essential feature of democracy and for proportion to that society's level of learn other important curricular prin- this reason the community of learners in a "development." Wouldn't you think that ciples, concepts, and facts. Think how democratic school is marked by an emphasis a more developed society would be better much more meaningful and relevant our on cooperation and collaboration rather than equipped to embrace diversity and view student's learning would be if they competition." people as "differently-abled" rather than understood the connection between what I'd like to make one final point about disabled? they were learning and the concept of culture. If we are serious about creating a We must be cognizant of the fact that care. culture that will lead our children and reform initiatives create disability. For We also must examine our curricu- youth to the attainment of the Circle of example, when the Soviets launched the lum in terms of social justice and its Courage outcomes, we also must commit Sputnik satellite, the United States function as a catalyst for positive change. to creating a school culture that will lead responded with major school reform Freire reminds us that "Any curriculum the adults to these outcomes, as well. We initiatives, emphasizing math and science that ignores racism, sexism, the exploitation need to answer some important ques- education. One of the consequences of of the workers and other forms of oppression tions. In what ways can we create a this action was a large increase in the inhibits the expansion of consciousness, greater sense of belonging among the number of students identified as having a blocks our creativity, decreases social action people who work and learn in our learning disability. In the mid-80's, in for change and supports the status quo of schools? In what ways can we help the response to economic competition from oppression." The creation and mainte- adult as well as the student members of Japan, reports such as A Nation at Risk nance of school cultures which welcome, the school community to achieve greater sparked major reform initiatives in our value, and support the diverse academic mastery and confidence? In what ways nation's schools. The result this time was and social learning of all students in can we encourage the student and adult not only an increase in the number of shared environments and experiences for members of the school community to be people labeled disabled, but also an the purpose of attaining the goals of independent, critical thinkers, problem increase in the number of categories or education necessitates changing the solvers, risk takers and generous, types of disability. status quo. contributing, collaborating members of Today, the focus of school reform is Our effort to change the culture of their school community? on standards. Is there anyone sitting in schooling will be enhanced if we in the The fourth reason for the intractabil- this audience who doubts that this, too, inclusive school movement joined forces ity of schools is that we have been busy will lead to an increase in the number of with other progressive movements such perfecting a model that has allowed us to students perceived as disabled? We can as Critical Pedagogy and Democratic discard all evidence that what we're doing Schooling. We have much to learn from isn't working. In essence we say to Continued on page 28
PAGE 12 14 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCH 2000
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PAGE 13 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
Keynote Remarks: Kyle Glozier
Good morning, TASH. My the United States.I believe that name is Kyle Glozier.I go to anyone can do anything they want West Green Middle School in ", to do. Disability pride is not hay- New Freeport, Pennsylvania.I ing to feel sorry for yourself.It's am in the eighth grade and I liking yourself for who you are. have been included in regular Discrimination is when people education since kindergarten. don't allow people of other races, Parents don't want to put their religions, sexual orientations or kids with disabilities in regular abilities to go to all the places they schools because they listen to want to go. When people with dis- the experts who say they will abilities can't get on the bus, they not learn in regular schools. get angry that they can't go every- That is totally false. where they want to go just like School is important because Rosa Parks. you need to learn and we learn just as much from Society is changing slowly, but we need even our classmates as we do from our teachers. more change to keep on pushing into the new Schools need to stop babysitting and put kids with millennium. We need to keep on pushing until all disabilities in classrooms with kids that do not people are free from institutions and fully included have disabilities. This will help to enforce the into society. That reminds me of the song that a IDEA. Doing this will help kids receive the good friend of mine sings, "Tear Down the Walls." knowledge they need to survive. They will learn how to get along and interact with kids that don't One verse says, have disabilities. Kids without disabilities will "Can't you see the justice coming at you now? learn that people with disabilities are okay and It's coming down the road. there is no reason to be afraid of them. It's coming down the street. Including kids with disabilities from the very It's coming for your kids. beginning will begin to change society as a whole. They're going to hate you if you don't act now." Together we can teach society to not push people with disabilities out of the way, forgetting that we When I ask my brother, Nigel, "how do you feel deserve our rights as citizens of the United States. having me as your brother?" he answers, "Good. I When I go home and see kids that are in segregated like you. You're nice." And when I asked my classrooms, I wonder why these kids aren't in brother, Jason, the same question, he says "you're regular education like I am. More moms and dads okay, but you're really scary when you're mad." like mine need to get involved with disability rights When I asked an adult friend who uses a so they can see other people in wheelchairs and wheelchair how do your kids feel having you as a have role models and heroes like Justin Dart. After mom, she said they treat her like anyone else, and high school, you have to move out of your parents' treat her brother with a cognizant disability just houses and go to college or tech school. If you stay like everyone else, too. If all people are exposed to with your family, they will die eventually and what people with disabilities at an early age, the disabil- will happen to you? More than likely you will end ity makes no difference at all. They see just up in a nursing home. another person. They see past the disability. This I hope one day to study journalism or even go is how we need to see society change. It is our to law school. Who knows? I may be the first per- turn now. Thank you. son with cerebral palsy to become the president of
PAGE 14 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCH 2000 Stan Incluion: wehye both?
DOROTHY KERZNER LIPSKY, PH.D. AND ALAN GARTNER, PH.D. 0 s The move toward higher standards in our nation's schools has raised a major dilemma for educators committed to the inclusion of students with tin we disabilities. How can these students truly succeed in a learning environ- ment where academic standards and formalized testing are increasing? jo, both 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. Through a dynamic and powerful
D i presentation Drs. Lipsky and Gartner discuss: The Consequences of Higher Standards, The Seven Factors of Successful Inclusion, The Reauthorization of I.D.E.A., The Restructuring of Our Schools. Visit schools across the country and observe first- DOROTHY ALAN manusAcugtosrs..:wanted. hand how the learning needs of all students are KERZNER LIPSKY GARTNER forguictetines.csorn being successfully met in general education inc. www.npr environments. Learn how special education is a serviceABOuriliEAFriwas:i, not a location. Understand that the inclusion of students is porothy"Kerzner,Lipsky is Dire'tior of not determined solely by where they are placed, but by their full and com- the Motional Center on Educational; plete access to the same curriculum as the general education population. Restructuring and inclusion, and Nan Whether a regular or special educator, this video is a must for pre-service Gartner fir Research. Both are and inservice training. at The Graduate School and University Center, The City Universitynf Niniv York. 1998, VHS, 40 minutes Order #VSIN-TASH1 $99.00 COMPANION BOOK: Inclusion and School Reform: Transforming America's Classrooms DOROTHY KERZNER LIPSKY, PH.D. AND ALAN GARTNER, PH.D.
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Order from: National Professional Resources, Inc., 25 South Regent St., Port Chester, NY 10573 Phone: 1-800-453-7461; Fax: 914-937-9327; World Wide Web Site: www.nprinc.com. Amex, Visa, MasterCard, prepaid and purchase orders accepted. Shipping & handling: Add $4.50 per book; S5 per video. For book orders of S50 and above, add 10% -- not to exceed S40. Canada add 20% to all orders. Federal Tax ID #132619258. Free catalogs available upon request. Authors Wanted: For manuscript submission guidelines, call Acquisition Editor 1.4300-453-7461.
PAGE 15 1 11 TASH Newsletter, Feb./Mar. 2000 FREEDOM CITIZENSHIP FUNDING 2 F
E
2 L- a HOCEIZSIbl ONIGNfl dtHEME/Z1110.
p - General Overview Over 1,200 people from around the world are expected to participate in this groundbreaking conference, including people with disabilities, family members, community advocates, professionals, service providers, researchers, admin- istrators, and government officials. The conference will be rich in opportunity and out-comes, with topics and speakers being broad enough to encourage participation from other isability areas including developmental disabil- ity, the independent living movement, seniors, and people involved in the mental health movement. During the past decade individualized funding (also known as direct payments or individualized budgets) and self-determination have become focal points for the worldwide disability movement. Individualized funding is now recognized as a fundamental require-ment for self-determination, enabling people to purchase, and therefore gain control over, the supports needed to enjoy meaningful lives in the community. Desired Outcome: 1. The conference will yield an international "Declaration" through the use of three small groups called Prospectors Groups. The groups have been so chosen, because, like people sieving a stream for grains of gold, they will be searching for the special grains of truthfrom the information shared at the conference that need to go into the Declaration.The Declaration may include such items as:
O The key principles and aims of individualized funding O Methods of putting individualized funding into action, which support those principles and aims O Actions that stakeholder groups (e.g. people with disabilities, governments; service providers) should take to support individual- GUIDING PRINCIPLES ized funding The conference planning committee is using the following three principles when planning the events and structure 2. A written report of conference proceedings will be of the conference: produced by Steve Dowson and Brian Salisbury, Co- chairs of the program planning committee. All atten- * Inclusive and Accessible dees will receive this report approximately 2-3 * International months post conference. * Searching for Consensus
1 Q PAGE 16 TASH Newsletter, Feb./Mar. 2000 For a copy of conference The Westin Seattle brochure or more information about 1900 Fifth Avenue the conference, please contact Denise Seattle, Washington 98101 Marshall at [email protected] or Phone: (206) 728-1000 1-800-482-8274 x 103 Fax: (206) 728-2259 or visit the website at washi @westin.com http://members.home.net/directfunding/ July 29-31, 2000 Preliminary(Were ce Aen a Saturday, July 29, 2000 1 p.m. 9:00 p.m. Conference Registration Begins 2 p.m. - 5:00 p.m. Pre Conference Sessions 6:00 p.m. - 9:00 p.m. Opening Reception
Sunday, July 30, 2000 7:30 a.m. - 9:00 a.m. Conference Registration 8:45 a.m. - 10:15 a.m. OPENING PLENARY 11:oo a.m. - 12:30 p.m. Concurrent Sessions 12:30 p.m. 2:00 p.m. Lunch 1:45 p.m. - 3:15 p.m. Concurrent Sessions 3:45 p.m. - 5:15 p.m. Concurrent Sessions
Monday, July 31, 2000 8:45 a.m. - 10:15 a.m. Concurrent Sessions 10:45 a.m. - 12:15 p.m. Concurrent Sessions 12:45 p.m. - 3:00 p.m. Lunch and Closing Plenary Presentation of conference declaration and closing keynote remarks
Many groups from around the world have signed on to sponsor or support this exciting conference. Sponsor's contri- butions will be devoted entirely to assist self-advocates, parents, and international participants to participate in the conference. If you are interested in supporting or sponsoring the conference, please contact Nancy Weiss at 1 -800- 482 -8274 or [email protected]
Founding Organizations: TASH Disability Advocacy Worldwide, Self-Advocates Becoming Empowered, British Columbia Coalition for People with Disabilities, National Program Office on Self-Determination; A program of the Robert Wood Johnson Foundation, Administration on Developmental Disabilities, Canadian Association for Community Living, The Arc of the United States, American Association on Mental Retardation, The Inter-American Institute on Disability, The World Institute on Disability, and Inclusion Internationale Sponsoring Organizations: Glendale Foundation for Research and Community Support, Center on Human Policy, British Columbia Association for Community Living, British .Columbia Paraplegic Association, and the Presidential Task Force on Employment of Adults with Disabilities Supporting Organizations: People First of Washington, The Arc of Washington State, Washington Initiative on Supported Employment, CARE Langley Association for Community Living, Community Living Society, VELA Microboard Associa- tion, MSA Society for Community Living, Greater Vancouver Community Services Society, Speaking for Ourselves, Planned Life Advocacy Network, Values Into Action, Central England People First, d the Community Living Journal
PAGE 17 TASH Newsletter,Feb./Mar. 2000 1999 TASH CONFERENCE KEYNOTE ADDRESS
n nature, all living creatures have the 70 would be unable to read same structure of genetic codethe 50 would suffer from malnutrition 1DNA. At a certain point of the Inclusion 1 would be near death; 1 would be process the codes start to differentiate, near birth bringing specific identity to each species, 1 would have a college education each creature. One of the beauties of life Universal 1 would own a computer is that this same DNA that generates so many similarities among living beings is And he concludes: "When one what also makes them so different and Cooperation considers our world from such a compressed individual. perspective, the need for acceptance, While generating her family, Mother understanding and education becomes Nature made sure that life would contain, BYROSANGELA BERMAN BIELER glaringly apparent." at the very same time, simplicity and complexity. Each piece of the puzzle, The fact that disability is not even the tiniest part of it, has a role in the reflected in these statistics does not way and the only way that the surprise us. Even while being a relevant puzzle can be assembled and kept in proportion of each one of these catego- balance. From the perspective of Human ries, we are still out of the self-image of Kind, this requires humility and pride to society. Society does not count us in, as understand and accept that we are really, peers, even when trying to portray all its really small in the whole context of the diversity. universe, yet each one of us has a role that must be played to accomplish its Poverty & Disability balance. We should learn how to live in Poverty is a deprivation of the diversity, how to accept the individual : -- essential assets and opportunities to differences and how to make them which every human is entitled. Everyone benefit us all. should have access to basic education It seems that we, disabled people, - - and primary health services. Beyond have that vision. We can feel and under- income and basic services, individuals stand such concepts. This vision makes us and societies are also poor and then responsible and makes us into good role tend to remain soif they are not models, spokespersons for the transforma- empowered to participate in making the tions that society is just starting to go Earth's Population decisions that shape their lives. through. Are we ready for it? Dr. Phillip M Harter, MD, FACEP Approximately four-fifths of the In Brazil, we tell a story of a hum- from Stanford University, School of world's disabled people live in developing mingbird that, during a very big fire in Medicine recently stated that "If we could countries. Poverty creates conditions for the forest, was seen coming back and shrink the earth's population to a village of disability and disability reinforces forth, carrying water in his beak and precisely 100 people, with all the existing poverty. Exclusion and marginalization of dropping it over the fire. The other human ratios remaining the same, it would disabled people reduce their opportuni- animals, most of them bigger and look something like the following: ties to contribute productively to the stronger than the hummingbird, were all household and the community, and thus running away as fast as they could, There would be: increase poverty. thinking only to save their own skins. 57 Asians; 21 Europeans; 14 from Disability is expected to increase in While running, a lion watching the the Western Hemisphere, both north the future, if economic growth remains hummingbird asked him if he had not yet and south; 8 Africans unbalanced and does not accommodate realized that he would not extinguish the 52 would be female; 48 would be male equity, environment and social concerns. fire with such drops of water, but instead, 70 would be non-white; 30 would be Disability will also increase as society he would get himself killed. Without white becomes older. The proportion of stopping work, the tired hummingbird 70 would be non-Christian; 30 disabled children in developing countries then told the lion: "I'm just doing my would be Christian is also higher compared to developed part." 89 would be heterosexual; 11 would countries. Many types of disabilities that In our daily lives, when we make be homosexual are no longer or rarely being experienced decisions, most of the time we have to 6 people would possess 59% of the in healthy countries such as polio, choose between the lion's and the entire world's wealth and all 6 would landmine injuries, and leprosy are still hummingbird's vision of the world, of life be from the US. common in poor countries. and of ourselves. Do we normally think 80 would live in substandard or truly care about the ones around us? housing Continued on page 19 0 0 PAGE 18 TASH Newsletter, Feb./Mar. 2000 1999 TASH CONFERECE KEYNOTE ADDRESS inclusionaUniversal Cooperation the poor, the different - all these different Continued from page 18 Now we have a new parts of the same body, the same society. We should not fear that this means we Disability colors and sharpens all challenge: instead of proving will lose our identity or the advances that aspects and conditions of human kind. It we are 10% (of the world's we've already achieved. This will mean accentuates and aggravates situations of expansion of possibilities, establishment of discrimination, prejudice and exclusion population), we must new partnerships, mutual support and faced by women, by minorities, by poor convince society we are an solidarityuniversal cooperation. and all other underprivileged groups. It For 15-20 years we testified among also clearly highlights and illustrates the irreplaceable part of the 100%. strong social minority groups defining diverse physical, mental, and sensorial It may seem pure rhetoric, themselves as excluded. On another aspects of being human, obliging society "stream" we have seen ecology groups to react, interact and reflect about it. but it is a very crucial bringing to discussion the concept of switch in the disability diversity. But, following Human Nature Inclusion and Full Participation each one of these groups was not really The process of reaching empower- movement's approach. getting the whole picture, but only their ment and full participation as citizens is Now that we are beginning specific interests. It was once said that the long and ongoing. It obliges us to forge history of the world is the history of our history, personal and collective, on a to achieve recognition exclusion. This is an approach that is not daily basis. In fact, full participation can as a group within the acceptable anymore. only be truly achieved in an inclusive We, the whole society, have to start see- society, where each and all of us is many excluded groups that ing each other as one, with many faces and considered to be an integral part of the are navigating around ways of expression. We have to start prac- whole, of the community, which in turn ticing what we request others to do. We have is a responsibility of all its members. But society, it's time to mix to think inclusively and to live inclusively. to achieve this "ideal society," constant ourselves again with vigil is required. Time for Cooperation Our existence and our lives, our everybody else. We, as people with disabilities, tend constant fight for acceptance and recogni- to only represent and protect our own tion are a testimony of resistance against agendas. But we want everybody else to exclusion. We are still here, after millen- include us on their agendas, as a nia of discrimination, marginalization and Part of the Whole priority. We have the right. Society is in even in some cases elimination of disabled For the last 20 years or more, it has debt to us. But who is "society"? In our people from the face of the earth through been claimed we represent 10% of the own lives, don't we also exclude, racist and eugenic initiatives. But, the world's population, with specific rights discriminate, hate? human being resists and survives because that would give us equal opportunity to Adults with disabilities have rarely it is a form of life meant to do so. survive and join our communities. We advocated for the rights of children with Because we, people with disabilities, continue requesting that society accept us disabilities. This mission was led almost have historically and still face discrimina- and recognize our rights. We are still exclusively by parents, as their cause was tion and exclusion in our daily life, we are outsiders knocking on the door for different from ours. Still in many countries, no doubt the group of human beings that shelter. psychiatric survivors are not accepted as has discussed and analyzed in greatest depth Now we have a new challenge: part of the disability community. In 1999 the concept of diversity and inclusion. instead of proving we are 10% (of the we are still creating international forums to It is our role, our turn to offer our world's population), we must convince gather some disability organizations, with testimony, our knowledge, our wisdom to society we are an irreplaceable part of the the hidden purpose of excluding others society at this very same moment when, 100%. It may seem pure rhetoric, but it is from participation. We still see the different although not yet recognized by many, it's a very crucial switch in the disability areas of disability fighting against each time to move ahead. We already have the movement's approach. Now that we are other, professionals and families being feeling, the concept, the understanding, beginning to achieve recognition as a treated as enemies by organizations of the words to explain what an inclusive group within the many excluded groups people with disabilities and vice-versa. Of society means. Now it's time to incorpo- that are navigating around society, it's course there are historic reasons for all of rate these concepts into our own lives, time to mix ourselves again, with these attitudes but we cannot use this as an attitudes and actions. Only in this way everybody else, and get in. We want to be excuse anymore. can we truly help to open minds and identified within the regular 100%, In other spheres, we see women's hearts toward a society for all. We have mixed with the other children, the other movements excluding the disabled this huge responsibility and we don't elders, the ones who are too tall or too have the right to fail. fat, the blacks, the Indians, the foreign, Continued on page 20
PAGE 19 TASH Newsletter, Feb./Mar. 2000 1999 TASH CONFERENCE KEYNOTE ADDRESS
Inclusion 6 Universal Cooperation inclusive, to be planned for all.It means Continued from page 19 we will no longer plan our physical spaces Our generation and our services just for the mythical women's cause from their fights. We see of the disability community average man anymore, but for the real total lack of solidarity and collaboration population, including older people, within the social movement, as if we has had the privilege children, pregnant women, obese, people could solve the problems of one group of helping to generate temporarily impaired, wheelchair users, without solving the problems of society blind or visually impaired, deaf or hearing as a whole. new paradigms for impaired and so on. We see the United Nations excluding the future, within the We are talking about diversity: a new people who speak languages other than society, from and for men and women of English from participation in the discus- universe of diversity. all the ages and physical conditions, of all sions. Far too many of the U.N. and its Now we have the chance origins, races, cultures, religions, sexual agencies' documents are still only available and ideological options, social condi- in English, when not translated through an and the challenge to tions. The only kind of society that can isolated initiative by an organization in a contribute to their be sustainable and allow true and full member country. Even now, in the human development. globalization era, communication and actual implementation. This future requires the growth of hu- information are meant to be luxuries of man and personal development, tolerance, just a few. acceptance, solidarity and cooperation. With the era of globalization, that make one person feel superior to other Our generation of the disability information circulates instantly. The people. Winning is when you fulfill your community has had the privilege of notion of time and space is modified and personal potential to create a life of quality helping to generate new paradigms for today we participate in a faster world, and dignity for yourself and for all." And he the future, within the universe of more global, more technological, more concludes: "Life is not a toy store game that diversity. Now we have the chance and interactive... but not still inclusive. requires losers. Let us declare the 2151 Century the challenge to contribute to their actual International programs to assist as the Century of victory for all." implementation. We will only be able to economic and social development should Prejudice and discrimination are the do this if, serving as individuals and require minimum accessibility standards basis of exclusion. The concept of institutions, we apply these new para- in all infrastructure projects, including inclusion is holistic and it can only digms of this still utopian inclusive technology and communications, to successfully exist if absorbed and worked society as the basis for our daily decisions ensure that all people are fully included out by the whole society, together. and personal and professional actions. in the life of their communities. Notice the major shifts of approach, Values such as tolerance, solidarity We have the luxury of living in the for instance, within the area of disability and cooperation should lose their almost U.S., this wonderful country, probably over the last century: Among the "old religious stigma and become part of our the one that gives the most for its paradigms" was initially institutionaliza- daily lives concepts to be truly inhabitants. My country, Brazil, unfortu- tion, where all who were "different" were practiced, with mind and heart. nately suffers from one of the worst segregated, treated in isolation of the Here, now, day-by-day, we have the distributions of welfare in the world. But social context. Later came patterns of responsibility of helping to build toward if we put it in perspective, the U.S. has "normalization" and "integration" the magic moment of transformation one twentieth of the world population through which society intended "to when we will sit down to the same table, and accumulates one-third of all the adapt" those considered "different" to the councils representing human groups of welfare of the world. Universal coopera- existent status quo; a society that every kind; a "Council of Jedicelebrat- tion is urgently needed. excludes everything that does not quit fit ing the force, wisdom and fortune of within its frame. diversity. A Future for All Human beings have not been intrinsi- Today, the issue of inclusion perme- cally inclusive but, on the contrary, dis- Rosangela Berman Bider is President ates our political speech, not just in the criminatory by nature, fearing and reject- of the Inter-American Institute on area of disability. And this has to be ing everything that is different, everything Disability, headquartered in Rockville, coherent with our practice, both inter- that it does not know or understand. We Maryland. Ms. Berman Bieler may nally within the movement as well as in built a society planned and projected for a be contacted at 301-838-3031 relationships with the public in general. man's pattern close to "normality" that, ac- (phone); 301-838-3029 (fax); or As Justin Dart, a powerful leader and cording to international statistics, doesn't [email protected] (e-mail). humanist of the disability movement in correspond to the real condition of over the U.S. says: 80% of the population. "We must change a value system that Now we are talking about re- defines winning as gaining symbols of prestige construction; a new concept of society, 22 PAGE 20 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCH 2000
,
The TASH Elections Committee is seeking Nominations for the TASH Executive Board. Nominations and self-nominations are welcome. Send a letter describing the nominee, his/her past achievements and his/her commitment to TASH. Please provide the name, address and other contact information (phone, fax, and e-mail) for both the person being nominated and the person making the nomination. All nominations received by May 15, 2000 will be considered by the Elections Committee in their selection of a slate.
PLEASE SEND THE INFORMATION REQUESTED TO: Elections Committee, do Nancy Weiss, TASH, 29 W Susquehanna Avenue, Suite 210 Baltimore, MD 21204
Letters can also be faxed to Nancy Weiss at 410-828-6706 or sent by e-mail to [email protected]
1
Looking for Information on Anchorage School Self Determination? District (ASD) Participant-Driven Supports? This new curriculum is the resource you need. \ rice. Uh011'e Seeking applications By John Agosta, Kerri Melda & A NI111111:11 for 99-00 and 00-01 school years: Cathy Terrill Special Education Teachers, Deaf Education Includes easy-to-read and What You thorough descriptions of Need to Know About Participant- Teachers, Interpreters for the Deaf, Speech service systemshow they Driven Supports work and how they're funded. Language Pathologists, Occupational Thera- M111=111 Self-determination and Barran participant-driven supports are Services pists, Physical Therapists, Adaptive Physical Research explained, as are strategies to Institute Educators, Audiologists, Blind or Visually analyze state systems & create change. Impaired Specialists and Psychologists. This is a great resource for self-advocates, family members, board members, direct support staff and other too! Contact Carolyn Coe, List Price Curriculum & Overhead Masters - $179 Curriculum only - $120 ASD, Special Education Recruitment, Overhead Masters only - $60 Anchorage, Alaska 99519-6614, Use Your Credit Card to Order Today! call 907-742-4293, or send an e-mail to Call: 617-876-0426 [email protected] Fax: 617-492-7401 Visit our website at http://www.hsri.org/leaders/leaders.html
PAGE 21 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCH 2000
cjin/4einoriain James David Sexton19481999
The Council for Exceptional Children's (CEC's), Division commitment to the field of early childhood education. He was of Early Childhood (DEC) and the entire early child- adamant in his belief that research findings should be combined hood community lost a significant member in the with cumulative knowledge gained through experience to inform sudden death of J. David Sexton, president of DEC for 1999- practices in the field. 2000. David's exceptional leadership and vision for the Division David was committed to ensuring that CEC's Division of of Early Childhood will be greatly missed. However, he leaves a Early Childhood be a force that makes a difference in the overall wonderful legacy of contributions to the Division of Early quality of life for young children with special needs, their Childhood and of the Council for Exceptional Children, and his families, and the personnel who serve them. students, university, and community. We may take comfort in knowing that in this time of Over the course of his distinguished academic career, David tremendous loss, part of David's legacy will live on through this taught thousands of students enrolled in early childhood special important work. His enormous strength of character, keen education and early childhood education programs. His intellect, personal and professional integrity, and sense of human scholarly and profound interpersonal influences will live on in will be remembered often by those who were fortunate to learn those who were fortunate to learn from and with David. and grow from each and every interaction with David. David's prolific scholarship record attests to his lifelong Excerpts from the DEC web site. Reprinted with permission.
0 district to host its own training-of-trainers or to attend a one-day TOT on ©Maxim: Linking re Functional-Contextual tease Assessment to the Instructional Process. ... You'reinvite For more details on dates, locations and fees, visit our web site: www.lrconsulting.com invitatien LeCom5uLriniG PMB 747 POB 6049 Katy, Texas 77491-6049 virs-v-12-@nig... Ph. 281-395-4978 Fx 281-392-8379
PAGE 22 4 TASH Newsletter, Feb./Mar. 2000 FEBRUARY/MARCH 2000
Due to overwhelming demand, TASH has reprinted a limited quantity of the JASH Special Issue on Interventions for Young Children with Autism!
Individual and multiple copies are available for purchase for a limited time only!
The Fall 1999 JASH, co-edited by Fredda Brown and Linda Bambara, was devoted to Interventions for Young Children with Autism. The purpose of this special issue is to highlight a range of best practices in educational interventions. Several nationally- recognized researchers contributed their latest work in the area of early intervention of children diagnosed with autism.These contributors represent a range of practicesfrom behavioral to developmental. Authors include Lynn and Bob Koegel and their colleagues; Stanley Greenspan and Serena Wieder; Steve Anderson and Ray Romancyzk; and Gail McGee and her associates.
These articles are followed by commentary from five leading experts, including Shirley Cohen; Anne Donnellan; Glen Dunlap; Barry Prizant and Emily Rubin; and Richard Simpson. Perspectives from two parents, Claire Choutka and Diana Parisy, are also included.
The mission of this special issue is to bring together a variety of perspectives and models in order to facilitate and generate discussion and synergy in a time characterized by divisiveness and conflict.
To secure additional copies of this special issue of JASH, request an order form from TASH, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204; Phone: 1-800-482-8274; E-mail: [email protected]; or visit TASH's web site at http://www.tash.org/ publicationsgash/special_issue.htm Don't miss your opportunity to add this special issue of the Journal to your collection!
See How Far We've Come Words and Music by Jeff Moycr Oratory by Justin Dart
0 0
"For the Crime of Being Different," `just a Home of My Own," We Are Sur- a vivors," "Do You See Me As An Equal?" and the memorable title cut, "See How Far We've Come," written in honor of TASH's 25th Anniversary, are just a few of the selections on this incredible CD. 0-0
Don't miss this opportunity to purchase your copy of Jeff Moyer's powerful CD, "See How Far We've Come." Selections from this important retrospective on the last quarter century of the U.S. disability rights movement were featured in Jeff's keynote presentation at the 1999 TASH Annual Conference in Chicago. This moving collection of spoken word and music selections incorporates the stirring and unforgettable oratory of Justin Dart, an internationally prominent leader in the disability rights movement, with the songs and poetry of Jeff Moyer, a leading songwriter, musician, and disability rights activist. Available on compact disk for $15.00 (add $2.00 shipping for U.S. orders; additional postage will be added to orders outside of the U.S.) For volume discounts, contact Nancy Weiss, 410-828-8274, ext. 101. Make your check or money order (U.S. dollars) payable to: Jeff Moyer CD, c/o TASH, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, or you may pay using MasterCard, Visa or Discover.
PAGE 23 TASH Newsletter, Feb./Mar. 2000 0 0 0 0 1.1 a=, Larry Gorski, special Assistant to the Mayor and Director of the Chicago Mayor's Office for People with Disabilities, conducted a conference session on voting rights as part of the Governmental Affairs strand. John Donnelly (left) and Ming-Gon John Lian participate in the Community Living Strand.
Left: Even some of the youngest conference participants took a break to pose for a pix (Kiddie Corp. staff from left: Kim (holding Grace), Joyce and Doris; Front row from left: Marsha, Ashley, Kristina, Patrick and Peter)
Above: (L- r) Nancy Weiss, Executive Director of TASH, Patrick Schwarz, TASH Board Member, Grace Newton (wearing the bib) and Dean Linda Tafel, National-Louis University. National-Louis sponsored the opening night reception. Right: Keynote presenter Rich Villa (Left) was one of many authors that participated in the Friday evening book signing sponsored by Brookes Publishing. 1t s
Kjes, ,
Craig Michaels (right) looks on as Larry Gorsh accepts the peace pole presented to the Mayor and City of Chicago. Judith Snow (3rd from the left) celebrated her 50th birthday with a room full of friends and well wishers as part of the Chicago conference. Pictured with Judith are (1-r) Joe Wykowski, P Sue Kullen (foreground), Jay Klein and Anne Donnellen.
PAGE 24 (....r) 6 TASH Newsletter, Feb./Mar. 2000 1999 TASH ANNUAL CONFERENCE HIGHLIGHTS
)
Rich Villa Diane Coleman Kyle Glozier Jeff Moyer Anne Donnellan Roseangela Berman-Bieler
TS
and 1999 Collaboration Award
1999 Alice H. 1999 Thomas G. Haring Hayden Award Award for Research
Denise Mautz, winner of the Elaine Wilson (left) and Lois Curtis and their Alice H. Hayden advocates received the 1999 TASH Collaboration Award for Award for achieving their goals and influencing achievements in public policy nationally through the victorious U.S. 0 leadership, Supreme Court case, Olmstead v. L.C. and E. W. teaching, scholarship and service on behalf of people with disabilities. 1999 Emma Rose Scholarship Above: Pam Walker, recipient of the Award 1999 Thomas G. Haring Award for 1999 Positive Approaches Award Research.
Left: Colleen Thoma (left) and Sara Winter accept the Positive Approaches Award for their important contributions toward public policy in support of positive behavioral approaches in the passage of legislation AB 280, which prohibits the use of aversive procedures in Nevada. Winners not pictured: Barbara Buckley, Eric Beiningen, Ed Guthrie and Susannah Dickman, received the Stephanie Richter. first Emma Rose Scholarship for "advocating for her sons and for championing the cause of inclusion for all."
PAGE 25 nP7 TASH Newsletter, Feb./Mar. 2000 1999 TASH ANNUAL CONFERENCE
74444 Vaa 6 y010 tobe To the following Official Sponsors for their viak support of the 1999 TASH Annual Conference! vvotakses ttstov City of Chicago Mayor's Office for People Holdhe dates: with Disabilities www.ci.chi.il.us/Disabilities/ December 01Fontainebleaun;:15 itt:lHilton vllesort Premier Level Sponsor $7,500 or more 'ST Towers Beach, William M. Mercer, Inc. Miami wwwwmmercer.corn Look Gold Level Sponsor for more $5,000 or more information in future National-Louis University issues of www.nl.edu the TASH Newsletter 1886 111 and on our Gold Level Sponsor web site! $5,000 or more
THANK YOU TO THE 1999 CONFERENCE VOLUNTEERS We Couldn't Have Done It Without You! Roslyn Allender Shosh Seligman Lori Avilla Ellen Shiflet Janet Butler Rick Jones Cara Nagel Lita Spak Maria Campbell Felicia Karvonen Vicki Nesmith Michelle Steiner Jamie Carlson Lisa Kelly Doris Proctor Sheree Swanson Joya Carter Crosby King Margaret Prokurat Beverly Tallman Vendella Collins Bridget Krieger Evelyn Quarles Debbie Terry Claudia Combs Wise Becky Kundert Michael Raymond Cherie Tessier Joanna Conroy Dacia Larsen Robin Reale Robert Wardell Jami Davis Heather McConnel Goukler Laura Richard Jessie Weber Cheryl Deignan Mia McMullin Wayland Roberts Christine Westphal Christi Filakosky James Mann Diana Robishaw Jennifer Wolfe Dana Gissal Joe Meadours Lois Rodgers Adelia Griggs Kenny Miller Melissa Rogers Gayle Hafner Amy Monnier Joanna Royce-Davis Kristin Howard Jennifer Moran Jenny Sala
PAGE 26 0 8 TASH Newsletter,Feb./Mar. 2000 1999 TASI-0 ANNUAL CONFERENCE
Many thanks to all of the 1999 Disabled Sexual Empowerment and Exchange of MOPD & CTA Hospitality/Resources exhibitors that helped to make the Knowledge Moving Solutions, Inc. Chicago conference such a success! We Diverse City Press National-Louis University greatly appreciate the loyalty of those DynaVox Systems, Inc. Networks for Training & Development, Inc. exhibitors that have been with us over EZ Pocket Not Dead Yet the years, and hope that our newest Fannie Mae ORI, Inc. exhibitors enjoyed the experience. Front Porch Creations Peak Parent Center We look forward to seeing all of you GLMHRA Inc. People First of Washington in Miami Beach in December 2000 to Global Ideas, Inc. Peytral Publications help celebrate TASH's 25th anniversary! Great Lakes ADA Center Playaway Toy Company, Inc. Howard Community Services Program Development Associates AdaptaPlay I-CAN Project RSVP Attainment Company Inclusion Press International Roots and Wings Aurora Ministries InSite Coaching Systems SNAP Special Needs Advocate for Parents Autism National Committee Bookstore and Herb Institute for Applied Behavior Analysis Special Needs Project Lovett Foundation International Rett Syndrome Association Super Duper Publications Brookes Publishing Company Issues in Developmental Disabilities The Council on Quality and Leadership Brookline Books Jeff Moyer Music The Facilitated Communication Institute Center on Human Policy, Human Policy Press Jessica C. Vohs The Nth Degree Chicago Mayor's Office for People with Disabilities KidKit, Inc. Trips, Inc. Department of Disability and Human Development, Life Planning Services University of New Hampshire, Institute on Disability University of Illinois at Chicago LMD, The Special Kid Company William M. Mercer, Inc.
Adaytaplay rargo, ND 71.1) 241 987)
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PAGE 27 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
'ND Eram ti)1921E3 unwilling or unpre- pared to confront the Continued from page 12 cognitive dissonance, Demonstrations be big on standards, have high expecta- emotional turmoil, tions for our students, but we must be and resistance that Between 1996 -2001, China will create 1.8 million inclusive short on standardization. One of the accompany complex options and train over 1 million teachers in special education defining characteristics of a bureaucracy is change initiatives. Inclusive education efforts in Burundi, Guyana, Jamaica, a lack of personalization. But the Student Kenya, Mexico, Philippines, South Africa, Bermuda, India, Bill of Rights we spoke of earlier calls for Visions of and Viet Nam personalized accommodations, as does the Change 92 Nations signed the Salamanca Statement process for developing individualized Della Ambrose de- As of 1993, inclusion models exist in every U.S. State & educational programs (IEPs) to facilitate veloped, and Tim Canadian Province the learning of students identified as Knoster modified, a Less than 1% of students with disabilities in special schools eligible for special education. model to help us un- in Australia, Denmark, Greece, Norway, & Spain To create the future we want for our derstand and imple- Norway (1975), Iceland (1991), Honduras (1991), Italy children necessitates that we guard ment complex change. (1992), and Austria have mandated inclusion in some or all against political sloganeering and simple If we want a complex schools. solutions to complex problems. To change such as the assume that the solution to the problems creation of schools that facing education in this country will be are both caring and effective to occur, we how many people in other nations remedied by simply creating higher need to combine vision with skills, incen- reference international law, policy, and standards is like saying the solution to tives, resources and an action plan. Put all covenants. I never hear that kind of world hunger will be remedied by of these elements together and you will discussion in the United States. increasing nutritional standards alone. achieve change. If one or more of these com- We should be referencing and Slogans such as, "all students will come ponents are missing, the result will be con- celebrating documents such as the to school prepared to learn" are naive and fusion, anxiety, resistance, frustration, or the Salamanca Statement, which emerged miss the point. Students already do come expenditure of a lot of energy without from the 1994 United Nation's-sponsored to school prepared to learn. Unfortu- change. World Conference on Special Education. nately, educators oftentimes are ill- Phil Schlechty reminds us that,One Ninety-two nations signed the Salamanca prepared to teach, motivate, and relate to of the greatest barriers to school reform has Statement, which in part reads, "Educa- their students. been the lack of a clear and compelling vision." tion for children with special educational The fifth and final reason why We at TASH have a vision. It is clear.It is needs should be provided within the regular schools have been so intractable is that compelling. It is for all children. And the education system, which has the best many of us who would like to lead others Circle of Courage represents it.If we want potential to combat discriminatory attitudes, into change are naive and/or cowardly. to actualize our vision, we must redouble create welcoming communities, and build an We are naive because we do not under- our efforts to assure that whether a child is inclusive society." TASH'S vision is shared. stand the change process. We are naive included is no longer dependent upon ge- There is strength in numbers. We must because we want immediate change ography where that child and that child's build regional, national, and international despite the fact that true system change family happen to live. alliances for change. requires a minimum of 5 to 7 years. We To realize our vision for our children Klopf observed that, "... whatever is, are cowardly because many of us are requires that we stop being so egocentric, is possible." Let us pause and celebrate focusing only on what has been made possible thus far. what happens in We have journeyed a long distance from the United States. the day Doug Biklen challenged us by MANAGING COMPLEX CHANGE We need a saying, "We have islands of hope. We need ACTION broader, interna- to create mainlands of opportunity" VISION SKILLS INCENTIVESII RESOURCES PLAN = CHANGE tional view. We And more work remains to be done. ACTION SKILLS INCENTIVESII RESOURCES PLAN = CONFUSION have much to We need to gather strength and energy from learn from other that which has already been accomplished. ACTION VISION INCENTIVES RESOURCES II PLAN = ANXIETY people, cultures, As Carlos Castenada reminds us, "The trick
ACTION and nations. As I is in what one emphasizes. We either make VISION SKILLS RESOURCES PLAN = RESISTANCE travel to and from ourselves miserable or we make ourselves SKILLS ACTION = FRUSTRATION VISION INCENTIVES PLAN different countries strong. The amount of work is the same." working on social I want to continue the celebration of VISION SKILLS INCENTIVES I RESOURCES = TREADMILL justice and the results of past efforts before we return
Adapted from Knoster, T. (1991) Presentation at TASH Conference, Washington D.C. education issues, to a discussion of the present and the (Adapted by Knoster from Enterprise Group, Ltd.) it never ceases to future. We all stand on the shoulders of amaze me just, Continued on page 29 0 PAGE 28 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
TIND C3['l nDIDEESS (Letter from Jody to her teacher) Continued from page 28 Bilding me a fewcr Dear Teachr, Today Mommy cried. Mommy asked me Jody do oyu realy kn Why You are going to school I said I don't kno why? She said it is taus we are going to be bildiing me a fewchr. I said What is a fewchr wats one look like? Mommy say everry one need to work realy hard for us kids to make our fewchrs the nicest ones the world can ofer. Teacher can we start tody to bild me a fewchr? Can you try espeshly hard to make it a nice prity one jest for Mommy and for me? I Love You teacehr. Love, Jody
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Scenerom Christmas in Purga ory. those who have come before us. Look at the institutional picture from Burt Blatt's Christmas in Purgatory to the left. This picture represents the vision of what people at one time thought was possible and best. That vision changed as a result of the vision, skills, incentives, resource allocation, and actions of the people who preceded us as well as many of the people sitting here today.I would be remiss if I did not point out that, every time our vision of what was possible expanded, it was the parents and self-advocates who had that broader, greater vision long before the professionals. To go from scenes such as those depicted in Christmas in Purgatory to inclusive scenes like these from across the world in 25 to 30 years is indeed cause for celebration. Let us return to a discussion of the future of educa- tion and the struggle we will experience in the present to Students working together in a cooperative learning group. reach that desired future.I believe that the words of a student, Jody, written to her teacher may help to motivate us to create better futures for all students. Teacher, parent, policy maker, community member, advocate, fellow student, can we start today to make a better future for our children? Dr. King's words also give us inspiration for the struggle ahead: "Cowardice asks the question, 'Is it safe?' Expedience asks the question, 'Is it political?' Vanity asks the question, 'Is it popular?' But conscience asks the question, 'Is it right?" And there comes a time when one must take the position that it's neither safe, nor politic, nor popular, but it must be made because conscience says that it is right! The possible future of education is either a terrible or a wonderful thing. The future is dependent upon the actions that we take in the present. These actions are seeds, which bear many vines. The vines may lead to A classroom scene Continued on page 30 PAGE 29 3 1 TASH Newsletter, Feb./Mar. 2000 1999 CONFERENCE KEYNOTE ADDRESS
1999 KEYNOTE ADDRESS Continued from page 29 Available from Options in Community Living inclusion or exclusion. They can lead to website: www.optionsmadison.com belonging or alienation. They can lead to mastery or a continued focus upon deficits Celebrating the Ordinary: The Emergence of Options in Community and a future filled with categories of Living as a Thoughtful Organization disability and a remediation response to By John O'Brien, Connie Lyle O'Brien, Gail Jacob, 1998, $25 diversity. The vines can lead to indepen- dence or dependence. They can lead to a A way to think about support living that collects stories, pictures, documents and policies from Options and reflects on their practical meaning: world where everyone's gifts are recog- nized and celebrated and where all are *emergent order *autonomy and support lead to liberation *conflict clarifies beliefs generous or it can lead to false charity, *high ideals grounded in daily demands *stretching the ordinary *acknowledging benevolence, materialism, and selfishness. difficulty *cultivating expertise *relationships as resources *make funding flexible Today as I stand here, I am optimistic *temptation to standardize *learning as a matter of the heart *chewing on about where those vines will lead and the intractable problemsenine enduring understandings* future of education. We will continue to make progress. As Cesar Chavez noted, Remembering The Soul of Our Work "Once social change begins it cannot be Edited by John O'Brien and Connie Lyle O'Brien, editors, 1992, $20 reversed. You cannot uneducate the person who has learned to read, humiliate the person Stories written by Options' staff on the experience and meaning of: who feels pride, and you cannot oppress the *sticking with people *ordinary moments *everyday triumphs *how people change *dreams *family *friends *fighting the system *suffering people who are not afraid anymore." and death *words of power *writing stories at work* Eleanor Roosevelt told us, "The future belongs to those who have a dream." Marsha YOUR ORDER: copies of Celebrating the Ordinary Forest reminds us that "We create our to- copies of Remembering the Soul of Our Work morrows by what we dream today."It is an honor to stand before a room filled with Mail to Options at 22 N. 2nd St., Madison, WI 53704, people who have a dream and who will with name, address, phone, fax, and e-mail address. continue to sow their seeds well to make PLEASE SEND PAYMENT IN U.S. DOLLARS WITH YOUR ORDER. the future the best one the world can offer. Thank you very much. Contact Options for discounts on larger orders. Phone: 608-249-1585Fax 608-249-3372E-mail: [email protected]
Rich Villa has been a general and special education teacher, as well as an administrator in one of the nation's first totally inclusive DIAGNOSTIC EDUCATION SPECIALIST school districts. As the President of Bayridge Consortium, he pro- California's Department of Education, Diagnostic Center, Southern vides training and consultation in areas such as collaborative team- California, seeks a special educator to serve as a member of a top-rated ing, creative solution-finding, transdisciplinary Assessment Team, working in a clinic setting, providing systems change, and inclusion. educational assessment and instructional planning assistance for students Rich provides technical assistance 3-22 years with moderate to significant disabilities to school district to school districts, departments educators and families. of education and advocacy groups across the country and The selected candidate will have excellent oral and written communica- around the globe. tion skills, a master's degree, teaching experience and eligibility for CA severely handicapped credential. Rich may be contacted at Bayridge Consortium in San If you would like to work in a collegial working environment with top- Marcos, California by phone notch professionals, call or mail a letter of interest and resume to: (760-761-4917) or e-mail
eanorliefsHemel
BY ELEANOR BAILEY
I am 11 years old and in fourth grade. This year some little girls came to my school.I heard some people say "they have Down Syn- drome." On a Saturday I asked my mom, "do I have Down Syndrome?" Mom said that I do. I went to my bedroom and closed the door. I didn't cry, but I shut the door and was mad and upset.I didn't want to have Down Syn- drome. On Monday, I went to school.I told my teacher, Mrs. Karr, that I had an announcement to make. She gave me the microphone and 1 said: "I have two things to say First, I have Down Syndrome and second, I am really scared that none of you will like me anymore." My friends were really nice. They said they already knew that and they still liked me. Some of them cried.I got lots of hugs. But I am still not happy! On Wednesday, my Dad and I got on an airplane and went to Chicago. On the airplane I listed to my Walkman. I have a song that goes, "Clang, clang, rattle, bing, bang, I make my noise all day" 1 thought that is what I can do. Even with Down Syn- drome I can still make my noise. We went to the TASH Annual Meeting. There were lots of really cool people there. We stayed in a big hotel. In our room there were two bathrooms. One had a shower and one hada bathtub.1 made a sign that said "Girls" and put it on the door of the one with the bathtub.I didn't want my Dad to come in. I took lots of baths.I thought if I took enough baths I could wash my Down Syndrome away.I also thought I would put hair spray on it, but my Mom and Dad won't let me have hair spray.I tried to put sunscreen on it because I thought that maybe then I wouldn't have to have it all of the time. But my Dad said that none of that would work. I have friends that were at TASH. My really special friend is Tia Nelis [newly elected to the TASH Board]. She lives in Illinois. Tia has a disability but when she talks, people listen. They really listen. Tia is a leader and she really likes me. I told Tia that I have Down Syncrome. I was surprised when she said that she has always known that. She said she didn't care. She said that I am an important person and that Down Syndrome is not as important as being a wonder- ful person. When I grow up, I want to be just like Tia! I have other friends at TASH who told me the same thing.1 met a really nice person named Katie. Katie goes to college. She has Down Syndrome. I also talked to my other friend, Liz Obermayer. Liz has a new job and is moving to Maryland, which is a state. Liz has a disability, but she is a leader, too. She is also on the Board of TASH. Liz goes to lots of meetings and people listen to her, too. I got my name from Eleanor Roosevelt. Lots of bad things happened in her life.I have read all about her. She was a leader. 1 also know about Rosa Parks, Martin Luther King, Nelson Mandela and Robert Kennedy. Lots of bad things happened to them, but they were strong and were leaders. My Dad says they made people proud of who they are and made them free. I wish I didn't have Down Syndrome. But I do, and I am a person with lots of plans. When I wonder what to do, I remember my song.I will do what it says.I will go "clang, clang, rattle, bing, bang and make my noise all day" Even though I am sad, I know I can be as toughas anyone. That is what I want to do. Just be me. This article was compiled from Eleanor's journal entries during the 1999 TASH Annual Confer- ence. Reprinted with permission of Mouth.
PAGE 31 33 TASH Newsletter,Feb./Mar. 2000 ASHMQW:3114VIT,3
Priscilla Newton, Editor Policy Statement Kathy Boundy It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Doug Bihlen, Vice President Bob Kafha members or the Association as a whole. TASH reserves the right to exercise edi- Donna Gilles, Chair of the Executive Committee Jay Klein torial judgement in selection of materials. Liz Obermayer, Secretary Debra Kunz All contributors and advertisers are asked to abide by the TASH policy on the Ming-Gon John Lian use of people-first language that emphasizes the humanity of people with dis- Joe Wykowshi, Treasurer Tia Neils abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director individuals" refer to characteristics of individuals, not to individuals themselves. Jacki Anderson Jorge Pineda Terms such as "people with mental retardation," "children with autism," and "in- Michael Auberger Barbara Ransom dividuals who have disabilities" should be used. The appearance of an advertise- Linda Bambara Patrick Schwarz ment for a product or service does not imply TASH endorsement. Wanda Blanchett Jacqueline Thousand r 1
Name: Address: City/State/Zip: Telephone: Fax: ( ) E-mail: Is the above your work address homeaddress other
Please Check Appropriate Categories () Gov. Personnel (Federal, State, Local) () Related Services Provider (not more than three): () Interested Individual/Advocate/Friend () Self-Advocate () Administrator/Adult Services () Legal Services Provider () Social Worker () Administrator/Education () Occupational/Physical Therapist () Speech/Language Pathologist () Administrator/Other () Parent/Family Member () Special Education Teacher/Support () Adult Service Provider/Staff () Personal Assistant Specialist () Behavior Specialist () Professional Public Policy Advocate () Staff Development/Trainer () Case Manager () Professor/Instructor (College/University) () Student (College/University) () Early Childhood Services () Psychologist () Supported Employment/Day Personnel () Educatorlfeacher () Regular Education Teacher/Administrator () Other
Moving? Please notify TASH of your new address. () Mastercard () Visa () Discover Card Number Expiration Date General Membership (individual) $88. Organization/Subscription (all organizations, schools, libraries, Signature universities, etc. must use this category) $200. Associate Membership (for people having an annual household () I would like to spread my payments out. Enclose 1/3 and you will income of $25,000 or less, and for whom payment of the full fee receive 2 additional invoices at monthly intervals. would present a financial hardship) $45. Lifetime Member $1,000. Add $10 for postage costs for members in Canada and $25 for CHAPTER MEMBERSHIP: members outside the U.S. and Canada. ( ) Include an additional $15 if you are applying for an individual membership Group Discount Rate (When three or more individuals from the same or $30 if you are applying for an organizational membership and also want to organization join as International/Chapter or International Only become a member of your local chapter. members at the same time Save $20 per membership!) Please make check payable to:TASH Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. Address: 29 W. Susquehanna Avenue, Suite 210 bank. Add a $20 processing fee if check is not drawn on a U.S. bank. If you Baltimore, MD 21204 would like to charge your membership, please fill in the necessary information Telephone:410/828-8274 Fax: 410/828-6706 in the next column. L _J
STASH NON-PROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE Suite 210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274, PERMIT# 187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: wwwtash.org Address Service Requested 3 I
FEBRUARY/MARCH 2000 PRINTED IN THE U.S.A. I
1 !Li
'Is
INSIDE: Collaboration at Whittier High School; Standards Based Education Reform; and Effectively Educating Students with Challenging Behaviors 1,-P121:11 2©0®
TABLE CONTENTS
From the Executive Director Page 3 Standards Based Education Reform Page 4 2000 TASH Conference Page 6 Collaboration at Whittier H.S Page 8 Whole Schooling: Linking Inclusive Education to School Reform Page 10 The Inclusion of a Youth with Significant Disabilities in a Community 10 a.m. - 1:00 p.m. Wednesday, April 26, 2000 Environment Page 16 Harrisburg Hilton and Capital Rotunda School-linked Services:Reinventing 10:00 a.m. - Meet at the Hilton Hotel and march to the Capital Community in the Age of 12:00 Noon - 1:00 p.m. - Rally at the Capital Rotunda Globalization Page 19 Center on Human Policy: Agency Conver- Please come to our Freedom March to celebrate the 600 people who have moved from sion at Katandin Friends, Inc Page 22 institutions into community programs over the last two years. Come march with us for Tri-State Consortium: Effectively Educating the 2,144 of our brothers and sisters who are still remaining in institutions across the Students with Problem Behavior Page 25 State. Perspectives on Kelso Page 32 On April 26, Freedom Marches will be held all across the country in every state (spon- sored by Self Advocates Becoming Empowered, the national self-advocacy group and co- sponsored by Pennsylvania Coalition of Citizens with Disabilities, Pennsylvania Develop- TASH(formerly The Association for Per- mental Disabilities Council; ARC, Montgomery; Visions for Equality). Be part of this sons with Severe Handicaps) is an in- historic national event. ternational advocacy association of people with disabilities, their family We need your help and your support. We will have a Freedom Wall showing people's stories who have moved to the community. If you want to be on the Freedom Wall, call members, other advocates and people us at the Freedom Hotline, 1-800-867-3330. who work in the disability field.TASH actively promotes the full inclusion and Visit the Stand for Freedom Rally Web Page at www.speaking.org participation of persons with disabilities Questions? Call our office at 610-825-4592. in all aspects of life.To receive an in- formation packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Balti- more, MD 21204 or phone (410) 828- 8274, ext. 8 or e-mail: info @tash.org. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and R2000000J 051,1412213L74 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, fAsTI1SH 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 1999 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Buildingcommunitiesinwhichno one is segregated For questions about membership, conference registration or exhibiting, call: and everyone belongs; Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, Eradicating injustices andinequities; newsletter submissions and advertising, or publication sales, call: Priscilla Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. Supporting research and disseminating 102, e-mail:[email protected] knowledge and information; For information on the Journal (DASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: LMBl @lehigh.edu Promotinginclusiveeducation; 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, in large print, and in Braille for people whose disabilities make these alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format. Requests for permission to Promoting excellence inservices. reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 TASH Newsletter, April 2000 PCIarin 4G11C EZEIZUVINE DOL311640L3
with cerebral palsy sat, until she inhaled her Kelsos as "heroic" for taking him "to a last breath. Somehow I missed a similar flood hospital where people are trained to care for of support for the philosophies of Peter Singer, him instead of loading him into one of those or Jack Kevorkian. BMWs and heading for a cliff.'
RegardlessTASH is an organization that is I have a friend who regularly reminds supposed to value and validate the perspec- me (usually when I'm talking about not tive and experience of people with disabilities. understanding another person's actions) This is a TASH discussion list. One would that putting his head on another person's hope that value would carry into some shoulders has never seemed to work for attempt to at least strive to understand the him. The Kelso's actions the day after perspective of Steven Kelso himself." Christmas last year raise important Vvom Nam lamearnue DOveagov questions for the disability community.
BY NANCY WEISS The Ragged Edge published a series of Are there times when a parent's right to a articles that were strongly critical of the "normal" life supercedes a child's right Kelso's actions and called on the disabil- to a parent's care? Is what constitutes ity community to consider how Steven "enough" support a personal decision For a field that defines itself by its must have felt in being abandoned. One that varies from family to family and can commitment to inclusion and article began with this clear message: only be judged individually? Is it diversity, our willingness to "Dear fellow citizens who so naively believe understandable to view the task of polarize is notable. The response to the that parents of disabled kids struggle with raising a child with disabilities as more story of the Kelsos - the Pennsylvania challenges the rest of us cannot possibly of a burden than a joy? And perhaps couple who left their 10 year old son, understand that you tell us not to judge most to the pointdo people in the Steven, at a hospital the day after Richard and Dawn Kelso for reaching the end disability community have a right to Christmas - is a case in point. of their rope and abandoning their severely judge others against a set of standards disabled 10-year-old Steven at a hospital in that works for them? A few months ago TASH started an another state: Go to hell."' internet discussion group called TASH Because the actions of the Kelsos Update. The group is a forum for TASH Even this month's Redbook magazine generated so much discussion that made members to discuss the issues facing included among its make-up and weight us think, we have devoted a section of people with disabilities, family members loss tips an article by a parent of two this Newsletter to various articles on the and others who provide supports. The boys with disabilities that was strongly topic (see pages 25 - 28). We'd like to listserve is used to keep participants up- sympathetic to the Kelsos. The article hear from you on this topic, either to-date on upcoming events, conference says that the headlines about the Kelsos through the TASH Update, by e-mail to information, legislative action and for "could hardly have come as a shock to any [email protected], or by fax to 410 -828- discussion of current events. (All TASH honest parent of a disabled child. Try 6706. members are invited to join this discus- `Parents at the Brink of Collapse Don't sion group. To join, go to: http:// Abandon Boy' for a real stunner" The wwvv.egroups.com/group/TASHUpdate author goes on to characterize the Footnotes: or if you would like to receive only action alerts and legislative updates from Josie Byzek. Shame. Ragged Edge, TASH, go to: TASHAction- March/April 2000. [email protected]). The Kelso's actions the day after Christmas last year raise important questions for 2 Anne Mitchell. When Love Isn't Enough. The actions of the Kelsos have been a Redbook, April, 2000. P92 hot topic on this list serve and else- the disability community. where. One TASH Update participant, "Are there times when a in response to a posting that called for parent's right to a "normal" more understanding of the stress parents life supercedes a child's right are under, wrote: to a parent's care?"... "And perhaps more to the point, Don't forget to send in your regis- "Somehow I must have missed the outpouring do people in the disability tration for The First International of similar sympathies and calls to avoid community have a right to Conference on Self-Determination rushing to judgement when a father in judge others against a set of & Individualized Funding, Seattle, Canada ran a hose from the exhaust of his standards that works for Washington, July 29-31, 2000. See truck to the cabwhere his young daughter them?" pages 29-30 of this Newsletter for the Conference Registration Form. PAGE 3 3 7 TASH Newsletter, April 2000 OVMDMIDO MORD ED1311@,,MICM LIEPCX2ka
Students' individualized these components must be applied to or education programs (IEPs) include students with disabilities.8 Any are expected to be used, as failure to provide students with disabili- Includ ng they were intended, as ties the benefits of standards based Students with critical tools to achieve education violates Section 504 of the educational goals: the IEP Rehabilitation Act of 19739 and the Disabilities in must be shaped by evalua- Americans with Disabilities Act,1° as well Standards tions of disability-related as section 1412(a)(16) of the IDEA Based Education educational needs and Amendments of 1997. Reform consistent with state stan- dards, goals, objectives,5 and Because states and school districts are BY KATHY BOUNDY state-of-the-art practices.6 required to establish a single set of standards that embrace all students," Standards based education they must develop a broad umbrella of reform is designed to im- standards that encompass supplemental prove the quality of students' educational needs, including, e.g., educational outcomes by functional or independent living skills, As states and school districts move identifying desired knowledge and of even those students with the most toward full implementation of competencies and aligning curricula and severe cognitive disabilities." These standards based education instruction to achieve this improvement. students, who comprise a very small reform, a real opportunity exists for Critical to effective school reform is percentage of students with disabilities, students with disabilities, their parents, measuring whether schools and local may be unable to attain the levels of advocates, and educators from pre- educational agencies (LEAs) are making proficiency expected for all other school classrooms through school-to- progress toward enabling all students to students even with specialized instruc- work programs to ensure a high quality meet challenging state standards, and tion, related services, supplementary aids education for all students. In explicit holding schools and LEAs accountable, and services, individual accommodations legislative findings codified in the IDEA in part, through public reporting require-or program modifications. Nevertheless, Amendments of 19971, Congress criti- ments. Given the poor history of for a system to be inclusive of all cized the nation's education system for ensuring that students with disabilities students, it must adopt standards for all its more than 20 year history of low participate in the general curriculum andstudents, such as "habits of the mind" expectations of students with disabilities, receive the content provided all other (e.g., persistence, attentiveness)" or its failure to disseminate what is known children,' it is essential they be included independent living skills which subsume and has been learned, and its failure to in any standards based education reform the widest range of abilities. Standards implement research based practices for initiatives. Their inclusion in standards that address a wide range of ability, as all effectively educating students with based education reform is mandated other standards, presumably can and disabilities. under Goals 2000: Educate America Act, should be broken down into components Title I of the Elementary and Secondary so that it is possible to determine While the IDEA Amendments of 1997, inEducation Act, the School-to-Work whether students, including, in this case, fact, give students with disabilities few Opportunities Act and the IDEA Amend- those with significant cognitive disabili- new rights, Congress clarifiedand in ments of 1997. ties, can demonstrate whether they are doing so, emphasized the rights of making meaningful progress. Also, these students to receive high quality Moreover, once a state has adopted this including these students in field tests public education consistent with state strategy for improving the quality of incorporating a broad range of standards education standards.2In addition, the education, as evidenced, for example, by reflecting a wide spectrum of learning is IDEA Amendments stress the right of identifying and agreeing upon desired one way that states and school districts students with disabilities to participate knowledge and competencies that can identify and consider the educational fully in the general curriculum with theirstudents are expected to know and be needs of these students in the develop- non-disabled peers,3 and to be provided able to do, aligning curricula and ment of standards that embrace all real opportunities to learn through instruction with these content and students and reflect desired outcomes.14 specialized instruction, supportive performance standards, measuring services, supplemental aids and benefits, whether LEAs are making progress in Students with disabilities must be including services and training for enabling all students to meet the chal- provided the curriculum and instruction teachers4 to enable their students to lenging standards and holding states and necessary to allow them to make meet, in whole or in part, the standards school districts accountable, in part, progress toward meeting the standards expected to be met by all other students. through reporting requirements, then all Continued on page 5 PAGE 4 35 TASH Newsletter, April 2000 STANDARDS BASED EDUCATION REFORM
Including Students with tions are interpreted to preclude modify- the curriculum, including any modified Disabilities in Standards Based ing the content of an assessment, curriculum, is aligned with the full range students who could demonstrate Education Reform of applicable standards, and that the progiess toward meeting the standards curriculum is being implemented Continued from page 4 established for all, if assessed differently, through effective instruction." Individu- must be provided that opportunity. ally, assessment results may also be used set for all students.'5 Many children with These students might be assessed using a to provide feedback to teachers and significant disabilities, including cogni- performance assessment that measures parents about an individual child's tive disabilities, are able to participate in progress toward proficiencies in the sameeducational strengths and needs, helping at least portions of the general curricu- standards but in a different way. For to shape instruction through review and lum, when specialized instruction and example, a student who possesses the revision of the student's IEPs.22Signifi- related services and supplementary aids ability but cannot demonstrate his or hercantly, when such assessments are used and services are provided, as needed.'6 actual level of proficiency or mastery of in this way to improve instruction and To the extent that their curricula and particular standards by using the written learning and as a means of holding instruction have been modified by their standardized test instrument (even with systems accountable, e.g., under Title 1, respective IEP teams, they will need to accommodations or modifications), but Parts B and D of IDEA, and state educa- be aligned with those standards (and who could do so by building a model or tion reform statutes, they cannot be used components thereof) that encompass using a computer program, must argu- to impose 'high stakes' consequences their supplemental educational needs, as ably be provided such an alternative (e.g., promotion or graduation) on well as with the content and perfor- (alternate) assessment that measures the students. To the contrary, poor perfor- mance standards (or components same content standards being measured mance is evidence that students have not thereof) for all students, also modified by the standardized assessment. On the received effective instruction and have and adapted as necessary and appropri- other hand, an alternate assessment not been provided adequate opportunity ate by their respective IEP teams." measuring different content may need to to learn. Nowhere is the evidence likely be developed for the limited population to be more clear than in the case of ett, et, ftA ct,ets ctA eb. of students with such significant cogni- students with disabilities, especially Arguably, if states considered and addressed tive disabilities that they are unable° to the educational needs of all students -- students with cognitive disabilities, who including those with demonstrate any measurable progress have received inadequate and ineffective significant cognitive disabilities -- When toward meeting even the broadest most programming and instruction, and been establishing standards for all children, there basic standards, or parts thereof, using a inappropriately denied access to the should be very few instances when it would be standardized assessment or an alternativebody of knowledge contained in the necessary to use an alternate assessment that (performance) assessment designed to general curriculum taught non-disabled measures different content. measure the same content differently. children. 23 ® ® ® ® ® ®® Arguably, if states considered and Because all students with disabilities addressed the educational needs of all Ultimately, students, parents, and have a right to participate in State and students, including those with significantadvocates must be vigilant if states and school district assessments as well as cognitive disabilities, when establishing school districts are going to be held accountability systems,'8 these assess- standards for all children, there should accountable for improving educational ments must include all students, regard- be very few instances when it would be outcomes for all students with disabili- less of the nature or severity of their necessary to use an alternate assessment ties. Students with disabilities will disability. The use of accommodations that measures different content. Rather, benefit from standards based education and modifications, as necessary and as these students would be administered reform only when all students participate determined by their IEP teams, ensures the assessment, with such accommoda- in a challenging general curriculum; that all students with disabilities have an tions as needed, to determine their educators, service providers and parents equitable opportunity to learn and to progress against the most basic compo- share high expectations that they can demonstrate what they know and are nents of standards established for all - attain, in whole or in part, standards able to do.'9 Indeed, most students with i.e., a set of very broad standards that established for all other students; their disabilities can participate in these large encompass the full range of abilities that teachers and providers rely on "state-of- scale assessments, in whole or in part, if have been broken down into compo- the-art" knowledge and instructional provided accommodations or other test nents or benchmarks of learning. strategies; and educators, parents, modifications. students and their advocates effectively Inclusion of students with disabilities in use information gathered from the Sometimes accommodations are not assessments can provide useful informa- assessment process to inform student enough for some students with disabili- tion about the system and the individual.progress and systems improvement. ties to participate in state or district-wide The results of state and district wide assessments. Particularly, if accommoda- assessments can serve as indicators that Continued on page 21 PAGE 5 39 TASK Newsletter, April 2000 2000 TASH ANNUAL CONFERENCE
2000 TASH Conference "Moving the Edge"
December 6-9, 2000 The Fontainebleau Hilton Resort and Towers 4441 Collins Avenue, Miami Beach Florida 33140 Phone: 305-538-2000
TASH members, as individuals, to live the lives of their choice -- as integralnewly-added event will provide advocates, families, and profes- and meaningful parts of the community. attendess a chance to speak one-to- sionals, need to keep paving the one with presenters from around the way and stretching the boundaries for Mark your calendars now to be at the world who have prepared an what is considered the "cutting-edge" internationally acclaimed TASH Annual interactive presentation on a variety in supporting people with disabilities Conference, "Moving the Edge." Check our of topic areas. Feel free to take your web site regularly
PAGE 6 0 TASH Newsletter, April 2000 INTERNATIONAL SELF-DETERMINATION CONFERENCE
WIEZDOM CITIZEKttlIP 13UNDING The Westin Seattle 9 Seattle, Washington U.S.A. July 29-31, 2000
. . , ver 1,200 people from around the world are expected to participate in this groundbreaking conference on self-determination and individualized funding, including people with disabilities, family members, community advocates, professionals, service providers, researchers, administrators, and government officials. The conference will focus on sharing experiences and lessons from people's lives, demonstration projects, and research initiatives around the world. Conference attendees will also participate in consensus building activi- ties to arrive at an "International Declaration," which will outline a shared view of the fundamental principles of Self-Determination and Individualized Funding. 140033thi ONIONflet ,4:11FIRGIZ11.13
I For more information please visit the website http://members.home.net/directfunding/ or contact Denise Marshall at [email protected] or800-482-8274 x 103 . From outside of the U.S. use the toll-free number877-909-8274 See pages 29-30 of this Newsletter for the Conference Registration Form. Anchorage School RegSte Are You District (ASD) Registered 10\1051, Seeking applications to Vote? for '99-'00 and '00-'01 school The National Mail Voter years: Registration Form is the one document that allows you to register to vote from Special Education Teachers, Deaf Education anywhere in the United States. You can obtain the voter registration form from the Teachers, Interpreters for the Deaf, Speech Federal Elections Commission by going to Language Pathologists, Occupational Thera- http://www.fec.gov/votregis/vr.htm. You will pists, Physical Therapists, Adaptive Physical need Adobe Acrobat Reader to view and print Educators, Audiologists, Blind or Visually the forms. You may also obtain a copy by Impaired Specialists and Psychologists. calling TASH at 410-828-8274 x104 or by sending an e-mail to
PAGE 7 TASHNewsletter,April 2000 COLLABORATION AT WHITTIER NIGH SCHOOL
icardo is a sophomore at his local The teams also have divided their daily high school and has qualified for schedules into blocks of time. Instead of especial education services four of teachers teaching five periods each day, his years in school in the United States. they teach two blocked periods per term He lives at home with his older sister, Collaboratio plus one class outside of their team. By mother, and step-father. The family at block scheduling integrated subject moved to Southern California from matter, the teacher/student ratio is Mexico when Ricardo was 8 years old. Whittier 1-figh reduced from approximately 180 to 90 students per teacher. Block scheduling Ricardo has excellent social skills and is has dramatically increased the time able to initiate positive interactions with School available for teachers to collaborate and others. He has some skills in using and has resulted in more personalized understanding both English and Spanish. teacher-student time (Thousand, He has difficulty learning when being Rosenberg, Bishop, & Villa, 1997). lectured to, or when reading and writing are the only forms of instruction. The elimination of the "special education teacher" label was considered critical to At this time Ricardo is fully included at changing the perception that only his neighborhood high school. His "specialists" can work with students with family is determined that he will partici- disabilities. Thus, the high school pate in school activities, both academic BY MARY FALVEY, LORI selected the term "support teacher" to and social, and that he be provided with ESHILIAN AND MARY identify staff who, in collaboration with supports when needed. JANE HIBBARD classroom teachers, supported (and coordinated services for) students Ricardo is taking a math/science block, eligible for special education. Support and a humanities block which consists ofage appropriate core curriculum in ways teachers take on a variety of collabora- English and social studies, physical that make sense to them. tive roles with classroom teachers. They education class, and metal shop. He co-teach or team teach with content area receives support in all his classes from a Ricardo attends Whittier High School teachers within heterogeneous class- support teacher (formerly known as a (WHS), a large high school located in therooms and function as a support to all special education teacher) or a para- East Los Angeles County. The school students, not just those who qualify for professional from the special education restructured using the Coalition of special education services. department, who work collaboratively Essential Schools (Sizer, 1992) common with the classroom teacher. Ricardo is principles in order to create a collabora- To enable members of the team to work provided with materials on tape or video, tive spirit and opportunity. The Coalitionmore effectively together, the administra- highlighted materials from his textbooks,of Essential Schools are founded on the tion scheduled a common preparation and computer assisted instruction in principles that the educational commu- period and located classrooms in close order for him to understand the major nity must develop personalized and proximity to one another. Teachers are content. With regard to math, he is meaningful learning experiences so that more responsive to, and assume greater provided with a calculator, a laminated all students can succeed. responsibility for students experiencing copy of the formulas utilized, real life some difficulties because they have more examples of when and how to use math Restructuring was first implemented in time and opportunity to meet regularly skills, and a multiplication chart to assistthe lower grades, when 9th and 10th his meaningful participation in class. grade teachers and students reconsti- tuted themselves into smaller teams. For Ricardo is an active member of all of his juniors and seniors, attention also was The amount and type of collabora- classes, benefiting from the accommoda- directed toward career paths (e.g., tion and in-class support provided tions and adaptations created establishing a Computer Academy) to to classroom teachers is deter- collaboratively by his support teachers, assist students in identifying career mined by the faculty team, which paraprofessionals, and classroom opportunities; making connections includes the student, and is based teachers. He also benefits from the use between work, their community and the upon his/her individual learning of differentiated instructional procedures curriculum; setting educational and needs. used by all his classroom teachers, who career goals for themselves; and internal- share the disposition that all students izing the need for achievement in high can and should be learning meaningful school. 42 Continued on page 9 PAGE 8 TASK Newsletter, April 2000 COLLABORATION AT WHITTIER HIGH SCHOOL
e Collaboration at Whittier inclusion is occurring, teachers might e Mary Falvey is a ° High School have two or three special educators professor of special interacting with them to support stu- 60 Continued from page 8 education at California State dents with various labels in their class. University, Los Angeles, a This was an inefficient and confusing use former Executive Board member of the special educator's time and of TASH, and former President to share information about students' expertise (Falvey, 1995). Therefore, of Cal-TASH.Lori Eshilian and progress and challenges. WHS moved to a non-categorical system Maly Jane Hibbard are support,. of support for students in which each eachers at Whittier High 41 The "all-too-frequent" method of support teacher is assigned to classroom School. organizing students in secondary teachers, and provides whatever support programs -- referred to as "tracking" is needed for the students to be success- has been intentionally decreased at this ful in those teachers' core curriculum '4% high school by eliminating what was classes. New Legislation previously called the "basic" track, the Introduced to Aid Families track identified for the students who Since all students are enrolled in core were the least successful. All students, curriculum classes, this is where support Family Opportunity Act of 2000 including those with disabilities, are is needed and provided. The additional required to enroll, participate, and learn support benefits not only those students Long time TASH friend Marcie Roth in core college preparatory courses identified as needing specialized services, participated in a press conference recently throughout their four years of high but many other students who do not to announce the introduction of S. 2274 school. qualify for specialized services but who, Grassley-Kennedy-Jeffords-Harkin FAMILY nevertheless, experience their own OPPORTUNITY ACT OF 2000. Currently, unique challenges in learning. The families must stay impoverished, become Unlike traditional high school settings in impoverished, place their child in an out of which only those teachers in the same amount and type of collaboration and in- home placement or simply give up custody "department" or discipline work to- class support provided to classroom in order to secure the health care services gether, the math and science teachers teachers is determined by the faculty their child needs under Medicaid. The work to create and teach a math/science team, which includes the student and is Family Opportunity Act of 2000 would block; and the social studies and English based upon his/her individual learning change this by allowing states to be able to teachers work together to create and needs. offer Medicaid coverage to children with teacher a humanities block. In addition, significant disabilities living in middle the support teachers within each team income families through a buy-in program. work collaboratively with classroom References Falvey, M. (1995). Inclusive and Marcie shared her experiences of struggling teachers to write curriculum, plan with the demands of providing the supports lessons, and develop and deliver educa- heterogeneous education: Assessment, curriculum, and instruction. Baltimore, and health care needs for her children. "All tional programs to meet the needs of my knowledge about systems didn't help MD: Paul H. Brookes Publishing Co. students assigned to their team. These my kids get the help they needed." new groupings offer faculty opportuni- ties to go beyond their initial area of Sizer, T. R. (1992). Horace's school: The Family Opportunity Act of 2000 is expertise and certification and engage in Redesgining the American high school. intended to address the two greatest "role release," the "giving away" of one Boston: Houghton Mifflin. barriers preventing families from staying together and staying employed: another's specialty knowledge and skills Thousand, J., Rosenberg, R., Bishop, 1. Lack of access to appropriate services, so that all may become "generalists," and; more capable of teaching adolescents and K. D., & Villa, R. A. (1997). The evolution of secondary inclusion. 2. Lack of access to the advocacy and young adults. assistance services they need to help cut the Remedial and Special Education, 18(5), "red tape" to meeting their children's health 270 Support teachers quickly realized that 284. care needs. their old way of matching students and special education support was clearly Your Senators need to know how important categorical (e.g., students with learning this act will be to families caring for a child with a disability. You can contact them at disabilities were assigned to teachers www.senate.gov or the Capitol switchboard, labeled Resource Teachers, students with 202-224-3121. low incidence labels were assigned to Special Education Class Teachers and For additional information go to NPND's rooms). As a result, in schools where 13 web site,
curriculum, learning, issues of poverty 2. Ongoing instructional strategies based and race, and more. on isolated, boring instruction that is disconnected from the real lives, family In 1989, when Wayne State University's and community experience of students. "systems change" grant for inclusive education began, I attended a meeting of 3. The need for democratic processes of project directors throughout the country. decision-making in schools that em- At one point I asked the question: "Who power students, families, teachers, and here understands best practices in other school staff. general education instruction?" No one came forward! Although we've learned However, we have also been concerned much since then, we've a long way to go. about the lack of explicit attention to two major additional dimensions of For inclusive education to move ahead, schooling: we must be part of an overall effort to reform and renew schools. We must be The ongoing segregation of students part of the dialogue about standardized with different learning styles and abilities testing and curriculum, whole language into special programs for students with Inclusive education is now an impor- versus phonics only, the challenges of disabilities, those considerated "at risk", tant international movement in urban school systems, tracking and gifted, or those for whom English is not which students with disabilities, and untracking, the politics of unions, and their first language. others identified as having "special the many other issues in which schools needs" are moving back into the general sit in the middle. We particularly have The lack of attention to the social education classes with support. Two to think about inclusive schooling in the and political context of schooling, major areas of challenge are obvious as broadest sense. Segregation by race, specifically the increasing inequality in we move forward. socio-economics, and language tend to schools and communities, pressure to occur concurrently with segregation by promote standardized testing that First, schools are being challenged to ability. One is very often linked to the separates students, families, and whole structure their work differently. Over other. We can't afford to be only about communities by race, socio-economic time, special education and other "our kids" because, if we take that status, and ability, and the growing focus "special programs" were developed based position, we perpetuate the continuance of seeing the purpose of schools as on the presumption that students of of schools that reject them. preparing workers rather than promoting vastly different academic, social-emo- student-centered growth and learning. tional, and sensory-physical abilities There are many places in which to start could not learn effectively together. school reform efforts, and work has The Five Principles of Whole Schooling Inclusive education challenges that begun in a few of them. We report In an effort to address these critical assumption at a fundamental level. We briefly here on one such effort and invite factors in effective schooling, in 1997 we are seeing schools use a range of strate- others to join us in this critical work. developed the Whole Schooling Model gies to facilitate instruction of very for School Reform that is based on the diverse learners: multi-age classes, One School's Reform Efforts following five principles: multiple intelligences, differentiated In 1997, colleagues from Michigan and instruction, cooperative learning, and Wisconsin collaboratively developed a I. Empower citizens in a democracy. more. We are also seeing a growing framework for improving schools that The goal of education is to help students number of approaches and models of draws from and builds on the experi- learn to function as effective citizens in a providing "support" for learning such as ences of progressive school reform democracy. support teachers, aides, peer buddies, organizations nationally, particularly circles of support, and interdisciplinary Accelerated Schools, Comer's School II. Include all. All children can learn teams. Development Program, Howard together across culture, ethnicity, Gardner's Project Zero, and Sizer's language, ability, gender & age. However, the challenge works both ways. Coalition for Essential Schools. Like the For those of us who started this journey developers of these programs, we were III. Teach and adapt for diversity. with the needs of kids with disabilities in concerned with several continuing facts Teachers design instruction for diverse mind, we are now confronted with truly of schooling: learners that engages them in active being a part of the school. In so doing, learning in meaningful, real-world we are challenged to understand the 1. Lack of supports of families and activities; develop accommodations and complexities of issues we've only connection with communities. analyzed from the periphery previously: 44 Continued on page 11 PAGE 10 TAW. Newsletter, April 2000 WHOLE SCHOOLING
WHOLE SCHOOLING: promote both equity and excellence in states: California, Florida, Ohio, New Linking Inclusive educational practices. Hampshire, New Mexico, and New York. Individuals from these and other states Education to School ckls Conduct research to understand best have joined the work of the Consortium Reform educational practices. at a growing rate. Continued from page 10 The Whole Schooling Consortium's Research efforts have grown out of the collabora- The Whole Schooling Consortium is adaptations for learners with diverse tion of general and special education intent on building a collaborative needs, interests, and abilities. faculty and school personnel. The network of effective research to under- Consortium is presently engaging in the stand quality educational practices and IV.Build community & support following types of activities. promote their implementation in learning. The school uses specialized schools. At present two projects are in school and community resources (special School Renewal through Whole process. education, Title 1, gifted education) to Schooling build support for students, parents, and Schools can use the Five Principles as 1. Whole Schooling Research Project. In this teachers. All work together to build ways of organizing their school improve- federally funded research project, the community and mutual support within ment and renewal efforts. A support Consortium is identifying six schools in the classroom and school, and to provide team of external critical friends can Michigan and Wisconsin that demon- proactive supports for students with provide assistance to school staff in this strate exemplary practices in Whole behavioral challenges. process. The Consortium is also inviting Schooling. The Consortium's goal is to people in support organizations study how practices associated with V. Partner with families and the universities, state departments, interme- these principles interact with one community. Educators build genuine diary school districts, and others to another to support inclusion and collaboration within the school and with join in taking this work to the next level learning of children with and without families and the community; engage the of development and implementation. disabilities. The Consortium will school in strengthening the community; highlight promising practices and and provide guidance to engage students, Networking Schools and Individuals describe its findings as this project parents, teachers, and others in decision- The Whole Schooling Consortium is continues. making and the direction of learning and composed of two types of members: (1) school activities. schools that see the Five Principles of Whole Schooling as the type of school What is the Whole Schooling Consor- they want to be; and (2) individuals who Rather than tium? are committed to the Five Principles of looking in from the The Whole Schooling Consortium is a Whole Schooling and are willing to work outside, or wishing network of schools, university faculty, someone else would as part of the Consortium to promote its teachers, parents, and community 'include work. members whose goals are to: inclusion' in their school reform efforts, The Consortium has an active and Promote Whole Schooling practices we can work with growing membership in multiple states general education through research, professional develop- and countries. The Whole Schooling colleagues of like minds ment, and advocacy, particularly in Consortium facilitates networking of and create our own schools that serve children from low schools and individuals to provide path. Others are income families and/or who are at risk. support for ongoing school and personal engaged in similar work. To the degree we can growth and development. In addition, Build a grassroots network of schools, work to take these next schools and individuals may more university faculty, and community steps, while keeping the formally come together as a state, members who can provide mutual commitment and focus provincial, or local Whole Schooling support to one another. that led us into inclusive Consortium to assist their efforts and education work in the contribute to the overall national agenda first place, the greater % Link urban, suburban, and rural of the Consortium. As of February will be our impact. schools in promoting Whole Schooling 2000, efforts are in process to affiliate practices. schools and develop an active support team for school renewal using Whole Develop a network of exemplary Schooling as a model in the following schools that are intentionally seeking to 4 Continued on page 12 PAGE 11 TASK Newsletter, Aiprrig2000 WHOLE SCHOOLING
WHOLE SCHOOLING: Others are engaged in similar work. To Linking Inclusive the degree we can work to take these Education to School next steps, while keeping the commit- Reform ment and focus that led us into inclusive Michael Peterson is Professor education work in the first place, the in Teacher Education, College Continued from page 11 greater will be our impact. We're happy of Eduation at Wayne State to be part of this effort. University in Detroit, 2. Eastside Detroit Whole Schooling Cluster. Michigan. Support faculty are involved in working with three schools on the eastside of Detroit in selected areas. While initially He is co-founder of the Whole adopting Whole Schooling as the reform Schooling Consortium, a model, requirements by the funder led to network of schools, teachers, adoption of Accelerated Schools as the universities, and parents. leading model, and the Consortium is If you are an educator, parent, or working in concert with regional staff in community member who believes Professor Peterson may be support of the schools. All schools have that schools should be inclusive, made a commitment to inclusive educa- democratic, and authentic, contacted at 313-577-1607 or tion, and the Consortium is conducting If you are tired of educational you may send an e-mail to research regarding this school reform policies that hurt children and
PAGE 12 46 TASH Newsletter, April 2000 APRIL 2000
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PAGE 13 4 7 TAM Newsletter, April 2000 av-491.1fP. New Video Series for the Special Educator! compakrowT, SitTitiaif# REACHING STANDARDS rkm.tom J[:111GIC.V, +JO 0 ® PERAW THROUGH El EARN! RI Algt-OOP ;;",,:gatgs,'' COOPERATIVE Litt 0ssaaratams 'COO$1 0.ffAG3NO Rb grANDA LEARNING AWMADL. CO a 11WM (LTADINOVIG PROVIDING FOR ALL LEARNERS IN it 41 1-'444 GENERAL EDUCATION CLASSROOMS
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These four videos examine how Cooperative Learning strategies are successfully implemented to assist diverse learners in developing competence in the four major content areas. Each video and accompanying teacher's guide focuses on effective strategies for achieving the standards specific to that curricular area such as: Tape 1: ENGLISH/LANGUAGE ARTS Dr. Spencer Kagan & Laurie Kagan Skills in strategies of the writing process Skills in strategies of the reading process The speaking and listening process as tools for learning Strategies IP to motivate students into, through and beyond literature II I I
Tape 2: MATHEMATICS Individual Content area tape and teacher's guide: Using multiple strategies in problem solving Applying properties of numeric English/Language Arts Order #RSCLI-TASH2 $149.95 concepts Performing processes of computation Applying properties of measurement Applying concepts of statistics and probability Mathematics Order #RSCL2-TASH2 8149.95 Social Studies Order #RSCL3-TASH2 8149.95 Tape 3: SOCIAL STUDIES Understanding the historical perspective Understanding of civic life, Science Order #RSCL,+-TASH2 $149.95 government and politics Understanding government and its relationship to Additional teacher's guides available with purchase of any of the American society Understanding family life and generational concepts above: 1-9 $29.95 ea.; 10 or more $19.95 ea. Tape 4: SCIENCE TEACHER'SGUIDES EngIish/Language Arts Order #RSCB1-TASH2 Understanding the basic aspects of earth UCrov:Ofbaarilprovide Mathematics Order #RSCB2-TASH2 and space Understanding genetics, supportca2amfdboa3 Social Studies Order #RSCB3-TASH2 interdependence and energy Under- samplelessons/exercises standing basic concepts of physical sci- Ceze:0020E119Goceethzerfbog Science Order #RSCIN-TASH2 ences, including motion Practicing and subject For additional information about these materials or other that support curricular instruction/ internalizing the scientific inquiry process adaptation, please see our Website at www.nprinc.com. Or call us at 1 800-453-7461
Order from: National Professional Resources, Inc., 25 South Regent St., Port Chester, NY 10573 Phone: 1-800-453-7461; Fax: 914-937-9327; World Wide Web Site: www.nprinc.com. Amex, Visa, MasterCard, prepaid and purchase orders accepted. Shipping & handling: Add S4.50 per book; S5 per video. For book orders of S50 and above, add 10% not to exceed $40. Canada add 20% to all orders. Federal Tax ID #132619258. Free catalogs available upon request. Authors Wanted: For manuscript submission guidelines, call Acquisition Editor: 1-800-453-7461. 48 O' THY GARTNER KERZHEN LIPSKY
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 hie both? at the City University of New York, address many of the critical issues facing educators who are supporting students with disabilities in inclusive settings. Through a dynamic and powerful presentation Drs. Lipsky and Gartner discuss: The Consequences of Higher Standards The Reauthorization of I.D.E.A. The Seven Factors of Successful Inclusion The Restructuring of Our Schools Visit schools across the country and observe first-hand how the learning needs of all students are being successfully met in general education environments. Learn how special education is a service not a location. 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 asthe general education population. Whether a regular or special educator, this video is a must for pre-service and inservice training.
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9 COMMUNITY INCLUSION
esearch indicates that THE INCLUSION OF A YOUTH by incorporating systematic people with dual- WITH SIGNIFICANT reinforcement of signed ensory impairment DISABILITIES IN A protest and facilitating benefit from instructional communication with the programs that encourage COMMUN 1TY ENVIRONMENT community members that do choice, autonomy, and not use sign language. participation with non- BY TERI JASMAN, KEITH STOREY disabled peers and federal AND NICHOLAS J. CERTO The MAPS meeting identi- legislation supports this, as fied a neighborhood com- well. To most successfully munity center that offered support people with disabili- after- school classes as an ties in integrated environ- ideal place to increase ments, the focus of participation should community involvement. A Self-Defense be on the activity rather than the level of for Young Women ages 14 to 17 class recognize roughly 60. When prompted performance. This way, all individuals was the most appropriate to incorporate at home, she used an object communica- are supported to participate to the best of these goals of increased communication tion board to choose preferences and their abilities, rather than being judged and participation with Julie's peers and predict upcoming activities. against one another. to increase self-determination through Intervention signing protest. There were five students In terms of learning in integrated in the class. The intervention took place within a environments, individuals who are self-defense class for young women at labeled with deaf-blindness have a long Phase II: Class Activities and Partici- Julie's local neighborhood community skill acquisition learning curve due to pant Involvement center. Julie was the only student with a the limited sensory input available to Julie participated with prompts given disability in the class. Dependent them. Natural supports can increase from her peers and the researcher. The measures were the frequency of commu- motivation and help to shorten this researcher showed the entire class and nicative responses to four separate learning curve, while at the same time the two teachers proper prompting interventions, ranked from most to least natural supports promote mutually techniques. Prior to this intervention it intrusive: a) a group request from the beneficial relationship development and was determined that without any teacher to the entire class, b) a signed inclusion. physical prompts and tactile cues paired cue given to Julie from a peer, c) a signed with signs, Julie did not initiate commu- cue given from a peer to Julie paired with The purpose of this article is to provide nication or respond to others. The data an object or tactile cue, and d) the an example of how community-based collection tool was designed to evaluate researcher physically guided Julie hand instruction, natural supports, partial whether using adaptations would over hand, demonstrating the correct participation and adaptations for com- increase the frequency of communicative response. munication strategies, as well as typical responses from Julie to her peers. The physical adaptations enabled an indi- Phase I: Determining Preferences vidual with deaf-blindness and intellec- and Setting Goals tual disabilities to participate in a young Julie's family and team of educators/ women's self-defense class. service providers met to have a MAPS (Skilled use.] of natural About the Participant (The McGill Action Planning System) meeting. Team members included Julie, supports can increase At the time of the study, Julie was a 14- her parents, brother, sister, teacher, motivation and encourage year -old female with significant intellec- paraprofessional, vision teacher, her case participation of an tual disability, limited sensory input due worker, her occupational therapist, to deaf-blindness and delayed physical individual with physical therapist, a behavioral special- development. She attended a special day disabilities. ist, and an inclusion specialist (the first class at her local middle school. She had author). The team discussed her some residual vision and was totally strengths and interests and established deaf. Julie was non-verbal and used goals, such as increasing emotion signs about 10 signs regularly and could Continued on page 17 50 PAGE 16 TASH Newsletter, April 2000 COMMUNITY INCLUSION
THE INCLUSION OF A YOUTH prompt, guide and initiate communica- situations of peer pressure and practice WITH SIGNIFICANT tion through the use of object cues, sign saying, "No," "Not now," or,"Stop." cues, and tactile cues. The instructional Julie was given options and opportuni- DISABILITIES IN A program consisted of the following ties to try the activities differently, but COMMUNITY ENVIRONMENT lessons: a) Julie took off her glasses; b) the content of signing "stop" was Continued from page 16 Julie gave glasses to researcher; c) Julie maintained. For example, she would try received whistle from researcher; d) Julie the activity with another student, do it put on her whistle; e) Julie felt mat and sitting down, or take a break. She was instrument documented the occurrence ofsat down;peer signed, "hi," to Julie respected whenever she protested. the following components of the cues: a) and Julie signed, "hi," back; g) Julie During these times of real-life protest, independent, b) ASL sign cue, c) tactile/ immediately signed, "hi," to person to instruction was given from peers to Julie object paired with sign cue, and d) her left; h) researcher lightly shook to sign, "Stop." communicative responses prompted by Julie's shoulder continuously; i) peer hand over hand modeling. gave whistle and signed to Julie, "When mad sign stop;" j) Julie signed stop; k) There were sixteen trials (requests from aJulie was asked to feel target; 1) Julie peer to Julie) over the course of each kicked yellow ball; m) Julie received class session. In each trial, Julie had whistle from peer to left; n) Julie signed potentially 4 opportunities to make a something she did in class during communicative response. For example, "check-in;" and, o) Julie passed the with the teacher making a request to the whistle to student on left. entire class, if Julie did not respond appropriately with her classmates, one ofJulie was given up to four consecutive Julie's classmates would sign a simple requests per trial. Her first opportunity Results instruction to her (second opportunity). to respond was when class instructors Data were collected for eight days. There If Julie did not respond to the signed gave directions to the entire class. If were 16 trials for Julie to respond on prompt from a classmate, a different Julie gave no response, a peer in her each of these days. For each trial, Julie classmate would sign the same request class gave a signed cue to her. If Julie had up to four opportunities to respond and additionally add either a tactile did not respond to the sign cue, another (i.e. independently, signed cue, object/ object prompt paired with the signed peer would use the same sign cue and tactile paired with signed cue or hand prompt. An example of this could be the provide her with an object or tactile over hand). Julie responded zero times sign "stand up" paired with a tap on the prompt. If Julie gave no response to out of 128 opportunities when she was knee. object or tactile cue paired with a sign given instructions with the rest of the cue, the researcher would demonstrate class (independent cue). Upon second Phase III: Adaptations and the response by guiding Julie to perform request, Julie responded three times to Curriculum Modification the response with hand over hand the 252 signed cues from her peers. On The specific physical adaptations assistance. the third request when object or tactile developed were: a) blowing a whistle cues were paired with signed cues, she (substituted for shouting "No, get The class also had a processing compo- responded 62 out of 381 opportunities back!") and b) kicking a yellow ball nent called, "check-ins." Sitting in a presented by her peers. When Julie did (substituted for hitting a punching bag). circle, the participants would pass the not respond to tactile/object cues paired The yellow ball adapted from the whistle around to indicate whose turn it with signed cues, she was shown hand punching bag her non-disabled peers was to talk. Students would share over hand by the researcher. Under this used provided a better contrast between something positive about themselves. intervention, Julie responded to her objects in Julie's visual field.It also When it was Julie's turn she would be peers 63 times out of 450 opportunities. moved when she kicked it and took less prompted to hold the whistle from the strength to kick than the punching bag, peer who had previously shared. Julie Discussion resulting in a more meaningful experi- would share something with the group The data indicate that Julie responded ence for her. via signs prompted by the researcher, best to sign cues paired with objects or and pass the whistle on. They referred tactile prompting. A combination of Phase IV: Implementation of to this process as, "healthy bragging". adaptive communication strategies and Instructional Programs adaptations to physically gain access to The modified curriculum, which was The other major task analyzed compo- the environment was effective in increas- derived from a task analysis of the class nent of the self-defense class was setting limits. The class would role play activities, utilized other students to Continued on page 18 PAGE 17 TAM Newsletter, April 2000 COMMUNITY INCLUSION
THE INCLUSION OF A YOUTH to learn about self-defense and the wider WITH SIGNIFICANT topic of themselves in an inclusive ARE YOU A UNIVERSITY environment. DISABILITIES IN A PROFESSOR? COMMUNITY ENVIRONMENT For example, one day in class Julie sat Continued from page 17 down, refusing to perform the activity of TASH has a Student kicking the yellow ball. There was a Membership Program! temporary delay while the teacher, then a The program was developed through ing communicative responses and peer, then a second peer, and finally the discussions with professors who participation. researcher, prompted her to stand up. Eventually after four requests Julie stood wanted to encourage professional identity through student membership To make inclusion a reality for many up. Later, during the check-in toward the end of the class, one of Julie's peers in a strong advocacy organization students with significant disabilities, it is while assuring that their students imperative that adaptations are devel- mentioned that Julie's refusal seemed like a, "gutsy, strong stance; the kind of had access to enough issues of JASH oped, systematically taught, and practi- for them to be able to complete a cal enough that teachers and non- attitude, traditionally, girls are taught not variety of journal article review and disabled peers can accommodate to themto do." This illustrates some of the comparison exercises they assign. easily. Challenges involved with making benefits of inclusion for people without disabilities, as well as an individual with this a successful project included The package works like this: recruiting non-disabled peer support to significant disabilities. They learn about teach appropriate prompting, training themselves in a wider social context; Professors can either assign TASH teachers to include the particular studentthey learn about diversity and the membership as one would a text with disabilities, and making adaptations feelings that go along with it; and, they book or package of readings, or can simple to use so that any member of the learn about the give and take of an integrated community. offer it as an option. Either way, if class could easily give extra support. ten or more students join, they receive a discount off the already low A good placement and well-designed associate member rate. The discount adaptations also helped to make this amount increases as the number of project successful. The staff was Teri Jasmin is currently a program students signing up increases. supportive philosophically of inclusion, specialist with the Arc San Francisco. they had support on-site, if needed, and Regardless of how many students direct instruction was given to the Keith Storey is currently Associate join, TASH provides a year's worth of teachers and peers. Professor of Education at Chapman University in Concord, California. back issues of the journal to all students signing up under this plan. As the results indicate, Julie became less This means your students will start reliant on the researcher to model hand Nicholas J. Certo is currently Professor of Special Education at San Francisco the semester with a year's worth of over hand responses as the class pro- cutting edge research on their shelf gressed. In addition, the data demon- State University. and can build their collection over strate that peer interactions using the years to come. Under this plan, objects, paired with signed cues, in- Questions, comments and requests for students receive all of the regular creased as hand over hand demonstra- additional information about this membership benefits during the tion decreased, depicting an inverse article may be addressed to: Keith coming year in addition to an relationship. This suggests that natural Storey, Chapman University, 2600 extra full year's worth of journals! supports can increase motivation and Stanwell Drive, #110, Concord, CA encourage participation of an individual 94520, (925) 246-6128, e-mail: An introduction to TASH is likely to with disabilities. As Julie's familiarity [email protected] be one of the most valued resources with her peers grew, her reliance on a you can offer students as they enter specific support person faded. the disability community in their There were occasions when Julie's professional capacities. To receive behavior did have an effect on the rest of materials or to learn more about the class. At times she was disruptive TASH's Student Membership Pro- and distracting to the class. These gram, contact Rose Holsey, 410 -828- situations provided a real-life framework IAS 8274, ext. 100 or e-mail: for the teachers and students in the class [email protected]
PAGE 18 TASH Newsletter, April 2000 SC E® L-LONKESERVICES
School-linked Cervices [This is part one of a two part article.] referral policies of school psychologists. The old maxim, "think globally, act American science actually comes in two locally" is very likely moving up flavors; positivistic ("quantitative" on the hit bumper sticker charts. methods) and interpretivistic ("qualita- Its time is here, now Most sociologists tive" methods). The term "positivistic" agree that the age of modern industrial- refers to the philosophical idea that there ization has ended but, until recently, few is rule-governed order throughout all have agreed on just what has replaced it. aspects of the universe, and that our task How are we to characterize and therefore as scientists is to discover the underlying think about the present age? There is laws that transform hypotheses into growing agreement and awareness that facts. The method of experimental the modern industrial period has been control to test a prediction is favored, replaced by globalization, a new concept Reinventing and since these operations can best be that includes, but is bigger than, the idea carried out by converting observed of a global economy. There are profound Community phenomena to numbers, positivistic implications of this transformation for science is sometimes referred to as the families, professionals and students in the Age of "quantitative." who, for the most part, make up mem- bership of TASH. Globalization The second type of science employed by educational researchers is one favored When TASH started in the 1970s, we BY WAYNE SAILOR largely by sociologists and anthropolo- were embedded in the structures of the gists, and is called "interpretivistic" modern age. The United States had teachers. The civil rights implications of (sometimes "subjectivistic"). These evolved into a "welfare state." At the the American Constitution gradually led scientists prefer to collect data from the turn of the last century, human services to the extension of these educational perspective of the participant in the were formed to assist people from other services to all children in the interests of phenomenon of interest. Thus, the view countries to successfully acclimate to the "equity under the law." Then, PL 94-1.42 of the "insider," supported by observa- cultural and linguistic differences they was passed in 1974 to guarantee that tions, documents and other sources of would encounter in America. The students with "handicaps" of all kinds information can lead to understanding growth of industry drove immigration would be entitled to services such as by building, for example, a comprehen- policy and indirectly, welfare policy, to those received by students with minor sive case study, or ethnography of the ensure a healthy new workforce in an disabilities.It took TASH to eventually phenomenon of interest. Since interpre- expanding economy. The success of break down the distinction between tation is necessarily subjective, the these programs in supporting economic handicaps and disabilities by providing methods of investigation are called growth led to federal policy supporting demonstrations that people with even "qualitative." welfare systems through taxation. By the very severe disabilities could work and middle of the twentieth century, the live interdependently, the same as Since the welfare state grew under the gradual conversion of the U.S. economy everyone else. dominance for medicine and the medical from a manufacturing-based economy to model for science (positivism), the other a service-based economy helped to fuel The process of inventing the welfare brand of scientific investigation, favored the expansion and bureaucratization of state was characterized by three "hall- by sociologists, languished in the these systems at both the federal and marks" of the modern, industrial age: shadows. The process is nicely illus- state levels of government. categorization; positivistic science; and trated by the controversy over Facilitated professionalization. Special education is Communication (FC). Sociologically- Welfare systems expanded in scope and a marvelous case in point. Each label oriented special educators such as Doug diversity of coverage fueled by categori- (ie. ED, SED, LD, SMH, etc.) implies Biklen reported successful applications zation, labeling, prescriptive services and specialized knowledge, discrete services of FC using qualitative methods. Behav- increasingly specialized professionals. and specifically trained professionals. iorists (positivistic orientation) set up Special education evolved, as one part of For convenience of service delivery, experiments to test FC and largely the welfare state; to provide necessary specialized "places" were introduced in services and supports to students who the context of education. Special displayed certain "disabilities" which education grew as new categories could be helped by specially trained proliferated, fueled by the diagnosis and Continued on page 20
PAGE 19 Q 1/4) TASH Newsletter, April 2000 SCHOOL-LINKED SERVICES
Reinventing Community in the across categories. University special So as TASH members, what can we Age of Globalization education departments are merging with achieve locally? First is to make com- Continued from page 19 their brethren in general education. mon cause with others in the same Education psychology is reinventing situation. "Common cause" in this sense itself to produce healers and problem means joining with, and supporting the concluded that only facilitators commu- solvers instead of test-giving efforts of, others pursuing a local nicated, not the persons with autism categorizers. When the federal govern- humanistic agenda, while educating who were being facilitated. Because the ment reauthorized IDEA, it permitted a them about TASH issues affecting dominant paradigm for science produced measure of decategorization for the first persons with disabilities. People a vote of "no confidence" in FC, it time, up to age 9. Furthermore, it concerned with conservation, preserva- became de facto a gatekeeper, preventing strengthened policies impelling inclusion tion of the arts, air and water quality, access to FC despite documented and mandated aspects of Positive smart growth (of real-estate develop- successes reported from the other Behavior Support, all of which run ment), second-hand smoke and other paradigm of science (arguably, the one counter to the strict categorical impera- health hazards and, eventually gun most appropriate to the investigation of tives of the modern industrial service control, are likely to have constituencies this particular phenomenon because of system. in common at the local, community (or its low incidence of applicability). This neighborhood) level. The TASH agenda process exactly mirrors what happens in The history of TASH has been to concen- of choices, jobs, self determination medicine around holistic health care trate at the federal level for public policy. inclusion and supported life in the approaches and herbal remedies. TASH members have been and continue community is consistent with the to be active in reviewing and processing agendas sought by many other groups, In effect, our paradigm of science grants, in attending policy conferences inparticularly those concerned with the determines what we decide we can Washington and in attracting governent health and well-being of children and "know" and therefore determines our officials to TASH conferences. Through persons who are victims of poverty. choices among options in all areas of life. its chapter network, TASH has been Election to school-boards, county The paradigm of science for the modern, similarly influential at the state govern- commissions, city councils, neighbor- industrial period has been positivism. ment level in at least a subset of states. hood political action groups, etc., can What will it be in the age of globaliza- Is is not at all certain that, as we move help move a TASH agenda through tion? into the age of globalization, concentra- political action and common cause at the tion of effort at federal and even state local level. The third hallmark of the industrial age levels of government will produce the has been professionalization. In the same results for persons with severe Secondly, TASH members can pursue an human services sector of the welfare disabilities that it has in the past. inclusion agenda through the schools on state, the process of categorization and the basis of gain for all, rather than on labeling has produced a similarly In the industrial age, government policy the basis of federal issues such as LRE segmented array of highly specialized was directed to the national interest. In policy and civil rights. TASH members professionals, with each specialization the age of globalization, multinational and special educators have developed yoked to its categorical "beneficiaries" corporations are in the drivers seat and major educational innovations that are (or, as John McKnight has reflected, "its policy is increasingly directed to corpo- needed now for all kids, not just those victims"). In most universities the rate rather than national interests. with severe disabilities. Positive Behav- special education department recruits Governments at the federal level of ior Support is a wonderful case in point. new faculty on the basis of categorical wealthy nations are "paring down" Recent applications of school-wide PBS identity. Thus, the retirement of the national interests, particularly welfare, inin Oregon, Hawaii and Kansas City are "deaf-ed" professor means recruitment order to position themselves as "lean andshowing that inclusion of special needs among applicants with that specializa- mean" to attract multinational corporate students in general-ed settings gets tion. The universities, state education investment. Within the U.S., the same is special education resources in position to agencies, and professional guilds (i.e. happening at the level of state govern- be of benefit for all kids. Through CEC) work together to determine ment. Kansas, for example, privatized its problem solving in group action plan- requirements for the certification of child welfare system precisely to trim its ning around inclusion, general-ed kids teachers that, in the modern era, have state budget in order to appeal to learn citizenship, democratic practices guaranteed perpetuation and expansion multinational corporate interests seeking and appreciation of diversity. of that human sigmentation. to build distribution sites near the center of the country. The health, educational Finally, TASH members can work to link Now there are signs that all of that is and well-being of the children involved schools, community services and families changing. States are moving toward is rapidly becoming a local issue rather than one that can be addressed at the collapsing certification requirements Continued on page 21 levels of state or federal policy. PAGE 20 t../4 TASH Newsletter, April 2000 SCHOOL-LINKED SERVICES
Reinventing Community in the Age of Globalization Standards Based Education 12. 20 U.S.C.1412(a)(16), (17); 34 C.F.R. Continued from page 20 300.137(a)(2), (b), 34 C.ER.300.138; 34 C.ER. Reform 104.4(b)(1), 104.333(b)(1)(i); 28 C.F.R. Continued from page 5 35.130(b) (1). 13. Sizer, T. (1992), Horace's School: Redesigning the American High School, Boston: Houghton in functional productive partnership Mifflin: All students need to learn different types arrangements. School-linked service Kathleen B. Boundy is the co-director of of skills, including habits of the mind (such as integration arrangements, such as the Center for Law and Education inquisitiveness, diligence, tolerance, collabora- (Boston, Washington, D.C.) where, as an tion, and critical thinking), content area represented by Beacan Schools, Full knowledge (science, social studies, language arts, Service Schools, Community attorney, she represents low-income the arts, etc.), and basic academic skills such as Schools and so on afford opportuni- students, including students with disabili- reading, writing and mathematics. ties to de-fragmentize the categorical ties. This paper is a revision of a paper 14. Because virtually all states have by this time that originally appeared in the November adopted standards and few, if any, have consid- service systems of the past, and to ered appropriate educational goals for students reinvest deployment of resources to 1998 newsletter of the National Transition with the most severe cognitive disabilities, it may benefit people with special needs Network. The author acknowledges the be necessary for States to supplement their where they, not the professionalized support and assistance of her colleagues at standards by adopting a set of standards that CLE, especially Attorney Eileen L. incorporate the widest range of ability service agencies, call the shots. 15. 20 U.S.C. 1412(a)(5)(A), 1414(c)(iv), Ordover; she also acknowledges the (d)(1)(A)(ii)(1),(11), 34 C.F.R.300.347(a)(2), (3), Part II of this article will appear in assistance of Nancy J. Zollers, Ph.D. (7), 300.552(2); 34 C.F.R. 104.4(b)(4), the May issue of the TASH Newslet- However, the views expressed are those of 104.33(a)(b)(1), 104.34(a); 28 C.F.R. the author and do not necessarily reflect 35.130(b)(1)(ii)-(iv), (b)(2), 35.130(d); 28 ter, and will contain some examples U.S.C. 35.130(b)(3). of types of localized partnerships those of CLE, as an entity, or those who 16. 20 U.S.C. 1414(d)(3),(A),(B)(iv), (v), (C), that work for special-needs popula- have generously assisted her in thinking (4), 34 C.F.R. 300.346(a) - (c),(d)(2). tions and describe how these can get through the issues addressed in this 17.See, Title I, 20 U.S.C. 6314(b)(1)(B), (H), article. 6315(c)(1)(A), (B), (D), 6315(c)(2)(B); Goals started. 2000, 20 U.S.C. 5802(a)(1), 5886(c)(1)(C), 6065(b); 20 U.S.C. 1401(8) (B), (C), FOOTNOTES 1412(a)(2)[definition of FAPE]; 20 U.S.C. 1. 20 U.S.C. 1400(c)(4) (1997). 1414(d) [participation in the general curricu- 2. 20 U.S.C. 1401(8), 1412(a)(1). lum]; 20 U.S.C. 1412(a)(5)(A); 34 C.F.R. 3. 20 U.S.C. 1412(a)(5)(A), 104.34(a); 28 C.ER. 35.130(b)(2), 35.130(d) 1414(d)(1)((A)(i)(I), (ii)(I), (iii)(II),(II1), (iv). [participation in the regular education program 4. 20 U.S.C. 1414(d)(1)(A)((iii). and setting]; and the right not to be discrimi- Wayne is Director of the 5. 20 U.S.C. 1414(d)(1)A)(i)(I), (ii)(I),(iii)(1). nated against under section 504 and the ADA [34 University Affiliated Program for 6. 20 U.S.C.1412(a)(14) incorporating by C.F.R. 104.33(a)(b)(1), 34 C.F.R. 104.4(6)(4); 28 the University of Kansas, reference 20 U.S.C.1453(c)(3)(D)(vii), U.S.C. 35.130(b)(1)(ii)-(iv), 35.130(b)(3)[. Lawrence Campus. He is a regarding "State-of-the-art" requirement. 18. 29 U.S.C. 794, 34 C.ER. 104.4(b)(1)(i)-(iii), 104.4(b)(2); 28 C.ER. 35.130(d); 20 U.S.C. Professor in the Department of 7.20 U.S.C. 1400(c)(4), (5)(A)-(E)(i); see also, Back to School on Civil Rights: Advancing the 1412(a)(17), 34 C.ER. 300.138. Special Education, a life-long Federal Commitment to Leave No Child 19. 20 U.S.C. 1414(d)(1)(A), 34 C.F.R. TASH member and former TASH Behind, National Council on Disability, 300.347(a)(5), (7). president. January 2000. 20. Such determination would have to be made in 8. A more detailed discussion of this topic can a valid, reliable manner consistent with testing be found in "Students with Disabilities and the principles. His current research interests are Implementation of Standards-Based Education 21. See Goals 2000, 20 U.S.C. 5886(c)(1)(B)(i), linking schools, community Reform: Legal Issues and Implications," Eileen 6065(a), (b); Title I, 20 U.S.C. 6314(b)(1), services and families in partner- Ordover, Kathleen B. Boundy and Diana C. 6311(b)(3), 6317(c)(1), 6315(b)(1)(B), (c)(2)(B); 20 U.S.C. 1412(a)(16)(B) - (D), ship arrangements; and Positive Pullin, prepared for Committee on Goals 2000 and the Inclusion of Students with Disabilities, 1412(a)(17)(B); 34 C.F.R.300.137, 300.138(a), Behavioral Support as the basis National Research Council, National Academy 300.139. for school-wide discipline. Wayne of Sciences, June 12, 1996. 22. See Title I, 20 U.S.C. 6311(B)(3)(), (I), can be reached at 785-864-4950 9. 29 U.S.C. 794. 6314(b)(1)(H); 20 U.S.C.1412(a)(17)(B), 300.137(b), 300.139; also IEP review and or at [email protected]. 10. 42 U.S.C. 12132. 11. Goals 2000: Educate America Act, 20 reevaluations at 20 U.S.C. 1414(d)(4)(A), 34 U.S.C.5802(a)(1), 5881(15), 5882(a), C.F.R.300.343(c), 300.347(a)(7). 300.350; 34 OOOOOO 5886(c),(n); Title 1, 20 U.S.C. 6301(b)(3), C.ER.104.4(b). 6312(b)(4), 6315(b)(3)(1); 20 U.S.C. 23. 20 U.S.C. 1400(c)(4). 1412(a)(16), 34 C.F.R. 300.137(a)(2); State education reform statutes. Qv**
PAGE 21 JJr TASH Newsletter, April 2000 CENTER ON HUMAN POLICY
Acting on a Vision: Agency Conversion at Katandin Friends, Inc.
11111E_AIAL__Alfill
BY PAM WALKER
Since the mid-1980s, Katandin Before they began the closure of the different strategies and learned many Friends, Inc. (KFI), located in the workshop and day program, the adults lessons about the closure of facilities and town of Millinocket, in rural north they served lived primarily with their the development of individualized central Maine, has transformed its families or in foster homes. The process community supports. Some of these are supports for people with developmental of closing the workshop and day pro- discussed below. disabilities from those that promote gram led KFI to examine other aspects of segregation to those that promote the lives of people they supported. As a Continual decision making based on values community inclusion and membership. result, the agency began to offer different and vision KFI began in 1962 in response to the types of residential supports (e.g., as Having an agency mission and values requests of parents whose children with alternatives to family or foster homes, forthat support inclusion are not enough in developmental disabilities were not those who so desired). Over time, they themselves. In the process of conver- being served in the public schools. In have developed the capacity to provide sion, KFI held every decision, whether the mid-1970s, the agency began offeringintensive residential supports to enable a large or seemingly small, up to the adult vocational services for those who number of people with very significant mission and values. Thus, many deci- were no longer in school. For the first disabilities to move out of institutions sions, both large and seemingly small, 15 years of its existence, the agency and into their own homes. contributed to the conversion at KFI. operated a number of facilities -- a One staff member expressed that she felt segregated preschool and a special This article is part of a series of reports their success was based on being able to purpose school, and later a sheltered designed to document innovative take advantage of these decision points workshop and a day program. daytime and supported living practices. as opportunities for change: "We really It is based on a site visit in March 1998; changed by using opportunistic incre- Beginning in the mid-1980s, the agency it reflects the agency at the time of the mentalism. When we had decisions to embarked on a path toward conversion visit. At that time, the agency provided make, we went in the direction of our from facility-based to inclusive services. supported living services to 22 people, philosophy." Since that time, they have transformed and day services to 14 individuals. the preschool into an integrated pre- The decisions and changes were not easy, school; and, they closed the special STRATEGIES AND LESSONS FROM and agency staff struggled at many purpose school, transferring children AGENCY CONVERSION different times. "When we moved our into regular public schools. KFI closed day program from one building to both the workshop and the day program, Conversion did not happen all at once, another, should we take the soda opting instead to support people in but was a process that spanned several machine? It was important to some community jobs and other meaningful, years (e.g., from the mid-1980s to the people, but we didn't move it because we integrated daytime activities. early 1990s). Over the course of their wanted people to use the community" conversion, the agency used many Continued on page 23
PAGE 22 V TASK Newsletter, April 2000 CE TER ON ECU DI POLICY
Acting on a Vision: Agency facilitate the provision of individualized service decreased, which provided some Conversion at ICFI, community supports. Thus, KFI staff bridge funding for the agency transition. have worked on their own and in Millinocket, Maine collaboration with others to find and Negotiating with the state for more Continued from page 22 create flexibility within the system in flexible hours for daytime supports. many ways, including those described Initially, daytime supports for people briefly below: were all within the 9:00 A.M. to 3:00 Later, in 1989, they made the decision P.M. time frame. Staff at KFI identified not to do subcontract work. This was Obtaining supplemental funding. In the problem as follows: "The state was also a very difficult decision. "It was a order to close the workshop, they were defining daytime services as a day; we heart-wrenching discussion. But we helped initially to begin community requested them to define it in terms of didn't want to be the employer any employment services by a state grant. hours, so we could do things at any longer. We asked, 'what is the value of Later, federal and state grants (e.g., a time." The state agreed to this change. this subcontract work?' It is filling time. federal grant to promote transition from Now supports can be provided anytime What a terrible reason to continue." school to adult services; a state organiza- between 7:00 A.M. and 9:00 P.M. KFI tional change grant) also helped them staff and the people they support now Agency conversion, then, was a result of expand their community supports. have greater flexibility in figuring out a clear vision and many combined individualized daytime options. decisions. They recognized that they Retaining some flexible funds. It is would not be able to implement an ideal sometimes tempting, and sometimes Combining residential habilitation vision that there would be trade-offs necessary, for an agency to trade in its and day habilitation funding. With and compromises involved. In light of state dollars for Medicaid dollars. combined funding, there is no separation this, they advise others in the midst of However, the state dollars generally between day and residential staff.It also agency change to at least recognize and allow a much broader range of supports. makes it easier to provide flexible acknowledge the compromises. As one Thus, KFI has been conscious about daytime supports (e.g., without people staff member put it, "Know when you're keeping a good balance of both Medicaid having to be out of their homes for compromising; but don't start with a and state funds. specific hours every day). compromise." KFI's ability to find this flexibility is, in In the coming years, KFI will be faced part, enhanced by its positive, collabora- with increasing pressures to expand its Through its conversion, KFI tive relationships with others, as de- services in order to get more revenue for aimed to move from services that promoted segregation or scribed below. While they have been the agency. In addition, because they simply community presence, very creative in dealing with fiscal and have a reputation for delivering quality to services that assisted regulatory issues, staff at KFI acknowl- services, increasing numbers of families people to lead rich, meaning- edge that the system still does not and people with disabilities are seeking ful lives in the community. Their experience illustrates provide incentives for the kind of work KFI's services. The challenge for the that such organizational they are doing. Thus, they face the agency will be to continue to hold up transformation is possible. ongoing challenge of struggling against each decision to its values, so they can systems barriers and disincentives. maintain their capacity to be an indi- vidualized, flexible, and responsive The importance of collaboration organization. KFI's collaborative relationships with many individuals and organizations is a Finding and/or working to create flexibility great asset. They have identified people within funding and regulatory systems at the state level who are creative and In this day and age of tight fiscal envi- Obtaining bridge funding for conver- flexible in their use of the Medicaid ronments, it is not easy for any agency tosion. During the process of conversion waiver. In addition, they have cultivated support people with significant disabili- to community services, it is often positive relations with a variety of state- ties in individualized ways in the important for agencies to have some level people, based in part on KFI's community. The approach of KFI has bridge money available (e.g., to help reputation of accomplishing what it been to make plans with people, with a with start-up costs for supports for commits to, and doing so in a quality commitment to figuring out how to people in new settings, etc.). KFI was manner. implement them, rather than letting the able to arrange with the state Bureau of planning be driven by fiscal and regula- Rehabilitation to obtain an equivalent In addition, the connections that KFI tory issues. At the same time, increased fee-for-services amount for people they staff have forged with other disability flexibility within the system can greatly supported, even if the specific units of Continued on page 24 PAGE 23 TASH Newsletter,April 2000 CENTER ON HUMAN POLICY
Acting on a Vision: Agency from others who had also closed facili- them yet. Thus, a continuing challenge Conversion at KFI, ties, as well as learning from their own for the agency is to expand their capacity Millinocket, Maine actions and experiences. While staff at to find jobs for others who are seeking KF1 have learned a tremendous amount them, in ways such as creating additional Continued from page 23 over the last several years, a strength of job development positions, and/or the organization is that they do not encouraging all staff to see job develop- consider themselves as having all the ment as part of their role. services agencies enhance the support answers now, but see themselves as that is provided to people. For example, continually learning about the people Keeping a Focus on Relationships their close collaboration with people in they support and how best to assist It is key that a focus on relationships the mental health field is critical to their them. pervades all of the work of KF1. This support of people with developmental includes relationships of many types: disability and mental health labels. Looking at People's Lives as a Whole The initial primary focus on helping Relationships between staff and the Recognition that space defines what you do. people work in the community led, over people they support. The relationship thus, the determination to proceed with time, to a broader focus on looking at between staff and the people they closing the facility, despite their own uncer- other aspects of people's lives, including support is seen as being critical to the tainties and lack of answers for everything. supported living services: support. Overall, KFI staff appear to Administrators at KFI were aware that if have close, committed, trusting relation- they maintained special, separate places, "After getting out of the sheltered workshop ships with those they support. At times they would end up using them. They business, we were still running the day center. when there is not a good match, changes realized that they could not effectively But, we said, 'why do people have to come are made in order to find a better match. promote inclusion with a dual system of here? Because they don't live in their own KFI staff recognize the challenge of not services. Thus, they made a commit- homes.' So, we began working to help people becoming the sole safety net or social ment to follow a path toward complete have their own homes, and provide support to network for a given individual. They are facility closure. them out of their homes, rather than a concerned both about some people that facility." they support becoming overreliant on Doing this was not without some risk. staff, and about some staff having trouble Some vocal people in the community KFI also broadened its supports to letting go of people. This does not were upset by the closure of the facilities.encompass integrated daytime activities prevent them from encouraging staff to Staff also worried about their own jobs, and involvements, in addition to employ-build close, caring relationships. How- wondering if closure of the facilities ment. They recognized that people who ever, it reminds them of the need to would lead to elimination of their jobs were not working sometimes sat around continually work to expand people's altogether. In addition, when they made all day with nothing meaningful to do, networks beyond staff, as well. the commitment to closure, they didn't either at home or in segregated day know all the answers as to how it was programs. Additionally, those who Staff relationships with families. KFI going to be accomplished. However, worked most often worked part time, staff strive to help people maintain along the way they spent time learning and again spent much of the rest of the relationships with their families, and day in isolation or have helped some people reconnect with boredom. family members who had been out of touch for many years. In addition, KFI At the same time, this staff feel it is important that they try to Overall, KFI has helped has focus on a wide variety of have positive, working relationships with helped many of the people that they daytime involvements families. While they have done this in support to develop diverse commu- does not diminish the many instances, they also feel, at times, nity connections and relationships. importance that KFI that they could do more in terms of At the same time, as in many other places on helping most working with families and involving agencies that give priority to this, people find paid jobs. them in planning and other aspects of some of the people they support are Agency staff have been people's lives. still relatively isolated socially. successful at finding paid Thus, a challenge is the ongoing work for many of the A wide variety of relationships for work of relationship-building and people they support. people who are supported by KFI. community-building. However, there are also a Some of the people that KFI supports number of people who had long-term, close friendships with they support who would like jobs but do not have Continued on page 31
PAGE 24 58 TAMNewsletter,April 2000 TRI-STATE CONSORTIUM ON POSITIVE BEHAVIOR SUPPORT
(EffectivelyEducating (. Students with Problem Behavior: A Summary of Outreach by the Tri-State Consortium on Positive Behavior Support
BY TIM KNOSTER, DON KINCAID, JENNIFER McFARLAND, CAROL SCHALL, ANNE MALATCHI, PATRICK SHANNON, JUDY HAZELGROVE, JEANNINE BRINKLEY, and JOSH HARROWER
Effectively educating students who families, and others across school, home, Outreach Efforts to Date present behavioral challenges has and community settings. The Consor- long been a problem for schools. tium represents a three-state partnership The Consortium has engaged over these In fact, problem behavior has been cited reflective of a natural evolution of past three years in a number of outreach as one of the most common reasons as to collaborative endeavors supported activities within the three state region. why students with disabilities are through the Rehabilitation Research and Additionally, collaboration between the removed from typical home, school, and Training Center (RRTC) on Positive project and other kindred endeavors in work settings. To address this challenge, Behavioral Support, which is funded by other regions of the United States has educational teams in Pennsylvania, the National Institute on Disability and occurred. The development and imple- Virginia, and West Virginia have been Rehabilitation Research, U.S. Depart- mentation of behavior support plans for increasingly participating in an effective ment of Education. Consistent with the individual students has served as the problem solving approach referred to as RRTC, the Consortium has employed the focal point of outreach. However, "positive behavior support" or "positive following central tenant and operating energies have also been directed towards approaches." The Tri-State Consortium assumptions from the inception of its outreach on building based approaches on Positive Behavior Support has served outreach endeavors which began in the that are compatible with individual as a catalyst to this outreach. Fall of 1996: student systems of behavior support. It is also noteworthy that outreach by the The Tri-State Consortium (simply referred to as the Consortium) is a Central Tenant Problem behavior results from unmet needs federally funded project operated by the Pennsylvania Department of Education Four Operating 1) Problem behavior is context related through its Instructional Support System Assumptions 2) Problem behavior serves a function of Pennsylvania. The Consortium is a for the student multi-state Outreach Project funded 3) Effective interventions are based on through the U.S. Department of Educa- a thorough understanding of the student, his or her social contexts, tion Office of Special Education Pro- and the function of the problem grams. behavior 4) Support must be grounded in person- As was highlighted in the November centered values that respect the 1999 Edition of the TASH Newsletter, dignity, preferences, and goals of positive behavior support in school each student along with his or her programs represents an empirically- family. based, problem solving approach that matches supportive strategies to the needs of individual students, their r. 9 Continued on page 26 ; PAGE 25 TASH Newsletter, April 2000 TRI-STATE CONSORTIUM ON POSITIVE BEHAVIOR SUPPORT
Effectively Educating Conducting Functional Behavioral process of positive behavior support have Students with Problem Assessments served as cornerstones in our project's Designing Multi-component Individu- activities in evaluating the impact of Behavior alized Support Plans outreach efforts. Continued from page 25 Implementing, Monitoring, and Adapting Support Plans Evaluating Impact of Outreach Evaluating Impact of Positive Behavior Consortium has occurred with teams Support Habilitative behavior change has served educating students that reflect a broad Imbedding PBS within and Across as the focal point of outreach through spectrum of diversity (inclusive, but not Systems the Consortium. However, over the exclusive of students with disabilities). course of the past few years, we have The following is a snapshot of outreach In addition to implementing this curricu-become increasingly aware that to activities to date by the Consortium: lum, the Consortium has also studied thecomprehensively assess impact requires process of supporting attention to a wider range of factors than school-based teams across isolated behavior change. We have come Outreach by the Tri-State Consortium, a variety of settings (i.e., to refer to this wider range of factors as 1996-1999 elementary, middle, and "quality of life" or "ecological" out- InformationDissemination: 16,936 recipients high schools in rural, sub-comes. In light of this, the Consortium urban, and urban commu-has focused energy on identifying and Training: 15,128 participants nities). As a result of our measuring a set of broader outcomes endeavors, we have come with students, families, and teams that Technical Assistance: 1,291 recipients to realize that it is include emotional, material, and physical essential to understand Student Centered Teams:Over 400 across schools well being; interpersonal relationships; in the Consortium the needs of support team personal growth and development, self- members and the de- determination; social inclusion, and Additional Activities: Developed user friendly mands placed upon them exercising individual civil rights and training materials; within their roles and responsibilities. Developed a synthesized settings in order to training curriculum; efficiently support teams Our efforts in this regard represented an Provided policy reviews and to comprehensively guidance extension of work initiated in West design and implement Virginia by the Life Quilters Project in individualized support 1989. Through collaboration, the plans. Focuson both the content and Consortium further refined those initial Core Components of Training/Technical efforts in a manner that cross references Assistance Curriculum assessment procedures and data sources in a more time efficient manner. As a Constructive behavior change e One of the initial steps taken by the result, the Consortium's current ap- Consortium was to reach agreement on a still serves as the foundation on proach to measuring impact addresses synthesized training curriculum. This which positive behavior support is decreases in problem behavior, increases served as the project's initial activity in evaluated. However, it is impor- in alternative skills, positive side effects, 1996. The process of generating this tant to realize that there are improvements in quality of life, team member satisfaction, and improvements curriculum was relatively smooth as a times when an individual student's result of the commonly shared training in general health and well being. To and support provided to each of the behavior does not immediately assess impact across these areas, we have project's three states in previous years change. but his or her environ- employed a variety of methods including through the RRTC. The Consortium's ment is positively altered by the; interviews with teachers, parents, other curricula is consistent with the RRTC support activities of the student's: relevant service providers; informal reports such as communication logs and and is comprised of seven core compo- team. In other words. a child's nents: teacher notes; rating scales; natural behavior may remain the same. documents such as school incident Team Forming and Establishing Goals but the child's teachers and/or reports, report cards, medical records; for Intervention parents have learned methods to and direct observation. The following Collaborative Approaches to Problem more efficiently de-escalate crisis : assessment approaches are currently being used by the Consortium. Solving situations. Continued on page 27 PAGE 26 £0 TASK Newsletter, April 2000 TRI-STATE CONSORTIUM ON POSITIVE BEHAVIOR SUPPORT
Effectively Educating Students with Problem Behavior Alternative Skills After PBS Continued from page 26 Frequency of Use Appropriateness of Use Independence of Use More 392 394 361 No Change 28 49 Behavior Change Less 5 23 6 Constructive behavior change still serves as the foundation on which positive behavior support is evaluated. Efficiency of Support Strategies to Teach Alternative Skills via PBS However, it is important to realize that there are times when an individual How Well How Comfortable How Consistent How Much It Worked To Implement Was Interference student's behavior does not immedi- Implementation With ately change, but their environment is Routines positively altered by the support I. Not at All 6 2 I 208 2. 27 10 27 100 activities of the student's team. In other 3. Somewhat 84 84 84 73 words, occasionally a child's behavior 4. 175 108 135 33 may remain the same, but the child's 5. A Great Deal 144 267 225 19 teachers and/or parents have learned methods to more efficiently deescalate crisis situations (e.g. the support team may be able to assist parents in commu- of assessing behavioral outcomes, social validity, including evaluation of nity integration activities with their childintervention strategies are further team members' feelings and perspectives despite problem behavior). evaluated by team members to determine about the effectiveness of interventions. whether the supportive strategies The Behavior Outcomes Survey assesses worked well, whether the team was The following depicts data generated whether behavior problems occurred comfortable with the strategies, whether through the Behavioral Outcomes Survey more or less often, were more or less the strategies were used consistently, and from in excess of five hundred team severe, or occurred for longer or shorter whether the strategies interfered with members from the Consortium's initial duration following implementation of an typical daily routines. We have found thatfifty student-centered teams. individual support plan. Student these lines of inquiry help to cross acquisition and use of socially acceptable reference responses with actual behavior Quality of Life Survey/Interview alternative skills are also assessed in change as measured through direct terms of their frequency, appropriateness, observation. Further, this information This instrument has 22 items addressing and independence of use. In the context begins to delve into important issues of various quality of life domains including: changes in the child's relationship with family and peers; changes in the child's participation in school and community Problem Behavior After PBS activities; changes in the child's ability to Occurrence Severity Duration express personal preferences; changes in More/Longer 31 14 16 the child's overall quality of life includ- No Change 28 40 32 ing general health and well-being; and Less/Shorter 458 445 424 satisfaction with supports provided to the child and team. Items are scored by team members using a Likert Type Scale Efficiency of Support Strategies to Reduce Problem Behavior via PBS of one through five (1 "much worse," 3 How Well How Comfortable How Consistent How Much "somewhat better," 5 "much better"). It Worked To Implement Was Interference Implementation With Routines Data from our initial fifty student- I. Not At All 6 2 1 235 centered teams following application of 2. 33 11 33 109 PBS are depicted below. Data continues 3. Somewhat 94 94 94 77 4. 197 135 150 41 to be collected from newly established 5. A Great Deal 170 296 253 20 teams prospectively.
Continued on page 28 PAGE 27 GI TASH Newsletter, April 2000 TRI-STATE CONSORTIUM ON POSITIVE BEHAVIOR SUPPORT
Effectively Educating Students with Problem Behavior Continued from page 27
Summary Quality of Life Survey Sample Items Mean Median The previously highlighted information 1. The child's relationships with family members represents a brief review of outreach (i.e., parents, siblings, etc.) are... 4.12 4 efforts by the Consortium. While not 2. The relationships with peers the child has now are... 4.25 4 3. The child's participation in school and/or community activities comprehensive, this synopsis serves as of their choice is... 3.94 4 an efficient description of the Consor- 4. The child's ability to express personal preferences is...3.64 4 tium and its impact in the three state 5. The relationships the child has with members of the community region. Of particular interest is the (i.e., store clerks, neighbors, waitresses, etc.) are... 4.42 5 6. The child's relationship with teachers/school personnel Consortium's endeavors that reflect is... 3.98 4 emerging and expansive trends in 7. The child's access to activities that are personally evaluating the impact of support. Parties stimulating is... 3.78 4 interested in obtaining additional 8. The child's self-confidence is... 3.79 4 information and materials are encour- 9. As a result of PBS, I feel the child's quality of life is... 4.47 5 10. The child's general health and well being is... 3.96 4 aged to check out the Consortium's Web- Note: Total Respondents n = 517 site at www.positiveapproaches.org .
Consumer Satisfaction Survey Consumer Satisfaction Survey Sample Items MeanMedian The Satisfaction Survey assesses 1. The team is able to agree on strategies for the focus child. 4.35 4 2. The team works together to address the focus child's needs. 4.43 4 elements of support and team function- 3. The team is able to collectively problem solve. 4.31 4 ing. Open-ended questions in this 4. The agencies that agreed to work with the team to meet the focus instrument help to understand what child's needs continue to be involved. 4.10 4 team members liked most and least 5. The interactions between agencies, support providers, and family about the process. Consumer satisfac- members is productive. 3.97 4 6. My vision for a positive future for this child has improved. 4.47 5 tion is important in that often the 7. The number of environmental changes that support the child initial focus of the Consortium's at school has increased. 4.50 5 training/consultation has not exclu- Note: Total respondents n = 517 sively focused on individual students. Rather, outreach has typically also prioritized facilitating changes in per- The Consortium anticipates spective and subsequent actions of team further dissemination of information members, supportive relationships, and relevant to outreach with more in depth the team's ability to effectively and emphasis on evaluation of impact in a efficiently solve problems. future TASH newsletter.
Data from the Consortium's initial fifty About the Authors teams is depicted in the following table to illustrate the range of items asked and The authors of this report are collabora- typical responses. A Likert Type Scale tors in the Tri-State Consortium on was also used in the Satisfaction Survey Positive Behavior Support. Please address (i.e., 1-"strongly disagree" to 5-"strongly all inquiries to Dr. Tim Knoster at 570- agree"). 523 -1155 ext. 2213 or [email protected] 62 PAGE 28 TAW Newsletter, April 2000 EMMGILYW1111CDM 17063M Please Note: Registration is limited to 1200 participants. Instructions for filling out this form: TASH Office Use Only 1. Fill out one form for each person attending 2. Fill out all information requested on the form Org 3. Mail or fax form by July 21, 2000 to: Mail: First International Self-Determination & Individualized Cust Funding Conference do TASH, 29 W. Susquehanna Avenue, Suite 210, Reg Baltimore MD 21204 Fax: TASH, (410) 828-6706 Rec
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64 CENTER2431ON HUMAN POLICY
Acting on a Vision: Agency Relationships between staff. A tion that now enables KFI to assist Conversion at KFI, strength of KFI is the emphasis that is people not only with community Millinocket, Maine placed on development of positive presence, but to have meaningful relationships between staff. As a result, community involvements and connec- Continued from page 24 staff seem to feel supported by and tions, which are keys to true community invested in the agency. Many have made participation and membership. long-term commitments to the agency, as well as to the people they support.
The lessons of [KFI's] experience Overall, KFI has helped many of the The preparation of this article was supported in part by the National suggest that key components of this people they support to develop diverse Resource Center on Supported Living process include a value base that community connections and relation- and Choice, Center on Human Policy, plays a strong role in guiding ships. At the same time, as in many School of Education, Syracuse decisions and actions, persistence, other agencies that give priority to this, University, through the U.S. Depart- creativity, a focus on relationships, some of the people they support are still ment of Education, Office of Special and collaboration. All of these relatively isolated socially. Thus, a Education and Rehabilitative Services, challenge is the ongoing work of National Institute on Disability and components, combined, have relationship-building and community- Rehabilitation Research (NIDRR), facilitated an organization transfor- building. through Contract No. H133A990001. mation that now enables KFI to Members of the Center are encouraged assist people not only with commu- to express their opinions; however, Commitment to Continual Learning these do not necessarily represent the nity presence, but to have meaning- The agency has continuously evolved in official position of NIDRR and no ful community involvements and its learning about how best to support endorsement should be inferred. The connections, which are keys to true people in the community Center on Human Policy subcontracts community participation and with TASH for space in this newsletter. membership. people in the community. For instance, initially, upon moving people out of the workshops, they used work crews and enclaves. However, they found these did others with disabilities in the workshops.not adequately match their vision of In the field of human services, some- promoting true integration, and they times this is used as part of the rationale began developing more individualized to keep workshops and other facilities jobs and supports. In addition, staff did open. KFI staff felt that this was not a not consider the closure of all of the Want to get reason to keep the workshops open. facilities as an endpoint, but rather as a However, they do feel that it is important turning point enabling them to focus all double to value and honor these relationships, of their energy on ongoing learning exposure and support people to maintain them about the people they support and how for your through visits, calls, small gatherings, best to support them in community life. and so forth. At the same time, KFI staff advertising feel it is equally important to assist Through its conversion, KFI aimed to dollars? people to have opportunities to get to move from services that promoted know and spend time with community segregation or simply community Consider placing an ad in the members that do not have disabilities. presence, to services that assisted people TASH Newsletter. In addition to to lead rich, meaningful lives in the your printed advertisement, we Thus, a significant amount of staff time community. Their experience illustrates that such organizational transformation will place your ad on TASH's and energy is focused on thinking of web site at no additional cost to strategies to promote diverse community is possible. The lessons of their experi- connections and social networks. KFI ence suggest that key components of this you! staff themselves have forged positive process include a value base that plays a relationships with many community strong role in guiding decisions and Look for details about TASH's groups, organizations, and individuals, actions, persistence, creativity, a focus on new Online Classifieds in and this serves as a positive link to the relationships, and collaboration. All of upcoming issues of the TASH community for some of the people they these components, combined, have Newsletter. support. facilitated an organization transfoArnA- U PAGE 31 TASH Newsletter, April 2000 PERSPECTIVES ON KELSO
The Kelso Debate: Council; her term expired a few days unpreparedness for their life with him as after she'd dumped her son at the a son, the severity of the disability. Viewpoints and hospital. Associated Press Writer MichaelIn any other than the disability world, Rubinkam reported Council chairman this would be viewed as blaming the Perspectives Paul O'Hanlon as saying she'd "expressedvictim. frustration in dealing with agencies that Who will speak sent nurses to her home to care for the On New Year's Day I tried a little experi- for Steven Kelso? boy" ment. I was out for brunch with a group By Mary Johnson of gay men (Brunch, for gay men, is a The Ridgaway Philips home health town hall meeting.)I knew that one of The story broke agency told Rubinkam that it "provided the men had been placed into a private into the nursing care for Steven for 10 hours a psychiatric institution when he was 12 national news the day." "And the Kelsos hired nurses for an or 13 years old so that he could be cared week between additional eight to 10 hours a day," wrote for by professionals. The professionals Christmas and New Rubinkam. would be able to fix him. He would learn Year's. A rich Pennsyl- to love differently. vania couple, Richard They talked off the record. They recited and Dawn Kelso, had been arrested and stories they'd heard. The Kelsos dumped I knew his story from years ago, and charged with child abandonment after Steven at the Wilmington hospital every during brunch I brought it up. He, dumping their 10-year-old, Steven, at the Christmas, they said. This year the having a lot of distance from this now, Wilmington, Delaware's Alfred I. du Ponthospital had said they didn't have room took my opening and told the story Hospital for Children. for him; the Kelsos pulled their stunt andhimself, replete with descriptions of his dropped him anyway. Dawn Kelso was incredible sense of abandonment and The Dec. 28 Philadelphia Inquirer rich, said those who knew her as a rejection by his parents, with whom he reported only that Dawn Kelso had member of the DD Council. She had has never really reconciled. "wheeled her son into the Alfred I. du little grasp of the problems average Pont Hospital for Children around 10:45 disabled people encountered with the After he was done I used the language I'd a.m. Sunday, then carried in several system. heard being used to excuse the Kelsos. I boxes filled with his possessions, left said, "Well, we need to understand them in the lobby, and fled." The child Rumor. Innuendo. No one would speak where the parents were coming from. was "multiply handicapped." on the record. No one wanted their nameThey might have been suffering from Dawn Kelso was being held at the associated with what they thought about some kind of shock to the discovery that Dolores J. Baylor Women's Correctional Dawn Kelso. their son was gay. They might have felt Institution in New Castle after failing to that they couldn't be expected to raise post $2,300 cash bail. Richard Kelso was "She had piles of services," one source him, that his care would be better done being held at the Gander Hill Prison in told us. "This was a personal crisis by professionals.. ." Wilmington after failing to post $3,000 between her and her husband not a cash bail, reported the Inquirer. `systems' issue." I didn't get any further. There was an eruption at the table. People were furious Soon enough, news reports took on a "Your story should be about the danger that I would even suggest that abandon- different flavor. A spokesperson for of misdirected public debate." ment was an appropriate response to the Greater Philadelphia First, "a civic discovery that your child was gay. People association of business chief executives Mary Johnson is the editor of Ragged Edge shrieked I'm not exaggerating that from 33 of the region's larger corpora- magazine. a lot of street kids are abandoned gay tions," called the Kelso affair "tragic." kids, abandoned by parents who "couldn't cope." "The only thing I can think of is that it is very difficult to care for a severely "I am constantly astonished that Yes, I expected this reaction. What I was disabled child, and be the president and everybody wants to be seen as under- really interested in, while I was being CEO of a major company," said the standing and compassionate chastised, was the look of absolute peace spokesperson. toward the parents." Dave Hingsburger that came over the man whose story prompted this discussion. He was Dawn Kelso, 45, had been appointed by By Dave Hingsburger people offer incredibly positive basking in the understanding and Pennsylvania Gov. Tom Ridge in 1997 to 1 hypotheses for why the Kelsos support of his friends, his community. serve on the 20-member Pennsylvania abandoned their 10-year-old son: lack of Developmental Disabilities Planning support, their own emotional state, their Continued on page 33
PAGE 32 66 TAM Newsletter, April 2000 PERSPECTIVES ON KELSO
Sonoma Developmental Center, it most By Dick Sobsey Th® Us° Dobaier, likely did not feel any different to him parenthood is a big responsibility. Vin-niats than Steven's "abandonment" did to him. Raising any child requires a lot of Most likely, it was worse for Bill because time and a lot of money and a lot of Pogspoctives he got nowhere near the quality of care other personal resources. Some kids that Steven received. require more than others and every child Continued from page 32 will require more than a parent feels that Yet, no one accused us of abandoning he or she has to give at some point. How must it feel to Bill, because we made arrangements be a 10-year-old beforehand and remained involved. Don't you think I have thought a lot about how Children do not always turn out to be abandoned by your what their parents want. Some kids parents? Bill felt when I walked out of the Oaks Unit that June morning ten years turn out to be boys when their parents want girls. Some kids grow up to be ago and left Bill behind? What have I But there's another homosexuals when their parents were done since? I have worked hard to be question we need to hoping they would be heterosexual. ask ourselves: How Bill's dad. I have worked hard to help prevent other families being in the same Some grow up to be struggling artists must it feel to be when their parents were hoping that situation. I supported and worked for abandoned by your they would be stockbrokers or plastic community? foster family options. 1 worked for legislation that would include "wrap- surgeons. The children of staunch conservatives sometimes grow up to be around" services as an option to help Dave Hingsburger is involved with the self- liberals. Some kids have disabilities and keep families together. I worked for advocacy movement for people who have need more care, even though their legislation that helped families be developmental disabilities. The author of 21 parents did not plan things that way. books, his writing appears regularly in involved in their child's life when the child was placed out-of-home, by disability rights magazines. Being a parent is not like purchasing a trying to make the regional center BMW. If you are dissatisfied, you cannot develop options close by. 000000 just park your kid back at the dealership. I imagine the grief of all parents who place their children out of home. I am As the parent of a child with a severe The following viewpoints were disability, I have great sympathy with shared via TASH's Update E-Mail tormented by what all children think who that happens to. Disabled or non- the demands that parenting can put on Ustserve, a new online discussion parents. I even believe that sometimes it disabled. group. See page 12 of this newslet- can be particularly tough to be a family ter for information on how to join. that has lots of apparent resources The chances are greater that Steven will grow up to think like Mike and the because everyone assumes you can Electric Edge thinks if this family doesn't handle things. By Bill Coffelt receive the help it needs to be whole. If But child abondonment is simply child ifcertainly have asked why I feel so Steven doesn't get to grow up with his family. That most likely won't happen if abandonment and it is no different for strongly about this issue. It would parents of kids with disabilities. certainly be easy to put it behind me and people continue to reflect on what move on. I really don't desire to risk happened, rather than how to fix it. We alienating so many whose respect, trust, need to be non-judgemental. We need to do whatever it takes. Those are the two and friendship I value so much. Obvi- A TIME TO SPEAK OUT ON THE ously, when I accuse others of bringing basic principals of the wrap-around philosophy. KIEILSO TRAGEDY their baggage and life experience to this By Steven J. Taylor issue, I am guilty of doing the same. I feel the best way to prevent Steven from being a Mike or Electric Edge is to move When Dawn and Richard Kelso left I still believe this is a family support, not their 10-year-old son, Steven, at a disability issue. I believe it is about a ten away from the perspective of those who bring their life experience to the discus- hospital the day after Christmas along year old child and his family. What with a note that they could not care for happened to Steven happens to far too sion and focus on solving the problem. Then maybe when Steven is an adult, his him anymore, they did something that is many kids, whether they have a disabil- wrong, terribly wrong. ity or not. Or whether they were aban- perspective will be different. doned or not. When I placed Bill at 000000 6 7 Continued on page 34 PAGE 33 TAR. Newsletter, April 2000 PEROPMVITUIZ
to look at the situation from Steven's disability rights activists, family mem- 'n® 1-ciso @bt© perspective? bers, and their allies must work together Virrrtioids for change. In a recent series of articles in the Ragged Raspodins EDGE, several writers reflected on what We recognize that human beings, by Steven, as a person with a disability, their nature, are imperfect and they make Continued from page 33 might be feeling. Like Mouth, the Ragged mistakes, some of which have tragic EDGE is a magazine that publishes consequences for other human beings. Any serious discus- articles that are often provocative and To those who make mistakes, we should sion of the Kelsos controversial. Articles in Mouth and try to be magnanimous, at least until we must begin with an Ragged EDGE force me to think, even know all of the facts. But we must never acknowledgement when they create discomfort. Mouth and be afraid to condemn actions that are that what they did is Ragged EDGE are in-your-face from a indefensible. wrong. It is not disability rights perspective. That is why sufficient to state, "I I read them; that is why I respect them. What the Kelsos did is wrong. do not condone what they did, but...," Responses to the Ragged EDGE articles-- Steven J. Taylor, Ph.D. is Director of the quickly switching the ranging from condemnation of the Center on Human Policy. His e-mail address subject to the short- editors of the EDGE and Mouth to is [email protected]. To obtain a age of home nurses or the inadequacy of amateur psychoanalysis of the leaders of copy of "A Statement in Support of Families home care supports for families of the disability rights movementfrom and their Children", contact the National children with severe disabilities. some pro-inclusion parents would have Resource Center on Supported Living and shocked me had I not heard these Choice, Center on Human Policy, 805 S. For the national media, the Kelsos' reactions before. Internet listserves have Crouse Ave., Syracuse University, Syracuse actions and the subsequent criminal been abuzz about the Kelso tragedy. For NY 13244-2280. The National Resource investigation contained elements bound suggesting that Dawn and Richard Kelso Center is supported by the National Institute to capture the public's attention: a father might have committed a wrongful deed, on Disability and Rehabilitation Research who is the chief executive officer of a people have been attacked on the (NIDRR), Office of Special Education and Fortune 500 company, a mother who was Internet as being insensitive, judgmental, Rehabilitative Services, U.S. Department of a respected advocate and member of the uncaring, out-of-touch, and cruel. Education through Contract No. Pennsylvania Developmental Disabilities H133A990001. Members of the Center are Planning Council, and a child who The Center on Human Policy has long encouraged to express their opinions; however, represents some people's worst night- supported the central role of families in these do not necessarily represent the official mare -- a disabled child, a cerebral palsy the lives of their children. We are position of NIDRR and no endorsement should child, a medically involved child, a committed to families. Yet parents are be inferred. burden. Although it is difficult to not always right. accept the claim that wealthy parents 0 0 0 0 0 0 could not obtain adequate home care What the Kelsos did is wrong. All for their son, some parent advocates human beings are inherently valuable; allEarly MorEnimig Musimigs oii Trecedoran were eager to grant media interviews children are inherently valuable. No and Love testifying to the hardships families face human being, no child should ever By Susan Yuan in keeping their sons and daughters experience what Steven Kelso did. with disabilities at home. Predictably, Come thoughts on the Kelsos and the Polly Spare of Voice of the Retarded It is not the Center on Human Policy's outrage that has followed (VOR) put her own "spin" on the Kelso place to pass judgment on the moral family tragedy: see, this is what happens character, or souls, of Dawn and Richard This one has been too easy to cast in when you close off the institutional Kelso. We condemn the actions. black and white 20 hours a day of option and push families to the "break- nursing care, their comfortable economic ing point" by depriving them of To condemn the actions is not to say that status but we're missing so many of "choice." home care, in-home nursing, or personal the nuances and grey areas of life when assistance for either adults with disabili- we generalize this anger between families So Steven Kelso became the Elian ties or families is adequate. To the and people with disabilities. Freud Gonzalez of our field -- a symbol in contrary, we know that services, sup- identified the most powerful motivators which one group used him to present ports, and accommodations are woefully one position and another group used inadequate in practically every state and him to present another. Who would try community. This is why we believe that Continued on page 35 PAGE 34 68 TASK Newsletter, April 2000 IPEROPEgTINIM ©IM KENO@
4'1 have told him over and over that if he be there for each other. We're all we've Vb Th@ :COs® Doha wants me to do something adventurous got. M7-aoiats with him, all he has to do is tell me ahead of time, and I will arrange for Susan Yuan is a parent and chapter represen- l'ogsp©ctivos respite. But somehow, the very act tative, TASH-New England. of having to tell me ahead of time calls Continued from page 34 up for him all the resentment at the loss 000000 of spontaneity and freedom. I try to understand it and make arrangements on By Denise Gould as Work and Love; but my own and then offer him the time I think in individualis- but it still is never the same as being able rarely heard something put so well tic, American society, to just decide to pick up and go do IL've(as Susan Yuan's Regarding Early the most powerful, something because the day is beautiful! Morning Musings on Freedom and often warring forces Love). I am by nature a very biased, are Freedom and Love. On the one hand, parents whose commit-bigoted, judgmental woman. People are ment doesn't win out in the balance forever telling me how lucky David (who Freedom was the most between love and freedom are con- has many disabilities) is to be my son important of these for demned for the hardness of their hearts; and nothing, absolutely nothing, could me as I was growing on the other hand, parents who continue be further from the truth. He has tried up.I terrified my to provide ongoing care once their and sometimes succeeded and some- parents by wandering off alone in the children have become adults are blamed times not to teach me that we all have mountains or the desert for hours, for stifling the freedom of their sons and a right to who we are and the choices we starting from as young as three years daughters. In the course of Andreas' 27 make. old. years of life, he has been cared for by easily more than a thousand paid We live with the implications and results How little of this freedom is available to caregivers, at school, at home, in the of those choices.It is not my place or Andreas, my son with disabilities. Only community. He has been physically anyone else's to presume to judge the twice in his life did he manage to escape abused, that I found out about, 8 times. choices or the right that came with our surveillance once at night, when How many times where no signs making them. Life is a journey of living. we found him, an hour later, in the showed? And how many instances of backyard of a neighbor, communing neglect that left no signs but boredom As Susan has so eloquently put it "...safe with the rabbits in their cage, and once and loss of expectations and hope? can simply be a result of losing hope (or at a vacation cabin, when we found him maybe dreams and vision)." Too often in a corral we had visited that day, right Still, statistically, among more than a instead of recognizing that we all need under the feet of the horses, happy thousand caregivers, that's not a bad the support and understanding of those and unharmed. For him, we try to record. Yet, if these things could happen around us as we "live life," it is easier to structure "choices," but he never has when he was living at home, with parentsjudge. I can't tell you how grateful I am that simple unrestrained, unstructured who bathe him and see his body every that David, whose very being is simply a spontaneity we so value in our lives. day, and who understand his communi- miracle, has given me in the freedom I Now, as he is older, he seems to have cation, what could happen if he lived feel when I am not engaged in the reconciled himself to this. He is "safer" away from us, among people who might business of judgment and bias. than when he was little but I wonder care, but not that much? how much of this is the loss of hope. By the way, I have a long way to go and a Parents are not saints and heroes any lot more lessons to learn, but I have Parents who commit to loving and more than people with disabilities. every faith in my teacher. Thanks, caring for their children with disabilities We are human beings trying to balance Susan, for touching my heart. also give up this spontaneity. It has all those internal and external forces in been very hard for Andreas' stepfather. our lives. Sometimes we manage it well; He married very young the first time, sometime we screw up badly, for our- going from his mother's house to his selves and for those we should care wife's. He committed to loving and about. At those times, of course we need raising his own children, and then, at to think first, and most, of the people a the end of his marriage, had a brief who got hurt but save a little compas- interlude of the kind of freedom that sion for the people who screwed up and comes from being responsible for no in their hearts, have to know that. Let's one but himself. Then he married us.I 6E PAGE 35 TASK Newsletter, April 2000 TASHGLIJMIMUUEI2
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board Kathy Boundy diversity and quality of life for children and adults with disabilities. Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Liz Healey, President members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President Jay Klein torial judgement in selection of materials. Donna Gilles, Chair of the Executive Committee Tim Knoster All contributors and advertisers are asked to abide by the TASH policy on the Liz Obermayer, Secretary Debra Kunz use of people-first language that emphasizes the humanity of people with dis- Joe Wykowski, Treasurer Ming-Gon John Lian abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Jorge Pineda individuals" refer to characteristics of individuals, not to individuals themselves. Patrick Schwarz Terms such as "people with mental retardation," "children with autism," and "in- Jacki Anderson dividuals who have disabilities" should be used. The appearance of an advertise- Michael Auberger Jacqueline Thousand ment for a product or service does not imply TASH endorsement. Linda Bambara
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APRIL 2000 PRINTED IN THE U.S.A. I L
IL 11\1 L
I 1 I Embracing Sexuality ASP
INSIDE: Sexuality and Teens with Developmental Disabilities, Thoughts About Sexual Orientation, Supporting Friendships, and Individuals with Significant Disabilities and Consent to Sexual Activity L12M7 X3000
TABLE CONTENTS
From the Executive Director Page 4 Embracing the Sexuality of People with la Tom Disabilities ?age 5 Sexuality and Teens with Developmental Disabilities Page 8 ,Eca fRtamd, Supporting Friendships Page 15 TASH 2000 Conference Awards Application Page 12 School-linked Services:Reinventing t© VcDtia? Community in the Age of Globalization Page 19 Thoughts About Sexual The National Mail Voter Registration Form is the one docu- Orientation Page 22 ment that allows you to register to vote from anywhere in the Excerpts from Anne Donnellan's 1999 United States. You can obtain the voter registration form Conference Keynote Remarks Page 25 Individuals with Significant Disabilities and from the Federal Elections Commission by going to http:// Consent to Sexual Activity Page 33 www.fec.gov/votregis/vr.htm. You will need Adobe Acrobat Reader to view and print the forms. You may also obtain a copy by calling TASH at 410-828-8274 x104 or by sending an e-mail to
Whom Do I Contact?? GIZOOODC17 04L14130;1131M4 For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] fAsTI1SFI For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 - Stretching the boundaries of what is possible; TASH, Ext. 103, e-mail:[email protected] Building communities in which no one is For questions about the 2000 Annual TASH Conference, call: Kelly Nelson, segregated and everyone belongs; Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] For questions about membership, conference registration or exhibiting, call: Forging new alliances that embrace diversity; Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Advocating for opportunities and rights; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Eradicating injustices and inequities; For information on marketing and promotions, permission and reprints, or newsletter submissions and advertising, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, 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] Promotinginclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and litigation; The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities maize these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter 29 W Susquehanna Avenue, Promotingexcellence in services. 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 72 TASH Newsletter, May 2000 MOM 1&11,11, RDEZ PLUDEI20
Call for Papers
Get your attention? Of course. Sexuality and sexual expression are natural and important aspects of our everyday live Yet, for people labeled with severe disabilities opportunities for sexual expression are often overlooked, under supported, or outright denied. Moreover, people with significant support needs often fall victim to sexual assault and abuse. Sexuality and sexual expression are important concerns for all people, but until recently the topic has been given little attention for individuals who require the most support to express their sexual desires, communicate affection toward others, and enter into fulfilling intimate relationships with partners of their choice.
JASH, the journal of TASH, invites contributions to a special series on Issues in Support of Sexuality to be co-edited by Linda M. Bambara (Lehigh University) and Ellen Brant linger (Indiana University-Bloomington). Specifically, JASH invites research studies (quantitative and qualitative), policy analyses, concept/position papers, reviews of the literature, and program or curriculum descriptions that address the following topics:
1. Barriers or impediments to the expression of sexuality and the development of intimate relationships (e.g., attitudes and behaviors of parents and caregivers; restrictive policies and practices of agencies; societal taboos and ethical/ moral dilemmas). 2. Analyses of legal, civil, and human rights issues surrounding the support of sexual expression and intimate relationships among individuals with disabilities (e.g., consent, fertility control). 3. Strategies or approaches for supporting sexual expression and intimacy among individuals with disabilities. 4. Curricula, program descriptions, and program evaluations that address sex education, safe sex, and personal safety (e.g., protection from abuse) for people with disabilities. 5. Reports of the incidence and prevalence of sexual abuse.
In addition, JASH seeks short personal reflection papers by parents, self-advocates, and other participants in the disability field for the Exchange section of the journal. Exchange manuscripts will be evaluated according to their contribution to the discussion of sexuality issues (see author guidelines).
Papers submitted to JASH for possible publication as part of the special series should be prepared according to the Journal's author guidelines, and all submissions will be peer reviewed. Within their cover letter, authors must indicate that they are submitting a manuscript to be considered for the special series on sexuality and indicate the type of manuscript they are submitting (i.e., research report, concept/position paper, review of the literature or program description, Exchange). To submit a manuscript for consideration for this special section, send five (5) copies with a cover letter no later than November 15, 2000 to:
Linda M. Bambara, JASH Editor, Lehigh University, College of Education, 111 Research Drive, Bethlehem, PA 18015.
73 PAGE 3 TASH Newsletter, May 2000 PMCDIM 4M11 IMMUVO'n DM:2E04CM
TASTE MEMBER SURVEY
Howwould you describeTASHto someone who had never heard of it before:
What type of organization isTASH?
What isTASH'sfocus? What shouldTASH'sfocus be? PP@ERID Oka 12neounwe Dtiveagcm. BY NANCY WEISS
The National TASH Board is beginning a process of defining or re-defining Who joinsTASHand why? TASH. Who are we? What is our mission and focus and/or what should our mission and focus be? The Board is asking for your help so that the opinions of as broad a range of members as possible is What makesTASHdifferent from other disability organizations? considered in their work on this issue.
We would appreciate if you would take a few minutes to answer the following questions. Your re- Why are you a member ofTASH? sponses can be mailed back to me at Nancy Weiss, TASH, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204; faxed to my attention at 410-828-6706; What additional input would you offer? you can e-mail your responses to me at: [email protected] or you can respond to the survey via our website at www.tash.org (you'll find the survey on the website in a section titled "Member Sur- Your Name (optional): vey").
Thank you for your input to this process!
Nancy Weiss 74
PAGE 4 TASH Newsletter, May 2000 THE RIGHT TO SEXUAL EXPRESSION
Embracing our Socio-sexual Informa- sexuality and tion Must be Made expressing Available to Students ourselves sexually, in the with Disabilities manner in which we Moving Beyond Beginning at a Young choose, is a natural and Age and Systematically fulfilling aspect of all of Denial, Integrated into Indi- our lives. Thus, all of us Suppression and vidualized Education are entitled to the right Plans aEPs) and to sexual expression and Fear to Transition Plans access to complete and Embracing the Throughout Their accurate information School Years. regarding human Sexuality of People sexuality. As natural as with Information related to sexuality and sexual Disabilities sexuality often is not expression are, few made available at all to individuals with disabili- individuals with disabili- ties (especially those ties at any age due to the BY PAMELA S. WOLFE, Ph.D. with significant disabili- misperception that they and ties) have been are perpetual children. WANDA J. BLANCHETT, Ph.D. able to express their sexuality due to However, age appropriate societal ignorance, fear, and denial of some extent. Despite the progress that information should be their sexuality and right to expression. has been made, many individuals with made available to students as early as possible and be appropriate to their level disabilities still do not have access to These attitudes are based, in part, upon socio-sexual information (Blanchett, of comprehension. For young children, historical events pertaining to issues of 2000). This article will offer practical concepts may be introduced such as the sexuality as they relate to individuals recommendations for providing socio- differentiation between public and with disabilities. Throughout the 1800s sexual training to students with disabili- private. In later years, that same concept and the early 1900s, individuals with ties. could be expanded to include differentia- disabilities were often viewed as asexual tion of appropriate places for sexual beings (Blanchett, Wolfe, & Ruhl, 2000). Clear Polity Statements Should be expression. Consequently, their sexuality was denied Established by Districts and altogether. Agencies Regarding Sexual Further, socio-sexual planning should be Information and Behavior conducted in a formalized manner Individuals with disabilities were also during the development of transition sterilized during the late 19th and early It has been argued that the present laws plans when educators are preparing 20th centuries, without their consent, to designed to protect individuals with students to undertake adult roles and suppress their sexuality and rights to disabilities may affect the legitimacy of responsibilities. Socio-sexual issues can procreation (Elkins & Andersen, 1992; sexual expression (Abramson, Parker, be addressed as a separate domain or may Lettrie & Fox, 1990). This era, known as Weisberg, 1988). Agencies and school be infused into existing domains. For the Eugenics Movement, supposedly districts should have clear policies example, sex education goals can be emerged out of fear that individuals with related to sexual behavior of those who infused into the leisure domain by disabilities, if allowed to procreate, were utilize their services. However, such preparing students for the development likely to produce offspring with disabili- policies must acknowledge the basic of relationships or in independent living ties, as well. sexual rights and responsibilities of domain areas by instructing students on persons with disabilities, not simply the need to respect the privacy of others. This inhumane treatment of individuals negate such activity. The development of Educators have the responsibility to with disabilities resulted in a more policy statements should include a aggressive and effective Disability Rights variety of constituents such as students, Movement that challenged our society to parents, community leaders, health care rethink its treatment of individuals with providers, educators, self-advocates, disabilities. The movement, lead by direct support staff and administrators. self-advocates, advocates, and human Policies should address the purpose and rights/policy organizations, was success- objectives of any sexuality training, a list ful in ending involuntary sterilization of standards of policy and behavior, and and changing society's perceptions to how the policy will be implemented, interpreted and enforced. Continued on page 6 PAGE 5 7 5 TASK Newsletter, May 2000 THE RIGHT TO SEXUAL EXPRESSION
Embracing the Sexuality of of sexuality, and appropriate relation- that they are not dependent on caregivers People with Disabilities ships. Further, these attitudes are often and other personnel. Self-advocacy in the area of sexuality might include the Continued from page 5 based on the level of disability of the individual (Wolfe, 1997). right to say no, protection from abuse, understanding sexual expression as a plan explicitly for sex education and to Personnel delivering socio-sexual natural part of life, reduction of fear and assure that issues are addressed in a information should be aware of their myths, strategies for communicating formal manner through inclusion on an personal values related to sexuality and choice, and how to speak out against Individualized Education Plan (IEP) or persons with disabilities and actively discrimination. transition plan. guard against imposing their values on others. Equally, it is important to Socio-sexual Curricula Should be acknowledge that not everyone is Taught Using Best Practice capable or should deliver sex education Methodologies A review of current sex educa- curricula. Some personnel may not feel tion curricula reveals that comfortable talking about sexual issues The human service field has advanced content areas such as in a frank and open manner. Other considerably in our understanding of anatomy, birth control, and individuals may only feel comfortable effective methods of instruction for hygiene are typically ad- addressing individuals of a certain persons with significant cognitive dressed. However, curricula gender or sexual orientation. Personal disabilities. Collective best practice for infrequently or inadequately traits associated with successful sex instruction includes technologies such as address critical issues such as education include: credibility, knowl- prior assessment of knowledge, explicit friendship, dating, respect edge, trust, "acceptingness," approach- instruction, concept development such toward a sexual partner, and ability, flexibility, and authenticity as the use of "big" ideas to group non-heterosexual relation- (Romaneck & Kuehl, 1992). Personnel concepts, generalization and mainte- ships. Granted, those of us who teach socio-sexual curricula should nance strategies, prompting, chaining, who teach know that the area have access to accurate and current and reinforcement (Snell & Brown, of social skills and friendships information. This information should be 2000). These same technologies should is often difficult to teach well. made available at both preservice and be applied to teaching socio-sexual However, we also know that inservice levels. curricula in a systematic manner. If not social skills and outlined in the available curricula or relationships are key to Socio-sexual Curricula Should be materials, instructors should assess prior acceptance and quality of life Comprehensive in Nature knowledge, present material using and, therefore, must be prompt systems with fading, make sure addressed. A review of current sex education that there is adequate review of concepts, curricula reveals that content areas such and that concepts are linked together in a as anatomy, birth control, and hygiene meaningful way. Further, instructors Sodo-sexual Training Must be Taught are typically addressed. However, should actively program for generaliza- by Knowledgeable Personnel who are curricula infrequently or inadequately tion of skills through strategies such as Aware of their Personal Attitudes/ address critical issues such as friendship, general case programming. Biases dating, respect toward a sexual partner, and non-heterosexual relationships. Our field has long struggled to maintain The effect of personal values on educa- Granted, those of us who have taught that persons with disabilities should have tional content and delivery has long been know that the area of social skills and access to the same quality of life that is an issue in educational programming. friendships is often difficult to teach available to persons without disabilities. Service personnel have struggled with thewell. Equally, however, we know that This right to a quality of life should question of whether content can ever be social skills and relationships are key to extend to issues of sexuality, as well. "value free." The issue of personal valuesacceptance and quality of life and, Persons with disabilities should have the becomes even more magnified when therefore, must be addressed. right to express their sexuality in the dealing with sexuality and persons with manner they choose. If our field is to disabilities given that some individuals Also frequently absent from traditional move forward, we must accord individu- have severely restricted access to per- sex education curricula are strategies for als with disabilities with the right to sonal choice options. Research has consumer self-advocacy related to sexual expression and the responsibilities indicated that educators hold different sexuality. Individuals with disabilities that accompany that right. attitudes toward issues such as the right should be helped to develop the skills to to have children, appropriate expressions advocate for their sexual expression so Continued on page 7 7 6 PAGE 6 TASK Newsletter, May 2000 THE RIGHT TO SEXUAL EXPRESSION
Embracing the Sexuality of Exceptional Education at the University of People with Disabilities Wisconsin-Milwaukee. Continued from page 6 Questions or comments concerning this article may be addressed to: Wanda J. Blanchett, Ph.D., Assistant Pamela S. Wolfe is Associate Professor in the Professor, Department of Exceptional Department of Educational and School Education, University of Wisconsin- Psychology and Special Education at The Milwaukee, PO Box 413, Milwaukee, WI Pennsylvania State University in University 53201, (Phone) 414/229-2656; (E-mail) Have you ever thought about the Path, PA. [email protected] distinctive characteristics that make your state or country such a Wanda J. Blanchett is a member of the unique place in which to live? National TASH Executive Board and an What about the eclectic culinary Assistant Professor in the Department of delights, one-of-a-kind gifts, sports memorabilia of your local teams and special sights and sounds that remind you of your favorite place? References Elkins, T. E., & Andersen, H. E We would love for you to share (1992). Sterilization of persons with those memories and experiences Abramson, P R., Parker, T., & mental retardation. The Association with others that may not have a Weisberg, S. R. (1988). for Persons with Severe Handicaps, chance to journey to your corner of Sexual expression of mentally 17, 19-26. the world. retarded people: Educational and legal implications. American Journal Kempton, W. & Kahn, E. (1991). TASH is introducing a Silent on Mental Retardation, 3, 328-334. Sexuality and people with intellectual Auction as one of the featured disabilities: A historical perspective. highlights of the TASH 2000 Annual Ames, T. R. (1991). Guidelines for Sexuality and Disability, 9, 93-110. Conference in Miami Beach, providing sexuality-related services to Florida, December 6-9. We invite severely and profoundly retarded Lettrie, G. S., & Fox, W. E (1990). you to donate local items to be individuals: The challenge for the Legal aspects of involuntary steriliza- auctioned at the Friday evening nineteen-nineties. Sexuality and tion. Fertility and Sterility, 53, (3), event. Not only is the fair market Disability, 9, (2), 113-122. 391-398. value of all donations tax deduct- ible, but proceeds from the auction Blanchett, W. J. (in press). An Romaneck, G. M., & Kuehl, R. will benefit the TASH Conference exploratory study of young adults (1992). Sex education for students Scholarship Fund. The Fund is with learning disabilities sexual risk with high-incidence special needs. used to assist people with disabili- behaviors and HIV/AIDS education: Teaching Exceptional Children, 2, 22- ties, parents and other family Implications for comprehensive 24. members to attend future TASH health education programming. conferences. Remedial and Special Education. Snell, M. E., & Brown, E (2000). Development and implementation of If you would like to make a dona- Blanchett, W. J., Wolfe, P S., & Ruhl, educational programs. In M.E. Snell tion or find out more details, please K. L. (2000). Sexual knowledge level E Brown (Eds.), Instruction of contact Priscilla Newton, Director and attitudes of individual with students with severe disabilities (5th of Marketing, at 410-828-8274, ext. cognitive and development disabili- ed) (pp. 115-172). Columbus, OH: 102 or send an e-mail to ties: A review of literature. Manu- Merrill. [email protected] script submitted for publication. Wolfe, P.S. (1997). The influence of TASH will acknowledge all silent Carnine, D., Silbert, J., Kameenui, E.J. personal values on issues of sexuality auction donors in the official (1990). Direct instruction reading and disability. Sexuality and Disabil- conference program, on TASH's (2nd ed). Columbus, OH: Merrill. ity, 15(2), 69-90. web site and in the monthly News- letter.
PAGE 7 TASH Newsletter, May 2000 TEENS AND SEXUALITY
begin teaching boundaries. In fact, most But I thought.. of the Sexuality Clinic's referrals are Sexuality and "boundary violations" brought on by the Teens with impulse of a moment. Parents need to realize that their child Developmental needs to be very aware of body changes, privacy rules, personal space and dis- Disabilities tance, relationships and permission. Most parents of typical children teach BY DAVE HINGSBURGER, DEBRA these rules and boundaries naturally SNELL VanNOORT and SUSAN TOUGHthrough chance and circumstance as their child grows, but parents of a child with a disability may believe that it is OK (as "The police are here and they are saying awful time of human development. We believe occurred in one of our cases) to have their teenage child sit on the babysitter's things about my son..." "My daughter is that it is possible to prevent some of lap when watching television at night. pregnant, how can this be .. .?" "I thought my these behaviors from occurring. The child would be safe from abuse my God it Sexuality Clinic is now actively promot- When that same child reached up and was her teacher!" "I'm not up to this, my son ing twelve recommendations for parents touched the babysitter's breast, everyone has announced that he wants to get married." of pre-teens. A sidebar which contains was shocked. Boundaries of body additional information for parents of (private parts), of space (private places) The Sexuality Clinic at York children with significant disabilities and of topic (private subjects) need to be Central Hospital in Richmond Hill,appears at the end of this article. emphasized and adult forms of affection Ontario, Canada, has seen a rapid and closeness need to be developed. increase in referrals for teenagers who have made sexual mistakes. Many of 2. Take a look at your child's social circle. these teens live in homes with their Your child is getting older. So should his As children grow toward adulthood, families, attend local schools and or her friends. Sometimes it's easy to slip participate in community events. In parents must recognize that a child's up and think, "Well, his mental age is 5, 1981, the first year of service delivery, increasing awareness of, and interest so it's natural for him to play with little the Sexuality Clinic had a referral of only in sexuality is a normal developmen- kids." Leaving your child, as a young teen one teenager. This year, almost twenty tal process. Your child doesn't need approaching puberty, with a social circle years later, a full 25% of all clinic medication, surgery or punishment. of younger children is asking for trouble. referrals are for teenagers with develop- Your child needs guidance. The clinic has just supported a young mental disabilities. family through an arduous court battle wherein their child was charged and As we design approaches for working found guilty of "sexually offending with teenagers, clinic consultants, in the 12 Recommendations for Parentsof against a youngster." It seemed that the heat of frustration, often make the same Pre-teen Children with young man was simply "playing doctor," clinical observation: "This is just stupid Developmental Disabilities but unlike his typical peers who are stuff." This comes from a realization that engaging in exactly the same behaviors, the behavior that led to the referral is 1. Sexuality is an issue. his experimentation was with very young often fairly typical for hormone-driven Many parents of children with develop- children. teenagers, but it also involves either bad mental disabilities are poorly prepared judgement (on the part of the individual for sexual interests developing in their It is not cruel to ensure that your child with a disability) or a panic-stricken children. One parent was told by her isn't socializing with kids much younger reaction (on the part of school personnel doctor that her child's sexual organ was than him or herself no matter how or parents). just a "flap of flesh" that had no meaning innocent it seems. Your child needs to for her child. Being told, or coming to socially advance and not be left in A number of these teens will be given a believe, that one's son or daughter will be situations of danger. Ensure that others label that will have them considered a "perpetual child" or is a "sexual understand this, as well. Several years "dangerous" for the rest of their lives innocent" is dangerous. By not seeing ago the Sexuality Clinic dealt with a when, in reality, they are simply making that a child is growing towards adult- mistakes that are particular to a specific hood, parents may not feel moved to Continued on page 9 PAGE 8 78 TASK Newsletter, May 2000 TEENS AND SEXUALITY
Sexuality and Teens wonder why I thought that Shannon assertiveness necessary to ask these was different?" questions. You may need to see a with Developmental teachable moment and set up the Disabilities 4. Recognize that sexual development situation by actively inviting questions. Continued from page 8 and curiosity is a normal process. Your "I've noticed that you like looking at child doesn't need medication, surgery pretty girls when we go for a drive, or punishment. Your child needs would you like to ask me any questions?" situation where a young man in his late guidance. You can also develop your child's sexual teens was in Sunday school with young Every parent of every teenager has self-esteem by affirming the pleasurable children. He went into the bathroom to wished that his or her child's sex drive aspects of being an adult while setting up watch a little girl, with whom he'd been would run out of gas. Some doctors a discussion. Saying things like, "It feels playing, use the toilet. She saw nothing have advised parents to put their nice when that good looking guy at the wrong with this and told her parents in teenaged boys on sex drive reducing bank flirts with you, doesn't it? Do you casual conversation about what had medications (or on a medication with want to talk about boys?" promotes happened. Her parents did see somethingsex drive reducing side effects) as a way discussion as well as shows that you are wrong with what the young man had of dealing with (or not dealing with) willing to talk about their sexuality in done. The young man's parents had their child's burgeoning sexuality. positive terms. assumed that their child was in a class Others have suggested sterilizing young with other teens and were shocked to women with disabilities as a way of 6. Allow adolescent dreams marriage, discover that the Sunday school teacher getting around the "messiness" of house, babies. had decided that he should be placed withmenstruation. These ideas are old, tired There used to be "Impossible Dreams" little children. The Sunday school teacherand wrong, Your child is going through for people with disabilities. These were explained her decision by saying, "He's a normal developmental period. As primarily about relationships. Many just a child in an adult's body" hard as it may seem, he/she will get doctors have told parents that their child through it and grow into adulthood. will never grow up, get married, and/or 3. Increase supervision by taking a look a have children. Parents of kids with little more often. Living a "normal" life was a hard won disabilities have been advised to "grieve As soon as hair begins to develop on the battle for kids with disabilities. Your the loss of the normal child and come to body, it's time to become vigilant. When child will now begin a "normal" battle accept the child with the disability" your child is socially engaged with others,with you. They will have more than a Many parents say that the hardest thing take a look a little more often. Make suresex drive. They will have a drive for about having a child with a disability is that your child feels your presence and relationships with others. They will the realization that they won't ever walk feels your supervision. Let him or her have a drive for intimacy with another. down the aisle or hold a grandchild. know that you can walk into a room They will want to establish themselves Well hold on. The world has really where he or she may be entertaining a as separate from you. We have three changed. friend at any time. Don't say to yourself, bits of advice: Let Go. Let Learn. Let "It's unfair to supervise her more during Live. That doesn't mean that you just let the teen years." Trust that parents of teensyour child go through puberty and without developmental disabilities are sexuality without guidance. They will doing exactly the same thing. And by the need your input. If your eyes are set on way, parents of kids without disabilities guiding them to a fulfilling life full of are worried about exactly the same relationships you've set your sail consequences for sexual play. correctly and your guidance will be fair.If your eyes are set on a life One parent was so relieved that her without other relationships your daughter finally had a friend, that she let guidance will be interference. her daughter and a boy from her class go into her bedroom and would leave them 5. Know when to be "askable." for hours at a time. She had thought that Adolescent body changes are scary. her daughter, because of her disability, Know when to intervene. When your was asexual. The young male visitor, whochild is beginning to get erections or is didn't have a disability, did not make the developing breasts, become "askable." same assumption. In talking to her For kids with disabilities, being afterwards, the mother said, "You know, I "askable" might be slightly different would have never let my other daughter than for parents of other teens. Your have a boy in her bedroom at that age.I child may not have the language or clic, I 9 Continued on page 10 PAGE 9 TASK Newsletter, May 2000 TEENS AND SEXUALITY
Sexuality and Teens Your kid may want to get pierced or have a disability. The fact is that People First and with Developmental tattoo. Well, you have the right to set other self advocacy organizations are Disabilities boundaries the same as any parent does. often places where people with disabili- Your kid will just have trouble defying ties first meet their future wives and Continued from page 9 you. It's hard to run down to the mall husbands. and get your nose pierced if your dad has Many people with disabilities have to drive you. Try to be open to how your One of the biggest problems that some formed relationships and have parented child wants to express his or her tastes in people with developmental disabilities and done so successfully. When your clothes. have is that they are uncomfortable child dreams out loud about his future, around others who have disabilities. let him. When she talks about getting You may think your little boy with Down How mentally unhealthy is that? Being married or having children, let her. Let Syndrome looks cute in a tie. The other uncomfortable around people who are him or her point at a big house with a kids think he looks "goonie." By being "like" you is a massive self-esteem white picket fence and express his or her aware of fashion and keeping your kid upproblem. desire to live there. to date with what they wear, you help to give your child a big step up in school. This isn't to say that people with disabili- Even if your child never does marry or Remember, he or she is already getting ties should be segregated together. It's have kids, the dream is still wonderful. teased for being different, adding to that just to say that they shouldn't be forced It's an honor to share the dreams of your doesn't help. apart, either. If your child is going to child. It's cruel to crush them. One have a chance at a real relationship, she mother, fearing that she'd set her child up8. Create social situations by accepting has to love herself first, then have the for failure, kept telling her daughter that other people with disabilities as potential opportunity to love others. One dad dreaming of marriage was inappropriate. partners. reported, "I think I denied my son the (Inappropriate?) She ended up by Many parents who have fought long and opportunity to be with others who had alienating her daughter. No, her daugh- hard for full inclusion, who have avoided disabilities and in that way I could keep ter didn't get married. No, her daughter any hint of segregation, who have lodged him celibate.I knew, in my heart, that he doesn't have a boyfriend. The fact isn't law suits in order to free their children, wasn't going to date the teenaged girls relevant; what's relevant is that your child find adolescence a trauma. It is hard to down the street. It was an odd way of is letting you see into a corner of her see other kids who once willingly played denying him sexuality, while pretending I heart. Some of us have had dreams that with your child, move on. It is hard to was getting him what was rightfully his. have guided us through our lives see your child look out at typical peers And now he's grabbed his sister's breast getting what we dream for isn't as and see themselves left behind. It is hard and pats his mom on the butt and leers at important as having the dream. to see your child socially alone. One her. I'm a man, I should have seen this mother said, "I was desperate. She was coming." Some of you will hear of a dream for a just so lonely. One night, against my life lived in a gay relationship. It may better judgement, I put her in the car and9. Seek out education and educational seem like the world is asking you to headed off to Special Olympics. I cried materials. climb another mountain, but remember myself to sleep that night. She had such There are great books and curricula for that people with developmental disabili- a good time. She seemed to really relax teaching your child about sexuality. ties are a diverse community and and have a good time. In one night she Make sure it's up to date about issues some of them are gay. These dreams are met two friends who she wants to call regarding AIDS and other STDs (sexually just as real and just as important to your and visit." transmitted diseases). Urge someone to child. teach a class, and get your kid into the The fight for inclusion should have class. 7. Tight jeans and plunging necklines meant the fight for options, all sorts of (Forgive the absolute honest representa- them. But somehow the "option" of 10. Support relationships when they tion of our culture in this example.) hanging out with others who have happen. Who hasn't walked by a couple of teens disabilities became wrong. Your child When your son or daughter meets looking at clothes in a mall and heard needs to find people with whom he or someone, greet him or her and get to them say, "That's just way too retarded," she can find partners and begin to date. know his or her family. and then burst into laughter. Kids judge It is highly politically incorrect to suggest each other, rightly or wrongly, on what that we notice a fact. That fact is that they wear and how they present them- when most (emphasis on most) people selves to the world. Your kid may want with intellectual disabilities get married, to wear fashions that you find abhorrent. they marry another person with a similar Continued on page 11 0 PAGE 10 TAM. Newsletter, May 2000 TEENS AND SEXUALITY
Sexuality and Teens with Developmental Sexuality and Teens with Significant Disabilities These are very teachable skills to Disabilities even those with significant disabili- Continued from page 10 "Sexuality. Hmm. Well, my child ties. One tool you can use to assist requires total care, so I don't think with this is the Protocol for Per- sonal Care, developed for use with 11. React calmly. that I need to worry about issues related to sexuality" Many parents individuals who have significant When you find a condom in your son's care needs.It is available for a very wallet, put it back. of children with significant disabili- ties ignore the fact that their child islow cost by contacting Community 12. You'll need the hanky. becoming an adult. With all the Options at 250-380-6363.This When your daughter marries, cry work that needs to be done to just may be one of the most important joyously. care for their child, sexuality seems contacts you make. like a needless worry. While it may be true in most instances that the FACT TWO: The drive and need greater the disability, the less likely for intimacy is greater than the Susan Tough is director of York an individual will form a relation- drive and need for sex. Change the Behaviour Management Services in ship that leads to sexual expression, question from, "How does my child Richmond Hill, Ontario, Canada. even so there are two facts that meet his or her sexual needs?" to York Behaviour works with people parents need to keep in mind when "How do my child's intimacy needs with developmental disabilities. raising a child with a significant get met?' We can work at ways that disability. children can get their intimacy Debra Snell VanNoort is a consult- needs met. Remember, you need to ant in the Sexuality Clinic at York develop ways that your child, when Behaviour Management Services. FACT ONE: Parents need to realize that their child is at risk to be outside of the family or in care, Dave Hingsburger is in private sexually victimized. In fact, the gets his or her intimacy needs met practice and is a consultant to the greater the disability, the greater the by care providers.It is absolutely Sexuality Clinic. risk. Given that your child can't inappropriate that others use touch always use words to tell you that he as the primary way of meeting your Questions or comments about This or she has been hurt, you need to child's intimacy needs. There are article may be addressed to Dave think about how to protect your so many ways of doing this that Hingsburger at one only needs to be creative.
IT'S TIME ONCE AGAIN TO SUBMIT strated outstanding efforts leading to the understanding of TASII AWARD APPLICATIONS! challenging behavior; and whose actions have advanced the use of non-aversive interventions and progress in the use of positive behavioral supports. Each year at the annual conference, TASH confers a series of awards that recognize individuals, teams, organizations, or media 2000 ALICE H. HAYDEN AWARD which exemplify the spirit and mission of TASH. This $500.00 cash award will be presented to a doctoral Submit your application (found on the following two student enrolled in a program in education or a related field pages) today! and who demonstrates potential for leadership in teaching, scholarship, and service on behalf of people with significant disabilities. The individual needs to have demonstrated a a Who comes to mind when you think of someone continuing desire in working in partnership with people who has made a positive difference in the lives of with disabilities in accordance with TASH values. persons with significant disabilities over the past year? 20(K) MEDIA AWARDS Ci,G Have you recently seen an outstanding media piece This award honors presentations in either print or film, that embodies the values of TASH? which best promote the inclusion of people with significant disabilities in all aspects of community life, and which have fiDo you know of a student enrolled in a doctoral reached a national audience. Criteria for selection include: high quality, accuracy of information, meaningfulness of program in education or a related field who demon- subject matter, potential for consciousness-raising, and strates leadership, advocacy, and commitment to efforts promotion of quality of life for people with disabilities. of individuals with disabilities? 20(K) COLIABORATION AWARD 0 Is there a team of people working together to TASH will recognize collaborative teams of persons with improve the quality of life for a person(s) with disabili- disabilities, family members, professionals, community ties? members and/or peers, who are engaged in projects and advocacy efforts to ensure the implementation of TASH This is your chance to honor such accomplishments values in their local community, or in a way that has affected others at a local, state, regional, and/or national with official recognition. Please take the time to level. The work of the recipients of this award should serve submit an application. Awards will be conferred as as an inspiration for other community efforts, and demon- part of the TASH Annual Conference to be held in strate creativity in supporting an individual or individuals Miami, December 6-9, 2000. Award applications to realize the goals of self-empowerment and full will be accepted through August 31, 2000. Please community inclusion. be sure to indicate for which award you are applying on the application, and submit all re- 20(X) THOMAS G. HARING AWARD quired documents or information requested for FOR RESEARCH that award. This award is presented to promote research and scholarly activity in the field of significant disabilities. The award will 2001) POSITIVE APPROACHES AWARD be presented to the author(s) of a study of particular significance that was published in JASH within the two This award is presented to the person whose contributions years prior to the annual conference.The study will have have served to advance non-aversive intervention with demonstrated scientific merit, and have made an important persons who display challenging behaviors; have demon- contribution to the disability field. 0 2000 TASII AWARD APPLICATION - Applications due August 31, 2000
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 being made. Please see the other side of this form for a list Street Address: 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 only one award. Zip/Postal Code: O Alice H. Hayden Award Daytime Telephone: ( ) OCollaboration Award Evening Telephone: ( ) Is this individual(s) a member of TASH? Cl Media Award 0 Yes 0 No OPositive 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 31, 2000. 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:
C3 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: AWARD 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 Street Address: individual himself/herself, the family, peers of the individual, 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 significant 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 nomination. *** Alice H. Hayden Award: Name of Team Member: 1. Attach a curriculum vitae outlining your history of: a) higher education (including major, 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. Is this individual(s) a member of TASH? 3. Attach two copies of the nominee's work, or of the specific 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): 1. 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 Evening Telephone: ( ) the following to hereby grant permission to TASH to show: (Title) Is this individual(s) a member of TASH? for, but not restricted to, promotion of the TASH Media Awards and 0 Yes 0 No the TASH Annual Conference. Similarly, as it applies to the promotion of the TASH Awards and the TASH Conference, the *** producers waive any monetary compensation . Signature: U4 SUPPORTING FRIENDSHIPS
Currently, in the City ment"(1991) and "Backward Planning," a of Seattle, the poster with a graphic image of the Requesting Department of group's vision was developed. The group Neighborhoods of agency providers and staff knew that Inclusion From the operates an inclusion their vision would not be realized CommunityThe project called without the assistance, support and "Involving ALL involvement of the community. The Necessity of Asking Neighbors," which is community needed to be asked if they funded jointly had the same vision, how they saw their BY ANGELA NOVAK between the City and role in realizing this vision, and had to be AMADO, Ph.D. and the state Division of asked to expand their current role. To Developmental get this feedback, a "Community Mem- JACQUELINE VICTORIAN- Disabilities to ber Forum" was scheduled. BLANEY support each Seattle neighborhood in Agency personnel invited people they including its mem- knew in town who were key leaders in bers with develop- the community, people who were active mental disabilities. and could make a contribution, and their Working to support fully This is the only city in the country with a own friends. Some of the people invited inclusive communities for staff position dedicated to neighborhood included agency board members, people with developmental inclusion of individuals with develop- ministers and priests. This first group disabilities involves three groups of mental disabilities. Various avenues for said they shared the vision and that the people: individuals with disabilities, staff inclusion for individuals, their families people who really needed to hear it of the human services agencies that and neighborhoods include: pursuing weren't at the meeting. So additional support them, and community members. personal interests in the neighborhood, Forums were scheduled. Most of the work to date about commu- nurturing neighborhood hospitality, nity-building, community connecting, getting involved in existing neighbor- In the second meeting, an auto dealer and supporting friendships between hood organizations, developing inclusive started speaking about his friendship individuals with disabilities and commu- neighborhood organizations, and with a blind musician. These two were nity members has been from the direc- organizing neighborhood projects and both members of an organization called tion of staff supporting the individual to efforts. Ducks Unlimited (duck hunters who also approach community. However, there is work to preserve wetlands and marsh- a different direction: asking community Another mechanism which some agen- lands). The blind musician had gone to to include people with disabilities. cies have undertaken, which could be the auto dealer to ask him to go fishing Success for full inclusion involves the pursued by others without the frame- together.The auto dealer had accepted, absolute necessity for "asking" and of work of a formal project, is called they'd gone fishing several times, and becoming an "askee" (Schwartz, 1997). Community Member Forums. In some had become friends. The auto dealer small communities in southwest Minne- underlined the necessity of asking. He John McKnight, Kathy Bartholomew- sota starting in 1995, all the human said, "I would never have gone to him to Lorimer and others at Northwestern services agencies in the area worked ask him. But just because I wouldn't have University's Center for Urban Affairs and together to identify their vision for an gone to ask him doesn't mean I'm not Policy Research were pioneers in this inclusive community. Using O'Brien and friendly or not willing.I had to be direction. In the original Logan Square O'Brien's "Framework for Accomplish- asked." Project in the City of Chicago (O'Connell, 1988), the neighborhood A minister in Nebraska who had been association was the organizing entity for "We have always viewed the approached by a group home asking efforts to determine to what degree community as the web of relation- about potential friends for their residents ordinary citizens were aware of fellow ships and belonging that people needed.... The concept of the also emphasized this necessity of asking: neighbors and citizens with developmen- community as an equal and active "1 would bet a month's preacher's salary tal disabilities, and for asking these partner in achieving relationships (not that that's much money) that every ordinary citizens to involve and include and memberships for people with congregation in the country, whether it's all members of the community in their disabilities turned out to be just Protestant, Catholic, Jewish or Muslim, lives. the shift in thinking that we has at least one person who is willing to needed to get unstuck."
Continued on page 16 5 PAGE 15 TASK Newsletter, May 2000 SUPPORTING FRIENDSHIPS
Requesting Inclusion from of the year, progress was definitely more service organization. The concept of the the Community -- The significant because of the Forum's community as an equal and active partner in Necessity of Asking involvement, however, not everyone was achieving relationship and membership turned successfully connected by year's end. out to be just the shift in thinking that we Continued from page 15 Agencies often had to re-organize their needed to get unstuck. We had always viewed staff time, individual schedules, and the community as the web of relationships and agency focus. When asked why the belonging that people needed above all. But develop a friendship with a person with a group hadn't accomplished its goal, the we had never seen the community as experts disability. But I would also bet a month's radio host replied: "Because the agencies in building community. Despite our gloomy salary that 90% of them don't know that wouldn't give it up!" record on community-building, we still implicitly saw ourselves as the experts. they have this willingness...because they haven't had the opportunity to find that out, they haven't been asked." The strategy that represented the key break- through was the concept of the Community In 1996 the southwest Minnesota Forum. We adapted it slightly in that we Community Members Forum group began with the 26 people our agency served, committed to meet monthly for a year in rather than with a particular geographic the town of Fairmont. Some of the community. But the major design was the community members who attended same. Utilizing the community contacts or included a local newspaper journalist, a our staff, we identified and invited community county commissioner, a city council leaders who lived in the same communities as member, a man who had a radio show the people we supported to attend a Commu- nity Forum. The community leaders at the and a local cable access show, some high school students who were involved in a first Forum included the president of the Elks diversity initiative, an ex-social worker Discussion of the Minnesota experiences club, a realtor, the director of a community who had many connections in town, was shared in Louisiana, and a provider center, a legislative aide, the owner of a fast ministers, and a member of the Minne- agency in Baton Rouge decided to also food restaurant and the coordinator of a youth sota Valley Action Council. Some of the try these forums. Their experiences are group. associations which became involved in shared by the agency director: the effort over that year included Knights We held the Forum at the home of a staff of Columbus, Kiwanis, Women of Today, "After many years of commitment to person- member, with plenty of food and refreshments. the Social Concerns Committee of a centered supports for 26 people with develop- The agency director introduced the purpose of catholic church, and several ministerial mental disabilities, our agency took a the Forum as seeking the advice and assis- associations in the region. systematic and critical look at how effective we tance of community leaders in supporting the were being in helping people to achieve their people with disabilities at the Forum in The Fairmont Community Member personal outcomes. We were surprised and achieving their particular dreams of member- Forum group that met in January 1996, disappointed by how limited our assistance ship and relationship. She acknowledged that upon deciding to meet monthly for a had been in supporting relationship and human service agencies alone were incapable year, felt they needed to have a goal or a membership outcomes. We could point to of achieving lasting and deep relationship and mission what were they going to some positive examples, but most people membership opportunities. She affirmed the accomplish? The community members continued to live without friendship or community leaders in the room as the experts asked how many people with develop- belonging. in community-building. In fact, as she pointed mental disabilities lived in this town of out, they were building community all the 11,000 people. The agency staff esti- Another pattern was clear. Agency staff had time. mated around 250 adults. The group developed genuine and reciprocal relationships committed that by the end of the year, all with the people they were helping to support, Next, six people we support introduced 250 people would be connected with often including them in family visits and themselves and described their interests. The nondisabled friends, be part of clubs and events. Though these relationships had real community leaders insightfully brainstormed groups, volunteer in ways that expressed quality, the person's circle of friends remained opportunities, some under their direct their interests, and/or have ordinary jobs. narrow and was significantly affected by the influence, others that they were willing to patterns of staff turnover and discontinuity facilitate. The community members saw it was that plague the human service world. entirely possible within a year to accom- About the time we heard about the Commu- plish that for all 250 people! By the end nity Member Forums in Minnesota, we had done all we could think of to do as a human Continued on page 17
PAGE 16 6 TAW. Newsletter, May 2000 SUPPORTIG FIEBENDSHIPS
Requesting Inclusion from the CommunityThe REFERENCES ARE YOU A UNIVERSITY Necessity of Asking PR 1FESSOR? Continued from page 16 O'Brien, S. & O'Brien, C. (1991) Framework for Accom- TASH has a Student plishment. Lithonia, GA: Membership Program! One woman was interested in joining the Elks Responsive Systems Associates. Club, a social club and service organization. The program was developed through O'Connell, M. (1988) The gift With the help of the director, she was initiated discussions with professors who of hospitality: Qpening doors of three months later and is a devoted member. wanted to encourage professional community life to people with identity through student membership disabilities. Northwestern The owner of the fast food chain hired one in a strong advocacy organization University: Center for Urban young woman. He has since spoken at a while assuring that their students had Affairs and Policy Research. major conference regarding all she has brought access to enough issues of JASH for to his business, making his store a better work them to be able to complete a variety Schwartz,D.B. (1997)Who community. of journal article review and compari- cares? Rediscovering commu- son exercises they assign. One young man with artistic gifts was invited nity. Boulder,CO: Westview to paint a mural at the community center. He Press. The package works like this: did a beautiful job, and is now taking an advanced art course at the local university, Professors can either assign TASH where he is making some good ties with other membership as one would a text students. (4 book or package of readings, or can offer it as an option. Either way, if Another woman was assisted by a legislative ten or more students join, they aide to tell her life story to children at local receive a discount off the already low schools. The aide also introduced her to two associate member rate. The discount older adults at a nursing home to whom she amount increases as the number of taught signing and with whom she developed students signing up increases. a real friendship. Regardless of how many students We continue to hold Forums about every six join, TASH provides a year's worth of weeks with new and former community Announcing back issues of the journal to all leaders and both new and former people the students signing up under this plan. served by our agency. The same patterns of This means your students will start success continue: jobs, membership, and TASH the semester with a year's worth of friendship opportunities. The community Update cutting edge research on their shelf brings us not only their community-building and can build their collection over experience and expertise, but the deeply-lived E-mail the years to come. Under this plan, conviction that there is a place to really belong Listserve! students receive all of the regular for everybody" membership benefits during the This is a forum for TASH members, coming year in addition to an friends and supporters to discuss the extra full year's worth of journals! For further information contact Angela latest issues affecting people with Novak Amado or Jacqueline Victorian disabilities. The listserve provides An introduction to TASH is likely to Blaney, Human Services Research and members and other interested persons be one of the most valued resources Development Center, 1195 Juno Avenue, with an opportunity to identify and connect with others who share particular you can offer students as they enter St. Paul, MN 55116. interests, expertise and experiences. the disability community in their professional capacities. To receive You can subscribe directly from TASH's materials or to learn more about web site at www.tash.org, or you can TASH's Student Membership Pro- send an e-mail to:
PAGE 17 TASH Newsletter, May 2000 TASH CLASSIFIEDS F East Bay Innovations 440 Grand Avenue, Suite 425 Oakland, CA 94610
DIRECTOR-Employment Services
Progressive Oakland non-profit seeks Director of Supported Employ- ment in Alameda County.
Requires experience with job development/training, support strate- gies, employee supervision, program budgeting, BA and 5 years ex- perience.Salary: $35-$38K/yr., benefits.
Teachers Needed Washington Elementary Mendham Township (N.J.) School District Phoenix, Arizona Schools
Innovative program in large elementary YOU may be the teachers (2) we need for district seeks special education teachers, speech pathologist, and occupational thera- our inclusion teams.Will co-teach with pist for students with autism in Phoenix, regular education staff.Knowledge of Arizona. Spectrum Disorder and Down Syndrome essential. Send resume to: Training provided in North Carolina by TEACCH. Special education teachers needed Kathleen Woodward in all areas for ages 3-14.Arizona special education certification required. Director of Special Services Mendham Township Schools Contact Carol Roth, Administrator for West Main Street Special Services, Washington Elementary Brookside, New Jersey07926 School District, 8610 N. 19th Avenue, Phoe- EOE I nix, Arizona 85021, Phone: 602-347-2632
PAGE 18 TASK Newsletter, May 2000 SCHOOL-LINKED SERVICES
School-linked Services, [This is part two of a two part article. Part I the mainstream rather than to be "sepa- appeared in the April 2000 TASH Newsletter] rate but equal." In Part I of this two-part series, I discussed some of the implications of Systems of care are now being replaced the rapid shift in federal and state by what might be termed, perhaps welfare policies as we move into the age optimistically, systems of opportunity. As of globalization. As I write this piece, tax-based resources targeted for special- violent demonstrations are occurring in needs populations become directed to Washington D.C., led by the Mobilization more localized arrangements, the for Global Justice against the Interna- probability that the voice of participants tional Monetary Fund and the World will enter the conversation increases. At Bank. These demonstrations, deliber- the turn of the last century, problems ately organized by the AFL-CIO to call affecting specific groups of people were attention to the worldwide plight of Opportunity Throughaddressed at the level of the community workers under globalization policy, move and, in fact, it was these very processes into civil disobedience tactics as a way to Local Partnerships that defined "community". America's capture media attention. sense of community was lost during the BY WAYNE SAILOR industrial age but it may, ironically, be The Washington demonstration exactly poised to reinvent it in the age of mirrors the earlier violent demonstra- enacted by the California Healthy Start globalization. tions in Seattle against the World Trade program and the Kentucky Education Organization. Tactics of civil disobedi- Reform Act, greater opportunity arises ence mainly on college campuses in the for direct consumer participation in late 60's and early 70's were successful in structuring these new schemes for The premise of forcing an end to the war in Vietnam, but organizing supports and services. school-linked services is during that period the mass media this: Why not take the brought the excesses of the war with In this article, one such localized special resources, services and supports available at stark images to virtually all Americans on arrangement, called "school-linked schools (special education, a daily basis. Not everyone agreed with services," is examined. In the previous era, the age of industrialization, the vocational education, Title I, the protesters, but everyone understood etc.), integrate them within the basis for the protests. Today's welfare state evolved by creating systems the schools so that all protests are poorly understood. The of care. Well intentioned, these systems resources are deployed to media cover the sensational aspects of were grounded in a philosophy of help all kids, and then link demonstrations, but apart from National protection under a doctrine of "separate them, through a community Public Radio, provide few reasoned but equal." People with disabilities, it planning mechanism, to analyses of the underlying issues. was thought, needed to be cared for by similarly integrated commu- highly trained professional specialists nity-based resources and supports (DD system, For people with disabilities, their friends and in places where their basic human needs could be met in a manner that vocational rehabilitation, and supporters, the issues loom large. As mental health, child welfare, the federal and state governments would be both economically feasible and United Way)? The result implement new policies dismantling the convenient for service providers. Hence, would be a "seamless web" of welfare state, both crisis and opportunity we evolved special education and its supports, resources and became emergent at the local level. Some separate placements, sheltered work- services that could be see only gloom and doom resulting from shops, day activity programs and larger, decategorized and planfully the multinational corporate network more diversified, state institutions. Now addressed to the needs of we are at the end of the industrial period children, adults and families agenda. There is another possible as articulated and scenario, however, with perhaps more of and systems of care suffer from two deficiencies. First, they have become chosen by the a silver lining. As federal and state consumers. governments further devolve resources expensive and the quality of care they and responsibilities to more localized provide has come into question. Sec- systems through privatization and ondly, the "consumers" of these systems initiatives to create local agency consor- have consistently argued for inclusion in tium arrangements, such as those Continued on page 20 PAGE 19 TASH Newsletter, May 2000 SCHOOL-LINKED SERVICES
Reinventing Community in the and "family-resource centers." In the "facilitators" who are placed at schools to Age of Globalization case of school-based examples, largely link families with service and support needs through the community consor- Continued from page 19 publicized through the writings of New York author Joy Dryfoos, high school tium. A number of school-linked campuses become co-location centers for services arrangements have reported integrated community services. Often successful outcomes with disadvantaged School-linked services (or "service health clinics, established on high school populations, including those reflecting integration") arrangements have been campuses, become the starting point for positive consumer satisfaction results. around since about 1972. They have not introducing social welfare programs, proliferated because efforts to integrate mental health and DD programs, job The third model, family resource centers, services and supports for special needs force development programs, etc., all at tends to be almost exclusively identified populations at the local level have failed the school site. While there have been with social welfare programs and often to achieve an alignment with big-agency many successful outcomes from ex- has few or weak ties to the schools. dominated policies and control of fiscal amples of school-based, service integra- Where these programs do form partner- resources at the state and federal levels. tion efforts, they have run up against ships with schools, they became very The premise of school-linked services is significant resistance from religious much like school-linked services ar- this: Why not take the special resources, groups concerned with abortion issues rangements but without the school site services and supports available at schoolsand "family rights." They have also been facilitators. (special education, vocational education, criticized for failing to achieve integra- Title I, etc.), integrate them within the tion within schools with community Recently, Hal Lawson, Katherine Briar- schools so that all resources are deployed services, for example, becoming clusteredLawson and others have written on the to help all kids, and then link them, at one end of the campus and the rest of critical importance of inclusion and of through a community planning mecha- the school at the other end under a incorporating special education resources nism, to similarly integrated community- different administrative officer. into what they call "community schools." based resources and supports (DD The community school movement is a system, voc rehab., mental health, child Where school-based systems have tended formal partnership of schools, families of welfare, United Way, etc.)? The result to focus on the high-school population, the kids, who attend the schools, and would be a "seamless web" of supports, school-linked services arrangements havenetworks of community services provid- resources and services that could be tended to be focused on the early ers, to not only integrate services and decategorized and planfully addressed to childhood and elementary age groups. supports but to re-invent the whole the needs of children, adults and families These arrangements are often associated community support agenda as part of the as articulated and chosen by the consum-with partnership agreements between process. In the view of the Lawsons, ers. Ideally these integrated, school districts and one or more entities special education and its students are decategorized resources could then be that have successfully integrated commu- regarded as resources to the school and to co-located, either at schools or nearby so nity supports and services through a the community rather than populations that everything from immunizations to single agency or a new, not-for-profit in need of separate care. Inclusion is food stamps and wheelchair adjustments corporation, organized for that purpose. advanced as a way, not only for general could be obtained in a single "one-stop Models of this type will have some kind education students to benefit from shop". of planning board or council, usually association with diverse kids, but to with some consumer representation. obtain special education resources that Until recently, model demonstrations of California's Healthy Start initiative, now are needed for all students (ie., school- school-linked service arrangements have in its eighth year, uses this kind of wide positive behavioral support; or not proliferated by "going to scale" approach and requires that the Local school-to-work transition planning). within communities or states. Recently, Planning Councils administering the however, publication of impressive programs have at least 50% consumer School-linked services arrangements outcomes on health, social and academic membership. School-linked services such as represented by the "community achievement from some of the statewide arrangements have struggled with efforts schools" partnerships are helping to initiatives, particularly Vermont, Ken- to create sustained funding for their bring about the changeover from systems tucky and California, have begun to shift consortium arrangements and have fallen of care to systems of opportunity. When the momentum toward reinvestment in prey to political changes in state-level students and others with disabilities school-linked services initiatives. administration. Colorado and Kansas come to be valued for not only what they both had school-linked services arrange- can accomplish despite adverse circum- The most common types of large-scale ments as state initiatives, but both melted stances, but what resources they bring to applications of school-linked services candown when a different political party the common table, then new choices and be found in three arrangements: "school- captured the state elections. Many based services"; "school-linked services"; school-linked services arrangements have Continued on page 21 TASK Newsletter, May 2000 PAGE 20 90 SCHOOL-LINKED SERVICES
Reinventing Community in the Age of Globalization Continued from page 20 opportunities for full participation in DREAM mainstream society become possible. TASH members, with their immersion in a variety of service systems, and their IS wide exposure to interdisciplinary programs and professions, are well positioned to become involved with these REALIZED localized adventures in systems change, and perhaps to strongly influence the course of their development. The World Congress & Exposition on Disabilities (WCD), a In St. Louis and elsewhere, families of precedent-setting international conference and trade show students with significant disabilities are three years in the making, will take place at the Georgia talking about exercising the "buyout International Convention Center in Atlanta, November 10- option." Bolstered by a recent federal 12, 2000. The WCD is intended to educate, inform and court decision, this option allows schools provide a useful exchange of ideas for people with disabili- and post-school support systems to come together to re-direct IDEA funds after the ties and special healthcare needs and those involved in their age of high-school graduation to job care and development. Opinion leaders in medicine, educa- training, employment support and tion, research, technology and product development will community living. In the south side of gather along with caregivers and families for an intensive Chicago, Lou Brown, Sharon Freagon learning experience focused on the needs of all people with and their colleagues are extending special education transition and job support disabilities. innovations to all kids, in high schools where the post-school unemployment Seminars on three tracks (Track 1 is designed for physicians, statistics are as high for regular as for OTs, PTs, SLPs; Track 2 is for the education community; and special education kids. Finally, in Kansas Track 3 is designed for direct support professionals, families, City and elsewhere, school-linked services arrangements are helping caregivers and people with disabilities) are being planned to colleges and universities, through student best serve the show's expected 8-10,000 attendees. The participation in interprofessional training entire curriculum has been developed by a Steering Commit- arrangements, to redefine the curricula tee made up of leaders in medicine, science, the government, and field experience requirements for the private sector, non-profit organizations and associations, human services professionals, to begin to prepare a professional workforce for educators and families, and is being produced under the systems of opportunity, rather than auspices of the EP Foundation for Education, Inc., a systems of care. 501(c)(3) non-profit organization.
In addition to the conference program, the event will provide Wayne Sailor is Director of the University an opportunity to examine the latest products and services Affiliated Program for the University of from hundreds of exhibitors. The conference will also feature Kansas, Lawrence Campus. He is a Professor in the Department of Special a career fair, as well as a number of Activity Centers, de- Education, a life-long TASH member and signed as interactive, educational and fun. former TASH president.Wayne can be reached at 785-864-4950 or at w- MARK YOUR CALENDAR NOW FOR NOVEMBER 10-12, 2000. [email protected]. FOR COMPLETE INFORMATION, VISIT WWVV.WCD1EXPO.COM OR CALL 877-923-3976.
PAGE 21 TASH Newsletter, May 2000 THOUGHTS ABOUT SEXUAL ORIENTATION
several girlfriends. After I got involved him the same thing. Most of us felt like with People First, one of my friends told he didn't understand, that he was me she was gay. She had always been real prejudiced because of ignorance, not supportive of me in my personal and because he was a bad person. He must professional life.It took a lot for her to have thought about what we said, trust me enough to tell me. I was not because he became friends with both of shocked. I didn't understand at first them. what being gay meant, but I started asking questions. I tried to figure out As I got more involved in self-advocacy why she told me. She said it was because in Oklahoma, I became more sensitive People First was "making waves" on the about this issue, and saw how people are disability rights front and she was afraid ignorant and prejudiced toward people that we would get attacked through her. who are gay. Once there was a panel on She didn't want us to be shocked if we the ADA, and it included people with found out she was gay, so she told me different disabilities, and one was a gay and my brother about herself. man with HIV/AIDS. After the panel was over, people ignored him. I was the only People are People Later on, I used to worry about her. I one who shook his hand and talked to BY JAMES MEADOURS AND was worried that people might hurt him. BONNIE SHOULTZ her or attack her. I told Bonnie about my worries, and she told me to tell my friend In 1995 I became a VISTA volunteer for Oklahoma People First. In that job, I James Meadours and Bonnie Shoultz how I felt. A couple of weeks later, I did. first met in 1993, at an international She said I didn't have to be worried about also saw the way gay people are treated, self-advocacy conference in Toronto, her. She said, "I am okay," and that and how ignorant and prejudiced people Canada. Bonnie was a national advisor reassured me. At the same time, I got to can be. One time someone (not a self- for Self Advocates Becoming Empoweredknow other gay people. They didn't advocate) said, "I will never see another (SABE) and lived in Syracuse, and James know I knew they were gay, but I figured Tom Hanks movie again," because he was president of Oklahoma People First. it out. I remember one time when one played a person who was gay and had The next year, they met again in Alexan- couple and I were getting ready to go out HIV/AIDS. I said to her, "Why are you so dria, Virginia, at a national conference to eat, and I said, "I just want you guys to accepting of me, as a person with a where James was elected as treasurer of know that I support you and love you disability? Why are you so prejudiced against people who are gay and have SABE. They became friends, and have guys." They were really touched, and had much contact, through many they told me later that they still talk AIDS?" She said, "Because you were meetings, conferences, and phone calls, about that and it makes them feel good. born that way" I said, "I have friends ever since. who are gay and I don't appreciate that." I am not sure when I learned that Bonnie She asked me who they were and I said I James is now Self Advocacy Coordinator was gay.I think it was at my first SABE wouldn't tell her because people like her might hurt them. Then she got quiet and for the State of Louisiana and is based in meeting. SABE had been meeting for Baton Rouge. In 1996, he was elected about 2 1/2 years by then but it was my left. Co-Chairperson of Self Advocates first meeting. SABE and People First of Becoming Empowered and is now Connecticut were putting on a regional Chairperson, assuming that position late conference together, and it was about in 1999 after Tia Nelis stepped down to relationships. Bonnie and another devote more of her time to People First advisor and a People First of Connecticut of Illinois. member did a workshop about being gay. One of the SABE board members got Following are personal perspectives fromupset when he found out they were James and Bonnie about sexual orienta- gay. He told me, "We should kick them tion and relationships between people out as advisors because they are gay" I who are gay and people who are straight. told him, "They are our friends and they support us, and as a national organiza- James: I am fairly young (33) and grew tion we should be welcoming to all up in a conservative family. I did not people. People are prejudiced against know about people who are gay.I just us and we know how that feels. So why assumed that everyone was the same. would you want to do that to them?" I am not gay myself, and I have had Some of the other board members told Continued on page 23 9 2 PAGE 22 TASK Newsletter, May 2000 THOUGHTS ABOUT SEXUAL ORIENTATION
People are People in Seattle.I told her I was really at a was getting ready to move to Louisiana Continued from page 22 crossroads regarding religion, and she for my new job.I remember another told me she was concerned because she time when I was in Washington, D.C. knew how much it had meant to me to with Bonnie. We had some free time, and I started going to the Catholic church be in a church.I asked her if she knew we tried to figure out what to do for fun. when I was 11 years old. My of any churches that are accepting, and I told her I could do movies in Okla- dad's family was Catholic. In Tulsa, the she mentioned the Unitarian church. homa, so let's do something different. We Catholic church became really important When I got home, I asked my co-worker decided to go to an interactive play called to me. I met some really good friends if she knew where there was a Unitarian "Shear Madness" at the Kennedy Center. there, and I did a lot with the church. church in Baton Rouge. She said she I really got into it. We were supposed to But I started questioning my parish's goes to the Unitarian church, and she solve a murder mystery by paying attitude about homosexuality. I heard on invited me to go with her and her family. attention to the clues they gave. One of the news that Disney was offering the characters was a hairdresser who was insurance and other benefits to same-sex It is a really neat, accepting church. gay. During the show, I asked Bonnie partners. Our diocese was debating There is a lot of laughter, it's not always whether that offended her. He was a whether or not the church should sell its serious, and I like that. Now I am stereotype in how he acted and talked.I stock in Disney, and that really disturbed looking for groups at the church that I don't think she had any problem with it. me because the church had always said, could join, like the Social Justice I was glad, because I was having so much "Love one another as yourself," and I felt Committee. We think they need to fun. they should practice what they preach. It know more about people with disabili- seemed hypocritical. The members of ties and other groups. In my mind, people are people. No my church were talking about people matter what race you are, no matter who were gay or have AIDS. I was afraid In New Orleans, I made other friends whether you have disabilities or are gay. to speak up.I thought they might who are gay.I told one friend, who was One of my friends here, who is white, condemn me. I had one friend in the also a colleague, that I would never use just married a woman who is black. He church that I could talk to about that that against her if we had a disagree- is the Assistant Secretary of the Office of issue.I would talk to her a lot about it, ment. She had hinted that she was gay Citizens with Developmental Disabilities. and she would listen.I was testing the one time when I was in the hospital, and One day he beeped me, and I thought waters to see who I could turn to and I mentioned that her lover and she were someone wanted me for official business, picked her.I found out I could trust her, worried about me. I mentioned her but he told me that he and his fiance and I talked more about it. lover's name, which she hadn't men- had discussed it and wanted me to be the tioned, and she said, "Yes." So then we best man for their wedding. I felt really When I moved to New Orleans in 1997, I could talk about it together. It hurts good about that. We are good colleagues decided not to go to the Catholic church. sometimes, because people will attack and now we are becoming good friends. The attitude of the members of my my friends about being gaymaybe they He was always there for me from the time former parish really hurt me, and I might just think they are gay, but they I moved here. In the early days of this couldn't get over my feelings about it.I don't know for sure, and so they will project, I was struggling and he listened didn't go to any church for almost two make ignorant remarks. I just tell them and helped me decide how to make years. A while later, I moved to Baton they shouldn't be prejudiced about things better. He supported me when I Rouge but kept the same job.I was people who are gay.I don't admit that wanted to move to Baton Rouge, talking to Bonnie at the TASH conference my friend is gay, I just talk about the and it is working out really well. prejudice.I want to protect my gay friends because they have trusted me I feel hurt when I realize that people have with that information. to hide their identity because sometimes I feel the same way. People When I meet people, I think that I have a lot of memories of times I have with disabilities hide ourselves, too, they usually know that I have a shared with my gay friends.I was really sometimes. For example, when I am on disability.I don't try to hide itI am touched once when one of my gay the computer in a chat room, I never say proud of who I am, and people friends invited me and my brother, that I have a disability.I want people to seem to be comfortable with me who also has disabilities, to a Christmas react to me the same as they do to and my disability. I want people party where almost everyone was gay.It anyone else. If I were to say that I had a who are gay to feel like that, too, was a great party, really fun. We did a and to feel that they are welcome. disability, I am afraid that some people mystery-type thing, and we went house to house to solve the mystery. It was my last Christmas party with them because I 3 Continued on page 24 PAGE 23 TASH Newsletter, May 2000 THOUGHTS ABOUT SEXUAL ORIENTATION
two weeks before he passed away, in New wish my parents were as supportive as my Pcople arc Pcople Orleans. He was doing a training session Continued from page 23 aunt is. It hurts when that support and for state employees, but I was invited to it, understanding aren't there from the too. That's when we got to know each people who mean so much to you. I other better, because we went out to know how Herb felt. would feel uncomfortable or wouldn't dinner and had a real chance to talk.I know how to deal with it.I remember didn't know that he was gay.1 first Bonnie: I have been an advisor for Self one time I told someone in a chat room learned about that after he passed away. Advocates Becoming Empowered since that I have a disability, and he thought I I wish he would have had confidence in before it had a name, and have been was lying. He accused me of just saying me to tell me that, because 1 wouldn't involved with the movement since 1975. that so the ladies in the chat room would have changed my opinion of him. I came out as a lesbian in 1985, after feel sorry for me. many years as a straight woman. I was At the 1998 TASH conference, Herb's 43 years old at the time, and had many partner, Michael Dowling, accepted an friends with disabilities to do with award for Herb. He talked about their "Coming out helped me to under- whether I should try to hide my new lives together and about how hard it had stand discrimination from the inside identity from friends with disabilities.I been for Herb to let people know he was out.I had already experienced assumed that they might reject me or at gay and had been with Michael for so personal discrimination as a mother least disapprove, and that would have many years.I think he said Herb finally of a child with a disability, but this been very hard to bear. I did tell people did that at a training he did several years was different.I realized quickly that I with disabilities, and others found out ago. I went to the memorial we had for was equally as eager to have my through the grapevine. For the most Herb on the evening of the day Michael friends with disabilities accept me as part, people with disabilities have been talked. It was very powerful. I especially they were for my friendship, and was accepting. All of those I consider my remember Michael talking about how very glad that they did.I have found friends accept me as I am, whether I am disappointed Herb was to find out that that they think deeply about the with a man, a woman, or no one, though his parents had voted against a gay rights issue and want to share their some have had to think about it a great referendum in Maine. It made me think thinking with others." deal because they had been taught to of my own parents, because they aren't Bonnie Shoultz reject and condemn gay people. real supportive of what I am doing in Louisiana. I help people with disabilities Making the decision to be "out" was learn to speak up for themselves, but good for me. It also taught me a great When I meet people in person, I think they don't seem to want to see my world. I deal.I learned that being in the closet is that they usually know that I have a think they are ashamed of me and my difficult mentally and emotionally.I disability, and I don't try to hide it.I am brother Joe, who also has disabilities. learned that if someone was my friend, proud of who I am, and people seem to When I heard the story about Herb's he or she usually appreciated my confi- be comfortable with me and my disabil- parents, I thought they were ashamed of dence in them, and that we became ity.I would want people who are gay to that part of him. Then later, after he closer if I disclosed things about my life feel like that, too, and that they are died, they realized that their shame had just as they did about theirs. And I found welcome. But this weekend, I saw a hurt him. terrible television show that condemned out that because most people with disabilities have many, many interactions gay people and made fun of them, in a Sometimes I don't understand why my with non-heterosexual people (and with religion service. It made me angry to see aunt is so supportive of Joe and me, but people who are racially different from that, and I didn't understand. If the my parents aren't. My aunt is my real them), they have many opportunities to church teaches us to love one another, mother's sister. My mother died when I come to terms with how they feel about how can they make fun of and tease was 17. My aunt went to the Young differences other than those along the people who are gay? Leaders' Conference put on by the ability spectrum. President's Committee on Mental I first met Herb Lovett at the TASH Retardation two years in a row. The first I was single for four and a half years, but conference in San Francisco in 1995. time she was there to see me get an recently began seeing a man. It was We had a chance to talk, and 1 realized award, and the second time to see me much easier for me to tell my friends that he was a neat person. I thought it chair the conference and to see Joe get an with disabilities about this than many of was great that he was finding positive award. I paid her way the first time, and my gay and lesbian friends (and certainly ways of helping people with disabilities she came as my guest. She paid her own so they wouldn't have to depend so muchway the second time. I was afraid to ask on drugs. We saw each other once a yearmy parents to come, because I thought at the conferences, and I also saw him they would say "No, we are too busy" I Continued on page 32 0 el PAGE 24 Li I TAW. Newsletter, May 2000 1999 CONFERENCE EYNOTE 1221)2ESS
Absence of Evidence: Myths Excer ts fr1,.a 19' 9 television program recently called the about Autism and Mental Human Quest. In it, a well known professional was shown testing an 11- etardation Keynote Address: year old labeled with autism. The child Anne ®sinnellan failed a test that a "normal" child of four "If you want to know your myths, show me the would likely pass with ease. The profes- people with whom you associate." sional said (based on this and similar Joseph Campbell tests he had done) that:
Ah, humility. That's a good word to begin "Children with autism are not reading this talk about our field, the field of behavior in terms of mental state. They're developmental disability, of mental not showing any evidence that they retardation/autism. (I'll use these terms possess concepts such as thinking, interchangeably because the labels don't dreaming, imagining; the whole mental really matter for this topic). We should state realm." be so humble and yet we are anything but. One reason is that this field is so Millions of people learned this about dominated by myth. We have so many children with autism. So, let's follow this myths and they are so nested inside of logic. Based on what they don't do, under each other that it was very hard for me to very artificial and contrived circum- pull them apart. I hope I can make it stances, we can say what else these kids clear to you even though they don't wouldn't then be able to say much about can't do, don't know, don't want, and so separate out very neatly. your potential as a tennis player or how forth. In this case, the myththe story best to develop the rest of your knowl- we tellis that they don't possess the We have myths about our vast progress edge and skills. But that's pretty much ability we call "Theory of Mind," they in knowledge and understanding when how our field presently works and it don't possess the concepts of thinking or what we need is humility in the face of works that way because we are still stuck dreaming or imagining. Now, interest- how little we actually know about the with old ideas and myths. ingly, that's not what the people with people we serve. We have a notion that in autism tell us about themselves. The naming something "mental retardation" The entire notion of "measuring" people'sperson with the label of autism in the or "autism" or "cognitive disability" or capacity and labeling and grouping them film A is for Autism clearly has some "severe handicaps" or "developmental based on our results is not a 20th century notion of the thoughts of others about disability"(or whatever our present model. It's a 19th century model that him and how that got in the way of his euphemism to explain or define some- we're still using as we enter the 21st playing with kids: thing we really don't understand) we century and the new millennium. have begun to understand the experience Basically, what we did starting in the "Other kids wouldn't let me join in their of individuals who have that label. On 1800's, a century characterized by game even though I wanted to because top of that we have a myth suggesting imperialism, is that we colonized people they thought I was mad, crazy, because I that in comparing such individuals to with disabilities. In fact, in my state, had tensed up and I had a way of people without disabilities and finding Wisconsin, and others, we literally called flapping my hands and it came across as the many ways they differ from us, we institutions where we incarcerated peopledifferent and kids don't like kids who are have clarified something about them. We with disabilities "colonies" much as different." seem to have forgotten the dictum: nations referred to the places they "Absence of evidence is not evidence of dominated as colonies. And, as with all We talk about children and adults with absence." That is, we have forgotten that imperialistic systems, we developed the label of autism in terms not only of testing somebody and finding what they mythologies around the people whom we their lack of understanding about other cannot do doesn't tell us anything about colonized which helped reinforce the people, but also their lack of interest in what they can do under other conditions idea that they were better off as a result the rest of us. Yet, when they are asked, and doesn't necessarily tell us anything of having us run their lives. like this man, they tell us that they really else about them. Yet, we continue to talk want a connection with others but about people in terms of labels that come It's these mythologies that I'd like to talk couldn't always handle that connection. from testing outcomes as if these were about for a few moments. Many of the Also in the film A is for Autism, Temple real and useful. myths come about because we forgot that Grandin, a Ph.D. who has the label of scientific dictum I mentioned a moment autism, says: Imagine if I tested you in Russian and ago: absence of evidence is not evidence found you could not, at least at that of absence. There was a BrifiAmerican moment, speak Russian. Surely, I 1/41 Continued on page 26 PAGE 25 TAM Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Absence of Evidence: Myths and their inabilities. I hope I don't sound About Autism/Mental too scolding because I know a lot of our Fypieni people Labeled people very good people are here. But even those Retardation Non compliance of us who think of ourselves as good guys Akinesia Continued from page 25 Festination Behavior excess have to examine our own myths, or we Bradykinesia Mental retardation won't contribute to real progress for the Tics Aberrant behavior people that we are supposed to be serving. Obsessions Autistic behavior Often we don't even see the people because we are too interested in We have a major and very basic myth that seeing their behavior and their there is such a thing as autism, there is inabilities. "...Look at them from such a thing as mental retardation, and The very same behavior that might be their terms and you may get some more than that, that we're getting better called for the rest of us, akinesia, or the answers. Look at them from your and better at understanding these things inability to move, would be called non- terms and you will see only what you called mental retardation and autism. We compliance if the person has a develop- want to see." are trapped by our own myths. Let's look mental disability such as autism. at autism. First of all, it's not a thing. Yet, we talk about it as a "thing"(e.g. the child Bradykinesia is another poorly under- "As a child I wanted to feel the comfort of "has" autism) and think that this "thing" stood phenomenon. It's about very, very, being held. I craved tender touching. At the then both defines and explains the very slow movement. It can occur in same time, I withdrew from touch. Being phenomena. So, here's how it works in many neurological conditions. One hugged was like being swallowed by a tidal practice. I've heard this story a million famous story comes from a person with wave." times. Parents bring in a child and tell the post-encephalitic Parkinsonism in Oliver doctor: "My son rocks and he spins and he Sack's famous book, Awakenings. She craved affection like the rest of the echoes and he can't talk or she does this Sometimes he would have his finger babies in the world, but she couldn't and that" and after a suitable amount of under his nose for hours. When he was handle it. We couldn't know that because time pondering, we experts say: "Ah ha! able to speak after being given the drug she couldn't tell us. Donna Williams, This kid has autism." L-Dopa, the doctor asked why he did it. another person with the label of autism, He said "What are you talking about? I suggests this: When the mother and father recover they was wiping my nose!" From his perspec- ask questions such as: "Well, but why is tive, because the effects of the encephali- "Look at them from their terms and you may my child spinning and rocking and tis so changed his perception of time and get some answers. Look at them from your echoing?" And the answer is: "Because he space, he was merely wiping his nose. He terms and you will see only what you want to has autism." How is it that we know he thought it took a second or so. It some- see." has autism? Well, he spins and he rocks times took three hours. So, from the and he echoes and so forth. We don't get "outside view" (our perspective) it was Unfortunately, like all good imperialists, very far past that. We never ask the three hours; from the "inside view" (his we have a tendency to look at events question: "Why does this child rock?" perspective) one or two seconds. primarily from our own perspective and "Or, if he can echo, why can't he talk?" not the perspective of those whom we This is not a small point even though I try Not only do we not consider this possi- have colonized. If you talk to the folks to make it humorous. It is very serious bility, but if a person has a developmental with the disability, (what a concept!) you business because it causes us to look at disability label, we probably don't even might actually find out what's true about people with the label of autism as very see bradykinesia. Yet, there is literature someone. Of course, sometimes you can't different from the rest of us. Then we demonstrating that problems such do it just by talking. Sometimes you have mistake the labels for reality and forget akinesia and bradykinesia are found in to do what Herb Lovett told us to do in that we barely understand the mere people labeled autistic. So we don't stop his last book. You have to be Learning to theoretical constructs or stories that help to think about what it would be like to Listen: If the person communicates us talk about the phenomenon. What struggle with problems such as akinetic differently, you have to listen differently. happens next is that our stories become episodes. And we continue to test and But, we don't do that very much or very common knowledge. Once they are interact with people as if their poor well. Moreover, we tend to believe that if common knowledge, they don't get talked performance were merely a matter of information comes from our research andabout any more but they do get operated poor understanding or lack of coopera- our science, especially if it has numbers upon. Look at the slide at the top of the tion due to their autism or their mental and graphs attached to it, it's more following column: retardation. Then we mistake the data we valuable than if we talk to people. Often accumulate from our specialized, expert, we don't even see the people because we 9 6 are too interested in seeing their behavior Continued on page 27
PAGE 26 TASH Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Absence of Evidence: Myths often recognizably different from a assessment we can come to know and About Autism/Mental football field away. Some of these people understand someone and their experi- Retardation actually think we made movement ence. differences up to explain facilitated Continued from page 26 communication. If we are to make real changes in our field, we have to begin by realizing that In an article two years ago in Mental autism and mental retardation may be professional, objective stance as a special, Retardation, Martha Leary and David Hill how we label their experience, but really expert and privileged kind of knowledge, showed that there were hundreds of it's a label for our experience. For a privileged reality, that helps to explain references to movement difficulties in the example, you all look at this picture the phenomenon that we poorly under- autism literature long before facilitated [there is a slide of a woman sitting in a stood in the first place. communication came on the scene. chair] and you immediately get a sense, a There's also a very good study on autism "hit" about the woman in the picture. In the last two years of this organization's that was just out last year showing that Can somebody tell me what sense you journal, JASH, for example, most of the folks with autism have difficulty with get from the picture? [Responses from empirical articles dealing with disabled action, with moving their bodies. Not the audience: "Sad, depressed, with- participants referred to them by their IQ only are they not well coordinated, they drawn."] Does anybody think this is a scores and/or other test driven labels are quite clumsy. Perhaps the most happy person? [Answer: "No. "] I agree. (example "profoundly retarded") as if interesting comment, however, comes at To me this is not a happy picture. Does these were real and meaningful and the end of the article (and, remember, it's anybody know this woman? [Response, useful. What is that saying to the world a good article). The authors say that "No."[ Neither do I, but I've shown this at large? And, what is that saying to us those with higher I.Q.'s had fewer to about 15,000 people and they almost about our knowledge base? It's saying movement problems which, they sug- all agree with us. We all agree but the that mental retardation is a measurable gest is probably a function of their truth is we don't know anything about variable that helps explain the experience higher intelligence. Now, it seems to me her. What we're doing is assessing our and behavior of the individual. It's that if your ability to move well is a experience, how we would be feeling if something that someone "has" so we say function of your cognitive ability, if I we looked like that. We have to begin to he has mental retardation or cognitive want to find really bright students at the look at things from the experience of the disability. (By the way, it is also some- University of Wisconsin I should go other person. The only people who have thing that never leaves the person. I have straight to the football team! They're ever given me a different answer are never heard the sentence, "the formerly certainly moving well; they're even people with developmental disability retarded Mr. Jones.") It explains why moving to the Rose Bowl this year. labels who say things like: "Maybe she's somebody can't learn. It explains why our watching TV;" or, most recently, "She's programs fail and it explains, for my With every part of our received knowl- listening to the wind coming through the purposes, since I'm very interested in edge base we should do what my col- window" We have to start being honest movement differences, why they move league, Michael Apple, says. We must differently. and humble about the fact that we are "question the unquestionable." We must very limited in our ability to assess question the very roots of our field. One people with severe communication Movement differences or sensory- of those roots comes from the hierarchial difficulties. Instead of getting better and movement problems include difficulties models of the brain from a century ago better at knowing them with our tests in starting, stopping, executing, continu- which suggested that the "smart part" of and checklists we may be merely getting ing, combining movements of perception, our brains, that part which we do not better and better at agreeing with one emotion, action or posture or thought as share with the animals and which made another. Martha Leary and I explain in our book our brains so big, is in charge of the rest on the topic. Some people argue that of the brain and body. Thus, if your body In the same way, we have consensus that folks with autism don't have problems in isn't working right, it's because there's autism/mental retardation are mind movement, even motor action. Rather, something less smart about you! We are phenomena alone, that is, psychological some professionals claim that individuals so used to the idea that we never chal- and cognitive. Also, that somehow the with autism are remarkably well coordi- lenge it and, more important, we have minds and bodies of these folks are not nated physically despite the fact they are ceased to look for the real relationship connected except in some mysterious between movement challenges and the way so that the less smart you are, the If we are to make real changes in our field, ability to score well on our IQ tests, less able you are to make your body we have to begin by realizing that autism and never mind the ability to perform well in work. So sure are we of this fact that we mental retardation may be how we label their every day life. All this mythology believe we can assume that lack of experience, but really it's a label for our experience. contributes to the notion that we can assess objectively and, moreover, in our Continued on page 28 PAGE 27 9 7 TASH Newsletter,May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Now, it would be funny if we didn't really Absence of Evidence: Mythsgence resides? In the head, of course. So believe it. We talk about intelligence and they measured heads for 30 years to show knowledge in terms of capacity and levels About Autism/Mental that they were more intelligent than other, as if we were filling somebody up. We talk Retardation lesser humans. These were not a fringe about stages as if you actually get some Continued from page 27 group of individuals. Very famous people place, some real space, or platform, or did this work. They dug up famous point or that we arrive at some develop- response on tests is due solely to mind people, filled their skulls with sand, mental destination and are then able to problems. measured the heads of smart and not so continue the journey to the next stage. smart people who were alive and came up There is no such thing as a real stage of Mental measurement started in the with all kinds of numbers. It didn't work, development, of course. It comes from a middle of the 19th century as a reaction of course. Their problem was that some 19th century idea stressing the disconti- to Darwin; to the notion that somehow black people had big heads and some nuity between ourselves and other we were connected to the rest of the women had big heads and some very primates. But, the idea was picked up animal kingdom in some evolutionary smart folks had small heads. It didn't immediately by psychoanalysts. And then way. work, but they kept doing it and when by those who saw themselves as the they finally gave up on that version of the scientists of measurement. We'll get to measuring intelligence enterprise, in flew that in just a moment. the I.Q. model to take its place. Meantime, in discussing IQ we must IQ tests are founded on the same premise. recall those who picked up on testing That is, that intelligence is a thing which and measurement and other awful ideas can be measured within a hierarchical, to try to keep the hoards of immigrants linear model, and talked about in terms offrom coming into the country. In the space and distance and length and United States we really bought into the capacity of filling up an empty space. It's IQ story big time. It was built on a very as though the glorious human intellect, racist model that assumed that the other knowledge and development were a races were an earlier stage of develop- The original name for the idea of evolu- matter of filling up vessels or crocks. So, ment, were inferior and measurably so. tion was development. But, from this Those who remember the recent ballyhoo reaction to evolution came the notion that over the book The Bell Curve must surely there were stages of development or realize that we are still living with the evolution. Moreover, that evolution was 5,1 D I S r121 t5u ri racist legacy of the crock model. We still for the purpose of getting to perfection, are living with the notion that there is which is this last person here, who is nogo such a thing as measurability of intellect white, Anglo-Saxon, upper middle class, Mfenhze that you can measure a concept! And educated, money owning, property eaexciried- that, at least in terms of those we label as owning, and male. This is not really a mentally retarded, there are those who true depiction of Darwin's theory, of can be shown to be not quite human, but course, but this is what was believed pre-humans who fail to come up to our because it helped people handle the very in this slide there's the normate there in standard. That's a very important notion notion of evolution. Again, remember the middle and there's the retardate down in the underbelly of our field. In fact, this is the age of imperialism. They here and as you can see the crocks get people who we would today call severely absolutely believed in hierarchy. If there smaller and smaller as we get into the and profoundly disabled in the 19th was to be a connection to the rest of the "retardation" range. This is the crock century were considered the living phylum (a direct line of descent within a model of development. It's the crock archeological record of pre-human group), it had to be a hierarchical rela- model of human diversity. It is a crock. existence. An interim stage in evolution- tionship. According to Stephen J. Gould's ary history. Throwbacks. Back then they wonderful book, The Mismeasure of Man, were even categorized by Langdon Down one of the things the white, educated, as representative of a more primitive upper middle class, rich, propertied men race, the "Mongoloid" race. We are not did to prove how much superior they so many years away from the term were to other creatures is to say: "let's Mongoloid and, more to the point, we measure intelligence." If intelligence is have institutionalized many of these the thing, and it must be because we gave biases and beliefs in our present day it a name and know its real, it must reside attitudes, as we can see in this slide. As some place. Where do we think intelli- Continued on page 29
PAGE 28 TASK Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Absence of Evidence: Myths what developmental stages equate to About Autism/Mental normal and how far the "autistic" or Retardation "retarded" are from normal. In fact, our model and our data base is actually very Continued from page 28 inadequate. So, even while we congratu- late ourselves about all the things we've Bob Williams suggests, the result is: "We done and we are doing very good things have severe ignorance and profound certainly many people in this organi- misunderstanding." zation are doing very good things with supports and getting funding and Sue is just the exception. She's not like the programs and so forth we really don't people we work with. Don't get me wrong. Iknow who the people are that we're don't think all the people we work with cantalking about. Its time we start under- get 725. At least one of us at this micro- standing the people whom we label as phone couldn't get anything like 725 on having a development difference or the math SAT. But I'm smart enough to cognitive disability. There is a lot of know that we have woven so many myths literature out there to help us learn more. into our profession that soon we'll have to I will talk about this for only two do our work on a combination word minutes. If you miss it, don't worry. I'm processor and food processor in case we editing a new book with Michael Weiss I'd like now to show a tiny little piece of have to eat our words. Alternatively, we canfor Academic Press in which we will have tape of Sue Rubin. Sue Rubin was a stop and say: "A lot of this story we tell is aa meeting of the minds the best thinkers keynote speaker here at TASH last year crock and it isn't working." We can no in autism with the most cutting edge and I just want those who weren't at the longer pretend to know and understand thinkers in child development. We call conference to see and hear her for just a people who are labeled by comparing the book Autism and Pervasive Develop- moment. them to us "normates" as we've been doingmental Disorders: Shifting Paradigms and for 150 years. Certainly, I'm not suggestingNew Perspectives and expect to get it out Sue Rubin on tape: "I'm interested in mental that people with disabilities are really in 2001...a date that seems appropriate retardation and autism. My interest stems "OK." Of course many people have for the topic! from the fact that until I was 13, I was thought significant problems. My point is that we to have an I.Q.of 24. I am presently a senior are not getting better at understanding the There are new paradigms of development at Whittier High School with a GPA of 3.85. problems of each unique individual or and we must begin to incorporate these Clearly, something is amiss." accommodating them. Moreover, I am into our knowledge base. There's nothing saying we cannot continue to do and say wrong with the Applied Behavioral Today, Sue is actually a student at and write things which contribute to the Analysis approach, but it cannot continue Whittier College with a GPA of nearly notion that these are less than human to be the major and dominant scientific 4.0. She types with facilitation. She also beings who deserve attitudes or treatment paradigm of our field. It's inadequate. It's often types independently. She ought to that we would not tolerate for ourselves, not good enough. It's a good tool that cause us to ask: "What exactly is mental our loved ones or our fellow humans. helps at times but explains very little. retardation?" At the risk of offending, I We have to stop thinking of people as want to say that when I was at TASH last As a case in point, this is picture of a computers that we're filling up with data year and Sue presented and indepen- shock device, a cattle prod. One state is and programming. We have got to start dently answered questions, yet "looked" now advertising that, as part of a training thinking in terms of the chaos theory (or for all the world as if she were a person program, they can provide "a fun filled bio-dynamical systems) which has begun with an I.Q. below freezing, when she let day" and a lot of food and teach you to to document the complexity of the us know that she got 725 on her math use this kind of remote control cattle prodhuman development. The human brain is SAT's and a scholarship to college, I don't against people with disabilities. The slide the most complex object in the universe. know why the entire audience and the comes from a flyer for a device upon It doesn't necessarily become less entire TASH organization didn't rise up which the newer shock delivery devices complex by virtue of a developmental and say: "What are we doing?" "What arewere based. It says under the picture of a difference. Yet, we talk about it as if this we talking about?" "What is it we little girl wearing the device: "This not were so. I believe we thought they [the actually know about the people we claim offered for sale to control people." No. children and adults that we support] were to represent?" Only those with disabilities. simple-minded so we created simple- minded explanations. Instead, many left that talk unconcerned, Okay, let me sum up this part. What we perhaps comfortable with the notion that think is that we know what normal is and Con'tinued on page 30 Sy PAGE 29 TASH Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Absence of Evidence: Myths sit up. Yet they are able to learn to walk, Dr. Tom Riese says: "I just was very deter- About Autism/Mental ride a bike, tie their shoes, do gymnastics mined to find out what was unique about stairs Retardation and swim. Note, they are actually two that allowed one to walk that was different little girls who share the lower part of a from the rest of the environment and I Continued from page 29 body. Each has a brain that operates with experimented with simulated stairs with half the body. They are a unique self- objects, first,large objects then progressively organized system just like the rest of us smaller objects. It finally got down to the point In a new paradigm we acknowledge that and just like everybody we represent who where I could use pennies and dimes and tiny there is no hierarchy for how body and has a label. little marks on the floor to simulate objects brain work. There is no conductor up and that was having the same effect as the there. The cortex, the "smart part" of the To sum up, learning is development; it stairs." brain, is not in charge, is not running the doesn't wait for development. What we show. The individual is a self-organized do is bring forward softly assembled Narrator: It is a kind of trick the eye plays on dynamical system and the brain is part of bundles of abilities/knowledge/skills at the brain allowing it to tap into a more that system with all parts working in any given moment depending on the primitive form of behavior. Only when the concert, sort of like a jazz ensemble context. And context is everything. As pattern was extended into space could the which has no conductor. And, if you haveGregory Bateson told us, context is not patient walk again." a very unusual developmental history it's just what's left over when we pull out the going to work but its going to work in part that we want to study. It's everything. The doctor goes on to say: "I would love to very unusual ways and the rest of us are It's your history. It's that person's history. shop at Safeway because they have the 12x12 going to have to begin to understand It's that person's body. It's what's happen- inch linoleum tiles and I could use that as a those ways. To do this we have to start ing in the room at that instant and what grid and those kinds of environments are including the work of people like happened a moment ago. This is in large wonderful. They're not universal." Edelman and Thelen and Kelso into our part Esther Thelen's work and these are literature and into our field. They can her words: Narrator: "Unable to sleep at night or walk help us understand that development without over medicating himself with the drug doesn't follow a single predictable course. "Action cannot be separated from L-Dopa, Riese became obsessed to find a way It has to happen online, with experience, perception from the bio-mechanics of the to permanently extend those life saving in the moment. The genes can constrain limbs and from the nervous system patterns." development but it is what happens which generate the control of movement. during development that drives develop- Likewise, perception and action form the The doctor then discovers glasses that ment. Development occurs in context. basis of cognition and are inextricably operate on the principles of virtual Knowledge is flow as you move from implicated in social and emotional reality. context to context. You have softly development." assembled bundles of abilities, knowl- Dr.Tom Riese: "I read about this product and edge and skills and you bundle and Now we will put on the film so you can I realized that one could superimpose imagery rebundle them as the context changes see just how complex and dynamic this onto reality without obliterating reality which and makes them useful for you. story really is. The film is of a person, Dr. was an important distinction. One could see Tom Riese, with a condition called the real world and one could effect it by What it means is that, quite literally, "Parkinson's Disorder." He is a physician. putting objects onto the ground in front of every child is unique, every word is He was 35 years old when he developed oneself. When one is akinetic, there is not just unique, every movement is unique. Parkinsonian symptoms. Sometimes he the lack of walking. There is a whole spillover Replication is impossible. We can try but cannot move. Listen to what he says on effect of problems. One is stiff. One has the we can't really replicate. And we can't the film about when he's akinetic. He tellsfeeling of being under water. One's mental assume that ability or lack thereof in one us that akinesia is not just not being able acuity seems to deteriorate." (Emphasis context is evidence of lack of other to physically move, but one's cognition added). abilities or lack of ability in all other changes and one's ability to interact and contexts. As an example of uniqueness, so forth. Narrator: "When the VR sports glasses were and of the fact that there is no genetically modified. they simulated the effect called pre-determined preprogram or course of Narrator of the film: "As he tried to Kinesia Paradoxa, paradoxical movement. development, consider these two little understand the riddle of his disorder, he What Tom Riese saw when he put on the glasses girls from Minnesota who are conjoined experienced the well known effect of kinesia was a series of moving objects projected twins. How could you possibly have a paradoxa. By following a pattern of objects infinitely into space." The film then shows preprogram for development in con- like stairs, he could temporarily escape the the doctor walking almost effortlessly. joined twins? These girls were not halting gate so typical of Parkinson's called predicted to be able to do anything, even Akinesia." Continued on page 31 100 PAGE 30 TASK Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
testing them in ways that completely Absence of Evidence: Myths Shifting Paradigms and New Perspectives. distorts the context in which they were NY: Academic Press. About Autism/Mental able to use words in the first place. We Retardation don't know what will work for any given Donnellan, A. M., & Leary M. R. (1995). Continued from page 30 person, but we've got to start by trying Movement differences and diversity in lots of things and looking at people in autism/mental retardation. Madison, WI: context one person at a time. DRI Press
Dr Tom Riese: "When one walks with the If we don't start examining our myths, Donnellan, A. & LaVigna, G. (1990). [virtual reality perceptual] cues, all that lifts we'll end up just living with our myths Myths about punishment. In A. C. Repp and melts away. It's not just gaining the ability and misconceptions and make no real & N. N. Singh (Eds.), Perspectives on the to walk, it's gaining these other spillover effects change in how we know and feel about use of nonaversive and aversive interven- which are very, very liberating." people. It doesn't matter if we use the tions for persons with developmental autism word, the mental retardation label disabilities (pp. 33-57). Sycamore, IL: Dr. Riese's experience is the living or some other euphanism as long as our Sycamore Publishing Co. embodiment of a new axiom: "We cannotattitudes are limiting people. And they move without perception, we cannot are. I can speak for myself; mine certainlyDonnellan, A. M. (1999). Invented perceive without movement." It's all part are. And as long as our attitudes go knowledge and autism: Highlighting our of a new paradigm of the biodynamics of unexamined, the people we represent are strengths and expanding the conversa- development and we must begin to in trouble. We have to stop thinking tion. Journal of the Association for understand what it means for individualsabout mind and intelligence in terms of Persons with Severe Handicaps, 24(3), with significant developmental differ- space, a crock, a thing with size, as 230-236. ences. What we are beginning to know something that we have or don't have, from new research is that knowledge/ program or fill or don't fill, or can only Donnellan, A. M, Mirenda, P L., Mesaros, skills/behavior are softly assembled fill so much or in a certain prescribed R. A., & Fassbender, L. L. (1984). bundles that appear or disappear in way. Analyzing the communicative functions context. So, for example, here is my of aberrant behavior. Journal of the friend, Aaron Ulrich, whose mom, Mary, That's our job. Let's do it! Thank you. Association for the Severely Handi- is here, a former board member of TASH. capped, 9 (3), 201-212. This is his signature. This is his signature ******** on the bottom, three minutes later when Edelman, G. M. (1992). Bright air, he used the little squiggly pen that gave REFERENCES: brilliant fire. New York: Basic Books. him a vibrating feedback as he wrote. Ghaziuddin, M., &.Butler, E. (1998). [Signature went from large scrawl to Bateson, G. (1972). Steps to an ecology of Clumsiness in autism and Asperger being neat, clear and appropriate size]. mind. New York: Ballantine. syndrome: A further report. Journal of Now, I'm afraid that Special Ed will say Intellectual Disability Research, 42, 43- that it's the model for everybody. SquigglyBlakeslee, S. (1999, January 26). Move- 48. pens are the next cure. No, don't do it. ment may offer early clue to autism. Don't buy squiggly yet. I'll make special New York Times, p. D3. Gleick, J. (1988). Chaos: Making a new educational squiggly pens and make a science. New York: Penguin. million dollars. I'm joking, of course. TheBritish Film Institute (1992). A is for point is: The pen works for him in that Autism. Fine Take Production for Gould, S. J. (1981). The Mismeasure of context. That's all we can say besides Channel 4. Available through National man. "Maybe it will work for someone else in Autism Society, London, U.K. some context," but not automatically just Guess, D., & Sailor, W. (1993). Chaos because he and someone else share the Damasio, A. R. (1994). Descartes' error: theory and the study of human behavior: same label or accumulated the same Emotion, reason, and the human brain. Implications for special education and number of IQ points. New York: G.P. Putnam. developmental disabilities. The Journal of Special Education, 27(1), 16-34. Similarly, maybe everybody doesn't need Danforth, S. (1997). On what basis hope? just pictures on their communication Modern progress and postmodern Jacobson, J. W, Mulick, J.A., & Schwartz, board. Lots of people can use words to possibilities. Mental Retardation, 35 (2), A.A. (1995). A history of facilitated communicate and lots of people can use 93-106. communication: Science, pseudoscience, the alphabet. Maybe not everybody. But and antiscience. American Psychologist, some people and many we never ex- Donnellan, A.M. & Michael J.S. Weiss 50 (9), 750-765. pected. And we won't know who's who (Eds.) (in preparation) Autism and by giving them standardized tests or by Pervasive Developmental Disorders: Continued on page 32 PAGE 31 1 0 1 TASH Newsletter, May 2000 1999 CONFERENCE KEYNOTE ADDRESS
Absence of Evidence: Myths About Autism/Mental Williams, D. (1995a). Like Color to the People are People Blind. New York: Times Books.Arlington, Continued from page 24 Retardation TX: Future Education Inc. Continued from page 31
Young, S. R., (1998). Autism and I.Q. easier than talking about it in the Unpublished manuscript, University of TASH Newsletter!). One of the most Wisconsin-Madison. difficult things was having to rethink my assumptions about what "group" Mulick J. A., Jacobsen, J. W., & Kobe, E H. I knew intellectually that (1993). Anguished silence and helping I belong to. hands: Autism and facilitated communi- all categories are socially constructed, but having lived as a member of two cation. Skeptical Inquirer, 17 (3), 270- categories (straight and lesbian), I 280. have felt the effects of self-labelling as well as labelling by other people, and Leary, M. R., & Hill, D. A. (1996). Moving on: Autism and movement disturbance. I felt that I belonged with the queer Mental Retardation, 34 (1), 39-53.Maurer, Anne Donnellan is a Professor in the (or gay/lesbian/bisexual/transgender) community. Luckily for me, the R., & Damasio, A. (1982). Childhood School of Education at the University queer community is increasingly autism from the point of view of behav- of Wisconsin, Madison. including people who identify as ioral neurology. Journal of autism and bisexual as well as transgendered Developmental Disorders, 12, 195-205. people. People in Motion: Redesigning the human machine.(1996). Films for the Coming out helped me to understand discrimination from the inside out.I Humanities and Sciences. NJ: Princeton. had already experienced personal discrimination as a mother of a child Rimland, B. (1993). Editor's notebook. with a disability, but this was differ- Autism Research Review International, 7, TASH wishes to ent.I realized quickly that I was (3). acknowledge the equally as eager to have my friends Sacks, 0. (1989). Neuropsychiatry and generous support of our with disabilities accept me as they were for my friendship, and was very Tourette's. In Mueller (Ed.), Neurology newest lifetime member and psychiatry: A meeting of minds (pp. glad that they did. I have found that they think deeply about the issue and 156-174). Basel: Karger. want to share their thinking with others. James approached me about Sacks, 0. (1990). Awakenings (6th ed.). Kathleen B. Boundy this article, for example, and after he New York: Harper Perennial. Boston, Massachusetts and I agreed to write it, two of our other friends on the SABE Board also Schwandt, T. A. (1996b). New songs of innocence and experiences (With Lifetime membership en- wanted to write.I have also found apologies to William Blake). In L. that I deeply respect the process my titles you to full interna- friends with disabilities have used to Heshusuis & K. Ballard (Eds.), From tional and chapter member positivism to interpretivism and beyond: come to their conclusions. Tales of transformation in educational benefits for your lifetime. and Social research (The mind-body The cost can be remitted As James said, "People are prejudiced connection) (pp. 155-160). New York: over several monthly pay- against us and we know how that Teachers College Press. feels. So why would you want to do ments. that to them?" Strandt-Conroy, K. (1999). Exploring If you are interested in movement differences in autism through first-hand accounts. Unpublished doctoral becoming a lifetime member Questions or requests for additional dissertation, University of Wisconsin, of TASH, contact Rose information may be addressed to the Madison. authors. Contact James at 225-927- Holsey at 410-828-8274, 0855 or Bonnie at 315-443-4323. ext. 100. OOOOO Thelen, E. (1995). Motor development: A new synthesis. American Psychologist, 50 (2), 79-95. 1 rl PAGE 32 TASH Newsletter, May 2000 laM7013R74 4© =NM ag4OWITTV
Background and Concepts It is amenable to instruction and learning. ebster's New World dictionary Statutory definitions of capacity to defines consent as "to give consent vary widely from state to state, assent or approval." In the but generally include understanding the context of sexuality and persons with Individuals with physiological nature of the act and/or cognitive disabilities, the issue of consent understanding the moral nature of the act is clearly intertwined with the legal Significant (Slavis & Walker-Hirsch, 1999). issues of competence and protection Disabilities and from abuse and exploitation. The latter Finally, situational considerations are point is especially critical when we Consent to critical to analysis of the need for consider the fact that solicitation for Sexual Activity external interference (i.e., control by prostitution is one of the most common parent, guardian, agency or court) in the crimes with which persons with develop- individual's freedom to consent (or to mental disabilities are charged and sexual deny consent). The AAMR (formerly the abuse of persons with developmental American Association on Mental Retarda- disabilities is a pervasive social problem. tion) published a small text entitled A The court in Gray v. Grunnagle (423 Pa Guide to Consent in which Slavis and 144, 1966) defined consent as Walker-Hirsch outline the situational "... an act of reason, accompanied with aspects of consent to sexual activity. deliberation, the mind weighing as in The complexity of consent is further According to Slavis and Walker-Hirsch, balance the good and bad on each side. It multiplied by the vagaries of law. Accord- professionals must develop a balance means voluntary agreement by a person ing to Mezer and Rheingold (1962) there between traditional roles as protectors of in the possession and exercise of suffi- are over 100 legal definitions of compe- persons with developmental disabilities cient mentality to make an intelligent tence. Determinations of competence are and their more contemporary roles as choice to do something proposed by influenced by age, physical and mental advocates for the right to exercise choice. another...." capacity, and situation. This balance is ever-changing because of changes in mores, laws and knowledge Lest we view persons with disabilities Obviously, the age variable in compe- about the ability of persons with develop- only as the objects of sexual offers, sexualtence to consent is determined for the mental disabilities to make reasonable consent must be examined in three most part by statutory law. Thus, states choices. forms: (a) the right to say no to a request promulgate standards for the age of from another, (b) the right to say yes to a consent. The second concept capacity The right to make choices about sexual- request from another, and (c) the right to is ever changing because better and ity and sexual expression is interpreted as initiate a request. The three aspects may more effective education, combined with a privacy right from the Bill of Rights. be viewed in an educational and develop- opportunity to practice decision-making, Furthermore, the AAMR 1992 redefini- mental sense. First, individuals learn howhas resulted in higher estimates of tion of mental retardation emphasizes the to protect themselves from predatory, capacity. This change is evidenced in the need for varying levels of support to inappropriate or undesired advances. abrogation of statutes that formerly move individuals toward greater au- Second, individuals learn about entering permitted wholesale sterilization of tonomy. Thus, capacity to consent is into voluntary relationships that may classes of citizens (persons with mental dynamic, situational and modifiable. have sexual elements. Finally, individuals retardation, epilepsy and other disabili- Slavis and Walker-Hirsch provide a learn how to initiate interpersonal ties) merely because they belonged to the hierarchical analysis of sexual situations relationships that may have sexual class. elements. Today, it is unlikely that a statute would Professionals, family members and Consent includes three components (a) stand the tests of discrimination on the persons with developmental disabili- ties who seek to improve capacity to knowingness having sufficient informa- basis of disability if it automatically tion about the nature of the proposal of consent and, hence, expand the array permitted denial of self-determination of sexual experience must realize that the other, (b) voluntarinessabsence of rights to a class of citizens (i.e., those development of capacity to consent coercion either positive (unreasonable whose IQ is below a predetermined begins in infancy.It arises from inducement) or negative (threats of loss), cutoff). Capacity decisions are more experience, experimentation, explicit and (c) competencethe ability to use appropriately made on the basis of the instruction, incidental learning and the knowledge and consider outcomes individual's experience, history and the positive reinforcement of success (potential consequences and strategic performance in the face of similar and the lessons of failure and opportunity to try again. thinking about short and long-term consent demands. Furthermore, determi- possibilities) (Burgdorf & Spicer, 1983). nation of capacity to consent is temporal. Continued on page 34 PAGE 331 03 TASH Newsletter, May 2000 (CDR7013R74 40 OPIZU/:\R, Lig4D'UO717
Individuals with Significant reduction of STD risks. Capacity is also In contrast, some individuals may never Disabilities and Consent to related to understanding the legal demonstrate the behaviors indicative of Sexual Activity restrictions placed on sexual intercourse. responsible sexuality. They may engage These include sex for compensation in risky behavior although they under- Continued from page 33 (prostitution), pedophilia (sex with a stand the risks or they may never fully minor), involuntary sex (rape and understand the risks. assault), public sex (indecent and lewd upon which differential standards for behavior ), and statutory restrictions on Professionals, family members and capacity to consent may be based. At the sexual relations with a person who persons with developmental disabilities lowest level are those activities that are doesn't have the capacity to consent. who seek to improve capacity to consent not generally regulated. This includes and, hence, expand the array of sexual solitary activities (masturbation and Assessing Cgapaeily to Consent experience must realize that development access to certain erotic material) and pre- Slavis and Walker-Hirsch offer a list of 23 of capacity to consent begins in infancy. sexual activities such as dancing and dimensions on which capacity to consent It arises from experience, experimenta- friendship. should be assessed. They include: tion, explicit instruction, incidental knowledge of sexual activities, under- learning and the positive reinforcement The issues for professionals at this level standing of wrongful sexual behavior, of success and the lessons of failure and are appropriateness (e.g., public mastur- understanding of rights, understanding opportunity to try again. Thus, it would bation) as opposed to potential for harm. of consequences of sexual behavior, be foolish to develop a capacity/consent At this level, familial and professional understanding of mutuality, ability to curriculum that is implemented only intervention is appropriately limited to seek assistance and understanding upon attainment of adolescence or teaching the appropriate choices for time,appropriate context for sexual behavior. adulthood. On the other hand, to expect place and circumstances. At the next The reader is directed to the discussion sexual competence to arise in the absence level are activities that involve mutual in the Slavis and Walker-Hirsch chapter of instruction is even more imprudent. consent, for example, activities such as for more details. petting and sexual stimulation by Schweir and Hingsburger (2000) describe another. At this level, the appropriate Pra3st7___szmiinnin for Ca p is ty to the development of sexual competence role of professionals includes the instruc- Consent for persons with intellectual disabilities. tion in the aforementioned appropriate The text is specifically designed for choice for time, place and circumstances parents of persons with intellectual and the development of understanding of disabilities, but the content is at least mutuality. The latter point is critical and Consent to sexual activity is a partially adaptable to professional mutuality requires an understanding that complex legal, social, behav- instruction. Their text progresses through both persons enter into the relationship ioral and instructional issue. developmental experiences that enhance freely, may withdraw freely, and that Professionals, parents, and sexual competence and hence capacity to neither has the right to offer inducement persons with developmental consent. Topics include modesty, peer or threaten harm as a means of initiating disabilities who are interested pressure, homosexuality, abuse, saying or sustaining the relationship. in improving capacity to consent should include family no, marriage and family, and financial and legal consequences. At the highest level of consent are those members and persons with activities for which potential outcomes developmental disabilities in the develop- Not all persons with intellectual disabili- threaten safety. The primary activity at ties have had the opportunity to develop this level is sexual intercourse. Potential ment of policies, curricula and implementation. sexual competence through a natural damaging outcomes include pregnancy, developmental process. In fact, based sexually transmitted diseases (STD), and upon widely reported criminal statistics, criminal charges (for prostitution, we know that persons with intellectual pandering, rape, and assault). At this The capacity to consent is developed disabilities are often prosecuted for level, professionals and family members over an extended period of time. For sexual crimes that indicate lack of sexual must consider appropriate choice of persons who do not have cognitive competence(see for example, Shapiro, circumstances, mutuality, and the ability disabilities, the legal assumption is that 1986). Thus, more formal programs are to act safely and legally. The last two the capacity is developed upon reaching required and it is beyond the scope of components, safety and legality are most the age of majority (generally 18). this article to detail such programs. The complex. Therefore, capacity to consent Obviously, some individuals may achieve content is relatively easy to identify. The to sexual intercourse is measured by the the capacity (meaning understanding) to individual's demonstrated behaviors consent earlier than 18. However, the related to appropriate birth control and law provides few exceptions (marriage): Continued on page 35 1 0 4 PAGE 34 TASK Newsletter, May 2000 !0L:90131X14 VC) =gal, agumwouu
Individuals with Significant surgery. The culminating exchange in the Mezer, R. & Rheingold, P (1962). Mental Disabilities and Consent to hearing was one in which the attorney capacity and incompetency: a psycho- Sexual Activity for the sister attempted to downplay logical problem. American Journal of Linda's apt responses by asking her if she Psychiatry. 118, 827. Continued from page 34 had been coached. Linda's response was, "I have been taught, and I have learned." Shapiro, S. (1986). Delinquent and aforementioned list of 23 areas provided Linda's emancipation was granted. disturbed behavior within the field of by Slavis and Walker-Hirsch is certainly a mental deficiency. In A. V. S. de Reuck & good foundation for a curriculum. Conclusions R. Porter (eds.). The mentally abnormal However, good content is a necessary but Consent to sexual activity is a complex offender. New York: Grune & Stratton. insufficient condition for development of legal, social, behavioral and instructional capacity to consent. Additional essential issue. Professionals, parents and persons Stavis, P.F. & Walker-Hirsch, L.W. (1999). conditions include opportunities to with developmental disabilities who are Consent to sexual activity. In R.J. practice newly learned behaviors in interested in improving capacity to Dinerstein, S.S. Herr, & J.L. O'Sullivan appropriate contexts and assessment of consent should: (Eds.) A guide to consent (pp. 57-68). understanding. Obviously, privacy needs Washington, DC. : AAMR. preclude direct observation and feedback 1. Understand the legal nature of con- and some individuals may choose not to sent. Schweir, K.M. & Hingsburger, D. (2000). engage in sexual activity. Discussion of Sexuality: Your sons and daughters with situations, group analysis of appropriate 2. Understand the differing situational intellectual disabilities. Baltimore: responses to sexual situations and demands for capacity to consent. Brookes. individual follow up to difficulties are effective procedures. 3. Teach sexual competence throughout development. Over the past 30 years, the authors have James K. McAfee Ph.D. is Professor had the opportunity to be involved in 4. Understand that risk must be balanced in Charge of Special Education several programs designed to promote with opportunity to grow. Programs The Pennsylvania State self-determination. In one such program, University University Park, PA. Dr. Linda, a 32 year old woman with a mild 5. Provide increasingly complex opportu- McAfee's main interests are disability intellectual disability sought emancipa- nities for choice. law especially in the area of criminal tion from a program and from a guard- justice. He provides training to ianship that had been enacted during her 6. Provide opportunities for feedback and persons in law enforcement about early adolescence. At a competency analysis of choice including legal, disability issues such as victimiza- hearing, her sister (who was her guard- financial, and strategic consequences. tion, competence to stand trial, and ian) challenged Linda's capacity. The cooperation between law enforce- primary point of contention was Linda's 7. Maintain documentation of criteria ment and special educators. capacity to consent to sexual activity. used to determine capacity to consent. This was especially critical because Linda Pamela S. Wolfe is Associate Profes- had announced intent to marry. Linda's 8. Maintain documentation of interven- sor in the Department of Educa- responses to the judge were articulate, tion and educational efforts. tional and School Psychology and specific and to the point. One question Special Education at The Pennsylva- put to her was, "What will you do if you 9. Include family and persons with nia State University in University become pregnant?" Linda's response developmental disabilities in the devel- Park, PA. shocked most of those in attendance. She opment of policies, curricula and stated, "That is not a concern because myimplementation. Questions or comments concerning sister had me sterilized when I was this article may be addressed to Dr. fifteen!" A check of medical records References McAfee at 212A CEDAR Building, indicated that Linda's response was Penn State University, University accurate. Her response also indicated Burgdorf, R.L. & Spicer, P.P. (1983). The Park, PA 16802, [email protected], that she had knowledge of her own legal rights of handicapped persons. (814)863-8002. sexual situation beyond that which Baltimore: Brookes. others anticipated because to the best of our knowledge, none of the professionals Dinerstein, RJ., Herr, S.S., & O'Sullivan, working with Linda were aware of her J.L. Eds. (1999). A guide to consent. state. Linda's sister testified that she had Washington, DC: AAMR. never told Linda about the purpose of the 105 a PAGE 35 TASH Newsletter, May 2000 TASHGJDT9gEOULD
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board Kathy Boundy diversity and quality of life for children and adults with disabilities. Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Liz Healey, President members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President Bob Kafka torial judgement in selection of materials. Donna Gilles, Chair of the Executive Committee Jay Klein All contributors and advertisers are asked to abide by the TASH policy on the Liz Obermayer, Secretary Debra Kunz use of people-first language that emphasizes the humanity of people with dis- Joe Wykowski, Treasurer Ming-Gon John Lian abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Tia Nelis individuals" refer to characteristics of individuals, not to individuals themselves. Jacki Anderson Jorge Pineda Terms such as "people with mental retardation," "children with autism," and "in- Barbara Ransom dividuals who have disabilities" should be used. The appearance of an advertise- Michael Auberger ment for a product or service does not imply TASH endorsement. Linda Bambara Patrick Schwarz Wanda Blanchett Jacqueline Thousand INFORMATION 1
Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: Is the above your work address homeaddress other
Please Check Appropriate Categories () Gov. Personnel (Federal, State, Local) () Related Services Provider (not more than three): () Interested Individual/Advocate/Friend () Self-Advocate () Administrator/Adult Services () Legal Services Provider () Social Worker () Administrator/Education () Occupational/Physical Therapist () Speech/Language Pathologist () Administrator/Other () Parent/Family Member () Special Education Teacher/Support () Adult Service Provider/Staff () Personal Assistant Specialist () Behavior Specialist () Professional Public Policy Advocate () Staff Development/Trainer () Case Manager () Professor/Instructor (College/University) () Student (College/University) () Early Childhood Services () Psychologist () Supported Employment/Day Personnel () Educator/Teacher () Regular Education Teacher/Administrator () Other
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Address Service Requested 106 MAY 2000 PRINTED IN THE U.S.A. Li
: . II I II Issues in Supp_oz, Employment
INSIDE: Ticket to Work Act, Cost Effectiveness of Supported Employed Programs, Systems Change and Supported Employment, and TASH Resolution on Peace JUNE/JULY 2000
TABLE OF CONTENTS (An Invitation to Participate The U.S. Department of Education's Office of Special Education Programs (OSEP) From the Executive Director Page 4 is soliciting input on improving results for infants, toddlers, and children with Trends in Employment disabilities.If you are an individual with a disability, parent, professional Opportunities Page 5 educator, member of a national educational or advocacy organization, Ticket-to-Work Act Page 9 policymaker, researcher, or other stakeholder concerned with special education TASH 2000 Conference Page 11 issues, then OSEP wants to know your opinions. TASH Resolution on Peace Page 14 Systems Changeand Supported Information will be used by OSEP to develop a long-range, comprehensive plan Employment Page 16 for its IDEA National Program (Part D of the Individuals with Disabilities The Community Imperative Page 18 Education Act). The plan will identify national activities for linking best Excerpts from Diane Coleman's 1999 practices to states, school systems, and families to improve results for children Conference Keynote Remarks Page 20 and youth with disabilities. CostEffectiveness ofSupported Employment Programs Page 25 How to Participate National Supported Employment Consortium Page 29 Web site -- The survey is available at:
Print surveyTo request a survey, please call 1-800-510-1668 (TTY: 1-800-813-5812), send e-mail to TASH (formerly The Association for [email protected], or write to Westat at: Westat, Inc., Persons with Severe Handicaps) is an OSEP Comprehensive Planning Project, 1009 Slater Road, Suite 110, international advocacy association of Durham, N.C. 27703 people with disabilities, their family members, other advocates and people who work in the disability field. TASH IDEAS actively promotes the full inclusion and thatWork participation of persons with disabili- ties in all aspects of life.To receive U.S. Office of Special Education Programs an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite Note from the Editor: We wish to thank the many people who responded to our request for personal stories 210, Baltimore, MD 21204 or phone from and about people with disabilities and their work experiences. The response was so great that we (410) 828-8274, ext. 8 or e-mail: plan to publish a special section on supported employment stories later this Fall.If you have a personal [email protected]. story about supported employment and/or transition issues that you would like to share with the TASH readership, please submit it for consideration to Priscilla Newton at
MISSION STATEMENT Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. fAsT11SFI 101, e-mail:[email protected] For information on conferences, regional workshops, or technical assistance, Stretching the boundaries of what is possible; call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 TASH, Ext. 103, e-mail:[email protected] Building communities in which no one is segregated and everyone belongs; For questions about the 2000 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] Forging new alliances that embrace diversity; For questions about membership, conference registration or exhibiting, call: Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. Advocating for opportunities and rights; 100 or [email protected] For information on governmental affairs, call: Dan Dotson, Coordinator of Eradicating injustices and inequities; Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] For information on marketing and promotions, permission and reprints, Supporting research and disseminating or newsletter submissions and advertising, call: Priscilla Newton, Director of knowledge and information; Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] For information on the Journal (DASH), call: Linda Bambara, Editor-in-Chief, at Promoting inclusive education; (610) 758-3271, e-mail: [email protected] 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, in large print, and in Braille for people whose disabilities make these alternative formats preferable. Call (410) 828 -8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in the TASH Newsletter should be Promoting excellence in services. 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 21 0 3 TASH Newsletter, June/July 2000 MARCH FOR JUSTICE
MARCHFOR JUSTICE We're Voting for Our Lives! Monday October 2, 2000 -12:00 Noon Upper Senate ParkWashington, DC
Join thousands of civil rights advocates fora rally to support the American's with Disabilities Act (ADA). This fall the United States Supreme Courtwill be hearing arguments in thecase of Garrett v. University of Alabama, which calls into questionthe constitutionality of the ADA. The civil rights of millions of people with disabilitieshang in the balance while we await the decision.
This is not just a case about disability rightsit is about everyone's civil rights. Thereare no guarantees in life and anyone may find themselves facingthe injustice of discrimination by an employer or lack of access, because of a disabilityor even a serious illness such as cancer, asthma, or HIV/AIDS. Without the protections that the ADAprovides to guard against injustices in the workplace and community,everyone in America is faced with the threat of losing their civil rights.
The rally will take place just 36 days before the electionof the next President of the United States. The next President will be in position to appointseveral new Supreme Court Justices during his term. The decisions that the nextgroup of Supreme Court Justices will hand down will affect the civil rights of all Americans forgenerations. We need to make sure that the Presidential candidates are aware thatwe will voting our hearts and minds in favor of justice for all!
So make plans now to come to Washington D.C.on the first Monday in October the opening day of the Supreme Court sessionto join with other advocates for justice and with our combined voices we will send a loud and clearmessage to our elected officials, and candidates that we are "VOTING FOR OUR LIVES" thiselection.
If you are unable to attend the event in WashingtonDC, contact Andrew Imparato at AAPD to learn how you can organizean event in your hometown.
So come to Washington DC on October 2or participate in a local event and let our message be heard. And remember!!! Be sure toencourage your families, neighbors, and friends to get out and VOTE FOR THEIR LIVESon November 7.
Sponsoring organizations of the March For Justice:
American Association of Persons with National Association of Protection and Disabilities AAPD Advocacy Systems - NAPAS ADAPT National Council on Independent Living- Disability Rights Education and Defense NCIL Fund - DREDF National Parent Network on Disabilities Disability Rights Center NPND National Association of People with AIDS TASH: Disability Advocacy Worldwide
PAGE 3 1 0 9TASH Newsletter, June/July 2000 PCICIR2 VNIE EIZE@INTOWE DOL3Eg40L1
TASH envisions a future in which equal It's not that a minority of Americans want opportunity will be the norm; in which eventually to live in a nursing home, it's children with disabilities and children who not that only a small percentage of do not have disabilities will be educated Americans hope one day to live out their side-by-side; in which all children will be lives in a nursing home...try this. Ask provided the supports they individually your friends, neighbors and co-workers. need to be successful. TASH envisions a NOT ONE person in your survey will world in which adults with disabilities, mention life in a nursing home as one of and those without, having grown up side- his/her goals. by-side as children, will live together as co- workers, neighbors, and friends. So how did we get where we are today? How did we get to where nursing homes or TASH celebrates the growing trend among institutions are the only available choices Vooma ghe Eneologilwe Dueogog. disability organizations toward a true for people with complex needs for support BY NANCY WEISS cross-disability focus. One of the messages when no one given options, would choose I want you to take home today is that them? It sure wasn't people with disabili- Let Freedom Ring people with mental retardation and other ties who came up with this plan! developmental disabilities are no less On Sunday, June 18th, TASH angry. They no more want to live in But people with disabilities have come up participated in a rally in Wash- institutions than anyone else and they no with a plan a new plan and it's ington, D.C. that was attended more need to live in institutions than called MiCASSA. And what's brilliant by over 800 disability advocates from anyone else. They will no longer accept about this new plan called MiCASSA is across the country. The rally called for institutions and other congregate living that it benefits everybody. It benefits people Congress to pass S. 1935, the Medicaid situations as their only options. with physical disabilities who have been Community Attendant Services and stuck in nursing homes. And it benefits Supports Act (MiCASSA). MiCASSA, It has served those who would see people equally people with mental retardation and introduced by Senator Tom Harkin (D- with disabilities kept down well to keep other developmental disabilities who have IA) and co-sponsored by Senator Arlen disability groups apart and to fan the been shut away in institutions without a Specter (R-PA), is a bipartisan bill which flames of conflict and competition among voice and without a chance. Not only does would allow people to choose to live and disability communities. Today's rally for it benefit people who need complex to receive services and supports in the MiCASSA is living proof that we will no supports today it benefits all Americans community; a choice they lack under longer allow our power to be diffused by because anyone who is not institution- current institutionally-biased Medicaid allowing ourselves to be splintered into alized today or at risk of being institution- policy. The rally was marked by a competing camps. alized today is only temporarily out on renewed commitment to cross-disability bail. All Americans face the risk of being advocacy to fight together for changes All people with disabilities and their institutionalized as we age. that will benefit all people with disabili- friends, family members, and advocates ties. share common goalsand these don't seem We of the disability community have found like too much to ask: our strength not only in numbers, not only I spoke at this rally representing TASH. in the commonalities that bind us together, My remarks follow: To be given a fair shake; but today, in logic. What could be more tTo be given the same opportunities as logical: "My name is Nancy Weiss. I am here everyone else; and, representing TASH, an international +To given the same access to the Ameri- Take an approach that no American would disability advocacy association that is can dream as every other citizen of this chose for him or herself and make a new unique. TASH is not a professional great county. plan. Turn it around so that CHOICE, association; it is not a parent organization; rather than CONTROL, is the cornerstone nor is it an association of self-advocates Ask a group of any Americans what their of the new plan. Give every American rather, it is the only organization I know goals are for their golden yearsnot a equal access to the American dream and let that is a true coming together of all three. group of people with disabilities - just your freedom ring - not just for the young, not TASH's members are people with disabili- average group of guys playing cards, the just for the educated, not just for the able- ties, family members, and people who work parents of the PTA, a group of little league bodied, but for ALL. Let Freedom Ring!" in the disability field in all capacities, coachesand not one person will say 'to worldwide. spend them in a nursing home.' 10
PAGE 4 TASK Newsletter, June/July 2000 412EVIDO MaPICYMER74 OPP©124M1040130
You have to know where you're peers, and individuals going, to be able to state it clearly who are working are and conciselyand you have to disproportionately care about it passionately. participating in entry Tom Peters & Nancy Austin level and service industry jobs that have not benefited from the economic boom. In ver the past 1997 the median annual several years earnings of men with there has been disabilities was $10,562 increasing0 national compared to $30,466 for emphasis on the partici- men without disabilities. pation of individuals Women with disabilities with disabilities in the had median annual labor force. This concern was highlighted earnings of $8,124, compared to $20,311 by the establishment of the Presidential Are we there yet? for women without disabilities. Task Force on Employment of Adults Trends in Employment with Disabilities by Executive Order on Opportunities and Data on poverty and disabilities are March 13, 1998. The Task Force has as consistent with the employment data. its mission "to create a coordinated and Supports Based on family income, 25% of men aggressive policy to bring adults with with disabilities and 32% of women with disabilities into gainful employment at a BY JOHN BUTTERWORTH AND disabilities lived in families with an rate that is as close as possible to that of DANA GILMORE income below the poverty line. Poverty the general adult population." A variety has and continues to be closely related to of recent legislation and policy changes disability. A recent study appearing in address employment opportunities. The the New England Journal of Medicine Workforce Investment Act of 1998 was raises questions as to whether disability implemented with a broad goal of Data from the current population survey suggest that over the ten years between leads to poverty or poverty to disability. consolidating, coordinating, and improv- 1987 and 1997 labor force participation This study notes that living with pro- ing all national workforce development longed economic hardship affects people initiatives, including vocational rehabili- for both men and women with disabili- ties declined, despite the economic boom much like a major chronic disease by tation and youth employment programs. limiting physical and mental ability and The Americans with Disabilities Act, the in the mid to late 1990's. These data are summarized in Table 1. impinging on routine activities of daily Ticket to Work and Work Incentives living (Lynch, Kaplan & Shema, 1997). Improvement Act of 1999, amendments Table 1: Labor ForParticipation to the Vocational Rehabilitation Act, and Data adapted from Burkhauser et. al (1999) As labor needs grow and the changes to Medicaid regulations are all workforce changes, companies intended to expand access to employ- 1987 1992 1997 are indicating a growing concern ment. with supporting a diverse Men w/o disabilities 96.1% 94.8% 95.2% workforce in responsive ways. Despite these and other policy initiatives Mm w/ disabilities 44% 41.6% 35.5% Growth in the percent of indi- on both the state and federal level, viduals from diverse cultures, employment trends continue to carry Wolirli w/o 77.1% 77.6% 80.7% disabilities women, and individuals over the both good news and bad news. This age of 65, are leading to a growing summary will review current information Women w/ 37.5% 34.3% 31.9% emphasis on flexibility and work/ about employment trends on a national disabilities family supports. All of these level for the general population and for changes should lead to increased state MR/DD and VR agencies, the largest sources of employment support for Poor labor force participation is, of individuals with significant disabilities. course, only part of the story. Individuals with disabilities experience both under- General Employment Trends employment and high rates of poverty. The median annual earned income for Individuals with disabilities participate inindividuals with disabilities is as much as the labor force at consistently lower rates one third lower than their nondisabled Continued on page 6 than individuals without disabilities. 1 PAGE 5 TASH Newsletter, June/July 2© TRENDS IN EMPLOYMENT OPPORTUNITIES
Trends in Employment increase of 40% or 110,000 individuals having a developmental disability, the Opportunities and Supports from FY88. focus of the data reported here. The last Continued from page 5 15 years have been a time of significant Supported employment has expanded policy change for the VR system. The steadily. The number in integrated 1986 amendments to the Rehabilitation employment increased by over 200% Act defined and established funding for flexibility and opportunity for employees from 32,471 in 1988 to 98,315 in 1996. supported employment, while the 1992 with disabilities. Concurrently the percent of individuals and 1998 amendments extended VR's who participate in integrated employ- commitment to competitive employment State MR/DD Agency Services ment has risen from 14% to 26% of all outcomes for individuals with the most individuals receiving day and employ- significant disabilities and strengthened State MR/DD agencies provide, fund, or ment services. consumer participation in the rehabilita- monitor a wide range of day and employ- tion process. During this period there has ment services for individuals in the Maintenance of dual systems. Despite been steady improvement in the employ- community service system. These the significant growth in integrated ment outcomes of individuals with services include employment supports, employment, these data show continuing developmental disabilities in the VR traditional facility based options includ- growth in the number of individuals system. Four trends were particularly ing sheltered workshops and non-work supported in facility-based and non-worksignificant: day habilitation programs, community services. The total number of individuals integration services, and more individu- in facility-based and non-work services 1. The total number of individu- alized options. The Institute for Commu- increased in real numbers during this als exiting VR services and rate of nity Inclusion has collected data on period from 242,102 in FY88 to an successful closures has remained trends in day and employment services estimated 320,359 in FY96, an almost steady. The total number of individuals funded or monitored by state MR/DD 12% increase. with mental retardation and developmen- agencies since FY88. Data is currently tal disabilities completing VR services available for FY88 through FY96. Individuals are more likely to use (having their cases closed) has stayed multiple services or settings. There are remarkably stable between FY85 and National data provided by state MR/DD increasing reports of individuals who FY98, ranging from a high of of 73,736 to agencies indicate that while the number receive multiple services simultaneously a low of 67,638. Similarly, the percent of of individuals in integrated employment dividing their time between a community successful closures, individuals who has increased dramatically, with almost job and other service options. This is a achieved a rehabilitation goal, was 100,000 individuals reported in inte- significant change from FY88 when most consistent at between 46% and 48% of grated employment in FY96, there is individuals were in a clearly designated the individuals who exited VR services wide variation from state to state in service category. for each of the years. A closure consid- employment participation. In fact, ered successful by VR can include a individual state reports vary from a low Community-based non-work services variety of outcomes, including competi- of 4% participating in integrated employ- are expanding. Finally, states are increas- tive employment, sheltered employment, ment to a high of 60% in integrated ingly reporting community-based non- or self-employment. In FY98, 86% of the employment. Nevertheless some states work (or community integration) as a successful closures were in competitive have made dramatic change. In FY96, service category, and this option was employment, and 12% were in sheltered five states (Colorado, Connecticut, included for the first time in these data inemployment. Minnesota, New Hampshire, and Wash- FY96. These services represented 16% of ington) reported that over 40% of their the overall services reported by states in participants in day and employment FY96, despite the fact that not all states services were in integrated employment, reported them. suggesting that substantial systems change is occurring in some states. State VR Services Despite positive change, the majority of service system Major trends through FY96 indicate that: State Vocational Rehabilitation (VR) resources continue to sup- agencies provide services to over one port facility-based or other MR/DD agencies significantly million individuals annually, with non-work services. expanded their capacity to provide day approximately 600,000 individuals and employment services during these completing services and having their case eight years, supporting almost 398,000 closed in each fiscal year. Approximately individuals in FY96. This represents an 12% of those individuals completing services in each year can be identified as Continued on page 7
PAGE 61-L2TASK Newsletter, June/July 2000 TRENDS IN EMPLOYMENT OPPORTUNITIES
Trends in Employment ported employment services are still not Opportunities and Supports fully integrated into the mainstream of Note: This manuscript was sup- ported, in part, by cooperative Continued from page 6 services funded under Title I of the Rehabilitation Act. agreement # 90D0032, from the Administration on Developmental Summary Disabilities, Administration for These trends represent both good news Children and Families, Department 2. Entry into competitive em- and bad news in the effort to expand of Health and Human Services, and ployment has increased. There has been access to employment. There is clear grant # H133B980037 from the a steady increase in the number and continued growth in the number of National Institute on Disability and percent of individuals entering competi- individuals in integrated employment, Rehabilitation Research, U.S. tive employment. This change is evident and there are increasing opportunities for Department of Education. across all levels of disability, and in flexibility, creativity, and consumer- particular the percent of individuals with direction in day and employment Resources moderate and severe mental retardation services. At the same time, facility-based Detailed data on state and national entering competive employment in- and non-work services have continued to trends between FY88 and FY96 are creased from 52% in FY85 to 78% in grow nationally, raising concerns about available in the 1999 ICI mono- FY98. the service system's commitment to the graph, State trends in employment goal of integrated employment. Similarly, services for people with develop- 3. Real wages and hours worked the growth of community-based non- mental disabilities: Multiyear have declined. While the mean weekly work services raises questions about the comparisons based on state MR/DD earnings of individuals with mental clarity of the service systems commit- agency and vocational rehabilita- retardation and developmental disabili- ment to employment as a primary goal. tion (RSA) data. The monograph is ties who entered competitive employ- The VR system has substantially in- available for $20 including ship- ment with VR support has remained creased the number of individuals ping. For information on ordering relatively stable between FY85 and FY98, entering competitive employment with contact Emily Barrett at (617) 355- when wages are adjusted for inflation the support of rehabilitation services. Of 6506 or by email at there has been a significant decline in more concern is the quality of the
Trends in Employment Opportunities and Supports JASH Continued from page 7 Call for Papers
Sexuality and sexual expression are natural and important aspects of our everyday lives. Yet, for people labeled One-Stops9- W1A Direct 5ervice with severe disabilities, opportunities for sexual expression are often overlooked, he implementation of the Workforce 5caff under supported, or outright denied. 1 Investment Act (WIA) is set to occur Moreover, people with significant on July 1st. WIA replaces the Job Training support needs often fall victim to sexual Partnership Act (JTPA) and covers the Needed assault and abuse. Sexuality and sexual general workforce and training systems in expression are important concerns for all this country, including the One-Stop people, but until recently the topic has system. (Vocational Rehabilitation is been given little attention for individuals among the mandated partners in the One- Growing non-profit seeks staff who require the most support to express Stop system.) to support a young boy with their sexual desires, communicate affection toward others, and enter into To help in the exchange of information developmental disabilities in fulfilling intimate relationships with with the disability community about the Silver Spring, Maryland home. partners of their choice. new workforce system, a message board on One-Stop Centers and the Workforce Responsibilities include: JASH, the journal of TASH, invites Investment Act (\VIA) has been developed contributions to a special series on by the Institute for Community Inclusion. Issues in Support of Sexuality to be co- The purpose of this message board is to implementing and monitoring edited by Linda M. Bambara (Lehigh provide a forum for exchange of informa- care plans; and University) and Ellen Brantlinger tion on disability-related issues pertaining (Indiana University-Bloomington). to WIA and One-Stops. Among the areas forming partnership with family Specifically, JASH invites research studies that the message board will cover are: (quantitative and qualitative), policy of child to provide supports at analyses, concept/position papers, Questions concerning the use of One- home and in community. reviews of the literature, and program or Stop Centers by people with curriculum descriptions. disabilities Requires a 13S degree and evening/weekend hours. In addition, JASH seeks short personal The opportunities available for people reflection papers by parents, self- with disabilities under WIA advocates, and other participants in the Previous experience disability field for the Exchange section Sharing of experiences in using One- supporting children with of the journal. Exchange manuscripts Stop Centers by the disability developmental disabilities will be evaluated according to their community contribution to the discussion of preferred. Excellent salary and sexuality issues (author guidelines may Tips for people with disabilities in using benefits. be found on the inside back cover of One-Stop Centers JASH). Send resume to: Any other issues related to W1A & One- Papers submitted to JASH for possible Stops of interest to the disability publication as part of the special series community SEEC, Human Resources should be preparedaccording to the 707 Conservation Lane Journal's author guidelines, and all Please feel free to visit the message board Gaithersburg, Maryland 20878 submissions will be peer reviewed. to add your input and to find Fax: 301-527-0119 out what's happening with the implemen- For additional information on the tation of WIA. You can access the message E-mail: [email protected] submission process, please contact: board at: www.childrenshospital.org/ici/ wiaforum/ Linda M. Bambara, JASH Editor, Lehigh University, College of Education, 111 Research Drive, Bethlehem, PA 18015 or send an e-mail to 114 [email protected]>
PAGE 8 TASH Newsletter, June/July 2000 TICKET-TO-WORK ACT
The Ticket-to-Work The Ticket-To-Work weakest link and and Work Incentives greatly under-funded Improvement Act signed and by the state partner by the President in December agencies. The ongoing 1999 is intended to: Supported support of monthly payments from SSA 1) Increase beneficiary choice in Employment: for up to 60 months of obtaining rehabilitation and employment --seemed vocational services; How will it work? to be the solution to this problem. 2) Remove barriers that require people with disabilities to choose Details of the Plan between health care coverage and Unfortunately, as work; and always, the deuce is in the details. The 3) Insure that people with voucher payments disabilities have the opportunity would be made to the to participate in the workforce vendor in two parts, a and reduce their dependence on series of "milestone" public benefits. There are over 600 existing providers payments during the first 9 months of nationally that fit one of these categories, employment and then 60 monthly Plan Overview so there will be some choice of provider payments for retention of employment at The disability community has welcomed from the first day. At the outset, the SGA (substantial gainful activity). SGA the Ticket-to-Work ("Ticket") portion of Ticket program will not be available is currently set at $700 per month. If the the bill as an opportunity for self- everywhere. SSA plans to phase in all beneficiary does not make at least $700, determination and for people with states and territories over a 3 year period. no monthly payments would be made to significant disabilities to drive services The first beneficiaries to have Tickets the vocational service provider. rather than the reverse. The Ticket will issued will be in the initial pilot states give every SSI and SSDI recipient a beginning January 1, 2001. The 12 pilot The milestone payments are meant to voucher for the purchase of vocational states are scheduled to be chosen by the reduce the financial risk a provider of services. The vouchers will be valued at end of the Summer or early Fall 2000. service has in serving the beneficiary. a percentage of the estimated savings to The SSA will contract with a Program The cost of assisting a beneficiary to the Social Security Trust Fund when a Manager to issue the Tickets and manage obtain 9 months of employment can be beneficiary returns to work and leaves the administration of the provider quite high depending on the individual's the roles. The initial value was set by network. The Program Manager will be level of need. States that have existing Congress at 40% of the estimated averageselected by the end of September 2000. milestone payment systems for supported savings. To insure adequate incentive to The Program Manager will likely be one employment report that the cost of 6 to 9 serve those with the most significant of several administrative service organi- months of placement, training and disabilities, the Commissioner of Social zations with expertise in vocational employment support ranges from $5,000 Security can adjust this figure. The SSI services. to $12,000 for individuals with signifi- Ticket/voucher will initially be worth approximately $12,000 and the SSDI Impact on Existing Benefits Ticket/voucher will have a value of Naturally, those of us who have worked Disability advocates should approximately $18,000. with or benefitted from supported monitor the implementation of employment programs wonder how this the "Ticket" law in their state Beneficiaries will choose from SSA- new system will effect or enhance the and actively work to overcome approved providers and develop a plan ofexisting systems. My hope when I read any limitations of the law service with the provider. Existing SSA the law was that this huge infusion of vocational service providers under the funding, up to $80 billion over the life of Alternate Participant [alternative provid- the program, would strengthen sup- Changes are likely to be needed ers to the VR (vocational rehabilitation) ported employment services because it to the legislation when the exact system] program will be automatically provides for 60 months of payments to nature of potential discrimina- approved for the new system, as will the provider for supporting the tion against individuals with the State VR agencies and One-Stop Employ- beneficiary's continued employment. My greatest needs are clear. ment Centers. State Agencies will be observation of most supported employ- considered a provider and will have to ment efforts is that the ongoing support compete for the beneficiary's business. of the worker to retain employment is the Continued on page 10 / PAGE 9 1 i ill.SH Newsletter,June/July 2000 TICKET-TO-WORK ACT
Ticket-to-Work and Supported Em- actual cost. The farther from the real cost i.e., has to go to the bank to borrow. This ployment: How will it work? the milestone payments get, the greater would reduce but not eliminate the Continued from page 9 the incentive to "cream" or -- more pressure to discriminate. accuratelydiscriminate, against people with significant disabilities. Congress was concerned about this problem, as evidenced by the provision cant disabilities. In the vocational Pitfalls of the Plan in the Ticket law requiring SSA to submit rehabilitation (VR) system nationally the SSA wants to leave the provider with a a report by Jan of 2003 on the "Adequacy cost of services to reach 9 months of deficit at the end of 9 months of service of incentives for the provision of services substantial gainful activity is about with the only hope of breaking even for: $10,750 according to SSAs VR reimburse- being the ongoing monthly payments of ment figures.The milestone payment $200-300. The theory is that because the `(i) individuals with a need for ongoing system, as used for supported employ- provider's funds are "at risk," they will be support and services; ment, was intended to pay the full more likely to insure that the beneficiary `00 individuals with a need for high-cost average cost of providing services, while stays employed until the Trust Fund accommodations; simultaneously giving the customer/ breaks even. The break-even point is `OW individuals who earn a sub-mini- consumer more control and a better where SSA saved more in benefits not mum wage; and quality outcome. paid to the recipient than they paid the `(iv) individuals who work and receive provider. Because SSA is only paying out partial cash benefits." The Ticket use of milestones differs in 40% of the estimated average savings, that it is not intended to cover the full their breakeven point will be between 2 SSA or their Program Manager could cost of the service. The Ticket will pay and 4 years of employment above encourage state MI-I/MR Authorities to less than the cost so that the provider substantial gainful activity (SGA). About establish Employment Networks which breaks even after about 2 to 4 years of 60% of the SSI/SSDI beneficiaries have a would provide Milestone funding to employment. The provider will only developmental disability. Many, if not providers at rates which do cover the breakeven if the consumer continues to most, of these individuals, as well as a average cost of 9 months of service. work and does not receive a benefit sizable portion of the remaining 40%, Many states are already doing this by check. In that instance, they receive the will not appear to be "good risks" under developing Supported Employment monthly payments in addition to the this system. Milestone payment systems. The State milestone payments for a maximum of 60 MI-I/MR Authority would use existing or months. The 60 months of employment There will be enormous pressures on new vocational funding to finance the do not have to be consecutive. As yet, no providers to reject tickets from beneficia- services and SSA would pay them under rate has been set for the milestone ries who "appear" unlikely to work at the Ticket program. The State program payments, but the Congressional Budget SGA for 4 years. Disability advocates would thus take on the initial risk that Office (CBO) estimated that it would be have addressed this issue with SSA and SSA is not willing to shoulder, and small set at $1,500 for 9 months of service. they are listening. SSAs focus for right providers can't, and SSA would fund the SSA will probably set the payment higher now is on getting the first states up and ongoing support services with the than CBO estimated but lower than the running in January 2001, not on address- monthly payments. ing "possible" future problems. We need to keep the discussion going on this issue Close Monitoring is in Order and watch very closely during the implementation phase. SSA will need Advocates should be monitoring the feedback when the problems are clearer implementation of the Ticket in their and real. What they can do to address states and actively working to overcome About 60% of the these problems is two-fold: the limitations of the law Congress SSI/SSDI beneficia- ries have a develop- expects to have to revisit the law as mental disability. As part of the Ticket rollout, they implementation proceeds. Advocates Many, if not most, of could simultaneously establish pilot warned Congress members and staff these individuals, programs to address the needs of "high about these potential problems. Changes as well as a sizable portion of the cost" individuals. One option is to pay a are likely to be needed to the legislation remaining 40%, higher rate perhaps 50% of estimated when the exact nature of the discrimina- will not appear to savings for the higher cost individuals tion against high need individuals is be "good risks" under (defined below) and use the additional clear. this system. funds to make higher Milestone pay- ments. This would reduce the amount of money the provider would be at risk for, 116 PAGE 10 TASH Newsletter, June/July 2000 2©@@ MOM (C)RIPRGIERM
260® 'Main Connfferrennee 66 99 Owfont e 1gad December 6-9, 2000 +The Fontainebleau Hilton Resort and Towers 0:0 Miami Beach, Florida
ASH members, as individuals, "The Tiles Won't Stich Without the Grout" advocates, families, and profes- Pat Mirenda sionals, are working together to pave the way and stretch the boundaries This keynote of the "cutting-edge" in supporting will employ people with disabilities to live the lives of the image of a their choiceas integral and meaningful E.0 mosaic to members of the community. examine the Mark your calendars now to join over changes that N Miami Beach, Florida December 6-9th 2,500 people from all over the world at have occurred the internationally recognized TASH over the past Annual Conference, "Moving the Edge." 20 years with Tentative Conference Agenda There will be over 350 sessions, exhibits, regard to the roundtable luncheons, and much more. places in Tuesday, December 5th Keep an eye on our web site which people 7:00 PM 9:00 PM Registration Open
OOOOOOOOOOOO OOOOO OOOOOOOOO OOOOOO What's free and how can you take advantage of it? Why, registration for volunteers to this year's information-packed, exciting TASH Annual Conference in beautiful Miami Beach, Florida, of course!
If you would like to attend the conference and save on registration fees, e this is the deal for you! As a volunteer, you donate a minimum of 10
hours of service during the conference in exchange for complimentary 0 registration to attend any of the more than 350 sessions, workshops and discussion groups on topics ranging from Advocacy to Urban Education Issues and everything in between during your non-volunteer periods.
Whether you've participated as a volunteer before, or would liketo do so for the first time, your services are urgently needed as a Conference Volunteer!
If you are interested in receiving more informationor a volunteer application, please contact Priscilla Newton, Volunteer Coordinator, at 1-800-482-8274, ext. 102 or send an e-mail to
SEE, YOU IN MIAMI BEACIA! fAsT11511 Have you ever thought about the distinctive characteristics that make your state or country such a unique place in which to live? We would love Conference for you to share the tastes, sights and sounds of your favorite places with others who may not have a chance to in Canada?? journey to your corner of the world.
Why not make a donation to the TASH The Conference Committee is looking into the possibility of holdinga Silent Auction?! Not only is the fair future year's conference in Canada. The exchange rate is such that market value of all donations tax deductible, but proceeds from the hotel and meal costs would probably be reduced bymore than one- auction will benefit the TASH Confer- third. Given that the costs would be lower, does your organization, ence Scholarship Fund. The Fund is school or university prohibit travel outside of the United States? used to assist people with disabilities, parents and other family members to attend future TASH conferences. Please respond by telephone (1-800-482-8274, ext. 103)or e-mail
PAGE 13 TASH Newsletter, June/July 2000 TAM BUS t IDETI ©I 1301ECM
one of our keynote speakers at the Agenda for Peace and Justice in the 21st annual conference. Dr. Arias is a Century, which proposes the agenda for visionary leader in the international the United Nations, stresses that "the community, promoting the organiza- violation of human rights is one of the tional values reflected in the TASH root causes of war. These violations TASH Joins with Resolution on Peace (see page 15). include the denial of economic, social Dr. Arias is also one of the primary and cultural rights, as well as political the International authors of the Nobel Peace Laureates' and civil rights" (in other words, the International Code of Conduct on exclusion and maginalization of seg- Arms Transfers. ments of given communities)." Addi- Community tionally "Whose who have suffered the Dr. Arias' keynote will provide most must have a place at the table when To Support Peace guidance to conference participants as peace agreements are drawn up, with he responds to our newly adopted equal representation." Resolution on Peace and highlights the work ahead for TASH. To quote Obviously, this focus is not a stretch for further from Dr. Arias: "world leaders TASH. Also not a stretch is the peace must make human security the priority for movement's focus on self-determination BY CRAIG MICHAELS the 21st century. In contrast to the traditional for those citizens who have typically concept of security linked to military capacity been excluded: "[m]any of today's violent and economic power, human security and persistent conflicts are between "War, and the preparation for war, is one of represents the degree to which human beings states and unrepresented people and are the greatest obstacles to human progress. are protected from ignorance, sickness, hunger; characterized by an extreme power Violence does not resolve problems, rather, it neglect and persecution. Until the demands for imbalance.... To counteractthe power fosters a vicious cycle of arms buildups, human security are met, discord will continue imbalance which drives these conflicts, it conflict, and poverty. Yet, instead of addressing to boil in all regions of the world, periodically is necessary for the international govern- the root causes of conflict, many states often escalating into violent confrontations." mental and non-governmental commu- utilize military might in order to control nity to actively support peoples' right to increasingly desperate populations. Many With the recent approval of the TASH self-determination, to prioritise these developing countries continue to be burdened Resolution on Peace, the Board demon- conflicts and to promote their non- by high percentages of their population living strates TASH's commitment to work for violent resolution.... It is therefore in misery. peaceful solutions to all local, national, imperative that the internationally and international hostilities and conflicts recognized right to self-determination be Let us not forget the magnitude of the irrespective of race, creed, national actively promoted as a tool of conflict challenges that face us as we enter the 21st origin, gender, sexual orientation, or prevention and conflict resolution". century. In today's world, nearly one billion disability. The members of the Peace people are illiterate, more than one billion lack Committee hope to position TASH to TASH must continue to demonstrate its' access to potable water, and 1.3 billion earn work collaboratively with local, national, dedication to working to assure that less than $1 a day. Unfortunately, half of the and international communities to provide intolerance and discrimination and other world's governments dedicate more resources advocacy to individuals and their families civil rights violations associated with to defense expenditures than to health who acquire disabilities as the result of disability are included within all peace programs. war, landmines, hate crimes, acts of agendas. Simultaneously, TASH must violence, neglect, or abuse. True to the assure that the additional impact of Imagine what we could do if a portion of worldTASH mission, we believe that TASH disability on racial, ethnic, religious, military spending was redirected toward should take a leadership role in the gender and sexual orientation intolerance investing in human development." international community to promote the is addressed as well. Clearly, TASH full inclusion and participation in all should be working to position the (Speech by Dr. Oscar Arias during the aspects of life of those individuals and organization to assume a leadership role public signing of the Nobel Peace their families who acquire disabilities as in the peace community assuring that all Laureates' International Code of the result of war and acts of violence. World Congresses and international Conduct on Arms Transfers-New York forums address disability and that people City, 29 May 1997.) As we look at the peace-related work with disabilities participate in these being done throughout the world, we discussions. TASH must work with the TASH is privileged to welcome find recurring themes that are completely international community to assure that Nobel Peace Laureate, Dr. Oscar congruent with the organizational goals Arias, to join us in Miami Beach as of TASH. For instance, the Hague Continued on page 15 1 2 0 PAGE 9 4 TASH Newsletter, June/July 2000 TASH RESOLUTION ON PEACE
TASH Joins with the International At the local-level, TASH must continue working to strengthen local communities' have increased the number ofpersor; Community to Support Peace with disabilities in the world commu- Continued from page 14 capacities to include all people. So much of the work of inclusion is about nity; strengthening local capacity that this item appears to be a natural fit for TASH. Because there are too few interna- all persons who develop disabilities as tional resources dedicated to ensuring the result of war and violence (many of Through this work we have learned that communities benefit as much as, if not that these persons receive the support whom do not identify themselves with required for life activities such as the disability community) are afforded more than, the individuals with disabili- ties. mobility, communication, self-care, the same rights as the individuals with and learning as necessary for inde- disabilities that TASH has historically As further described in the Hague pendent living, employment and self- represented. As we know "[c]hildren sufficiency; and youth continue to be exploited and Agenda, "[s] trengthening such 'local victimized, particularly in violent conflict capacities' is vital to the maintenance of peace and may take many forms from Because TASH's organizational situations where harming children has identity is deeply rooted in eradicat- become not only a consequence, but education and training and nurturing the volunteer spirit in society, to increased ing injustices and inequalities and frequently a strategy of war" (Hague building peaceful communities where Agenda). funding of local peacebuilding initiatives and highlighting the work of local all people are fully included; peacemakers in the media." TASH must TASH must also work actively to elimi- Because TASH is committed to work nate violence at the local level, particu- continue its current work while position- ing itself within the international peace for peaceful solutions to all local, larly at the community level. The Hague national, and international hostilities Agenda documents the finding that: community to make sure that ALL truly does means ALL. and conflicts without regard to race "[v]iolence in the local communities creed, national origin, gender, sexual paves the way for conflicts at the national orientation, or disability; and international levels." Many TASH members are already engaging in work- TASI-I RESOLUTION ON PEACE Because TASH is dedicated to the ing to build inclusive communities where dignity of life of people with disabili- all people belong. As part of TASH's MASH is dedicated to upholding the ties, and peacemaking is deeply peace initiative, it will be important to 1 dignity of life for all persons with rooted in its organizational identity; make sure that this work is highlighted disabilities by actively engaging in and focused to more actively reflect peacemaking in the world community. And because TASH's expression of peacemaking and conflict resolution at TASH recognizes that what may be peacemaking is manifested in non- the local level. TASH must be willing to conceptualized as being about, for, or violence and compassion; voice a stronger presence internationally even with people with disabilities, is in response to the treatment of people more profoundly about all of us as THEREFORE BE IT RESOLVED, with challenging behaviors. Positive human beings. THAT TASH, an international Behavioral Support strategies must begin advocacy association of people with to be developed for including those who As an organization, TASH is working disabilities, their family members, are currently excluded from their to eradicate injustices and inequities other advocates and people who work communities and forced to respond in and build peaceful communities in the disability field is resolved and acts of violence that are self-directed and/ where all people belong and are ready to work collaboratively with or directed towards others. The interna- nurtured to share their special gifts. the world community to provide tional peace movement also highlights TASH acknowledges that peacemak- advocacy to individuals with disabili- this critical need. The Hague Agenda ing must begin with the individual ties and their families. TASH will suggests that schools, educators, and and requires that each of us must take a leadership role in the interna- communities must work to: celebrate our own diversity. TASH tional community to promote the full recognizes that true compassion is inclusion and participation in all "[r]eintegrate into society the young authenticated in feelings of personal aspects of life for those individuals people and some of their elders who have responsibility for the welfare, rights, who became disabled as the result of been marginalized, often as a result of and happiness of all human beings. war and other acts of violence and limited economic opportunities, and their families. whose marginalization has led them into Because war, landmines, hate crimes, violent behavior." acts of violence, neglect, or abuse I Continued on page 28 PAGE 151 1 TASH Newsletter, June/July 2 SYSTEMS CHANGE AND SUPPORTED EMPLOYMENT
Systems Change and Supported Employment: Is There Empirical Evidence of Change?
Since 1985, the national initiative Pioneer states on social initiatives usually about supported employment for emerge based on state culture, industrial- people with significant disabilities BY DAVID MANK ization, urbanization, tax rates and has been characterized, and perhaps economic conditions. Overall, the size of But is the system changing? Is supported haunted, by the phrase "systems change." disability advocacy groups and emer- employment inexorably replacing Supported employment began with a gence of states' civil rights legislation are segregation, or has it simply been an small number of unique demonstration better predictors than state wealth of interesting addition to a range of services programs scattered around the USA that overall state investment in services for that continues to embrace underemploy- clearly showed that people with signifi- people with disabilities. Surely, supported ment and segregation? cant disabilities could work successfully employment is not immune to the in real jobs in typical business settings if cultural, contextual, economic and For the last three years, the Indiana provided individual supports for long political influences. term success. The successes of these Institute on Disability and Community has been pursuing such questions as a projects created a widespread dissonance: In the last 15 years, the federal govern- part of the National Supported Employ- if the individuals in these demonstration ment has invested more than $100 ment Consortium, led by the Rehabilita- projects could succeed in integrated million in systems change and related tion Research and Training Center at employment, what about the hundreds of projects in 48 states. Our analysis has Virginia Commonwealth University. This thousands of others with similar support centered on identifying states that appear work has led to questions about how needs spending their days in segregated to have more widespread implementation social systems change, how economic, settings, largely unemployed or under of supported employment and to identify political and cultural influences effect employed? the context variables in those states change, how federal and state policy and compared to other states. Hence, led by local innovations and incentives influence change, and ways to consider whether or not supported federal incentives, supporters and One measure of state level progress (but employment is representing "systems advocates of supported employment certainly not the only measure) is the rate change." embarked on a mission to "change the on implementation. That is, what is the system" from segregation and unemploy- rate of access to supported employment The body of literature about change in ment to integrated employment with per 100,000 of state population? Our social services overall suggests that long term supports. In the last fifteen analysis considered states in the top one- sustained and widespread change is more years, more than 150,000 people with third on this measure, considering data likely in states where the federal govern- significant disabilities are working in available about implementation at four typical business settings. Their ranks ment mandates and funds the change and include people with intellectual disabili- takes longer and is less widespread if ties, people with mental illness, people there are no financial benefits to states. with brain injuries, and people with Federal leadership enhances change if multiple disabilities. By some measures, there is clear policy direction and if there and if we consider continuity in growth, are incentives to change. In supported supported employment is succeeding. employment, we know that the federal And yet, if we consider that hundreds of government has provided some policy thousands that continue to wait, we leadership and incentives to states. We might conclude that the initiative also know that conflicts in policy exist remains an underachiever. and that there is no mandate of change to I supported employment.
2 Continued on page 17 PAGE 16 TASH Newsletter, June/July 2000 SYSTEMS CHANGE AND SUPPORTED EMPLOYMENT
Systems Change and Supported States have shared leadership roles in Employment:. Is There Empirical supported employment. Evidence of Change' State leadership in implementation TAM wishes to Continued from page 16 has included states from varied cultural acknowledge the and political contexts. ilenerous support of our newest lifetime member points in time in the late 1980's and in While some early state implementors the 1990's. By this measure, 28 states led in pace of implementation, it is also were a part of the top third in implemen- clear that states without systems change tation at least once. Seventeen states were grants emulated pioneer states. Anne C. Smith a part of the top third at least twice. Ten Baltimore, Maryland states were consistently a part of the top There has been continuity of growth third. across 15 years. Lifetime membership entitles you As many as 40 states now have to full international and chapter advocacy organizations specific to member benefits for your lifetime. Perhaps the greatest measure of supported employment (Associations for The cost can be remitted over systems change will be the extent Persons in Supported Employment). several monthly payments. to which supported employment continues to grow to include The question often asked about sup- If you are interested in becoming a every person with a significant ported employment is: Has the "system" lifetime member of TASH, contact disability who wants a job in an changed? As we consider both the good Rose Holsey at 410-828-8274, ext. integrated setting with long-term news and the bad news about implemen- 100. and personalized supports. tation, perhaps the better question is this: Is the system changing? Rather than a retrospective question, perhaps the Those states consistently implementing greatest measure of systems change will supported employment at a higher rate be the extent to which supported employ- were more likely to have been one of the ment continues to grow to include every first 10 states to receive systems change person with a significant disability who incentive grants from OSERS, or states wants a job in an integrated setting with that received such incentive funding for long-term and personalized supports. more than five years. In addition, states with the highest rates of supported employment were more likely to have Join greater funding invested in supported the employment relative to per capita income David Mank, Ph.D. is the Director of the TASH and higher overall employment rates. Indiana Institute on Disability and Further, those states with higher rates of Community at Indiana University, the Update supported employment have higher rates UAP of Indiana. He is a Full Professor E-mail of people with mental illness in supported in the School of Education, Department Listserve! employment. of Curriculum and Instruction. This is a forum for TASH members, These kinds of results are tantalizing but Project Staff at Indiana University friends and supporters to discuss the hardly conclusive. The rate of implemen- includes: Becky Banks, Stephanie latest issues affecting people with tation is but one measure. Quality of Charleston, Teresa Grossi, Martha disabilities. The listserve provides implementation, continuity in change, McGaughey, Jeanne Novak, and Pat members and other interested persons expansion to people with disabilities Rogan. with an opportunity to identify and other than intellectual disabilities, are connect with others who share particular also valid measures of progress. Ques- Questions regarding this article may be interests, expertise and experiences. tions about the extent to which there is directed to Dr. Mank at You can subscribe directly from TASH's systems change must also take other
THE Human Policy by mail (Syracuse University, 805 South Crouse COMMUNITY Avenue, Syracuse, NY 13244- 2280), fax (315-443-4338), or e- IMPERATIVE mail ([email protected]). Please state your endorsement of The Community Imperative and In 1979, the Center on provide the following information: Human Policy at Syracuse University wrote The Name Community Imperative, a declaration Title (Optional) supporting the right of all people Organizational Affiliation (Op- with disabilities to community tional-for identification purposes living. The Center has reissued only) The Community Imperative in 2000 City/State/Country and invites endorsements from Mailing Address (Optional) individuals and Braddock, Lou Brown, Allen E-mail (Optional) organizations. Crocker, Seymour Sarason, Eleanor Elkin, James Ellis, Philip Roos, Frank Organizations can also endorse The Background to The Community Laski, Judy Heumann, Linda Glenn, Community Imperative. The President or Imperative Bruce Ennis, Marc Gold, Fred Krause, Director of the organization should Horace Mann, Lotte Moise, Bengt Nirje, contact the Center on Human Policy (see The Community Imperative was written in Tom Nerney, John O'Brien, Patty Smith, contact numbers listed above). Clearly response to organized opposition to Edward Skarnulis, Ann Turnbull, Rud state that you are endorsing The Commu- deinstitutionalization and community Turnbull and Jean Vanier, among others. nity Imperative on the behalf of your living. Specifically, The Community organization and provide the following Imperative was intended to counter a Why Has the Center on Human Policy information: 1978 memorandum submitted by 10 Reissued The Community Imperative? national experts in hearings in the Wyatt Name of Organization case in Alabama that argued that only a Today, 21 years after The Community City/State/Country small number of institutional residents Imperative was written, deinstitutionali- Mailing Address (Optional) could be expected to adjust to commu- zation and inclusion remain controversial E-mail (Optional) nity living and that training programs in some states and localities. Current were inappropriate for a substantial debates and controversies surrounding A listing of individuals who endorsed The number of them. The purpose of The community living obscure fundamental Community Imperative in 1979 can be Community Imperative was to establish disagreements over values and beliefs viewed at: http://soeweb.syr.edu/thechp/ that all human beings, regardless of between those who support and those initial_list.html nature and severity of disability, are who oppose inclusion. The Center on inherently valuable, have fundamental Human Policy believes that it is necessaryA current list of individual endorsements rights, and are capable of learning, to focus attention on the principles of The Community Imperative can be growth, and development. underlying community inclusion. viewed at: http://soeweb.syr.edu/thechp/ individual_endorsements.html The Community Imperative was written by The time to debate the place of people the Center on Human Policy at Syracuse with disabilities in the society and the A current list of organizational endorse- University, under the leadership of the community has long since passed. It is ments of The Community Imperative can be late Burton Blatt. In addition to Center time to shift attention to assuring that viewed at: http://soeweb.syr.edu/thechp/ on Human Policy staff and associates community living is accomplished in a organization_endorsements.html Ellen Barnes, Douglas Biklen, Robert manner consistent with the values and Bogdan, Hillery Schneiderman, Jo Scro, beliefs expressed in The Community The preparation of this article was Steven Taylor, and Wolf Wolfensberger, Imperative. The full text of The Community supported in part by the National The Community Imperative was endorsed Imperative follows on page 19. Resource Center on Supported Living by over 300 parents, people with disabili- and Choice, Center on Human Policy, ties, researchers, and professionals. The How To Endorse The Community School of Education, Syracuse initial list of signers included such Imperative University, through the U.S. Depart- leaders as: Gunnar Dybwad, Rosemary ment of Education, Office of Special Dybwad, Robert Perske, Alan Abeson, Individuals can endorse The Community Allan Bergman, Ed Roberts, David Imperative by contacting the Center on Continued on page 19 PAGE 181 .:2` 4 TASH Newsletter, June/July 2000 CENTER ON HUMAN POLICY
nie common 3amerathe Continued from page 18
South Coast ESD Education and Rehabilitative Services, National Institute on Disability and Coos Bay, Oregon Rehabilitation Research (NIDRR), through Contract No. H133A990001. Mem- bers of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR and no endorsement should Seeks teachers of children be inferred. The Center on Human Policy subcontracts with TASH for space in with significant disabilities. this newsletter. Public schools on beautiful Oregon Coast have immediate openings for innovative, collaborative teachers with licensure and education experience with students with significant The Community Imperative: disabilities.
A Refutation of All Arguments in Support of Institutionalizing Anybody Prefer skills in augmentative/ Because of Mental Retardation' alternative communication, behavioral analysis including communication functions, In the domain of Human Rights: positive behavior All people have fundamental moral and constitutional rights. intervention, supports for +These rights must not be abrogated merely because a person has a inclusion, functional mental or physical disability. assessment/instruction, Among these fundamental rights is the right to community living. curricular modification, and transdisciplinary service delivery. In the domain of Educational Programming and Human Services: All people, as human beings, are inherently valuable. +All people can grow and develop. +All people are entitled to conditions which foster their development. +Such conditions are optimally provided in community settings. Contact: South Coast ESD There fore: 1350 Teakwood In fulfillment of fundamental human rights and in securing optimum Coos Bay, Oregon developmental opportunities, all people, regardless of the severity of 97420 their disabilities, are entitled to community living. Phone: 541-269-4520 TDD: 541-269-1611 A more accessible version of this statement, developed by self-advo- E-mail: cates in March 2000, is available, and can be viewed at the Center on [email protected]. Human Policy's web site: http://soeweb.syredu/thechp/ k 1 2.or.us community_statement.html
,N14,c. PAGE 19 TASH Newsletter, June/July 2000 1999 CONFERENCE KEYNOTE ADDRESS
Excerpts from 1999 to die was based on her suffering from tions should decide that the defective has her cerebral palsy rather than any no future or hope of one, then I believe it TASH Annual Conference temporary despair caused by her recent is a merciful and kindly thing to relieve Keynote Address by traumas. that defective, often tortured and con- Diane Coleman vulsed, grotesque and absurd, useless and We held a disability rights rally to foolish and entirely undesirable of the protest. No one would want to help agony of living." Elizabeth commit suicide if she were nondisabled. But no one listened to us. Kennedy was not proposing anything The press was all over it the same new or shocking. In fact, his article was press that doesn't cover our struggle for focused on just what part of the Nazi freedom and civil rights the same CT4 program should be adopted in the press that tells us we have no dignity if United States. T4 was the code name for we need personal assistance. Elizabeth the extermination program of people said she wanted to die to have dignity with disabilities under the Nazis. It's also and that was news. The court found that no accident that the activities of the she should have a so-called "right to die," Third Reich and Kennedy's recommenda- but the case had taken a couple of years. tions were in agreement. The United So, by then she didn't do it and she's still States had mandatory sterilization laws alive. on the books in over 25 states before Germany, and the same influential Under the assisted suicide bill currently professionals and reformers pushing pending in New Hampshire, which those laws were already discussing the applies to almost everyone with an feasibility of a mercy killing protocol and lat's an honor to be invited to speak to incurable condition, not just terminal, how it should be implemented. While the some of the toughest in-the-trenches Elizabeth would have been eligible for United States condemned other activities dvocates ever known about the doctor-assisted, guaranteed successful of the Nazi killing machine, American growing threat of the euthanasia move- suicide and she would have had only a prosecutors and judges at Nuremburg ment, to not only our core civil rights two week waiting period, not two years, failed to label the killing of disabled principles but our very lives. As we workto get over it and change her mind or she people as crimes against humanity. on day-to-day battles enforcing our hard would be dead. Until recently, the most won civil rights, we may be at risk of public face of the euthanasia movement In 1989, the U.S. Civil Commission losing the war. If we're not careful we has focused on assisted-suicide for issued a 153 page report entitled Medical may be taken by surprise. people who are terminally ill and who areDiscrimination Against Children With conscious, deemed competent and Disabilities. Among the information I first became involved in the assisted appear to make a voluntary choice. I considered by the Commission in suicide issue in 1985. 1 was a lawyer in usually spend most of my speeches reaching its findings was an experiment Los Angeles serving on the Board of the talking about how its about disability conducted from 1977 to 1982 by four Disabilities Rights Organization and I got too, not just terminal illness and how it doctors and a social worker at the a call asking me to spend my lunch hour isn't very voluntary if society won't pay Children's Hospital of Oklahoma. The at a rally.It was about a 26-year-old for your personal assistance, your doctors developed a quality of life woman with cerebral palsy named transportation or your education. But, formula which took into account the Elizabeth. At the age of 10, she had been more and more lately, non-voluntary natural endowment of babies with spina put in an institution but she had gotten euthanasia is becoming an open topic of bifida, as well as the socio-economic out. She used a wheelchair. She went to discussion, I should say an open topic status of the babies' families. The doctors college. She got married. She was going again. Let me offer a little history. used the quality of life formula to to have a baby but then she had a determine which families they would miscarriage. In a short time, her mar- In 1942, Foster Kennedy wrote an article advise to provide a relatively simple life- riage broke up. Her brother died in a in the American Journal of Psychiatry saving medical procedure and which drowning accident. Her mother got entitled "The Problem of Social Control of the families they would advise to let the baby cancer. So she went to a hospital and she Congenital Defective, Education, Sterilization, die. Without being told they were part of wanted help to starve herself to death. Euthanasia." He said "I believe that when a study, better-off families were provided The hospital refused, but a lawyer took the defective child shall have reached the a realistic and optimistic prognosis of her case. He was the co-founder of the age of five years and a competent medical their child's potential, while poor families National Hemlock Society and he found aboard on the applications of the guard- psychologist to say that Elizabeth's desire ians of the child and after three examina- Continued on page 21 PAGE2ti 2 6 TASH Newsletter, June/July 2000 1999 CONFERENCE KEYNOTE ADDRESS
Excerpts from 1999 responses are nothing but those of a this case. In Canada, they openly Conference Keynote Address trained animal. support Lattimore. One of the founders by Diane Coleman of the group Dying With Dignity has Policies are also evolving in hospitals. been quoted in the press as calling Continued from page 20 With the support and guidance of the disability activists meddlers and saying American Medical Association, many that the family has suffered enough. individual hospitals are developing and Another person was quoted in a 1994 were provided a pessimistic picture. expanding guidelines which allow New York Times article as asserting that Four out of five poor families accepted doctors to withhold treatment against the Lattimore's original sentence was uncon- the doctors' advice and 24 babies lost express wishes of a patient or their scionable since Lattimore and his wife their lives. family. Tracy Lattimore was 12 years old. had already served a sentence of 12 years, She had severe cerebral palsy and was the length of Tracy's life. The press never In 1990 the U.S. Supreme Court broadly unable to speak. She was known to be asked what does Tracy's death have to do expanded the conditions under which able to enjoy activities and friends in with voluntary assisted suicide the life could be terminated through the spite of chronic pain that she experi- supposed purpose of the organization. denial of medical treatment, and the law enced in her hip. In 1993, Robert Two years ago, on December 3, 1997, the has continued to evolve through both Lattimore, a farmer in Canada, stayed Hemlock Society USA issued a press state legislatures and the courts. Right home with his daughter, Tracy, while the release in regard to mercy killing and now, in California, an appellate case is rest of the family went to church. He non-voluntary euthanasia. Hemlock has pending involving a man with head carried Tracy to the barn, put her in the been the most influential lobbying injuries who can't speak but understands front seat of his truck, started the truck, organization for assisted suicide in the and responds to simple requests and piped the exhaust into the cab, closed theU.S. In the release, Hemlock director moves about in his motorized wheelchair.barn doors and left her there. Once she Faye Gersh said that alleged mercy Robert Wenlend was placed on a feeding was dead, he carried her body back to the killing should be treated as special crimes tube due to swallowing difficulties. For house and put the body in bed. He of compassion and evaluated separately. the last few years his wife has been informed the family and authorities that She also said that families should be able opposing rehabilitation and trying to get she had apparently died in bed. Fortu- to obtain a court-approved euthanasia of the feeding tube withdrawn to kill him. nately, the coroner was somewhat a demented parent, a suffering, severely The man's mother and sister oppose the suspicious and performed an autopsy. disabled spouse or a child if that life is wife which is why the case is in court. Once confronted with the evidence, too burdensome to continue. The lower court judge told the wife that Robert Lattimore confessed to the he was sorry but, Wenland was not in a murder. He claims to have killed Tracy In his latest book, Derrick Humphrey, the coma and California's legal standards for for her own good. Hemlock Society co-founder, best known a family member to stop a feeding tube for his earlier book Final Exit, wrote: were not met. The wife was trying to Almost immediately the press seemed to "The right to die is but one element of a push the legal envelope. She says even if embrace Lattimore's sincerity and his larger set of medical, cultural, legal and her husband was able to clearly articulate assertion that the killing was an act of economic issues that have converged in his wish to live, that she should be love. Robert Lattimore's first trial response to the extraordinary capability allowed to kill him because as far as she resulted in a conviction for second degreeof medical technology to extend life. In was concerned, he died in the accident. murder which carries a mandatory 10 attempting to answer the question 'why,' Her attorney says Robert Wenland's year sentence in Canada before parole one must look at the realities of the can even be considered. This resulted in increasing costs of healthcare in an aging a loud public outcry that this was too society because, in the final analysis, extreme a sentence. Due to possible economics, not the quest for broadened improper behavior by authorities in individual liberties or increased au- The idea that people questioning perspective jurors in the first tonomy, will drive assisted suicide to the with disabilities are not trial, Robert Lattimore's conviction was plateau of acceptable practice a duty worthy of society's acceptance overthrown. Fortunately, there was a to die." Now all we need is an ethical or resources is not new But second trial and the jury rendered the justification to back up economic and for the first time in history, same verdict, but the sentence has been compassion arguments. people with disabilities are appealed again and he is still free. organizing our community to The chair of the National Bioethics fight back to demand the equal What a contrast to the Susan Smith case Advisory Commission is the president of protection of the law. here in the United States.It's important Princeton University. He spent the last for people to know the role that pro- assisted suicide groupsrhy7layed in Continued on page 22 PAGE 21 TASH Newsletter, June/July 2000 1999 CONFERENCE KEYNOTE ADDRESS
Excerpts from 1999 mentally retarded, demented, persistent Conference Keynote Address vegetative state and severely brain by Diane Coleman damaged are likely to have that judge- ment applied to them. Singer claims that The euthanasia movement is a Continued from page 21 some people with these labels are not worldwide political movement with persons. The euthanasia of people whose an agenda that includes the killing minds are judged inadequate would be a of people with disabilities, young decade recruiting someone to fill a chair way to save money. It would be a way to and old, terminal and non-terminal, in bioethics funded by the Ira W D'Campallow families to move on and it would adults and infants, voluntary and Foundation. This year Princeton hired provide a source of organs for transporta- non-voluntary. Peter Singer. This semester Singer is tion to people whose minds are judged to teaching from his book Practical Ethics be acceptable. and Rethinking Life and Death. Accord- ing to Singer, to be ethical we must treat According to Singer, very often people all persons according to moral guidelines,with cognitive disabilities should be but not all human beings are persons. killed. In the popular press such as in Singer claims that in order to be persons New Yorker magazine or Newsweek, has absolutely no place in American and to deserve moral consideration, Singer claims that all he's doing is openly society or academia. Taken in or out of beings must be self-aware and capable of talking about what most people think. context, Dr. Singer's position and writings perceiving themselves as individuals Considering everything we go through to regarding the value of lives of people through time. Singer claims that no secure our rights on a day-to-day basis, with disabilities are outrageous. They are newborn infants are persons. He claims we should not really be shocked and we bigoted, hateful and fly in the face of that some people with lifelong cognitive should certainly not think that the press everything our society and our national disabilities never become persons at any and the public will resist Singer's influ- policy speaks for its constituencies. So time throughout their lives and he claims ence on bioethics or on public policy, nor far, the following national disability that some people who acquire cognitive should we think that our political friends rights organizations have joined Not disabilities through injury, Alzheimer's in the civil rights and social justice Dead Yet in opposing the legalization of disease or other means, cease to be communities will easily come forward in assisted suicide and euthanasia: The persons. It may be all right according to our defense. In fact, these friends have National Council on Independent Living, Singer to kill infants. Singer is quick to been swayed by a lazy and biased press The Council on Disabilities, ADAPT, note that it is still illegal to kill most into thinking that euthanasia is a progres-Justice for All, TASH, The National infants for other reasons. But, infants sive social cause. Spinal Cord Injury Association, The with known disabilities, especially World Association of Persons With cognitive disabilities, he says, do not Last week I spoke about home and Disabilities, The World Institute on bring the same amount of happiness into community-based services and Olmstead Disabilities and, I am happy to hear for the lives of their parents. Additionally, at a universal healthcare conference, the first time announced, the addition of the very fact that some people are while in a concurrent session a woman our 10th national organization, The disabled means that they will have supported euthanasia in the same breath Disability Rights Education and Defense unhappier lives than other people and, as reproductive rights. If we do not Fund. therefore, the reasons not to kill non- educate and advocate against a legalized disabled infants do not apply to disabled duty to die, if we allow ourselves to be In Credo for Support, Norm Kunc and infants. Singer suggests that it should be broadsided by the euthanasia movement, Emma Vandercliff remind us that legal for parents to decide to have their then in the words of Norm Kunc on this throughout history people with physical disabled infants killed up to 28 days after issue, we will be building snowmen whenand mental disabilities have been birth. This way, he says, parents could an avalanche is coming. abandoned at birth, banished from have non-disabled replacements. In society, used as court justers, drowned addition, the infants would provide a In terms of advocacy I have a few good and burned during the inquisitions, source of organs for transportation to things to report. Last month, Paul gassed in Nazi Germany and still con- other infants who could grow up to be Marchand, on behalf of the Consortium tinue to be segregated, institutionalized, non-disabled. It may also be all right for Citizens With Disabilities, sent a tortured in the name of behavior manage- according to Singer to kill people whose letter to the president of Princeton ment, abused, raped, euthanized and doctors claim they are severely University. In it he said CCD joins Not murdered. The euthanasia movement is cognitively disabled. Dead Yet, Justice for All and many other a worldwide political movement with an groups in conveying the view that the Although Singer doesn't give a list, we dangerous and barbaric views of Peter Singer regarding infants with disabilities 1 0 know that people with labels such as (.) Continued on page 23 PAGE 22 TASH Newsletter, June/July 2000 1999 CONFERENCE KEYOTE A eRESS
Excerpts from 1999 Conference Keynote Address by Diane Coleman Continued from page 22 A DREAM agenda that includes the killing of people with disabilities, young and old, terminal IS and non-terminal, adults and infants, voluntary and non voluntary.
The idea that people with disabilities are REALIZED not worthy of society's acceptance or resources is not new We see this form of hatred throughout history often masked The World Congress & Exposition on Disabilities (WCD), a as benevolent. But, for the first time in precedent-setting international conference and trade show history, people with disabilities are three years in the making, will take place at the Georgia organizing our community to fight back to demand the equal protection of the International Convention Center in Atlanta, November 10- law. Our expression of this demand put 12, 2000. The WCD is intended to educate, inform and Jack Kervorkian in jail. But the greater provide a useful exchange of ideas for people with disabili- fight lies ahead in the next millennium. ties and special healthcare needs and those involved in their People with disabilities have an opportu- care and development. Opinion leaders in medicine, educa- nity to lead society from the isolation and despair of today into a recognition of tion, research, technology and product development will belonging, interdependency and commu- gather along with caregivers and families for an intensive nity for all. Please come to the Not Dead learning experience focused on the needs of all people with yet workshop Saturday. Visit us at our disabilities. booth. Find out what you can do to help support and join us in the fight for our lives before it's too late. Thank you. Seminars on three tracks (Track 1 is designed for physicians, OTs, PTs, SLPs; Track 2 is for the education community; and r Track 3 is designed for direct support professionals, families, caregivers and people with disabilities) are being planned to Diane Coleman has worked as an best serve the show's expected 8-10,000 attendees. The organizer for ADAPT and founded Not entire curriculum has been developed by a Steering Commit- Dead Yet, a national grassroots disability rights organization leading the disability tee made up of leaders in medicine, science, the government, community's opposition to the legislation the private sector, non-profit organizations and associations, of assisted suicide and euthanasia. educators and families, and is being produced under the auspices of the EP Foundation for Education, Inc., a J 501(c) (3) non-profit organization.
In addition to the conference program, the event will provide an opportunity to examine the latest products and services from hundreds of exhibitors. The conference will also feature a career fair, as well as a number of Activity Centers, de- signed as interactive, educational and fun.
MARK YOUR CALENDAR NOW FOR NOVEMBER 10-12, 2000. FOR COMPLETE INFORMATION, VISIT VVVVW.WCDEXPO.COM OR CALL 877-923-3976.
PAGE 23 TASH NewsleHer, June/July 2000 JUNE/JULY 2000
The Serena Merck Memorial Award For Innovation and Dedication in practice
Gurpose of the Award The Serena Merck Memorial Award is given annually to an exceptional individual who has demonstrated 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 individuals 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 Awardee Prospective 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) Demonstrates 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-nominations 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 15, 2000 to: Mr. Frank 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 17th Annual National Association for the Dually Diagnosed (NADD) Conference held November 1-4, 2000, in San Francisco, California. The awardee's travel expenses to the conference will also be covered.
ARE YOU A UNIVERSITY PROFESSOR?
TASH has a Student Membership Program!
The program was developed through discussions with professors who wanted to encourage professional identity through student membership in a strong advocacy organization while assuring that their students had access to enough issues of JASH for them to be able to complete a variety of journal article review and comparison exercises they assign.
The package works like this:
Professors can either assign TASH membership as one would a text book or package of readings, or can offer it as an option. Either way, if ten or more students join, they receive a discount off the already low associate member rate. The discount amount increases as the number of students signing up increases.
Regardless of how many students join, TASH provides a year's worth of back issues of the journal to all students signing up under this plan. This means your students will start the semester with a year's worth of cutting edge research on their shelf and can build their collection over the years to come. Under this plan, students receive all of the regular member- ship benefits during the coming year in addition to an extra full year's worth of journals!
An introduction to TASH is likely to be one of the most valued resources you can offer students as they enter the disability community in their professional capacities. To receive materials or to learn more about TASH's Student Membership Program, contact Rose Holsey, 410-828-8274, ext. 100 or e-mail: [email protected]
PAGE 24 1 3OTASHNewsletter, June/July 2000 0004 EPPIMTIWIMEOZ OLD OUPPg[24131) ERZIPIMMEL:74 PLIC)*,RAM
Cost EffectIveness of Supported Emplloyment Programs: What We Need to Do to Improve Outcomes
Supported employment is one tors include intensity of service, length program specifically designed of follow-up, rapid job search proce- to assist persons with the most dures, integration of vocational and significant disabilities to achieve treatment services, and placements competitive level, community based on consumer preferences and integrated employment. Supported needs. Interviews have been completed employment first received public with 42 providers in 3 states. The funding thought the Rehabilitation variation in ratings on this scale suggest Act Amendments of 1986. It has unequal implementation along quality enjoyed steadily increasing popular- dimensions, which in turn may relate to ity since its inception and has program effectiveness and serve as an achieved carefully documented upper bound on cost effectiveness. A positive outcomes (Mank, O'Neill, & BY GRANT REVELL, JOHN KREGEL, program that is not effective in helping Jensen, in press; Revell, Wehman, AND PAUL WEHMAN people obtain employment cannot be Kregel, West, & Rayfield, 1994). cost effective. persons with significant mental illness The major premise of a supported Regarding case mix, it is clear that costs (Cimera & Rusch, 1999; Clark et al, employment program is that many vary widely according to intensity of 1996). However, we propose to take a persons with significant disabilities services provided, which in turn is closer look at recommendations for need some additional support at the likely to vary widely as a function of promoting more cost effectiveness in jobsite in order to work successfully. severity of disability. Our research supported employment. Through the use of employment continues to seek the best indicators of specialists, mentors, co-workers and case mix. This section presents further information employers, the impediments to on the size and outcomes of the sup- employment faced by prospective With regard to vocational outcomes, we ported employment program by provid- workers are reduced, and their have found that different outcome ing FY 1995 data collected from state abilities and work potentials are measures are not always highly corre- rehabilitation and other state level emphasized through supports lated. If the vocational rehabilitation agencies funding supported employment designed at the workplace. Despite (VR) closure rate is used as the primary services in each of the 50 states in the the demonstrated success and value indicator of performance, then it will country. of this model and research that not necessarily lead to desired job tenure outcomes. In our pilot research, confirms its efficacy (e.g., Bond, Cost-Effectiveness of Supported Dietzen, McGrew, & Miller, 1995; Employment Related to Meaningful those programs that emphasize voca- Drake, McHugo, Becker, Anthony, & Employment Outcomes tional planning and long-term support Clark, 1996; Coker, Osgood, & had better job tenure. However, these Clouse, 1995), supported employ- same programs did not have the highest The assessment of cost-effectiveness of ment has not yet been fully utilized VR closure rates. In other words, supported employment programs can choice of employment outcome to impact the thousands of people best be understood in the context of with disabilities who remain unem- indicators is a critical decision that systematic assessment of (1) program impacts the evaluation of a program's ployed. services, (2) case mix, and (3) vocational cost-effectiveness. (Bond et al, 1999). outcomes. Regarding program services, One area which has not been studied many providers offering supported closely enough in supported employ- Future direction needed for this employment fail to provide services that ment has been the cost effectiveness research is to inquire into the validity of exemplify the critical ingredients of of the program. Supported employ- the QSEIS and employment indicators supported employment. Bond (1999) ment has shown that it is cost- to better understand what services are has developed an instrument, known as efficient in comparison to alternative effective, with which clients, and for the Quality of Supported Employment programs models, such as sheltered which outcomes. Validation requires a Implementation Scale (QSEIS), which employment for person with devel- assesses programs on 33 behavioral opmental disabilities and rehabilita- indicators via a brief interview. Indica- tive day treatment programs for Continued on page 26 1 ° 1 PAGE 25 TASH Newsletter, June/July 2000 COST EFFECTIVENESS OF SUPPORTED EMPLOYMENT PROGRAMS
COST EFFECTIVENESS OF staff. Students were recently asked to in poorer quality job matches and SUPPORTED EMPLOYMENT post questions on funding difficulties tenuous job security. The provider PROGRAMS: What We Need to they are experiencing related to persons rejected this funding proposal. Program with the most significant disabilities. Do to Improve Outcomes improvements are needed in supported Here are two representative postings: employment that fairly match costs to Continued from page 25 outcomes, leading directly to funding (1) My experience has been that our VR designs that balance the desire of funding agency feels that persons with significant agencies for cost efficiencies and the sufficiently large data base to obtain disabilities and persons with develop- need of persons with the most significant interpretable patterns of relationships. mental disabilities are a risk to open disabilities for quality services and Cost effectiveness can than be tied to eligibility on. The VR program is so tied supports. these indicators. The SEC has been to outcomes of closures of success that sampling in widely diverse service there is a resistance to eligibility. Here is a final example, one that occurs settings to enhance the external validity at the state level: Last fiscal year, a state of this methodology. Research can adapt vocational rehabilitation agency had a this instrument for use as a checklist that (2) Probably the biggest obstacle that we severe fiscal crisis. The agency, with can be used by family members and have come up against in getting funding minimal lead time, implemented a consumers for making informed deci- for individuals with significant disabili- results-based funding design for sup- sions about services, especially as we ties is getting vocational rehabilitation ported employment that replaced an move toward voucher systems in which funding. VR funding is so limited that hourly fee program. The supported consumers have a choice among provid- most of the monies available go to more employment state VR program manager ers. The Quality of Supported Employ- readily employable people. VR agencies asked consultants to help review the ment Implementation Scale (QSEIS) can seem to be in a pinch of sorts and are recently implemented new system and to be a highly useful tool to quantitatively more willing to help the people who are point out possible improvements.State connect quality supported employment ready to go to work right away with little VR agencies are aggressively seeking to outcomes with cost effectiveness. accommodations. These responses point redesign funding methods for supported directly to the ongoing struggle of VR to employment. The efficacy and impact of Cost-Effectiveness of Supported effectively allot resources to services for these designs need evaluation. A trial Employment Related to How persons with the most significant and error approach to these funding Funding Agencies Purchase Services disabilities. Funding designs are needed methodologies will only compound the that match efficient use of funds to documented difficulties VR is already It is essential to ground a discussion of securing competitive employment experiencing in providing supported cost effectiveness related to funding outcomes for persons with the most employment services to persons with the methodologies in the day-to-day realities significant disabilities. most significant disabilities in a cost faced by state agencies, providers, and efficient and effective manner. individual job coaches working with One must also review this issue at the funding and cost issues. For example, provider level. A provider agency asked Preliminary Findings on Key Charac- consider this issue at the job coach level. recently for help in evaluating a results- teristics of Successful Funding Inge (1999) has recently run a Web- based, fixed price funding contract Designs based course on supported employment. proposal being offered by a local (non- This course was targeted to direct service VR) funding agency. The provider was Results-based funding designs are being concerned that the proposed outcomes implemented that clearly identify the payments would not cover the true cost desired employment outcome, define the of services required by the population. quality indicators that substantiate the Program improvements are Subsequently, it was determined that the achievement of those outcomes, and needed in supported employ- contract did under-fund the necessary establish a payment schedule specific to ment that fairly match costs to services. The funding agency pushed outcomes achieved. Research completed outcomes, leading directly to cost efficiency (controlling costs) at the to date on achieving a balance between funding designs that balance expense of effectiveness (quality of SE cost efficiency and effectiveness in the the desire of funding agencies outcome). If the provider entered into funding of supported employment for cost efficiencies and the the contract, covering costs would mean services points directly to the importance need of persons with the most the staff of this agency would have to of five specific characteristics of success- significant disabilities for "cream" (only provide services to those ful funding designs (Novak et al, 1999). quality services and supports. individuals who required the least These five areas are assuring collabora- supports) its referral pool and/or cut back on service quality, usually resulting Continued on page 27 PAGE 26 13 2TASK Newsletter, June/July 2000 COST EFFECTIVENESS F SUPPOiTED EMPLOYMENT PROGRAMS
COST EFFECTIVENESS OF definition of key intermediate outcomes, High consumer satisfaction with the SUPPORTED EMPLOYMENT and incorporation of incentives to model of service delivery encourage services to frequently un- PROGRAMS: What We Need to served and underserved populations. Potential for flexibility and Do to Improve Outcomes However, both Community Based customization of services Continued from page 26 Employment Services (CBES) and Milestones are firmly grounded in the Reimbursement based on perfor- tion by key stakeholders, setting pay- five principles presented below and both mance outcomes ments that truly cover the cost of have documented success in improving services, tying payments to valued the cost effectiveness of supported Increased numbers of consumers outcomes, emphasis on participant employment services from the perspec- enrolled in this model of service delivery choice and self-determination, and tive of a funding agency (O'Brien & avoiding disincentives that discourage Cook, 1998; Massachusetts Rehabilita- Inter-agency collaboration, including access to SE for persons who face the tion Commission, 1998). Impact cost-sharing of services most significant employment challenges. evaluations of the Oklahoma Milestones These characteristics are described in program document improved cost High levels of communication Table 1, below efficiencies with no loss in effectiveness between provider and state agencies Provider and state agency satisfac- Table 1: Critical Characteristics of Successful Results Based Funding tion with component structure Designs Provider and state agency satisfac- Balance the interests of key stakeholders through collaboration: The challenge is tion with rate structure to balance the interest of outcomes at a reasonable cost. Case studies in Alabama and Oklahoma point directly to the critical importance of early involvement by all stakehold- The inter-agency collaboration referred ers. to in the CBES results summary includes shared funding for coverage of extended Insure that funding levels are workable for providers of service. Attention is employment services following comple- needed to the spacing and weighting of payment points, inclusion of proactive assess- tion of VR funded time-limited services. ment job planning stategies, including in payments costs associated with participants Both OK and MA, using different who fail to reach key benchmarks, replacement of participants who lose jobs or seek career-oriented job changes. approaches to results based funding, have successfully matched payment Tie payments to the achievement of valued performance measures: Focus on schedules to participant outcomes in a increasing the number of people who have quality jobs by defining outcome-oriented manner viewed by the funding agencies performance measures (i.e.: degree of employer and consumer satisfactin, employment as cost effective. Clearly, the accom- retention, wages and benefits). plishments reported by both Massachu- setts and Oklahoma reflect the type of Emphasize individualization, flexibility and choice: Support responsiveness to the cost effectiveness improvements sought individual participant by evaluating achieved work outcome against identified job by RSA, VR, and other SE funding interest, acceptable geographic location, wage and benefit reuirements, and work schedule. agencies.
Avoid creating disincentives to serving people with the most significant disabili- How then can vocational rehabilitation ties: Utilize options such as tiered payment levels or incentive payments that help assure promote improvements in the cost access to services by the more highly challenged. effectiveness of the supported employ- ment program in terms of the quality of employment outcomes in relation to the costs to achieve these outcomes? The States such as Massachusetts and Okla- as measured by participation of the most keys to improving cost effectiveness are homa have developed results-based highly challenged population, reduced found in two areas. First is the purchase funding programs. The Community waiting lists, reduced time to employ- of service relationship between VR and Based Employment Services (CBES) ment for persons in job development, its provider agencies from whom it system used in Massachusetts (MA) and and increased numbers of successful secures supported employment services. the Milestones system used in Oklahoma supported employment outcomes. The The second area is the collaborative (OK) take substantially different ap- evaluation of the impact of the Massa- relationship between VR and funding proaches in key areas such as use of fixedchusetts CBES program reported the following results: (MA) versus negotiated (OK) rates, 133 Continued on page 28 PAGE 27 TASK Newsletter, June/July 2000 0004 EMEIMIWEIX11300 (DP OUPPOCIVEID EGYED11,CYMERT RAM
COST EFFECTIVENESS OF ing Community-Based Rehabilitation SUPPORTED EMPLOYMENT Programs. Grant Revell is Project Director of the National Supported Employment Consor- PROGRAMS: What We Need to Drake, R., McHugo, G., Becker, D., tium, a project funded by the Rehabilitation Do to Improve Outcomes Anthony, W, & Clark, R. (1996). The Services Administration to identify and Continued from page 27 New Hampshire study of supported disseminate information on the best practices in supported employment. employment for people with severe mental illness. Journal of Counseling John Kregel is with the Rehabilitation sources for extended supported employ- and Clinical Psychology 64(2), 391-399. Research and Training Center on Workplace ment services. Future efforts to improve Supports at Virginia Commonwealth cost effectiveness of the field application University. Inge, K.J. (1999). Supported Employ- of supported employment should be Paul Wehman, Ph.D., is Professor in the targeted specifically to these two primary ment WEb Based Certificate Series. Available [On-Line]:http:// Department of Physical Medicine and areas. Rehabilitation, Medical College of Virginia, www.wcb.vcu.edu/wcb/schools/ALH/reh/ and Director of the Rehabilitation Research kinge/3/index.html References and Training Center on Workplace Supports, Virginia Commonwealth University. Bond, G. R., Picone, J., Mauer, B., Mank, D., O'Neill, C., & Jensen, R. (in Fishbein, S., & Stout, R. (1999). The press). Quality in supported employ- Comments concerning the information Quality of Supported Employment ment: a new demonstration of the contained in this article may be directed to capabilities of people with severe Grant Revell at 804-828-6989, or you may Implementation Scale. In G. Revell, K. J. send an e-mail to
The National Supported Employ- David Mank analyze the evidence of ment Consortium Project (SEC) systems change in supported employ- for the competitive employment ment to date and the factors influencing of people with significant disabilities ish.., that change. Gary Bond and his research midway through its third year. The SEC REPORT ON THE team describe the initial results of their is a research and technical assistance research efforts targeted at designing a effort funded by the Rehabilitation PRELIMINARY FiNdiNgs of--.<1quality of supported employment implementation scale that will help Services Administration and adminis- THE NATIONAL SUppORTEd tered by the Virginia Commonwealth generate more meaningful employment University Rehabilitation Research and EmploymENT outcomes. Susan Foley and her co- authors evaluate state-level interagency Training Center on Work Place Supports. CONSORTIUM Study '21 Consortium members include the collaborative efforts in supported Indiana University Institute on Disability employment with a focus on exemplary and Community, the Boston Children's BY GRANT REVELL -44practices. Hospital Institute for Community Inclusion, Transcen Incorporated, the In the area of evaluating policy initiatives University of Montana Rural Institute on influencing supported employment, Disabilities, and a number of national A Martha McGaughey and David Mank experts including Gary Bond at Indiana describe the policy framework within University Purdue University which systems change takes place, and Inidianapolis. Jeanne Novak and her co-authors identify the many public initiatives The SEC is conducting research in a The SEC recently published a research currently taking place nationally influ- number of areas critical to the growth monograph titled "The Impact of Supported encing the move to more results based and effectiveness of supported employ- Employment for People with Significant funding designs. ment. Areas of research include: state- Disabilities: Preliminary Findings from the wide systems change; extended sup- National Supported Employment Consor- Finally, in the critical area of improving ported employment services; cost tium." The fifteen papers contained in supported employment services and effectiveness; meaningful employment this monograph reflect the breadth and outcomes, Katherine Inge and her co- outcomes; natural supports; employer depth of the SEC's evaluation activities authors evaluate the results of a demon- impact; use of personal assistance and its intent to frame results in a stration project that assisted individuals services at the work place; and strategies practical, best practice oriented view- with very significant physical disabilities to provide competitive employment point. The papers in the monograph to secure work competitively. They also opportunities to unserved and address supported employment issues provide a number of best practice underserved populations. The SEC is and practices in four areas. recommendations. Ed Turner and his co- actively disseminating both the results of authors provide insight into the chal- the research studies and information on First, in the area of current trends and lenges faced in securing and self- exemplary practices. future directions, Paul Wehman and John directing Personal Assistance Services at Bricout identify and analyze the full the work site for persons who need this Over the last year, the SEC has con- range of employment supports needed by support to work competitively. Cary ducted a series of national training persons with the most significant Griffin evaluates the factors influencing sessions and published a variety of disabilities. Jeanne Novak, David Mank, the provision of supported employment newsletters on best practices, sponsored aGrant Revell and Dan O'Brien describe in rural areas and provides numerous Summer Institute where direct service the national trend towards more results best practice recommendations for staff received 5 days of intensive training, based funding of supported employment, improving the quality and effectiveness initiated a web-based certificate course and provide numerous recommendations of these services. Darlene Unger reports that provides interactive training on for agencies considering this funding on the results of research on how supported employment, worked hand-in-approach. Valerie Brooke and her co- employers view workplace supports. Pat hand with rural communities to develop authors describe the implementation of a Rogan and her co-authors describe a supported employment opportunities, results based funding design in Alabama qualitative research effort to evaluate co-sponsored forums on conversion and that incorporated intensive in-service workplace supports in practice with self-employment, and provided a wide training on quality supported employ- emphasis on maximizing supports variety of prescriptive technical assis- ment services. available at the job site. tance that matched national experts to state and community level requests for In the area of improving state level implementation, Martha McGaughey and assistance. Continued on page 30 PAGE 29 1 3 5TAM Newsletter, June/July 2000 NATIONAL SUPPORTED EMPLOYMENT CONSORTIUM
REPORT ON TliE PRELIMINARY FiNdiNgs of TITE NATIONAL Are you looking for SuppoRTEd EMPLOYMENT CONSORTIUM STudy comprehensive Continued from page 29 staff development Paul Wehman and John Bricout conclude options for your the monograph by discussing the blending of practices identified as natural district personnel? supports into a workplace supports model of supported employment ser- vices. Let LRConsulting assistyou. This first monograph published by the National Supported Employment Consortium describes the initial set of LRC offers resources for results from a wide variety of evaluation studies that are works in progress. The paraeducators, partner monograph's range of authors and topics teachers, administrators, reflect the comprehensive nature of the SEC evaluation effort. The SEC is assessment personnel, designed to provide a steady flow of information on critical issues and best and parents. practices, and future dissemination efforts will continue to use a variety of ©Paraeducators: LifeLines in the written, web-based, and face-to-face Classroomsix training modules for methods to assure wide dissemination of new and returning paraeducators information on SEC evaluation efforts. ©Melding a training module and guide for partner teachers working with paraeducators Additional information about the monograph and 44.©Triplicityan administrator's guide other SEC activities may be 4' to mentoring paraeducators obtained from Grant Revell, ©Maxim a guide for linking SEC Project Director, by calling (804) 828-6989 or functional-contextual assessment you may send an e-mail to to instruction [email protected] ©Students Firsta training module for parents as partners in the Special Education process Visit our web site or call to learn more Grant Revell is Project Director of the about ordering materials, our training- National Supported Employment Consortium, a project funded by the Rehabilitation Services of-trainers workshops, and hosting Administration to identify and disseminate a TOT in your district. information on the best practices in supported employment. www.lrconsulting.com PMB 747 POB 6049 Katy, TX 77491-6049 (4 PH: 281-395-4978 Fax: 281-392-8379
PAGE 30 1 3 E')TASK Newsletter, June/July 2000 JUNE/JULY 200
king for Information on Self Determination? Participant-Driven Supports? This new curriculum is the SANTA BARBARA resource you need. County Education Office By John Agosta, Kerri Me lda & William J. Cirone, Superintendent Cathy Terrill Includes easy-to-read and What You Need to Know thorough descriptions of About Participant- service systemshow they Driven Supports work and how they're funded. Self-determination and Human Services participant-driven supports are Research Teaching Opportunities in Institute explained, as are strategies to Santa Barbara County analyze state systems & create change. This is a great resource for self-advocates, familymembers, Work on California's beautiful Central Coast with a board members, direct support staff and other too! dedicated team of special educators. We offer List Price Curriculum & Overhead Masters - $179 competitive salaries and an excellent benefit package. Curriculum only - $120 Seeking experienced professionals anxious to improve Overhead Masters only - $60 the lives of children with significant disabilities/ Use Your Credit Card to Order Today! emotional disturbances.Positions available at all Call: 617-876-0426 grade levels, rural or suburban schools. Fax: 617-492-7401 Vieit nut-weheite at httn://www.hsri.oreJleaders/leaders.html Requirements Must have strong grasp of positive behavior support and core curriculum accommodation methods. Qualify iosimummimmiumu* for California special education teaching credential I I based on current credential/experience. (May require additionalcoursework/tests to renew initial I /hi,,,,, Want toget double credential). 1 1 exposurefor your Salary /Benefits 1 $31,373to$49,129 based oneducation and 1 advertising dollars? experience (1999/2000 schedule). Ten -month contract 1 year. Comprehensive, cafeteria-style benefits package. 1 ,,,,,_,,_,,,...s., 1 .4, 1 1 I Consider placing an ad in the TASH Newsletter. In addition to your printed advertisement, we will place your ad on TASH's web site at no additional cost to you! Contact: Gary Paine, Human Resources [email protected] For more information about TASH's new Online Santa Barbara County Education Office Classifieds contact Priscilla Newton, Director of Market- www.sbceo.org ing, at 410-828-8274, ext. 102 or send an e-mail to
All material submitted to TASH for publication, promotion or any other use must comply I Equal Opportunity Employer with the TASH Policy on Advertising, Publishing, Exhibiting, Disseminating/Reprinting Material and Rental of Mailing Lists. To obtain a copy of the policy, please call 1-800-482-1 8274, ext. 102. W El RIB BIM BB IBM ME NIE SIB MB! NM MI MB MI BB IIM IP BO EIS BM NB MBMB* PAGE 31 1 3 7TASH Newsletter, June/July 2000 TASHCalTEMUUDD
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Kathy Boundy, Ex-Officio diversity and quality of life for children and adults with disabilities. Executive Board Items in this Newsletter do not necessarily reflect attitudes held by individual Liz Healey, President Bob Kafka members or the Association as a whole. TASH reserves the right to exercise edi- Donna Gilles, Vice President Jay Klein torial judgement in selection of materials. Doug Biklen, Chair, Executive Committee Debra Kunz All contributors and advertisers are asked to abide by the TASH policy on the Jorge Pineda, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Joe Wykowski, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Barbara Ransom Terms such as "people with mental retardation," "children with autism," and "in- Jacki Anderson dividuals who have disabilities" should be used. The appearance of an advertise- Michael Auberger Patrick Schwarz ment for a product or service does not imply TASH endorsement. Linda Bambara, Ex-Officio Jacqueline Thousand Wanda Blanchett
G2MDIAD2110PINFORMATION
Name: Address: City/State/Zip: Telephone: ( Fax: ( ) E-mail: Is the above your work address home address other Please Check Appropriate Categories ( ) Educator/Teacher (K-12) ( ) Related Services Provider (not more than three): () Government Personnel () Self-Advocate () Administrator/Adult Services () Legal Services Provider () Social Worker ( ) Administrator/Education () Occupational/Physical Therapist ( ) Speech/Language Pathologist () Administrator/Other () Parent/Family Member ( ) Special Education Teacher/Support ( ) Adult Service Provider/Staff () Personal Assistant Specialist ( ) Advocate/Friend ( ) Professional/Public Policy Advocate ( ) Staff Developmentrrainer ( ) Behavioral Specialist ( ) Professor/Instructor-College/University ( ) Student () Case Manager () Psychologist () Supported Employment ( ) Early Childhood Services ( ) Regular Education Teacher/Administrator () Other
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TI1SH NON-PROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE Suite 210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274, PERMIT# 187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: www.tash.org
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TABLE CONTENTS From the Executive Director Page 3 2000 TASH Board Election Page 4 Criminal Offenders with Developmental Disabilities Page 11 TASH wishes to acknowledge Issues Facing Today's Victim and Offender with Mental Retardation Page 14 The Raction of People with Cognitive Dis- the generous support of our abilities to Trauma Page 18 One Family's Story of Victimization Page 21 Violence Against Women with Developmen- newest lifetime members tal Disabilities Page 22 Remembering Marsha Forest Page 24 Unequal Protection-Unequal Justice.Page 27 Law Enforcement Awareness of gin IA. Come-Huorillile9 1'enmenee Autism Page 30 911 Can Be Dangerous Page 33 ERR Hew Mal Highlights from Intl. Self-Determination Conference Page 36 Lifetime membership entitles you to full international and TASH (formerly The Association for chapter member benefits for your lifetime.The cost can Persons with Severe Handicaps) is an be remitted over several monthly payments. international advocacy association of people with disabilities, their family If you are interested in becoming a lifetime member of members, other advocates and people who work in the disability field. TASH TASH, contact Rose Holsey at 410-828-8274, ext. 100. actively promotes the full inclusion and participation of persons with disabili- ties in all aspects of life.To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. 'Whom Do 0 ,a)13D0c201.T moonam orammamm For issues of policy, chapter or committee support, or general 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, (44T11SFI call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 Stretching the boundaries of what is possible; TASH, Ext. 103, e-mail:[email protected] For questions about the 2000 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 and Member Services, (410) 828-TASH, Ext. Forging new alliances that embrace diversity; 100 or [email protected] Advocating for opportunities and rights; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Eradicating injustices and inequities; For information on marketing and promotions, permission and reprints, or newsletter submissions and advertising, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, 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: LMBl @lehigh.edu Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and litigation; The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Promoting excellence in services. 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 21 40 TASH Newsletter, August 2000 (712alia 'UNE EKIMUTIVE
form. You may vote by returning the ballot form by mail the return postage is paid by TASH using the self-mailer or in your own envelope, if you prefer.
Your ballot form can also be returned by fax to: 410-828-6706.
The complete ballot, including candidate's statements and photos, also appears on TASH's web site: MARCH FOR JUSTICE www.tash.org. Look for the "Board We're. Voting for Our Lives! Election 2000" button. All TASH 17vourto C.Doao azeownwe Dkoisagov Tuesday, October 3, 2000, L2:00 BY NANCY WEISS members can vote via the web site by entering the Ballot Control Number from Noon the ballot form on page 9 of this Newslet- U.S. Capitol grounds at Upper Senate 2000 TASH BOARD ELECTION ter. Park (north side of the Capitol) Washington, D.C. t's election time again.... notonly for Finally, each TASH member for whom the presidency of the United States we have a valid e-mail address will but for TASH's own Executive Board, receive an e-mail inviting them to vote by The date has changed, but not the need as well. The Executive Board is a group return e-mail. Even if you do not receive for your support and participation! Join of TASH members elected by you, the an e-mail from us (meaning that we do thousands of civil rights advocates for a members, to set policy, oversee the not have your correct e-mail address!), rally to support the Americans with organization's finances, and guide TASH's Disabilities Act (ADA). This Fall the you can vote by e-mail by sending a United States Supreme Court will hear overall direction and goals. There is message, no later than October 10, 2000, likely no more important decision an arguments in the case of Garrett v. to [email protected]. Remember that you University of Alabama, which calls into organization makes than the people it will need to include your Ballot Control question the constitutionality of the ADA. selects to guide its future. Number from the ballot form on page 9 The civil rights of millions of people with of this Newsletter and that any replies disabilities hang in the balance while we Because we value broad participation in containing votes for more than five await the decision. the TASH electoral process, this year we candidates will not be able to be included This is not just a case about disability are offering for the first time a range of in the final count. ways for members to vote. We are trying rights -- it is about everyone's civil rights. this as an experiment. If offering these There are no guarantees in life and anyone We hope that these voting options will may find him/herself facing the injustice various ways to vote results in broader make it easier for all TASH members to of discrimination by an employer; lack of participation in the election, we will participate in this year's elections. We're access because of a disability; or even a continue it in future years. aiming for as inclusive a process as serious illness such as cancer, asthma, or possible! Please call if you have any HIV/AIDS. Without the protections that This year there are four ways to vote: by questions about voting. The five candi- the ADA provides to guard against mail, fax, e-mail, or via our web site. A dates who are selected will be announced injustices in the workplace and commu- nity, everyone in America is faced with the Ballot Control Number has been printed in the November Newsletter. We appreci- threat of losing their civil rights. on each ballot form included in this ate your participation! Newsletter (p. 9).These numbers were applied by the printing company and we Make plans now to come to Washington, D.C. on the first Tuesday in October to have no way of matching this number join other advocates for justice and with with your name or member ID. This our combined voices, we will send a loud number is used to assure that each All completed and clear message to our elected officials member votes only once and that your ballots must be and candidates that we are "VOTING FOR vote remains anonymous. received in the TASH OUR LIVES" in this election. Central Office by Here are the four ways to vote this year: If you are unable to attend the event in Washington, D.C., contact Andrew Imparato, AAPD, at 800-840-8844 to On pages 4-10 of this issue of the learn how you can organize an event in Newsletter you will find candidate your hometown. statements and photos, as well as a ballot
PAGE 3 141 TASH Newsletter, August 2000 DCD© 1:3012121 13111M4RDI1!
serving the organization in this capacity. TASH has been a powerful voice for disability advocacy and has established strong con- sumer-professional coalitions. As an Executive Board member, Paul would '6Me advocate for policies and practices that would strengthen connections to the organization's past while building new coalitions and commitments toward realizing the goal of full ZzoomMus Aocrrcl community inclusion. Rainee Courtnage "I have been an advocate for inclusion since 1972, when my son Alex was born.I have spent the last 28 years actively advocat- YOUR ROLE IN SELECTING TASH's THE FOLLOWING ARE THE NOMI- ing for public policy LEADERS NEES FOR THE TASH EXECUTIVE which recognizes each BOARD OF DIRECTORS: individual's rightful One of the most important things place in his/her community. My deep members of any organization are asked Paul Bates commitment to social justice issues has carried me through some challenging times to do is to participate in selecting is a Professor of as a parent and as a professional. members of the Executive Board. Five Educational Psychology and Special Education at of the fifteen seats on the TASH Execu- The realization of inclusion for Alex was a Southern Illinois tive Board will be vacated at the end of long and difficult struggle for us as a family, University. For over 20 this year. This year the nominating but the circle of friends we had around us years, Paul has been a committee has selected a slate of eleven made the journey worth the effort. We had member of TASH and to fight for every change that might insure extremely committed TASH leaders. has served the organiza- that he'd have a good life. We became TASH members are asked to vote for five tion for much of that "experts" in positive behavior supports, in of the candidates whose photos and time as a member of the JASH Editorial augmentative communication, in design and statements appear in the following Board. Throughout Paul's career, he has been development of plans that would meet his pages. involved in innovative program demonstra- wants and desires as well as his needs. We tions and advocacy activities that have highlighted the capabilities of persons with have remained active in many arenas from As described on the preceding page, this legislative work, to meeting with other year, for the first time, we are offering significant disabilities. These experiences have taught Paul the absolute need for families, to just living a real life. four different ways to cast your vote -- For the past six years, I have been an professionals to listen with humility and advocate for children and families in Denver. by mail, fax, e-mail or via TASH's web respect to the wisdom of persons with site. To assure that every member votes disabilities and their families. Previously, I worked as a resource coordina- only once, a Ballot Control Number has tor for a private family support program, but been printed on each ballot form. These Recently Paul's professional interests have am most proud of my years as a volunteer numbers were applied by the printing focused on person centered transition with local Arcs and Colorado TASH since 1987. company and we have no way of planning and self-determination. In these areas, Paul has been conducting interactive matching this number with your name I served as an ARC board member in workshops involving students, their parents, or member ID. Remember that if you Montana at the time when public education and both school and post-school profession- choose to vote by e-mail or via the web was just becoming a reality, as a local and als. By learning together, the vision of an state Arc board member in Colorado from site, you will need to include your Ballot "enviable life" of community inclusion is 1981 to 1994 (five of those years as state Control Number from the ballot form on shared, collaborative relationships are president), and on the Colorado TASH board page 9 of this Newsletter and that any solidified, and true commitment is realized. in 1994-97 and again in 2000. During those replies containing votes for more than Paul feels that he would bring a strong years, I took advantage of every opportunity five candidates will not be able to be collaborative spirit to the TASH Executive to become a more informed and better Board, a spirit that should assist in building included in the final count. parent. Attending national TASH confer- bridges to people and organizations that may ences has been a great way to keep myself currently have different priorities. Your vote is important! Please choose centered and renewed. the voting method that works best for Paul is honored to have been nominated as a you. Currently, I am involved with others in the candidate for the TASH Executive Board and revitalization of Colorado TASH. Our focus feels privileged about the possibility of . Continued on page 5 PAGE 4142 TASH Newsletter, August 2000 2000 BOARD ELECTION
2000 TASH Board Election inclusive and best educational practices to realities of the complex daily lives of children, Continued from page 4 educators, family members, paraeducators, youth, and adults, their families and friends, related service providers, and administrators. their teachers and support providers. She is She shares her own experiences as a parapro- well known for the amount of time she is to bring in new members, offer events that fessional, teacher, work experience coordina- spends in classrooms, homes, and schools, inspire and energize the membership and tor, and tutor to help others avoid mistakes working to develop successful ways for tackle public policy issues.I also serve as she made, and to serve as a catalyst for individuals to communicate, gain new skills chair for Families and Allies working creating change. and supports to improve their quality of life, Together. This group organized to look at life and develop meaningful relationships and for people beyond a "systems approach" - June strongly believes in the values of TASH friendships to support their quality of life. connecting or reconnecting individuals with and has been active at both the state and their community. national levels. She was the Arizona TASH Kathy is committed to furthering progressive president for several years and is currently on policies and legislation for individuals with My focus for many years has been in the executive board of CaITASH as Vice- disabilities. She has been an advocate for promoting positive behavior supports for President. She has served and continues to numerous children and youth and their individuals in schools, and this past year as a serve on several TASH committees, including families, assisting them as they assist their member of a statewide cross-agency training Personnel Preparation, Education, and school system to realize both the spirit and team. Providing as many avenues for Integrated Leisure and Recreation, and has the letter of the law in the IDEA. Through communication as possible for individuals reviewed proposals for the TASH interna- her projects and collaborative partnerships has also been a major interest and activity for tional conference for several years. Publica- with schools at the California Research me.The past several years the systems have tions include two books and numerous Institute and at the University of Kansas, she been giving lip service to "self-determination" articles and chapters regarding inclusive has assisted many schools and districts in and "individual choice" while in reality, the education, teaching students to learn in their development toward effective supports exact opposite is happening. It is past time inclusive classrooms, and personnel prepara- and services, and inclusive schooling. Kathy that we look at funding going directly to the tion issues needed to support inclusive is active at the California state level in person. Our systems are imploding around us classrooms. developing LRE policy, an alternate assess- yet, consideration for "another way" contin- ment plan, and key performance indicators ues to elude the policy makers. I plan on June is interested in disseminating TASH for the monitoring system. being at the front on this one. values to other organizations to which she belongs, to faculty at different universities, Since her days as a teacher began in the late It is indeed an honor to be nominated for the teachers, and family members. She serves as a 70's, Kathy has been involved in numerous National TASH board.I would bring a family family advocate and is continually amazed demonstration and research projects which and community living perspective to my when families who have a member with have pioneered methods to support individu- work on the board. As a family, we have significant disabilities is unaware of TASH as als with dual sensory and multiple disabilities refused to give up and refused to listen to the an organization. Through her work with within inclusive school settings and the naysayers. All Alex's life we have heard "He'll families, school personnel, and others, she community. Kathy and her colleagues never..." Well, I'm here to tell you, "He did hopes to increase awareness of TASH and developed methods for collaborating with and he is..."! what is possible when the vision for everyone general education teachers, and strategies for is positive and builds on strengths and effective instruction within the general Inclusion, self-determination, positively dreams. June would like to volunteer her education curriculum. She has been the supporting someone all mean one thing: A energy and her commitment to serve to director of the Kansas positive behavioral Good Life. What's ordinary for you and me furthering the ideals that TASH represents. supports project, and a member of the should never be extraordinary for my child or California team of trainers for the National anyone else's.I will work hard to promote Kathy Gee Research and Training Center on Positive the vision and activities of TASH." is a lifetime member of Behavioral Supports. June Downing TASH, and has been an active member since In private life Kathy has also been active in 1977. For over 20 years her own children's local school site councils, is a lifetime member of she has worked in school and in other community organizations. She TASH and a professor at and community settings has been a strong advocate for policies and California State Univer- to promote the inclusion practices related to diversity and inclusive- sity, Northridge. She is of individuals with ness related to ethnicity, gender, and sexual committed to creating disabilities in all aspects orientation. She has directly experienced the the best learning of life. Her bold leadership in the area of results of discrimination and the outcomes of environment for inclusive schooling has been focused on the support as a staunch advocate for her two students with significant use of respectful and effective support nephews, now in their early twenties, who disabilities and their strategies which allow all children, especially experience complex health and learning peers. To do so, she maintains high standards those with the most significant disabilities, to challenges. for teachers while helping them learn how to feel honored, challenged, and successful in truly make all students, regardless of ability school as well as in community and family Kathy is currently an associate professor at St. level, active members of fully inclusive life. Kathy's work, as a teacher, teacher Mary's College in California. She is actively classrooms. June does considerable inservice educator, researcher, advocate, monitor, and involved in TASH presenting at confer- training, and has presented nationwide on professor has always been done amidst the Continued on page 6 3 PAGE5141 TASK Newsletter, August 2000 2000 BOARD ELECTION
2000 TASH Board Election support practices for people with the most 1970's, spending many years assisting Continued from page 5 significant disabilities. She feels that the individuals to win their freedom from nursing abolishment of segregated work and congre- homes and institutions and working on gate living options depends greatly on how changing the systems that kept them from ences every year, running TASH Tech well children and young adults with disabili- their communities. She has also been active sessions, evaluating TASH conference ties are educated in schools. In turn, the in the inclusive education movement since proposals, serving on the specialized health success of schooling is largely dependent on 1983, and has advocated passionately for the care and Alice Hayden committees, and quality relationships that are created with and rights of students with disabilities to receive serving as a member of the JASH editorial out of respect for people with disabilities. the supports and services they need to be board. If elected, Kathy looks forward to successful in general education classes in working closely with other TASH members to Chris Kliewer's their neighborhood school. further develop and strengthen the goals of participation in the Peace Marcie spent several years providing training the organization; to ensure the ongoing Movement beginning in the and technical assistance to school teams in advocacy, research, and policy initiatives mid-1980s brought him to dozens of schools prior to joining the staff of which promote respectful supports and direct action mobilizations TASH. She was a strong leader in TASH's proactive self-determination for individuals across the United States, and efforts to protect the Individuals with with significant disabilities; and to collaborate ultimately raised his interest Disabilities Education Act during the recent with other like-minded organizations for in issues of social justice for reauthorization process. whole school reform, policies which promote people with disabilities. In the well-being of children and families, and 1988, he moved to Syracuse, Marcie is an active member of ADAPT, and is widespread celebration of diversity. N.Y., and began teaching at the Jowonio a founding member of Capital Area ADAPT, School. "Jowonio" is an English translitera- the Washington, D.C. area chapter. She also Donna Gilles tion of the Onandagan phrase meaning, "To serves on the Board of Directors of the has been actively set free." The school was founded as a part of National Spinal Cord Association, the World involved with teaching the free school movement, and was one of the Association of People with Disabilities and individuals with first educational sites to promote the full the Spinal Cord Injury Network of the disabilities, supporting inclusion of all children. It was then that he Metropolitan Washington Area. She is the their families, and became involved in TASH. training teachers and vice-chair of the Maryland Statewide Independent Living Council. Marcie's work service providers for In 1995, he completed a Ph.D. in Teaching takes her from the streets to cyberspace. over 25 years. She has and Leadership at Syracause University under been a TASH member the guidance of Doug Biklen. He is now a In addition to her personal experience with since 1978, has been a Governing Board faculty member at the University of Northern acquiring a disability, Marcie is also the parent member for 2 1/2 years and is currently Iowa, Cedar Falls, where he advocates for the of two children with disabilities. "My serving as the Vice President and President- full educational and community inclusion of experiences in fighting for Jessica and Elect. As a past (and current interim) all people. His research on the development Dustin's rights to an education and adequate, president of Florida TASH, Donna is commit- of literacy skills in people with significant affordable health care have been the most ted to strengthening the connection between disabilities is helping to change school significant lessons of my career. Despite all of TASH and its chapters. expectations and teaching methods. Cur- my connections, all of my knowledge, my rently, Chris is fighting for the release of an fight for educational services and health care Donna is the Associate Director for the Iowan institutionalized against her will that meet my children's needs has been awful. Center for Autism and Related Disabilities because she happens to have a disability. and the Director of the Florida Outreach If this mom can't move systems to meet her children's needs, the system is going to be Project for Children and Young Adults who Marcie Roth are Deaf-Blind at the University of Florida in even less responsive to families with less has been actively Gainesville. Both projects provide technical experience and connections. This MUST involved in TASH since assistance and training for families, school change if we are to realize the dream of full the early 1980s. A personnel, and other service providers who community inclusion and meaningful lifetime member, she was live with or work for people who experience a participation for our children." TASH's Director of variety of significant disabilities. She has Governmental Affairs and conducted preservice and inservice training "It is with passion and a commitment to real Public Policy from 1995 for teachers and other service providers for 20 change that I seek election to the TASH Board until last summer, when years at the Johns Hopkins University, the of Directors. I will bring a unique combina- she joined the staff of the University of Maryland, and the University of tion of skills and experiences to this role and National Council on Independent Living as Florida. will welcome the opportunity to continue to the Director of Advocacy and Public Policy. work toward a bright future for TASH and the Marcie is an active, daily presence in Wash- Donna feels that it is critical that people with people we are committed to." ington, advancing the voices of people significant disabilities, who are traditionally outside the beltway as decisions about dismissed as incapable of having a voice, are disability public policy are made. given control over decisions which affect the current and future quality of their lives. Marcie has been actively involved as a leader Because of this, she is committed to the in the disability rights movement since the development of respectful teaching and Continued on page 7 1 4 4 PAGE 6 TASH Newsletter, August 2000 2000 LE RD ELECTION
2000 TASH Board Election neighborhoods, communities and associa- true self determination that enables everyone Continued from page 6 tions. to live full lives within their own neighbor- hoods." I think I bring a background of varied Susie Schaefer experience (and some scars to show for it) Dick Sobsey "It is such an incredible and a very strong and active commitment to "I'm happy to be consid- personal honor to be TASH and our multicultural work together." ered for the TASH Board. nominated for the TASH As Director of the JP Das board. As a long time Patti Scott Developmental Disabilities member of TASH, the "I'm very excited to Centre at the University of organization has and be nominated for the Alberta in Canada, I teach continues to be very board! TASH is an courses in Inclusive important to me. The organization Education and Communi- values of TASH and its that shares my deep cation Programming for mission are congruent with my own. My commitment to Learners with Severe Disabilities, but most of attendance at TASH conferences is historic.I making some major my professional life is committed to research have been a part of the TASH Multicultural changes in the USA and advocacy. When I'm not working, most of committee for many years and served as the and beyond, so that ALL people get to have my life is devoted to being father to a chair of that committee from 1995-97. 1 was the same choices, opportunities and daughter in high school and a son who has a on the TASH committee, originally known as status that most of us seem simply able to significant developmental disability and who the International Committee, that later take for granted. attends regular class in our neighborhood became the Multicultural Committee. Work elementary school. Although I've worked with this committee has included planning What can I tell you about myself? Well, I with people with significant disabilities since for Multicultural strands at the annual TASH joined TASH in the mid '80s and later served 1968, my last ten years as a parent have conference, as well as annual committee as Vice President of the New Jersey Chapter. taught me some things that I don't think I meetings. In 1998, I served as co-chair of the I'm also a long-time member of the Commu- would have ever learned through professional local planning group for the TASH conference nity Living Committee, which I have been co- training or experience. in Seattle. Much of my effort on this group chairing with Judith Snow for the past two focused on the formation of a local years. I believe that research must have social Multicultural committee. My goal was to relevance. My research on violence and involve individuals and families of color/ I have been working as a direct service disability over the last decade has helped to limited English speaking in TASH and in the provider for almost 18 years now In 1995, call attention to how violence and abuse hurt conference. Of course, the best part of my together with Kenn Jupp, I founded so many people with disabilities. While there involvement in the Multicultural and Neighbours, Inc., and took on the role of CEO is much more work to be done, my work has International work of TASH has been getting for this non-profit agency that exists solely to had direct influence on the development of to know TASH members from an array of enable people to design and live the life of prevention and treatment programs as well as ethnic and cultural backgrounds from around their choice, irrespective of the degree of their on law reform. the United States and other parts of the disability. Now, five years later, over 100 world. people each have their own individual I believe that the greatest challenges facing funding, rent or buy their own home, hire people with disabilities are human rights Professionally, I am a long time (old) and fire their own staff, and follow their issues. The lack of equal protection of the law administrator with the state agency in hopes and dreams to live their life in the way in the form of medical discrimination and Washington. One of the professional that they want. This year, we have begun to failure to aggressively prosecute crimes accomplishments of which I am most proud grow a network of tiny agencies that share the against people with disabilities are among the is my work with Washington families to same vision and values, so that we can offer greatest dangers. That is why I've worked redesign the state Family Support Program. people the same personalized support system with government agencies on law and Our primary emphasis has been to recognize no matter where they live. program reform in the U.S. and Canada, but and build upon the strengths of families and also worked for people with disabilities in communities. During my 25 year career, I Right now, we have already extended from civil actions against those governments and have also been involved in promoting New Jersey into two counties in Pennsylvania against service agencies that have failed to systemic change that supports people to move and have opened a sister company in the meet their responsibilities. I can help TASH from developmental centers to supported United Kingdom, where we are working hard continue its strong tradition of human rights employment and institutions to community to make this a reality on the other side of the advocacy. living. Most recently, my energy has gone Atlantic. Additionally, we have provided towards convincing our state agency that consultation and support to people in a I believe that parenting is the most important governmental power is illusionary, and that variety of countries (such as India and Malta) role most of us will ever play in our lives. individuals and families really should and who share our commitment to an inclusive Services that require parents to act as really do have power and control over their society. paraprofessionals without considering how own lives.I am now looking forward to this affects their primary roles as parents can leaving state government and finding Its great for me to have this chance to make a harm families. TASH can play an important different ways to provide greater opportuni- real contribution on the board of TASH and ties for inclusion of a very diverse group of to help maintain the PATH that leads to a people and their families in their local world of inclusion, harmony in diversity and Continued on page 8
PAGE 6 PtIews0e4ff ev, £Tigusg 2©@© 2000 BOARD ELECTION
2000 TASH Board Election sity through education, research, and community activities that result in improved Continued from page 7 TASH IS quality of life for individuals with disabilities and their families. The Center, like TASH, SEEKING A brings together individuals with disabilities, role in gaining recognition for the unique family members, and a broad range of roles of parents and other family members. professionals and other committed to Coordinator of what can best be described as "TASH Values." I believe that the lives of people with Governmental Affairs disabilities and their families are typically I also have a strong interest in the area of better than the bleak professional stereotypes public policy. Last year I was named a The person in this position will: often presented. As a researcher, I have found Kennedy Public Policy Fellow and had the coordinate TASH's legislative and that most families of children with significant privilege of serving for a year in Washington, public policy advocacy efforts; disabilities are healthy and strong. As a D.C. as a congressional fellow with Senator parent, I know having a child with a disability Jim Jeffords, Chairman of the Health, represent TASH members and has been an asset to our family. TASH has Education, Labor, and Pensions Committee. TASH's interests in Washington, DC done a great job of celebrating families, and I This experience made me realize how would like it to do even more to dispel the important it is for organizations such as myth that all families of children with TASH to be at the table when legislation maintain and strengthen TASH's disabilities are "pathetic poster families." and policy decisions are being made that presence on Capitol Hill; affect the lives of individuals with significant I believe that TASH should maintain its disabilities. I will bring this perspective, monitor national issues that primary focus on people with significant knowledge, and commitment that to the impact on the lives of people with disabilities. Recent discussions about a TASH Executive Board if elected. disabilities and their families and possible broader focus for TASH foreshadow identify issues of importance to TASH some of its coming challenges. If I am elected In many ways TASH and I have grown up and its members; to the TASH Board, I will support maintaining together. Like so many others, TASH has TASH's primary commitment to people with always provided me a place to replenish when significant disabilities. TASH can and should the struggle to create change becomes draft statements on TASH's join with other groups who share common overwhelming. TASH has always been there positions; goals for social change, but only when doing for me; the people, the values, and the so clearly serves this primary focus. Losing commitment to do the right thing, even when build alliances with federal that focus could result in short-term gains by it was difficult.I feel it is most appropriate agencies and other disability and increasing membership, but the long-term for me to give back to an organization that human rights groups; result would be the sacrifice of many has given me so much. In this way, I hope to wonderful things that make TASH different contribute to ensuring that TASH will assure that TASH members have from lots of other organizations." continue to do the same for others in the future." the information and tools needed to affect public policy; Lu Zeph "It is an honor to accept mobilize members to affect policy the nomination for the TASH Executive Board. on a grassroots level; and My name is Lu Zeph, and I have been an active disseminate information about TASH member for over TASH, its activities, agendas and 20 years. During that positions. time I have served on a wide range of TASH FOR A COPY OF THE JOB DESCRIP- committees and work groups, and presently TION, INCLUDING POSITION serve as a member of the Editorial Board of REQUIREMENTS, PLEASE SEE TASH's JASH. web site at www.tash.org or call 1 -800- 482 -8274. To apply, send a letter of My professional career spans over 25 years in interest, curriculum vita/resume, and the area of significant disabilities.I have been salary requirements to: GA Search a teacher, an administrator and, for the past Committee, do Nancy Weiss, Executive 20 years, I have been a professor at the And don't forget. Director, TASH, 29 W Susquehanna University of Maine teaching in the area of for the first time, we are offering four Avenue, Suite 210, Baltimore, MD 21204. significant disabilities and disability studies. different ways you can cast your ballot! Applications will be accepted until In 1992, I became director of the Center for October 1, 2000. TASH is an Equal Community Inclusion, Maine's University Cast your ballot by mail, fax, e-mail or Opportunity Employer and encourages Affiliated Program at the University of Maine. vote on TASH's web site. See details on individuals with disabilities and family The Center's mission is to bring together the page 3 of this Newsletter. members to apply for this position. resources of the community and the univer- 146 PAGE 8 TASH Newsletter, August 2000 2000 BOARD ELECTION
TASH 2000 Election of Five (5) EXECUTIVE BOARD MEMBERS Term of Office: 2000-2003
- OFFICIAL BALLOT -
There are five positions for members of the TASH Executive Board to be filled thisyear. Positions will be filled via ballot by dues-paying TASH members (one each) in accordance with the Association's By-Laws. The Executive Board members-elect will begin their terms at the Annual Board Meeting held in conjunction with the 2000 TASH Confer- ence to be held in December in Miami Beach, Florida. 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.
0 Paul Bates Donna Gilles Patti Scott
Rainee Courtnage 0 Chris Kliewer 0 Dick Sobsey
June Downing Marcie Roth Lu Zeph
Kathy Gee 0 Susie Schaefer For information about the candidates, please refer to pages 4-8 of this issue of the TASH Newsletter:
Mailing Instructions: Ballots may be returned using this postage-free mailer, or originals of the ballotcan be sent in an envelope. If you elect to use an envelope, please be sure the word BALLOT is printedon the front.If you use an envelope, please do not place anything other than your ballot inside.
You may also return this ballot by fax (410-828-6706) or on TASH's web site:
Ballots must be received at the TASH Central Office by October 10, 2000
Mail your completed ballot to: Ballot Control Number TASH, 29 W. Susquehanna Avenue, Suite 210 Baltimore, Maryland 21204 Attn: Ballot N2 8905 117 PAGE 9 TAM Newsletter, August 2000 000V CIIIVOS NO112311
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21204-9434 MD BALTIMORE, 210 STE. AVE., SUSQUEHANNA W. 29 TASH
ADDRESSEE BY PAID BE WILL POSTAGE MD BALTIMORE 1896 NO. PERMIT MAIL FIRST-CLASS MAIL REPLY BUSINESS
STATES UNITED THE IN MAILED IF Cri;T NECESSARY POSTAGE NO CRIMINAL OFFENDERS WITH DEVELOPMENTAL DISABILITIES
findings disabilities. Although we do not wish to also excuse the criminal behavior of offenders indicate who have cognitive disabilities, we must that recognize that people with this label
r California cannot be processed like others who has few come into contact with the criminal programs justice system. or policies to accom- Once in jail or prison, people with modate developmental disabilities are often t''fr r; the special victimized by other inmates. Because of i needs of their cognitive disabilities, they are more people likely to have a difficult time understand- with ing jail and prison rules and may spend develop- time in segregated conditions which :.4.4 mental limits their work opportunities, and disabili- hence "good-time" credits and early ties, who release. often lack access to the legal protections that exist for others (Petersilia 2000). Because there are few specialized reha- Doing Justice: Criminal bilitation or parole programs for reinte- Offenders with Studies show that many if not most grating people with developmental people with MR/DD who become in- disabilities once they are released, their Developmental volved with justice authorities have mild entrance into the revolving-door cycle of disabilities that are not easily recognized prison to parole and back to prison is Disabilities by people who are not specifically trained predictable. At an average annual cost of to recognize them. As a result, most $22,000 per year per U.S. inmate, such a BY JOAN PETERSILIA, Ph.D. people with developmental disabilities scenario should offend our cost con- proceed from arrest through adjudication sciousness as well as our sense of equal without any special accommodations to justice. help them negotiate the complex justice people with cognitive, intellectual, system. Although state law requires Legal scholars and advocates for people or developmental disabilities are a people with hearing impairments to have with disabilities are becoming increas- small but increasing portion of language signers and non-English- ingly vocal in their concern about offenders in the criminal justice system. speakers to have interpreters in their mistreatment from justice agencies. Generally this population is referred to as dealings with the justice system, similar While trend data does not exist, there is a having mental retardation or being assistance to people with developmental sense that the prevalence of the problem developmentally disabled (MR/DD), disabilities is not required. though the second term is now preferred. Since people with developmental People with developmental disabilities disabilities who are arrested may not are estimated to comprise 2% to 3% of understand their rights (such as Miranda the general population, but represent 4% warnings), they frequently waive them to 10% of the prison population, and and end up in jail pretrial. When ques- an even higher percentage of those in "...Of all societal institutions, the tioned by the police, they often give juvenile facilities and in jails. Officials criminal justice system is the last answers they believe the police want to believe the problem is likely to worsen to adequately respond to the hear, rather than answers that are correct. over the next several years, as the During court proceedings, they are less needs of people with develop- prevalence of MR/DD in the general U.S. able to assist the defense in case mental disabilities. For people population increases. preparation, and frequently make self- with developmental disabilities, incriminating statements. While some the criminal justice system is the A just-completed study by the author research suggests their crimes are likely last frontier of integration." conservatively estimates that 15,518 to be less serious, on average, than those Californians with developmental disabili- of people without disabilities, their rates ties are currently in jail, in prison, on of conviction and incarceration are probation, or on parole. The study's higher than those of people without Continued on page 12 19 PAGE 11 TASH Newsletter, August 2000 CRIMINAL OFFENDERS WITH DEVELOPMENTAL DISABILITIES
Doing Justice: Criminal Of fenders offenders with mild retardation can be court-imposed sentence than non-MR/DD with Developmental Disabilities clever at masking their disability. A offenders (Lampert 1987). survey of 100 police officers found that Continued from page 11 91% of the respondents had no training In most prison systems, only in working with individuals with devel- inmates who score above the 6th grade opmental disabilities. A similar lack of school level are enrolled in vocational is growing, and that the justice system has training was also found for judges and training programs. If inmates with MR/ been particularly slow to accommodate lawyers (Schilit 1989). DD cannot meet this criteria, they are the needs of people with disabilities. As denied all but the most menial jobs, and- Ruth Luckasson, a member of the Once arrested, MR/DD offenders are rarely able to obtain any sort of paid President's Committee on Mental Retarda-are usually jailed during pretrial proceed- employment in the prison system. As a tion, recently wrote: ings, as they are unlikely to meet the consequence, incarceration for inmates criteria for personal recognizance or bail, with MR/DD has a more devastating "We can quibble about whether education or since they are most likely unemployed impact than for offenders without medicine has responded more quickly to the and have limited or non-existent support disabilities (Cowardin 1997). societal need to end discrimination of the systems, two of the major criteria used in mentally retarded... but I don't think there is bail decision-making. Research has c> When released, MR/DD parolees much question that of all societal institutions, shown that persons held pretrial, all are rarely placed in specialized supervi- the criminal justice system is the last to other factors being equal, are more likely sion caseloads or given added assistance, adequately respond to the special circum- to be convicted (Toberg 1992). and they often are explicitly excluded stances of people with developmental disabili- from rehabilitation programs because of ties. For people with developmental disabili- .4> Studies show that MR/DD their disabilities. Their resulting recidi- ties, the criminal justice system is the last defendants are more easily convicted and vism rates are high (Petersilia 1997). frontier of integration" (Luckasson 1999:2, receive longer terms than offenders italics added). without disabilities (Laski 1992). They Another significant problem is the confess more readily, provide more number of people with mental retarda- What Explains the High Prevalence of incriminating evidence to authorities, tion who are executed, although 12 states Criminal Defendants and Inmates and are less successful in plea-bargaining and the U.S. Federal government now with Developmental Disabilities? (Edwards and Reynolds 1997; have laws prohibiting the execution of Gudjonsson 1990). Leo and Ofshe people with mental retardation. At A number of cumulative factors appear to(1998) reviewed 60 cases of well- least 30 people with mental retardation explain the high prevalence of people documented false confessions and have been executed since 1971, and with developmental disabilities in the identified about one-quarter of those as experts estimate that as many as 10% to justice system: suspects with mental disabilities. 15% of the 3,000 men and women on the nation's death row have a develop-
.4> Offenders with MR/DD come .4> Once incarcerated, the MR/DD mental disability (Miller and Radelet disproportionately from low-income offender is often abused or victimized. 1993). minority groups, where police presence Their response to threatening situations and the probability of arrest are high. is more likely to be physical rather than Fully a third (34%) of adults with verbal or intellectual, and their resulting disabilities live in households with total institutional behavior is poor. As such, Justice-related education income of $15,000 or less, compared to inmates with MR/DD take up an for people with developmen- only 12% of those without disabilities. inordinate amount of staff time, and tal disabilities and their many are eventually reclassified to a families and/or care Official justice system process- higher and more expensive security level. providers must be increased. ing (from arrest through sentencing) People with MR /DD must have usually proceeds without officials Their poor institutional behav- access to education that becoming aware of the offender's ior and "over-classification" means that enhances their ability to intellectual disability. McAfee and Gural they fail to earn maximum good time/ protect themselves from (1988) found that 75% of offenders work time credits, are unable to partici- criminal victimization and with mental retardation were not identi- pate in early release programs, and in avoid possible criminal fied at arrest, and more than 10% were states with parole, fail to become "parole activities. not identified until they were in prison. eligible" because they have not finished the programs required for parole consid- .4> Justice personnel are unfamiliar eration. The result is that offenders with with how to recognize the disability, and MR/DD serve a greater portion of their Continued on page 13 150 PAGE 12 TASH Newsletter, August 2000 CIZOEMIRMI IMENIDEMS U7041.0 DEVEIOPINIERTM1 DOS
Doing Mice: Di Iling! Menders professional organizations have devel- failure. The result is an increased number wilili Develoginienilai oped materials to assist in this education. of parolees returning to prison, putting For example, the National Judicial Continued from page 12 pressure on states to build more pris- College has developed a training curricu- onswhich, in turn, limits money lum for judges, entitled "Defendants, available for rehabilitation programs that Victim's and Witnesses with Mental might have helped offenders when they What Must Be Done? Retardation: An Instruction Guide for were in the community. Judges and Judicial Educators." Similarly, Real change in the way people with the Arc of the US has updated a training This situation presents a formidable developmental disabilities are treated in package originally developed by the challenge to those concerned with the criminal justice system will require International Association of Chiefs of prisoners with disabilities. Ultimately, of state and national leadership. The Police about how to interact with people course, reform will come only when highest priority must be given to requir- with mental retardation. there is willingness to accord a basic ing that people with developmental dignity to all citizens regardless of disabilities who are arrested are given We must also develop appropriate intellectual level, and take seriously assistance prior to being questioned by sentencing options, including everyone's constitutional right to police. Such advocates must understand community-based rehabilitation pro- "equal justice for all." both mental retardation and the criminal grams, for offenders with developmental justice system. This change will also disabilities. When released, the majority require continued training for police of parolees with developmental disabili- officers. Many states currently provide ties are virtually never placed in special- Joan Petersilia is Professor of training on disability issues to new police ized caseloads or given added assistance, Criminology, Law & Society at the recruits, but most of it relates to mental and they are often explicitly excluded University of California, Irvine. illness and not mental retardation. from treatment and work programs Professor Petersilia may be reached because of their disabilities. There by e-mail at jrpetersuci.edu Leadership support on this issue has appears to be agreement that the current been slow nationally. As one lawyer put system is not working and that some- it, "This is not a shouting population." thing better must be developed. Judges Because of their perceived powerlessness, reported being unable to divert these coupled with stereotyping and prejudice, offenders to the community because few AirHAVE YOU CONSIDERED people with developmental disabilities appropriate programs exist. Correctional BECOMING A LIFETIME MEMBER have never attracted the kinds of funding administrators should give specialized OF TASH? NOW IS THE TIME! or policy attention that their numbers in probation and parole caseloads highest the justice system should warrant. priority, to reduce the recidivism rates of Excellent program models and proposed offenders with developmental disabilities. The price of a TASH Lifetime Member- legislation exist, yet most of it sits ship has not increased since the incep- tion of this membership option almost on shelves. Policymakers and social services agency 20 years ago. Lifetime memberships are staff often express a desire to address currently priced at $1,000. This cost can Three other priorities must be addressed. these problems, but note the practical be spread over multiple payments if you There must be an increase in justice- realities of a lack of resources. The choose. Once you are a lifetime member, related education for people with national tough-on-crime mood inhibits you never need to pay TASH membership developmental disabilities and their them from improving services for a select dues again. Lifetime members are families and/or care providers. People few, however deserving. Nonetheless, recognized in the TASHNewsletterand in with MR/DD must have access to educa- available research evidence indicates that each year's conference program. tion that enhances their ability to protect well-designed and properly implemented themselves from criminal victimization programs can result in significant The TASH Executive Board has approved a price increase for Lifetime Member- and avoid possible criminal activities. If reductions in recidivism. Massachusetts, ships from the current rate of $1,000 to they do become involved with the New York, Texas, and Ohio all operate $1,300, effective January 1, 2001. We criminal justice system, they and their successful programs for parolees with hope you will take advantage of the families need to better understand MR/DD. opportunity to become a Lifetime their legal rights (including those that Member of TASH at the current $1,000 can be requested under the ADA). Most states do not have such programs, rate.To find out more or to arrange to and most offenders with developmental pay for your membership over several Justice system personnel also need disabilities are released to communities payments, call Rose Holsey at 1 -800- that provide few services and impose 482 -8274, ext. 100 or send an e-mail to training, as most are unfamiliar with the [email protected]. needs of persons with disabilities. Several conditions that almost guarantee their Ntorall P OGE 151 a KleuesieOtew, August 2000 VICTIMS AND OFFENDERS WITH MENTAL RETARDATION
"I don't know how to recognize mental Victims of Crime (OVC) to create retardation. But if there are certain guide- materials for victim advocates and lines, certain hints about how to recognize disability advocates in an effort to people with this disability, then maybe we improve services to victims with mental should know about them...maybe if we were a Serious Issues retardation and other related develop- bit more aware of things to look out for"' mental disabilities. Throughout the past Facing Today's year of this project, issues raised by This straight-forward and insightful disability and victim advocates include: quote from a police officer Victim and emphasizes the point that most How can victim assistance and people in the criminal justice system Offender with disability organizations work closely whether victim advocates, attorneys, Mental together in an effort to reach out to police officers, judges, correctional victims with mental retardation? officers, forensic specialists or other iRetardation professionals in the criminal justice BY LEIGH ANN DAVIS, What services or treatment options, system do not know what mental M.S.S.W., M.P.A. if any, are available for victims with retardation is or how to recognize it. mental retardation in my community? They often do not have knowledge or (i.e., counseling services, rape crisis familiarity with the disability, and lack services, support groups, behavior the confidence to effectively work and bulletin stated that people with develop- support services and self-protection communicate with individuals with mental disabilities (which may include training) disabilities. Even though efforts to train mental retardation) have a 4 to 10 times criminal justice professionals have been greater risk of becoming a crime victim How can the various state or county ongoing in some states and have just than those without a disability (OVC agencies responsible for helping victims begun in others, the "invisibility" of Bulletin, 1998). work together (or should they)? (organi- mental retardation still remains one of zations include the local victim assistance the most critical issues facing people People with mental retardation are more program, the district attorney's office, the with mental retardation in the year 2000 vulnerable to all types of victimization, protection and advocacy center, and the and beyond. Without accurate identifica-including neglect, financial abuse, adult or child protection agency) tion of mental retardation among victims physical abuse, sexual abuse and rape. and defendants, they can not obtain the With regard to sexual victimization, What types of abuse or victimization support needed to fully participate as many people with any type of disability are considered criminal in nature when equal citizens in the criminal justice and (including physical and mental) will be the victim has mental retardation? (states' legal system. sexually assaulted or abused (Sobsey & laws vary with regard to what is consid- Varnhagen, 1989). Some research ered a crime) Victim Issues suggests that people with an intellectual disability are at the highest risk of abuse Sorting through these issues takes time The seriousness or level of attention compared to those with other types of and determination by disability and given to a social problem is often deter- disabilities (Sobsey & Doe, 1991). Rape victim advocates. There are some initial mined by the number of people impactedis also a common experience in these positive signs because advocates from by the problem. In the case of victimiza- individuals' lives. Approximately 15,000 both fields seem genuinely concerned tion against people with disabilities, this to 19,000 people with developmental about this population. However, a problem qualifies as extremely serious disabilities are raped each year in the commitment by disability and victim because individuals with disabilities are United States (Sobsey, 1994). advocates at all levels of the system must more likely to become a victim of crime be made to reach out to victims with compared to those without disabilities. Victims with mental retardation are often disabilities in an effective manner. The National Organization for Victim alone, without the aid of any practical Assistance addressed this issue in a 1998 coping tools or assistance, after a victim- Offender Issues' bulletin that discussed how victim ization occurs. Individuals with mental advocates and others in the criminal retardation may not realize they are being Many may not perceive the issue of justice system can work with crime victimized and, therefore, will not tell people with mental retardation becoming victims who have disabilities. The anyone about the crime or it may be too unsafe to report the crime. The Arc and The term offender is used to describe NOVA (National Organization for Victim someone who either has committed a crime Taken from Cleartalk: Police responding to Assistance) are working together on a or who has been accused of committing a intellectual disability by Mark Brennan & project funded through the Office for crime. Roslin Brennan, 1994). Continued on page 15 PAGE 14 04,TASH Newsletter, August 2000 WletrIMIS RAID OEFFEIXIDMIS WON MINIMIL MET
Serionns 'Issues IFelciang There are specific concerns regarding place; and 2) assist the person once he or ToaIlaly9Weinman =nag different types of crimes committed by she becomes involved in the criminal individuals with mental retardation. For ©Menai !ea. wfitfin Menntalil justice system. People with disabilities example, in some states, programs that need ongoing education to help them etordeatiroo nn serve offenders with mental retardation learn what and who is safe, how to talk to Continued from page 14 have a higher number of sex offenders in police officers and how to protect their their program compared to those with rights as citizens. Professionals in the other types of offenses. Does this mean criminal justice system must receive involved in the criminal justice as serious that people with mental retardation are training on how to identify someone with until one's own son, daughter, or othermore likely to commit sexual offenses a disability and know the most appropri- family member is faced with this possibly than those without disabilities? Not ate placement/treatment available to the life-threatening situation.' Although necessarily. One researcher found that individual. Research is needed to there is no link between mental retarda- approximately 10-15% of all sexual validate and specifically pinpoint what tion and criminal behavior (i.e., people offenses are committed by people with types of services or programs for offend- with mental retardation are not more mental retardation. This is only slightly ers with mental retardation would be likely to commit crimes), there is a higher that those committed by the most effective. For example, what greater chance that someone with mental general population (around 9%) counseling techniques work best for retardation would be caught if he or she (Murphy, Coleman & Haynes, 1983). physically abused individuals with mental were involved in criminal activity. It is Most of these "offenses" occur out of retardation or what components are not uncommon for people with mental ignorance, lack of education or poorly needed to have a successful program for retardation to be used by non-disabled developed self-control. One example is sex offenders with mental retardation? criminals to commit crimes because they that of a man charged with indecent With accurate and reliable data, disability are easier to persuade, manipulate and exposure when urinating in the street. and criminal justice advocates can scare into doing things compared to His real crime was not knowing how to request funding for programs to address those without mental retardation. Peoplefind the public restroom and being unmet needs among this population. with mental retardation have a deep, unaware that such behavior is socially strong need to feel accepted and may unacceptable (Cooper, 1995). Conducting research builds and broadens our knowledge base on victim and OE 111000616100000000 o 0 Sex offenses among people with mental offender issues. On the national level, rt retardation are often over-represented in creating a national or international center Regan less of one's 0 o professional title 0 many studies. For example, researchers to study, research and consistently o which Held of en- 0 found that people with mental retarda- monitor issues involving people with ° tion were more likely to be involved in deavor one ursues, 0 mental retardation in the criminal justice each of us must work sexual misconduct (12.5% of those with system is one possible step for long-term 61 mental retardation compared to 1% toward improving our 0 progress in achieving a more balanced o understanding and without a disability) (Koller, Richardson system of justice. On the community awareness of issues & Haynes, 1982). Although research is level, building coalitions of professionals 61 facing today's victim inconclusive on whether people with from all sectors of the criminal justice and offender with mental retardation commit more sexual and disability fields that focus solely on mental retardation. offenses or whether they are more likely disability and criminal justice issues can *I 000000112101000000* to be caught when they do, experts in the help build awareness of the problem. field generally believe the latter. What is known, however, is that people with Regardless of one's professional title or agree to help with criminal activities to mental retardation are at increased risk which field of work in which one is gain friendship. Once in the criminal for sexual abuse and victimization (and involved, each must work toward justice system, they are more likely than other types of abuse) which may have a improving his or her understanding and others to be convicted, sentenced to direct impact on their involvement in the awareness of issues facing today's victim prison and victimized (Santamour, criminal justice system as a sex offender. and offender with mental retardation. As 1986). They may learn illegal sexual behaviors the quote from the police officer stated at and continue doing them with no the beginning of this article, "maybe if we Author and advocate Robert Perske writes knowledge that the behavior is a crime. were a bit more aware of things to look books about people with mental retardation out for," we could identify people with who are accused of serious crimes and Today's offender with mental retardation mental retardation, reduce injustice in unknowingly waive their Miranda rights, is often without appropriate services or end up on death row and are sometimes programs to 1) help the person stay out executed - even though there is no evidence of the criminal justice system in the first that the defendant is guilty. Continued on page 16 P Off 1 5 1 5 3TSH ewsletter, August 2000 VICTIMS AND OFFENDERS WITH MENTAL RETARAMON
Serious Issues Facing Today's Victim and PROFESSIONAL DEVELOPMENT Offender with Mental FACILITATOR Retardation Maryland Coalition for Inclusive Education (MCIE) Continued from page 15
Join the dynamic team providing training and supports to schools as they develop inclusive services for students with disabilities in Maryland. You will collaborate with their lives and increase the quality of life fellow colleagues, develop collaborative relationships with school-based personnel, and for both victims and offenders with facilitate best practices in education for ALL students. The position involves inservice disabilities. training, working with school-based teams, and developing strategies for systemic reform at the school-based level.
References REQUIREMENTS: This position requires a Master's degree in special education, Cooper, A. (1995). Review of the role of two anti-libidinal drugs in the treatment of sex general education, or a related field; a minimum of three years experience teaching offenders with mental retardation.Mental students in public schools; experience in including students with disabilities in regular Retardation,33, 42-48. education classes; experience in conducting formal inservice training sessions and curriculum accommodations; and experience providing training to general and/or Koller, H, Richardson, S., Katz, M. & Haynes, special education teachers. Waiver of any of these requirements will be considered on M. (1982). Behaviour disturbance in the basis of strength in skill areas. childhood and early learning adult years in populations who were and were not mentally It is critical that Professional Development Facilitators be knowledgeable of best general handicapped.Journal of Preventative Psychiatry, and special education practices and be able to demonstrate these practices to others. 1, 453-468. This requires oral and written communication skills, developing and conducting adult Murphy, W, Coleman, E. & Haynes, M education sessions and courses, planning and organizational skills, and the ability to (1983). Treatment and evaluation issues with empower others to use inclusion tools. Knowledge of specific strategies for planning the mentally retarded sex offender. In J.G. inclusive practices and group facilitation are required; these can be acquired through Green & I.R. Stuart (Eds.),The sexual aggressive job training. (pp.22-41). New York: VanNostrand Reinhold. MCIE is an equal opportunity employer. We encourage minority applicants to consider us. Send your resume and letter of application to: OVC Bulletin: Working with victims of crime (September 1998). Office for Victims of Crime, U.S. Department of Justice, Washing- Carol Quirk, Director ton, D.C. Professiond Development Services
Santamour, M. (1986). The offender with MCIE mental retardation.The Prison Journal,66 (7), 7484 Candlewood Drive, Suite R 3-18. Hanover, Maryland 21076 Fax: (410) 859-1509 Sobsey, D. (1994).Violence and abuse in the lives of people with disabilities: The end of silent acceptance?Baltimore: Brookes Publishing Co. Sobsey, D. & Doe, T. (1991). Patterns of South Coast ESD sexual abuse and assault.Sexuality and Disability, 9 (3),243-259. Coos Bay, Oregon
Sobsey, D. & Varnhagen, C. (1989). Sexual abuse and exploitation of people with Seeks teachers of children with significant disabilities. Public schools on disabilities: Toward prevention and treatment. beautiful Oregon Coast have immediate openings for innovative, In M. Csapo and L. Gougen (Eds.)Special collaborative teachers with licensure and education experience with students Education Across Canada(pp.199-218). with significant disabilities. Vancouver: Vancouver Centre for Human Development and Research. Prefer skills in augmentative/alternative communication, behavioral analysis including communication functions, positive behavior intervention, sup- Leigh Ann Davis is a Project Specialist ports for inclusion, functional assessment/instruction, curricular modifica- with The Arc of the United States. Ms. tion, and transdisciplinary service delivery. Davis may be contacted at e-mail at
' PAGE 1615,1 TASK Newsletter, August 2000 &OSUMI' 2 0
9TH ANNUAL INSTITUTE FOR INCLUSIVE EDUCATION .., Tl. t... f L....;%, orx *r-? 14,Y)4%4 , A a§-acp=oma n ALL ERN ERS i , J l, C..r...t...7Sa..1 Di.t...t, COKEER7NCE . 0 4
SUNDA,Y, OCTOBE22 - TUESDAY, OCTOBER 24, 2000 ST. LO 0S, MO OURMISSION Our purpose is to
enhance the capacity
E k SPEAKERS`of rir aD Dorothy Kerzner Lipsky school, home and community Don Bartlette Jeff Moyer to understand and John-Paul Bovee Phil Timp develop the Alan Gartner Richard Villa diverse abilities
Robi Kronberg Gwen Webb-Johnson of all learners.
CONTACT DOROTHY WHITE Email: [email protected] Phone: (800) 835-8282 Web: http://info.csd.org
SANTA BARBARA County Education Office William J. Cirone, Superintendent
Teaching Opportunities in Santa BarbaraCounty Work on California's beautiful Central Coast witha dedicated team of special educators. We offer competitive salaries and an excellent benefit package. Seeking experienced professionalsanxious to improve the lives of children with significant disabilities/emotional disturbances. Positions availableat all grade levels, rural or suburban schools. Requirements: Must have strong grasp of positive behaviorsupport and core curriculum accommodation methods. Qualify for California special education teaching credential basedon current credential/experience. (May require additional coursework/tests to renew initial credential).
Salaryl Benefits: $31,373 to $49,129 basedon education and experience (1999/2000 schedule). Ten-month contract year. Comprehensive, cafeteria-style benefits package.
Contact: Gary Paine, Human Resources,
Santa Barbara County Education Office,
Equal Opportunity Employer
pGE 117 155 TASH Newsletter, August 2000 TRAUMA AND PEOPLEIMTCOGNITIVE DISABILITIES
applaud them and at a rate that makes trauma a major, ourselves. Of unrecognized risk to their well being. .411111 "v41.104,.. course, these very same people will Working Through Trauma also experience, Although as many as half of people in the remember and be general population in the United THE REACTION OF PEOPLE affected by States, and as many or more among overwhelming people with developmental disabilities, WITH COGNITIVE experiences that will experience an overwhelming event DISABILITIES TO TRAUMA disconnect them that brings on terror and helplessness, from the sense not all of these traumatized people will BY TERRI E. PEASE that the world is go on to suffer the intrusive memories, safe, predictable, avoidance of reminders and constricted 0 that people are life that are the hallmarks of post 0,) ordinarily well- traumatic stress disorder. Human beings meaning, and that attempt to make sense of trauma, to work their actions and through the experience by telling and wishes have an retelling the story, changing both their psychiatrist Judith Herman has said impact on the people and things around view of the event, and the meaning it has that traumatic events "overwhelm them. for them, in the process. When this the ordinary systems of care that process is successful, the person, al- give people a sense of control, connec- People are changed by trauma. When though he or she may be changed forever tion and meaning." Such events occur, the changes brought on by trauma by the event, is able to move on to a life and occur often, in the lives and histories disrupt their lives, intruding into their that is largely free of disruptive of people with developmental disabilities. memories, and restricting their ability to memories, emotions and reactions to However, despite increasing attention enjoy life and to connect with others, what happened to him or her. to the mental health needs of adults with they are experiencing post traumatic developmental disabilities, we continue stress disorder, PTSD. The kind of working through of trauma to behave as though having a develop- that avoids PTSD involves both mental disability somehow confers Statistics to clarify the risk of PTSD to emotional and cognitive processing. It immunity to trauma. For too long, we people with developmental disabilities requires that the person contain and have held to a myth that a person with are not directly available. However, regulate the strong emotions unleashed significant cognitive disabilities will not studies of the criminal justice system by the experience while using language remember, or be affected by experiences suggest that people with developmental and past experience to make some like sexual abuse, physical injury, disabilities will experience four times the meaning out of the event. At the same restraint, pain or overwhelming helpless- general rate of violent crime. Others ness. Of course that is not the case. have estimated that more than half, and as many as 80% of women with develop- Our continuing faith in the efficacy of mental disabilities experience sexual "Remembering and telling behavioral interventions for people assaultsa kind of trauma that sharply the truth about terrible with cognitive disabilities makes the lack increases the risk of PTSD. events are prerequisites of response to overwhelming events both for the restoration of in the lives of people with disabilities Of course, not all traumatic events come the social order and for the especially tragic. So much of what from abuse. Automobile accidents, is done with, to and for people with surgery, natural disasters and war are all healing of individual vic- developmental disabilities in the name frequently cited sources of the kind of tims." Despite limitations of treatment is predicated precisely on overwhelming helplessness that is of verbal and cognitive the idea that they will experience called trauma. Other events that are functioning, with proper what happens around them, retain what commonplace in the lives and histories supports people with devel- they experience, and in response, of people with developmental disabili- opmental disabilities can change their behavior. When people with ties, restraint, assault by out-of-control often heal from trauma. cognitive disabilities retain the peers, and painful medical procedures experiences that are planned by among them, also cause overwhelming caregivers, and change their behavior in fear and helplessness. Thus, it is certain the intended way, we call it learning, and that people with developmental disabili- ties are subjected to overwhelming events Continued on page 19 PAGE1815 6 TASK Newsletter, August 2000 TRAUMA AND PEOPLE WITH COGNITIVE DISABILITIES
The Reaction of People with cognitive disabilities because of the sheer What both of these strategies have in Cognitive Disabilities to Trauma impact on systems of care that would common is taking seriously the attempts Continued from page 18 come with understanding just how many by people with developmental disabilities people are troubled, afraid and impaired to tell, in words when they have them, in by their past experiences. And, in many behavior and in their bodies, that they cases, professionals with the expertise to have been profoundly afraid and that time the traumatic experience can cause care for developmentally disabled adults they need help to restore their sense of lasting neurobiological changes that with PTSD are in short supply. Instead, safety and connection to the world. affect the way that trauma survivors medication is used to control outbursts, Judith Herman reminds us that "remem- process and integrate memory, and masking the symptoms while doing little bering and telling the truth about terrible respond to fear. We know that children's to relieve the underlying impact of the events are prerequisites both for the less developed ability to contain lasting memory of a terrifying experi- restoration of the social order and for the and regulate their emotional responses ence. healing of individual victims." Despite causes them to react to, and retain limitations of verbal and cognitive trauma differently than do adults. In the growing professional literature on functioning, with proper supports people However, while it is well understood that PTSD little attention is paid to the with developmental disabilities can often having a developmental disability can specific treatment issues that arise when heal from trauma. affect the brain's ability to manage a tramatized person also has a cognitive emotional response and regulation, disability. One exception to the lack of References cognitive processing and encoding of focus on disability in the PTSD literature 1. Herman, Judith L. (1992) Trauma and memory, we simply do not know how is the six-part protocol for addressing Recovery, Basic Books. having a cognitive disability interacts PTSD among the developmental disabili- with the impact of trauma to affect a ties population, developed by psychiatrist2. http://www.ncptsd.org/facts/generall person's ability to handle and recover Ruth Ryan. fs_what_is_ptsd.html from one or more such events. We do know that a significant proportion of She recommends judicious use of 3. Knopp, Fay H. & Benson, Anna R. traumatized peoplesomewhere medications for treating concurrent (1996) A Primer on the Complexities of between 8% and 20% in the general adult psychiatric conditions, while also Traumatic Memory of Childhood Sexual populationgo on to experience lasting requiring medical intervention, avoiding Abuse, Safer Society Press, Brandon, VT. and disruptive changes in their iatrogenic complications (for example functioning as a result of trauma. A paradoxical reactions to medications or 4. Broman, Sarah H. & Grafman, Jordan similar rate, at least, could be the programming which re-evokes a trau- (1994) Atypical Cognitive Deficits in case for people with developmental matic event), psychotherapy, habilitative Developmental Disorder: Implications for disabilities. changes and education and support for Brain Function, Lawrence Earlbaum staff. With all of these elements in Associates, Hillsdale, NJ. Recognizing and Responding to Post place, people with developmental Traumatic Stress Disorder in people disabilities and PTSD can experience 5. Ryan, Ruth. Posttraumatic Stress with Developmental Disabilities significant relief. Disorder in Persons with Developmental Probably the overwhelming majority of Disabilities. Community Mental Health cases of post traumatic stress disorder In addition, there is growing self-help Journal, Vol. 30, No 1, February among people with developmental literature on PTSD, which includes 1994,pp45-54. disabilities are not recognized. Many of information for those who love and the symptoms of PTSDlong standing support people with PTSD. Many of the 6. Napier, Nancy J. (1993) Getting avoidance of, or extreme reactions to suggestions in these sources can also be Through the Day. W.W. Norton, New ordinary experiences or objects, unex- applied to those who support adults York. pected outbursts of rage or terror, with developmental disabilities. Beyond intermittent or lasting withdrawal or that, David Pitonyak has described 7. Davis, Laura. (1991) Allies in Healing. dissociation, repetitive accounting of pastways to offer supports for people with Harper Perennial, New York. events, sleep abnormalities and self- cognitive disabilities who also have soothing with drugs alcohol or self- PTSD. Among these recommendations, 8. Pitonyak, David, Ph.D. (1991) Sup- injurytend to be understood as he emphasizes helping to tell the person's porting a Person Who is Experiencing idiosyncratic features of a person's story "in a way that you would want your Post Traumatic Stress Disorder. Unpub- disability. However, these are all easily story to be told," helping the person to lished MS. recognized by those who work with achieve a sense of safety and well-being, trauma survivors as signs of a possible to expand and deepen his/her relation- post-traumatic response. It may be that ships, to have more fun and to have more PTSD goes undiagnosed in people with control over his or her symptoms. Continued on page 20 1 5 7 PAGE 19 TASH Newsletter, August 2000 TRAUMA AND PEOPLE WITH COGNITIVE DISABILITIES
The Reaction of People with Cognitive Disabilities to Trauma ARE YOU A UNIVERSITY Continued from page 19 PROFESSOR?
TASH has a Student Teaching Personal Safely Membership Program! Studies show that people with life long activity. Each human devel- developmental disabilities are at opmental step affords us the opportu- The program was developed through higher risk of criminal victimization nity to provide appropriate sexuality discussions with professors who and face innumerable barriers when and personal safety information. wanted to encourage professional reporting their victimization, having Without the necessary vocabulary, identity through student membership their case investigated and pros- understanding of appropriate social/ in a strong advocacy organization ecuted, and in receiving emotional professional relationships, and while assuring that their students had support. Barriers include lack of knowledge of their right to say "NO," access to enough issues of JASH for awareness about the extent of and receive support, people with them to be able to complete a variety victimization experienced by people developmental disabilities will not of journal article review and compari- with disabilities, communication only continued to be victimized, but son exercises they assign. difficulties for the person reporting will be re-victimized by the systems the victimization and/or the person developed to protect them. Parents The package works like this: receiving the report, and under- and professionals have to be encour- standing the trauma caused by aged to examine their own beliefs, Professors can either assign TASH victimization. biases, concerns and fears regarding membership as one would a text people with disabilities self-determina- book or package of readings, or can Research tells us that the trauma tion, including sexuality and relation- offer it as an option. Either way, if experienced by crime victims with ships. These issues then need to be ten or more students join, they disabilities is just as severe as the discussed in relation to developing receive a discount off the already low trauma experienced by people intervention strategies and facilitating associate member rate. The discount without disabilities.Additional healing in an attempt to reduce amount increases as the number of barriers include lack of sexuality victimization. Personal safety/sexual students signing up increases. education, social skills, vocabulary assault risk reduction education is a and co-operative multi-agency continuum. General safety guidelines Regardless of how many students services. should be at one end and sexual join, TASH provides a year's worth of assault risk reduction guidelines back issues of the journal to all In principle most family members should be at the other end of the students signing up under this plan. and professionals acknowledge all continuum. This means your students will start people have the right to make the semester with a year's worth of decisions about their lives, to be cutting edge research on their shelf secure from violations of their and can build their collection over bodies and personal space, and to Terri E. Pease, Ph.D., is Program the years to come. Under this plan, Director-Victim Services at Safe Hori- live in a society free from violence. " students receive all of the regular zons in New York City. Dr. Pease's All people" includes people with membership benefits during the specific interest is in working with coming year in addition to an disabilities, no matter how signifi- adults with cognitive disabilities on extra full year's worth of journals! cant their disability. The "dignity of issues of sexuality, sexual assault and risk" is a fundamental building relationships. She is associated with the block in human development. Institute on Disabilities-UAP at Temple An introduction to TASH is likely to Society (parents, educators, law University and will be part of the be one of the most valued resources enforcement, disability and victim Criminal Victimization and People with you can offer students as they enter service professionals, self-advocates, Disabilities panel at the TASH 2000 the disability community in their conference in Miami Beach in December. etc.) has the responsibility to professional capacities. To receive materials or to learn more about educate and empower individuals Dr. Pease may be reached by e-mail at regarding these rights. TASH's Student Membership Pro- [email protected] gram, contact Rose Holsey, 410 -828- Teaching personal safety/ sexual 8274, ext. 100 or e-mail: assault risk reduction strategies is a [email protected]
J. PAGE 20 TASH Newsletter, August 2000 ONE FAMILY'S ST RY: FR M TRAGEDY TO TRIUMPH
THE NEVERENDING STORY: ENDING IN HAPPINESS WS, BY AUDREY BADGER It's been several years since I've read the After the rape, the suspect was convicted We try to keep her involved in various collection of newspaper articles that by a jury and was given a 5-10 year activities such as Special Olympics and tell the story of the "unfortunate inci- sentence. her job as a school cafeteria worker. dent" that disrupted the life of our family While these endeavors do help to keep and appears in my mind even now A year and a half later, the suspect's her involved and occupied, we continue seven years later as a horrible night- family filed an appeal and the verdict in to pray that the memories that are vividly mare. This one act of violence lies deep the case was eventually overturned. Thewith us all will one day be replaced with in the minds and hearts of a father, a suspect was set free and is now preparing happier memories in our lives. We firmly mother, a brother, and the victim herself to become an attorney. However, our believe that with God's help these things my daughter, who has Down Syn- story doesn't end there. are possible and that our daughter will drome. once again become the happy, secure There are no headlines that tell the story individual that she once was. I reviewed the newspaper clippings in of the present. How today, 7 years after order to present an accurate account of the attack, our daughter, now 27, the events that took place from May 1993 continues to endure the scars left behind until January 1999. How naive of me to as a result of the crime committed Audrey Badger will participate in think that I would have forgotten even against her. the panel discussion, Criminal the slightest detail of what had occurred. Victimization and People with As I read, I knew that I had not. She no longer goes out into our neigh- Developmental Disabilities, that will borhood alone. Not since that day in be held at the 2000 TASH annual The newspaper headlines read as follows 1993. Nor does it seem she will return to conference in Miami Beach, Florida, (and are listed here in the order in which the many hours of enjoyment that she December 7-9. various parts of the saga took place): once experienced riding her bike and greeting neighbors as she rode through- (1995) "Alleged rape victim found out our development. competent to stand trial" (1996) "University of Penn. student Everyone knew her and loved her! Now found guilty" everyone misses her "hellos" and warm (1996) "University of Penn. student smile because she remains inside listen- sentenced for rape" ing to music or watching videos. Fear (1998) "Penn. student convicted of has griped our daughter's life. rape appeals to Supreme Court" (1998) "Supreme Court rules man Everyday she goes through her usual There is still time to needs new rape trial" ritual of checking each door and window submit a proposal to (1999) "Man escapes charges of in our home to see if they are securely present a poster session raping mentally challenged young locked. Our daughter is presently seeing at the 2000 TASH woman" both a psychologist and a psychiatrist Annual Conference. If (1999) "Resident freed; charges who is able to dispense the medication you would like to dropped" that she takes. She has been diagnosed as receive an application, having post traumatic stress disorder or if you need addi- The story began with the rape of a young (PTSD). tional information; woman with Down Syndrome who was please contact Kelly lured into a secluded area only a few Our daughter has flashbacks, hallucina- Nelson by e-mail yards away from her home. The suspect tions, and shows signs of depression. The
15 9 PAGE 21 TASKewsleNer,ugust 2000 THE HIDDEN VIOLENCE
Every year in America an based. The parallels between domestic estimated 3 to 4 million women violence and caregiver violence are are beaten by their life partners. clear. Domestic violence is a pattern of Every year, 1,000 women are killed by Violence Against Women coercive behaviors that may include their husbands, boyfriends, and with Developmental physical, sexual, and/or psychological former partners. Studies show that assaults, in addition to social isolation, 18% of women report being sexually Disabilities: deprivation, and intimidation. When a assaulted or raped in their lifetime The Hidden Violence woman with a disability is put in (Department of Justice, 1998). Nearly physical danger, or controlled by the three decades of research, work by threat or use of physical force by an battered women's shelters and crisis intimate partner or caregiver, she is a centers, and a variety of interventions victim of domestic violence. This have revealed that these statistics are crime is motivated by a need for power not limited by income bracket, race, and control. The perpetrator uses fear region of the country, or population and the threat of physical harm to density. Yet within the area of violence control his victim. Very often the against women, women and girls with perpetrator controls the individual's disabilities remain underserved. Despite access to financial resources. He may evidence showing that gender based reported being sexually assaulted, almost use his physical and economic control violence is perpetrated against women 50% had been assaulted 10 or more times to limit the victim's access to transpor- with disabilities at a rate much higher (Sobsey and Doe, 1991). tation and medical care, particularly if than the general population of women, her care requires regular appointments. there is a paucity of information, exper- Lenore Walker, who introduced the idea tise, and services available to them. of the cycle of violence, described Inherent within the framework of the When the conversation turns to gender- battered women: "Battered women caregiver/client relationship is the based violence, women and girls with include wives or women in any form of potential for abuse, particularly when developmental disabilities are usually leftintimate relationships with men" (1979, the victim is isolated or segregated out. xv). from traditional community relation- ships and supports. According to the According to research, most people with In the case of women with developmen- literature on domestic violence, a key disabilities will experience some form of tal disabilities, the description becomes predictor of being a victim of domestic sexual assault or abuse during their more blurred. An "intimate relationship" violence is social isolation and lack of lifetime (Sobsey and Varnhagen, 1989). could also be defined as one with a social support (Straus et. al., 1980). Victims who have some level of intellec- caregiver, attendant, or personal assis- This is of particular concern for tual disabilities are at the highest risk of tant-individuals who interact with these women and girls with developmental sexual violence (Sobsey and Doe, 1991). women at the most intimate levels disabilities, who report less social Persons with developmental disabilities (personal care or health care for ex- activities and less involvement in have a 4 to 10 times higher risk of ample). Studies reveal that the largest community life than their non-disabled becoming crime victims than persons group of offenders are disability service peers. According to the International without developmental disabilities. One providers; 67% who sexually assaulted or study of alleged crimes against people abused people with severe to profound with disabilities revealed that 90% cognitive disabilities contacted their There is a general assumption that involved sexual offenses (Carmody, victims through specialized disability crime victims with developmental 1991). Both males and females with services (Sobsey, 1994). Turk and Brown disabilities do not need or require developmental disabilities are victims of report that 98% of sexual assault/abuse legal action, nor are they compe- sexual violence, however women offenders are male (Turk and Brown, tent to testify once in the legal experience sexual violence at a higher 1992) and Margolin reported that, system. ..."Incidents" against these rate than their male counterparts. Sobseycontrolling for relative caregiving time, victims are judged to be "abuse and cites 78.9% females compared to 21.1% male caregivers abuse those in their care neglect" rather than crimes subject of males in research from the University more than 6.5 times as often as their to the criminal court system. of Alberta (Sobsey, 1994). Consistent female counterparts (Margolin, 1992). Consequently, offenses are handled with this, a number of other studies on This fact, coupled with the overwhelm- through administrative channels rates of sexual assault against women ingly sexual nature of the abuse and within a group home or institution. with developmental disabilities reveal assault, leaves no doubt that the majority that over 80% had been sexually as- of crimes that women with developmen- saulted (Hard, 1986). Of those who tal disabilities experience are gender- Continued on page 23 PAGE 2216 TASH Newsletter, August 2000 THE IDDEN VIOLENCE
Violencegainst men develop innovative programs, publica- would be taught by women with and tions, and research to reduce violence without disabilities. witheve1.11. mental against women with developmental 11.isabillities disabilities. Descriptions of each of the The mission of the Personal SPACE Continued from page 22 projects are available on the ADD's (Safety, Planning, Awareness, Choice, website at http://www.acf.dhhs.gov/ Empowerment) program is to empower Center for the Disabled, 56% of persons programs/add/pns02.htm. women with disabilities to take greater with disabilities report that their disabil- control of their lives by increasing their ity prevents them from getting around, The Arc of Maryland's Personal SPACE ability to protect themselves. It is hoped attending cultural and sports events, or Curriculum that the program will increase participant socializing with friends outside their self-confidence, improve problem-solving homes as much as they would like. This While a number of promising, widely and decision-making skills, including figure rises to 67% among somewhat scattered curricular responses to violence ability to problem-solve with peers and against women with developmental severely disabled individuals and to 79% intimates; and produce heightened among very severely disabled individuals. disabilities have been developed, in assertiveness and improved communica- (Louis Harris and Associates, 1986). researching such curricula The Arc of tion skills. The eight core classes in the Maryland did not find one that had curriculum are: Complicating all of this is the general embraced the self-advocacy movement in assumption that crime victims with all aspects of the curriculum develop- 1. Orientation developmental disabilities do not need or ment, training, and evaluation. In 2. Sexuality require legal action, nor are they compe- Maryland, self-advocacy projects and the 3. Healthy Relationships tent to testify once in the legal system. Self-Determination Initiative support the 4. Sexual Harassment According to Alan Abeson, Ed.D., former belief that people with developmental 5. Sexual Assault executive director of The Arc of the disabilities should live in their communi- 6. Domestic Violence United States, these "incidents" are ties, where they also need to be safe. 7. When Someone Who Cares for You judged to be "abuse and neglect" rather Hurts You than crimes subject to the criminal court In 1997, The Arc of Southern Maryland 8. Safety Planning system. Consequently, offenses are formed a partnership with the Calvert handled through administrative channels County Abused Persons Program to train A ninth class, self-defense, is recom- within a group home or institution. A their staff on working with women with mended, but is typically done by self- woman with a developmental disability developmental disabilities, and those defense experts. who is raped may not have a choice involved in the training wanted to build about bringing charges, and is therefore on that success. The Arc of Maryland The success of The Arc of Maryland's unable to use the judicial system. If she had experienced phenomenal success project will be based on whether the does gain access to the criminal justice with its Know Your Rights project, a curriculum can produce measurable system, she will likely interact with training workshop developed and taught changes in knowledge and attitudes police, attorneys, judges, and victim by people with developmental disabilitiesabout violence among those women services that have little experience in that educated others about their rights, exposed directly to the curriculum and prosecuting a case in which the victim and the Ask Me! Project, a quality thereby reduce violent incidents in has a developmental disability. assurance project in which people with women's lives, potentially influencing developmental disabilities interview their resiliency to domestic and sexual In 1997, the Administration on Develop- others receiving services through the violence. mental Disabilities (ADD), in response to State Developmental Disabilities Admin- the alarming statistics and an overall istration about their satisfaction with the The Personal SPACE curriculum will be focus on domestic violence by the services they receive. finalized and available through The Arc Department of Health and Human of Maryland for interested parties by Services, funded four projects of national Building upon the success of those October, 2000. significance addressing violence against projects, The Arc of Maryland's Gender Catriona Johnson currently works for the women with developmental disabilities. Violence Prevention Research and Development Team, a group consisting of Maryland DD Council. She may be contacted The Metropolitan Organization to by e-mail at
Linda Till was working at a nursing home/ institution when she met Becky, then a small girl with cerebral palsy who for all intents and purposes had been left at the institution. Linda became attached to Becky and then arranged, with her husband's help of course, to adopt Becky. In the years that followed they became advocates and litigants for school inclusion. As she got older, Becky Marsha, Gunnar Dybwad and Jack at the 1997 TASH became an advocate in her own right. They Conference in Boston. are leaders. This, of course, was one of Marsha's gifts, to see people who have around, laughing and socializing as they got leadership qualities and to help build support the job done. around them, to ally with them, to create change. Marsha had a wonderful sense of humor, always critical, always subversive, always I only know the story second hand from humanizing. She loved to laugh. She loved friends and from a Canadian radio news to conspire for change. She loved to bring report about Judith Snow and the Joshua people together. Committee that Marsha helped form to support her. Judith was living in a nursing The other day I was thinking about all of the home, cut off in many ways from the world people who Marsha introduced me to who when Marsha met her and began to talk to then had a significant impact on me.I won't her about getting out and getting engaged in Remembering a Friend, Marsha Forest try and list them all, but I can't help mention- social change. Who could have predicted that Doug Biklen ing a few. Rose and Dom Galati and their Judith would come to be one of the leading daughters Felicia and Maria, Linda and King disability rights thinkers and activists in the Well over 20 years ago I was in Toronto to Till and their daughter Becky, Catherine world? Marsha could. give a speech on inclusion. After the speech, Woronko and her father Stan, and of course Marsha Forest wanted to talk about creating a Judith Snow. Rose Galati is a teacher and Summer Institute on Inclusion, to be based at staunch inclusionist who, along with the the Roeher Institute in Toronto, and spon- Woronkos and Tills helped me see that the sored by McGill University in Montreal. For one place in society where full inclusion my wife and I that began a series of summers really does exist, no holds barred, is in some where we would travel to Toronto and families.I spent many evenings talking to the Montreal to teach two week-long, intensive Galatis, watching Toronto Blue Jays baseball courses on inclusion and qualitative research, games with them, visiting the girls' schools, respectively. and learning from them about how they were making inclusion work, even when at first the Marsha, Judith Snow and Norman Kunc in 1979. It was an exciting time, for in many ways this schools were reluctant, even obstructionist was in the very early days of classroom toward them. Rose has a way of building It was through Marsha that I met: Gordon inclusion for students with significant community, of creating space where her Porter, a leading advocate for inclusion in disabilities, and Marsha knew that with her daughters could make friends, where others New Brunswick; and Margie Brown, an Summer Institute, she had a chance to could appreciate who they were. When inclusion professor and advocate and parent influence an entire nation, as teachers from Marsha first introduced me to Rose, the in Nova Scotia; Joe Whittaker, and inclusion British Columbia to Nova Scotia would come introduction was filled with the most professor and activist in the middle of to learn about inclusion and then return to glowing, reverential praise for this "wonderful England; and Norman Kunc! Yes, Norman their communities to effect change. Little did woman." That was Marsha, she took such too.At the time he had just written a little we know that her work would in years hence pride in finding people who were open book called Ready, Willing and Disabled. become international. minded, people who liked to stand up for Marsha seemed to know so many people. She change, people who wanted to be part of a was the ultimate networker of people Many of us at TASH will always think of social movement. working at the grassroots level.I'd say that Marsha whenever we see flyers placed on we have no idea how much Marsha's net- seats at plenary sessions, for it was Marsha working power will be missed until it finally who introduced this strategy of grassroots sinks in in the months ahead that she is no communication. It seems that for years, at longer with us, except that I know she taught each of our annual conferences, no matter a lot of us well. The people she connected what time of day the plenaries were held, with are all networkers themselves. every seat would have a flyer for Marsha's Summer Institute, as well as a copy of Marsha's Summer Institute classes became Inclusion News. I never saw who put them gathering places for conceptualizing change out on the seats, so all I could do was imagine Marsha and a cadre of collaborators scurrying Marsha and Rose Galati at the 1999 Toronto Continued on page 25 Summer Institute. PAGE241 CI 2 TASH Newsletter, August 2000 lIZEZIEG6MEIMIRTS RZPRZSM PO EST
Remade:4.49 712a44 4 Sgeye lezmeue70,:ea probably smallest, Thai restaurant in Toronto, taught us so well. Most of all, we know you flugrat 15, 1942peme 2, 2000 the Thai Shan Inn. Of course Marsha was loved us. TASH is so rich for having had you long since friends with the family that owned as a teacher, member, collaborator, and friend. Continued from page 24 and ran the place. In fact, she seemed to know the people and their children at every restaurant in town. Thai Shan really was tiny, and it had the best, and often hottest Thai I met Marsha when I was a graduate student food around. I've never found a better green at the University of Wisconsin in 1981. If I papaya salad anywhere. Marsha loved to tell think about it now, I can only remember a us about great, inexpensive, ethnic restau- couple of things about this first encounter.I rants, and often went with us to them, remember thinking that Marsha was not of including Malaysian, Carribean, and Chinese, this earth with her ideas about full inclusion. as well as fantastic Vietnamese noodle shops . I may have even rolled my eyes. Most of all I She also liked introducing us to Just Desserts, remember her energy. It was all over the a remarkable dessert place that had rows of room and it was this that moved me to pies and cakes to choose from, at least 50 consider her ideas about full inclusion. (L-R) John McKnight, John O'Brien, Judith every day. And more often than not, as we'd Snow, Jack and Marsha make our way through these, we did so with Over the years we became friends.I was in small crowdsMarsha, her husband and Texas with her at the time she discovered her but also for meeting those directly involved in collaborator, Jack Pearpoint, and lots of first breast lump. I was so sure that she it.It was in Toronto that I first had the friends. Wherever Marsha went, making would be fine. After that we talked and e- experience of teaching a class about school friends was intimately connected to making mailed; and always bargained over the price inclusion where people with significant change. of books she wanted to sell through the disabilities were in the class, along with Inclusion Press. Her openness and directness nondisabled friends. One of the people whom was always a challenge to me. One time Jay Marsha invited, Catherine Woronko, had Klein brought me a Polaroid of her and Jack difficulty with speech, but her high school taken to assure me that they were fine. It is peers had learned a lot about what she liked still on my bulletin board with another of her to do from her other ways of communicating. talking passionately, with her hand on her Together this young woman and her friends heart, to a group of teachers in their first hung out in the class, and from time to time encounter with that energy. the friends contributed their ideas about school life to the discussion we were having I know her contribution and her effect. She on inclusion. If anyone ever lived her ideas, helped me see a different world. Marsha did. By Jan Nisbet Marsha, Herb Lovett and an unidentified friend There are many other things I will carry with me about Marsha. Some mainly personal. During the past 15 years or so, TASH became a Each summer that my wife and I traveled to special place for Marsha. It was at TASH Canada to teach, Marsha somehow arranged a that Marsha found, as many of us do, one house for us to be house sitting in while place that truly welcomes parents, people someone she knew was away for the few with disabilities, researchers, teachers, weeks we were in town. And one summer shecommunity inclusionists, and other profes- scheduled for our young children to attend an sionals collaborating together, and where inclusive summer program that she had there is an unshakeable commitment to created. All over Toronto there were summer inclusion and other forms of social justice. Get Together Programs that Marsha was Marsha didn't just come to participate, she / instrumental in founding; our son and came to create. She introduced a "strand" of daughter attended the Winona Street Get sessions that became one big community, Together, just a few blocks from Marsha and creating projects, creating plans, and making Marsha and Shafik Asante in 1997 Jack's house and from the house she had commitments to effect change. Marsha arranged for us to stay in. And I remember brought diversity to TASH, bringing in new that each day Marsha would grill our kids members, lining up keynote speakers, pushingI remember Marsha about what had gone on at the program, what inclusion in new directions. One year TASH Anne M. Donnellan they had learned, who they had met, where met in Chicago and Marsha brought a large they had gone on field trips. She was so group of teenagers from an inclusive school When I remember Marsha, I see her sur- genuinely interested in them, and they loved program to talk about inclusion from their rounded by balloons and drawings and her for it. She engaged them in conversation, perspective. For many of them, this was their many, many people making lots of noise. and they knew she took them seriously. We first experience to speak in front of an People who live diversity. Not just us were so lucky to have had this time together audience, and Marsha made it happen. walking, talking white folk who so often and for our kids to know Marsha. exclusively inhabit the space as we talk about I don't know how to stop talking about During those summers I especially remember Marsha. And of course I won't. Marsha, you how Marsha introduced us to the best, and Continued on page 26 PAGE 2516 3 TSIM Newsgetter, August 2 000 REMEMBERING MARSNA FOREST
Rescesdeta, Nevus& SWidet0240 7w:ea knew immediately this must be Marsha people by developing PATH and MAPS. They Forest. That started a 20-year professional came up with interesting and different ways Aluguat 15, 1942Pate 2, 2000 and personal relationship and friendship that to think about a brighter future for people. Continued from page 25 has not only changed our lives, but the lives Throughout the world today, on walls of so many others around the world. everywhere, people have bright, colorful and exciting plans being thought about and diversity and While no one person is responsible for the worked on because of their efforts. inclusion. She was inclusion movement, Marsha deserves much always surrounded of the credit on pushing this issue in a very Marsha enjoyed eating Chinese food, scuba by people who public way. She wrote, lectured, and practiced diving, travelling, reading, and spending time lived the issues and inclusion in all parts of her life. She became a with friends. But most of all, her husband, Marsha cared for beacon pushing for all children to learn Jack, was always in the center of everything and about them at together. Her lectures were filled with raw she did and thought. Marsha's love for Jack least as much as the energy and excitement about the possibilities was always very apparent and beautiful. issues. of all children learning together. She believed with all of her heart and soul that all children If you can answer the question "have you Marsha was a can and should learn together. I was on the made a difference during your lifetime or wonderful spirit for TASH Conference Committee at that time and not?" then the only answer is that Marsha Marsha, age 2 change. She took had suggested to Lou (Brown) that Marsha made a significant difference during her life. on complex issues would be a wonderful speaker at our It wasn't so much the products (MAPS, and systems and brought them to the human conference. While Lou had some doubts, he PATHs, Circles, and Inclusion facilitator) that level. Inclusion was possible and critical supported this idea. Marsha's lectures at she produced, but the energy, excitement, because it made possible the human connec- TASH were thought provoking and inspira- values, beliefs, and heart that she brought to tion. She lived her own life to the fullest, tional. She pushed the audience to think us that really mattered. treasuring each day as she raced ahead to outside of the normal boundaries for students outlive her own human frailty and illness. in school. She pushed TASH to move forward Over the past 20 years, my relationship with And she did it on rollerblades for heaven's in its support of inclusion for all students. Marsha has been close and personal and at sake! times, more distant. Our paths have gone in She knew the same direction and in different directions I didn't always agree with Marsha. At times, the power of over the years. There were times we did not that was because she was so far ahead of me. children and see each other as frequently as I had or maybe Even when I disagreed, I admired her spirit the critical she had wanted. Then there were times such and her intention. She played a unique and importance as in San Francisco several years ago that we important role in all our lives and at our of friendship got away just the four of us (Jack and Marsha meetings. I don't know who will do it in her in people's and Cindy (my wife) and 1) for Chinese food, stead. lives. rich desserts, wonderful conversation and lots Marsha, Jack (and lots) of laughs. These were the times At TASH in Miami I'll be looking for the Pearpoint that were the best and that I will always crowd, listening for the noise and the (Marsha's remember forever and ever. Thank you for laughter and hoping there will be at least a husband), being my friend! few balloons to remind us that the true High school graduate Marsha (1959) and Judith measure of our effectiveness is how well we Snow were connect and enhance the human spirit in + + + the first people involved in thinking about our own lives and those whom we mean to circles of support/friendship. She not only serve. Marsha Forest lectured about friendship and circles of Dave Hingsburger support, she also was personally involved. Marsha could light up a room with her stories A small group of parents gather to talk about Never doubt the power of friendship and passion about the power of friendship. their children's future. The discussion is She excited many families and educators to Jeff Strully changed from only short years ago. Now they think about and work on friendship for all talk about relationships, about work, about a children. In 1980, my wife and I were travelling to life expected. Without knowing it these Toronto to attend a conference. Prior to parents are paying tribute to a woman whose Marsha came up with many other ideas such leaving Kentucky for the conference, a vision, for their children yet unborn, was one as the integration facilitator role. While the mutual friend, John O'Brien, had told us of full participation in life and in society. story is a long one, Marsha hired Anne Marie about Marsha Forest and the work that she These parents have children who have always Ruttiman, who was the first integration was beginning to do helping to think about been included - always been home. It was a facilitator, to help Katherine find her place in children in schools alongside their non- hard won battle, too soon forgotten. Fought school. This started the integration facilitator disabled peers, in integrated recreational by a Forest who never lost sight of the trees. role, which has helped many children become programs such as the Summer Get Together, included in their local school. and the development of circles of friends. I remember the first time I saw Marsha While at the conference we found ourselves Forest. She was presenting at a conference co- Marsha, along with Jack, Judith, and John on the elevator with a very energetic, enthusi- sponsored by the education system along (O'Brien), was interested in figuring out how astic and loud woman from New York. We to think about and plan for better futures for Continued on page 32 PAGE 261 F3 4 TASH Newsletter, August 2000 NEU L P OTECTIO, UNEQUAL JUSTICE
mary, which is not her real thorough of these studies found that name, is a woman with 80% of those women who have been psychiatric disabilities sexually assaulted have been assaulted who had been doing quite well. A more than once and 50% have been friend of mine who works in a assaulted more than 10 times. sexual assault program told me her unelua! story. She was living on her own in How could such a dramatic problem midtown Sacramento. Her of focused violence in our society go psychiatric symptoms were under Protecfion9 generally unnoticed? Wouldn't we control. hear about this and know about this if unelti2! it were really happening? This Then, one day, her condition flared problem has not been the first of its up. A man on the street saw her type to go unnoticed. Child abuse, on her balcony and realized that I slice elder abuse and domestic violence all there was no one to help her. He share a similar history. forced his way into her apartment BY DANIEL D. SORENSEN and raped her. He told some of his Decades ago people did not believe friends. First one, then later there was a widespread problem of another also came to her apartment child abuse, nor did they hear many and raped her. reports of child abuse. They simply were unaware of its existence other But her ordeal wasn't over. She than as a very rare occurrence. was unable to seek help because of rate of sexual assault was 10.7 times Gradually, over decades, it has emerged the severity of her psychosis and the higher for people with intellectual as a recognized major social problem. trauma of the rapes. Finally, a disabilities (mental retardation) than for Elder abuse and domestic violence neighbor noticed that she was in somethe general population and 12.7 times experienced a similar history. The issue difficulty and reported it and she got higher for robbery. A study of a group of violence against people with disabili- some help. Help but no justice, as no with a different type of disability found ties is now beginning to make this same arrests were made in this case. similar results.It surveyed 278 residents slow journey. of group homes for people with psychiat- SIZE OF THE PROBLEM ric disabilities in Los Angeles. The study Mary's case is not rare. Eighty percent found that this group had a rate of of women with disabilities similar to serious crime that was 9.5 times the rate There is a widespread belief Mary's have been sexually or physi- of the general population. that the testimony of victims or cally assaulted according to one study. witnesses with certain disabili- There is a real but largely unknown Professor Joan Petersilia is a nationally ties will not stand up in court epidemic of violence against people renowned criminologist and the former since their testimony is "unreli- with significant disabilities in our director of the Division of Criminal able." This belief among society. Stories like Mary's, as horribleJustice of the Rand Corporation. She prosecutors, jurors and judges as they are, tend to got lost in the testified in 1998 before a California State does, in fact, make these cases crowd of crime stories that we Senate panel that the total number of difficult to win. But this belief is experience every day in the media. Asserious crimes against people with more a part of the pattern of the father of a son with significant substantial disabilities exceeds the total stereotypes and discrimination disabilities and as a long-time advo- number of crimes involving elder abuse, than a reflection of reality. cate for people with disabilities, I have hate crimes or domestic violence. known too many such crime victims Unfortunately, most of the Senate panel over the years. members were away on business during Professor Petersilia's testimony, leaving Research tells a disturbing story. Dick the panel's chairman virtually alone to REPORTING OF THESE CRIMES Sobsey, the leading expert in this field, hear about this crisis in public safety. I knew five women with intellectual reports that there is general agreement disabilities, each in their 30s, who lived among experts that people with The numbers are particularly grim in the in a California foothills community. significant disabilities experience area of rape and sexual assault. The four They lived in a group home run by a man serious crime at a rate four to ten principal research studies on this topic and his wife. The women were good times higher than the general popula- have found that over 80% of women and tion. One of the best studies, done by 30% of men with intellectual disabilities Wilson and Brewer, found that the have been sexually assaulted. The most Continued on page 28 PAGE 27 1 6 5TASK Newsletter, August 2000 UNEQUAL PROTECTION, UNEQUAL JUSTICE
Vtiequal Protection VtiequalThey have concluded that there is a group, Justice greater underreporting of cases involving when one victims with developmental disabilities Continued from page 27 of the board than of other populations. More dra- members, matically, another study found that only Jane (not 3% of cases of sexual assault involving her real people, kind and dependable. But people with developmental disabilities name) something was wrong and I could never are ever reported to authorities. This started to figure out what. I often asked them if compares with a reporting rate of sexual silently cry. there was anything wrong. They always assaults of 32% for the general popula- She then told me everything was fine but with a tion. got up and sad, nervous glance away as they said left the this. Why is this? One reason is that there is a room. widespread perception among people One of the women formed an especially with developmental and other more As soon as I close friendship with one of the staff significant disabilities, their families and had finished, I followed her out to the where she worked. She finally, fearfully advocates that reporting crimes may hall to apologize. Jane, who was in her and bit by bit, eked out the story of what often be useless. I can't count the 40s, told me her story She said that her was happening to her. The owner of number of times I have been told, "why father and brothers had raped her as a their group home was systematically should I report the crime, nothing is everchild. She was then sent to an institution raping her and the other four women. done about it." as she had a mild intellectual disability. This had been going-on for the last five years. They had been terrorized and were There is evidence that by far the largest She lived in this institution (not in too afraid to report these crimes. If that single number of perpetrators 'of these California) for the next 30 years. She one woman had not developed such a crimes are care providers. They are in a said she was sexually assaulted at least close friendship with that staff person position to suppress the reporting of once in each of those 30 years. She and found the courage to report on the these crimes and to pressure their victimsreported each and every crime, but there person who had extraordinary power into remaining silent. This is also one of were no arrests or prosecutions in any of over her life, these crimes might still be the reasons for the higher number of those cases. She left that institution and continuing to this day. repeat crimes, as they often continue to has finally lived the last eight years of her victimize people under their care as they life free of sexual assault. The experience of these women illus- actively prevent their victims from trates a central problem. The high rate of reporting the crimes. One prosecutor from a southern Califor- crime against this population is bad nia district attorney's office casually enough. What makes it even worse is In Canada, a University of Alberta study announced in a meeting that, "We never that so few of these crimes are reported found that residents of care facilities who prosecute sexual assaults against victims or, if they are reported, few are believed. had been criminally abused, as well as with intellectual disabilities because you In this particular case it took five years non-abusing staff, were reluctant to comecan't win them." Fortunately, an before it finally got out. Police, prosecu- forward for fear of reprisals or retributionAlameda county prosecutor immediately tors and the courts can not take action from administrators. responded by stating that, "We routinely when they are not informed of crimes. prosecute such cases and we win most of I believe that administrators may find them." Every police department, sheriff's office themselves in a situation that to report a and district attorney that I have con- violent crime can lead to negative There is a widespread belief that the sulted in California reported that they publicity which may involve questions testimony of victims or witnesses with have very few cases involving crime about their competence, damage their certain disabilities will not stand up in victims with disabilities, dramatically less careers, or even lead to losing their jobs. court since their testimony is unreliable. than the rate of serious crime against this Minimizing the severity of the reported This belief among prosecutors, jurors and population would predict. This is a criminal abuse, or deciding that it was judges does, in fact, make these cases practical indication that these crimes are unlikely that a crime occurred, avoids difficult to win. But this belief is more a being reported at a much lower rate than such risks. part of the pattern of stereotypes and for other crime. discrimination than a reflection of reality. INVESTIGATION AND For decades, the Seattle Rape Relief PROSECUTION Project has worked with victims of sexualI was giving a talk about violence against assault with developmental disabilities. people with disabilities to an advocacy Continued on page 29
PAGE 28 0 0 TASK Newsletter, August 2000 UNEQUAL PROTECTION, UNEQUAL JUSTICE
VtiequA Protectiora, ViiequAlawareness of the problem of crime and But this will happen only if we all demand justice violence against people with disabilities. that our leaders and our institutions act to Continued from page 28 California's Governor Gray Davis has address violence against citizens with proposed a first in the nation state disabilities. government program to address crime
MM. and violence against people with disabili- ties. This initiative has the potential to The President signed the Crime Daniel Sorenson is Chair of the Victims with Disabilities Awareness 1 become a national model. Gray Davis Calfornia Victims of Crime Committee. I Act into law in 1998. This law issued a statement during his campaign The Committee was founded seven years I requires that, for the first time, the Ifor governor stating that, "I will be a ago as a statewide coalition composed of National Crime Victims Survey collect'leader in ensuring that our citizens who over 30 organizations of consumers, information on crime victims with have substantial disabilities receive the advocacy groups, state agencies, service I disabilities.This survey is the single I full protection of the law and equal providers, labor and criminal justice I most important source of information justice." His "Crime Victims organizations.It has worked to educate I about the rate of violence and crime with Disabilities Initiative" contained in `in America. its members, the government and the his recently released budget delivers on public about crime and violence against this campaign promise. people with disabilities. Nitza Perlman did a study in Toronto on the accuracy of the testimony of adults The President signed the Crime Victims Questions about the Committee's work with intellectual disabilities compared to with Disabilities Awareness Act into law or the information contained in this university students. She found that the in 1998. This law requires that, for the article may be directed to Mr. Sorenson testimony of the adults with intellectual first time, the National Crime Victims at dsorense@dmhhq. state . ca.us disabilities was equal in accuracy to the Survey collect information on crime testimony of the university students. As victims with disabilities. This survey is in Alameda, these cases can be pros- the single most important source of ecuted and won with the right skills, information about the rate of violence t.s attitudes and with reasonable accommo- and crime in America. The act also dations to the specific disability of the requires the U.S. attorney general to victim or witnesses. conduct a national study on crime against people with disabilities. Dick Sobsey reviewed a number of studies on this topic and reported that From nationwide conferences to a U.S. they all reached at least one common Justice Department seminar to federal grants in five cities, national awareness is conclusion: that convictions of these growing, The results of the Department Have you ever thought about the offenders are rare in spite of the chronic distinctive characteristics that make and severe nature of the crimes. He of Justice study on crime against people with disabilities will be presented to the your state or country such a unique stated that overall there is not good place in which to live? We would love U.S. Congress and will stimulate recom- prosecution of these cases but that it for you to share the tastes, sights and varies greatly across different criminal mendations for further action that the sounds of your favorite places with justice systems. Congress and the administration should others who may not have a chance to take to address this problem. journey to your corner of the world. Sobsey also reports that a number of studies have found that potential perpe- Many people are now watching and Why not make a donation to the TASH hoping for more substantive reforms. Silent Auction?! Not only is the fair trators have a belief that they are unlikely market value of all donations tax to be arrested or prosecuted for crimes People with disabilities comprise over 10% of the population and if you add deductible, but proceeds from the against this population. A psychologist auction will benefit the TASH Confer- their family members, the total represents at Atascadero State Hospital told me that ence Scholarship Fund. The Fund is he had overheard two sex offenders over 40% of the population or some 14 used to assist people with disabilities, talking. One said to the other, "Get a job million Californians. We are slowly and parents and other family members to in the D.D. (developmental disabilities) inevitably waking up to the reality that attend future TASH conferences. system when you get out, it's easy we, and our loved ones, are not receiving pickings." equal protection or equal justice. If you would like to make a donation or find out more details, please contact Priscilla Newton, Director of Marketing, HOPE Maybe someday stories like Mary's or Jane's or the five women I knew from the at 410-828-8274, ext. 102 or send an e- The good news is that all this is begin- mail to [email protected] ning to change. There is a growing foothills will be far less commonplace. 167 PAGE 29 TASHNewsletter, August 2000 LAW ENFORCEMENT AWARENESS OF AUTISM
Calvin's last day started with an spokesman said. She pepper-sprayed him and ominous decision: despite the post- he released his grip. incident assertion by Tom Nebel, a Law Enforcement Champion family attorney, that Champion went into the store, grabbed Calvin's records at the agency clothing and wiped his face. The officer then Awareness of responsible for his care indicated got him to come out into the foyer. that he should have been kept away After two other officers arrived, Champion Autism: from "stressful, new situations" and came at Miller again, this time grabbing her that he didn't "do well in crowds", by the throat. Another officer used pepper In Memory of his personal care worker took spray and all three officers fought to restrain Calvin, along with her 3 year-old Champion. Calvin Champion, Jr. son, into the children's apparel store that day4. "She set the chain of Champion "pulled free several times before the BY DENNIS DEBBAUDT events in motion where Calvin officers were able to take him down to the became agitated, Nebel said5. The carpeted foyer," the spokesman said. care worker was a graphic designer with three weeks of experience As the man struggled, a set of handcuffs were working with people with disabili- put on each hand and joined together as he lay ties when the incident occurred. face down. When the man began to kick The care worker insisted, "I got full violently, a cloth strap was put around his On Sunday, April 30, 2000, Calvin training, all I needed." ankles. While on the floor, Champion vomited, Champion Jr. went on the last prompting officers to call for medical assis- day trip of his life. While in the Nashville police said this is what tance. care of a paid personal attendant, the 32- happened: year -old non-verbal Nashville man, who Within three minutes, emergency medical had autism and mental retardation, died Champion, a resident of a group home run by technicians arrived. The police spokesman after an altercation with responding an agency that contracts with the state to said that Champion "did not appear to be in police officers outside a Babies "R" Us provide services to people with disabilities, distress." The fire chief, however, said store in Nashville'. Calvin died sur- was taken to the store just before 2:30 p.m. by Champion was still vomiting and paramedics rounded by people who had little or no the caretaker and her son. asked for the handcuffs to be removed, rolled knowledge or training about autism, Champion onto his back and performed CPR. predictable situations of concern and Upon leaving the store, Champion, who has care, or autism recognition or approach difficulty communicating, started moving from Four minutes later, an ambulance was on the techniquesknowledge and training thatside to side and rocked the van while seated in scene. Champion's pulse was faint, and he may have saved his life. the back seat. was transported to the hospital and pro- nounced dead. Following are some of the tragic facts of Then he patted the 3-year-old on the head, the Calvin Champion Jr. case and causing the child to cry. The caregiver This incident received major media suggestions on how we, as advocates, can couldn't get Champion under control and let coverage in the Nashville area. Calls for better support critical care workers and him out in the store's fire lane. better police training, the issues of poorly law enforcement professionals when they trained workers, civil rights abuses, work with or come into contact with After the woman got out of the van, Champion lapses in state care, and the inevitable persons with autism. There is a loud cry took her hand and patted himself on the head, filing of a federal lawsuit against the for public awareness coming from the which is supposed to be a calming influence, police and Calvin's care agency all autism community for recognition of and grabbed the caregiver's shirt and tore it. punctuated the city's news headlines in critical issues of safety and risk in the Fearful, she locked herself and her son inside the weeks that followed. State mental community which comes at the same the van, calling police. health officials stopped sending new time as these issues are being addressed clients to the contract agency that was with new informational, awareness and A responding officer arrived to find Champion involved, pending a further investiga- educational tools. hitting himself in the head with his fists and tion8. And all with good cause since open hands and hitting the van. When the there exists a general lack of understand- Described by health professionals who officer went to check on the woman and child, ing and education nationwide among not worked with him as a "gentle man"2, Champion came around the van toward her. only those who respond first to predict-
The officer backed away, but Champion '-8The Tennessean news reports from May 2- lunged at her and grabbed her shirt, a police June 22, 2000. 1 C.' 3 Continued on page 31 PAGE 30 TASK Newsletter, August 2000 LAW ENFORCEMENT AWARENESS OF AUTISM
Law Enforcement Awareness ofThe Harrisburg, Pennsylvania chapter of for use in late 1999 and addresses all Autism ASA released the award-winning "Autism appropriate issues for law enforcers. The Awareness Video for Law Enforcement/ Continued from page 30 curriculum is being considered for uses Community Service Personnel" in 1998. in other states and serves as a model for The video, produced through the efforts law enforcement agencies interested in of Judy swift, is now in use throughout training and information about current able incidents that involve children and the nation. The South Carolina Autism trends in policing. adults with autism, but often by the very society created a curriculum and video in industry workers who are responsible for 1999 titled "Autism and Informed If Nashville Police officers had been their care. Response". Individual law enforcement trained on autism issues the outcome professionals who are parents of loved regarding Calvin Champion Jr. may have Was Calvin Champion's Death ones with autism have embraced the been significantly different. If the Avoidable? training aspect of autism and are con- contract agency had been trained While a Nashville federal court judge or ducting training sessions in several states. regarding these risk and safety issues the jury may have an opinion, no one will Autism advocates throughout the nation outcome may have been better. But, ever know for sure. But there is informa- are now picking up the mantle of autism according to published reports, such was tion, curriculum and training available to education and bringing it to the attention not the case. provide care workers and police a better of law enforcement agencies, criminal understanding of autism, the issues of justice systems and legislators in their If representatives of the law enforcement risk and misunderstanding that children local communities. and contract training agencies had and adults and their families face undergone the training, they may have repeatedly, and information on approach These campaigns do work. Take the learned, among many other things, that techniques that responders and care experience of Lisa Mathews as a prime the person with autism "may be non- workers can utilize to de-escalate risk example. After a brush with disaster verbal, may not be able to give informa- situations. with an eloping son, Lisa, the Maryland tion or able to answer questions, may not mother of three sons who have autism, respond to a "Stop" command, may be Since the mid- to late 1990's autism singlehandedly began a campaign worthysensitive to touch, sound, bright lights, advocates have taken it upon themselves of the attention of any good advocate. odors, may have difficulty judging to create informational tools that help personal space; may stand too close or law enforcement agencies and emergency In late 1998, Lisa gathered together too fare away, may not recognize danger, responders better understand and information from the autism community may exhibit hand flapping, finger respond to persons with autism. An about law enforcement awareness and flicking, body rocking."9' understanding of the issues of concern to education. She decided to start at the top autism community familieschild and level of law enforcement in the state of They may have learned that the person adult elopement or "runners" Maryland. After a persistent campaign ofwith autism has a "tendency to run misidentification of behaviors as "suspi- telephonic and written communication children with autism are prone to wander cious persons" by uninformed passersby concerning autism awareness for law or run away at any time, may not be able resulting in 911 calls, false confession enforcement professionals, Governor to distinguish between a good stranger is now considered a priority concern for Parris Glendenning, the state's chief law (police) and a bad stranger that might many autism advocates. enforcer, wrote a letter of introduction hurt him/her, may not understand rights, for Lisa to the Maryland Police & may become anxious in new situations The Wayne County Society for Autistic Correctional Training Commission in when stressed out, a person that nor- Citizens (WAY/SAC)the Wayne County,Woodstock, Maryland. The Governor mally talks well may exhibit confused Michigan Chapter of the Autism Society expressed an interest in being kept speech, or become non-verbal stress of America (ASA) published a booklet in appraised of any efforts the commission may also trigger inappropriate behaviors 1994, "Avoiding Unfortunate Situations," might make to Mrs. Mathews request. or bring on a seizure, may not under- which described and addressed the Within three months, the commission stand consequences of actions, or the elopement and false confession issues. hired Dr. Darla Rothman as a curriculum concept of punishment has little Law enforcement awareness has been a specialist. Her first assignment? Create reasoning ability, and most likely does topic at ASA conferences since 1995, as curriculum on autism awareness. not know what is going on."91) well as other autism advocacy organiza- tions, including the Syracuse New York- The result is the first-ever, by the police based self advocacy organization Autism and for the police, law enforcement 9°-dFrom the Maryland Police and Correctional Network International, state autism curriculum on autism, "Why Law Training Commission's curriculum, "Why Law societies in Ohio and Wisconsin, and Enforcement Needs to Recognize Enforcement Needs to Recognize Autism." Autism-Europe Congress 2000 in Autism". The curriculum was released Continued on page 32 Glasgow, Scotland. PAGE 31 TASH Newsletter, August 2000 LAW ENFORCEMENT AWARENESS OF AUTISM
Law Enforcement Awareness of Disabilities." The workshop addresses Reoteotegnia9 Venda. Sofeletwicut evt.eat Autism situations of risk, how to access commu- ,4ccga4t 15, 1942 - peace 2, 2000 Continued from page 31 nity mental health services and supports, Continued from page 26 understanding of legal issues related to protective custody and involuntary with the system that supports people with commitment, and sensitization to the developmental disabilities. The room was They may have learned to "approach in a needs and experiences of persons with packed and the atmosphere hot before she quiet, non-threatening manner, allow for disabilities and their families. Veteran even stood to begin. Hostility. Purpose. delayed responses to questions, never and rookie officers give this training high Resentment. Determination. Anger. Hope. touch or pat on shoulders or near face; marks for usable information. Broward Rage. Will. All these things filled the air with such electricity that a bolt of lightning was avoid standing too close, (that) many are County, Florida has established a disabili- the only thing that could result. aggressive ("fight or flight reaction") if ties court held by a judge who is familiar with disability issues and thus able to touched by strangers, evaluate person for And it did. Marsha began to speak. And she make good decisions on the bench. injury; may have high tolerance for was Marsha the uncompromising. Marsha pain."9c the visionary. Marsha the bully. Marsha the Law enforcement agencies in the 21st caustic. Marsha the strong. She became the They may have learned "the first indica- Century are becoming increasingly aware flashpoint for the room. The focus of hope. tion of an unusual situation may be of the diverse communities that they The lightening rod for anger. I had never through the person's behaviors (which serve. Most welcome information and before seen someone with such passion for what was said, such righteous determination were probably the initial reason the advice on how to recognize and work for what must be, such dogged persistence police were called to assist), use all through circumstances and situations that can become volatile. Understanding for the change we must make. I left the available information: person's name, age, session drained. And challenged. And in autism, the people it affects and others appearance, statements from bystanders, some remarkable way, changed. She had types of behaviors exhibited, avoid the with serious disabilities is becoming demonstrated that passion had a place in impulse to act quickly, take time to assessanother part of the job for law enforce- what we did. She showed how one person the circumstances (time is on your side), ment professionals. could withstand a firestorm of controversy. maintain a safe distance until the inap- She defined and personified the difference propriate behaviors have lessened, Individuals and advocacy agencies need that one person could make. remain alert for sudden outbursts or to develop collaborative working rela- I would meet her again years later and learn impulsive actions, control the situation tionships with the law enforcement agencies that serve their communities. that Marsha's last name wasn't Forest, it was using communication skills rather than Andjack. I would meet a man who loved her, Once established, these relationships physical skill."9d with the same uncompromising zeal that she should bear the fruit of an increased demonstrated was possible in life, whose While we will never know if the training understanding of serious disabilities and name wasn't Pearpoint. It was Andmarsha. would have made a different for Calvin better outcomes when persons who have Champion, Jr. or others with autism disabilities encounter law enforcement around the country who have had similarprofessionals in field situations. Public fates, we can only hope that it would awareness and education remain our have made a critical difference. But most effective weapons against misunder- responsible advocates can make every standing and unfortunate situations. It is effort to bring this kind of information to never too late to start educating others the attention of those in first response about our loved ones. situations.
In Wayne County, Michigan, local Dennis Debbaudt is a 23-year veteran of Jack and Marsha (photo by Karen Levy) chapters of the Autism Society, Alliance law enforcement in the private sector and for the Mentally Ill, Alzheimer's Associa- the parent of a 17-year old son with autism. Diverse City Press, with which I am affiliated, had a display booth next to Inclusion Press at tion, and Arc have banded together with An active autism advocate, he has re- a TASH conference. Here Marsha Andjack, the community mental health agency, searched and reported on the issues of autism and law enforcement since 1991. along with Jack Andmarsha, held court. Their law enforcement community, corrections booth was a testimony to a life lived full of department officials, prosecutors, Mr. Debbaudt may be contacted by e-mail diversity and equality. Their booth wasn't emergency care and response profession- at [email protected] a sales opportunity -- it was a community als to develop a 16-hour workshop for happening. Jack, for whom a peer is the law enforcement personnel titled, point, presided over the booth and cared for "Effectively Working with Persons with Marsha with gentleness and humour. They Mental Illness and Developmental 0 Continued on page 39 PAGE 32 TASK Newsletter, August 2000 911: HELPFUL OR HARMFUL?
minutes, two EMTs and four more 911 Can Be officers arrived. Eric's parents repeatedly informed the officers that their son was having a seizure. Nonetheless, the Dangerous to officers tackled Eric, handcuffed him and taped his legs together. Several officers Your Health and the two EMTs placed Eric face down on the family's couch and knelt on top of BY BARBARA E. RANSOM and ALVARO J. him. Eric Stetter was pronounced dead MADRID on arrival at the hospital'
Alphonse Groman, a 75-year-old man, suffered a mild stroke in February of 1990 in his New Jersey home. A neighbor made a 911 call. The Township f you are a person with a disability dispatched the police and a medical that impairs your speech, hearing, or team. Mr. Groman was disoriented and 1mobility, makes it difficult for you to refused medical attention. An officer follow instructions, or if your disability tried to force Mr. Groman into a chair; he causes you to become unconscious or Charles Thompson, Jr. was a 40- resisted and became argumentative. disoriented, a call to 911 may be danger- year -old man who developed mental Family and neighbors claimed that the ous to your health. With the closing of disabilities following a suicide attempt at officer punched him in the mouth, large institutions, more people with age 14. His family made a 911 call placed him in handcuffs and took him to disabilities are living lives in the commu- because Charles had become violent and the police station. While at the station, nity. Advocates rely on The Americans threatening. He was armed with two mr. Groman sustained injuries to his face with Disabilities Act of 1990 (ADA),' machetes. Two Williamson County and head. The police charged him with touted as the Civil Rights Act for people (Tennessee) police officers responded to aggravated assault, disorderly conduct, with disabilities, to facilitate this integra- the 911 call. Charles had run out of the and resisting arrest. He was acquitted on tion into the community. The ADA does house and hid in the woods. The officers all counts.6 require local government agencies to confronted him as he came back to the make programs, services and activities house and ordered him to stop and drop Deadly mistakes can occur when un- accessible to people with disabilities. In the machetes. One officer who was trained persons respond to a 911 call. spite of this mandate, many local govern- peering around the side of the house shot With proper training, many of these ments are negligent of their duty to Charles dead with a shotgun. The officer situations could have been avoided or de- protect and serve all people within their fired his shotgun because he believed escalated to prevent serious physical jurisdiction. When this negligence Charles made a move to throw the injury and death. impacts on the services that a 911 call is machete at him.' designed to provide, the results can be 911 is a Service Covered Under the deadly. John Washington, a 17-year-old man ADA with autism and mental retardation, was The ADA regulations mandate that every John Jardine, a 25-year-old man, had playing in his front yard in Pennbrook, a government with 50 or more employees: finally gotten his seizures under control suburb of Harrisburg, Pennsylvania. enough to enroll as an undergraduate There had been several 911 calls about Hire or assign an ADA Coordinator, student at Arizona State University. In peeping toms in the neighborhood. As someone responsible for reviewing March of 1999, he suffered a severe John was looking in his window, two programs, services and activities to seizure. A classmate called 911. When police officers approached him. They determine their impact on people with the emergency medical team (EMT) and tried to handcuff him. John screamed disabilities. the campus police arrived, John, behav- and tried to run inside when the officers Perform a self-evaluation of all ing in a fashion typical for people who tackled him. John suffered a dislocated programs, services and activities to have had a seizure, staggered about in a shoulder!' ensure that they are accessible for people state of confusion and exhaustion. The with disabilities. EMTs tripped John and forced him onto Eric Stetter, 26, was at home with his Prepare transition plans for compli- his stomach. The campus police hand- parents on October 9, 1999. He suffered ance with the ADA for those programs, cuffed him. Forty-six minutes after the a violent seizure and his parents called onset of his seizure, John Jardine was 911. Two Hanover Park (Chicago area) pronounced dead at Tempe St. Luke's police officers arrived first. Within Hospital from suffocation.' Continued on page 34 PAGE331 71 TASH Newsletter, August 2000 91 1: HELPFUL OR HARMFUL?
911 Can Be Dangerous to Your mented. This taxpayer-financed service ing that continuing education for law Health must be applied even-handedly so people enforcement personnel must include with disabilities can receive its benefits. training to identify indicators of develop- Continued from page 33 mental disabilities and mental illness and Changing a system can be difficult, but it alternatives to deadly force when inter- services and activities that are not is possible. The Public Interest Law acting with people with developmental accessible with a plan for making them Center of Philadelphia (Law Center), a disabilities and mental illness. The Bill accessible.' national leader in effecting systemic was spearheaded by Craig A. Durfey, an change, emphasizes a three-pronged advocate, and introduced by Assembly Although 911 is a program, service or strategy: Compromise, Lobby for Legisla- Member Hertzberg. (See the sidebar on activity within the meaning of the ADA, tion and Litigate for Systemic Change. page 35 for highlights of AB 1718.) local governments, through their lack of Sometimes, it takes all three to get the compliance, have made this service job done. Litigating for Change inaccessible, by its inadequacy and, in On February 18, 1998, Ronald Parks of some cases, by its lack of responsiveness, Compromise Darby Borough, Pennsylvania was to people with disabilities. In Philadelphia, the University Affiliated awakened by a gran mal seizure. His Program at Temple University has family called 911. A police officer was In a consolidated action, three plaintiffs worked with the local police department the first to arrive. Despite the family's claimed that the Phoenix (Arizona) 911 to help change procedures and make 911 protestations that Mr. Parks was having a emergency system did not respond more accessible to people with disabili- seizure, the officer wrestled Mr. Parks to effectively, if at all, to their TDD calls. A ties. The UAP has worked with the the ground. The EMTs and more officers man with hearing loss wanted to report department's ADA coordinator to developarrived. The EMTs and the police two suspicious strangers outside his a premise history form that people with restrained and handcuffed Mr. Parks. home and used his TDD to call 911. On disabilities or family members can Ironically, the Epilepsy Foundation of four separate attempts, the dispatcher complete to alert the 911 dispatcher that Southeastern Pennsylvania had offered to disconnected his call. Help came too late the call is from the home of a person withconduct free training sessions for area to stop the prowlers from breaking into disabilities. The information is inserted police officers and EMTs to explain, his pickup truck and driving away. A into the 911 databases and the dispatcher among other things, that holding down a woman tried to use the TDD system to can advise EMTs and police that there is person in a seizure or post-seizure state is contact 911 because her father was a person with disabilities at the residence,like holding a drowning man's head seriously ill.It took three tries for a identify the disability and any necessary under water. No one from the Borough successful connection. Another Arizona accommodations. A prepared responder attended the sessions. man tried to use his TDD to call 911 is less likely to act irrationally than an because he had been burglarized. After unprepared responder. The Public Interest Law Center of five attempts, he still was unable to Philadelphia represents Mr. Parks in his connect. Officers arrived eventually.' Lobbying for Legislation action against the 911 responders Advocacy groups can learn from the because the case is an opportunity to 911 Can Be Made Accessible and Safe Religious Right: combine resources to change a system that is desperately in for People with Disabilities pressure for change and impact state and need of change. The Epilepsy Foundation A 911 call, even if for a medical emer- local governments. Applying these accepted the invitation to be a party to gency, frequently results in police officers strategies, the Law Center and 77 other the solution.9 In a partial settlement, the arriving before, with, or after the medical advocacy organizations in Pennsylvania State agency, one of the defendants, has team. When police officers and EMTs areformed the Coalition Advocating for included representatives from CADRE on not trained to recognize characteristics ofDisability Rights and Empowerment a Panel to develop a unit in the police disabilities, they misinterpret classic (CADRE). CADRE advocates for the training curriculum to prepare officers to behaviors of mental illness or develop- State's municipal police officers to receiverecognize behaviors of people with mental disability for criminal activity. training to recognize characteristics of disabilities and to rely more on common Police officers, by training, apply the use-specific disabilities and to respond sense and less on deadly force in their of-deadly-force continuum and think in appropriately. Twice, the House unani- interactions with people protected by the terms of subduing and restraining rather mously passed CADRE'S proposed bill, ADA. than observing, evaluating and then but the Senate's "Law and Justice" reacting. When a lack of training and Committee refused to move the bill out poor policies make 911 inaccessible to of committee and on to the floor. people with disabilities, the ADA requires that new training curricula, policies and On July 24, 2000, Governor Gray Davis procedures be developed and imple- of California signed Bill AB 1718 mandat- Continued on page 35 PAGE 341 7 2 TAM Newsletter, August 2000 911: HELPFUL OR HARMFUL?
911 Can Be Dangerous to Your mobilize their organizations to take on Health the challenge through the courts when California Requires Its Police necessary. Continued from page 34 Officers to Receive Training in Disability Awareness
Endnotes On July 24, 2000, Governor Gray Strong Advocacy Organizations Can ' 42 U.S.C. Subsec. 12101-12134, as imple- Davis signed Bill AB 1718. This Change Weak 911 Systems mented by regulation at 28 C.F.R. Part 35. law establishes training for California's When litigating for change, the Law police officers in disability awareness. Center seeks strong organizational Jardine v. City of Tempe, et al., CV-99-20660, AB 1718 requires that, on or before plaintiffs to join in the effort. Organiza- (Super. Ct. of Maricopa County, AZ 1999) June 30, 2001, California's Commis- sion on Peace Officer Standards and tions do not abandon a suit solely for a 3 Thompson, et al., v. Williamson County, et al., monetary settlement. Little wonder that Training establish and keep updated a 2000 WL 973414 (9th Cir. 2000). continuing education classroom defendants challenge the right of an training course relating to law organization to be a plaintiff. This 4 Washington, et al. v. City of Harrisburg, et al., enforcement's intervention with challenge can be defeated if the organiza- 95-CV-01437 (WD. Pa. 1995). persons with developmental disabilities tion meets the requirements set by the or mental illness, or both, as specified. courts: 1) its members would otherwise 5Stetter, et al. v. Village of Hanover Park, et al., 99 The course is to be developed in have a right to sue in their own right; 2) C 7084 (N.D. Ill., Eastern Division, 1999) consultation with community, local, the interests the organization seeks to and state organizations and agencies 6 Groman, et al. v. Township of Manalapan, et al., that have expertise in the area of protect are germane to its purpose; 3) the 47 E3d 628 (D.N.J. 1995). organization has a history of using its mental illness and developmental disability, and with appropriate resources to support this issue on other 28 C.F.R. Subsec. 35.105, 35.106, 35.107(a) consumer and family advocate groups. occasions; and, 4) neither the claim and 42.505. asserted nor the relief requested require The training courses must teach the participation of individual mem- 8 Ferguson, et al., v. City of Phoenix, et al., 157 officers all of the following: bers.10 F3d 668 (9th Cir. 1998). (1) The cause and nature of mental On August 28, 1999 and June 12, 2000, Parks, et al. v. Darby Borough, et al., 99-CV- illnesses and developmental disabili- 3810 (E.D. Pa. 1999). Brad McArthur, a 30-year-old man with ties. autism and mental retardation, was '° Herbert B. Newberg et al. Newberg on (2) How to identify indicators of beaten by Harrisburg police responding Class Actions Sec. 6.03 (3d ed. 1992) (citing mental illness and developmental to a 911 call about a prowler. Neighbors Hunt v. Washington State Apple Comm'n, disability and how to respond appro- tried to stop the beatings by telling the 432 U.S. 333 (1977)). priately in a variety of common officers that Brad had disabilities and that situations. he never harmed anyone or anything. The officers beat Brad about the face and (3) Conflict resolution and de- Barbara Ransom is a member of the TASH head. He was hospitalized for 5 days escalation techniques for potentially Executive Board and an attorney with the dangerous situations involving because the trauma to his head resulted Public Interest Law Center of Philadelphia in seizures. The ARC of Pennsylvania mentally ill and developmentally (PILCOP). Alvaro Madrid is a 2nd year law disabled persons. and the Autism Support and Advocacy student at Temple University School of Law Program are the organizational plaintiffs. and a summer intern at PILCOP (4) Appropriate language usage when They are intent on forcing the issue of interacting with mentally ill and police preparation and training through Comments concerning the information developmentally disabled persons. this case. contained in this article may be directed to Ms. Ransom at [email protected] (5) Alternatives to lethal force when 911 Must be Responsive to People interacting with potentially dangerous with Disabilities mentally ill and developmentally Local governments must ensure that their disabled persons. 911 services comply with the provisions (6) Community and state resources of the ADA. People with disabilities are available to serve those with mental hurt and killed by a 911 service that illness and developmental disabilities should be available for all even handedly. and how these resources can be best Advocates and Self-advocates must utilized by law enforcement to benefit ensure that other states follow the the mentally ill and developmentally example set by Governor Davis and the disabled community. California Assembly. Further, they must 173 PAGE 35 TASH Newsletter, August 2000 FIRST INTL. CONFERENCE ON SELF-DETERMINATION & INDIVIDUALIZED FUNDING
being planned or being put into action. + + While this is truly exciting, there is also the risk that the real aim -- citizenship for all -- will be forgotten, and that programs THE SEATTLE 2000 which claim to be individualized funding will really be no improvement on the DECLARATION ON systems which operate now With a view SELF-DETERMINATION to keeping these developments "on track," conference organizers developed a & INDIVIDUALIZED process to produce and disseminate a Declaration that will identify a set of FUNDING general principles which can shape how stakeholders across programs, groups, "Funding, Freedom and states and nations think about and Citizenship": The First implement these ideas. This conference has been founded on the International Conference certainty that people with disabilities With over 1200 people in attendance, it have the same rights as other citizens to on Self-Determination and seemed unlikely that all would agree on freedom, equality, equal protection under Individualized Funding the ideas for the Declaration without the law, and control over their own lives. some help. Three small groups were These rights must be honoured if people convened to work on the Declaration who have disabilities are to be fully Seattle, Washington, U.S.A. throughout the conference. These groups included as valued citizens in the July 29-31, 2000 were called Prospector Groups because, relationships and opportunities of like prospectors dipping sieves in streams community life. ver 1240 people, including as they mined for grains of gold, they were people with disabilities, family engaged in a process of searching for the Many people require personal supports members, community advocates, special grains of truth that needed to be or other services to ensure their full professionals,0 service providers, research- incorporated into the Declaration. They citizenship and inclusion. These sup- ers, administrators, and government did this by making presentations and ports and services must be funded and officials from 22 countries around the receiving feedback, attending others' provided at a level and in ways that world and all fifty of the United States sessions and listening, and seeking out uphold the rights of the individual. participated in this ground-breaking conference participants to get their views. event. Our heartfelt thanks go out to This conference is no less certain that members of the organizing group and Credit and commendations go to the these rights have often been disregarded. conference committee, and especially to following people who worked tirelessly Citizens who have disabilities experience Steve Dowson and Brian Salisbury who as prospectors: Laurie Powers, Jackie oppression in many aspects of their lives. co-chaired the program planning com- Downer, Michael Bleasdale, Michael The causes of oppression include poverty, mittee and put together an agenda that Bach, Chester Finn, Jackie Maniago, other people's attitudes, and the systems was diverse, incredibly motivating and Bruce Uditsky, Rocky Rothrock, Jane of publicly and privately funded support extremely informative. Tilley, Sue Swenson, David Martin, Alicia services, comprising: Contreras, Judi Chamberlin, Theresa * laws, policies and regulations; The conference was rich in opportunity Rankin, Jackie Golden, Phillip Ripper, * state and private sector funding bodies; and outcomes, with topics and speakers Roger Jones, and Tim Stainton. Thanks * agencies which provide services. broad enough to encourage participation also to David Towell, Facilitator; David from a range of disability areas including and Faye Wetherow, Graphics; and David These systems operate in ways that deny developmental disability, the indepen- Weins, Technical Support! control to those they are intended to dent living movement, seniors, and serve. Without accountability to those people involved in the mental health UTICOM. TO THE who require their assistance, these movement. FIRST INTERMIT! systems decide how, where and with SO/11 CONFLRENG whom people shall live and spend their The conference took place at an impor- days. While this situation persists, tant point in the broader disability people of many nations will not be able movement, as there is an increasing focus to exercise their rights or fully participate on the need to secure real citizenship in their communities. For these reasons, opportunities for people with disabilities. In support of this, many individualized funding programs are now operating, Continued on page 37 -.PAGE 36 1 7 4 TASK Newsletter, August 2000 POL104 DR741. saDMPIHIEME 013117-DE4EIManavocm OIANDOUTIDNUIDZED PURTDOM
"Funding, Freedonro and Citizen- 8. The many contributions made by which support self-determination. Such ship": Me HrsIt tint ernatkonall people with disabilities, which include systems will be characterised by innova- Conference on Se0f-Defteanuna- innovation, problem-solving, improve- tion, a focus on results, and employ ments in accessibility, and other contri- people with disabilities and their fami- Von and IniAuatize IFundOng butions to humanity, must be recognized. lies. Continued from page 36 Action required to support self- Individualized funding: Guiding determination principles this conference calls on policy makers in 9. People with disabilities speak from 17. Individualized funding arrangements all countries, at all levels of government, personal experience, and so with author- must allow for flexible practice within and on agencies which provide support, to ity and expertise. Their views should be consistent guiding principles. ensure that the assistance made available valued, and not regarded as having less to all citizens is based on the following importance than those of professionals. 18. Individualized funding and planning principles: systems must be flexible and responsive 10. People with disabilities and their to the culture, values and preferences of families must be present and central at alleach person and their family Self-determination: founding principles planning and decision-making tables in policy development. 19. People must not be required to give 1. Self-determination for people with up their right to acquire income and disabilities must be the founding prin- 11. Citizens with disabilities and their personal assets in order to access public ciple of public policy. supporting networks and organizations funding for disability supports. must be in charge of developing and 2. Legislation to promote self-determina- promoting public policy which is related 20. There must be universal access to tion or individualized funding must be to the provision of supports. funding and support, within a range of grounded in the principles of human individual need which must be defined rights and social justice. 12. Policy must be designed and imple- through a collaborative process. mented to ensure the inclusion of people 3. Self-determination is a birthright who are at the risk of exclusion or 21. Individual funding systems must which must be upheld by government. It disadvantage on the basis of ethnicity, include arrangements to provide assis- is not a commodity to be delivered by culture, gender, race, religion, sexual tance, where required, in the manage- services. orientation or other grounds. ment of funding and supports, and not limit eligibility on the basis of judge- 4. All people, including individuals with 13. Negative, entrenched attitudes, both ments of 'capacity' disabilities, have rights and responsibili- within and beyond services for citizens ties to live as full citizens. The barriers with disabilities, must be addressed. 22. The design of individualized funding that stand in the way must be eliminated. systems must reflect the reasonable 14. An understanding of disability as a assumption that recipients are trustwor- 5. The development and implementation consequence of society's organisation and thy. of policy must take account of the other people's attitudes (the 'social interdependence of the individual; others model') rather than the inevitable result 23. Individualized funding must be with disabilities; the community; and of the individual's impairment (the recognized as a means to honor people's government. `medical model') must be promoted. vision for the future.
6. Policy and practice must acknowledge 15. Other citizens must be encouraged 24. Individualized funding must be and honor risk-taking as an essential and educated to recognize that people recognized for its value as an investment element of self-determination and an with disabilities are entitled to access, in people and communities. important part of life. accommodation and supports; and that individualized funding is the best way to Individualized funding: Principles for 7. Demands that individual self-determi- target supports that meet peoples' needs. implementation nation should only be allowed when certain standards are met must be 16. Governments must require that 25. The funding allocated to each person rejected. public funding is used to create systems should be based on their individual need, not on pre-defined and arbitrary limits.
Continued on page 38 PAGE 3 7 TASK Newsletter, August 2000 170204 aDIMPEGIIIME OM 0130-DEVERMORM400A7 OKIDDWODULMOZEID PMED011\7©
"Funding, Freedom and Clittozen- Individualized funding: Evaluation shrp":The Ftirst OnttenatOona0 34. When the success of Individualized Conference on Se0f-Detterndna- Funding is assessed, the evaluation must ttkon and OnavodanallOzed Funding take due account of the improvements in Continued from page 37 quality of life, and in particular the extent to which personal choice, control I and sense of belonging are enhanced. 26. Individuals must be free to pay the providers of their choice, including 35. When proposed or implemented family members. individualized funding systems are compared with block-funded services, it 27. Individuals must have full control must be recognized that block-funded over their supports, including the services have not been generally success- planning of supports, and choosing and ful, either in terms of the efficient use of directing their support providers. Many thanks to the following supporting public funds, or in the quality of life and sponsoring organizations that provided to the people who received the 28. People must have a choice of budget- assisted over 70 family members and services. ary and administrative support services people with disabilities from all over the to assist them in using and tracking their world to participate in this conference: individualized funding.
29. People must be given the opportunity Here are some of the things attendees FOUNDING ORGANIZATIONS: and support to explore options and make liked the most about the conference: their own choices of sources for forms of O TASH Disability Advocacy World- assistance such as brokerage, advocacy, 0The people, the presenters, planners wide and peer support. and participants from all over the world oBritish Columbia Coalition for. here to talk about and further work and a People with Disabilities - CANADA 30. Service providers and agencies must common value! Incredible O Administration on Developmental be encouraged to endorse and apply the 0Listening to different accents in Disability - USA principles of self-determination and sessions! O Canadian Association for Commu- individualized funding; and, in an 0The evening of theatre! nity Living - CANADA expanded organizational role, to deliver 0Cross-Disability reference O The Arc of the United States -USA supports that minimize dependency and 0The creation of the Declaration O American Association on Mental strengthen partnerships with the larger 0Flexibility in making it work (ie: Retardation - USA community to address barriers to opening airwalls, moving chairs and oNational Program Office on Self- freedom and opportunity. rooms) Determination A Robert Wood Johnson 0Meeting and getting to know self- Foundation Program USA 31. Individualized funding systems, advocates from around the world O Self Advocates Becoming Empow- support services, and technical assistance 0Talk of the town- hearing personal ered - USA services must be designed and provided stories was the best part- we need to oInter-American Institute on Disabil- so as to ensure that their forms of listen more to self-advocates! ity- USA communication, physical and environ- 0Good international representation mental characteristics, and overall 0Excellent workshops and informa- Sponsoring Organizations: quality do not undermine their accessi- tion bility. OGlendale Foundation for Research A final report of the conference proceed- and Community Support - USA 32. Individualized funding arrangements ings will be available and sent to all O The Center on Human Policy - USA must be straightforward and easily registrants of the conference about two O British Columbia Paraplegic Associa- understood by everyone. months following the conference. Check tion CANADA the website http://members.home.net/ O British Columbia Association for 33. Action must be taken to encourage directfunding/ for more updates and to Community Living - CANADA the recruitment and employment of see pictures presented as part of a O The Presidential Task Force on people with disabilities in the administra- fantastic finale by P Sue Kullen from Employment of Adults with Disabilities - tion of individualized funding systems. Baltimore, Maryland. Washington, DC- USA
1 7 6 Continued on page 39 PAGE 38 TASH Newsletter, August 2000 gOL3OU MFR. la:AIM:113MR ©RI 01311.17.4)1341312MORIMICDRI flaDINGDIgaIGZED 131MD0E9e
"Fundung, Freedom and Cuttozen- O Washington Initiative on Supported As Marsha grew ill, she and I began a series of shilp": The nrst Ontternaltdonall Employment Washington State, USA letters to one another about life and death. O One of the issues that was left unresolved Conference on Se0f-DetteruMna- Greater Vancouver Community Services SocietyBritish Columbia, came from those days of fiery rhetoric and gm and andivOdualltued Fondling CANADA battles fought. She had come through, not Continued from page 38 unscathed as I had thought. In my mind it O Speaking for Ourselves USA as impossible to think of Marsha's spirit O Values Into Action ENGLAND made of anything but the hardest steel. I was O Central England People First wrong. She fought the good fight but was left ENGLAND wounded. She knew that some people could O Community Living Journal only see her as the angry woman with a cause. ENGLAND The uncompromising rebel. The Inclusion O Lifeworks ServicesMinnesota, Witch. USA O The National Parent Network on One conversation that we had, told me of a Disabilities USA pain that she carried with her. "Why won't people let you grow?" she asked me one day. O Inclusion International - FRANCE "Why do they insist on putting you in a box O Kirinari Community Services and thinking that you don't develop, change, AUSTRALIA mature?" She knew at an instinctive level that O Elizabeth M. Boggs Center on there were those whose opposition to Developmental Disabilities The Univer- her and her belief that ALL MEANS ALL sity Affiliated Program of New Jersey, called her both a caustic and vitriolic woman. °World Institute on DisabilityCalifor- Robert Wood Johnson Medical School / "Men are called passionate, women are called nia -USA University of Medicine and Dentistry of names," she said to me while discussing this issue. OThe Alliance for Self-Determination- New Jersey USA Oregon USA O Justice for ALL Washington, D.C., But people had slowly begun to realize that USA Marsha led a fight that needed a Warrior Supporting Organizations: O Maryland Association of Community Princess. And she was that warrior. Only a Services USA week before she died, Marsha and Jack
O CARE . . The Rehabilitation Accredi- attended the Ontario Association for Commu- tation Commission-USA nity Living award dinner. At that dinner they O Langley Association for Community received a lifetime achievement award. There LivingBritish Columbia, CANADA they were surrounded by Ontario the movement. There they found themselves O Community Living SocietyBritish loved, admired and honoured. Marsha Columbia, CANADA confided in me the day after the award that O VELA Microboard Association the statue was beautiful, but British Columbia, CANADA that the sentiment it represented was healing O MSA Society for Community Living for her. It was as if the entire movement in the British Columbia, CANADA room that day had layed their hands on O People First of Washington Marsha's spirit and wished it well on its Washington State, USA journey into the future. Her spirit soared even O Planned Lifetime Advocacy Network as her body failed. She had been blessed to British Columbia, CANADA have had a vision. To have led a movement. To O The Arc of Washington State have taken her place in history -- an immortal whose name will never be forgotten. A week Washington State, USA later she had died. Peacefully. Knowing full well that we had caught up with her and had understood her passion. She had always included us, but now we had included her. She had fought valiantly and had died gently.
RenteMdenaf 716vata Safelenotaa 7oleAt Marsha Forest believed. And because she did a little child with Down Syndrome boards a Acme 15, 1942puee 2, 2000 bus to go to school. Part of the crowd. Part of Continued from page 32 the school. Part of real life. Rest well Marsha Forest. You've earned rest. Be well, Jack-- our hearts are with you. were, and will always remain in my mind, a couple. 177 PAGE 39 TAM Newsletter, August 2000 TASHNEWSLETTER
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board Kathy Boundy, Ex-Officio diversity and quality of life for children and adults with disabilities. Liz Healey, President Bob Kafka Items in this Newsletter do not necessarily reflect attitudes held by individual Donna Gilles, Vice President Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Debra Kunz torial judgement in selection of materials. Doug Biklen, Chair, Executive Committee All contributors and advertisers are asked to abide by the TASH policy on the Jorge Pineda, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Joe Wykowski, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Jacki Anderson Barbara Ransom Terms such as "people with mental retardation," "children with autism," and "in- Michael Auberger Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Jacqueline Thousand ment for a product or service does not imply TASH endorsement. Linda Bambara, Ex-Officio Wanda Blanchett
LMODIADNI1011)INFORMATION
Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: Is the above your work address home address other
Please Check Appropriate Categories ( ) Educator/Teacher (K-12) ( ) Related Services Provider (not more than three): ( ) Government Personnel ( ) Self-Advocate () Administrator/Adult Services () Legal Services Provider () Social Worker () Administrator/Education () Occupational/Physical Therapist () Speech/Language Pathologist () Administrator/Other () Parent/Family Member ( ) Special Education Teacher/Support () Adult Service Provider/Staff () Personal Assistant Specialist ( ) Advocate/Friend ( ) Professional/Public Policy Advocate () Staff Development/Trainer ( ) Behavioral Specialist ( ) Professor/Instructor-College/University () Student ( ) Case Manager ( ) Psychologist ( ) Supported Employment ( ) Early Childhood Services ( ) Regular Education Teacher/Administrator () Other
Moving? Please notify TASH of your new address. General Membership (individual) $103*. () Mastercard() Visa() Discover Organization/Subscription (all organizations, schools, libraries, Card Number Expiration Date universities, etc. must use this category) $230*. Associate Membership (for people having an annual household Signature income of $25,000 or less, and for whom payment of the full () I would like to spread my payments out.Enclose 1/3 and you will fee would present a financial hardship) $60*. receive 2 additional invoices at monthly intervals. Lifetime Member $1000. Add $10 for postage costs for members in Canada and $25 for members outside the U.S. and Canada. Please make check payable to: TASH Group Discount Rate (When three or more individuals from the same Address: 29 W. Susquehanna Avenue, Suite 210 organization join as International/Chapter or International Only Baltimore, MD 21204 members at the same time -- Save $20 per membership!) Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank. *These prices are for both International and Chapter memberships. For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column: 8274,
URGENT! NON-PROFIT ORG. Dated Material Inside! 29 West Susquehanna Avenue U.S. POSTAGE 2000 TASH Executive paid Suite 210 Board Election Ballot! HAGERSTOWN, MD Baltimore, MD 21204 PERMIT# 187 Phone: 410/828-8274, FAX: 410/828-6706, TDD: 410/828-1306 Web site: www.tash.org
Address Service Requested 178 AUGUST 2000 PRINTED IN THE U.S.A. c------1 k
J ).1 VOLUME gegig NUMBER SEPTEMBER 2000
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SI, e0 cilia= es calluraso, per© es fa Congerencia d1e TASH 00 que verdoderomenge esgord /pooilaeuid© Yes, the cllimage is all ü©© vivo 0®$ cos as en Miami Beach warm, bug fig's ghe esge 011egembrell Plloneo osfisgfiri ll© TAM Conference ghog 'Wall reallly ingernacianallmenge reconcodda Congerencia TASK "Avanzando hadaENDfuguro sin borreros" L e heogfing ghfings u112 MOND§Beach thus December! Es la estructura de diversidad e inclusion que se ha llevado a cabo a traves del apoyo de grupos y personas de grupos diversos, por lo que la Pllon 17© loin Us for ghe ingernagionany Conferencia de TASH es reconocida por ser una convivencia de personas recogingzed TASH Congerence, apasionadas de los derechos de las personas con discapacidad. Los miembros de TASH, en colaboraci6n con sus familias, amigos, y colegas, "Rovfing ghe Edge." alrededor del mundo han venido cimentando la manera y han ido mas alla de las fronteras de lo que es considerado "la Unica opciOn positiva y The fabric of diversity and inclusion is made up of autentica" en cuanto al apoyo a personas con discapacidad para que vivan many threads, and the TASH Conference is known for su vida de la forma que ellos lo deseen y escojan durante mas de 25 atios. being a well-woven gathering of people who are Este folleto esta disponible en espanol. Para mayor informaciOn, por favor passionate about the rights of every individual with a llame al 1-800-482-TASH o escribanos a [email protected]. disability. TASH members, in collaboration with their families, friends, and colleagues around the world have been paving the way and stretching the bound- 2000 TASH CONFERENCE aries for what is considered "the cutting-edge" in The Fontainebleau Hilton supporting people with disabilities to live the lives of their choice for over 25 years. Miami Beach, Florida o December 6-9, 2000 Uticuol] Dnocemuzia3 This silver anniversary conference will feature ways to ATC MEETING PACKAGE INCLUDES: AIRLINE DISCOUNTS up to 15% off the move that edge even further, with 14 full-day pre- lowest available fares* conference events, 38 topic specific breakout strands CAR DISCOUNTS: special convention ratesask your agent covering the full spectrum of issues affecting people ZONE FARES region-to-region flat rates with disabilities and their families, over 80 exhibits, a CONSOLIDATOR AND NET FARES reducing the cost of high price tickets networking luncheon, and new this yearan exclu- TRIP MANAGER: on-line reservation system sive poster session featuring poster presentations from POWER PRICING: computer software search for the best fare around the world! on all airlines RESFAX: fax back service with 36 options and prices for your requested travel times For the second year in a row, Miami Beach has been ATC EXTRAS: named the Top Urban Beach. Bring the entire family Advanced seat assignments Website that includes on-line reservations, maps, city and to the conference, and enjoy this world-renowned travel links resort location! Special meal requests Frequent flyer mileage updates Personal Profiles for repeat and TRIP MANAGER customers
ASSOCIATION TRAVEL CONCEPTS Phone 800 458 9383 Fax 858 589 3988 O [email protected]
o American 800. 221-2255 6000U1 Alamo 800-732-3232 643284GR Avis 800-331-1600 J952872
Discounts apply 1211/00-12/12100
Tickets purchased at least 60 days prior to departure receive 10% off coach and 15% off last loss. Tickets purchased less than 60 days prior to departure receive 5% off coach and 10% off first class. HavWEBSITEWM. aS s ntravel.
r3kGE 2 TAM agewsietier, September 2000 n GENERAL ONFORMATOON
After a long day in exhilarating meetings, attendees can relax and network in the resort's tropical OEMELMI ERW:AULTEM paradise. Miami Beach beckons with its perfect year round climate, beautiful ocean, sand, and endless sun. All conference related activities take place at the headquarter hotel, The Fontainebleau Hilton Resort and Towers.
4441 Collins Avenue, 1___,,,,yora6ipleummummutmu.7,rwwup,-rN4,4 Miami Beach FL 33140 narrumunrinnapmmtIvermwrr-tmrnsr.711,,,,,, nraTurransmontmenTIvrpqr.r.---17,1r-vr--Er-710 = - , Telephone 1-305-538-2000 arramptivemomrTmnewevpre,,,plIwim,,,,,,, Reservations1-800-548-8886 www.hilton.corn
Approved 2000 Conference Rates at the Fontainebleau Hilton Be sure to mention that you are making reservations for the TASH Conference to take advantage of these reduced rates. *,, 00S, ,
Single Room $140.00 00 Double Room$160.00 9 " Additional Person $20.00 Gb rt
The Hilton Family Plan allows tions when traveling from the airport to receipt of your registration. All materials children, regardless of age, to stay at no the Fontainebleau Hilton. Simply proceed will be provided when you arrive at the charge, when they occupy the same to the lower level and see a SuperShuttle registration area at the conference site. rooms as their parents. Families who Customer Service Representative at the Please note the date and times for include more than 4 people can request a Van Service Kiosk. SuperShuttle has 11 conference registration on the tentative roll away bed in the room for an addi- vans that operate, 3 of which are acces- agenda, page 5 of this newsletter. tional person when they check-in, or they sible to wheelchairs. The cost is $11.50 can request a suite, at 20% discount for per passenger, each way. For specific Childcare/Youth Activities the TASH Conference. information contact 1-800-262-5501 or This year there are a variety of pro- Please be advised that this does not in- 305-871-2000. grams available at the conference for kids! clude current room tax, which is 12.5%. The For a listing of services for accessible TASH will be operating the highly success- block of rooms held for the TASH Confer- transportation in Miami, personal assistant ful and fun childcare program for children ence is being held until November 6, 2000. services, and medical equipment rental in- ages 1 month13 years in cooperation with When the block is full, or after November formation, please call TASH at 1- 800 -482- KiddieCorp as we have done in years past. eh, rooms will be available if space permits. 8274 or check the website at www.tash.org The charge is $2.00 per hour per child, and Check-in at the hotel is 3:00 PM on there is a 3 hour minimum block. Pre-reg- the day of your arrival. Please make your Area information istration is required. If you are interested reservations early to ensure a room! To obtain a brochure of Miami, in information about this program, please contact the Greater Miami Convention check the box on the registration form or Airline Travel and Visitors Bureau 888-766-4264 or call 1-800-482-8274. See Advertisement on page 2 www.tropicoolmiami.com In addition, the Fontainebleau has an extensive Resort Activities Program for chil- Airport Shuttle Conference Registration dren ages 5-12 and teens 13-17, who are Super Shuttle is the largest airport To avoid delays and to ensure a able to swim without the assistance of a flo- ground transportation system in the smooth registration, please fill out the tation device. Rates vary with activities. For United States, and is the preferred vendor form completely. Registration is also more information contact the Kid's Corner from the airport to the Fontainebleau. available over the Internet at at the Hilton , (305)538-2000 x 3445. Super Shuttle operates 24 hours a day, www.tash.org. A confirmation letter will and it is not necessary to make reserva- be sent approximately two weeks after r' PAGE 31 8 1 TASP-0 Flewslletter, September 2000 FROM 4C-DE EXECUTOVE DORECTOR
TABLE CONTENTS ginning to seem as if it will never end, join new and old colleagues and friends from across the country and around the world at what is General Information Page 3 indisputably the most exciting disability con- ference offered. Whether this will be the most From the Executive Director Page 4 recent of many compelling TASH conference experiences or your first opportunity to at- Tentative Agenda Page 5 tend, we guarantee you will leave renewed, excited, and armed with new ideas for effec- Keynotes Page 6 tive advocacy and progressive supports.
Pre-Conference Page 7 lpocim Noe galecuiliiwe IDOveagov TASH's mission statement begins with the BY NANCY WEISS In Focus Strands Page 10 statement, "Stretching the boundaries of hatdo you think of when you what is possible...". This year's conference Sessions by Topic Page 14 think of the annual TASH them takes this idea a step further. "Moving conference? Inspirational the Edge" implies that it is no longer Exhibit Information Page 20 sessions? Great networking opportunities? enough to be on the cutting edge. Tash is A chance to meet people from all over the committed to consistently looking ahead Registration Page 37 world who agree that children and adults and setting a brisk pace toward assuring with disabilities have a right to participate full and meaningful lives for all people fully in all aspects of life? What about with disabilities and their families. beach umbrellas, a long walk along one of TASH (formerly The Association for Per- the most beautiful shorelines in the This conference edition of the Newsletter is sons with Severe Handicaps) is an inter- United States and great tropical nightlife?? meant to wet your appetite and give you a national advocacy association of people taste of what the conference in Miami will have with disabilities, their family members, This year's conference in Miami offers the best to offer. This year marks TASH's Silver Anni- other advocates and people who work of the stimulating opportunities we have come versary. Come celebrate twenty-five years of in the disability field. TASH actively pro- to expectofTASH conferences, along with a change and a future of progress as we con- motes the full inclusion and participa- heaping helping of the new, unique and ex- tinue to move toward a society hallmarked by tion of persons with disabilities in all citing. This year, just when the winter is be- diversity, opportunity and justice for all. aspects of life.To receive an informa- tion packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Balti- more, MD 21204 or phone (410) 828- 8274, ext. 8 or e-mail: [email protected]. When De D Cgemik:ioDTT For issues of policy, chapter or committee support, or M0000Cal 04&413ZIER74 general 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, 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 2000 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 For questions about membership, conference registration or exhibiting, call: segregated and everyone belongs; Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, newsletter submissions and advertising, or publication sales, call: Priscilla Eradicating injustices and inequities; Newton, Director of Marketing and Communications, at (410) 828-TASH, Ext. Supporting research and disseminating 102, e-mail:[email protected] knowledge and information; For information on the Journal (DASH), 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; The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format. Requests for permission to reprint material appearing in the TASH 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 Promoting excellence in services. e-mail to: [email protected]. TAM agewsieffer, September 2000 SEPTEMBER 2000
Corferenceleatures VEKIT:TOWE (g@IMPELIEME ¶®v spelce up....mad DOsgemen Tuesday, December 5th The conference planning committee has made some exciting changes for this 7:00 PM 9:00 PM year's conference. In response to the feedback received on the conference evalua- tion forms, TASH will be reducing the overall number of breakout sessions to Wednesday, Decenober 6th offer a more "manageable" day of choices. The review board will be working 7:00 - 10:00 AM Registration Open harder than ever to select proposals that offer the best quality presentations 9:30 AM - 4:00 PM TASH Techs representing the greatest variety of interest areas. This year, you can expect to see 3:00 - 7:00 PM Registration Open the same great quality and variety but much less repetition. 5:00 PM 7:00 PM Opening Reception This year the conference includes two meals. On Thursday, the conference agenda has a scheduled lunch break so that for only $10.00 extra, all presenters Thursday, December 7th and attendees can attend a luncheon amidst the palm trees on the Grand Lawn. 7:00 AM 10:00 AM Exhibitor set up This special luncheon features roundtable discussions in a variety of topic areas. 7:002:00 PM Registration Open This event provides a great opportunity to discuss issues of interest with other 8:30 - 10:00 Opening Plenary TASH members as you enjoy your lunch with a lovely view of the beach, boardwalk 10:00 - 12:45 Exhibits open and pool. 10:30 - 12:45 Sessions In addition, on Saturday during the exclusive exhibit and poster time, continen- 1:002:15 Roundtable /Box Lunch tal breakfast will be served. And, be sure to attend the Gala Reception/Silent Auction on the Grand Lawn on Friday evening, as light fare will be featured, along with a cash bar. 2:155:45 Sessions The following topic areas will be listed as "strands" within the conference 2:00 - 6:30 Exhibits Open program. A strand is a series of sessions in a particular topic area, which have a similar focus, and which feature cutting-edge information and ideas. All sessions in Friday, December 8th a strand are scheduled in the same room. Strand descriptions can be found starting 7:00 - 12:00 Registration open on page 10 of this Newsletter. 2000 Conference Strand topics include: 8:00 - 10:15 Sessions 10:00 - 7:00 Exhibits Open Advocacy Urban Issues 10:30 - 12:00 General Session Autism Whole School Change 12:15 - 5:00 Sessions Aging Leisure and Recreation 5:00 - 7:00 Gala 25th Anniversary Assisted Suicide Literacy Reception w/ Silent Auction in Community Living Multicultural Exhibit Hall Criminal Justice Paraeducator/Paraprofessional Early Childhood Personnel Preparation (includes Distance Saturday, December 9th Employment Education and Higher Education) 7:30 -10:30 AM Exhibits Family Positive Approaches 7:30 -10:00 AM Posters Governmental Affairs Related Services w/Continental Breakfast Guardianship Alternatives Research 10:301:15 - Exhibit Hall Breakdown Inclusive Education Strands Self-Determination 10:00 - 1:30 Breakout sessions Alternate Assessment Sexuality Best Practices Spirituality/Peace University/College Special Health Care Needs Your registration includes: Communication Support Students Who Severely Challenge the All conference sessions, events and & Curriculum Design Schools but who do not have labels of discussion groups High School Inclusion "Severe Disabilities" Official Conference Programto be distrib- International Inclusion Teacher Preparation uted on-site with your registration materials Literacy Transition Admission to the Opening Reception on Standards Based Reform & Assessment Wednesday, December 6th from 5:00 7:00 PM Admission to the Exhibit Hall Additional sessions in the above mentioned topic areas may be scheduled at The opportunity to attend the networking other times outside of the strand. There will be many more topics featured as well, Box Lunch on the Grand Lawn, Thursday, such as management, creative and performing arts, communication, assistive Dec. 7th 1:00-2:15 PM for only $10.00 technology and much more! Admission to the Gala Reception and Silent You will not find another conference on disability issues that has the breadth and Auction on Friday, December 8th 5:00-7:00 PM depth of topic areas, and the incredible melding of perspectives. Plan to join us! Continental Breakfast while browsing the exhibits and poster sessions on Saturday, December 9th 7:30-10:30 AM PAGE 5 S 3 TASH Mewsletter, September 2000 GENERAL SL SSOON
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I / Pat Mirenda Dr. Oscar Arias
`The Tiles Won't Stick Without the Grout' TASH is privileged to welcome Nobel Peace laureate, Dr. This keynote will employ the image of a mosaic to Oscar Arias, to join us in Miami as one of our keynote examine the changes that have occurred over the past 20 speakers at the annual conference. Dr. Arias is a years with regard to the places in which people labeled visionary leader in the international community with severe disabilities live, work, play, and go to school. promoting the organizational values reflected in the As the "tiles" of the mosaic change from segregated to TASH Resolution on Peace. Dr. Arias is also one of the community settings, the role of the "grout" that holds primary authors of the Nobel Peace laureates' Interna- them in place is often misunderstood or overlooked. In tional Code of Conduct on Arms Transfers. particular, the roles of augmentative communication, literacy, and positive behaviour supports as key elements Dr. Arias' keynote will provide guidance to our member- of the "grout" that is essential to the integrity of the mosaic ship as he responds to our newly adopted Resolution on will be explored in detail. Pat is an Associate Professor in Peace and highlights the work ahead for TASH. To the Department of Educational and Counseling Psychol- quote further from Dr. Arias: "world leaders must make ogy and Special Education at the University of British human security the priority for the 21st century. In contrast Columbia. Prior to this, she was the Director of Research to the traditional concept of security linked to military and Training for four years with CBI Consultants, a group capacity and economic power, human security represents the that provides training and support for people with severe degree to which human beings are protected from ignorance, communication and/or behaviour challenges. Dr. sickness, hunger, neglect and persecution. Until the demands Mirenda lectures widely and teaches university courses for human security are met, discord will continue to boil in all about inclusive education, augmentative communication, regions of the world, periodically escalating into violent autism, and supporting students with problem behaviour confrontations." in schools.Her current research includes studies in the areas of positive school-wide discipline practices, com- iso featured at this session: puter technology for students with autism, and interven- A Special Tribute to Marsha Forest. Though Marsha's tions for young children with autism spectrum disorders. spirit has moved on, she continues to lead us all on the journey to inclusive living. iso featured at this session: Contributions by Liz Obermayer, who will speak 0 A presentation by Dohn Hoyle and Joanne to the role individuals with disabilities have McKeown on Civil Rights, Self-Determination, and played in the current progress and the future Decision-Making vs. Guardianship direction of TASH. 0 2000 TASH Awards 0 Presentation of "The Key to the City" by Mayor Neisen 0. Kasdire, City of Miami Beach
PAGE 6 1 S 4 TASH Wewsleiter, September 2000 TASH TECHS
TWIE e-Collge_onceIFfiE IDay Wednesday, December 6, 2000 The Fontainebleau Hilton, Miami Beach, Florida 9:30 AM - 4:00 PM
Plan to arrive in time to attend one of the T-3 Civil Rights, Self- that relate both to the general education highly informative and practical pre- Determination and Decision curriculum and their priority learning conference workshops. TASH TECH Making vs. Guardianship objectives; and to design instructional workshops are interactive, and contain Dohn Hoyle, Sally Burton-Hoyle, Kathleen supports that illustrate how students can information that will redefine the edge in Harris, Torn Nerney, Mayer Shevin be supported in the classroom. "cutting-edge" strategies for supporting Stripping people of their rights by people with disabilities to live, work, and establishing guardianship is altogether too 1-6 Developing Augmentative play as meaningful members of their home common. This workshop will focus on Communication to Support communities. Be sure to choose early, as alternatives and best practices for support- Participation in General sessions do fill up quickly! Rates are listed ing people at risk, including individuals Education Classrooms on page 2 of the registration form. with the most significant decision-making Michael McSheehan, Rae Sonnenmeier support needs. Discussion will include: A thoughtful process is needed to ensure how guardianship increased the risk for that a stabilized augmentative communi- T-1 Movin On: Movement persons who are the most vulnerable, cation system is not a prerequisite to Differences and Behaviors That supporting choice and self-determination being included. The phases of developing Challenge Us rather than substitute or "second party a system, technology features, and Anne Donnellan, Martha Leary "best interest" decision-making, as well as message selection to increase curricular Building on the Keynote Presentation at best practice in keeping with TASH values. and social participation will be presented the 1999 TASH Conference in Chicago, This session is designed for family through discussion, interactive problem this session will present movement members, attorneys, care management, solving, technology exploration, and differences, the reported and observed agency staff, and long term advocates who personal stories. experiences in sensory, motor, thinking believe in the principles of freedom and and emotional differences. The contribu- self-determination. 1-7 Collaborative Teamwork for tion of these differences to challenging Inclusive Education: Integrating behaviors, communication, and learning 1-4 Mind Play: Tools for Therapy and Educational difficulties will be addressed. A frame- Creativity Services work for personalized support, including John Irvin Beverly Rainforth accommodations will be discussed. "Mind Play: Tools for Creativity" is an Legal, philosophical, and research interactive workshop that presents foundations will be established for related 1-2 Love, Sex, and Relationships: creativity as a holistic skill that can be services to have more active roles in The Journey to Joy for People learned and developed. Creativity is more inclusive education teams. Strategies will with Developmental Disabilities that just a way of thinking. It is inclusive be presented for transdisciplinary David Hi ngsburge r of how we think, act, and speak to one teamwork, including models of co- In this session participants will discuss another and ourselves.It is the skill of teaching and integrated therapy, alterna- the components of healthy sexuality as allowing oneself the freedom to create. tives to traditional roles and schedules, they apply to people with disabilities. This workshop brings to every partici- and frameworks for decision-making. The skills and abilities that people with pant creative techniques and theory that All will be discussed in the context of disabilities need in order to live well in each one can begin to use immediately to inclusive education. their bodies and in their relationships will be more creative in everyday life. be explored. The afternoon session will T -8 Designing and Implementing be a fast and fun look at the Facts and 1-5 Linking General Education Inclusive Curriculum: Teaching Myths of sexuality for people with Standards, (EP'sand Inclusive Community and Standards developmental disabilities. The presenter Classroom Instruction Mara Sapon Shevin, Mary Fisher, Paula Kluth, will use sexual language and sexual Cheryl M. Jorgensen Lucille Zeph humor. Warning: This is not a Value Free Participants in this TASH Tech will work This interactive workshop will address Workshop. The presenter will discuss the together in small groups to identify the strategies for designing and implementing roles of values and morals within the critical function of general education inclusive curriculum for heterogeneous framework to sexuality education and standards and the essential elements of training. the curriculum; to write IEP objectives Continued on page 8
PAGE 7 1 LC:, 5 MUM Rgewsletter,September 2000 1A500 TI CHS
outbreath. One cannot exist without the rINS 'El Pre-Conference, Support, Self-Determination, and other in healthy beings or communities. Disability" Developed by families, this Nil- Jay Workslops Using this summer 's installation of a Code curriculum considers supports effective if Continued from page 7 Plus Play Structure at The Ability Center of they enable people to build and exercise Greater Toledo, the co-presenters will dis- control over their own lives. Participants learners. Ways of incorporating state cuss the synergy, vision, planning and will consider such topics as the difference standards and IEP objectives within rich, implementation that goes into providing between family-centered and person- cooperative, multi-level curriculum will thoughtful and inclusive opportunities for centered planning and when each is be explored and experienced by work- all members of the community. appropriate; understanding the family as shop participants. a system; building interdependence and 7-12 Family Support, Self- reciprocity; redefining professional roles; 7-9 international Onciusion Update Determination and Disability analyzing the role that power and control Anne Smith, Roberto Leal, Zuhy Saheed, Susan Yuan, Shelley Dumas, Phil Smith play in building family confidence and Diane Richter Sample exercises from Philosophy and competence; and building culturally An overview and update of some of the Cultural Competence Modules of the responsive family support. activities and vehicles for advocates for nationally offered curriculum: "Family inclusion in the international arena will be presented. Background information and status reports about several interna- tional inclusion products, activities, networks and organizations will be discussed, including: UN Declaration of Rights of the Child; The Declaration of L\m CDEDEDOFOOMMy geDi Managua- How leadership by families of people with disabilities, in cooperation 010'pg0P IOCJC:10120 0 In_.07OPI1,3 with governments and professionals established an agenda for action; ac d:P:C32 OOP 01Q [kfLUDDIOg UNESCO Activities in Light of the Salamanca Statement and Framework for In addition to the TASH Techs that are being held on Wednesday, Action; The 6th International Congress on December 6th, TASH is holding the Annual Chapter Leadership Serving Children And Youth in Inclusive Day An opportunity for chapter officers and representatives to Schools; and much, much more. This share ideas, concerns and strategies. interactive and exciting day is not to be missed. Come prepared to share your experiences and expertise!! This event has been held on the Wednesday before the conference, in one form or another, for the past five years and has been critical 1 -1® Multiple inteingences in in strengthening relationships between the International TASH inclusive Classrooms Robin Smith, Laurel Garrick Duhaney Board, Central Office and Chapter Leaders. The day includes This session will emphasize the use of opportunities for skill building, informal sharing of ideas and multiple intelligences to enhance aca- planning for the future. The Chapter Leadership Day has helped demic and social engagement and new chapters to identify directions for themselves and has assisted establish a competence-oriented learning established chapters to influence policy and direction within their community. Participants will experience music, body sculpture, and kinesthetic states. Whether you represent a thriving, a newly established, or a games to support academics in inclusive struggling chapter, the 2000 Chapter Leadership Day is an event classrooms along with other approaches you won't want to miss! that support "whole brain" or "brain compatible" learning. Applications at all All current Chapter officers will receive invitations to this exciting grade levels will be discussed. Partici- pants are encouraged to bring examples day of planning and collaboration. If you are interested in starting a pertinent to students in their school. chapter and would like to participate in the 2000 Chapter Leader- ship Day on December 6th, call Nancy Weiss at 410-828-8274, ext. 7-11 Zen and the Antainclusive 101 or e-mail: [email protected] Recreation Design Dan Wilkins, Cynthia Burkhour If work and contribution are the inbreath, then leisure and recreation are the
PAGE 8 1 4 6 1AS511-0 ews Ilene* September 2000 SPECOAL SY POSDUM
Special' Pire-ConfeErence Symposkom Co-SpoErnsoirera by NADD
11110W 1r0 ADVOCATE [FOR EIFIFECTIIVE AND R[ESPECTIFUE MENTAL. HIEALTH SERVIICES [FOR PEOPLE WITH DEVELOPMENTAL DlISABIIL111TIIES -OR- IIIND[ERSTANDUNG THE PSYCHHATRI1C TOWER O AB LIE
SUE GABRIEL,
PSYCHIATRIC NURSE PRACTITIONER
Most people who support people with developmental disabilities have had little training or experi- ence with the types of psychological/psychiatric problems that the people they support may experience. Though there are important and legitimate uses for psychiatric interventions, including the use of psychotropic medications, often medication is prescribed to restrain a person chemically or simply to reduce behavior problems. The use of medication for chemical restraint has caused many advocates to avoid mental health services for persons with developmental disabilities. As a result, sometimes people's mental health needs go undiagnosed and untreated. This Special Symposium will review a full range of issues in supporting people who have both developmental disabilities and psychiatric diagnoses.These include:
Understanding and supporting people who are agitated or aggressive. When people have self- injurious behavior, destroy property, or are aggressive towards others, family members and other advocates struggle to understand and reduce the aggression. Often people feel powerless to help. This symposium will provide important information for understanding the stressors that lead to aggression, in all of its various forms, and how family members and staff can support people in positive ways to reduce these behaviors.
Understanding depression, another major category of psychiatric diagnosis. Participants will gain familiarity with assessment and treatment issues including the appropriate uses of medication and other non-pharmacological options.
Recognizing the signs of other psychological or psychiatric problems including: bipolar disorder, attention deficit/hyperactivity disorder, anxiety disorders, sleep disturbances, obses- sive compulsive disorders, post traumatic stress disorder, schizophrenia and psychotic disor- ders. Participants will learn to identify when these may be issues for their family member or the people they support and the roles family members, staff and other advocates can play in assuring proper assessment and respectful and effective interventions.
The "Psychiatric Tower of Babble" is a user-friendly, highly participatory symposium designed for those with a heart for advocacy but without a medical degree.
17 PAGE 9 TASH Affewslletter, September 2000 57 RODS
Advocacy Eugenics, Euthanasia and Family Gatherings Friday Assisted Suicide: the History and Friday and Saturday Strand Coordinator: Mary Hayden Resistance Strand Coordinator: Barbara Buswell Join this lively strand for a series of Thursday This strand, with its opening presentations on advocacy and self- Strand Coordinator: Michael Bailey crackerbarrel, will frame the current issues advocacy. Sessions will be facilitated by Eugenics, euthanasia and genocide are facing people with disabilities and their advocates and self-advocates and will part of our history. Not Dead Yet will family members. Join other family focus on the skills needed to effect lead a discussion on that history, the role members as they share strategies, chal- change at both the personal and policy of the assisted suicide movement, and the lenges and successes in a variety of topics levels. All sessions within this strand will recent referendum in the State of Maine. ranging from childhood to adulthood. provide opportunities for discussing ideas and for sharing strategies for success. Community Living Governmental Affairs Friday and Saturday Friday Developing Effective Supports for Strand Coordinators: Patti Scott and Joe Strand Coordinator: Mike Auberger utism at the Systems, Wyhowshi In keeping with the "new millennium" and Ondividu0 Levels This strand focuses on a variety of issues the Governmental Affairs Strand offers a Friday concerning living in the community glimpse into the future of advocacy and Strand Coordinator: Don Kincaid including supports, relationships, vital issues facing TASH members and the The four presentations in this strand will employment, and conversion of group disability community. In addition, this address effective strategies and systems living situations to supported living. strand will include the latest information change that reflects best practices in on IDEA and what TASH members need autism. These best practice topics Ending the Silence and to know and what needs to be done. include comprehensive positive behavior Invisibility of Crime Victims with support, inclusion, natural environments, Disabilities Gu rdianship: Melding TASO-O child and family centered focus, collabo- Thursday Values withest Practices rative training and meaningful outcomes. Strand Coordinator: Lisa Sonneborn Thursday Research shows that people with disabili- Strand Coordinator: Dohn Hoyle Older Adults with Developmental ties are twice as likely to experience a vio- This strand includes sessions that discuss Disabilities: Supporting Later Life lent crime as are their non-disabled peers. guardianship as the last civil rights Choices and Community Options Despite this disturbing trend, crimes against frontier, exploration of strategies for best Thursday people with disabilities are underreported, practices in alternatives to legal guardian- Strand Coordinator: Alan Factor and are rarely prosecuted to the full extent ship, and issues related to wills and trusts. Older adults with developmental disabili- of the law Sessions in this strand will iden- ties face the same age-related concern as tify barriers to due process, recommend Design and Omplementation of the general population: filling their strategies for interagency collaboration, and Statewide Alternate Assessment increased free time with meaningful teach basic personal safety skills. System activities, coping with the loss of family Friday and friends, and remaining in their own rly Childhood Strand Coordinator: Donna Lehr homes as long as possible despite health Thursday Included in this strand are sessions in and functional losses. Yet, older adults Strand Coordinator: Alan Berger which presenters will describe their have little experience in making choices This strand includes sessions that states' or districts' models for meeting the and in using community resources and highlight critical issues and practices in IDEA requirement that all students supports. The sessions featured in this creating inclusive early education and participate in required high stakes strand will teach participants how to childcare options for young children with accountability system. The emphasis will support older adults in making later life severe disabilities and their families. be on the approaches used to assess choices and in person-centered plan- students for whom the standard assess- ning, and strategies for accessing aging ErnOloyment ment systems are not appropriate. network programs and services and ThursdaySaturday other community supports to meet Strand Coordinator: Michael Callahan Inclusive Education:est Practices individual later life choices. This strand features sessions covering all the Thursday hot issues related to the employment of Strand Coordinator: Gail McGregor people with disabilities. Topics will include Join this strand as it highlights sessions natural supports, choice, conversion, indi- vidualized planning and much, much, more! Continued on page 1i
PAGE 10 1 S 8 TAW liklewsieffer,September 2000 S4RAIM DS
Continued from page 10 both presenters, and participants will Literacy is a critical life skill. The past de- respond to focused discussion questions to cade has marked a shift in research, prac- that offer best practices in creating identify emerging themes around the tice and learning. This strand will offer inclusive education opportunities for global inclusive movements as well as to participants the opportunity to become fa- people with disabilities. highlight activities in various nations and miliar with current research, best practices, regions across several continents. support networks, and outcomes related to Postsecondary Choices and literacy instruction for all learners. Challenges: College as the New inclusion in Urban Schools Frontier Friday Serving Culturally and Friday Strand coordinator: Rebecca Salon Linguistically Diverse individuals Strand Coordinators: Caren Sax and Jeff Strully This interactive strand highlights what Friday Postsecondary education offers new works in urban educational settings the Strand Coordinator: Lynda Baumgardner options for people with significant activities, strategies and approaches Individuals with significant disabilities disabilities as they exit high school. Just through which students with disabilities who come from culturally/linguistically as tackling the educational environment have been successfully included and diverse backgrounds may face twice the in elementary and high schools presented educated in their neighborhood schools. barriers and segregation. This strand will new challenges and opportunities, Sessions feature approaches to school- provide innovative, culturally responsive accessing colleges and universities requires wide positive behavioral support, instruc- approaches and examples. creative strategies and collaborative efforts. tional improvements and other school- Join us for a strand that identifies the wide approaches that have resulted in Paraeducator [Issues and Practices issues, features effective approaches, and individual and school-wide success. Thursday offers real stories from people with Strand Coordinator: Michael Giangreco disabilities who are attending colleges and Whole School Reform and This strand addresses paraeducator issues universities. We're all still learning, so Inclusive Education and practices ranging from national stan- come share your questions and solutions. Thursday dards to school and classroom practices. Strand Coordinator: Michael Peterson Supporting Students with Severe This strand will explore the connection of Personnel Preparation Disabilities to be Real Members inclusive education to whole school ThursdaySaturday of High School Communities reform efforts.It includes a series of panel Strand Coordinator: Diane Ryndak Thursday presentations and dialogue with partici- Join this strand as it highlights timely Strand Coordinator: Carol Tashie pants. First, a panel will discuss the needs issues and progressive strategies for Inclusive education is happening across and strategies for building connections preservice and inservice educators. This the country. But for many high school with whole school reform efforts based on strand will also feature sessions regarding students labeled with severe disabilities, the experience in schools of the present- post secondary education, as well as a their school days involve separate "life ers. Second, presenters will share their special focus on distance delivery. skills" classes, community-based instruc- experiences in engaging in whole school tion, and "transition planning" into reform in which inclusive education plays Positive Approaches/Positive sheltered adult environments. This full a central role. Finally, a panel will discuss Behavior Support day strand is designed to offer TASH the work of the Whole Schooling consor- Thursday and Friday members the opportunities to hear short tium, and developing whole school reform Strand Coordinators: Tim Knoster and Rob presentations from leading experts in the framework that places inclusive education O'Neill This strand will highlight practical area of inclusive high school and college at the center of the model. Participants are application and research on positive education, as well as participate in free invited to join and contribute to this work. approaches to supporting individuals flowing, round table discussions de- with histories of problem behavior. In signed to answer your specific questions Recreation Options and particular, this strand features ways to and concerns. Join us for a day-long, Opportunities expand findings and horizons in research, interactive session, and learn and teach Friday and translation of research into practice, others how high school inclusion can be Strand Coordinator: Cindy Burhhour across home, school and community a reality for all students. Recreation improves the quality of our lives and our communities. This strand settings. international inclusion will present strategies for making Thursday recreation inclusion a reality in the lives Related Services Supporting Strand Coordinator: Anne Smith of children and adults with disabilities. Inclusive Education This strand will explore dimensions of Friday Strand Coordinator: Beverly Rainforth inclusion/exclusion around the world. It Literacy Related services including OT, PT, and will be structured for interactive discus- Friday sion. Following brief panel presentations, Strand Coordinators: LeonorePelligrino-Sino and Amy Staples Continued on page 12
PAGE 1I9 1TASD-11 Mewsieffer, September 2000 STRANDS
Continued from page 11 regarding issues of sexuality. This strand styles and disabilities. But what models will highlight sessions that address of professional development are most speech/language, can be important issues related to this critical topic. successful? What are the characteristics supports to inclusive education, but often of effective professional development? are provided as separate pull-out Spirituality: Honoring the Unique How can we train and retain the best and services. Sessions in this strand will Expressions brightest to teach all of our nation's present principles and strategies to Friday children and youths? Join this strand, arrange for and provide related services, Strand Coordinator: Maureen Keyes as we learn together. as IDEA requires, in the least restrictive The introduction of spirituality into any environment and so they support the conversation yields varied responses from [Innovative Transition Practices for education program. suspicion to relief. This strand contains a thieving Typical Adult Life Styles variety of perspectives on the topic of ThursdaySaturday Where Science and Advocacy Meet spirituality as it relates to community, Strand Coordinator: Pat Rogan ThursdaySaturday disability, justice, equity, and leadership. This strand provides an array of exciting ses- Strand Coordinator: Linda Bambara sions that address positive practices for tran- TASH is a place where both researchers Students Who Severely Challenge sition from school to adult life. Session top- and advocates can work together to address SchoolsBut Who Do Not Have ics include student-centered assessment and the needs and concerns of people with dis- Labels of "Severe" Disabilities planning approaches, innovative options for abilities and their families. This strand high- Thursday preparation for adult lives, post-secondary lights the emerging synergy between sci- Strand Coordinator: Linda Rammler education opportunities, and collaboration ence and advocacy, resulting in the most This strand seeks to apply TASH values with adult services and supports. progressive research in the disability field. and best practices concerning inclusive Open to all participants, we hope that the education, positive behavior supports, The Science and Art of AAC and research strandsessions will generate family supports, and self-determination General Educ tion Curriculum excitement about this new generation to a group of students who have not Supports of research. traditionally been the focus of TASH's Friday advocacy efforts because they do not have Strand Coordinators: Michael McSheehan and Self-Determination labels of severe disabilities. Rae Sonnenmeir Use of AAC in general classrooms is increas- ThursdaySaturday ing. Meaningful experiences for students Strand Coordinator: Elizabeth Obermeyer Professional Development: and Patti Scott More Powerful Teaching with disabilities depend on thoughtful cur- The concepts of self-determination are Friday riculum design, technology, and push-in sweeping the country and indeed the Strand Coordinator: Janice Payne therapies. Join this strand to learn how to world! The age old principles of choice, Professional development is seen as the increase participation so students using authority, respect, freedom and account- key to successful school change and AAC need not reach some arbitrary "profi- ability are rising to the forefront at long restructuring, improved outcomes for all ciency" before being included. last. Sessions in this strand will include a students, and access to inclusive options cracker-barrel discussion to kick off the for individuals with diverse learning strand, followed by sessions on how to reinforce and cultivate the skills needed to practice these elements in youths with disabilities, stories of success and change from parents, people with disabilities, and their circles of support, and recent research findings. Conference Embracing the Sexuality of Ondividu ls with Significant in Canada?? Disabilities Thursday The Conference Committee is looking into the possibility of holding a future year's conference in Canada. The exchange rate is such that Strand Coordinator: Wanda Blanchett hotel and meal costs would probably be reduced by more than one- Sexuality and sexual expression are third. Given that the costs would be lower, does your organization, natural and important aspects of each of school or university prohibit travel outside of the United States? our lives. In order for individuals with Please respond by telephone (1-800-482-8274, ext. 103) or e-mail significant disabilities to express their
PAGE 9 2 19 0 TASD-11 alewslIefler, September 2000 AUTISWASPF,RaER'S
sridofe or Children wit Avaisvn A valuable video series with training manuals for parents and teachers of children with autism Developed by a team of professionals, Bridges for Children with Autism is a program to introduce parents and teachers to the Applied Behavior Analysis (ABA) approach for helping children with autism. ABA is an intervention based on scientific evidence. The series outlines the Bridges ABA program of systematic instruction that features help in generalization, behavior management, and socialization. Filmed with twelve children diagnosed with autism, pervasive developmental disorder, and Asperger's Syndrome, it details how to create success through reinforcement and sets a positive course for children with autism. Through the use of three videocassettes, the Bridges program addresses the development and review of an appropriate educational plan and can help viewers learn skills in writing targeted programs. By observing children working with professionals in nine content areas, viewers can gain insight into discrete trial and generalization training. The series closes with a tape that features training in data collection, behavior training, and instructional modifica- tion. A complete set of instructional manuals complements the video series.
Applied Behavioral Analysis - Tape 1Learn about autism Treatment of choice for and the application of parents educators Applied Behavior Analysis as well as review the development of an appropriate educational plan and how to write targeted programs. (47 minutes) Tape 2Observe eighteen different goals across nine content areas, such as attention, self-help, and receptive language, during one-to-one discrete trial instruction and generalization training. (117 minutes) Tape 3Learn to properly collect performance and behavior data and observe behavior management techniques, socialization training, and troubleshooting. (79 minutes) The ManualsIncluded with the series are Dr. Raymond Romanczyk's Individualized Goal Selection Curriculum and Library of Program Exemplars. These are designed to provide the information necessary to implement an ABA program. An introductory video is also included. For additional information and testimonials, see our 'MZW, AMID MATUM122' website: www.nprinc.com. Go transport gnoughp2 com Also see The Journal of the Qom, e afl3g) cs133ficeb a 11Iconk Association for Persons With Complete set/4 videos and 3 manuals I \ Etwosus DOD / Severe Handicaps, Vol. 24, Order # BRIP-TASH9 Price: $795.00 No.3, 1999 (pgs 162-173).
Order from: National Professional Resources, Inc., 25 South Regent St., Port Chester, NY 10573 Phone: 1-800-453-7461; Fax: 914-937-9327; World Wide Web Site: www.nprinc.com. Visa, MasterCard, American Express, prepaid and purchase orders accepted. Shipping & handling (including Insurance): Add $40.00 per order. Canada add 20% to all orders.
PAGE 13 WASH Riewsiletter, September 2000 C. *1 SESSIONS
_FLrcrn 20m21@nz ET@,Q
RDWOCEC. SctIlurdcm, December 9, 2000 (enkr.le "Planning for the Future of your Mursdcw, Decembere 77 2000 Special Needs Child" Mursckty December 7, 2000 Using the IDEA 1997 Time: 7:30 am 10:00 am (Poster Session) P.C.P- Enhancing the Lives of Amendments to Create Positive Speaker: Nadine Vogel ging Individuals with Change in Your District Developmental Disabilities Time: 11:45 am - 12:45 pm TAKE CONTROL! Be Your Own Time: 2:15 pm 3:15 pm Speaker: Mark Partin Advocate - Techniques for Speakers: Linda McDowell, Edwin Butler Cutting Through Red Tapel I-low to Define Self Advoc cy Time: 7:30 am 10:00 am (Poster Session) Planning and Promoting Positive Time: 3:30 pm - 4:30 pm Speakers: Jenny Wright, Heather Morrison Aging Experiences for Individuals Speaker: Gayle Gardner with Developmental Disabilities ADA Compliance in Medical Time: 3:30 pm - 4:30 pm Surrogate Parents: Protecting Facilities: "What if You Couldn't Speaker: Margaret Nygren the Educational Rights of Visit Your Own Doctor?" Children and Youth Under State Time: 7:30 am 10:00 am (Poster Session) RSSEISIVERM Guardianship Speaker: Jennifer Ross Schlussler Time: 3:30 pm - 4:30 pm TEXRIOLOSU Speakers: Lucille Zeph, Charles Zeph Rights, Safety, and Privacy 'Thuresdav, December 7, 2000 Time: 7:30 am - 10:00 am (Poster Session) The Inclusion of Students Labeled Rack% December 8, 2000 Speaker: Kenny Miller with Severe/ Profound Disabilities Attitudes and Advoc cy: in Regular Classroom Subject Areas Practicing What We Preach Mark, Set, Go Leadership for All Time: 10:30 am - 11:30 am Time: 8:00 am - 9:00 am Time: 7:30 am - 10:00 am (Poster Session) Speakej/ Peggy Locke Speakers: Donna Gilles, Winnie Roberson Speaker: Diana Robishaw Gayler, Tia Nelis, Elizabeth Obermayer Assessing Children's Assistive A Self-Advoc cy Training Technology Needs through Video Taking Control of Personal Te m....Supporting One in Your Conferencing Planning: A Training Project by Community Time: 4:45 pm - 5:45 pm and for Self Advoc tes Time: 7:30 am 10:00 am (Poster Session) Speakers: Thomas]. Simmons, Preston Lewis, Time: 9:15 am 10:15 am Speaker: Cherie Tessier Debra Bauder Speakers: Laurie Kimball, Tracy Hancock, Emma Haferman Speaking for Ourselves ScRurrcilav, December 9, 2000 Time: 7:30 am 10:00 am (Poster Session) Simple Technology Ideas from "Mixed Voices" A Training Speaker: Glennis Gold Around the Globe Curriculum on Inclusion for Time: 7:30 am 10:00 am (Poster Session) Board Participation Developing Advocacy Networks Speaker: Peggy Locke Time: 12:15 pm 2:30 pm for a Stronger Voice Speaker: Sharon King Time: 10:00 am - 11:00 am Assistive Technology Made Simple Speakers: Vendella Collins, Claudia Combs Wise Time: 10:00 am - 11:00 am Discipline Under ODEA's New Speakers: Sara Brannan, Katrina Dennison [Federal Regulations Advocacy-in-Action: Oncre sing Time: 2:45 pm 3:45 pm Access & Opportunities Through Speakers: Selene Almazan, Debra Feldman Partnerships RUUllISM Time: 11:15 am - 1:30 pm PreEdcw, December ell 2000 Flow to Achieve Inclusion Under Speakers: Rebecca S. Salon, Ricardo The Extinction of the Dinosaur [IDEA: A Step by Step Process Thornton, Robert Kennedy, Germaine Payne and the Evolution of an Agency Time: 4:00 pm 5:00 pm Wide PBS Delivery Model for Speakers: Patricia Cox Waldman, Judith Terle Children with Autism Time: 12:15 pm - 1:15 pm Speakers: Jennifer McFarland, Barbara Becker-Cottrill 192 Continued on page 15 PAGE 14 7TASP-0 Mei/n(10)7er, September 2000 SESSIONS
Continued from page 14 Partnering with Universities FrOckg, December 8, MOO Time: 1:30 pm 2:30 pm Bringing the World of Voice to Using Positive Behavior Support Speakers: Cate Weir, Carol Tashie individuals Labeled with Severe as the Framework of Early Disabilities Intervention for Young Children Lessons Learned from the Time: 8:00 am 9:00 am with Autism National Center for the Study of Speakers: Patricia Wright Time: 1:30 pm 2:30 pm Postsecondary Educational Speakers: Lise Fox, Pamelazita J. Supports The Lonesome Doves Ride Again! Buschbacher, Ann E. Dillon Time: 2:45 pm 3:45 pm Time: 9:15 am 10:15 am Speakers: Robert A. Stodden Speakers: Rosa McAllister, Melanie Ketchem, Contemporary Approaches in Will Turnbull, Renee Chastain, Chammi Applied Behavior Analysis: Child What Families are Asking About Rajapatirana, David Fialkowski, Tom Wink, Centered Applications in Natural Postsecondary Education Jennifer Paige Seybert Environments Time: 4:00 pm 5:00 pm Time: 2:45 pm 3:45 pm Speaker: Elisabeth Healey Learning to Speak in Middle Speaker: Cindy LAbbe School: Supporting the Develop- COMMUNICRUIKDR9 ment of Speed Through Typing Strategies for Developing and Mursckby, December 7, RCM Time: 12:15 pm 1:15 pm Implementing Learning Priorities Speakers: Jamie Burke, Sheree Burke, for individuals with Autism The Conversational Approach in Christi Kasa-Hendrickson, Alicia Broderick Time: 4:00 pm 5:00 pm a Person-Centered Program Speakers: Marjorie Russell, Nita Benito Time: 11:45 am 12:45 pm Speaker: Julie Tuifel Scthordcw, December 9, 2000 Practical Ways to Assess and COILMG Increasing Appropriate and Teach Pre-Language ftridcw, December 8, ROM Effective Communication Communication Skills College: Wishful Thinking or The Exchanges Between Typical Peers Time: 7:30 am 10:00 am (Poster Session) Next Logical Step? and Students Labeled with Speaker: Kathy Gilman Time: 12:15 pm 1:15 pm Severe Disabilities Speakers: Caren Sax, Jeffrey L. Shelly Time: 2:15 pm 3:15 pm Listening to Individuals Who Do Speaker: Kathleen Stremel Not Use Words to Communicate Time: 7:30 am - 10:00 am (Poster Session) Speaker: Vicki Gerrits Continued on page 17 00000000000000000000000000000000000000000000000000000000000000000 0 0 O 0 O What's free and how can you take advantage of it? Why, registration 0 O 0 O for volunteers to this year's information-packed, exciting TASH 0 O Annual Conference in beautiful Miami Beach, Florida, of course! 0 O 0 O 0 O 0 O j O If you would like to attend the conference and save on registration fees, 0 O this is the deal for you! As a volunteer, you donate a minimum of 10 0 O 0 O hours of service during the conference in exchange for complimentary 0 O 0 O registration to attend any of the more than 350 sessions, workshops and 0 O discussion groups on topics ranging from Advocacy to Urban Education 0 O 0 O Issues andeverything in between during your non-volunteer periods. 0 O 0 O 0 O Whether you've participated as a volunteer before, or would like to do so for the first 0 O 0 O time, your services are urgently needed as a Conference Volunteer! 0 O 0 O 0 O If you are interested in receiving more information or a0 O 0 O volunteer application, please contact Priscilla Newton, 0 O Volunteer Coordinator, at 0 O 0 O 1-800-482-8274, ext. 102 or send an e-mail to 0 O
0 . .), ' (7, -4 Are3ouooKone,for :7\ ,y err ,.- j H' '11
t comprekensive e 10 7' , 11. , *, istaff cleve8opment Nrf: optionsfor3our vvLU .- 8 7:7,,Avia. is trictpersonneH? Through the generosity of the Jacobs Family, TASH is pleased to continue the Emma Rose Scholarship Fund. The LLR.C.onsuOting BOLL purpose of the scholarship fund is to assist foster the growth of parent advocacy LEtacingffg3 and activism by honoring two parents resourcesffoo each year who have made a difference parae aucators0partaGo in the lives of people with disabilities. teachc0 adrninistcators We are accepting nominations (self- nominations are encouraged!) for this 'assessmentpersonn year's scholarship. Scholarship recipi- mi6, parento ents will have their conference registra- tion fee waived and their travel and ©Paraedueators: LiffeLines in the hotel expenses will be covered. Scholar- Classroomsix trainingmodules for ship recipients will be invited to present new and returning paraeducators at the TASH conference. Recipients are asked to commit to raising $200 ©Mekiing a training moduleand annually for the next two years toward guide for partner teachersworking the continuation of the scholarship fund. with paraeducators This year's scholarship recipients should 4.©Triplicity an administrator'sguide be willing to participate in selecting next 4C'to mentoring paraeducators year's recipients.
©Maxim a guide for linking To apply, send a letter describing why functional-contextual assessment you or the person you are nominating to instruction should be selected for this honor.Letters ©Students Firsta trainingmodule should be received by October 15th. for parents as partnersin the Special Send to: Nancy Weiss,TAstl,29 W. Education process Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Letters also can Ttda (Mg web da; Cu @egn. (10 Begmmore be sent by e-mail (nweiss @tash.org) or fax: 410-828-6706. For questions, call about ordering DTB2Gigg62t,CCIEtraining- dam§E2lig workshops, Esallhosting Nancy at410-828-8274, ext. 101 TOT1 your district. Donations for the Emma Rose Scholar- wwwollreonsulitfingocom ship are being accepted and can be PMB747 POB 6049 made to TASK at the address above. D Katy,TX 77491-6049 PH:281-395-4978 onsukting Fax:281-392-8379
TASH Mewslletter,Sepygernber 2000 PAGE '0619 SESSOONS
Continued from page 15 Overcoming Challenges to Achieve Successl Anthony's Story CRGRUING RMID The FC Coalition of Ondiana- Time: 2:15 pm 4:30 pm PSWORREMS REFS Serving Facilitated Speakers: Connie Ellington, Patti Scott, Thursday, December 7, ROM Communication Users and Reggie Regrut, Anthony Emili How Big is Your Circle? Facilitators in the Home, School, Enhancing Community Living of Time: 3:30 pm - 5:45 pm and Community Speaker: Jeff Moyer Time: 7:30 am 10:00 am (Poster Session) Minority Persons with Disabilities Speakers: Winifeld Wetherbee, Nancy Time: 4:45 pm 5:45 pm Speaker: Ming-Gon John Lian hiday, December 8, 2000 Kalina, Kim Davis, Ian Wetherbee Utilizing Arts Activities to Teach A "Textbook" Case of rOday, December 8, WOO Disability Awareness Reproduction: Representations People with Disabilities Get Time: 9:15 am 10:15 am and Ideologies in Introductory Involved in Neighborhood Life Speakers: Heather Downey, Gay Drennon, Marion Winters Special Education Textbooks Time: 8:00 am 10:15 am Time: 7:30 am 10:00 am (Poster Session) Speaker: Carolyn Carlson Speaker: Nancy E. Rice Saturday, December 9,X000 Creating and Sustaining Co- Using Art as a Medium for Literacy and Down Syndrome operative Partnerships Between impacting Communication, Time: 7:30 am 10:00 am (Poster Session) Staff and Family and Friends Behavior and Literacy with Speaker: John Elkins Time: 12:15 pm 1:15 pm Students identified with Autism Speaker: Susannah Joyce Time: 7:30 am 10:00 am (Poster Session) Speakers: Annie Hawkins, Irena Woodham CONMHOCIETIKA A D y in the Life of a Community SUPPORT Builder: Connecting People to CREIMINE1 JUSTICG Their Neighbors and CURRIMIUM OGSOSH Neighborhoods Thursday, December 7, 2000 Orriday, Decernber 8, EON Time: 1:30 pm 2:30 pm Criminal Victimization and Please note: The following sessions take place Speakers: Fredda Rosen, Emily Ellis, Ralph People with Disabilities Time: 2:15 pm 3:45 pm within a strand and the chairpersons are still Sanchez, Steven Hernandez in the process of identifying speakers, to be Speakers: Lisa Sonneborn, Rosemary announced at a later date. Communities of Tommorow: Willingham, Audrey Badger; Wendi Think Tank on Community and Demchick-Alloy, Beverly Frantz, James Considering AAC Economic Equity McAfee, Terri Pease Time: 12:15 pm 1:15 pm Time: 2:45 pm 5:00 pm Personal Safety for People with Speakers: Joe H. Wykowski, Jay E Klein, Disabilities General Education and AAC: Patti Scott, Judith Snow How Perfect! How to Perfect? Time: 4:00 pm 5:30 pm Time: 1:30 pm 2:30 pm Saturday, December 9, Speaker: Libby Harman E000 AAC, Assessment, and Listening Room Cognitive Labels Till's Creative Living Options- Time: 5:30 pm 8:00 pm Partnership in Developing Life Speaker: Lisa Sonneborn Time: 2:45 pm 3:45 pm Shares Synthesis and Reality: Stories of Time: 7:30 am - 10:00 am (Poster Session) Saturday, December 9, ROM Success and Struggle Speakers: Dafna Krouk-Gordon, Denise Ending the Silence and Invisibility Aronson, Dana Appleford Time: 4:00 pm 5:00 pm of Crime Victims with Disabilities Time: 7:30 am 10:00 am (Poster Session) It's Not Just About What You Do, Speaker: Lisa Sonneborn, Beverly Frantz COO RMURIMLOMINS it's What You Stop Doing 'Thursday, December 7, 2000 (Abandoning the Continuum) Life in the City: issues Related to Time: 10:00 am 12:15 pm Residential Supports and Social Speakers: James Meehan, Gail Fanjoy Networks in Urban Areas Time: 10:30 am 12:45 pm Speaker: Pam Walker, Nancy Rosenau 1D5 Continued on page 18 PAGE 117 TASH Mewsletter, September 2000 SESSIONS
Continued from page 17
INSFRMCG SDUCEVEICDR9 Pvilday, Decembev 8, 2000 .f.)
LOVE: Experiencing interactive \'1 Courses in Severe Disabilities __---- Over the Internet ---_...... , Time: 8:00 am - 10:15 am / Speaker: Richard Kiefer-O'Donnell, / Fred Spooner, Martin Agran . -
11 11 .fl. GRRU Q Odd ©© On Saturday morning enjoy a continental breakfast while visiting an impressive array of poster Muusdcqp, Decembev 7, 2000 presentations set up in the exhibit hall.This is a great opportunity to speak one-on-one with Early Childhood Crackerbarrel presenters from around the world who have prepared an interactive presentation on a variety of topic areas. Feel free to take your time to visit with each poster presentation, as there will be no Time: 10:30 am 11:30 am breakout sessions scheduled during this exclusive exhibit and poster presentation time. Speaker: Alan Berger If you are interested in presenting a poster session, please contact Kelly Nelson at [email protected] or by phone at 410-828-8274 ext. 105 to receive an application. Creating inclusive Early Care Communities: Building Foundation for Cooperative One-Stop Centers: Employment Sell-GmpD©vmen 4pctin- Behavior Services in a Fully Inclusive Setting Time: 11:45 am 12:45 pm sgO©n-Rge nudenU Time: 11:25 am - 12:15 pm Speakers: Linda Labas, Martie Kendrick Time: 9:15 am 10:15 am Speaker: David Hoff Speakers: Michael Callahan, Teresa ScAuirclictu, December 9, 2000 Expanding Self Directed Supports Callahan, Norciva Shumpert Play and Learn - Preschool Time: 12:20 pm 1:00 pm How D Contribute: See What Curriculum Speaker: Marilyn Bown, Rick Cobia, I'm S ying Time: 7:30 am - 10:00 am (Poster Session) Aaron Hillman Time: 12:15 pm 1:10 pm Speaker: Patricia Wright Job Development for the People Speakers: Shelley Dumas, Veretta Anderson, Promoting Continuity and Labeled with Severe Disabilities: Carolyn Robinson, Katherine Dumas inclusion for ADO Young Children A Process That Works Beyond Food, Filth, Flowers, and Their Families Time: 2:15 pm - 3:15 pm Folding and Fetching: it's ADD Time: 7:30 am 10:00 am (Poster Session) Speakers: Melinda Mast, Joan Sweeney, About Opportunity Speaker: Wayne L Fox Joe Shiba Time: 1:15 pm 2:10 pm The Effects of Journal Writing Looking For a Job? Strategies for Speakers: Deborah A. Gilmer, Alan Kurtz, on Stress Levels of Parents Locating, Obtaining, and Kathy Son, Lenny Berry after the NOCLI Maintaining Work in Rural Areas Discovering [Employment with Time: 7:30 am 10:00 am (Poster Session) Time: 3:30 pm - 4:30 pm Students, Families, and Teachers Speaker: Leasha Barry Speakers: Jeffrey Hooke, Lee Hockridge Time: 2:15 pm 3:15 pm Speakers: Norciva Shumpert, Twinkle Morgan GMFILOUMGMF Corporate Job Development: in Search of White Collar Jobs The Effects of Career Choice on CREGGRS Time: 4:45 pm - 5:45 pm (Employment Outcomes Speaker: Hans Swemle Vliuresdcw, Decemberr 7, 2000 Time: 3:15 pm 4:15 pm Employment Trends for the Year Speakers: Lori Garcia, Bruce M. Menchetti 2©©O: Challenges and Mdav, December 8, 2000 Opportunities Production of income through Ecological versus Standardized Time: 10:30 am - 11:20 am Micro-Enterprises Vocational Assessments Speaker: John Butterworth Time: 8:00 am - 9:00 am Time: 4:15 pm 5:00 pm Speakers: Doreen Rosimos, Darcy Smith, Speakers: Edward Grasso, Caroline Dipipi Jay Gleason, Sheldon McLean Continued on page 19 PAGE 18 196 1ASC-0 Agewsleiter, September 200© SESSIONS
Continued from page 18 Orrday, December 8, 2000 Eugene Marcus and His War Crackerbarrel on Family Issues Against Autism: A Dad/Son ScRurday, December 9, 2000 Time: 12:15 pm 1:15 pm Co- emoir From Concept to Reality: Speaker: Barbara Buswell Time: 7:30 am 10:00 am (Poster Session) Community Options Conversion Speakers: David Marcus, Eugene Marcus Prolect Partnering with Families to Time: 7:30 am10:00 am (Poster Session) Support Teacher Education When School Isn't Enough Time: 10:00 am 11:00 am Speaker: Dave Vasa Time: 1:30 pm 2:30 pm Speakers: William Sharpton, Rose A. Speakers: Beverly Fields, Stephanie Mahfood Critical Factors in the Gilbert, Margaret Lang Employment of Persons Labeled A Foot in Both Camps: Parents with Severe Disabilities Who use Sibshop: A Prevention Model for Who Are Also Professionals Assistive Technology Sisters and Brothers Time: 11:15 am 12:15 pm Time: 7:30 am 10:00 am (Poster Session) Time: 2:45 pm - 3:45 pm Speakers: Deanna Horstmeier, Ann Turnbull, Bud Fredericks Speaker: Fran Pollock Prezant Speakers: Pearl Wollin, Joan Carter
Who is Working Where? A Recognizing Autism in Onfancy Beyond the Basics, to the Belief National Estimate of Job Time: 4:00 pm 5:00 pm Time: 12:30 pm 1:30 pm Placements for Adults Labeled Speaker: Janet Duncan Speakers: Julie Pater, Margaret Cantey, with Mental Retardation Nancy Howe, Nancy Moore Time: 10:00 am 11:00 am (Poster Session) 3@hurday, December 9, 2000 Speaker: Marjorie Olney Life Planning for Persons with ©CAMRIMGMM, Special Needs Prolect RSVP: Expanding Time: 7:30 am10:00 am (Poster Session) RMIRS Opportunities for Vocational Speaker: Kevin Perline Pidday, December 8, 2000 Rehabilitation MiCASSA and What It Means To You Time: 11:15 am 12:15 pm Experience the Power of Assistive Time: 12:15 pm1:15 pm Speaker: Jane Rath Technology at Dome Speaker: Michael Auberger Time: 7:30 am 10:00 am (Poster Session) Supported Employment is What Speaker: Mary Kay Walch The Olmstead Decision Made Easy You Say It Os! Time: 1:30 pm 2:30 pm Time: 12:30 pm 1:30 pm WE CATT: We Build Speaker: Robert Kafka Speakers: Shelley Wells, Carolyn Robinson, Communication Access Through Veretta Anderson Technology ADAPT: Why Don't You Belong? Time: 7:30 am - 10:00 am (Poster Session) Time: 2:45 pm 3:45 pm OUNUMRSEIR Speakers: Sandra Alper, Charlotte Mull, Speaker: Linda Anthony Steve Noyes MSIMMCG eURRIDORMSNOP Thursday, December 7, 2000 Grandparents and the Young Child Eugenics, Euthanasia and Time: 7:30 am - 10:00 am (Poster Session) RUGHNRUINGS Assisted Suicide: The History and Speaker: Sylvia Martin 4hursday, December 7, 2000 Resistance Alternatives to Guardianship Time: 10:30 am 12:45 pm Technical Assistance: A Parent's Time: 2:15 pm - 3:15 pm Speakers: Michael Bailey, Marsha Katz, Perspective Speakers: Dohn Hoyle, Kathleen Harris Bob Liston, Michael Reynolds Time: 11:00 am - 12:15 pm Speakers: Laura L. Triulzi, Melinda Creative Solutions as Morrison, Maurice Escobar, Linda Parras Alternatives to Guardianship for Adults with Disabilities Murrsdcw, December 7, 2000 Emotions and Coping Time: 3:30 pm 4:30 pm Nurturing with Daddy Ron and Time: 7:30 am - 10:00 am (Poster Session) Speakers: Freya Koger, Linda Bambara Son Micah Speaker: Georgia Pappas Time: 2:15 pm 3:15 pm Estate Planning: An Alternative Speakers: Ron Taylor, Micah Taylor to Guardianship Time: 4:45 pm 5:45 pm Speakers: Kathleen Harris, Dohn Hoyle r. 7 Continued on page 21
PAGE 19 TASC-11allewsleffer,September 2000 EXI-00BDTS
Join us in Miami Beach for what is sure to Some of the many exhibitors to be one of TASH's most informative and be seen at the 2000 TASD-I festive annual meetings ever! Not only conference include: will this year's conference highlight AbleNet exciting new presentations and returning APSE favorites, but this year marks TASH's 25th Aurora Ministries anniversary, as well. The Exhibit Hall Brookes Publishing Company will be the hub for our Silver Anniversary Center for Technical Assistance celebratory events, including the site of Human Policy Press, Center on Human Policy TASH's very first Silent Auction! Diverse City Press Inclusion Press International Daily events to increase booth International Rett Syndrome Association traffic include: Lifestyle Enhancement Services Conference registration and informa- Networks for Training and Development tion areas located just outside the The Nth Degree Exhibit Hall Peak Parent Center Trips, Inc. Plenary sessions on Thursday and William M. Mercer Friday in the East Ballroom adjacent to the Exhibit Hall Exhibit Schedule Exhibit Set-up Exclusive exhibit hours each day of Thursday, December 7, 2000 the conference 7:00 AM10:00 AM
Continental breakfast in the Exhibit Exhibit C-I ou rs Hall on Saturday morning Thursday, December 7, 2000 10:00 AM12:45 PM Poster sessions adjacent to the 2:00 PM 6:30 PM (5:30 PM 6:30 PM*) Exhibit Hall in the East Ballroom on Saturday morning Friday, December 8, 2000 10:00 AM 7:00 PM (5:007:00 PM*)
Saturday, December 9, 2000 7:30 AM 10:30 AM*
* Exclusive Exhibit Hours
To obtain an application or for more information contact Rose Holsey at 800- 482 -8274 ext. 100 or e-mail: [email protected]
0:19 oo
6
PAGE 20 1 0 3 TAM Alewsiletter, September 2000 SESSIONS
Continued from page 19 ScAurday, December c, E000 Creating Collaborative Seen But Not Heard: The Instructional Teams: An X[16KR GDUCOIKDR9 Representation of Disability in Organizational Perspective 7hursday, December 7, ECM Professional Training Textbooks Time: 2:15 pm 3:15 pm Time: 7:30 am 10:00 am (Poster Session) Speakers: Gail Ghere, Jennifer York-Barr, Creating Community and a New Julie Mahoney Train for Non-Categorical Speakers: Nancy Rosenau Certification: Re-Imagining Teacher Training in Special and Disability Related Service Needs h.fidcw, December 8, ROCO General Education and Satisfaction of University Giving Up the Edge Time: 9:15 am 10:15 am Time: 3:30 pm 4:30 pm Students Speakers: Karen Topper, Dawn Arsenault, Speakers: Patrick Schwarz, Valerie Owen, Time: 7:30 am 10:00 am (Poster Session) Carol Warner, Tracy Thresher Pennie Olson Speakers: Alo Dutta, Chrisann Schiro-Geist
Prridcw, December 8, 2000 EINCLUSOWG ScAurday, December 9, E000 Grade to Grade Transition Strategies for Teaching About GDIIIICETrOON Persons Labeled with Severe Strategies for "Teams" Disabilities Mursdcw, December 7, 2000 Supporting Students with Autism Time: 7:30 am 10:00 am (Poster Session) Time: 12:15 pm 2:30 pm The Principal and the Parent Speakers: Nila Benito, Marjorie Russell, Speakers: Keith Storey, Diane Baumgart, Collaboration for the Sake of Kids Linda Montgomery Diane Browder, Janis Chadsey, June Time: 10:30 am 11:30 am Downing, Carolyn Hughes, Donna Lehr, Speakers: Colleen Horton, Bill Henderson Whole Schooling: What Have We Beverly Rainforth Strategies to Facilitate Whole Learned About Successful Elements of Postsecondary School Reform Inclusion and Authentic Programs for Students Labeled Time: 10:30 am12:45 pm Curriculum in Wisconsin's Poor with Severe Disabilities Ages 18- Speakers: Ann T. Halvorsen, Mary Falvey, Rural and Urban Schools? 21 in Maryland Deborah L. Tweit-Hull, Dona Meinders, Jacki Time: 10:00 am 11:00 am Speakers: Kim S. Beloin, Paula Dehart, Time: 2:45 pm 3:45 pm L. Anderson, Linda Lee, Nancy Franklin Sandi Gallagher, Valerie Hopkins Speakers: Meg Grigal, Sherri! M. Moon, Debra Neubert Competence Oriented Teaching: Awareness and Practice "Not One More Thing" A Students With Disabilities as Time: 11:45 am 12:45 pm Longitudinal Study Examining Agents of Change: Transitioning Speaker: Robin Smith The Process Of Implementing into Leadership Positive Behavior Supports Time: 4:00 pm 5:00 pm Within An Urban Middle School Time: 10:00 am 11:00 am Speakers: Debbie Webster, Nancy Reid Speaker: Hank Edmonson
Using a Building-Level Planning Process to Promote Inclusion KCYU n,1311E 410 EKKODD4 UNDO V'ELLTP Time:10:00 am 11:00 am You can sa reach the TASEI Audilence!I Speakers: John]. McDonnell, Connie Mathot-Buckner, Nadine Thorson, Cathi If you are unable to have a booth in the TASH exhibit hall this year, but would Allen, Jeri Mendel like to take advantage of the opportunity to have your books, videos, brochures, catalogs, or pamphlets distributed or displayed to TASH Conference attendees, A Follow-up Study of Inclusion then this offer is for you! Practices in Pennsylvania Secondary Schools Brochures announcing new publications, videotapes, conferences and work- Time: 10:00 am - 11:00 am shops, or books which are targeted to parents, advocates, professionals, educa- Speakers: Steven R. Lyon, Becky Knichelbein tors, community service providers, or anyone attending the conference are welcome. For $119.00 we will display your product in the exhibit show! Case Studies in Inclusive Leadership If you would like an application to be part of the Display Table, please contact Time: 10:00 am - 11:00 am Kelly Nelson at 1-800-482-8274 x105 or [email protected]. Speakers: Diane Ketelle, Kathleen Gee
Continued on page 23
PAGE 21 j Si9 TASI-g agewsletter, September 2000 SEPVEMBER 2000
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DOROTHY KERZNER LIPSKY, PH.D. AND ALAN GARTNER, PH.D. o The move toward higher standards in our nation's schools has raised a major dilemma for educators committed to the inclusion of students with canwe disabilities. How can these students truly succeed in a learning environ- ment where academic standards and formalized testing are increasing? am both? 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. Through a dynamic and powerful aGt 11-92-4 [PLR Dorothy presentation Drs. Lipsky and LIENGartneMIL Gartner discuss: The Consequences of Higher Standards, The Seven Factors of Successful Inclusion, The Reauthorization of I.D.E.A., The Restructuring of Our Schools. Visit schools across the country and observe first- Authors: DOROTHY ,------\ vvanted. hand how the learning needs of all students are ALAN ivtamscriPtS fib KERZNER LIPSKY GARTNER guidelines, Aprincon% being successfully met in general education environments. Learn how special education is a service ABOUT THE AUTHORS: not a location. Understand that the inclusion of students is Dorothy Kerzner Lipsky is Director of not determined solely by where they are placed, but by their full and com- the National Center on Educational plete access to the same curriculum as the general education population. Restructuring and Inclusion, and Alan Whether a regular or special educator, this video is a must for pre-service Gartner is Dean for Research. Both are and inservice training. at The Graduate School and University Center, The City University of New York. 11998, VHS, 40 minutes Order #VSIIN- TASIHI1 $99.00
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PAGE 22 2 TAM agewsieffer, September 2000 o o SEPTEMBER 2000
Continued from page 21 Including Students Who Are Systematic Instruction within the Deafblind in Statewide General Education Curriculum Collaborative School Reform: Assessments Time: 3:30 pm 4:30 pm Restructuring [For All Students Time: 12:15 pm 1:15 pm Speakers: Kathleen Gee, Barbara Time: 11:15 am 12:15 pm Speakers: Jacqueline Farmer Kearns, Maria Thompson, Diane Lipton Speakers: Nancy Caldwell-Korpela, White, Leah Horvath, Stephanie Kampfer, Margaret Keeler, Joy Larson, Jack Jorgensen Mary Calie, Joyce Russo Everybody Mere Can Play: Promot- ing Inclusive Behavior in Classrooms Inclusive Education as Alternate Assessment in Time: 4:45 pm 5:45 pm "Outcome"? Intensive North Carolina Speaker: Mara Sapon-Shevin Behavioral Intervention for Time: 1:30 pm 2:30 pm Young Children Labeled with Speakers: Diane Browder, Fred Spooner, Prefidcw, December 8, MOO Autism Kathy Fallin, Naia Ward Using Daily Schedules to Teach Time: 11:15 am 12:15 pm Academic Skills to Students Speakers: Alicia Broderick A Pilot Study of the Pennsylvania Labeled with Moderate to Severe Alternate System of Assessment Disabilities MikICLUISM Time: 2:45 pm 3:45 pm Time: 8:00 am 9:00 am Speakers: Naomi Zigmond, Steven R. Lyon, Speakers: June Downing, Kathryn D. IIIMIMfTION- Donna Lehr, Audrey Kappel Peckham-Hardin GRIU RSSGSSCR Alternate Assessment Portfolios: Safe and Supportive Inclusive Uhursday, December 7, RCM Which Items Should be Included? Classrooms Building Linkages between Clow Will These Measures Make Time: 9:15 am 10:15 am Assessment and Instruction: a Difference? Speakers: Wayne L. Fox, Tim Fox, Kelly Outcomes-Oriented Curricula Time: 4:00 pm 5:00 pm Roche, Wes Williams Design for Students with Multiple Speaker: Alison Ford Disabilities ScRurday, December 9, E000 Time: 2:15 pm 3:15 pm ScRupday, December 9, E000 Centering on Children: Learning Speaker: Jan Writer Developing Communication from Abroad within Curriculum: The REAL Time: 7:30 am 10:00 am (Poster Session) Inclusive Education Strategies: Prerequisite to Cognitive Speaker: Cynthia F Sutton Linking Program Development Assessments to Assessment Time: 10:00 am 11:00 am Inclusive Assessment: One Time: 4:45 pm 5:45 pm Speakers: Rae Sonnenmeier, Michael State's Approach to Making All Speakers: Pamela W Holmdal, Joan Pabisz- McSheehan Mean All Ruberton Time: 7:30 am - 10:00 am (Poster Session) IINCLUSERM Speakers: Martha Toomey, Mary Ann Pact% December 8,, 2000 Mieczkowski Standards Based Reform and GINCRTIORIg Assessment SGSV PRRCTICG Strategies to Enhance the School Time: 8:00 am - 9:00 am and [Family Lives of Individuals Speaker: Douglas Fisher l'hursclicty, December 7, 2000 with Deaf-Blindness Lee's Determination to be Time: 7:30 am 10:00 am (Poster Session) Implementing a Portfolio-Based Included in Grades 4-12 Speakers: Kathryn Haring, David Lovett, Alternate Assessment System: Time: 10:30 am 11:30 am Jan Watts, Lisa Lawler Issues, Insights and Speakers: Barbara Ayres, Deborah L. Hedeen Recommendations Strategies for Collaborating to Time: 9:15 am 10:15 am Planning for the Diverse Classroom Differentiate Instruction Speakers: Kellie Anderson, Mary Ann Time: 11:45 am 12:45 pm Time: 7:30 am 10:00 am (Poster Session) Mieczhowski, Brian Touchette, Shaunna Speakers: Linda Davern, Roberta E Schnorr, Speakers: Nicki McGowan, Jessica Beasley, Crossen, Donald L. Peters James Black Melissa A. Brown Identifying Learning Opportunities An Inclusive Partnership in General Education Classrooms: Time: 7:30 am 10:00 am (Poster Session) Applied Creativity Speakers: Vicki A. McGinley, Donna Time: 2:15 pm 3:15 pm Wandry, George Drake Speakers: Joanne Eichinger, June Downing Continued on page 24 PAGE 23 01 TASB-ll fklewsletter, September 2000 SEP4EM ER 2©O©
Continued from page 23 Of Everyone Agrees Friendships Overcoming the Barriers to High Are important, Why Do So Many School Inclusion Providing Continuity in Special Kids Still Not Have Real Friends? Time: 11:15 am - 12:15 pm Education Inclusion Services: Time: 3:30 pm - 4:30 pm Speakers: Ann McKee, Susan M. Hamre- Preschool to School Age Speakers: Carol Tashie, Zachary Rossetti Nietupski Time: 10:00 am 11:00 am Hot Issues in High School Speakers: Linda E. Rosenthal, Janice Payne Inclusion and Beyond omciumm emcamom. Small Class She: The Key to Time: 4:45 pm - 5:45 pm LMERCU Successful inclusion Speakers: Douglas Fisher, Caren Sax PrOckay, December 8, 2000 Time: 10:00 am 12:15 pm The "Necessary Good:" High- Speakers: Julie Caustan-Theoharis, George Mckv, December 8, 2000 Quality Balanced Literacy Theoharis Discrepancies between the Spirit Instruction for All Learners nd Letter of Inclusion: An Time: 8:00 am - 10:15 am Overview of Whit Is and What Speakers: Leonore Pellegrino-Sino, Amy Staples ORTMUSIN Could Be for Middle and High SDUCRIVIKDN2 School Programs Critical Literacy and Children Time: 8:00 am - 9:00 am Labelled with Severe Intellectual [IRTMMETIONR11, Speaker: Bud Cooney Disabilities PRICLUSIION Time: 12:15 pm - 1:15 pm High School Inclusion: Students Speaker: Christopher Kliewer 'Thursday, December 7, 2000 with Cognitive Disabilities Attend Meeting Individual Needs in the their Home Schools Access to Literacy Activities by inclusive Classroom: A Case Time: 8:00 am - 9:00 am Study from Norway Students with Developmental Speakers: Cynthia Levine, Patricia Knipstein Dis bilities in Inclusive Primary Time: To be determined Classrooms Speakers: Inger Elisabeth Eigeland, Michael Promising Futures: Time: 1:30 pm - 2:30 pm D. Arthur implementing Learning and Speakers: Susan Gurry, Anne Larkin Outcomes for all Secondary Global Partnerships Students Access Literacy: An Inter ctive Time: To be determined Time: 9:15 am - 10:15 am Website to Support Literacy- Speakers: Mary E. McNeil, Maria Bove Speakers: Maria Timberlake, Betsy Enright Learning in Individuals with Disabilities inclusion in [Italy: Otis Simply Coalition of Essential Schools: Education Time: 2:45 pm 3:45 pm High School Restructuring Speakers: Amy Staples, Jane Steelman Time: To be determined Time: 8:00 am - 10:15 am Speaker: Carol Berrigan Speakers: Mary Falvey, Lori Eshilian, Mary It's Never Too Late To Le rn to Jane Hibbard Readl Systematic Reading EINCLUSIM Instruction for Emergent and Sakurcku, December 9, 2000 E rly Fluent Readers GMCKT[IONg High School Inclusion: Building Time: 4:00 pm 5:00 pm YrdeX SC-KOOL Inclusive Communities Through Speakers: Jennifer Butterworth, Nichi Murscll@y, December 7, 2000 Peer Support Networks McGowan, Melanie Hammond Why Are We Still Asking Why? Time: 7:30 am - 10:00 am (Poster Session) Speakers: Heather C. Young, Anne Thomas Time: 10:30 am 11:30 am EIRKLIMM OUCRTION° Speaker: Jeffrey L. Strully Making Friends in High School URIMM 11SSMS General Education Classes: Use 4hursclictiy, December 7, 2000 Asking the Essential questions of Self-Management Strategies About High School Curriculum to initiate Social interaction Optimizing Success Through Time: 11:45 am - 12:45 pm Problem Solving Time: 7:30 am - 10:00 am (Poster Session) Speaker: Cheryl M. Jorgensen Time: 10:30 am 11:30 am Speakers: Stephanie Fowler, Carolyn Hughes, Speakers: Jane Glodoski, Marsha Staum, Susan Copeland, Penny Church-Pupke Why Not Community is used Patriq Dusaint, Mary Ann Fitzgerald Instruction? Time: 2:15 pm - 3:15 pm 0 Speaker: Mary Schuh Li 4 Continued on page 26 PAGE 24 TASH Mewslietter, September 2000 SEPTEMBER 2000
O 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 00 0 0 00 0 0 0 0 0 0 0 r13 01% 4 0 O 0 Thankoru O 0 O O O b,,b O totbe toflowino O r, O O 44 .3.. 0 0 0 0iciaSponsors 0 0 0 0 0 , 0 fort err supportof the 0 0 0 0 c- .-' L- O ,: _,,, , -'",,,.:',13- '-'..'--7, _ `-'' 2000TASH O 0 ,) 0) '2. 0 7-..r. -4; 0 .1.4, ig it 0 0 f O Annual' Conference! 0 Ut .46.. Av 0 r, 0 0 t 4 Y ( '7'.7 \ 0 0 : 0 L LEGPCGITg 131)¢0 0 0 0 06frusp Newell Opeungev 0 0 0 0 $0,000 op move 0 0 wymuyomungusamavoceuun 0 0 0 Join others from around the world 0 0 0 0 to network at the 0 0 0 0 0 0 (2. emalcaiaIll® 0 0 0 0 0 0 Immohgem 0 0 ON THE GRAND LAWN 0 0 0 0 0 0 0 Thursday December Th from 1:00-2:15 PM. 0 0 0 0 0 ggiv MicAnri Dioack 0 Enjoy the fresh air and breath-taking view of the 0 0 pool for lunch while sharing stimulating discussions 0 Zeopam IDGpapOicamE{} 0 0 0 on a topic that interests you. 0 1317012DES OperiDoev 0 0 0 0 $2,0®0 op move 0 Tables will be labeled with suggested topics for 0 0 discussion, and/or questions to stimulate thought. 0 11043//olorolicarti-Exacido00110Do 0 0 0 If you have a specific topic that you would like to 0 0 discuss during lunch, please fax the following 0 0 0 0 information, or include with your registration form O 0 when you send it in the mail. 0 0 0 0 0 0 I would like to participate in a discussion on: 0 0 0 0 0 0 0 0 0 0 I am willing to facilitate this discussion 0 0 0 0 0 0 I suggest the following person to facilitate this 0 0 discussion 0 0 0 0 0 POlaDO Io MI:POelt@o PoCirdolhno Coo0 Participation in this event is only $10.00, which 0 0 includes a delicious boxed lunch. Be sure to register O riVOCEM ftoweEl Opemsev 0 0 0 when you complete your conference registration form. 0 0 0 Questions? Contact Kelly Nelson at 410-828-8274 O www.pbremkasocem 0 x 105 or email [email protected]. You can email your 0 0 0 0 topic suggestions; fax them to 410-828-6706; or send a 0 0 copy of this ad with your registration form! 0 0 0 0 Our thanks to Paul H. Brookes Publishing Com- 0 TM pany for co-sponsoring the roundtable luncheon. 0 0 0 0 O 0 0 0 0 0 0 00 0 0 0 0 0 0 0 0 0 0 0 0 0 0 00 0.0 o o '0 o o PAGE 25 DISH Wewsieffer, September 2000 3 SESSOONS
Continued from page 24 Community Inclusion in Latchkey Discrimination: Disability, Race, Progr. ms and Ethnicity Moving From Self-contained Time: 1:30 pm 2:30 pm Time: 1:30 pm - 2:30 pm Classrooms to Inclusion: A First Speaker: Ellen Fennick Speakers: Carl Lashley, Peggy Terhone Year Teacher's Experience Time: 11:45 am 12:45 pm Creating an Inclusive Early Multicultural Disabilities Network Speakers: Mia Belshy-Severin, Jane Glodoski Childhood Aquatics Program Time: 2:45 pm 3:45 pm Time: 2:45 pm 3:45 pm Speakers: Susie Schaefer, Regina Harris, Mdeu, December 8, E000 Speaker: Joanne Suomi Ginger Kwan Inclusive Practices in the Urban Neighborhood?: Yes, We Do Building Friendships and Russian Orphans- Their Plight Community for Adults with Time: 12:15 pm 1:15 pm and Promise Disabiiities Through College Time: 4:00 pm 5:00 pm Speakers: Alice Udvari-Solner, Tayotis Service Organizations Caldwell, Nancy Annaromao, Matthew Speakers: William Schofield, John Richards Time: 4:00 pm 5:00 pm Cuomo, Keona Jones, Mary Beth Minkley, Speakers: Amy Lynn Childre, Stacy Worden, Jan Bloedorn Saurecku, December 9, ROOD Cynthia Chambers Professional Preparation and Project CHOICES: Least Participation of Minorities in the Restrictive Environment Initiative ARNE16GMSTir State-Federal Rehabilitation in Dllinois - Focus on Change Agencies Time: 1:30 pm 2:30 pm [ISSUE, Time: 7:30 am 10:00 am (Poster Session) Speakers: Sharon Freagon, Ruth Henning, mundav, Decetrimber 7, ECM Speaker: Madan Kundu Theresa Montalbano, Ann Kremer, Bill Peters Effectively Managing Support Si ff Time: 10:30 am 11:30 am PROJECT ROOTS: A MulticulturI School inclusion and LOrb Speaker: Denise Mautz Journey Education Time: 7:30 am 10:00 am (Poster Session) Time: 2:45 pm 5:00 pm Hilarity Therapy: Moving the Speakers: Doug McCallum, Raquel Speakers: Wayne Sailor, Hank Edmonson, Peter Edge with Laughter Rodriguez, Michael Romanovitch, Christine A. Griggs, Donna R. Wickham, Shelly Beech Time: 11:45 am 12:45 pm Lynch, Barbara Morrell, Carlos Oliva Speaker: John Irvin SeDgirday, December 9, 2000 Culturalrokering: Providing From Lunch Buddies to Friends Tr ining Former Institution Staff Supports for Foreign-Born Time: 7:30 am 10:00 am (Poster Session) in Building Community Consumers Speakers: Nanho S. Vander Hart, Relationships for Adults Labeled Time: 11:15 am 1:30 pm Dolores Gribouski with Severe Disabilities Speaker: Paula Sotnik Time: 11:45 am - 12:45 pm LEISURG RED Speakers: Angela Novak Amado, Michael R. PRREVROPESIIONR11, Fitzgerald nundeu, December 7, EOM EGCREMOK Strategies for Strengthening Orkkv, December? 8, MOO MULTICULTIMM, Teacher- Paraeducator Ve ms Recre tion For All: Everyone's 4hurrsidev, December 7, E000 Time: 10:30 am - 11:30 am Having Fun An Inclusion Model for Speaker: Anna Lou Pickett Time: 8:00 am 9:00 am Community- ased Adult Speakers: Cathryn Maddalena, Steve Youngblood Education Let Every Voicee Heard! A Time: 11:45 am 12:45 pm Qualitative Study of Self-Determination in Choosing Speakers: Erik Jacobson, Reynald Raphael Paraeducators' Perspectives on Recreation and Leisure Services Working in Inclusive Classrooms Time: 9:15 am - 10:15 am (FrOdcw, December 8, F2000 Time: 11:45 am 12:45 pm Speakers: Jeff Bassin, Susan Fleming The Overrepresent tion of Speaker: Deborah P Goessling, James Minority Students in Special Artesani Enhancing Opportunities for Education Progr ms: Research Children with Disabilities in and Practical Implications ParaprofessionAdvocacy and Youth Programs Time: 12:15 pm 1:15 pm Training Time: 12:15 pm - 1:15 pm Speakers: Shanon Taylor, Michele Cervetti, Time: 2:15 pm - 3:15 pm Speaker: Dale Borman Fink Debbie Greenberg Speaker: Chiquita Morris Continued on page 27 0 4 PAGE 36 WASH agewsletter, September 2000 SESSIONS
Continued from page 26 Collaborative Outreach and The Effects of an Intervention Mentoring Support to Increase Package of Student Teachers' Distance Delivery: A Process for Diversity of Teacher Candidates Facilitation of Communication Determining When a Student Time: 3:30 pm 4:30 pm Time: 7:30 am 10:00 am (Poster Session) Requires Paraeducator Support Speakers: Patti Wright, Lori Goetz, Jacki L. Speakers: Barbara Phillips, James Halle Time: 3:30 pm 4:30 pm Anderson, Ann T Halvorsen, Catherine Speaker: Patricia H. Mueller Foster, Sonya Martin Essential Values and Skills for Inclusion Facilitators Training: Reaching Out to How Are University Faculty Time: 10:00 am11:00 am Everybody Infusing Information About Self- Speaker: Cheryl M. Jorgensen Time: 4:45 pm 5:45 pm Determination in Teacher Speakers: Mary Cavalier, Marjorie Kassier Education Courses? Promoting Person Centered Time: 4:45 pm 5:45 pm Transition Planning: An PGRSORRIG11, Speakers: Colleen Thoma, Steve Baker, Interactive Training Package Michael Wehmeyer Time: 11:15 am 12:15 pm PRGIMMTICH Speakers: Craig Miner, Paul Bates Mursdav, Decemberr 70 2000 StRurrdev, Decenthep 9, 2000 Picking the Pros: How Parents Research and Practice: Do Project DISCUSS - Building Partnerships Through Training Really Feel About Professionals Teachers Understand the As Their Partners, Collaborative Relationship? Time: 7:30 am 10:00 am (Poster Session) Speakers: Wendy Kalberg, Kathy Taylor, Teammates, and Service Time: 10:30 am - 11:30 am Providers Speakers: Martin Agran, Sandra Alper, Karen Wright, Pat Osbourn Time: 11:15 am 12:15 pm Kathy Davis, John J. McDonnell Exploring Issues Related to the Speaker: Susan Turben Practicing What We Preach: Implementation of "Best Using Performance Portfolios in Practice" by New Teachers Interagency Collaboration: The Time: 7:30 am 10:00 am (Poster Session) STARS Project: Building Alliances Teacher Education And Coalitions Time: 10:30 am11:30 am Speakers: Margaret Hutchins, Adelle Time: 12:30 pm 1:30 pm Speakers: Hollie G. Filce, Jimmie Phillips, Renzaglia Speakers: Roxann Lamar; Mary Cavalier William Sharpton, Christine Templet Teaching University Students Preparing Doctoral Students for About the Social Construction of PGRSONNGL Disability: Can One Course Make Employment in Higher PRGPRREFOOR1/ Education: TASH Transition Any Difference? Principles as Guidelines Time: 7:30 am 10:00 am (Poster Session) DEISURNC Time: 10:30 am11:30 am Speakers: Julia Sherba de Valenzuela, Speakers: Michael Brady, Diane Ryndah, Liz B. Keefe GDUCRTIORI Fred Spooner, Diane Baumgart Mday, Deceetrubev 8, 2000 Portfolio Evaluation for Inclusive Developing and Delivering Web- Does "All" Really Mean "All"? Teacher Preparation based Training in Severe Time: 10:30 m 11:30 am Time: 7:30 am 10:00 am (Poster Session) Disabilities Speaker: Mary Fisher Speaker: Susan Deluke Time: 8:00 am 10:15 am Speakers: Barbara L. Ludlow, Michael Duff UW- Milwaukee's Collaborative Training Teachers to Ensure that Teacher Education Program: Are Service Learning is NOT a Experiencing Interactive Courses Graduates Prepared to Teach Disservice for People with in Severe Disabilities over the Students Labeled with Significant Disabilities Internet Disabilities? Time: 7:30 am 10:00 am (Poster Session) Time: 8:00 am 10:15 am Time: 11:5 am 12:45 pm Speakers: Pamela Gent, Louis Gurecka Speakers: Richard Kilfer-O'Donnell, Fred Speakers: Maureen Keyes, Alison Ford Spooner, Martin Agran Teacher Preparation: Putting Becoming A Reflective Principles of Positive Practitioner: Preservice Teacher Programming into Practice Preparation in the age of Time: 7:30 am 10:00 am (Poster Session) Inclusion Speakers: Marylud Baldwin, Mike Ruef Time: 2:15 pm 3:15 pm Speakers: Barbara Gruber, Heather C. Young Continued on page 28 205 PGE 27 TASD-11 Wewsletter, September 2000 SESS0CMS
Continued from page 27 The Many Faces Of Self The Impact of Positive Modeling- Applications of Video- ehavioral Support on the POSIIMM Based Self Modeling with quality of Life of a Child with an Challenging Behaviors and Autism Spectrum Disorder RPPRORENS Autism, Reading and Speech, Time: 7:30 am 10:00 am (Poster Session) ugturaw, Decemberr 7, 2000 and Transitions Speakers: Jonathan Worcester, Glen Dunlap The Behavior Management Time: 8:00 am - 9:00 am Practices of Special Education Speakers: Marilyn Connor, Preston Lewis, Positive Approaches and Autism: Teachers & Their Modification Tom Buggey, Peter Dowrich Critical Thinking and Time: 10:30 am 11:30 am Constructive Applications People First- Pushing the Paradigm Time: 7:30 am - 10:00 am (Poster Session) Speakers: Karena Cooper-Duffy, David L. Time: 9:15 am - 10:15 am Speakers: Michael McSheehan, Rae Westling, Dean Schofield Speaker: Bob Bowen Sonnenmeier Team Training for Positive Behavioral Support: Descriptions Paid Relationships are Omportantl Where Have 01 the at State & Local Levels Time: 9:15 am 10:15 am Headaches Gone? Speakers: Linda Bambara, Ophelia N. Time: 11:45 am 12:45 pm Time: 7:30 am 10:00 am (Poster Session) Gomez, Freya Koger, Sharon Lohrmann- Speakers: Marilyn Bown, Aaron Hillman Speakers: Jacki L. Anderson, Don Kincaid, O'Rourke, Yan-Ping Xin Josh Harrower Development, Field-test and Effective Behaviour Support in Providing Positive Behavioral Evaluation of a CD-R Prototype Schools: Evaluation of a Community and On-Home for Teacher Use: Tools for Provincial Initiative Supports For Youngsters with GsOonaversive Beh vior Time: 2:15 pm 3:15 pm Autism - Making it Workl Intervention for Young Children Time: 12:15 pm - 2:30 pm Time: 7:30 am - 10:00 am (Poster Session) Speakers: Pat Mirenda, Shirley McBride Speakers: Sara B. Woolf, Laurel Ross, Speakers: Patti Campbell, Charles Campbell Continuing the Fight Against Carolyn Scali Contingent Electric Shock & Using Positive Behavioral Other Aversive Strategies: A Positive Approaches: Taking Support to Improve School/Home Legal & Clinical Analysis the Leap Relationships Time: 12:15 pm 5:00 pm Time: 3:30 pm 4:30 pm Time: 7:30 am 10:00 am (Poster Session) Speakers: Michael Dowling, Anne Speakers: Fredda Brown, Matthew Engel, Speaker: Sara Goldberg Donnellan, Martha Leary, Anna Eliatamby, Lauren Carasik Amanda Caine, Joe Whittaker, Bonnie Forsyth Creating Safe Space !Undoing the Damage of Discrete Time: 10:00 am 11:00 am Trial Training The Values and Ethics of Speaker: Gail Mueller Time: 4:45 pm 5:45 pm Behavior Change Time: 2:45 pm - 3:45 pm Speaker: Susan Deluke Coping with Disability Related Stress Speakers: Larry Douglass, Nancy Weiss, Time: 10:00 am 12:15 pm Anne Donnellan, Jeffrey L. Strully Speakers: Elizabeth A. Desousa, R. William Oviidav, De¢embev 8, MOO English Positive Approaches in Facilitating Positive Behavior Behavioral interventions for Support Teams Positive Approaches and Children with Autism Time: 4:00 pm - 5:00 pm Functional Communication Time: 8:00 am 9:00 am Speakers: Jessica Beasley, Jayne M. Training Speakers: Marilyn Lauer, Mendy Boettcher Stooksbury Time: 11:15 am 12:15 pm Speaker: Steve Baker 'Without Coercion Sauredcw, ©r 9, E000 Time: 8:00 am - 9:00 am Promoting Social Interaction The Role of PBS as a Pathway to Speakers: William H. Ashe, Theresa Wood, Between a Young Child with a Family, School, and Community Susan Yuan Disabiiity and Children without Partnerships Dis biiities: A Social Time: 11:15 am - 12:15 pm Intervention Speakers: Rachel Freeman, Wayne Sailor, Time: 7:30 am 10:00 am (Poster Session) Jody Britten, Amy McCart, Christopher Speaker: Delann Soenksen Smith, Hank Edmonson, Donna R. Wickham, Peter A. Griggs C 6 Continued on page 29 PAGE 28 MCI Rfiewsiletter; September 2000 SESSIONS
Continued from page 28 Longitudinal Research in the "OOS Sensei, Oos Sempail ": Community: Case Study Lessons on inclusion from a Demonstrations of the Effects of artial Arts School RGLEIND SMEICGS Implementation of Positive Time: 7:30 am10:00 am (Poster Session) Miday, December 8, 2000 Behavioral Support Speaker: Shridevi Rao Eligibility Criteria for Related Time: 8:00 am 10:15 am Services: Revisiting Legal and Speakers: Richard Albin, Glen Dunlap, Rob "II Know How To Do": Stories of Support Issues. Horner, Wayne Sailor Choice, Control, and Power Time: 2:45 pm 3:45 pm Time: 7:30 am 10:00 am (Poster Session) Speaker: Beverly Rainforth Behavior States in Students Speaker: Phil Smith Labeled with Severe and Multiple Motor Control and Motor Disabilities: Descriptive Data Behaviour States in Students: Learning in Inclusive Education Time: 9:15 am 10:15 am Further Analyses Time: 4:00 pm 5:00 pm Speakers: Michael D. Arthur, Jeff Sigafoos Time: 7:30 am10:00 am (Poster Session) Speaker: Deborah Bubela Speaker: Michael D. Arthur eyond Apples and Oranges: NiSaRC" [Issues of Meta-Analysis in Multi- The Service Coordination Scale Paradigm Research Synthesis Time: 7:30 am 10:00 am (Poster Session) 'Thursday, December 7', 2000 Time: 12:15 pm 1:15 am Speaker: Todd Case Definitions Used with Persons Speakers: Phil Ferguson, Dianne Ferguson Having Severe Disabilities in The Nature and Sources of Research: Are We Any Closer to Achieving Inclusive Restructured Educators' Comfort and/or An Understanding or Consensus? Schools Through inquiry-Based Concerns with inclusion Time: 10:30 am 11:30 am Building Leadership Teams Time: 7:30 am10:00 am (Poster Session) Speakers: Pamela Wolfe, James McAfee Time: 1:30 pm 2:30 pm Speaker: Diana Lawrence-Brown Speakers: Elizabeth Kozleski, Dianne Ferguson Where Science Advocacy, and Evaluating the Processes and Values Meet Working With Coworkers to Select Outcomes of an inclusive School Time: 10:30 am 12:00 pm Appropriate Levels of Support Program Speakers: Craig Kennedy, Linda Bambara Time: 2:45 pm 3:45 pm Time: 10:00 am 11:00 am Speakers: Janis Chadsey, Yoshihisa Ohtake Speakers: Stacy Dymond, John Kregel, Research on Par professional Martha Nigrelli Supports in General Education Liberatory Theory and Paulo Classes: A Case Study of a K -il 2 IFriere: A Pedagogy for inspiring Building a Collaborative Support System Inclusion System: A School Task Force's Time: 2:15 pm 3:15 pm Time: 4:00 pm 5:00 pm Role in Systemic Reform to Speakers: Michael F Giangreco, Stephen Speakers: Paula M. Kluth, Jacqueline Thousand Support all Students Broer, Susan Edelman Time: 11:15 am12:15 pm ScAurday, December 9, 2000 Speakers: Denise Clark, Diane Ryndak Promoting Postive Parental The Function of "Virtual" Adaptation to a Child's Disability Community in the Creation of a The Family Network Project: Time: 3:30 pm 4:30 pm Community Life: The Emerging Providing Positive Behavioral Speakers: George H.S. Singer, Leasha Barry Role of the Internet in Support to Families from Community inclusion Underserved Communities Valued Outcomes & Performance Time: 12:30 pm 1:30 pm Indicators for Students With Time: 7:30 am 10:00 am (Poster Session) Speaker: Joanna Royce-Davis Speakers: Bobbie J. Vaughn, Lise Fox, Deaf-Blindness Glen Dunlap Time: 4:45 pm 5:45 pm Using a Webcam as an Speaker: Lori Goetz Alternative Delivery System: "Any Time, Anywhere Mday, December 8, 2000 Consultation Through Onside Looking Out: Student Technology" Perspectives on inclusive Time: 7:30 am 10:00 am (Poster Session) Education Speakers: Emily Watts, Jo Robertson Time: 8:00 am 9:00 am Speakers: Laurie R. Lehman, Valerie A. Lava Continued on page 30
PAGE292 0 7 TASI-g Rfiewsieffer,September 2000 SESSIONS
Continued from page 29 Shake, Rattle, and Roll: Creating Of the People, Icy the People, For Change Through Self- the People: Be an Active Part in SEO- Determination Your Government Time: 9:15 am - 10:15 am Time: 7:30 am 10:00 am (Poster Session) DEMMIMRTIOM Speakers: Ann Marie Campbell, Kathy Speaker: Lois Rogers Thursday, liDecembarr 7, 2000 Sykes, Barbara Prince, Carolyn Morgan, Deborah Robinson The Self-Determination Network Using Self-Determination Time: 7:30 am 10:00 am (Poster Session) Principles to Plan for Children of "Reaching My Own Greatness"- Speakers: David Guare, David Wyher Adolescents A Self-Determination Program Time: 11:45 am 12:45 pm that is Activities Based The Road to Freedom: Choice Speaker: Ellen Cummings Time: 12:15 pm 2:30 pm Theory, Reality Therapy and Self- Speaker: Donna Lowary Determination YOUTFOSPEAK: Promising Time: 10:00 am - 11:00 am Futures for MEI Thriving in t. Ay Community: a Speakers: David P Sansone, Robert Renna Time: 2:15 pm 3:15 pm PI n for independence, Support Speakers: Janet May, Bonnie Robinson, and Belonging Self-Direction, Self-Determination Elijah Steward, Deborah A. Gilmer Time: 2:45 pm 3:45 pm and Care Accreditation Speakers: Gail M. Godwin, Linda Time: 10:00 am 11:00 am Are 'Teachers Determined to 'Teach Essenmacher, Kathy Vecchioni, Ellen Franks, Speaker: Dale Dutton Self-Determination? Results of Donald Row Contemporary Rese rch Self-Determination Synthesis Time: 3:30 pm - 4:30 pm Vermont Self-Determination Prolect: Final Report Speaker: Thomas Holub Prolect: Families, Self-Advoc tes, Time: 11:15 am 12:15 pm and Professionals Working Speakers: Wendy M. Wood, David W Test, Peer Counselling for People Together Diane Browder Labeled with Mental Ret rdation Time: 4:00 pm 5:00 pm and Cognitive limp irments Speakers: Kim Daniels, Phil Smith, Patty Re lizing My Potential Through Time: 3:30 pm 4:30 pm Grassette Communication, Self- Speaker: Joe Meadours Determination & Self-Advocacy Sahovday, Dezambev 9, 2000 Time: 11:15 am - 12:15 pm Self-Determination and Young Speakers: Jennifer Paige Seybert, James Adults Who Are Deaf-Blind Leadership Today: Partners in Seybert, Kendall Seybert Time: 4:45 pm 5:45 pm Effective Decision-Making Speakers: Susie Morgan, Jamie McNamara Time: 7:30 am 10:00 am (Poster Session) Using Self-Management to Speaker: Sandra Mak Improve Study Skill Performance Teachers' Facilitation of Self- of Nigh School Students with Determination in Secondary Philadelphia's Self Extensive Support Needs in Students with Moder te Determination Initiative General Educ tion Classrooms Development and Disabilities: Time: 7:30 am 10:00 am (Poster Session) Time: 11:15 am - 12:15 pm An OnitiI Case Study Speaker: Diane Lackey, Ann Marie Speakers: Susan Copeland, Stephanie Time: 4:45 pm 5:45 pm Campbell, Liat Richardson, Octavia Green Fowler, Carolyn Hughes Speakers: Maureen E. Angell, Stephanie Kouzouhas Three Required Components of RIFFS: A Conceptu Model For Successful Transition Processes Empowering Persons and Families According to Students with Time: 12:30 pm 1:30 pm Mday, Decembev 13, 2000 Disabilities 2 + 2 = 5 When is Self Speakers: R. William English, Elizabeth A. Desousa Time: 7:30 am 10:00 am (Poster Session) Determin tion Greater Than the Speaker: Thomas Neuville Sum of Its Parts? SEMDRILM Time: 8:00 am - 9:00 am eliieve in Yourself: The Road to Speaker: Marilyn Kuna ecoming a Self-Advocate Thursday, Decembee 7, 2000 Time: 7:30 am 10:00 am (Poster Session) Sexuality? Intimacy? Meeting the Self Determination-Developing Speakers: Margaret Stout, Sheri Glasser Sensu 6 Needs of Individuals an Organizational Culture Labeled with Severe Disabilities Time: 8:00 am 9:00 am Time: 2:15 pm - 3:15 pm Speaker: Ruth Siegfried Speaker: David Hingsburger 208 Continued on page 31 PAGE 30 TASC-ll alewsileiter, September 2000 SESSIONS
Continued from page 30 Peacemaking, Spirituality and Creative Use of Icebreakers to Community: Honoring the Journey Promote More Effective An Honest Dialogue about Time: 2:45 pm - 5:00 pm Professional Development Embracing the Sexuality of Speakers: Craig A. Michaels, Denise L. Ferrara Time: 1:30 pm 2:30 pm Ondivi-duals with Significant Speaker: Janice Payne Disabilities: Implications for SULLIDSTS LUIKO Future Directions Powerful Teaching: Competent By Time: 3:30 pm 4:30 pm SC IC CHU:41MM All Means - A Framework for Speakers: Wanda J. Blanchett, Pamela Wolfe Successful Education and SCHOOLS, BO Transition Outcomes Personal SPACE: A Violence WHO DOLE` T HUM Time: 2:45 pm 3:45 pm Prevention Program for Women Speaker: Charles Fitzgerald Time: 4:45 pin5:45 pm MBES C11 MGM Speakers: Catriona Johnson, Susan Holland, DEISRUBIRMIS Project WlNning Team: Mary Ann Carmody A Statewide Professional Thursday, December 7, ECM Development Program for all Mday, December 8, 2000 Alternatives to Due Process to Personnel in Inclusive Schools Affect Change for Your Child Time: 4:00 pm 5:00 pm The Forgotten Educational Time: 2:15 pm 3:15 pm Domain: Strategies for Successful Speakers: Toni Striekei; Gail Wilkins, Cathy Speakers: Donna R. Wickham, Nancy Henson Socio-Sexual Programs for Thomas, Peter A. Griggs Individuals with Disabilities Time: 8:00 am10:15 am Including Even Those Who "Don't URRHSEMON Speakers: Pamela Wolfe, Wanda J. Blanchett Wanna" or "Don't Care": Class- Thursday, December 7, 2000 room Structures to Maximize Case Studies in Transition: Cross- SMCORL HIRLUE Learning for All Students Project, Cross-Agency Outcomes Time: 3:30 pm 4:30 pm (for students labeled with severe CRUM NeM Speaker: Linda Rammler disabilities) klay, December 8, ENO Time: 10:30 am 12:45 pm Continuing Inclusion: When Children Views from the Onside: A Student Speakers: Karen Zimb rich, Maria Paiewonsky Have Special COealth Care Needs Who 1-0as Severely Challenged Time: 1:30 pm 2:30 pm Schools Relates His Experiences Negotiating Job Training Sites Speakers: Arlene Lockenwitz, Cynthia in Terms of What 1-gas Gone Right Time: 11:45 am 12:45 pm Levine, Patricia Luce and What Has Gone Wrong With Speakers: Melissa A. Brown, Jayne M. 1-lis Education Stooksbury, Nicki McGowan SWurday, December 9, EOM Time: 4:45 pm 5:45 pm Using a Consensus Panel Speakers: Timothy Gionfriddo, Linda Transition Service Integration Approach to Address Systemic Rammler, Mark Partin Model: A Proven Strategy for Issues Associated with Dual Seamless Transition Diagnosis UGRCMR Time: 2:15 pm 3:15 pm Time: 7:30 am 10:00 am (Poster Session) Speaker: Nicholas J. Certo Speakers: Dina McFalls, Carol Persons DMLORMRT7/ Transitioning to Tomorrow's PUMPRRUMON Hopes and Dreams SPINIULLIRLOTIP Thursday, December 7, ROCO Time: 3:30 pm 4:30 pm Prkday, December 8, ROW Reforming Teacher Education to Speakers: Kay Branz, Jane Doyle, Mary Zubek Exploring the Role of Spirituality Support Inclusion in our Lives Time: 11:45 am 12:45 pm Of You Can Do It On New York City, Time: 12:15 pm 1:15 pm Speakers: Amy G. Dell, Orah Raia Then You Can Do It Anywhere: Speakers: Alan Berger; Maureen Keyes, Post Secondary Transitions and Kathleen Gee Mday, December 8, 2000 Inclusion: Opportunities for More How to Evaluate Models and Faces in New Places Embracing Different Abilities: A Effectiveness of Professional Time: 4:45 pm 5:45 pm Spiritual Path Development Speaker: Gail Ray, Vaulda Kendall-Browne, Time: 1:30 pm 2:30 pm Time: 12:15 pm 1:15 pm Mayra Rodgiguez, Sharon Williams Speakers: Kathryn O'Connell Speaker: Melissa Price 209 Continued on page 32 PAGE 31 Ti 1h1 agewsietter, September 2000 SESSIONS
Continued from page 31 Ve cher Perceptions on Best Developing Seamless Practices in Transition Transition Pi ns Pacilcw, December 8, 2000 Time: 7:30 am 10:00 am (Poster Session) Time: 12:30 pm 1:30 pm Postsecondary Education Options Speakers: Mary Ann Beckman, Laura Speakers: Jayne M. Stooksbury, For All Students Owens Johnson Melissa A. Brown, Melanie Hammond Time: 8:00 am 10:15 am Speaker: Debra Hart Evaluating Entry Level Workers IIRDXOLG SCK.0011. in Supported Employment: Subtleties of Person-Centered The Job Observation and CYLRHSG Transition Planning: Mastery ehavior Scale Through Process and Uhursdcw, December 7, 2000 Time: 7:30 am 10:00 am (Poster Session) Perspectives on Whole Accomplishment Extending the Speakers: Howard Rosenberg, Michael Brady Boundaries of Collaboration School Reform Time: 2:15 pm 3:15 pm Time: 9:15 am 10:15 am Try, nsition Planning from School Speaker: J. Michael Peterson, Richard A. Speakers: Denise L Ferrara, Craig A. to Adult Life: Content Analysis of Villa, Cheryl M. Jorgensen, Cathy Hilde Michaels, Gerardo Delgado, Maria Delgado, Transition Plan Meetings in the Marcos Delgado Province of Quebec Connecting Inclusive Education Time: 7:30 am 10:00 am (Poster Session) Successful Transitions Following to Whole School Reform: Work Speaker: Georgette Goupil, Marc Tasse, in Progress in Massachusetts, Inclusion Nathalie Garcin Time: 12:15 pm - 1:15 pm Florida, and C iifornia Time: 3:30 pm 4:30 pm Speaker: Mark Stuart Getting From Here to There: Higher Education for People with Speakers: Bill Henderson, Diane Ryndak, An Overview of Transition Disabiiities Theresa A. Ward, Douglas Fisher, Nancy Frey, Ric Reardon Assessment: A Person-Centered Time: 10:00 am 11:00 am Approach to Supporting the Speaker: William Picard Student Chokes for Life An Inclusivepproach to Whole School Reform Time: 1:30 pm - 2:30 pm Collaboration Between Public Time: 4:45 pm 5:45 pm Speakers: Mary E Held, Colleen Thoma, Schools and Institutions of Speakers: J. Michael Peterson, Rich Gibson, Steve Baker Higher Education to Facilitate Choice in the Tr nsition Years Kim S. Beloin, Candee Basford, Barbara McKenzie, Nancy Frey, Bill Henderson, School and Agency P. rimers in Time: 10:00 am 11:00 am Cathy Hilde, Cheryl M. Jorgensen, Diane Development of An inclusive Speakers: Caroline Dipipi, Edward Grasso School-To-Work Mentorship Ryndak, Theresa A. Ward, Richard A. Villa, Progr m uying Tr nsition Services from Ric Reardon Time: 2:45 pm - 3:45 pm Adult Service Providers: True Speakers: Peg Lamb, Teri Thompson, Interagency Collaboration Cynthia Wright Time: 11:15 am 12:15 pm Speaker: Laura Owens-Johnson Holding On and Letting Go: Preparing for Transition to Adult Life Time: 4:00 pm 5:00 pm Speakers: Lewis Persons, R. William English, IC)CDCI VASN Elizabeth A. Desousa Sceurcilcw, December 9, 2000 Enhancing Transition Services for Anne Smith Barb Buswell Beth Brennan Students Who are Deaf/Hard of Carol Berrigan Debbie Gilmer Donna Gilles Hearing: Moving Beyond Transitional Approaches Donna Lehr Doug Biklen Joe Wykowski Time: 7:30 am 10:00 am (Poster Session) Linda Rammler Liz Healey Liz Obermayer Speakers: Kourtland R. Koch, Catherine Witty Lou Brown Lynda Atherton Patti Scott Mark Doyle Susie Schaefer Tia Nelis Nancy Zollers
PAGE 32 Ti SH Allewsileffer, September 200© SEPTEMBER 2000
MRE'rm W@RI1RE R@T Oa _=[Iwgz,Q
**K.11Ng MUM** Vowcr_lcu ChoiDelIxDu gDCXD IlDs®® KeetE U.S. Capitol grounds at Upper Senate Park (North side of the Capitol) Washington, DC Come to Washington and join thousands of civil rights advocates to support the Americans with Disabilities Act (ADS,) and the civil rights of ALL Americans.
This fall, the United States Supreme Court will be hearing arguments in the case of Garrett v. University of Alabama, which calls into question the constitutionality of the ADA. This is not just a case about disability rightsit is about the civil rights of all Americans. There are no guarantees in life, and anyone may find themselves facing the injustice of discrimination by an employer or lack of access, because of a disability or even a serious illness such as cancer, asthma, or HIV /AIDS. Without the protections that the ADA provides to guard against injustices in the workplace and community, everyone in America is faced with the threat of losing their civil rights.
The March for Justice will take place .just 35 days before the election of the next President of the United States. The next President is expected to appoint several new Supreme Court Justices during his term. The decisions that the next group of Supreme Court Justices will hand down will have an effect on the civil rights of all Americans for generations to come. We need to make sure that the Presidential candidates are aware that we will be voting with our hearts and minds in favor of justice for all!
Make plans now to be in Washington D.C. on the first Tuesday in Octoberfollowing the opening day of the Supreme Court sessionto join with other advocates for justice from across the country. With our combined voices, we will send a loud and clear message to our elected officials and candidates that we are "VOTING FOR OUR LIVES" in this election.
So, come to Washington DC on Clo9ONDT 0 or participate in a local event and do all you can to let our message be heard.
nEfOC] V®al®MI[DePEIgg Be sure to encourage your family, neighbors, and friends to get out and W©VE 13@l2 QC; EM IRMO on November 7. (PM QOM 2E@DOVEL3ED 40 W@VETD
Founding Sponsors of the 0000//Dgere SuzlikegWeve'0'e1 luno&DvsOuvIIICADOg American Association of People with Disabilities - AAPD ADAPT Consortium for Citizens with Disabilities-CCD Disability Rights Education and Defense Fund DREDF Disability Rights Center Justice for All Leadership Conference on Civil Rights National Association of People with AIDS National Association of Protection and Advocacy SystemsNAPAS National Council on Independent LivingNCIL National Parent Network on DisabilitiesNPND TASH: Disability Advocacy Worldwide
PAGE 332 1 1 TAS11-5 Mews/better, September 2000 SEPTEMBER 2000
Don't Miss ASH's 7irst Ever
[ET Wehern: December 7 anti8 ©MEV 0 Where: ExhObition TASH 2000 AnnuConference We are collecting unique, one-of-a-kind gift items, autographed photos and posters, conference registrations, hotel stays, goodie baskets, books and CDs, consulting services and more items than we can enumerate here to auction off to the highest bidder! TASH is delighted to announce its first Silent Auction Event to help raise funds for the TASH Conference Scholarship Fund.
Proceeds from this Fund assist people with disabilities, parents and other family members to attend future TASH conferences. Donations have been received from TASH chapters around the country, local merchants in the Miami Beach area, sports teams, hotels, individual donors and many others including:
Anchorage MhvErt°Ballgimore OrOoDes 600dd:weer VOdeo Ceraer qor Comma nOV OndusOon, MAP a Unhfesity oq MaOne JusNn and YoshOko Dori .06an4 Foods 0500ff6sh Resaauran (MO'arnfi Beach) Hard Rock Cab (blidam0) JacksonviDge Jaguars RamirnDer & Wood ConsuNanft Reno !Chian Reno-Sparks ConvenNon VrisNors Au.DhoiV Sheraiion Bos4o09 Van Gogh Music Weil. IDOsnev Company o The Wasonian-FORJ Museum
and there will be goodie baskets and other merchandise representing the following states and regions, courtesy of the following TASH chapters:
CaD -TAS o De0aware-VASEI llowa-VA511 M6ssou6-4ASI-1 Vexes -M51 -1 Wash6ngtIon-4A51-1
Donations are coming in daily! Why not join your friends and colleagues and help to ensure that the invaluable information and phenomenal networking opportunities that are cornerstones of TASH annual conferences will be available to that many more people in the future? Donate a silent auction item today!
For more information, or to obtain a donation form, contact Priscilla Newton, Director of Marketing, at 410-828-8274, ext. 102 or send an e-mail to [email protected] Donors will receive special recognition in the official conference program and on TASH's web site.
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*Please consult appropriate IRS Guidelines
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PAGE 34 TA SC-0 agewsietter, September 2000 SEPTE[MR 2000
aring teEntireFamib to te coneyecei V V V
This year there are a variety of programs available at the registration form appears on the next page. If you are conference for kids of all ages! Of course, the location is interested in information about this program please check beachfront, has an incredible pool, and has direct access toa the box on the registration form or call 1-800-482-8274. boardwalk that stretches for miles along Miami Beach. In addition, the Fontainebleau has an extensive Resort TASH will be operating the highly successful and fun Activities Program, for children ages 5-12 and a teens 13- childcare program for children ages 1 month13 years in 17, who are able to swim without the assistance of a cooperation with KiddieCorp as we have done in years past. floatation device. Rates vary with activities. For more
The charge is $2.00 per hour per child, and there is a 3 information contact the Kid's Corner at the Hilton, hour minimum block. Pre-registration is required. The (305)538-2000 x 3445
PAGE 35 2 3 it Rgewsletter, September 2000 SEPVEM ER 2000
(I, l'ASH-11 CM Ed CRQeRe,4z+fisl:oz/flon Fe:cm
Please fill out this form and return to TASH at the address listed below, NO LATER THAN 11/15/00. MAKE CHECKS PAYABLE TO TASH. A confirmation letter with release forms will be sent to you once payment is received. Please send in a paragraph with this form about your childs interest and needs. Please indicate the age each child will be on December 1, 2000.
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 with a consecutive three hour minimum period required.
Day Hours of Specific Hours of Number of TOTAL Operation Care Requested Children Per Day
Wednesday 9:00-4:30 $ 12/6/00
Thursday 7:45-5:45 $ 12/7/00
Friday 7:45-5:45 $ 12/8/00
Saturday 7:45 -1:00 $ 12/9/00 Non-Refundable Reg. Fee $5.00 GRAND TOTAL $
Payment: *Check Visa Mastercard Discover Card# Exp. Date
The Child(ren) named above will be released ONLY to 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 completedRegistration Form and FULL PAYMENT, payable in U.S. Funds, NO LATER THAN 11/15/00to TASH 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204.
For Office Use Only Amt. Recvd. Amt. Due On Timeline In Comp.
PAGE 36 214 Alewsietter, September 2000 2000 Conference Registration Form (Esto forma es disponible en espafiol por contacto 1-800-482-TASH (8274) or 410-828-8274 or [email protected]) Instructions for filling out this form: a) C..) = 07-'?;A.' 4 1.Fill out one form for each person attending TASH Office Use Only 0J parvatvee_ele 2.Fill out all information requested on the form =:-.. Org Make Checks Payable to: TASH Cust
co) Mail: TASH, 29 W. Susquehanna Avenue, @F Suite 210, Baltimore MD 21204 Reg =Fo Fax: (410) 828-6706 c:, ' Questions? Call: 1-800-482-TASH (8274) or 410-828-8274 Init e4= Miami Beach,Florida December 6-9th Email: [email protected]: www.tash.org TDD: (410) 828-1306 Federal Id # 51-0160220 ConferenceParticipant: . First Name: Last Name : Preferred BadgeName: Organization: Street Address: City / State: Postal Code: Country This addressis [ ] home [ ] work [] school [ ] other Work Phone: Home Phone: Fax: E mail: Please list yourinterest areas or occupation (for example: advocate, administrator, teacher, etc..)
Billing Address: Billing Contact(Name): (Phone): Accessibility and Accommodations
You are responsible to make yourown reservations forhotel accommodations. The information on this form applies only to participation in the conferencesessions and activities. Pleasemake all requests such as interpreting and materials in Braille by November 10th to ensure fulfillmentof your request.Any requests made after that date cannot be guaranteed.
Sign Language InterpreterPlease indicate dates andtimes needed: 0 S esion albedrio ser ofrecidocon Espafiol interpretacion.Seria interesado en mas informacion en este servicio. 0 Please list ADA accommodationneeds (Large print, Brailleetc.) 0 P lease specify your dietaryneeds: Child Care/Youth Activities(Note: you must fill out an application in advance to register. Space is limited) 0 Roommate Referral Program Registration Costs (must be drawn on a U.S. Bank) Registration Category TASH International Members [ ] Individual Registrant $229 Current TASH Member# [ ] Family Member of a Person with a Disability $ 69 [ ] Person with a disability $ 69 (*Personal assistants mustregister at the same time [] Personal Assistant * $ 50 as individual for whomthey are providing support to [] Student $169 attend conference activities) [] One day onlyThurs Fri Sat $139 Registration Category TASH Chapter Only or Non-Members [ ] Individual Registrant $359 [ ] Family Member of a Person with a Disability $145 [ ] Person with a disability $145 [ ] Personal Assistant (*see note above) $ 50 [ ] Student $ 259 [ ] One day onlyThurs Fri Sat $199 1. Enter Registration Cost $ 9 i PAGE 37 ° 7Ti1S11-0 Alewsletter, September 2000 _ Registration Discounts Root, bird Registrations Subtract $20 per registrant for early (received with payment by September 30, 2000) bird and team discount if applicable. Team Discounts: o Groups of 5 or more registering for full conference (all registrations must be sent in at the same time) o A direct support staff is registering with a self-advocate o Two or more members of the same school team are registering together (ie: a special educator and a regular 2. Subtract Discount Here $ - educator, or a regular educator and a paraeducator) Round %Me Networking Luncheon Thursday '0:00-2: '0 5 PRA 3. Add Luncheon Fee Here $ (you must purchase a ticket in advance, and please be sure to fill out any $10.00 per person special diet requests if applicable) After November 17, 2000 registrations will be on-site only and a $40.00 late fee must added. To ensure that your registration process goes as smooth as possible and to save money, we encourage you to register early. If you do register on-site you must bring this form 4. Enter Late Fee Here $ and method of payment with you at time of registration. (if applicable)
Enter Total Conference Registration Here (Total from 1-4 above) $
Pre-Conference Workshops AM-4:00G J (registrationfiD, Cooaddition Zak; Gaii32GGico NA Wednesday, [31332taba? Cal
See list of workshops on page 3 of the brochure 0TASH Member $55.00 First Choice Tech # o Non-Member $85.00 Second Choice Tech # 0 Individual w/a $40.00 0Special Symposium $65.00 for TASH Members $95.00 for non-members disability/ Family 0I plan to attend the TASH Chapter Leadership Day Member of a person with a disability
Enter Pre-Conference Fee Here $ CIIYes I would like to make a donation to support self-advocates/parents to attend the conference $5____ $10 $15 TASH MEMBERSHIP: International &International Chapter Only DIam renewing my membership now # Chapter Only 1:1 I am becoming a member now General $103 $88 $33 If you are joining with 3 or more people from the Associate Membership same agency/organization/school take $20 off Annual income less than each person's applicable rate (must be in $25,000 or if full membership $60 $45 $20 the same envelope)! presents a financial hardship New and Renewing Members please select Family Discount membership type Additional members joining $51.50 $44 $16.50 from the same household Organizational $230 $200 $70 Lifetime $1000 N/A N/A Add $10.00 for postage costs for members in Canada and $25.00 for members outside the U.S. and Canada $ Enter Total TASH Membership Fee Here $ TOTAL AMOUNT ENCLOSED: $ 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 all requests for refunds that are received before Nov 1, 2000. No refunds will be given for cancellations after that date. $25.00 fee for returned checks or unauthorized charges. CICheck Enclosed Purchase Order / State Voucher no.
0Visa MasterCardCIDiscover Name on Card: Card Number: Signature: L,-, 1-7rExp. Date: SEPTEMBER 2000
Ourt6ankstotbie 2000conference Reviewers wbo oonate countless hours reviewing proposals and formulating tble session sc6eoula Wecoulan't oo it without you!
Sue Dotson Donna Lehr Diane Ryndak Mary Hayden Liz Healey June Downing Debbie Gilmer Gail McGregor Janice Payne Don Kincaide Carol Quirk Joanne Eichenger Alan Factor Carol Tashie Rick Amado Michael Bailey Cheryl Jorgensen Tim Knoster Pat Mirenda Anne Smith Rob O'Neill Marti Snell Rich Villa Beverly Rainforth Don Cardinal Doug Fisher Linda Bambara Joe Wykowski Rebecca Salon Fred Spooner John Lian Michael Peterson Craig Kennedy Patti Scott Doug Fisher Liz Obermayer Lisa Sonnenborn Nancy Frey Bonnie Shoultz Leigh Ann Davis Cindy Burkhour Wanda Blanchett Elizabeth Erwin Sue Fleming Maureen Keyes Valerie Lava Tom McVeigh Colleen Capper Mike Callahan Leonore Pellegrino Alan Berger Cary Griffin Amy Staples Donna Lehr John Butterworth Lynda Baumgard Jill Green Barb Buswell John Lian Linda Rammier Lynda Atherton Susie Schaefer Debbie Gilmer Dohn Hoyle ichael Giangreco Pat Rogan Mayer Shevin Anna Lou Pickett Janis Chadsey
PAGE 39 TASH Mews letter, September 2000 TASH EWSLETTE'R
Policy Statement Priscilla Newton,Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board Kathy Boundy, Ex-Officio diversity and quality of life for children and adults with disabilities. Liz Healey, President Bob KaJha Items in this Newsletter do not necessarily reflect attitudes held by individual Donna Gilles, Vice President Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Bihlen, Chair of the Executive Committee Debra Kunz torial judgement in selection of materials. Jorge Pineda, Secretary Ming-Gon John Lian, Ex-Officio All contributors and advertisers are asked to abide by the TASH policy on the Tia Nelis use of people-first language that emphasizes the humanity of people with dis- Joe Wyhowshi, Treasurer abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Jachi Anderson Barbara Ransom Terms such as "people with mental retardation," "children with autism," and "in- Michael Auberger Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Linda Bambara, Ex-Officio Jacqueline Thousand ment for a product or service does not imply TASH endorsement. Wanda Blanchett
1
Name: Address: City/State/Zip: Telephone: ( Fax: ( ) E-mail: Is the above your work address homeaddress other
Please Check Appropriate Categories () Educator/Teacher (K-12) ()Related Services Provider (not more than three): () Government ()Self-Advocate () Administrator/Adult Services () Legal Services Provider ()Social Worker () Administrator/Education () Occupational/Physical Therapist ()Speech/Language Pathologist () Administrator/Other () Parent/Family Member ()Special Education Teacher/Support () Adult Service Provider/Staff () Personal Assistant Specialist () Advocate/Friend () Professional/Public Policy Advocate ()Staff Development/Trainer () Behavior Specialist () Professor/Instructor-College/University ()Student () Case Manager () Psychologist ()Supported Employment () Early Childhood Services () Regular Education Teacher/Administrator ()Other
ZICRADO Please notify TASH of your new address. () Mastercard ( ) Visa ( ) Discover Card Number General Membership (individual) $103* Expiration Date Organization/Subscription (all organizations, schools, libraries, Signature universities, etc. must use this category) $230* Associate Membership (for people having an annual household () I would like to spread my payments out. Enclose 1/3 and you will income of $25,000 or less, and for whom payment of the full fee receive 2 additional invoices at monthly intervals. would present a financial hardship) $60* Lifetime Member $1,000 Add $10 for postage costs for members in Canada and $25 for *These prices entitle you to both International and Chapter memberships for members outside the U.S. and Canada. International or Chapter only prices, please call us at 1-800-482-8274. Group Discount Rate (When three or more individuals from the same organization join as International/Chapter or International Only Please make check payable to:TASH members at the same time Save $20 per membership!) Address: 29 W. Susquehanna Avenue, Suite 210 Baltimore, MD 21204 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. Telephone:410/828-8274 Fax: 410/828-6706 bank. Add a $20 processing fee if check is not drawn on a U.S. bank. If you would like to charge your membership, please fill in the necessary information in the next column. L
OL-u-NOM NON-PROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE Suite 210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274 PERMIT NO. 187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: www.tash.org
Address Service Requested
SEPTEMBER 2000 218 PRINTED IN THE U.S.A. I I_
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I I i Inside this issue: Augmentative/Alternative Communications in Guatemala Growing Up with a Disability in IcelandEarly Child- hood Care and Development Worldwide OCTOBER 2000
TABLE OF CONTENTS
From the Executive Director Page 4 TASH wishes to acknowledge the 2000 TASH Conference Update Page 5 Providing AAC Systems in Guatemala Page 8 generous support of our newest Me and My Assistive Technology Page 11 International Human Rights Law Page 16 Growing Up With a Disability in lifetime members Iceland Page 19 Insights on Implementing Positive Behavior Supports in Schools Page 23 Care of Infants and Young Children with Community Developmental Services - Barre, Vermont Disabilities Worldwide Page 26 Ming-Gon John Ilan - Poklulam, Hong Kong Conference Committee Meeting Schedule Page 29 Elizabeth Obermayer - Towson, Maryland Universal Primary Education in Robin Wood - Wallingford, Connecticut Uganda Page 30
Lifetime membership entitles you to full international and TASH (formerly The Association for chapter member benefits for your lifetime.The cost can be Persons with Severe Handicaps) is an remitted over several monthly payments. international advocacy association of people with disabilities, their family members, other advocates and people If you are interested in becoming a lifetime member of TASH, who work in the disability field. TASH contact Rose Holsey at 410-828-8274, ext. 100. actively promotes the full inclusion and participation of persons with disabili- Please see page 3 of this Newsletter for new lifetime member rate. ties in all aspects of life.To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. Whom Do I Contact?? MISSION STATEMENT For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] 0111SFI For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 Stretching the boundaries of what is possible; TASH, Ext. 103, e-mail:[email protected] For questions about the 2000 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 and Member Services, (410) 828-TASH, Ext. Forging new alliances that embrace diversity; 100 or [email protected] Advocating for opportunities and rights; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Eradicating injustices and inequities; For information on marketing and promotions, permission and reprints, or newsletter submissions and advertising, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, 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; The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format. Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter; 29 W Susquehanna Avenue, Promoting excellence in services. 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 40 TASH Newsletter, October 2000 OCTOBER 2000
Youels ASSwisetteter cossnet 1. Go to igive.com or greatergood.com on the web. 2. Follow the simple instructions to register as a new DON'T DELAY! member. Before shopping, make sure to identify TASH as Become a lifetime the organization you wish to member of TASH support. Shop online 3. Click on any of the today! hundreds of websites to shop through as you normally would! A new rate goes into Up to 15% of your total pur- effect January 1, 2001! igive.com or chases will be donated to TASH. Have you been considering becom- greatergood.com ing a lifetime member of TASH, but Other great deals available to haven't gotten around to doing so? you as a member of The price of a TASH Lifetime TODAY! igive.com and Membership has not increased since greatergood.com include the inception of this membership We've made it convenient and Discounts from select stores option almost twenty years ago. simple for you to shop online and Lifetime memberships are currently support the work of TASH at the Free shipping offers priced at $1,000. This cost can be same time. Your purchases will cost spread over multiple payments if no more but TASH will benefit! An entire online mall filled you choose. Once you are a with brand name mer- lifetime member, you never need By shopping through igive.com or chants ready to serve you! to pay TASH membership dues greatergood.com, two popular again. Lifetime members are online shopping services that recognized in the TASH Newsletter represent hundreds of retailers such and in each year's conference as Amazon.com, Barnes & Noble, program. The Gap, Disney Store, Gift Shop at igive.com or Baskets.com, J. Crew, Nordstrom, greatergood.com 24 hours a The TASH Executive Board has Petsmart, J.C. Penney and scores day, 7 days a week! Re- approved a price increase for of others, you can have the ease member to go to igive.com Lifetime Memberships from the and savings that come with shop- current rate of $1,000 to $1,300, ping online, and the knowledge or greatergood.com first to effective January 1, 2001. We hope that up to15% of every purchase access your merchant of you will take advantage of the you make will be donated to TASH! choice from these sites. opportunity to become a Lifetime Member of TASH at the current Best of all, it's FREE to shop via Need help? Questions? $1,000 rate. You can become a igive.com and greatergood.com! lifetime member by phone (call 1- Your purchases will cost exactly Call us at 1-800-482-8274, 800- 482 -8274, ext. 0) or on our web what they would have if you had ext. 106 or send an e- site (www.tash.org). To find out gone directly to the merchant's more or to arrange to pay for your web site. mail to [email protected] membership over several payments, call Rose Holsey at 1-800-482-8274, HOW DO I SIGN UP? Supporting TASH is just a ext. 100 or send an e-mail to click away and as easy [email protected]. It's as easy as 1, 2, 3! as shopping online!
PAGE TASH Newsletter, October 2000 FROM THE EXECUTIVE DIRECTOR
Medicaid and State Operations repre- tional bias and giving people real choices sented the Health Care Financing and real options in the community so Administration. they are not forced into nursing homes or institutions. The President opened the meeting by announcing a new rule that had just been Mike Auberger addressed the President posted for a 60 day comment period and next and spoke about the many things would be finalized before the end of the that could be done administratively to Administration. This rule would expand begin to address the institutional bias in states' flexibility in disregarding income the Medicaid program. Auberger and resources for purposes of Medicaid encouraged the President to act on as eligibility determinations. This rule many of these administrative changes as Prom 'Am Enoeuaive DEveaftv change will promote the use of home and possible before leaving office. Debbie BY NANCY WEISS community-based services and supports. Kaplan emphasized the importance of Chris Jennings estimated that this personal assistance services and the need enhanced Medicaid state option would to promote some of the best practices T&SIBI Meets with Presidercat provide an additional $960 million in that are being demonstrated at the state Cthatomi -- ?resell= our Conncerrin.s Medicaid benefits over five years. level. Related to fedlere Disability Policy The President then updated the group on I addressed the President after Ms. the current state of budget negotiations Kaplan. I described TASH and told the and stated his continuing hope that this President that our legislative priorities On Friday, October 27th, a small administration will be able to get the included passage of MiCASSA and group of disability advocates and Family Opportunity Act passed and $50 enforcement of IDEA: An important I met with President Clinton to million allocated for systems change point that I stressed was that enforcement discuss measures that Clinton could take grants for Olmstead implementation. Theof this important bill was often left in his final days in office to improve purpose of these grants would be to unfairly on the shoulders of parents. I services in the community and reverse conduct intensive outreach efforts to also emphasized the importance of the the institutional bias of federal long-term educate people with disabilities about the Family Opportunity Act to give families care policy. home and community-based options with children with disabilities the ability currently available to them; create new to work and maintain critical health Also in attendance were Justin Dart, Jr., one-stop centers that streamline applica- coverage for their children. I stated that of Justice for All, Mike Auberger and tion and eligibility processes for home parents are often in the position of Barbara Toomer of ADAPT, Mike Oxford and community-based services and having to refuse jobs or promotions to and James Billy from the National supports; and identify, develop, and assure that their income does not make Council on Independent Living (NCIL), implement strategies to modify state them ineligible to receive Medicaid Debbie Kaplan from the World Institute policy that results in the unnecessary coverage for their child with a disability, on Disability, Bobby Silverstein of the institutionalization of people with and are sometimes forced to place their George Washington University School of disabilities. As a condition of receiving children in institutions because no other Public Health, Andy Imparato from funds, states would actively involve options exist to assure critical health AAPD, and Paul Marchand representing people with disabilities and their families care.I stressed that families are not The Arc and Council for Citizens with in the development of programs enabling looking for a handout, but rather for the Disabilities (CCD). people with disabilities to choose where opportunity to buy into Medicaid as their they want to live and receive supports. salaries increase. In attendance from the White House, in To the delight of participants, Clinton addition to the President, were: Chief of referred to these systems change grants asTASH's important message that I commu- Staff John Podesta; Mary Beth Cahill, "MiCASSA grants." nicated to the President is that people Assistant to the President and Director of with severe developmental disabilities no Public Liaison; Chris Jennings, Deputy Justin Dart opened the meeting on more want to, or need to live in institu- Assistant to the President for Health behalf of the advocates, thanking the tions than does anyone with a physical Policy; and Jonathan Young, Associate President for his ongoing leadership in disability or than does anyone else, Director for Disability Outreach. Bob support of the,disability community and including all non-disabled individuals as Williams, Deputy Assistant Secretary for for taking the time to meet with disabilitythey age. I told the President that it was Disability, Aging, and Long-Term Care advocates at this critical juncture in the not just the people sitting around the Policy represented the Department of legislative process. He emphasized the table that day who were concerned about Health and Human services. Tim importance of addressing the institu- Westmoreland, Director of the Center for Continued on page 14 e)r) PAGE 4 TASH Newsletter, October 2000 2000 TASH ANNUAL CONFERENCE
strengthening or re-energizing local showers, which equates to one per 100 chapters and enabling people to attend rooms in the hotel. Current rooms the conference for the first time (some of termed accessible will be evaluated and whom could not previously do so equipped with controls that meet code because of travel costs). and are accessible to all.
What we did not foresee was the impact oThe elevators will be reconfigured to we would have on the destinations. increase the amount of time that doors Ottt6* TASH brings over $500,000 in revenue remain open. 0\46. through rooms sales, food and beverage costs, and outlet sales (in the giftshops, O All lifts will be self-service and and restaurants) to the host city. staffed by security to ensure smooth and You Conference Revenue Dollars Revenue speaks, and we have been using independent operation. at Work it to pursue quite interesting and BY DENISE MARSHALL productive conversations! O TASH members and staff will Director of Meetings and Information provide consultation as renovation plans Resources, TASH Here are a few examples. Last year, after unfold to ensure that the renovations a long absence, we held the 1999 meet and exceed code to ensure maxi- There are many reasons why convention in Chicago. Attendees found mum access. attendees come to TASH confer- that a hotel which seemed just fine in ences: dedicated members who 1993 was not up to the 2000 standards This year in Miami Beach we will be at never miss, knowledge-seekers, value- we have come to expect and demand to the Fontainebleau Hilton Hotel and based activists, social networkers, and of ensure equal access for all. A conference Towers. Our presence at this hotel has course, those who want to mix business the size of ours needs to book our already had a demonstrable impact. The with pleasure and visit the location! On convention many years in advance, and site visit earlier this year revealed that the surface it is easy to focus on the event we had already rebooked The Chicago the Club Tropigala did not have a itself as the end to the means, but TASH Hilton and Towers for 2003. In the spirit wheelchair accessible entrance. At our members know that it is really just a of TASH, rather than despairing we request, the hotel has already completed starting point for rejuvenating personal looked at this as an opportunity. Several construction for an entrance to this energy, individual and professional TASH members met with hotel represen- popular nightclub. A team of TASH staff networking, for giving folks the tools tatives on-site, and Nancy Weiss, TASH's and members will be conducting training they need to cultivate social change. Few Executive Director, and I worked with with hotel staff prior to the conference to realize though, there is another outcome the general manager of that property in ensure excellent service. In addition, we going on behind the scenes: the impact the months that followed. Here are some have been working with The City of registration and accommodation dollars of the major items that the Chicago Miami Beach Barrier-Free Environmental have in enabling TASH to raise con- Hilton and Towers has contractually Committee to raise awareness and ensure sciousness and make tangible change in agreed to do prior to the conference in transportation and beach access for the cities and at the hotel properties at 2003: individuals with disabilities. which we hold our events. O The Northwest Exhibit Hall will be The rest of society is catching up with renovated, ensuring that the slope of the what we already know: travelers with TAS1111 annual conferevace brings ramp is one foot per inch of rise, as disabilities are blazing new trails and, over half a million dollars in required under the Americans with according to the Wall Street Journal, are revenue through rooms sales, food Disabilities Act. at the forefront of the next tourism and beverage costs, tame] outlet sales boom. The December 15, 1999 issue of (in the giftshops, and restanarants) O In addition, the Northwest Hall will the Journal contained the following to the Inost city. be reconstructed to provide additional headline, "People with Disabilities Are meeting space, so that we will be able to Next Consumer Niche." The article use this space for breakout sessions, discusses how mainstream companies, Five years ago TASH started to move the rather than be forced to use the smaller from financial services to cell phone conference to different locations rooms in an isolated area on the 4th and makers, are going beyond what is throughout the United States, rather than 5th floors of the hotel. mandated by law and rapidly tailoring staying with a rotation of Chicago, products to the disability market. There Washington, D.C., and San Francisco O Some sleeping rooms will be are currently 54 million Americans with exclusively. Overall, this change has had redesigned to allow for an adequate number of accessible rooms with roll-in a positive impact on the association by Continued on page 6 PAGE5 0 TASK Newsletter, October 2000 ta 2000 TASH ANNUAL CONFERENCE
Your Conference Revenue Dollars at Work Don't Miss an Opportunity for Chapter Continued from page 5 Leaders to Network and Plan for the Future! disabilities. Of adults with disabilities, 73% are heads of household and 58% In addition to the TASH Techs that are being held on Wednesday, December 6th, own their own homes. The aggregate TASH is holding the Annual Chapter Leadership Day - An opportunity for chapter income of Americans with disabilities is officers and representatives to share ideas, concerns and strategies.There is no now at $796 billion and will exceed $1 charge for this eves trillion by 2001. In 1995, people with disabilities spent $81.7 billion on travel, This event has been held on the Wednesday before the conference, in one form or not including the expenditures of their another, for the past five years and has been critical in strengthening relationships family members and other travel com- between the International TASH Board, Central Office and Chapter Leaders. The panions. day includes opportunities for skill building, informal sharing of ideas and plan- ning for the future. The Chapter Leadership Day has helped new chapters to In keeping with our mission, we will take identify directions for themselves and has assisted established chapters to influence every opportunity and use all measures policy and direction within their states. Whether you represent a thriving, a newly of leverage to eliminate obstacles, forge established, or a struggling chapter, the 2000 Chapter Leadership Day is an event new alliances, and promote excellence in you won't want to miss! and equal access to service. All current Chapter officers will receive invitations to this exciting day of planning For those who may be wondering, here and collaboration. If you are interested in starting a chapter and would like to are the dates and locations of the TASH participate in the 2000 Chapter Leadership Day on December 6th, call Nancy Conferences that have been scheduled in Weiss at 410-828-8274, ext. 101 or e-mail: [email protected] upcoming years:
2001 Anaheim, December 5-8th 2002- Boston, December 10-13th 2003Chicago, December 9-11th Congratulations to the following Many members have requested that we go back to scheduling conferences earlier newly-elected members of the in the year again (November), and try to reduce hotel rates. In order to accomplish this in the current booming travel TASH Executive Board! economy, we need to look at sites that are not considered first tier cities. Current cities under consideration are Reno, Orlando, Toronto, Montreal, Minneapo- June Downing lis, Baltimore, Anchorage, and Milwau- kee. Kathy Gee
If you have feedback about ways we can Marcie Roth have impact in the cities we visit, or on Dick Sobsey site selection, please email me at [email protected] or call 410-828-8274 Lu Zeph x103.
New board members will be installed at the upcoming 2000 TASH Annual Conference in Miami Beach, Florida.
PAGE 6 2,.tTASH Newsletter, October 2000 2000 TASH ANNUAL CONFERENCE
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at Join others from around the world to network at the Depending on your definition of spirituality, TASH Roundtable is a spiritual experience. For the last two years Luncheon TASH members and presenters have explored the ON THE GRAND LAWN meaning of "a spiritual life" in relation to our cul- Thursday December Th from 1:00-2:15 PM. ture and disability. We have covered topics as diverse as access to places of worship, spirituality Enjoy the fresh air and breath-taking view of the and person centered planning, and spirituality and pool for lunch while sharing stimulating discussions on a topic that interests you. leadership. Tables will be labeled with suggested topics for This year we want to continue the dialogue by discussion, and/or questions to stimulate thought. having an Open Forum: Exploring the Role of If you have a specific topic that you would like to Spirituality in Our Lives (Friday, 12:15-1:15 PM, Le discuss during lunch, please fax the following information, or include with your registration form Mans) in addition to individual sessions. We would when you send it in the mail. like anyone interested in exploring this issue to join us. We will also meet separately to discuss the I would like to participate in a discussion on: possibility of forming a committee.
I am willing to facilitate this discussion We look forward to seeing you. I suggest the following person to facilitate this Maureen Keyes, Kathy McConnell and discussion Alan Berger Participation in this event is only $10.00, which includes a delicious boxed lunch. Be sure to register when you complete your conference registration form. Questions? Contact Kelly Nelson at 410-828-8274 x 105 or email [email protected]. You can email your topic suggestions; fax them to 410-828-6706; or send a copy of this ad with your registration form! Our thanks to Paul H. Brookes Publishing Com- pany for co-sponsoring the roundtable luncheon.
----. PAGE 7 0 0r TASH Newsletter, October 2000 AAC USE IN GUATEMALAN ORPHANAGES
alternative communication systems This research perspective fits with an (Duncan, 2000.) action research model enabling a researcher to study situations while This work was accomplished within a simultaneously providing support larger effort to assist individuals in through everyday practice (Meyer, Park, Antigua, Guatemala through a U.S.-based Grenot-Scheyer, Schwartz & Harry, medical humanitarian mission known as 1998.) "Faith in Practice." Physicians associated -,fireme:::::11:zmurvolv with this group provide free medical care While these questions were at the to Mayan villagers at a facility that is forefront of my research agenda, I also used as both a hospital and an orphan- wanted to provide children with the Providing AAC Systems for age. Individuals with disabilities live in immediate benefit of AAC technology Children in a Guatemalan this facility and are grouped by age and and support. There were communica- Orphanage: disability. The American medical tion systems that I could provide on the contingent expressed concern about the spot, enabling individuals to communi- How do we help living conditions of these individuals and cate with others (Duncan, 2000). Simple others in culturally invited me to join them to offer any letter boards constructed from paper assistance. Not knowing what I would with letters and pictures were made responsive ways? discover, I agreed to visit Antigua. within minutes. BY JANET M. DUNCAN, Ph.D. My concern at the outset of this action research project focused on providing Recent reports of abuse and neglect low cost AAC systems in a culturally We need a coherent set of of individuals with disabilities in responsive way (Enders, 1999.) The strategies aimed at helping the international human rights example of being asked for technological individuals in specific settings and disability communities (Rosenthal, assistance provided by Enders (1999) and offering assistance to in the article, "What is culturally appro- 1999), coupled with the recognition that communities and governments. we should provide support to other priate? Finding a middle way," (TASH countries in culturally appropriate ways Newsletter, October 1999) describes the At the same time, we must (Enders, 1999), struck a chord with me circumstance in which I found myself. I respect different cultural in relation to my recent research in did not want to impose my expectations understandings of disability, Guatemala (Duncan, 2000). I am on others without understanding the education and human rights. concerned about communication rights social context of this setting. As a North for all as a basic human right (National American with a general interest in Joint Committee for the Communicative disability rights and a specific interest in Needs of Persons with Severe Disabilities, communication rights for individuals 1992.) Specifically, how do we help with significant disabilities, I was eager toThe limitations of this preliminary study individuals with disabilities who are learn more about the needs of these are significant. The largest hurdle I faced living in less than ideal conditions when residents. was working through a translator to a framework for understanding speak with workers and children in the disability rights may not exist? As a qualitative researcher I also wanted orphanage. Nevertheless, I found people to learn about the perspectives of were eager to talk to me and expressed This article focuses on recent research I the individuals who live and work in this interest in my work. I was definitely not conducted in a Guatemalan orphanage facility (Bogdan & Biklen, 1992). seen as an insider, though and it would for children with disabilities. The Specific questions I had in mind were: take considerable effort and time to be individuals living in this facility were O how do residents of this facility see fully accepted in this setting. abandoned by their family, typically at themselves?; birth or shortly thereafter, and would O how do workers see the residents?; Another factor was the limited amount be considered to have significant disabili- o what are the ways in which of time I spent in the setting (two ties by North American standards. I residents communicate?; and, weeks.) The residents and workers were am concerned about the children who do O how is disability viewed in this used to the American medical personnel not have a way of communicating with particular facet of Guatemalan culture? coming and going, and viewed me as others in this setting, and I attempted to Understanding the nature of the setting part of the rotating team of professionals evaluate their needs and provide and the perspectives of the individuals in who would likely be coming back them with low-technology augmentative/ this setting was a major focus. Continued on page 9 PAGE 8 TASH Newsletter, October 2000 AAC USE IN GUATEMALAN ORPHANAGES
Providing AAC Systems for Children were not educated in a formal sense as we would expect institutions Children in a Guatemalan to provide a basic level of education to My work in Guatemala Orphanage residents. Very few decorations, has just begun and the Continued from page 8 toys, or educational materials were research questions are available. Yet workers sang to the mounting. I welcome children, spoke lovingly to them, and any dialogue with related to me that they were doing individuals who have someday. Indeed, many of the Faith in "God's work" by caring for them. Other similar interests and Practice workers return annually, with examples of caring include special who wish to develop more frequent visits for some. I intend hair adornments for the female residents models of advocacy for to return as well to continue this study. individuals worldwide. and home-cooked treats for all to In spite of the limitations of my work, I share. Many of the children were was able to assess several children and referred to with terms of endearment by offer them low-tech AAC communica- the workers. tion systems (Duncan, 2000.) nity with civil war in recent memory, While the workers may love the children, it seemed understandable to me. Several compelling issues remain for me basic medical care was extremely as I think about our efforts to assist limited. Workers expected many of the A question about community living others internationally. Specifically, how children to die. A special room desig- arises, too. How would we suggest do we support individuals with a nated for malnourished children was options for community living in this sensitivity to other cultures? In the established for the ones who failed to context? Finding original communities Guatemalan case, I need to understand thrive.It seemed to me that the primary and family members may be difficult. the situation in terms of the recent civil reason for their failure to thrive was the The administrator of the facility told me war with a deep respect for family losses, inability to feed the children due to their that family members brought their loved separations, and a basic distrust of contorted bodies and lack of positioning ones to this facility in the hope that they anything related to the government. techniques. No physical therapy would be safe and cared for, much like Religion plays an important role in this sessions or equipment were provided. A the hopes of family members in our society, with the predominant view that few standard wheelchairs donated earlier days of institutionalization. individuals with disabilities are, "chil- through the medical group were shared Living in this facility is viewed as a dren of God." The individuals in this among all the residents. privilege. How would we describe the setting are housed in a religious affiliated benefits of returning to war-torn, institution that is believed to provide When I asked workers about the activi- impoverished communities? Many sanctuary for the residents and workers. ties of the older residents, they Mayan villagers do not own land and It is a "House of God." They did not described vocational opportunities exist purely on a subsistence farming view the facility as an institution, with all within the facility for those who were basis through squatters' rights. Able- that means in our North American physically capable of working. Examples bodied children are put to work as soon context. Yet, I viewed the setting as of work included washing and as possible to provide an income for the such. The bougainvilla-filled courtyards polishing the tile floors, cleaning the family. and verandas, while beautiful, were bathroom facilities and "wards", analagous to our notion of a "day room." assisting with personal care of other Recently others have described shocking The workers still line up all the children residents, and kitchen and laundry living conditions of facilities in other in rows on the floor and bird-fed them duties. The workers explained that countries (Rosenthal,1999.) This is a similar to the conditions at St. Nicholas residents would be trained one-on-one grave concern for TASH members as we described by Rosemary Crossley and until the job was performed satisfactorily. struggle to advocate for people with Anne MacDonald (1984.) This training seemed analagous to disabilities worldwide. The efforts of vocational training with natural supports organizations such as Mental Disability and job coaching models common in Rights International (MDRI) and Am- our communities. All of the work was nesty International should be a major performed inside, however, with no focus for TASH. It is of particular opportunity for residents to leave the concern when countries seek to build facility. When questioned about this new facilities in an effort to be "modern" workers responded, "Why would anyone and supportive of people with disabili- want to leave God's house? It is safer here." Again, in the context of a commu- Continued on page 10 PAGE 9 TASH Newsletter, October 2000 2.27 AAC USE IN GUATEMALAN ORPHANAGES
Providing AAC Systems for Duncan may also be reached by e-mail at
PAGE 10 TASH Newsletter, October 2000 ASSISTIVE TECHNOLOGY
Me and My me from banging. I liked it.Finally, my A.T. is the mother slipped a soft squeaker toy under latest publica- my head as I began to drop it for a really tion by Bersani, good bang. SQUEAK! I was cured. who has spent Me & My Assistive the last several My parents pushed the buttons on the Technology: High School years assisting tape player until grew I strong enough to authors with do it myself. The day I voiced over a Students Write About disabilities to number of my brother's cassettes was the their Assistive Technology find their voice day all of the general family cassettes and publish mysteriously disappeared. They didn't BY HANK BERSANI their insights. return until I could be trusted not to put Hank Bersani motor sounds or sing-alongs in the may be reached middle of a story. via e-mail at
Continued on page 12 PAGE 11 r) TASH Newsletter, October 2000 ASSISTIVE TECHNOLOGY
Me & My Assistive kindergarten but it wasn't the best for me.plan to finish high school and then I'll Technology The ambient noise made hearing the begin college courses through the Continued from page 11 teacher hard. My clearest memories of computer because I'm slow moving and kindergarten are the following: traveling makes the days too long sometimes. Memory #1: Hearing my personal compatible computer with a variety of attendant tell me to imagine the shape of I try to stay in touch with the newest in speech output programs, screenreaders, T as the teacher wrote it on the board computer use and programming by (Jaws For Windows and Jaws For DOS), way up in the front of the room. It's good having someone read books or magazines optical character recognition program that I knew the shapes of both print and to me and by listening to tapes, manuals (Ruby), and braille translator (Duxbury braille letters BEFORE I went to kinder- on disk, and radio programs. I took a Braille Translator), a TSI braille em- garten because I never could have class in Programming in C through the bosser, a Hewlett Packard Laser printer, a imagined an 'I' if I had never seen one Oregon Graduate Institute's Saturday Franklin Language Master (a portable before that day. Academy in 1996. The 60 mile drive and talking dictionary with ten word games), the immense hassle in tryingand and a Hewlett Packard 5200 scanner that Memory #2: Coming home with an itchyfailing -- to completely adapt my equip- reads print. head and having my mother drag me off ment to that in the school room was to the doctor for a nonpoisonous means discouraging. I never would have made I use the Braille-'N-Speak to keep a diary of solving the problem. I thought the it if either my brother, my father or my (called "Night Life"), do my math more itch and the little bugs I couldn't feel was mother had not been there to read the easily, keep an appointment calendar, pretty cool though, and complained screen to me. I did stick it out, though. I keep track of names and e-mail ad- about the cure. did my own work and passed the class.I dresses, write some of my programs on, had to laugh at my mother: she'd read the and to keep a log of what we're doing on screen to me and then ask in a very trips.I use the MultiVoice to communi- Memory #3: Finally there were the puzzled whisper, "What did I just say?" cate with people who don't understand wonderful choking noises my mother my speech or the Braille-'N-Speak's made the day she found a list of all the My parents have always encouraged me speech. new words I'd heard at school. First she to make my own decisions. Sometimes, told me I was a great phonetic speller. though, it is easier to just have someone For a number of years I have slept in an She then corrected my spelling and else think, speak or do for me, but I try electric bed with the head elevated so supplied the definitions. I've not used to fight the laziness that fatigue and pain that I can breathe more easily when I am those words since, but I've often won- bring.I talk with my family and friends asleep. Having the head elevated is also dered what I could do to get mom to about ideas, do research and pray in helpful when I'm too tired to sit up to make those noises again. order to find the right thing to do. read. I can just rest back and cruise along. It's difficult dealing with those "outside'"my circle (strangers, people in I've used wheelchairs since outgrowing "Having the right tools, a hurry, doctors, etc.) because the reality my parents' arms. My favorite one is however, adds to my will of my blindness, slurred speech, weak- gathering dust in the garage. It's an to participate in my own ness, and my need for frequent medica- electric scooter that can go faster than my life. As the Blazie Engi- tion seems to make people nervous and parents can run. The combination of neering song goes, 'Tech- they act as if I cannot think properly. It's being blind, liking speed and vehicular nology, technology. It's odd, too, how some people seem to yell traffic is not safe they tell me. The my key to being free."' at me. It's as if they think that since I am scooter will remain in the garage until I blind, I must obviously be deaf, too. figure out a way to know where I am Maybe they are just trying to shout down quickly enough to navigate without the wall they believe is between us. I threat to myself or my mother's vocal I'm a high school senior now, planning a don't know. cords. career in computer programming. My early and continued exposure to tape Having the right tools, however, adds to I'm home schooled, which has worked players, computers, augmentative my will to participate in my own life. As well. My folks, never shy about going communication devices, and other the Blazie Engineering song goes, places or doing things, brought the worldgadgets that scan print or speak have "Technology, technology. It's my key to to me when all I could do was think and encouraged me to try to learn how to being free." breathe. I did go to public school improve the quality of sound programs. I Continued on page 13 ts) 4.;ti PAGE 12 TASH Newsletter, October 2000 ASSIST1VE TECHNOLOGY
Me & My Assistive already finished my first mini-term of six After talking to many people about my Technology weeks! After graduation I plan to work problem in getting the chair that I full time.I would like to have a job with needed, it was suggested that we apply to Continued from page 12 the government. the International Rotary Club of Tigard, Oregon. They were willing to put some I'm about 3 feet tall and weigh about 60 money into this project. We also found LIFE IS GOOD pounds. Because of the severity of my another organization, Wheels of Power, BY CLAUDIA PANIAGUA disability (my bones break easily), I am which helps people with a disability to unable to walk. So I use an assistive get around and to be independent, and Of the things I have learned, I learned technology device, which is a power they also helped us. Disabilities Services that life is good! That no matter what the chair. This chair is not like you might also played a great part in fulfilling this circumstances are, no matter if you are think of a wheelchair. It has a neat dream of mine. This is how we arranged rich or poor, tall or small, kind or bad, feature which allows me to go up to five for the money to buy the chair I needed. able or disabled; life is a gift, a perfect feet high and all the way down to the And now this chair is part of my daily life gift. We have been given everything to floor.It's a great help because now I can when I go to school, and I know it is be happy. It is up to us to decide if we reach for things that are up on a counter, going to help me when 1 go to work. want to enjoy it or not. and I can reach for things that I drop on the floor.I can also look people in the When I got out of high school I worked I have chosen to enjoy life because I have eye. in a bank as a loan processor.I enjoyed realize that I have everything to be working there, but it was a temporary happy about. My family and my friends, I want to share with you how my job. When the position ended, I wanted whose love for me has been there when I assistive technology device has help me. to find another job and there were people most needed them. When I was fragile, I am very happy with my life right now. to help me find one. A youth transitional my bones failed me. When I broke in Everything seems to go the way it should program worker was one of the people desperation and cried, when I was ready go. It wasn't always like that. Six years who helped me. She gave me advice on to surrender because of the pain, when I ago, I did not know what was going to what to look for. But the time passed and felt lonely and incapable, and when I felt happen with me. Everything seemed so I couldn't find a job because I did not "disabled," they were there, beside my blurry. When I first moved to America, I have much schooling, so I realized that I bed, comforting me. My family is one of started going to high school. I was using needed more studies. And that is the the many wonderful gifts God has given a manual wheelchair, but it was difficult reason why I decided to get back to me. I believe with all my heart that God to use at school because the high school school.I needed to get more skills to go is the strength that has helped me that I attended was very large and the to work and offer my employers some- throughout my life. classrooms were far apart from each thing else than just a high school di- other. Most of the time my classmates ploma. Computers have also been my And with that, I want to introduce myself helped me get to class, but it wasn't fair enthusiasm and I thought this was the to you. My name is Claudia Paniagua. I to them because they were always late fortime to go into this career, now that I was born and raised in El Salvador. At their own classes. They were nice and have the opportunity. I got the blessing birth I was diagnosed with Osteogenesis did it, anyway. of my family who is there to encourage Imperfecta (brittle bones).I am unable me to do so. As I said before, after school to walk, so I use two wheelchairs (one at I met a lot of nice people at school and I want to find a job with the government. a time!). When 1 am at home, I use my among them was my therapist. He I know it is not easy, but it is not impos- manual chair to move around, and out in recognized the problem 1 was having and sible, either. the community I use my power chair (myhe knew I would need another assistive little corvette). technology device other than the one I In conclusion, I know I can do all things was using. through God who strengthens me and I came to America when I was 16, and with the right people to help me. All of I've been here for about six years. When He started talking to me about the us people with disabilities are able to do I came I did not speak any English possibility of getting a power chair.I what we want with a little willingness whatsoever, and it took me two years to remember loving the idea. The only and a little persistence, not quitting at the feel comfortable with my new language. problem was that I did not have the first obstacle, but keep on going until the resources to get it. One day we were goal has been reached. I graduated from high school in 1997.I looking at a powerchairs catalog that a am now attending Western Business salesperson showed us, and we saw this Do not quit - persist. The star of success College. I am twenty-one years old and "wonderful chair that would fit my is waiting. planning to get my certificate as a needs." The only problem was that we Computer Systems Operational Specialistdid not have the resources (money) to get by the end of this year. So far so good. I it.It was expensive! PAGE 13t 2 3 1TASH Newsgettev, traeber 2 FROM THE EXECUTIVE DIRECTOR
TASH and Others Meet with break down the ongoing barriers that are President Clinton making potential participants reluctant ARE YOU A UNIVERSITY Continued from page 4 to take on jobs and risk benefits. Clinton PROFESSOR? assured the group that as part of the current budget negotiations, he would TASH has a Student urge Congress to finish the job on the the institutional bias of federal long-term Membership Program! care policy. "Ask the next thirty people Work Incentives Improvement Act by providing permanent Medicare coverage you meet today what their goals are for The program was developed through their golden years," I urged the President. to people with disabilities returning to work. discussions with professors who "Not one of them will say, 'to end up in a wanted to encourage professional really nice nursing home.' Living in a identity through student membership nursing home or any other type of Barbara Toomer asked for an assurance that the new Medicaid eligibility pro- in a strong advocacy organization institution isn't what anyone would while assuring that their students had choose for him or herself or for a loved posed rule that the President had just announced that morning would go into access to enough issues of JASH for one." "So how," I asked Clinton, "did we them to be able to complete a variety end up with a system that provides only effect before the President leaves office. Clinton and Chris Jennings assured her of journal article review and compari- one choice and it is a choice that no one son exercises they assign. would choose?" This line of thinking that it would. James Billy talked about the importance of enforcement and seemed to resonate with the President. The package works like this: Clinton asked me if I personally knew of compliance with existing laws and the families who had been forced to place need for more accessible, affordable housing. Andy Imparato emphasized the Professors can either assign TASH their child in an institution for lack of membership as one would a text medical insurance. I assured him that I civil rights enforcement budget and Paul Marchand reminded the President of the book or package of readings, or can did and that institutionalizing a child offer it as an option. Either way, if isn't a choice any family would make if 25th anniversary of IDEA next month and encouraged the President to organize ten or more students join, they given reasonable options for home receive a discount off the already low supports. an event elevating the importance of the anniversary as he did for the 10th associate member rate. The discount anniversary of the ADA. The President amount increases as the number of The President assured participants that students signing up increases. he would urge the Congress to pass the promised that he would organize some kind of event recognizing the anniversary bipartisan Grassley-Kennedy-Sessions- Regardless of how many students of IDEA. Waxman Family Opportunity Act of join, TASH provides a year's worth of 2000 (S. 2274 and HR 4825). This bill The meeting lasted about 45 minutes. back issues of the journal to all invests $2.1 billion over five years to students signing up under this plan. establish the Medicaid buy-in option. The President showed real interest in the concerns raised by the advocates, took This means your students will start the semester with a year's worth of Both Mike Auberger and Mike Oxford notes, asked questions, and instructed staff to follow up on specific issues. cutting edge research on their shelf talked about progress that had been made and can build their collection over in Colorado and Kansas in getting folks Special thanks are due to the hundreds of the years to come. Under this plan, out of nursing homes and Auberger students receive all of the regular emphasized the cost effectiveness of ADAPT activists, Mary Beth Cahill, John Podesta and Jonathan Young for making membership benefits during the community-based care. Auburger and in addition to an this meeting possible. coming year Marchand also talked about the impor- extra full year's worth of journals! tance of expanding access to housing vouchers so people can afford to live in An introduction to TASH is likely to the community. The President noted that Thanks to Andy Imparato and the NHOYO list serve for their contributions to this be one of the most valued resources he had just negotiated funding for 79,000 you can offer students as they enter article. new housing vouchers and he would the disability community in their look into whether some could be ear- professional capacities. To receive marked specifically for people with materials or to learn more about disabilities. TASH's Student Membership Pro- 0 gram, contact Rose Holsey, 410 -828- Bobby Silverstein talked about some 43 8274, ext. 100 or e-mail: emerging issues in implementation of the [email protected] Work Incentives bill, and emphasized the need for inter-agency collaboration to PAGE 14 TASH Newsletter, October 2000 OCT Elk 2 00
University of Toledo Chester College of Education Township Tenure Track Faculty Position Schools Area of Special Education Teacher of Students with Disabilities and Inclusion Significant Disabilities Coordinator: Chester Township in Morris County, New Jersey has an immediate opening for a special education teacher to work directly with a student with developmental disabilities in a middle Tenure track position. Mature Assistant or school. The district is also looking for an inclusion facilitator to Associate Professor (Significant Disabili- coordinate accommodations/modifications and behavior manage- ties).Established faculty member to ment plan. Prior experience with students with significant dis- coordinate undergraduate licensing and abilities is preferred. advanced degree programs in area of significant disability, with emphasis on persons with mental retardation and Reply to: Dr. Pamela Fiander, Superintendent, Chester Township associated disabilities. Candidates should Public Schools, 415 Rt. 24, Chester, New Jersey 07930 or send a have an established record of teaching, fax to (908) 879-5887. publication, conference presentations, grant support, and professional service. The area 1 of significant disabilities has had U.S. DOE personnel preparation and/or State of Ohio demonstration project funding since 1989. Application deadline is February 23, 2001. Expanding Horizons: Salary and benefits are competitive. Partnerships for Quality Outcomes Please send curriculum vitae and 3 letters of reference to: Training Conference
Dr. William Gray MARCH 8-9, 2001 Coordinator of Faculty Search Committee DOUBLETREE HOTEL, PENTAGON CITY College of Education Snyder Memorial ARLINGTON, VIRGINIA 2810 W. Bancroft Toledo, Ohio 43606 Self-determination Registration info: Individual Outcomes (202) 274-3416 Please contact Dr. William McInerney via e- [email protected] mail ([email protected]) or "Ticket to "Work" phone at (419) 530-2284 with specific 'Workforce Investment Act questions re: area of significant disabilities. Keynote Speaker: The University of Toledo is a state- Mr. Robert Gettings, supported, comprehensive doctoral level Executive Director of the National Association of State institution and an equal opportunity, Directors of Developmental Disabilities Services affirmative action employer. Sponsored by: St. John's Community Services & University of Maryland CRP/RRCEP 0 0 PAGE 15 4 TASH Newsletter, October 2000 INTERNATIONAL HUMAN RIGHTS LAW
Research and publication of this tion concludes that such report was primarily funded by conditions "imperil the the Public Welfare Foundation human and civil rights and the John Merck Fund. MENTAL HEALTH, MENTAL of patients."' RETARDATION AND The Declaration of PROTECT ION OF RIGHTS Caracas calls on national International Human authorities and nongov- Rights Law UNDER INTERNATIONAL ernmental organizations LAW (NGOs) to restructure For many years, the Excerpted from a report by mental health care promises of interna- systems to "promote tional law have not been Mental Disability Rights alternative service fulfilled for people with International models that are commu- mental disabilities (mental nity-based and inte- retardation and mental grated into social and illness). The Universal health care networks."8 Declaration of Human Rights Mental health resources (UDHR) of 1948, the founda- must be used to "safe- tion of international human rights law, In 1982, the United Nations brought guard personal dignity and human and declares that "[a]11 human beings are international attention to the concerns of civil rights"9 and "national legislation born free and equal in dignity and rights. people with disabilities by declaring the must be redrafted if necessary .."10 to They are endowed with reason and "Decade for Disabled Persons," leading ensure the protection of human rights. conscience...." The UDHR protects to the "World Programme of Action against discrimination on the basis of sex,Concerning Disabled Persons."4 As part The principles underlying the Declara- race, religion or "other status." In theory, of the Decade for Disabled Persons, an tion of Caracas received a major boost in people with disabilities have always been international team of experts began 1991 when the United Nations General protected against discrimination by the working on the development of interna- Assembly adopted the Principles for the UDHR, but it took many years before the tional human rights standards that Protection of Persons with Mental illness international community began to would set forth the obligations of all and the Improvement of Mental Health examine the application of this right to governments for people with psychiatric Care (the MI Principles)." The MI people with mental disabilities. While disabilities. Principles are the product of a decade- proper enforcement has historically been long effort by experts from around the lacking, core human rights law that As the United Nations was drafting world to set forth minimum human applies to all people doas a matter of human rights standards for people with rights standards for people with mental lawprovide the same rights to people mental illness, regional bodies in Latin with mental disabilities. America, such as the Pan American Health Organization (PAHO) took the Over the last few decades, the United lead in calling for nations to take dodos in the silmeticas, oeutope, Nations General Assembly has adopted a concrete steps to ensure the protection and other patts of the svotld, mans series of resolutions that can serve as a of human rights for people with mental countties have adopted laws asainst guide to the application of human rights disabilities.5 In a historic meeting disctimination on the basis of law for people with mental and physical convened by the Pan American Health mental disability. °These laws help disabilities.' In 1971, the United Nations Organization in November 1990, the people obtain employment, /cousins, adopted the Declaration on the Rights of Declaration of Caracas was adopted by Mentally Retarded Persons2 (the MR and access to public setvices. 6Thnsa legislators, mental health professionals, laws have been an impottcutt paid of Declaration) and in 1975 adopted the human rights leaders, and disability the ptocess of mental health tefatin Declaration on the Rights of Disabled rights activists from North and South Persons.' Despite the universal applica- America. The Declaration of Caracas and Aavesteatig helped people with tion of these human rights, the interna- represents consensus among profession- mental disabilities to live full lives tional community for many years als and others in the Americas that IA the corn/nu/14y. neglected to hold states accountable for exclusive reliance on the psychiatric the enforcement of these rights with hospital "isolates patients from their regard to people in psychiatric institu- natural environment.. . generating tions. greater social disability."6 The Declara- Continued on page 17 f.; a PAGE 1643 TASH Newsletter, October 2000 INTERNATIONAL HUMAN RIGHTS LAW
MENTAL HEALTH, MENTAL 6 Id. at 83, preamble, paragraph 2. RETARDATION AND The MI Principles specify that people receiving mental health treatment have Id. PROTECTION OF RIGHTS the right to protection against "harm, UNDER INTERNATIONAL LAW "18 including unjustified medication.... 8 Id., article 1. Continued from page 16 Treatment must be provided "based on an
individually prescribed plan... "19 The 9 Id., article 3. MI Principles also ensure that "[n]o disabilities. In the absence of a special- treatment shall be given to a patient '° Id., article 4. ized convention on the rights of people without his or her informed consent. " except under special circumstances set " G.A. Res. 119, U.N. GAOR, 46th Sess., with mental disabilities, the Inter- Supp. No.49, Annex, at 188-92, U.N. Doc. American Commission of Human Rights forth in the Ml Principles.20 A/46/49 (1991). See Rosenthal & has held that MI Principles can serve as Rubenstein, supra note 11 (analyzing the an authoritative guide to the interpreta- Today in the Americas, Europe, and other protections of the MI Principles and tion of the mental health law, as it applies parts of the world, many countries have describing their use as a guide to the to people with mental disabilities.'2 The adopted laws against discrimination on interpretation of human rights conven- MI Principles are also a useful tool for the basis of mental disability. These laws tions). international human rights documenta- help people obtain employment, housing, 12 Case of Victor Rosario Congo, Report 29/ tion, because they provide a fair and and access to public services. These laws have been an important part of the 99, Case 11.427, Ecuador, adopted by the consistent standard for the evaluation of Commission in Sess. 1424, OEA/ser. 1J human rights practices in mental health process of mental health reform and have 7.102, doc. 36 (1999). The Inter- systems around the world. greatly helped people with mental American Commission cited Rosenthal and disabilities to live full lives in the com- Rubenstein, supra note 11, for the The MI Principles apply broadly both to munity. proposition that the MI Principles can be used as a guide to the interpretation of people with mental illness, whether or References not they are in psychiatric facilities, and human rights covenants. Case of Victor Rosario Congo at 8, n.7. to "all persons who are admitted to a See Eric Rosenthal and Leonard S. mental health facility,' whether or not Rubenstein, International Human Rights 13 MI Principles, principle 24. they are diagnosed as having mental Advocacy under the Principles for the illness. The MI Principles protect all Protection of Persons with Mental Illness, 16 14 Id., principle 1(4). such people against discrimination,'4 and INT'L J.L. & PSYCHIATRY 257 (1993) they detail a list of rights intended to (describing the development of interna- 15 Id., principle 1(2). ensure that people detained in mental tional human rights law for people with health facilities are "treated with human- mental disabilities). '6 Id., principle 3. ity and respect for the inherent dignity of 2 G.A. Res. 2856, U.N. GAOR, 26th Sess., the human person."' 5 " World Health Organization (WHO), Supp. No.29, at 99, UN Doc.A/8429 (1971) Public Health in Europe, Mental Health Services in Europe: 10 Years on 75 (1985). The MI Principles have major implica- G.A. Res. 3447, U.N. GAOR, 30th Sess., tions for the structure of mental health Supp. No.34, at 92, UN Doc. A/10,034 18 MI Principles, principle 8. systems, as they establish that " [e]very (1975). person with a mental illness shall have '9 Id., principle 9(2). the right to live and work, as far as 4 G.A. Res. 52, U.N. GAOR, 37th Sess., UN possible, in the community."6 Doc. (1982) (adopted by consensus). See 2° Id., principle 11(1). also United Nations, General Assembly, Implementation of the World Programme of Action Concerning Disabled Persons and The full report, Human Rights & Mental the United Nations Decade of Disabled Within Europe, the World Health Health: Mexico, by Mental Disability Persons, U.N. Doc. A/41/605 (1986). Organization (WHO) has found "a Rights International (MDRI), may be remarkable degree of common ordered from MDRI at 1156 15th Street, 5 See Itzhak Levav, Helena Restrepo and ground" regarding the importance of N.W, Suite 1001, Washington, D.C. shifting away from reliance on large Carlyl Guerra de Macedo, The Restructuring of Psychiatric Care in Latin America: A New 20005; Telephone: (202) 296-0800; Fax: psychiatric institutions and promot- Policy for Mental Health Services, 151 (202) 728-3053; E-mail: ing community-based services that PUB. HEALTH AND POLICY 71 (1994) [email protected]; Web page: permit the maximum possible (describing developments in mental health, www.mdri.org integration into the community." policy, and law underlying the Declaration of Caracas).
PAGE 17 0e) TASH Newsletter, October 2000 4. AI) j OCTOBER 2000
RAMMLER & WOOD, Consultants, argsalis LLC Direct Service Workers: Duties include job training, WANTED personal development/care. Prefer rehabilitation or human services degree or diploma with 1 year experi- Certified occupational, ence. Experience with no post-secondary will be physical, speech/language considered. Competitive salary and benefits. therapists for subcontract work in Southern New Submit resume by mail to Chrysalis #7, 6020 1A England. Commitment to Street SW, Calgary, AB T2H 0G3, Canada; fax (403) transdisciplinary teaming/ 258-1577; or e-mail ([email protected]) integrated related services essntial.
Desired experience with sensory diets, supporting movement disturbances, CST, FC/other AAC, AT, 1111Nr.- A positive behavioral sup- ports, and/or other innova- tive therapies/techniques. CORRECTION: The article, Individuals with Significant Disabilities and Consent to For more information call Sexual Activity, (TASH Newsletter, May 2000) was incorrectly identified as having (860) 349-7083 or send an been written by James K McAfee and e-mail to Pamela Wolfe Dr McAfee was the sole ([email protected]) iauthor of the article Our apologies to Drs McAfee and Wolfe
Rammler & Wood, Consultants, LLC 6 Way Road, Suite 301 Middlefield, CT 06455 Phone: 860-349-7083 Fax: 860-349-7084 E-mail: [email protected] V PAGE 18430 TAM Newsletter, October 2000 GROWING UP WITH DISABILITIES IN ICELAND
New Voicesin
"How do you grow up if you have a while the remaining population lives disability?" Iceland: either in tiny fishing villages or on small farms. The laws about the welfare In 1998 I became involved in a Growing up with a disability system are similar to those in other research project with young BY DORA S. BJARNASON Nordic countries, but there is less of the adults with disabilities, their parents, taxpayers' money to cover welfare friends and teachers. The study, which policies. The state provides pensions is still in progress, tries to understand 8th and 9th centuries. Today Iceland is a for the elderly, unemployed, sick and the world of young people with disabili- modern society where people in general ties in Iceland, the first generation to enjoy a high standard of living and good the disabled. The money does not suffice, so in case of hardship if people grow up with the ideology of integration education. and inclusion as the law of the land. have no other source of income, the For a millennium the Icelanders were local communities supplement these pensions. The state also provides free We are first interested in situations and largely subsistence sheep farmers, living education from the age of 6 to 16 and a experiences of individuals who have on isolated farms scattered around the disabilities that lead to social discrimina- coast. For centuries the island was a largely free education at tertiary and university levels, free or low price tion; how they see themselves and how Danish colony with no towns or villages. they are perceived by parents, friends Most people were either subsistence health services, rehabilitation, medi- and teachers. Second, we want to learn farmers, servants or paupers. Life was cine, and technical aids for the elderly what young people with very different hard due to natural calamities and and people with disabilities. disabilities have in common, what is epidemics. Throughout Icelandic history, different in how they experience their the family by law had to look after its own, but if a person had no family, the situation, and how that may be related Although the study is not yet to different social situations and deci- law obliged the Church and the commu- complete, we have seen that the sions made by their parents and teachers nity to take care of people in need. because of their adolescence rather than level and type of disability label has their disability. Thus the poor, the sick, the elderly and less impact upon the quality of life those with disabilities were placed from for these young adults such as Iceland - A Small Nordic Welfare State one year to the next with farmers, for a their friendships, activities, and fee. The industrial revolution took hold their belief in their ability to of Iceland at the beginning of the 20th Iceland is a volcanic island approxi- become adults than parental century, resulting in its rapid transforma- mately the size of Ireland, on the North support and expectations, school- Atlantic ridge between Europe and tion into a sovereign, democratic, Nordic-type welfare state. ing, and supportive, nurturing non- America. Its population is small, a little family relationships. over a quarter of a million. The Iceland- ers are still remarkably homogeneous, Currently, almost two thirds of the OOOOO OOOOOOO largely descendants of Nordic and Irish population live in and around the capital people who populated the country in the city Reykjavik and Akureyri in the north, Continued on page 20 PAGE 1 9 TASHNewsletter, October 2000 x3 7 GROWING UP WITH DISABILITIES IN ICELAND
New Voices in Iceland: We base our approach on the notion that 1. What does it mean to be an adult with Growing up with a disability reality is always a process of social disabilities in Iceland? Continued from page 19 construction. Thus by letting people tell their stories, we try to understand how 2.How do young people see themselves they act in response to the "meanings" reach adulthood when they have signifi- Normalization and social integration that their situations have for them. cant (multiple) disabilities, and how do became the law for people with mental they negotiate adult status? retardation in 1979. In 1983 the law was Personally, I bring a number of perspec- changed to embrace all people with tives to this research. Not only have I 3.To what extent is this related to age, disabilities except people with chronic been doing research on integration and biological and physical situations, and to mental illness, who were finally included later inclusion and inclusive practices for what extent has this to do with type of under the law in 1992. the past ten years, I have also been trying parenting, social status and bureaucracy to learn more about how to prepare in Iceland? The Icelandic value base is ruggedly educators, student teachers and develop- individualistic and egalitarian. There is a mental therapists to work in inclusive Some of the study's preliminary findings long tradition of working and helping schools and other public settings. Finally, were very enlightening. For example, all one's self, and a commitment to the I am a parent of a 20 year old son who of the young people interviewed (except principle of mutual help to those in has significant disabilities (physical, for one young woman who did not hardship situations. For almost a centurysensory and cognitive). This shapes and expect to live very long and said that she the community has been obliged to take molds my questions concerning the had "swept all her dreams under the care of people in need. In modern subject under discussion. carpet") harbored similar dreams. They Iceland, as in almost every other country, dreamed of becoming independent of some are more equal than others. This is a qualitative study and the main parental authority, living in their own Differences in wealth and status are method of collecting data has been homes, working, having friends and growing, marginalization of minority indepth interviews. Over the past two sweethearts. Many hoped eventually to groups is a known phenomena, and years I have interviewed 36 young adults get married or find a permanent partner. people with disabilities tend to be rather with a variety of significant disabilities, Just over half of the young people less than equal than most according to one or both parents or support persons ofadmitted to a dream of having children of any measurement one might select. 32 young adults, 12 teachers, and 12 their own, but some of those said that friends. The interviews were indepth, they could not realize that dream because The Study semi-structured and lasted from 45 they had been sterilized. A few were very minutes to over 2 hours. bitter about this, while others explained The study looked at young Icelanders this as an unavoidable necessity "because (16-24 years old)' with disabilities, A young woman of 20, who has spina my mother does not want to help" as one people from urban and rural sectors, bifida, helped me with the interviews young man in a wheelchair said. "She from different socio-economic back- with the young adults. She was my does not want to get stuck with my baby grounds, and people with a broad range assistant, but also my guide into the and I cannot look after it on my own," of disability labels. Young people with habitat of young people with disabilities, said a young woman with very bad disabilities in Iceland have not been the and my interpreter as she helped me to eyesight and an intellectual disability. focus of scholarly endeavor, and there is understand both slang and slurred little information available about the speech. Not one of the young people dreamed of social forces that influence their lives. living in a group home in the future, but I brought two broad questions to this many saw themselves in a sheltered The purpose of the research that we have study. First, what do these young adults, workshop despite the dismal pay. Three embarked upon is to explore how young their parents, teachers and friends, young people were already living in adults with disabilities experience their believe hinders them most in pursuing group homes, but hoped they would be lives and possibilities at school, work and their learning, working or participating able to move to a home of their own. in society. We are interested in learning in society as adults, and what is most Some of the young people seemed pretty to what extent their activities, feelings helpful? Second, what are the young certain that they could fulfill their and hopes are related to their disability, adults' hopes and expectations for their dreams, but later than their non-disabled social situation, origin, family type and future as adult members of society? age peers, others seemed much less support, friendships, the way in which Three no less broad questions have certain. One young woman of 20 put it their teaching and learning is organized, emerged from the data. These are: this way "this is my dream if I am and the kind of support they receive at allowed to grow up some day" school. 233 Continued on page 21 PAGE 20 TASH Newsletter, October 2000 GROWING UP WITH DISABILITIES IN ICELAND
New Voices in Iceland: some felt that they would have to fight or on the wasteland in between. The first Growing up with a disability for their adulthood every inch of the way, group of travellers (group A) seemed to Continued from page 20 but that they would eventually get there. be on the same road as the rest of us -- the road of the mainstream of society. The second theme, the belief that the Many experienced a much more bumpy young people might become adult in the ride than the rest of us, but not always. In the fieldwork we were struck by the biological and bureaucratic sense but not Two or three travelled at great speed, difficulties some of the young people had necessarily reach adulthood in the social cruising on the middle of that road. to overcome to be accepted and to accept sense (or if at all, then it would be far themselves as adults.' Further, it soon into the future), was held by a dispropor- They were a young man with cancer who became clear that these difficulties had tionate number of young people with is graduating with top grades, a young less to do with disability labels than a intellectual disabilities, but also by a woman with spina bifida studying number of other factors, such as where sizable number of young people with a journalism, and a young man with the person went to school, whether the variety of physical and sensory disabili- paraplegia studying mathematics at the person had friends that did not have ties. The young people who found it university. They put their effort into disabilities, as well as friends that did, hard to see themselves becoming fully excelling at school and succeeded in and the nature of their parenting and adult felt that they had serious needs and surpassing most of the other students, parental support. not enough supports to secure the social those with and those without disabilities. status of adulthood. Three young people, If they knew that they had at least one two of whom knew that they were dying, Most of the travellers on this road, parent, or parent figure, who expected and a young man who had been very however, were travelling at a much much and supported them in their hopes significantly disabled through assault did slower speed, nearer to the edge of the and dreams, it was easier for them to not expect to become full-fledged adults road, occasionally falling off but getting believe that they might become "fully in the social sense. back on again. All of the group A adult" in society. The exception to this members, both those moving fast and was two young adults with autism, where those moving slower, had in common the disability seemed to be the most ..In this study we have traced how that they had been in inclusive or influential factor in their lives. For the social processes that are set almost as integrated schools for much of their rest, their schooling, expectations of soon as there is a diagnosis of school years. They had learned, to teachers, the way parents dealt with them disability shape the lives of young become effective self-advocates. They and their disability, and their friendships adults with disabilities and impact had real friends, both with and without seemed key determinants in their their future prospects of reaching disabilities, most had at least one parent their dreams for full adulthood with perceptions of themselves and their all of its duties, rights and opportuni- who stood by them, supported them, and ability to fulfill their dreams for adult- ties. expected them to do their best. These hood. young people all expected that they This is important in two ways: at a would eventually reach social acceptance Two themes emerged from the data, on theoretical level, it adds to our as adults. how one reaches adulthood. The first understanding of the process of how refers to adulthood that comes slowly but society "handicaps" people with The second group of travellers (group C ) surely, and the second that one will disabilities. At a more practical and was on a slow lane. Members of this become adult biologically and bureau- pragmatic level, it can suggest better group were supported a great deal more and more powerful strategies for cratically but not necessarily socially. empowering young adults with than the young people in group A. Fewer Regarding the first theme, young people significant disabilities. Social demands were put up on them, and felt that they had to earn adulthood by processes are not made of steel; they neither their teachers, nor parents extremely hard work and diligence. They can be affected or changed for the (sometimes), nor they themselves thought that by working harder at school benefit of individuals and their lives. (sometimes) expected much. With two or at work than anybody else, that they exceptions, these young people felt would eventually graduate or be pro- themselves to be younger than their moted and do well. That eventually chronological age. might get them most rights and privilegesI take the high road, youtake the low of adulthood. This was reflected by road... or the wasteland? What they had in common was not young people with a variety of disability necessarily the disability labels, although labels ranging from physical, mental and Our interviews with the young adults left more people in this group than in group sensory disabilities to mental illness. us with the feeling that each member was A had a label of mental retardation. Another version of this theme was that travelling along one of two parallel roads Continued on page 22 PAGE 21 TASH Newsletter, October 2000 239 GROWING UP WITH DISABILITIES IN ICELAND
New Voices in Iceland: and feelings 16 to 20 years ago. She said; with disabilities. The study is still in Growing up with a disability "I do not know why I keep crying, but progress. However, it does present two Continued from page 21 may be it is because you are the first interesting points. First, the level and person to ask me how I felt and who type of disability label has less impact helped us. No one did, we were supposedupon quality of life such as friendship, to know it all; we still are." activities, and one's belief in one's ability What they had in common was that they to become adult than parental support had all been to special schools or special Each story was unique and moving. and expectations, schooling, and whether classes, they had all learned to accept When the interviews have been com- or not one has friends. Second, the nature their disability in a fatalistic manner and pleted, I will try to do justice to the gifts of support that parents receive right from learned to fit (more or less) into the these parents shared. I have not yet the start of life with a child with disabili- system. Some of these young people were interviewed all the parents, and more ties contributes significantly to that content and happy with their lives. Many mothers than fathers came. Still, it is child's perspectives, quality of life and lead a full social life (but they had not clear that all the parents who participated future prospects. always planned that social life them- in the interviews cared very deeply about selves). Most had friends with disabilities their sons and daughters, and all had only and moved primarily in segregated struggled with professionals, the public Dora S. Bjarnason is an Associate Professor settings. Many had non-disabled paid at the Iceland University of Education. health system, social system or the Professor Bjarnason is Icelandic, and a friends (paid support people near their schools on their behalf. British educated sociologist. She has been a own age) , and a few had only paid Visiting Scholar at Syracuse University, The friends. The research team was struck by a University of Oregon, and in universities in number of things during the interviews. New Zealand and Australia. Professor There appears to be a third group, group Most parents reported feelings of isola- Bjarnason is currently a Visiting Scholar at B, between these two groups of travellers. tion, helplessness and despair at being the Danish Pedagogical University in This group is comprised of a few young told by often clumsy professionals about Copenhagen. people wandering about in what one their child's disability. Too many parents For more information on this study, contact might call the wasteland. Apart from tworemembered exceedingly disrespectful Dora Bjarnasonby e-mail (dora @hhi.is) or young people with autism, members of professionals trying to explain their (dobj @dpu.dh) this group had a variety of labels similar child's label and prospects. A mother of a to those in groups A and C. It is unclear 19-year-old told this story: what they may have in common in their These people were very able. They "The doctor was pointing at this bell curve seemed to need less physical supports and explained that it was an intelligence Footnotes than many of the people in the other curve. He said, `this is where most people groups. They sometimes advocated for are, this is where bright people are and this 'Until 1998 young persons became legal themselves, but more often took the is where the chimpanzee is.'Where would adults at the age of 16. This was changed fatalistic attitude. Many found it difficult you put my daughter?' I asked. 'Here,' he by law but the idea that one is an adult or to accept that adulthood could apply to said 'next to the chimpanzee!' (Laughter) close to adult status at 16 is still promi- themselves one day, or they saw it ahead `How could he say that? This was a joke to nent within the society (law no.74/1997). at the end of a long hard struggle. Some him...I lost all respect for him....'" Only one person in my sample was 16, felt that one or both of their parents two were 17 and all the others 18 or undermined them, took too much charge How the parents handled "being told," older. or did not want to have too much to do the kind of support they got from the with them. Many expressed anger at professionals, especially medical and I use this definition of adulthood from parents, teachers or support persons. rehabilitation staffs, and from family and Bates. The status of adulthood is most friends, highlighted the amount of power often correctly assumed as part of a tacit The parents parents gave to the professionals, what exchange of complex information they themselves took charge of, and through the interactive elements of The parent interviews are currently in when. language and social content and cogni- progress. Interviewing the parents could tive interpretation of relevant informa- turn into a very emotional encounter. Conclusion tion about age (e.g. appearance, voice, One mother, a professional in the social size and so forth.) Bates 1975. This services field, cried and laughed through- This article is a very brief and simplified status brings with it certain rights, duties out the interview. She was very surprised version of a complicated, long-term studyand responsibilities. at her own reaction at talking of events of the world of the young Icelandic adult PAGE 22 240TASK Newsletter, October 2000 POSITIVE BEHAVIOR SUPPORTS
tant to understand that the presence of an inhibitor or an enabler in a given school does not by itself guarantee success or failure of implementation. Rather, inhibitors and enablers provide clear points of focus for facilitators of the change process.
ENABLERS to PBS for Individual Students:
A sense of urgency usually surrounds events of serious student problem behavior. There is a growing literature base of successful experiences in schools. There is generalizability of the PBS process across student populations. A child-centered focus serves as the foundation and leads to measurable outcomes in the form of reductions in problem behavior, increases in socially BY TIM KNOSTER, DON KINCAID, JEANNINE BRINKLEY, ANNE MALATCHI, acceptable alternative skills, enhance- JENNIFER McFARLAND, PATRICK SHANNON, JUDY HAZELGROVE, AND ment in quality of life, and consumer CAROL SCHALL satisfaction. Educators can relate to the teaching In the April 2000 issue of the TASH "inhibitors" at each step in the change paradigm that serves as the corner- Newsletter, the Tri-State Consortium process that correspond to a given team's stone in the process. discussed the critical features of a vision, skills, incentives, resources, and Changes in IDEA language empha- positive behavior support (PBS) approachaction plan for change. Within the PBS size functional assessment and positive that had been implemented across the process, it is particularly important to behavioral intervention. states of Pennsylvania, Virginia, and Westattend to the enablers to the process The failure of exclusion and punish- Virginia. We described the components while successfully managing the relevant ment in school settings has been well of the PBS process and discussed the inhibitors across settings (e.g., classroom, documented. success of the approach within these home, and community factors that may The problem solving process results three states. We indicated that hundreds impede implementation of PBS). This in interventions that are effective. of individual teams and a few school- article attempts to highlight some critical The process provides families and wide teams had experienced success in factors that enable and inhibit the PBS educators with an opportunity to addressing challenging behaviors of process based upon the Consortium's collaborate. students and in improving areas related experiences over the last several years. to the students' quality of life. A support plan can have a broad What have we learned about critical impact on the life of the student, In light of the success of PBS in school variables that enable or inhibit the teachers and family members. settings, it is logical to wonder why it is application of PBS for individual There are usually logical opportuni- so difficult to establish positive behavior students? ties to imbed the process for individual support for some students in some students into existing infrastructures and systems in schools (e.g. con- schools. In particular, why is it that Our experiences with PBS, coupled with tinuum of assessment procedures in positive behavior support can take root what has been published in the literature schools). and flourish in some school systems, but (Hieneman & Dunlap, 2000), suggests wither and die on the vine in others? that there are a wide range of factors that Knoster, Villa and Thousand (1999) haveimpact the application of PBS for indi- What have we learned about critical provided a change process framework vidual students. The list that begins in variables that enable or inhibit the that may help us to better understand the next column highlights what our application of School-wide PBS? why this happens, and suggest ways to project has identified as primary enhance adoption/utilization of PBS "enablers" and "inhibitors" to application In a similar manner to supporting within given schools. The authors of positive behavior support for indi- individual students (i.e., individual describe the presence of "enablers" and vidual students in schools. It is impor- Continued on page 24 PAGE 23 TASH Newsletter, October 2000 241 POSITIVE BEHAVIOR SUPPORTS
Insights on Implementing ENABLERS INHIBITORS Positive Behavior Support in to School-Wide PBS: to School-Wide PBS: Misperceptions of dichotomy Schools Building based systems represent a between student "behavior" and Continued from page 23 logical extension of PBS for individual "academic performance" (e.g., "If we students. This approach is sometimes could just get the kids to behave, then student teams), "enablers" and "inhibi- more easily marketed to school we could teach them"). tors" exist relevant to building-based administrators who may have greater A lack of self-reflection at the application of PBS for all students. The pressure to address building disciplin- building level, and in some instances, lists to the right include a number of ary matters as opposed to supports for denial as to the fact that exclusion and important points for consideration one particular student. punishment will not bring about pertinent to school-wide application of Schools are clearly under pressure desired changes. PBS. to do something to address increasing Misapplication of "zero tolerance" perceptions of society regarding youth approaches and society's knee-jerk INHIBITORS violence/disruptive behavior. reaction to media sensationaliza-tion. to PBS for Individual Students: Building-based PBS is also built on Building-wide approaches by a teaching paradigm with which themselves will not be sufficient to The initial point of entry for teams educators can relate. support the small number of students is often in response to crisis. PBS takes a long-term view and that require individual students The process takes time and may can positively impact school climate/ systems (i.e. 3-7% of students). require reassigning resources. culture to facilitate student achieve- Facilitators of implementation Often schools desire a quick fix/ ment. must tend to the process of change for simplistic reduction of problem A school can often have a signifi- more than one year to sustain and behavior. cant initial impact by targeting impact the culture. PBS must become There is a general lack of under- prevention strategies based on building "institutionalized" in order to have an standing in schools that PBS, while data analysis. enduring impact. being person- centered, is a problem- Schools who already have the Helping staff to change their solving approach that requires careful concept and process of team problem operating set of assumptions regarding management of time, energy and solving in place (e.g., pre referral the ineffectiveness of reactive proce- resources. intervention teams, individual support dures such as punishment and helping Generalization of practice by teams teams) are well positioned to go to them to see long-term value in being from one student to another typically building-wide scale. proactive requires time and effort. must be taught. There is an increasing awareness Durable, significant change There must usually be an initial of school-wide approaches in the field. requires commitment and administra- internal champion and/or external Local ownership is fostered as a tive support. facilitator. result of consensus building activities Schoolwide PBS requires that a PBS requires a team approach that related to identifying and teaching core priority be placed on consensus may require a long-term commitment behavioral expectations to all students. building concerning behavioral from the team as well as facilitators/ Teaching staff typically find expectations and consistency among trainers. building based data helpful for staff. Recognizing/ reinforcing ex- Follow through and implementa- decision making when it is presented pected student behavior requires buy- tion can be compromised when there is in a user friendly format. in from a critical mass of staff. no internal champion who understands Presentation of information and Resources and schedules may need the process and philosophy. data on behavior change as a result of to be re-deployed and/or re-aligned to Schools often struggle with school-wide application can be used to facilitate the teaching of core behav- establishing proactive interagency enhance communication and public ioral expectations to all students. approaches. relations with stakeholders (e.g. Ongoing progress monitoring and Individual teams often struggle general public through media cover- planning is required beyond the with creative problem solving at least, age). initiation phase. in part, due to traditional decision Other agencies and community making hierarchies in schools. groups are logical collaborators in the Mandated changes by school admin- process. Important Changes istration in response to the IDEA can result in teams feeling compelled to Schools are increasingly under pressure simply fill out forms as opposed to to change. In response to this pressure designing and delivering support. X42 for change, the enterprise of positive Continued on page 25 PAGE 24 TASH Newsletter, October 2000 POSITIVE BEHAVIOR SUPPORTS
O 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 Insights on Implementing 0 PBS has been increasingly acknowl- 0 0 Positive Behavior Support in edged in both practice and the research 0 0 literature as effective practice in support- 0 0 Schools 0 0 ing students with problem behavior 0 0 Continued from page 24 0 0 across home, school and community 0 0 settings. 0 0 0 0 0 behavior support has developed signifi- These changes, when viewed in total, are o Full-time and part-time cantly in the last few years to assist O 0 exciting as they serve to establish the 0positions available working 0 schools in making changes that impact parameters for expanded practice in the not only children with disabilities, but all o with adults with develop- 0 future. We believe that the foundation of o mental disabilities.Flexible o children in all schools. As a result of research, policy, and practice exists for 0 legislation (IDEA 97), activities of increasingly embedding PBS in school c), schedule. Various times 0 various federal projects, as well as o and shifts now open. Great 0 systems to better support students with 0 0 projects initiated by state and local challenging behavior and to positively 0starting pay and benefits 0 education agencies, there has been 0 influence school climate for all students. Oo for those who qualify. 0 significant outreach on PBS in schools. The next few years will provide an o Rewarding work for the 0 In relation to this outreach, a number of O 0 opportunity to apply what has been O rightpeople. Call or stop 0 important changes in research, policy, collectively learned in the field to date, ° Oo in for an application/inter-0 and practice are currently emerging. and set the stage for realizing further o view today. These changes include: positive results and future learning. 0 0 o For further information, ° O Changes in policy and practice in O 0 schools based on research in PBS. This o contact Laura Baker Ser- includes not only research on assessment For more information interested °, vices Association, 211 Oak 0 and intervention, but also research that o Street, Northfield, MN 0 parties are encouraged to visit the O 0 looks at broader measures of impact Tri-State Consortium's website at O 55057, call (507) 645- 0 beyond simplistic reduction in problem www.positiveapproaches.org. °o 8866, or send an e-mail to (30 behavior. o (www. laurabaker. org) 0 0 O 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 O Continued growth of self-sustaining training/technical assistance networks 0 across the country. In addition, parents and advocates are increasingly realizing 2000 TASH Annual Conference Special Event the value of PBS and are requesting that schools implement positive approaches.
O State and Local Education Agencies, in response to IDEA 97, have begun to "Zow 34 Is Yam. Clarlle?" change policy in many states in such a way that training, technical assistance, A new musical for schools that promotes the resources and other supports are being provided at regional, state and local healing of exclusion, ridicule, and violence levels. In addition, there has been a will be performed at 7:30 Thursday evening corresponding constructive change in by an inclusive cast of the Fort Lauderdale belief systems in many Local and State Children's Theater. Education Agencies that have the responsibility for providing educational services and programs. Subsequently, a The musical, by writer and advocate Jeff Moyer, has been hailed by growing number of State Education teachers, parents,kids and critics from California to the Virgin Agencies are developing policies and Islands. One theater writer who reviewed the work stated, "A procedures that increasingly support and noble work that holds great promise in shaping the upcoming sustain practices (e.g. State Improvement generation, this promises to be an important teaching tool for Grants). families, youth leaders, and teachers." Run time 1 hour.
PAGE 252 4 3 TASH Newsletter, October 2000 EARLY CHILDHOOD CARE AND DEVELOPMENT
Care of fnfants cognitive benefits which will sustain the child for life.It and Young recognizes that mere physical well-being is not enough. Children with There must be the kind of loving emotional support which brings meaning to Worldwide childhood."
BY BARBARA KOLUCKI, To this end, UNICEF has established an inter-sectoral Early Childhood Care and working group on young child Development and Children's development that met in Media Consultant to the September of 1998, followed UNICEF-Maldives Office by a December 1999 meeting on Early Childhood Care in New York City. The Workshop focused on pro- Global Trends +Brain development is much more gramming that has been initiated by vulnerable to environmental influences several UNICEF Country Offices, Around the world, almost every day than suspected. This includes not only particularly those highlighting 1) the in the media one can find some- nutrition, but also the quality of interac- central role of families; 2) the supportive thing new about the critical tion, care and stimulation. role of communities; 3) enabling national importance of the first five years of a environment and; 4) communication and child's life. Parents are being told about There is evidence of the negative advocacy. Program guidelines on Early the variety of things they can do to impact of stress during the early years on Childhood Care, as well as Tools for stimulate their baby's growth and brain function. Children who experienceAssessment, were also discussed. development. There are new magazines extreme stress during the early years are being published, new websites, consulta- at greater risk of developing a variety of In 1995, "Growing and Changing: A Guide tive groups to the United Nations cognitive, behavioral and emotional to Early Childhood Development for agencies, and new international non- difficulties. Parents," a series of four 10-minute governmental organizations (NG0s) and animated videos and guidebooks, was foundations devoting time and money to There are proven "windows of oppor- produced by UNICEF. The series covers Early Childhood Care and Development tunity" for learning during the first years basic information on normal child (ECCD). Even advertising for diapers of a child's life. If these windows are not development and simple ways a caregiver and toys now often contain important opened at the critical time period, it will messages about ECCD in them! be difficult, if not impossible, for a particular type of learning to occur at a Much of the new research is basically later time. In many western countries, early interven- confirming what parents and practitio- tion programs for infants and young ners in the field of early child develop- Children who have fathers that are children with disabilities have been in place ment have known and been practicing involved in nurturing and caregiving for the past 25 years. Identification of a for many years. What we have now is often learn better and have fewer social disability at birth or soon thereafter has new scientific data to support this and behavioral problems later in life. allowed for the youngest infants to be knowledge and practice. placed in a program where they are UNICEF's New Priority Area nurtured and stimulated, together with For example, we now know that: addressing their medical needs and the For UNICEF, and its work with collabo- emotional needs of their family. The years 0-3 are critical in the rators throughout the next decade (2000 formation of intelligence, personality, and 2010), one of the key priorities will be What is important to note is that these social behavior, and the effects of neglect Early Childhood Care and Development. programs have been doing for many years are cumulative. Executive Director Carol Bellamy calls it exactly what is being presented today a logical extension "of everything we through the media as new information for Brain development before the age of have done before; it takes us beyond children without disabilities. one year is more rapid and extensive than survival. It affirms that a healthy and previously realized. The brain nearly nurturing environment in the early years triples in size within the first year of life. brings with it physical, psychological and Continued on page 27 PAGE 26L 4 4 TASH NewsleHer, October 2000 EARLY CHILDHOOD CARE AND DEVELOPMENT
Core of infants and Young For some disabilities, the timing for first three years of life, can develop Children with intervention is critical. Simple surgery, brains that are visibly smaller. Children treatment or exercises is usually much in stressful situations of this nature also Disabilities Worldwide more successful if it is done in the first tend to suffer from emotional problems. Continued from page 26 years of a child's life. For example, a cataract should be removed from an Because we know that experience infant before the age of six months. affects the size and structure of the brain, Other types of surgery are usually it is imperative that children who are can nurture skills in language, social, recommended between the ages of 6 to diagnosed with a disability receive as emotional, physical and motor develop- rich and stimulating an environment as ment. The material is available in 18 months. possible. English, French, Arabic and Spanish It is not uncommon for some through UNICEF. Some countries, + disabilities to go unnoticed unless Disability specialists lead the way including Lebanon and Turkey, have parents are aware of what to look for. already re-packaged the videos together For example, many children are not In many western countries, early with live-action segments from their identified as being deaf or hearing intervention programs for infants and country. impaired until the age of two or older. young children with disabilities have Infants and children with Most babies with hearing difficulties coo been the norm for the past 25 years. disabilities and babble, so unless the baby's hearing Identification of a disability at birth or is checked regularly, or a parent notices within the first months of life has that the baby does not react to loud allowed for the youngest infants to be Babies are born with physical, social and sounds, it is not noticed until the time placed in a program where they are psychological capacities allowing them to most babies begins to speak. Since nurtured and stimulated, together with communicate, learn and develop. This is hearing is connected to every other addressing their medical needs and the true for all infants, including those with aspect of development, however, it is emotional needs of their family. Cutting- disabilities. What might be different is important to make an early identifica- edge programs exist to train parents on the limited or lack of use of a particular tion. Children who are introduced to what they can do at home, specific sensory organ or a physical disability of sign language early usually do better techniques with regard to caregiver-child one type or another like cerebral palsy or (academically, socially, as well as in the interactions based on disability-specific a club foot. Or, the child might have a complexity of use of sign language rehabilitation, and play situations where cognitive disability. But even a child with communication), than those who do not young children with disabilities can learn the most significant disabilities can learn. learn it until they enter primary school. developmental and social skills. The If the child's capacities are not recognized In addition, some children can benefit overall opinion is that these programs and supported, these capacities will have been and are effective. What is wither rather than grow and improve. from hearing aids. important to point out is this: these The sequence of skill acquisition is programs have been doing for many How does some of the new research sometimes affected when a baby has a years exactly what is being presented relate to infants and young children with disability. A child who is blind might today through the media as new informa- disabilities? What is unique to babies experience delays in walking but not in tion for the parents of infants and young with disabilities and what are the sitting. children without disabilities. In fact, implications for early intervention? Because of disability specialists have a lot to teach Here is a summary of some disability lack of all of us working in the field of Early specific information that should be visual Childhood Care and Development. shared with laypersons and caregivers stimulation, around the world: as well as a What happens, however, to the majority self- of infants and young children with The greater the degree of sensory disabilities in the worldthe nearly 80% deprivation for an infant (visual, hearing, protective that live in developing countries?It is movement) and the longer it lasts, the fear, many true that many are cared for and loved by more permanent the impairment or babies who are blind their families as much as any child in the disability. will be less motivated tomove and world. There are numerous families that instinctively know what to do, how to Even in the case of sensory depriva- explore. adapt, and the importance of integrating tion, it is not only the particular sense their child into family, school and that might be compromised, but also +Babies' brains are vulnerable to cognitive, social and emotional develop- stress. Children who are in situations of ment. war, violence, and abuse, especially in the Continued on page 28 PAGE 27 TASH Newsletter, October 2000 245 EARLY CHILDHOOD CARE AND DEVELOPMENT
Care of Vnfants and Young ChiMren wish DisaraiVities Every infant, whether or not he or Concluisioni Worldwie she has a disability, can benefit from Continued from page 27 nurturing and stimulation of the senses. The Convention on the Rights of the The more a child is spoken to, sung to, Child (CRC) includes the right of read to, danced with, exercised and children with disabilities to equal played with, and encouraged to explore opportunities, as well as to have their community life. There have been pio- in a safe environment, the more the brain disability detected and treated as early as neers, too, that have brought early and body will develop. possible. The UNICEF Mission State- intervention projects to countries like ment includes a commitment to ensure Jamaica, Guyana, Malaysia, the Philip- The earlier a disability is detected, special protection for children who are pines, India and others. These projects the more a child can benefit from both most disadvantaged, including those with are exceptional and some have spawned rehabilitation, as well as simple interven- disabilities. The new focus and priority "satellites" to more rural, isolated areas. tions that help maximize abilities and attention to Early Childhood Care and And more community-based rehabilita- potential. Development (ECCD) must also include tion (CBR) programs that were originally infants and young children with disabili- designed for adults with disabilities now There are simple things a parent can ties. The families of these children must include a component for children. do to detect a disability in their young be included, as well. This cannot be seen child. These include: holding a brightly as a specialized or add-on component of Workilnill againnst iffig r aimed colored cloth or toy on one side of a ECCD, but one that is integral to ECCD. attitudes baby's face and watching to see if the It is not only absolutely critical, but it is infant follows it to the other side with possible for every program, every Having worked in over a dozen coun- her/his eyes; standing quietly behind a product and every country to include tries, mostly in developing parts of the baby and then clapping one's hands or infants and young children with disabili- world, I find that a major challenge to slamming a door to see if the infant ties.This is a moral and ethical impera- reaching infants with disabilities in their makes a startled motion; noticing if a tive that will, as the research tells us, earliest days is the deeply instilled social baby at around age three months can lift positively or negatively affect the lives of attitudes that lead to these children being her/his head when placed on her/his millions of children in the world. hidden and isolated. Even with advances stomach; smiling at a baby and watching in many parts of the world, there are still to see if the baby responds by smiling, millions of people who have never seen a cooing, and/or looking back. Most References: positive portrayal of a child or adult with parents and grandparents know what a disability in a book, television program other children have done around a Rethinking the Brain: Early Child Brain or film. They might not have ever met an particular age; they already have a skill inDevelopment, a presentation kit from the independent person with a disability. If a early detection! Families and Work Institute, N.Y. parent believes that his child cannot learn, will not be able to study, will never There are simple things that can be "What's Going On In There," published marry or hold a job, then it might seem done in any home to enrich the baby's by Bantam Books. reasonable to the family or caregiver to environment. These include: safe, tactile simply love that baby and care for the toys; brightly colored or black and white child's basic needs. The low expectations mobiles; labeling objects and actions; Reprinted with permission of for infants and children with disabilities infant massage that includes talking with Rehabilitation International (RI), leads to their being spoken to less, played the baby, naming body parts and re- publisher of the newsletter, One-in- sponding to the baby's cues; encouraging with less, taken outside the home less, Ten. For information on the work of stimulated less, and educated less. the baby to communicate in whatever possible way; and guiding touch and RI, call (212) 420-1500. Basic imilforassationa movement.
We must remember that that early All children need and will benefit intervention program need not be greatly from continuous contact with expensive to make a difference in the life caring adults and children their own age. of a young child with a disability.All The more children and adults with parents of infants and young children disabilities become visible in the commu- with disabilities can make good use of nity, the more they will be joined by the following information: others with disabilities who now see they are welcome in the community.
PAGE 28 246TASK Newsletter, October 2000 2000 TASH ANNUAL CONFERENCE
Em=na± c°t'fra
To assist with planning your schedule for the upcoming TASH conference, we have provided an advance list of the auxiliary and committee meeting schedule. Please note that not all events have been finalized.
Auxiliary and Committee Meetings
Chapter Operating Committee Thursday, 7:308:30 a.m. in the Imperial IV Room
Communications Committee Friday, 5:15 - 6:15 p.m. in Conference Room 5
Conference Planning Committee Saturday, 12:301:30 p.m. in the Club Atlantic Room
Employment Committee Friday, 7:00 - 800 a.m. in the Bordeaux Room
Education Committee Friday, 7:008:00 a.m. in the Club Atlantic Room
Future Conference Site Selection Thursday, 6:007:00 p.m. in Club Atlantic Room
Governmental Affairs Committee Saturday, 9:0010:00 a.m. in Conference Room 1
JASH Editorial Board Friday, 1:00 - 2:00 p.m. in the Grand Ballroom
JASH Associate Editors Friday, 2:004:00 p.m. in Conference Room #4
Membership Committee TBD
Multicultural Committee Thursday, 1:002:00 p.m. at the Roundtable Luncheon
Publications Committee TBD
TASH Board Meeting Tuesday, 12:007:00 p.m. Saturday, 11:15 a.m. - 4:00 p.m.
TASH Open Forum Thursday, 1:002:00 p.m. in Monaco Room
Sexuality Committee Thursday, 1:002:00 p.m. at the Roundtable Luncheon
Spirituality Committee TBD
Personnel Preparation Committee Friday, 5:156:15 p.m. in Imperial I
Positive Approaches Committee TBD
Whole School Consortium Thursday, 4:457:00 p.m. in Monaco Room
PAGE 29 2 4 7TASK Newsletter, October 2000 INCLUSION IN UGANDA
Uganda's Universal Primary environment in most schools acces- Education (UPE), begun in sible. Special education teachers 1996, is the brain child of skilled in areas such as deaf education, President Yoweri Museveni. A former sign language, and visual and mental lecturer at the University of Dar-es- disabilities are inadequate or non- Salaam, Tanzania, Museveni is one of existent in most primary schools. Africa's pragmatic leaders who The classrooms are always too believes in the transformation and congested. In some areas classes are modernization of society through the Universal conducted under mango trees. elimination of illiteracy and the provision of education for all Primary The program has been criticized for irrespective of one's gender, ability or being short-sighted. It does not any other categorization. Education in explain what will happen to the tens of thousands of children after primary In practice, the Universal Primary Uganda level. The current ratio of teacher to Education program is not universal, BY ALEX NDEEZI pupil is 1:110. This is extremely high, but has a realistic tendency towards and not conducive to proper learning universality. Before implementation, and good standards. With this ratio, the policy was extensively discussed at the children with disabilities who various fora, including educational need additional support simply get institutions, in the cabinet and at the "swallowed" in the congested class- parliamentary level. Under this rooms. program, the government commits itself to providing primary education The negative attitudes of most for a maximum of 4 children per teachers towards children with family. In order to comply with disabilities are in many respects still a Uganda's constitutional requirements among children with disabilities. There hindrance to the success of the on affirmative action in favor of has also been increased awareness of the program. The program has almost marginalized groups, 2 of the 4 must be educational needs of children with become too expensive to run because the girls if a family has children of both disabilities, including the need for sign government is short of funds. The result sexes. In addition, if a family has a child language development. is that donors have been approached for with disability, he or she must be granted assistance. However, these donors often the highest priority in enrollment under However, the increase in enrollment rates come in with their own conditions, this program. has brought to light the enormous which may not be wholly in the interests challenges of providing education for all of the children or the program. The government pays the school fees for children, and the particular challenges of the children. It also provides grants to providing education to children with The Way Forward be spent on instructional materials, disabilities. extracurricular activities like sports, and There is a need for grants for children the management and maintenance of Challenges with disabilities to enable them to utilities like water and electricity. By the acquire mobility aids and other needed end of September 1999, six and a half The Universal Primary Education policy learning materials. The Ministry of million children aged 6 to 15 had emphasizes the mainstreaming of all Education has already issued a directive enrolled for primary school education categories of children. However, those on ensuring physical accessibility for one third of Uganda's total population. labeled as profoundly deaf are not yet children with disabilities in the construc- Total enrollment rates for all children benefiting from the program. Because tion of new buildings. Some schools have have tripled since 1996, and the enroll- the emphasis is on day schools, children already started implementing this ment of children with disabilities -- with visual and physical disabilities directive. almost half of whom are female -- has are finding it increasingly difficult to quadrupled. travel for long distances to and from school on a daily basis. Challenges Mobility aids like crutches, wheelchairs The increase in funding has helped to and white canes are not provided for reduce the illiteracy rateespecially in the program. Neither is the physical Continued on page 31 PAGE 30 2 4 8TASFI Newsletter, October 2000 OCTOBER 2000
Are you looking for Universal Primary Education in Uganda Continued from page 30 comprehensive staff development Even though the Universal Primary Education program has some weaknesses and faces some challenges, it has been hailed worldwide as a wonderful program, a reflection of political options for your commitment to education for all, and a role model of how the poorest countries of the world, such as Uganda, can eliminate district personnel? widespread illiteracy and develop their human resources by provision of affordable education. Let LRC_onsulting assist you. Alex Ndeezi is Uganda's first deaf member of Parliament. He is also the chairperson of the LRC offers resources for Uganda National Association of the Deaf. Mr. Ndeezi may be contacted at: PO Box 7339, paraeducators, partner Kampala, Uganda. teachers, administrators, assessment personnel, fl* and parents. ©Paraeducators: Life Lines in the Classroomsix training modules for new and returning paraeducators ©Melding a training module and guide for partner teachers working with paraeducators There is still time to share the tastes, sights an( sounds 4NgTriplicityan administrator's guide of your favorite places with others who may not have a to mentoring paraeducators chance to journey to your corner of the world! Make a donation to the TASH Silent Auction today! ©Maxim a guide for linking functional-contextual assessment Join with the Anchorage Convention & Visitors to instruction Bureau, the Baltimore Orioles, Blockbuster Video, Justin and Yoshiko Dart, Diverse City Press, Hard ©Students Firsta training module Rock Cafe, Hilton Anaheim, PEAK Parent Center, for parents as partners in the Special Reno Hilton, Van Gogh Music, TASH chapters, and Education process other supporters by making a donation to this exciting event. Proceeds from the auction will benefit the Visit our web site or call to learn more TASH Conference Scholarship Fund. The Fund is about ordering materials, our training- used to assist people with disabilities, parents and other family members to attend future TASH confer- of-trainers workshops, and hosting ences. a TOT in your district.
If you would like to make a donation or find out more www.lrconsulting.com details, please contact Priscilla Newton, Director of PMB 747 POB 6049 Marketing, at 410-828-8274, ext. 102; send an e-mail Katy, TX 77491-6049 to ([email protected]); or visit TASH's web site at PH: 281-395-4978 (www.tash.org) Fax: 281-392-8379
PAGE 31 0 A 9 TASHI Newsletter, October 2000 4 TASHGLCY2110UULID
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board Kathy Boundy, Ex-Officio diversity and quality of life for children and adults with disabilities. Bob Kafka Items in this Newsletter do not necessarily reflect attitudes held by individual Liz Healey, President members or the Association as a whole. TASH reserves the right to exercise edi- Donna Gilles, Vice President Jay Klein torial judgement in selection of materials. Doug Biklen, Chair, Executive Committee Debra Kunz All contributors and advertisers are asked to abide by the TASH policy on the Jorge Pineda, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Joe Wykowski, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Barbara Ransom Terms such as "people with mental retardation," "children with autism," and "in- Jacki Anderson dividuals who have disabilities" should be used. The appearance of an advertise- Michael Auberger Patrick Schwarz ment for a product or service does not imply TASH endorsement. Linda Bambara, Ex-Officio Jacqueline Thousand Wanda Blanchett CMIMCIallOpINFORMATION
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General Membership (individual) $103*. () Mastercard() Visa ) Discover Organization/Subscription (all organizations, schools, libraries, Card Number Expiration Date universities, etc. must use this category) $230*. Associate Membership (for people having an annual household Signature income of $25,000 or less, and for whom payment of the full () I would like to spread my payments out.Enclose 1/3 and you will fee would present a financial hardship) $60*. receive 2 additional invoices at monthly intervals. Lifetime Member $1000. Add $10 for postage costs for members in Canada and $25 for members outside the U.S. and Canada. Please make check payable to: TASH Group Discount Rate (When three or more individuals from the same Address: 29 W. Susquehanna Avenue, Suite 210 organization join as Intemational/Chapter or International Only Baltimore, MD 21204 members at the same time -- Save $20 per membership!) Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank. *These prices are for both International and Chapter memberships. For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column: 8274. L
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OCTOBER 2000 r- PRINTED IN THE U.S.A. VOLUME 26 ISSUE NUMBER 11 NOVEMBER 2000 rdv CM
Inside: Variables that Contribute to Self- Determination in Early Childhood; What Children and Families Need in Health Care from Birth through Adulthood; Re-thinking Guardianship; and Increasing Learning Opportunities for Children 4J NOVEMBER 2000
TABLE OF CONTENTS TASH wishes to acknowledge the From the Executive Director Page 4 TASH ResolutionontheUseof generous support of our newest Aversives Page 6 Variables that Contribute to Self-Determi- nation in Early Childhood Page 8 lifetime members A Parent's Perspective on Health Care from Birth through Adulthood Page 11 Re-thinking Guardianship Page 15 Pediatric Family Liaison Project Page 18 Eva Hamant Tempe, Arizona Increasing Children's Learning Opportunities Page 20 Judith C. Meckley Dwight, Illinois Lessons in Implementing Self- Determination Page 22 Richard A. Villa San Marcos, California
Lifetime membership entitles you to full international and chapter member benefits for your lifetime. The cost can be TASH (formerly The Association for remitted over several monthly payments. Persons with Severe Handicaps) is an international advocacy association of people with disabilities, their family If you are interested in becoming a lifetime member of TASH, members, other advocates and people contact Rose Holsey at 410-828-8274, ext. 100. who work in the disability field. TASH actively promotes the full inclusion and participation of persons with disabili- Please see page 5 of this Newsletter for new lifetime member rate. ties in all aspects of life.To receive an information packet, contact: TASH, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. Whom Do I Contact?? MISSION STATEMENT For issues of policy, chapter or committee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected] fatsTilSil For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at (410) 828 Stretching the boundaries of what is possible; TASH, Ext. 103, e-mail:[email protected] For questions about the 2000 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: Forging new alliances that embrace diversity; Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Advocating for opportunities and rights; For information on governmental affairs, call: Dan Dotson, Coordinator of Governmental Affairs, at (410) 828-TASH, Ext. 104, e-mail:[email protected] Eradicating injustices and inequities; For information on marketing and promotions, permission and reprints, or newsletter submissions and advertising, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, 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; The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter 29 W Susquehanna Avenue, Promoting excellence in services. 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]. r, 4 PAGE 2 TASH Newsletter, November 2000 NOVEMBER 2000
lostatop ARE YOU A UNIVERSITY vilsetsever PROFESSOR? 10011 TASH has a Student osslisse Membership Program! support
1. Go to igive.com or The program was developed through greatergood.com on the web. discussions with professors who 2. Follow the simple instruc- wanted to encourage professional tions to register as a new member. identity through student membership Before shopping, make sure to in a strong advocacy organization identify TASH as the organization while assuring that their students had Shop online you wish to support. access to enough issues of JASH for 3. Click on any of the hun- them to be able to complete a variety dreds of websites to shop as you of journal article review and compari- through normally would! son exercises they assign. igive.com or Up to 15% of your total purchases The package works like this: greatergoodcom will be donated to TASH. Professors can either assign TASH Other great deals available to you membership as one would a text as a member of igive.com and book or package of readings, or can TODAY! greatergood.com include offer it as an option. Either way, if ten or more students join, they We've made it convenient and receive a discount off the already low Discounts from select stores simple for you to shop online and associate member rate. The discount support the work of TASH at the amount increases as the number of Free shipping offers same time. Your purchases will cost students signing up increases. no more but TASH will benefit! An entire online mall filled Regardless of how many students with brand name mer- By shopping through igive.com or join, TASH provides a year's worth of chants ready to serve you! back issues of the journal to all greatergood.com, two popular students signing up under this plan. online shopping services that This means your students will start represent hundreds of retailers such the semester with a year's worth of as Amazon.com, Barnes & Noble, The Gap, Disney Store, Gift Shop atigive.comor cutting edge research on their shelf Baskets.com, J. Crew, Nordstrom, 24 hours a and can build their collection over greatergood.com the years to come. Under this plan, Petsmart, J.C. Penney and scores day, 7 days a week! Re- students receive all of the regular of others, you can have the ease member to go toigive.com and savings that come with shop- membership benefits during the ping online, and the knowledge orgreatergood.comfirst to coming year in addition to an that up to15% of every purchase access your merchant of extra full year's worth of journals! you make will be donated to TASH! choice from these sites. An introduction to TASH is likely to be one of the most valued resources Best of all, it's FREE to shop via Need help? Questions? igive.com and greatergood.com! you can offer students as they enter Call us at 1-800-482-8274, the disability community in their Your purchases will cost exactly professional capacities. To receive what they would have if you had ext. 106 or send an e- gone directly to the merchant's materials or to learn more about mail to [email protected] web site. TASH's Student Membership Pro- gram, contact Rose Holsey, 410 -828- Supporting TASH is just a 8274, ext. 100 or e-mail: HOW DO I SIGN UP? [email protected] click away and as easy It's as easy as 1, 2, 3! as shopping online! 'PAGE 3 3TASH Newsletter, November 2000 marin 4G11G 1313MD4ITUE DOG2M402
would not be tolerated if they were two United Nations Covenants will be applied to the elderly, school children, required to report to the U.N. on the use prisoners, or even animals. It is clear of aversives in their country just as they that individuals with disabilities who act are required to report on other human in ways that are dangerous deserve at rights abuses. least the same protections afforded prisoners against cruel and unusual In addition, the TASH Board recently punishment. Additionally, they have a approved a new resolution on the use of right to treatment that is both humane aversive procedures. This resolution and effective. clarifies TASH's uncompromising stand against these techniques. The text of that In recent weeks TASH has taken a resolution is included on page 6. 17Dorra 4ll a Emeaulnive Davaeou. number of important steps toward the BY NANCY WEISS goal of eliminating the use of painful In addition to the work on the U.N. stimuli to reduce behaviors that are statement and the new resolution, TASH deemed unacceptable. A group of TASH recently convened a historic meeting to TASH, Other Rights' Groups, members (including Rick Amado, Fredda explore various approaches toward the Combat the Use of Aversives Brown, Dick Cohen, Anne Donnellan, elimination of aversive procedures. At Gary LaVigna, Jeff Strully, and myself) TASH's invitation, representatives from have drafted a statement on aversives to the American Association of University TASH was the first national disabil- be included in the reporting require- Affiliated Programs, the American ity organization to take a position ments for two United Nations Covenants Association on Mental Retardation, the against the use of aversive proce- on human rights. We have been working American Psychological Association, the dures and this issue continues to be a closely on this issue with principals from major focus for TASH. Examples of two other international human rights O 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 o 0 aversive procedures include the use of organizations, Mental Disability Rights 0 TASH affirms the right of 0 electric shock, water spray, visual International and Physicians for Human O 0 O persons with disabilities 0 screening, prolonged restraint/isolation, Rights. ° to freedom from aversive ° and taste aversives in response to o 0 Eric Rosenthal of Mental Disability o procedures of any kind. 0 behaviors judged to be unacceptable. 0 TASH always has been, and continues to Rights International invited TASH to o TASH is unequivocally 0 draft this statement on aversives to be oopposed to the use of 0 be, unequivocally opposed to all use of 0 0 aversive procedures. included in reporting requirements for O aversive procedures un- 0 two of the most important United ("0 der any circumstance and °. Although some people have believed that Nations international human rights o calls for the cessation of 0 conventionsthe International Covenant such procedures are necessary to control c, the use of all such proce- °, dangerous or disruptive behaviors, it has on Civil and Political Rights and the O dures. 0 International Covenant on Economic, O 0 now been irrefutably proven that a wide O 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 range of methods are available which are Social, and Cultural Rights. if accepted, not only more effective in managing this will mean that for the first time, dangerous or disruptive behaviors, but every country that has endorsed these American University Law School, Am- which do not inflict pain on, humiliate, nesty International, Arc-US, The Autism or dehumanize individuals with disabili- (Chereis no question that somepeopl'e National Committee, the Joseph P. ties. Alternative approaches that are with disabilities have behaviors that are Kennedy, Jr. Foundation, Mental Disabil- proven to be effective attempt to identify dangerous or seriously disruptive. ity Rights International, the National the individual's purposes in behaving as Some people (both with and without Association of Protection and Advocacy disabilities) exhibit behaviors that Systems, Physicians for Human Rights, the he or she does and offer support and interfere with the quality of their lives education to replace dangerous or and the lives of the people with whom President's Committee on Mental Retar- disruptive behaviors with alternative they interact. We have a responsibility dation, and Senator Wellstone's Office behaviors that will achieve the to offer supports for people to change (Minnesota) were in attendance. Options individual's needs. behaviors that are dangerous, disrup- discussed included federal legislation, tive or interfere with their ability to strengthening state and federal regula- People with mental retardation and other achieve their goals for themselves. tions, initiating one or more human rights disabilities make up one of the most Our responsibility, however, is to do investigations/reports and encouraging this in ways that value, enhance and devalued segments of the population. more media coverage. \include people. Abuses are imposed on them which Continued on page 5 - r. I PAGE 4 TASH Newsletter, November 2000 UCIORZ 'II'D EMEgD4R713 BBI2E@40GI
TASIHI, Othen. Groups, 0 Another part of this effort is the Combat tine Use of Aversives collection of information which would document whether the use of aversives is Continued from page 4 a problem that is restricted to the U.S. or whether this is an international issue as well. If you have information regarding Finally, there are a few related efforts the use of aversive techniques in coun- underway aimed at collecting informa- tries other than the United States or on tion on the use of aversives from a laws or regulations prohibiting/restrict- DON'T DELAY! number of perspectives: ing the use of aversives in other coun- Become a lifetime tries, please forward this information as 0 We are trying to gather as much well (or let me know if you have a member of TASH information as possible on different suggestion of someone else to contact) so today! states' laws and regulations on the use of we can start to document the extent of aversive procedures. The issue is a the situation worldwide. complicated one because many states A new rate goes into have protections for people in the o Finally, TASH has long served as a developmental disabilities system but not clearinghouse for reporting on the use of effect January 1, 2001! for those in the mental health system; for aversives and restraints. If you know of Have you been considering becom- children but not adults; for residents of specific situations in which these ing a lifetime member of TASH, but state-run institutions but not for those techniques are continuing to be used, haven't gotten around to doing so? served in community programs, etc.If please contact me as well. We now The price of a TASH Lifetime you have access to your state's laws or maintain a resource directory of people Membership has not increased since regulations about the use of aversives or in every state and in almost every the inception of this membership restraints please send a copy to me (see Canadian Province who can assist in option almost twenty years ago. contact information in the next column). finding expert assistance in the develop- Lifetime memberships are currently ment of positive behavioral approaches. OWe also are trying to gather current priced at $1,000. This cost can be spread over multiple payments if position statements on the use of It is hoped that through all of these you choose. Once you are a aversives from as many national organi- means, TASH will establish the full lifetiu' me member, you never need zations as have them and to encourage arsenal of information needed to to pay TASEI membership dues those that don't to consider adopting eliminate the use of aversive procedures again. Lifetime members are such a position. If your group, or a group permanently. I have always thought it a recognized in the TASH Newsletter with which you are affiliated has such a sad commentary that there are Federal and in each year's conference statement please send me a copy or let laws in the U.S. that protect animals program. me know whom I should contact to from cruel behavioral training tech- obtain a copy.If your group has not niques but none that protect people. It is The TASH Executive Board has taken a position against aversives and our goal to see broad Federal legislation approved a price increase for would like TASH's support to help them enacted that will eliminate behavioral Lifetime Memberships from the to draft a statement of this kind, I will be techniques that are cruel and dehuman- current rate of $1,000 to $1,300, happy to assist. izing.I invite your participation in this effective January 1, 2001. We hope effort. 0 Additionally, we are collecting specific you will take advantage of the examples of the use of aversive proce- opportunity to become a Lifetime dures. If you have personal knowledge of Member of TASH at the current instances in which aversive procedures Nancy Weiss can be contacted by $1,000 rate. You can become a are being used or have been used phone (410) 828-8274, ext. 101, lifetime member by phone (call 1- recently (in the last five years or so) to by e-mail (nweiss @tash.org), or by 800- 482 -8274, ext. 0) or on our web control the behavior of a person with a fax (410) 828-6706. For more site (www.tash.org). To find out disability, please send me a short descrip- information about the use of more or to arrange to pay for your tion of the incident(s). Include informa- aversive procedures contact Nancy membership over several payments, tion on the type of setting, the state in for a copy of her comprehensive call Rose Holsey at 1-800-482-8274, which this occurred, when it occurred report on this topic. ext. 100 or and whether use of these techniques was send an e-mail to part of an a formal program. [email protected]. Conkui.edon page 6 PAGE 50 aTASH Newsletter, November 2000 FROM THE EXECUTIVE DIRECTOR
TASH RESOLUTION ON THE USE OF AVERSIVE PROCEDURES
Throughout the world, individuals Potential or actual physical side-effects Ice to the cheeks or chin 1 with disabilities are victim to whatsuch as tissue damage, physical illness, Teeth brushed or face washed with are termed "aversive interventions" to severe physical or emotional stress, and/or caustic solutions control behaviors that are associated death; Prolonged restraint through manual or with their disabilities. Aversive mechanical techniques (e.g. face-down procedures use painful stimuli in Dehumanization of the individual; four- or five-point restraint using response to behaviors that are deemed mechanical tie-downs or several staff unacceptable by their caregivers. All Significant discomfort on the part of applying physical pressure) aversive techniques have in common family members, staff or caregivers Withholding of multiple meals/denial the application of physically or regarding the necessity of such extreme of adequate nutrition emotionally painful stimuli. strategies or their own involvement in such interventions; Although it has been believed that such These techniques are inappropriately procedures are necessary to control used, not only to control dangerous Obvious repulsion and/or stress on the dangerous or disruptive behaviors, it has behaviors, but also to modify behav- part of observers who cannot reconcile now been irrefutably proven that a wide iors that are simply idiosyncratic such extreme procedures with acceptable range of methods are available which are (moaning or twisting one's hair), standard practice;' not only more effective in managing unusual (tics or rocking) or are dangerous or disruptive behaviors, but inconvenient to caregivers (getting out Rebellion on the part of the victim which do not inflict pain on, humiliate, of one's assigned seat or refusing to against being subjected to such procedure;or dehumanize individuals with disabili- perform a task). ties. Alternative approaches that are Permanent or temporary psychological proven to be effective attempt to identify When an individual is at imminent or emotional harm. the individual's purposes in behaving as risk of hurting him/herself or others, he or she does and offer support and brief physical restraint to prevent The types of aversive procedures used on education to replace dangerous or injury may be necessary. Brief physicalpersons with disabilities include, but are disruptive behaviors with alternative restraint under these circumstances is not limited to: behaviors that will achieve the not treatment. It is used to assure individual's needs. safety in an urgent situation. Treat- Electric shock applied to the body (e.g. ment is meant to reduce or prevent arm, leg, or hand) for the purpose of further occurrence of the behavior by discouraging the specific behavior it increasing the individual's competencefollows by causing pain [not to be con- THEREFORE BE IT RESOLVED, THAT in dealing with the circumstances that fused with electroconvulsive therapy TASH, an international advocacy provoke the endangering behavior. (ECT) used to treat severe depression; a association of people with disabilities, Individuals with disabilities who act inprocedure that is also subject to misuse] their family members, other advocates ways that are dangerous deserve at Extremely loud white noise or other and people who work in the disability least the same protections afforded auditory stimuli field, affirms the right of persons with prisoners against cruel and unusual Forced exercise disabilities to freedom from aversive punishment. Additionally, they have a Shaving cream to the mouth procedures of any kind. TASH is un- right to treatment that is both humane Lemon juice, vinegar, or jalapeno equivocally opposed to the use of and effective. pepper to the mouth aversive procedures under any circum- Water spray to the face stance and calls for the cessation of the Aversive procedures are often used as Placement in a tub of cold water or cold use of all such procedures. part of a systematic program for showers decreasing certain behaviors. They are Slapping or pinching with hand or used without the consent of the victimimplement and typically, without the informed Pulling the hair consent of a guardian. Aversive Ammonia capsule to the nose 1 TASH (formerly, The Association for procedures have some or all of the Blindfolding or other forms of visual Persons with Severe Handicaps. (1986). following characteristics: blocking Resolution on the Cessation of Placement in a dark isolated box or Intrusive Interventions. Obvious signs of physical pain other methods of prolonged physical experienced by the individual; isolation v; PAGE46" TASH Newsletter, November 2000 NOVEMBER 2000
-4 Areyoulooking for comprehensive University of staff development options for your Maryland district personnel? College of Education Department of Special Let LRConsulting assist you. Education LRC offers resources for paraeducators, partner The Department of Special Education teachers, administrators, at the University of Maryland, College assessment personnel, Park, is currently recruiting students in and parents. need of certification and those who would like to pursue a masters de- ©Paraeducators: Life Lines in the gree in special education with an Classroomsix training modules for emphasis in severe disabilities. We new and returning paraeducators are offering full tuition remission as ©Melding a training module and well as book reimbursement to all full guide for partner teachers working and part-time students. with paraeducators 4%.©Triplicityan administrator's guide In addition, we are also seeking quali- to mentoring paraeducators fied applicants in search of part-time ©Maxim a guide for linking assistantships; living stipends and functional-contextual assessment benefits are available on a competi- to instruction tive basis. ©Students Firsta training module for parents as partners in the Special Education process Members of underrepresented groups are encouraged to apply. Visit our web site or call to learn more about ordering materials, our training- of-trainers workshops, and hosting Please contact Dr. Frances Kohl, a TOT in your district. Project Director Low Incidence Personnel Preparation Grant at www.lrconsulting.com (301) 405-6490 or via e-mail at PMB 747 POB 6049 Katy, TX 77491-6049 [email protected] PH: 281-395-4978 Fax: 281-392-8379 PAGE 7 TAM Newsletter, November 2000 0 rrt SELF-DETERMINATION
VARIABLES THAT the early static. It changes across time as the childhood years. context and the internal motivations of CONTRIBUTE TO SELF- Perhaps an early the child changes. The final assumption DETERMI NATION step in this suggests that self-determination is effort is to influenced by the nature, disposition or IN EARLY CHIILDHOOD further define personality of an individual child. Each what self - child brings to the world a unique set of determination characteristics. Recognizing and under- BY ELIZABETH J. ERWIN, Ed.D. and FREDDA might look like standing these unique characteristics will BROWN, Ph.D.. in early child- allow us to support and facilitate an hood settings individualized and unique path of self- for young determination beginning in early child- children with hood. and without disabilities. Self-Determination is a Function of a Complex Set of Interacting Variables Identification of key variables, interacting adults influences, and cva't\ 1"1 2,/VAs operationalizing the concept as it Peers ,escov'scs pertains to early childhood settings are CONTFX much has been written on the important first steps in the e &feats Physi f topic of self-determination and et, ca/ conceptualization of research. 'top I, 41ep, its importance to the quality of .)0"5' SELF e5), life of individuals with significant Three foundations, or assumptions, were DETERMINATION disabilities. However, we have seen much at the base of our effort to operationalize 2,AdcPersonality less attention paid to this topic when the concept of self-determination. First, ovalcovt:c referring to young children with disabili- Ski-\\5 CHILD .3 we felt that self-determination could not A 0 ties. Brown and Cohen (1996) suggest be viewed in isolation; it is a concept 131,ysiCal that many programs for young children that must be contextually described. abilities with disabilities reinforce compliance Self-determination is not a single act or with teacher directives as opposed to behavior. It is, to some degree, a function providing opportunities for children to of, and enmeshed within a complex set practice choice-making, problem solving, of interacting variables. Second, self- Conceptual Framework and other behavioral skills essential for determination is a dynamic phenom- self-determination. Other authors have enon; self-determining behavior is not Our understanding of self-determination used the term "democracy" to describe in young children has been shaped by that sense of empowerment and freedom three variables: context, dynamic, and that should be available to young the child. Because of the constant ebb children in their day to day lives (Erwin Identifying the states, traits, and skills and abilities of a child are and flow of daily life (e.g., people, & Kipness, 1997; Greenberg, 1992; places, events, and child-related charac- Hendrick, 1992). Both the concepts of an important link in creating a full and meaningful picture of teristics), opportunities for self-determi- self-determination and democracy nation, as well as obstacles to self- acknowledge the critical importance of self-determination in young children.h Each child brings to determination, will constantly change. ensuring that young children, regardless The following variables provide a of ability, are active participants in the world a unique set of characteristics. Recognizing and framework for understanding the making age appropriate and meaningful complexities that contribute to self- decisions regarding their own lives. understanding these unique characteristics will allow us to determination in young children. Because self-determining young children support and facilitate an indi- would most likely lead to empowered, vidualized and unique path of self-determining adults, it seems logical self-determination beginning in to explore self-determination issues in early childhood. Continued on page 9 PAGE 82 5 8 TAM Newsletter, November 2000 SELF-DETERMINATION
Variables That Contribute ment. The initiation or response to subsequent behavior. There are many to Self-Determination in opportunities for self-determination play variables and dynamics that define the Early Childhood a large role in creating an on-going story context in which self-determining of what happens and why within a behaviors occur. These dynamics, Continued from page 8 classroom setting. When a child initiates braided together, present a story of self- an act of self-determination, it may either determination within a classroom. be supported or not-supported by others Perhaps the story can be best described Context in his or her environment. How others as a continually changing narrative respond will either contribute to support-with opportunities for self-determination, Just as it is widely acknowledged that no ing self-determination (e.g., "I see you as well as obstacles to self-determination, two children are the same, it is also would like to play in the sandbox. Go continually and naturally, weaving in and widely accepted that no two learning right ahead!"), or attempt to prevent self- out throughout the day. We can, how- environments are the same. Because of determining behavior (e.g., "Please sit in ever, influence this narrative. differences within the organization, your seat now; it is not time to play in the structure, and energy in a classroom, it is sandbox."). A challenge to educators is In addition to variables of context and important to identify the environmental to support self-determination even when dynamics, there is one more critical variables that can impact on self-determi- circumstances present obstacles ("I see variable, the child, to consider when nation opportunities. There are numer- you would like to play in the sandbox. painting a broad and colorful picture of ous environmental variables that not onlyWould you put our picture of sandbox on self-determination. vary from classroom to classroom, but our daily schedule? Then, when we're also vary within any one classroom finished with our story, we can play in Child across the day, the week, and the year. the sandbox."). Examples of such variables include: (a) A child's disposition will naturally have a number of adults present, (b) number of A child dramatic impact on our understanding of children present, (c) type of activity, (d) may self-determination since no two children materials, (e) places, and (f) activity respond are exactly alike. Self-determination is format (e.g., large group, small group, in a self- likely influenced by at least the following individual). deter- three variables: (a) states, (b) traits, and mined (c) skills/abilities. States refer to feelings These variables naturally have an impact way to a (e.g., happy, angry) or moods (e.g., on opportunities to be self-determining, stimulus cranky, tired) or other conditions of or in some cases, present obstacles to (e.g., a directive, choice, or request) being (e.g., hungry, sick) which impact efforts of self-determination. For ex- presented by an adult. The child's on a child's behavior. These states are ample, the game of 'Simon Says' may response (e.g., to cooperate, not cooper- constantly changing. The impact of these present different, and perhaps fewer, ate or ignore the instruction given) then types of events is discussed extensively in opportunities for encouraging self- provides a context for the adult's subse- the positive behavior support literature. determination than a game or song such quent behavior. Again, the adults' The term "setting events" refers to those as "If You Are Happy And You Know It". behavior will either support or present anexternal conditions that influence the Or, a large group activity may be easier obstacle to the child's self-determining child's perception of the current environ- for some children to initiate certain types behavior. That is, adults will either ment and his behavior. For example, of behaviors that may be consistent with perceive the child's behavior as "initia- Carr and his colleagues (Carr, Reeve & self-determination. Yet for other children, tion" (and likely reinforce self-determi- Magito-McLaughlin, 1996) describe the a small group or 1:1 situation may make nation), or judge the behavior as "non- scenario of a child given an instruction to such initiations easier. Understanding compliant" (and likely discourage the button up his coat. Under typical those contextual conditions that promote self-determining act). circumstances the child may quickly self-determination and those that may comply with the request. However, if the challenge self-determination for each In addition to adults within the environ- child has a cold, he may display uncoop- child would allow us to structure ment (e.g., teachers, assistants, related erative behavior when given the request. classrooms in more informed and service providers, parents, volunteers, In this scenario, the uncooperative supportive ways. etc), peers also provide stimuli (e.g., behavior might be a function of the directives, choices, requests) to the child. setting events that is, the illness. Dynamics These stimuli lead to some kind of response from the child (e.g., to cooper- There are numerous variables to consider ate, not cooperate, or ignore) which related to the dynamics of what is provides the context for the peer's occurring within a classroom environ- Continued on page 10 PAGE 9 TAS Newsletter, November 2000 j9 SELF-DETERMINATION
Variables That Contribute assured. In addition, if a teacher does settings. These variables are constantly to Self-Deterrnination in not respond to a self-determining changing as a function of the changing Early Childhood behavior (e.g., "I want to use the bath- context, dynamics, and child characteris- room now") made by a child with high tics that naturally occur. We hope that Continued from page 9 self-esteem, the child may likely attempt by better understanding these variables additional ways of getting his needs met we can be more reflective and intentional (e.g., asking another adult, crying, in our support of self-de-termination in repeating the request). It is not as likely young children with severe disabilities. Traits are characteristics that contribute that a child who is very timid or shy to a child's personality (i.e., flexible, shy). would try multiple ways of getting his A child's individual personality and needs met after a teacher does not disposition will likely play a part in how Elizabeth Erwin and Fredda respond to a request. a child perceives and ultimately responds Brown may be contacted at the to a particular situation. For example, a Queens College of the City The third child-related characteristic that child who tends to be very energetic and University of New York, School of has an impact on self-determination has active may perceive a teacher's direction Education. Questions related to to do with a child's skills and abilities. to sit down for circle time as threatening this article may be sent to Dr. The skills and abilities a child uses within or controlling. Another child in the same Erwin at the classroom and other natural environ- class could be given the same direction
PAGE 1026 0TASH Newsletter, November 2000 A PARENT'S PERSPECTIVE ON HEALTH CARE
What Children and Families Need in Health Care from Birth through Adulthood: One Parent's Experiences and Advice BY KRIS SCHOELLER
My son Christian was born a and no major brain scarring. And I stand the Physician's Desk Reference. I robust and healthy nine-pound valued the support of the director of the took night classes in educational law and boy with an Apgar score of 10. preschool as she held monthly meetings writing IEP's (Individual Educational Within four months of his birth we were with parents to teach us how to take care Plans). thrown into the world of neurology, of ourselves and to celebrate the accom- psychology, pneumoencephalegrams, plishments. Even after moving from When he was seven years old, Christian's CAT scans, MRIs, multiple medication Wisconsin to Minnesota and then to teachers and therapists said he was very options and many, many hours in Massachusetts, I continued to consult inappropriate socially. One physician hospitals and clinics. Christian was with this original team for support. wanted to label Christian as psychotic having seizures identified at the time as and place him in a school for children psychomotor, now called complex The middle years were extremely with psychiatric disorders and prescribe partial. Throughout his childhood and difficult. Our family moved several timesadditional medication.I felt that his adolescence he would experience every and establishing new teams was grueling. anger and frustration was due to lack of type of seizure, including status Christian experienced months of over- any success or verbal encouragement. epilepticus. I was a 24-year-old, unedu- medication and a loss of language. I Christian and I flew back to Minnesota to cated, first-time mother. Although I was blamed myself for lack of knowledge. that original team for further evaluation. confident in my ability to parent and His medical team pushed beyond his and We received a diagnosis of Early Onset excited about the role of motherhood, I my limits. One experience led to leaving Pervasive Developmental Disorder. was in no way prepared to deal with the the hospital against medical advice Returning home, we filed due process emotional, psychological, and educa- (AMA). The original MRI machines werechallenging the schools for appropriate tional demands of making responsible designed to hold the head in place. placement and understanding of decisions for Christian. Christian had such fear of the procedure Christian's disability. We struggled with a that the decision was made to medicate $10,000 attorney fee and months of Christian's first medical, therapeutic, and him. After four hours in the radiation emotionally-charged legal battles. At the educational teams were very supportive. waiting room and enough medication to same time I was pregnant with our fourth For them, parents were equal team put a grown man to sleep, Christian child. members in every decision that was made continued to fight.I looked at him and about programs, services, and events.I saw that intense fear and cry for help, appreciated their advice as they empha- and I knew that if I allowed them to CResearch supports that parents sized the importance of allowing him to continue to inject more medication, I (earn the most from other parents. participate in any childhood activity; my would kill his spirit.I picked him up off They speak the same language, first pediatrician said, "The scars from the cart and carried him out AMA. have immediate trust, and under- falling during a seizure will heal, the stand the emotions. They've scars from keeping him from activities I had to learn how to trust my own learned how to work with the many will never heal." I appreciated the fact intuition and knowledge. I studied many agencies and programs that will be that his neurologist wasn't embarrassed hours each week about neuropsychology, needed to support the day-to-day to feel and show emotion, like the time the function of the brain, the impact of activities. he greeted us in the hospital hallways sensory integrative therapy and pattern- with excitement and genuine care when ing.I had to learn to read and under- the good news came about no tumors Continued on page 12 PAGE 1 16 TASH Newsletter, November 2000 A PARENT'S PERSPECTIVE ON HEALTH CARE
What Children and I took my pain and my anger and quested to be on very competitive men's Families Need in Health frustration and I decided to work with leagues. He lives in his own apartment Care from Birth families to support them through their with a friend and is looking for a partner. process. At first my advocacy was He still has seizures, obsessive/compul- through Adulthood defensive and demanding. I was not a sive disorder, some autism and mental Continued from page 11 team player.I saw the world as them retardation. It was the many doctors, against us. That is not a productive way nurses, therapists, teachers, family to develop supportive teams. members, friends, and the perseverance We found a of Christian himself that worked together school for At age 18 Christian had a new team to make this outcome possible. Christian working with him new teacher, new with doctors, new therapist, new, friends. The Advice from the Trenches gardens tables began to turn. His physician and always talked to Christian and listened to So, after 25 years as Christian's mother animals, a what he wanted. For instance, Christian what have I learned about what parents small heard of a new medication on TV and and children with disabilities need? teacher-to- called his neurologist to request a While my experience and needs do not pupil ratio, change; she met with us and carefully reflect every parent, I think some of the and a told him all the pros and cons. She let recommendations listed below will be director (the 80-year-old woman who him be the leader in this decision. I helpful to professionals who work with started the school) who believed that listened and knew this was his decision any family such as ours: self-esteem was top priority and that and that I was now needing to step back. hands-on learning was most successful His teacher became his best friend; he * Connect parents with other parents as for all kids. It worked. I drove 80 miles developed a trusting and caring relation- soon as a child is diagnosed with a a day in order for Christian to receive ship that went far beyond his profes- disability or chronic illness.I often this education. The stress to our family sional job description. I now, again, had wished that hospitals would hire parents was incredible. Where was that support- a team who put him first and who to be available for emotional support, and ive team? genuinely cared about him as a man, not also for the connections needed upon as a disorder or disability. Remembering leaving the hospital. Research supports I was also very sad. I wanted to make life this brings me to tearsI was so ex- that parents learn the most from other better for my firstborn and everything hausted and so grateful for this team parents. They speak the same language, seemed bleak. Only a parent who has surrounding Christian, and it has had have immediate trust, and understand experienced this can image the everyday lifelong effect on both of us. the emotions. They've learned how to pain of putting your child to bed and work with the many agencies and wanting nothing more than to take this programs that will be needed to support struggle away. I could do nothing. The the day-to-day activities. lack of control is powerful. Provide parents with * Provide parents with specific and yet Preadolescence brought status specific and yet under- understandable information. What is epilepticus, hours of seizing and the loss standable information. Tuberous Sclerosis or Down Syndrome or of speech and body function for Chris- What is Tuberous Sclerosis Aspergers? Parents not only need the tian. For three years we had monthly or Down Syndrome or name of the disorder, but what caused it status, so that we had to administer Aspergers? Parents not only and how it affects daily life. This is a very touchy component because some- Valium rectally.It was either that or need the name of the bring him into the hospital, and I wanted times a physician provides the "worst disorder, but what caused it case" scenario, and there is always a wide nothing to do with hospitals. It was and how it affects humiliating for Christian. One night at 2 range of functional capacity within each daily life. a.m. as I stood holding him on the label. There is also the tremendous counter when he was ending a status and impact of environment and internal had lost all speech, I asked him to draw characteristics of the child. If informa- me a picture of what he felt. He drew a tion is not available on site, assist the circle with a face on it and then a square parents in finding it. box around it. My interpretation was that Today, Christian is a 145-pound robust he felt locked in a box during these man. He works full-time and is respected times. for his skills as a prep chef. He is an avid bowler with a 180 average, often re- Continued on page 13 , l, PAGE 12 s 1;) TASH Newsletter, November 2000 S RENT'S IDESPECTOVI2©lWEALTH CARE
What Children an * Talk to the child/adolescent. I felt that tropic drugs, but a friend or mentor to Families Need in Health Christian was invisible many times. As talk to or opportunities to feel they the child gets older, it is especially belong, have a chance to give back, and Care from Birth important to talk directly to him or her. explore and develop their own goals. through Adulthood Young people must develop a sense of Continued from page 12 control and autonomy in order to become* Celebrate the gains. Many children and healthy adults. Christian knew himself. youth meet with specialists related to His diagnosis of mental retardation did their disability or chronic illness and do * Understand the need for emotional not exclude him from the ability to give not experience a pediatrician or family support. Physicians, nurses and medical meaningful information. practice doctor who celebrates their gains staff are often the only contact for parents in school or home. Tell parents how who are in medical crisis with their OOOOO wonderful their children are and how far children. Not only are parents exhausted Parenting a child with a disability they have come. Christian worked physically, they need to know they are has provided many opportunities harder than any of my other children to "good parents" and an occasional and challenges, with most of the learn how to talk, cut with scissors, take acknowledgment that this is hard stuff. hardships coming from the lack of a bus, have a job, and speak for himself. respect, care, and value provided A nurse who sat with me and listened or Those are celebration events. the more vulnerable and interde- a doctor who let there be silence so I pendent in our culture. could gulp the lump in my throat before I Parenting a child with a disability has had to talk, or just a touch on the provided many opportunities and shoulder, meant a lot. challenges, with most of the hardships * Provide normal development informa- coming from the lack of respect, care, * Give parents permission to take time tion to parents and children. During the and value provided the more vulnerable for themselves and other members of the adolescent years, talk about sexuality, peer and interdependent in our culture. family. Parents may meet with numerous support, healthy relationships, vocational Christian has taught me more about specialists in a day and be handed many and education aspirations. This will also determination, resilience, honesty, and different sets of care plans. This can be help parents move beyond the disability living in the moment than I will ever overwhelming and discouraging. Sib- or chronic illness and begin to think teach him. And I thank those people lings often are the last to feel included about all the possibilities that they think along the way who encouraged and and special because so much emphasis is of with their other children. I was so supported us. placed on the person with a disability. afraid that Christian would experience Provide families with the information failure at everything that I wanted to keep Kris Schoeller is a Training Coordinator about respite care and other in-home him next to me so I could protect and with the Institute on Community Integra- supports, and with the encouragement defend and support everything. I forgot tion, University of Minnesota, Minneapolis. that taking time is valuable for the family. that a healthy person needs failure and She may be reached at 612-627-4036 or by triumphs, aloneness and togetherness, e-mail at [email protected] * Make parents an ally. I knew the most choices and most of all a sense of self, about Christian. I knew his spirit and his separate from mom. Helping parents find safety nets so that they can step back unspoken feelings.I wanted to be part of Reprinted with permission from Kris the decisions that were made about and watch their children survive and thrive is a huge gift. Schoeller, IMPACT, Volume 13, testing, treatment, surgery or medication. Number 2, Summer 2000, published I was not educated in the same way as * Check for mental health! Many children by the Institute on Community the professionals, but I was knowledge- Integration (UAP), Research and and youth struggle with being different able beyond the disease. Today, the many Training Center on Community and having a disability. Many times they systems that work with families that have Living, University of Minnesota, are depressed, confused, isolated and children with disabilities are encouraged Twin Cities. to create policies that promote parents as bullied because of the disability. Undiag- partners. Still, I sense that there is also nosed emotional or psychological needs an ongoing education of all professionals prevent them from planning for the that promotes professional distance and a future, and dreaming dreams of having hierarchy that continues to place parents their own job and family and friends. lower in this ladder of knowledge. As a Parents may know that the child is parent, I can respect a professional's depressed, but may think that it is expertise in a given field, but I will trust understandable given the disability and you for your humanity and respect for not pursue any support. Often support my child and me. does not mean psychotherapy or psycho- 13263TAPAGE EH Newsletter, November 2000 NOVEMBER 2000
UNIVERSITY OF MAINE Center for Community Inclusion, UAP Maine's Center for Interdisciplinary Education, Research and Community Service in Disability Studies
Project Specialist Positions Available
The University of Maine's Center for Community Inclusion, UAP, has a number of positions available, includingtwo (2) full time Education Specialists to join the Center's Inclusive Education team; two (2) Early Care and Education Specialists,a Mental Health Specialist and a Health Care Specialist to join the Center's Early Childhood team.
Responsibilities: The responsibilities of the Specialists include providing community education, technical assistance, materials development/ dissemination and assisting with research and evaluation activities to support the high quality and meaningful inclusive early care and education of young children with disabilities in early care environments and childcare settings and students with disabilities in school.
Responsibilities include planning and conducting workshops, seminars and providing onsite technical assistance to early care and child care providers, schools and related services throughout the state. Must be able to work a flexible schedule including occasional weekends and evenings, as needed. Statewide travel, normally requiringa valid driver's license, is required.
Knowledge and skill qualifications: Master's Degree in education, special education, early childhood special education, or related field is preferred. A combina- tion of four years of education and experience, equivalent to a Bachelor's degree, and demonstrated experience working in inclusive early care and childcare settings and schools are required. The Mental Health Specialist requires a Master's degree and substantial experience providing positive behavioral supports toyoung children with serious behavior and social/emotional challenges and their families; candidates with psychology, social workor early childhood special education certification/licensure are preferred. The Health Care Specialist requires a Bachelor's degree in nursing, state licensure as a RN and substantial experience; a master's degree in nursing and several years' experience in pediatric nursing preferred. These positions require excellent communication and organizational skills and the ability to work collaboratively with other faculty/staff in the provision of technical assistance, materials development and community education. Preference will be given to those with professional experience in continuing education and/or technical assistance. Appropriate background checks will be required.
Salary Range: These are full-time, fiscal year appointments contingent upon external funding. Annual salary basedupon education and experience, with full University benefits.
Review of applications will begin November 27, 2000 and will continue until the positions are filled.
Send cover letter specifying position(s) for which you are applying, curriculum vitae, proof of licensure,as required above, three letters of recommendation, and transcripts to:
Pamela Flood or Linda Labas, Co-Chairs, Project Specialist Search Committee Center for Community Inclusion, UAP University of Maine 5717 Corbett Hall Orono, Maine 04469-5717
For information about the Center please visit: http://www.ume.maine.edu/-cci/
The University of Maine is an Equal Opportunity I Affirmative Action Employer
PAGE 14 2C 4TASH Newsletter, November 2000 GUARDIANSHIP
human rights of individuals with disabili-process assumes that all people have ties. New laws were passed in recogni- preferences, regardless of their level of tion of the need to integrate citizens with disability. Through this process, the disabilities into our communities, person's preferences are determined by including the Developmental Disabilities any method possible. In some cases, Assistance and Bill of Rights Act (DD observations of the individual's behavior Act)', the Individuals with Disabilities by those closest to them are used to Act (IDEA)2, and the Americans with determine preferences. Such preferences Disabilities Act (ADA)3, the most are then honored as long as they are not significant civil rights legislation ever harmful to the individual. This process of passed for people with disabilities. All determining preferences and choices these laws have promoted inclusion of enhances the dignity and self-determina- individuals with disabilities into their tion of individuals and is far more own communities and brought new reliable than having a court-appointed, awareness of the abilities and contribu- single person to make all decisions with tions of people with disabilities to our or without the input of the individual society. with a disability.
Guardianship laws began to change as Re-thinking well. Many states introduced a list of due Guardianship process protections for people who became subject to guardianship petitions Education of those recommending BY DOHN HOYLE and such as the right to hearing, lawyers, and guardianship is needed as many KATHLEEN HARRIS independent evaluations. Most revised professionals and lay people, as well laws also express a clear preference for as court personnel, believe guardian- partial guardianships for limited deci- ship is the only way to resolve many sion-making power rather than full issues that can be handled through Guardianship, at one time seen as a guardianship over all possible life less intrusive methods. We need to benign way to "protect" people with decisions. stop applying a legal solution to disabilities, is now seen as an intrusion personal issues that can be handled into a person's basic civil and human through a person-centered process. Even with these changes in the law, rights and a legal process to be avoided. individuals with disabilities still suffer Guardianship was originally used to from a lack of due process because of handle and control property and property rights for individuals considered incom- paternalistic attitude and duplicities in guardianship proceedings that confront petent (or in the language of most early persons with cognitive disabilities or As the law established person-centered statutes "imbeciles, idiots, feeble- those with difficulty in communicating. minded, insane and cretins"; "gamblers planning and individuals' rights to make In fact, persons alleged to have commit- and ner-do-wells" were sometimes also decisions about their treatment options, ted criminal acts have their due process Self-Determination Initiatives began included). Guardianship of the Person rights far more zealously guarded prior todeveloping. The Robert Wood Johnson was added as an afterthought to the being deprived of their right to life, Foundation provided funding to 19 states duties of a Guardian of the Estate. liberty or the pursuit of happiness. for Self-Determination Initiatives Before they lose their money or are demonstration projects. The projects Change has come about as part of incarcerated, (in sometimes remarkably sprung from reforms that question the questions that have been raised since the 1970's about the way our society in similar types of institutions), they are almost total control public funders and providers have over the life choices of general views and treats individuals with afforded real due process protections. individuals with disabilities and their disabilities. It was in the '70's that the While these legislative changes have beenfamilies. In that system, funds and first class-action suits were filed regard- decisions are allocated to providers. ing the deplorable conditions in institu- taking place, person-centered planning tions. Such legal actions highlighted the has become the planning process for Individuals with disabilities and their families have little or no say about which general abuse of the rights of individuals people with disabilities. In Michigan, it has even become law.4 The person- providers are to supply services or what with disabilities. Courts all over the centered planning process is defined those services should be. Changing this country began ordering community- generally as a process of planning for and based services and concerning them- supporting an individual that honors the selves with the enhancement of dignity individual's preferences, choices and and the protection of basic civil and abilities. The person-centered planning Continued on page 16 PAGE 15n TASH Newsletter, November 2000 L) 3 GUARDIA SHIP
Stanley S. Herr, Professor of Law, Univer- they become unhappy with the decisions Re- thinking sity of Maryland School of Law has being made. Many state laws will allow studied guardianship laws over the for such powers of attorney and also Guardianship world. He states: recognize that the level of informed Continued from page 15 consent needed to execute such a "A number of countries have adopted document is lower than that needed for new legislation in recent years to mini- other legal arrangements under law. As mize the use of guardianship, to impose an example, in Michigan the standard for imbalance of power and control is the only its least restrictive alternatives, and executing a medical power of attorney is goal of self-determination. Decision- to introduce other innovations . ..The that the individual must be "of sound making by the individual is key to this imposition of guardianship posed mind," which is the same standard as effort. Obviously, appointing a guardian important ethical, legal and practical seen in the realm of Michigan wills and to make decisions for the individual can problems for the disability rights commu-testaments. In order to execute a will, defeat this process. However, asserting nity ...The ethical questions involve "average mental capacity at the time of that each individual should make their ideas of paternalism, liberty, prevention the execution of the will is not necessary own decisions doesn't mean that each of harm and exploitation, beneficence, to its validity. A lesser degree of mind or individual doesn't need help, assistance and the power relationships between capacity is requisite to execute a will than and support. guardian and ward. Finding better to make a contract covering the same answers will implicate vital principles of subject matter."8 The Iowa Supreme Court has recognized self-determination, including freedom, that outside supports for an individual authority, support and responsibility."' Another example of devising alternatives may negate the need for guardianship. is the concern about who will take care of In making a determination as to whether Thus, support systems in most states are the individual's money if they are totally a guardianship should be established ... exploring alternative means to guardian- unable to handle it themselves. The the court must consider the availability ofship and ways to restrict the effects of themajority of people with developmental third party assistance to meet a... imposition of guardianship on the disabilities are recipients of Supplemental proposed ward's need for such necessitieschoices of individuals with disabilities. Security Income (SSI). For these and 5 ... other governmental benefits, the govern- These efforts have resulted in the ment will designate a "payee" -- someone Tom Nerney, Executive Director of the development of many alternative meth- to receive and disburse the money for the Center for Self-Determination has stated: ods to handle decision-making that assistindividual if the person is determined individuals with disabilities and their incapable of managing the funds him or "We have to reject the very idea of advocates. For instance, the use of herself. A guardian of the estate or incompetence. We need to replace it durable powers of attorney are used in conservator would be a duplication of with the idea of 'assisted competence.' order to designate a person to discuss this function. If a substantial amount of This will include a range of supports thatand make decisions about medical money comes into the individual's life, will enable individuals with cognitive decisions, living situations, confidential- there are trust documents that can be disabilities to receive assistance in ity issues and other areas of concern. In drafted that can protect the governmental decision-making that will preserve their this way, family members or others who benefits and still use the funds to provide rights..."6 have always assisted the individual in an enhanced life for the individual. A making such decisions can continue to trustee or co-trustees can be designated Thus, just as supports have evolved since do so without filing a petition to become to distribute the funds and see that the the '70's to assist individuals with guardian and actually take away the rightindividual's needs and desires are met. disabilities to participate in education, of the individual to make such decisions. Such a trust can specify that someone employment, housing and other commu- The power of attorney allows the visit the person and assure that the nity opportunities, supports are now individual to give that power to someone,individual is satisfied with his or her evolving to assist people in decision- and they can also take away that power if living situation and support systems. making. "Assisted living" has replaced This is more than the imposition of a institution living, and "supported guardian or conservator can do for an employment" has provided more job individual and gives more peace of mind opportunities. "Assisted competence" is to parents who worry about what will now continuing the evolution that happen to their child when they are enables people with disabilities the gone. A knowledgeable attorney should dignity and freedom to develop and be consulted about these trust docu- participate in the lives they want and ments. choose. Continued on page 17 7, PAGE 1 ei- Li 0 TASH Newsletter, November 2000 GUARDIANSHIP
Re-thinking Guar ia is Continued from page 16 p
withrilir-LNVID[1@@ The above are major alternatives to guardianship, and there are many more that can be devised. There are as many -7JULO Mfflre@ alternatives as there are issues. Education of those recom- What You Need mending guardianship is needed as many professionals and lay people, as well as court personnel believe guardianship To Know About is the only way to resolve many issues that can be handled Participant through less intrusive methods. We need to stop applying Driven Supports a legal solution to personal issues that can be handled A must-have curriculum designed for self advocates, through a person-centered process. professionals and others that teaches about Putting an end to the systematic removal of rights and the self-determination. Developed by the Human concomitant removal of protections for people with Services Research Institute it includes easy-to-read disabilities needs to be a priority. This would mean a and thorough descriptions of service systems, how different way of doing business. Those who care about an they work, and how they are funded. Self- individual with a disability and those who make their living determination & participant driven supports are because of individuals with disabilities, have an obligation explained, as are strategies to analyze state systems to discover what people like and don't like, what their and create change. desires and preferences are. We should employ the many Includes: alternatives which currently allow people to avoid guard- ianship altogether. Ultimately, we can use the framework Curriculum of person-centered planning and self-determination to 170 pages of high quality Buy both easy-to-read text with the obtain the optimum choice making. We can assure curriculum& individuals with disabilities, including those with cognitive exercises$120.°° overheadmasters disabilities and disabilities that impair their communica- Overhead Masters tion, access to life, liberty and pursuit of happiness. Plus, only$169.00 we will have eliminated an unnecessary barrier to individu- 248 illustratedpages$60" als' opportunity to seek their piece of the American dream. Save si1.00 whenYOUbuy Dohn Hoyle is President and CEO of the Assoiation for Commu- No Risk 30 Day both! nity Advocacy in Ann Arbor, Michigan. He has been active for Money Back Guarantee! 30 years with numerous advocacy organizations on behalf of individuals with disabilities and has been a long-time proponent of alternatives to guardianship. Kathleen Harris is an attorney ROOMfleVe41171131 &seam and disability advocate in Clarkston, Michigan. Kathleen has ThInSarrid Sok= carrotillOM2yRa.tatrd represented individuals with disabilities in all areas of disability law, including guardianship. To order call: 0 For further information, or to contact Dohn or Kathleen, call the Association for Community Advocacy at 735-662-1256. Or for aPE'{' Catalogover 200 other disability training videos and 42 U.S.C. § 6012 CD-ROMS on inclusion, advocacy, 2 20 U.S.C. §1400 et seq ... 3 42 U.S.C. 12101 et seq self-determination, and more MCL 330.1712; MSA 14.800 (712) write: In the Matter of Hedin, Iowa Supreme Court, (1995) PDA New 2001 Catalog o Attn: TASH Ad 6 Common Sense, Issue 6 - 1999; a publication of the National P.O. Box 2038 0 Syracuse, NY 13220-2038 Program Office on Self-Determination, University of New Hampshire, Insititute on Disability, funded by the Robert Wood Johnson Foundation S ' Id. I .1 8 Bean v. Bean 144 Mich 599, 108 NW 369 (1906). f/4 PAGE 17 TASH Newsletter, November 2000 PREPARING PARENTS FOR ADVOCACY
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Families of young children with The Pediatric Liaison decreases the significant disabilities often stress for the families by doing the struggle through a complex following: system of medical establishments and procedures, experiencing frustration Pediatric * Staying with families in the waiting at their efforts to gain meaningful area and the Recovery Room; information and to advocate success- * Engaging children and families with fully for their child. Confusion is FamilLiaison toys and materials throughout the compounded when a family does not y waiting pre-operative time; speak the language of the medical * Modeling in asking questions about staff, or has traveled to get the Project the child's condition, treatment, and medical care, leaving a support of BY SALLY J. DEITZ, Ph.D. prognosis; family and friends behind. Here we * Coaching family members through describe an innovative solution to the pre- and post-operative period to these challenges that is being used by assure them of the safety of their child ORBIS International on their flying and routine nature of their child's DC-10 eye hospital. This flying eye reactions during this time; /ChM l IIVIII /111'/I IIIIIIIIILIIIIII III11II ilh hospital travels worldwide approxi- * Engaging the translators whenever mately ten weeks per year. Services needed to answer each family's are devoted to pediatric eye surgery in programs in local hospitals around the questions; developing countries, often serving world. * Assuring that family members take children with medical or physical breaks for lunch, water, rest, and conditions other than visual impairment. During these programs, visiting faculty refreshment by providing assistance in demonstrate techniques for treating eye the family member's absence As professionals in the field of childhood diseases that are of greatest concern to * Visiting the recovery room regularly to disabilities are aware, visual impairment their local colleagues. During the past report back to the family member how in various forms occurs frequently and two years, ORBIS has also undertaken the the surgery is progressing; and rarely occurs in isolation. Not only are establishment of several long-term, * Creating an atmosphere of comfort children with visual impairment often country-based programs in order to focus and calm in the waiting area, making it diagnosed with other health conditions, its efforts in regions where there is a high child and family friendly. but children with various levels of incidence of avoidable blindness and a disability are often found to have visual willingness to develop quality eye care Children are impairments as well. Having the best systems. There are now ORBIS country selected for possible eye health and refractive error offices in India, Bangladesh, China, and surgery during correction assists every child to learn Ethiopia. Within the next two years, a "pediatric better and to function more indepen- country program office will open in weeks." These dently. This article describes an innova- Vietnam. weeks typically tive international effort to not only assist include cases families with the process of surgery for ORBIS staff on the DC-10 hospital have of strabismus, their children, but also to teach them to become increasingly aware of the need to glaucoma, become advocates for their child as they facilitate the surgical experience for traumatic negotiate medical situations in the future. families. In discussion, the need for a cataracts, and Pediatric Family Liaison became clear; a retinal ORBIS International is a nonaligned, person to mediate communication detachment. A typical pediatric week nonprofit, humanitarian organization between children, families, and ORBIS comprises four to six surgeries per day, dedicated to saving the sight of both staff during the weeks in which pediatric with children returning to the local children and adults. They do this through surgeries take place on the ORBIS DC-10. cooperating hospital for post-surgical education and hands-on training for This new role assists the plane staff to care. Often these children travel great ophthalmologists and a wide spectrum of meet the needs of families, engages the distances from rural areas for the other medical personnel. ORBIS has families and their children throughout conducted training programs on board its the waiting periods of each surgical day, DC-10 flying eye hospital for 18 years, and eases the stress of the experience for and has sponsored hospital-based all concerned. rt Continued on page 19 C..) PAGE 18 TASK Newsletter,November 2000 PREPARING PARENTS FOR ADVOCACY
Pediatricanti% Liaison Project would often leave the designated waiting Continued from page 18 area, seek a translator to answer their questions, or observe their child's surgery on one of the monitors. When this University of Toledo happened, it created confusion and surgery, and many times they and their miscommunication between families and families have waited a few years for this airplane staff, all of whom were already College of Education opportunity to be treated. For many of managing a highly orchestrated medical these families, this medical experience is schedule in a small space. the first time they have been exposed to a Tenure Track Faculty Position hospital setting, anesthesia, or surgery. Under the best of circumstances a child's surgery is difficult for all concerned. Area of Special Education Through this project ORBIS seeks to alleviate the surgical pre- and post- Significant Disabilities operative stress for all families involved, and also to assure smooth flow of com- The purpose of the ORBIS munication amongst medical staff, DC-10 project is not only to children, and caregivers. Tenure track position. Mature Assistant or make the surgical procedure Associate Professor (Significant Disabili- easier for the entire family, While the purpose of the project is not ties).Established faculty member to but it is also to model for only to make the experience on the ORBIS coordinate undergraduate licensing and them the advocacy that they DC-10 easier for families, it is also to advanced degree programs in area of will need throughout their model for them the advocacy that they significant disability, with emphasis on children's lives as they will need throughout their children's lives persons with mental retardation and negotiate continued associated disabilities.Candidates should medical treatment. as they negotiate continued medical treatment. ORBIS recognizes that have an established record of teaching, although this medical intervention may publication, conference presentations, grant be a part of each family's life for a short support, and professional service. The area time, the families are preparing for a of significant disabilities has had U.S. DOE lifetime of advocacy for which they will personnel preparation and/or State of Ohio use negotiating skills. demonstration project funding since 1989. The process of receiving eye surgery on Application deadline is February 23, 2001. the DC-10 is highly structured, and for the Salary and benefits are competitive. families, the day of surgery poses unique stresses. When children arrive on the Please send curriculum vitae and 3 letters of plane for the designated surgery, each with reference to: one family member, they spend much of the day in the waiting area. This is also the Dr. William Gray only room on the plane that does not Coordinator of Faculty Search Committee receive live transmission of surgeries as College of Education Questions about the work of ORBIS they are performed. Because the children Snyder Memorial Intl. may be directed to Sally Dietz at have been prepared for surgery, they have 2810 W. Bancroft ([email protected]) or call Dr. Dietz not had food or water since the previous Toledo, Ohio 43606 night, and will not have it until after the at (212) 244-2525, ext. 211. surgery. Often the wait for the day's Please contact Dr. William McInerney via e- surgery can last until mid-afternoon. mail ([email protected]) or phone at (419) 530-2284 with specific Thus, each family member is faced with a questions re: area of significant disabilities. confused, frightened, and hungry child, isolation from other family members, The University of Toledo is a state- language barriers with everyone but the supported, comprehensive doctoral level medical translators on each team, and institution and an equal opportunity, uncertainty about what to expect during C. affirmative action employer. the child's surgical procedure and afterwards. Prior to establishment of the Family Liaison role, family members 2 6 PAGE 19 TASK Newsletter, November 2000 FAMILY AND COMMUNITY LIFE
The Children's Community life providing Learning Opportu- children learning opportuni- nities Early Child- Increasing Children's ties includes such things as hood Research Institute is a Learning Opportunities in the family routines (e.g., doing 5-year initiative funded by errands), play activities (e.g., the U.S. Department of Context of Family and playgrounds), recreation and Education, Office of Special Community Life sports activities (e.g., swim- Education Programs. ming), and art and entertain- BY CARL J. DUNST, Ph.D and Institute staff are identify- ment activities (e.g., ing, developing, and MARY BETH BRUDER, Ph.D. children's theater). evaluating ways of using family and community life Descriptive Studies as sources of learning opportunities for infants, To learn about the make-up toddlers, and preschoolers of family and community life with or at-risk for delays in their devel- of young children, we conducted in- opment. Institute staff are especially children's learning activities, and the depth descriptive studies of more than interested in identifying everyday kinds of practices associated with child, 200 families of children with disabilities experiences that provide children parent, and family benefits. This article or delays, children at-risk for socioeco- learning opportunities which strengthen highlights the kind of studies that we are nomic reasons, and children not-at-risk child capabilities and promote new doing. for any reason. The children and families competencies. were from Alaska, California, Connecti- Natural Surveys cut, Hawaii, North Carolina, New The value and importance of learning in Mexico, and Wisconsin. The participants different early childhood programs has Two national surveys of nearly 330 were diverse in terms of their cultural, been well documented. Our main focus, parents were conducted in 48 states, ethnic, and socioeconomic backgrounds; therefore, is children's learning that Puerto Rico, and Yap in Micronesia. One place of residence (urban, rural, subur- happens as part of daily living, family survey looked at family life as sources of ban); and child age and developmental rituals, family and community celebra- children's learning opportunities, and the status. Research staff visited the families tions, special occasions and events, and other looked at community life as up to 12 times over a 6-month period to just about anything and everything else sources of learning opportunities for interview the parents about their family that a child experiences intentionally or children. The surveys were completed byand community lives, observe the incidentally as part of family and com- parents and other caregivers of children children in different family and commu- munity life. in early intervention programs, early nity learning activities, and to gather childhood special education programs, information about the variety of learning Family life includes a mix of people and Early Head Start, and other early child- experiences, opportunities, events, and places. These people and places provide hood programs (e.g. Even Start, Parents so forth that happened for the children. a child a variety of learning opportunities as Teachers). like eating during meal times, splashing Findings water during bath time, listening to Findings from both surveys show that show that adults share stories, and learning greeting family life is made up of 11 different children skills at family get-togethers. Commu- categories of learning opportunities, and participate in nity life also includes a mix or people that community life is also made up of 11 many and places that provide children many different categories of learning activities. different different kinds of learning opportunities. Learning opportunities available to social and These include the people and things children in family life includes such physical experienced on neighborhood walks, things as parenting routines (e.g., child's settings as playing at a park or in the woods, bedtime), child routines (e.g., brushing part of their children's festivals and fairs, nature teeth), literary activities (e.g., telling family and centers and farms, and so forth. child stories), parent/child play (e.g., lap community games), and socialization activities (e.g., lives. These Research Studies family gatherings). different settings in turn provide many different kinds of learning opportunities. Institute staff are conducting different 4 kinds of studies to learn about sources of Contained on page 21 PAGE 20 TAM Newsletter, November 2000 FAMILY AND COMMUNITY LIFE
Increasing Children's Learning Opportunities in the Carl J. Dunst is Co-Director of the Orelena Hawks Puckett Insti- Context of Family and tute in Asheville, N.C. Dr. Dunst may be reached via e-mail at Community Life
We are continuing to conduct compara- Signature tive studies and practice studies in our quest to document the everyday learning Ship to: opportunities available to promote Name children's abilities. Address City/State/Zip or Postal Code Country E-mail Address Clip this coupon and mail it to: TASH, Yearbook Order, 29 W. Susquehanna Avenue, Suite 210, Baltimore, Maryland 21204 or fax your order to 410-828-6706 0emmemmememmemmemmememes11E11011111111119 aff11901311 PAGE 22 71 TASH Newsletter, November 2000 CENTER '4g31ON HUMAN POLICY
systems change. For example, to get what you want. Self-advocates in many of the states, have been talking about self-determina- even those tion issues for years, but there are still a already lot of people who don't want to listen, having who think in old ways, and are used to individual having control." Participants stressed the budgets, it has importance of those without disabilities taken most of the taking more time to really listen to 3 years to set up people with disabilities. mechanisms, such as fiscal intermediaries, Within the projects, people have that will give people strategized regarding how best to increased options for promote agency change that will be managing their own conducive to opportunities for self- money, if they so choose. determination.People in project states Many states still have have worked to help build the principles This article is based on a paperwork and informational of self-determination into agencies. In two-day National Program materials that are not accessible doing so, some have felt it has been best Office on Self-Determination to people with disabilities. Some to begin working with one or a small Annual Project Directors' Meeting that states are beginning, together with self- number of agencies to identify and/or took place in Fall 1999. Participants advocates, to develop more consumer- develop success stories. Then, these included staff of the National Program friendly information and resources. agencies, and success stories, can be used Office, project directors and other States are struggling with the challenges to assist other agencies to change. In representatives from grantee states; of running "dual" systems of services as working toward agency change, it is representatives from technical assistance they make the transition to individual- critical to acknowledge the efforts that states; representatives from People First ized supports based on self-determina- are currently being made by agency staff: of Tennessee, The Self-Advocacy Associa- tion principles. In addition, within many As one state project director commented, tion of New York State, Inc., Speaking for service systems, individuals and families "Many people are moving along. It is Ourselves, Pennsylvania, and the often still have very limited real choice of important to recognize these steps." National Parent Network on Disabilities service providers. While it is crucial that agency adminis- (NPND); and representatives of the trators adopt a vision of self-determina- Human Services Research Institute tion, it is equally important for others in OOOOO (HSRI) and the Center for Outcome the agency to do so. This includes se Analysis (COA). The article highlights Overall, there is recognition that the people in key gatekeeping roles, such as themes of the discussion, which are move toward self-determination will be case managers, and it includes direct based on nearly 3 years of work imple- difficult for many agencies, as it will support staff. In particular, participants menting self-determination. involve having significantly less power stressed the ongoing need to search for and control. As one participant put it, ways to adequately compensate and Recognition that systems change is "We need to work on breaking down validate direct support staff. complex and takes a long time programs. The people I know who are Overall, there is recognition that the The initial Robert Wood Johnson leading self-determined lives are not in move toward self-determination will be Foundation grants to 19 states were for 3 programs. People in programs don't difficult for many agencies, as it will years. During this time, as a result of get a life." involve having significantly less power project efforts, many individuals with and control, as well as a shift in roles, disabilities have gained significant moving beyond providing programs for control over their lives, and have people. As one participant put it, "We experienced many positive life changes Thus, overall, while there have been need to work on breaking down pro- as a result. For example, in one state, it many significant changes initiated as a grams. The people I know who are was reported that, "For the first time, result of the self-determination projects, leading self-determined lives are not in consumers and family members really there are also still many problems within programs. People in programs don't get a came to the table as equal partners." the service system, and many hardships life." While these changes are significant for people with disabilities in dealing for agencies, there is evidence that it is At the same time, the experience across with the system. As a self-advocate beginning to happen in some of the all states is that 3 years was just time commented, "Right now, the way the project states. enough to make the initial steps toward system is, you still have to fight so hard r Continued on page 23 PAGE 22 TASH Newsletter, November 2000 CENTER SON HUMAN POLICY
Lessons in Implementing People have learned to think of self- everyone has access. For instance, Self-Determination: determination for everyone-not just participants found that, initially, many people with disabilities. For example, people who first expressed interest in National Program Office on the project director from one state self-determination were those who are Self-Determination reflected, "Experience has taught that strong advocates themselves, or who Continued from page 22 those regions that have been the most have strong advocates in their lives. A successful are those that take a very challenge will be to expand access to self- broad view, looking at self-determination determination, particularly to those in for all people, including families, agency congregate facilities. During the course of systems change, it is staff, direct support providers, and so important to have a variety of ways to on." Another person added, "The self in Focus on incorporating self-determi- keep focused on the values and mission. self-determination is all individuals." nation principles into the system, but Without this, according to a state guard against self-determination administrator, "at any given moment, Part of trying to explain what self- becoming institutionalized or system- people are likely to revert back to the old determination is involves explaining atized way of doing business, particularly what is different about it. For instance, Participants expressed a desire to build during times of stress."Even with this, in one state they are emphasizing to self-determination principles into agency participants agreed that systems change people that "self-determination is not justpolicies and practices, waivers, and other will take a long time, perhaps 5-10 years a person-centered plan, but a person- aspects of the system; but, at the same and more. At the same time, they agreed centered way of life." Also, people are time, they recognize that self-determina- about the need for a sense of urgency in concerned about being clear that it tion is not a part of the system. Partici- efforts to promote self-determination. involves radical systems change, "not justpants expressed concern that some tweaking the system."Finally, partici- people have a misconception of self- Importance of defining self-determina- pants agree on the need to be clear that determination as a service or program. tion broadly "it is not a program, or a checkbook; it is As one project director explained, People in the project states have defined also not about having to make the right "We've gotten away from using the term self-determination broadly, "based on the choice right now because this is your self-determination because of some of the individual."Definitions include a focus only chance." misconceptions about it as a service or on assisting people to have the "capacity program-and we've focused more on to determine and direct their lives," Even though self-determination may be values that we want for all people." "having the power to direct your own defined broadly, this does not mean that Another person emphasized that talking support," "having information and everyone has access to it. Many states about "pilot projects," or "special resources," an "array of support options,"began with pilot projects for a limited initiatives," also tends to promote the and "responsibility." Emphasis is placed number of people, or began with a focus idea of a program, in which some people on being inclusive, rather than exclusive. on a particular group of people, such as are in and some are out. "The only way "We have to be careful not to foster the those on the waiting list for services. that we were successful in having people idea of who is in, and who is out-it is for Even in states where self-determination isget out of the project mentality was by everyone." available statewide, this does not mean saying there are no longer any special initiatives. There are no longer the haves and the have nots-self-determination is just the way of doing things." Finally, people spoke against systematizing self- determination. "We need to be cautious about institutionalizing anything again; when we do that, we do that with the assumption that we are 'there' again and have the answer." Another person added, "The reason self-determination works is because it is not part of the Working in coalition or partnership demands that those who are used to system. While state agencies want to having power and control give this up. As a result of states' self-determina- support self-determination, it won't work tion projects, there are the beginnings of new and broader coalitions in if it becomes part of the system." states, with increasing inclusion of people with disabilities. Participants specified that people with disabilities and families must be central to these coalitions and partnerships. Continued on page 24 PAGE 234.0 r".1 i3 TASH Newsletter, November 2000 CENTER ON HUMAN POLICY
Lessons in Implementing use of Medicaid waiver funds to pay People raised a number of concerns Self-Determination: for room and board (e.g., this is being related to Supplemental Security Income, done in some places but not in others) as well. SSI is a major issue in relation to National Program Office on SSI in relation to housing and employ- housing. For example, one person Self-Determination ment commented on being penalized for Continued from page 23 Personal Care Attendant (PCA) saving for a down payment for a home. services and people labeled with cogni- Also, people talked about feeling threat- tive disabilities operation of fiscal ened about employment and loss of Recognition of the complexity of intermediaries benefits. Some states are beginning to control/power issues work with the Social Security Adminis- The experience in the self-determination People discussed the need to identify and tration (SSA) to resolve these issues; it projects is that, for some individuals, share success stories about resolution of was suggested that, as for Medicaid there have been major shifts in control these and other issues. States have begun issues, it is important to identify positive over money, along with a high degree of to deal with these issues, but now there isexamples, and to have further dialogue satisfaction. Such shifts in control of need to share these success stories and with the SSA about this. money are an important component of strategies within states, as well as self-determination. However, experience between states. Need to build coalitions/partnerships has also taught that this alone is not As a result of the projects, there are the sufficient. One panelist emphasized the While some participants feel that beginnings of new and broader coalitions importance of recognizing that power is Medicaid is a major barrier to self- in states, with increasing inclusion of often, though not exclusively, linked withdetermination, others do not see it as a people with disabilities. Many partici- money. "Power lies in other places, too, major barrier. Overall, two issues related pants emphasized the need to continue and is not just related to money" An- to Medicaid were emphasized. First is building diverse coalitions and partner- other person commented, "Simply taking the need for it to be seen as a funding ships. Working in coalition or partner- the money from the service system and stream, not a program. "If Medicaid is ship demands that those who are used to dropping it into the mix of people going to work in terms of individually having power and control give this up. around the person doesn't resolve all the tailored services, it has to be seen as a Participants specified that people with issues about power." In addition, it is funding stream." The second issue is disabilities and families must be central recognized that people need support in how Medicaid is applied. "More than to these coalitions or partnerships. Self- assuming control over money and other anything else, in terms of Medicaid, is advocates need to be included in all decisions. "We've seen some situations that it is applied very differently in aspects of this work for self-determina- where people have the money, but don't different situations."People proposed tion, including the most technical. As have a circle around them-they are kind that there be dialogue with the Health one self-advocate put it, "We can help of abandoned with the money" A self- Care Financing Administration (HCFA) you to make the issues clear, because we advocate added, "Some people who have about these issues. As a part of this live with them."Recognition was given lived in institutions all their lives may notdialogue, it is important to identify to the critical role that self-advocates know how to go about making decisions examples of how and where Medicaid have been and are playing in systems for themselves, so we need to make sure issues are being resolved in ways that are change. For example, self-advocates they get support in figuring things out." flexible and promote self-determination. have played a critical role in institution Further, participants addressed the need In particular, also, there is need to closure in Tennessee and Pennsylvania; to respect people's decisions. One person identify positive examples of how fiscal in New York, recently, it was self- commented, "I need to be able to make intermediaries are working in relation to advocates who demanded increased my own choices, even though there guidelines for spending money, tracking opportunities for self-determination from might be risks.I need to have that money, and so on. It was also pointed the Commissioner. At the same time, experience of choosing, even if it's not out that it is important to recognize the participants pointed out that it is crucial what you think would be best." flexibility that exists within Medicaid, that there be support (financial resources, and to simultaneously identify and access, accommodation) for involvement Recognition of the role of Medicaid, address other problems in the system of self-advocates. Supplemental Security Income (SSI), and beside Medicaid. For example, Medicaid other technical issues. Many participants includes provision for choice of vendoredNeed for a sense of urgency spoke to the importance of addressing services. "The problem with the system Through the 2-day meeting, people technical barriers to self-determination is that there aren't any choices, so we repeatedly mentioned the need for a posed by Medicaid, SSI, and other need to focus on expanding options." sense of urgency in promoting self- regulations. Some of these include: 2 741 Continued from page 25 PAGE 24 TASH Newsletter, November 2000 CENTER 0i WOMAN P0110Cif
Lessons in Implementing Minnesota, supported by the U.S. Self-Determination: Department of Education, Office of Parent Center National Program Office on Special Education and Rehabilitative Services, National Institute on Disability 2001 Conference on Inclusive Self-Determination and Rehabilitation Research (NIDRR), Education Continued from page 24 through Contract No. H133B980047. "Kids Are The Bottom Line" Members of the Center are encouraged to express their opinions; however, these do January 18-20, 2001 determination and the accompanying not necessarily represent the official Denver, Colorado systems change. As one person put it, position of NIDRR and no endorse- For more information, contact PEAK "We need to quicken the pace as much as ment should be inferred. Parent Center at 719-531-9400 possible, and bring as many different stakeholders along as possible." Partici- pants felt that there is need to quickly #11M 1M MI MI MI 1211 NI 11111a1 112 1111 lin =I'705 lial0 EN III MI MI NM MI 111 build a critical mass or groundswell of people who support self-determination, I so that it will not be jeopardized by oppositional forces.It was acknowl- edged that "there are still many people Want tet out there who are opposed to this, and who don't believe in the principles of double exsur self-determination." Some participants cautioned about going too quickly, and not being inclusive. However, consensus for your was that there is need to work so that people see real change within their advertisin lifetimes.
This document was produced at the dollars? request of the National Program Office on Self-Determination. For further information, contact: Consider placing an ad in the TASH Newsletter. In Chas Moseley, Director addition to your printed advertisement, we will place your National Program Office on Self-Determi- ad on TASH's web site at no additional cost to you! nation Self-Determination for Persons with Ad rates range from $100 for a one-quarter page B&W ad Developmental Disabilities to $400 for a full page B&W ad. For more information 7 Leavitt Lane, Suite 101 Durham, NH 03824-3533 about TASH's new Online Classifieds contact Priscilla Newton, Director of Marketing, at 410-828-8274, ext. 102 or send an e-mail to
Lessons for Understanding Difierentiated I one Teaching O Learning in Heterogeneous Classrooms
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The Institute on Community Integration (UAP) For a catalog of our 270+ publications, call 612/624-4512 or visit our Website at http://ici.umn.edu.UNIVERSITY OF MINNESOTA
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PAGE 26 TASK Newsletter, November 2000 NOVEMBER 2000 Standards & Inclusion: Canwehave both?
DOROTHY KERZNER LIPSKY, PH.D. AND 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 environ- ment 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. Through a dynamic and powerful presentation Drs. Lipsky and Gartner discuss: The Consequences of Higher Standards, The Seven Factors of Successful Inclusion, The Reauthorization of I.D.E.A., The Restructuring of Our Schools. Visit schools across the country and observe first- AVOWS: DOROTHY ALAN ManuscriptsWanted. hand how the learning needs of all students are KERZNER LIPSKY GARTNER eS,see fOrguidelines, being successfully met in general education WWWnl'r environments. Learn how special education is a service ABOUT THE AUTHORS: not a location. Understand that the inclusion of students is Dorothy Kerzner Lipsky is Director of not determined solely by where they are placed, but by their full and com- the National Center on Educational plete access to the same curriculum as the general education population. Restructuring and Inclusion, and Alan Whether a regular or special educator, this video is a must for pre-service Gartner is Dean for Research. Both are and inservice training. at The Graduate School and University Center, The City University of New York. 1998, VHS, 40 minutes Order #VSIN-TASH1 $99.00
gcroner ,artner COMPANION BOOK: Inclusion and School Reform: Transforming America's Classrooms DOROTHY KERZNER LIPSKY, PII.D. AND ALAN GARTNER, PH.D. BEIMBEIBIE:13 AND SCHOOL REFORM 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 understanding of the process of school reform, as well as a vision for the 21st century. 1997, soft cover, 414 pages Order #INSR -TASHI $36.95
Order from: National Professional Resources, Inc., 25 South Regent St., Port Chester, NY 10573 Phone: 1-800-453-7461; Fax: 914-937-9327; World Wide Web Site: www.nprinc.com. Amex, Visa, MasterCard, prepaid and purchase orders accepted. Shipping & handling: Add $4.50 per book; $5 per video. For book orders of $50 and above, add 10 % not to exceed $40. Canada add 20% to all orders. Federal Tax ID #132619258. Free catalogs available upon request. Authors Wanted: For manuscript submission guidelines, call Acquisition Editor: 1-800-453-7461.
PAGE 272 7 7TASH Newsletter, November 2000 TASHNEWSLETTER
Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, diversity and quality of life for children and adults with disabilities. Executive Board Kathy Boundy, Ex-Officio Items in this Newsletter do not necessarily reflect attitudes held by individual Liz Healey, President Bob Kafka members or the Association as a whole. TASH reserves the right to exercise edi- Donna Gilles, Vice President Jay Klein torial judgement in selection of materials. Doug Biklen, Chair, Executive Committee Debra Kunz All contributors and advertisers are asked to abide by the TASH policy on the Jorge Pineda, Secretary use of people-first language that emphasizes the humanity of people with dis- Ming-Gon John Lian, Ex-Officio abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Joe Wykowski, Treasurer Tia Nelis individuals" refer to characteristics of individuals, not to individuals themselves. Nancy Weiss, Executive Director Liz Obermayer Terms such as "people with mental retardation," "children with autism," and "in- Jacki Anderson Barbara Ransom dividuals who have disabilities" should be used. The appearance of an advertise- Michael Auberger Patrick Schwarz ment for a product or service does not imply TASH endorsement.For a Linda Bambara, Ex-Officio Jacqueline Thousand copy of TASH's publishing and advertising policy, please call 410 -828- 8274, ext. 102. Wanda Blanchett GaMDT3a001)INFORMATION r
Name: Address: City/State/Zip: Telephone: Fax: ( ) E-mail: Is the above your work address home address other
Please Check Appropriate Categories ( ) Educator/Teacher (K-12) () Related Services Provider (not more than three): ( ) Government Personnel () Self-Advocate ( ) Administrator/Adult Services ( ) Legal Services Provider ( ) Social Worker () Administrator/Education () Occupational/Physical Therapist () Speech/Language Pathologist () Administrator/Other () Parent/Family Member ( ) Special Education Teacher/Support ( ) Adult Service Provider/Staff ( ) Personal Assistant Specialist ( ) Advocate/Friend ( ) Professional/Public Policy Advocate () Staff Development/Trainer () Behavioral Specialist ( ) Professor/Instructor-College/University () Student ( ) Case Manager ( ) Psychologist ( ) Supported Employment ( ) Early Childhood Services ( ) Regular Education Teacher/Administrator () Other
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"As you go about working to put the values of human dignity, social justice, peace and )2- compassion into practice, and calling upon society to live up to these same ideals, I am confident that you will continue to make a world of difference in the lives of individu- als and families around the globe. You, as an organization, have been doing so for twenty-five years."
From the keynote address of Dr. Oscar Arias
ALSO INSIDE: 2001 Call for Presentations; TASH Public Policy/Legislative Update; Nominations for JASH Editor
7 DECEMBER 2000 /JANUARY 2001
TABLE OF CONTENTS
From the Executive Director Page 3 Join the Governmental Affairs Update Page 5 2000 TASH Annual Conference Highlights Page 8 TASH Conference Keynote Address: Dr Oscar Arias Page 13 Update 2001 Call for Presentations Page 18 In Memoriam: Waddie Welcome.Page 23 E-mail Nominations for JASH Editor Page 26 Education Corner: Lack of Enforcement of IDEA Page 28 Listserve!
This is a forum for TASH members, friends and supporters TASH (formerly The Association to discuss the latest issues affecting people with disabilities. for Persons with Severe Handi- The listserve provides members and other interested per- caps) is an international advocacy association of people with dis- sons with an opportunity to identify and connect with abilities, their family members, others who share particular interests,.expertise and experi- other advocates and people who ences. work in the disability field. TASH actively promotes the full inclu- sion and participation of persons You can subscribe directly from TASH's web site at with disabilities in all aspects of www.tash.org, or you can send an e-mail to: life.To receive an information
Supporting progressive legislation and The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities maize these litigation; and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite Promoting excellence in services. 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].
PACE 2 4-1 TASH &sum DEC. 2000 /JAN. 2001 FROM THE EXECUTIVE DIRECTOR
Create and maintain a presence on be charged with reviewing the results of Capitol Hill, build relationships with the membership survey and, based on this legislators and staff; input, making a recommendation to the board regarding a new name. Work toward closing institutions and other segregated living and work settings Awards - Plan for the Future: The and work toward assuring that people with Board reviewed the current awards to disabilities have meaningful employment assure that as a group they reflect and living opportunities; TASH's priorities.It was agreed that we should combine the Positive Ap- Promote inclusion within higher proaches Award and the Collaboration education; Award into one "Achievement in Advocacy Award." This could go to a From the Executive Director Promote enforcement of IDEA; parent, self-advocate, professional, or BY NANCY WEISS other advocate who had made signifi- Promote passage of MiCASSA; cant achievements in furthering the TASH's annual conference is not mission of TASH for full inclusion/ only an opportunity to reconnect Fiscal development; participation. A new award category with old friends, learn new was added: The Outstanding Chapter things, share your ideas, and network Increase membership; Award. We will continue to present the with people who share your passions, it Media Award, the Alice Hayden Award, is also the setting for the TASH Execu- Develop working relationships with The Thomas Haring Award, and, as tive Board's annual meeting. The committees to assure that they have the appropriate, the Lifetime Achievement Executive Board meets four times a support needed to accomplish tasks; Award. Not all of these awards will year, twice by teleconference (Spring and, necessarily be presented each year. The and Fall) and twice, in-person (Summer Reviewer of the Year and the Emma and Winter). Here are some recent Improve relationships with and Rose Scholarship will be continued as Board activities which may be of support of chapters. well.Recipients of these awards will be interest. listed in the conference program but Time was spent at the conference in will not be announced at the awards New officers were elected. Donna Miami Beach capturing the activities of ceremony. Gilles is TASH's new President; Jacki both the chapters and the committees Anderson is our new Vice President; in working toward these priorities.The Newsletter Topics: Each year the Board Jorge Pineda will serve as Treasurer; Board began planning for a TASH discusses topics for the upcoming year's Barbara Ransom as Secretary and Doug leadership day that will be held next newsletters. The Board suggested the Biklen will serve as Chair of the year on the Wednesday prior to the topics below for this year's newsletters. Executive Committee. conference. Committee chairs, Chapter If you would like to be a contributor to officers, staff, Board members and otherany of these issues, or if you have New Director of Governmental Affairs.interested members will come together suggestions of authors for us to contact Jamie Ruppmann was introduced to the to participate in a day of joint strategic on any of these topics please contact Board as the newly hired Director of planning. Priscilla Newton, the Newsletter Editor, Governmental Relations. Jamie makes at [email protected] or by phone at: a wonderful addition to the TASH staff New Name for theNewsletterThe 410-828-8274, ext. 102. and you'll be hearing lots from her. Board selected a new name for the Read more about her on page 5 of this Newsletter. Watch for the next issue of Balancing choice, safety and risk; self- Newsletter. the Newsletter that will unveil "TASH determination; consumer control; Connections" as the new name of our managed care, long-term services and The Board agreed to continue to work monthly magazine. supports; on these priorities for this year: New Name for TASH: The Board Providing progressive residential Collaborate/build support and unanimously agreed that TASH is in need supports; housing; homeownership connections with general educators and of a new name. A plan of action was family issues; general ed. organizations; discussed to address the issue of a name change. A membership survey has been Leisure & recreation issues; Collaborate/build support and completed. The Board established a connections with other disability and broad-based ad hoc committee that will Assistive technology; social justice organizations; Continued on page 4
PAGE 3 , TASN thrsimm, DEC. 2000/JAN. 2001 onairm E:EGITCD
Ram dm Ezezzative Dizectteir IF.Zacadgra: This year's accomplishments committee is planning a crackerbarrel on Continued from page 3 include publication of TASH's first confer- immigration issues for next year's confer- ence Yearbook and promoting and sponsor- ence. * Sexuality, friendships, supporting ing three strands at this year's conference. relationships; Goals include facilitating dialogue on 1Pantegag aril IFamarlEy CamraAttaz: This standardized testing and accountability and committee held a crackerbarrel at the "Where science, advocacy and values publishing a book of JASH reading related conference. Goals include publishing short meet" to inclusion. information sheets that explain research findings in plain language; organizing more * Inclusive education specific strategies IEc ri amyl Tma flidate: networking opportunities; and getting the for making it work for kids with more Goals include writing a response to the word out about TASH and opportunities to severe disabilities; Ticket to Work regulations focused on wayspresent at the TASH conference to more to include persons with significant disabili- family members. * Community organizing; how one person ties; helping membership understand the can make a difference; disability access to implications of the Ticket to Work Pon=gazil PAT:madam ClramIttor. the election process; acting locally in regulations, possibly through the Newslet- This committee was instrumental in the response to new political realities; chapter/ ter; continuing to build the importance of publication of a special JASH issue on local leadership; employment issues, possibly through a teacher education this year. Goals include keynote at next year's conference; building finalizing a resolution on teacher educa- Transitions across the lifespan; planning connections between employment-based tion; drafting a resolution on related and supporting milestones throughout one'schoice and the broader self-determination services personnel development; organiz- life. movement; and organizing a strand at next ing both a strand and TASH Tech for next year's conference. year's conference; setting up chat room Ccommafittlexe acegara.s:The following discussions; and developing relationships committees provided reports. Highlights &mill:me-4 Allgancsalices Gummi= with other teacher education organizations. are noted. Goals include a Newsletter article by or about the family that presented at this year's POSlighT RECDMI467 Last year Akre IIIl2Pa Awatutc3 Com-alideez: Goals conference plenary session; organizing a this committee developed a resource list include establishing a timeline for award TASH Tech at next year's conference; with contacts in each state and most related activities, providing information developing a TASH resolution on guardian- Canadian provinces who could assist in about who Alice Hayden was on the ship alternatives; publicizing the alterna- finding positive behavioral support website, listing past recipients on the tives to guardianship; supporting efforts of services. This year's goals include broad website, and providing criteria for the self-advocacy groups; and working with distribution of the resource list; continued award on the website. TASH chapters to sponsor regional work- work toward involving international shops on alternatives to guardianship. human rights organizations in the fight Cwadmalcoattierfa Issues Cmormidcace: against the use of aversive procedures; and This group held a roundtable at the Evattemnalormsall ism= Camograttae: Goals lobbying for Federal support to build the conference. They have revised two TASH include a campaign to ensure that the U.S. capacity of states to support individuals resolutions related to communication and signs the convention on the Rights of the with severe behavior problems. are working on developing a communica- Child by Sept. '01; TASH pursuing member- tion clearinghouse website. They are ship in Inclusion International; work on the Pu5glicadvas der. Goals for this interested in offering a conference strand special issue of JASH devoted to interna- committee this year include increasing the next year and developing a support and tional issues; and exploring the develop- circulation of JASH; making a recommen- information dissemination group for ment of an international chapter as well as dation for the next editor of JASH; and augmentative and alternative communica- linkages with the Canadian Association for formalizing a mentoring relationship tion (AAC) users. Community Living. between incoming and outgoing editors.
,Carm-dlititze: Goals Mullakrallamll Cammidez. Goals include 2.6entres3 kacrjraess ,Cermadee. This year include increasing the size and uses of the compiling information/directory of this committee organized a TASH Tech and community living list serve, focusing on materials that are available in different presented a strand. Goals for the coming economic equity, and working languages; assuring website links to year include linking a website on related collaboratively with other organizations bilingual, multicultural and refugee services to the TASH website, developing a that deal with economic issues and poverty organizations; seeking presentations on resolution on the preparation as well as other disability advocacy groups. research related to non-english speaking households of children with disabilities; and providing a clearinghouse for informa- tion listed by topic and language. This Continued on page 24 4C%2 PAGE 4 TASN lissom DEC. 2000/JAN. 2001 E=CEn11, conm 000000000000000000000000000000000000000000000000000000000000000 0 0 o O O 0 0 granddaughters, Francesca and Rebekah, Due Processes proceedings, attended , 0 ages 4 years and 9 months. Our youngest the workshops, been appointed to the 0 Introducing 0 TASH's New son, Stefan, lives with us in Virginia and has work groups and task forces, written the , 0 been working for the past nine years for the legislation and "sat in" the Rotunda of 0 Director of 0 0 Governmental federal government. the United States Congress. After four 0 years of working independently as a 0 0 Relations, 0 Jamie My sons were both diagnosed early in their consultant, I am happy to be working 0 0 lives. First Dan, with learning disabilities collaboratively in a membership 0 Ruppmann 0 and a seizure disorder, and then Stefan, with organization. I'm looking forward to 0 0 autism. Like many families, we struggled assisting TASH members in achieving 0 0 through the early "pre P.L. 94-142" days the public policy goals that will move begin my tenure as the Director of with no early intervention and no special us closer to the day when all citizens 0 0 Governmental Relations for TASH 0 0 education. The struggles of those years will be supported in achieving their 01with a great deal of enthusiasm and forged us into strong advocates for our self-determined dreams and hopes. 0pleasure to be working for and with an O 0 sons. We came to understand very well the 0organization that I have respected, need for -- and the limits ofpublic policy With the guidance of the Governmental 0admired and supported for many years. 0 and services. We formed alliances with Affairs Committee, chaired by Mike 0 other families. We fought to maintain our Auberger, and TASH Board liaisons, 0 0These introductory essays are difficult to 0 0 leadership as primary decision makers for Marcie Roth and Lu Zeph, we will be 0write. One always feel concerned about our family and were one of a handful of moving ahead in the priority areas of setting an "enough about me, what do parents at that time who were seeking MiCASSA, employment, education and 0YOU think of me?" tone that will come inclusion for our children with disabilities. international children's issues. Please 0 across as boasting. Yet, there is the need don't hesitate to contact me with to tell some details about my profes- My work as an advocate has ranged from questions or suggestions for updating 0 sional and personal life so TASH organizing grassroots activities at the local our web pages and publications. 0 members will have an idea of who I am and state level to coordinating federal and Members can reach me at the TASH 0 and why I am here. 0 state funded projects in Early Intervention, office at (410) 828-8274, ext. 104 or 0 Parent Education and Systems Change. I've by e-mail at [email protected] 0 o My husband, Heinz, and I have two adult 0 held the meetings, written (and bulk- 0 sons, Daniel and Stefan. Daniel is mailed!) the newsletters, driven the o married and lives in Pennsylvania just speakers, coordinated the conferences, outside of Philadelphia. We have two made the public testimony, testified in the 0 O,,0o0o0 0000000000000000000000000000000000000000000000000000000000Si0 Update on the Legislation Passed by Work Incentives Advisory Panel. The disabilities with more choice in employ- the 106th Congress advisory panel of the Social Security ment services, vocational rehabilitation Administration (SSA) is holding a series of services, and other kinds of support public meetings to obtain public input Despite the failure of the Congress to act on services to help them return to work. The across the country. The purpose of these behalf of MiCassa (Medicaid Community Ticket program will pay the new providers meetings and teleconferences is to collect of those services after a SSA beneficiary Attendant Services Act), several bills were ideas and reactions from all interested passed that are of continuing interest to achieves a certain level of work. parties on the TASH members. proposed regulations the Social Security For electronic information on the Ticket to Administration issued on December 28, Work and Work Incentives The Ticket-to-Work and Work 2000. These regulations spell out the Improvement Act see the
The Developmental Disabilities Update on the Legislation Passed by Assistance and Bill of Rights Act of the 106th Congress Additional legislation passed by the 2000 (S 1809, P.L. 106-4020 reautho- Continued from page 5 106th Congress includes: rizes programs that support individuals with developmental disabilities includ- The Children's Health Act of 2000 ing State Councils on Developmental (H.R. 4365, P.L. 106-310) creates a Disabilities, Protection and Advocacy National Center for Birth Defects and Systems, and University Centers for Clinton Administration Developmental Disabilities at the Excellence in Education, Research, and Centers for Disease Control to (1) Service. The law also provides funding Follows through on Promises collect, analyze, and make available data to help states improve services to Made to the Disability on birth defects; (2) operate centers for families and to develop a training Community the conduct of applied epidemiological program for direct support workers research on prevention of those defects; who assist individuals with develop- Before the change in administration in and (3) provide birth defect prevention mental disabilities and their families. Washington took place, the Departmentinformation and education to the public. of Health and Human Services an- The bill increases federal research and Because the definition of developmental nounced the release of $70 million in funding in a number of areas including disability (not to be confused with grants to states aimed at supporting thelead poisoning and conditions such as developmental delay) is generic based American with Disabilities Act (ADA). autism, traumatic brain injury, Tourette on degree of disability, some individuals The grants include $50 million in "Realsyndrome and neurofibromatosis. with learning disabilities may be Choice Systems Change Grants" that eligible for are designed to help states improve services. their health and long-term service delivery systems by expanding supports 0 , and opportunities for people with disabilities of all ages to live in their own homes and communities. Grant funding may be directed toward fs-rnsiiYearbook improvements in quality assurance . mechanisms, long-term service system reform and in demonstration projects. The yearbook is a compendium of Orderr - selected articles describing many of the Up to $15 million in grants and Section conference presentations. 8 housing vouchers are also to be made Form available to states to assist in the transition of people with disabilities of 1999 Conference Yearbook - $35.00 all ages from institutional to commu- I would like to order the 2000 Conference Yearbook at a nity-integrated housing. special pre-production discounted price of $25.00!
Finally, grants up to $8 million will be Total Amount Due $ Payment Method made available to support states in Check improving community-based personal Visa Mastercard Discover assistance services (PASS) designed to Card #: ensure maximum control on the part of Exp. Date people with disabilities.States may use the grants in the development and Signature implementation of the infrastructure Ship to: necessary to support long-term services Name that offer maximum consumer control. Address City/State/Zip or Postal Code The grant awards will be made to states Country E-mail Address by the end of September 2001. More a information on the grants can be found Clip this coupon and mail it to: TASH, Yearbook Order, 29 W. Susquehanna Avenue, on the HCFA web site at
PAGE 6 TAN NEMMER, DEC.. 20110/JAIL 2001 2 S 4 DECEMBER 2000 /JANUARY 2001
youstop job Path seeps a vvItenever job Developer/ VASossUlle. marketing Stspisort 1. Go to igive.com or greatergood.com on the web. Representative 2. Follow the simple instructions to register as a new member. Before shopping, Job Path, a nationally recognized make sure to identify TASH as training and employment program for the organization you wish to adults with developmental disabilities, support. places its participants in respected Shop online 3. Click on any of the banks, law firms, department stores hundreds of websites to shop and other corporations. The program as you normally would! seeks a marketing representative (job through developer) to develop job openings in the private sector. Up to 15% of your total pur- igive.com or chases will be donated to TASH. RESPONSIBILITIES: Other great deals available to greatergood.com you as a member of igive.com Develop jobs for program partici- and greatergood.com include pants; TODAY! Initiate new contacts by telephone; Present Job Path's program in a Discounts from select convincing manner to prospective We've made it convenient and stores employers; simple for you to shop online and Maintain contact with line supervi- support the work of TASH at the Free shipping offers sors to acquaint them with Job Path same time. Your purchases will and to answer questions; cost no more but TASH will benefit! A Prepare marketing reports; An entire online mall filled Participate in special projects with brand name mer- w.( By shopping through igive.com or chants ready to serve you! greatergood.com, two popular QUALIFICATIONS: online shopping services that represent hundreds of retailers such Bachelor's Degree plus previous sales as Amazon.com, Barnes & Noble, Shop at igive.com or experience, strong telemarketing/sales The Gap, Disney Store, Gift greatergood.com 24 hours a skills a must.Production oriented. Baskets.com, J. Crew, Nordstrom, day, 7 days a week! Re- Petsmart, J.C. Penney and scores member to go to igive.com of others, you can have the ease SALARY: and savings that come with shop- or greatergood.com first to $28k-30k depending upon experience. ping online, and the knowledge access your merchant of Excellent benefits. that up to15% of every purchase choice from these sites. you make will be donated to TASH! STARTING DATE: Immediately Need help? Questions? Best of all, it's FREE to shop via igive.com and greatergood.com! Call us at 1-800-482-8274, Send resume to: Your purchases will cost exactly ext. 106 or send an e- what they would have if you had Job Path gone directly to the merchant's mail to [email protected] 22 West 38 Street New York, New York 10018 web site. (212) 944 0564
HOW DO I SIGN UP? Supporting TASH is just a click away and as easy JOB PATH IS AN EQUAL OPPOR- It's as easy as 1, 2, 3! as shopping online! TUNITY EMPLOYER
TASN KammDEC. 2000 /JAN. 2001 PACE 7 285 2000 ANNUAL CONFERENCE
TASH organization of the workshops, conference Future Conference Sites Conference: program/book, and the overall quality of sessions. Many participants noticed the We asked participants to rank their "Moving the decrease in sessions and voiced their Edge" preferences for future conference satisfaction with the "more manageable locations in 2005 and 2006. The cities program." Some participants indicated that drew the most votes were Anchorage, that they were disappointed however, with Seattle, and Edmonton or Montreal TASH's 2000 the variety and balance of sessions; (Canada). The primary desire of Conference, "Moving specifically, they felt that the conference conference attendees is that future the Edge," was held at the had an over representation of education locations be affordable for all partici- Miami Beach Fontainebleau Hilton issues and too few sessions related to adults pants.Specifically, attendees are and Towers from December 7-9th. The living in the community (employment, requesting sites that offer more afford- total attendance was around 1500. Al- advocacy issues, for example). Please able hotel rates, airfare and meals. though attendance was down from the remember for this coming yearthe previous year's conference in Chicago, the content of the TASH Conference is built on We recognize that affordability is a major energy, enthusiasm, and excellent sessions proposals that are submitted. If you want concern for most attendees, and we will that are associated with the TASH Confer- to see an increase in the number of topics continue to do everything within our ence were not! Many long time members in a certain area, encourage people who are power to meet the needs of conference were not at the conference this year - and doing progressive, cutting-edge work in participants. we missed you! The conference is our time that area to submit a proposal. Each single to renew commitments, energy, and action presentation is one of the threads that plans of the organization. We hope that blends to make the fabric of the conference each member will make plans to submit a sturdy, vibrant, and rich. Make copies of the proposal to present at the 2001 Confer- proposal form on pages 18-20 of this ence! newsletter, and distribute it to folks who you see implementing the values of TASH Some of the highlights of the 2000 everyday. Italy conference "Moving the Edge," were the opening Participants were very pleased with the Seminar address by built-in lunch hour and requested the same Education in Italy: our newly format for both days of the conference. An Inclusive Approach elected board The roundtable luncheon was well received President, and there is support for having similar May 16-June 11, 2001 Donna Gilles functions in the future. The Saturday Syracuse University (see page 9), morning poster sessions and breakfast was keynote extremely successful. Over 75 posters Why study inclusive education in addresses by were presented, and attendees, speakers Italy? United Nations observers cite Pat Mirenda Italy's programs as the most inclusive Highlights from Thursday's and Oscar in the world. There are site visits to keynote address by Pat Arias (see schools in Rome, Florence, Bologna, Mirenda will be featured in the page 13), a Parma, and a rural village near Naples; next issue of the TASH guest lecturers from local, regional and Newsletter. video tribute to Marsha national levels. Forest, and the Time is planned for enriching cultural presentation of the 2000 TASH Awards Pay: experiences involving the history, art, (see page 11.) and architecture in Rome, Florence, rr Venice, Parma, Pompeii, and Orvieto. The tropical climate of Miami was a refreshing change and a source of enjoy- A variety of exciting poster sessions drew Write or call Dr. Carol Berrigan, ment for participants. The price of a resort, early morning attendees into the Exhibit Seminar Director, of Syracuse Univer- however, was not! The overall consensus Hall. sity for more program information at: was that the property was too expensive Center on Human Policy, Syracuse food was very costly and there were few University, 805 S. Crouse Avenue, and exhibitors were very pleased with the Syracuse, NY 13244-2280; Phone: (315) viable options within walking distance. format, the complimentary breakfast and 443-3851; E-mail: The majority of the evaluations reflected the on-site participation. [email protected] that attendees were satisfied with the Q0 PAGE 8 TASN Ihriams, DEC. 2000/JAN. 2001 2000 ANNUAL CONFERENCE
disabilities have the supports that they both agent of change. If you are not a TASH desire and require to live in their own member, consider joining. And whether Donna Gilles homes. In our vision, nursing homes and you are a member or not, make the Tan President, institutions are not an option, and people commitment to do one thing per day that 2000-2003 with disabilities and their families should will lead to the cessation of segregating be in control of the funding and the choices people with disabilities, even if only to that define their vision of community reflect on your own attitudes and biases living. that might create barriers to realizing the vision of the full inclusion of people with The 2000 TASH Annual Conference While inclusive education and inclusive disabilities every person, every day, was a celebration of the 25th work are becoming more of a reality every every place. anniversary of TASH and the 25th day, people with disabilities continue to be /AS anniversary of the IDEA and its predeces- forced to select congregate living arrange- sors. It is no coincidence that TASH was ments because of the lack of vision, ARE YOU A UNIVERSITY formed at the same time as the passage of creativity, and desire on the part of those the law that made education of all children who fund living options for people with PROFESSOR? and young adults with disabilities a realty. disabilities. The recent attacks on the ADA TASH has a Student Membership have been about this very issue of the rights Program! The founders of TASH are strong advocates of people with disabilities to live in the of people who had traditionally been community instead of institutions. Once The program was developed through denied access to education, work, and again, TASH members along with other discussions with professors who wanted to community living. TASH has grown since advocacy organizations have worked hard encourage professional identity through student membership in a strong advocacy then, in size, diversity, and in vision. At the to making living in one's own home a organization while assuring that their beginning, TASH supported the right and reality for many people with disabilities. the reality for children who have been students had access to enough issues of JASH for them to be able to complete a labeled with significant disabilities to be TASH has been described as the radical variety of journal article review and taught in their home schools with the same fringe; a group of people who do not know comparison exercises they assign. teachers and classrooms as their peers what we are talking about; an organization without disabilities. Our earliest TASH that is unrealistic. But look at where we The package works like this: members were instrumental in creating have come in 25 years. TASH members successful instructional technologies that have created the vision and developed Professors can either assign TASH membership as one would a text book or helped people with significant disabilities ways of making the vision a reality to the package of readings, or can offer it as an learn critical skills, demonstrating that point that TASH doesn't stand alone on indeed it was not only appropriate, but option. Either way, if ten or more students these issues anymore. TASH has truly join, they receive a discount off the already essential to educate all students. For a long been ahead of its time every step of the way. low associate member rate. The discount time, we stood alone in our support of Our values are reflected in our resolutions, amount increases as the number of people with disabilities being schooled in many of which are bold statements on students signing up increases. general education classrooms. TASH controversial issues, some of which are members were among the key developers opposed even by some of our members. Regardless of how many students join, of successful support strategies that today But we continue to "move the edge" and we TASH provides a year's worth of back issues of the journal to all students signing up define inclusive education. wouldn't be TASH if we weren't challenging under this plan. This means your students people to constantly think in different In becoming more responsive to the will start the semester with a year's worth of ways. cutting edge research on their shelf and can advocacy needs of our membership and as build their collection over the years to come. more people with disabilities become What's next? We have the vision, we know Under this plan, students receive all of the active members, TASH began to focus on how to make it work, we know how to regular membership benefits during the issues that affect adults with disabilities. financially support people with disabilities coming year in addition to an extra full TASH members advocated for people with becoming full participants in all aspects of year's worth of journals! significant disabilities working in real jobs their communities. In spite of our wealth An introduction to TASH is likely to be one with real pay and, along with supporters of knowledge and talent, there are hun- of the most valued resources you can offer from other organizations, were instrumen- dreds of thousands of people who are still tal in making competitive and supported students as they enter the disability segregated in educational, employment, community in their professional capacities. employment realities for many people with and residential settings. There are too To receive materials or to learn more about disabilities. many people who are still isolated from the TASH's Student Membership Program, very people who could be their friends and contact Rose Holsey, 410-828-8274, ext. 100 TASH currently is at the forefront of the their supports. It is time. TASH's strength or e-mail: [email protected] struggle to ensure that people with is in its membership and each of you is an
PAGE 8(.1 TASH &sum DEC. 2000 /JAN. 2001 ;.o mow far eve t0.4
AL al
knovin is p event ondinforrnrouoTiv_seg onnueldyeing of discussion VicCallaboratry' 1014'sorroy ond Plan Doak its for e4 Miami Beach, Florida December 6-9th Workshops
...designed to educate, inspire and...sometimes make you laugh! Saturdaymornings continental poster breakfast and presenters were bighits and attendees. with Recipients of the 2000 TASH Collaboration Award describe the Circle Way Project. Of course, there was time for lots of special events, too!
John Irvin's workshop on hilarity therapy was as entertaining as it was educational.
The Ft Lauderdale Jack Children's attendees with Theatreengaged Pearpoint a wonderful Thanks- to all-- who made donations and bid on performance (nght) and musical written of a items during TASH's first-ever Silent Auction! by Jeff Moyer Jan Nisbet The event was a smashing success, raising shared a almost $6,000 for the TASH Conference moving video Scholarship Fund. tribute to Marsha Forest
WonSailor (left) presented a
rimp, cfp ga-V special 74Slii. 4?-1) 1 ) otik=, I .5-4'*) Lifetime Provided 1,4714,47Y Bellon Achievement Award to entert --I the Central At the end of a long but productive day what 4hnl'ershci -thent Doug Guess. 0' Reception.at 'Vice could be better than cake -- 1"gYi' 2Sth especially one that marks TASH's Silver Anniversary!
PAGE 10 TASHNIFSIBTER,DEC. 2000/JAN. 2001 MOD ANNUAL 11'1.
2000 Thomas G. Haring Award for Re- 2000 Alice H. Hayden Award search Meada Gwen Hall Pamela J. Wolfberg, Craig Zercher, Joan Lieber, Karen Cape ll, Sonya Matias, Marci Hanson, Samuel TASH presents the Alice Hayden Award to a doctoral L. Odom student who demonstrates potential for leadership in teaching, scholarship, and service on behalf of This award is presented to the authors of a study of persons labeled with severe disabilities. Meada is a )( particular significance that was published in JASH doctoral student in the Department of Special within the two years prior to the annual conference. Education and Rehabilitation Counseling at the This years award goes to the authors of "Can I Play University of Kentucky. In addition to being a full- With You?" Peer Culture in Inclusive Preschool time student, she is director of a statewide project Programs, which appeared in JASH 199, Vol.24, that uses distance learning technologies to prepare No.2, 69-84. The article demonstrates scientific merit,teachers of students labeled with moderate and severe and has made an important contribution to the disabilities in rural Kentucky. In additional to being disability field in terms of sociocultural influnces, a promising teacher educator and scholar, Meada's implications for educational practice, and future professors characterize her as an exemplary and directions for research. innovative special education teacher, a strong advocate for students with disabilities and their families, and a force in the field of special education 2000 Collaboration Award whose drive is only likely to increase in the future. "Circle Way" Center for Community Support (Mary Romer, Sally Sehmsdorf and Leah Preston); Bridge Ministries 2000 Positive Approaches Award (Mary Galvin, Bruce Knofel); Washington PAVE (Lindy O'Keeffe, Michelle Lehosky, and Chris Bily, ); Robert Homer and George Sugai Parent to Parent (Robert Perretz-Rosales and Sarah Jolley) This award is presented for contributions which have served to advance non-aversive intervention with The Circle Way - Statement of Intent persons who display challenging behaviors; have demonstrated outstanding efforts leading to the 1Nhen I listen understanding of challenging behavior; and whose .A different reality becomes known to me, actions have advanced the use of non-aversive 'When I reflect on what I hear interventions and progress in the use of positive .1 am touched and changed behavioral supports. Dr. Sugai's and Dr. Homer's When I act on what I hear research focuses on designing, validating, and implementing positive behavior supports, which has INe become apart of each other. been successfully validated through data collection in various settings. Most notably, schools have INe who follow the circle way are committedrecorded tremendous success through more positive to honoring the harmony student behaviors, improved student-teacher interac- that comes from a peaceful mind; tions, and higher academic performances. an open heart, a true tongue, a light step, a forgiving nature, and a Cove of justice. 2000 Emma Rose Scholarship Through this award, TASH recognizes a collaborative team of people whose work and accomplishments Billy and Jean Smith serve as an inspiration for other community efforts, and demonstrate creativity in supporting an indi- Through the generosity of the Jacobs Family, TASH vidual or individuals to realize the goals of self- is able to award the Emma Rose Scholarship each empowerment and full community inclusion. Circle year. The purpose of the scholarship fund is to foster Way is an exemplary project which has made a long- the growth of parent advocacy and activism by term commitment to the question of how to generate honoring two parents each year who have made a a local capacity to assist people with disabilities and difference in the lives of people with disabilities. their families, working from their hearts to engage theThis year the award is presented to the Smiths for hearts of a growing network of people who are advocating for their daughter, Carol and for champi- forging a collective, collaborative future. oning the cause of equal opportunity for all.
PAGE 11 2 8 9 TASH hem% DEC..i11,111/JAN. 2000 ANNUAL CONFERENCE
to the following Official Sponsors for their support of the 2000 TASH Annual Conference! Anchorage Convention &Anchorage Convention Visitors Bureau & Visitors Bureau Silver Level Sponsor
William M. Mercer, WILLIAM M. Inc. MERCER Bronze Level to the 2000 TASH Sponsor City of Miami Beach/ Annual Conference Barrier-Free Environment Committee Bronze Level Sponsor Volunteers!
Paul H. Brookes BKOKES
Publishing Co. TM We couldn't have done it without Bronze Level Sponsor you!
To our Conference Jeff Moyer Music San Francisco Unified School District Kinetic Kids, Inc. The Guided Tour, Inc. Exhibitors, your support is Lifestyle Enhancement Services Trips Inc. invaluable! Measured Progress/ILSSA UNH/Institute on Disability Mental Health Resources Moving Solutions, Inc. Many thanks to all of the Annual Confer- National Institute for Urban School ence exhibitors that supported TASH's 2000 Improvement meeting. We greatly appreciate the loyalty National Professional Resources of those exhibitors that have been with us Networks for Training & Development, over the years, and hope that our newest Inc. exhibitors enjoyed the experience. NICHCY NISH We look forward to having you be a part of Nova Southeastern University the 2001 TASH annual event! Partnerships in Community Living Inc PEAK Parent Center, Inc. Able Net, Inc. Program Development Associates Anchorage Convention & Visitors Bureau APSE Assistive Technology, Inc. Aurora Ministries Barbara Moran Brookes Publishing Company Center for Technical Assistance & Training City of Miami Beach/Barrier-Free Environment Committee DynaVox Systems Inc. 4, a' Facilitated Communication Institute r6-----... Herb Lovett Memorial Fund Howard Community Services Inclusion Press International Rett Syndrome Association e PACE 12 4- TASN NE M= DEC. 2000 /MAN. 2001 KEYNOTE ADDRESS
The Links between advocacy for EXCERPTS must consist of three major thrusts: one, persons with disabilities work- to prevent these abuses from continuing ing for peace F OM 2000 to happen; two, to provide care and support for those who have fallen victim hen I was invited to speak at KEYNOTE to the brutality of war; and three, to hold this conference, I was told that accountable those who perpetrate human there was a strong connection ADDRESS: rights abuses under the political cover of between my message of demilitarization war. and human security and the work of this R. OSCAR ARIAS distinguished organization. After reviewing I am aware that TASH, as an organiza- TASH's Resolution on Peace and learning tion, has been particularly active on the more about the organization, 1 have to say second of these "battle fronts," that of that I completely agree. There is a natural supporting victims of armed conflicts fit between working for an end to armed and their families. As I am sure that conflicts in the world and struggling for the you know more about this aspect of rights of persons with disabilities. human rights work than 1, I shall not dwell here, except to encourage you to A significant part of the affinity between my keep up the good work.Instead, permit work and yours lies in the fact that war is me to elaborate on two international the direct cause of millions of preventable efforts with which I am more directly and unnecessary disabilities. Land mines linked, and which are fighting along are a case in point, killing and maiming lines one and three: preventing human people both during and long after wars, as rights abuses, and holding accountable "I applaud you for the sound principles and those responsible for committing them. there is no timing device to signal to a land values on which your organization is based, mine that a war is over. Fortunately, we and which are at the heart of your work: now have a treaty in place, and clean-up human dignity, social justice, peace, and In order to prevent human rights efforts are being undertaken around the compassion.I challenge you, then,as you abuses, or any type of gross violence, at world that will go a long way towards go about the tasks of dialogue, teaching, least two elements are necessary. I ridding the globe of this particular menace. and learning that have brought you to this believe that we must attend to both the The success of the campaign to ban land conference, to hold these values ever before culture and mentality of violence that mines was made possible by thousands of you. Turning values into action can present exists in the world, and to the continual individuals and groups, like those gathered difficulties for all of us. But the difficulties production and spread of deadly will not be nearly as great as trying to here, who value the dignity of human life weaponry. There has been much debate grope our way in the dark, without the in recent years about whether people over the mindless destruction caused by guiding lanterns that our values and armed conflicts around the world. principles provide." kill or weapons kill, but Itell you that this is a false dichotomy. Violent Another thread that binds us together is our :::::. people with access to weapons is the struggle for human rights. Many people, deadly combination that the world, up when they hear the phrase "human rights," services. While the former group of to now, has not had the courage or think of such rights as the freedom from rights continue to be disregarded in vision to adequately address. torture, and the freedom to express situations of conflict around the world, political views without fear of persecution. the latter group are, amazingly, still not The most extreme consequences of These, indeed, are among those rights listed guaranteed in the world's most prosperous weapons in the wrong hands can be in the United Nations Universal Declara- of democracies. seen in the numerous armed internal tion of Human Rights. They, and several conflicts and episodes of "ethnic others, pertain especially to individuals Let us first take a look at those human cleansing" and political repression that living in countries either at war or experi- rights pertaining to war or political have happened, and continue to happen, encing government repression or political repression. As I mentioned earlier, and throughout the world. Events in Rwanda, instability. This is one class of human as can be read in the TASH resolution on Kosovo, and East Timor, to name a few, rights. Another class are those human peace, disregard for human rights in timesprovide us with awful examples. And rights which can go abused even in times of war results in innumerable preventable what is perhaps the most troubling to of stable, democratic governance. These disabilities, both physical and mental. those of us who live in what we consider include, for example, the right to work, Political conflict is extremely complex, to be civilized democracies, is that it is and the rights to food, clothing, housing, and consequently the battle to defend democratic governments that are making and medical care and necessary social human rights in situations of conflict Continued on page 14
E 91 TASN Narsinns,DEC. J111111)/JAN 2000 CONFERENCE KEYNOTE ADDRESS
2000CONFERENCE KEYNOTE These measures seem so logical that it is geographical specificity and the fact that AddRESS: DR. OSCAR ARIAS difficult to conceive of the huge obstacles their work has been purely retrospective that stand in the way of their adoption by limit the effectiveness of such tribunals in Continued from page 13 the world's leading democracies. Dis- deterring human rights abuses. What is gracefully, the biggest such impediment is truly needed is an international and the formidable economic and political permanent body charged with the function the weapons of destruction easily available clout wielded by the arms industry of trying suspected war criminals and to those carrying out such violence. throughout the world. The situation is human rights abusers. Because of its Saddam Hussein sits atop a powerful daunting, and yet we have hope because permanent status, its existence alone would arsenal that was supplied by Western thousands of individuals, groups, and serve to deter would-be violators of human governments when Iraq was thought to be community leaders have expressed their rights who might otherwise be able to act the "safe bet" in its conflict with Iran. faith in the Code as both morally sound with impunity. Moreover, by ensuring that France provided much aid to the genocidal and politically necessary. It is these the perpetrators of heinous crimes are government of Rwanda. The military people, and the force of their convictions, brought to justice quickly, an International equipment used against pro-independence that turn possibility into progress, and Criminal Court would help conflict-torn groups in East Timor had been previously turn impractical ideas into reality. Victor nations on the road to reconciliation and supplied by Great Britain. And the list goes Hugo once said, "There is one thing recovery. on. stronger than all the armies in the world, and that is an idea whose time has come." A movement to establish just such a body While some human rights requirements do I submit to you that it is time for a new has been underway for several years now exist on international arms trade, they are ethic regarding weapons manufacture and The Coalition for an International Crimi- generally of a voluntary nature, and easily sale, and that if governments and arms nal Court (ICC) scored a major victory in overridden when a government perceives makers resist, in the end the people will Rome in 1998, when an overwhelming an economic or strategic reason to go convince them otherwise. majority of delegates at a diplomatic ahead with a sale to a government or group conference expressed their support for an with a poor human rights record. An ICC. Since then, 115 nations have signed example of this was President Clinton's the treaty and 22 have ratified it. Sixty Let us be very clear about the distinction ratifications will be necessary for the treaty approval of nearly one billion dollars in between national security and human military aid to Colombia, a country which security. National security was the old to take effect, and it is clear that the most has been submerged in civil war for more paradigm, the principle used to justify a elusive will be that of the United States, a than forty years. Although Colombia's hollow peace based on secure borders. country which has time and again shown its military does not currently meet human Human security is the newer thinking, resistance to submitting its citizens to the rights requirements written into U.S. law, which recognizes that secure lives rather authority of international bodies. I tell you the president simply waived those require- than secure borders produce real peace. that unless the U.S. is willing to join the rest ments and went ahead with the aid. Where national security demands of the international community in con- management of conflicts, human security demning war crimes and crimes against demands that we devote energy and humanity including those committed by It is clear that the interests that arms resources to meeting the real needs of manufacturers and first-world governments people rather than the imagined needs of its own soldiers it will be impeding pay heed to are not those of the individuals the military establishment. progress toward a world where swift justice likely to be harmed or killed by the is available for those who fall victim to the weapons they sell to undemocratic regimes. brutal consequences of war. Most of you Instead, they act based upon their own here are citizens of this great country, and I financial interests, or short-term political Let us turn now to an important effort that implore you to take whatever political alliances with groups considered to be "the is taking place internationally with regard actions are available to you to press your lesser of two evils" alliances which to the third "battle front," if you will; that government to support the establishment of backfire as often as not. It is for this reason of holding abusers of human rights an International Criminal Court. that I have been advocating, since 1997, an accountable for their crimes. For when we International Code of Conduct on Arms run up against the limits of prevention, and My friends, let us now turn to what I have Transfers. As of today, eighteen other Nobelabuses do happen, impunity for the authors termed the second type of human rights, peace laureates have signed onto the Code, of such acts is the worst type of salt rubbed those which rise to the forefront in times which calls for a ban on transfers of into the wounds of the victims and their of peace: the right to employment and a weapons or military technology to govern- families, and seriously hampers the healing decent standard of living, and the right to ments that violently repress fundamental process. The international community has necessary health and social services. I democratic rights, are guilty of gross recently taken steps in the right direction have called these "the human rights of violations of human rights, or that by establishing temporary tribunals to commit acts of armed international investigate and try war crimes in Rwanda aggression. and the Balkans. However, both their Continued on page 15
PAGE 142 TASN&numDEC. 2000 /JAN. 2001 MUSE KEYNOTE ADMIX
2000CONFERENCE KEYNOTE for sound policy today does anything but ment, and lack access to the most basic AddRESS: DR. OSCAR ARIAS take into account its effects on individuals. health and social services. The sad fact is Continued from page 14 that many countries spend more on their Let us be very clear about the distinction militaries than they do on health, and that between national security and human countries such as Pakistan, Myanmar, security. National security was the old Eritrea, and Burundi spend more on their paradigm, the principle used to justify a militaries than they do on health and hollow peace based on secure borders. education combined. And what is military Human security is the newer thinking, spending buying in these countries? which recognizes that secure lives rather Governments build up supplies of tanks If we are honest with ourselves, and if we have the wisdom to take a long-term than secure borders produce real peace. and weapons to defend people who are perspective, we will understand that Where national security legitimizes the use dying in the streets and in overcrowded there can be no peace without justice. of force for the protection of states' strategichospitals from hunger, malnutrition, and For peace means more than the silence of interests, the idea of human security preventable diseases. Instead of going to guns. Peace is a process, a way of life, a recognizes that poverty, hunger, and disease school and paving a path to a brighter way of solving problems and of resolving are forms of violence that have no justifica- future, children learn how to throw stones conflicts.It requires us to work and live tion. Where national security demands and shoot rifles, and age-old conflicts are together management of conflicts, human security tragically perpetuated in the youngest forces us to think more holistically about generation. the causes of conflict and instability. It peace time" in order to differentiate them demands that we devote energy and It is my strong belief that military spending from the human rights that are most often resources to meeting the real needs of represents the single most significant violated during wars. And yet, can we truly people rather than the imagined needs of perversion of worldwide priorities known say that there is peace when such basic the military establishment. And it makes today. To give a concrete example of this, rights are denied? us pose hard questions to the policy- let me make clear just how little of military makers and arms merchants who insist spending would have to be diverted to If we are honest with ourselves, and if we upon creating an ever more dangerous and reach universally desired human develop- have the wisdom to take a long-term potentially explosive world, at the expense ment goals. It is estimated that 780 billion perspective, we will understand that there of creating real opportunities for the poor dollars was spent on military technology can be no peace without justice. For peace and marginalized to live lives of dignity. and training worldwide in 1999'. Accord- means more than the silence of guns. Peace Human security goes far beyond a concern ing to the UN Human Development is a process, a way of life, a way of solving with weapons and fortificationsit is a Program, just five percent of that amount problems and of resolving conflicts. It concern with human life and well-being. would be sufficient to guarantee basic requires us to work and live together. And, education, health care and nutrition, I promise you, where there is an absence of There is an urgent need for human security potable water, and sanitation to all of the effort to achieve a true peace based on thinking to be adopted by today's world world's people. And yet, instead of invest- justice, the guns will not remain silent leaders. Nearly a billion people in the ing in the health and education of their forever. The frustration of the marginalized world are illiterate, and 1.3 billion live on people, poor countries continue to buy people of the world regularly explodes into an income of less than one dollar per day. weapons, and rich countries continue to violence, reminding us that until justice is More than a quarter of the people in the supply them, all in the name of "national guaranteed for all individuals and groups, developing world have no access to safe security" Ask any child on the streets of our world will not be able to enjoy the water, and more than half have no access to India, Burundi, or Myanmar whether she peace that we all long for. sanitation. When we are faced with these would rather have bread to eat and a school truths, how can we continue to spend to go to or a fighterjet to protect her, and In order to achieve a lasting peace with outrageous amounts of money on fighter you will have the obvious answer that justice, and to guarantee this second group planes and tanks, or even more nonsensi- national security means nothing in the of human rights, what our world's govern- cal, on the continued development of absence of human security. ments and peoples will need is to undergo anuclear missile systems? shift of perspective. The change required is to move from the concept of "national And yet we do. In relatively well-off security" to the concept of "human democracies as well as in many poor security" which puts individual human countries, military spending is out of beings at the center of policy decisions. proportion with spending on people's basic ISIPRI Yearbook 2000: Armaments, Disarmament Again, this is something which seems needs. This is the surest hallmark of a and International Security.Oxford UP: Oxford, 2000. logical and obvious that policy is useless government that continues to cling to the if it does not respond to the needs of real national security model, while its people go people and yet so much of what passes hungry, suffer the humiliation of unemploy- Continued on page 16 MOE 152 9 3 TANI NErsimm, DEC. 211110/JAN. 2001 2000 COIffERENCE KEYNOTE ADDRESS
2000 CONFERENCE KEYNOTE capable of shaking the foundations and million centers of energy and daring, those AddRESS: DR. OSCAR ARIAS waking up a society that has been sleeping. ripples build a current which can sweep down Continued from page 15 I commend you for your work in raising thethe walls of oppression and injustice." visibility of both the accomplishments and the unique needs and rights of persons with As you go about working to put the values disabilities, and for making a public call for of human dignity, social justice, peace and To give an example of what is possible the respect of the worth of each individual, compassion into practice, and calling upon when human security takes priority over regardless of race, creed, national origin, society to live up to these same ideals, I am military spending, let me tell you about my gender, sexual orientation, or disability. I confident that you will continue to make a country Costa Rica. In Costa Rica there is also applaud you for the sound principles world of difference in the lives of individu- no standing army. This provision was and values on which your organization is als and families around the globe. You, as written into our constitution in 1949. based, and which are at the heart of its an organization, have been doing so for During the half-century since then, Costa work: human dignity, social justice, peace, twenty-five years. And I am convinced, my Rica has consistently been characterized as and compassion. As you all well know, friends, on the dawn of a new century and the most stable democracy in Latin these values are not specific to the commu- new millennium, that the best is yet to America. With this sort of political calm, nity of persons with disability. They are, come. Costa Rica's leaders have been free to focus rather, values which are universal to the on the welfare of the country's people. As a human community, and which should result of having only minimal security underlie all of our efforts at building ever- spending in the form of funds for police, better societies which are respectful of all the Costa Rican government is able to aspects of the amazing diversity of human- dedicate almost a quarter of its national kind. budget to education, and the adult literacy rate exceeds 95 percent. Moreover, the I challenge you, then, as you go about the quality of health care in Costa Rica is very tasks of dialogue, teaching, and learning high, and Costa Rican life expectancies are that have brought you to this conference, to comparable to those in the United States hold these values ever before you. Keep and Europe. It was the virtual elimination them in mind as you discuss education, of military spending that made this family, and community. Mull them over Kentucky progress possible. At the same time, we during sessions on employment, health have found that not having an army has not, care, and discrimination. Any organiza- TASH as some might fear, left us more susceptible tional theorist will tell you that an organi- to attack or encroaching violence from zation is most effective when it is respond- is sponsoring a full-day neighboring countries. By abolishing our ing directly to its mission and core values. conference armed forces, we gained a moral force And, more importantly, any spiritual leader which has become our best defense. will tell you that a person that has achieved "Equal Justice inner peace is a person who has defined his My friends, the initiatives which I have or her values and is attempting to live by for All" outlined here are just some of the possible these on a daily basis. Turning values into March 30, 2001 ways to work for peace and justice in the action can present difficulties for all of us. Sheperdsville, Kentucky world. There are so many different levels But the difficulties will not be nearly as on which to have an impact in this struggle, great as trying to grope our way in the dark, Highlights include a from political action, to community without the guiding lanterns that our values morning session with participation, to simply being the best and principles provide. Bob Perske individuals we can be. As members of an and afternoon breakout organization that advocates for persons And if your courage ever fails you, or if you sessions. with disabilities, you understand the fall victim to the belief that the actions of importance of collective action on behalf one person are insignificant, remember For more information, of those whose voice might otherwise go these words of Robert E Kennedy: please call 502-459-5292. unheard. You also understand the capacity and responsibility of each individual to act. "It is from the numberless diverse acts of There is no question that individuals are courage and belief that human history is capable of achievements that have a lasting shaped. Each time a man stands up for an impact on their surroundings, and even on ideal, or acts to improve the lot of others, or their country or the world, and that this strikes out against injustice, he sends a tiny impact can be multiplied by grassroots ripple of hope, and crossing each other from a organizations like this one, which are
PAGE 16 TASN NEWSLI1114 DEC. 2000/JAN. 2001 DECEMBER 2000/JANUARY
Lane IKali ©Life Lines Par educator ServicDistrict Trainer- f-Trainers in Eugene, Oregon invites applications for the Whj? Activity-based, NIT "sit-get- following position: split & forget" staff development, small groups (less than 30!), Teacher, Life Skills Education Program individualized with networking opportunities *Illinois CEUs available! Qualifications: 1. Qualify for Oregon Handicapped Learner Li- What? 6 training modules, 3-day cense or a Severely Handicapped Learner's License trainer-of-trainers delivered by 2. Teaching experience with MSMR students is authors of ©LifeLines, the most preferred. comprehensive paraeducator curriculum available Lane ESD is located in Eugene, Oregon, a city of 125,000 situated at the southern end of the Willamette Valley about 100 miles south of Port- Now? Visit website or call to land.Lane County's 4,500 square miles extends register for Orlando, San Francisco, from the Pacific Coast to the Cascade Mountains. From Eugene, coastal beaches are one hour away Chicago, Houston or hosting your to the west and snow skiing is one and one half own training in your district hours to the east. Eugene and its surroundings provide an ideal living environment, rated one of the best in the United States.Outdoor and cultural activities abound. Eugene is home to the University of Oregon and Lane Community College. Education Visit our wetk site or call toy learn more is a high priority for the citizens of Lane County. = about our trainer-of-trainers work- For more information or an application call Carol shops; ordering materials; and hostin Knobbe at (541) 461-8264 or Brenda Jones at a TOT in your distric (541) 461-8202. A position posting is available at our web site wwwlane.k12.or.us.An official Lane www.irconsulting.com Education Service District application form must PMB 747 POB 6049 Katy, TX 77491-604 be submitted in order to be considered for this PH: 281-395-4978 position. onsuttingFax: 281-392-8379 4 95 PAGE 17 TAGN iii, DEC. 2 /JAIL TASH Announces a Change in Location for 2001 TASH Conference The 2001 conference was scheduled to be at the Anaheim Hilton in California in early December. We will be moving the location and dates, however the exact location is not con- firmed at this time. Every effort is being made to keep the conference in Southern California, or the West Coast, and to hold the conference in November or early December.
We have held a contract with the Hilton tional have pledged to continue to attitudes, systems, and empowered Anaheim property for several years. At the investigate the issue in hopes that an people to realize the full inclusion of time of contracting, and in the contract acceptable solution will be found. In the people with disabilities are of particular itself, the hotel states that they are in full meantime, they have agreed to release us interest. compliance with the ADA. In August of from the contract without requesting 2000, TASH staff Denise Marshall made a adherence to the significant financial We are looking for sessions that are site visit to the property and found that in penalty for cancellation. presented by teams of folks (individuals fact the property, in our estimation, is not with disabilities, family members, in compliance. The main issue of TASH has a long-standing relationship advocates, and professionals). We are contention is the fact that the hotel does with Hilton International, and we appreci- hoping that sessions will be geared to not have any roll-in showers. At that time, ate the sensitivity and seriousness with everyone, and use techniques that we stated to the hotel that per the ADA, 16 which they dealt with this issue. If you engage the audience, either through rooms with roll-in showers needed to be have ever attended a TASH Conference, discussion, activities, or other formats complete. We further told them that we you know that we take over entire hotels, such as skits, singing, or drama. The wanted them in place before we held the occupying over 800 rooms on peak conference committee is making a TASH Conference. The hotel informed us attendance nights, utilizing general request this year for presentations that that they were issued a court document session rooms for 2400 people and over are delivered in Spanish. which waived the requirement, as the 26 breakouts at a time. The task of finding hotel was built prior to the ADA and an alternate location with availability in Help ensure that the conference is according to their engineer, the concrete this short of a time period is not a simple filled with a rich variety of cutting-edge slabs upon which the bathrooms are built one. We are working feverishly, and sessions by sharing copies of the call are too thin to accommodate roll-in expect an decision soon. Certainly the in this issue of theNewsletter,or call showers. This process also revealed that location will be established well before us at 410-828-8274, ext 109 to request the original lawsuit, was brought against the March 31st deadline for submission. an updated one. the hotel by a TASH member, and is currently under appeal. All that notwithstanding, the call for presentations is out! The guidelines to Check the web at www.tash.org for updates on In support of enforcing compliance with submit an application to present follow on location and dates. You can also call Denise at the ADA and of our member who filed the the next two pages. 1-800-482-8274 (or 410-828-8274) extension suit, the TASH Board and Conference 103, e-mail to [email protected]; Kelly Nelson Committee unanimously agreed that The TASH 2001 Conference Committee at extension 105 or e-mail to [email protected]; unless the hotel submitted a plan for has identified interest in presentations that or look for further updates in the February installing the showers, TASH would not address the theme "Imaging the Future." TASHNewsletter financially support this property and would Proposals may be submitted on topics move the conference to another location. that demonstrate innovation, collabora- The Anaheim Hilton and Hilton Interna- tion, energy and daring. Stories and strategies that 4v2 changed images, LI Ca 10forresentations 2001 T Conference
Guidelines for Submission
The TASH Conference has many events and sessions. Main features of the conference are the poster and breakout sessions. The poster session is a grand event! Over 100 posters are presented during breakfast with 2000 partici- pants in attendance. In addition, there are over 350 cutting edge breakout sessions on a broad range of topics. All sessions are selected from proposals submitted to the Central Office of TASH. Proposals must be postmarked by March 31st. Each proposal is then sent to a review committee, whose members select the proposals that will be presented at this year's conference. 1) If accepted to present, All presenters are required to pay conference registration fees. TASH relies solely on membership and conference registration to be an effective organization. We strongly encourage presenters to be TASH members. International TASH members, self-advocates, parents, and family members are eligible to register at a reduced rate.
2) TASH encourages presentations that are made through partnerships or that demonstrate collaboration.
3) Please complete all sections of the application. A description or abstract of the proposed session must be sent along with the completed application, postmarked by March 31, 2001. Abstracts 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 formati.e. skill-building, program discussion, panel, etc.
4) Proposal content must reflect the values and resolutions of TASH. TASH is dedicated to disseminating infor- mation that reflects both the ideals and the pragmatic realities of pursuing the goals of equity, social justice, diver- sity, and full school, community, and work inclusion 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 that are inclusive and community-based. Presenters need to ensure that materials for the session are accessible to a broad range of ability levels, and are made available in alternative format, such as computer text files or large print.
5) 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 in- cluded. The form is available to download from TASH's web page: www.tash.org. You must, however, print and mail the form as per the guidelines. Please DO NOT email your proposal, as we cannot assure receipt or legibility of electronic transmissions.
6) In requesting the session format, please keep in mind that 1 hour and 2 1/4 hour presentation slots are limited. Poster sessions are "exhibits" that allow personalized opportunity for discussion. These sessions are highly interactive and valuable.
7) Once received, abstracts are forwarded to three reviewers for scoring. Proposals are rated on the following criteria: 1) relevance to TASH mission, 2) interest to TASH members, 3) extent to which information is state-of- the-art or cutting-edge, 4) the practicality of content, and 5) the clarity of the proposal.Scores are then tallied and ranked.
8) At times letters of acceptance get lost, or go to an incorrect address.Letters indicating if proposals have been accepted are sent at the end of June. Do not assume that your proposal has not been accepted if you 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 the session was accepted or not accepted.It is the responsibility of the session coordinator to notify co-presenters of acceptance. The 2001 TASH Call for Presentations is available in alternate format upon request. 297 Call for Presentations 2001 TSH Conference
2001 TASH Conference Presentation Application Date Received: Please complete all sections of this form. Submit 3 copies of the form and 3 copies of the required attachments listed below. Mail by March 31, 2001 to: Session Code: Kelly Nelson, TASH, 29 West Susquehanna Avenue, Suite 210, Baltimore, MD 21204 Questions? Phone: 1-800-482-8274 x105 or 410-828-8274 x 105 Sorry, faxed or e-mailed copies cannot be accepted.
COORDINATOR (You may only submit as a session coordinatorononeproposal) :
ORGANIZATION :
ADDRESS: CITY:
STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:
DAYTIME PHONE: HOME PHONE:
FAX: E-MAIL:
The above address is: HOME WORK OTHER
Session InformationPlease attach the following information: Session Title A short (40 word) description of your session that will be used in the conferenceprogram. Participants will select which session to attend based on this description, so write it with care! A one page abstract that describes the session. e A list of all co-presenters, including name, address, phone, fax, and e-mail for each person. Requested Session Type: (Please check only one)
Breakout Session I understand that it is my responsibility to CIDebate contact co-presenters regarding their participation El Performance in this session and to inform them of the Crackerbarrel or Discussion requirements listed on the guidelines for submission Strategic Gathering or Planning Session Art Display (including payment of conference registration fees) Poster Session if accepted.
Session Length (not applicable for posters or art displays): Signature (required): 1 HOUR SESSION 2 HOUR & 15 MINUTE SESSION TASH TECH Workshop (will be held from 1:00- 6:00 PM)
Applicable Interest Area(This category determines which committee reviews your proposal. Please pick only one) ADVOCACY FAMILY SPIRITUALITY AGING 171 GUARDIANSHIP SEXUALITY! SEXUAL EXPRESSION ASSISTIVE TECHNOLOGY ALTERNATIVES STUDENTS WHO CHALLENGE CREATIVE/PERFORMING ARTS GOVERNMENTAL AFFAIRS SCHOOLS BUT WHO DO NOT HAVE COMMUNICATION LEISURE AND RECREATION "SEVERE" DISABILITIES COMMUNITY LIVING/HOUSING MANAGEMENT ISSUES TRANSITION CRIMINAL JUSTICE MULTICULTURAL INCLUSIVE EDUCATION PARAPROFESSIONAL URBAN EDUCATION Other related interest areas to which this PERSONNEL PREPARATION sessionwould apply: HIGH SCHOOL INCLUSION POSITIVE APPROACHES INTERNATIONAL INCLUSION RELATED SERVICES STATEWIDE ALTERNATE ASSESSMENT RESEARCH EARLY CHILDHOOD SELF-DETERMINATION EMPLOYMENT O SPECIAIT,HEALTH CARE ETHICS/RIGHTS NEEDS 498 DECEMBER 2000/ 19 Rif 2001
iiiS nes go Bali pMefige tine gen0FORIS SEP of 01111° newesg Well 4 e me hers
Jacqueline Fanner Kearns Nicholasville, Kentucky Victoria McMullen University City, Missouri !Lisa O'Brien - Huntington Beach, California Kathy O'Connell Syracuse, New York GRADUATE PROGRAMS IN Kathryn B. Peckha -Hardin Camarillo, California SPECIAL EDUCATION Br. Cathy L Pratt Bloomington, Indiana Patti Scott Franklin Park, New Jersey VANDERBILT Philip II. Smith Montpelier, Vermont UNIVERSITY- Mark Wurzhacher Takoma Park, Maryland PEABODY COLLEGE
Lifetime membership entitles you to full international and chapter This department is nationally ranked as one of the leading programs in member benefits for your lifetime. The cost can be remitted over special education. The faculty are several monthly payments. engaged in innovative research and development projects and support a If you are interested in becoming a lifetime member of TASH, rigorous, research oriented doctoral contact Rose Holsey at 410-828-8274, ext. 100. program. Master's degree programs include: Early Childhood Special Education, Behavior Disorders, Learning Disabilities, Severe Disabili- ties, Secondary Transition, and Visual Disabilities. Doctoral program Ewan rin.' .orizons: emphases include Behavioral Disorders and Transition, Learning Disabilities, Partnerships for Quality Outcomes Early Childhood Special Education, Visual Disabilities, and Severe Disabili- 7-raining Conference ties. Generous financial support packages are available. MARCH 8-9, 2001 DOUBLETREE HOTEL, PENTAGON CITY Applications are accepted on a continuous basis. For more informa- ARLINGTON, VIRGINIA tion, visit the Web site at wwwpeabodyvanderbflt.edu or contact Self- determination Registration info: Lynda Wyatt, (lynda.wyatt@vanderbilt. edu), Individual Outcomes (202) 274-3416 [email protected] Department of Special Education, "Ticket to "Work" Box 328, Peabody College of Vanderbilt University, Nashville, TN -Workforce Investment Act 37203; (615) 322-8195. Keynote Speaker: Mr. Robert Gettings, Vanderbilt University has a strong Executive Director of the National Association of State commitment to diversity and actively Directors of Developmental Disabilities Services seeks applications from minorities and individuals with disabilities. Sponsored by: St. John's Community Services & University of Maryland CRP/RRCEP 299 Pati 21 ihrsuniz DEC. d1111j FENFLURAMINE ALERT
Children and Adults With Autism Could be at Risk from Medication
An alert was issued recently calling attention to the fact that thousands of people with th. autism were treated with fenfluramine, a drug now suspected of causing serious heart problems. The drug has not been used frequently for autism since the 1990s, and many people with autism who took this drug, their families, and their current health care providers, remain unaware that they should consult their physicians about possible risks.
Fenfluramine and dexfenfluramine were also marketed as weight reduction drugs until they were withdrawn from the market in 1997 in the face of mounting evidence that they could cause serious, potentially fatal heart problems. Since that time, a class action suit in the United States was settled for $3.75 billion and individual court awards to former users of these drugs have also been awarded millions of dollars. A similar class action suit appears to be close to settlement in Canada.
In September 1997, Health Canada and the U.S. Federal Drug Administration (FDA) announced that fenfluramine and dexfenfluramine (a particular form of fenfluramine) were being withdrawn from the market. The manufacturer withdrew the drugs voluntarily at the request of the FDA. At the time of the withdrawal of the drugs, Health Canada and the FDA urged the public to stop taking the drug and recommended that anyone exposed to the drug consult a physician about possible damage to their heart.
While attention has been given to the weight loss effects of fenfluramine, little attention has been given to thousands of children with autism and other developmental disabilities who were given the same drugs. Many of these individuals and their caregivers remain unaware that they, too, are at risk for damage to their hearts. While the problems associated with fenfluramine often remain undetected, detecting them before acute problems occur can reduce risks and improve outcomes. These problems may be even harder to detect in people with autism and developmental disabilities who often have limited communication. According to Raffath Sayeed, a physician in private practice with a particular interest in the care of patients with developmental disabilities, it is important that all individuals who took fenfluramine consult their health care providers.
In 1982, the New England Journal of Medicine printed case reports suggesting fenfluramine might be a powerful tool in treating autism. Some reports suggested that it doubled the IQ of children with autism, improved their ability to focus, and eliminated disruptive behavior. By the late 1980s, controlled studies showed that the benefits, if any, were much more modest and limited to a few individuals. In addition, more unpleasant side effects had been noted. Some physicians continued to prescribe fenfluramine to children and adults with autism well into the 1990s.
People with autism or a history of childhood autism, their families, and health care providers should work together to determine if they were treated with fenfluramine. People who were treated with this drug should consult their current health care providers to determine whether they should have tests of the heart valve function. This may involve an echocardiagram, a noninvasive test, similar to an ultrasound.
For more information please contact Dick Sobsey, Director, JP Das Developmental Disabilities Centre, at 780-492-3755; or Raffath Sayeed, MD, Family Medical Clinic, Lloydminister, Alberta, Canada at 306- 825- 8877.
PACE 2 TASNIhWEEMB,DEC. 2000/JAN. 2001 IN MEMORIAM: WADDIE WELCOME
"Anyone in a nursing home who prefers to Waddie Welcome and his Circle of live with a family can now do that because Friends were the recipients of the 1998 of him," Johnson said. TASH Collaboration Award. It is with deep sadness that we report Mr. Welcome found a way to live a real life. He Welcome's passing on January 15, 2001. found a way home. Welcome, a native of The following article is reprinted from Sylvania, lived much of his life in the Savannah Morning News. Cuyler-Brownsville neighborhood in I Savannah. One of five boys, Welcome was never able to attend school because of his Waddie Welcome got his wish to disabilities. live where he could "smell food Waddie Welcome on a stove and could hear Welcome was named one of Chatham 1914-2001 children playing." County's 10 most influential people of the decade in December 1999. He was a Waddie Welcome didn't like nursing founding a member of the St. James homes. Cold, sterile conditions, strangers "We learned to pick up certain gestures," Storytellers Group and a member of the as caretakers and distance from friends and said Savannah attorney Lester Johnson. "It Circle of Friends. He spent roughly the last family seemed to harm the Savannah man was always, 'I want to get out.' " "When we 15 years influencing public policy to be more than the cerebral palsy he had since finally did it, it was a great feeling because more personal and less institutional. birth. After all, Welcome had spent his he was so happy." Welcome got himself first 70 years or so supported by his back home, with various families, close to Welcome and his supporters were the parents, Henry and Carrie, then his brother, his favorite fried chicken and sweets of his subject of a documentary film, "Waddie Willie. No day-care programs. No respite longtime friend, Addie Reeves, 99. Welcome: A Man Who Can Not Be care. No institutions. Denied," produced by the University of "I took care of him as my child," Reeves Georgia. The film has won top honors at Just family, residents in and near his Cuyler- said. "He came to church every Sunday. He three video and film festivals nationwide. Brownsville neighborhood and members of came in smiling." With institutional life TASH honored Welcome and several his church, Connor's Temple Baptist, behind him, Welcome thrived in the four friends with its 1998 Collaboration Award pitching in to help a man whose limbs and or five Savannah homes he lived in in Seattle. mouth didn't work like for the past decade or so. He became most. perhaps the oldest person nationwide with cerebral palsy until he died earlier this f#14 But parents die and siblings sometimes month of liver cancer. Welcome was 86 can't provide living conditions approved by and still at home. well-intentioned neighbors. Officials were How does the latest notified and placed Welcome in the first of A lover of women and socializing, Wel- rulemaking and legislation series of health care facilities, where he come used a wheelchair to attend celebra- coming out of Capitol Hill spent the next 10 years. But Welcome tions around town, including the 1997 affect you and your fam- longed to live in a home. His wish moti- premiere of an award-winning documen- ily? How can you join vated a group of community members. tary, "Waddie Welcome: A Man Who Could with others to make a Thanks to their work over the years, Not Be Denied." The "sensual, gritty government assistance that once funded optimist" knew how to motivate people of difference and ensure that Welcome's nursing home stay was used to diverse colors and classes, Kohler said. your voice is heard? pay for him to live in regular homes with regular folks. "The thing that people are surprised at is the depth and breadth of the people who Join the TA511 care about him," Kohler said. What "What he wanted was to live with a family Governmental where he could smell food on a stove and people find more shocking it that a could hear children playing," said Tom charismatic senior citizen with disabili- Affairs List5erve Kohler, coordinator of Chatham-Savannah ties opened the door for others to live in Tocia& Citizen Advocacy, Inc. and a Welcome families, not institutions. supporter.Although unable to talk well, Welcome made his point to nursing home To sign up, go toTA5115 site visitors that he didn't like it there. at kty://www.egroups.com/ subscribe/FA5LICovAffairs 301 PACE 23 1 CHNfirsimm,DEC. 20110/A111. 2001 DECEMBER 2000 /JANUARY 2001
University of Maryland College of Education Department of Special Education
The Department of Special Education Simple Assistive Technology Solutions for classrooms like yours at the University of Maryland, College Park, is currently recruiting students in need of certification and those who would like to pursue a masters de- gree in special education with an emphasis in severe disabilities. We From the Executive Director Continued from page 4 are offering full tuition remission as well as book reimbursement to all full of related services personnel, and exploring a special issue of and part-time students. JASH.
Special Health Care Needs Committee: Goals include In addition, we are also seeking quali- coordinating a strand for next year's conference, and dis- seminating information of different program models, fied applicants in search of part-time different sources of support and funding, and various assistantships; living stipends and decision making models for determining support needs. benefits are available on a competi- Plan for new resolutions: Several new resolutions had been tive basis. proposed and are being worked on by committees. A small group of TASH members will be sought to review/revise a resolution that was sent to us on Electro Convulsive Therapy Members of underrepresented groups (ECT) and make a recommendation to the Board on this are encouraged to apply. resolution. A number of other topics have been suggested on which to develop resolutions. The Board will review this list over the next few months and select those they view as Please contact Dr. Frances Kohl, priorities to work on over this year. Project Director, Low Incidence Per-
Are you interested in participating in any of this work? Do you sonnel Preparation Grant at (301) have ideas, suggestions or concerns? We and the committees 405-6490 or via e-mail at welcome your involvement. Please contact me by phone at 410- [email protected] 828 -8274, ext. 101 or e-mail: [email protected] to discuss your suggestions or to contact the chairs of any of these committees.
n 9PAGE 24 TASN ammo, DEC. 2000 /JAN. 2001 MED ECEEU NEMER, FEL EC. The Herb Lovett Memorial Fun Inc. Third Annual Taking the Leap Saturday March 2q-5undaYMarch 25, 2001
American Visionary Art Museum 800 Key Highway Baltimore, Maryland 21230 Phone 410-244-1900
"I have generally been interested in writing about what I am learning, and inviting others to comment and help along the way, rather than articulate some truth as if I had discovered it." Herb Lovett, from edited PDD book outline If you live with.. you learn to... hostility fight criticism condemn Please join us as we use Herb's outline to facili- ridicule be shy tate a conversation on our experiences around shame be guilty the issues of developmental differences. tolerance be patient encouragement be confident 5peaKers: praise appreciate Anne Donnellan Doug BIKIen fairness be just Brett LeimKuhler"Roger BanKs security trust approval like yourself Judith Snow Rob Cutler
"Vision is the artof seeing things invisible. Agenda: Jonathan Swift Saturday 12:00 noon Registration "Art is at its bestwhen it forgets its very name." Dubuffet 1:00 p.m. Tour of Museum 2:00 P.M. Keynote "I hope that we have come to a point in our history 3:00-6:00 P.M. Panel Discussion where we have started to recognize that: the end 6:00-8:00 P.M. Reception with Rabbit Award point of pure thought is probably death; that we are not going to think our way out of these prob- Sunday lems; and that we require a new respect for the 10:00 a.m. -12 noon Concurrent Sessions irrational, the intuitive and the felt. We are discov- 12:00 noon Lunch ering that we need people who step out of the mold 1:00 p.m.3:00 p.m. Concurrent Sessions of what we created... to remind us who we are and who we need to be for one another:" Herb Lovett
Registration First Name: Last Name:
Individual $150.00 Organization: Person with a disability $ 75.00 Personal Assistant $ 75.00 Street Address Student $100.00 City: State: Zip: Make Checks payable to: Herb Lovett Memorial Fund, Inc. Country: Work Phone: Mail to: 76 G Street Home Phone: Fax: South Boston, MA 02127 Questions? call E-mail: 617-269-8382 fax 617- 268 -8908 3° 3 e-mail: [email protected]
PAGE 25 TASN &Yuma,DEC. 2000/JAN. 2001 ASH CALL FOR NOMINATIONS
TASH Executive Board and ThePublications Committee are beginning the search for the new Editor of JASH. The Editor serves a three- year term that will begin officially in October, 2001.
Nominations or direct applications are invited from TASH members CALL FOR with the experience and expertise described below. Applications from NOMINATIONS: traditionally under-represented groups including people with disabili- ties, women, and people representing Editor of JASH racial or ethnic minority groups are particularly encouraged. The follow- ing criteria will be used in making the selection decision:
1) Previous editorial experience as an Editor or Associate Editor of a scholarly journal in the field. 2) Previous authorship experience: publication in JASH within the past twoyears and /or substantial publication record in JASH and other journals. 3) Commitment to TASH resolutions and ideals. 4) Record of leadership in the area of severe disability, both within and outside of TASH. 5) Openness: willingness to consider new directions and innovative practices in the context of maintaining the Journal's commitment to excellence and scholarship. 6) Research skills: expertise in one or more research method commonly used in thearea of severe disability, for example: within-subject designs, qualitative methods, and/or large-N descriptive, experimental methods. 7) General organizational skills: evidence of ability to meet important deadlines and organize major tasks.
If you are interested in being considered for this position or to make a nomination, please send a brief letter of nomination/application by April 1st, 2001, to Nancy Weiss, Executive Director, TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21212. Youmay also e-mail your nomination or notice of your interest to: [email protected] applica- tion materials will be requested from finalists.
To receive a description of the process used in making the selection decision, please contact Nancy Weiss, nweiss @tash.org or by phone at 410-828-8274, ext. 101. ) PAGE 28 TASHNEWSIMER,DEC. 2000/JAN. 2001 DECEMBER 2000/JANUARY 2001
2001-02 Wender of Eve is Calendar of TASH Chapter and Member Sponsored Conferences and Events
March 2001 November 2001 March 10 "Self-Determination: Stories from Those Who November 22-24 Make it Happen" "Community, Cops, Court, Crown, Correctionsa Sponsored by Mid-Atlantic Chapter of TASH national dialogue focusing on people with Lt. Joseph P Kennedy Institute Training Center, intellectual disabilities and the justice system" 680 Rhode Island Avenue, NE, Washington DC Ft. Garry Conference/Banquet Centre, For more information, contact Gail Godwin at Winnipeg, Canada (410) 879-6785, x330 Contact: Marsha Dozar, Event Coordinator at (204) 475-6964 or e-mail: [email protected] March 30 "Equal Justice for All" April 2002 Sponsored by Kentucky Chapter of TASH Highlights include a morning session with Bob April 5-7 Perske and afternoon breakout sessions International Parent-To-Parent Conference Sheperdsville, Kentucky "In the Spirit of Sharing, Making the Connections" For more information, (502) 459-5292 Philadelphia Marriott, Philadelphia, Pa Contact Kathy Brill at (717) 540-4722 or May 2001 [email protected]
May 16-June 11 "Italy Seminar Education in Italy: An Inclusive Approach" Site visits to schools in Rome, Florence, Bologna, To publicize your event or conference in the Parma, and a rural village near Naples. For more TASH Newsletter and on our website, please information, write or call Dr. Carol Berrigan, send the information at least six weeks prior to Seminar Director, Syracuse University at: the event to Denise Marshall at [email protected]; (315) 443-3851 [email protected] or call (410) 828-8274, ext. 103
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PAGE 29 3 05 TASHNERNMER,DEC. 20011/JAN. 2001 'UM Rommom @OEM
due process hearing. Opting for a pre- hearing conference, we heard the school district agree to consult with a university- iary of a Dad Up affiliated program and try to learn how to teach our son.
Against the Four `D's Illatannlber I1994. We attended an IEP (Individual Education Plan) meeting with BY THOMAS BRADLEY The following week I got a call from the two behavior specialists who presented school. They told me to come get my son, recommendations. There were also At first the teachers tried to tell us that he had made an "unprovoked attack" evaluations from autism specialists and he was retarded. Then they tried on another student. I found that my son had Easter Seals. The superintendent of schools to tell us there was nothing wrong pushed a boy who was threatening to blow rejected all recommendations. He felt, he with him. him up with a bomb. The superintendent said, that David had "reached his intellec- said that David "should have known better tual peak" and probably would not succeed Our son, David, was diagnosed with than to believe that." in high school. autism in 1987 when he was five years old. He has attended school here in A few days later, another "unprovoked For the next several months we continued Williford, Arkansas since the first attack." This time an older girl had been to try to get the school to work with our grade. We have tried for many years to pestering David as he tried to eat breakfast. son. But by this time things had gotten so get the services guaranteed to bur son He moved to a different table to get away. unpleasant at school that the only way our by the Individuals with Disabilities She persisted until he tried to push her son would stay there was if his mother, Education Act (IDEA). The school away. She hit him and choked him. The Diane, or I stayed at school with him. We district gave us no assistance in obtain- principal, at a disciplinary conference, took him out of the resource room after we ing for David what, by law, is his right. suggested we take David to a different learned that his teacher only gave him a school. He was now "a disciplinary workbook page and sent him to a corner When he entered seventh grade, he went problem." I suggested that they were trying while she worked with the other students. from having one teacher all day to having to make my son a problem when he was five. Right away it became an everyday only defending himself. I again suggested At mid-term, we put our son into a begin- battle to try to get him to school. We tried staff training in autism. ning algebra class. During the first week of to find out what the problem was. He could class he kept his coat pulled over his head, not tell us; the teachers would not. The We attempted to get assistance from never once looking at the blackboard. At saga of our family's ordeal with our local Advocacy Services [Protection and Advo- the end of the week, when tested, his grade school district and the lack of enforcement cacy (P&A), a state and federally-funded was 100 percent. of IDEA on any level has been lengthy and legal assistance agency], but they told us painful. they did not have the staff to handle all the Again we tried to get Advocacy Services to problems in the state. help us get an appropriate IEP (as called for Stepttemakeir Ili. Meeting with school by IDEA) and extended year services staff. Told them our problems, asked for Novearall= 11%4. We called a consultant (summer education). Nell Bradley of their help. The special ed teacher said David was to come observe our son at school and at office was assigned to help us. We had "just having problems making the change home and make some recommendations several telephone conferences, but she from elementary to junior high school." for the school. The district told us they never came to the school. We learned she After the first nine weeks, "everyone would didn't need help. We filed for our first was meeting with the superintendent and have had time to adjust." We were to wait had agreed to put off any meetings until it out. Denying services. after school was out when it would be too late to get extended year services. Delaying dueprocess. ecttolkft 11994. Meeting with school staff. Told them our problems again, asked for Deceiving parents and children. We were forced to hire a private attorney. help again. David's health teacher told us, Advocacy Services then said it would not "You're wasting my time trying to teach Those are the three Ds of be able to help us because we had a private him." She suggested we get him some specialeducation. attorney. pottery lessons so he could learn to make a living someday. In rural Williford, Arkansas, Mray J1.995. We filed a second request for due process. On the hearing day in June, We insisted that his teachers try to teach. there's a fourthD: the district wanted to negotiate a settle- Death. threats. We asked that staff be trained about Continued on page 29 autism. PAGE 2830 6 TASH Ihrsunm,DEC. 2000 /MAN. 2001 IIROCRITIM (COL L'
DlInaV DLO RD followed the phone conversation with a August 11996. The hearing officer would taaamu 4aC FOLIR TY4 letter containing further confidential not tell our attorney what the hearing rules information about him. would be. "I have a wide latitude," she said. Continued from page 28 "I pretty much make them up as I go along. "Members of Congress, it is time to get real. Don't worry. I'll tell you when you break the ment. With the assistance of the hearing Stop saying that IDEA requires schools to rules." This same hearing officer, who had officer, we worked out what we thought was educate children with disabilities. It is untrue helped negotiate the settlement in 1995, a pretty good IEP. The district agreed to in Arkansas. According to the NCD report, it's found in favor of the district in 1996 and hire an aide to take my place by my son's not true in any state in the U.S. Don't give us threw out everything she had helped us to side, agreed to provide access to computers hope with one hand and slap us down with negotiate. We appealed the decision to and software, agreed to provide training for the other" federal court. staff, and agreed to classroom and curricu- lum modifications as recommended by Advocacy Services declined to help us to In a lot of rural areas, the school district is experts. The hearing officer ordered the fight these invasions of privacy, saying that the biggest employer. We have had death IEP implemented immediately. while the Department of Education and the threat phone calls, break-ins, people school district shouldn't be doing these stopping on the road and yelling at our Aug= 1995. School started and the things, Advocacy didn't want "to make a house. When we got the phone calls traced, school district was already in violation of fuss that would just cause more trouble." the prosecutor refused to prosecute. Once, the IEP. I met with the superintendent who when we got one of the death threat phone told me he had no intention of doing what We found a new private attorney once the calls to court, and the people who made the he had agreed to do. After two hearings, the earlier one told us she could not afford to call admitted to doing it, the judge found school board decided to remove the antagonize the hearing officer by making them not guilty anyway. Then he lectured superintendent from any responsibility for any complaints about him. them for about twenty minutes about why implementing the IEP, putting a teacher in they shouldn't do it again. charge instead. Aril. L9 . At ourannual review conference, the school district proposed to When we have asked people to assist us by That helpful hearing officer, when we throw out everything they had agreed to the testifying in court about what our son contacted her, said she had no responsibil- previous year. The teachers felt they "didn't needs, or about autism, or inclusion, the ity once the hearing was over and the need the IEP," preferring to do "what we State Department of Education learns about decision made. We had to start all over think best." We requested an independent it and leans on the people to scare them off. again. We again contacted Advocacy evaluation. The district refused. Several have told us they will be forced to Services and were told they could not help leave the state. We ourselves been told to us because we had hired a private attorney. §jiriimsmel Summer IL 996. We filed for leave the state, that we would be hurt, that due process again. The hearing officer our house would be burned. The 1995-96 school year was a disaster. denied us a hearing on half of the issues we The IEP was never implemented. We filed raised, a violation of IDEA. Nor did we It may be that nothing we are doing will a state complaint. State investigators came receive a hearing decision in 45 days, benefit our son, but we are determined to in, discounted our evidence, told us the another IDEA violation. carry on this fight to insure that Arkansas school was making a "good faith effort," cannot continue with the three Ds. that we were "expecting too much." We filed a complaint with the U.S. Depart- ment of Education's Office of Civil Rights Our son has not had a chance for his free, Soon several school staffers began a (OCR). OCR declined to investigate. We appropriate public education because the campaign to turn other parents against us. notified OSEP (the Office for Special school district, the State Department of Teachers told parents and students they Education Programs), asking for a legal Education, and the State Attorney General's could not do anything for their children opinion about the state's actions. Thomas office would rather spend their money on since they were having to do so much for Hehir of OSEP notified the Arkansas attorney fees than to educate David Bradley. David. In one open meeting, a teacher Department of Education of the state's They fear that other parents will come right referred to him as "like some kind of mad violations of Part B of IDEA, giving the state behind us, demanding services for their scientist." 30 days to correct the violations. children.
A parent contacted the Governor's office Four months later, Arkansas sent OSEP a A doctor prescribed a laptop computer for asking to have our son removed from the letter saying, basically, that all state David to use as a writing prosthesis. The school. The Governor's office referred her hearing officers had been advised to abide school bought one that would not work to the State Department of Education. A by the 45-day rule. End of intervention by right. We tried to get them to put it in department employee discussed David's IEP OSEP. working order. The district filed due and his diagnosis with that parent, then 307 Continued on page 30 PAGE 29 TASTE &WRITTEN, DEC. 2000 /JAN. 2001 THE EDUCATION CORNER
DIARY OF A DAD UP an assistive technology evaluation. The April 1998. Briefs in our case were filed AGAINST THE FOUR 'D'S district said that computers and software in the Eighth Circuit Court. Arkansas is are for teachers, and admitted under oath claiming, "No child has a constitutional Continued from page 29 that no student other than our son has ever right to an education." process against us to deny David the right had an assistive technology evaluation. to assistive technology. We had to go into August 1998. The school had hired a that hearing without representation. The December 1997. Meeting with the doctor to provide a "second opinion" same hearing officer decided in favor of Williford superintendent of schools. I told evaluation of my son's need for the school. him I needed an agreement to provide my homebound instruction. The due process son with an appropriate education. If I hearing I requested eight months earlier The superintendent of schools gave an could not get that, I would sue him person- now resumed. The school superintendent interview to the newspaper calling us ally. The superintendent did make an tried to ignore his own doctor's second "radicals and troublemakers," and saying agreement, then reneged on it two days opinion. The hearing officer, at the last we are not welcome at any school. We arelater and filed criminal charges against me hearing, had said that if the second outnumbered and overwhelmed. Over for "terroristic" threatening and disorderly doctor agreed with the first, "That's it." I the years we have appealed to our conduct. I was arrested and ordered to stay reminded her. The hearing officer agreed congressperson and senator to intercede away from the schoolthis in spite of the she had made that statement and ordered for us. They have been unsuccessful. We fact that my son has only been able to the school to provide homebound have asked for help from the White House attend school for the past 3 1/2 years when instruction as recommended by the and from the Department of Education. his mother or I went with him and stayed doctor the school had chosen. We have asked for help from every with him so he could come to us when he disability group in the state, but no one needed to. At the following day's IEP meeting, the here is willing to help. We have no school agreed to hire a homebound money to hire expert witnesses, but the A doctor we explained this to gave David a teacher to work with David four hours a state attorney general's office has all the prescription for "homebound education." day, with Diane and I having final ap- state's resources at its disposal. The school told us to "put the kid on the proval of the teacher hired. Other school bus and send him to school like everyone concessions included that the curriculum November 1997. Our case went into else." We filed a request for due process. would be designed to allow credits to be federal court. Arkansas Assistant AttorneyWhile waiting for the due process hearing, earned toward graduation, and that David General Tim Humphries, representing the the school had me arrested for truancy. would have a computer and software at state, claimed in motions he filed that the last. state is immune under the Constitution's At this time we started getting threats that 11th Amendment. Federal Judge James David would be taken from us and placed September 1998. The Eighth Circuit Moody ruled that the state participates in in a juvenile detention facility for failure to Court of Appeals in St. Louis, Missouri, federal programs voluntarily. If the state attend school. For the next several months, heard the state's appeal of our case. wants the federal money, it must abide by Diane kept David in hiding in different Assistant Attorney General Tim Humphries the federal rules. The state filed an locations while I tried to get our due argued that "No child has a fundamental appeal. Finding a way to fund our answer process hearing expedited. The strain on right to education," and that "There is no to this appeal has become nearly a full- them was enormous. law prohibiting Arkansas from discriminat- time job in itself. In that same month we ing against the disabled." filed another due process complaint for March 1998. The court found me not guilty of terroristic threatening and Attorneys Thomas K. Gilhool from the disorderly conduct, but guilty of my son's Public Interest Law Center of Philadelphia non-attendance at school. I was ordered to and Seth Galanter of the U.S. Department of have my son in school Monday morning or Justice argued in support of our family and In response to our go to jail for contempt of court. of IDEA. request to have David receive four hours of instruction per day at home, On the following Monday we had our due November 1998. The school hired a and that he be provided with the process hearing at last. The hearing officer special education teacher to work with necessary assistive technology, the ordered a temporary placement in David at our home three days per week, Assistant Attorney General for Arkansas homebound instruction. The school was four hours per day. The teacher and argued that "no child has a fundamental ordered to provide one hour of instruction right to education," and that "there is no school ignored the hearing officer's order law prohibiting Arkansas four days a week at the local fire station. I requiring a computer and software. The from discriminating against filed a complaint with the U.S. Depart- teacher began instruction using textbooks the disabled." ment of Education's Office for Civil from seventh grade. Rights. Continued on page 31 3 0 8 PAGE 30 TASK lfirsurim, DEC. 2000/JAN. 2001 THE EDUCATION CORNER
chased. Then, as the law plays out, passen- DIARY OF A DAD UP a disability that entitled him to be covered gers learn that they, and only they, are AGAINST THE FOUR 'D'S under Section 504 and ADA. Finally, after responsible for reporting and prosecuting Continued from page 30 two very confusing weeks, David was any driver who exceeds the legal limit. allowed to start classes.
December 1998. We called an IEP When we began this process, David was 12 We discovered that even though we had meeting to demand the school provide the and playing Teenage Mutant Ninja Turtles. moved from high school to community college, some things stayed the same. computer and software. The superintendent Now he is 18, registering for Selective Service, and we are still years away from Administrative personnel made it very said they were unable to find appropriate clear they really did not want him there. resolving his education. software. We presented him with a The administration agreed to provide prepared order form for software we had accommodations for David, but as in high found. All that was left for him to do was Members of Congress, it is time to get real. school, administrator's agreements proved write a check. Stop saying that IDEA requires schools to to be worth very little. At one point when educate children with disabilities. It is we invited an educator from out of state to January 1999. The software and com- untrue in Arkansas. According to the NCD come to observe David in class to help us draw up plans for the future, an adminis- puter are in place. The teacher, however, report, it's not true in any state in the U.S. trator threw him out of the class. Fortu- has refused training about autism. "I know Don't give us hope with one hand and slap us down with the other. nately, the students were older, more all I need to know," she says. mature, and accepted David as an equal. We are truly sorry the system has failed April 1999. Transition plan meeting. In December, David finished his classes at Here's where we were to discuss what we David and us so badly. The Individuals with the community college and was awarded would like to do to prepare David for life Disabilities Education Act was meant to his high school diploma at the local fire after high school. We asked that a voca- assure parents of their children's right to department. I am still under a restraining tional rehabilitation (VR) staff person be Free Appropriate Public Education. We order to stay away from the school. David present to help us figure out what would be started on this quest for the elusive FAPE in is happy he does not have to have 1995. IDEA assured us the purpose of the anything else to do with the Williford available. VR personnel refused to attend School District, as are his parents. until David's final semester in high school. act was to resolve conflicts between parents and schools quickly but in our case, we So much for a transition plan at age 14. We are currently looking for a suitable have faced delay after delay. Once again, Arkansas ignores the law. college for David and looking for a job for me, so we can move from this backward October 1999. The Eighth Circuit Court state. We hope to move out of state as of Appeals issued an opinion in our case. soon as possible. Arkansas' claim of immunity was denied. Update: January 2001 The state must provide services to kids with Meanwhile, our lawsuit against the school district and state Department of Education disabilities. Since last May a few things have happened. continues at a snail's pace. In November, In August, as we prepared to start another we filed a class action suit and consoli- disappointing year with the Williford February 2000. Still waiting for our day dated this case with our original case. We School District, Diane, David and I talked it in court, we feel thoroughly betrayed by the will continue pursuing our lawsuits to try over and decided that we all wanted to find writers of IDEA. To write such a law and to help other children avoid the pain and a way to allow David to graduate as soon as anguish inflicted on David. We still will give parents hope, then do nothing to possible. When we met with the school not be able to have our case heard in enforce it is a cruel hoax to play on parents district personnel to prepare the plan for the federal court until July 2001. But we will already suffering from the requirements of coming semester, we told them of our continue the fight, with the help of our educating a child with disabilities. A report desire to have him finish school as soon as friends at the Public Interest Law Center of by the National Council on Disability possible. We came up with a plan to send Philadelphia. (NCD) shows quite clearly that all states, David to a local community college to take classes which would be considered for high not just Arkansas, have failed to implement The Bradley Family IDEA, and that the U.S. Department of school credits. Education fails to hold states' accountable. Once again it was left to us, the parents, to OOOOO OOOOOO work out the details. We took David to the This entire system is analogous to writing a community college for testing. Based on Reprinted by permission of Mouth law requiring all cars to be driven no faster the results of one test, David was only Magazine. than 65 miles per hour, and providing all allowed to take remedial classes. The OOOOOOO police departments with the money to buy college personnel agreed, after about two advanced radar equipment to check weeks of on again, off again, to allow speeds. Regulations are written, police David to enroll for classes. Then we had to officers are hired, equipment is pur- start all over to prove David had
PACE 31 3L,-,j USN Minium DEC. 2000 /JAN. 2001 NEWSLETTER Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board, diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- torial judgement in selection of materials. Doug Biklen, Chair, Executive CommitteeBob Kafka All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio . Marcie Roth Terms such as "people with mental retardation," "children with autism," and "in- Linda Bambara, Ex-Officio Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Richard Sobsey ment for a product or service does not imply TASH endorsement.For a Wanda Blanchett copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio Jacqueline Thousand 8274, ext. 102. June Downing Lucille Zeph
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