TASH Newsletter, 1999-2000. INSTITUTION TASH, Baltimore, MD

DOCUMENT RESUME

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AUTHOR Newton, Priscilla, Ed. TITLE TASH Newsletter, 1999-2000. INSTITUTION TASH, Baltimore, MD. PUB DATE 2000-00-00 NOTE 298p.; For 1998 issues, see ED 429 404. AVAILABLE FROM TASH, 29 W. Susquehanna Ave., Ste. 210, Baltimore, MD 21204; Tel: 410-828-8274; e-mail: [email protected]. PUB TYPE Collected Works - Serials (022) JOURNAL CIT TASH Newsletter; v25-26 n1/2-12/1 Jan-Feb 1999-Jan 2000 EDRS PRICE MF01/PC12 Plus Postage. DESCRIPTORS *Advocacy; Civil Liberties; Elementary Secondary Education; Program Development; *Severe Disabilities; *Social Integration; Special Education

ABSTRACT This document comprises the nine issues of the 1999-2000 TASH Newsletter. Each issue includes news items, conference information, and articles. Major articles include the following: "1998 TASH Annual Conference: Inclusion Roundtable"; "1998 TASH Conference Keynote Address (Zuhy Sayeed); "Do Not Resuscitate - Whose Choice Is It?" (Nancy Noble); "The Utter Vulnerability of Persons with Mental Disabilities in Police Interrogation Rooms" (Robert Perske); "Closing Brandon Training School: A Vermont Story" (Bonnie Shoultz and others); "Pulling the Plug on the ADA?" (Jonathan D. Ezekiel); "A 'New' Dr. Death at Princeton" (Mary Jane Owen); "The Importance of Arts Education for All Students" (Florence Aversa); "The Promise and Pitfalls of the Workforce Investment Act" (Michael Callahan); "National Efforts To Promote Conversion: Day Programs to Supported Employment"; "Empowering Communication Aid Users" (Rosemary Crossley); "Inclusion Is Happening ...WHERE?" (Rich Villa); "International Human Rights Abuses against People with Mental Disabilities" (Eric Rosenthal); "What Is Culturally Appropriate? Finding a Middle Way" (Alexandra Enders); "Reflections about Positive Behavioral Supports" (Jacki Anderson); "Effective School Practice in Educating Students with Challenging Behavior" (Tim Knoster and Don Kincaid); "The Professionalization of Teaching and Learning for Children with Severe Disabilities: The Creation of TASH" (Ed Sontag); and "An Introduction to Disability Studies" (Perri Harris and Lori Lewin). (Some articles contain references.) (DB)

Reproductions supplied by EDRS are the best that can be made from the original document. TASH Newsletter, Volume 25, Numbers 1/2 through 12/1, January/February 1999 through December 1999/January 2000.

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PERMISSION TO REPRODUCE AND U.S. DEPARTMENT OF EDUCATION DISSEMINATE THIS MATERIAL HAS NATIONAL INSTITUTE OF EDUCATION BEEN GRANTED BY EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) Irchis document 1\1eArs-k-N-Y, has been reproduced as received from the person or organization originating it. Minor changes have been made to improve reproduction quality. TO THE EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) Points of view or opinions stated in this docu- 1 ment do not necessarily represent official NIE position or policy.

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ALSO INSIDE: Over-Representation of Black Students in Special Education and Highlights from the Inclusion Roundtable jS 0' I L a MARK YOUR CALENDAR

APRIL DECEMBER Stories of Change: Annual CAL-TASH Summer CAL-TASH Statewide Symposiums in Santa Barbara Conference July 26-27"School Inclusion" April 22-24 July 29-30"Positive Behavior Support" San Diego Marriott-La Jolla, CA Contact: Eileen Medina, Contact: Eileen Medina, Phone: 805-967-2042 Phone: 805-967-2042 E-mail: [email protected] E-mail: [email protected] 1999 Toronto Summer Institute The Sun-Tash/Arc Conference July 3-9 April 22-23 Toronto, Canada Albuquerque Hilton Contact: Inclusion Press Contact: Liz Keefe, Phone: 416-658-5363 Phone: 505-277-0987 Email: [email protected] Emaillkeefe @unm.edu Do you have an upcoming TASH chapter meeting or member-spon- SEPTEMBER sored conference that you would like MAY National Spinal Cord Injury to announce in the Newsletter? Send Education in Italy: Association notice of the conference to Denise An Inclusive Approach Annual Meeting and Education Marshall at [email protected] at least May 18-June 9 Conference 6 weeks before the event date. We Site visits to schools in Rome, September 26-29 will make every effort to include the Florence, Parma and other locations Washington, D.C. Marriott event in the meeting calendar. Contact: Dr. Carol Berrigan, Seminar Metro Center Director, Syracuse University Contact: Denise Marshall Phone: 315-443-3851 Phone: 410-828-8274, ext. 103 Email: [email protected] Email: [email protected]

BEST COPY AVAILABLE PAGE 2 4 TASH Newsletter, Jan./Feb. 1999 JANUARY/FEBRUARY 1999

TABLE OF CONTENTS Self-Determination Coordinator or visit our web siteat Calendar of TASH Chapter Synthesis Project www.uncc.edu/sdsp Conferences Page 2 The Project Team is seeking literature and other materials related to SD research Self-Determination The University of North Carolina at Charlotte, through a grant from the US and practices.Examples may include Synthesis Project Page 3 Department of Education Office of Spe- published or unpublished manuscripts, TASH's 1999 Action Priorities Page 4 cial Education Programs (OSEP), iscon- project reports or evaluations, examples Update on TASH Committees Page 5 ducting a review and synthesis of the of curricula, or other materials. The Self-Determination Synthesis 1998 Inclusion Roundtable Page 6 knowledge base and best practices related to self-determination (SD) for students. Project is co-directed by Wendy Wood 1998 Conference Highlights Page 8 The purpose of the project is to improve, and David Test, with Diane Browder Keynote Address by Zuhy Sayeed Page 12 expand, and accelerate the use of this and Bob Algozzine serving as Research 1999 Call for Presentations Page 15 knowledge by the professionals whoserve Associates. A Project Advisory Team, consisting of consumer/self-advocates, Keynote Address by children and youth with disabilities,parents who rear, educate, and support their school staff, advocacy organization staff, Laura Hershey Page 21 children with disabilities, and students parents, and researchers has been Over-Representation of Black Students with disabilities. convened to help guide the project and In Special Education Page 25 The synthesis component of the ensure that the outcomes are appropri- Washington State Update Page 31 project will be accomplished througha ate for all consumer groups. review and meta-analysis of existing SD For more information about the literature and a series of case studies of Self-Determination Synthesis Project,or to nominate an exemplary site or piece TASH (formerly The Association for Per- four exemplary sites that aresuccess- of literature, please contact: sons with Severe Handicaps) is an inter- fully implementing SD interventions. national advocacy association of people The Project Team is currently seeking Meagan Karvonen, Project Coordinator with disabilities, their family members, .nominations for exemplary sites.These Self-Determination Synthesis Project other advocates and people who work sites are schools/school districts thatare Special Education Program University of North Carolina at Charlotte in the disability field. TASH actively pro- implementing practices intended toen- hance students' self-determination. IQ 9201 University City Blvd. motes the full inclusion and participation Charlotte NC 28223-0001, Phone 704/547-3736 of persons with disabilities in all aspects NOMINATE A SITE contact the Project E-mail: [email protected] of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- AvIIII, enue, Ste. 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e- mail: [email protected]. df,

ill= Jiff. 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] For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at Stretching the boundaries of what is possible (410) 828-TASH, Ext. 103, e-mail:[email protected] For questions about the 1999 Annual TASH Conference, call: Kelly Nelson, Building communities in which no one is Conference Coordinator, at (410) 828-TASH, Ext. 105, e-mail:[email protected] segregated and everyone belongs; For questions about membership, conference registration or exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diversity; For information on government affairs or fundraising/development, call: Marcie Advocating for opportunities and rights; Roth, Director 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, newsletter submissions and advertising, or publication sales, call: Priscilla Newton, Supporting research and disseminating Director of Marketing and Communications, 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; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE j TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLE FROM THE EXECUTIVE DIRECTOR

It's more than the Newsletter, the commit- strategic planning process and to invite tees, the Executive Board, the staff, the your input and participation as action important resolutions, the governmental plans are developed and implemented. affairs presence and the other things that We invite all members to affirm Barb we do. TASH is a values-driven bank of Buswell's description of TASH by partici- individuals who actively live out a shared pating in designing and carrying out mission and make a difference in people's TASH's 1999 Strategic Plan. lives, day-to-day" The Board identified five priorities As it does each year, TASH's Execu- relating to advocacy and five relating to tive Board held its annual meeting this the operation of the organization. The year in conjunction with the national priorities are listed below. Next to each From the Executive Director conference. Over its two days of meetings priority I have noted the name of the in Seattle, the Board undertook a struc- Executive Committee member who is BY NANCY WEISS tured strategic planning process to adopt a taking the lead in developing an action work agenda for the coming year. Com- plan related to that priority. Contact As Barbara Buswell, a former TASH mittees participated in this process by information is provided for each of the Board member once said, "TASH is reporting to the Board the issues they felt Executive Committee members. The much more than an exciting yearly should be included in TASH's 1999 Board welcomes your input in the conference. It's more than the Journal that agenda. The purpose of this article is to development and implementation of has articles that have helped us many update the membership about the action plans for each of the identified times to get the things my family wants. priorities that were set as a result of the priorities.

TASH's 1999 Action Priorities Contact information for the five members of the Executive Committee-is prOiiided. Top Five Advocacy-Related Priorities: below. If you have interestin*bt the .specific topics listed, please.doloi.'."'7 hesitate to contact the Board m_ emlier Lead Board Memberassigned to that priority , 1. Assure that IDEA is implemented and enforced Donna Gilles LIZ Healey (President) 2.Assure the right to communication for all Phone: 412-995-5000, ext: 493 people with disabilities Doug Biklen Fax: 412-995-5001 3.Support the passage of MiCASA Joe Wykowski e-mail: [email protected]

4.Strengthen TASH's collaboration with Doug Bilden (Vice President) general educators Liz Healey Phone: 315-443-2699 Fax 315-443-2274,' 5. Work toward justice for people with disabilities e-mail: dpbiklen6iYr.echi involved in the criminal system Lii Obermayer Liz Obermayer (Secretary) Phone: 781:894-3600, ext:.i055 Fax 781-398-0305 ...... , Top Five. Operations-Related Priorities: e-mail: [email protected] 1. Improve our web site and electronic communication Doug Biklen Joe Wykowski (Treasurer) Phone: 503-292-4964 2.Synthesize resolutions and develop Fax 503-292-6485 new resolutions Liz Healey e-mail: 74452,[email protected] 3. Strengthen/Support chapters Donna Gilles Donna Gilles 4. Develop a handbook for students on IDEA and (Chair, Executive Committee) self-advocacy Liz Obermayer Phone: 352-846-2760 Fix: 352-846-0941 5. Fiscal development Joe Wykowski e-mail: [email protected]

BEST COPY AVAILABLE PAGE 4 6 TASH Newsletter, Jan./Feb. 1999 Committee Plans and Progress TASH has over twenty-five com- Governmental Affairs: Create incentives for mittees that meet at the conference, The Governmental Affairs Operating Commit- paraeduacators to become and in some cases throughout the year, tee recommended focus on the following three involved in TASH and in the to pursue special areas of interest. priority areas: conference. Many of the committees met in Seattle IDEA Implementation and Enforcement Examine standards for to outline plans for the coming year. Passage of MiCASA paraeducators to ensure that Highlights are as follows: Passage of a Work Incentives bill they uphold integrity for individuals with disabilities. Chapter Operating Committee: Other issues the committee recommended Recommend & advocate The Chapter Operating Commit- that require TASH's attention include: change where standards do not tee held their Chapter Leadership Day Lead the effort to elect disability- accomplish this goal. on the Wednesday preceding the con- friendly political representatives at ference. The day was an unprecedented every level. Personnel Preparation: success with 31 chapter leaders, repre- Support legislative efforts to close The committee discussed a vari- senting thirteen chapters, attending. institutions and oppose the use of ety of topics of interest and broke into Goals for the coming year include: funds for institutions. sub-groups to develop action plans for Develop a chapter handbook. Housing each of these prioritized areas. Top- Survey chapters to determine Legislation to promote positive ics discussed include: the content of regular reports approaches and prohibit the use of Unified programs: do they from central office. aversive procedures address ALL students? Plan the 1999 Chapter Leadership Content/competencies for Development Day around presen- Leisure and Recreation Committee: specialists tations by different chapters. This year's activities will include: Changing roles of special Coordinate efforts with the Mem- Continue to represent TASH on the educators bership Committee. Outdoor Regulatory Negotiation Changes in philosophy of best Provide support to struggling Committee of the U.S. Access Board. practices not reflected in current chapters Report results of this process in the TASH teacher preparation programs Newsletter. Opportunities for students with Community Living: Establish a data base of TASH members to disabilities to attend college Action items for 1999 include: form a Leisure and Recreation Network for IHE need to model recom- Assist with development of a information sharing. mended practice book on community living. Collect and disseminate best practice sto- Restructuring process Work with Media Committee to ries on inclusive recreation experiences. IHE faculty need for continued disseminate stories about people professional development with disabilities as contributing Membership Operating Committee: National data base of programs citizens. This year's plans include: in severe disabilities Support MiCASA. Focus on both maintaining current mem- Voice for all concerns Look for ways to sponsor broad bers and recruiting new members. research concerning the health/ Work toward better communication be- Positive Approaches safety and accountability of tween the Chapter Operating Committee Committee: people in individual support sys- and the Membership Committee. Goals for this year include: tems versus larger settings. Study additional member benefits that Revise the TASH resolutions could be offered. relevant to positive behavioral Early Childhood: approaches. Plans for this year include: Multicultural Committee: Interface with the new commit- Develop a new resolution on Goals for this year are as follows: tee on the legislative and policy Early Childhood. Send a letter to President Clinton urging aspects of positive approaches. Establish linkages with other the United States to rejoin UNESCO. Disseminate success stories and organizations. Continue to include a strand on research which validate positive Re-submit grant proposal to multicultural issues at the 1999 approaches. develop a comprehensive conference. Create resource listings. resource and information guide Provide opportunities for discussion of for families of young children international issues. All committees welcome additional with significant disabilities. Create partnerships with TASH's interna- energy and interest. TASH members are Plan a crackerbarrel or strand tional counterparts. invited to participate in committee activi- for next year's conference. Review/revise relevant resolutions. ties.For information about contacting Work with JASH editorial staff to the chairs of any of these committees, call plan a topical issue. Paraeducator Committee: the TASH central office at 410-828-8274, L This committee's goals are as follows: or e-mail [email protected]. BEST COPY AVAILABLE TASH Newsletter, Jan./Feb. 1999 1998 INCLUSION ROUNDTABLE 1998 TASH Annual Conference: INCLUSION ROUNDTABLE

We are pleased to present believes that, too. He ended up getting excerpts of the proceedings a high school diploma in New York, from the 1998 Inclusion going to a regular education program Roundtable, a lively discussion facilitated throughout. It was very difficult. He by Dorothy Lipsky and Alan Gartner from had to have quality teachers who the National Center on Educational constantly had to think about how to Restructuring and Inclusion, located at The present information to a different kind Graduate Center in New York. Panelists of learner. Even though I told you he included: Rich Villa, Consultant; Phil got a high school diploma, he actually l-r: Alan Gartner, Inclusion Roundtable facilitator; can only read at a third grade reading level. Ferguson, National Institute for Urban School Rich Villa, one of the panelists; and Dorothy Lipsky, Improvement at the University of Oregon; co facilitator of the Roundtable. Now, how did those high school Mara Sapon-Shevin, School of Education, teachers [accommodate Danny's learning Syracuse University; Charlene Comstoch- that shift was that we knew that the outcomes style]? They thought of alternate ways of Galagan, an advocate from the Arc of Texas; in the self-contained [classes] meant that they presenting the material because he could and Jacque Thousand, College of Education, were not graduating from high schools. [In- understand the material even though he California State UniversitySan Marcos and dividuals] were still living at home to a large could not read it. He couldn't write. They TASH Board Member. degree, and they were not getting adequate had to send note takers into class. They The audience was a balanced mix of employment skills. had to figure out how to put material on parents (some who have children who are But now we have done the research, tape, get extra kinds of videos and books, included and some who want inclusion but federal officials have done the research, cooperative teaching, having kids work have not been able to convince the school everybody has done the research enough together, whatever it took. Thank goodness system to cooperate); consultants; princi- to know that it hasn't worked. We made technology came in at that time and helped pals (of both fully included and segregated- some mistakes. It doesn't mean we are Danny get that high school diploma. moving-to inclusive schools); doctoral blaming the special education teachers or After Danny was in a self-contained candidates; faculty members; special administrators, because they have had self- kind of employment situation (that did not education coordinators; educational contained classrooms. That is what the law work), he went to a college in Boston psychologists; statewide technical assistance said to do. called Lesley College. They are very coordinators; and special education and Danny, my son, was born 29 years ago interested in working with children who regular education teachers. with Spina Bifida, a pretty severe birth have learning disabilities. They also train defect at that time. I ran for the county teachers in a very wonderful program. Dorothy Lipsky school board and I won. When Danny was Danny went there. He was the first child It is really truethe power of what the first child with disabilities in the public with physical disabilities. He flunked out. this assembled group of people know schools, parents asked: "Was that part of He flunked out because what we had about how to solve problems. That is the reason?" Well, it surely didn't hurt. learned in high school we did not transmit critical. This isn't really rocket science; it is We do have to remember that we are the to the college. just good problem solving skills and best advocates for our own children. In some ways maybe we thought he having a group of people that can collabo- Danny continued to surprise everyone was really going to be able to do this rate and use their collective energy to and the teachers were very frightened by without all of the supports and without our really keep going forward. having him in a regular education class in a still needing to be involved. You now how Let me just tell you my own personal wheelchair. It gave them lots of problems it is, you think he is grown up, graduated story for a moment. Parents sometimes and lots of cause for reflection. The best from high school and you ask yourself, wonder if it is still the right thing tohave news that I have to tell you is that while I how can I keep mothering to that level? their children in inclusive classes.I want often thought of the Henry Viscardi School But the fact is he needed some supports to help you remember in terms of all of perhaps being the place for Danny they the same kind of supports he needed in the research and all of the personal stories had a lot of children with Spina Bifida high school. He begged them to take him that parents share with each other that the there the fact of the matter is that we as back the second year and they did. With outcomes for youngsters in those general parents question sometimes "Are we doing the supports built in he was successful. education classrooms, when we put the the right thing by placing them in that Danny met a girl there, Heather, who supplemental supports in there, is very situation?" also had learning disabilities. They fell in powerful. I believe very strongly that for Danny love. I got a phone call and he says: Partially the reason we wanted to make it was absolutely the right choice and he Continued on page 7 PAGE 6 8 TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLE 1998 INCLUSION ROUNDTABLE

INCLUSION ROUNDTABLE ever, we have had laws since 1975. If we move on to the next grade. There has been Continued from page 6 had been implementing the previous no systematic initiative, no transition versions, a lot of what you have described planning and you are right back to the "Mother at the end of the year I am not as obstacles and barriers would not beginning. going back. Heather is finishing the necessarily be in place. I see a lot of parents with a lot of program and we are going to Atlanta, The things that I am excited about in energy in the primary grades. If that Georgia to live." IDEA Reauthorization would certainly be: system does not change by the time the In fact, Danny has lived in Atlanta 1. Access to the general education child hits middle school or high school, the with Heather for the past 4 years. He curriculum for children with disabilities. complexity of those systems with the works in the college in a security office 2. Inclusion in assessment is just an numbers of teachers they have, [the there with a vocational rehab counselor to absolute critical thing because so much parents] are pretty worn out. On the other do job coaching. She really helped Danny assessment has been done and disregarded hand, I have seen school districts that to do his job. Heather also has a job in a to this population of students. continue to evolve and move to the place large company doing wonderful work. 3.The fact that there is a place where it where there is more of a systematic These kids have a wonderful quality of life says for the first timethat students response. I cannot tell you the stories and the themselves, whenever possible, should be For me inclusion works in a place things that they have told us about how included in meetings. where: happy they are living there. People are busy articulating the vision That's my parent side. The other part With all due respect there comes a of what inclusion is and what it is not. of the work that I do is the professional time when you are not going to be your People have redefined the roles. side. It is really looking at school districts child's best advocate. We have to em- People are actively figuring out what to do that have been restructuring and are trying power children and youth to become differently. Everybody's roles, rules and to take the concepts of inclusion and to go self-advocates and get them involved in relationships change. further. We have done research in about the process early on. Just as parents can People are doing other kinds of 1,000 school districts and we have asked come with advocates, kids should be able school reform and restructuring. We need the teachers and the administrators and the to come with advocates or lawyers in to clarify for people that our goals are the parents and the students themselves how training. same for all children. General ed school they did it. We have lots of information We have kids come to meetings as reform initiatives such as multiage which I will share with you. Now let me young as kindergarten and first grade. Now grouping, whether you are doing that or turn it over to our colleagues here to give a you may not want to have them come to block structuring or constructivist couple of words or thoughts about where the whole meeting and you may want to approach to learning and multiple they are in terms of thinking about the new have some opportunity to be flexible. intelligence theory, all of these things are federal regulations, IDEA. How the law is Question: Are there any things that you complimentary and supplementary to going to make a difference for the diverse have noticed in your work with school districts inclusion- so we have to help people see groups that are here so that it can help that have been particularly valuable in terms the interconnectedness of that. them move forward in a strategic way. of what a school system really needs to think I have never seen inclusion work for about for good inclusion? a child or within the system if there is Rich Villa not a strong sense of collaboration. I had the good fortune of living in the Rich Villa The heart of it all is training. The more State of Vermont for many yearsthe state I think I see inclusion occurring on a we can advocate the preservice change, the that leads the United States in the inclusion couple of levels. I see inclusion occurring more it works. of children with disabilities. I was the for individual children. You do not have a Take time to celebrate. Whether you administrator in the school district that was system that is ready for those children. You are the teacher or the parent, it is not probably one of the first totally inclusive have pushed, you have pleaded, you have perfect and we have to keep working school districts in the United States. Since evolved a relationship so that somehow the toward it. It takes 7-10 times the energy to that time for about the last four years or so child shows up in a classroom. I see in that create positive change as it does to I have had the opportunity to travel and scenario a classroom teacher that is scared maintain the status quo. I think if we are work with a variety of people on their and frightened and I see a parent who ends going to have the energy to do that we journey, their evolution toward this thing up being the mentor to the classroom better be celebrating the process, the called inclusion. teacher, teaching the classroom teacher journey as well as the outcomes. Without a doubt I am convinced that how to do accommodations and modifica- the number one determinant of whether tions. Sound familiar to anyone of you? Question: One of the barriers that we a child is included is quite simply the Unpaid mentor. Pro gratis employees. And have run into isn't even their lack of education, place that you happen to live at the time don't you have [an outside] job because but their lack of willingness. I know that some and the disposition of the educators in then you are obviously not interested in of that is fear, but how do we change people's that community. I am encouraged by the your child's progress. Just when that attitudes? changes in IDEA Reauthorization. How- teacher has got it- your child is ready to Continued on page 27 PAGE 7 TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLE 9 Vut14p e .1, Cd.) actco The1998 Q.) Conference wasfilled TASII Conference9 8 s/13.11TVIL -11-0-4k * e_co *Ail EL. 0 111

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BESTCOPYAVAILABLE PAGE 8 .1 0 TASHI Newsletter, Jan./Feb. 194q 1998 ANNUAL CONFERENCE twork and lots o.fspecid? eto epe ,ze4, tiltV presto (1);kklittlaYta lr tecin 0,1104 Lisa Alan Berger (standing) led Micah Taylor a appeared in group of hearty person at themedia festival souls in early . screening of TheFlowering - morning yoga of. a Childwith Disabilities," activities. his father Ron's video-taped journey of Micah's experiences.

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TASH conferees received greetings from individuals and groups representing many different languages, countries and communication methods.

Conference attendees joined members of the Let's Dance Band as they entertained the audience

Club TASH

James Meadours, Joe Meadours and Liz Obermayer carried the TASH banner during Friday evenings vigil.

one of Judith Snow (seated left) Jodoch-Ktng, Sharon at the and rally announcer the speahers Lyle Romer (far right) vtgli candlelight

BESTCOPY AV BLE PAGE'S 11 TASH Newsletter, Jan./Feb. 1999 1998 CONFERENCE WRAP-UP

cures 7-, '6**6) 1998 Conference Registrants 2397 Total Registrants

Student Administrative

4 8% 10% '64°IIStaff development ASSGee:0r. 6% Adult Services/Employment 7% 60'4 Early Childhood Special Ed. 2% 1 2% Educator/Teacher 9%

Social Worker 3% Government Self Advocat 4% 4% Higher Ed 2% Related Services Interested Indiv/Advocate 5% 1% Public Policy Advocate Other/Unknown 4% 7% Prof/College/Univ Parent/Family 5% 12%

The 1998 TASH Conference, "Creating Futures Together", was attended by 2,397 people from all 50 states and the District of Columbia! We also had extensive international representation that included attendees from Australia, Bermuda, Bulgaria, Canada, England, Hong Kong, Japan, Malta, New Zealand, Singapore, Sri Lanka, and Viet Nam. We knew the Seattle-based event was going to be good when, just as registration officially opened on the first day, the sun broke through the clouds and shone brightly into the atrium of the convention center. That symbol of warmth, energy and optimism exemplifies what many TASH conference attendees fondly refer to as "the spirit of TASH." That spirit was indeed present in full force this year, with over 470 sessions. Participants rated the sessions as excellent, with professional, expert, and enthusiastic speakers. The highlights of the conference, as evaluated by participants were:

The quality and variety of sessions offered The expertise of the speakers Excellent location/facility The well-organized logistics of the conference The networking opportunities

Many thanks to the conference committee, the presenters, the strand coordinators, the reviewers, the local committee, the exhibitors, the sponsors, the TASH Board and staff, and all of the attendees who make this incredible and ever-growing event so successful. Your efforts and energy sustain many folks throughout the year in their struggles for inclusion and equity for all. Make your plans now to join us in Chicago, December 8-11, 1999 for the TASH Annual Conference: "TASH 2000: Our Turn Now."

BEST COPY AVAILABLE PAGE 10 12 TASH Newsletter, Jan./Feb. 1999 1998 ANNUAL CONFERENCE

Duane French Zuhy Sayeed Robert Williams

1998 Collaboration Award This award was given to the team that assisted Waddie Welcome to realize his dream to live within his chosen community. Theirs is an 1998 Positive Approaches Award extraordinary story of Waddie's personal mission to leave the nursing The 1998 Positive Approaches home and successfully live in the community. Mr. Welcome's circle of Award was presented to Herb Lovett friends listened to him, learned to communicate in his language, and posthumously in honor of his work, used person-centered planning to enable Mr. Welcome to live in the which had a profound influence on the manner of his choosing. lives of people with disabilities, their Collaboration Award Recipients: Waddie Welcome, Deacon Washing- family members, supporters, and policy ton Hart, Susan Earl, Emily Earl, Dottie Black, Jane Fishman, Tom Lamar, makers around the world. Herb's Hermand and Linda Friedman, W.W. Law, Regina Thomas, Mary Welcome commitment to people who were Williams, Margaret Welcome Jackson, Ms. Addie Reeves, Debra Selman, routinely punished or hurt in the name Jackie Immel, Lester Johnson, Naomi Brown, Kathy and Jeff Alden, Clarence of treatment, as well as those who were Peterson and Tom Kohler Michael Dowling accepted the beginning to take their rightful places as Positive Approaches Award on leaders in the self-advocacy movement, rfr Herb Lovett's behalf. will live on in his writings and our hearts.

1998 Thomas G. Haring Award The First Annual Thomas G. Haring Award was given to a group of researchers who conducted two exemplary studies sur- Waddie Welcome (2nd from left) and several members of His Circle of Friends rounding a single applied problem how to design an effective intervention that will 1998 Media Ward support the needs of a parent whose child Although they were unable to be present to accept their award, with significant disabilities displays diffi- TASH proudly presented the 1998 Media Award to the investigative cult behaviors in community settings. The team of reporters from the Hartford Courant for their series of articles, Haring Award recognized the authors for Deadly Restraint: A Hartford Courant Investigative Report. The series sites the quality and significance of their articles the results of a 50-state survey which confirmed 142 deaths in mental on Parent-Professional Partnership in Behav- health and mental retardation facilities and group homes nationwide ioral Support which appeared in the Win- over the past decade. The series gave voice to the unheard protest of Glen Dunlap accepts the First ter 1997 issue of JASH. those individuals who are no longer here to fight on their own behalf. Annual Thomas G. HaringAward. Thomas G. Haring Award Recipients: Bobbie J. Vaughn, Glen Dunlap, Media Award Recipients: Dave Altimari, Dwight F. Blint, Kathleen Megan, Lise Fox, Shelley Clarke and Millie Bucy. Eric M. Weiss, and The Hartford Courant

BESTCOPYAVAILABLE PAGE 11 13 TASH Newsletter, Jan./Feb. 1999 1998 CONFERENCE KEYNOTE

Zuhy Sayeed and her husband, A 1998 TASH Conference officially placed on the agenda of the UN Raffath, became active in the field Keynote Address: Human Rights Commission. The UN of differing abilities in 1982. Standard Rules on the Equalization of Today, their dedication to human rights Opportunities for Persons with Disabili- and community living is a family commit- ties, The Salamanca Declaration, ment. Zuhy was appointed to the UNESCO's clear message and direction on President's Tash Force on Inclusive ZIIHY inclusive education, The Managua Education and to the United Nations Declaration all the UN instruments that Panel of Experts for the Monitoring and promote equity for persons with disabili- Implementation of the Standard Rules for ties can now be reinforced strongly the Equalization of Opportunities for SAYEED within our governments and within the Persons with Disabilities. Zuhy believes special agencies of the UN that work that effective community-building can be actively in regions around the world. achieved through collective advocacy. TASH was honored to host Zuhy Sayeed as one of the keynote speakers during the 1998 Annual Conference. Following are Human rights are excerpts from her keynote remarks. indivisible. Different sets of human rights do Before I begin, I would like to introduce myself and Raffath, as parents, not exist for first. All our four sons have taught us so different people. much, and the joys and the challenges of economic and cultural structures, rather parenting have been augmented by the than in the nature of their disability. Too experiences that have made our family often human rights are thought of only in who we are. What I will present to you terms of protection from the atrocities of This signifies a progressive shift in today is reflective of our family commit- war, repression or discrimination based thinkingfrom charity to equity and full ment to the movement for inclusion or, on traditional thinking. citizenship - that parents, advocates, as we call it in Canada, the community The Universal Declaration of Human individuals with developmental disabili- living movement. Rights rose from the ashes of the gas ties and the organizations we belong to, This year, 1998, is the year that the chambers of the Second World War. The have advocated for over the past 40 years. world is reviewing and examining their first victims were persons with disabilities In Canada, the Canadian Association commitment to the Universal Declaration - people whom we often forget in our for Community Living (CACL) and its of Human Rights. Indeed, it is a time to remembrances. Even today, in all of the provincial and local associations have be reflective of the deep commitment to recent genocides in war and in situations celebrated 40 years of advocacy. The the elimination of horror and discrimina- of natural disasters, persons with disabili- founding parent association marked its tion that occurred over 50 years ago. ties are considered expendable. Society 50th year. Fifty years ago parents gath- Eleanor Roosevelt and John Humphrey, traditionally defends the human rights of ered around living rooms and informal an American and a Canadian, authored a people when there have been violations meeting spaces to give voice to their dream of global, universal protection for of rights based on gender, poverty, age, dreams of equity for their sons and all human beings. They were visionaries religion, race, issues related to aboriginal daughters. This national association of who realized that in order for sustained, people and children, justice, effects of parents, professionals, and community world peace all citizens had to be free, war and oppression, employment, advocates has its roots in intellectual equal and honored. education, economic prosperity and disabilities. Today, it is evolving into an Fifty years later, the rhetoric of health. Even human rights organizations association that is committed to creating equity, protection and opportunity still do not include issues of persons with an inclusive society that celebrates all exists. There remains a large gap between disabilities in their agendas, even though forms of diversity. the promises of the Declaration, our own issues relating to persons with a disability Our international federation, beliefs and actions, and inclusion of all cut across all sectors and all walks of life. Inclusion International, is a collective of people within our society. Persons with a Human rights are indivisible. over 179 national organizations repre- developmental disability are among the Different sets of human rights do not senting almost 110 countries. It is one of most marginalized, the poorest and the exist for different people. 1998 is a year the six non-governmental organizations most discriminated members of their that will be marked in the chronicles of (NGOs) that works actively with the UN communities. For persons with a history as issues that face persons with and other world partners to promote the disability, their marginalized status is developmental disabilities situations of human rights of persons with develop- rooted in attitudinal conditions, which extreme poverty, neglect, and abuse to mental disabilities and their families. The are reinforced by political, social, name but a few have finally been Continued on page 13 PAGE 12 14 TASH Newsletter, Jan./Feb. 1999 1998 CONFERENCE KEYNOTE

Zuhy Sayeed gated practices in education in the guise Continued from page 12 of inclusion. I emphasize again Until we embrace the idea that our stories we have to share are many. They that every human being world is interdependent and that we all signify the true experiences that we have have skills that can be learned to contrib- had over years of denial and oppression. has potential. It is the ute to the richness of this diverse world They demonstrate the injustices and the limitation of opportunity, in many different ways. Until we take effects of labeling that have denied attitude and the responsibility to establish and nurture opportunity for millions of children and environment that prevent partnerships and coalitions with human adults with developmental disabilities the innate potential of rights organizations and others so that and relegated them to a life of depen- disability issues are inserted into dency, segregation and poverty. every child and adult everyone's agendas. Until we become part Labeling is insidious. It creeps into with developmental of the forcenot separatefighting for our lives couched in everyday, seemingly disabilities from social justice for all people. For if we acceptable language. It convinces us that being realized. continue to separate ourselves, that is it is the only way that our sons and what society will perceive our goals to be. daughters will have their 'extra ordinary' Until we work collectively to needs met. It creates a culture and a overturn repressive laws that are being mindset [of] disability that grips the flaunted as protective laws. The vigil general public right in the beginning and young man, full of confidence and way today will mark the advocacy that we once that sets in, the mindset is difficult past the prediction of only 'making grade must be engaged in here as well as in the to change. Even our own language 3 or, at the very most, grade 5.' communities that we will return to after creates expectations that have its roots in Personally, as parents of two young today. Until we demand real justice for medical terminology that is unacceptable men with different abilities, I can attest to the murders and abuse towards children in today's framework of the human rights the fact that the young people around our and adults with developmental disabili- of our family members and friends. sons in school, in the community, in ties and, in turn, examine the reasons Labeling seduces us into believing that, scouts, judo and in soccer, have an innate why so many people with developmental once labeled, our children will be "fixed" sense of fairness and inclusion. Children disabilities face an unjust legal system. or "cured" provided we agree to a life don't see differences; they see gifts. As a Until we combat the tired arguments of segregation and the denial of true preschool educator for over 16 years and of the "cost factor." The Roeher Institute, opportunities to realize the inherent an elementary school teacher for some CACI's internationally acclaimed research potential that every human being does years prior to that, I can attest from an institute on disability and social justice possess. educator's point of view, that children are policy, recently participated in a study I emphasize again that every human by nature inclusive.I can tell many that researched the cost factor for being has potential. It is the limitation of stories of the unconditional inclusion excluding people. The results of the opportunity, attitude and the environ- through the eyes of a young child. study reported that not only does denial ment that prevent the innate potential of Resistance to successful inclusion has and segregation cost money, but it also every child and adult with developmental come from schools where teachers had results in huge sums of money in lost disabilities from being realized. You have fixed ideas of the disabilities and limita- productivity. When we all begin to talk in seen living proof over the last two days. tions of their students. We have faced those terms, we will then get attention. Real life potential that could have been resistance and disbelief before, and will Until we ensure that fast-paced written off in Sue [Rubin], in Bob continue to find pockets of fear and lack scientific progress includes checks and [Williams], in Micah [Taylor]. of awareness and knowledge in our balances that will preserve and protect Bishop Tutu, in his address to the colleagues, peers, and in the community the natural diversity of the human race, International Conference on Human at large until we make real change. Until we will see resistance until then. We will Rights last week in Canada, spoke about we demonstrate that persons with encounter questions and the demands for the resilience of the human spirit. Indeed, developmental disabilities can learn, play, `proof' that this `inclusion' works. The as parents and advocates of persons with live and contribute meaningfully to their proof is beginning to happen, but only developmental disabilities, we see courage, community, their state and their country. because a small group of us are insisting strength and the perseverance towards a Until we speak loudly to the fact that any that labels kill the chances of our goal demonstrated every day. kind of segregation in our schools, children being treated as full citizens, and Our story began 16 1/2 years ago. workplaces and in our communities does that despite labels and traditional Through those years we have seen a child lead to a lifetime of being set apart, thinking, we will insist that our children our child who couldn't walk or dependency and no contribution. The be included in every aspect of commu- talk, be encouraged to learn sign lan- Canadian Supreme Court decision, nity life. We are pushing the envelope so guage. The child we were advised to unfortunately, has promoted educational that the proof will be there for the future. send away those many years ago is now a apartheid which has encouraged segre- 15 Continued on page 14 4 PAGE 13 TASH Newsletter, Jan./Feb. 1999 L' 1998 CONFERENCE KEYNOTE

Zuhy Sayeed the lessons of inclusion are being noticed. Continued from page 13 Inclusion the word itself conjures As parents and a picture of belonging, of being part of And we welcome the partnerships we community members woven threads of colorful fabric which have here today which will make that are the communities we live in. Not happen. As parents it is our role to fulfill we play a dual role in separate, not apart, not in expensive, our dreams and to let our children dream bringing up not only our special systems that will be unsustainable their dreams. For as it has been said, children, but also and ineffective in the end. Rather, without dreams, nothing happens. raising the communities together as one community and as one All families need warmth and in which we want our people as we were meant to be. Abraham protection to carry out the precious roles Lincoln said,...All men are considered of bringing up children, all of whom children to live. equal..." It is only this inclusion, this teach us valuable lessons. Lessons of complete belonging together in all our hope, of joy, of strength and indomitable glorious diversity, that will promote the courage in the face of the harshness of full participation and the celebration of the world. Our children prove to us that dren, who have the opportunity to grow our strengths in the world of tomorrow. even in the most challenging situations, up with their peers and with all the No other concept of inclusion will there is always joy and learning. threads of the fabric of a community, will lead to full citizenship. It will only lead to Raffath and I firmly believe that as grow to be the future leaders and the future educators, parents and persons with parents and community members we citizens of tomorrow It will be this disabilities having the same conversations play a dual role in bringing up not only generation of leaders who will look for 50 years from today. It will continue to our children, but also raising the commu- ways to embrace the strengths and the lead two systems of education, which will nities in which we want our children to skills of all of their friends. not lead to an inclusive society. live. Our communities need leaders with The challenge to us, who will take Nothing would have changed. vision, with understanding that messages from TASH to the world, is to Nothing would have harnessed the everyone's contributions are vital to find ways as educators, parents and energy and the conviction in this room healthy, peaceful countries. I realized a advocates to assist the education system today and in many such rooms around few years ago as I engaged in conversa- to take advantage of being poised for the world. The time is right. The time is tions and discussions in hockey rinks and making real change in the future. You, now Let us put aside our own tradi- on soccer fields, and in the course of who are enlightened, know that educational notions about the worth of people parent volunteering in schools and at tion is the key to break the cycle of and let us give our children a chance. community events, that the community marginalization and discrimination. They will prove to us that true inclusion at large is us all of us. We hold the Education by its very nature has the of persons with developmental disabili- key to inclusion and welcoming our sons, potential to improve the social and ties will create futures together. A future daughters, students or friends. That it is economic status of individuals with that holds a promise of equality and our responsibility to create an environ- disabilities. Those who now possess the citizenship, remembering that the rights ment where abilities and strengths matter. skills are in the position to make changes of man come not from the generosity of We must work to create an environ- that improve socio-economic status the state, but from the hand of God. ment that says the accommodations of which lessens marginalization. the past have been limited to surface It is the responsibility of the educa- adjustments. That nothing will change if tion system and the community at large we continue to focus on the limitations of to change true attitudinal prejudice. All It is the responsibility persons with a disability instead of the the change agents are in place. It is of the education system limitations within our communities, evident at this gathering. The ideas and systems, laws, policies and programs. strategies shared here speak to real and the community at Instead of continuing to segregate and inclusion- as is the belief and the com- large to change true isolate persons with disabilities, we mitment to the inherent potential that is attitudinal prejudice. should be engaged in work that benefits in us all. It is the education system that All the change agents are all people in our communities. guides our learning and should emulate in place. It is evident Including people with disabilities has the role models provided by children. It taught us valuable lessons. It has also is our role as citizens to foster a civil at this gathering. made us, as citizens, realize that it is only society that will be good for us all; one The ideas and strategies a matter of time before we, too, will have that is truly inclusive of all the abilities shared here speak to the need for warm, welcoming, accessible and strengths of all people. There is so real inclusion. and inclusive communities. much work to do. We know that the human race is All over the world, the potential of per- glorious in its diversity. That our chil- sons with disabilities is being realized, and BEST COPY AVAILABLE PAGE 14 16 TASH Newsletter, Jan./Feb. 1999 Call for Presentations

International TASH Conference December 8-11, 1999 (Pre-Conference Workshops & Opening Reception on December 8th)

TASH is an international advocacy association of people with disabilities, their family members, community members, other advocates, and people who work in the disability field. Our members are fighting for a society in which inclusion of all people in all aspects of society is the norm. We are an organization of members concerned with equity, diversity, social justice, human rights, and inclusion for all. Send the Original and 3 copies of the Application and Abstract (postmarked) by March 22, 1999 to: Kelly Nelson, TASH , 29 West Susquehanna Avenue, Suite 210, Baltimore, MD 21204 Questions? Phone: 410-828-8274 4, TDD 410-828-1306 Website: http://www.tash.org Sorry, faxed or e-mailed copies cannot be accepted

1999 Priority Topics Proposals may be submitted on any topic that relates to the inclusion of people with disabilities. The 1999 Conference Committee has identified particular interest in the sub-topic areas listed below:

Advocacy High School Inclusion Multicultural Issues Building Alliances and Coalitions Housing /Home of Your Own Paraprofessional Issues Community Living IDEA Monitoring and Enforcement Personnel Preparation *Creative and Performing Arts IDEA '97 Regulations Positive Approaches to Behavior Change Communication Impacting Legislation Qualitative & Quantitative Research Criminal Justice Inclusive Education Strategies Rare Syndromes Curriculum Adaptation Independent Living Centers, Rehab Act Deaf Culture Councils, or Services Related Services in Inclusive Education Dual Sensory Impairment Integrated Sports Self-Advocacy Early Childhood Internet and Disability Self-Determination Educational Reform Issues of Death and Dying Special Health Care in Inclusive Settings Employment and Careers Issues of World Peace & Social Sexuality, Romance, & Dating Family Issues Change Spirituality Functional Assessment for Leisure and Recreation Teacher Preparation Behavior Change Life Transitions & Changes in Transition from School to Work Governmental Affairs Supports for Aging Adults Special Health Care Needs Grassroots Organizing Managed Care Students Who Severely Challenge Schools Guardianship Management Issues Systems Change at the Local Level Higher Education Mediation Systems Change at the Policy Level International Inclusion MiCASA/Personal Assistance Urban Education Issues * Please note: TASH will not be able to provide staging, lighting, etc. in session rooms. PAGE 1 7 TASH Newsletter,Jan./Feb. 1999 Gall fop' Pp'eservl-a-l-ions 1999 TAS-I-1 Cofe.v.ence Of-hicago Guidelines for Submission

1) TASH encourages presentations that are made through partnerships. Panels are also encouraged to represent multicultural, under-served, and varying socioeconomic viewpoints. Presentations for consideration in the the Com- munity Living Strand will require participation of self-advocates and/or family members for acceptance. 2) An abstract must be sent along with the completed application, postmarked by March 22, 1999. 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. 3) Proposal content must reflect the values and resolutions of TASH. TASH is dedicated to disseminating information that reflects both the ideals and the pragmatic realities of pursuing the goals of equity, social justice, diversity, and full community participation for people with disabilities. The proposal title, description, and all content of presentations must use "people first" language, and must relate to supports or issues that are community-based. 4) Please limit the abstract to 300-600 words (1 - 1 1/2 pages). Do not send any other materials. You may submit the information on the application form or in alternate format, as long as all of the information requested is included. The form is available to download from TASH's web page: www.tash.org. 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. 5) Please complete all sections of the form: coordinator information, session description, and contact information for co-presenters. TASH encourages you to include a variety of co-presenters in your sessions. Please include presenters who are reasonably certain of attending. Copy the co-presenter form if necessary. 6) In requesting the session format, please keep in mind that 1 hour and 2 1/4 hour presentations are reserved for interactive workshops with an audience. Poster sessions are table top "exhibits" that allow personalized opportunity for discussion. These sessions are highly interactive and valuable. 7) All presenters are required to pay conference registration fees. TASH relies soley on membership and conference registration to be an effective advocacy organization. We strongly encourage presenters to be TASH members. TASH members, self-advocates, parents, and family members are eligible to register at a reduced rate. 8) 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) exent 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. 9) A basic package of audiovisual equipment will be available in all session rooms at no charge to presenters this year. This package includes an overhead projector and an 8x8 screen. If you require additional equipment (such as a slide projector, flipchart or markers, or TV/VCR), you may rent the equipment for the specified cost. Order forms for audiovisual equipment will be sent with acceptance letters. 10) At times letters of acceptance get lost, or go to an incorrect address. Letters indicating if proposals have been accepted are sent in August. 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 accepted or not accepted. It is the responsibility of the session coordinator to notify co-presenters of acceptance. 11) If accepted, you may not receive the session time frame or format you requested. Session assignments are based on the recommendations of reviewers, with final approval by the conference committee. Your session may be accepted as part of an In-focus Strand or as part of a general listing of sessions. The specific session room will be scheduled closer to the date of the conference. 12) All presenters are required to make the material for their session available in alternate format. Information on accessible formatting will be provided with letters of acceptance. 13) A selection of conference sessions will be audiotaped. This will allow sessions to be available in an alternate format to those who request tapes of session, or to be available electronically (when paying a registration fee) or for sale post-conference. Please be sure to indicate on the application if you agree to be considered to participate in having your session taped.

- The 1999 TASH Call for Presentations is available in alternate format upon request.

PAGE 16 18 TASH Newsletter, Jan./Feb. 1999 Call fora Presentations 1999 TA51-1 Collfep.ence. OfIllicaso

1999 TASH Conference Presentation Application Date Received: (p /ease be sure a one page abstract is attached to this form) Session Code:

SESSION COORDINATOR (I person only): Please list below the address which you would like in the conference program:

ORGANIZATION :

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL:

The above address is: HOME El WORK OTHER

Please send my letter which indicates acceptance status to:

Same as Above (skip the next session if checked) Use Different Address (please list below)

ORGANIZATION :

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX:

The above address is: HOME WORK OTHER If accepted, I agree to allow this session to be taped. Session Information (See Guidelines for Submission). If accepted I Do Not want this session to be taped. SESSION TITLE(please do not exceed 10 words): Signature

Please type a description of your presentation in 40 words or less. This description will be reprinted in the final Conference Program if accepted. TASH reserves the right to edit descriptions. Please include information on content and format of session.

Requested Session Type: ADVOCACY LEISURE AND RECREATION AGING MANAGEMENT ISSUES (Please check only one) ASSISTIVE TECHNOLOGY MULTICULTURAL/INTERNATIONAL CREATIVE/PERFORMING ARTS PARAPROFESSIONAL 1 HOUR SESSION COMMUNICATION PERSONNEL PREPARATION 2 HOUR & 15 MINUTE SESSION COMMUNITY LIVING/HOUSING POSITIVE APPROACHES POSTER SESSION CRIMINAL JUSTICE RELATED SERVICES TASH TECH INCLUSIVE EDUCATION RESEARCH (Pre-Conference Workshops) INDEPENDENT LIVING SELF-DETERMINATION EARLY CHILDHOOD SPECIAL HEALTH CARE NEEDS EMPLOYMENT AND CAREERS SPIRITUALITY Applicable Interest Area ETHICS/RIGHTS SEXUALITY/ SEXUAL EXPRESSION FAMILY STUDENTS WHO SEVERELY (This category determines which committee GOVERNMENTAL AFFAIRS CHALLENGE SCHOOLS reviews your proposal. Please pick only one) HIGHER EDUCATION O TRANSITION 0 URBAN ISSUES

4t, PAGE 17 19 TASH Newsletter, Jan./Feb. 1999 Call foe Peesentafions 401999 'CASH CortfeeevAce @Chicago Co-Presenter Information

NAME :

ORGANIZATION :

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL:

The above address is: HOME WORK OTHER

'EST

NAME:

ORGANIZATION :

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL:

The above address is: 1:71 HOME WORK OTHER

fi0 NAME:

ORGANIZATION

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL:

The above address is: HOME WORK OTHER

NAME:

ORGANIZATION:

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX:

The above address is: HOME WORK OTHER Thank you for your interest in presenting at the 1999 International TASH Conference

Copy this page for additional presenters. Pass a copy of the entire application to a friend or colleague!

PAGE 18 20TASH Newsletter, Jan./Feb. 1999 JANUARY/FEBRUARY 1999

Director of Supported Employment Personalized Day Supports

Jay Nolan Community Services is looking to hire an outstanding leader in the field of developmental disabilities to join our team. Our commitment is providing state of the art supports to people with autism and others who may need positive behavioral supports in order to work and lead interesting and valued lives in the community. The ideal candidate will have a strong value base in the field of supported employment and personalized day supports. Position requires work history of individualized placements, entrepreneurial endeavors, knowledge of person- centered planning and circles of support. Must share our commitment to excellence, to listening to people with developmental disabilities, and to creating a team atmosphere. Salary range: $45-55K. Excellent benefit package. Please send resume to:

Jopie Smith, Assistant Executive Director raw Jay Nolan Community Services kyy 15501 San Fernando Mission Blvd., Suite 200 Mission Hills, CA 91345 Fax: 818/365-0522; e-mail: [email protected]

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Innovations Invitation for Submissions

ABOUT THE SERIES Innovations is a publication of the American Association on Mental Retardation that brings research to practice. Designed for busy practitioners, Innovations translates research findings into clear, usable ideas. Each issue is devoted to one topic. Recent issues have included:

Teaching Students in Inclusive Settings by MaryAnn Demchak Teaching Self-Management to Elementary Students by King-Sears & Carpenter Designing Positive Behavioral Support Plans by Bambara & Knoster Increasing Variety in Adult Life by Daniel Steere

CALL FOR CONTRIBUTORS Submissions of proposals for the 1999 series are invited. Potential contributors are requested to prepare a 2-3 page proposal, including a description of the topic and its importance, an outline of the content and references. If a proposal is accepted, a full manuscript will be invited for review. The deadline for the next round of review is May 1, 1999. Mail 15 copies of the proposal to Diane Browder, Editor of Innovations, Department of Counseling, Special Education, and Child Development, University of North Carolina at Char- lotte, 9201 University City Boulevard, Charlotte, NC 28223-0001.

TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLEPAGE 19 1998 TASH CONFERENCE

We welcomed several new exhibitors to the 1998 conference and we hope they enjoyed being a part of the TASH event as much as we enjoyed having them. We also take this opportunity to salute those exhibitors we have had the pleasure to work with over the years. Your loyalty and support is greatly appreciated. Thanks to all of the individuals and companies that helped to make the 1998 conference a success! We look forward to welcoming you back with us in Chicago in December! 1998 Conference Exhibitors

Abingdon Press Inclusion Press International National Professional Resources, Inc. Trips, Inc. AFB Press Institute on Disability/UAP, University Neuro-Developmental Treatment Tuesday's Child Magazine Aurora Ministries Bible Alliance of New Hampshire Association United Cerebral Palsy Association of King Ben Lehr & Company International Rett Syndrome Association Next Generation Technologies, Inc. & Sonomish Counties Bridge Ministries for Disability Concerns King County Metro The Nth Degree University of San Francisco/McLaren Brookes Publishing Company Laureate Learning Systems, Inc. PDLX Company, Inc. School of Business EMMDS Dakota Communities for All Made by Mom Creations Peak Parent Center Program Diverse City Press Magic Wand Solutions People First of Anchorage Visions for Independent Living, Inc. DO-It (Disabilities, Opportunities, Mariah Management People First of Washington Washington Angelman Syndrome Internetworking and Technology) Mariposa Productions Project RSVP Birch & Davis Foundation Dorling Kindersley Family Learning Moving Solutions, Inc. Roots & Wings Washington State Division of DynaVox Systems, Inc. National Association for the Dually Self-Advocates Becoming Empowered Developmental Disabilities Eastern Washington University School of Diagnosed (NADD) Singular Publishing Group, Inc. William M. Mercer, Inc. Social Work National Library Service BPH, Library of Special Needs Project World Congress on Intellectual Gary Lamb Music Congress The Council on Quality and Leadership Disabilities Gray Line of Seattle ,MairetC.

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PAGE 20 TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLE 22 1998 CONFERENCE KEYNOTE

It is really great to be KEYNOTE EMARKS: day, in every classroom, in every school, in here. Its great to every district. look around and see Another form of disappearance of so many diverse people with disabilities is nursing homes and individuals doing really other institutions. These institutions "dis- important work in such LA appear" people of all ages who happen to diverse ways. It's need some kind of support and assistance experiences like this one in order to survive. This is wrong. I think that make me really we have to say, always, that it's wrong at any happy to be a part of the disability HERSHEY age.Institutionalization is wrong for our community and to be part of a movement children; it's wrong for ourselves and our which is actually a lot of little movements. not be heard from, or where they can not brothers and sisters. Its also wrong for our [The movements are] a lot of efforts that be embraced or protected by the commu- parents and our grandparents and it has to sometimes are in conflict with each other, nity.Isolated and invisible, these people stop.The resistance movement is being sometimes go in different directions, have been subject to the whims and actions spearheaded by ADAPT and the battle for sometimes agree, sometimes don't. But it's of people who have power over them. MiCASA. We need to all join that battle. all great because all of you, all of us, are They've been, in effect, held prisoner and We need to [alleviate] the option to lock working in the ways that make the most stripped of any power of their own. They've people up when they get old and need help sense to each person to make this world a been disappeared, but it's often harder, even or when they are young and need help. better and more just place for people with for us, to organize around opposing that Another form of disappearance which disabilities. because there is no single dictator that we is really insidious and hard to see, is the I started thinking a lot recently after the can point to who has mandated or orches- move to cut federal safety-net programs. arrest of General Pinochet.That event has trated these atrocities. Every time I visit Washington, DC I hear kind of raised hopes for human rights advo- These disappearances have happened more and more about this.I think it's still cates all around the world. People are wait- in our democratic country. Things like a little bit behind the scenes, but it's some- ing and watching to see whether the inter- that are not supposed to happen here, but thing that is a grave danger.Right-wing national legal systems will finally bring this they do. They have happened throughout forces in the Congress are threatening to man to justice. If you don't know, Pinochet history, and are continuing to happen. strip away some of the basic benefits that is the former Chilean dictator who was re- They're still happening. we assume are going to be there to provide sponsible for a lot of terrible crimes against The good news is that there are a lot support to the poorest of the poor in our his own people. Under the Pinochet gov- of resistance movements. Just like the communities. These cuts threaten to "dis- ernment, which was supported financially human rights activists in Latin America appear" millions of Americans into poverty and militarily by the United States, tens of fighting against the disappearance of their and homelessness. As Ghandi said, "Pov- thousands of Chilean activists and other loved ones, we, the disability rights erty is a form of violence." people disappeared. He "disappeared" them. movement, are the resistance movement, These cuts are also accompanied by the The grammar here is intentional.These fighting against the disappearances of our lie that annihilating these programs and these people, they disappeared went missing. loved ones, many of whom we don't even people will save money for the taxpayers. But they didn't just disappear. They were know But we are committed to them. This isn't true. This money will be trans- disappeared. They were deliberately and I'm just going to talk about a few of the ferred to corporate subsidies, military pro- forcibly made to vanishinto hidden places ways that people with disabilities in this curement, and other programs that benefit and unknown fates. Fates that usually in- country are disappeared; and a few of the the rich.If you want to learn more about cluded imprisonment, torture, and/or mur- ways that people with disabilities and our that, I would like to recommend a book. I der. These atrocities occurred in secret, out allies are fighting against that. Segregated, learned from the speaker yesterday, it's a good of public view, so that accountability was im- so-called "special" schools and self- idea to give a reading list.There's a book possible, so that knowledge could be denied, contained clacsroorns "disappear" our called Beyond Ramps: Disability at the End of and so that even outrage was butted.It's children with disabilitiesdepriving them the Social Contract by Marta Russell, and it hard to sustain anger or incite protests over of a place in society, and depriving society should be required reading for everyone. It's crimes that you can not see. of them. But organizations like TASH, like published by Common Courage Press. I bring this up for a reason.I really PEAK Parent Center in Colorado, and Please ask your local bookstore to order it. see a parallel between "the disappeared" many, many others, are fighting back It's a fantastic book; and it's another example political prisoners of Latin America and against the disappearance of children with of the resistance movement and the fighting untold numbers of people with disabili- disabilities from our schools. It's a battle we back against the disappearances of our very ties in our own country. In so many dif- haven't won yet.It's one that must continue poor brothers and sisters with disabilities, ferent ways, masses of our people have for a long time. We are fighting it hard in many of whom are truly are on the verge of been disappeared, too. They have been the legislative arena with Congress, with the homelessness. Some of them are already removed from view, sent away to places recent battles over the reauthorization of there, and many more will be if these politi- where they can not be seen, or they can IDEA. We also must fight it every single Continued on page 22 BEST COPY AVAILABLE PAGE 21 2.3 TASH Newsletter, Jan./Feb. 1999 1998 CONFERENCE KEYNOTE

Laura Hershey disabilities. Every time we accept the as- at all. Rosa Parks was a dedicated activist Continued from page 21 sumption that professionals or parents or and part of a strong tradition and orga- anybody else can represent people with nized movement for civil rights.I think cal movements succeed. disabilities' interests better than we rep- the reason we've been taught these myths Another form of the disappearance of resent ourselves, we allow important in schools and elsewhere, is that it's sort of people with disabilities has already been men- voices to be silenced. We allow potentially this divide and conquer mentality. The tioned a couple of times today. It is the move powerful self-advocates to be disappeared. powers that be want us to think that we to legalize assisted suicide. This movement I'm definitely all for working with family should try to do everything ourselves, comes as part of a broader movement to "dis- members, friends, service providers, and alone, as individuals. In fact it is collective appear" people with disabilities. As profit- other genuine allies, but I think it's really action that really makes collective change, driven corporations increasingly monopolize important that we learn to recognize when and social change. I saw a great bumper health care dollars, both public and private, the power imbalances that are out there in sticker recently. You've all seen the those with expensive and ongoing conditions society are mirrored within our own organi- bumper stickers that say, "Practice random are seen as a drain on society, or on the cor- zations. We need to learn to challenge these kindness and senseless acts of beauty" porate coffers, and are targeted for elimina- imbalances in our own organization. Well this bumper sticker was sort of a tion. And what better way to do this than Groups like People First and Self-Ad- rebuttal to that.It said, "Practice planned through assisted suicide through the le- vocates Becoming Empowered and other resistance and organized acts of rebellion." galization and the funding of assisted suicide. parts of the self-advocacy movement really I like that. So by all means, express This practice, which should evoke outrage are the resistance to this kind of disappear- yourselves individually; express your from liberals and progressives, and certainly ance. They've done a tremendous amount own creativity and your own ideas. from advocates of economic justice and hu- of organizing and education among their That will give strength to the move- man rights, is instead gaining acceptance own communities so that they can begin to ment. But collective actionthe strong among these groups. I think that's because of take on the leadership roles within these or- organized action of all those dynamic, two reasons: one, because the practice is re- ganizations and within the movement. I creative individualswill multiply our served exclusively for the most devalued would strongly encourage all disability or- power more in untold ways. groups in societythe sick and the disabled. ganizations, including TASH, to strive not I wrote [a poem] over five years ago Two, it is covered over with a thin deceptive just to have a few people with disabilities on now It was a poem that was inspired by a veneer of voluntariness. Many people accept the Board of Directors and other governing conversation with a woman with a this liethat it is about choice. To see the bodies, but have a majority of people with disability. She happened to see a video reality of [what is actually happening] you disabilities. that was made by a group in Oregon. I needn't look any further than the state neigh- So we can see from these examples, don't remember who, but if any of you boring this oneOregon. there's a strong and dynamic movement of were involved in it you can be really In Oregon, the state Medicaid system people with disabilities. Lots of move- pleased with yourselves because this has recently discontinued paying for some ments. It needs to keep growing. It needs woman said, after seeing the video, "This pain medicines which are essential for the to keep going on. I think the keys to is the first time, since I have been disabled, quality of life of people with certain resistance and continuing the movement that I have felt proud." I felt really sad disabilities, such as MS. Yet, that state are visibility, collective action, and pride. when she said that because, talk about a Medicaid system will happily pay to end Visibility is about not being willing to take civil right, a human right. That's some- the life a disabled person driven mad by a back seat, and not being willing to be thing that everybody should have a right untreated pain. The good news is there is "disappeared." For example, when Not to.I started asking myself why this a resistance movement against [assisted Dead Yet! does a protest, we're doing more happens. I started recognizing it happens suicide] too. We all know what that is than just arguing a point about assisted in all of us. Not just someone who's never it's Not Dead Yet!I really encourage you suicide. We're actually, by our physical been proud, but there's all kinds of forces to visit the Not Dead Yet! booth down in presence at those forums, we're refusing to that would make us doubt ourselves. the exhibit area. And please, if you're be gone. We're refusing to be abolished. So I wrote this poem. I've read it uncertain about the issue, or you think The second key is collective action. probably more than any of my other you agree with Dr. Kevorkian or with any This is really an important one.I think in poems. And I've read it to groups of of the pro-assisted suicide movements, our country oftentimes we're taught it's people with disabilities. I've read at gay stop by the booth and just read. There's a only the individual that matters. Remem- and lesbian pride marches. I've read it for lot of material there that you can read, and ber one speaker yesterday was talking incest survivors. I've read it for high if you educate yourselves, you may start to about the myths that have grown up school groups. And everybody has their look at things differently. around Rosa Parks. We've been taught own response to it.I've learned so much Another type of disappearance, perhaps that she was sort of a tired person who by reading this poem to groups about the less lethal, but nevertheless important for the happened to be on a bus one day and just kinds of challenges that we all face, and long-term gains of our community, is that didn't feel like getting up and going to the that threaten to divide, but actually should even the disability advocacy community has, back of the bus, so she refused. As the unify all of us. at different times, disappeared people with speaker pointed out, that was not the case Continued on page 23

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Laura Hershey Continued from page 22 1998 TASH The poem is called: "You Get Proud By Practicing."

If you are not proud for who you are or what you say, for how you look, ANNUAL If every time you stop to think of yourself, you do not see yourself glowing with golden light Do not, therefore, give up on yourself. CONFERENCE You can get proud. You do not need a better body, a purer spirit, or a Ph.D. to be proud. TASH gratefully acknowledges You do not need a lot of money, a handsome boyfriend, or a nice car. the assistance, support and You do not need to be able to walk, or see, or hear, or use big complicated words generosity of the following Or do any of the things that you just can't do to be proud. A case worker can not make you proud, or a doctor. participating organizations: You only need more practice. GrayLine Convention Services You get proud by practicing. King County Metro There are many, many ways to get proud. Newman's Own You can try riding a horse, or skiing on one leg, or playing a guitar Paul H. Brookes Publishing Co. And do well, or not so well Pepsi Cola Company And be glad you tried either way You can show something you've made to someone you respect Seattle Chamber of Commerce And be happy with it, no matter what they say Seattle-King County Convention You can say what you think though you know other people do not think the same way and Visitors Bureau And you can keep saying it, even if they tell you you are crazy. UCP of Snohomish and King Counties You can add your voice all night to the voices of a hundred and fifty others William M. Mercer Company In a circle around a jailhouse where your brothers and sisters are being held For blocking buses with no lifts; and Or you can be one of the ones inside the jailhouse, knowing of the circle outside. You can speak your love to a friend without fear. Many Thanks to the following You can find someone who will listen to you, without judging you, or doubting you or being afraid donors who made the of you Door Prize Drawings And let you hear yourself, perhaps for the first time. in the Exhibit Hall possible: Black & Decker These are all ways of getting proud. Brookes Publishing Company None of them are easy, but all of them are possible. Café Wolfgang Puck You can do all of these things, or just one of them again and again. You get proud by practicing. Columbia Winery The Council on Quality and Leadership Power makes you proud, and power comes in many fine forms DO-IT Program Simple and rich as butterfly wings. Gary Lamb Music It is music when you practice opening your mouth and liking what you hear, GrayLine Convention Services Because it is the sound of your own true voice. Made by Moms Creations It is sunlight when you practice seeing strength and beauty in everyone, including yourself. Magic Wand Solutions It is dance when you practice knowing that what you do, and the way you do it, is the right way for you, Mariah Management And can't be called wrong. Metropolitan Grill People First of Anchorage All these hold more power than weapons, or money, or lives. Martha and Bob Perske All these practices bring power, and power makes you proud. You get proud by practicing. Port Chatham Smoked Seafoods Redhook Brewery Remember, you weren't the one who made you ashamed, but you are the one who can make you proud. Seattle Seahawks Just practice. Practice until you get proud. See's Candies And once you are proud, keep practicing so you won't forget. Southwest Airlines You get proud by practicing. Univ. of San Francisco/McLaren School of Business-EMMDS Program Laura is a disability rights leader, poet, writer and trainer. She educates and agitates Unexpected Productions whenever possible to promote the rights of people with disabilities. She has organized social Visions for Independent Living change campaigns and events around issues such as Social Security work disincentives, economic justice, and disabled women's leadership development. Laura lives in Denver, Colorado with her partner, Robin Stephens, and their dog and cat. Our thanks to all of the Posters of Laura's poem, "You Get Proud By Practicing," are available for $10 (includes 1998 Conference shipping) and can be ordered directly from Laura Hershey, PO. Box 9004, Denver, CO 80209. Also, check out Laura's poetry audiotapes at htt p:// ourworld .compuserve.com /homepages/ Volunteers - LauraHershey/orderhtrn we couldn't have done it without you! "4' BEST COPY AVAILABLE PAGE 23 2.5 TASH Newsletter, Jan./Feb. 1999 JANUARY/FEBRUARY 1999

CENTER Moving On: May 3 & 4, 1999 FOR Pre-Conference Day COMMUNITY Supporting the Use INCLUSION May 2, 1999 UNIVERSITY ff11.141:11 ROGIIAM, of Facilitated .N1IVERSITY :OF MAINE.. -444e'i:Certtei for rnlerdisciplinwy Education, Communication The Radisson Eastland Hotel ditil Public Service .: inDisoJnluy Studies in the 21st Century Portland, Maine

CORiErr Three Concurrent Strands: ORONO, ME' 04469-5717 Supporting FC in School, at Home, and Work 5)ICE: (267)581-10 Support and Training of Facilitators Research 207)581423 Monday Keynote Tuesday Keynote Douglas Bilden Larry Bissonette, Ben Rossignol, 207)581-13, and Heather Rossignol

ON THE WEB: For more information, or to register, contact Nancy Boyington by phone, fax, wwwumEmA'NEEDuCCil 'or by email at [email protected]

FREE! Disability Resource Catalog TASH wishes to acknowledge VIDEOS SOFTWARE CD-ROMS the generous support of our NEW 1999 Catalog lists over 100 resources newest lifetime member for staff development and skills training for people with disabilities. Includes award winning videos, software, books and board Phil Ferguson games on employment, inclusion, transition, Lifetime membership entitles you to advocacy, disability awareness, sex ed., full international and chapter member benefits friendmaking, and more. for your lifetime. The cost can be remitted over Write PDA TASH Free Catalog, several monthly payments. If you are interested in P.O. Box 2038, Syracuse, NY 13220-2038 becoming a lifetime member of TASH, or call 800-543-2119. contact Rose Holsey at 410-828-8274, ext. 100. Visit Our All New Updated Web Site @ WWW. PDASSOC.COM

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The following article is reprinted with permission demanding than those taught to students of Poverty & Race Research Action Council, in general; and lesser outcomes (student September/October 1998, Vol. 7, No. 5. PRRAC is located at 1711 Connecticut Avenue, N.W, Over- learning, dropout rates, graduation rates, Washington, D.C. 20009, (Phone) 202/387-9887; postsecondary education and employ- (e-mail) [email protected] ment, living in the community). Representation The special education system first Some 5.1 million students, ages 6- disproportionately identifies Black and 21, in the nation's public schools of Black poor youth as "losers," and then pro- are identified as "disabled" and are motes their failure in a separate special served in programs or services called Students in education system. "special education." While such programs have been in place in one or What Should Be Done? another public school system since the Special These are not issues of recent date. mid-19th century, only in 1975, with A quarter of a century ago, as Congress passage of P L. 94-142 ("The Education Education: considered what became P. L. 94-142, the for All Handicapped Children Act"), were over-representation of Black students was all students with disabilities guaranteed a Problemor recognized as a problem. Court suits free appropriate public education. found over-representation, and in In the 20 years since P.L. 94-142 has California barred the use of IQ tests for been fully implemented, the number of stu- Symptom? identifying students with mental retarda- dents served has increased by more than tion.P.L. 94-142 itself required the use 1.5 million.They now comprise nearly of non-discriminatory screening instru- 11% of public school students. While the With the first Newsletter of 1999, ments. Yet the problem continues. law identifies 13 disability conditions, 91% we are introducing a regular feature called "The Education Indeed, in the 1997 reauthorized law, P.L. of the students fall into one of four catego- Corner." Articles that appear in 105-17, "Individuals with Disabilities ries: specific learning disabilities (51.2%), this section are designed to Education Act" (IDEA), there are new speech or language impairments (20.2%), inform and enlighten on a provisions requiring a determination by mental retardation (11.5 %) or serious emo- number of education-related each state as to whether significant racial tional disturbance (8.6%). topics including: evaluation and assessments;inclusionof disparities exist in the identification, Of great concern is the fact that Black students with disabilities in placement, suspension and expulsion of students are significantly overrepresented content areas; enforcement of students with disabilities. When dispari- in the Mentally Retarded (MR) and IDEA; standards and best ties do exist (and Department of Educa- Severely Emotionally Disturbed (SED) practices; and many other tion data indicate wide variances in state topics. categories. U.S. Department of Education practices: for example, in five states more Office of Civil Rights (OCR) data indicate If you would like to submit an than a third of Black special education that in 1994 Black students comprised article for consideration, send it students are classified as mentally 17% of the overall public school popula- via e-mail to [email protected] retarded, while in five other states fewer tion. However, Blacks represented 25% of than a tenth are so labeled), states must students labeled MR and 31% of students develop remedial plans. labeled SED. (Among Hispanic students, aremost over-represented. Additionally, is- A 1998 conference convened by the there is under-representation within these sues of racial segregation are raised, as most National Center on Educational Restruc- same categories: Hispanic students special education classes are separate from turing and Inclusion (NCERI) brought comprised 17% of the overall student regular clacses and those categories where together educators (both general and population, but only 8% of those labeled Blacks are over-represented are most likely special education), civil rights and MR and 8% of those labeled SED. Asian to wind up in separate classes. While 55 % disability rights advocates to address American/Pacific Islander students of the students in special education programs these racial disparities in education and similarly were under-represented in these in the 1994-95 school year were placed in identify strategies for change. Recom- two disability categories. Underrepresen- other than regular classes (itself a profoundly mendations addressed three sets of issues: tation presents a different set of problems disturbing matter), 91% of the students la- 1. Implementing the new federal data that must be faced.) beled MR and 88% of the students labeled collection requirements; 2. Direct and This raises serious questions about SED were placed outside of regular classes. immediate steps to address over-repre- misidentification, misclassification or inap- Not only are Black students segre- sentation; and 3. Systemic changes. propriate placement in special education gated from the general education popula- programs and classes. There is both stigma tion in self-contained special education 1. Implementing the new federal and penalty that may attach to this label- classes, substantial research indicates that data collection requirements ing and categorization, all the greater for these are classrooms characterized by While the federal government has just those categories where Black students lower expectations; curricula that are less Continued on page 26

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Over-Representation of Black The system that is used to determine achieved when there are "high expecta- Students in Special Education whether a student is disabled and in need tions" for students with disabilities. These Continued from page 25 of special education services relies heavily expectations are in terms of the regular (not upon standardized tests, particularly so- some special) curriculum: had responsibility and authority (under called intelligence tests. Such tests not that the education of students with Section 504 of the Rehabilitation Act of only implicate racial and ethnic discrimi- disabilities in the same classroom as 1973, Title II of the Americans with nation; they are based on an erroneous their nondisabled peers is to be the Disabilities Act and Title VI of the Civil understanding of intelligence, as a fixed norm and exclusion from such settings Rights Act of 1964) to address issues of and largely heritable characteristic, that must be particularly justified; disproportionate identification, classifica- can be precisely measured and provide an that such education must provide stu- tion and placement, the provisions of the accurate predictor as to one's future dents with disabilities the necessary reauthorized IDEA give added authority success in school and life. Thus, the first supplemental aids and support ser- and impetus to address these issues. But immediate step must address the inad- vices to enable them to succeed in the to do so, the federal government, equacies of the referral and assessment general education environment; and particularly OCR and the Office of Special process, as well as the inappropriate tests. that the expected outcomes for students Education Programs, needs to require data (In the right direction is the development with disabilities must be drawn from from state education departments disag- of a Test Resource Guide by the New the outcomes a state expects for stu- gregated by disability category and size of York City Public Schools, which identifies dents in general and that measures of school district, as well as assure that data the appropriateness of tests for particular these outcomes must be incorporated give an accurate picture of student groups and purposes.) in school and district public reports. placement. For example, in its current The National Association of State data collection, the Department of Directors of Special Education has been Fundamental, then, is the develop- Education categorizes as a placement in addressing the issue of racial disparity for ment of a unitary school system, one "regular classes" students who spend as many years. A report from its Project where all students learn and succeed much as 20% of their time outside of such FORUM identified eight sets of activities together. Currently, students who come classes, i.e., in a more restricted place- to address these issues. They include: to special education are those whom the ment. Further, each state should be Creating a successful educational general education system has failed. required to identify the local school environment for all students; They bring this history of failure, and its districts at the extremesthat is, by race, Pre-referral problem-solving in the concomitant depreciations of self and low the greatest and smallest percentage of general education arena; expectations for success. In a refashioned students classified as disabled, served in Referral for special education services; mainstream, students do not need to be inclusive settings, graduated and sus- Assessment of Students in terms of removed to gain the resources needed for pended. Better data collection and disability condition(s); success. While we may look to the day rigorous enforcement are obligations of Eligibility for special education services; when labeling is no longer necessary in both the federal and state agencies. Provision of special education services; order to gain needed services for students Home-school-community interac- - whether they have disabilities or not - a 2. Direct and immediate steps to tion; and restructured school system where all address over-representation Staff development, recruitment and students are educated well and together is As Patricia Kirkpatrick pointed out retention. achievable in the context of the current in her May/June 1994 P&R article, "Triple law As the late Ron Edmonds, who Jeopardy: Disability, Race & Poverty in 3. Systemic changes conducted the pioneer research on school America," while mental retardation can Two features of the reauthorized effectiveness stated, "The essential problem be caused by poverty conditions, "the IDEA, if implemented, offer the means comes from the structure and attitudes of greater number of black children in for fundamental change. First, the law those in public education today who special education cannot be explained (indeed, this has been the case since simply are not overly concerned as to solely by socioeconomic factors." The 1975) requires that school districts whether minority kids learn." inability of schools to successfully implement "best practices" in student assessment and instruction. Were this Alan Gartner is a professor at The Graduate educate African-American students, School and University Center, The City especially males, is especially significant done - and the federal government has University of New Yorh where Dorothy in special education. James Ysseldyke, a the authority to see that it is done - the Kerzner Lipsky directs the National Center leading expert on referral and assessment, current discriminatory assessment on Educational Restructuring and Inclusion. procedure would be ended, as would the Their most recent book is Inclusive Education stated in a 1993 NY Times article, and School Restructuring (Brookes, 1997). "Studies show teachers refer kids who inadequate instruction provided to They can be reached at NCERI, CUNY Grad. bother them, and we've been able to students with disabilities. Center, 33 W. 42 Street, New York City, NY demonstrate that specifically African Second, the reauthorized IDEA focuses 10036, 212/642-2656. American males demonstrate behavior attention on outcomes for students. It as- that bothers teachers." serts that significant outcomes can be (4 PAGE 26 TASH Newsletter, Jan./Feb. 1999 BEST COPY AVAILABLE 28 1998 INCLUSION ROUNDTABLE

INCLUSION ROUNDTABLE You speak with the superintendent, reauthorization, I also confront some of Continued from page 7 you do not take no for an answer, you the problems of the ongoing reliance on keep your brief in front of you all the time. categorical labeling. The logic underlying Then you go home and you cry and/or IDEA undermines some of the logic we are Rich Villa talk with a friend. Nonetheless, you keep trying to talk about around inclusive If you think of a person and their going. Parents sometimes are really educational practices. objection, think that half of their objection intimidated by the systems and the One strand of IDEA has this con- is their concerns and half is their beliefs. professionals, but you just keep going. tinuum logic built into it. I find this You will never get a person to change their In systemic change we need all of the continuum logic real powerful. This logic belief unless they feel you have heard the stakeholders to be involved. In any that we used with people who are concern. community that is going to move forward different, in particular people with You have to listen to that concern you are going to have to think about what disabilities, in all domains of life. We have and be sure that the kind of information are the concerns of each group of people. this menu, this array of possibilities from that you are giving them, and the vehicles You do have the community, you have the the most segregated to the most inte- we use to provide that information, administrators, the staff, the parents, the grated. Then what we will do is take the matches what that particular concern is. students. It is very necessary to think about individual and move them along this like the issue of teachers losing jobs. That the implementation plan. It should not be continuum. was a very big concern from our teachers that in September the teacher comes in and One of the assumptions of the union. In the end they realize that it is not is faced with a child in the room from a continuum logic is that intensity of that people lose their jobs, it's that court case. How ridiculous. Schools have to support is associated with how restrictive everybody's job becomes something else. get ready. The law has told us for a long and how sheltered the setting is. If we are For some people it is training, for time that there should be monitoring. talking about moving [a person] into less some people it is seeing someone else who Nonetheless, every community needs to be intensive settings, then we are automati- is doing it. For somebody else it is trying thinking about what they are doing to meet cally talking about less intensive supports. to figure out what are the incentives. What the concerns, the barriers that are going to I find that not necessarily explicitly stated, we are really asking all of these people to be there to compete with the success, and but it does underlie the problems that I do is leave a place where they feel com- how to get ready. hear from parents and professionals. We fortable and perhaps confident and go do must find a way to isolate that and to something where they feel totally uncom- Question: For years we have been told challenge that assumption. fortable and incompetent until they get a that our bids can't learn, they are not going to Some professionals see it as us asking whole new range of skills. learn, so we did not test them. We checked them to be not just incompetent, but to do that little box on the I EP that says not to test. something unprofessional. 'When I was Alan Gartner We have got to stop that. trained I was taught to teach triangle kids There are times when there is a need in the triangle rooms. There are other folks [to turn to lawsuits]. There are also times Dorothy Lipsky who are trained to teach the square kids when there is a need to state the facts. I Do you understand why the school dis- and the round kids. Now you are telling don't know every school district in the trict wants you to check that box? [School me that triangle kids and round kids country, but I do not know of a single districts'] scores are then way up. With the together? That is not only not what I was school district in which there has been a new law those scores are going to be told to do, but it is against this continuum net reduction in the number of special counted. I am still waiting for regulations to where we need to make the perfect match.' education teachers as a result of inclusion. come out so that we get some clarity about We need to work on that as well. People say, which I think is quite a how those scores are going to be counted. legitimate thing, I do not want to lose my You have to get out of the thing where par- Alan Gartner job. Nobody does. There are a set of facts ents are in IEPs and marking off [the box] I want to pick up on some things that says that doesn't happen. to choose not to have their children assessed. people said. Someone said 'It's almost a systems change.' No, it is a systems change Dorothy Lipsky Phil Ferguson and then some. It really does challenge a Parents have to get into more Dorothy and I have children with fundamental set of assumptions. This powerful positions. They have to speak similar backgrounds. We have a child also question of the assessments. As one up more. People have to run for school who is 29. lan had some similar experi- woman pointed out, we don't expect this boards, get their own degrees and get ences, as well. I will be honest with you, I child to learn, therefore, you can stay into those schools and make a differ- have mixed feelings about IDEA. My son home because tomorrow is the statewide ence. They have to vote, and come to was excluded by law from attending test. Or you can take the test but we won't school board meetings and really keep public school before 92-142 came into score it, or we will score it and we won't up the pressure on school districts to being. I certainly appreciate the guarantees count it. Well, IDEA '97 says a very say we are taxpayers and this is what and the mandates of the law. Despite the different thing about that. It says that we want and we need. possibilities that open up as a result of the Continued on page 28

BEST COPY AVAILABLE PAGE 27 29 TASH Newsletter, Jan./Feb. 1999 1998 INCLUSION ROUNDTABLE

INCLUSION ROUNDTABLE big trouble. It is the clear intent of the Get a set of phrases and say them over Continued from page 27 law that says 'Johnny, a 7-year old with and over. It helps to get them to answer this set of impairments, is not to be in the the question. Then you ask, 'Can you every state has a set of outcome standards English class with supplemental services please write it down on the paper?' They for the "real" kids. Kids with disabilities because, and [Johnny] cannot be in the probably won't do that. So that's the have to have outcome developed for them science class with supplemental services point that Dorothy is making. You have to in the context of outcomes standards for because...' Subject by subject and area stay with it. You can never say: 'They said, kids in general. Measures have to be by area is what the law requires. The law so we can't.' developed to assess those outcomes, and is not self-enforcing, but it does require the results have to be reported. They have them to put out their however faulty Mara Sapon-Shevin to be reported in two ways: logic. Also, [if they are not complying] I think one of the things that I am find out who your congressman is and seeing as someone who does a lot of 1. They have to be reported as pan of how s/he voted on IDEA. I would make teacher education work around inclusion the regular schools' public reporting. The it a personal affront to him/her that a is that it is really hard for the schools not principal who says 'I don't want to have school district is choosing to violate a bill to see that there are some structural my scores look bad in the paper, because that s/he voted for. changes that need to be made. What I that [school] down the road doesn't do would like to think is that in the best of all inclusion. I am going to look bad, well Dorothy Lipsky possible worlds, when schools go to now the school down the road has to I would go with other parents to include a kid who is very challenging, report, as well. The other thing that the [Congressional representatives'] offices and wouldn't it be nice if the schools would law says is that the reports about the kids' get the newspaper involved and keep the say: 'Thank you so much for sending us progress has to be made to parents as heat on. Isn't it a sad situation? We have Patrick. Before we had Patrick we thought frequently as it is for kids in general ed in heard from many parents that the school we were doing OK. But Patrick has really that district. The Congress could have system says we don't want to keep going illuminated for us all the places we need said 3 times a year or 17 times a year, they in this direction. As if they had a choice! improvement. Our curriculum needs could have picked an arbitrary number. They don't have a choice. They do have to work, it is not broad, it is not multilevel. But they didn't. I think they meant to send keep hearing the pressure and we have to Our pedagogy sure needs work because us a signal, which is: these are your kids, get this information back to Judy we have been doing all of this frontal treat them like you treat the rest. You do Heumann and Tom Hehir because they teaching and it sure doesn't work for [reporting] three times a year, do it three have to hear these kinds of concerns that Patrick, so maybe it doesn't work for other times. You do it weekly, do it weekly. we are hearing today. We will, of course, kids. The school climate really stinks, 2. Next point about IDEA, I think there let them know. there are other kids who don't have friends is a very different sense that challenges here, and our teachers really need more that continuum in what I call the pre- Question: I know we have the law but support, so thank you so much for sumption clause of IDEA. It says you have we need the regulations. In the absence of sending us this kid.' Not too many places to have a continuum of services, but it these regulations the schools are turning to are saying that yet. But there are some says that in the evaluation and placement their lawyers to get interpretation and places where the reality of that is exactly decision of a child with a disability, the ignoring what the state is saying. Dueling what has happened. That is where I get presumption is that he or she will be interpretation is a problem. hopeful. served in a inclusive setting with the We also never paid much attention necessary supports brought there. If the Charlene Comstock-Galagan to our curriculum because it looked like school district intends to place that child One of the things you are talking it fit, but it really didn't. One of the in other than the inclusive setting with the about in terms of keeping the heat on is things I do with teachers as an opening is necessary supports, they have to justify the questioning that continuum logic. A lot I say let's make a list of all of the differ- violation of the presumption. That is a of times I hear parents saying 'They say.' ences kids bring to the classroom. We powerful tool. I think we need to help parents get quit at about 100 differences. Then we really clear that it doesn't matter what look at the list and say what does it tell Question: How are they required to they say. It only matters what you us? It is not about disability then, is it? justify? Who makes them do that? What continue to say back. Those people who thought they had a information do they have to show? Some good responses back might be: homogenous classroom before inclusion How did you come to think that way? where are they? They had all of these Alan Gartner What evidence do you have to differences before, it is just that they were IDEA makes it a consequence of support that? allowed to, by the curriculum and by the necessity in every school district to require Can you show me the information? school, to act as though they were the them, and they'll be sued if they do not. At What is your evidence that this same. Inclusion can be this catalyst to say some point someone is going to say that if placement is not working? that we better rethink this whole system. you don't do this you are going to be in 30 Continued on page 29 PAGE 28 TASH Newsletter, Jan./Feb. 1999 1998 INCLUSION ROUNDTABLE

INCLUSION ROUNDTABLE the universities have responded to them. to be reasonably confident about inclu- Continued from page 28 [They] have restructured almost every sion for both the youngsters with disabili- program so that we are now dually ties and those without disabilities. It is not about disability, it is not about endorsing our graduates to be general special education, it's about curriculum education graduate teachers who at the Mara Sapon-Shevin and what kind of children we want to same time hold a special education One of the hopeful things is that create for the world. credential. In California that is known as change will happen as Alan said before, Mild/Moderate, and Moderate/SeVere. that this crisis will cause change. What are Alan Gartner They did not completely eliminate the they going to say if three-quarters of the What Mara suggests as the 'thank you division, but at least they have the population (in the school district) need to for Patrick,' I think that is going to standards that were developed by Mary be in special education? happen in two years. Every state now, per Falvey and some other colleagues. We Goals 2000, has a set of outcome stan- have standards that have a solid general Question: That is exactly what is dards and they are now kicking in. The education component as well as the happening. You are looking at this with a crisis in New York State is going to come special education competencies that I glass is half full' attitude.I live in Ohio and in the year 2001. When lots of the think, although not perfect, this organiza- they have created intervention classes for kids "regular kids" are going to flunk. And tion would embrace. to pass the proficiency test. They have there is going to be an uproar. There is In terms of the teachers who are not segregated more. going to be a lot of possible responses. credentialed, we have looked at the Open One possible response is an enormous University system that comes out of Rich Villa increase in the referrals to special educa- England. We have modeled it where Itis a matter of what you set your tion. I think the budget guys are going to teachers who are in remote areas, for standard at and how you choose to assess block that. Another is to abandon the example, would be provided with a children. Do you teach to the test? A public schools and go to vouchers. They curriculum and a mentor so that over the parallel to me is like saying that the can't do that. Third is to give up the course of 18 months they can develop the solution to malnutrition is to set a higher standards. There is going to be a lot of competencies to be effective teachers for standard. Saying how much people pressure on the state legislators to do that. all.It is a wild project. The chancellor of should eat and what vitamins they should A fourth option is that there be a coales- the 23 university systems convinced the take, instead of looking at the fundamen- cence around this increasingly diverse governor to give us 5 million dollars to tal cause. group of kids, some of whom we have develop and deliver a curriculum by June. recognized and others who we have not, We started in September. Everyone who Mara Sapon-Shevin to meet what we all want which is an was nominated and puf on the committee Thisis a time for political action as far improved quality of educational outcome has a foundational belief that all means as I am concerned. I think it is mistake to for all youngsters. That is the next step all. Our foundational competencies and keep talking about this as if it is an educa- after where we are today. activities are going to revolve around: tion issue and not a political and social jus- What are instructional strategies? What tice issue. I think one of the things that has Question: How is this changing what is are collaborative teaming strategies? What to happen is to broaden the agenda and talk happening for college prep and the reform of are processes for solution finding or about issues of excellence and equity. To teacher certification in that state? problem solving? When do we have a keep going back to this equity thing. How mismatch between what is the California can we say that three-quarters of the kids in Jacque Thousand curriculum and the way in which learners our education system are inadequate? This I am a Vermont transplant, as Rich is show their learning or access education? is a time to take to the streets and ask 'What to Southern California, which is a huge What evidence is there that stan- does this mean?' culture shock. California regulated to dards- based education actually improves Vermont is so segregated in terms of their education and that it might lead to more services to all children. And when I say inclusive education? For more information on IDEA all, I mean all. But there are some abso- or research on inclusive lutely fabulous things going on in Alan Gartner education, contact Dorothy and California in terms of some redesign of None yet. There is evidence to the Alan at the National Center on the credential standards, as well as contrary. However there is evidence, a Educational Restructuring and initiatives to credential the 30,000 good body of evidence, that inclusion Inclusion, 33 West 42nd Street, teachers who are in classrooms who do leads to improved learning for them as New York NY 10036-8099; not have a teaching credential. There are opposed to segregated learning. So in that (Phone) 212-642-2656. 30,000 people hired in August who have sense, inclusion works. There are studies bachelor degrees to teach. which address issues of academic, The first development is our new behavioral and social outcomes for credential standards and the way in which youngsters. There are data that leads one

PAGE 29 L 31 TASH Newsletter, Jan./Feb. 1999 JANUARY/FEBRUARY 1999 Available Now from Options in Community Living 03 Celebrating the Ordinary The Emergence of Options in Community Living as a Thoughtful Organization by John O'Brien, Connie Lyle O'Brien & Gail Jacob

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32 PAGE 30 TASH Newsletter, Jan./Feb. 1999 JANUARY/FEBRUARY 1999

TASH Continues its Vehement Opposition to Washington State's "Reinstitutionalization" Law TASH continues to oppose the Wash als and to your state Senate and Congres- ington State 1998 Legislature-ap sional Leaders to voice your opposition to proved Senate Bill 6751, which al- this bill, and to demand that this type of legedly gives people with developmental public policy not continue across the nation. disabilities "choices" between community To find out who your representatives services and RHC's (residential habilitation are, contact the Congressional Switch- centers). board at 202-225-3121. Not only do we oppose the segregation To contact officials in the State of of people with disabilities in institutions, but Washington: we oppose the practice of offering choice Governor Gary Locke on the basis of openings in "slots' controlled Office of the Governor by the government. This is not choice. PO Box 40002 "This new law states that "to ensure to other families for respite care or other Olympia, WA 98504-0002 continued choice, both community services. These services, however, may only [email protected] support services and RFIC programs are be provided if community support services Sen. Dan McDonald (R-48) guaranteed the present level of funding funding is available. The department will Republican Leader through June 30, 2003. Neither program work with the stakeholder group to assess 302 Legislative Building may be reduced below budgeted capacity services provided to people with develop- P.O. Box 40482 unless directed by the Governor. If the mental disabilities. Based on this assess- Olympia, WA 98504-0482 Governor directs such a reduction, both ment, the group will establish a long-term Phone: (360) 786-7694 community services and RHCs must be strategic plan for the department, including [email protected] considered. If either program experiences phased-in data collection and analysis of Sen. Pat Hale (R-8) a drop in capacity, the vacancies must be programs, services, and funding for people Republican Caucus Chair used to expand services to eligible people with developmental disabilities." Phase I 303 Legislative Building not currently being served. Vacancies in was set to begin in December 1998. P.O. Box 40482 RI-ICs must first be offered to eligible Taken from the Washington State Olympia, WA 98504-0482 clients seeking RFIC services. If the vacancy Republican Caucus Webpage http:// Phone: (360) 786-7614 can not be filled by a person needing care www.leg.wa.gov/senate/src/ddchoice2.htm [email protected] on a permanent bais, it may be provided Please write to the following individu- I.S

The Special Education Service Agency-Anchorage, Alaska SESA currently has a vacancy for an Education Specialist in the following specialty area. For more information about our organization, visit our website at http://www.sesa.org Education Specialist - Multiple/Significant Disabilities Provide technical assistance and consultation to educational teams working with students with the following disabilities: autism, moderate/significant mental retardation, orthopedic disabilities, other health impairments, traumatic brain injury, and/or multiple disabilities in rural/remote Alaskan school districts. Minimum Qualifications (1)Master's degree in education with an emphasis on one or more of the disabilities listed above; (2) Minimum of three years recent experience with this population; (3)Qualify for Alaska DOE Special Education Type A (teacher) Certification; (4)Demonstrated knowledge and skill levels in current "best practices" in the education of students with multiple/significant disabilities; (5)Current knowledge of assistive technology options for students; (6)Ability to work collaboratively with team members; and, (7)Excellent health and the ability to travel extensively and independently in rural/remote Alaska. Preferred Experience Direct experience with students with multiple/significant disabilities across age ranges- preschool through high school and various ability levels; Providing training to professionals and/or paraprofessionals; and Inter-agency networking and collaboration.

Contact: John Lund, Program Administrator Special Education Service Agency 2217 E. Tudor Road, Suite 1Anchorage, AK 99507 (907) 562-7372 Fax: (907) 562-0545 e-mail: [email protected]

BEST COPY AVAILABLE PAGE 311- 33 TASH Newsletter, Jan./Feb. 1999 TASH NEWSLETTER cc w 00 2 N-co Priscilla Newton, Editor 3 Policy Statement Executive Board 0LT. 0cn 7( Itis TASH's mission to eliminate physical and social ob- Liz Healey, President Q0_ 0. E E Doug Biklen,VicePresident stacles that prevent equity, diversity and quality of life Z cti 045 for children and adults with disabilities. Donna Gilles, Chairof the Executive Committee 0 Items in this Newsletter do not necessarily reflect at- Liz Obermayer, Secretary titudes held by individual members or the Association Joe Wykowski, Treasurer Nancy Weiss, Executive Director as a whole. TASH reserves the right to exercise editorial Jacki Anderson judgement in selection of materials. Michael Auberger All contributors and advertisers are asked to abide Linda Bambara by the TASH policy on the use of people-first language Kathy Boundy that emphasizes the humanity of people with disabili- Robert Holland ties.Terms such as "the mentally retarded," "autistic Jay Klein children," and -disabled individuals" refer to character- Tim Knoster istics of individuals, not to individuals themselves. Terms Debra Kunz such as "people with mental retardation," "children with Ming-Gon John Lian autism," and "individuals who have disabilities" should James Meadours be used. The appearance of an advertisement for a prod- Jorge Pineda uct or service does not imply TASH endorsement. Patrick Schwarz Jacqueline Thousand

MEMBERSHIP INFORMATION

Referred by: Name: Address: City/State/Zip:

Telephone: ( ) Fax: ( ) E-mail: General Membership (individual) $88. Is the above your Agency/business/university/ work address home address college/library/school $200. other (allows 3 conference attendees at the member rate) Please Check Appropriate Categories Self Advocate, Parent, Full Time Student, Direct (not more than three): Careworker/Paraprofessional/Personal Attendant (for whom payment of full fee would present a () Administrator/Adult Services hardship) $45. () Administrator/Education Family (grouprate) $136. ( ) Administrator/Other Lifetime Member $1000. () Adult Service Provider/Staff Add $10 for postage costs for members in Canada () Behavior Specialist and $25 for members outside the U.S. and Canada. () Case Manager () Early Childhood Services Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 pro- () Educator/Teacher cessing fee if check is not drawn on a U.S. bank. () Gov. Personnel (Federal, State, Local) If you would like to charge your membership, () Interested Individual/Advocate/Friend please fill in the necessary information: () Legal Services Provider () Mastercard () Visa ( ) Discover () Occupational/Physical TherapiSt Card Number () Parent/Family Member Expiration Date () Personal Assistant Signature () Professional Public Policy Advocate ( ) Professor/Instructor (College/University)( ) I would like to spread my payments out. () Psychologist Enclose 1/3 and you will receive 2 additional () Regular Education Teacher/ invoices at monthly intervals. Administrator If you are applying for a student membership, () Related Services Provider please provide the following information: () Self-Advocate Department () Social Worker College/University () Speech/Language Pathologist Student I.D. Number () Special Education Teacher/Support Anticipked year of completion Specialist () Staff Development/Trainer () Include an additional $15 if you are applying for an individual membership or $30 if you are ap- () Student (College/University) plying for an organizational membership and also () Supported Employment/Day Personnel want to become a member of your local chapter. ( ) Other Please make check payable to: TASH Moving? Address: 29 W Susquehanna Avenue, Suite 210 Please notify TASH Baltimore, MD 21204 of your new address. Telephone:410/828-8274Fax:410/828-6706 L BESTCOPYAVAILABLE 3 4 //

I'I r ,-24t4 A-.. i zrcit' iNat- ) tr.1.11UP

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I I 1

ALSO INSIDE: Do Not Resuscitate-Whose Choice?; People with Disabilities in Police Interrogation Rooms; and School District Ordered to Pay for Health Care Services MARK YOUR CALENDAR

1999 Calendar of TASH Chapter and Member-Sponsore Con

APRIL Mir Washington, D.C. Marriott 15th Annual Arizona Education in Italy: Metro Center TASH Conference An Inclusive Approach Contact: Denise Marshall Effective Strategies for Creating May 18-June 9 Phone: 410-828-8274, ext. 103 Inclusive Classrooms Site visits to schools in Rome, E-mail: [email protected] Guest Speaker: Mary Falvey, Ph.D. Florence, Parma and other locations April 14, 8:30 AM 3:15 PM Contact: Dr. Carol Berrigan, Seminar Orange Tree Golf and Conference Resort Director, Syracuse University DECEMBER Scottsdale, Arizona Phone: 315-443-3851 Contact: Janet Holt E-mail: crberrig @syr.edu Annual TASH Phone: 602-661-0650 International Conference E-mail: janethllll @aol.com JULY "TASH 2000Our Turn Now" CAL-TASH Summer Symposiums Stories of Change: in Santa Barbara December 8-11 Annual CAL-TASH Statewide July 26-27"School Inclusion" Chicago Hilton and Towers Conference July 29-30"Positive Behavior Support" Contact: Kelly Nelson April 22-24 Contact: Eileen Medina, Phone: 410-828-8274 x105or San Diego Marriott-La Jolla, CA Phone: 805-967-2042 1-800-482-8274 x105 Contact: Eileen Medina, E-mail: [email protected] E-mail: [email protected] Phone: 805-967-2042 1999 Toronto Summer Institute E-mail: [email protected] Do you have an upcoming TASH July 3-9 chapter meeting or member-sponsored Toronto, Canada The Sun-Tash/Arc Conference conference that you would like to Contact: Inclusion Press April 22-23 announce in the Newsletter? Send Phone: 416-658-5363 Albuquerque Hilton notice of the conference to Denise E-mail: [email protected] Contact: Liz Keefe, Marshall at [email protected] at least 6 Phone: 505-277-0987 weeks before the event date. We will E-mail: lkeefe @unm.edu SEPTEMBER make every effort to include the event National Spinal Cord Injury in the meeting calendar. Association Annual Meeting and Education Conference September 26-29 I.%

BEST COPY AVAILABLE PAGE 2 36 TASHNewsletter,March 1999 MARCH 1999

TABLE OF CONTENTS High Court to Hear Arguments SOJ'VGS orTHE SELF ADYOCACY MOVEMENT in Olmstead Page 4 RESPECT Call for Nominations for the TASH Executive Board Page 4 Order your copy of this popular 1999 TASH Annual Conference Logo Page 5 collection of songs about the Do Not Resuscitate Whose choice is it? Page 6 trials and triumphs of the Closing Brandon Training School Page 8 human spirit. Don't miss such Portrait of An Artist Page 11 The Vulnerability of Persons with favorites as "Respect," "Close Disabilities in Police the Doors," and the unofficial Interrogation Rooms Page 13 IDEA Regulations Released Page 15 anthem of the self-advocacy California At A Crossroads Page 18 Education Corner: Paraeducator Support movement, "Speaking For for Students with Disabilities Page 21 Ourselves." Disability Humor: Moving Beyond "That's Not Funny!" Page 25 School District to Pay for Available on cassette tape ($10 ea.) or compact disc($15). Nursing Services Page 28 Make your check or money order (U.S. dollars) payable to: Self Advocates Becoming Empowered P.O. Box 105-CI, New Fairfield, CT 06812 TASH (formerly The Association for Per- sons with Severe Handicaps) is an international advocacy association of people For volume discounts contact with disabilities, their family members, Tia Nelis (312) 413-1284 or Karl Williams (717) 238-0744. other advocates and people who work in the disability field. TASH actively promotes the full inclusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Av- enue, Ste. 210, Baltimore, MD 21204 11=IMIM-1 -111/ Whom Do I Contact?? or phone (410) 828-8274, ext. 8 or e- mail: infogtash.org. For issues of policy, chapter orcommittee support, or general concerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e-mail:[email protected]

MISSION STATEMENT For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of TrainingandTechnical Assistance, at TIISH (410)828-TASH, Ext. 103, e-mail:[email protected] For questions about the 1999 Annual TASH Conference, call: Kelly Nelson, Stretching the boundaries of what is possible ConferenceCoordinator, 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: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] segregated and everyone belongs; For information on government affairs or fundraising/development, call: Marcie Forging new alliances that embrace diversity; Roth, Director 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 Newton, Eradicating injustices and inequities; Director of Marketing and Communications, at (410) 828-TASH, Ext. 102, e-mail:[email protected] Supporting research and disseminating knowledge and information; For information on the Journal (DASH), call: LindaBambara,Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, The TASH Newsletter is available on audiocassette for people whose disabilities make this form preferable. Call (410) 828-8274 ext. 102 to request the recorded version.Requests for permission to reprint material appearing in the TASH Promoting excellence in services. Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Newsletter Editor. Permission requests can also be faxed to (410)828-6706or sent via e-mail to: [email protected]. F3ERT(',ODY AVAILABLE PAGE 3 7 TASH Newsletter, March 1999 FROM THE EXECUTIVE DIRECTOR

Court against Tommy Olmstead, Georgia's event. A favorable Supreme Court ruling Human Resources Commissioner. The will mean freedom for hundreds, and State appealed, but L.C. and E.W. won perhaps thousands, of people with again in the 11th Circuit. Georgia appealed disabilities across the country. An the case to the U.S. Supreme Court. unfavorable ruling will mean a continued Originally, the Attorneys General of struggle on behalf of each person who 22 states signed on to an amicus brief, remains institutionalized, person by joining Georgia in their effort to keep person, facility by facility, state by state. people with disabilities segregated in As Justice for All has put it, "Will institutions. Eventually, six of these states Olmstead be our Brown vs. the Board withdrew their support. However, in of Education, where school integration From the Executive Director recent weeks a number of other groups was determined to be the right of all BY NANCY WEISS have filed amicus briefs supporting children ... or will Olmstead be our Georgia's claim that by keeping people in Dred Scott, in which the Supreme High Court to Hear institutions, they are not violating their Court ruled that a slave could not sue rights as guaranteed under the Americans for his freedom?" Arguments in with Disabilities Act. The groups siding You can participate in this historic Olmstead against the right of people with disabilities event and help assure the freedom of to receive support outside of institutions people who remain behind walls. The Within the next few weeks the include the National Conference of State Olmstead case will be heard by the U.S. U.S. Supreme Court will hear a Legislatures, the Council of State Govern- Supreme Court on Wednesday, April 21" case that will affect the rights ments, the National Governor's Associa- at 10 a.m. Join TASH, ADAPT and of people with disabilities as significantly tion, the National Association of Counties, disability rights activists from across the as any case in recent memory. The case, the U.S. Conference of Mayors, the country on the steps of the Supreme called Olmstead vs. L.C. and E.W., is National League of Cities, The American Court for a candlelight vigil beginning brought on behalf of two women from Health Care Association (the nursing Tuesday, April 20' at 8 p.m. and continu- Georgia who had to live in a state institu- home lobby) and of course, the mis- ing throughout the night and during the tion in order to receive the support named, Voice of the Retarded. All but the hearing on the 2151. A second rally is services they needed. Known by their last of these groups know or care little planned for May 12th at noon to keep initials, L.0 and E. W. sued the State of about the rights of people with disabilities focus on the need to uphold freedom Georgia under the Americans with and are concerned only with what a while the justices are deliberating. For Disabilities Act claiming that being forced Supreme Court decision in favor of the more information call Marcie Roth at 410- to live in a state institution violated their plaintiffs might cost them. Voice of the 828 -8274, ext. 104, or check our web right to services in the most integrated Retarded is a parent group that works to page: www.tash.org for regularly updated setting. In April, 1998, they won their keep institutions open. information. case in the Northern Georgia U.S. District The Olmstead case is a watershed (4

The TAM Elections Committee is seeking nominations for the TAM 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 April 30* will be considered by the Elections Committee in their selection of a slate.

PLEASE SEND THE INFORMATION REQUESTED TO: Elections Committee c/o 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 e-mailed to: [email protected]

BEST COPY AVAILABLE PAGE 4 38 TASH Newsletter, March 1999 MARCH 1999

4 '10A .15,31, 4P;jeW T

mm asiNOMBIMMMEN 1j, 0saMe ®m We would like to thank Howard Community 1," Services for sharing this graphic for useas the 1999 IMO°. TASH Conference Logo. The graphic featured isone ma/PION. omormi, painting from a trilogy created by the staff of Howard ..... Community Services, a division of the Howard Center 11- for Human Services, in partnership with Vermont artist Suzanne LeGault. Howard Community Services, located in Burlington, Vermont, providesa comprehensive array of supports and services to individuals with developmental disabilities and their families.

Ae For more information on the trilogy contact: Howard Community Services Katherine Long Recruiter, Howard Community Services 109 S. Winooski Ave Burlington, VT 05401 ' TASH 2000: Bern Now" (802)652-2126 1999 TASH Conference For more information regarding the 1999 TASH Conference Chicago Hilton and linters o December 8-11, 1999 contact Kelly Nelson at 410-828-8274 x105 or

Coordinator, Education/Training Programs Center for Autism and Related Disabilities University of Florida

The University of Florida, Center for Autism and Related Disabilities (CARD) hasan opening for a Coordinator, Education/Training Programs. CARD is a state funded project that offers support, training, technical assistance, and program development for individuals with autism, sensory impairments with additional disabilities, and deaf-blindness, as well as their families, peers, school personnel, and support providers in the state of Florida. Preference will be given to qualified applicants who have a doctorate or master's degree in special education, psychology, communication disorders, or a related field and direct experience working with individuals with autism and related disabilities and their families. Salary range is $34,000 to $50,000 depending on experience and qualifications. Minimum qualifications: MA degree in an appropriate area of specialization (Communication Disorders, Psychology, Education, Occupational Therapy, Social Work) or a BA degree in same with 2 years of related professional experience. Experience and/or educationin working with individuals who have autism and/or multiple disabilities, includingsensory disabilities (hearing, vision or deaf-blindness); experience in working with families; exp. and/or training in adult services;exp. and/or training in inclusion of students with significant disabilities in general education setting;exp. with individuals with significant disabilities who exhibit challenging behavior. To apply, send cover letter and resume to Diana Stetter, University Personnel Services, PO Box 115002, Gainesville, FL 32611-5002. Reference LP# 60823DS. Current deadline is April 1 but may be extended contingenton response, please call.If an accommodation due to a disability is needed to apply for this position, please call (352) 392-4621or TDD (352) 392-7734. AA/EA/EEO.

BEST COPY AVAILABLE PAGE 5 - 39 TASHNewsletter,March 1999 DO NOT RESUSCITATE

Do Not Resuscitate Whose choice is it?

many people with developmental life. Conclusions of this nature then disabilitieslivinginthe justify non-treatment decisions. In many cases one can interpret communities of British Columbia In many cases one can interpret have had a significant impact on changing conclusions about "poor quality of conclusions about "poor quality of life" as preconceived notions about disability. They life" as indications of a failure indications of a failure in service delivery, have pushed the awareness of society in in service delivery, as a signal as a signal of the need to reconsider how general, and of health practitioners in par- the person is served rather than a need to of the need to reconsider how ticular, to higher levels. They have secured restrict treatments or resuscitation. There health services that are adaptable and indi- the person is served rather are examples in the disability community vidualized, and they have demonstrated than a need to restrict of people who were in crisis when they that disability is not an ongoing illness. treatments or resuscitation. lived in an institution, yet they thrived However, although we have seen many when they moved into the community. gains, there are still areas where people with Similarly, there are individuals who developmental disabilities are at risk. This experience poor quality of life in one type article looks at two features of the health shifts in thinking about disability and are of living arrangement yet thrive in a life- care field that continue to place people with liberating the definition from a purely sharing model of support. disabilities at risk: Do Not Resuscitate biomedical framework. Increasingly, Several factors influence how advance (DNR) orders, and decisions to withhold practitioners recognize disability not as an directives and resuscitation decisions are or withdraw nutrition. illness but rather as a unique and adaptive made.Predictions about life expectancy human circumstance and lifestyle. and "mental age" can play a significant role The use of DNR orders and However, health care practitioners vary in such decisions. For example, if a per- advance directives widely in their ability to distinguish between son has already surpassed the predicted life DNR orders were initially used to en- acute illness, chronic illness, and disability. expectancy associated with their disability sure that people who were terminally ill or It is precisely this confusion that influences and they develop a serious acute illness, who were facing imminent death were al- and defines decisions about resuscitation, they may be considered to be at the natu- lowed to die with a sense of dignity, in their and judgements about whether or not it is ral end of their life and not be offered full own time and way, without unwanted and "futile" to provide treatment. treatment. Yet, estimates of life expectancy invasive treatment. In recent years, how- The difficulty of distinguishing may be based on old information that has ever, questions about resuscitation have between disability and illness is compli- not been reviewed or adapted to the been raised well in advance of serious ill- cated by another factor: assessing quality individual's current situation. Similarly, ness in order to determine a person's pref- of life. Health professionals have decades ago, people with developmental erences for how much medical interven- concerns about providing treatments that disabilities were sometimes assigned a tion they want at the end of their life. Two may ultimately be more harmful than "mental age" without consideration of how vehicles used to formalize resuscitation beneficial. They see quality of life issues future life experience and psychological, decisions are living wills and advance di- as a way to safeguard the patient from social and spiritual development would al- rectives. Proponents of these vehicles ar- being increasingly incapacitated as a ter and change them. gue that people should document their result of treatment. The challenge here is People with or without disabilities wishes regarding resuscitation before they that making quality of life decisions for often raise another important question face a serious illness or condition that ren- others involves subjective judgements; about resuscitation and advance direc- ders them unable to make a decision. assessments of quality of life are coloured tives. How can a patient's response in a Although ideas and attitudes about by societal bias and by the practitioner's medical crisis or the outcome of a treat- serious illness and "incompetence" experiences and knowledge about ment for that crisis be accurately pre- continue to be redefined by citizens with disability. As a health practitioner's focus dicted? It is difficult to predict with disabilities, misunderstandings still shifts from assessing clinical factors to certainty how an individual will respond, routinely arise out of preconceived and assessing the impact of a person's level of what complications will or will not arise, previously accepted ways of thinking. disability, the judgements of "poor quality and what interactions with other co- Within the health care system, practitio- of life" becomes greater. The assumption existing traumas or treatments will occur. ners are beginning to make paradigm is if you have a disability, you don't enjoy Continued on page 7 PAGE 6 TASHNewsletter,March 1999 BEST COPYAVAILABLE 40 DO NOT RESUSCITATE

It appears that under these guidelines, phy- Do Not Resuscitate sicians would ultimately decide, on the basis Quality of life judgements in this of "futility" or "non-futility," whether or not Whose choice is it context present similar problems for to provide treatment. Continued from page 6 people with disabilities as they do in Quality of life judgements in this con- relation to resuscitation decisions text present similar problems for people with disabilities as they do in relation to resusci- It is predictable, however, that patients will quality of life is a subjective assess- have a chance of survival, a chance to face tation decisions quality of life is a subjec- their trauma and treatment outcomes, if ment, coloured by the experience, tive assessment, coloured by the experience, they are resuscitated. Unfortunately, values, and biased measuring tools of values, and biased measuring tools of the advance directives cannot always offer a the health practitioner health practitioner.For example, many safeguard. They cannot anticipate every people in their homes may eat with the aid possible scenario, nor can they allow for a of gastronomy or jejunostomy tubes. Out- change of mind or circumstance in all side of a hospital, this is their "norm," it is cases. ment decisions. Furthermore, it is not al- part of their adaptive lifestyle.In the con- Another factor that often guides ways possible for people with disabilities to text of an acute care hospital, however, tube decisions about resuscitation is whether the use whatever procedures have been put in feeding is perceived to be a treatment. person's condition or quality of life is likely place to change or appeal decisions. One of Although there may well be instances to improve as a result of the intervention. the best safeguards for individuals to avoid in the dying process when it seems ethical When the person has a pre-existing such risks is to appoint a few selected loved and clinically sound to stop nutrition or disability, one has to wonder to what extent ones who can assist with making decisions not to force nutrition, the potential for a decision about whether or not to about treatments and resuscitation should misguided deciion-making about the lives resuscitate is determined by the realization they become unable to do so themselves. of people with disabilities is extremely that a life-sustaining intervention will not Fortunately, many people are gaining high. The Euthanasia Prevention Coalition "improve" or change the disability. an understanding of the multifaceted and of British Columbia is increasingly con- Frequently, tools for assessing quality high-risk nature of resuscitation and cerned about the impact of the slippery of life and competence do not allow for treatment decisions for people with slope toward physician-assisted suicide and the consideration of unique circum- disabilities. Within hospitals, diversity euthanasia on the lives of people with stances, personal diversity, cultural programs are striving to honour and disabilities. The Coalition has responded expectations, environmental expectations, understand the ways in which disability has to the draft guidelines for the delivery of and differing values. Using generic tools far-reaching implications for service delivery, food and fluids from this perspective. developed for systematic efficiency will and patient-centered care initiatives are Health care practitioners, and indeed not accurately evaluate, for example, the focusing on individualized services. society at large, continue to gain an under- competence or quality of life of those with In addition, some ethics committees standing of the ways in which we contribute developmental challenges, hearing will review decisions that are made on be- to inequitable treatment for people with dis- impairment, mental illness, or those who half of an individual. The power of an in- abilities. Yet, health care practitioners, fami- communicate non-verbally or speak a first dependent second opinion has proven most lies, and advocates may vary widely in their language other than English. Standard effective to help determine if an individual ability to challenge health care institutions generic tools may result in false conclu- has had the benefit of thoughtful, personal- on behalf of the individual. sions of incompetence, poor quality of ized treatment options. Personal advocacy Without a deeper understanding of how life, lack of awareness, distress, and/or and medical advocacy have also on occa- we perceive disability, and some evolution lack of positive experiences. sion proven to be necessary and beneficial. in how we judge the quality of life of indi- Advance directives and DNR orders viduals with a diversity of abilities, policy operate within an institutional culture, Withdrawing and Withholding guidelines about resuscitation and the deliv- and to some extent they represent the Nutrition ery of food and fluids threaten to open the need to bring some level of organization Recently, hospitals and family practice door to more dangers than benefits. and efficiency to the task of providing physicians have considered draft guidelines health care to large populations of people. to define the delivery of food and fluids as a Community Living News, Fall/Winter 1998. Reprinted with permission of the At times such organization may be useful treatment. This means that nutrition would author. Nancy Noble is a health care in providing direction to practitioners as be subject to a decision-making process about practitioner who currently sits on the to the wishes of the individual when whether or not to withhold or withdraw it as Board of Directors of the Euthanasia treatment decisions are necessary. a treatment. The draft guidelines propose Prevention Coalition of British Colum- bia. For more information, please con- However, if the basis of understanding that health practitioners use measurements tact Dr. Will Johnston, Co-Chair of the at the root of compiling information and the of quality of life to determine whether or not Coalition, at (604) 324-4155; or Dr. process that goes into establishing advance to provide food and fluids. Quality of life is Toni Parsons at (604) 986-0543. directives are flawed, then people can find measured in this instance by assessing aware- themselves facing compromised non-treat- ness, distress level, and positive experiences. PAGE Z 41 TASH Newsletter, March 1999 BRANDON TRAINING SCHOOL

he Brandon Training School The philosophy and the mission (BTS), Vermont's only public CLOSING were based on a simple ethic:that in institution for people with men- Vermont, everyone should be in the com- tal retardation and developmental dis- munity. That ethic was first carried out abilities, opened in 1915 and closed in BRANDON in the school systems across the state, 1993. During those years, a total of 2,324 which are among the most inclusive of people lived there. This article examines any state in the country. the closure process for Brandon; it is TRAINING The judicial review process was used based on a larger report of a study con- for at least 15 years, and the finding al- ducted by the Center on Human Policy. SCHOOL: most always was that the person should leave the institution. One attorney re- The Idea of Closure flected, "I think one of the things about The values of a community or group A VERMONT Vermont that is different is that our of people permeate and influence what project worked a lot of the time hand- they do, including how their service sys- in-hand with the Division of Mental Re- tems operate. People in Vermont felt that STORY tardation." People seemed to see them shared values such as "caring for one's [the Division of Mental Retardation] al- neighbors" and "those who have the least BY BONNIESHOULTZ, PAM WALKER, KATHY HULGIN, most as allies rather than adversaries be- deserve more" helped create a consensus ROBERT BOGDAN, STEVE TAYLOR AND CHARLES MOSELEY cause both had the interest of the resi- in support of closure.Additionally, dents and the need to move them into people felt that Vermont's small size fa- the community in mind. cilitated the communication and collabora- plan for developing community resources tion involved in closure. and moving most of the approximately Beginning the Closure Process Closing Brandon took approximately 300 residents out of Brandon. Although In 1988 following the appointment of 20 years. Vermonters who have been the settlement did not mention closure, a new Division director, closure planning connected to the developmental disability according to one of the lawyers, "we knew actively began. The following year, the service system for 20 years or more trace that if in fact they carried out the terms of director distributed a "Unification Plan," the idea of closing BTS back at least to the the settlement...they were going to end up which outlined the problems and a mid-1970s. In those days, more people with three people in the place," and it solution: unifying the system by closing were leaving BTS than entering and the would have to close. Brandon and converting to a fully commu- census had gone down, dropping from Nearly 250 people moved into the nity-based system. The Unification Plan nearly 700 in 1968 to around 450 in community between 1979 and the early had three major objectives: (1) to convert 1976. A few key people attended work- 1980s, due in part to the state's successful the system of services from a two-tiered shops conducted by Wolf Wolfensberger application for and use of the Medicaid structure supporting both the institution and his colleagues, adopted normalization Home and Community Based Services and the community, to a unified commu- as a philosophy that should be applied in Waiver. Later, community placement nity-based system; (2) to move all Vermont, and talked about developing a dropped as resources and political support remaining residents of BTS to the commu- broader range of community services. The for movement dwindled. By 1988, when nity; and (3) to build the capacity of the idea that BTS should be closed was raised a new director of the Division of Mental community mental retardation system to and became a part of their overall mission. Retardation was appointed, the average respond to special education graduates, Those leaders began to develop some of daily number of residents in Brandon was families in need of in-home support, the pieces that were later seen as crucial nearly the same as in 1982. Division staff young adults aging out of social services strategies that led to closure. came to believe that many statewide custody, persons with mental illness and The Vermont Association for Retarded problems could be traced to the continued mental retardation, persons with mental Citizens (now the Arc), the state, and the existence of Brandon. retardation who commit crimes, and Developmental Disability Law Project In Vermont, as elsewhere, a commu- persons in crisis. worked to establish legislative bills and nity of advocates--parents, attorneys, Once the Governor's office, the executive orders that helped to build the professionals, and caring citizenshad a legislature, the vendors, and the advocates community service system. Another dramatic effect on the shape of services had agreed that Brandon should be closed, major event during those years was the and on the eventual closure. One said, many pieces had to be put in place. Until filing of a lawsuit by the Vermont Develop- "It's not like we sat down 20 years ago Brandon closed, bridge money had to be mental Disability Law Project (protection and said, 'How are we going to do allocated so that both the institution and and advocacy agency) on behalf of Robert this?' We really built our philosophy the community services could operate as Brace and five other residents who wanted and our mission. We built up the com- effectively as possible, and so that new to move into the community. The munity by demonstrating that success community programs and an infrastruc- settlement in 1980 of this lawsuit, called could be achieved. That's the biggest ture could be developed. The needs of the the "Brace Decree," included a 10-year teacher, I thinh, more than just words." Continued on page 9 PAGE 8 42 TASHNewsletter,March 1999 BRANDON TRAINING SCHOOL

CLOSING BRANDON out the plan. For example, the providers developmental disabilities services.Years TRAINING SCHOOL: felt strongly that they needed a backup sys- ago, the directors of the services for people tem to handle crises, especially those involv- with mental retardation and developmental A VERMONT STORY ing behavior that was dangerous to an indi- disabilities formed their own organization, Continued from page 8 vidual or the people around him or her. The the Vermont Mental Retardation Program state workers who would lose their jobs Vermont Crisis Network was developed to Directors. This organization, and the indi- had to be addressed, and the community respond to this need. vidual directors, played a major role in the providers had to develop the programs The Division also developed criteria closure of BTS, the development of individu- and infrastructure that would allow them regarding where and how people could be alized services, and the creation of safe- to serve both the residents of Brandon and placed in the community. One criterion was guards. As they worked on these issues, they people waiting for services. Financial issues that, whenever possible, people should live benefited from the accessibility and collabo- such as the fact that Medicaid reimburse- close to their friends and families, and that ration of state and regional administrators. ment rates would be lower for community family members and/or guardians would be Moving toward individualized services than for Brandon, and the need to as involved as much as possible in the plan- services. As was to be expected in the develop an individual budgeting mechanism ning and placement decisions. The Divi- deinstitutionalization process, certain had to be dealt with as well. sion also empowered Brandon staff mem- pressures influenced the effort to develop While the Unification Plan had stated bers to have input into placement decisions. individualized services. For example, the that it could be done, not everyone agreed at Division staff met monthly with all of decision of where residents of BTS moved first on how to do it. The Division planned the community agency directors. During was somewhat determined by the capacity to move ahead, selecting those agencies that these meetings they received commitments of the different agencies. Other pressures, were willing to work with them from the start. to serve each person who was supposed to such as the commitment to employ staff of If need be, they were prepared to develop move during that month. Because the BTS and to serve a large number of people additional agencies to assist in this process. money they had to spend was to come in a short period of time, influenced the However, the existing providers came together from money saved through the closure development of services, as well. and developed an implementation plan show- process, they transferred funds at different Though they realized that some group ing how they could work to make closure times, with the transfers tied to the layoffs living situations would have to be developed and expansion of community services occur that occurred as the dorms were. emptied. in the interest of time, directors as well as in a concrete and timely way. The bridge money they were allocated, state administrators agreed to develop only One theme that came up repeatedly $400,000 a year for two years, gave them a very limited number of agency-operated was that what was good for the residents the ability to support a person in the facilities.Instead, they relied on a service of Brandon Training School had to be the community before the layoff of staff in the model called the "developmental home" to starting place for decision-making. This institution could be completed. serve the largest group of people. This typi- belief was shared by people from almost The central coordinating function cally consists of a person or family who all of the stakeholder groups. The only carried out by Division staff members was agrees to share their home with an individual people who opposed closure also used critical to the success of the closure and support him or her. Funding levels are "the good of the residents" as their reason. process. In addition to orchestrating the determined on an individual basis by the These stakeholders included some timing and the numbers of placement, agency that is developing services. In many members of the Brandon Training School they followed up on problems along the of these situations, it is a staff person from Association, many of the employees at way and worked closely with the institu- BTS who has invited an individual to live in Brandon, and some of the Brandon tion director and his staff. his or her home. townspeople (many of whom were also Finally, the Division did a great deal Directors are aware that some of these employees or families of employees). It to support the BTS staff in getting other situations may not be the most ideal or was evident by 1990, however, that BTS jobs. The Department of Employment individualized possible. In any institution could and would close, and that the major and Training opened an office on campus. closure process, such trade-offs inevitably stakeholders would be able to work They also had job fairs, and made resume occur in the interest of timely closure. At together to make it happen. books that people could look through. the same time, the fact that they have The Agency of Human Services, at the acknowledged the trade-offs, and have not Division's Role in Closure Division's request, granted a special created a vast number of group living The Division developed and followed priority for people coming from BTS for situations will facilitate the future develop- through with many structural changes that new state job openings. ment of individualized services. In made closure possible. They developed an addition, the directors' efforts to create and individualized budgeting approach to fund- Community Providers' Response: maintain responsive agencies by keeping ing community services, using the Medic- Service Planning and Development agency size small and supporting staff aid waiver. They created an infrastructure Community services in Vermont are enhances their capacity to develop further that would support closure, working actively provided primarily through nine commu- individualized supports. with the providers and developing or fund- nity mental health centers, which provide ing what they felt they would need to carry both mental health and mental retardation/ Continued on page 10 PAGE 9 43 TASH Newsletter, March 1999 BRANDON TRAINING SCHOOL

CLOSING BRANDON 3. Accessibility of state administrators. Many community.It was positive that state people reported that the accessibility of administrators worked collaboratively TRAINING SCHOOL state administrators facilitated the work with Brandon community members to A VERMONT STORY toward closure.They seemed to be deal with issues, particularly regarding Continued from page 9 knowledgeable about what was going alternative uses for the facility Creating safeguards. During the on at the local level, and people felt 10. Maximizing the opportunities for develop- closure process, Vermont's capacity to comfortable walking into their offices ment of individualized supports at the time support people in crisis situations in the and talking with them. of closure and in the near future. Finally, community was strengthened through the 4. Responsiveness of administrators.It as people moved out of Brandon, ef- establishment of a statewide crisis network, seemed to people that administrators forts were made to assist as many people as well as the development of expertise at made every effort to be responsive. as possible to move to individualized local levels. Though the Vermont Crisis They took time to listen to people's is- settings of their choice. However, as in Network offers emergency placement in sues, and they made sincere efforts to any process of institutional closure, it was some cases, it was developed primarily as a respond in some way to these issues. not feasible to create individualized set- system to build the capacity of agencies 5. Good communication and trust between tings for a large number of people in a around the state to support people in crisis. people. The fact that there was good, relatively short period of time. In light From the beginning, there was a strong open communication between a wide of this, however, the state made little use belief that service providers must maintain variety of individuals and constituen- of group homes and other facilities, and primary responsibility and enable people to cies facilitated the closure process. relied more extensively on placement in stay in their homes regardless of problems People could disagree and debate developmental homes. This seemed to they may have. There are three levels of issues without feeling that their be a reasonable compromise, one that is services provided through the network: (1) relationships would be jeopardized. preferable to group homes and one that interested members of agencies throughout 6. Focus on building the capacity of the com- will create less obstacles to future devel- the state participate in monthly meetings to munity.Rather than focus on the clo- opment of individualized supports. present challenges and problem solve sure of Brandon alone, emphasis was together; (2) members of the network are placed on expanding and strengthening The experience of closure of BTS has available to visit an individual, his or her the community service system.Re- demonstrated both the possibilities for in- family, and the agency providing services to sources were allocated to the commu- stitutional closure, as well as the possibili- assist them in developing a plan for change; nity service system to support this effort. ties for operation of an entirely community- and (3) in situations where a person is 7. Significant and careful planning.State based service system. While the task of clo- considered at risk, the network provides administrators and community service sure and conversion to a community-based emergency, temporary placement, while the providers devoted considerable time system was on a much smaller scale in Ver- agency is involved in developing the and effort to planning for the closure of mont than in most other states, the experi- capacity to support the person. Brandon and expansion of the commu- ences nevertheless provide valuable strate- nity service system. The planning pro- gies and lessons for those elsewhere inter- Conclusion: Key Factors Related cess attempted to anticipate needs and ested in working toward closure. to Closure to put structures in place to deal with 1. Recognition of shared values and common potential challenges. Planning also en- This article is based on a longer compassed alternative employment op- report: Shoultz, B., Waltzer, P., Hutgin, vision.It was significant that shared K., Bogdan, B., Taylor, S., & Moseley, values and a common vision were held tions for BTS staff. While closure did C. (1999). Closing Brandon Training and recognized across a variety of cause some difficulties for employees, School: A Vermont Story. Syracuse, NY: the large majority were offered reason- Center on Human Policy. For copies, groups of people within the state, please contact the Center on Human including many parents, people with ably comparable positions. Policy at 315-443-3851 or e-mail providers. Rather than competition be- The preparation of this article was agency administrators, and advocates. supported in part by the National This, in turn, influenced other key tween service providers, there was sig- Resource Center on Community groups, such as union representatives, nificant collaboration among them. To- Integration, Center on Human Policy, legislators, and Brandon community gether, they reached consensus about Schoolof Education,Syracuse supporting closure, and planned and University, through the U.S. Department members, many of whom adopted and of Education, Of of Special Education added to the vision. strategized ways to best serve people in and Rehabilitative Services, National 2. Long-term efforts of advocates in building the community by building on existing Institute on Disability and Rehabilitation a consensus. The shared values did not strengths of providers and working to Research (NIDRR). No endorsement by the U.S. Department of Education should just naturally emerge. They were the fill in gaps in the service system. be inferred. The Center on Human Policy result of years of work by advocates to 9.Development of a positive working rela- subcontracts with TASH for space in this build a common vision through educa- tionship with the local community around newsletter. tion, training, litigation, judicial over- issues of closure. The closure of BTS pre- sight, and personal networking. sented some hardships on the Brandon

BESTCOPYAVAILABLE PAGE 10 44 TASH Newsletter, March 1999 PORTRAIT OF AN ARTIST Portrait ofanArtist BY LARRY BISSONNETTE AND PASCAL CRAVEDI-CHENG

v1,14- '448. 55-141 ". - r, 1.; .

- t,

_ Uncle Leo's Earthy Dwelling (1989)

-.'447are1/4 - Larry Btssonnette '- 5.4 Larry Bissonnette is an artist who lives in Winooski, Vermont. Larry AL spent over ten years living in Vermont's state institution for people with developmental disabilities, SI

Brandon Training School.His Alt) experiences there have provided the subject matter for many of his gial" paintings and drawings. Maddening Crowds Lessen Where Pods of Slathered Paint Kick Into Gear (1996)

In 1991, Larry was introduced to facilitated communication (FC), which helped him to combine words with his art to express his thoughts and ideas.

Utterly Grey Day at Brandon "*. Training School (1988)

Motion Sensitive Lounging Viewers of Movies Clammer Noisily for First run Rolls of Adventure Rather Than Reruns of Ohlahomaed and Worn Out by Nonstop Projections (1996) Continued on page 12 PAGE 11 45 TASH Newsletter, March 1999 PORTRAIT OF AN ARTIST

Larry has been actively involved in educating others about FC and the importance of self-expression for people with disabilities. He presents regularly to college classes and community groups, and at local and national conferences.

Pell Me 11 Mainland of Rolling Fortress of Monastery of Brandon Training School (1987) ata

(Left) Aunt Theresa Rings in Her Eyes Pizzaz (1987)

Larry has been drawing and painting since he was a young child. He is one of the featured artists of the GRACE Project (Grass Roots Art And Community Effort) based in Hardwick, Vermont. Larry's work has been exhibited both locally and nationally and, most recently, as part of the GRACE exhibit at the annual Outsider Art Fair in New York City in January 1999. Larry at work in his studio.

My Muralistic Sensitive View of Life (1996)

Larry welcomes inquiries about his art. His address is 93 Pine Street, Winooski, Vermont 05404. If you wish to contact Larry by e-mail, you may do so in care of Pascal Cravedi-Cheng at pascalcc@howardcenterorg

PAGE 12 46 TASH Newsletter, March 1999 CRIMINAL JUSTICE

The Utter Vulnerability of Persons With Mental Disabilities In Police Interrogation Rooms ily and the interrogators during the trial. The familyswore on by Robert Perske the witness stand that Sammy was home with them when the Sri +YaNE StlfSVO.e,ftt iOVR, crime was committed. The interrogators, on the other hand, testified that "Mr. Rafter told us things that only the killer could Author's Note: At the National Conference on Wrongful Convictions know." (This exact statement is voiced often by interrogators, and the Death Penalty (Northwestern University School of Law, Chicago, Illinois, November 13-15, 1998), 75 innocent people who had especially when there is no written or.electronic recording of been wrongly sentenced to death were invited to attend. Twenty-nine what actually happened in the interrogation room.) made the engagement and their speaking for themselves made the conference a momentous experience. Others were not yet ready to Sammy in his trusting way was no match for his interroga- participate in such a large meeting. Nevertheless, a number of tors. They were well trained in the use of deceptive tacticsall lawyers, academics and advocates were invited to speak on behalf of all those who had been exonerated. One of those presentations follows. aimed at getting a confession for murder out of Sammy. Ifa cunning predator like Ted Bundy had been the suspect, the detectives would have certainly treated him differently. But My circle of competence is small. I'm a worker and Sammy was a sitting duck. If he had committed the crime, the writer who tracks persons with retardation and other confession would come easily in that coercive setting. if he mental disabilities who were coerced into confessing to didn't do it, a confession would stillcome easily. heinous crimes with little or no physical evidence to back up Why? Because Sammy possessed certain propensities that in- their admissions. I began this pursuit some 20 years ago terrogators used against him. Nine of these follow that come from because of a murder conviction in a town where I used to live. a longer list we should know about (Perske 1991, pp. 15-23). On a warm spring night, just after supper, two detectives appeared at the home of Sammy Rafier, 20, a man with mental .1.Relying on authority figures to solve tough problems. disabilities. They asked Sammy if he would help them solve a Many of us get zest out of life by spending days solving tough crime. Sammy was thrilled. His folks were puzzled, but they let problems. Some of us, however, survive by listening foran- him go to the police station. swers from people in power. That's why one innocent man, Sammy was taken to an interrogation room in an isolated when put under pressure by an interrogator, finally said, "If area, far in the back of the station. He didn't come out until the evidence shows that I was there, and that I killed her, then early the next morningafter he had signed a confession for the I killed her. But I don't remember being there." murder of 13 year-old Jonathan Brooks. Later, he was convicted 2.Pleasing powerful people as a means toremove the even though no physical evidence tied him to the crime (Perske, pressure. An excerpt from an intermittent tape recording of 1991). Five things about this case continue to haunt me today: Johnny Lee Wilson's four-hour interrogation:

I'm haunted by the first thing Sammy said to his dad after 4Interrogator: "I told you it's importantthat you be coming out of the interrogation room: "Dad, you'll be straight with me. You took the thetape up there proud of me.I helped them solve the case." [meaning the duct tape usedon the murder victim]." I'm haunted by a tape recording of the interrogation that Johnny: "Huh?" kept going on and off. The detectives were vague about its malfunction. (Many tape recorders seem to go on and off Interrogator: "You took the tapeup there." like this in interrogation rooms.) Johnny: "I didn't have anything withme." I'm haunted by Sammy's corrections of misspelled words in the Interrogator (shouting): "WE HAVEGOT TO GET confession that had been written out by a policeman. Certain THE TRUTH OUT. ONLY THE TRUTH.WHERE DID. words were crossed out and corrected and initialed by Sammy YOU GET THE TAPE? DID YOU GETIT AT SCHOOL, even though he didn't read and write very well, let alone edit. OR DID YOU GET IT AT HOME, ORDID YOU BUY IT (This happens over and over again with vulnerable persons.) AT THE STORE? WHICH ONE OF THOSE?" I'm haunted by one thing a detective said when the tape re- Johnny (sheepishly): "I had itat home." corder was working: "Sammy, come on. Tell us, Sammy. Sammy, (Sonneborn, 1995). can't you say it? Sammy, you're my hero. Tell us how it went." I'm mostly haunted by the swearing contest between the fam- Continued on page 14 PAGE 13 BEST COPYAVAILABLE 47 TASHNewsletter,March 1999 CRIMINAL JUSTICE

The Utter Vulnerability of Persons With Mental him a trip to the interrogation room where they coerced a false confession out of him. A citizens group is now into its Disabilities In Police Interrogation Rooms eighth year trying to show the he couldn't even begin to Continued from page 13 commit the crime for which he was convicted. 3.Concrete thinking. "Why did you waive your Miranda rights?" 9.Short attention span and uncontrolled impulses. During has been asked of many who unwittingly did so. The most Johnny Paul Penry's trial, the prosecutor pointed at him and usual answer: "Because in the police station, you always wave at shouted that he was "not just a sociopath." He was worse the right. You don't wave at the wrong." For many, the deeper than that. He was "a vicious psychopath!" That would be meaning of Miranda is just too abstract for them to catch. enough to get most defendants grasping the defense counsel 4.Watching for clues pointing to the right answer. One can table until their knuckles became white. Not Johnny. In find transcript after transcript where all of the yes-and-no spite of the prosecutor's angry outburst, Johnny turned to answers were influenced by the way the interrogator posed watch a woman having a coughing fit in the audience. them. An excerpt from one of them: Propensities like these force one to look deeper at the Question:You did see John before hedied, fairness of getting confessions from people with mental disabili- didn't you? ties and to draw some fresh conclusions: Answer: Yes. Question:Your family said your werewith The Miranda warning does not necessarily protect them. persons with mental disabilities. Answer: Yes. For most of the people we work with,the Miranda warning is You couldn't have been withboth of Question: only a speed bump. "You have a right to a lawyer." (People who them? Which is it?(Silence) are being interrogated might think:* I don't need a lawyer. I didn't Question:Were you with your family or were you with John? do anything.) "You have a right to be silent." (I'll talk. I don't have anything to hide.) "Will you sign this waiver of your rights?" (Sure. Answer: With John. Question:Let's run that one by again, were you in special ed, I was taught that policemen are my friends). After with John or were you with yourfamily? the person signs the waiver sheet, the trap door snaps shut. Answer: Family. > Miranda rules do not necessarily stop terrorism in the (Sonneborn, 1995, p. 17) interrogation room. They do put an end to physical violence. But the psycho- This man worked so hard to give the answers the interrogator logical terrorism that often takes its place can be more devastat- wanted he gave up thinking about what he was actually saying. ing to the people we work with than the physical stuff. >.There is a difference between the honesty exhibited in 5.Bluffing greater competence than one possesses. The in- the interrogation room and the courtroom. terrogators testified that Johnny Paul Penry sounded compe- In the police station, in-your-face lying is an acceptable tool for tent to them.Even so, when defense attorney John Wright getting a confession. In the courtroom, every person testifying must put him on the stand and questioned him, the court learned swear to tell the truth, the whole truth, and nothing but the truth. that he couldn't read or write. He couldn't say how many The hardened criminal sees through the expected deception in the nickels were in a dime.When asked who was president, he police station, but the people we work with often do not. smiled knowingly and said, "Nixon," even though it was the Fair interrogations happen best in front of nonstop last year of Jimmy Carter's administration (Ellis & Rice, 1988). television cameras. 6.An all-too-pleasant facade. Herbert Welcome's smiles helped This means the sound and visual components are turned on to get him convicted. The interrogators claimed he did it be- when the suspect enters the room and the recording continues cause he lacked remorse. On the other hand, defense attor- until the suspect leaves. Then, and only then, can a judge and ney Judith Menadue stated: "Many people with mental retar- jury get a reasonable glimpse of what actually went on in the dation smile a lot. But this is related to retardation and not interrogation room.It doesn't mean turning the video camera remorse. They are anxious for approval, and have learned off to get some things "corrected," then turning it on again. that smiling is one way to get approval. But they don't have )1,- There is a primitive urge in all of us to kill scapegoats. the judgment to know when to smile." (Zehr, 1991). Most of us feel it and control it. The urge was present in 1693 7.A quickness for taking blame. Some of us are unable to Salem Village. In the minds of the Puritans, their community had understand when certain behaviors are blameworthy and become a vicious battleground between God and the Devil. So in an when they are not. Sammy Rafter thought that if he took effort to cleanse the community, 20 of the Devil's witches were killed. the blame for the murder of Jonathan Brooks, the police interrogators would like him. In 1694, many more were on their way to the gallows, but 8.Impaired Judgment. One prisoner used to walk up to people began to come to their senses. The cases against 49 other police officers repeatedly and ask if they had solved the accused witches suddenly melted like butter on a hot summer day. murder of one of his relatives. Then, since he liked talking It happened because "spectral evidence" was eliminated.That to officers, he asked if he was a suspect. That behavior got Continued on page 15 48 PAGE 14 TASH Newsletter, March 1999 IDEA REGULATIONS

The Utter Vulnerability of Persons With Mental Disabilities IDEA Regs Released In Police Interrogation Rooms Continued from page 14 BY MARCIE ROTH, DIRECTOR OF GOVERNMENTAL AFFAIRS AND PUBLIC POLICY, TASH meant that hysterical young maidens could no longer get others hung by saying they saw them flying through the air. n June 4, way, and there is Even so, Chief Justice William 1997, concern that the Stoughton was still filled to overflowing President questions to be with the need to cleanse the community Clinton signed the answered are by killing folk. So he signed the death Americans with posed in such a warrants for Elizabeth Johnson, Mary Disabilities way as to get Post and Elizabeth Wardwell. Education Act of answers that will Why? Because these three women 1997 (IDEA) into 1further fuel the were "feebleminded." They had not been law. The need to / arguments that convicted by "spectral evidence." They make changes in students with were picked out of the crowd as being the 23-year-old law disabilities are the slow. They were merely arrested and had been hotly real cause of the questioned until they confessed to being debated for almost two failures in America's witches (Hill, 1995, Starkey, 1949) full sessions of Congress ------classrooms. So when today's criminal justice The final product was seen by The final regulations for system fails to recognize the irrational many to be nothing more than another educating all children with disabilities urge to cleanse itself or its community by opportunity to delay the long overdue were published in the Federal Register killingif they fail to take into account work necessary to get the law imple- on March 12, 1999. There are sections this urge and harness itwatch out for mented and enforced in America's in the publication which cover: Effective what can happen in interrogation rooms. classrooms, because the changes would Dates of Regulations; Major Changes in It might be hard for them to con- now require a rewrite of the regulations the Regulations by Category, including front, question and get a confession from governing the new law. For many, this Free Appropriate Public Education, the governor of Illinois or the quarter- meant that the focus would continue to IEPs, Services to Children in Private back for the Chicago Bears. But God be on everything but the delivery of a Schools; Procedural Safeguards, includ- help all of the vulnerable people who quality education for every child. ing signficant changes in due process, may get taken into that room. When the proposed regulations for evaluations and eligibility; Discipline; implementation of IDEA were published and Frequently Asked Questions About Robert Perske is an author and prison almost 18 months ago, over 6,000 Discipline Under IDEA. worker. He can be reached at 203- comments were submitted to the US 655 -4135. Department of Education, Office for * * * * * * REFERENCES Special Education and Rehabilitative ne of the notable highlights Ellis, Virginia & Rice, Dale (1988). Services for consideration in drafting the "Retarded and sentenced to die." Dallas Times final regulations. includes language on Least Herald, September 11. When the public comment period Restrictive Environment, Hill, F. (1995). A Delusion of Satan. New 0 ended, a period of waiting ensued. including the following statement of York: Doubleday During this waiting period, a number of particular interest. Perske, R. (1991). Unequal Justice What Can Happen When Persons with bills and amendments were proposed by Retardation or Other Developmental Disabili- members of Congress that would further Least Restrictive Environment ties Encounter the Criminal Justice System. change the law (and result in a need for (LRE) Sec. 300.550 General LRE Nashville: Abingdon Press. additional rewrites to the pending requirements. Sonnebom, L. (1995). Unequal justice The Case for Johnny Lee Wilson. regulations). There was a flurry of activity at the end of the 105th Congress, (a) Except as provided in Sec. Philadelphia: Institute on Disabilities, Temple 300.311(b) and (c), a State shall University, a 23-minute film presentation. and one particular amendment was Starkey, M. L. (1949). The Devil in written into a study by the Government demonstrate to the satisfaction of Massachusetts. New York: Time Inc. Accounting Office (GAO). This amend- the Secretary that the State has in Zehr, H. (1991). "Who will defend Herbert ment discusses the impact of the effect policies and procedures to Welcome?" Akron: The Newsletter, Office of ensure that it meets the require- Criminal Justice, Mennonite Central Committee dangerous and disruptive behavior of fa. students with disabilities in America's ments of Secs. 300.550-300.556. 11111 classrooms. That study is now under- Continued on page 16

BEST COPY AVAILABLE PAGE 15 49 TASH Newsletter, March 1999 IDEA REGULATIONS

Sec. 300.552 Placements. Sec. 300.553 Nonacademic IDEA Regs Released settings. Continued from page 15 In determining the educational placement of a child with a disability, In providing or arranging for the including a preschool child with a provision of nonacademic and extracur- (b) Each public agency shall ensure disability, each public agency shall ricular services and activities, including ensure that meals, recess periods, and the services (1) That to the maximum extent and activities set forth in Sec. 300.306, appropriate, children with (a) The placement decision each public agency shall ensure that disabilities, including children each child with a disability participates in public or private institutions (1) Is made by a group of persons, with nondisabled children in those or other care facilities, are including the parents, and services and activities to the maximum educated with children who are other persons knowledgeable extent appropriate to the needs of that nondisabled; and about the child, the meaning of child. (Authority: 20 U.S.C. 1412(a)(5)) the evaluation data, and the (2) That special classes, separate placement options; and * * * * * * schooling or other removal of children with disabilities from (2)Is made in conformity with the As this issue of the TASH Newsletter the regular educational environ- LRE provisions of this subpart, goes to press, the regulations are barely ment occurs only if the nature including Secs. 300.550- three days old. The 400+ page docu- or severity of the disability is 300.554; ment needs to be carefully read and will such that education in regular be reviewed in detail in the next issue of classes with the use of supple- (b) The child's placement the Newsletter. In the meanwhile, you mentary aids and services (1)Is determined at least annually; can access the regulations at the follow- cannot be achieved satisfacto- (2)Is based on the child's IEP; and ing websites: rily. (Authority: 20 U.S.C. (3)Is as close as possible to the 1412(a)(5)) child's home; http://www.access.gpo.gov/su_ docs/aces/aces140.html Sec. 300.551 Continuum of (c)Unless the IEP of a child with a alternative placements. disability requires some other http://www.ed.gov/offices/ arrangement, the child is educated OSERS/IDEA/index.html (a) Each public agency shall ensure that in the school that he or she would a continuum of alternative place- attend if nondisabled; http://www.wrightslaw.com/ ments is available to meet the needs law/code_regs/ of children with disabilities for (d) In selecting the LRE, consideration special education and related is given to any potential harmful Index_IDEA Regs 990313.htm services. effect on the child or on the quality of services that he or she needs; and You can also order a copy for $8.00 (b) The continuum required in paragraph by calling the Government Printing (a) of this section must (e) A child with a disability is not Office at 202-512-1800 removed from education in age- or you can write to: (1) Include the alternative place- appropriate regular classrooms Government Printing Office ments listed in the definition of solely because of needed modifica- Superintendent of Documents special education under Sec. tions in the general curriculum. PO Box 37195-7954 300.26 (instruction in regular (Authority: 20 U.S.C. 1412(a)(5)) Pittsburgh, PA 15250 classes, special classes, special schools, home instruction, and The regulations are also available in instruction in hospitals and alternative formats. institutions); and Individuals with disabilities may obtain this document in other formats (2) Make provision for supplemen- (Braille, large print, audiotape, tary services (such as resource or computer diskette) on room or itinerant instruction) request by contacting: to be provided in conjunction Katie Mincey ([email protected]) with regular class placement. 'Director of Alternate Formats Center (Authority: 20 U.S.C. Telephone: (202) 260-9895 1412(a)(5)) f. PAGE 16 TASH Newsletter, March 1999 BEST COPY AVAILABLE 50 MARCH 1999

I. You Can Be the Teacher Who Has the Greatest Influenceon Someone's Life.

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PAGE 17 51 TASH Newsletter, March 1999 CALIFORNIA AT A CROSSROADS a/iotwia AT A CROSSROADS

BY TERRY BOISOT AND KIMBERLY OLSON, ALPHA RESOURCE CENTER OF SANTA BARBARA, CA

In June, 1998 a complaint was filed mental retardation to exercise self- country for elevating services and supports against Arc California by the Alpha determination and make vital for individuals with mental retardation. In Resource Center of Santa Barbara and contributions to the decisions made California, many remain loyal to the three other state chapters. The complaint about their own lives. organization because of these positions. was filed with The Arc of the United Local chapters of The Arc contribute daily States requesting expulsion of Arc The Arc of the United States did not to further these objectives. California from the national membership find sufficient evidence that: Alpha Resource Center challenged for failing to uphold the principles of The Arc California did not encourage the the state organization on behalf of Arc and failing to provide the leadership development of chapters, to advise 150,000 people with developmental necessary to ensure the highest quality of and support families and friends, disabilities living in California because life for individuals of all ages with and to coordinate and strengthen the over time we have seen the leadership in developmental disabilities. efforts and activities of these groups. our state lose its strength. It became The Arc of the United States re- Arc California does not accept the clear that too many hopes and dreams [of viewed the complaint and found it standards of quality as set forth in people with disabilities and their families] warranted further investigation of the the position statement of The Arc of were being lost. facts. The Arc of the United States held the United States. two fact-finding meetings in California Frustration with State Leadership on August 7 and 8, 1998. The meetings Arc California adamantly maintains a Grows were open to all wishing to speak in position of 'not guilty' on all charges filed For more than three years the Alpha support or against the complaint. by the complainants. The Arc California Resource Center Systems Advocacy After review of the evidence, on Governing Board has argued that their Committee addressed concerns within October 6, 1998 The Arc of the United activities over recent years have been our local community and throughout the States found merit in five of the seven focused on 'choice' for all. The reality State of California. We witnessed our own charges alleged by the complainants. and the perception throughout the local advocacy hampered by positions The Arc of the United States found disability community, the general public, taken by our state leadership, and our evidence that: and in governmental agencies is that Arc state advocacy efforts were crippled by California is aggressively pursuing the viewpoints that were different from our 1. Arc California Governing Board continuation of large congregate settings state organization. actively works and advocates against to the exclusion of, and ultimate harm to, We needed to look at our shared the constitution, bylaws and position individuals who choose to live in the vision for our own community of Santa statements of The Arc of the United community. Barbara, our state of California, and our States. Following is a summary highlighting nation. Our objective now and in the 2.Arc California has not promoted the the events that compelled our agency, Al- future has been aimed at building general welfare of people with pha Resource Center, and three other state communities that will welcome everyone, mental retardation of all ages. chapters to bring a complaint against Arc anywhere, at anytime. 3.Arc California does not reinforce the California, the largest family-based advo- Mark Polit, a parent and an advocate, belief that all "people with mental cacy organization in California. testified at the fact-finding hearings on retardation have the right to make August 7. He said, "California Arc has choices for themselves, have maxi- Background exerted leadership to stabilize the mum control over their lives, and ... More than 40 years ago, founding population of large state institutions and be supported in making a contribu- families of the Arc movement were the educate the public that people with tion to their community." first to take a stand against institutional severe and profound disabilities need to 4.Arc California does not promote the care and advocate that community is the be protected from their home communi- right of all people to be included in rightful place for people with develop- ties. California Arc has educated the their communities. mental disabilities to live, learn, play and public to the limitations of people with 5.Arc California does not acknowledge work. Since its inception, The Arc has disabilities and not their strengths, their the rights of all individuals with been a powerful force throughout the Continued on page 19 PAGE 18 5 2 TASH Newsletter, March 1999 BEST COPY AVAILABLE CALIFORNIA AT A CROSSROADS

California at a Crossroads The President of Arc California wrote Individuals speaking at the fact Continued from page 18 to Mr. Abbot, "As President of Arc Califor- finding meetings in opposition to the nia, I find myself in a very difficult posi- complaint continued to defend the vulnerability and not their aspirations, tion.I am a firm believer in maintaining a actions of Arc California and did not their failures and not their potential." strong national organization, but I know refute our allegations. Those speakers From these discussions we generated that my board will find it impossible, as do included a lobbyist for the California a resolution that said Arc California will I. to reconcile supporting an organization Association for State Hospital Parent "aggressively advocate for community whose goals seem to be in direct opposi- Councils for the Retarded (CASH-PCR), alternatives to large congregate living tion to both our mission statement and our the attorney representing Arc California, centers...." This resolution was presented position on inclusion."The Governing Dr. Cable from Fairview Developmental in January, 1998; and subsequently Board of Arc California voted to commend Center, and Dr. David Strauss, a statisti- rejected at a March 5 meeting. It was the the President for her letter. cian whose mortality studies are well opinion of the Arc California's Governing known. Board that the resolution intended to Alpha Resource Center and After much deliberation the execu- close developmental centers and was in Other Advocates Take Action tive committee of Alpha Resource Center conflict with the Arc California's Position At this point, Alpha Resource Center made the decision to recommend to our on Choice. felt it could no longer spend time and board and membership to withdraw from Dave Denniston, a parent, an Alpha energy to influence the leadership of Arc Arc California, although this meant we Resource Center board member, and California, nor could it remain a silent would forfeit our membership in The Arc chair of the Systems Advocacy Commit- party to an organization that fails to of the United States. Simultaneously we tee, testified during the August fact- embrace a vision of the future in which requested The Arc to revisit their bylaws finding meeting that, "We were told by a all individuals are valued members of which prohibit independent affiliation number of Arc California board members their community. Alpha was not alone in when a state chapter is in existence. The that the resolution would pass if we its frustration. Arc of the United States responded by would only remove the reference to large, Bruce MacKenzie a parent and a saying, "...it is my belief and that of the congregate living centers. We refused, founder of CASA, a family-based advo- other officers that such a change may not believing that the money and effort spent cacy organization, submitted written be the most effective way to deal with the on developmental centers was necessary testimony to the fact-finding team from problem. Further, we think it would as a reference pointa basis for compari- The Arc of the United States. In part it likely create so many other problems, son of institutional versus community reads, "CASA came into existence in that it is not a viable route. Your supports. Without that point of refer- September of last year [1997] when we chapter's complaint, as we understand it, ence, we believe it just would have been grew weary of the fact that there was no appears to lend itself to the filing of a business as usual for Arc California." statewide parent/families/consumers formal complaint against your state During the same meeting on March advocacy organization that spoke in chapter...." 5, we became aware of a letter dated Sacramento for the community families Within a few days Alpha Resource February 27, 1998 from the President of and consumers. Arc California has not Center received calls from three other Arc California to Quincy Abbot, President represented our families and children for local chapters supporting our position. of The Arc of the United States. This several decades. We thought it was time Under a common vision, the four letter was in response to Mr. Abbot's to form our own group to perform the chapters worked as a team and developed "President's Perspective" in the Winter of advocacy that Arc California has failed to a strategy. One team researched and 1997 edition of "The Arc Today". do for so many years." documented complaint allegations, the The President's Perspective article The testimony of Bill Coffelt, parent other team developed the constitution said, "The Arc's individual Position and a founder of The Oaks Group that and bylaws for a new family-based Statements on Family Support, Educa- spearheaded the Coffelt v. DDS litigation statewide advocacy organization. From tion, Employment, Where People Live, that resulted in development of commu- this group was born The California Recreation and Leisure, and Availability nity living arrangements for thousands of Alliance for Inclusive Communities of Community Services and Supports all Californians said it best, "...it should come (CAIC), advocating with and on behalf of carry forth the same theme: Inclusion. as no surprise that I, as a member of The people with developmental disabilities All people with or without mental Arc of the United States and President of and their families. retardation have the right to be fully The Oaks Group, an organization formed In part the mission statement reads: included in their diverse communities. solely to counter the positions and "The California Alliance for Inclusive Our movement to eliminate segregation resolutions of Arc California, would stand Communities is a statewide family based wherever it occurs will continue. Resi- before you supporting this complaint. organization that is committed to dential institutions, sheltered workshops, However, I feel that the most compelling advocating for high quality community- segregated schools, segregated classes testimony justifying expulsion of Arc based services and supports for individu- within regular schools, segregated leisure California will come from Arc California als with developmental disabilities and programs - all must go." supporters themselves." Continued on page 20

PAGE 19 53 TASH Newsletter, March 1999 CALIFORNIA AT A CROSSROADS

California at a Crossroads Continued from page 19 ARC CALIFORNIA AGREES TO: their family members throughout the 1. Rescind the letter dated February 27, 1998sent to Quincy Abbot, President of individual's life span."This mission The Arc of the United States. statement represents the commitment we 2. Go on record to work toward implementation of theposition statements of The had been unable to obtain from the Arc Arc of the United States. California Governing Board. 3. Work with The Arc of the United States to initiatea waiting list campaign for California. An Agreement Is Negotiated 4. Make community-based support and services the highestpriority for Arc Califor- On October 7, 1998 The Arc of the nia, to publicly announce this priority and to workto sponsor and support United States, Arc California, Alpha specific legislation to foster high quality community-basedservices for people with Resource Center and the three state mental retardation and their families. chapters negotiated an agreement that 5. Initiate a program to foster self-determination for people withmental retardation would facilitate significant changes living in California. within Arc California. Arc California 6. Actively pursue and support the California advocacyprogram for people with faced expulsion from The Arc if the mental retardation living in developmentalcenters to facilitate movement to agreement was not ratified by its govern- community-based services consistent with their IndividualProgram Plan. ing board. On November 7, Arc Califor- 7. Publicly announce the end of the moratorium and reaffirmits commitment to nia Governing Board ratified the agree- community-based services and supports. ment as follows: Re-examine its role as plaintiff in the Richard S. lawsuitusing new information and analysis regarding the issues of thecase. PREAMBLE: 9. Develop a plan for improving the governance of Arc Californiausing an external Arc California recognizes the impor- consultant with expertise in organizationalmanagement and models of gover- tance of The Arc of the United States' nance of other state chapters of The Arc. This plan should include: position statements in setting the national a. a way to reduce the size of the Board of Directors basedon the proportion of agenda for people with mental retardation the state's population of persons with mental retardation; and their families. b. term limits for board members; Arc California reaffirms its commit- c. regular and on-going board development; and ment to the general welfare of people with d. methods to ensure that all local chaptersare vested in Board deliberations mental retardation of all ages and recog- and that minority voices are heard. nizes that this is the essence of all of The 10. Send two Arc California board membersto the 1999 leadership training session. Arc's activities. 11. Seek approval of the agreement by the Arc California Boardon or before Novem- Arc California recognizes and regrets ber 15, 1998 and communicate this approvalto The Arc of the United States that some local chapters feel disenfran- President on or before November 25, 1998. A representative ofThe Arc of the chised. Arc California recognizes its United States will be present at the Arc California boardmeeting to discuss this responsibilities as a state chapter to agreement. welcome and work with local chapters. 12. Submit a progress report to The Arc of the United StatesPresident on compliance Arc California will work in good faith to with the above on January 15, 1999. Appropriateon-going follow-up will be resolve the issues raised by the local chapters determined by The Arc of the United States Board ofDirectors. and ensure that all member voices are heard, 717..ling17,11.7.7.011.-,.732,..*JSCPSIMP1.70,7367. considered and respected in the deliberative process of the Board of Directors. statements of The Arc. The Alpha again, serving on the governing board Resource Center will work in good faith and on the implementation committee. Arc California will continue to face with Arc California in implementing the expulsion from The Arc if it fails to work agreement by becoming members once in good faith in its performance of the agreement. The Arc has given us hope that California is now in a position to Terry Boisot is President of Alpha Resource Center of Santa Barbara and has served on the Board build a powerful force advocating for and of Directors since 1993. Prior to that, she served as a advisory member to the Family Resource "securing for all people with mental Center, a parent network and resource center. Terry is a parent to Michelle, age 12 and Ben, age 9. Ben is deaf, blind, and developmentally and physically disabled. retardation the opportunity to choose and realize their goals of where and how they Kim Olson is Executive Director of Alpha Resource Center of Santa Barbara. She has been learn, live, work and play". We hope Arc employed by Alpha for 20 years. Kim currently chairs an advisory committee to the Tri-Counties California will rally behind the philoso- Association for the Developmentally Disabled and is also a board member of the Central Coast Assistive Technology Center. Kim recently resigned her position as president of the California phy built into the agreement and work in Conference of Executives of the Arc due to the complaint filed against Arc California. a united way to promote the position

PAGE 20 5 4 TASH Newsletter, March 1999 BESTCOPYAVAILARIP ckt,ck6%,%, EDUCATION CORNEReeeee Developing a Shared Understanding: Paraeducator Supports for Students with Disabilities in General Education

BY MICHAEL F. GIANGRECO, EILEEN CICHOSKIKELLY, LINDA BACKUS, SUSAN W. EDELMAN, PRISCILLA TUCKER, STEVE BROER, AND CHRISTOPHER CICHOSKIKELLY; CENTER ON DISABILITY &

COMMUNITY INCLUSION-UNIVERSITY OF VERMONT; AND PAM SPINNEY, FAMILY & EDUCATIONAL SUPPORT TEAM, VERMONT DEPARTMENT OF EDUCATION leArairm

Introduction initial step that must be followed by from educational literature and research. effective planning, implementation, and In presenting the following set of In order for groups of people to evaluation if the aspirations of the team statements it is not our intention to become effective teams it is vital that are to be realized. suggest that these are the only, best, or they develop a shared understanding What constitutes an appropriate level correct components to be included. of the underlying beliefs, values, and of training to be an effective para- Rather we present them as our thoughts principles that will guide their work educator' is currently a topic of national at this point in time, with the knowledge together. This shared understanding debate. However, there does seem to be that they have changed since we first evolves over time as members learn about widespread consensus that some level of drafted them and we expect that they will each other, spend time together, and orientation and training is required for continue to evolve. We hope that they engage in the work of their group. individuals to be effective paraeducators. will be helpful to other groups who are Having a shared understanding While some states have developed interested in paraeducator issues and provides a basic structure within which standards for paraeducators or enacted foremost are interested in quality teams: certification requirements, many have education for all students. In this context develop common goals; not. Under the provisions of IDEA, it is they can be used as a starting point in determine actions that will lead the responsibility of each state and local developing a shared understanding toward the attainment of their goals; education agency to ensure that "quali- among the people in your own setting. ensure that their actions are consis- fied personnel" are working with students Ask yourself what you think about tent with their beliefs; and in their schools. the items we have listed. How might you judge whether their efforts have been This article lists a set of statements reword them to reflect your own collec- successful. that reflect the shared understanding of tive thoughts and match your own the authors regarding paraeducator situation? Are there any you would In essence, having a shared under- supports for students with disabilities in delete or add to those listed here? The standing helps team members develop general education classes. This shared set of statements included in one's shared their collective vision of the direction in understanding is based on our collective understanding can also be used as a which they would like to head. There- personal and professional experiences as. practical tool.It can help teams identify fore, a shared understanding is a state- parents, community members, advocates, and prioritize their needs by collecting ment of what is aspired to, rather than paraeducators, teachers, special educa- facts about the status of each component necessarily what currently is. In seeking tors, related services providers, and of the shared understanding using a self- to establish the what, prior to the how, administrators. We have combined those assessment format. An action-planning developing a shared understanding is an experiences with what we have learned Continued on page 22

' Throughout the remainder of this article you will notice that we have used the generic term "paraeducator" to refer to individuals who are trainedto work with, and alongside, educators in classrooms and other educational settings to support the education of students with and without disabilities in a variety of capacities (e.g., physically, socially, instructionally). Paraeducators are school employees who, while not hired to work in the capacity of a professional position (e.g., teacher, special educator, related services provider), do provide important supportive services in schools under the direction and supervision of qualified school personnel. We recognize that the terms used to refer to these school personnel vary widely and often are used interchangeably (e.g., teacher assistant, teacher aide, instructional assistant, program assistant, educational technician, job coach).Individuals with these various job titles are referred to in the Individuals with Disabilities Education Act (IDEA) as "paraprofessionals." We support the use of locally adopted job titles that are descriptive of the work done by these school personnel and which are designed to establish or increase respect for individuals who are providing these vital educational supports to students. PAGE 21 55 TASH Newsletter, March 1999 %%Wk,%, EDUCATION CORNER 00000

Developing a Shared (e.g., supporting students with and reduce burn-out (e.g., variety of challenging behaviors; approaches to duties; interpersonal dynamics; indi- Understanding literacy; use of technology; needs of vidual skills and interests; longevity Continued from page 21 students with low incidence disabili- with a particular student). process that includes this application of a ties) and have input into what 14. Paraeducators should have an shared understanding is currently being training they need. accurate job description that outlines developed and field-tested by staff at the 7. Paraeducator training experiences their roles and responsibilities. This Center on Disability and Community should be designed to allow indi- job description should be commen- Inclusion in conjunction with the viduals to gain continuing education surate with the paraeducator's skill Vermont Department of Education and or college/university credit. level as it pertains to students both local schools. with and without disabilities. Hiring & Assigning 15. Paraeducators should be compensated Acknowledging Paraeducators Paraeducators in accordance with their level of edu- 1. Paraeducators should be considered 8. Practices should be established to re- cation, training, experience, and skills. members of the educational teams for cruit, hire, and retain paraeducators. the students with whom they work. 9.Substitute paraeducators should be Paraeducator Interactions with These teams typically consist of the recruited and trained to ensure that a Students & Staff student (when appropriate), the student's access to education and 16. Paraeducators are expected to student's parents, teachers, special participation in his/her educational demonstrate constructive interper- educators, and others as needed on an program is not unduly disrupted sonal skills with students and other ongoing or situational basis (e.g., when the regular paraeducator is team members (e.g., use respectful related services providers, school unavailable due to occurrences such communication when speaking with nurse, bus driver, mentors with as illness, injury, personal leave, or or about others; maintain confidenti- similar disabilities as the student). professional development. ality; ensure dignity when providing 2.Paraeducators provide important 10. Each school should have an agreed personal care). services that influence student upon team process and criteria for 17. Paraeducators should develop and learning, social/emotional develop- determining whether paraeducator demonstrate attitudes and work ment, and inclusion. support is needed for students with habits that encourage student 3.Paraeducators should be valued, disabilities to receive an appropriate independence; foster appropriate appreciated, and recognized for their education. interdependence; promote inclusion unique competencies, hard work, 11. When paraeducator support is and peer interactions; enhance each and contributions to the classroom, determined to be necessary for a students' self-image; and prevent the school, and community. student, a written plan should unintended negative effects often explicitly clarify the nature and associated with the potential over- Orienting & Training extent of the support and explain involvement and proximity of adults. Paraeducators how it is referenced to the student's 4.Paraeducators should receive educational program (e.g., IEP goals, Roles & Responsibilities of orientation (e.g., information about general education curriculum). Paraeducators the student, classroom, and school) 12. In most circumstances it is advisable 18. Within the classroom, on a day-to- and entry-level training prior to to assign paraeducators to class- day basis, the classroom teacher is working directly with students (e.g., rooms or instructional programs the instructional leader and interacts family-centered principles; rather than to an individual student. directly on an ongoing basis with multicultural and other diversity In the rare cases when a students who have disabilities. issues; teamwork; inclusive educa- paraeducator is needed for an Paraeducators, under the direction of tion; roles and responsibilities of individual student, efforts should be the teacher and special educators, team members; principles of made to ensure that paraeducators function as vital support to students learning, to name a few). provide supportive, rather than under the direction of the teacher 5. Paraeducators should receive primary or exclusive, services. and special educators. ongoing, on-the-job, training to 13. When administrators make work as- match their specific job responsibili- signments and re-assignments to meet 19. Teachers, special educators, and related ties and assignments. students' educational needs, it is ad- services providers (e.g., speech/lan- 6.Paraeducators should have access to visable to gain input directly from guage pathologists, physical therapists, ongoing learning opportunities, in paraeducators and other team mem- occupational therapists, school psy- addition to their on-the-job experi- bers (e.g., parents, teachers, special chologists) have the ultimate respon- ences (e.g., workshops, courses, educators, related services providers) sibility for ensuring the appropriate intemet study), that promote their to understand factors that may influ- design, implementation, and evalua- skill development in relevant areas ence job performance, job satisfaction, Continued on page 23 PAGE 22 36 TASH Newsletter, March 1999 cttAtckt,%% EDUCATION CORNER 060L690,0

Developing a Shared 27. When a student is receiving support 28. School districts should develop ways from a paraeducator, an evaluation to evaluate the impact of Understanding plan should be established to paraeducator services on individual Continued from page 22 determine, if possible, how and students, classrooms, and staff. tion of instruction carried out by when paraeducator services can be For additional information on the points paraeducators. faded through increased student highlighted in this article, visit the 20. Paraeducators should be informed independence or replaced by more following websites: about the educational needs (e.g., naturally occurring supports (e.g., IEP goals and objectives; compo- classroom teacher, peers). http://www.uvm.edui-uapvt/parasupport/ nents of the general education http://www.uvm.edui-uapvt/paraprep/ curriculum) and characteristics of the students with whom they work, References as well as classroom and school Doyle, M.B. (1997). The paraprofessionals guide to the inclusive classroom: Working as a team. Baltimore: Paul H. Brookes. practices and routines. French, N. (1998). Working together: Resource teachers and paraeducators. Remedial 21. Paraeducators should have opportu- and Special Education, 19, 357-368. nities to contribute to the develop- French, N., & Pickett, A.L. (1997). Paraprofessionals in special education: Issues for ment of the educational program, teacher educators. Teacher Education and Special Education 20(1), 61-73. instructional plans, and activities Giangreco, M.F. (1996). Vermont interdependent services team approach: A guide to coordinating educational support services. Baltimore: Paul H. Brookes. created by each student's educational Giangreco, M.E, Edelman, S., Luiselli, T.E., & MacFarland, S. (1997). Helping or team, but should not be given sole hovering? Effects of instructional assistant proximity on students with disabilities. responsibility for these and related Exceptional Children 64, 7-18. activities. Hall, L.J., McClannahan, L.E., & Krantz, PI (1995). Promoting independence in inte- 22. Some of the primary functions of grated classrooms by teaching aides to use activity schedules and decreased prompts. Educa- tion and Training in Mental Retardation and Developmental Disabilities 30(3), 208-217. paraeducators are to: support the Hilton, A., & Gerlach, K. (1997).Employment, preparation and management of implementation of instructional paraeducators: Challenges to appropriate services for students with developmental disabilities. programs; facilitate learning activi- Education and Training in Mental Retardation and Developmental Disabilities, 32, 71-77. ties; collect student data; and carry Jones, K.H., & Bender, W.N. (1993). Utilization of paraprofessionals in special educa- out other assigned duties (e.g., tion: A review of the literature. Remedial and Special Education 14, 7-14. Miramontes, O.B. (1990). Organizing for effective paraprofessional services in special edu- supervise students at lunch or recess; cation: A multilingual/multiethnic instructional service model. Remedial and Special Educa- provide personal care supports to tion, 12, 29-36. students; do clerical tasks) based on Pickett, A.L., & Gerlach, K. (1997). Supervising paraeducators in school settings: A plans developed by the teachers and team approach. Austin, TX: Pro-Ed. special educators. Reinoehl, R.B., & Halle, J.W. (1994). Increasing the assessment probe performance of teacher aides through written prompts. Journal of the Association for Persons with Severe 23. Times and mechanisms should be Handicaps, 19, 32-42. established to allow opportunities for Salzberg, C.L., & Morgan, J. (1995). Preparing teachers to work with paraeducators. paraeducators to be oriented to Teacher Education and Special Education, 18, 49-55. teacher's plans, report on student Storey, K., Smith, DJ., & Strain, P.S. (1993). Use of classroom assistants and peer- progress, ask questions, and offer mediated intervention to increase integration in preschool settings. Exceptionality, 4, 1-16. their perspectives.

Supervision & Evaluation of Project staff wish to thank the following people for their feedback on this article: Gwen Paraeducator Services Beegle, Susan Cano, Chigee Cloninger, Mary Beth Doyle, Nancy French, Sharon 24. Paraeducators should receive ongoing Henault, Barbara Hylind, Ginny Iverson, Jan Keifer, Rorie Lackey, Cathy Quinn- supervision and regular performance Malgeri, Pat Mueller, Frank Murphy, Anna Lou Pickett, and the Vermont NEA evaluations which are based on their Paraeducator Task Force. job descriptions and apply clearly defined processes and procedures. Support for the preparation of this article was provided by the United States Department 25. Supervisors of paraeducators (e.g., of Education, Office of Special Education and Rehabilitative Services under the funding teachers; special educators) should be trained in effective supervisory categories, Model Demonstration Projects for Children and Youth with Disabilities, CFDA 84.324M (H324M80229), and Personnel Preparation to Improve Services and Results for practices through preservice, Children with Disabilities - Models of National Significance, CFDA 84.325N inservice, or graduate training. (H325N980022) awarded to the Center on Disability and Community Inclusion at the 26. Paraeducator services should be considered in school and district-level University of Vermont. The contents of this paper reflect the ideas and positions of the authors and do not necessarily reflect the ideas or positions of the U.S. Department of Education; school improvement action-planning therefore, no official endorsement should be inferred. to ensure that appropriate services are available and effectively utilized.

.e BEST COPY AVAILABLE PAGE 23 5? TASH Newsletter, March 1999 MARCH 1999

SUPPORTED EMPLOYMENT TASH wishes to MANAGER acknowledge the generous

Progressive Oakland, California non-profit serving support of our A people with developmental disabilities seeks Manager to start supported employment service. Must have newest lifetime member experience in the provision of individualized support services to persons with disabilities, job development, Sandra Davidson job training and support strategies. Must also have experience supervising employees and developing Lifetime membership entitles you to program budgets. full international and chapter member Requirements: benefits for your lifetime. The cost can be Bachelor's and a minimum of 5 years experience. Position is full time. Salary $35K plus benefits. remitted over several monthly payments. If you are interested in becoming Send resume and cover letter to: a lifetime member of TASH, contact East Bay Innovations, Attn: Tom Heinz, 440 Grand Avenue, Suite 425, Oakland, CA 94610 Rose Holsey at 410-828-8274, ext. 100. or fax to: 510-832-1306.

The University of Creating Possibilities Washington Graduate Program The Difference Social Role Valorization Makes trains teachers to serve the needs Boston Univemity June 1-4, 1999 of pupils with significant disabilities. Emphasis on data-based, systematic tliAn international panel ofwell-knovvn figures in the disability field will explore the impact and practioal instruction referenced to the requirements 'applicationof Social Role Valorization in lives and of natural school and community settings. work The conference will interest family members, M.Ed. degree plus initial teacher persons with disabilities, service providers, educators, certification possible. journalists and policy malcers. Contact Dr. Felix Billingsley Cast: tuition $225.00 before 3/1 5/99 $275.00 before 5/15/99 Area of Special Education $325.00 after 5/15/99 102 Miller Hall, Box 353600 Rooms & lodging at BU: $33/sgt or $40/dblfnight University of Washington * Meal plat available Seattle, WA 98195 "For information contact the Consortium Registrar at (206) 543-1827 413.5362401 ext 5520 or the &RV Homepage at htipi/www. e-mail [email protected] t SRV21centuty.com

BEST COPY AVAILABLE PAGE 24 58 TASH Newsletter, March 1999 DISABILITY HUMOR

How often have We typically begin by you heard saying that as advocates someone tell a DISABILITY for people with disabili- joke about disabilities ties, we share two /and not known what to HUMOR: underlying assumptions: say? Have you ever been (1) we are committed to unsure whether disability MOVING ending oppression of people Ogg humor was oppressive or with disabilities and to liberatory? Have you found BEYOND educating the public about disability isways to laugh about and around disabil- sues; and (2) we believe humor can be ex- ity issues that feel good to you? "THAT'SNOT tremely helpful and that it is extremely im- Our work in this area originated at a portant to be able to laugh and not take dis- TASH conference in 1995. One of the ability too seriously. We feel that humor can evening events featured the work of two FUNNY!" and should be part of the educational and performers/comedians. Mara (co-author advocacy work that we do. of this article) was asked to function as BY MARA SAPON-SHEVIN AND ROBIN SMITH the Emcee. The first performer, Cheryl Categories of Jokes Marie Wade, shared an incredibly people with disabilities and those of This project has led us to collect as powerful performance piece featuring her different ethnic and racial groups? As many examples of disability humor as we poetry, movement, singing and someone who has committed my life to could find. We searched the Internet, storytelling related to growing up as a ending oppression in general and periodicals and newspapers, and in- disabled woman in society. handicapism in particular, this was an cluded within our purview cartoons and The second performer was a come- incredibly difficult moment. I exchanged jokes (including some cartoons and dian, a young man who uses a wheelchair worried and questioning glances with phrases printed on T-shirts by Dan following an automobile accident. Some others in the audience who wondered Wilkins). Although our search has by no of the comedian's jokes were about the what to do as well and clearly wondered means been exhaustive or even system- oppression of people with disabilities or what I would do in this situation. atic, after reviewing many examples of made note of humorous/ironic moments jokes and cartoons about disability issues, in the lives of people with disabilities. Robin: I've told Mara that the we have identified five general categories. For example, "I go into the restaurant in evening's real entertainment was watching These are not mutually exclusive, and my wheelchair, and there's a sign that her squirm. What I didn't share with her often a joke or cartoon fits in more than says 'PLEASE WAIT TO BE SEATED', was that I also felt joy that I wasn't the one place. Nonetheless, this sorting and I wonder am I going to get in emcee. As a person who has struggled system has allowed us to raise issues in a trouble?" Unfortunately, much of the with, and sometimes successfully helpful way. For each of these categories, humor was problematic the come- interrupted such "humor," I had no idea we will explain how we define it, give a dian made fun of people with Asian what to do or how to do it. Could I few examples, and then talk about the names, fat people, different ethnic stand up and say, 'Something isn't right effects and/or uses of this kind of humor. groups and people "so retarded" they here ..." or "Let's talk about this?" couldn't read the seat pocket informa- After the presentation, we (the 1. Political/Consciodsness Raising: tion on the plane. The several people in authors) talked at length. We wondered Jokes in this category are those which can the audience who carried that label were why people laughed, especially in an help the audience to understand any of the butt of his jokes. Many people in audience full of advocates and self- the political, economic or values issues the audience laughed; others looked advocates on disability issues. What associated with disability. These jokes are very uncomfortable. distinguished the jokes we liked from rarely in the "ha ha" category, but are those we didn't? Why was there not more likely to lead to a sharp intake of We both had a hard time with general agreement that the put-downs breath and an "aha - I never thought the experience: weren't funny? And, most importantly, about it that way." Mara: As emcee, I was what should we do about it? We decided For example, one very troubled. What that although we were unable to change cartoon shows a combi- should I do? Should I that evening's event, we could take on the nation electric chair/ stop the performance issues of disability humor at future TASH wheelchair with the and use a hook to meetings and elsewhere. Since then, we text: "Kevorkian! remove the comedian? have presented on this topic several Electric Wheelchair Should I simply stand by times, for various audiences, learning Company....When you and be party somehow to more with each presentation. This article need us... We'll be Wig the oppression of people in shares some of our insights about the there" (Scott Chambers,PEW the audience as well as other uses and abuses of disability humor. Continued on page 26 5-9 PAGE 25 TASH Newsletter, March 1999 DISABILITY HUMOR

DISABILITY HUMOR: joke is in some ways at the expense of 3.Another joke in this category: people with disabilities. For example: MOVING BEYOND Question: "Why did the blind man give Q: "What do you call an armless person "THAT'S NOT FUNNY!" up sky diving?" Answer: "It scared the floating in the water? Continued from page 25 hell out of his dog." A cartoon from A: Bob. Accent shows a couple in wheelchairs Q: .. .Cooking on the grill? Mouth magazine). For those unfamiliar contemplating the ramp and access A: Patty. with the debate about the ways in which symbol at Lovers' Leap. Jokes/cartoons in Q: . . Hanging on the wall? the assisted suicide movement is very this category support a discussion of A: Art." worrisome to people with disabilities (the ways in which people with disabilities Some of the old Helen Keller jokes also Not Dead Yet Movement is an example of should and can be included in the fall into this category: that position), the cartoon allows us to "normal" range of vocational, recreational Q: "What did Helen Keller do when the explain the dangers of "helping" people and intellectual pursuits. house caught on fire? with disabilities to kill themselves as A: She screamed her hands off." Discuss- opposed to fighting for adequate housing, 4.Challenging Stereotypes and ing jokes in this category allows us to health care, employment, friendship and Assumptions: We include here jokes ask, "Why did we laugh?" "What is it community services. which provoke the audience to recon- about this topic that makes us uncom- Another cartoon in this category is sider their beliefs and assumptions about fortable?" "How might we work on that pictured on a T-shirt by Dan Wilkins. It people with disabilities, the ways in discomfort?" shows a wheelchair symbol wearing an which services are provided, the language Indian headdress with the logo "Camp which is used in describing them, and so 6.Veiled Vile: Entries in this category Can't-Feel-My-Legs" and reads: "A special on. One cartoon, for example, shows a are very close to hate speech. Often these place for folks who are quite severely giant pencil standing on the street corner jokes or cartoons use the medium of buggered up, i.e. those with spinal cord holding a cup full of blind people in one "humor" to share vicious, hostile and injuries, ms, md, spina bifida, cp, post- hand and a fistful of dollars in the other. often deadly information about people polio, circulatory problems, and amputa- The cartoon asks us to think about with disabilities. For example, on list tions (except those who think they can charity models of providing for people reads: "Why Beer is Better than Retarded feel their legs), aw heck, them too." In with disabilities through the irony of the People" and includes the entry, "Beer some ways crude, this cartoon raises the giant pencil. doesn't have to be sterilized." Another politics of special segregated recreational In another cartoon from Accent, a entry is a web site about midget throwing opportunities for people with disabilities person in a wheelchair waits on the which includes the comment, "The and promotes a discussion of how and corner for the light to change. There are creator of this site hates midgets. As such where we serve children with disabilities. two light-up signs; one says "(DON'T) this web site reflects this.If you are a Cartoons or jokes in this category can be WALK," the other, "(DON'T) WHEEL." midget or dwarf, or you conspire with used to help people become more aware Another cartoon shows a man on a desert midgets and dwarves, then you will NOT and better advocates. island who has spelled out, with rocks, enjoy this site. So my advice to you is "HLEP." A helicopter is passing overhead LEAVE NOW! GO AWAY! If you go 2.Normalizing: Jokes or cartoons in and one of the pilots says to the other, "I beyond this disclaimer you will probably this category are those which encourage can't make it out either; let's go home." be offended." the audience to understand that people Although at first glance this cartoon Attitudes or beliefs like this would be with disabilities are "real" people, typical might appear to be making fun of people unacceptable to most people, but because in many ways, and with most of the same who are dyslexic or illiterate, we have they are couched as "humor" they are interests, desires, strengths and weak- used this cartoon to initiate a discussion considered, somehow, more acceptable. nesses of people without disabilities. For of the ways in which communicative Exploring "humor" in this category allows example, one cartoon by John Callahan competence involves the repertoires of us to discuss the ways in which humor shows an after-hours restaurant in which both the "speaker" and the "listener." against a particular group is often the first the chairs have been turned upside down Learning to understand people whose step in an escalating program of hatred on the tables. At one table, four wheel- communication is non-standard or and violence (for example, cartoons chairs have been turned upside down difficult is an important ethical and about Jews in pre-Hitler Germany). We with their users still in them! The pedagogical issue. We can ask, "In this can talk about the ways in which humor caption reads: "When Quads Won't cartoon, who had the real problem? Who can be dangerous and, if left unchecked, Leave." Although not everyone agrees needs to change?" can desensitize people to the oppression that this joke is funny, it does allow the and real dangers of the oppression. audience to think and talk about the fact 5.Cheap Laugh: Jokes/cartoons in this that people in wheelchairs do go to bars, category are those at which we laugh do have fun, and can also be resistant and often because they are clever and then problematic just like other people! realize, perhaps only much later, that the Continued on page 27

PAGE 26 6 0 TASHNewsletter,March 1999 DISABILITY HUMOR

DISABILITY HUMOR: people: "I used to think that way that?"; "I don't get it (with a puzzled MOVING BEYOND (make those remarks) but then I look)." Force the person to explain or made friends with someone who retell what they said. Often they will "THAT'S NOT FUNNY!" (state the disability) and found out realize they've said something Continued from page 26 how much they were hurt by that"; "I inappropriate. Hold the joke teller to have some friends with that label and a high standard: "I know you to be How Can We Tell What's Funny? they are struggling not to apply all the such a caring person who would In trying to decide how we feel about insults to themselves that the culture never hurt someone; do you know specific jokes and engaging the audience puts out." You might want to indicate how hurtful that remark is?" Punish- in that discussion, we have found it that you are close to someone just ment and guilt are not generally helpful to ask several questions. insulted and so feel hurt yourself. effective. There are times when "Don't say that around me" is a useful 1. In the presence of a person with this Engage the person in a dialogue: and viable option, but save this as a disability, would you feel comfortable Ask the joke teller a question about last resort unless you're in a situation sharing this joke? Hearing this joke? what they just said: "What does where the behavior is so intolerable retarded mean ? "; "What do you know (in the presence of young people, for 2. Does this joke make you feel like you about people with AIDS?" Sometimes example) that simply shutting down have something in common with a per- you can get farther if you don't put that person makes sense. son with this disability?Closer to the joke-teller down (avoiding people with this disability? More un- embarrassment and guilt) but instead Model self-appreciation and derstanding of this disability? More re- ask a question: "I've heard that term appreciation for differences in laxed with people with this disability? used several times lately and I've been others: Gandhi said, "Become the wondering why people use it? What change you want the world to be." 3.Or does this joke make you feel "they" do you think?" Enlist their help in Take complete pride in your own are irrevocably different? More distant interrupting oppression and thinking body, including your size, your looks, from "them"? That they are somehow about how it operates on the per- your assorted physical conditions and less than human? Does the joke pro- sonal, cultural/social, and institutional differences. Respond to friends' vide or reinforce incorrect information levels. complaints about their gray hair or about the disability or make you tense their weight with authentic apprecia- or awkward in the presence of a person Share accurate information: "Did tion of them the way they are. Invite with this disability? you know that...?" "Actually, I have a others to share pride in their back- friend with Down syndrome and he's grounds and accomplishments. 4. Is this joke laughing AT people with reading as well as other kids in his disabilities or WITH them? Is the grade." Question the information Our work in this area is far from joke exploitative? Who benefits from contained in the insult, for example, done. We welcome contributions of humor of this type? "Where did you hear that?"; "How do jokes, cartoons, and strategies for dealing you know that's true?" Remember that effectively with humor, as well as stories What Do We Do About the contributions and strengths of of times/ways in which you've handled Inappropriate Humor? most "minority" group members have such situations with grace or success. Once we have decided that we are un- been excluded from our education. Most importantly, we ask you to enjoy comfortable with a joke or comment, what Share what you know, working from the process, take risks and realize that the do we do? Strategies for interrupting or con- the stance that the joke teller is world we create for people with disabili- tradicting the insults are difficult to formu- ignorant rather than malicious (even ties is the world we create for all of us. late. There are many variables and no one if you believe otherwise!) strategy will be appropriate or effective in every situation.Context matters: Who is Be light-hearted and relaxed; make a Mara Sapon-Shevin is Professor of the joke teller? Who is the audience? What's joke yourself: "Hey, some of my best Education and Robin Smith is a doctoral your relationship with the person telling the friends are...."; "Oh, no, call the humor candidate, both at Syracuse University. joke? Who are you (are you a person with patrol Mark's telling bad jokes again." Please send jokes and cartoons to: or without a disability) and how are you Be creative in your response. Some- Mara Sapon-Shevin or Robin Smith, viewed by others? times laughter can clear the mind and 150 Huntington Hall, Syracuse Univer- There are no perfect solutions, but we pave the way for an attitude shift. offer here a few strategies that some people sity, Syracuse, N.Y. 13244-2340; or email to: [email protected] have found effective. Refuse to participate in the ex- or [email protected] pected way: Suddenly become Personalize it: take it personally: serious and say, "I didn't think that Share the long-range impact on was funny"; "What was funny about PAGE 27, 61 TASH Newsletter, March 1999 SPECIAL HEALTH CARE NEEDS

(34 C.R.F. Sec. 300.13 (b) (10)) and n March 3, 1999 the US medical services as "services provided by a Supreme Court handed down an licensed physician to determine a child's important decision (Cedar Rapids medically related disability that results in Community0 School District v. Garret. F, the child's need for special education and 1999) that will affect the lives of many related services" (Sec. 300.13 (b) (4)). school aged children who have complex Despite this attempt, ambiguity has health care needs and require health care persisted. services while at school. By a voteof 7 to In 1984, the US Supreme Court 2, the Justices decided that a school rendered a decision that provided some district must pay for health care services guidance to parents and schools regarding for a student who requires ongoing the financial responsibility of schools for ventilator monitoring and care, tracheo- health care services. In Independent stomy suctioning, and cleanintermittent School District v. Tatro (1984), it was catheterization. established that schools were responsible Ever since the enactment of PL 94- for paying the costs associated with 142 in 1975 (now known as IDEA),there performing clean intermittent catheteriza- has been considerable debate surrounding tion (CIC) for a young student with spina the question of who is responsible for bifida. The Court used two criteria to paying the cost of health care servicesfor decide the case. First, it established that students with complex health care needs U.S. Supreme the health care service needed was who began attending school in increasing necessary to enable the student tobenefit numbers. Debates have occurred within from special education and therefore a IEP teams, in mediation, in administrative Court Requires "related service," and second,.it established hearings, and in the courts. that the service was not one that was

. Central to this debate has been the School District To medically excluded by IDEA, which was interpretation of the terms "related described as a service that must be services" and "medical services" in IDEA provided by a physician. (Lehr & Noonan, 1989; Lehr, 1996; Pay For Nursing Thomas & Hawke, 1999). Related services are defined in Services For IDEA as: transportation and such developmental, corrective, and "This case is about whether other supportive services (includ- Student With meaningful access to the public ing speech pathology and audiol- schools will be assured, not physi- ogy, psychological services, Complex Health the level of education that a cal and occupational therapy, rec- school must finance once reation, including therapeutic rec- access is aftained." reation, social work services, counseling services, including rehabili- Care Needs The Tatro decision only addressed the tation counseling. . .(20 U.S.C. Sec. BY DONNA LEHR, PH.D. health care procedure of clean intermittent 1401 (a) (17)). catheterization. Amber Tatro required CIC on a fixed, once-a-day basisand training Medical services are defined as financial responsibility for providing those necessary to administer theprocedure was being solely "for diagnostic and considered to be minimal. By contrast, the evaluation purposes" (20 U.S.C. services to the students (Lehr & Noonan, 1989; Lehr, 1996; Thomas &Hawke, 1999). health care procedures other students have Sec. 1401 (a) (17)). Those students have been educated at home, needed, such as tracheostomy suctioning, their health care ventilator care and gastro-nasal tube feed- In some cases, students' needed services or if they attended school, services were paid for by the parents, the ing, have been considered much more com- have been considered to be "related services" parents' insurance, or public insurance (e.g. plicated, and the training necessary to be- and the cost of those services have been as- come competent to providethe services, sumed by school districts. For other stu- Medicaid) (Lehr, 1996). more extensive. Sufficientdifferences in the dents, sometimes with identical health care In an attempt to provide some nature and extent of the services as com- needs, the services have been considered to clarification, in 1983, the Department of Education defined school health services pared to CIC, led some courts to find the be "medical" in nature. Since the services by a qualified criteria established in Tatro to have had lim- were not for the purposeof diagnosis or as related "services provided evaluation, the districts have not assumed school nurse or other qualified person" Continued on page 29 PAGE 28 62 TASH Newsletter, March 1999 SPECIAL HEALTH CARE NEEDS

services. While the Justices recognized School District To Pay For they do not have to be provided by the district (except in the case of necessary that a financial burden to school districts Nursing Services diagnosis or evaluation); if the services can may occur, they stated that since IDEA does not use the cost of services as a way Continued from page 28 be provided by anyone else, they must be provided by the school. of defining the scope and nature of iced usefulness for determining financial re- The school district petitioned and the services, cost could not be used to define sponsibility of school districts.Conse- US Supreme Court agreed to hear the case. who pays for services. quently, confusion regarding schools' obli- The district argued that decisions regarding The Justices concluded their opinion gations has continued and analyses of court school district financial responsibility should with the following: "This case is about cases reveal "conflicting interpretations of not be based on a simple, bright-line dis- whether meaningful access to the public federal statues and regulations" (Thomas & tinction such as who provides the services schools will be assured, not the level of Hawke, 1999, p. 226). but instead should be based on multiple fac- education that a school must finance once The case recently decided by the US tors "such as whether the care is continuous access is attained. It is undisputed that the Supreme Court (Cedar Rapids Commu- or intermittent, whether existing school service at issue must be provided if Garret nity School District v. Garret F.., 1999) health personnel can provide the service, the is to remain in school. Under the statute focused on a high school student whose cost of the service, and the potential conse- [IDEA], our precedent [Tatro] and the spinal cord was severed at age 4 due to a quences if the service is not properly per- purpose of the IDEA, the District must motorcycle accident. The accident left formed." They presented the case that a logi- fund such 'related service,' in order to help him paralyzed and in need of health care cal, common sense approach would lead to guarantee that students like Garret are integrated into the public schools." . services including urinary track catheter- a determination that the full time provision ization, tracheostomy tube suctioning, of a one-on-one nurse for a student in school Many are celebrating this decision as a ambu-bagging during suctioning, and is medical in nature, and that a bright-line victory for students with complex health ventilator monitoring. Initially Garret's interpretation is too narrow. They further care needs in today's schools, assuring family assumed responsibility for his asserted that the cost and the nature of the students' access to education in school health care needs in school by providing it care is beyond what was intended to be cov- buildings. It will no longer be possible for themselves or by paying for others to ered by IDEA. school districts to refuse to pay for provide it. In 1993 they requested that ORIMMI students' necessary health care services, the school district pay for the services. and place students at home to receive their The district refused. education when other means of paying for the services are not available. Others are The district argued that the health 41181112111L care services Garret needed were medical concerned about the impact of this in nature and not a related service. They The Supreme Court decision on school district budgets. In an concluded that the district was not decision was clear: amicus curiae ("friends of the court") brief required to pay for the services under the school districts are submitted to the Supreme Court, the IDEA medical exclusion provision, since responsible for paying for National Association of School Boards the needed services were not necessary for health care for students (1997) argued "local school boards have purposes of diagnosis and evaluation. The who require constant health struggled to meet (the] rising costs" of parents challenged the school district's care services. special education and called attention to decision and requested a hearing with the Congress' unfulfilled promise of a federal Iowa Department of Education. The The lawyers presenting Garret's case contribution to the costs of special hearing officer agreed with the parents that to the Supreme Court argued that the education. They pleaded that the prece- the school district should be responsible nature of the services Garret required were dent set by-a Supreme Court interpretation for the cost of providing Garret's health related services school health services as of IDEA in which the school district was care services while he attended school. defined in the IDEA regulations found responsible for the cost of providing The district appealed the decision of the necessary for him to benefit from a special for Garret's health care needs would result Department of Education in Federal education and since they did not have to in an additional burden to already District Court, where the Department of be provided by a physician, they did not financially strapped districts. Education's decision was affirmed. The fit the medical exclusion criteria. The Supreme Court decision was district then appealed the case in the The Supreme Court affirmed the clear: school districts are responsible for Eighth Circuit Court of Appeals. Again, lower court's decision that school districtS paying for health care for students who the previous decision was affirmed, should assume financial responsibility for require constant health care services. The holding the school district as responsible providing health care services, even when challenge facing school district administra- for paying for Garret's health care while he the services are more extensive than CIC. tors is also clear: enabling students IQ attended school. A clear distinction The Justices dismissed the argument that a receive an appropriate education in the (called a bright-line test) was made by the multifactored test, including costs as a least restrictive environment in a manner Eighth Circuit Court of Appeals: if the factor, be used to determine a district's that assures for their health and safety in a services must be provided by a physician, responsibility for paying for health care Continued on page 30

PAGE 29 6 3 TASH Newsletter, March 1999 SPECIAL HEALTH CARE NEEDS

School District lb Pay For Nursing Services Continued from page 29 cost-effective economic fashion. If districts apply the historic ParaEducators: models for cost-savings, students with complex health care needs might be placed where the services are (i.e., in schools where there LifeLines already are nurses) or clustered together in classes where health care services could be provided to several students. These service in the Classroom delivery models are threats to the mandate of educating students in the least restrictive environment. Additionally, cost saving measures such as having unlicensed, less costly personnel 1999 Trainer-of-Trainer administering health care procedures might be appropriate for some procedures, for some students, but may not result in safe Sessions care for others. Attention must also be paid to state laws govern- Build in-district resources ing the delegation of responsibility for the provision of care to unlicensed personnel (Lehr, 1996; Porter, Haynie, Bierle, to ensure on-going paraeducator Caldwell, & Palfrey, 1997). training by attending this 3-day Many school districts thoughout the country have already workshop to become a found safe, appropriate and cost effective means for meeting their obligations to students with complex needs similar to those of ©LifeLines trainer. Garret's. As one district special education administrator said, "When the newspaper reporter called and asked what impact the Offered by LeCON1SUL7INIG:' Supreme Court decision would have on the district, I said 'None. We've been doing it all along. With the clarification provided by Orlando, Florida the Supreme Court, we can look forward to more districts seeking solutions to meeting their responsibilities and an increase in the Colorado Springs, Colorado number of students with complex health care needs who gain access to an appropriate education in least restrictive settings. Sacramento, California Donna Lehr, is an Associate Professor in the Department of Special Baltimore, Maryland Education at Boston University where she heads up the programs in the area of severe disabilities. She is the chairperson of the TASH Special health Care Needs Committee. Dr. Lehr can be reached by Portland, Oregon e-mail at St. Louis, Missouri References Cedar Rapids Community School District v. Garret. F No. 96-1793 (1999) Syracuse, New York Irving Independent School District V Tatro, 468 U.S. 883 (1984). Lehr, D.H. (1996). The challenge of educating students with special health Skokie (Chicago), Illinois care needs. In D.H. Lehr and E Brown. (Eds.). People with disabilities who challenge the system (pp. 59-78). Baltimore: Paul H. Brookes. Charleston, South Carolina IDEA (Individuals with Disabilities Education Act), 20 U.S.C. Section 1400 et seq. See our website for IDEA regulations, 34 C.F.R. Sec. 300. Lehr, D.H. , & Noonan, M.J. (1989) Issues in the education of students with more details: complex health care needs. In E Brown and D.H. Lehr (Eds.) Persons with profound disabilities: Issues and practices (pp. 139-158).Baltimore: Paul H. Brookes. www.liconsulting.com National Association of School Boards (1997) Americus Curiae brief in support of petitioner in the case of Cedar Rapids Community School District v. Garret. F No. 96-1793 LeComsucril\16 Porter, S. Haynie, M., Bierle, T., Caldwell, T., & Palfrey, J. (1997) Children P.O. Box 6049-747 assisted by medical technology in educational settings. Baltimore: Paul H. Brookes. Katy, Texas 77491-6049 Thomas, S.B. & Hawke, C. (1999). Health-care services for children with disabilities: Emerging standards and implications. The Journal of Special Telephone (281) 395-4978 Education, 32 (4),226-237. fS Fax (281) 392-8379 BEST COPY AVAILABLE PAGE 30 64 TASH Newsletter, March 1999 MARCH 1999

The FREE! Disability Resource Catalog 'ITT ). DIM:skr" Company VIDEOS SOFTWARE CD-ROMS Tony EspinozaLeticia Miller NEW 1999 Catalog lists over 100resources Toll Free: 877-773-7703 for staff development and skills training for Office: 909-393-3066 Fax: 9(19-793-9519 people with disabilities. Includes award P.O. Box 2575.Chino Hilly PziAbly.1161()linolh, 91709 winning videos, software, books and board games on employment, inclusion, transition, TO ORDER advocacy, disability awareness, sex ed., Toll Free: friendmaking, and more. 1 (877) 773-7703 Write PDA TASH Free Catalog, P.O. Box 2038, Syracuse, NY 13220-2038 $23.99 + Shipping & or call 800-543-2119. Handling $6.50= $30.49 Visit Our All New Updated Web Site @ WWW. PDASSOC.COM

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Policy Statement Priscilla Newton, Editor It is TASH sion 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 Jay Klein members or the Association as a whole. TASH reserves the right to, exercise edi- Doug Bikleri, Vice President 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 emphaci7es 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 James Meadours individuals" refer to characteristics of individuals, not to individuals themselves Jorge Pineda Terms such as "people with mental retardation," "children with autism,' and "in- Jacki Anderson Patrick Schwarz 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 Jacqueline Thousand

Referred by: Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: Is the above your E work address7homeaddress E 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/leacher () Regular Education Teacher/Administrator () Other

Moving?Please notify TASH of your new address. () I would like to spread my payments out. Enclose 1/3 and you will receive 2 additional invoices at monthly intervals. General Membership (individual) $88. If you are applying for a student membership, please provide the following Agency/business/university/college/library/school $200. information: (allows 3 conference attendees at the member rate) Department Self Advocate, Parent, Full Time Student, Direct Careworker/Para professional/Personal Attendant (for whom payment of full fee would College/University present a hardship) $45. Student I.D. Number Family (group rate) $136. Lifetime Member $1000. Anticipated year of completion Add $10 for postage costs for members in Canada and $25 for members outside the U.S. and Canada. ( ) Include an additional $15 if you are applying for an individual membership Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. or $30 if you are applying for an organizational membership and also want to bank. Add a $20 processing fee if check is not drawn on a U.S. bank. If you become a member of your local chapter. would like to charge your membership, please fill in the necessary information: Please make check payable to: TASH () Mastercard () Visa ( ) Discover Address: 29 W. Susquehanna Avenue, Suite 210 Card Number Expiration Date Baltimore, MD 21204 Signature Te 1 e p hone:410/828-8274 Fax: 410/828-6706 L

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PRINTED IN THE U.S.A. ISSUE NUMBER 3 App4LAWIRCH 1999 on'trea e Twit4: f,,AllItx-A;.0041111,tkng,t,s0 41,411,

Integration, ALSO INSIDE: Olmstead Analysis, NOT The 'Importance of Arts Education, Creating New Segre atio Employment Options and Canada's Latimer Case

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Cover Logo Courtesy of ADAPT speaks via an adaptive device; Diane Coleman, a leader in the Not Dead Yet movement; Anne Donnellan, an expert on new ways to view and understand autism TABLE OF CONTENTS and related disabilities; and Rosangela Berman-Bieler, a leader in international From the Executive Director Page 2 1999 Conference Awards Page 4 disability issues. Look for more details in Olmstead Update and Analysis Page 8 future issues of the Newsletter. Intl. Discussion Group on Transforming the Service Delivery System Page 13 The Conference Committee has devoted A"New" Dr. Death at Princeton Page 14 significant attention to identifying From the Executive Director The Importance of Arts EducationPage 17 strand topics and strand leaders. Creating New Employment Options BY NANCY WEISS Strands are planned on the following Through Supported Employment Page 19 topics: Advocacy, Aging, Assisted TASH Chapter Corner Page 23 Suicide, Creative/Performing Arts, Not Dead Yet Page 25 An Update from Central Communication, Community Living, Women and Care Page 26 Office Canada's Latimer Case: Implications for Criminal Justice, Due Process, Early Equal Justice Page 30 Childhood, Employment, Ethics/Rights, Meetings Calendar Page 34 Here's a peek at what's been Family Issues, Governmental Affairs, keeping us busy... Guardianship, High School Inclusion, Higher Education, Inclusive Education: AnnualConference'99 Update: best practices, International Inclusion, TASH (formerly The Association for Per- The Conference Committee is putting sons with Severe Handicaps) is an inter- Leisure and Recreation, Management, together an incredible agenda for this Multicultural Issues, Paraeducator/ national advocacy association of people year. Five keynote speakers have been with disabilities, their family members, Paraprofessional Issues, Personnel invited so far. They include: Kyle other advocates and people who work Glosier, a middle school student who in the disability field. TASH actively pro- Continued on page 3 motes the full inclusion and participation of persons with disabilities in all aspects of life.To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Balti- more, MD 21204 or phone (410) 828- 8274, ext. 8 or e-mail: [email protected]. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and MISSION STATEMENT 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, ft.sTilSil 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] Building communities in which no oneis For questions about membership, conference registration or exhibiting, call: segregated and everyone belongs; Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] For information on government affairs or fundraising/development, call: Forging new alliances that embrace diversity; Marcie Roth, Director 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 and inequities; 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: [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 (4W) 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]. PAGE 2 TASH Newsfrtier, April 1999 BEST COPYAVAILABLE FROM THE EXECUTIVE DIRECTOR

An Update from Central committees, action alerts, board Judge Broderick Tape: Work has Office biographies, staff roles and contact been completed on the tape of Liz Continued from page 2 information, all of the current resolu- Healey interviewing Judge Broderick, tions, opportunities to join on-line, the Judge who ordered the closing of links, exhibitor information, conference Pennhurst. This tape was made by the Preparation, Positive Approaches, information through 2003, and more. Montgomery County Human Services Related Services, Research, Self-Determi- The "General Links" section is still Center. The tape is available for $29.95. nation, Sexuality, Spirituality/Peace, under construction. Please suggest Special Health Care Needs, Students who additional sites you think TASH should New Book Ideas: We are working on Severely Challenge Schools, Teacher link to and feel free to pass along any several new book ideas with Doug Preparation, Transition, and Urban feedback. Fisher, Chair of TASH's Education Issues. We have received 378 submis- Committee. Doug suggested that many sions, which is considerably more than Sponsorship Activities: Priscilla university professors training new we had received last year at this time. Newton and Denise Marshall have been teachers across the country assign the Kelly Nelson is busy entering all the working on structuring a range of same articles from both JASH and the proposal information and short descrip- sponsorship opportunities for this year's TASH Newsletter. Doug's idea is to tions into the computer. Proposals will conference. See the results of their publish a book of these classic and go out to reviewers over the next few work at:http://www.tash.org/99confer- important readings which could serve as weeks. ence/sponsorship.htm. This year we a textbook for teachers in training. are introducing a "virtual exhibit hall" Doug Fisher completed work on a Progress on Strategic Plan: The Execu- where exhibitors (who pay an addi- survey that was sent to 180 TASH tive Committee and many other Board tional amount for the privilege) will be members who identify themselves as members have been working on action able to display their products and university professors/instructors. The plans for the top priorities identified by services on our web site for a six month survey seeks information about which the Board at their December meeting. period. JASH and Newsletter articles professors The strategic plan will be finalized at the currently assign to students and which Board's July meeting. NSCIA Conference: Plans are they would recommend including in a proceeding for the National Spinal Cord book of readings. Progress on Revision of Injury Association's conference which Resolutions: An important priority of we are organizing. It will be held Doug Fisher has also suggested that we the Board has been to revise TASH's September 26th - 29th at the Marriott at publish a "Year Book" after each annual resolutions to produce a concise set of Metro Center, Washington, D.C. conference. Presenters would be invited resolutions that can be distributed Sessions are planned on: independent to submit the work they presented broadly and that clearly communicate living, sexuality, life planning, managed within thirty days after the conclusion TASH's beliefs, values and concerns. care, PAS provision, ventilator users, of the conference. A peer review Committees have been asked to review assistive technology, recreation, assisted process would be established to select and revise existing resolutions and to suicide, violently acquired SCI, depres- 50-60 "papers" to be published. Con- recommend new resolutions related to sion, spinal cord injury in children, ference registrants would have the their committee's topic area. Revised aging, NIH funded research, MiCASSA, opportunity to order the year book in resolutions have been completed in the work incentives, Medicaid/Medicare, advance, at a reduced cost, in conjunc- areas of employment, special health care and housing. More information is tion with their registration. It would needs, sexuality and early childhood. available at: http://www.tash.org/ also be advertised for purchase after the The goal is to have all resolutions calendar/nscia99.html, or at NSCIAs conference. We are seeking bids from revised and new resolutions developed web site: www.spinalcord.org. publishers for this project. for final approval at the July Board meeting. Chap ter Manual: Linda Rammler has Education Workshops: Denise completed work on a draft of a chapter Marshall is working on organizing Web Page Improvements: If you manual. This was a group effort with several education-focused trainings. We haven't done so lately, check out the contributions from Donna Gilles and are going to experiment with two new web site: http://www.tash.org. It's the chapter representatives that at- approaches. One is to market trainings been completely revised. TASH's web tended the Chapter Leadership Day in to major schools systems. They would master, Dan Dotson, has done extensive Seattle. Copies are being mailed to all pay a flat fee and would take care of work to incorporate many of the Chapter representatives and Board publicizing the training and making suggestions we received for improving members for review and suggestions. local arrangements. The other is to the web site. The site now includes Call to request a copy if you'd like one coordinate a training jointly with a expanded information on chapters and for review. 69 Continued on page 21 PAGE 3 TASH Newsletter, April 1999 1999 TASH AWARDS

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IT'S TIME ONCE AGAIN TO SUBMIT interventions and progress in the use of positive TASH AWARD APPLICATIONS! behavioral supports.

Each year at the annual conference, TASH 1999 ALICE IL HAYDEN AWARD confers a series of awards that recognize individuals, teams, organizations, or media This $500.00 cash award will be presented to a doctoral student enrolled in a program in education or a related which exemplify the spirit and mission of TASH. field and who demonstrates potential for leadership in Submit your application (found on the following teaching, scholarship, and service on behalf of people with two pages) today! significant disabilities. The individual needs to have demonstrated a continuing desire in working in partner- Who comes to mind when you think of someone ship with people with disabilities in accordance with who has made a positive difference in the lives of TASH values. persons with significant disabilities over the past year? Have you recently seen an outstanding media 1999 MEDIA AWARDS piece that embodies the values of TASH? This award is presented to honor presentations in either print or film, which best promote the inclusion of people *Do you know of_ a student enrolled in a doctoral with significant disabilities in all aspects of community program in education or a related field who demon- life, and which have reached a national audience. Criteria strates leadership, advocacy, and commitment to for selection include: high quality, accuracy of informa- efforts of individuals with disabilities? tion, meaningfulness of subject matter, potential for consciousness-raising, and promotion of quality of life for Is there a team of people working together to persons with disabilities. improve the quality of life for a person(s) with disabilities? 1999 coll./mm/1'1'10N AWARD This is your chance to honor such accomplishments with official recognition. Please take the TASH will recognize collaborative teams of persons with disabilities, family members, professionals, community time to submit an application. Awards will be members and/or peers, who are engaged in projects and conferred as part of the TASH Annual Conference advocacy efforts to ensure the to be held in Chicago, December 8-11, 1999. implementation of TASH values in their local Award applications will be accepted through July community, or in a way that has affected others at a local, 31, 1999. Please be sure to indicate for which state, regional, and/or national level. The work of the award you are applying on the application, and recipients of this award should serve as an inspiration for submit all required documents or information other community efforts, and demonstrate creativity in supporting an individual or individuals to realize the goals requested for that award. of self-empowerment and full community inclusion.

1999 POSITIVE APPROACHES AWARD 1999 THOMAS G. HARING AWARD FOR RESEARCH This award is presented to the person whose contributions have served to advance non-aversive This award is presented to promote research and scholarly intervention with persons who display challenging activity in the field of significant disabilities. The award behaviors; have demonstrated outstanding efforts will be presented to the author(s) of a study of particular leading to the understanding of challenging behavior; significance that was published in JASH within the two and whose actions have advanced the use of non-aversive years prior to the annual conference.The study will have demonstrated scientific merit, and have made an important contribution to the disability field.

PAGE 4 70 TASH Newsletter, April 1999 1999 TASII AWARD APPLICATION - Applications due July 31, 1999-

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: ( ) O Collaboration Award Evening Telephone: ( ) O Media Award Is this individual(s) a member of TASH? 171 Yes O No 0 Positive Approaches Award Name of team members (more room on reverse side) O The Thomas G. Haring Award for Research Street Address: (4) To be considered, the original completed application and supporting materials must be received in the TASH City: central office no later than July 31, 1999. 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:

(.I PAGE 5 TAM News/eller, April 1999 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 interested 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 the following to hereby grant permission to TASH to show: Evening Telephone: ( ) (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 1999 Annual Conference. Similarly, as it applies to the promotion of the TASH Awards and the 1999TASH Conference, the *** producers waive any monetary compensation . ignature: PAGE 6 72 TASH Newdeller, April 1999 1999 TASH ANNUAL CONFERENCE

.11.1,1 .

Chis Our Kind of Town Make it your town too! Plan to join us for "TASH 2000: Our Turn Now" to be held at the Chicago Hilton and Towers. The TASH Conference is where the best of hearts and minds in the disability movement gather to provide and share cutting-edge information that inspires advocates, parents, and professionals alike to understand, support, and creatively move 'WASH 2000: Our Iiirn Now" forward toward inclusive lives for all. Whether you are coming 1999 TASH Conference Chicago Hilton and Towers December 8-11 from around the world or across the street, this is the place to join over 2500 activists, advocates, educators, and leaders in the quest Chicago Hilton and Towers for full inclusion and participation for all people with disabilities - 720 South Michigan Avenue regardless of their level of disability or need for support. Chicago Illinois, 60605 312-922-4400 or 1-800-HILTONS TASH Rates: $146.00 Single $171.00 Double/Triple For more information or questions about the conference agenda please contact: Look for more information in the May Kelly Nelson, International Conference Coordinator issue regarding official airlines and Phone: 410-828-8274 x105 Email: [email protected] registration for the 1999 Conference!

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 student 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 membership 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]

73 PAGE 7 TASH News/eiter, April 1999 OLMSTEAD UPDATE AND ANALYSIS

-,aixs.\\ .11fflifiK' rifittitel'"*Witha.'' 14111 1 111114111 bi i 60 ,,,,,,. I .-L....t.J / Pulling the Plug n tVIM ,, II 1. iI ,.. !.. :;,: : 0. on the ADA? I 2! t171.1111111 j nTT 1:-.. . ..,. ....;...-7...... Olmstead v. L.C. and E.W. '7= .mti. 11111 II ., a...... 5 at the Supreme Court :-.. ... :' 1

BY JONATHAN D. EZEKIEL fully in the U.S. 11th Circuit Court of give people a new lease on life, but to Appeals that segregated placements for proclaim that state-sanctioned segrega- persons with disabilities violates Title II tion and institutionalization of persons On April 21 the Supreme Court of the Americans with Disabilities Act with disabilities, even when unneces- heard the case of Olmstead v. (ADA). Two exceptions were recog- sary, will henceforth be consistent with L.C. and E.W., pitting the state nized: when integrated treatment in the the ADA. of Georgia and a host of powerful allies community unduly burdens a public against two brave and unknown women entity or fundamentally alters its system. The implications of Georgia's refusal to (who are now joined by powerful friends Neither of those circumstances applies provide integrated care in the commu- of their own). here. nity have not escaped the notice of major power centers, both private and Despite significant disabilities and years Georgia has been moving officially, if not public. Calling this case "one of the of confinement in state institutions, actually, toward a community-based most important of our generation," the Lois Curtis and Elaine Wilson have system of care for its citizens with Legal Director of the Judge David L. entered the national spotlight and may disabilities for years and has, by all Bazelon Center for Mental Health Law, rewrite American legal history. With its accounts, a thriving economy. Further- Ira Burnim, says a defeat in Olmstead ruling in Olmstead v. L.0 and E.W. more, as the district court later declared, "could be a mortal wound to the expected in early July, the Supreme the cost of community-based care in Americans with Disabilities Act." Court could endorse or dismantle the Georgia is considerably less than the central tenet of the Americans with cost of institutional care.2 Disabilities Act: our society's commitment to end the unwarranted segrega- Moreover, in Olmstead Georgia contra- Neither the ADA nor Olmstead tion of persons with disabilities. dicts its own laws and policies. (The v. L.C. and E.W. requires "Olmstead" in Olmstead v. L. C. and E.W. deinstitutionalization. What With the rights of 50 million Americans refers to Tommy Olmstead, Commis- they do require, and what the with disabilities at stake, activists, family sioner of Georgia's Department of Court should endorse with its members, caregivers, and many in the Human Resources.) Georgia's state code full legal and moral authority, is religious, legal, and medical communi- declares that "it is the policy of the state the fundamental premise that ties are on full alert. that the least restrictive alternative persons with disabilities should not be needlessly forced into placement be secured for every client at services or programs that are What has become in some circles a cause every stage of his habilitation."' isolated and segregated from celebre began quite simply. Elaine the rest of society. Wilson and Lois Curtis, women with Gov. Roy Barnes of Georgia, in his labels/diagnoses of mental retardation January 1999 Budget Address, publicly and mental illness, were ready to receive advocated for increased funding for treatment in their community, as "community-based services which will Twenty-six states have publicly sup- acknowledged by Georgia's own treat- give...people who are mentally or ported Georgia in either asking the U.S. ment teams. But for years, according to physically challenged a new lease on Supreme Court to hear the case, or Atlanta's Legal Aid Society, Georgia life." "Too often," the Governor ob- (once that was accomplished) in an steadfastly "refused to release them to a served, "we institutionalize patients who amicus curiae "friend of the court" community-based program with appro- pose no threat to society, who could be brief to the Supreme Court. priate services."' better served at a lower cost within the communities in which they live."' Not to be outdone, in February 1999, Advocates, later joined by the U.S. the State and Local Legal Center on Department of Justice, brought suit on But in Olmstead v. L. C. and E.W. the behalf of the National Governors' the plaintiffs' behalf, arguing success- Supreme Court is being asked not to Continued on page 9 PAGE 8 74 TASK Newsletter,April 1999 OLMSTEAD UPDATE AND ANALYSIS

Pulling the Plug on the ultimately enacted as the ADA and has poses such serious threats, not only to ADA? since monitored its implementation; those with mental retardation and mental illnesses, but to the millions of Continued from page 8 The American Civil Liberties Union; people who consider the ADA as important in guaranteeing those rights The American Psychiatric Association which we, as Americans, have always Association, the National Conference of and the National Alliance for the Men- considered to be a part of our heritage. State Legislatures, the Council of State tally Ill, which filed a brief jointly; Its enactment followed years of effort Governments, the National Association on the part of the community in of Counties, the U.S. Conference of The Solicitor General of the United affirming their right to fulfill their God- Mayors, and the National League of States and the U.S. Justice Department, in given potential."' Cities, et al., filed a brief with the a "Brief for the United States"; Supreme Court supporting Georgia's position on Olmstead. Former Attorney General Richard Thornburgh, who supervised the Justice Why have so many powerful states and Facing formidable opposition, national Department as it developed regulations to major organizations representing public organizations consisting of persons with implement and enforce the Americans entities joined with Georgia in attacking disabilities and their advocates have with Disabilities Act, a critical element in integrated services the fundamental coalesced into a powerful legal and this case; and premise of the ADA before the political coalition of their own. After Supreme Court? Some of their key intense lobbying, nineteen of the Thirty national groups (plus seven arguments, which are now being twenty-six states that publicly supported Georgia groups) including: American evaluated by the Supreme Court and Georgia have reversed themselves, either Association of Retired Persons (AARP); which could prevail throughout the declining to sign the amicus brief to the American Association on Mental Retarda- United States, are listed below, with a Supreme Court or dissociating them- tion; American Network of Community bit of context provided. selves from that brief after signing it. Options and Resources; American Psychiatric Nurses Association; American First,their briefs salute a state's right to Countering the briefs on behalf of Psychological Association; Arc of the avoid federal interference, a rationale Georgia are briefs supporting Lois United States; Autism Society of America; familiar to African-Americans, women, Curtis and Elaine Wilson, filed by the Brain Injury Association, Inc.; Catholic and others who have badly needed - following: Charities, USA; Disability Rights Educa- and rightfully obtained - help from the tion and Defense Fund, Inc.; Epilepsy courts. Federal intervention became Fifty-eight former state commissioners Foundation of America; Joseph P necessary because states historically and directors of state mental health and Kennedy, Jr Foundation; National denied persons who have disabilities developmental disabilities departments; Association for Rights Protection and the equal protection promised in our Advocacy; National Association of Constitution and finally assured them Ten organizations of activists who are Protection and Advocacy Systems; by the ADA. consumers of mental health services and National Association of Social Workers; survivors of psychiatric illnesse.g., the National Association of the Deaf; Na- In rejecting the States' argument, the National Mental Health Consumers' Self- tional Catholic Office for Persons with U.S. Solicitor General's brief observes Help Clearinghouseand eight individual Disabilities; National Down Syndrome that "Legislation will be upheld as a consumers/survivors; Congress; NISH (formerly National valid exercise of Congress's power Industries for the Severely Handicapped); under Section 5 of the Fourteenth Organizations of persons with disabili- National Mental Health Association; Amendment if there is a 'congruence ties, including Self-Advocates Becoming Volunteers of America; and United and proportionality between the injury Empowered, three fourths of whose 20,000 Cerebral Palsy Associations, Inc. to be prevented or remedied and the active members "were once segregated into means adopted to that end.' City of institutions and now are not"; The National Catholic Office for Boerne v. Flores, 521 U.S. 507, 520 Persons with Disabilities (NCPD) is (1997). The integration mandate of TASH, ADAPT, and the National known as "the voice of the Catholic Title II readily satisfies that test."' Council on Independent Living, three Church in promoting the membership nationally recognized disability rights of people with disabilities in the church Second,even though the facts in this groups; and society."5 Mary Jane Owen, its case are specifically about community- executive director, issued the following based care only when care in the The National Council on Disability, an statement: "NCPD could not avoid community is appropriate, Georgia and independent federal agency that was taking a position in this case which instrumental in drafting the legislation " Continued on page 10 PAGE 9 J TASH News/eller, April 1999 OLMSTEAD UPDATE AND ANALYSIS

Pulling the Plug on the provide the best services must operate ADA? at capacity."8 Continued from page 9 "Too often," Georgia's own Governor Roy Barnes observed, "we institutionalize patients who pose no At the Supreme Court on April 21, the its allies hope the Court will be put off threat to society, who most important issue turned out to be by the (false) specter of Olmstead v. could be better served at a none of the above. According to L.C. and E.W. leading to total lower cost within the Georgetown University Law Professor deinstitutionalization and chaos. communities in which Michael Gottesman, who argued L.C. they live." and E.W.'s case before the Supreme Third, as noted, the ADA, its legislative Court, the concern uppermost in history, and the Justice Department's some Justices' minds was that a ruling implementing rules all specifically call in favor of Gottesman's clients would for community care in integrated ees, joined numerous organizations in lead institutions to begin dumping settings insofar as that would not have patients onto the street. an undue financial impact on a public the Voice of the Retarded et al., amicus brief which supported the Court of entity. In Olmstead, Georgia and its The Supreme Court's concern about amicus briefs make unsubstantiated Appeals ruling in favor of community care in this case! possible patient dumping is welcome, claims of imminent financial disloca- but it should not be used as a tion. But it is not at all clear that smokescreen. The Court, unfortu- community care is more expensive, or However, their brief also emphasizes the need, in their view, to preserve the nately, cannot unilaterally ensure that even as expensive, as institutional abuses do not occur. But if it chooses care. In any event, this is a (theoreti- institutional-care option against an overemphasis on community-based to, it can apply "strict scrutiny" to cal) burden which the state, per ADA, actions that might have a discrimina- could modulate. care, even though community-based care is crucial to the integration tory impact upon persons with mandate of the ADA: that is, the right diagnoses of mental illness or mental Fourth,widespread stereotyping, retardation. sensationalism, and prejudice have fed of persons with disabilities to participate in programs and in our society regional NIMBY (not in my backyard) Applying its highest level of protec- syndromes, fomenting irrational fears alongside persons who do not have disabilities. tion, or "strict scrutiny," would send about including persons who have a clear message to public entities that disabilities in their own communities. Seventh,and perhaps most chilling of the Court means business in protect- More politically powerful neighbors ing the rights of this insular, op- without disabilities have then put all, is the argument advanced by the brief to the Supreme Court on behalf of pressed, and politically powerless pressure on elected officials (and minority. Not only can the Court do zoning officials) to protect their states supporting Georgia, including Mississippi, Hawaii, South Carolina, so, but in light of its own criteria and interests, as they see it, by excluding in light of the passage of the ADA unwanted persons. Montana, Nevada, Wyoming, Tennes- see, Texas, Colorado, Indiana, Massa- (embodying the voice of a coequal chusetts, Minnesota, and Washington. branch of government), it should feel Fifth,vested interests often oppose morally obligated to do so. diverting funds, jobs, and power from [Six of these states subsequently reconsidered and withdrew their institutions into the community. Neither the ADA nor Olmstead v. L.C. Public officials may be loathe to buck names, leaving Colorado, Hawaii, Montana, Nevada, Tennessee, Texas, and E.W. requires deinstitutiona- institutions such as nursing homes lization. What they do require, and and long-term care facilities which are and Wyoming as Georgia's remaining allies.] what the Court should endorse with a significant source of tax revenue and its full legal and moral authority, is the which help fund election campaigns. That brief proclaims that economies of fundamental premise that persons scale will be difficult to achieve if with disabilities should not be need- Sixth,unions traditional allies in lessly forced into services or programs civil rights struggles are feeling patients are discharged. "If institutions begin to empty, the facility-based that are isolated and segregated from and applying pressure to stem the flow the rest of society. of layoffs as institutions reduce reimbursement schemes in place nationwide will be undermined because their census or close their doors The possibility that public entities may entirely. of the resultant diseconomies of scale. These institutions typically are reim- continue the historic abuse of persons bursed based on a daily bed rate, and to AFSCME, the American Federation of State, County and Municipal Employ- Continued on page 11 PAGE 10 76 TASK News /e/ %, April 1999 OLMSTEAD UPDATE AND ANALYSIS

mental retardation in crisis with Pulling the Plug on the Jonathan D. Ezekiel is a writer ADA? community-based treatment and are instead routinely sending them to jail. and researcher based in Maryland. Continued from page 10 He is the author of "From Streets A defeat on Olmstead would eviscerate the ADA. Our society, with the To Shelters To Jails" and "Cover- approval of our highest court, would ing the Newest ADA Decisions," both published in the Investiga- with diagnoses of mental illness or occupy a squalid human rights niche in which the right to support and services tive Reporters and Editors (IRE) mental retardation must not be used as a Journal, and the coauthor of rationale for dealing a mortal wound to in the most integrated setting would be replaced by isolation and segregation. Criminalizing the Seriously the ADA. Rather than per-petuate a Mentally Ill: The Abuse of Jails as system that is rank with abuse, the Court Mental Hospitals, a 1992 publica- should exert its leadership to help create A bitter history has proven that laws and the courts cannot alone guarantee tion of NAMI and Public Citizen's a legal, social, and political climate in Health Research Group. which community-based services can that adequate care will be provided, and will succeed. whether in institutions or in the community. But "care" that is only References Applying "strict scrutiny" to actions available behind bars -- in a "treat- negatively affecting persons who have ment" setting that stigmatizes and often 1. Atlanta's Legal Aid Society, at http:// diagnoses of mental illness or mental traumatizes the recipient -- is beyond www.law.emory.edu/PI/ALAS/ retardation would be an enormous step all national and international standards interesting.htm in that direction, one that only the of law and decency. 2. The district court in Georgia "found Supreme Court can take. The Olmstead that the annual cost to the State of v. L.C. and E.W. case is the perfect The ADA was enacted by the United providing community-based treatment opportunity. States Congress with overwhelming to L.C. and E.W. - about $20,000 each - bipartisan support. If deconstruction of was not unreasonable in relation to the The implications of an adverse decision that landmark civil rights legislation State's overall mental health budget, by the Supreme Court in Olmstead are were upheld in the Supreme Court, we which was about $706.8 million in fiscal ugly: life unnecessarily locked inside would be rendered powerless to help a year 1998." U.S. Solicitor's Amicus Brief institutions or state hospitals is degrad- sibling, parent or child with a disability to the U.S. Supreme Court, Olmstead v. ing and often dangerous for persons if he or she becomes subject to the L.C., Notes, p. 21., httpi/ already vulnerable to abuse and neglect. tender mercies of an institutional www.bazelon.org/olmstead.html Less obvious consequences of an adverse administrator or public official who 3. GA. Code Ann. 37-4-121 (Mitchie ruling in Olmstead could haunt our cares more about "economies of scale" 1995), cited in U.S. Solicitor General's society long after our current justices than about human freedom and dignity. Amicus Brief to the U.S. Supreme Court, have retired. An assault of this magnitude on the civil rights of persons with disabilities Olmstead v. L.C., p.14., http:// www.bazelon.org/olmstead.html Tragically, in the United States today jails threatens the freedom of all Americans. 4.http://www.ganet.org/governor/ and prisons are the emergency rooms spbudget.html and default treatment settings for Instead, let us hope that a majority of 5. Brief for Amici Curiae American hundreds of thousands of citizens with the Supreme Court, after considering Association on Mental Retardation, et disabilities, many of them primarily the host of reasoned and passionate al., in Support of Respondents, Interests `guilty' of not having money, insurance orvoices raised in support of Lois Curtis of the Amici Curiae, p. 13. http:// access to decent healthcare. Because of and Elaine Wilsonincluding a "Brief www.bazelon.org/olmstead.html inadequate community-based services, for the United States"will affirm their 6. Web Site of the National Catholic police officers across our country are constitutional and human rights. To do Disability Office, April 15, 1999. httpi/ often forced to take persons who have a so will honor America's (and Georgia's) www.ncpd.org/OLMSTEAD.HTM mental illness off frozen streets to jail. finest traditions. 7. Amicus Curiae Brief for the United There are no integrated community States, Seth P. Waxman, U.S. Solicitor treatment settings available to most of Copyright (c) 1999, Jonathan D. Ezekiel. All General, et al., p. 19 at http:// these Americans yet. rights reserved. Electronic redistribution and www.bazelon.org/olmstead.html photocopying for nonprofit purposes is 8. Amicus Curiae Brief of the States in A Supreme Court decision supporting permitted, provided this notice is attached. Support of Petitioners to the U.S. institutionalized, segregated services Unauthorized, for-profit redistribution is Supreme Court, Frankie sue Del Papa, would send a message of approval to prohibited. For further information regard- Attorney General of Nevada, et al, public entities across America that are ing reprinting, please contact the author at Olmstead v. L.C., p. 9. inexcusably failing to provide persons [email protected] with diagnoses of mental illness or TASK Newdeller, April 1999 BEST COPY AVAILABLE" PAGE 11 ADA RALLY

On April 20, 1999the eve of the oral arguments before the U.S. Supreme Court in the case Olmstead v. L.C. and E.W. approximately 150 tireless disability rights activists held an all night vigil on the sidewalk in front of the high court to demonstrate their support of the Americans with Disabilities Act.

L-R: Marcie Roth, Director of Governmental Affairs and Public Policy, TASH; Lois Curtis; Linda Anthony, Executive Director, PA Coalition of Citizens with Disabilities; and Elaine Wilson. Lois and Elaine are the named plaintiffs in the original lawsuit.

The night-long vigil was followed by a groundswell of additional supporters Rights activists prepare for a night on the not-too- that arrived at the Supreme Court on the day of the oral arguments. warm sidewalk near the Supreme Court building.

The Serena Merck Memorial Award for Innovation and Dedication in Practice

Purpose of the AwardThe Serena Merck Memorial Award is given annually to an exceptional individual who has 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 AwardeeProspective awardees should meet one of the following categories: (1) Provides, as an employee or volunteer, services for children who have mental retardation and significant mental health problems. (2) Demonstrates long-standing commitment and innovative care of this population which has positively affected their quality of life and/or life opportunities. Submission GuidelinesOrganizational 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, 1999, to: Mr. Frank Hatch, The John Merck Fund, 11 Beacon Street, Suite 1230, Boston, MA 02108 AwardA $5,000 cash award and plaque will be presented to the awardee at the 16th Annual National Association for the Dually Diagnosed (NADD) Conference held November 10-13, 1999, in Niagara Falls, Canada. The awardee's travel expenses to the conference will also be covered.

PAGE J2 78 TASH Newsletter, April 1999 CREATING NEW APPROACHES TO INDIVIDUALIZED FUNDING INTERNATIONAL DISCUSSION GROUP ON TRANSFORMING THE SERVICE DELIVERY SYSTEM BY BRIAN SALISBURY AND STEVE DOWSON

An international e-mail discussion Identifying the appropriate balance group began approximately three between the freedom of the individual years ago for the purpose of who requires support to achieve his/her focusing on new approaches for allocat- own desired future, and the duty of the ing public money and providing plan- State to ensure that public funds are ning assistance which will (or could) used properly; enable people with disabilities to obtain the community services and supports Strategies that will lead to the broader they require to participate as full acceptance and implementation of these citizens, without losing control of their alternative approaches for allocating lives. financial and planning resources; and possible, rather than engaging in private To date, discussion topics have included: The ways in which these new funding discussions. Additionally, participants and personal planning systems may be are encouraged to inform self-advocates The advantages and limitations of obstructed or perverted by vested and family members about the discus- different fiscal mechanisms such as interests, and strategies for avoiding or sion group since these constituents are individualized funding and direct countering such problems. critical to the process of transforming payments, and their advantages and the service delivery system. limitations; By the nature of these topics, much of the discussion is fairly technical and This description of the discussion group Various forms of technical planning abstract. However, the dialogue is also appears in the Discussion Section support, such as service/support broker- generally kept "on the ground" by on the Individualized Funding Home age, which people sometimes require in contributors who can speak from their Page. The page is an outgrowth of this order to identify and meet their commu- experience of being on the receiving end e-mail discussion group. The URL is: nity living needs, including managing of individualized funding arrangements, http://members.home.net/bsalisbury/ their supports; or working to develop real alternatives to global/block funding and case The roles and rightful powers of the management or service coordination. various actors in a demand driven system, including people with disabili- Please note that although contributions The discussion group is operated and ties, family members and advocates, to the list frequently refer to issues such moderated by Brian Salisbury in government and state agencies, service as inclusion, self-determination and self- Canada, assisted by Steve Dowson in providers, professionals, brokers and advocacy, this forum is not intended to the United Kingdom. To join the list, other advisers; be a place for general discussion of these please contact Brian Salisbury at issues. While the shift of power to the people who need financial support from the State certainly presents many Brian is a Contract Instructor in the In the context of practical difficulties, on this list, Community Support Worker Program this group's support for the principle of transferring at Kwantlen University College in power is taken as a given. Langley, British Columbia. A former discussions, support for service broker, he has written and the principle of Currently there are over 175 partici- consulted extensively on individualized transferring power is pants from 10 different countries. funding and service brokerage since taken as a given. People are asked to share their perspec- 1984. tives with the entire group as much as OrAS -13 PAGE 9 TASH Newsletter, April 1999 IMPRACTICAL ETHICS

A "Mil" 04. OtAtil At MOM BY MARY JANE OWEN

But in the United States Singer is an Star Ledger said, "I'm very excited. I'm We wish to thank the authOf and the unfamiliar figure. Those familiar with looking forward to being at Princeton National CatholiC Office for .persons with his name are involved with the animal .... Tohaving great, stimulating DiSabilities. w(pi)),-PqBiik'2911.3: rights movement. And the reason for colleagues to work with and excellent WaShington;'ij.t):20017;;'tphOne: (202) ,, their interest is his repeated assertions students." He anticipates that Americans 529=2933; for:kranting imrmissibn to that the life of a young pig is more will be more receptive and less inclined reprint the folloWing artiCle; worthy than that of a child with to find his views offensive than people disabilities since, within his frame of with disabilities in Europe and Asia. reference, the pig is capable of more It would seem the disability commu- pleasure than is possible for a person British philosophy professor Davis S. nity should be in the lead as with a significant disability. Oderberg tried to awaken us to thoughtful Americans learn more the dangers [of Dr. Singer's theories] in a about the appointment of Australia's June 30th (1998) warning in the "most notorious messenger of death," to Washington Times: "Consider the the DeCamp Professorship of Bioethics "Mr. Singer does not tell us evidence. Professor Singer has said in at Princeton's Center for Human Values. who, in his ideal world print, time and again, that babies and This so-called bioethicist denies the where only the worthy will infants with disabilities have no right to essential worth of human life, asserting, live, would make such an life. Indeed, only human beings with "Killing a defective infant is not morally `obviously correct' judge- `lives worth living' are worthy of serious equivalent to killing a person." He ment, but presumably we can protections, and even they have no right considers that such "nonpersons" (a be grateful he was not the to life as such, since talk of rights is, he designation which is also applied to attending physician when says, 'a convenient political shorthand' adults) are living lives not worthy of life Christopher Reeve was for 'the era of thirty second TV news and, thus, can best be eliminated as brought into the clips.' As he argues in his notorious useless "burdens" to society. emergency room, or the book, Should This Baby Live, if a human obstetrician who being has a life not worth living, it can His appearances in Europe and Asia to delivered Helen Keller, or the be permissible, and even sometimes a speak about the positive value of doctor who diagnosed duty, to kill such a one." Oderberg notes, eugenics, euthanasia and his denial of Franklin Roosevelt's polio." "Newborn babies have, in his own the inherent dignity or value of babies, explicit and unbelievable analogy, the children, the elderly and people with same moral value as snails." disabilities, have resulted in dramatic protests by disability advocates and In an August 3rd Wall Street Journal others. There have been cancellations of Princeton alleges in defense of its editorial, Terry Golway quotes from his speechs in which he planned to appointment of Singer that the Singer's book, Practical Ethics: "Al- spread his theories because people in Australian is no activist, just a scholar though people sometimes talk as if we wheelchairs chained themselves to the dedicated to discussing theoretical should never judge a human life as not doors of the lecture halls where he was solutions. But Singer himself acknowl- worth living, there are times when scheduled to disperse his dreadfully edges he seeks to replace the Judeo- such a judgement is obviously correct." negative stereotypes. Upon occasion, he Christian ethic with "new command- Golway then commented, "Mr. Singer has been shouted down. In Germany, the ments," based upon a utilitarian model. does not tell us who, in his ideal world disability community likened his He promotes disdain of traditional where only the worthy will live, would solutions to the "challenges" of spiritual concerns. make such an 'obviously correct' disabilities to those of the Nazis. judgement, but presumably we can Certainly he approves of the same This newest Dr. Death, in an interview be grateful he was not the attending "final solution." with Frederick Kunkie in the July 20th Continued on page 15 BEST COPY AVAILABLE PAGE 14 8 0 TASK News/effer, April 1999 IMPRACTICAL ETHICS

A VI OIL Witil At PH11'm Continued from page 14 JUSTIN DART RESPONDS To PRINCETON ON SINGER'S "ETHICS" physician when Christopher Reeve was brought into the emergency room or the Following is the text of a letter written procedures. Now she is an "A" student obstetrician who delivered Helen Keller April 14, 1999 by Justice for All's in high school, a cheerleader, a journal- or the doctor who diagnosed Franklin Presidential Medal of Freedom recipient ist, a ballerina, and a civil rights leader. Roosevelt's polio." and TASH lifetime member Justin Dart to the Trustees of the Center for Human It is impossible to predict the miracles Professor George Kateb of Princeton has Values, Princeton University, concern- of science. It is impossible to justify sought to justify both Singer and his ing the appointment of Peter Singer. any kind of science and utilitarianism appointment to a chair on human that is not dedicated totally to the values, accusing those who raise Princeton University's Center for sacred value of the continuum of questions about the advisability of this Human Values recently employed human life: individual, family, society, action of not doing "their homework." Dr. Peter Singer as a professor of universestarting always with the Golway replied in a September 12 essay Bioethics. Dr. Singer states "Killing a individual. for America, "Professor Kateb is right in disabled infant is not morally equiva- saying these quotes (Used in an earlier lent to killing a person. Very often it I respectfully implore the Trustees of article critical of Princeton's choice) do is not wrong at all." the Center for Human Values to utilize not do justice to these views. You have its enormous prestige for the value of to read the book (Practical Ethics) to In the context of [Jack] Kervorkian's human life. get the full effect." well-publicized assertion that many Justin Dart people with disabilities are better off Singer's lack of sensitivity about the dead, I am horrified that the prestige complexity of human interaction is of Princeton University is now revealed in his rhetoric. Obviously, he supporting a man who advocates If you agree with Mr. Dart's position, has never shared the joy and wisdom to killing babies with disabilities.. This we urge you to immediately write to be gleaned within a population he message will go out through the each of the following: targets for "justified" extinction: people media to pollute the thinking of every with mental retardation. Probably he person, every family member, every Harold T. Shapiro, Ph.D. has never celebrated the personal government official, every medical President of Princeton University and victories of adults as we learn new ways person, every educator, every poten- Trustee Ex-Officio of compensating for lost functions. The tial employer, who will make deci- Phone: 609-258-6100 American belief that overcoming tough sions impacting the lives of people Fax: 609-258-1615 challenges reveals the most noble of with disabilities. Address: Office of the President human traits has persisted through the One Nassau Hall years. Obviously such a concept has no [Some may ask] "Why should I Princeton, NJ. 08540 place in this Australian's mind-set. sacrifice extra time or resources to Email:[email protected] support these semi-humans, many of whom are better off dead?"Equally Christine Todd Whitman, B.A. Princeton Trustee Ex-Officio If you find Dr. Singer's horrible, the prestige of Princeton will Governor of the State of New Jersey appointment inappropriate, please seem to condone the murder of babies 125 West State Street write of your concerns to the with disabilities in the nations where PO Box 001 Center for Human Values, this barbarian practice still exists. Trenton, New Jersey 08625-0001 Princeton University, 304 Louis Phone: (609) 292-6000 M.A., Princeton, NJ 08544. They My granddaughter, Dana Washington, TDD: (609) 777-1292 have prepared a form letter was born with a seemingly hopeless Send the Govenor electronic mail from response which might make a nice medical situation. The doctors said, the website: souvenir to share at your next "she can not live.If she does live, she www.state.nj.us/governor/govmail.htm disability rights gathering. will not be fully human -- let her go." Her parents insisted on Hail Mary

Continued on page 33

PAGE IS 81 TASH News /e/ %, April 1999 APRIL 1999

Lane Education Service District Para Educators: Eugene, Oregon invites applications for the following positions:

LifeLines Supervisor. Life Skills Education Program Qualifications: in the Classroom 1. Master's Degree required, with preference of focus on students with moderate to significant disabilities. 2. Qualify for Oregon teaching license with special 1999 Trainer-of-Trainer education endorsements. 3. Qualify for Oregon administrative license. Sessions 4. Five (5) years successful experience as licensed staff member in public schools, including 2 years as an Build in-district resources administrator, with preference given to experience with to ensure on-going paraeducator students who have moderate to significant disabilities. 5. Experience in the implementation of state and federal training by attending this 3-day laws regarding the education and required related workshop to become a services for students with disabilities, as well as ©LifeLines trainer. knowledge of budgetary requirements. Teacher. Life Skills Education Program Offered by 02CONISULril\JG: Qualifications: 1. Qualify for Oregon Handicapped Learner License or a Severely Handicapped Learner's License. Orlando, Florida 2. Teaching experience with MSMR students is preferred.

Colorado Springs, Colorado Consultant-Autism Qualifications: Sacramento, California 1. Master's Degree in education. 2. Qualify for Oregon License with an Oregon Baltimore, Maryland Handicapped Learner Endorsement, or Severely Handicapped Learner Endorsement. Portland, Oregon 3. Demonstrated successful experience working with students with autism and students with challenging behaviors. St. Louis, Missouri 4. Experience in developing behavior programs based on positive, non-aversive approaches. Ability to relate Syracuse, New York and communicate effectively with families of students Skokie (Chicago), Illinois with special needs and educational staff. Charleston, South Carolina Positions close: May 28, 1999 Lane ESD is located in Eugene, OR, a city of 125,000 situated at the southern end of the Willamette Valley about 100 miles south See our website for of Portland. Lane County's 4,500 square miles extends from the Pacific Coast to the Cascade Mountains. From Eugene, coastal more details: beaches are one hour away to the west and snow skiing is one and one half hours to the east.

wvvvaconsulting.com 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 L12.CoNisutrilV6 and lane Community College. Education is a high priority for P.O. Box 6049-747 the citizens of Lane County. Apply to: Human Resources, Lane Education Service Katy, Texas 77491-6049 District, P.O. Box 2680, 1200 Highway 99N, Telephone (281) 395-4978 Eugene, OR 97402, 541-461-8202 An official Lane Education Service District application Fax (281) 392-8379 form must be submitted in order to be considered for this position. 82 PAGE 16 TASK News/otter, April 1999 THE EDUCATION CORNER

The following is a rationale for discovery. When children are acting why all children need the arts out scenes from history, singing songs and why children with special about the states, writing a script for a needs, in particular, benefit so greatly puppet show, or painting a mural about from these programs. Why, exactly, The the space program, they are taking new are the arts so important to children? information and making it their own through the arts. The most basic reason that children Importance in fact all individuals need the In the midst of the fun, thinking skills arts is that the arts are valuable in and of Arts of the highest order routinely come of themselves. They are a source of into play. Making decisions and human insight about the world and choices, creating an order, engaging in ourselves. The arts connect us to the Education for problem-solving, experimenting, past, and help us imagine new possi- predicting and discovering outcomes bilities for the future. They give us a All not to mention positive social universal language through which we interactions this is learning at its can express our emotions, our hopes, best. And most important, these are and our dreams. The arts are a Students the precise skills children will need to channel for understanding and succeed later in life. appreciating others, but also provide a way of knowing and defining who we Vct How do the arts particularly benefit are. the child with special needs? Simply stated, the arts provide an arena where BY FLORENCE AVERSA All children need the arts because we every child can participate. At the believe every child, with or without a O'Hearn School in Boston, no one is disability, is a natural artist. Give most All children need the arts because the left on the sidelines, so we have children a brush and paint, they jump arts engage children at their most wheelchairs in dance class, children right in, sometimes literally. Put on personal levelthat of imagination. In with autism taking piano lessons, and some lively music, there's an instant this arena, children have the unique group painting activities where response. Children are excited about power of creating and arranging a world children help each other. When we art, they're enthusiastic, and instantly of their own choosing, whether it be have a show (and we have lots of engaged. For the most part, children filled with family and friends, cartoon them), everyone is included, doing don't have the inhibitions adults often characters, ferocious creatures, or the the most they can. Uncovering experience when faced with an artistic latest superheroes. Using art forms, the hidden talents is the job of every arts challenge such as performing on stage. child is empowered, the creator and teacher, so the focus is always, "What To children, the arts are fun, and mover of all that exists and happens. can you do? How far can you go? children are naturals at it. From a Whether the child is creating this vision How high can you fly?" and then child's point of view the pictures they on paper with drawings or creating an creating plenty of opportunities for draw, the songs they sing, the dances actual environment with toys, clay, children to shine. they perform, and the stories they act blocks, or paraphernalia, for a time it In his writings on multiple intelli- out are as important accomplishments becomes a magic "other place," with its gences, Howard Gardner identified 7 as anything else they do in school. own rules and order and the child is the ruler of this domain.

How does this empowerment through imagination, the arts and the desire to Arts-integrated inclusion create translate into the often mundane programs give everyone the world of curriculum that we as educa- chance to join in, communi- tors inhabit? It is one of our most cate, leave their mark, and powerful tools. An arts-integrated make their statements by curriculum provides another key to learning. The real world we seek to focusing on opportunities teach about with its amazing geogra- and not obstacles. phy, colorful history, and its awe- inspiring scientific frontiers offering a host of real life heroes past and present opens itself up for explcnon and Continued on page 18 PAGE 17 TASH Newsletter, April 1999 THE EDUCATION CORNER

The Importance of Arts statements. Arts-integrated inclusion DIAGNOSTIC Education programs give everyone that chance by focusing on opportunities and not EDUCATIONAL Continued from page 17 obstacles. A disability does not neces- SPECIALIST sarily disable the creative process, but it often requires using special tools, types of intelligence that need develop- modifying the environment, or adapting California's Department ment in every young person. Still of Education, Diagnostic other types of intelligence have been Center Southern Cali- identified. In many schools, most of the day's lessons address only two fornia, seeks a special the linguistic and logical/ mathematics. educator to serve as a But children also need to develop member of a top-rated, musical, spatial, bodily/kinesthetic, transdisciplinary Assess- interpersonal, intrapersonal, and ment Team, providing emotional intelligences. For a child who has difficulty with academics, the educational assessment arts provide other ways to learn by and instructional plan- addressing those other intelligences. ning assistance for For, unlike some areas, in the arts instructional methods. It is up to us as students 3-22 years with educators to find the right tools, unlock there is no single right answer, and a wide range of disabili- thus there are limitless possibilities for the doors, and to empower that success. creativity in every one of us. ties. Services also include direct consulta- For children with special needs, the tion and training to arts also provide a strong motivation to school district educators attempt more difficult things. They Florence Aversa has taught in the Boston Public and families. will push their verbal and motor skills Schools for over 30 years. From a Liberal Arts and typically increase social interac- education at Boston University and the Sorbonne tions with classmates. They become in. Paris, Ms. Aversa added a broad arts reper- The selected candidate totally involved and enjoy the exhila- toire to her professional and personal develop- will have excellent oral ration of having created something ment over the years, studying at Massachusetts and written communi- personal a picture, a dance, a clay College of Art, the Museum of Fine Arts, and at cation skills, a master's figure, or a role in a play. Parents other world-renowned academic and artistic become involved, and get to see their institutions. degree, teaching experi- child, on stage perhaps, and in a whole ence and eligibility for Integrating her background as a classroom new light: happy, successful, proud. teacher and school librarian with her diverse California special Studies have shown that the appeal of experience in the arts, she currently teaches education credential. If the arts is so strong that high school visual arts, music, and theater at the Patrick you would like to work students involved in arts programs O'Hearn School in Boston. Ms. Aversa has been have higher motivation to keep going awarded numerous grants and awards for in a collegial working to school, their drop out rates are programs that employ the arts to illuminate the environment with top- lower, and greater numbers of students general curriculum, to promote literacy, and to notch professionals, graduate. develop a sense of positive personal identity in students. mail letter of interest and resume to: The arts are the most powerful means The Patrick O'Hearn School is an inner-city, full- of communicating our innermost inclusion school where children with moderate Betty Bonier, Diagnostic being. and significant special needs learn in the same Children, in fact all people with classrooms as regular ed students. Featured on Center Southern California, disabilities, have an especially compel- NBC's Dateline for its successful inclusion 4339 State University Drive, ling need to express themselves, for programs, the O'Hearn provides all its students, Los Angeles, CA 90032; their voices are seldom heard. As- from Pre-K to Grade 5, instruction in dance, Phone: 323-222-8090 sumptions are often made about what music, drama, and visual arts throughout the they can't do, while they yearn for an school year opportunity to join in, communicate, leave their mark, and make their /. PAGE 18 64 TASK News/etter, April 1999 CREATING NEW EMPLOYMENT OPTIONS Employment foranyone, anywhere, anytime Creating New Employment Options Through Supported Employment & Supported Self-Employment BY DAVID HAMMIS AND CARY GRIFFIN

The Fire and Energy of Supported realities barely imagined only a decade Supported Self-Employment, Employment and Employment ago. The challenge is, as it has been Business Partnerships, and Consultants from the beginning, to raise our Ownership employment is a raging expectations beyond the word "employ- Moving supported employment into fire, burning bright across the ment." the next century requires new options, world. We have felt it now for new supported employment cultures, 20 years, as it's burned a passion into As we approach the thresholds of the and new tools for employment consult- our souls to strive for employment for trends and complexities of the business ants. Fortunately, the next steps are anyone, anywhere, anytime. It still world, new words are starting to be here today. They have been here for lights up our imaginations with added to our vocabulary. Words like years. Just as supported employment promises and potentials unmet. We profit; partnerships; corporations; s- started from the creativity and visions have seen it in the eyes of the best corporations; limited liability partner- of excellence, the 21st century tools for employment consultants.It is the ships; limited liability companies; new supported employment futures are intuitive energy of listening to someone entrepreneurial; leveraging resources; developing today as employment during a Personal Futures or Vocational small business; women-owned small consultants embrace the business Profile process and really understand- business; minority-owned small world and its array of work and ing the work and employment dreams business; employee-owned businesses; employment options. The only real of another person. corporate culture; re-engineering; barriers seem to be in our beliefs and downsizing; rightsizing; owners; and expectations. Employers are interested Supported employment is networking, shareholders. As we add these words in hiring employees who own substan- marketing, and negotiating with the from the business world to our vocabu- tial employment-related resources, business world for profitable and laries, do we really hear them? Perhaps forming limited partnerships, and exciting employment partnerships. the question is how do we blend the fire supporting sole proprietorships with Supported employment is searching the and energy of our brightest and most people of similar interests and dreams. workplace for the clues of future job creative employment consultants with The business world has been and is carving possibilities and ideas.It is the challenges of the next century? ready to do business. How do we engaging workers, co-workers and What tools and cultures need to be know this? We asked. supervisors to be their best and the developed and promoted as we push the timing of knowing when to assist and boundaries of our existing approaches Do you know that small business is the when to create time and space for to their limits? Where are we going? fastest growing segment of the business natural events and relationships to How do we build on and add to our sector today? Is this a business trend occur. current supported employment that people engaged in the work of strengths? employment should be aware of? We Supported Employment in the Global need to believe that all of the options in Economy of the 21st Century the business world are possible for Supported employment under its people with disabilities, and then act momentum and presence will soon on those beliefs. Acting on those move into the 21st century. Without a "The challenge is, as beliefs makes it possible to achieve doubt, supported employment contin- it has been from the employment for anyone. Taking action ues to validate the beliefs and dreams it beginning, to raise our opens new worlds and options for was founded on. The heroes of expectations beyond the people to become partners in busi- supported employment are the word nesses; sole proprietors; and employees 150,000+ employees, employers, and `employment'." with ownership of vital business employment consultants around the resources, through creating paid work nation creating new social and cultural

Continued on page 20 5 PAGE 19 TASK Newsletter, April 1999 CREATING NEW EMPLOYMENT OPTIONS

Employment for anyone, Nature Center was developed and given perspective has ascribed this characteris- anywhere, anytime to the manager. The plan proposed the tic to it.Neither is employment devel- operation of a sales business at the Continued from page 19 opment a passive activity. Employment Nature Center in return for 10% of the is created through vigorous and relent- profits. The manager reviewed and less creativity, invention, partnership, assisted in refining the business plan collaboration, and hard work. Even in and then submitted it to the Board of the smallest communities, in the most and profits from the needs of the Directors for approval. The business is rural corners of the world, we are business and economic culture in each owned by the person, and we were able finding, as colleague Roger Shelley says, community. If this can happen, as it to clearly "create" a work outcome that there may not be a lot of jobs, but has repeatedly in small, remote following our beliefs of employment for there sure is a lot of work. Skilled communities (such as Plains, Mon- anyone, anywhere, anytime. consumers, families, and personnel will tana: population 1,200; Red Lodge, exploit the reality of market expansion Montana: population 2,300; Alamosa, Another example involves a young man through tenacity and risk-taking. There Colorado: population 10,000; Sterling, in another Montana rural town, where is a conscious choice to be made by each Colorado: population 5,400), it can an employer was approached to develop of us: have the world act upon us, or act happen where you live. a position as an entry level mechanic upon the world. assistant. The employer did not have Employment for anyone. anywhere. an adequate cash flow to hire him. A Making employment happen requires a maim limited partnership proposal was drastic change in daily activities. Recently in a small rural town in written to utilize some funds from a Montana, a "challenging" person who Social Security Plan for Achieving Self First, quit doing things that do not was identified as having multiple and Support (PASS), and to become a part lead to employment (Do endless significant disabilities, shared with us owner of a small segment of the meetings come to mind? How about his work dreams. The place he business. The wealth of knowledge of work readiness training that has identified for his work dreams was a the business world came into play proven to be a dead-end towards local "Nature Center." He took us on again, as the owner advised, amended, community employment?). a tour and clearly demonstrated the and assisted with creating an entirely Second, ask business people how interest and relationships he had new proposal for a sole proprietorship they got into business and what they already developed there. In attempt- for the young man that would work need to stay in business. Act to help ing to develop a job here, multiple based on a $28.00 per hour contracted them find and hire people. objections were offered from the rate for the individual's new small manager, including the lack of funding business. The proposal included a 25% Third, listen to the job seeker. What for new employees. The manager consignment fee for the use of space at do they want to do and how close can would agree to any volunteer help, but the principle owner's building, and a you get by enlisting employers, "had no money" for employees. clear method for sharing of customers friends, family? and workloads. The Business Plan and Fourth, stop making assumptions PASS have been approved, and an based upon behaviors and motiva- absolute "no" from a potential em- tions witnessed in boring, repetitive, The early promises and ployer was turned into a mutually segregated settings. Stop wasting potentials of supported profitable sole proprietorship and time and money on interest invento- employment have become partnership. ries and standardized testing. the reality for thousands Instead, develop situational assess- of people, yet millions of What Comes After What Comes Next ments and job analyses that give real people wait for similar For the past ten years, the field has information with environmental futures in workshops, relevance. day activity centers, and struggled with determining what jobs institutions. people can do; what jobs people should Fifth, listen to yourself. Are you in do; and what jobs are available. The this job for something to do, or to do discussions and hard work are far too something? For most people served often focused on organizational re- in community rehabilitation there is sources, restrictive or limited policy, no Plan B. Most people are stuck in Acting on the belief that it is possible and agency convenience. These are the dead-end day programs, so to create employment for anyone, a wrong concerns and mindset. The business plan for a sole proprietorship employment arena is not a finite in retail sales of items related to the resource, although the human services Continued on page 21 PAGE 20 86 TASK Newsfrlier, April 1999 CREATING NEW EMPLOYMENT OPTIONS

Employment for anyone, anywhere, anytime From the Executive Director general education curriculum. Support- Continued from page 20 Continued from page 3 ing organizations include the American Association of Colleges of Teacher Educators, Arc-U.S., The Beach Center, what exactly is the big risk in chapter. Two chapters, New England the Center for Law and Education, The trying a job, even one you person- Council of Administrators of Special ally may believe to be "unrealis- and Virginia have expressed interest in working with us on this. Education, the Council for Exceptional tic?" Twenty years ago it was Children, Fiesta Educativa, The unrealistic for people with National Association of Protection and significant disabilities to work in International Self Determination Conference: TASH is working with a Advocacy Systems, The National any community job. Today we Association of School Psychologists, know that to be a terrible assump- group of people from the US, Canada and the UK to plan an international the National Center for Educational tion. Do not become the people Restructuring and Inclusion, The that the next generation frowns conference on self-determination for the summer of 2000. Current plans National Down Syndrome Congress, upon for being so "backwards" in the National Councils on Independent its attitudes. All of the pieces to are to coordinate this conference with the International Association for the Living, PEAK Parent Center, and many create quality community employ- others. The work of the center will ment exist now Scientific Study of Intellectual Disability's (IASSID's) Congress focus on three broad areas: planned for August 1-6 in Seattle. e..employment development [ Compiling and synthesizing not] a passive activity. Employ- Olmstead Case: The Olmstead case is relevant research on preferred or ment is created through vigorous an important case which was heard by promising practices that affect access to and relentless creativity, inven- the U.S. Supreme Court on April 21st. the general education curriculum and tion, partnership, collaboration, for achieving improved results. and hard work. The case will determine whether people have a right, under the Americans with Disabilities Act, to live and receive Evaluating current state and local supports in the community. Steve Gold policy regarding access to the general The early promises and potentials of curriculum for students with disabili- supported employment have become wrote an Amicus Brief in support of this right for TASH, ADAPT, and NCIL. ties. This includes an examination of tie reality for thousands of people. yet the linkages among standards, assess- millions of people wait for similar Marcie Roth, TASH's Director of Governmental Affairs and Public Policy ments, accessible curriculum and fitures in workshops, day activity results, and other educational reform centers, and institutions. There are spearheaded the planning for an overnight vigil the evening of Tuesday initiatives that affect the general still so many supported employment education curriculum. promises unmet. It is time to take the April 20th through the 21st, the day the Supreme Court heard the case. About r.ext quantum leap into our shared Developing partnerships with fitures with the business worlds one hundred and fifty disability advocates from across the country spent leaders and key stakeholders in special around us, building on the employ- and regular education, developing ment consultant's energy, dreams and the night in front of the steps of the Supreme Court Building, making sure informational materials, and imple- skills, and create employment for menting a range of dissemination anyone, anywhere, anytime. the voices of the disability community were heard on this important issue. activities with national special and (See related story, p. 8) regular education technical assistance David Hammis and Cary Griffin work with providers to encourage the adoption of the Rural Institute, University of Montana, OSERS Grant: TASH and the National effective practices and policies. 52 Corbin Hall, Missoula, MT 59812. Association of State Boards of Educa- Phone: (406) 243-2454; Fax: (406) 243- tion are developing a response to a If funded, Dr. Richard Villa will serve 4730. Request for Proposals from the Office as Project Director. TASH will act as of Special Education and Rehabilitative fiscal agent and provide the administra- David can be reached by e-mail at tive umbrella. [email protected]. Cary's e-mail Services. The proposal is for a national address is [email protected]. center to provide leadership in improving results for students with disabilities through access to the IAS IAS

PAGE 21 8 7 TASH Newsleller, April 1999 APRIL 1999

The University of Self betermination and Washington Graduate Participant-Driven Program trains teachers to serve the needs Supports of pupils with significant disabilities. My Voice, My Choice: Emphasis on data-based, systematic Nly Voice, My Choice A Manual for Self- A Manual for Self-Advocates instruction referenced to the requirements of natural school and community settings. Advocates By John Agosta, Kern Melda What You M.Ed. degree plus initial teacher Need to Know & Cathy Terrill certification possible. About Participant- Due to funding limitations Driven Supports

and service wait lists the Hunan Contact Dr. Felix Billingsley developmental disabilities Services Research Area of Special Education field is changing. Adding Institute to the changes are evolving 102 Miller Hall, Box 353600 service practices, including University of Washington commitments to self-determination, community integration Seattle, WA 98195 and participant-driven supports. (206) 543-1827 Whatever the changes in your state, self-advocates must influence events. My Voice, My Choice is a must-have e-mail: felixbu.washington.edu curriculum. Use this manual to provide self-advocates with the information they need to help shape the service system. Use it also with family members, board members and service staff. Eight chapters include basic definitions and concepts about EXECUTIVE DIRECTOR how service systems work, along with explanations of participant-driven supports and managed care. Strategies Community Living Alternatives (CLA) is a non-profit human to analyze a state system and influence change are also services agency that supports adults with developmental covered. disabilities in Northern Virginia. We manage 11 homes in Loose-leaf binder includes: (1) over 170 pages of plainly which small groups of people are able to realize their full worded text and study exercises, (2) overhead slides for potential by becoming full members of their community. each chapter (actual transparencies not included). Seeking a highly motivated and committed professional, with an List Price: curriculum & overheads - $179; curriculum established background in the Human Services field. This is the only - $120; overhead templates only - $60. leadership position within CLA, and has primary responsibility for both the direction of the agency as well as the management of daily operation. The Executive Director will be a passionate Order Today:Call: 617-876-0426 advocate for CLA and its consumers. The Executive Director is Fax: 617-492-7401 responsible for maintaining relations with the communities in Human which our homes are located and the families of our consumers. Services Mail:2336 Massachusetts Ave. Identifying new sources of private funding and representing the Research Cambridge, MA 02140 agency in fundraising activities is also a critical responsibility. h(54Institute Candidate will possess at least a Master's Degree in Human Please Pay by Check, Services or related field. Must have at least 5 years experience in Purchase Order or Credit Card the field of Mental Health/Developmental Disabilities with a minimum of 4 years supervisory experience. Experience with State, county or local issues and related associations and Visit our website at providers desired. Send resume or fax to CLA, 100 N. Washing- ton Street, #300, Falls Church, VA 22046, fax (703) 237-1369. http://www.hsri.org/leaders/leaders.html Equal opportunity employer. 88

PAGE 22 TASK Newsletter, April 1999 TASH CHAPTERS

TASIICIKAPTER

KNOSTER CORNERANDTIM GILLES it's that there are BYDONNA BoardMembers TASHExecutive some aspects of a person's life that we have no right to compromise. We VA TASH is striving for positive results in cannot negotiate the size federal legislation. VA TASH continues of an institution: no one to advocate regarding IDEA '97 imple- should live in one. We One of TASH's current priorities mentation and joins International TASH cannot function on a is to provide support to and others to defend against attacks that committee to determine Chapters that are interested in threaten what VA TASH believes to be a who does and who does further communicating their activities and good law. VA TASH has worked in not get medical treatment: local agendas. One strategy along these support of MiCASSA and plans on this everyone does. We lines is to highlight TASH Chapter being an ongoing area of focus. cannot debate who should information in the Newsletter. Specifi- get an integrated educa- cally, we plan to revitalize what was Missouri TASH tion: all must .. ." previously known as the "Chapter News" The MO-TASH conference, "Take Risks column on a periodic basis. The Chapter .. .Ride the River: Building Opportuni- Lou Brown Corner will serve this purpose in this and ties for People with Disabilities and future editions of TASH's Newsletter. Their Families," held on February 18 & While Chapter Presidents will receive 19, was built on a theme that embraces periodic correspondence soliciting TASH values. To live a quality life filled learned that) more people with disabili- information, all TASH Chapter members with family, friends, learning adventure ties are out there in the working force."; are encouraged to submit information for and rich participation in everything "Down to earth topics and discussion consideration for inclusion in the Chapter around us involves taking risks. These (is what I likes most.)"; "The topics of Corner. Relevant Chapter News is to be risks are not only on the part of people the breakout sessions were so good, it submitted to Priscilla Newton. with disabilities, but on the part of all of was hard to choose which one to go to." those around them - professionals, Other evaluations reflected that TASH We are both pleased and excited to friends, and family.It's risky to learn as an organization is not being totally highlight the following information from new things, to try new things, to clear about what its values and its four TASH Chapters. Together, through change. Essentially, navigating the mission are. Some additional com- our international and local efforts, we will "river of life" (at the risk of being a ments may encourage us all to be more continue to make strides towards realiza- little too metaphorical) is just plain clear, more loud, and more emphatic tion of our shared TASH vision and risky. Risks not taken are missed about who TASH is and what it believes. mission. opportunities. This is what the MO- TASH conference was all about and MO-TASH is an organization that Virginia TASH many of the people who attended advocates for the full participation of Virginia TASH has collaborated with the relished in this orientation. people in all aspects of their lives. Commonwealth Coalition for Commu- Institutions and segregated settings are nity (CCC), another kindred grassroots The evaluations turned in included not visions of full participation. MO- advocacy group, and continues to such comments as the following: TASH recognizes that people, profes- bolster efforts to improve services "People with disabilities were wholly sionals and people with disabilities provided by the New River Valley welcome!"; "(I got a) sense of what is alike, are in these settings often because Community Services Board. The CCC ahead."; "Rud Turnbull was excellent!; they are trying to make a difference and VA TASH are collaborating in an We must discuss politics/law."; "The from the inside, or because they have effort to see services become consumer- keynote speakers were overwhelming no assistance to support their choice to driven and supports offered in the and interesting."; "(What I liked most) live, work, and/or play in an inclusive individual's home and community of about the conference was "camarade- community. MO-TASH's role as an choice. In support of these activities, rie."; "New faces, nice crowd"; "(I organization and as its membership is to 89 Continued on page 24 PAGE 23 TASH News/elier, April 1999 TASH CHAPTERS

TASH Chapter Corner Texas TASH can increase the availability Indiana TASH Continued from page 23 of this workshop. Each person who Indiana (IN-TASH) has one top attends pays a registration fee of $30 priority this year. We are focusing on and receives the resource MaxiM: legislative issues. Our board is Linking Functional-Contextual Assess- following the work of the Indiana expect and push for supports for people ment with the Instructional Process, General Assembly and the US Con- who make real, informed choices to take along with supplemental handouts and gress. Our meetings are working the risks and to ride that river. a full day of interactive training. meetings where we share information Participants also have the opportunity and decide on a course of action to Lou Brown, one of the founders of to browse through several portfolio follow. This usually involves a letter TASH said it best when he wrote, developed by parents and educators on writing or phone calling campaign to

. .. it'sthat there are some aspects of a students with different types of disabili- key individuals expressing our (IN- person's life that we have no right to ties; Texas TASH is targeting parent TASH) views regarding the legislation compromise. We cannot negotiate the size of support groups to host these work- or policy issue in question. an institution: No one should live in one. shops. For more information, contact We cannot function on a committee to Mary Fitzgerald, Chapter President of determine who does and who does not get Texas TASH at medical treatment: everyone does. We [email protected]. cannot debate who should get an integrated education: all must. Just because we are overwhelmed, frustrated, and at a loss for something to do, we cannot tolerate shocks, slaps, pinches, or any other obnoxious violation of dignity. Let the moderates, - compromisers, and data worshipers go elsewhere. Let the people of TASH be value- eo based, unbending, tough, aggressive, Al% assertive, graceful, compassionate, and effective." (From "Who Are They and ti - What Do They Want? An Essay on sfr- Orr 4L ISO The History & Legacy of TASH"). 11 rP' the Texas TASH Pennhurst Order Texas TASH is addressing a number of Sfrt% as Given by important issues, not least of which are: Judge Raymond J. One of the country's oldest and Broderick a) Establishment of an "action- largest state institutions for . oriented" executive board. We are people with disabilities was Informative and inspiring moving beyond just holding meetings located outside of Philadelphia, Excellent education/training and discussing state-level problems; Pennsylvania. After more than tool and three decades of demonstra- A must-see for advocates, tions, press exposes and legal b) Participating in a functional- families, students and people battles, Pennhurst State Insti- entering the field - contextual assessment and portfolio tution was finally closed as the development training project in result of an Order to place TO ORDER: Send a check for partnership with LRConsulting, Family- people in the community. to-Family Network and Sam Houston $29.95 plus $4.00 postage and handling made payable to TASH. State University. Texas TASH is hosting The history of this landmark Specify your request for the Saturday training sessions around the event is captured in a new half Pennhurst tape. Mail your check state for parents and educators on this hour video. Judge Raymond J. and request to TASH, 29 W. very important topic as it relates to the Broderick, the judge who issuedSusquehanna Avenue, Suite 210, IDEA Amendments of 1997 and Best the Order, is interviewed in this Baltimore, MD 21204. For more Practices. Several of Texas TASH's video tape by Elisabeth Healey, information, call Nancy Weiss, executive board members participated President of TASH's Executive 410-828-8274, ext. 101 or in Trainer-of-Trainer sessions, so that Board. e-mail: [email protected]. amaPAGE 24 TASH Newsletter, April 1999 NOT DEAD YET

One session in particular, however, lay "I believe that future doctors will be able to lay far beyond all of these more obvious down a sound scientific basis for the theory of benefits, raised far more troubling euthanasia, that the theologian will help by questions, and ultimately struck the incorporating it in his statements and finally deepest chords within me. For me, it that the jurist, as representing the authority of became the bottom line of the confer- the State over the doctor, will again enable him ence and the focus point of what all the to render assistance to mankind, including even rest is really about. Entitled "The Dark such unfortunate creatures...." Side of Benevolence," this session by Karl Brandt, Norman Kunc and Emma Van der Klift Hitler's Personal Physician, Developer of Aktion T-4, The Nazi program for killing challenged the very core of modern people with disabilities, at Nuremburg, 1949 assumptions about individuals with disabilities by exploring current day "Thousands of ethicists and bioethicists, as they questions concerning legalized euthana- BY VICKIE LOUDEN are called, professionally guide the unthinkable sia.It was a difficult session to experi- on its passage through the debatable on its way ence and impossible to do justice to in a to becoming the justifiable until it is finally We gratefully acknowledge the assistance of short article. Acknowledging that from SAFE-Washington State and The Arc - King established as the unexceptional." the start, I nonetheless offer a few pieces Richard John Neuhaus County for granting permission to republish from it, as the challenges it raised are the following article, which originally too fundamental to ignore. appeared in the Winter 1999 SAFE newslet- "The voluntary self-elimination of individual ter, What's Happening. and mortally diseased or crippled lives can only One of the primary points put forth is enhance public health and welfare." that something as extreme as euthanasia Jack Kevorkian, 1990 does not exist in a vacuum. Rather, it It is difficult to adequately describe the impact and benefits of the 1998 emerges from a long set of values and Perhaps these issues may seem far- principles, which gradually and almost annual TASH conference, which fetched, melodramatic, and sensational, imperceptibly justify what might at first took place in Seattle last December. certainly beyond the scope of our work glimpse seem impossible. One such One may note the hundreds of different with schools and classrooms and the principle is that of "help." At first sessions and presenters, catalogue the kids we know. Each of us will decide for glance, "help" is almost universally vast resources available, summarize the ourselves. It can be helpful, however, to considered a good thing. Upon closer inspiring keynote presentations, list the really understand the nature of absolute numerous opportunities for further scrutiny, "help" is revealed to have a exclusion in order to better illumine the broad range of implications, particularly exploration and networking and still struggle for inclusion. In the process, help that is unsolicited. "Attacks of not come close to honoring the actual such a struggle emerges as a far more help" as Norman called them. How experiences available at the TASH profound journey than a simple fight for gathering. In all fairness, one could often does "help" help the helper more more services. Who decides which life that the helpee? How often is it used to also perhaps choose to list elements is valuable, which gifts have worth, and exert control rather than to offer they disliked, sessions that disappointed which are expendable? These issues are respectful assistance? Likewise, "empa- them, or expectations left unfulfilled. currently on trial and have yet to be thy" (putting oneself in another's shoes) Like life in general, the rich and vast decided. What kind of society will be a is universally considered a strength and landscape of TASH affords a full part of growing? Both exclusion and a positive skill. The presenters, how- spectrum of experiences and perspec- inclusion have their costs. Which price ever, cautioned against the limits of tives and becomes what you make of it. will we pay? empathy. A person who does not For me, the new insights into issues like currently have a disability might imagine they would rather die than experience a classroom dynamics, paraprofessional For more information, please *IN profound disability, and they project possibilities and systems change were contact Not Dead Yet at (708) 209- such feelings onto people they see. In undeniably helpful.It was beneficial to 1500 or visit them on the web at reality, they can not know the full hear of the experiences and lessons www.notdeadyet.org. impact of such an experience. As an learned by other individuals around the individual with significant disabilities, country struggling with questions Vickie Louden is a parent in the Norman offered profound testimony as similar to my own, and it was inspiring Lake Washington School District to his assessment of the work of his own and renewing to be challenged by many and one of the coordinators of SAFE life. of the keynote individuals to expand \n Washington. possibilities, take risks and rise to the 1 It can be thought provoking to simply challenge inherent in the struggles of consider some of the following quotes persons with disabilities. that were shared: 91 BEST COPY AVAILABLE PAGE 25 TASK Newsletter, April 1999 CENTER ON HUMAN POLICY

The Center on Human Policy has updated its CAREGIVERS AND information package on women with DIFFERENCE disabilities.In addition to sections concerning AUTHOR: Hillyer, B. general issues, life histories and personal PUBLICATION INFORMATION: 1993 experiences, employment and rehabilitation, motherhood and reproductive rights, Women In B. Hillyer, Feminism and Disability sexuality, sexual abuse, and fiction, the (pp. 176-192). Norman, OK: Univer- updated packet offers a new section covering sity of Oklahoma Press. the topic of women and care. What we offer here is a brief introduction to the topic of University of Oklahoma Press, 1005 women and care, and to present several and Asp Avenue, Norman, OK annotations of books, chapters, and articles 73019-0445 which address emerging issues in the field. This chapter of Feminism and Disability focuses on three main issues This new section was added given Care around caregiving. Hillyer explores the recent attention in disability the relationship of caregiving to studies to the concept of BY:PERRI HARRIS women's role conditioning, to class "women's work." Although there are barriers between caregivers, and to exceptions, in many instances women using caregiving networks to further do the majority of the day-to-day care of explore feminist discussion of differ- people with disabilities, including ence. She discusses how women have personal care, community care and FEMINIST PERSPECTIVES OF been conditioned to be caregivers and inclusion, work in human service fields, FAMILY CARE: POLICIES FOR encouraged to be self sacrificing, and and in GENDER JUSTICE that feminist discourse needs to friend- AUTHOR Hooyman, N.R. & Gonyea, J. challenge these assumptions. ships; yet PUBLICATION INFORMATION: 1995 for the She further asserts that class and status most part, Sage Publications, P.O. Box 5084, Newbury play a role in women's caregiving. She their Park, CA 91359 argues that numerous caregivers are in efforts go financially difficult situations (either unnoticed. Hooyman and Gonyea critically examine because they have given up their jobs Far too often, the work that women do the act of caregiving through a feminist to become caregivers or because they is understood as natural, or as an perspective. Given that over 75% of care are paid caregivers in the low income inherent part of being a woman. How- provided to family members is provided by range) and that these paid caregivers ever, this research demonstrates that women, the authors analyze the impact of are often from ethnic minorities. women as caregivers is not a role that this caring on women's economic, social, These factors are usually different comes naturally for women, it is negoti- and personal experiences. Furthermore, from the women they care for and, ated and maintained by social interac- they examine how changing economic therefore, ethnic minorities or women tions. This social construction of structures, changing families, and the from lower income situations are not women as caregivers continues through- changing workforce have affected the lives seen as valued in a caregiving situa- out their lives, and has powerful of women who provide care. The authors tion. They are not in positions of consequences on the way that their argue for structural changes in the privilege and, therefore, are silenced in work is understood. economy, social institutions, and attitudes the discussions around caring and in order to improve the lives of women. what is best for the person being cared Also included in this section are discus- Hooyman and Gonyea also explore the for. In addition, these women are sions by women with disabilities who implications for social policy if caregiving silenced in the sense that their stories argue that the person being cared for is is defined as a women's role and how and experiences do not easily cross often left out of discussions of caring current social policies are oppressive to class and status boundaries, thereby and caring relationships, and that this women. Their recommendations for making it difficult for the carer and subject needs immediate attention. change include workplace supports, health the person being cared for to under- These writers assert that the discussion care, long term care policies, and economic stand each other. in this area should be located around and social supports for caregivers. equitable relationships between the women who care and the women who Continued on page 27 are being cared for. PAGE 26 9 2 TASH News/eller, April 1999 CENTER ON HUMAN POLICY

Women and Care New Society Publishers, 4527 Springfield INDEPENDENT LIVES? Continued from page 26 Avenue, Philadelphia, PA 19143 COMMUNITY CARE AND DISABLED PEOPLE In this chapter, Morris argues that while AUTHOR Morris, J. feminists have paid much attention to PUBLICATION INFORMATION: 1993 To help deal with this dilemma, Hillyer `community care' policies, they have argues that caregiving networks can be virtually ignored the experiences of Macmillan Press Ltd., Houndmills, used to explore the feminist discussion women with disabilities.She asserts Basingstoke, Hampshire RG21 2XS of difference. She feels that it is crucial that feminist concerns about women's UNITED KINGDOM to be able to listen to other women roles as caregivers must be re-examined caregivers' stories and to value these from a disability perspective. Tradition- This book is a qualitative study which experiences. This in turn could lead to ally, feminists have rejected community explores the experiences of people with consciousness raising groups and care policies which depend on women's disabilities who receive help with daily political action. unpaid labor in the home, thereby living activities. Based on in-depth excluding women from the labor market interviews with 50 people and using a and reinforcing their economic depen- feminist perspective and a disability WHO CARES WINS? WOMEN, dence on men. While these feminists rights perspective, Morris challenges CARING, AND DISABILITY would call for community care in the discourse around community care AUTHOR: Keith, L. residential settings, Morris argues that policies.She illustrates how residen- PUBLICATION INFORMATION: 1992 people with disabilities want services tial care is often replaced by institution- within the community, and therefore alization in community settings, and Disability, Handicap & Society, 7(2), reject the traditional feminist view of further challenges policy makers and 167-176. community care. those who provide care to recognize the basic civil rights of people with disabili- Keith's article provides an argument for The author claims that the differences ties, and that part of their civil rights is research which does not alienate people between these two views is because the to receive physical help. with disabilities, while researching who feminists who are writing and research- cares for them. Too often, she asserts, ing in the area of women and care do feminist research on carers excludes the not actually need physical care them- 'BUT THEY NEED ME!' THE rights, power, and independence of selves. In ignoring the experiences of STORY OF ANNA LONDON people with disabilities and only those women who need care, they AUTHOR: Shoultz, B. depicts them as passive, helpless, and silence women with disabilities and PUBLICATION INFORMATION: 1995 demanding. The author calls for the force them into the role of the other. reconceptualization of research around These feminists only see women as In S. J. Taylor, R. Bogdan, & Z. M. the issue of care to make sure that all carers, not as those being cared for, Lutfiyya (Eds.), The variety of commu- voices are represented, not only the thereby legitimizing one side and nity experience: Qualitative studies of voice of the person giving care. She marginalizing the other. family and community life (pp. 9-22). offers as part of the solution the Baltimore: Paul H. Brookes Publishing concept of citizenship and its affiliation In response to these feminists, Morris Co. with basic universal human rights as a offers a critique from the perspective of way to fill this gap in research and in a feminist with disabilities. She argues Paul H. Brookes Publishing Co., P.O. understanding the caring relationship. that research needs to examine the Box 19624, Baltimore, MD 21285-0624 meaning of 'caring for' and 'caring about,' and especially the meaning of This chapter tells the story of Anna FEMINIST RESEARCH AND home (separated from the political London, a women with a developmen- 'COMMUNITY CARE' feminist critique of the family). She tal disability who gives extensive help AUTHOR: Morris, J. asserts the feminist scholarship needs to and care to others, especially her family PUBLICATION INFORMATION: 1991 understand this issue from a disability members. This is a unique account, perspective and to see as the goal because most of the literature on caring In J. Morris, Pride against prejudice: women with disabilities living in the centers around people without disabili- Transforming attitudes to disability (pp. community and receiving supports from ties caring for people with disabilities, 146-168). Pittsburgh: New Society caregivers whose work is valued, yet this story features a woman with a Publishers. appreciated, and adequately compen- disability who devotes much of her life sated. 93 Continued on page 28 PAGE 27 TASK Newsletter, April 1999 CENTER ON HUMAN POLICY

Women and Care In S. J. Taylor, R. Bogdan, & Z. M. Paul H. Brookes Publishing Co., P.O. Continued from page 27 Lutfiyya (Eds.), The variety of commu- Box 19624, Baltimore, MD 21285- nity experience: Qualitative studies of 0624 family and community life (pp. 47-65). Baltimore: Paul H. Brookes Publishing In this qualitative chapter, Traustadottir to caring for others. Anna, who has Co. explores the gender differences in several disabilities (developmental and caring for a child with a disability psychiatric to name a few), is not Paul H. Brookes Publishing Co., P.O. within the family. She discovered that dependent in any way. In fact, she lives Box 19624, Baltimore, MD 21285-0624 the responsibility for caring is based on independently and has held her family gender. The study revealed the term together because of the work she does The author examines the everyday lives "caring" as a complex phenomenon for them. She babysits for her brother's of families of children with disabilities. that has at least three meanings. three children and her sister's children She explores the ways in which the Caring for: the work, means acquiring so that they can hold down jobs, she family attempts to construct an "ordi- specialized knowledge and techniques helps her mother with her personal care nary" or "normal" family life. which are associated with professional and housework, and she arranges her Traustadottir analyzes the gendered work (not traditional mothering work). schedule around the needs of her family organization involved in constructing The second definition is caring about: members. She also helps her friends, and maintaining a normal family life. the love. This refers to relationships whether it be to give them some money, Through qualitative research based on and emotions. The third definition is a place to stay, helping them with a interviews and participant observation, the extended caring role. The meaning move, or accompanying them to the Traustadottir found that families of of care extends from a woman's own doctor. Anna sees her role in life as one children with disabilities devote much child to broader community or societal of helping others, and she takes this time trying to lead a "normal" family concerns surrounding people with role seriously. She enjoys caring for life. For the most part this meant disabilities and the way they are treated others, but it sometimes leaves her following the traditional family pattern in society. feeling stressed or sad. This is especially of full time wife and mother and obvious when Anna needs care, and working father. She suggests that The author also discusses gender roles only her mother can be counted on to presence of disability in the family and the responsibility of caring. The help. causes parents to compensate by women are usually responsible. This conforming as closely as possible to begins when she decides to keep her The author highlights Anna's personal traditional gender roles. child at home rather than in a residen- history as well as her current situation. tial setting. In many instances, this She also explores Anna's other roles in The author also discusses implications tends to be the mother's decision addition to caregiving. Not only is she for professionals, stating that they need because it is understood that she will a daughter, a sister, and a "carer," she to be aware of individual perspectives of be the primary care giver. In addition also is a community member, a church families. She also addresses how to this work, she is responsible for the goer, and has a number of client roles, broader socio-cultural issues such as housework and other family work. such as medical patient and mental class, race, ethnicity, and gender influ- Furthermore, the baby is not seen as a health system participant. Shoultz also ence the lives of families of children restriction on family life if it only examines Anna's socio-economic status, with disabilities. restricts the mother. However, if the her class and religion, the human family feels restricted, then the situa- service system and its impact on Anna's tion is considered problematic. Some life, and the meaning of being con- THE MEANING OF CARE IN THE women see the job of caring as their nected. LIVES OF MOTHERS OF "natural" responsibility, while others CHILDREN WITH DISABILITIES resist this traditional gender role. AUTHOR: Traustadottir, R. A MOTHER'S WORK IS NEVER PUBLICATION INFORMATION: 1991 The author concludes by stating that DONE: CONSTRUCTING A disability studies need to look at "NORMAL- FAMILY LIFE. In S. J. Taylor, R. Bogdan, & J. A. Racino gender as a critical issue and need to AUTHOR Traustadottir, R. (Eds.), Life in the community: Case examine issues of gender and the roles PUBLICATION INFORMATION: 1995 studies of organizations supporting of mothers and fathers in families. people with disabilities (pp.185-194). Baltimore: Paul H. Brookes Publishing Co. 94 Continued on page 29 PAGE 28 TASK Newsletter, April 1999 CENTER ON HUMAN POLICY

Women and Care community care actually means care by Continued from page 28 women, and she looks at who cares for people with disabilities in the commu- To receive information on nity why these women care, the impact Women with Disabilities: of caring on these women, how to Issues, Resources, Connec- support carers (what their needs are), tions, Revised and Up- dated, write to: CONTRADICTIONS IN CARING and some implications of community care policies. AUTHOR: Walmsley, J. Center on Human Policy PUBLICATION INFORMATION: 1993 ATTN: Rachael Zubal Syracuse University Disability. Handicap & Society 8(2), CAREERS IN CARING: 805 South Crouse Avenue 129-141. MOTHERS OF CHILDREN WITH DISABILITIES Syracuse, NY 13244-2280 Walmsley uses research about the AUTHOR: Wickham-Searl, P experiences of women with learning PUBLICATION INFORMATION: 1992 difficulties and shows how they, like womenwithout disabilities, often find Disability. Handicap & Society 7(1), themselves in caring roles and they, too, 5-18. find this role both sustaining and frustrating. She argues that to attempt The author studied the experiences of to divide the experiences of the "carer" 14 women who were mothers of News from Virginia and the "dependent" is virtually children with disabilities. These Commonwealth University impossible because the relationships are women had extended their family both reciprocal and interdependent. caregiving roles to public work in the Virginia Commonwealth University, The author argues for a new under- disability field in order to help other announces a new employment- standing of the caring relationship in families. Their work often stemmed oriented web site for persons with that the carer and the cared for be from a lack of available services and disabilities. The site is linked from considered together, not in opposition programs for their own children, and GLADNETs page "Research Insti- to one another. their insights here led them to help tutes, Universities, Rehabilitation other parents. Several themes devel- Centers." oped during these interviews. Among THE CARING WIFE: THE them are the reliance on personal On April 2, 1999, The Virginia EXPERIENCE OF CARING FOR experience for guidance in the Commonwealth University Rehabili- A SEVERELY DISABLED caregiving and public work process, tation Research and Training Center HUSBAND IN THE the importance of their mothering role on Workplace Supports publicly COMMUNITY and their children, the realization that introduced its new niche portal, AUTHOR Whalley Hammel', K.R. people with disabilities and their "Your Gateway to Employment for PUBLICATION INFORMATION: 1992 caregivers are not valued in society, People with Disabilities," and the search for legitimization for http://www.worksupport.com/ Disability. Handicap & Society 7(4), their work. 349-362. A portal is a souped-up WEB site The preparation of this article was designed as a hub where users can This article explores the experiences of supported in part by the National gather information, locate Internet wives who assume a caring role Resource Center on Community Integra- resources and branch into related following the onset of a husband's tion, Center on Human Policy, School of sites. The site features information significant disability. Given the fact Education, Syracuse University, through across the following 7 broad catego- that modern medicine has increased the the U.S. Department of Education, Office ries, as well as perspectives from chances of survival of a major injury, of Special Education and Rehabilitative leaders in employment and disability, people with disabilities are returning to Services, National Institute on Disability innovative employers & outstanding their communities and may need care. and Rehabilitation Research (NIDRR), workers: Accommodations; Bridge to The author examines the social expec- through Contract No. H133D50037. No Employment; Disability Manage- tations of women's role in the provision endorsement by the U.S. Department of ment; Law and Policy; Supported of care for people with significant Education should be inferred. The Center Employment; Workforce disabilities. The author argues that on Human Policy subcontracts with TASH Diversity; and Workforce Training. for smcetin this Newsletter. as PAGE 29 9 5 TANI Newsletter, April 1999 UPDATE ON LATIMER CASE Canada's Latimer Case: Implications for Equal Justice BY DICK SOBSEY

On Sunday, October 24, 1993, a People said that she liked the excited After Mrs. Latimer returned at about twelve-year-old girl named voices of the announcers when hockey 1 p.m., she looked in on her daughter Tracy Latimer was murdered in games were on television and loved and found her dead. Mr. Latimer the front seat of a pick-up truck on a bonfires on the family farm. These suggested that she must have died in Saskatchewan farm. Less than two things made her laugh and smile. her sleep. Police became suspicious weeks later, her father confessed the Tracy's life, however, was not all smiles because of his excessive nervousness killing to the police. With few facts in and laughter. Like thousands of chil- and his determination to have his dispute, one might expect an open-and- dren with severe cerebral palsy Tracy daughter's body cremated as soon as shut case, but that is not what hap- had some serious challenges. She had a possible in spite of his wife's apparent pened. lot of difficulty eating. Her severe surprise at the suggestion. scoliosis had required surgery in 1992. Five years later, Robert Latimer has A dislocated hip was causing her pain at Lab tests revealed that Tracy Latimer been convicted twice of murdering his times and her doctor recommended had been killed with carbon monoxide daughter, but has served only a few days another operation to fix it. gas. Although Mr. Latimer initially in jail. He is free on his 1200 acre farm denied any involvement, the evidence awaiting a third trial in a case that has She spent the summer of 1993 in a against him was strong. He was the only already been to the Supreme Court once group home while her mother was in person with opportunity. and is expected to find its way back the later stages of a pregnancy, and there there again. The issues discussed at trial had been some discussion of longer- It was the police who first raised the led to a sharp division between disabil- term placement. Nevertheless, Tracy issue of "mercy killing" in an effort to ity rights advocates and other Canadi- returned home in October of 1993 after ans. Most people with disabilities and the new baby, Lee, was born. Fall was a their advocates believe that the penalty busy time for the family, with a new Advocates for people with for killing a child with severe cerebral baby and harvest season on the farm. disabilities are appalled by palsy must be equal to the penalty for the assumption that killing a killing any other child. The majority of The people at her school said she had child who had cerebral palsy other Canadians see Robert Latimer as a some discomfort, but indicated that would be considered any more hero who saved his daughter from a life Tracy was happy most of the time. Her compassionate than killing any other child. They are of misery. They believe that even the mother kept a journal that frequently shocked that a clear majority legally mandated minimum sentence is used words like "cheerful" to describe of the media and the Canadian too severe. how Tracy was acting. public would assume that Tracy Latimer's life could not The life and death of Tracy Latimer On Sunday, October 24, 1993, Tracy have been worth living and had been back home for only three that the father who chose to Tracy Latimer had significant disabili- weeks. At about 11 a.m., her mother snuff it out should be viewed ties. She could not see much, had severe took her brothers and sister to church as a hero rather than a cerebral palsy, and appeared to have a and Tracy stayed home with her father. murderer. significant cognitive disability, although When they were alone on the farm, it is difficult to measure cognitive skills Robert Latimer carried his daughter out accurately in someone with significant of the house and propped her in a get Robert Latimer to confess. One physical and sensory impairment. When sitting position in his pickup truck. He officer asked, "Is this something you did she died, she was just a month away quickly set-up the pipes and hoses he out of love for your daughter?" Another from her 13th birthday. had prepared in advance and started the stated: "I'm sure this is something that engine, flooding the cab of the truck you had not planned to do or some- She attended a special program for with deadly carbon monoxide. Then, thing that you had not intended to do children with developmental disabilities according to police, he watched his and certainly something you did want at the school that her brother and sister daughter die before returning her body to do, but it's something because attended. She seemed to enjoy many to bed and hiding the evidence. you're a loving type of individual you school activities, especially music, "pet felt you had to do for your daughter. Is therapy," and using the swimming pool. that right?" She also enjoyed family activities. 96 Continued on page 31 PAGE 30 TAN. News/eller, April 1999 UPDATE ON LATIMER CASE

Canada's Latimer Case: appeal of his first conviction to the Implications for Equal "The real Supreme Court of Canada had ordered a motivation for mercy killing new trial and he had been convicted Justice has little to do with the offender's again of second degree murder by a jury. Continued from page 30 feelings of compassion and pity for Under Canadian law, the minimum the victim. The sense of power and penalty was life in prison without control the offender derives from possibility of parole for ten years. On Robert Latimer listened to these ques- killing is usually the real motive." December 1, 1997 the judge who tried tions in silence, but when asked again (Douglas, Burgess, the case, Judge Ted Noble, granted a "Is that right?" he began to weep and Burgess & Ressler, constitutional exemption that would said, "My priority was to put her out of 1992) have sentenced Robert Latimer to one her pain." Shortly thereafter, he de- year in prison plus one year house arrest scribed the details of how the killing on his farm. This extraordinary exemp- had taken place. Although Mr. Latimer tion claimed that Mr. Latimer's sentence, later tried to retract his confession and compassion and should be treated with the lightest allowed by law, was cruel never took the stand to deny or defend greater leniency. and unusual in this case. The judge's his actions in court, he also gave a opinion actually listed a number of videotaped interview to a reporter that Equally disturbing was the fact that a other homicides against people with did not deny what he had done but Canadian Senate Committee filed a illnesses and disabilities, pointing out suggesting that his actions were not report after the trial recommending that that those who killed them typically got criminal. a new class of homicide be legally off with lighter sentences through plea defined in Canada called compassionate bargains or prosecutorial decisions to Mercy killing on trial homicide with no minimum sentence. bring lesser charges. Therefore, he Effectively such a law would create a argued that Mr. Latimer should also be In the videotaped interview played at lesser class of murder for those who kill given a light sentence. Both sides his trial, Robert Latimer said, "I hon- people with illnesses or disabilities. appealed. Mr. Latimer's lawyers argued estly don't believe that there was ever Every scenario discussed as possible that even one year in jail was too much; any crime committed here." Mr. compassionate homicides involves the prosecution argued that Mr. Latimer Latimer's legal representatives argued victims who had illnesses or disabilities. must serve the minimum 10 years. that Robert Latimer acted in his No one suggests compassionate homi- daughter's best interest. They argue not cide because the victim is poor, abused, In November 1998, the Saskatchewan only that we should consider his an object of discrimination, or just plain Court of Appeals upheld Robert intentions, but also that we should unhappy. Latimer's original sentence of ten years assume that his intentions were compas- without chance of parole. Mr. Latimer sionate, even though he remained silent Around the time that Susan Smith has again appealed and remains on his in court. confessed to killing her two children in farm awaiting trial. South Carolina, saying she could not Advocates for people with disabilities stand seeing them suffer through their Equal Protection of the Law are appalled by the assumption that parents' divorce, no one suggested that killing a child who had cerebral palsy her compassion merited a lighter Tracy Latimer was not the first or last would be considered any more compas- sentence. Since intentions can not be person with a developmental disability sionate than killing any other child. directly observed and the burden of to be murdered. Researchers at the They are shocked that a clear majority proof must be on the prosecution, it University of Alberta currently maintain of the media and the Canadian public would be effectively become the respon- data on about 740 cases, many with would assume that Tracy Latimer's life sibility of the prosecution to prove that multiple victims. (See More Victims of could not have been worth living and the killer of a person with an illness or Homicide sidebar on page 32). Most that the father who chose to snuff it out disability could not have been feeling cases get little attention, and often those should be viewed as a hero rather than a compassion. This would be virtually who perpetrate these crimes receive murderer. A poll conducted by a impossible to prove, especially since the sympathy rather than punishment. What newspaper during the first trial indi- accused has a right to remain silent to brought this case to prominence? cated that 95% of readers supported prevent self-incrimination. Robert Latimer's killing of his daughter. While support has declined, a January The most disturbing aspect of the case 1999 Angus Reid poll found that 73% of by far, however, came after Robert Canadians still believed he acted from Latimer t second trial. A February 1997 Continued on page 32 PAGE 31 9 7TASH Newsletter, April- 1999 UPDATE ON LATIMER CASE

Canada's Latimer Case: nity Living became actively involved and a ten year study by the FBI's leading were granted intervenor status for some criminal profilers and some of America's Implications for Equal appeals. This status recognized their leading criminologists: Justice legitimate interest in the matters before Continued from page 31 the courts and allowed input on some The real motivation for mercy billing has issues. little to do with the offender's feelings of compassion and pity for the victim. The One important factor was a deliberate Some child abuse prevention organiza- sense of power and control the offender attempt by Mr. Latimer's lawyers to tions and human rights organizations derives from killing is usually the real create public sympathy and to try the supported the efforts of disability rights motive (Douglas, Burgess, Burgess, & case in the media as well as the court- organizations in asking for equal Ressler, 1992). room. While Mr. Latimer has lost so far protection under the law. Robert Latimer in the courtroom, he has won wide- is now awaiting further appeal. The spread support from the public and issues are straightforward. If he wins, media. In fact, shortly after his arrest, parents have a right to kill children with Mr. Latimer's lawyer indicated that disabilities if they claim that they do it building public sympathy for his client because they believe it is right. If Mr. would be a critical strategy in the case. Latimer loses his appeal, Canada will have moved one step closer to equal SIDEBAR Another factor in the widespread protection under the law for people with attention this case received was the developmental disabilities. nature of the defense. In many other More Victims of Homicide cases involving the killing of children While the Latimer case highlights these with disabilities by parents, the defense issues, they are not unique to Canada. argues that the parent was overwhelmed Tracy Latimer is only one of many There is widespread and growing public people with developmental disabilities by stress and made a bad decision. This support for so-called "mercy killers" who die as a result of homicide, neglect, allows judges and juries to acquit based on the myth that these are or abuse. The following provides a few without endorsing child murder. Robertcompassionate acts. Those who have examples of other cases. Latimer's defense was that he was closely studied "mercy killings" disagree. rational and made a good decision. According to the Crime Classification Casey Albury was a young woman Acquittal requires endorsing his actions Manual that was developed as a result of and implicitly endorsing the murder of with autism. Her mother strangled her other children with disabilities. Whether after trying unsuccessfully to persuade it was Mr. Latimer's decision or his her to jump off a bridge in 1997. Her lawyers' to use the rational-decision Sources mother was originally sentenced to four defense is unclear. It is much less likely years, but the sentence was reduced to to result in acquittal, but it does ensure Council of Canadians with 18 months by a New Zealand judge media and public interest. Disabilities. (1998). The saying that since the case was excep- Latimer Case: The reflections tional, there was no need for a deterrent The decision to try this case on the of people with disabilities. sentence. merits of mercy killing also led to Winnipeg: Author. another factor that built public interest. Joseph "Jojo" Bacaylan, a 29-year-old Advocates for disability rights organiza- Douglas, J.E., Burgess, A.W., resident of Agnews Developmental tions and advocates for the "right to die" Burgess, A.G., & Ressler, R.K. Center who had significant and mul- movement were drawn into the case. (1992). Crime Classification tiple disabilities, including mental The executive director of one dying- Manual. San Francisco: retardation, died of multiple stab with-dignity group suggested that living Jossey-Bass. wounds and a beating by an institu- with Tracy for 12 years was already tional staff member. According to enough of a sentence for Mr. Latimer. Her Majesty the Queen and California medical authorities, institu- Statements like this clearly drew Robert W. Latimer. Court of tional physicians failed to treat his disability rights groups into the fray. The Queen's Bench for wounds and filed a false report listing Council of Canadians with Disabilities, Saskatchewan, Judicial his cause of death as "cardiopulmonary the Saskatchewan Voice of Persons with Centre of Battleford. arrest of unknown cause." Disabilities, People First Canada, and the Canadian Association for Commu-

Continued on page 33 PAGE 3298 TASK News/eiler, April 1999 UPDATE ON LATIMER CASE

JUSTIN DART RESPONDS Louis "Buddy" Musso was a 59-year-old Canada's Latimer Case: TO PRINCETON ON Implications for Equal man with a developmental disability in Texas. In 1998, five people were charged SINGER'S "ETH ICS" Justice with beating him to death over several Continued from page 32 Continued from page 15 days as a punishment for breaking a Christmas ornament.

Lenka Orilikova had multiple disabili- Princeton Trustee and Alumni ties. She was 14 when her father who United States Democratic Presidential was fighting with her mother turned Candidate Bill Bradley, M.A. Katy Lynn Baker was a 10-year-old his rage on Lenka, stabbing her to death Bill Bradley for President girl with Rett syndrome in British in 1998 at their home in Madison, 395 Pleasant Valley Way Columbia. She starved to death in 1996. Wisconsin. West Orange, NJ 07052 Her death was ruled a homicide but no 973-731-2100 charges have ever been filed. Matthew Brent Richmond was 12 and 888-643-9799 had a developmental disability. On New [email protected] Robert Ballard was a 33-year-old man Year's Day 1997, he soiled himself. To with a mental disability who lived in the punish him, his mother's boyfriend held Princeton Trustee and Alumni small town of Salina, Oklahoma. Two him in a tub of scalding water. He died Tenn. Senator William H. Frist, M.D. teenagers broke into his house in 1994 of extensive burns. The case led to 416 Russell Senate Office Building and beat him- to death with the tougher laws for killing a child in Ohio. United States Senate electronic communication device that he Washington, D.C. 20510 used. Amy Robinson was riding her bicycle Phone number: 202/224-3344 to the grocery store where she bagged TDD number: 202/224-1911 Charles Antoine Blais was a six-year- groceries when two men she knew Mailing Address: Senator Bill Frist old boy with autism when his mother slightly offered her a ride in a pick-up United States Senate drowned him in their bathtub in truck on February 15, 1998 in Arling- Washington, D.C. 20510-4205 Montreal. She was allowed to plead ton, Texas. They did not want sex or [email protected] guilty to manslaughter and given a 23 money from Amy; they simply tortured month suspended sentence. and killed her. According to their United States Republican Presidential videotaped confession, they "busted out Candidate Kay Lynn Kuffer, had multiple laughing" when she died. One perpetra- Steve Forbes - (Bedminster, NJ) disabilities. She was 15 years old and tor was sentenced to death. A second Forbes 2000, Inc. weighed 15 pounds when she died of young man is awaiting trial. 209 Madison Street starvation and dehydration in Janesville, Alexandria, VA 22314 Wisconsin, in November 1998. She did Toll Free 1-877-837-8383 not attend school and social services [email protected] had lost contact with her family. She had not been to the doctor in 6 years. Her Dick Sobsey, Director, JP mother was charged with neglect but Das Developmental or for more information contact: found incompetent to stand trial. Disabilities Centre, University of Alberta, Fred Fay Ronald Lambert was only 11 years old 6-123 Education North, Chair, Justice For All when an aide at the St. Amant Centre in Edmonton, Alberta, T6G [email protected] Manitoba smothered him in 1977. The 2G5 Canada. Phone: HTTP://www.mailbot.com/justice aide confessed in 1995 and was sen- (780) 492-3755; fax: tenced to two years in prison. Ironically, (780) 492-1318; he climed that he had already confessed e-mail: to the institutional administration [email protected]. shortly after committing the crime but they chose to ignore it.

BEST COPY AVAILABLE PAGE 33 93 TASK News/eller, April 1999 MARK YOUR CALENDAR

1999 Calendar of TASH Chapter and Member-Sponsored Conferences

JULY OCTOBER 1999 Toronto Summer Institute 8th Annual St. Amant Centre July 3-9 Conference "20th Century Trends, Toronto, Canada 21st Century Services?" Contact: Inclusion Press October 7 and 8 Phone: 416-658-5363 Canadlnn, Winnipeg, Manitoba E-mail: [email protected] Contact: Colette Choquette Phone: 204-256-4301, ext. 298 Project CHOICES Summer Institute: "Kids: Our Future" July 22 and 22 DECEMBER Crowne Plaza Hotel, Springfield, Illinois NE Contact: Project CHOICES Where the Rubber Meets the Road Phone: 630-778-4508 TASH-NE Conference E-mail: [email protected] June 11-12 Lake Morey Inn, Fair lee, Vermont CAL-TASH Summer Symposiums in Annual TASH International Contacts: VT/Susan Yuan, Santa Barbara Conference E-mail: [email protected] July 26-27 "School Inclusion" "TASH 2000 - Our Turn Now" NH/Mike Shields, July 29-30 "Positive Behavior December 8-11 E-mail: [email protected] Support" Chicago Hilton and Towers Contact: Eileen Medina Contact: Kelly Nelson Eleven State Northeast Atlantic Phone: 805-967-2042 Phone: 410-828-8274, ext. 105 or Conference on Self-Determination E-mail: [email protected] 1-800-482-8274, ext. 105 June 25-26 E-mail: [email protected] Valley Forge Sheraton, Valley Forge, PA Contact: Speaking for Ourselves SEPTEMBER Phone: 800-867-3330 National Spinal Cord Injury E-mail: [email protected] Association Annual Meeting and Education Conference Do you have an upcoming TASH chapter September 26-29 meeting or member-sponsored conference Washington, D.C. Marriott - that you would like to announce in the Metro Center Newsletter? Send notice of the conference Contact: Denise Marshall to Denise Marshall at [email protected] Phone: 410-828-8274, ext. 103 at least 6 weeks before the event date. E-mail: [email protected] We will make every effort to include the event in the meetings calendar.

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I e II I

" Most people with disabilities will experience significant abuse, violence, or neglect sometime in their lives and people with disabilities are more than twice This Instituteis designed to bring together internationally known experts in the field of abuse, neglect, and victimization of individuals with devel- as likely to opmental disabilities with researchers, practitioners, policymakers, andcon- experience crimes sumers to discuss the latest in research and best practices. For three days, on the beautiful New Hampshire seacoast, learn about important information related to of violence as the victimization of individuals with disabilities; and policy and practice, initiatives to create safe and secure communities for all. people without Featured Speakers: disabilities." Dick Sobsey, Ph.DDavid Finkelhor, Ph.D Patricia - Dick Sobsey Sullivan, Ph.DRuth Ryan, MD. Deb JonesJohn Knutson, Ph.DTanis Doe, Ph.D Forregistrationinformationcontact Debat TheInstituteon Disability/UAP603.228.2084or visit us on the web at http://iod.unh.edu

I p I 101 BEST COPY AVAILABLE PAGE 35 TASK Newsletter, April 1999 TASH NEWSLETTER

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. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President Tim Knoster torial judgement in selection of materials. Donna Gilles, Chair of the Executive Committee 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 James Meadours 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- Patrick Schwarz 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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TABLE OF CONTENTS About 49% of our members are members of International TASH only; From the Executive Director Page 2 about 34% are members of both the 1999 TASH Annual Conference Page 4 international organization and their local Students Talk About Their Roles chapter, and 17% are members of only in Transition Planning Page 8 their chapter. Community-Based Employment ... Page 11 Workforce Investment Act Page 15 Outdoor Recreation Regulations Page 19 Approximately 52% of our members Ensuring Access, Equity and Quality pay the regular, individual rate; about in School-to-Work Systems Page 21 24% pay the reduced rate; about 20% are National Efforts to Promote agency/organizational members; approxi- Conversion Page 23 From the Executive Director mately 2% have a family group member- Recreation in School Page 26 BY NANCY WEISS ship and about 2% are lifetime members. National Supported Employment Consortium Page 28 The largest single group of members All Kids Seek Ordinary Goals Page 29 Who are our members and how are parents/family members (585). Close behind are educators (571) and students can we best serve them? (555). We have 200 university-level professors as members, 190 school ver the past few months we administrators, and 181 staff develop- TASH (formerly The Association for Per- have learned a lot about who ment specialists. One hundred and fifty- sons with Severe Handicaps) is an inter- our members are, why people five of our members are in the early national advocacy association of people 0 childhood field and 149 of our members join TASH and the additional benefits, with disabilities, their family members, information, and supports they are are advocates or friends. Public policy other advocates and people who work seeking. We first analyzed our member- advocates comprise 131 of our members in the disability field. TASH actively pro- and 125 work in the adult services field. motes the full inclusion and participa- ship data. Here is what we learned: tion of persons with disabilities in all as- Continued on page 3 pects of life.To receive an information 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]. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and MISSION STATEMENT 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] Stretchingthe 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] 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, (410) 828-TASH, Ext. 100 or [email protected] For information on governmental affairs or fundraising/development, call: Forging new alliances that embrace diversity; Marcie Roth, Director 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 and inequities; 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 (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://vvww.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 Promoting excellence in services. 210, Baltimore, MD 21204, Auk. Newsletter Editor. Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 1 n ATASH Newsletter, May/June 1999 FROM THE EXECUTIVE DIRECTOR

Who are our members and how can Finally, in our quest to get to know our workshops members listed: self-determi- we best serve them? members better, we sent out a survey nation; assistive technology; supported Continued from page 2 with every membership card for a year. employment; community living issues; We received 971 responses. information on related services; home- ownership; facilitated communication; We have 104 social workers as members, We asked members to specify which transition planning; early intervention; 94 behavior specialists, 85 people who benefits inspired them to join TASH or sibling issues; accessible transportation; work in supported employment and 83 renew their membership. The Newslet- international issues; recreation; alterna- psychologists. Eighty-five TASH ter got the most votes. JASH came in tive assessment; guardianship issues; members are government employees, 71 second. Other benefits, in the order in peer advocacy training; action research; are self-advocates and 69 members are which they were selected were: issues of aging; managed care; issues case managers. We have 60 regular affecting people who are dually diag- educators as members, 59 speech/ Current Information on Best Practices; nosed; staff training; sexuality and language pathologists, 34 OT's or PT's, sexual preference; behavior support; and 31 personal assistants and 28 members Legislative Updates; augmentative communication. are in a legal services field. The Annual Conference Discount; Finally, when asked what current issues About 92% of our members are from they would like to see the TASH mem- the U.S., with members from every state Grassroots Advocacy Efforts; bership addressing, the following and from Puerto Rico, Guam and the concerns were named: changing TASH's Virgin Islands. Another 4% are from Information and Referral; name, MiCASSA, assisted suicide, family Canada. The remaining 4% of members support issues, inclusion, criminal are spread around the world, represent- Legislative Representation; justice issues, inclusive recreational ing 33 other countries. The countries opportunities, IDEA implementation having the most international members Discounts on TASH Materials and and enforcement, and waiting lists. are Australia (62) and Japan (38). Merchandise; and, What are we going to do with all of the The second method we used to learn Chapter Activities new information we've learned about about our members was an analysis of our members? The first step is that all our members' interests. New and When asked what additional member of this information will be reviewed by renewing TASH members are asked to benefits they would like to see in the our Membership Committee and the indicate the committees in which they future, members suggested Board. We will select a number of goals would be interested in participating. based on what we know about why Here are the results: regional workshops and conferences; people join TASH and the additional benefits, information, and supports they continuing to enhance the web site; are seeking. Information on topics Nuniber:ofTASH:Meinbers ing members would like to see covered in Interest in Various.,TASI-17dpics making professional liability future TASH publications, conferences insurance available; and workshops will be forwarded to the EthicatiOn staff and committees working in these 01:500*.PRt00h00.;, more legislative updates; areas. Community Living; Early: Childhood improving opportunities for member The membership committee welcomes Family; . Persons with Special iieititl(care*-' -eus networking; new participants. If you have an interest

PerSininel: PiiParatioit 7: . 34 in addressing the needs of members, Iritegiated.:ErtiployMerif inCI:Careers 33 a job network, a membership contact Rose Holsey (410-828-8274, ext. Governmental 31 directory; 100 or [email protected]) for informa- Chapter, Ofieraiink:'Goininittee tion on upcoming committee meetings. Leisure:anct Recreation providing information on grants that International. Issues-. . Multicultural: Issues are available; and ParaecitiCatoriSstiei- Related ServiceS more chapter activities fA Peace PubliCations When asked what topics members Membership Sexual Orientation 8 would like to see covered in future BEST COPY AVAILABLE Media 6 TASH publications, conferences and 1 0 5 PAGE 3 TASH Newsletter, May/June 1999 1999 TASH ANNUAL CONFERENCE

1999 TASH KEYNOTE SPEAKERS

THURSDAY, DECEMBER 9, 1999

Rich Villa As the President of Bayridge Consortium, Rich provides training and consultation in areas such as collaborative teaming, creative solutions, systems change, and inclusion. He also gives technical assistance to school districts, departments of education, and advocacy groups across the country and around the globe.

'TASH 2000: Our Turn Now" Diane Coleman Chicago Hilton and Towers December 8-11 Diane has served on the governing boards of national, state and local disability-related organizations and policy-related committees, has authored numerous articles on disability-related topics and spoken Tentative Conference Agenda extensively on topics pertaining to disability rights and health care Pre-Conference Activities issues. Diane has worked as an organizer for ADAPT and is founder of Not Dead Yet, a national grassroots disability rights organization. Wednesday, December 8, 1999 7:30 AM - 8:45 AM TASH Tech Registration Kyle Glosier 9:30 AM- 4:30 PM Club TASH Day Care/Youth Activities Kyle is a middle-school student and self advocate who uses augmenta- 9:00 AM - 4:00 PM TASH Tech Workshops tive communication. Having spoken at conferences and rallies since he 9:00 AM - 4:00 PM TASH Development and Leadership was a young child, Kyle is now an experienced national and interna- Training tional speaker. Kyle is also an active member of ADAPT. 2:00 PM - 8:00 PM TASH Conference Registration 4:30 PM - 5:00 PM Welcome to TASH Jeff Moyer 5:00 PM - 7:00 PM Opening Reception in the TASH Jeff is an internationally known disability advocate, songwriter, Exhibit Hall performer, author and leader whose work on the cutting edge of the disability rights movement has spanned over 25 years. Jeff's work Thursday, December 9, 1999 challenges, uplifts and unites communities through recognizing the essential contributions of individuals, families and all members of the 7:30 AM - 1:00 PM TASH Conference Registration teams that advocate, support and educate. 7:30 AM - 9:00 AM TASH Exhibit Hall Open 8:30 AM - 5:45 PM Club TASH Day Care/Youth ActivitiesFRIDAY, DECEMBER 10, 1999 8:30 AM - 10:00 AM General Session 10:15 AM - 5:30 PM Conference Sessions and Poster Anne Donnellan Presentations Anne is a Professor in the School of Education at the University of 11:00 AM6:00 PM TASH Exhibit Hall Open Wisconsin, Madison. Her keynote address, titled "Absence of 5:30 PM - 7:00 PM Reception Evidence - Not Evidence of Absence," will discuss how 19th century social biases and 20th century testing continue to condemn people Friday, December 10, 1999 with mental retardation, autism, and other disabilities to second class 7:30 AM - 11:00 AM TASH Conference Registration citizenship. Ann will inspire us to lead special education, rehabilitation and human services into the next millennium with creative new 7:30 AM - 10:30 AM TASH Exhibit Hall Open approaches to understanding and serving people who have been 8:30 AM - 5:45 PM Club TASH Day Care/Youth Activities labeled. 8:00 AM - 10:15 AM Conference Sessions and Poster Presentations Rosangela Berman-Bieler 10:30 AM - 12:00 PM General Session Founder of the Independent Living Movement in Brazil, Rosangela is 12:15 PM- 4:45 PM Conference Sessions and Poster also the founder and current president of the Inter-American Institute Presentations on Disability (IID). Through her work with HD, Rosangela works to 1:00 PM - 7:00 PM TASH Exhibit Hall Open promote cooperation for the development and empowerment of 5:30 PM - 7:00 PM Reception people with disabilities in the Inter-American region, as well as 6:30 PM - 8:00 PM TASH Open Forum and Business Spanish and Portuguese speaking countries of Europe and Africa. Meeting Rosangela has been a quadriplegic since an automobile accident in 1976, and uses a wheelchair. Her keynote address will focus on the concept of "inclusion" as a new paradigm for the millenium and on Saturday, December 11, 1999 the importance of international cooperation regarding disability issues 7:30 AM- 9:00 AM TASH Conference Registration worldwide. 7:30 AM - 12:00 PM TASH Exhibit Hall Open 8:30 AM- 1:00 PM Club TASH Day Care/Youth Activities (4 8:00 AM - 12:45 PM Conference Sessions , PAGE 41 06TASK Newsletter, May/June 1999 Mail form to: TASH, 29 W. Susquehanna Avenue, TASH Office Use Only Suite 210, Baltimore MD 21204 or TfiS11 Conference Org Registration Fax form to: TASH, (410) 828-6706 Gust "Tani 2000: Our Tarn How" Questions? Call: 1-800-482-TASH (8274) Reg Email: [email protected] Rec Chicago Hilton , andlbwers TDD (410) 828-1306 lnit December 8-11, 1999 This form can also be found on our website www.tash.org

agency / Organization / School Information: (if applicable)

Name of Agency/Org/School:

This organization is a current TASH Member #

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Address:

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Is this address the billing address? Yes No If no indicate billing address and contact person with phone # here:

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This address is home work school other Please send my confirmation via email fax mail

Work Phone: Home Phone:

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Tf11511 MEMBERSHIP: International International *Chapter & Chapter I am renewing my membership now Mem. # Only Only Individual $103 $88 $33 I am becoming a member now If you are joining with 3 or more people from the some Reduced Fee (circle one) $60 $45 $20 agency/organization/school take $20 off each person's Self-advocate/Parent/Student applicable rate (must be in the same envelope)! Family $156 $136 $66 New And Renewing Members please select Organizational $230 S200 $70 membership type (and add rate on other side) -c Lifetime $1000 N/A N/A

attributes(please circle all that apply) 1. Administrator/Adult Services 11. Legal Services Provider 21. Social Worker 2. Administrator/Education 12. OT/PT 22. Speech/Language Pathologist 3. Administrator/Other 13. Parent/Family Member 23. Special Education Teacher 4. Adult Service Provider/Staff 14. Personal Assistant 24. Support Specialist 5. Advocate/Friend 15. ProfessionaVPublic Policy Advocate 25. Staff Development/Trainer 6. Behavioral Specialist 16. Professor/Instructor (College/University) 26. Student (College/University) 7. Case Manager 17. Psychologist list ID: 8.Early Childhood Services 18. Regular Education Teacher/Admin 27. Supported Employment 9. Educator/Teacher (K-12) 19. Related Service Provider 28.Other 10. Government Personnel 20. Self-Advocate

accessibility and additional Information Requests Sign Language Interpreter Please indicate dates and times needed:

Please list any accessibility/ ADA accommodation needs: Please note: information about accessibility at the hotel and surrounding vidnity will be available at the information desk on-site) Child Care/Youth Activities (Note: you must fill out an application in advance to register. Space is limited)

Roommate Referral Program I would like a mentor to help me get acquainted with the TASH Conference while I am on-site I have been at the TASH Conference before and would agree to be a mentor to help others while on-site

Chapter Only Membership does not qualify for reduced conference registration rates. 1 PAGE 5 '"TASHNewsletter, May/June 1999 1999 Tf liSii Conference Registration Payment Information (Includes Opening Reception on 12/8/99 and Conference Activities 12/9-12/11/99) YASH'Internatitinal.Minibeis: d.

Individual $219 Student $169

Parent (non-professional) $ 49

Self-Advocate $ 49

One Day Only Thurs Fri Sat $119

iTtliin-Members:,,, .

Individual $329 Student $249 Parent (non-professional) $ 79 Self-Advocate $ 79 Enter Applicable

One Day Only Thurs Fri Sat $169 Registration Cost Here -, S

Discounts: (only one discount can be applied)

Earlybird Registrations Subtract $20 (Must be sent with payment by September 24th)

Groups of 5 or more registering for full conference Subtract $20 per registrant (all registrations must be in the same envelope)

A direct support staff registering with a self-advocate Subtract $50 from the staff person's registration

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or a regular educator and a paraeducator) Enter Applicable Discount Here -, $ ( )

After November 12, 1999 registrations will be on-site only and a $40.00 late fee must be added. To ensure that your Enter registration process goes smoothly and to save money we encourage you to register early. If you do register Late on-site you must bring this form and payment or authorized PO with you at time of registration. Fee Here

Enter Total Conference Registration From Above Here

New This Year - I would like to order the 1999 TASH Conference Yearbook

(available in June, 2000) Order with your registration and save 510.00 $05:e6 $25.00 -0 S

TASH Tech Pre-conference Workshops (Wednesday, December 8, 1999)

1st (bake: TASH Tech Session # PLEASE BE SURE TO SPECIFY YOUR CHOICES! 2nd Choice: TASH Tech Session # (see page # 7)

TASH Member $65.00

Non- Member $85.00

Self-Advocate / Parent (Non - Professional) $40.00 Enter TASH Tech Fee Here -+ $

TASH/HADD Symposium $85.00 Eater Symposium Fee Here + S

TASH Membership Dues from Front Side $ Less $20.00 for three or more Joining as Tash Members from same Org/Agency/School $ I ) Enter Total Membership Cost Here -, $

Additional donation to support a self advocate to attend the conference $5 SIO $20 Other $

TOTAL AMOUNT ENCLOSED (add all applicable costs): S

Payment Terms: Registration will not be accepted without payment by check offirinl nurchnsa order nr mat cord nnthnrimtinn Plenca note dint nmnnont mmt he inII C Fenwk Anil/ A C9C nn ...... ,:-.. c... .,PILI added to cancellations received after November 12, 1999, or for purchase orders not paid prior to the conference. No refunds will be given for cancellations after November 12, 1999. S25.00 fee for returned (becks or unauthorized charges.

Check Endosed Purchase Order / State Voucher no.

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PAGE 6 108 TASK Newsletter, May/June 1999 1999 TASK TECKS

Preliminary Schedule of T-5 Functional-Contextual Assessment T-10 Organizing for Disability Rights and Portfolio Design and Inclusion TASH TECH Mary Fitzgerald, Susan Catlett, Eve Cugini, Steve Taylor, Bonnie Shoultz, and Others Pre-Conference Workshops Charlene Comstock-Galagan, Sharon Lynch This workshop will examine a range of This highly interactive session will explore grassroots community organizing strategies the process of functional-contextual assess- that people with disabilities, family mem- TASH Tech Pre-conference Workshops are full day, bers, and advocates can use to promote the in-depth sessions held on Wednesday, December 8, ment as it relates to evaluation procedures full participation of people with disabilities 1999 Registration is in addition to the full under IDEA 1997. The process emphasizes a in community life. Topics to be discussed conference. Be sure to arrive early to participate team approach (including parents), careful include: building coalitions with disability in one of these dynamic and informative sessions! examination of current data, and data collection strategies that yield meaningful and non-disability groups, developing position statements, sponsoring public T-1 Expanding & Deepening Relation- information which links to appropriate IEPs. Participants will also learn about and interact forums and other actions, working with the ships between Community Members & media, organizing petition drives and letter- Adults with Developmental Disabilities with student portfolios designed by parents. T-6 Emergency Management writing campaigns, and other strategies. Angela Novak-Amado Gary Lavigna T-11 The Behavior-Communication Many agencies have begun working on Link building friendships between adults with When punishment is no longer used to manage behavior, people ask, "What do we do Kim Davis, Susan Dixon disabilities and community members. This when the behavior occurs?" "What do we do Behavior is often overlooked as a legitimate session will be for staff who have already in a crisis?" This seminar will provide an means of communication. This workshop initiated bridge-building efforts to: 1) share overview of emergency management and will provide information to families and their experiences with others, 2) find individuals who support people with avenues for going beyond barriers, and 3) reactive strategies that might be used as part of a complete support plan. disabilities to build an understanding of how discover ideas for expanding and deepening different behaviors are communicative, to existing relationships. T-7 Whole Brain Learning: Inclusive Academics, Music & Games understand what their messages might be T-2 Creating Field-Based Networks to and how to begin to interpret those mes- Meet the Personnel Needs of Students Robin Smith, Kate Farrar This highly participatory workshop will sages. with Significant Disabilities and Deaf- T-12 Civil Rights, Decision-Making and Blindness emphasize use of multiple intelligences to enhance academic and social engagement and Guardianship: Melding TASH Values Susan Bashinski, Margy Hornbach, Donna establish a competence-oriented learning with Best Practices Wickham, Gwen Beegle, Lynette Lacy community. Participants will experience Dohn Hoyle, Kathleen Harris, Joel Welber, Sally Kansas has implemented an innovative music, body sculpture, and kinesthetic games Burton-Hoyle, Patricia Dudek, Mayer Shevin approach to providing exemplary education to support academics in inclusive classrooms With the establishment of guardianship for to students with significant disabilities in individuals with disabilities, their ability to inclusive programs. The practices of this along with other approaches that support "whole brain" or "brain compatible" learning. make decisions about their own lives has validated approach will describe an ongoing The facilitators will discuss applications at all frequently been taken away. This workshop professional development model relying on grade levels. will focus on a number of preferable excellent practicing teachers who consult alternatives to support all people at risk with teacher teams around the state. T-8 Developing Augmentative Communi- cation Systems to Support Participation including individuals with the most T-3 Tools for Working: SSI Work decision-making support needs.Discussion Incentives & Transition Age Youth in General Education Classrooms Rae Sonnenmeier, Michael McSheehan will include best practices in alternatives to Sheila Fesko, John Butterworth, Vicki Brooke, Ellie Developing an augmentative communication legal guardianship, some recent court Emanuel, Helena Hoas, William Halloran system within an inclusive educational setting decisions, and philosophical debate sur- Representatives from the Work Incentives requires a thoughtful process to ensure that a rounding self-determination and choice- Transition Network will provide participants stabilized communication system is not a making for people who are at risk of losing with content material on the SSI program, prerequisite to being included. The phases of their right to make their own decisions. the impact of working on SSI benefits, developing such a system, including consider- T-13 IDEA: What Parents and creative use of the work incentives to ing the features of technology, and selecting Advocates Need to Know advance career goals and self-determination, vocabulary to increase curricular and social Dixie Jordan and the role of schools in addressing SSI participation in general classrooms will be Join the Co-Director of the FAPE Program at needs. the PACER Center to discuss IDEA following T-4 Creating and Maintaining Inclusive presented. This session will include discussion, interactive problem solving, exploration its 1997 reauthorization and newly released Learning Communities: Community, regulations. The workshop is organized Curriculum and Teacher Inquiry of technology, and personal stories. T-9 Including Students with Disabilities around the six principles of IDEA '97: a free Mary Fisher, Mara Sapon-Shevin, Lucille Zeph and appropriate public education; appropri- This interactive workshop will address the as Fully Participating Members of the High School Community ate evaluation; Individualized Education three essential components of inclusive Program (IEP) development; least restrictive learning communities: 1) community- Carol Tashie, Mary Schuh, Jeff Strully Why students with disabilities should spend environment; parent and student rights in building, 2) effective current and emerging their high school career with all peers and decision-making; and due process proce- practices in general education curriculum strategies for overcoming obstacles that cause dures. and instruction, and 3) reflective practice students to spend time away from typical Look for additional TASH Techs in the and teacher inquiry. The presenters will help peers will be discussed. What students Conference Brochure and future to bridge the gap between research (or the should be learning in classes, after-school, ideal) and practice. issues of the TASH Newsletter! weekends, and the transition to jobs will be fA% discussed. BEST COPY AVAILABLE PAGE 7 ° 1111SMNewsletter, May/June 1999 TRANSITION PLANNING

Students Talk About Their Roles in Transition Planning BY COLLEEN THOMA and MICHAEL WEHMEYER

OOOOO OOOOO of the student. Whatever their direct or appropriate," the regulations regarding "I just want to say that indirect knowledge about the student, student involvement in transition having a disability isn't this group is charged with supporting theplanning are quite clear and unambigu- easy, especially at the age student in working toward developing ous. The regulations state that if one of of eighteen. It's basically and attaining a vision for an adult life. the purposes of the meeting is to con- hard because you want to How can this be accomplished? This sider transition services, then schools become something in life article will share the suggestions and must invite the student [Sec. and sometimes people recommendations made by students who 300.344(c)l. The regulations rightly won't let you. The people were part of this process. point out that "for all students who are that you love the most will 16 years or older, one of the purposes of want to help you and you Overview the annual meeting will always be the think your life is coming to planning of transition services, since an end because you don't Although federal law regulating the transition services are a required compo- want to hurt yourself, and education of students with disabilities nent of the IEP for these students" (Sec. 4, you don't want tohurt your has always indicated that students 300.344, Note 2). In other words, parents. I think this is the should be members of the educational schools must invite all students aged 16 hardest thing about being a planning team "whenever appropriate," and over to planning meetings and teenager, being trapped." the unfortunate reality is that for far too decisions made about students' transition Kathy, age 18 many students, others interpreted services must be based on students' "whenever appropriate" as never. Such preferences and interests. meetings were, by and large, times when Kathy expresses the fears felt by adults would come together to discuss The 1997 amendments added the further many students with disabilities student deficits and remediation strate- requirement that schools assist students as they prepare to leave high gies and to make decisions for the to understand their rights and responsi- school. They fear that the visions they student. In the last decade there have bilities and be informed of the imminent have for their adult lives are not only been significant changes in the IDEA transfer of different from the expectations of their that have compelled educators and those parents, but that pursuing these visions parents to rethink the role of students in rights, will cause pain for those about whom the educational planning process. In including they care deeply. Students with disabili- addition to requiring that transition the right to ties have many adults who work with services be provided for students aged 16 give them to help make plans for this and older, the 1990 amendments to the informed important transition, including their IDEA also mandated student-involve- consent, parents, teachers, school administrators, ment in transition planning by stating not less than one year prior to their 18th provider agency staff, and others. Some that needed transition services must be birthday. Given the student involvement of these people, like parents and based on student preferences and language in IDEA, the impetus provided teachers, have long-standing relation- interests. While the IDEA leaves the by the self-determination model demon- ships with students. Others come to the statutory language regarding student stration projects funded by OSEP in the table with little or no direct knowledge involvement in educational planning meetings at the rather ambivalent "when Continued on page 9 PAGE8110 TASK Newsletter, May/June 1999 TRANSITION PLANNING

Students Talk About Their Roles in throughout the school year, to prepare opportunities, including career Transition Planning for these planning meetings. Teachers, exploration, to help them make Continued from page 8 parents, and other advocates need to informed decisions and goals for prepare students for their participa-their futures. tion.

1990s, and the 'age of majority' language in IDEA '97, the legislative and policy impetus to involve students in their own "Before meetings, my "I wantt tttry new things.thi transition planning is considerable. As mother and me, we talked So before I get out of illustrated by the comments of Kathy at about what I wanted to do school then I can make up the beginning of this article, however, with my life, where I want my mind on what I want to putting such policy mandates into to live, what I want to do do." Elaine, age 19 practice is complicated. for work. Then we practiced what I was going to What can teachers do to assure that tell people at the meeting." Duane, age 20 Kathy pointed to the need to provide students are not only present at their experiences and opportunities that own meetings, but that they are actively reflect the student's preferences and involved in making choices for them- interests, too. This strategy encourages selves? The simplest answer is to ask Another strategy that supports student teachers to provide a multitude of the student for input. involvement in their transition planning opportunities to make informed meetings is to change the format of choices, focusing foremost on those the meetings so students have more opportunities that are of interest to "I would first of all ask, opportunities to participate. Many the student. Not only do students need 'What subjects would you articles that address best practice to learn to make their own choices and like?' Not what other procedures in transition planning decisions, they have to learn to express people want, but YOU include suggestions for utilizing person- them, and deal with the reactions of decide what you want. I centered meeting formats. One teacher others. For many teenagers, this can be , want to make my own points to the need for a change in choices, and it seems like format that would allow students to , now that most of my family have a greater voice in planning for "We, as a team, with the is making choices for me, their own futures: job coaches and my sister i n how much I should eat and my parents, have been and when should I gradu- Students are present for the meetings, but helping me gain experi- ate, what jobs they want that's about it. Right now, we're stuck in a ence, they have been me to have. I want to format where the individual transition helping me with adult choose all of these for plan is almost a checklist. The transition decisions. I feel kind of - myself. Not what my plans miss the boat of truly reflecting a pressured by mom because friends or my family want student's interests. But the format is quick she wants me to have me to do. I know they're and convenient. Ideally, I would like to certain jobs that she thinks : trying to helpme. I really walk into the meeting with a blank sheet I might like. And I tried love them dearly and I of paper and say to the student, "What do those different jobs and know they're trying to help you want to be when you grow up?" And they don't suit me. ...my me, but they also have to then, whatever the answer is, say, okay, ; heart says that my dream understand how I feel. " now what do we need to do to get there? job is in entertainment." Kathy, age 18 What do we need to do in school, in the Kathy, age 18 community, on the job?

Just asking students for their opinions Elaine, another high school student, difficult.It can be even more difficult for during transition planning meetings is discussed the fact that opportunities to students with disabilities who often are not enough preparation for most stu- try new things can help her make better more dependent on their parents than dents to think about and report their decisions for the future. This is another teenagers without disabilities. Teachers preferences. There are strategies that can strategy that can support student self- be employed prior to such meetings, and determination in transition planning: expose students to many different Continued on page 10 .PAG" 111 TASK Newsletter, May /June 1999 TRANSITION PLANNING

Students Talk About Their Roles in functional way. Rachel's mother talks Kathy's mother spoke of this, saying: Transition Planning about her fears of being responsible for Continued from page 9 communicating Rachel's preferences and "What it really took was someone who interests in transition planning meetings: finally said 'Why not?' when the discussion about Kathy earning her high school "It would be nice if Rachel could verbalize diploma came up once again at a case exactly what she wants. It wouldn't be such conference. This set the wheels in motion need to find ways to help students a burden, not burden, but challenge. It is a and Kathy got onto the "diploma track" deal with the emotional aspects of heavy load because you've got another after that. The job coach who started making their own choices and individual here that has every right to be in working with Kathy toward the end of this choosing a greater degree of inde- a situation that makes her happy,. but again year also said, 'Why not?' when we asked pendence. Kathy talked about this in all you have to go on is Rachel's personal- her about the possibility of finding a great detail in the quote in the beginning ity, knowing what makes her happy and classroom assistant position for Kathy in of the article. Another student also what doesn't make her happy. Knowing an elementary school." addresses this issue: what situations bring her confusion and what situations she just walks right into The importance of developing a transi- and is her social self. So you really do get a tion planning process that both supports "They say that I will live in pretty good idea of what's going to be and encourages students to take respon- a group home after I workable and what's not. At the same time, sibility for their own lives, to make goals graduate, but I don't want being a parent, I'm sure I'm overprotective." and monitor their progress toward their to.I want to stay at home goals and to express their preferences with my mother until I get Curtis is another student who receives and visions to others is essential.It may my own place. But what special education in high school. He be the only way that schools can impact do I do? They say that if it planned to attend college after high poor outcomes for students with disabili- doesn't work at the group school, but had difficulty in finding ties after they graduate from high school. home, I could come back transition team members who could helpWe are naive if we believe that we can home. I wonder what they make his plans a reality. An important continue to develop plans that "have mean by doesn't work out? strategy for preparing students to be self- students' best interests at heart" if we fail Why won't they listen to advocates is to teach them about the to involve them, and/or ignore their me?James,me ?" age 18 laws that govern supports and opinions throughout the process. services to which they may be Students will find ways to assure that entitled. their preferences are heard and respected after high school, if not before. Duane, a Not all students are able to clearly senior high school student, had this to say articulate their thoughts through verbal "You have to be knowledge- when discussing his upcoming gradua- communication. Most special educators tion: have students in their classrooms who able and you have to be have limited or no speech and for whom pushy. You have to know augmentative and/or alternative forms of your rights and if it's within communication have not been success- reason, you just have to fully obtained. Teachers and parents push for all of the things to "I can't wait until I gradu- often feel that determining the prefer- be in place. Because the ate because then l can quit ences and interests of these individuals is professionals do not all this job and find me one know what they are talking very difficult, if not impossible. Rachel that I want, without all of . is a high school student who communi- about. Curtis, age 18 their 'meddling." Duane, a cates in one-word utterances and/or high school senior gestures. Her mother has been responsible for sharing her interpretations of If the student is unable to make his or her Rachel's preferences and interests for voice heard, or if the transition planning most of Rachel's life. One strategy for team is not sure that such preferences are Colleen Thoma is an Assistant Professor at the University of Nevada Las Vegas. Michael supporting student self-determination is "realistic," it is important to find some- to more fully investigate alternative Wehmeyer is Assistant Director, Department of one who is "visionary." Research & Program Services, ARC National means of communication and to Headquarters. incorporate these into the transitionFind the "why not" person who can IEP process. This will help the student help find ways to make the student's learn alternative means of communicat- dreams and visions a reality. ing preferences and interests in a PAGE 10112TAM. Newsletter, May/June 1999 COMMUNITY-BASED EMPLOYMENT: A SELF-ADVOCATE'S PERSPECTIVE

ost self-advocates are con- the reason is because people see indi- cerned that not many people viduals with disabilities as children. Mwith disabilities have good Why Workshops Many people with disabilities still work jobs, but unfortunately this has not yet in workshops. been seen as one of the priorities for Should Be some national and state self-advocacy Closed All people can have a "real" job, regard- groups.I think the reason is that people and Why People less of their disabilities. However, some with disabilities don't believe they could people (including my own parents) don't or should have a "real" job. People are Should Work believe this is the case. People with not encouraged to have jobs. Unfortu- in the disabilities should be able to select jobs nately, staff, parents, and professionals for themselves on the basis of their usually have low expectations about Community abilities and interests. For example, if what people can do. someone is not interested in working BY LIZ OBERMAYER outside with flowers, then working as a Gunnar Dybwad, a well-known leader in gardener or mowing lawns might not be the disability rights field, said that this is a good job for this person. People just the "most serious problem" in his eyes. need the right kind of support to do He said that getting a "real" job will help their jobs.If at all possible, the support with liberation beyond people's disabil- should come from the job rather than a ity.I agree with Gunnar because I think job coach or somewhere else. The reason jobs help people achieve the dignity they is because it is more natural for co- deserve. When people get a "real" job, an eight-hour day. When people leave at workers to support each other than for they can contribute to society and then 3:00, it looks like they are in school an outsider to support the worker. we feel like we belong in the community. rather than at a job. I think this is the case because staff don't think people People with disabilities want to be Why is it okay for a person with a with disabilities can work an eight-hour treated as much like people without disability to not work if they choose, and day, or staff don't have the same kind of labels as possible. For example, when I it is unacceptable for a person without a expectations for people with disabilities was working at the library, the majority disability to not work? If you don't as they have for themselves. Sometimes of my support came from my co- work, society looks down on you. I staff without disabilities want to leave at workers. Now that I am at the Depart- think society doesn't treat people with 3:00 too, so people with disabilities have ment of Mental Retardation, I insist on disabilities as a "whole" person. to leave at that time regardless of my support coming from the people I whether they want to continue to work. work with. This hasn't been so easy for Have you ever thought it was strange to my co-workers. It's funny that at first see people with disabilities leaving their When I was in an office skills program, the support wasn't given so easily. The jobs at 3:00 in the afternoon? Most we came to work around 9:00 A.M. like reason it's funny is because supporting people without disabilities need to work everyone else, but we left at 3:00. At first people with disabilities is what the I thought this was strange and I ques- Department does. tioned them about this.I was told that 'People: with disabilitres shOuldJ2e 3:00 was the time that similar programs Another reason why people should be ableito select jobs forlhemselveson dismissed for the day. able to have "real" jobs is because having the baSis of their abilitiei-and inter- "real" jobs can give people something ests.. People just need.the right kind In my job as a self-advocacy specialist at worthwhile to do. It also can show to the of support to dothei(jObs: If at all the Department of Mental Retardation in world that people are people first, before Oossible, the support shobld come Massachusetts I asked my supervisor their disabilities. We need to remember frbm the job rather than a job''coach what would happen if I left every day at that people with disabilities have all or somewhere else. The reason is 3:00.I was told that I wouldn't be paid kinds of different talents and interests. because it is more natural bi- co- my full salary. The only other group of workers to suOixirt each other than people that start their day at 9:00 and Another question is why do we have to for an outsider to support the end at 3:00 are school children. be in separate places or in separate jobs worker. from people that don't have the label of a Why should adults that have disabilities have a schedule that kids follow? I think Continued on page 12

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Why Workshops Should be people with disabilities are seen to be in that I worked at the library, my first Closed and Why People Should a different category than everyone else, "real" job, I questioned myself about Work in the Community because in this society people are whether I could really work there. Continued from page 11 expected to work when they are finished Would I be successful? Would my co- with school. workers be happy with my work? Would they take me seriously in my job? People with disabilities shouldn't be Would they like me? I didn't have the made to feel like they are different than confidence in myself that I needed. disability? Do people think they can anyone else. A fun part of working at a catch our disability from being around job is that you get to meet a lot of Everyone should be able to find a job us? Having people work in a workshop different people. I remember when I was that matches his/her skills and speed. is another way of segregating people in a working at a library, we used to have People need to know they are going to "them" or "us" category. parties and I went out with friends for get the kind of support they need to lunch once in a while. In my current solve a problem, to develop their skills, When I job, we also have parties and I go out and to show that they have other was for lunch with my friends. I also enjoy qualities that are important to their working in talking to my office mate, Karen. employer. For example, when I worked an enclave at the library I could not put away the in New However, making friends and going out books as fast as other people did, but I Jersey, we for social events isn't a job responsibility had the ability to accurately put the had a when you are hired. It is true that books away in the correct place. That "special" getting the job done needs to come first, was more important to my bosses than table but for some people socializing with co- whether I could put the books away as where people with disabilities sat to do workers is a very important part of a job. fast someone else. They got to know me work. There was also someone It makes working more pleasant. as a person who was capable of doing that was hired by the agency to help us. the job, rather than focusing on what I This made me feel like people didn't The last point I want to make about why couldn't do. trust me to do my work unsupervised people with disabilities should not work and that I couldn't ask other co-workers in workshops -- and this is probably the Sometimes people feel that it is "safer" to to assist me. It didn't feel like a "real" most important reason --is because work on the "inside," in a workshop, at job to me. people with disabilities have the right to the agency's front office, or in a work work!I believe that to get a job people skills program. This may be because One of the biggest reasons people don't with disabilities need to believe this. when you work in the agency or in a like to work in a workshop is that they work skills program, it is harder for you don't earn a proper amount of pay. Most What will it take to close workshops? to get fired. The service provider might of the time people with disabilities don't be willing to give the person more even earn minimum wage. If an em- than a couple of chances to improve. ployer didn't pay people without disabili- However, when have you a "real" job, ties the minimum wage, they would get people with disabilities may be worried into a lot of trouble for violating the law. that the employer will not be as patient "Everyone should be able to find a with you and not accept that people just Why can they get away with it when they job that matches their skills and are dealing with people with disabilities? speed. People need to know they might need extra time to learn the job. Is the answer that people think they can are going to get the kind of support take advantage of people with disabili- they need to solve a problem, to Soon after I started at the library my ties? Working "outside" of a workshop develop their skills, and show that father met with the director.I felt like will also show the world that people they have other qualities that are she thought my father expected her to with disabilities can earn a regular important to their employer." show "partiality" toward me. That really paycheck, pay taxes and make a "contri- embarrassed me because it looked like I bution" to society. couldn't handle my own job. How many of your parents have gone to meet your Most of my friends don't like to work in boss to talk about your job? Sometimes an environment that tells society that it's First, I find that taking any kind of job is parents might feel safer and more secure okay to treat them like children. Instead,a risk. People with disabilities some- to have their son or daughter employed they choose to sit home and watch times don't believe that they can work in television. This is another way that a "real" job. I remember the first day Continued on page 13 114 4 PAGE 12 TASK Newsletter, May/June 1999 COMMUNITY -BASED EMPLOYMENT: A SELF-ADVOCATE'S PERSPECTIVE

Why Workshops Should be If I was assertive and said that I didn't Closed and Why People Should like any of the work options, my instruc- Work in the Community tors could tell me that there was no job PROFESSIONAL Continued from page 12 out there for me. This happens all the time. One of my friends stayed in the DEVELOPMENT workshop longer then he wanted because he didn't think there were any FACILITATOR other choices available to him. in a workshop rather than in the community. Parents worry about the same People have to prove themselves to staff Collaborate with fellow colleagues, things we get worried about.However, before they are willing to help you find a develop collaborative relationships with now that I have shown my parents that I job in the community. Why should I school-based personnel, and facilitate can handle any problems or difficulties have to prove myself, and people without best practices in education for ALL that come up in my job on my own, they disabilities don't? Is this really fair? Is students. The position involves have stepped back and don't interfere, inservice training, working with school- this treating people with disabilities and but still offer me as much support as I based teams, and developing strategies people without disabilities as equals? want. for systemic reform at the school-based level. One of the other experiences I had in sheltered work environments was that I A Master's degree in special education, always worked with people with disabili- general education, or a related field; a "If you are sf if not ties.I never had opportunities to learn minimum of three years experience convinced that work= from people who didn't have disabilities, teaching students in public schools; shops and sheltered nor could they learn from me. When I experience in including students with prograMi should . was in that environment I always felt like disabilities in regular education classes; closed, I challenge:you.. experience in conducting formal to spend I was being "baby-sat." I felt like I didn't theM..Iwouldalso need that, and I was totally embarrassed inservice training sessions and curricu- encourngeYouto think by this treatment.I also feel like you lum accommodations; and experience abOut.the.OMOLint.Of waste your time at a workshop. Many providing training to general and/or money people.oarn and times you are not doing anything more special education teachers is required. decide if YouCOuldliVe:, than sitting around. Waiver of any of these requirements on that. wage? will be considered on the basis of If my words still haven't convinced you strength in skill areas. that workshops and sheltered programs We need to help parents and family It is critical that Professional Develop- should be closed, I challenge you to members feel comfortable knowing we ment Facilitators be knowledgeable of spend some time in them. I also would can handle things for ourselves. They best general and special education encourage you to think about the need to learn to let us take a chance practices and be able to demonstrate rather than step in and help solve the amount of money people get paid and these practices to others. This requires decide whether you could live on the issue every time. We need to tell our oral and written communication skills, pay. If we all work together to close the parents and other people that we need a developing and conducting adult workshops and sheltered programs, chance to solve our problems ourselves- education sessions and courses, maybe people with disabilities can work they don't need to do it for us! They can, planning and organizational skills, and in an environment that they enjoy, earn a the ability to empower others to use however, "stand" by us for support. decent wage, and learn from the experi- inclusion tools. MCIE is an equal ence, too. In the self-advocacy move- opportunity employer. We encourage Workshops only provide a few options, ment we like to say, Together Everyone minority applicants to consider us. so this keeps people from learning and Achieves More. Let's do it together! Application deadline is August 1, 1999. trying out different kinds of jobs and skills. In the program I was in, with the Mail or fax resume and cover letter to: choices I was offered I couldn't imagine getting a job at all. The choices that I Liz Obermayer is a Self-advocacy Carol Quirk, Director was given were things that I didn't want Specialist with the Massachusetts Maryland Coalition for Inclusive to do. Some of the options were to work Department of Mental Retardation, and Education, 7257 Parkway Drive, in a greenhouse, on a farm, or in an Secretary of the TASH Executive Board. Suite 209, Hanover, MD 21076 office. Well, the office was somewhat E-mail: [email protected] interesting to me, but it wasn't really Fax: 410-712-0211 what I wanted to do. OrA BEST COPYAVAILABLE 1 1 5 'TAM/ PAGE 13 Newsletter, May/June 1999 MAY/JUNE 1999

Child Development and Disabilities Para Educators: Coordinator Life Lines Fulton County Center for Families, Inc. is seeking a motivated individual for the following position: Child Development and Disabilities Coordinator. in the Classroom

Includes assisting with case management, organizing staff trainings and parent meetings. Candidate will advocate for 1999 Trainer-of-Trainer families with children with special needs and assist them in recognizing needs and obtaining appropriate services. Indi- Sessions vidual will support childcare providers in assuring quality/DAP Build in-district resources programming through training with working knowledge or possesssion of CDA. to ensure on-going paraeducator training by attending this 3-day Candidate will possess a four-year degree in education; child development, early intervention education and three years workshop to become a combined experience in management and working with young children. Valid driver's license, vehicle available for work, ©LifeLines trainer. current physical, Child Abuse and Criminal Record clearances required for the position. Candidate must have strong organiza- Offered by LIZCONISULTINIG: tional, communication and supervisory skills as well as the ability to maintain day-to-day staff/center supervision and Orlando, Florida record keeping.

Send cover letter and resume to FCCF, P.O. Box 461, Colorado Springs, Colorado McConnellsburg, PA 17233 or fax to (717) 485-0903. EOE Sacramento, California Baltimore, Maryland Portland, Oregon The University of St. Louis, Missouri Washington Graduate Syracuse, New York Program trains teachers to serve the needs Skokie (Chicago), Illinois of pupils with significant disabilities. Charleston, South Carolina Emphasis on data-based, systematic instruction referenced to the requirements See our website for of natural school and community settings. M.Ed. degree plus initial teacher more details: certification possible. wwvarsonsulting.com Contact Dr. Felix Billingsley Area of Special Education LIZCONSULnIVG 102 Miller Hall, Box 353600 University of Washington P.O. Box 6049-747 Seattle, WA 98195 Katy, Texas 77491-6049 (206) 543-1827 e-mail: [email protected] Telephone (281) 395-4978 Fax (281) 392-8379 PAGE 1 f16 TASK Newsletter, May/June 1999 WORKFORCE INVESTMENT ACT AND CHOICE

THE PROMISE AND PITFALLS OF THE WORKFORCEthivEsimEprr Act

BY MICHAEL CALLAHAN

Over the past fifteen years many ofcenters in Service Delivery Areas (SDAs) Looked at through the values lens of an us on the employment side of representing geographic areas compris- organization such as TASH, these TASH have been suggesting that ing 200,000 - 500,000 persons. One- principles seem more in keeping with natural and generic approaches representStop Career Centers are supposed to our perspectives regarding the needs of preferred avenues for persons with provide a single point of access to persons with significant disabilities than significant disabilities to achieve mean- services leading to jobs and careers for most traditional, generic legislation. ingful jobs in the community. Appar- all unemployed citizens. And even though the basic thrust of the ently Congress was listening. legislation undoubtedly was not directed WIA is driven by a set of principles that towards welcoming the people who In the summer of 1998 Congress passed, govern both the broader act and the one- TASH represents, the welcome mat is and President Clinton signed, the stop system specifically. The overall out. The challenge we face is whether to Workforce Investment Act (WIA, PL direction set by WIA embraces the accept the implied invitation, to enter 105-220). This sweeping labor law took following principles: into these historically inadequate its direction from the so-called "Republi- generic systems, or to focus on the can Revolution" in 1994 and consoli- disability-specific services that have dated a number of federal employment gotten us to this point. The decision is programs, including Vocational Rehabili- not an easy one. Principles of the NVIA: tation, into a single, comprehensive initiative designed to offer a single point II-Providing universal access to all One-Stop Career Centers will be a part of entry for all citizens who want to Who want tO WOric; of a revamped state employment system become employed. Four cabinet-level Eapowering iichViduals'whO that replaces the Job Training Partner- departments are required to participate use WIA's services; ship Act (JTPA) and blends each state's in WIA, including the departments of Streamlining services; job service agency (from the Wagner- Labor (DOL), Education (DOE), Health providing state.and local.. Peyser Act), with Adult Education, and Human Services (HHS, under the flexibility; Vocational Rehabilitation and a laundry Community Services Block Grant) and Increasing accountability, to the list of over fifteen other agencies that Housing and Urban Development user, taxpayer provide employment supports ranging (HUD).Additionally, HHS, under Strengthining'the'role for local from Job Corps participants to veterans Temporary Assistance for Needy Fami- :boards and 'Private sector,,:aiid; to Native Americans. WIA allows for lies (TANF), the Departments of Agricul- Improving youth significant, indeed unprecedented, ture and Transportation, as well as flexibility at the state and local level. Americorps, are encouraged to partici- , The act requires the development of a pate in the implementation of this act. in the -Oiqaact, statewide workforce board and a cadre charges Stop Careir Centers of local workforce boards, one for each How does all this relate to the employ- 'with four elegantly'simple direttives. Service Delivery Area that contains a ment needs of persons with significant One-Stop Career Center. The Governor disabilities? At this point it's fair to say Universality of access an of each state has extensive powers in that the answer is unclear. However, the setting the particular course that each best route for successful inclusion into H. Customer Choice state will take, as well as appointing WIA is likely to be through the series of Integration.of services members to the statewide board. There One-Stop Career Centers that are offered (blinding, are relatively few sweeping federal mandated by this legislation. This combining resources) and, mandates within WIA. Rather the law component of the act requires states to Accountability for results by develop comprehensive employment providerS

Continued on page 16

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THE PROMISE AND PITFALLS OF WIA as an alternative to the One-Stop system Training Accounts (ITAs) in the new act Continued from page 15 offering services when centers are to pay for employment programs and unable to meet the needs of certain services. Rather than having the Private applicants with disabilities as opposedIndustry Council (PIC) under the JTPA to providing the additional capacity contract with employment training necessary to make the generic system programs and slot applicants to those provides a general direction and national work seamlessly for all persons with pre-selected providers, WIA One-Stops intent, leaving the specifics to the states. disabilities. offer the opportunity for applicants to take their ITA vouchers to providers of Each SDA will be managed by a Local State DD agencies are even further from their choice for services. Workforce Board whose membership is the table. Since DD is not a required selected by a local elected official (LEO). partner of the one-stop system, most The Promise is Inclusion In the case of multiple LEO'S, a compro- state agencies have virtually ignored the mise working agreement must be development phase of WIA. It can only Imagine a young person with a signifi- submitted to the Statewide Workforce be assumed that unless there is a notice- cant disability graduating from a school Board. Participation by entities repre- able turn-around, DD state agencies will anywhere in our country and being able senting persons with disabilities is be left out of local and state workforce to go to the local One-Stop Career required for both local and state boards, boards. Center to become successfully employed. but selection is not guaranteed. Private Imagine a person who has the chance to sector employers must comprise at least One-Stops are charged with providing leave a state institution receiving access "one plus fifty percent" of each each applicant access to a set of "core to personalized employment planning workforce board. These boards will services." Those services include: and job development representation largely determine the degree to which from a One-Stop Center. Imagine an one-stop centers will seek to recruit, a. Eligibility determination for adults, adult with significant multiple disabili- welcome and effectively serve persons youth and dislocated workers; ties, along with his or her family, going with significant disabilities. to a One-Stop Center to receive assis- b. Outreach, intake and orientation to tance in developing a personal budget to The Reality one-stop services; pay for the employment services that will allow them to leave a workshop or day It takes energy and resources to be c. Skills assessment (which can include center. These images alone represent a present at the table as the decisions non-assessment based discovery); sufficient reason to fight for inclusion regarding the shape of local One-Stop into generic employment services just as Centers are made. At this point, two of d. Job search assistance and career TASH has fought for inclusion in regular the most widely-utilized sources of counseling; schools across the U.S. funding for employment for the persons that TASH represents, vocational reha- e. Information on provider's perfor- bilitation (VR) and developmental mance and program costs; disabilities (DD) state agencies, are fru Ile cautiously considering their roles. f. Disclosure of the local workforce Vocational rehabilitation is a required area's performance measures; partner of the one-stop system. How- In fact, inclusion is the central theme of ever, at this point, VR agencies in many g. Information on supportive services the promise of WIA. Congress, whether states have chosen to present themselves such as child care and transportation; it intended to or not, has provided us with the legislative structure to move h. Assistance in filing unemployment aggressively from a disability-focused compensation claims; employment system to a generic, natural approach. But the mandates are few In fad, inclusion is the central theme of the promise of WIA. i. Establishing eligibility for Welfare The promise of this new law can easily Congress, whether it intended to to -Work services; and, pass us by as the local deals and struc- or not, has provided us with the tures are set. States have until April 1, legislative structure to move Follow up services after employ- 2000, to present plans for implementa- aggressively from a disability- ment. tion of their One-Stop systems and all focused employment system to a states must have a fully operational generic, natural approach. An important difference between WIA network of One-Stops in place by July 1, and the Job Training Partnership Act involves the use of Individualized Continued on page 17 PAGE 16 1 1 TASH Newsletter, May/June 1999 WORKFORCE INVESTMENT ACT AND CHOICE

THE PROMISE AND PITFALLS OF WIA successfully used the generic job service usual and that there is no need for Continued from page 16 office to become employed. It will providers to seek funding or relation- require both in-depth consideration and ships within a One-Stop Center. aggressive action by VR and DD agencies, as well as by advocacy organizations A further pitfall of WIA involves the such as TASH, to shift this reality reality of devolution of power. This is 2000. This means that TASH members towards inclusion. perhaps the first example in the disabil- and others interested in the full inclusion ity field of Congress' intent to transfer of persons with disabilities within this An easily overlooked promise of WIA, power and decision-making to the state system have less than a year to get to the especially for those of us who are and local level. Gains and examples of table and to assure that access is offered. focused within the disability arena, is the successes in one state, or even one Some states may already have One-Stop wealth of resources that might exist region within a state, might vary signifi- Centers as a result of a pilot demonstra- within the current and future One-Stop cantly with others nearby. Since the tion initiated by DOL in the mid '90's. Centers. Small business incubation structure and services of each One-Stop These sites may be grandfathered into centers, employee support groups, will be locally determined we will not be the new system required by WIA, but carpool and transportation co-ops and able to easily cite exemplary services in a they still must meet the general intent other similar services are available in promising area as an overall model or and direction of the legislation. many areas.It is our responsibility to strategy. Success will require local effort assist these resources to become respon- within one region, one state at a time. sive to the needs of non-traditional applicants. Another concern of WIA is the question School inclUsion raises' of whether effective and individualized the same concerns that are voiced in employment such'as hovy!.to The Pitfalls ofWIA services can be offered within a generic balance the:need 'foe speCialized structure such as a One-Stop. The servicesr:wittythedeSire to achieve First, there is no guarantee that the kind Department of Labor has always been access to riatinli generic environ-, of directed effort indicated above will focused on macro-economic issues and mentsandServitei.. While, successfully open the generic employ- national statistics. The needs and concerns such:as.theie are Valid; ment system to persons with significant concerns of individuals have a low thek.have not stifledTASkS- disabilities. Since we have only so much priority at best. We know that the best advocacy to offer the tienefitS.:of. energy and resources, there is a valid outcomes for the persons we represent full inclusion to.al(Sti.identS,_:Tfie caution that could be raised concerning same values mist be: embraced are achieved through an individualized, regarding access to erhOloyment. the degree of effort we can expend in person-directed approach; however, it is such a risky venture. And beyond our unclear whether One-Stops will be own energy, what might the fallout be willing to work with one person at a from our funders who are cautiously time. avoiding full participation in the devel- Even though it is accurate to say that the opment of WIA? Many state vocational Finally, there is the pitfall of WIA just underlying values of WIA are based morerehabilitation agencies are deeply becoming another hollow promise to on streamlining, minimizing and concerned that the end result of WIA is persons with significant disabilities and economizing government services than that they will be so assimilated into the their families. One could easily imagine on meeting the needs of all persons in generic system that VR will cease to a family effort to access services within a the community, the stated values within exist. This concern for survival can One-Stop Center resulting in even the legislation provide us with a suffi- easily result in battle lines being drawn deeper fatigue and disappointment. The cient framework to shape this emerging between state or local VR offices and current generic system simply does not system in a way that can become a single those who advocate for an inclusive intend or even attempt to effectively point of access to employment services system. serve the persons that TASH represents. for all. However, just as special educa- Why should we think that the new tion services in schools have had to re- Developmental Disabilities agencies system will be any better? think and re-form themselves to adjust within states can also cloud the issue. to the demands of inclusion, so also will Since most have remained well away Reflections on WIA the current disability-focused employ- from the initial implementation efforts, ment structures of vocational rehabilita- the clear message to providers of em- When TASH began to solidify its direction and developmental disability ployment services for persons with tion regarding school inclusion, it would agencies.It would probably be accurate significant disabilities is that WIA does be fair to say that regular schoolshada to state that less than one percent of all not concern them. This message implies similar track record of serving persons persons that TASH represents have that we will continue to do business as Continued on page 18

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THE PROMISE AND PITFALLS OF WIA demonstration grant to examine the off from one entity to the next for funding Continued from page 17 feasibility of welcoming persons with and outcomes. significant physical disabilities to existing One-Stop Centers in Detroit and Encourage provider agencies to contact Denver. This project, now nearing the their local workforce boards and offer to end of its first year of implementation, is provide "soft-skill, on-the-job-training with significant disabilities as the generic currently serving 38 individuals within and customized" training services for employment system does today.How- the two sites. The project features: persons with more significant disabilities. ever, after a decade of a focused initiative These terms are contained in the WIA on full inclusion, services have shifted a) individualizing the core services legislation and represent the likely dramatically across the country for the offered by One-Stops to include a avenues for applicants to avoid becoming better. School inclusion raises many of person-centered discovery and planning slotted in classroom/curricular training the same concerns that are voiced in approach; programs as opposed to individualized employment such as how to balance the employment services. need for specialized services with the b) assistance in developing a personal desire to achieve access to natural, budget; Partner with an interested person with a generic environments and services. significant disability (and family While concerns such as these are valid, c) blended funding from a variety of members, as appropriate) in a one person they have not stifled TASH's advocacy to sources such as One-Stop funds, VR, effort to negotiate an individualized offer the benefits of full inclusion to all DD, PASS plans, Medicaid Waiver and employment outcome from a One-Stop students. The same values must be other resources; and Center. This is probably the most embraced regarding access to employ- effective way to move this system. ment. d) contracting with providers of one's choice to access the employment Engage your state's VR and DD agencies In addition to the compatibility of values services needed to accomplish personal in dialogue to help them consider valued, between inclusion issues in schools and goals. yet distinct, roles with the One-Stop in employment, there is another some- system and to encourage them to what sobering rationale for TASH This experience has led us to offer the participate in a series of demonstrations members to become involved in WIA following recommendations concerning to discover ways to include the persons the possibility of promoting segregated WIA: we represent. services if we do not become involved. The act allows One-Stop Centers to treat Learn about WIA by reading the law, Take the initiative, either personally or "special participant populations that face accessing the DOL web site through your TASH chapter, to offer multiple barriers to employment" (www.doleta.gov) and talking to local information, suggestions and advocacy to differently from other applicants. Of employment officials about local plans. your local workforce board and to the course its easy to see the people TASH One-Stop operator. represents included in this "special Find out who is responsible for imple- population." One-Stops may contract menting WIA within your state and ash with "community based organizations or about participation by persons with other private organizations" to provide a disabilities and provider and advocacy You may contact UCPA's One- "training services program"[PL105-220, agencies on state and local workforce Stop to Success Project Co- Sec. 134, (d), 4,(G), ii, III]. The best boards. Try to become appointed to your directors: Michael Callahan and case scenario for this circumstance board or advocate for someone consistent Norciva Shumpert, at 228 -497- would be that a supported employment with TASH values to become appointed. agency would receive a disability-focused 6999; e-mail, MiCallahan @aol.com, [email protected]; or contract to provide services. The worst Encourage your state's VR and DD visit UCPNs web site at case would be if a workshop or other agencies to participate in state and local www.UCPA.org. segregated entity received the funds for workforce boards in a way that would DOL grant #F-6934-8-00-80-60, extended "pre-employment" training. allow persons with significant disabilities no endorsement of this article by to utilize One-Stop Centers for employ- DOIJETA is implied. Anytime a radical shift, such as using ment in a seamless manner, without being generic employment systems for person bounced back and forth among agencies with significant disabilities, is suggested for funding. It should be possible for all people look for examples of success. In persons with disabilities to access a One- July of 1998, United Cerebral Palsy Stop for services without being handed Associations was awarded a three-year e:s PAGE 181 0TASH Newsletter, May/June 1999 ACCESSIBILITY GUIDELINES FOR RECREATION FACILITIES

Access to Outdoor Recreation: An Update on the Regulatory Negotiation Committee BY CYNTHIA BURKHOUR

The Regulatory Negotiation out a site. Many of these elements are The design guidelines address several Committee on Accessibility in already "universally designed" in ways key concepts, including: Outdoor Developed Areas is the that make them easier to use by all group of negotiators from across the people. Choosing those designs will On small to medium structures with country representing people with create a greater amount of access for all less than 20 elevated play components, disabilities and providers of outdoor visitors. half of the elevated play components recreation opportunities. The Commit- must be accessible and reachable by tee has been charged by the U.S. Access The Committee is now struggling with ramp or transfer system, and on larger Board with the task of developing the the specifics of trail and beach access systems with 20 or more elevated play accessibility design rules for outdoor and is meeting to resolve some philo- components, 25% must be reached by picnic areas including campgrounds, sophical and practical design problems ramp or transfer system. trails, and beaches for implementation that make accessible development a An accessible route is required to, on, under the Americans with Disabilities challenging process. through and off play structures and must Act. connect the accessible play components Accessibility Guidelines for Play throughout the play area. The Committee has reached tentative Facilities Accessible play components must meet specific design parameters which agreement on the technical (what it will Accessible playgrounds open up a whole look like) and scoping (when and how it new world of opportunities to children specify maneuvering space, clear floor or will be done) provisions governing with disabilities. All kids can play ground space, reach ranges, transferable height of play componennts, and picnicing and camping areas. Accessible together, be creative, test their abilities, transfer supports. design of the elements that support and become friends. The Access Board's There is a requirement for accessible these activities will be required. Regulatory Negotiation Committee on surfacing that also meets safety require- Accessibility Guidelines for Play Facili- For example ties issued its final report in July 1997. ments connecting entrance and exit points from play components and play tables, fire Since then, the Access Board has structures. rings, developed the proposed final rule, cooking solicited and analyzed public comment, This is just a sample of the kinds of grills, and is now preparing the final rule to be requirements addressed in the proposed benches, signed into law in the near future. camping pads final rule governing accessible playgrounds. For a copy of the final report, and hook- The Accessibility Guidelines for Play or to receive a more complete update on ups, informa- Facilities establishes the design param- the progress of the Regulatory Negotia- tion signs, eters for all newly constructed and tion Committee's work as it pertains to trash recep- altered play areas covered by the ADA. tacles, etc. outdoor developed areas, please contact will meet The technical provisions describe the the Access Board by calling (202) 272- criteria that specify reach ranges, design requirements for accessible play 5434. heights, transfer supports, clear spaces, equipment and facilities, essentially and maneuvering spaces that make the "what it will look like." The scoping Cindy Burkhour is an inclusive Recreation element accessible to and usable by provisions describe the circumstances Consultant based in Jenison, Michigan and is Coordinator of TASH's Leisure & Recreation individuals with disabilities. The group which dictate compliance, essentially Committee. . has also agreed on how many elements "when and how" the technical provi- (i.e. tables, fire rings and the like) sions must be met. For more information on inclusive recreation should meet the technical design criteria programs or if you'd like to participate on the and where they shall be located through- Leisure 6r Recreation Committee, contact Cindy it [email protected]:,,...... : 12i BEST COPY AVAILABLE. PAGE 19 TASH Newsletter, May/June 1999 MAY/JUNE 1999

Sometimes State Agencies Do the Right Thing BY THE TASH COMMITTEE ON EMPLOYMENT AND TRANSITION

In 1994, persons with disabilities, that underpinned the resources spent for ing state general funds be employed in advocates, employment providers. vocational services.It was determined individualized, paying jobs of their state agency personnel and a few at the summit that there was a signifi- choice by the year 2000. This unprec- politicians met in Austin, Texas for a cant disincentive to persons with edented plan is currently in the latter Summit on Supported Employment. It disabilities who wanted a job of their part of the fourth year of implementa- was a meeting much like countless other choice in the community. A vision tion. The state has reached the 42% such meetings that have been held statement was drafted that urged the mark of that 50% goal. This represents a across the country during this decade to following: "The State of Texas shall assure 5% increase over the target rate set by promote the benefits and successes of that all Texans with disabilities have the service authorities across the state.It working in the community. However, opportunity and supports necessary to work appears that the overall goal will be this was not to be just another state in individualized, competitive employment in achieved. conference. Due to the fact that the state the community and have choices about their comptroller was asked to convene the work and careers." The Employment meeting, and the chair of the board of and Transition the Texas Department of Mental Health Within a year not only had the Board of Committee of and Mental Retardation (TDMHMR) TDMHMR voted to support the resolu- TASH commends wanted to participate along with two tion adopted by the summit, the state's TDMHMR for its additional board members, the results of human service code was amended to commitment to choice and individual- this meeting were far-reaching. reflect these values. The Board Resolu- ized community employment. tion committed Texas to a five-year The outcome of this meeting was a effort that requires that 50% of all challenge to the state to shift the values persons with mental retardation receiv-

Doctoral Assistanceship in Special EductiMi; Specialization in Significant Disabilities, Aspen School at the thiiversity of :Pittsburgh, Department o Instruction and Learmn District Pro m in Special Education A Opportunities' to participate in publie schoolLbaSe ,iresearch and develOpment.:-&i Collegeteac Aspen, Colorado Assistariceship irctiide§ salary and tuition:.

.Magtert degree in 'cirt.,,or related fie Seeking a part-time, high school Inclusion Teacher beginning in the Fall of 1999. Responsibilities include certification rn Special EdUca#Pri.410 4-4.!mn'4, making curricular modifications, providing community- 'three years SUCCeSSfill-Publ.f6 school-teaching ,(prefer based instruction and job skills training, consulting with 'ably at the SeCondarY,leYeareqiiire teachers regarding curricular accommodations, and supervising paraprofessionals. To inquire contact Steyen R. Lyon; P yrofesSor, Special Vniyersity:of For additional information contact Morgen at (970) 925- burgh, 4H01. Forbes Quadrangle, 230 Sou 8057, ext. 573 or Lisa at (970) 925-2972, e,rt. 435. Street; Pittsburgh, PA 15260;,Thone; (412). 7203; Fax:. (412) :648=7081; For an application, contact Ginny Haberman at (970) [email protected]: 925-3460. -00#01:*tt,a BFST COPY AVM ABI F

PAGE20122 TASH Newsletter, May/June 1999 SCHOOL-TO-WORK SYSTEMS Etistaitif Access, Efaity aid Oftalltg far StadefftswithIkcadilities in Sehaal-ta-Work Systems BY EILEEN L. ORDOVER

MIS tools for ensuring quality and equity in the Students with disabilities are in dire high academic standards set by the state for all students. Quality programs integrate school-to-work programs designed for all need of the high quality educational academic and occupational learning, provide students. opportunities that properly designed strong understanding and experience in all school-to-work systems can provide. aspects of an industry, develop higher order Ensuring Access, Equity and Quality also: Twenty-five years after the passage of skills and prepare students for post-second- what is now called IDEA, students ary education. Quality programs also Explores the meaning of "quality" in the with disabilities all too often are empower students to make career and life subjected to low expectations, poor twin themes of quality and equity; choices by giving them the flexibility and education and poor outcomes, includ- ',Introduces three critical, guiding principles transferrable skills they will need to cope ing segregation in low-track courses, that flow from the convergence of the with labor market changes and technological high dropout rates, low rates of School-to-Work Act, Perkins, Section 504, change, and to develop new education and participation in post-secondary the ADA and IDEA; career goals over time. By equity, or education and low employment rates. Examines in detail how IDEA can be used equitable participation, we mean full and Equitable participation in the same as a tool for making real the right to meaningful participation by students with high quality school-to-work programs equitable participation in the high quality disabilities in the high quality programs mandated and created for all students school-to-work programs created for all created for all students. is a significant part of the solution to students; these ills. Provides a guide to the systemic data The book begins with an overview of five key collection, monitoring and evaluation federal laws: The School-to-Work Opportuni- activities necessary to ensure quality and The School-to-Work Opportunities ties Act, the Carl Perkins Vocational and equity for students with disabilities, and for Act of 1994 is intended to prompt Technical Education Act, Section 504 of the all students. the creation of a universal, high- Rehabilitation Act of 1978, the Americans quality, school-to-work transition system that with Disabilities Act ("ADA") and the Throughout, the discussion considers policy enables all students in the United States to Individuals with Disabilities Education Act and practice implications as well as legal successfully enter the workplace and pursue ("IDEA"). Taken together, they form the rights and responsibilities for policymakers, further education. The Act seeks to improve infrastructure for quality for all youth and administrators and those educators and the knowledge and skills of all American equity for youth with disabilities. The employers responsible for implementing youths by emphasizing the critical impor- School-to-Work Opportunities Act and the school-to-work systems. tance of integrating academic and occupa- Perkins Act, which virtually all states are tional learning, integrating school-based and using to underwrite the cost of school-to- work-based learning, and building effective work programs, incorporate standards designed to ensure that students receive high linkages and partnerships between secondary The above represents a brief overview of the and post-secondary education. It is premised quality programs integrating academic and vocational learning. Both Acts also expect new publication, Ensuring Access. Equity on recognition of the importance of using the and Quality for Students with Disabilities in high school years to equip youth with the that all students, including students with disabilities, will have equal and meaningful School-to-Work Systems: A Guide to complex knowledge, skills and abilities they Federal Law and Policies.Written by will need if they are to have meaningful life access to the high quality programs they mandate. Section 504 and the ADA, civil Eileen L Ordover and Leslie T. Annexstein, options for good jobs, further training, and and published by the Center for Law and higher education. rights laws prohibiting discrimination on the basis of disability, independently require Education and the National Transition equity for students with disabilities in the Network, this just-released book can be Ensuring Access, Equity and Quality for purchased by contacting: Center for Law Students with Disabilities in School-to-Work programs and systems the School-to-Work and Perkins Acts create. IDEA, amended in and Education, Publications Office, 1875 Systems is a book about merging quality and Connecticut Avenue, N.W, Washington, equity in school-to-work systems: the 1997 to more explicitly address the right of students with disabilities to education D.C. 20009, (Phone) 202-462-7688, (Fax) development of high quality programs for all 202-462-7687. students, and equity in those programs for programs based upon high expectations and youth with disabilities. By "quality" we attainment of the same high standards set for mean programs that prepare students for their non-disabled peers, provides critical careers, and are designed to meet the same 123 PAGE 21 TASK Newsletter, May/June 1999 MAY/JUNE 1999

National Plan for Training Personnel to Serve Children with Blindness and Low Vision Work is underway to address the need for appropriate educational services for our children and youth with blindness and low vision. A special national project is focusing on the needs we face, moving into the next millenium, to train an adequate number of teachers and Orientation and Mobility Specialists so that all children receive adequate services. This is particularly relevant in rural communities.

The National Plan for Training Personnel to Serve Children with Blindness and Low Vision is a two-year project funded by a U.S. Department of Education Office of Special Education grant to the Council for Exceptional Chil- dren (Division on Visual Impairments). CEC is working in partnership with other organizations and a large group of stakeholders to study the issue and draw up a plan for the nation.

This plan will present strategies to meet the need for appropriately trained professionals in numbers that will both relieve the shortage and move us forward into the next century. The national plan (now available as a draft for review and comment) will highlight strategies to provide a full contingent of services to every school and educational setting serving children who are blind, deaf-blind or have low vision. The national strategic plan will be used to improve our children's literacy and enhance the quality of education received by our young children and school- aged youth.

The plan will be completed and available in the Fall of 1999. To obtain a copy of the draft national plan, contact:

Colleen McNerney, Project Coordinator, National Plan for Training Personnel to Serve Children with Blindness and Low Vision, Council for Exceptional Children, 1920 Association Drive, Reston, VA 20191, (703) 264-9456, E-mail: [email protected]

Inter-American Instituteon Disability (IID) seeks two Volunteer Interns

Excellent opportunity to develop and improve international organizational developmentand networking skills!

110, a non-profit entity founded and managed by people with disabilitiesto empower self-advocates and their families in the Inter-American region and Spanish and Portuguese-speaking countries of Europeand Africa, seeks two volunteer interns with computer experience and excellent writing skills to assist with:

Collecting/organizing data Translating Producing and disseminating newsletter Writing proposals Networking activities Developing a web page Updating the database

Position can be developed by the intern at home. Minimal time in the 114 office in Rockville, MDis required (approximately 4-6 hours per Week). Fluency in Spanish and/or Portuguese preferred.

For additional information, please contact:Rosangela Berman-Bieler, President, HD Headquarters, 711 Brent Road, Rockville, MD 20850, Telephone: (301) 838-3031, Fax: (301) 838-3029, E-mail: [email protected]

PAGE 22 TASK Newsletter, May/June 1999 NATIONAL CONVERSION EFFORTS National Efforts to Promote Conversion: bay Programs toSupported Employment

happier, 83% indicating services were BY PAT ROGAN AND MARY HELD organizations offer only better, 69% reporting better employer relations, and 64% reporting that staff Supported employment has enabled community- based services. were more satisfied. One of the most nearly 150,000 people in the Fewer still important outcomes of these conversion United States to work successfully efforts is that, in the end, few (if any) in the community. Yet, for every person have undertaken total people still preferred sheltered work- in supported employment, there are shops. The converted agencies have approximately four people with disabili- changeover, or conversion, demonstrated that segregated facilities ties in sheltered workshops, and the are not needed for preparing people for number is growing. Thousands more from facility- based to the world of work. Why is our nation people remain congregated and segre- still directing most funding to support gated in non-work day activity (a.k.a. community-based services. However, demonstrations of total conversion are segregated day services? How can more day wasting) programs, despite a growing. In a recent national study of segregated facilities be influenced to growing body of research showing that conversion (Rogan, Held, & Rinne, convert to community-based services? quality of life outcomes are better for 1998), 12 organizations had totally How can we offer integrated work those living and working in integrated converted, overcoming barriers often opportunities to all citizens of our community settings. cited as reasons for maintaining the country? Such questions were the status quo, and 33 more were in the driving force behind two national forums Most organizations providing segregated on changeover to supported employ- day services have chosen to add sup- process of changeover. Positive outcomes were reported, with 91% indicat- ment. The most recent forum is dis- ported employment to their continuum cussed below of services. A smaller number of ing that people with disabilities were National Forum on Changeover to Supported Employment As a result of the February 1999 national forum on conversion, the following national priorities have been established: In an effort to engage national and state leaders, providers, and advocates in Strengthen the involvement of self-advocates in discussions about conversion, a national employment issues. forum was held in Phoenix, Arizona in February 1999. (A similar forum was Develop a National Conversion Network to share held in Denver in 1997). Over 100 information and push for reforms. participants discussed successful strategies for overcoming barriers to conver- Influence policies and funding structures that act as sion. Keynoters included Fred disincentives to conversion. Schroeder, Commissioner of the Reha- bilitation Services Administration, Sue Support organizations undertaking conversion through Swenson, Commissioner of the Adminis- training and technical assistance. tration on Developmental Disabilities, and Liz Obermayer, Self-advocacy Expand state level initiatives that support broad scale Specialist with the Massachusetts change. Department of MR and TASH Board member. Continued on page 24

PAGE231 25TASH Newsletter, May/June 1999 NATIONAL CONVERSION EFFORTS

National Efforts to Promote Conversion * Employment ofpersons with signifi- A 1995 survey found that more Continued from page 23 cant disabilities must be viewed as people with disabilities enteredsegre- careers over time where job changes and gated programs than supportedand non- advancement occur in the interest of supported competitive employment higher pay, greater responsibility and combined. variety, better working conditions and individual interest. Over the last ten years, supported Research .has demonStiated that people: overwhelmingly express:satisfaction with employment has been studied exten- the preferences for their:community job. * The assistance and support provided sively. We know how many people experiences. Organizations:that haVe persons with significant disabilities annually receive services, as well as their ::totolly converted to integrated:services should be individual- characteristics, wages, job types, costs, have fe.iorcl,tfiOt individuals with` ized according to and other outcomes. We know that disabilities have no nee:CU:for facility- needs and abilities, supported employment cost-benefit based. emplOyment services... All. and should maximize studies are positive, and that people services,and supports can be provided natural supports significantly improve their wages, quality sUccessfully in an indiVidualiZed fashion provided by person- of life, and skill development when they in the community at cOMparable costs to segregated services.. nel in the workplace. access real jobs. The Association for Research has demonstrated that people As a result of the forum, several national Persons in Supported overwhelmingly express satisfaction with priorities have been established, includ- Employment (APSE) the preferences for their community job ing: developing a National Conversion has also developed a position statement experiences. Organizations that have Network to share information; expand- as part of that organization's efforts to totally converted to integrated services ing state-level initiatives that support expand integrated employment and have found that individuals with disabili- broad scale change; and strengthening eliminate segregation. The position ties have no need for facility-based the involvement of self-advocates in statement is entitled: Toward Integrated employment services. All services and employment issues. Employment for All: APSE'S Position on supports can be provided successfully in Segregated Services for People with an individualized fashion in the commu- National Organizations Support Disabilities, and was authored by Dale nity at comparable costs to segregated Integrated Employment Options DiLeo and Pat Rogan. The statement services. discusses the crisis that has been reached The Board of TASH has recently revised in the unemployment and underemploy- In contrast, there is very little national the association's resolution on integrated ment of people with high support needs data about traditional, segregated day employment to reflect an emphasis on who are considered to have the most services in terms of wages earned, skills the need to provide equal access to significant disabilities. Supported learned, movement to integrated em- integrated employment opportunities to employment, while not yet fully realizingployment, costs, and other quality of life people with the greatest support needs. its potential, offers by far the best measures. Yet the majority of funding, at Other highlights of the TASH Resolution opportunities for employment and a both the federal and state levels, contin- on Integrated Employment include: career for individuals most at risk of ues to support these traditional segre- living life without a job. Yet, studies gated programs. * Employment of people with significant show the reality for most of these disabilities must be in regular employ- individuals is lifelong segregation in day While there are approximately 150,000 ment settings where they work along treatment, habilitation, or sheltered people working through supported side people without disabilities. Fre- training. Various national studies have employment, approximately 450,000 quent and ongoing interactions and the shown: people remain in segregated, sheltered development of relationships must be day programs. insured. The majority of people with significant disabilities are in sheltered work- * Employment must result in meaningfulshops (44%) and day activity programs compensation for work performed, and 37%). include benefits comparable to co- workers without disabilities that perform Most employment service funding similar work. still supports segregated environments. Continued on page 25

PAGE 242 6TASH Newsletter, May/June 1999 NATIONAL CONVERSION EFFORTS

National Efforts to Promote Conversion Continued from page 24 For more information, or to TASH wishes to become involved in conversion acknowledge the generous efforts, please contact Pat Rogan at (317) 274-6806, fax: support of our newest Therefore, the Board of APSE has (317) 274-6864, e-mail: Lifetime Members resolved that: [email protected]. Michael Auberger * No person should be denied the Dianne Ferguson opportunity to have a real job in his or her community based on their disability Reference Elisabeth Healey or perceived support needs. Rogan, P, Held, M., & Rinne, S. (1998). Lifetime membership entitles you * The unacceptably high unemploymentA national study of conversion from to full international and chapter facility-based to community-based rate of people with disabilities must be member benefits for your lifetime. addressed through community-based, employment services. Indiana Univer- The cost can be remitted over integrated employment options. People sity: Institute for the Study of Develop- need jobs and supports for job success, mental Disabilities. several monthly payments. If you not segregation. are interested in becoming a lifetime member of TASH, contact Rose Holsey at OOOOOO 410-828-8274, ext. 100. Why is our nation still directing I.S most funding to support segregated day services?...Thousands of [people with disabilities] remain congregated and segregated in non- work day activity programs, despite a growing body of research showing that quality of life outcomes are ARE YOU A UNIVERSITY PROFESSOR? better for those living and working in integrated community settings. TASH has a Student Membership Program!

OOOOOO OOOOOO 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 * Youth with disabilities transitioning to complete a variety of journal article review and comparison exercises they assign. adult employment should move directly into integrated jobs, and should never The package works like this: be sent to workshops or segregated Professors can either assign TASH membership as one would a text book or package of facilities to "get ready" for employment. readings, or can offer it as an option. Either way, if ten or more students join, they receive a Integrated employment and necessary discount off the already low student rate. The discount amount increases as the number of supports must be available to all students signing up increases. students at the time of school exit, regardless of intensity of support needs. 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 * "Successful vocational rehabilitation semester with a year's worth of cutting edge research on their shelf and can build their employment outcomes" must include collection over the years to come. Under this plan, students receive all of the regular membership benefits during the coming year-in addition to an extra full year's worth of only integrated, community-based journals. employment, and appropriate experiences, supports, and opportunities must An introduction to TASH is likely to be one of the most valued resources you can offer be available to support this outcome. students as they enter the disability community in their professional capacities. To receive Placement in segregated settings should materials or to learn more about TASH's student membership program, contact Rose never be considered a successful Holsey, 410-828-8274, ext. 100 or e-mail: [email protected] outcome. BEST COPY AVAILABLE PAGE 25 TASH Newsletter, May/June 1999 THE EDUCATION CORNER

RECREATION IN SCHOOL and DURING TRANSITION BY TERRI SHEEHAN, Ph.D.

n 1975 historic federal legislation physical functioning; was passed to provide free and cognitive functioning; I.appropriate public education and communication and social skills; related services for children with increasing appropriate behaviors disabilities. One of the supportive for community inclusion; services specifically identified in the increasing age-appropriate behaviors; Education for All Handicapped Children and Act (PL 94-142) was recreation.It was enhancement of friendship and social identified as a related service that could support networks. be used to enhance the child's educational goals and his/her ability to learn and benefit from special education.

The reauthorization of this legislation in Recreation can only be 1997 renamed the law the Individuals with Disabilities Education Act (IDEA) an effective related (PL 101-476) and continued to include service if it is included recreation as a related service area. in the options of ser- However, research has shown that vices provided and recreation is the least used of all the used. related service areas.

Recreation may be underutilized in the schools because parents, teachers, and administrators are unaware of the benefits and outcomes of recreation in IDEA defines the components of recre- the educational development of children ation services as assessment, leisure with disabilities. Some of the areas in education, therapeutic recreation, and which recreation can be effective with recreation in schools and community individuals with developmental disabili- agencies. In order for recreation services to be included as a part of the child's ties include: Individualized Education Plan (IEP), the child would need to be assessed to determine his/her specific needs that would be addressed through recreation services. Parents may request that an assessment be completed by a qualified

1.128 Continued on page 27 PAGE 26 TASK Newsletter, May/June 1999 THE EDUCATION CORNER

Recreation in School and During improving functional and adaptive Transition abilities such as concentration, listening, Continued from page 26 following instructions, understanding rules and procedures, perceptual motor Terry Sheehan works at skills, balance, agility and endurance. St. Cloud State University These interventions and treatments in Minnesota. recreation professional, such as a would focus on assisting the develop- Certified Therapeutic Recreation Special- ment of functional skills necessary for Additional information on ist (CTRS) to determine if the child participation in leisure pursuits indepen- the IDEA is available at would benefit from recreation services to dently in the community. the federal government enhance the learning experience. web site http:// Recreation During Transition www.ed.gov through the Leisure Education Programs Office of Special The last component identified in the Education. Based on the needs identified through IDEA is recreation in the schools and assessment, a classroom-based leisure community agencies. This area, as well Information on recreation education program may be added to the as leisure education, will become more in the schools can be child's special education program. important during the mandated transi- obtained through Project Leisure education programs could be tion program which should begin at age TRAIN at the University used to develop: 13, but in some cases as late as age 16. of Wisconsin at La Crosse web site http:// Social skills such as The transition program from school to www.uwlax.edu/IIPER/ adult life should be based on the RM-TR/ cooperation student's interests and preferences with assertiveness respect to conversation skills vocational appropriate social interactions training, leisure, Recreation skills such as community participation sports and indepen- music dent living. TEACHERS: Children with volunteering Recreation nature and outdoor activities services in Significant Disabilities the school Participatory skills such as would be Public schools on beautiful Oregon used to promote participation in extra- coast have immediate openings for decision-making curricular activities as part of the innovative, collaborative teachers with follow through on choices transition to post-school life. Recreation licensure and education/experience self-initiation in community agencies would be used to with students with significant disabili- self-motivation develop independent functioning skills, ties. identification of resources in the commu- The development of these skills will nity and opportunities for inclusive Prefer skills in augmentative/alternative enable the child to participate in appro- participation. communication, behavioral analysis priate opportunities. including communicative functions, Recreation may be more effective than positive behavior intervention, sup- Therapeutic Recreation Programs other related services due to the experi- ports for inclusion, functional assess- ential nature of the service. However, in ment/instruction, curricular. modifica- The second component that could be order for recreation to be effective, it tion, transdisciplinary service delivery. added is therapeutic recreation. Thera- needs to be included in the options of peutic recreation would be provided on aservices provided and used. South Coast ESD one-to-one basis or in small groups in 1350 Teakwood order to achieve specific behavioral. Coos Bay, OR 97420 outcomes. These outcomes may include Attn: Sharon or Catherine 129 (541) 269-4520 PAGE 27 TASH Newsletter, May/June 1999 NATIONAL SUPPORTED EMPLOYMENT DATA & TRENDS

The National Supporta) Employment Consortium for tbe Competitive Employment of People witb Significant Disabilities BY GRANT REVELL

The National Supported Employ- greatly. For every instance of persons with served in supported employment. The ment Consortium (SEC) for the the most significant disabilities working SEC will widely disseminate information competitive employment of with ongoing supports in career-oriented gained from these evaluation studies and people with significant disabilities is positions that reflect personal choice and from other efforts to identify best designed to critically evaluate the pay well above minimum wage along with practices. effectiveness to date of supported benefits, others in supported employment employment and to provide training and are working on the fringes of the competi- technical assistance on exemplary tive labor market with marginal wages. programs and practices for the purpose The use of supported employment During 1999, the SEC is sponsoring monthly. of improving and expanding its impact. appears to have little impact to date on practioner focused sclay4ong training The SEC was funded effective October 1, the consistently high unemployment rate programs on areas such as successful job 1997 by the Rehabilitation Services of persons with a significant disability restructuring strategies, strategies for Administration for three years with a who say they want to work. Growth is providing supports in the workplace, and still occurring in the use of segregated approaches to disability spedfic supports for possibility of extension for an additional persons with a physical disabilit y,:mental two years. The SEC project is adminis- settings even as the service technology illness or brain injury. These trainings are. tered by the Virginia Commonwealth on how to support individuals across the being conducted all around the Country, University Rehabilitation Research and full range of disabilities in the commu- More information can be obtained on them, Training Center (VCU RRTC), and nity continues to improve.Funding by contacting [email protected] or by consortium members include the possibilities such as the Home and Calling (804) 828-1851. A buiiness Indiana Institute on Disability and Community Based (HCB) Medicaid partnership training series is being conducted' Community, the Boston Children's Waiver program remain underutilized for by Transcen; Inc (mleedy®transcen:Org or Hospital Institute for Community supported employment services in most call (301) 424-2002).. states, and the challenge remains of how Inclusion, Transcen, Inc., and the A week long supported einployment summer University of Montana Rural Institute on to merge natural and other supports into :institute`will be held in Ridimaridi Virginia Disabilities. Paul Wehman at the VCU effective and real individualized on- the week, of August 9-14; 1999 to provide RRTC is the principal investigator. going support plans. MtenSive instruction on supported eniplOY= ment best pradiCes The SEC is designed to address the The SEC is conducting studies in ten All of the. memberSaresInValved following question: At the state, commu- areas to identify the best practices and a.VarietY of teehnical assistance activities nity, and individual participant level, develop new strategies that address the More information can be obtained 'onthesEc what are the most effective practices and challenges facing supported employ- evaluation suidies- and trainingiand-iedmiccd:: ment. The evaluation study areas are: assistance.activities:through its.website.at programs that improve the competitive )ittp://wwW.iiii.edUirric.webiiic.or employment opportunities and supports statewide systems change, cost benefit Contacting Grant Revell, SEC Project available to people with significant analysis, extended services, employer .Manager, at [email protected]:- disabilities? It has been more than 10 impact, meaningful employment out- (email), 804 828-1851 (voice); 804 828- years since supported employment was comes, consumer self-determination and 2I93 (fax), or 804 828-2494 (TDY)... added as a recognized rehabilitation the use of personal assistance services, outcome through the Rehabilitation Act natural supports, analysis of federal and Amendments of 1986, and the impact ofstate policies, use of interagency agree- supported employment still varies ments, and persons unserved or under- fAS 130 BEST COPYAVAILABLE PAGE 28 TASK Newsletter, May/June 1999 INCLUSION IN THE CLASSROOM

Z-000°"."`"---100ibeidgoill'"°m11°"1"siiiift40- AL/ Kids Seek Ordinary Goals BY EMILY JONES(Age 14)

Ithink it's disturbing that Evergreen School District (located in Vancouver, Washington) is going back to self-contained classrooms, as reported in the "Special Ed Plan

Assailed" article that ran in the Columbian newspaper on April 1st.After finally winning the battle to get kids with disabilities in regular classrooms, we are going to go back to square one. I thought we already decided that being around peers and positive role models was most effective. Now we are reversing what we know is best and what we've seen work so we can bring back what we already had -- nothing. I believe that we have made a lot of progress in special needs education and we should not let ourselves regress into what we already came from.

I have a sister who is three years old and has Down syndrome. She, along with most 4 children, need to be in a setting where they are with peers and I don't mean other people with Down syndrome. I think of her no differently than the rest of my siblings; they all need to have a learning environment with positive modeling behavior. If they are in a class with all children with disabilities, it would be only natural for them to copy off each other -- one unwanted behavior turns into a whole room full of misbehaving children. However, if what they are around is quiet, attentive children, this is the behavior they will model.

If we start separating them in school, it will only continue into the rest of their lives.I know my parents want me to grow up, get a job, and live on my own. I think this is every parent's goal for their children. Why should the goals be different for children with disabilities?

I thought the goal was to have kids with disabilities progress into as "normal" a life as possible. Don't people realize that by going back to self-contained classrooms, we are giving up our dreams?

Abby (left, 3 1/2) and Emily (right, 14) Jones reside with their parents and their three other siblings in Vancouver; Washington.The above article contains excerpts from an oped piece written by Emily that appeared in the April 14th Columbian, a newspaper in Vancouver, Washington.

131 PAGE 29 TASH Newsletter, May/June 1999 I

F eature d Speakers: disabilities." David Finkelhor, Ph.D Patricia Dick Sobsey, Ph.D Dick Sobsey Sullivan, Ph.DRuth Ryan, MD. Deb JonesJohn Knutson, Ph.DTanis Doe, Ph.D Forregistrationinformationcontact Deb at TheInstituteon Disability/LIAP 603.228.2084 or visit us on the web at http://iod.unh.edu

CoS P ONsoRs:LINI-1, Institute on Disability/L1AP and the UNH Center on Child Victimization NH Division of Children Youth and Families NH Division of Developmental Disability Services.

1 PAGE 30 tiTASH Newsletter, May/June 1999 MARK YOUR CALENDAR

1999 Calendar of TASH Chapter and Member- Sponsored Conferences

JULY SEPTEMBER DECEMBER

Project CHOICES Summer Institute:National Spinal Cord Injury "Kids: Our Future" Association July 22 and 22 Annual Meeting and Education Crowne Plaza Hotel, Springfield, Illinois Conference Annual TASH International Contact: Project CHOICES September 26-29 Conference Phone: 630-778-4508 Washington, D.C. Marriott at "TASH 2000 - Our Turn Now" E-mail: [email protected] Metro Center December 8-11 Contact: Denise Marshall Chicago Hilton and Towers CAL-TASH Summer Symposiums in Phone: 410-828-8274, ext. 103 Contact: Kelly Nelson Santa Barbara Phone: 410-828-8274, ext. 105 or July 26-27 - "School Inclusion" 1-800-482-8274, ext. 105 July 29-30 - "Positive Behavior OCTOBER E-mail: [email protected] Support" Contact: Eileen Medina Phone: 805-967-2042 8th Annual St. Amant Centre E-mail: cal- tash@ceo .sbceo. k12. ca. us Conference "20th Century Trends, 21st Century Services?" October 7 and 8 Do you have an upcoming TASH chapter Canadlnn, Winnipeg, Manitoba meeting or member-sponsored conference Contact: Colette Choquette that you would like to announce in the Phone: 204-256-4301, ext. 298 Newsletter? Send notice of the conference to Denise Marshall at [email protected] at least 6 weeks before the event date. We will make every effort to include the event in the meetings calendar. 133 PAGE 31 TASH Newsletter, May /June 1999 TASH NEWSLETTER

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. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President 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 James Meadours 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- Patrick Schwarz 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 Jacqueline Thousand

MEMBERSHIP INFORMATION.

Referred by: 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

Please notify TASH of your new address. ()I would like to spread my payments out. Moving? Enclose 1/3 and you will receive 2 additional invoices at monthly intervals. General Membership (individual) $88. If you are applying for a student membership, please provide the following Agency/business/university/college/library/school $2.00. information: (allows 3 conference attendees at the member rate) Department Self Advocate, Parent, Full Time Student, Direct Careworker/Para professionaUPersonal Attendant (for whom payment of full fee would College/University present a hardship) $45. Student I.D. Number Family (group rate) $136. Lifetime Member $1000. Anticipated year of completion Add $10 for postage costs for members in Canada and $25 for members outside the U.S. and Canada. ( ) Include an additional $15 if you are applying for an individual membership Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. or $30 if you are applying for an organizational membership and also want to bank. Add a $20 processing fee if check is not drawn on a U.S. bank. If you become a member of your local chapter. would like to charge your membership, please fill in the necessary information: Please make check payable to:TASH () Mastercard () Visa () Discover Address: 29 W. Susquehanna Avenue, Suite 210 Card Number Expiration Date Baltimore, MD 21204 Signature Telephone:410/828-8274 Fax: 410/828-6706 fAsTASFI 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, Neither X0= 3103 1,1150 0:00:00 TDD: 410/828-1306 ERIC Clearinghouse Web Site: www.tash.org 1920 ASSOCIATION OR RESTON 991 20191 - 154599 Address Service Requested

BEST COPYAVAILABLE MAY/JUNE 1999 134 PRINTED IN THE U.S.A. I I L

4A L L

Ff:41" 1. itiftk.e.,_24%-trt a t- I

URGENT! Dated Material Inside! TASK Board Election Ballot FROM THE EXECUTIVE DIRECTOR

TABLE OF CONTENTS IDEA Enforcement Communication Rights Passage of MiCASSA From the Executive Director Page 2 CollaborationwithGeneral Educators MiCASSA Update Page 4 Criminal Justice Related Issues

Talking Politics:Empowering TASH's Operations-Related Priorities Communication Aid Users Page 8 include:

Staff Changes at TASH Page 15 Improve our Web Site and Electronic Communication Learning from Helen Keller Page 16 From the Executive Director Synthesize Resolutions and Develop New Resolutions TASH Executive Board Election Page 21 BY NANCY WEISS Better Communication with Chapters 1999 TASH Annual ConferencePage 28 Develop a Handbook for Students on Highlights of Summer '99 Board Their Rights Under IDEA Meeting Fiscal Development

The TASH Executive Board met for two Financial Report: TASH's fiscal health agenda-packed days in Chicago in mid- continues to improve. The 1998 Finan- TASH (formerly The Association for Per- July. Highlights of the meeting are as cial Statements were reviewed. 1998 sons with Severe Handicaps) is an inter- follows: revenues increased almost 30% over national advocacy association of people Fiscal Year 1997, and have increased by with disabilities, their family members, Strategic Plan: The Board reviewed more than 265% over the past five years. other advocates and people who work progress on TASH's 1999 Action Assets more than doubled from 1997 to in the disability field. TASH actively pro- Priorities. Progress had been made on 1998 as well, putting TASH in a relatively motes the full inclusion and participa- all ten action plans. TASH's Advocacy- tion of persons with disabilities in all Related Priorities for 1999 include: Continued on page3 aspects of life.To receive an information 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]. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and MISSION STATEMENT 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 1999 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, Acting Director 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 and inequities; 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 (LASH), 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 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: pnewton@tashorg. PAGE213 6TASH Newsletter, July/August 1999 FROM THE EXECUTIVE DIRECTOR

Highlights of Summer '99 Board Conference Marketing:Priscilla A New Name for the Newsletter:It is Meeting Newton described efforts to secure widely agreed that the title "The Newslet- Continued from page 2 sponsorships and related support for the ter" doesn't do justice to this publica- annual conference. Last year the tion. The Newsletter is not a newsletter following companies participated: Black (with updates about who received grants strong financial position for the coming & Decker, Columbia Winery, Microsoft, and promotions) but much more like a years. Pepsi Cola, the Seattle Seahawks, small magazine. Various options were Southwest Airlines, and William M. discussed. It was agreed that the Board, Development Efforts: Joe Wykowski, Mercer Co. This year we are offering Committee Chairs and Chapter officers Chair of the Finance Committee is sponsors three levels at which they can would be surveyed by e-mail with the working on a number of development- participate, ranging from $2,000 to final possible names published in the focused initiatives including corporate $7,500. We are also working with the Newsletter for member input. relationships and a planned giving Chicago Mayor's Office for People with campaign. Disabilities to secure in-kind services to Membership Committee Report Liz help promote the conference. It is likely Obermayer presented the Membership Information and Referral System: that the Mayor's Office for People with Committee report. The results of a Denise Marshall of the TASH staff is Disabilities will be a major sponsor of membership survey were reviewed. working on a triage system and comput- this year's conference. Several changes to membership catego- erized data base for responding to ries were discussed. It was agreed that requests for information and referral. Updates on Other TASH-Organized we would eliminate the reduced-fee The Board suggested we look into Conferences: In addition to TASH's membership categories (for students, employing a VISTA worker to enter annual conference, staff are working on self-advocates and parents) and substi- information and handle general informa- three other events. TASH is organizing tute an associate member category tion requests. the annual conference of the National available to anyone with a household Spinal Cord Injury Association. It will income of $25,000 or less annually. We Publications Catalogue: Denise is beheld September 26 - 29, 1999 in are also eliminating the "organizational finalizing plans for the Publications Washington, D.C. We are also planning representatives" feature of organizational Catalogue. The purpose of the catalogue a two-day workshop with the Center for memberships, instead offering discounts is to disseminate the work of TASH Human Policy for the Spring. The topic to three or more individuals joining members. We will likely contract with an will be "Organizing for Disability Rights from the same organization. The group- existing company to produce the TASH and Inclusion." Finally, along with an family rate is being eliminated as well, Book Store on-line, publish the catalogue international planning committee, we and it was agreed that the price of a and receive and fill orders. are organizing the International Confer- lifetime membership would be increased ence on Self-Determination and Indi- to $1,300 on January 1st of 2001. TASH Annual Conference Update: vidualized Funding for Seattle, July 29- Kelly Nelson reported that proposals are 31, 2000. Governmental Affairs-Marcie Roth in and the review process is almost and Mike Auberger reported on TASH's completed. Presenters will be notified of Revision of Bylaws: We have had an governmental affairs work. The Board their acceptance in August. A number of attorney review our bylaws and make discussed the legislative agenda for exciting events are being planned in recommendations for revisions. The TASH and strategies for accomplishing conjunction with the conference, Board is considering the pros and cons legislative and public policy changes in including a beach party reception as a of re-incorporating in Maryland. This light of Marcie Roth's departure (see kick-off for next year's conference in decision must precede final revisions to page 15).It was agreed that the imple- Miami and a TASH 25th Anniversary the bylaws as they need to conform to mentation and enforcement of IDEA, CD. the laws of the state in which the along with passage of MiCASSA should organization is incorporated. Once the continue to be the major focal points of Conference Yearbook: 1999 will be bylaws are revised, a vote of the mem- governmental affairs work. the inauguration of the TASH Yearbook. bership will be taken by sending ballots The Yearbook will be a compendium of out with renewal notices. Committee Issues:Several changes in selected manuscripts describing many of Board assignments were made. Patrick the conference presentations. The Discussion of Name Change: The Schwarz will serve as Board Liaison to Yearbook will be available for pre-sale at Board again discussed concerns about the Elections Committee. Jacki Ander- a reduced rate in conjunction with TASH's name. A sub-committee volun- son will serve as Liaison to the Publica- conference registration. The idea for the teered to discuss name change options tions Committee. Liz Obermayer will yearbook was suggested by Doug Fisher, and make a recommendation to the Chair of the Education Committee. He Board and membership. and Craig Kennedy will serve as Editors. Continued on page 14 'PAGE313 7TASH Newsletter, July/August 1999 MI CASSA UPDATE

America's People with Disabilities-- Seniors,Adults and Children with Disabilities-- Need the edicaid Community Attendant Services and supports Act (MiCASSA)in 1999

disabilities, want services in the most Specifically, MiCASSA will: integrated setting possible. People with disabilities and their families want REAL*Provide community attendant services this article. choice, which means: and supports which range from assisting with activities of daily living (eating, - equitable funding opportunities; toileting, grooming, dressing, bathing, - no programmatic or rule disincentives transferring), instrumental activities of Inadequacy of Long-Term Service to community services; daily living (meal planning and prepara- Delivery System - options for services delivery to include tion, managing finances, shopping, For decades people with disabilities,agencies, vouchers and fiscal intermedi- household chores, phoning, participating both old and young, have wanted aries. in the community), and health-related alternatives to nursing homes and functions. other institutions when they need long- Medicaid Community Attendant term services.Our long-term care Services and Supports Act of 1999 Include hands-on assistance, supervi- system has a heavy institutional bias. HR 2020, the Medicaid Community sion and/or cueing, as well as help Every state that receives Medicaid must Attendant Services Act, MiCASA, was people to learn, keep and enhance skills provide nursing home services, but introduced on June 24th, 1997 by to accomplish such activities. community-based services are optional. Speaker of the House Newt Gingrich, Over eighty percent of Medicaid long- and gained bipartisan support and a Require services to be provided in the term care dollars ($41 billion) pay for hearing in the House Commerce Com- most integrated setting appropriate to institutional services, while the remain- mittee. When the legislative session the needs of the individual. ing 20% must cover all the community- ended, this version of MiCASA died. based waivers and optional programs. However, the bill has since been rewrit- Provide Community Attendant Services ten with input from groups from the and Supports that are: America's long term-service system must aging, developmental disability, indepen- change. Created over thirty years ago, it dent living and other groups interested - based on an assessment of functional is funded mainly by Medicare and in long-term services and supports. This need; Medicaid dollars. These are medical new version is called MiCASSA (Medic- - provided in home or community dollars which were not originally aid Community Attendant Services and settings such as school, work, recreation, conceived to meet the long-term care Supports Act). or religious setting; needs of people. A national long-term service policy should not favor any one MiCASSA gives people real choice in setting over the other. It should be long-term services. Amending Title XIX neutral and allow the users to choose of the Social Security Act (Medicaid), where services should be delivered. The MiCASSA creates an alternative service iCASSA's goal is to provide current system is not neutral. called Community Attendant Services flexible, consumer-responsive and Supports. It allows individuals services, which means that th Community services on average have eligible for Nursing Facility Services or person receiving the services been shown to be less expensive and Intermediate Care Facility Services for decides how, when and where more desired by individuals than the Mentally Retarded (ICF/MR) the they are provided.In short, institutional services. Nursing home carechoice to use these dollars for "Commu- MiCASSA will allow for consumer costs taxpayers more than it costs to nity Attendant Services and Supports." control. support people in their own homes, even The dollars would follow the individual, when these people are receiving other rather than being committed to the public benefits. People with disabilities, facility or the provider. both old and young, including those with significant mental and/or physical Continued on page 5

BEST COPY AVAILABLE PAGE/43 TASK Newsletter, July/August 1999 MICASSA UPDATE

America's People with Disabilities Need Provide a maintenance of effort be delegated or assigned as allowed by MiCASSA in 1999 requirement so that states can not state law). These can be done through Continued from page 4 diminish more enriched programs hands-on assistance, supervision and/or already being provided. cueing. The term also includes help with learning, keeping and enhancing selected, managed and controlled by MiCASSA also provides grants for Real skills to accomplish such activities. the consumer of the services; Choice Systems Change Initiatives to - supplemented with backup and help the states transition from the These services and supports, which emergency attendant services; current, institutionally-dominated include back-up, are designed and - furnished according to a service plan service systems to systems more focused delivered under a plan that is based on a agreed to by the consumer and including on community services and supports. functional needs assessment and agreed voluntary training on selecting, manag- Each state will create a Consumer Task to by the individual or family, in the case ing and dismissing attendants. Force to develop a plan for transitioning of a child. In addition they are furnished services into a more community-orientedby attendants who are selected, man- Allow consumers to choose among system. A majority of the members mustaged, and dismissed by the individual or various service delivery models, includ- be people with disabilities or their family, and include voluntary training for ing vouchers, direct cash payments, representatives. The Secretary of Health the individual or family on supervising fiscal agents and agency providers, all of and Human Services, along with the attendants. which are required to be consumer National Council on Disability, will controlled. review regulations and report to Con- MiCASSA specifically states that services gress on how to reduce excessive use of should be delivered, "in the most Allow for an "individual's representa- medical services. The Secretary will also integrated setting appropriate to the tive" to be authorized by the consumer establish a task force to examine financ- needs of the individual" in a home or to provide assistance in instances where ing of long-term care services. community setting, which may include a the consumer is not able to direct his/her school, workplace, recreation or religious own care independently. A representa- setting. tive can be a friend, family member, guardian, or advocate. 2.If someone can't manage their attendant services completely independently, is Allow health-related functions or tasks SUIPIDCET he/she still eligible for MiCASSA services? to be assigned to, delegated to, or Yes. People who have difficulty manag- performed by unlicensed personal MICASSA ing their services themselves due to a attendants, according to state laws. cognitive disability, for example, can have assistance from a representative, Cover individuals' transition costs from NM! like a parent, a family member, a a nursing facility or ICF/MR to a home guardian, an advocate, or other autho- setting. Examples of such costs include rized person. rent and utility deposits, bedding, basic Frequently Asked Questions About kitchen supplies and other necessities MiCASSA 3. Do you have to be impoverished to be required for the transition. We've attempted to provide answers to eligible for MiCASSA? some of the most frequently asked No. If you are eligible to go into a Serve individuals with incomes above questions about eligibility and coverage nursing home or an ICF/MR facility, you the current institutional income limita- criteria under MiCASSA and how the would be eligible for MiCASSA. Finan- tion, if a state chooses to waive this program will operate. cial eligibility for nursing homes is up to limitation to enhance the potential for 300% of the SSI level. In addition, states employment. 1. How are community attendant services can choose to have a sliding fee scale for and supports defined in MiCASSA? people of higher incomes. MiCASSA Provide for quality assurance programs In MiCASSA, the term community specifically references this as an incen- which promote consumer control and attendant services and supports means tive for employment. This sliding fee satisfaction. help with accomplishing activities of scale can go beyond the current Medic- daily living (eating, toileting, grooming, aid eligibility guidelines. Allow states to limit the aggregate dressing, bathing, and transferring) amount spent on long-term care in a yearinstrumental activities of daily living 4. Is MiCASSA biased towards an agency to that amount the state would have (meal preparation, managing finances, delivery model? spent for a year of institutional services shopping, household chores, phoning, No. MiCASSA assumes that "one size for such eligible individuals. and participating in the io munity), does not fit all."It allows the maximum and health-related furledUhichcan Continued on page 6 BEST COPY AVAILABLE PAGE 5 TASH Newsletter, July/August 1999 MICASSA UPDATE

America's People with Disabilities Need ing funding for certain industries and These programs must maximize con- MiCASSA in 1999 facilities. sumer independence and direction of Continued from page 5 services, and measure consumer satisfac- 7.Will MiCASSA be expensive? What tion through surveys and consumer about the 'woodwork" effect? monitoring. States must make public the amount of control preferred by the MiCASSA assures that a state need spendresults of the quality assurance program, individual with the disability. Options no more money in total for a fiscal year as well as an on-going process of review. include: vouchers, direct cash payments than would have been spent for people Sanctions must be developed and the or a fiscal agent, in addition to with disabilities who are eligible for Secretary of Health and Human Services agency delivered services. In all these institutional services and supports. must conduct quality reviews. delivery models the individual (or a child's family) has the ability to select, There is a lot of discussion about the 10. What is the purpose of the Real manage and control attendant services people who are eligible for institutional Choice Systems Change Initiatives section and supports, as well as help develop a services; that there are people who of the bill? service plan. Choice and control are key would never go into an institution, but MiCASSA brings together on a consumer concepts, regardless of who serves as the would jump at the chance to use task force the major stakeholders in the employer of record. MiCASSA. (This is called the woodwork fight for community-based attendant effect, as in "coming out of the wood- services and supports. Representatives 5. Will MiCASSA replace existing commu- work.") The states of Oregon and from developmental disabilities councils, nity-based programs? Kansas have data to show that fear of the independent living councils and councils MiCASSA does not affect existing woodwork effect is greatly exaggerated. on aging, along with consumers and optional programs or waivers and There may be some increase in the service providers would develop a plan includes a maintenance of effort clause number of people who use the services to transition the current institutionally to ensure and supports at first, but savings will be biased system into one that focuses on these realized by using the less costly commu- community-based attendant services. programs nity-based services and supports, as well Closing institutions, or even reducing are not as through the decrease in the number ofbed spaces, must be thought through by dimin- people going into institutions. the people that have an investment in ished. the final outcome the consumers. Waivers Belief in the woodwork effect assumes a The plan envisions ending the fragmen- include a lot of "free care" is now being delivered tation that currently exists in our longmore by caregivers. There is a real question term service system. enriched whether this care is truly "free." Re- package of search on the loss to the economy of the In addition, the bill sets up a framework services for "free" caregivers is just being initiated. and funding to help the states transition those individuals who need more from their current institutionally services. With MiCASSA, people who 8.What are the transitional services? dominated service model to more are eligible for nursing homes and ICF/ Currently, Medicaid does not cover some community-based services and supports. MR facilities can choose community essential costs for people coming out of States will be able to apply for systems attendant services and supports as a nursing homes and ICF/MR facilities. change grants for activities like: assess- unique service that is a cost-effective and These include deposits for rent and ing needs and gathering data, identifying high-quality option. The money follows utilities, bedding, kitchen supplies and ways to modify the institutional bias and the individual rather than being directed other things necessary to make the over medicalization of services and to a facility transition into the community. Covering supports, coordinating between agencies, these costs would be one of the services training and technical assistance, 6.Is MiCASSA a new unfunded mandate? and supports covered by MiCASSA. increasing public awareness of options, No. MiCASSA is a way to make an downsizing of large institutions, paying existing mandate for nursing homes and 9. How is Quality Assurance addressed in for transitional costs, covering consumer institutions for people with mental MiCASSA? task force costs, demonstrating new retardation responsive to the needs and States are required to develop quality approaches, and other activities which desires of the consumers of these assurance programs that set down address related long-term care issues. services. MiCASSA says the people who guidelines for operating Community are already eligible for these services will Attendant Services and Supports, and MiCASSA Helps Families of simply have a choice regarding where provide grievance and appeals proce- Children with Disabilities they receive services. MiCASSA would dures for consumers, as well as proce- The vast majority of families don't want adjust the current system to focus on the dures for reporting abuse and neglect. to place children with disabilities in recipients of service, instead of mandat- 140 Continued on page 7 PAGE 6 TANI Newsletter, July /August 1999 MICASSA UPDATE

America's People with Disabilities Need dressing, meal preparation, money supervise their own attendants. For MiCASSA in 1999 management and certain health-related them, MiCASSA provides options such Continued from page 6 tasks. And MiCASSA will be available to as vouchers with which to pay atten- young adults when they move out of dants (including family members) and their parents' homes into the community. training in directing and managing their institutions. Families want children to care. For those who prefer not to live at home where they can maintain MiCASSA Means REAL Choice manage their own services, it also family ties, go to school and grow as The demographics of our nation are provides for a consumer-directed agency other children do. Families also want changing. The population is aging, and model. their children to have a secure future andbreakthroughs in medical technology are real options for home and community increasing the life expectancy for all MiCASSA's goal is to provide flexible, services and supports when their familiespeople including people with disabili- consumer-responsive services, which are no longer providing full-time care. ties. Most Americans who need long- means that the person receiving the term services and supports would rather services decides how, when and where Young people with disabilities are not in remain in their own homes and commu- they are provided. In short, MiCASSA institutions or foster care because of the nities than be forced to move to a will allow for consumer control. amount of care they need. They are in nursing home or other institution. MiCASSA redirects the focus of the these settings because of the lack of How Can You Help Support Medicaid long-term services program attendant services and supports. Many Passage of MiCASSA? from institutions to home and commu- children with significant disabilities do, Keeping people in the community allows in fact, live at home with their families. nity services and supports. It enables the possibility for individuals with Some of the real reasons why children people to make real choices. disabilities to train for work so they can and young adults with disabilities go become taxpayers rather than tax users. into institutions or nursing homes are: Studies show that people currently living The Federal government needs to work in in America's institutions and nursing partnership with the states to create Parents can't hold down a job that homes do not have more significant flexible delivery systems that give people supports their family and provide full- disabilities than people who are living in real choice. time care to a child with disability; their own homes with attendant services and supports. So why do they go into When your senators and congressional representatives are back at home in your Parents may be able to provide much ofinstitutions when they would rather live state for weekends or during their breaks, the care that a young child needs, but in the community in their own homes? plan a visit and update him/her about the may not be physically able to manage Because: bill and why it is important that he/she lifting and positioning as the child support it. We need Congressional grows; +Family members and other informal representatives to sign onto MiCASSA as caregivers "burn out" or "age out"; co-sponsors. Parents fear that when their child is old Government does not provide a real choice for home and community-based The elected national representatives in enough to move out of the house, no your district need to hear from you. services; independent living, community options Without constituents on a grassroots level will be available; Home care pays caregivers low wages contacting their representatives, MiCASSA and generally offer no benefits, which will not gamer the support it needs for Public policy supports institutions, not results in a shortage of qualified provid- passage. people with disabilities and their ers; families; and People don't know that there are DONT KNOW WHO YOUR alternatives to nursing homes and other CONGRESSPERSON IS? institutions. Contact the Congressional Switchboard at Family members may not know that 1-800-962-3524, or call your local there are alternatives to nursing homes The needs of people who use community Democratic or Republican party headquar- and other institutions for their children ters (listed in the local telephone direc- with disabilities. attendant services and supports are tory). Don't forget to ask for the local understood best by people with disabili- address and phone number for your MiCASSA provides Medicaid funding for ties. MiCASSA would give people with representatives. You can also e-mail your attendant services and supports for disabilities a policy-making role in representatives right through the TASH people of all ages. Services can be designing America's community atten- web site.Visit the site at www.tash.org, click on "Governmental Affairs," then provided at home, in school, at work anddant services and supports program and "Government Affairs Links," then "U.S. at play. Assistance is available for a deciding what services will be available, how they are paid for, and who is Senate" or "U.S. House of Representa- broad range of needs, such as bathing, tives." eligible. Many people with disabilities can and want to select, train, and

PAGE7141TASKNewsletter, July /August 1999 THE RIGHT TO COMMUNICATE

ov)

EMPOWERING COMMUNICATION AID USERS BY ROSEMARY CROSSLEY

Recently I had a phone call waiting for this, his communication professionals, but also in their families which reminded me how seems to have fallen into a black hole, and the community at large. important communication is, with no new partners being trained. Disempowerment is often associated and how vulnerable it is for people with an absence of communication, who cannot use their own voices. While a number of factors contributed either because a means of communica- to this tragedy, it seems reasonable to tion has not been provided, or because The caller was 'Laura," mother of suggest that if everyone in Fred's life an individual's communication strategy "Fred," an adult with multiple had recognized that he had a right to is for some reason unacceptable. disabilites who had used a Canon communicate, it may have been Communicator (a miniature type- prevented. The day center would An associated issue is the relative writer) at his day center and at home have enabled him to use his Commu- importance given to the convenience of for many years. Because of his nicator. The attendants would have people without disabilities and the disabilities, it is essential that some- been trained. Back up would have convenience of people with communica- one holds the communicator and been provided for Laura as she aged, tion disabilities. While this obviously supports Fred's arm while he types. or a more independent communication Last year, Fred moved to another day strategy could have been found for Fred. The agency responsible for center, which apparently doesn't Every person, regardless of the providing the new aid would have believe in using any communication severity of his/her disabilities, done so more quickly. And so on. As aids, and his attendant carers has the right and the ability to it was, communication was apparently changed. This left his elderly mother communicate with others, as his only communication partner, seen as an optional extra for Fred, to be provided or not at the whim of express everyday preferences and she only got out Fred's Canon and exercise at least some others. Silencing Fred was easy, when she wanted to know something, control over his or her daily life. because without his Communicator, he not when he had something to say. Each individual, therefore, had no way of complaining. should be given the chance, Laura called me to say that she had training, technology, respect and just discovered that Fred is blind in DISEMPOWERMENT encouragement to do so. one eye, due to a detached retina A journey of a thousand miles starts with caused by him hitting himself when he one step. The first step in establishing a was frustrated. She feels very guilty right to communicate for people without affects people who use facilitated about this, and feels that his reduced speech is to examine the current situa- communication opportunities have communication, it also affects everybody tion. An over-riding theme in the whose communication is partner- contributed to his frustration. Laura accounts of communication aid has been trying to get Fred a Macaw dependent. The issue of convenience users is the disempowerment which arises often with communication boards, (a communication device on which many people with communication words and sentences are recorded by which are inconvenient for the person disabilities, regardless of diagnosis or receiving the communication because a speaking person) for some time, age, have experienced often at the which would be easier for him to use hands (or on the recommendations of Continued on page 9 without facilitation.While he was .1 44 PAGE 8 TAW. Newsletter, July/August 1999 nc.c-rrylovAVAII ARC THE RIGHT TO COMMUNICATE

Talking Politics: EMPOWERING "Whenever I meet someone new...if I don't be uncomprehending or unfeeling, if not COMMUNICATION AID USERS speak to them I offend them... If I do speak to deaf. At the age of 12, Anne McDonald Continued from page 8 them they react in one of four ways: they look heard a nurse say loudly that she would at me in horror and think that I am mad; they die from starvation in the next six shout at me thinking my impeded speech months. At age 16, she was introduced means I am also deaf; they hear my voice and to a middle-aged woman who said "If it they have to look at the board for begin to ask those around me questions which was a puppy you'd knock it on the head, relatively long periods of time while the should be asked of me; or they speak to me as wouldn't you?". At age, 20, after Sixty user is putting together his or her they would to a baby or a beloved family pet." Minutes screened a story about her, a message. People who use comunication viewer wrote in to say she should be boards may have their attempts to The perception of non-speakers as stupid killed. The interesting thing about this communicate ignored or find that is raised frequently. Writing in 1981 last comment was that the producer had people, even family members, cannot be about community attitudes, Maree no hesitation in putting it on the air, an bothered to use the board and shut it Ireland remarked that, action which would be almost inconceiv- away. Part of the appeal of electronic able if she had been a member of another communication aids seems to be that "especially with nonverbal people, there is still devalued group. they reduce the effort and time required the assumption that we are people with less of people without disabilities as commu- intelligence than themselves...Like that TALKING POLITICS nication partners. saying 'Innocent until proven guilty,' we A significant social movement becomes should adopt a saying 'Intelligent until proved possible when there is a revision in the Jim Viggiano, a person with cerebral unintelligent' without the need to prove it." way in which a group of people see a palsy who lives in an institution wrote: certain situation; they view it not as a In 1996 Maree, now a lawyer, had the circumstance that warrants charitable "Half of the time I go to communicate some of opportunity to explore current assump- consideration, but the staff say, 'What the hell do you want?' or tions when she and some other Commu- as an injustice 'Get lost,' or 'I haven't got the time for that nication Aid Users Society (CAUS) which is intolerable damn spelling board.' Some people have members attended the memorial service to society. The deaf asked me questions and walked away before I for nine residents of a state institution community has point to a word to answer" who had died in a fire. Because the produced many CAUS members had visible disabilities, representatives who Most communication aid users, even they were presumed to be residents of advocate for people those with very significant physical the institution and a number of strangers who are deaf in disabilities, still rate their communica- came up and welcomed them with general and com- tion difficulties as their most significant gracious condescension. Two people plain of prejudice disability. Ruth Sienciwicz-Mercer patted Maree on the head. and discrimination - wrote that: who perceive their Evelyn Mosely, a communication aid problems as stemming from injustice "I have found that the most difficult aspect of user, found that when she lost her rather than simply being the way things my disability has been my lack of speech. speech after an attack of encephalitis, are for people with communication People in the community at large have a more than her communication was disabilities. What about non-speakers? tendency to equate one's speaking abilities disregarded: with one's intelligence... The misconceptions Not only has action by non-speakers not on the part of those around a non - speaking "Meeting new people ... was a frustrating been documented in the same way, its person can be both painful and dangerous to experience.... Even when they became aware absence has been noticed. In Stigma, that person, as it usually means he or she will of the communication board they would direct Erving Goffman suggested that the be treated in a sub-human manner" the conversation to the person with rne, not to sociological study of stigmatized persons me personally, and they avoided eye contact. was "usually connected with the kind The varying ways in which speakers This was when the impact of the communica- of corporate life, if any, that is sustained underestimate or misdiagnose people tion barrier really hit me. I had become by those of a particular category." He with significant speech impairments are invisible." cited any group of people who lack summarized by Bob Counsell, who has speech as a group "whose peculiarity severe dysarthria (difficulty in articulat- Sometimes it is better to be ignored apparently discourages any group ing words). He describes the different almost all non-speakers experience formation whatsoever" (Goffman, 1968: responses provoked by his speech: people talking about them in their presence. It is as if they are believed to Continued on page 10 PAGE91 43TASK Newsletter, July/August 1999 THE RIGHT TO COMMUNICATE

Talking Politics: EMPOWERING decades), the first people with significantWilliams tried to make the connections COMMUNICATION AID USERS communication and physical disabilities necessary to create a movement for non- Continued from page 9 from birth are now educated adults with speakers' rights through Talking/Politics, a jobs and children. Having succeeded in newsletter for people interested in the terms of the wider society, they have thinking together about communication 33-4). In the 1960's, before the introduc- the skills necessary for effective lobby- rights, set up in 1989 by Mayer Shevin. tion of Blissymbols (graphic symbol ing, if they choose to use them. Williams said that: language or pictographs) and the development of electronic communica- "In the words and deeds of Anne McDonald tion aids, this would have been a fair and others with severe disabilities worldwide, comment, as without advances in Unless we can establish an over-riding we can hear the makings of a clarion call if we communication techniques and technol- right to communicate -- encompass- choose to listen. It is a clarion call to action ogy it was then impossible for non- ing the right to accurate diagnosis similar to one issued nearly a decade ago. In speakers to undertake group action. Any and early intervention, the provision 1979, the Centre for Human Policy helped stir of communication aids as a matter groups of people who lack speech would many of us to action by calling for a universal of right, and access not just to therapy, have consisted of individuals whose community imperative. Ten years later, the dysarthric speech was not understood by but to mainstream education ... we will find ourselves reaching a dead end. typical life experiences of people labeled outsiders, and who were therefore not severely or profoundly disabled demand recognized as communicating. A lucky few will get the communica- that we take another step closer to true tion aids and education necessary to community. By the 1980s enough non-speech people achieve their potential, a larger had obtained a means of verbal commu- group will get limited vocabulary One way we can do this is by issuing a nication for it to be possible for them to communication aids and limited communication imperative which affirms and form their own organizations. When the education -- enough to complain but asserts that: Every person, regardless of the Communication Aid Users Society not enough to succeed -- and the severity of his/her disabilities, has the right started in Melbourne, Australia in 1981 majority will get so little in the way of communication and education that and the ability to communicate with others, it was reportedly the first organization they will never be able to complain. express every day preferences and exercise at set up by and for non-speakers anywhere least some control over his or her daily life. in the world, a milestone in the develop- Each individual, therefore, should be given the ment of group identity. Interestingly, chance, training, technology, respect and CAUS has remained an organization for Recent developments in mainstream encouragement to do so." those with significant communication communication technology, particularly disabilities associated with significant in Internet access, have allowed non- Williams used words familiar from the physical disabilities such as cerebral speech people to connect to an extent American civil rights movement: palsy and acquired brain damage. While which has not been possible previously. there is nothing in the rules excluding There is now an international commu- "December 15, 1991, will mark the bicenten- people with diagnoses such as autism or nity of articulate, active non-speakers nial of the ratification of the Bill of Rights, and Down Syndrome, the people most likely who interact through ACOLUG, the its First Amendment guarantee of free speech. to use facilitated communication, this Augmentative Communication On-Line In the nearly two hundred years since the population has shown no interest in Users Group. While every non-speech First Amendment's adoption, freedom of joining CAUS, possibly because informa- person certainly does not have access to expression has gone on to be recognized not tion about CAUS has not reached them. the Internet, more augmentative and only as a fundamental right but a prerequisite The 1995 CAUS conference in assistive communication (AAC) users are to the full enjoyment of all other civil and Melbourne was also a landmark the already connecting through ACOLUG human rights. However, for far too many first national than have ever been able to meet Americans, freedom of expression remains an conference in Australia and possibly the together, and they are sharing informa- unrequited right at best: an American ideal world to be held by communication aid tion and discussing advocacy issues which has yet to be fully realized." users rather than about or for communi- around the world. This is a real oppor- cation aid users. tunity for group formation, but one He sought to build an organizational which as yet has not been taken up by base for communication rights by Speech disabilities associated with FC users. mobilizing "persons with significant significant physical disabilities, in speech disabilities to work in close particular cerebral palsy, place great The first moves to establish a right to alliance with our families, friends, and barriers in the path of political organiza- communicate started in the late eighties. all other supporters of the First Amend- tion. Nonetheless, while the history of In the United States, AAC user Bob communication intervention with this group is very short (scarcely three 144 Continued on page 11 PAGE 10 TASK Newsletter, July/August 1999 THE RIGHT TO COMMUNICATE

Talking Politics: EMPOWERING may be the wave of the future. She those who don't know them -- politi- COMMUNICATION AID USERS uses e-mail to communicate with other cians, bureaucrats, the general public Continued from page 10 people with autism and writes that but from those who do their teachers, Using Chavez as a model, I must nurses, carers and parents those who organize autistic people who are able to believe they know what's best for them. ment throughout the nation to realize communicate, to advocate for our free expression as a real right at long human rights, and bring abusive situa- Unless we can establish an over-riding last." tions to the public light..." She is realistic right to communicate, encompassing the in her recognition "that people will not right to accurate diagnosis and early Anne McDonald gave a presentation at make changes in the condition of the intervention, the provision of the 1992 TASH disability conference in disabled only because it is the right thing communication aids as a matter of right, San Francisco entitled, The Right to to do" but asserts that "advocates can and access not just to therapy but to Communicate, in which she proposed fight a world indifferent to our needs." mainstream education, and ultimately to the establishment of "a right to commu- Rubin, who was once assessed as having employment, we will find ourselves nicate in formal situations such as an IQ of 24, recently won a major reaching a dead end. A lucky few will courts, hospitals and schools" because university scholarship in open competi- get the communication aids and educa- "without such legally enforceable rights, tion and received a letter of congratula- tion necessary to achieve their potential, people without speech will be at the tion from President Bill Clinton. Not a larger group will get limited vocabulary mercy of decision-makers who can only her words but also her achieve- communication aids and limited educa- arbitrarily refuse to allow communica- ments are agents for change. tion enough to complain but not tion." Her words formed the basis of a enough to succeed and the majority resolution passed by TASH in 1993 and Twenty-five years ago Bob Williams will get so little in the way of communi- widely-promulgated in the U.S. (but (former U.S. Commissioner for the cation and education that they will never virtually unknown in Australia). Administration on Developmental be able to protest. Disabilities and the first non-speaking person in the world to head a govern- NEW VOICES ment department), Rick Creech and As successful lobbying and networking, other successful AAC users and advo- Reprinted with permission of especially for non-speakers, require cates were the same age as Rubin is now Facilitated Communication (FC) academic skills if not formal qualifica- They blazed a trail which many other Digest, Vol. 6, No. 3 (1998). FC tions, one would expect activism to people with significant communication Digest is a publication of the follow education. Sue Rubin -- a disabilities have followed. Sue Rubin, Facilitated Communication- Lightwriter (an augmentative communi- Lucy Blackman, an FC user who has Institute, Syracuse University. cation/conversation device) user who recently graduated from a university, and started to type with facilitation, gradu- others like them may do the same for For more information on the work ated from high school in Los Angeles those who need facilitation in order to of the Facilitated Communication. and has taken Cesar Chavez, the orga- communicate. As Matthew, "a voice of Inititute, visit the FC Digest web nizer of farm workers, as her role model autism, no longer silent" wrote: "No site at disadvantaged group in man's history has improved their lot without being The article's author, Rosemary heard. Our situation is no different." Crossley, Ph.D., is director of the Recent DEAL Communication Centre, developments in We live in an age of rapid technological mainstream communication Inc. in Caulfield, Australia.. Dr. technology, particularly in Internet change and communication, an age with Crossley may be contacted by e- access, have allowed non-speech the capacity to provide the mute with mail:. or people to connect to an extent which voices and spread the news around the you may visit the Centre's web site has not been possible previously. ... world within a day. But those who are at does not have access to the Internet, on their disabilities they provide more AAC users are connecting than employment for large numbers of have ever been able to meet together, professionals, professionals trained to and they are sharing information and assess, teach or nurture people with discussing advocacy issues around the world. This is a real significant disabilities. Consequently, opportunity for group their push for rights and autonomy is formation. not only likely to meet resistance from

PAGE 11 TASHNewsletter, July/August 1999 A SELF-ADVOCATE'S PERSPECTIVE

Kegs Towards Promised Lando Free Expression BY LARRY BISSONNETTE Larry, an artist in Winooski, Vermont, uses facilitated communication to help him combine words with his art to express his thoughts and ideasLarry spent over ten years living in Vermont's Brandon Training School, a state institution for people with developmental disabilitiesSome of Larry's drawings and paintings appeared in the March 1999 TASH Newsletter

"Let me mention that its practically getting possible to create a satisfying life, interesting and meaningful nowadays, because the populanty of institutions slides towards underground storage at a pace faster than police chasing escaped prisoners

Going back in desolation where it's only me and letterless walls is not pleasant to think about. Nothing `apartheids' you like the insensitive world of institutional existence.It's politically correct to say that kind people, needing gratification for giving, started the impetus for building structurally sound, yet inhumane institutions.I made my first preparations of a meaningful dinner of meat and potatoes in pristine-like, rurally remote, planned-as-a-farm, Brandon Training School. My leap into the pond of painting happened there. Knowledge and learning of art have allowed my abilities to soar out on an airfield occupied by people who don't have disabilities. Nearly 20 years have lodged in my memory, skating on icy surfaces of slippery thoughts and fears about trials of oppression on my personal vision of life. Now work should begin on repairing damage of the past.

You lend great sums of money for places like military mansions and meeting rooms for polygamous politicians. New lots of land for masses of people with disabilities need an outpour of organized funding for learning, artistic development, and learning to play sports. One soldier fighting persecutionary attitudes is little deterrent. March with me. You'll make valiant strides of promise, creating great havoc with nearly perfect brushstrokes to inspire you."

We're looking for YOU! TASH is working to identify a list of people who have been members since the organization's inception in 1975. If you are one of these loyal members, please contact Nancy Weiss by phone (410-828-8274, ext. 101), e-mail , fax (410-828-6706) or mail (see back cover for TASH's address). 4 6 PAGE 12. TAM Newsletter, July/August 1999 BEST COPY AVAILABLE JULY/AUGUST 1999

Self Determination and The Serena Merck Participant-Driven Memorial Award Supports for Innovation and Dedication in Practice

My Voice, My Choice: Purpose of the Award: The Serena Merck Memorial My Voice,ly Choice A Manual for Self- A Manual for Self-Advocates Award is given annually to an exceptional individual who Advocates has demonstrated long-term, selfless dedication and compassion in the care or service to children who have By John Agosta, Kerri Me lda What You Need to Know mental retardation and significant mental health needs. & Cathy Terrill About Participant- Mrs. Merck recognized the critical importance of what Due to funding limitations Driven Supports quality day-to-day care provided by committed individuals and service wait lists the Human can make to children with cognitive and behavioral developmental disabilities Services disabilities. The John Merck Fund has established this field is changing. Adding Research Institute major, national award to honor her long-standing commit- to the changes are evolving ment to this field, and to call attention to the invaluable service practices, including role caring individuals play in it. commitments to self-determination, community integration and participant-driven supports. Criteria for Selection of the Awardee Prospective Whatever the changes in your state, self-advocates must awardees should meet one of the following categories: influence events. My Voice, My Choice is a must-have curriculum. Use this manual to provide self-advocates (1) Provides, as an employee or volunteer, services for with the information they need to help shape the service children who have mental retardation and significant system. Use it also with family members, board members mental health needs. (2) Demonstrates long-standing and service staff. commitment and innovative care of this population which Eight chapters include basic definitions and concepts about has positively affected their quality of life and/or life how service systems work, along with explanations of opportunities. participant-driven supports and managed care. Strategies to analyze a state system and influence change are also Submission Guidelines: Organizational entitiesmay covered. nominate prospective awardees. One nomination per Loose-leaf binder includes: (1) over 170 pages of plainly organization is permitted, although multi-service organiza- worded text and study exercises, (2) overhead slides for tions may submit one nomination from more than one each chapter (actual transparencies not included). service unit. No self-nominations are acceptable. Only List Price: curriculum & overheads - $179; curriculum organizations serving children with mental retardation and only - $120; overhead templates only - $60. significant mental health needs 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 Order Today:Call: 617-876-0426 description of the person's impact on children with mental Fax: 617-492-7401 retardation and significant mental health needs is required. At least two, but no more than five, accompanying Human Services Mail:2336 Massachusetts Ave. letters of reference from individuals well qualified to R51Research evaluate the candidate's suitability for the award should be Institute Cambridge, MA 02140 provided. Please Pay by Check, Nominations should be mailed before Purchase Order or Credit Card September 15, 1999, to: Mr. Frank Hatch, The John Merck Fund, 11 Beacon Street, Suite 1230, Boston, MA 02108 Visit our website at http://www.lisri.org/leaders/leaders.html Award: A $5,000 cash award and plaque will be presented to the awardee at the 16th Annual National Association for the Dually Diagnosed (NADD) Conference held November 10-13, 1999, in Niagara Falls, Canada. The awardee's travel expenses to the conference will be covered.

PAO/.4 V TASK Newsletter, July/August1999 JULY/AUGUST 1999

Highlights of Summer '99 Board Meeting Continued from page 3 take on this role with the Integrated Employment and Careers Committee.

Textbook of JASH Articles on Inclusion: Nancy Weiss and Doug Fisher, Chair of the Education Committee, have completed a survey of professors to identify the JASH articles related to inclusion that they assign to their students most frequently. A book that contains these articles and related Newsletter articles is being planned.

Linking Functional-Contextual Assessment to the Instructional Process ISI 00000 . 1. LRConsulting invites IS you to attend the S I* ©Maxim One-Day l 4, Training-of-Trainer 4)

I. how easy it is to 4) 4, Sessions getFREEregistration toI September 21, 1999 this year's information-packed 4, TASH Annual Conference in Chicago, Houston, TX 4 4, 4, I October 19, 2000 e I 4,"How ?" you inquire excitedly. By volunteering, ofI Providence, RI 4 course, 4, 40

a 4, 4.If you would like to attend the conference and save 4, a 4, a, on registration fees, this is the deal for you! As a 4, as volunteer, you donate a minimum of 10 hours of a,service during the conference in exchange for at, complimentary registration to attend conference I sessions during your non-volunteer periods. Visit our web site for more details: ti LWhether you've participated as a volunteer before, or www.lrconsulting.com would like to do so for the first time, ti Le_COMOULriNG your services are urgently needed as a Conference Volunteer! P.O. Box 6049-747 Katy, Texas 77491-6049 4 If you are interested, please contact 4. Priscilla Newton at1-800-482-8274,ext.102 Telephone 281-395-4978 or e-mail Fax 281-392-8379 4, Come to the TASH TECH session 1-5 Functional-Contextual Assessment & Portfolio Design 1 4 8 PAGE 14 TAR/ Newsletter, July/August 1999 STAFF CHANGES AT TASH So long toourdear friend and colleague, Marcie Roth!

As s Marcie prepares to assume new challenges that will take her away .L.from us on a daily basis, we take comfort in the fact that she will not only remain a staunch advocate and activist for disability rights in her new position with another national disability organization, but that she will remain a friend to, and an active member of, TASH. We asked Marcie to share a few thoughts as she prepares to embark on the next phase of her 20+ year journey in the disability movement.

On August 6, 1999, I will leave my position as TASH's Director of Governmental Affairs and Public Policy to assume the position of Director of Advocacy and Public Policy for the National Council on Independent Living (NCIL). The decision to leave my position was very difficult. I will not really be leaving TASH though, as I intend to remain an active member of the organization I first joined in 1983. In fact, I have already accepted responsibility for chairing the governmental affairs strand at the 1999 TASH Conference Marcie enthusiastically helps to put the 104th and would welcome the opportunity to run for the TASH Board in the future. Congress to eternal rest at the 1996 TASH Annual Conference in New Orleans. Fortunately, my work with NCIL will continue to be relevant to the members of TASH, and I intend to do all I can to further the growing partnership between TASH and NCIL For those of you who are unfamiliar with NCIL, it is the national association that represents most of the 500+ Independent Living Centers and 55 Statewide Independent Living Councils across the country. In my work with NCIL, I will spend a great deal of my time on Capitol Hill, and will be very active in the public policy issues that have an impact on people with disabilities. Rest assured that the mission of both organizations is so much in alignment, that my work for NCIL will likely have a positive impact on the membership of TASH.

I'm pleased that Dan Dotson will be staffing TASH's governmental affairs and public policy office in an acting capacity. For those of you who don't know Dan (our current webmoter, office computer guru and winner of the quickest wit in the office award on a daily basis), I expect that you will discover that, in addition to his web management shills, Dan is a strong advocate for sound disability policy. Dan is one of those community leaders who has his finger very firmly planted on the pulse of the policy makers both in Washington and in the states. As the parent of a child with a disability, Dan brings first-hand, front-line knowledge to the public policy aspects of TASH's work. Marcie with members of the successful collaboration that became the IDEA Working Group. I will miss the daily interaction with my dear friends, the incredible staff of TASH. I will also miss the connections with members of TASH with whom I have had the pleasure to work over the past four years.I look forward to being at the 1999 TASH Conference in Chicago with my fellow members of TASH.

AR- ftiria. rat 11 4. . I 1.11.1,,d'1,104

f Marcie effectively engages in one of the activities L-R: Priscilla, Rose, Denise and Marcie share for which she has become well -known in the L-R Marcie with Lois Curtis, Linda Anthony, movement -- advocacy in action! Here, she is seen their first experience working together on a and Elaine Wilson at a Supreme Court demonstrating at the White House with Maryland TASH annual conference (San Francisco, 1995). demonstration.Lois and Elaine are the named ADAPT activist Gayle Hafner. 149 plaintiffs in the original Olmstead lawsuit. BEST COPY AVAILABLE PAGE 15 TAM Newsletter, July/August 1999 RESPONSIBILITY FOR ONE'S OWN WORDS

Helen Keller is probably the most These are heady words to describe a universally recognized person NIOXEM EXA MEM=--,..-- nine-year-old child, even one of Keller's with disabilities of the 20th 111111.1...11.1111i16.1....1411.1111.2111 remarkable accomplishments. Although century (Others such as Franklin Keller and Sullivan were developing a Roosevelt were equally well-known, but wide circle of influential friends among Keller is remembered primarily for her the rich and famous of Boston, resent- accomplishments which are disability- ment was growing over the preferential related.) Those of us who have grown up treatment Keller received at the Perkins' in the last half of this century have only School. Morever, suspicions were known Keller as a figure of veneration. growing of how real Keller's accomplish- We know her primarily through popular- ments were, since no teacher of deaf- ized versions of her life such as the play blind students had ever showed the "The Miracle Worker," or through her same success that Annie Sullivan had autobiographical works such as The Story seen in her brief time with Helen. of My Life (Keller, 1961 [1902]) and The World I Live In (Keller, 1908). Most of us The "Frost King" Incident have come away with the image of a In November, 1891, Helen sent Anagnos more-than-human person living with the a birthday gift: "The Frost King," a fairy blessed support of an equally superhu- tale she had written for him on her man mentor, Annie Sullivan Macy. braille slate. Anagnos was delighted with Keller was literally world-famous. As the story, and reprinted it in The Mentor; There is little wisdom, however, to be early as October, 1888, she was writing the Perkins' School's alumni magazine. It learned from the stories of superheroes. letters to Michael Anagnos, the director was soon reprinted to great acclaim in a It is from observing the struggles, losses of the Perkins' School for the Blind. weekly publication of the Virginia and compromises in both Keller and Institution for the Education of the Deaf Sullivan's lives that we are likely to find Anagnos, the man responsible for and Dumb and Blind; however, the parallels to the everyday experiences of connecting Annie Sullivan with the editors of that journal were soon in- ourselves and our friends. Dorothy Keller family and an eager promoter of formed that Helen's story was remarkably Herrmann's recent biography of Keller, the interests of the Perkins' School, similar to a story published in a book of Helen Keller: A Life (Herrmann, 1998) where Sullivan had been both a student fairy tales by Margaret T. Canby. creates a much more complete picture of and a teacher trainee, was effusive in his Anagnos looked into the situation, and the costs of Keller's celebrity and iconic description of Helen Keller in the discovered that, during the previous status, and of the tensions present in her Perkins' School's 1888 annual report, year, when Helen had been visiting at a life-long relationship with the woman published little more than a year after friend's home, she had probably been whom she always referred to as Teacher. she began to communicate: read the story in Annie Sullivan's In this article, I will discuss two impor- absence. When he questioned Helen tant themes from Helen Keller's life in ...as if impelled by a resistless instinctive force she snatched the hey of the treasury of the English terms of their implications for those of language from the fingers of her teacher, unlocked us who are also part of a community of its doors with vehemence, and began to feast upon people engaged in the enterprise of its contents with inexpressible delight. As soon as finding their voices in the world. a slight crevice was opened in the outer wall of their twofold imprisonment, her mental faculties Many people who Keller and The Perkins School emerged full-armed from their living tomb as write through the use Helen Keller was born in Alabama in Pallas Athene from the head of Zeus. of facilitated communica- 1880, and became deaf and then blind (Quoted in Herrmann, 1998, p.64). tion, as well as those who communicate in other following an illness when she was 19 atypical ways, often find months old. Annie Sullivan came to In subsequent years, Anagnos wrote at themselves in situations Alabama to work as Helen's teacher in length of Keller in the school's annual where their authorship is March, 1887. Scarcely a month later, on report, with each report more glowing doubted, or in school April 5, 1887, came the well-known and, it must be said, more exaggerated settings where the extent than the last 146 pages were devoted of their contribution to a moment at the water-pump, where Helen roject in which they took first associated the objects she experi- to her in the 1889 annual report: part is questioned. enced with the words being spelled into her hand. Within the next year, Helen ...She is the queen of precocious and brilliant began keeping a journal, and was children, Emersonian in temper, most exquisitely studying the poetry of Longfellow, organized, with intellectual sight of unsurpassed sharpness and infinite reach... (Quoted in Whittier, and Oliver Wendell Holmes. By Herrmann, 1998, p.75). the time she was ten years old, Helen 150 Continued on page 17 PAGE 16 TASKNewsletter, July/August 1999 RESPONSIBILITY FOR ONE'S OWN WORDS

Learging from, Helm, Keller my own. For a long time, when I wrote a letter, and ill feelings even to my mother, I was seized with a sudden Continued from page 16 directed toward feeling of terror, and I would spell the sentences Annie Sullivan by over and over to make sure that I had not read other teachers at through an interpreter, however, she told them in a book. Had it not been for the persistent the Perkins' him that when she had written "The encouragement of Miss Sullivan, I think I should Frost King," she believed it to be an have given up trying to write altogether School. Sullivan original story. Ten years later, in The Story(Keller, 1961, p.68). was not a "team of My Life, Keller would write: player"; she was a The mystery was eventually "solved" proud woman ...how could it possibly have happened? I racked when it was determined that Keller had who claimed sole my brain until I was weary to recall anything very likely been read Canby's book more responsibility for about the frost that I had read before I wrote "The than two years before she wrote the story the breakthroughs Frost King;" but I could remember nothing, except down, during a brief period when Annie she had achieved the common reference to Jack Frost, and a poem Sullivan was away recuperating from an with Helen Keller, to the annoyance of for children, "The Freaks of the Frost," and I knew illness. teachers and administrators at the I had not used that in my composition. Perkins' School. This isolation of both (Keller, 1961, p. 65.) The events surrounding this episode left Keller and Sullivan from the broader a long-lasting mark on Keller. She wrote school community may also have Anagnos at first believed Keller had in her autobiography that, a year later, contributed to the vehemence of the made an innocent mistake. Some months investigation directed against them both. later, however, in response to an accusa- ...I was still excessively scrupulous about tion by one of the Perkins' teachers that everything I wrote. The thought that what I wrote Helen and Annie's Life-long Helen had told her the story had been might not be absolutely my own tormented me. No Interdependence read to her very recently by Annie one knew of these fears except my teacher. A Annie Sullivan came to work with the strange sensitiveness prevented me from referring Sullivan, Anagnos decided to convene a Keller family in Alabama in 1887. She "court of investigation." The court was to "The Frost King"; and often when an idea flashed out in the course of conversation I would and Helen were almost constant com- composed of eight school officials, four panions until Sullivan's death in 1936. of whom were blind, and Anagnos. spell softly to her "I am not sure it is mine." At other times, in the midst of a paragraph I was Their close connection continued Keller described the circumstances: with writing, I said to myself, "Suppose it should be through the entire duration of Sullivan's Annie Sullivan out of the room, Keller found that all this was written by someone long marriage to, and separation from, John was ago!" An impish fear clutched my hand, so that I Macy, a socialist author and political could not write any more that day. And even now activist. It survived deep differences in ...questioned and cross-questioned with what (19031 I sometimes feel the same uneasiness and personality between Keller's even- seemed to me a determination on the part of my disquietude (Keller, 1961, p.71). judges to force me to acknowledge that I remem- tempered nature and Sullivan's irascibil- bered having had "The Frost Fairies" read to me. I Why was this young girl subjected to ity and mercurial mood swings. Keller felt in every question the doubt and suspicion that such an inquisition? Was she the only became an active participant in both the was in their minds, and I felt, too, that a loved young student at the Perkins' School to Swedenborgian church and radical friend was looking at me reproachfully, although I politics, both of which Sullivan viewed ever produce writing which closely could not have put all this into words.... As I lay in with distaste. bed that night, I wept as I hope few children have copied someone else's work, claiming it for her own? Very likely she was not; any wept. I felt so cold, I imagined I should die before During this time, Keller remained a well- teacher knows such an event is common morning, and the thought comforted me. I think if known public figure; she was a major this sorrow had come to me when I was older, it in children her age. However, she was spokesperson for the American Founda- would have broken my spirit beyond repairing the only student described in the tion for the Blind, and the subject of a (Keller, 1961, p.66). Perkins' School's reports as the "personi- fication of goodness and happiness" 1918 movie based on her life, Deliver- ance. At the time, Helen was 12 years old. The (Herrmann, 1998, p. 75). Clearly, the support of those who could be forgiving energy which had been used to celebrate of a child's confusion about the nature ofand lionize her far beyond her actual Undoubtedly, Keller lived a life of widely plagiarism was of little avail. accomplishments was quickly turned varied experience, pursuing her own against her when she did not fully live interests beyond those of her teacher. Miss Canby herself wrote to me kindly, Some day up to those unrealistic expectations, However, her connection with Sullivan you will write a great story out of your own head, expectations which were neither hers remained the central "fact" of her life. that will be a comfort and help to many' But nor those of her teacher. This joining of lives seemed in many this kind prophecy has never been fulfilled. I have ways to be tremendously fulfilling for never played with words again for the mere both of them. It is instructive, however, pleasure of the game. Indeed, I have ever since According to Herrmann, Keller may also been tortured by the fear that what I write is not have been a secondary victim of jealousy Continued on page 18 BESTCOPY AVAILABLE PAGE 171 51TASH Newsletter, July/August 1999 RESPONSIBILITY FOR ONE'S OWN WORDS

Learning from Helen, Keller Keller's life and those of anyone growing this incident, have been required to up with a disability a century later must assume responsibility for that which she Continued from page 17 not be overlooked. However, there are wrote. Taking responsibility for one's instructive, sometimes disturbing words is a skill learned so early by most to read of the course of Keller's life resonances between Keller's life and thosepeople that we sometimes give it little following Annie Sullivan's death. of people today who rely on some level ofthought, but it is a learned skill. Being support for their communication. able to say whether something actually Polly Thompson was part of their shared happened to me or whether I imagined household since 1914. However, she 1. Responsibility for one's words. Many it; saying whether I wrote something became Helen's trusted companion only people who write through the use of myself, wrote it with another's help, or by default, as, during the 1930's, Annie facilitated communication, as well as heard it elsewhere; and being clear Sullivan's health and remaining vision those who communicate in other atypicalwhether I am reporting my own experi- declined. After Sullivan's death, Polly ways, often find themselves in situations ences, thoughts and desires, or those I Thompson assumed the role of Keller's where their authorship is doubted, or, in think my listener wants or expects to constant companion until she, too, died school settings, where the extent of their hear all of these forms of responsible in 1960. However, whereas Annie contribution to a project in which they communication are established over time. Sullivan had usually allowed Keller to took part is questioned. The lessons may be learned though take the lead in determining the course observation and conversation, or by trial of their shared existence, Thompson The scrutiny under which their words and error; they are sometimes learned tended to be far more controlling. And come may be related to the novel means through punishment and tears. But to whereas the habit of relying on a single by which the communication takes place,truly learn these lessons, one needs an person as her primary connection with or to the presence of support people. element which Keller lacked: multiple the wider world had served Keller well However, it may also be related to the communication partners. for most of her life, it placed her in a cognitive dissonance experienced by position of great vulnerability when people in authority whose categories of Sullivan was a constant in Keller's life, Sullivan was no longer there. people do not yet include "somebody and could always be relied upon to who (looks/acts/grew up) like that and coach and correct Keller in grammar, By the mid-1950s it had become obvious to their writes like this." One example of this is polite address, accuracy of fact, and so friends that Polly's behavior toward Helen was "bordering on madness." For years it had been the African-American, Phyllis Wheatley, on. I would argue, however, that Polly who dressed Helen, a long and tedious job whose book of poetry published in Sullivan's consistent presence prevented because Polly was such a perfectionist about Boston in the 1770's was widely seen as a Keller from learning to take responsibil- Helen's public image. Lately, Polly had become hoax by people who could not conceive ity for her own words. even more fanatical about Helen's appearance. of a former slave writing classical poetry Because she insisted that Helen look her best, even (Shevin, 1993). Keller represents anotherIs this an inevitable occurrence in the with her closest friends, it was now a burden for such example, and many individuals lives of people who require support or them to have company. Spur-of-the-moment within the community of facilitated mediation for their communication? visitors, whom Helen might have enjoyed seeing, communicators have found themselves Probably not Keller herself clearly were told that Polly and Helen could not see them. As a result Helen was even more isolated... What under similar scrutiny. mastered such responsibility later in her deeply disturbed members of their intimate circle, life, though not before she had been however, was that even though Nella, Katherine Another side of this issue, however, can scarred by the effects of its early absence. Cornell, Nancy Hamilton and Lenore Smith all be seen in Keller's acknowledged ongoingIn hindsight, we can speculate on knew the manual finger language, Polly would not confusion over the "Frost King" story. At approaches which might have helped let them spell to Helen when anyone else was the time of the story's wide Keller gain such mastery early on; early present. Still a prisoner in her old age, Helen was dissemination, Keller was eleven years attention to these issues, and explicit cut off from contact with anyone but her senile, old; she had been a part of the broad instruction in the rules of discourse possessive companion (Herrmann, 1998, p. community of communicators for less appropriate to someone in the public eye 312). than four years, and her access to that both might have helped. Most important, community had been mediated almost however, would have been both ongoing Lessons from Keller's Life exclusively by a single person, Annie contact with multiple support persons, As we search accounts of Keller's Sullivan. Since Sullivan had been Keller's conversational and instructional part- experiences for guidance in negotiating near-constant companion throughout ners, and practice in the communication relationships among facilitated commu- that period, she was presumed to be in a of accurate information to and among nication users, their facilitators and position to easily confirm whether Keller multiple communication partners. other supporters, and the broader had ever seen the book from which "The "Message-passing" is not just a tester's community, it is possible to err in both Frost King" was apparently plagiarized. tool; it is also a skill thats use is a mark the direction of over- and under- Under these circumstances, we can guess identification. Certainly the major that Keller may never, until the time of differences between the circumstances of Continued on page 19 PAGE 18 1J TAW!Newsletter, July/August 1999 RESPONSIBILITY FOR ONE'S OWN WORDS

Leariiiit fromi. Helm Keller only was Sullivan Helen's only teacher, who oversee them to help create more Continued from page 18 Helen Keller was Ann's only student. expansive, rather than symbiotic, Each defined themselves in relation to communicative relationships. Continu- the other. Sullivan's marriage was ally recruiting novice facilitators into a of a responsible citizen of the commu- followed by separation after a few years; person's life is far preferable to a reliance nity of discourse. Keller, though once caught up in a on a stagnant pool of limited resources. tempestuous romance which nearly led When new facilitators are added to a 2. The downside of interdependence. Was to an elopement, apparently turned away foundation of already existing facilitator Keller the beneficiary or the victim of from that moment in her life with few support, most facilitated communicators her lifelong relationship with Annie regrets. Both women chose the relation- come to welcome, with confidence, the Sullivan? Nobody reviewing Keller's long ship, but in a real sense, Sullivan can be challenges presented while breaking in list of accomplishments and accolades, said to have been responsible for it. It was new staff. And for facilitators, the famous friends and unique experiences at least theoretically within her power to partnership with either newer or more could doubt that Sullivan devoted herselfexpand Keller's access to a wider range ofexperienced facilitators, other communi- wholeheartedly to opening doors for her readers, signers and teachers; to become cation partners and allies is a significant student and intimate companion, or that a transparent conduit, a "non-player," in part of keeping our skills honed, our Keller's interactions with others; and to direction clear and our efforts sustain- systematically welcome interactions in able. Individual facilitators can take the ...Those of us who are siipporters ancfallieS of FC Keller's life in which she did not partici- initiative in expanding the circle; the Users can play an important role in helping our friends come into possession.of their power and full pate, rather than viewing such events as effort is helped immeasurably when it :citizenship in our community. The.most powerful dangerous moments to be avoided. becomes a priority of those who train and often the most complicated and painful facilitators, for administrators who ones --by which we can support movement in this Although the habits of both women provide access to enriched staffing direction, are those acts by which,"a piece at a tiine, we become less and lessindispensable. created a stable life for both Keller and resources, and for allies involved in Sullivan during Sullivan's lifetime, Annie connecting an individual with his or her Sullivan may have already come to broader community. Keller was immeasurably enriched by the-doubt their wisdom before her death. experience. However, that unique The world will never see another Helen intertwining of two lives became the A short time before Annie died, a friend, meaning Keller. Those visible people with disabili- only way Keller would know of being in it as a compliment, had told her "Helen would be ties of our generation do not stand alone the world. She came to experience the nothing without you." "Then my life has been and unique increasingly, they are world only in partnership, and seemed wasted," Annie said (Herrmann, 1998, powerful members of a powerful com- powerless to step back from such a p.257). munity, in control of those who support partnership even when, as during her them rather than controlled by them. years with Polly Thompson, the partner- For facilitated communicators, their Those of us who are supporters and ship had become a prison. Far from facilitators, friends and allies, these allies of facilitated communication users being interdependent with, and a full observations may point toward an can play an important role in helping participant in, a community, Keller had exploration of our own habits. Each of our friends come into possession of their become interdependent with a particular us might ask ourselves: are we settling power and full citizenship in our person. As a result, her life experiences into a comfortable symbiosis with our community. The most powerful acts expanded or shrank depending on that communication partners, in which and often the most complicated and specific person's situation and inclina- communication not only coexists with painful ones by which we can support tions. friendship and intimacy, but relies on it? movement in this direction, are those If so, what steps can we take to disen- acts by which, a piece at a time, we Was this degree of exclusive interdepen- tangle these two important features of become less and less indispensable.//, dence inevitable? Although we cannot our lives? For although it is important judge the participants in this encounter for each person to have intimates with REFERENCES Herrmann, D. (1998). Helen Keller: A Life. or the times they lived in by current whom we can trustingly share our New York, Alfred A. Knopf. standards, we can draw on Keller and dreams and heartaches, it is no less Keller, H. (1961 119021) The Story of my Life. Sullivan's experiences as we reflect on important to be able to communicate New York, Dell. our own. impersonally with our physician, our Keller, H. (1908). The World I Live In. New York, Grosset and Dunlop. congressional representative, or the Shevin, M. (1993). "Editorial: Who are our One question worth exploring is this: person from whom we are ordering a Phyllis Wheatleys?" FC Digest 1(3): 1-2. who was responsible for the exclusivity pizza. in Keller and Sullivan's relationship? Reprinted with permission of Facilitated Communica- Clearly, both women sought it out It is within the power of both facilitators tion (FC) Digest, Vol. 6, No. 3 (1998). FC Digest is a through most of their lives together. Not and the family members or supervisors publication of the Facilitated Communication Institute at Syracuse University. BEST COPY AVAILABLE PAGE115 3 TASKNewsletter, July /August 1999 JULY/AUGUST 1999

8 T H ANN U A L Institute for Inclusive Education October 24-26, 1999 G St. Louis, Missouri featuring Thomas Armstrong Alan Gartner Dorothy Kerzner LipskyFreeman Hrabowski III Dave PelzerJeffrey StrullyRichard Villa Gwendolyn Webb-Johnson

V & more than 50 "how to" breakout sessions

Practical st ssroom teach e"dnd Special seminar for school leaders 'administratorsto ort tod erse Discounted rates available before October I, 1999 a include: multidriltilil Call:I 800 83568282 at-it onpinclii ion, gifted, ADM43D, LD,Ileating withvidlettie,,and more.

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Innovations Invitation for Submissions About the Series

Innovationsisa publication of the American Association on Mental Retardation that brings research to practice. Designed for busy practitioners, Innovations translates research findings into clear, usable ideas. Each issue is devoted to one topic. Recent issues have included:

Teaching Problem Solving to Students with Mental Retardation by Agran & Wehmeyer A Family-Centered Approach to People with Mental Retardation by Linda Leal Teaching Students in Inclusive Settings by MaryAnn Demchak Designing Positive Behavioral Support Plans by Bambara & Knoster

Call for Contributors

Submissions of proposals for the 2000 series are invited. Potential contributors are requested to prepare a 2-3 page proposal including a description of the topic and its importance, an outline of the content and references.If a proposal is accepted, a full manuscript will be invited for review. The deadline for the next round of review is November 1, 1999. Mail 15 copies of the proposal to Diane Browder, Editor of Innovations, Depart- ment of Counseling, Special Education and Child Development, University of North Carolina at Charlotte, 9201 University City Boulevard, Charlotte, N.C. 28223-0001. For further information: [email protected]

BEST COPYAVAILABLE PAGE211 5 4TASK Newsletter, July/August 1999 1999 BOARD ELECTION

(MO-TASH) since 1993.In 1996, he was elected President of MO-TASH and served in that capacity for one year. Additionally, he The has presented at TASH conferences on such topics as inclusive leisure and adult socializa- tion supports, and most recently on respite care as a critical family support. Jeff shares in the value system embraced by TASH and is committed to assuring that our vision for persons with disabilities is not compromised. He desires to share his expertise as a clinical social worker and advocate for family support with the Executive Board TASH membership. His view of family is a holistic one as well as strength based.

Wanda J. :171 Blanchett ELECTION Wanda is an active TASH member who has boldly undertaken controversial issues of sexuality BUILDING TASH LEADERSHIP this capacity he has had the opportunity to education, Now is the time for you to decide develop and provide guidance and technical HIV/AIDS education, who will help provide critical leadership in assistance regarding a variety of services and and issues related to TASH's social justice movement for people supports that positively contribute to the meeting the needs of with disabilities. Many important issues and quality of family life for families with a child non-heterosexual individuals with significant challenges face usyour participation as a (or children) with developmental disabilities. disabilities. For over 15 years, she has voting member of TASH counts more than Within several years after gradua- worked in community and public school ever. tion (in the early 70's) from the George settings to promote the inclusion of individu- Five of the 15 seats on the TASH Warren Brown School of Social Work at als with disabilities in all facets of life.She Executive Board will be re-seated at the Washington University in St. Louis, Jeff has worked diligently as a direct service December 1999 TASH Conference in began working in support of and in collabo- provider, teacher, and teacher educator to Chicago. The individuals who appear on this ration with families who have children with increase participation of individuals with year's slate have made significant contribu- disabilities. While employed at the St. Louis special needs in their local communities and tions in the lives of individuals with disabili- ARC, he developed a parent-to-parent to improve educational programming and ties and have demonstrated leadership in the support program for parents of newborn and outcomes for people with disabilities. disabilities movement. newly diagnosed children with developmen- Wanda's commitment to empower- Your vote is critical. Please use the tal disabilities, which was featured in Parent ing persons with significant disabilities to postage-paid, self-mailing ballot provided on Outreach magazine. He also developed determine their own destiny is informed by page 25, or clearly write "ballot" on the educational resources and training related to her work in the 1980s as a direct service envelope you use. Ballots must be received at sexuality and persons with mental retarda- provider for recently de-institutionalized the TASH office by October 15, 1999. Please tion. individuals in the state of Arkansas. Specifi- use ink and vote for five candidates. Voting Jeff is a member of the National cally, she helped to facilitate their transition for more than 5 nominees will invalidate your Association of Social Workers and is into independent living settings, employ- vote. recognized by that organization as a member ment, post-secondary education and all other of the Academy of Certified Social Workers aspects of adult life that were important to THE FOLLOWING ARE THE NOMI- (ACSW). In addition, he is credentialed in them. NEES FOR THE TASH EXECUTIVE Missouri as a licensed clinical social worker Wanda is an advocate for inclusive (LCSW). He serves on several local univer- BOARD OF DIRECTORS: education and quality educational program- sity advisory committees and is a practicum ming for students with special needs. Her instructor for the schools of social work at St. pledge to improving educational program- Louis University and Washington University. Jeff Bassin ming and outcomes of students with He is also adjunct faculty at Washington disabilities dates back to her classroom is the Director of University's George Warren Brown School of teaching experiences in the Delta region of Family Support Social Work, currently teaching a graduate Arkansas. As a practitioner, she taught Services at the level social work course on social work students with disabilities in an elementary Productive Living intervention with families who have children public school setting and served as a Board for St. Louis with developmental disabilities. County Citizens with Jeff has served on the Board of Developmental Directors of the Missouri chapter of TASH Disabilities (PLB). In Continued on page 22 1 55 PAGE 21 TASH Newsletter, July/August 1999 1999 BOARD ELECTION

1999 BOARD ELECTION disabilities, including to improved educa- the institutional bias of our long-term care system, the 75% unemployment rate among Continued from page 21 tional outcomes under the Individuals with Disabilities Education Act, as amended, and people with disabilities, and the constant Section 504 of the Rehabilitation Act of 1973. attacks on the Americans with Disabilities Act have only re-enforced my belief that we need consultant to regular classroom teachers long to be organized at the local level. before it was considered "best practice." She Kathy is co-author of CLE's Educational If we are going to have the promises that were made in provided technical assistance to general Rights of Students with Disabilities: A Primer education teachers that enabled them to meet for Advocates and numerous articles, most Washington D.C. become a reality in our lives and the lives of our children, we must take the needs of their students with disabilities recently "Including Students with Disabilities action to make local officials 'do the right within the general education curriculum. in Standards-Based Education Reform" Although Wanda found her role as a practi- (1998). thing.' We must build the power from the tioner extremely rewarding, her desire to grassroots up. People with disabilities, family have a more direct impact on improving Kathy has been a TASH Board member since members and advocates must make the educational programming and outcomes of 1996 and is a member of the TASH Newsletter commitment, focus our anger and demand students with special needs led her into Advisory Subcommittee. change. TASH can assist in harnessing this teacher education and research. 'People Power.' The TASH board can guide Wanda is currently an Assistant and influence direction, but ultimately if we Professor in the Department of Exceptional Bob Kafka kaattg don't act as a powerful community, all the Education at the University of Wisconsin- Bob is a National disability laws and all the disability legal Milwaukee where she is involved in teacher Organizer of actions will not get the social change we seek. preparation and research. Her research ADAPT, and Co- I've been involved in the disability rights focuses on issues of sexuality, urban teacher Director of the battle for 25 years. My enthusiasm increases preparation, and the role of race, class and Institute for when new people join the fight. Ultimately gender in special education. Additionally, she Disability Access those of us who have been involved with has published several articles in special in Austin, Texas. education journals and made a number of disability rights for many years will go to the ADAPT/Institute 'disability rights graveyard' and our move- presentations at TASH and other professional for Disability ment will need new blood to carry the flags of conferences. She is currently co-chairing the Access does grassroots training and organiz- independence and interdependence into the sexuality strand for the 1999 TASH Confer- ing to develop new activists in the disability 21st Century." ence. community. Bob has been active in National Wanda is interested in serving on ADAPT since 1984, and started ADAPT of the Executive Board for three reasons: she Texas with Stephanie Thomas. Ming-Gon would like to utilize her practical and There have been a number of professional experience to further the mission "firsts" throughout Bob's life and career. He John Li an of TASH into the next century; she wants to began his work in the disability field with the I feel extremely ensure that TASH continues to be viewed as a local Coalition for Barrier Free Living in honored to be leading advocacy organization that is Houston, which became one of the first nominated for this committed to diversity in all of its many Independent Living Centers in the United year's election of forms; and she would like to work within the States (Houston Center of Independent new board mem- framework provided by TASH to challenge Living). Bob was the first President of the bers! I became a attitudes, institutions and policies that Board of Directors of the Houston Center of TASH member in prevent individuals with significant disabili- Independent Living. the 1970s and was a ties from expressing themselves and achiev- Bob helped start the Coalition of member of the Texas-TASH while I was still a ing their goals. Texans with Disabilities, which was one of student. Early in the 1980s, I was encouraged the first cross-disability consumer run state by the TASH Board to join the effort of coalitions. He later became a board member enhancing programs and activities relating to Kathy Bondy of the American Coalition of Citizens with cultural and linguistic diversity in TASH. I Kathy, co-director of Disabilities (ACCD). This national cross- will always treasure the opportunities I have the Center for Law disability consumer run coalition was had to serve as the chair of the Asian/Pacific and Education, has instrumental in getting the 504 regulations Subcommittee (1984-1994), the chair of an extensive promulgated in the late 1970's. TASH Committee on Multicultural and background in "There are two statements hanging International Issues (1989-1991), a member education law based above my desk that sum up why I want to be of the Community Living Committee (1987 - on providing legal a board member of TASH - `Do Something! present), a member of the Elections Commit- support and Even If It's Wrong!' and 'Don't Mourn tee (1990-1991), a reviewer for the TASH technical assistance ...Organize!'I fervently believe in People Conference (1989-present), and an ex-officio to attorneys and Power. Legislation is great. Legal action can member of the TASH Board (1990-1991 and advocates representing low-income children be effective. However, our experience with 1998-present).I have also actively partici- and youth. An attorney with CLE for more how IDEA has been implemented at the local pated in state chapter (Illinois-TASH) than 20 years, Kathy has, in particular, played level, the lack of enforcement of Section 504 activities. I was a board member (1990-1993 a significant role through legislation, policy of the Rehabilitation Act, HUD's ignoring and 1999-present), newsletter editor development and litigation in implementing violations of the Fair Housing Amendments, and enforcing the rights of students with Continued on page 23 PAGE 2215 6TASHNewsletter,July/August 1999 1999 BOARD ELECTION

1999 BOARD ELECTION been involved in supporting other people to state-wide group working on closing institu- Continued from page 22 help them make decisions in their lives. tions. On the national level, Liz was the vice Some boards and committees that I president of the national organization, Self- have been involved with are: Self-Advocates Advocates Becoming Empowered (SABE) Becoming Empowered, Illinois Developmen- from 1993 to 1996. Liz is also the co-chair of tal Disabilities Planning Council, People First the National Advisory Group for Justice. This (1991-1993), and the chair of the Volunteer of Illinois, Community Support Services, organization's mission is "to prevent discrimi- Committee at the IL-TASH Conference Capabilities Unlimited, Inc., The Ray Graham nation against people with developmental (1999- present). Association, The Research and Training disabilities in the criminal justice system, The major reason I am a loyal Center on Aging with Mental Retardation whether accused or victims of crimes, and to member of TASH is because I believe in Advisory Board, National Down Syndrome educate criminal justice professionals and advocacy and justice for all individuals in an Society Legislative Advisory Committee, people with developmental disabilities about inclusive community. Being a faculty National Center on Self- Determination, one another." member in teacher education at Illinois State Committee for the Year 2000 International Liz's work on behalf of people with University, my commitment and effort to Self- Determination Conference, the Legisla- disabilities earned her the Elizabeth Bogg serve on the TASH Board will include sharing tive and Social Issues Committee and the Award for Young Leaders awarded by the of my 20 plus years of TASH experiences, Self-Advocacy Ad Hoc Committee for the President's Committee on Mental Retardation teamwork, and advancement of policies and American Association on Mental Retardation. in 1998. Liz is a long-time member of TASH. services for under-represented persons, as I am also the Chairperson for the national She has been a Board member since 1996 and well as promising practices in the school and organization Self-Advocates Becoming is Secretary of TASH Executive Committee community as we step into the new century. Empowered, which is a national self-advocacyand Co-Chair of the TASH Membership organization run by people with disabilities. Operating Committee. I have facilitated and participated in Tia Nelis a leadership program to serve on boards and "My name is Tia committees, and have served as a member of Barbara Nelis and I believe federal grant review teams for OSERS and Ransom that all people ADD. These new roles for people with Barbara Ransom is a disabilities focus on leadership and advocacy legal advocate for should be treated as fib equals. People with skill development, and enhance programs persons with disabilities should be that can and should provide meaningful disabilities. Although respected for their services and employment opportunities. she began her career individual dreams, Since 1993 I have worked for The in computer law, talents and opinions. University of Illinois at Chicago as their Self- longtime disability They want real jobs Advocacy Specialist. Before that I worked at rights activists and with real pay and benefits or, if they can't the YMCA in their childcare programs and forpersonal friends, Nancy Zollers and Frank work in a paid position, they should be able the Western DuPage Special Recreation Laski, persuaded her that disability advocacy to do meaningful volunteer work in the Association with their day camp programs. needed her more. Barbara has practiced at the community. They want to have relationships, As a self-advocate serving on the Public Interest Law Center in Philadelphia for friendships and some people would like to TASH Board, I can help ensure the mission, nine years, using the ADA, IDEA and Section get married. They want to be able to decide goals and values of TASH. I will make sure 504 of the Rehabilitation Act as leverage for who works for them and to be able to hire that the voices of self-advocates across the the full integration of persons with disabili- and fire that person. They want to be able to country are heard and that TASH will ties. choose how much support they need and continue to listen to and include self- Barbara's interest in disability rights don't want. They want to choose the agencies advocates within the organization." and advocacy issues is also personal. She had that give them services and to make sure that two brothers with physical and learning those places are monitored. They want to disabilities. Although she was trained, have control over their own money, or be able Liz Obermayer certified and practiced as both a school teacher to choose who can help them manage their Liz is a long-time and a counselor, it was not until she entered money. leader in the self- the legal profession that she was able to I strongly believe that people can advocacy movement. understand and appreciate the successes that make their own choices and decisions. They Working through her brothers experienced in achieving their want to serve on boards and committees that the Boston Depart- own independence. are making decisions about their lives as an ment of Mental Barbara is dedicated to continuing equal member of that body, not as a token. Retardation, Liz the PILCOP tradition of advocating for They want to be involved in all the meetings actively works on systemic change so that all people are valued. that talk about the goals and dreams that they behalf of the rights As a member of the TASH Board she hopes to want in their lives. They want to be able to of self-advocates, including "providing increase TASH's involvement in the area of have a home or apartment and they want to leadership training and mentoring to people criminal justice and on the issue of including choose if they want to live alone or with served by the department." Prior to relocating persons with disabilities as a protected group someone. They want to have fun, do social to Boston, Liz was active in her local self- under the national hate crime bill. things and go on vacation. I know all these advocacy group in New Jersey, served on the thingsbecause I am a self-advocate who has Board of New Jersey TASH, and worked with a learned to advocate for myself and have Continued on page 24 157 PAGE 23 TASH Newsletter, July/August 1999 1999 BOARD ELECTION

1999 BOARD ELECTION time, we must recognize that some people have pioneered a graduate degree concentra- will need more education and more time to tion in transition planning that will begin Continued from page 23 accept this philosophy. We must give them this fall.I am working on a grant-funded the time they need to understand our views, project from the Office of Special Education but never at the cost of sacrificing our beliefs Programs, studying the best methods and Mike Remus and values. strategies to prepare teachers to support "I am honored As the premier disability organiza- student self-determination in transition to have my tion in the world, TASH has an awesome planning. This project will expand upon name responsibility to be the best it can be. In any other research in the area of self-determina- submitted as a organization, there is room for growth and tion in transition planning. Other research nominee to improvement and we must recognize that we interests include alternative assessments, the board of can only remain the best as we continue to augmentative and assistive technology, and directors for learn and grow. We must look at change and supported employment. TASH. I have embrace itnot simply for the sake of During these two years in Nevada, I been involved 14.111 change, but as an opportunity to achieve our have also been involved in a multitude of with TASH mission and become better at what we do. projects to impact the quality of community from a distance and am now ready to become We can be proud of our past. TASH supports available to individuals with much more involved. I have presented at past has envisioned an inclusive community for disabilities in Las Vegas.I serve on the board TASH conferences as an educator and parent years and we have seen this come to some of directors for two community agencies that and have been a supporter and believer in this reality through the years. We have changed provide vocational supports to adults with organization. If it were not for TASH we the world, but our job is not done until every disabilities.I work with a local elementary would not be seeing additional inclusive individual with a disability is living, learning, school as a parent/community member of practices in the community. My sons are working and playing in their own communi- their site-based management team.I am the included in the community because of what I ties with the services and supports they need. President of the local TASH chapter, TASH- learned through TASH. For this I am grateful As a strong believer in TASH and as the Southern Nevada (SN) and was a founding and am ready to help pursue more inclusive parent of two sons with disabilities who member of the Nevada chapter in develop- and best practices in schools and the commu- benefited from TASH's accomplishments and ment of the Association for Persons in nity. vision, I intend to be a part of the future for Supported Employment (APSE).I chaired I could tell you that I have an TASH. I want to help make the dream of the Nevada Community Inclusion Confer- extensive background in working with inclusive communities a reality for all of us." ence, which brought experts from around the disability issues from a national and interna- country to Nevada to help with training in tional perspective, but I want to spend my best practice procedures such as positive time giving you a sense of my beliefs and what behavior supports, natural supports, I envision for TASH. If you want more Colleen A. Thoma community bridge-building, conversion, and information regarding the above please let me "I am very honored to self-determination. know and I would love to discuss this with be considered for TASH-Southern Nevada has been you. You can reach me at The Arc of Tennes- election to the actively advocating for the use of positive see in Nashville at 615-327-0294. Executive Board of approaches and the subsequent prohibition I believe the mission of TASH is to TASH. I have been an of aversive techniques with individuals with help people realize that our strength as a active TASH member disabilities. Much of the work that I have society comes not when we exclude people forsince 1987 when I been involved in for the past year has their differences, but when we include them first started support- centered around this issue. Our efforts and embrace their diversity. We must teach ing people with resulted in the passage of Assembly Bill 280, society that what is important about people is significant disabilities which mandates the use of positive behavior their experience, their viewpoint and their to be members of their supports for people with disabilities, in all communities. I worked in a variety of humanness. Diversity brings richness to our settings, for all age groups. lives and our society and has tremendous settings, and I learned much from the people TASH-SN also scheduled the first value. Disability is a piece of that diversity I was teaching/supporting, including how to positive behavior support training institute and should be accepted, not shunned. listen, how to advocate, how to help people to provide teachers, adult support staff, and achieve their goals. It was after the birth and How do we get society to this level other advocates with information about how subsequent death of my son due to multiple of acceptance? Education is the key. It is up to begin to implement these strategies. disabilities in 1989 that I began to view my to us to show inclusive practices and demon- I plan to continue to support individuals I became a much strate the success of this approach. As we are work in a different light. with disabilities and their families more accepting of self-advocates and show by stronger advocate for individuals with through a multitude of direct and indirect disabilities and their families, probably the way we treat them that we welcome their means.I hope to advance this agenda realizing its true necessity for the first time. contribution, we will demonstrate how through even greater participation with I am beginning my work in necessary and valuable their presence among TASH as an executive board member. us is. The biggest barrier to our success in academia as an assistant professor in the Thank you for this opportunity" this area is attitude especially our own. Department of Special Education at the Anything will work with the right attitude University of Nevada, Las Vegas.I have been and we must be the shining example of how there for two years, and currently serve as the inclusive practices can succeed. At the same coordinator for the program in teaching students with cognitive disabilities.I also '4 1.58TASH PAGE 24 Newsletter, July/August 1999 1999 BOARD ELECTION TASH 1999 Election of Five (5) EXECUTIVE BOARD MEMBERS Term of Office: 1999-2002

- OFFICIAL BALLOT -

There are five positions for members of the TASH Executive Board to be filled this year. Positions will be filled via ballot by dues-paying TASH members (one each) in accordance with the Association's By-Laws. The Executive Board member-elects will begin their terms at the Annual Board Meeting held in conjunction with the 1999 TASH Conference, December 8-11 in Chicago, Illinois.

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.

Jeff Bassin Ming-Gon John Lian Barbara Ransom

Wanda Blanchett Tia Nelis Michael Remus

Kathy Boundy Liz Obermayer Colleen Thoma

Bob Kafka

For information about the candidates, please refer to pages 21-24 of this issue of the TASH Newsletter.

Mailing Instructions: Ballots can be returned using this postage-free mailer, or originals of the ballot can be sent inan envelope. If you elect to use an envelope, please be sure the word BALLOT is printed on the front.If you use an envelope, please do not place anything other than your ballot inside; your envelope will not be opened until the counting of the ballots.

VERY IMPORTANT: ONLY AN ORIGINAL BALLOT WILL BE CONSIDERED VALID. PHOTO COPIES OR FAXES WILL NOT BE ACCEPTED.

Ballots must be received at the TASH Central Office by OCTOBER 15, 1999

Mail your completed ballot to: TASH, 29 W. Susquehanna Avenue, Suite 210 Baltimore, MD 21204 Attn: Ballot .1 5 9 PAGE 2 0 TASH Newsletter, July/August 1999 adel anon( pelaiduio3 lope

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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 STATES UNITED MAIL REPLY BUSINESS THE IN MAILED IF NECESSARY POSTAGE NO 09T MARK YOUR CALENDAR

TEACHERS: 1999 Children with se I Significant Calendar of TASH Disabilities Chapter and Member- Public schools on beautiful Sponsored Conferences Oregon coast have immediate openings for innovative, collaborative teachers with licensure and education/ experience with students with significant disabilities. SEPTEMBER DECEMBER

Promising Practices Prefer skills in augmenta- F r o m Birth to ... tive/alternative communica- Working Conference on Advocacy Annual TASH International (System and Individual), Inclusive Conference tion, behavioral analysis Education and Work "TASH 2000 - Our Turn Now" including communicative September 21-23 December 8-11 Crowne Plaza, Springfield, Illinois Chicago Hilton and Towers functions, positive behavior Contact: Lynda Atherton Contact: Kelly Nelson intervention, supports for Phone: 815-758-2798 Phone: 410-828-8274, ext. 105 or inclusion, functional E-mail: [email protected] 1-800-482-8274, ext. 105 E-mail: [email protected] assessment/instruction, curricular modification, National Spinal Cord Injury Association transdisciplinary service Annual Meeting and Education Do you have an upcoming TASH chapter delivery. Conference meeting or member-sponsored conference September 26-29 that you would like to announce in the Washington, D.C. Marriott at Newsletter? Send notice of the conference Metro Center to Denise Marshall at [email protected] Contact: Denise Marshall at least 6 weeks before the event date. South Coast ESD Phone: 410-828-8274, ext. 103 We will make every effort to include the event in the meetings calendar 1350 Teakwood

OCTOBER Coos Bay, OR 97420

8th Annual St. Amant Centre Con- Attn: Sharon or ference "20th Century Trends, 21st Century Services?" Catherine October 7 and 8 (541) 269-4520 Canadlnn, Winnipeg, Manitoba Contact: Colette Choquette Phone: 204-256-4301, ext. 298 161 PAGE 27 TASH Newsletter, July/August 1999 1999 TASK ANNUAL CONFERENCE

1999 TASH KEYNOTE SPEAKERS

THURSDAY, DECEMBER 9, 1999

"TASH 2000: Our Turn Now" Diane Coleman Chicago Hilton and Towers December 8-11 Diane has served on the governing boards of national, state and local 720 South Michigan Avenue disability-related organizations and policy-related committees, has Chicago, Illinois 60605 authored numerous articles on disability-related topics and spoken 312-922-4400 or 1-800-HILTONS extensively on topics pertaining to disability rights and health care TASH Rates: $146.00 Single; $171.00 Double/Triple issues. Diane has worked as an organizer for ADAPT and is founder of Not Dead Yet, a national grassroots disability rights organization. Tentative Conference Agenda Tuesday, December 7, 1999 Kyle Glosier 8:00 PM 10:00 PM TASH Conference Registration Kyle is a middle-school student and self advocate who uses augmentative communication. Having spoken at conferences and rallies since Pre-Conference Activities he was a young child, Kyle is now an experienced national and Wednesday, December 8, 1999 international speaker. Kyle is also an active member of ADAPT. 7:30 AM 8:45 AM TASH Tech Registration 9:30 AM - 4:30 PM Club TASH Day Care/Youth Activities Jeff Moyer 9:00 AM- 4:00 PM TASH Tech Workshops Jeff is an internationally known disability advocate, songwriter, 9:00 AM - 4:00 PM TASH Development and Leadership performer, author and leader whose work on the cutting edge ofthe Training disability rights movement has spanned over 25 years. Jeff's work 2:00 PM8:00 PM TASH Conference Registration challenges, uplifts and unites communities through recognizing the 4:30 PM5:00 PM Welcome to TASH essential contributions of individuals, families and all members of the 5:00 PM - 7:00 PM Opening Reception in the TASH teams that advocate, support and educate. Exhibit Hall FRIDAY, DECEMBER 10, 1999 Thursday, December 9, 1999 7:30 AM 1:00 PM TASH Conference Registration 7:30 AM- 9:00 AM TASH Exhibit Hall Open Anne Donnellan 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities Anne is a Professor in the School of Education at the University of 8:30 AM 10:00 AM General Session Wisconsin, Madison. Her keynote address, titled "Absence of 10:15 AM- 5:30 PM Conference Sessions and Poster Evidence Not Evidence of Absence," will discuss how 19th century Presentations social biases and 20th century testing continue to condemn people 11:00 AM- 6:00 PM TASH Exhibit Hall Open with mental retardation, autism, and other disabilities to second class 5:30 PM - 7:00 PM Reception citizenship. Ann will inspire us to lead special education, rehabilitation and human services into the next millennium with creative new Friday, December 10,1999 approaches to understanding and serving people who have been 7:30 AM - 11:00 AM TASH Conference Registration labeled. 7:30 AM 10:30 AM TASH Exhibit Hall Open 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities Rosangela Berman-Bieler 8:00 AM - 10:15 AM Conference Sessions and Poster Founder of the Independent Living Movement in Brazil, Rosangela is Presentations also the founder and current president of the Inter-American Institute 10:30 AM - 12:00 PM General Session on Disability (BD). Through her work with IID, Rosangela works to 12:15 PM- 4:45 PM Conference Sessions and Poster promote cooperation for the development and empowerment of Presentations people with disabilities in the Inter-American region, as well as 1:00 PM - 7:00 PM TASH Exhibit Hall Open Spanish and Portuguese speaking countries of Europe and Africa. 5:30 PM - 7:00 PM Reception Rosangela has been a quadriplegic since an automobile accident in 6:30 PM8:00 PM TASH Open Forum and Business 1976, and uses a wheelchair. Her keynote address will focus on the Meeting concept of "inclusion" as a new paradigm for the millenium and on the importance of international cooperation regarding disability issues Saturday, December 11, 1999 worldwide. 7:30 AM - 9:00 AM TASH Conference Registration 7:30 AM 12:00 PM TASH Exhibit Hall Open 8:30 AM -1:00 PM Club TASH Day Care/Youth Activities 162 8:00 AM - 12:45 PM Conference Sessions PAGE 28 TASH Newsletter, July/August 1999 Mail form to: TASH, 29 W. Susquehanna Avenue, TASH Office Use Only TOSII Conference Suite 210, Baltimore MD 21204 or 'Cirg Fax form to: TASH, (410) 828-6706 Registration Cust Questions? Call: 1-800-482-TASH (8274) "Tent 2000: Our Turn How" Reg Email: [email protected] Flec Chicago Hilton and Towers TDD (410) 828-1306 December 8-11, 1999 This form can also be found on our website www.tash.org

Agency / Organization / School Information: (if applicable)

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Conference attendee: (Please use a separate form for each person)

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This address is home work school other Please send my confirmation via email fax mail

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WISH MEMBERSHIP: International International *Chapter I am renewing my membership now Mem. # & Chapter Only Only Individual $103 I am becoming a member now $88 $33 If you are joining with 3 or more people from the same Reduced Fee (cirde one) S60 S45 S20 agency/organization/school take $20 off each person's Self-advocate/Parent/Student applicable rate (must be in the same envelope)! Family $156 $136 $66 New And Renewing Members please select Organizational 5230 5200 S70 membership type (and add rate on other side) -, Lifetime $1000 N/A N/A

attributes (please circle all that apply) 1. Administrator/Adult Services 11. Legal Services Provider 21. Social Worker 2. Administrator/Education 12. OT/PT 22. Speech/Language Pathologist 3. Administrator/Other 13. Parent/Family Member 23. Special Education Teacher 4. Adult Service Provider/Staff 14. Personal Assistant 24. Support Specialist 5. Advocate/Friend 15. Professional/Public Policy Advocate 25. Staff Development/Trainer 6. Behavioral Specialist 16. Professor /Instructor (College /University) 26. Student (College/University) 7. Case Manager 17. Psychologist List ID: 8.Early Childhood Services 18. Regular Education Teacher/Admin 27. Supported Employment 9.Educator/Teacher (K-12) 19. Related Service Provider 28.Other 10. Government Personnel 20. Self-Advocate

accessibility and additional Information Requests Sign Language Interpreter Please indicate dates and times needed:

Please list any accessibility/ ADA accommodation needs: Please note: information about accessibility at the hotel and surrounding vicinity will be available at the information desk on-site) Child Care/Youth Activities (Note: you must fill out an application in advance to register. Space is limited)

Chapter Only Membership does not qualify for reduced conference registration rates. 163 1999 WISH Conference Registration Payment information (Includes Opening Reception on 12/8/99 and Conference Activities 12/9-12/11/99) TASH International Members: 0 Individual $219 Year Student $169 NEW ?WS etet:deutiSoeinS;Si:97eS Parent (non-professional) S 49 .. Self Advocate S 49 V411" freer One Day Only 0 Thurs 0 Fri 0 Sat $119 selectioniwitivio TASH Chapter only or Non-Members: registration.... Individual $329

Student $249

Parent (non-professional) $ 79

Self Advocate S 79 One Day Only Mars 0 Fri 0 Sat $169 Enter Applicable Registration4 $

Discounts: (only one discount can be applied)

Earlybird Registrations Subtract S20 (Must be sent with payment by September 24th)

Groups of 5 or more registering for full conference Subtract $20 per registrant (all registrations must be received in the some envelope)

0 A direct support staff person registering with a self-advocate Subtract $50 from the staff person's registration

0 Two or more members of the same school team registering Subtract $50 per registrant together (ie: a special educator and a regular educator, or a regular educator and a paraeducator) Enter Applicable Discount Here4 $ ( )

After November 12, 1999 registrations will be on-site only and a S40.00 late fee must be added. To ensure Enter that your registration process goes smoothly and to save money we encourage you to register early. If you register Late on-site you must bring this form and payment or authorized PO with you at time of registration. Fee Here --, $

Enter Total Conference Registration From Above Boxes Here 4 $

New This Year I would like to order the 1999 TASH Conference Yearbook

(available in June, 2000) Order with your registration and save $10.00$35708- $25.00 ) S

TASH Tech Pre-conference Workshops (Wednesday, December 8, 1999)

1st Choice: TASH Tech Session # PLEASE BE SURE TO SPECIFY YOUR CHOICES! 2nd Choice: TASH Tech Session # (see page # 4)

0 TASH Member $65.00

Non-Member 585.00

Self Advocate / Parent (Non-Professional) $40.00 Enter TASH Tech Fee Here i S

0 TASH/NADD Symposium 585.00 Enter Symposium Fee Here -, S

TASH Membership Dues from Page 5 $ Less $20.00 for three or more joining as TASH Members from same Org/Agency/School $ ( ) Enter Total Membership Cost Here , $

Additional donation to support a self advocate to attend the conference

SS S10 S20 0 Other S

(add all applicable costs) TOTAL AMOUNT ENCLOSED: S

Payment Terms: Registration will not be accepted without payment by check, official purchase order, or credit card authorization. Please note that payment must be inU.S. Funds only. A $25.00 processing fee will be added to all cancellations, or for purchase orders not paid prior to the conference. No refunds will be given for cancellations after November 12, 1999.S25.00 fee for returned checks or unauthorized charges.

Check Enclosed 0 Purchase Order / State Voucher no.

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Card Number: Exp. Date: 1 6igiture: BEST COPY AVAILABLE TASK TECH and Preconference ectivities TASH Preconference Workshops and the symposium (co-sponsored by NADD) are full day, in-depth sessions held on Wednesday, December 8, 1999. Registration is in addition to the full conference. Be sure to arrive early to participate in one of these dynamic and informative sessions and join us for the opening conference reception from 5:00-7:00 pm!

T-1Expanding & Deepening Relationships between grade levels and particular students that the participants IDEA '97 which are: a free and appropriate education, Community Members & Adults with may have in mind. appropriate evaluation, IEP development, least restric- Developmental Disabilities tive environment, parent and student rightsin Angela Novak-Amado T-8Developing Augmentative Communication decision-making, due process procedures. Also Many agencies have begun working on building friend- Systems to Support Participation in General included is a special focus on new school discipline ships between adults with disabilities and community Education Classrooms policies. This workshop is designed to help parents and members. This session will be for staff who have already Rae Sonnenmeier, Michael McSheehan advocates learn what they need to know to plan an initiated bridge-building efforts to: I) share their expe- Developing an augmentative communication systemeffective program for their children and young adults riences with others, 2) find avenues for going beyond within an inclusive educational setting requires a with disabilities. barriers, and 3) discover ideas for expanding and thoughtful process to ensure that a stabilized commu- deepening existing relationships. nication system is not a prerequisite to being included. T-14 The Ethics of Touch The phases of developing such a system, including con- Dave Hingsburger T-2 Creating Field-Based Networks to Meet the sidering the features of technology, and selecting This full day workshop will explore the issue of provid- Personnel Needs of Students with Severe vocabulary to increase curricular and social participa- ing intimate care to people with developmental disabil- Disabilities and Deaf-Blindness tion in general classrooms will be presented. Thisities. It will also examine the role of front line staff and Susan Bashinski, Margy Hornback, session willinclude discussion, interactive problemtheir complex socio-therapeutic relationship with the Donna Wickham, Gwen Beegk, Lynette Lacy solving, exploration of technology, and personal stories. people they serve. Participants will discuss how these Kansas has implemented an innovative approach to pro- staff members should define their job. Are they thera- viding exemplary education to students with severe dis- T-9Including Students with Disabilities as Fully pists? Friends? Family? Is it appropriate to meet the abilities in indusive programs. The practices of this vali- Participating Members of the High School emotional/relationship needs of people with disabili- dated approach will describe an ongoing professional Community ties? What about touch? What is most appropriate? development model relying on excellent practicing teach- Carol Tashie, Mary Schuh, Jeff Stnslly Hugs? Handshakes? Both? Neither? This session will ers who consult with teacher teams around the state. Why students with disabilities should spend their high address each of these questions. Also, participants will school career with all peers and strategies for over- learn practical ways of respecting boundaries while pro- T-3 Tools for Working: SSI Work Incentives & coming obstacles that cause students to spend time viding intimate physical and emotional service. Issues Transition Age Youth away from typical peers will be discussed. What stu- ranging from appropriate ways to show affection to Sheila Fesko, John Butterworth, Vicki Brooke, dents should be learning in classes, after-school, week- how to bath and toilet someone with significant dis- Ellie Emanuel. Helena Haas, William Halloran ends, and the transition to jobs will be discussed. abilities will be addressed. Representatives from the Work Incentives Transition Network will provide participants with content materi- T-10 Organizing for Disability Rights and Inclusion al on the SSI program, the impact of working on SSI Steve Taylor, Bonnie Shoultz and Others In addition to the TASH Techs that are being held on benefits, creative use of the work incentives CO advance This TASH Tech will examine a range of grassroots Wednesday, December 8th, TASH is holding the 3rd career goals and self-determination, and the role of community organizing strategies that people with dis-Annual Chapter Leadership Development Day An schools in addressing SSI needs. abilities, family members, and advocates can use to pro- opportunity for chapter officers to share ideas, concerns mote the full participation of people with disabilities in and strategies. This day long event will feature formal T-4 Creating and Maintaining Inclusive Learning community life. Topics to be discussed include: build- presentations along with skill-building opportunities. Communities: Community, Curriculum and ing coalitions with disability and non-disability groups, Teacher Inquiry developing position statements, sponsoring publicAll current Chapter officers will receive invitations to Mary Fisher, Mara Sapon-Shevin, Lucille Zeph forums and other actions, working with the media, this exciting day of planning and collaborating. If you This interactive workshop will address the three essen- organizing petition drives and letter-writing campaigns, are interested in starting a chapter and would like to tial components of inclusive learning communities: and other non-legal and non-legislative strategies.participate in the 1999 Chapter Leadership Day on 1) community building, 2) effective current and emerg-These topics will be explored through presentations, small December 8th, call Nancy Weiss at 410-828-8274, ext. ing practicesin general education curriculum and group discussions, and exercises. Participants will also 101 or e-mail: [email protected] instruction, and 3)reflective practice and teacher receive an information packet on organizing strategies. inquiry. The presenters intend to create a community of learners that will result in an exciting and effective T-I I The Behavior-Communication Link Special Symposium learning experience helping to bridge the gap Kim Davis, Susan Dixon between research (or the ideal) and practice. Behavior is often overlooked as a legitimate means of Behavioral Supports: Individual Centered Interventions communication. This workshop will provide informa- William I. Gater, Ph.D. and Dorothy M. Griffiths, Ph.D. T-5Functional-Contextual Assessment & tion to families and individuals who support people Portfolio Design with disabilities to build an understanding of how dif- This symposium is for people supporting individuals Mary Fitzgerald Susan Catlett, Eve Cugini, ferent behaviors are communicative, to understand with developmental disabilities and mental health con- Charlene Comstock-Galagan, Sharon Lynch what their messages might be and how to begin to cerns. The presenters will describe a range of medical, This highly interactive session will explore the process interpret those messages. psychiatric, psychological, social and environmental of functional-contextual assessment asitrelates to features involved in the development and continuation evaluation procedures under IDEA 1997. The process T-12 Civil Rights, Decision Making and Guardianship: of behavioral and emotional challenges that represent emphasizes a team approach, (including parents), care- Melding TASH Values with Best Practices barriers to quality of life. Numerous case illustrations ful examination of current data and data collection Dohn Hoyle, Kathleen Harris, Joel Welber, Sally will be presented throughout to demonstrate use of strategies that yield meaningful information which Burton-Hoyle, Patricia Dudek, Mayer Shevin multimodal (bio-social-social) functional case formula- links to appropriate IEPs. Participants will also learn With the establishment of guardianship for individuals tion process in devising individual centered interven- about and interact with student portfolios designed with disabilities, their ability to make decisions about tions for these challenges. The Individual Centered by parents. their own lives has frequently been taken away. This Behavioral Interventions described in this presentation workshop will focus on a number of preferable alterna- are designed to enhance the competencies of person 1-6 Emergency Management tives to support all people at risk including individualssupported rather than merely to reduce or eliminate Gary Lavigna with the most significant decision making support emotional and behavioral challenges. When punishment is no longer used CO manage behav- needs. Discussion will include best practices in alterna- William I Gardner, Ph.D., a clinical psychologist, is on ior, people ask, "What do we do when the behavior tives to legal guardianship, some recent court decisions, the faculty of the Rehabilitation Psychology Program at occurs?" "What do we do in a crisis?" This seminar will and philosophical debate surrounding self-determina- the University of Wisconsin-Madison. Dr. Gardner provide an overview of emergency management and tion and choice making for people who are at risk of serves on the Board of Directors of NADD. He is a fre- reactive strategies that might be used as part of a com- losing their right to make their own decisions. This ses- quent presenter at national and international meetings plete support plan. sion is designed for long term advocates, family mem- and provides training and clinical consultations to pro- bers, attorneys, case management agency staff, and all grams serving person with significant mental health T-7 Whole Brain Learning: Inclusive Academics, those who believe in the principles of freedom and concerns. Dr. Gardner isthe author of numerous Music & Games self - determination. articles and books. Robin Smith, Kate Farrar This highly participatory workshop will emphasize T-13 IDEA: What Parents & Advocates Need Dorothy M. Griffiths, Ph.D. is on the faculty of Brock use of multiple intelligences to enhance academic and to Know University Ontario. Dr. Griffiths is President of the social engagement and establish a competence-oriented Dixie Jordan NADD Board of Directors. Her frequent training learning community. Participants will experienceJoin the co-director of the Families and Advocatesworkshops and consultations throughout North music, body sculpture, and kinesthetic games toPartnership for Education Program from PACER American focus on supporting persons with challeng- support academia in inclusive classrooms along with Center for a full day of training on IDEA following its ing behavioral and emotional features. Dr. Griffiths has other approaches that support "whole brain" or "brain 1997 reauthorization and newly released regulations. authored many articles and has co-authored books compatible" learning. We will discuss applications at all This workshOp is organized around[ the six principles ofaddressing challenging behaviors in persons with 3 7 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. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President 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. Jacki Anderson Patrick Schwarz Terms such as "people with mental retardation." "children with autism," and "in- Jacqueline Thousand 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

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©Para Educators: GRADUATE PROGRAMS IN Life Lines SPECIAL EDUCATION in the Classroom VANDERBILT UNIVERSITY PEABODY COLLEGE 1999-2000 This department is nationally ranked as one of Trainer-of-Trainer the leading programs in special education. Sessions Master'sdegreeprogramsinclude:Early Childhood Special Education, Behavior Build in-district resources to Disorders, LearningDisabilities, Severe ensure on-going paraeducator Disabilities, Secondary Transition, and Visual training by attending this Disabilities. The faculty are engaged in innova- 3-day workshop to become a tive research and development projects and sup- ©LifeLines trainer. port a rigorous, research oriented doctoral program. Doctoral program emphases include Behavioral Disorders and Transition, Learning Offered by Le...CONSULTING: Disabilities, Early Childhood Special Education, Visual Disabilities, and Severe Disabilities. St. Louis, MO Generous financial support packages are avail- Chicago (Skokie), IL able. Charleston, SC Applications are accepted on a continuous Orlando, FL basis. Please contact LyndaWyatt ([email protected]) Department of Portland, OR Special Education, Box 328, Peabody College of Dallas, TX Vanderbilt University, Nashville, TN 37203; (615) 322-8195 or visitthe Web siteat Scottsdale, AZ http://www.peabody.vanderbilLedu for addi- St. Paul, MN tional information.Vanderbilt University has a strong commitment to diversity and actively Providence, RI seeks applications from minorities and individuals with disabilities. Visit our web site for more details: www.lrconsulting.com L2Com5uLrimG P.O. Box 6049-747 Katy, Texas 77491-6049 Telephone 281-395-4978 Fax 281-392-8379

PAGE 2 168 TASH Newsletter, September 1999 FROM THE EXECUTIVE DIRECTOR

a new era. It is our turn now our turn for TABLE OF CONTENTS From the equity, social justice, diversity and mean- Tentative Agenda page 5 Executive ingful lives for all people with disabilities and their family members. Keynote Speakers page 5 Director Whether you are a long-time partici- BY NANCY WEISS pant or have never attended a TASH con- Hotel and Travel I have been a ference before, make plans now to be a part Information page 6 of this remarkable coming together of par- TASH member for a ents, self-advocates, professionals, research- TASH Tech and far greater number of Pre-Conference Activities page 8 ers, professors and studentsall of us tied years than I have served as a staff person to together by a shared set of values and be- 1999 In-focus Strands page 10 this wonderful organization.As a mem- liefs.There are few experiences more in- ber, each year, I would await the conference vigorating.Get charged up for the new Thursday Sessions page 13 edition of the Newsletter with anticipation. millennium with the greatest number of As soon as I received it I would dive in to sessions on the broadest range of topics that Friday Sessions page 22 see what topics were being covered, who TASH has ever offered. At last year's conference the convention Exhibit Information page 31 was speaking, and which TASH Tech I would select for that year. Welcome to this center staff were amazed at how the halls emptied out when sessions started. TASH Saturday Sessions page 32 year's Conference Edition! conference sessions are not your run-of-the- TASH Conferences are never a disap- mill "listen-to-the-expert" type sessions. Registration page 37 pointment. They are rich, engaging experi- They are spirited opportunities for mean- ences that help each of us come away with ingful interaction on the topics that are most renewed energy and excitement for the work critical to the lives of people with disabili- TASH (formerly The Association for Per- that we do in building better lives for people ties today. TASH conferences are designed sons with Severe Handicaps) is an inter- with disabilities whether we do that as to provide multiple opportunities to get to national advocacy association of people self-advocates, family members, on behalf know speakers and other participants. with disabilities, their family members, of individuals we support or as representa- Here's your opportunity. Come to Chicago tives of organizations, schools, universities other advocates and people who work to meet people from across the street and in the disability field. TASH actively pro- or government agencies. across the world who have devoted their The theme for this year's conference is motes the full inclusion and participation lives, as you have, to making the world a "TASH2000Our Turn Now".The con- of persons with disabilities in all aspects better place to be a person with a disability. ference the final disability conference of of life. To receive an information packet, See you there! contact: TASH, 29W. Susquehanna Av- this millenniumheralds the beginning of enue, Ste. 210, Baltimore, MD21204 or phone (410) 828-8274, ext. 108 or A/ I IPPA. e-mail: [email protected].

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 fAsTASH (410) 828-TASH, Ext. 101, e-mail:[email protected] Stretching the boundaries of what is possible; For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at Building communities in which no one is (410) 828-TASH, Ext. 103, e-mail:[email protected] segregated and everyone belongs; For questions about the 1999 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, e- mail:knelson @tash.org Forging new alliances that embrace diversity; For questions about membership, conference registration or exhibiting call: Rose Holsey, Director of Operations, (410) 828-TASH, Ext. 100 or [email protected] For information on governmental affairs or the TASH Website, call: Dan Dotson, Advocating for opportunities and rights; Acting Director 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, newsletter submissions or advertising, or publication sales, call: Priscilla Newton, Director of Supporting research and disseminating Marketing and Communications, at (410) 828-TASH, Ext. 102, knowledge and information; e-mail: [email protected] For information on the Journal (JASH), call: Linda Barbara, Editor-in-Chief, at Promoting inclusive education; (610) 758-3271, e-mail: LMBL @lehigh.edu 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 this form preferable. Call (410) 828 -8274 ext. 102 to request the recorded version. Requests for permission to reprint material appearing Promoting excellence in services. 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 e-mail to: [email protected]. BESTCO,PYAVMABLE PAGE 3 16 9 TASHNewsletter,September 1999 1999 ANNUAL CONFERENCE "TOSII 2000: Our Turn Now" 1999 TORII Conference Chicago Hilton and TowersDecember 8-11th Chicago is our kind of town!

ake it your town too! Plan to join us for "TASH 2000: EPPWrib:0 Our Turn Now" to be held at the Chicago Hilton and oulaind 'at the TASH Conference: , Towers. The TASH Conference is where the best of ;tin` edge sessions on issues that directly hearts and minds in the disability opeople w/ disabilities and their movement gather to provide and share cutting-edge information that trategies and information thatyou can ptit inspires advocates, parents, and P2ivqw; . professionals alike to understand, support, and creatively move forward entatieei toward inclusive lives for all. Whether Illanufat(trre-rs,..iotrii;iii-,..and suppliers you are coming from around the thamik R'exhibit hall : Viat'47.; C. . world or across the street, this is the t fectte ueneliiieginbenew§ everyone ;ar. :4-.' f;?-1, place to join over 2500 activists, who atten S the conference' TASH is Known torr'- our advocates, educators, and leaders in unconirirnitirig stance and action: the quest for full inclusion and insisting on full participation and community inclu- participation for all people with sion for all! disabilities regardless of their level of disability or need for support.

Advocacy Guardianship Issues of World Peace & Self-Advocacy Building Alliances and High School Inclusive Social Change Self-Determination Coalitions Education Leisure and Recreation Sexuality, Romance, & Communication Higher Education Life Transitions & Changes Dating Community Living Housing/Home of Your in Supports for Aging Adults Special Health Care in Creative and Performing Own Managed Care Inclusive Settings Arts IDEA Monitoring and Management Issues Special Health Care Needs Criminal Justice Enforcement Mediation Spirituality Curriculum Adaptation IDEA '97 Regulations MiCASSA/Personal Standards Based Reform Deaf Culture Impacting Legislation Assistance and Assessment Dual Sensory Impairment Inclusive Education Multicultural Issues Students Who Severely Due Process Strategies Paraprofessional Issues Challenge Schools Early Childhood Independent Living Personnel Preparation Systems Change at the Educational Reform Centers, Councils, and Positive Approaches to Local Level Employment and Careers Services Behavior Change Systems Change at the Family Issues Integrated Sports Qualitative & Quantitative Policy Level Functional Assessment for International Inclusive Research Teacher Preparation Behavior Change Education Rehabilitation Act Transition from School to Governmental Affairs Internet and Disability Related Services in Work Grassroots Organizing Issues of Death and Dying Inclusive Education Urban Education Issues

BEST COPY AVAILABLE PAGE 4 4 TASH Newsletter, September 1999 1999 ANNUAL CONFERENCE

Tentative Conference agenda 1999 TaSh Tuesday, December 7, 1999 8:00 AM10:00PM TASH Conference Registration Keynote Speakers

Wednesday, December 8, 1999 Thursday, December 9, 1999 7:30 AM 8:45 AM TASH Tech Registration Richard Villa 9:30 AM 4:30 PM Club Tash Day Care/Youth Activities Rich has been a general and special 9:00 AM 4:00 PM TASH Techs And NADD Symposium education teacher as well as an 9:00 AM 4:00 PM TASH Chapter Development administrator in one of the nation's And Leadership Training first totally inclusive school districts. 2:00 PM 8:00 PMTASH Conference Registration As the President of Bayridge Consor- 4:30 PM 5:00 PMWelcome To TASH tium, he provides training and 5:00 PM 7:00 PMOpening Reception, in the TASH Exhibit consultation in areas such as collabo- Hall rative teaming, creative solution- finding, systems change, and inclusion. Rich provides Conference Activities technical assistance to school districts, departments of Thursday, December 9, 1999 education and advocacy groups across the country and 7:30 AM 1:00 PM TASH Conference Registration around the globe. Rich says: "The future can be a terrible 7:30 AM 9:00 AM TASH Exhibit Hall Open or wonderful thing; a seed bearing two vines inclusion 8:30 AM 5:45 PM Club TASH Day Care/ Youth Activities or exclusion." Rich's keynote will explore possible futures 8:30 AM 10:00AM General Session of education and will issue a call for action. 10:15AM 5:30 PM Conference Sessions and Poster Presentations Diane Coleman 11:00 AM 6:00 PM TASH Exhibit Hall Open Diane is a person with significant 5:30 PM 7:00 PM Reception disabilities who obtained her law degree and Masters in Business Friday, December 10, 1999 Administration from the University of 7:30 AM 11:00 AM TASH Conference Registration California in 1981. She has served on 7:30 AM 10:30 AM TASH Exhibit Hall Open governing boards of numerous 8:30 AM 5:45 PM Club TASH Day Care/Youth Activities national, state, and local disability 8:00 AM 10:15 AM Conference Sessions And related organizations and policy Poster Presentations related committees, has authored numerous articles on 10:30AM 12:00 PM General Session disability-related topics and spoken extensively on topics 12:15PM 4:45 PM Conference Sessions And pertaining to disability rights and health care issues. Diane Poster Presentations has worked as an organizer for ADAPT and founded Not 1:00 PM 7:00 PM TASH Exhibit Hall Open Dead Yet, a national grassroots disability rights organiza- 5:30 PM 7:00 PM Reception tion leading the disability community's opposition to the legislation of assisted suicide and euthanasia. Her keynote Saturday, December 11,1999 will both educate and update advocates on this controver- 7:30 AM 9:00 AM TASH Conference Registration sial issue. 7:30 AM 12:00 PM TASH Exhibit Hall Open 8:30 AM 1:00 PM Club TASH Day Care/Youth Activities Kyle Glosier 8:00 AM 12:45 PM Conference Sessions Kyle is an up and coming star in the disability rights movement. This middle school student from Pennsyl- "This years TASH Conference logo (on the front cover) fea- vania is an experienced spokesperson tures one painting from a trilogy created by the staff of for people with disabilities. He has spoken at many conferences and Howard Community Services, a division of the Howard rallies since he was a young child. In Center for Human Services, in partnership with Vermont his keynote address, Kyle will share artist Suzanne LeGault. Howard Community Services, lo- his experiences as an advocate for himself and others, and his perspectives on the future of inclusive communities. cated in Burlington, Vermont, provides a comprehensive Kyle embodies the theme of this year's conference Our array of supports and services to individuals with develop- Turn Now and will continue to develop into a strong leader as he pushes for an inclusive society mental disabilities and their families."

BEST COPY AVARABLE PAGE 5 171 TASH Newsletter, September 1999 1999 ANNUAL CONFERENCE General Information .1999 Titi Sti Headquarter Hotel and Conference Location Chicago Hilton and Towers Keynote Speakers Continued 720 South Michigan Avenue Chicago, Illinois 60605 Jeff Moyer Telephone: 312-922-4400 Jeff is an internationally known disabil- Fax 312-922-5240 ity advocate, songwriter, performer, Reservations 1-800-HILTONS author, and leader whose work on the V cutting edge of the Disability Rights 1999 TASH Conference Rates Movement has spanned over 25 years. $144.00 Single His recorded albums of music, activity $169.00 Double book, musical and song programs and Current Chicago Taxes are 14.9% materials for augmentative communica- Please call early to ensure space. Rooms are held until November 22, tion aid users and teach the vital lesson that disability is a 1999. After that date reservations will be accepted based on availability. Please specify that you are calling regarding the TASH Conference. normal aspect of human diversity. Jeff's work challenges, uplifts and unites communities through recognizing the Airports essential contributions of individuals, families and all mem- O'Hare International Airport 773-686-2200 bers of the teams that advocate, support and educate. His The Chicago Hilton and Towers is located 18 miles/45-90 minutes from keynote will share the music that has documented our history the O'Hare Airport and lifts high the dignity and wholeness of all people. Mid-Way Airport 773-838-0600 The Chicago Hilton and Towers is located approx. 12 miles/20-40 Friday, December 10, 1999 minutes from the Mid-Way Airport Anne Donnellan Ground Transportation Anne is a Professor in the School of Chicago Transit Authority Education at the University of Wiscon- For information on the rapid transit trains and bus information, fares, sin, Madison. Her keynote address, or accessible routes please call 1-888-968-7282 or 312-836-7000 Not titled, "Absence of Evidence Continental Airport Express Evidence of Absence" will discuss how 312-454-7799 1-800-654-7871 nineteenth century social biases and Continental's Airport Express provides van rides from O'Hare every 5 twentieth century testing continue to minutes for $16.00 or $29.00 round trip. From Midway, the vans condemn people with mental retarda- depart every tion, autism, and other disabilities to 15-20 minutes and cost $10.50 one way and $19.00 roundtrip. For wheelchair accessible vans, please contact the service at least 24 hours second class citizenship. Never one to shrink away from in advance. confronting conventional wisdom, Anne will inspire us to Taxi services offering fully accessible minivans and/or wheelchair lead special education, rehabilitation and human services accessible cabs: into the next millennium with creative new approaches to Yellow Cab understanding and serving people who have been labeled. 312-829-4222 x2 Companies that service, sell and rent medical equipment, Rosangela Berman-Bieler including wheelchairs, scooters and beds: Rosangela is a Brazilian journalist, Metro Rehab Services Amigo Mobility publisher and disability rights advocate 708-361-7060 630-268-8670 as well as a professional meeting Kozy Cycling (Wheelchair Tire Repair) planner. Founder of the Independent 312-360-0020 Living Movement in Brazil, she is also Agencies that provide personal assistance services: the founder and current president of Help at Home Addus Health Care the Inter-American Institute on 312-461-9000 312-663-4647 Disability (HD). Through her work with No Smoking/Accessible Environment Policy IID, Rosangela works to promote cooperation for the For the comfort and health of all attendees, smoking is not permitted at development and empowerment of people with disabilities in any function. We also request that presenters and attendees refrain from using perfume/colognes during the conference sessions, exhibits, and the Inter-American region, as well as Spanish and Portuguese receptions. speaking countries of Europe and Africa. Rosangela has been Visitor Information a quadriplegic since an automobile accident in 1976, and Chicago Office of Tourism 312-744-2400 uses a wheelchair. Her keynote address will focus on the For general information about accessible services in and around concept of "inclusion" as a new paradigm for the millenium Chicago or to and on the importance of international cooperation regarding subscribe to their weekly faxed newsletter "Access Notes" please call: disability issues worldwide. City of Chicago, Mayor's Office for People with Disabilities Phone: 312-744-7050 TTY: 312-744-4964 BEST COPY AVAILABLE PAGE 6 17 TASH Newsletter, September 1999 1998 ANNUAL CONFERENCE

Family Reunion It's been 25 years of families meeting families at TASH and we want to celebrate! So pack your bags and come to Chicago for the 1999 TASH Conference and the Family Reunion. We welcome new attendees as well as those from past years. Stay for a few minutes or stay for the whole two 1/2 days. See you in the family gathering robin! Check the program for location when you arrive!

It's time to renew old friendships and make new `, acquantances. Here's what will be part of the frriily. gathering: Family Issues Presentations Create a Family Album(bring pictures of your family please!) Fun Activities A place to relax Watch family video_ s (bring your favorite hOme video please!)

, Help us redefine "Family" Reunion door prizes and awards For questions on the Family Reunion please contact. Lynda Atherton by e-mail at [email protected] or by phone at 815 -758 -2798

City Hall, Room 1104 CITY OF CHICAGO 121 North LaSalle Street Mayor's Office for People Chicago, IL 60602 with Disabilities Phone: 312-744-7050 TTY 312-744-4964 Web Site: www.ci.chi.iLus./Disabilities/ Dear0 Friends: On behalf of Mayor Richard M. Daley and the Mayor's Office for People with Disabilities (MOPD), I look forward to meeting you in Chicago for "TASH 2000: Our Turn Now" MOPD is proud to sponsor this conference of international importance. We trust that your stay in our city will be both productive and enjoyable. Since MOPD's creation in 1990, we have labored tirelessly to achieve our goal of making Chicago the most accessible city in the nation. You will find that our city's major tourist attractions, including the wonderfully revitalized Navy Pier and our world-class museums, are accessible to allas are our best hotels and other accommodations. It is Chicago's privilege and pleasure to host TASH members and supporters. Please count on MOPD as your local resource in assuring access to all that our city has to offer. Feel free to call us at 312-744-7050 (voice) or 312-744-4964 (TTY) when making your travel plans.

Lawrence J. Gorski, Director, Chicago Mayor's Office for People with Disabilities

Join Lawrence Gorski. Director of the Chicago Mayor's Office for People with Disabilities, on Friday. December 10 from 8:00-10:15A in a discussion of the voting rights, political voice and electoral opportunities for people with disabilities during the presentation -Awakening the '5Ieepin,g Giant. in the New Mil/ cilium.' This session is part of the Governmental Affairs Strand.

BESTCOPYAVAILABLE PAGE 7 TASHNewsletter, September1999 1'7 0 TASH TECHS

TASII TEC and Preconference Activities TASH Preconference Workshops and the symposium (co-sponsored by NADD) are full day, in-depth sessions held on Wednesday, December 8,1999. Registration is in addition to the full conference. Be sure to arrive early to participate in one of these dynamic and informative sessions; whether or not you can make it for a TASH Tech, plan to arrive in time to join us for the opening conference reception from 5:00-7:00 pm in the TASH Exhibit Hall! T-1 Expanding & Deepening research (or the ideal) and practice. presented. This session will include discus- Relationships between Community T-5 Functional-Contextual sion, interactive problem solving, exploration Members & Adults with Assessment & Portfolio Design of technology, and personal stories. Developmental Disabilities Mary Fitzgerald, Susan Catlett, Eve Cugini, Angela Novak-Amado Charlene Comstock-Galagan, Sharon Lynch T-9 Including Students with Many agencies have begun working on This highly interactive session will explore the Disabilities as Fully Participating building friendships between adults with process of functional-contextual assessment as Members of the High School disabilities and community members. This it relates to evaluation procedures under IDEA Community session will be for staff who have already 1997. The process emphasizes a team Carol Tashie, Mary Schuh, Jeff Strully initiated bridge-building efforts to: 1) share approach, (including parents), careful Why students with disabilities should spend their experiences with others, 2) find avenues examination of current data, and data their high school career with all peers and for going beyond barriers, and 3) discover collection strategies that yield meaningful strategies for overcoming obstacles that cause ideas for expanding and deepening existing information which links to appropriate IEPs. students to spend time away from typical relationships. Participants will also learn about and interact peers will be discussed. What students should with student portfolios designed by parents. be learning in classes, after-school, weekends, T-2 Creating Field-Based Networks and the transition to jobs will be featured in to Meet the Personnel Needs of T-6 Emergency Management this session. Students with Severe Disabilities Gary Lavigna and Deaf-Blindness When punishment is no longer used to T-10 Organizing for Disability Rights Susan Bashinshi, Margy Hornback, manage behavior, people ask, "What do we do and Inclusion Donna Wickham, Gwen Beegle, Lynette Lacy when the behavior occurs?" "What do we do Steve Taylor, Bonnie Shoultz and Others Kansas has implemented an innovative in a crisis?" This seminar will provide an This TASH Tech will examine a range of approach to providing exemplary education to overview of emergency management and grassroots community organizing strategies that students with severe disabilities in inclusive reactive strategies that might be used as part people with disabilities, family members, and programs. The practices of this validated of a complete, proactive and positive support advocates can use to promote the full participa- approach will describe an ongoing profes- plan. tion of people with disabilities in community sional development model relying on life. Topics to be discussed include: building excellent practicing teachers who consult with T-7 Whole Brain Learning: Inclusive coalitions with disability and non-disability teacher teams around the state. Academics, Music & Games groups, developing position statements, Robin Smith, Kate Farrar sponsoring public forums and other actions, T-3 Tools for Working: SSI Work This highly participatory workshop will working with the media, organizing petition Incentives & Transition Age Youth emphasize use of multiple intelligences to drives and letter-writing campaigns, and other Sheila Fesko, John Butterworth, Vicki Brooke, enhance academic and social engagement and non-legal and non-legislative strategies. These Ellie Emanuel, Helena Hoas, William Halloran establish a competence-oriented learning topics will be explored through presentations, Representatives from the Work Incentives community. Participants will experience small group discussions, and exercises. Transition Network will provide participants music, body sculpture, and kinesthetic games Participants will also receive an information with content material on the SSI program, the to support academics in inclusive classrooms packet on organizing strategies. impact of working on SSI benefits, creative along with other approaches that support use of the work incentives to advance career "whole brain" or "brain compatible" learning. T-11 The Behavior/Communication goals and self-determination, and the role of We will discuss applications at all grade levels Link schools in addressing SSI needs. and particular students that the participants Kim Davis, Susan Dixon may have in mind. Behavior is often overlooked as a legitimate T-4 Creating and Maintaining means of communication. This workshop will Inclusive Learning Communities: T-8 Developing Augmentative provide information to families and individu- Community, Curriculum, and Teacher Communication Systems to Support als who support people with disabilities to Inquiry Participation in General build an understanding of how different Mary Fisher, Mara Sapon-Shevin, Lucille Zeph Education Classrooms behaviors are communicative, to understand This interactive workshop will address the Rae Sonnenmeier, Michael Mc Sheehan what their messages might be and how to three essential components of inclusive Developing an augmentative communication begin to interpret those messages. learning communities: 1) community system within an inclusive educational setting building, 2) effective current and emerging requires a thoughtful process to ensure that a T-12 Civil Rights, Decision Making practices in general education curriculum and stabilized communication system is not a and Guardianship: Melding TASH instruction, and 3) reflective practice and prerequisite to being included. The phases of Values with Best Practices teacher inquiry. The presenters intend to developing such a system, including consider- Dohn Hoyle, Kathleen Harris, Joel Welber, create a community of learners that will result ing the features of technology, and selecting Sally Burton-Hoyle, Patricia Dudek, in an exciting and effective learning experi- vocabulary to increase curricular and social ence helping to bridge the gap between participation in general classrooms will be Continued on page 9 PAGE 8 1%L1 TASH Newsletter, September 1999 BESTCOPYAVAII ARI TASH TECHS

TASH TECH and Pre-Conference Activities Continued from page 8 An Opportunity for Chapter Leaders

Mayer Shevin With the establishment of guardianship for to Network and Plan for the Future! individuals with disabilities, their ability to make decisions about their own lives has In addition to the TASH Techs that are being held on Wednesday, Decem- frequently been taken away. This workshop ber 8th, TASH is holding the Annual Chapter Leadership Day An opportu- will focus on a number of preferable alternatives to support all people at risk including nity for chapter officers and representatives to share ideas, concerns and individuals with the most significant decision strategies. making support needs. Discussion will include This event has been held on the Wednesday before the conference, in one best practices in alternatives to legal guardian- form or another, for the past five years and has been critical in strengthening ship, some recent court decisions, and philosophical debate surrounding self- relationships between the International TASH Board, Central Office and determination and choice making for people Chapter Leaders. The day includes opportunities for skill building, informal who are at risk of losing their right to make sharing of ideas and planning for the future. The Chapter Leadership Day has their own decisions. This session is designed helped new chapters to identify directions for themselves and has assisted for long term advocates, family members, attorneys, case management agency staff, and established chapters to influence policy and direction within their states. all those who believe in the principles of Whether you represent a thriving, a newly established, or a struggling chapter, freedom and self-determination. the 1999 Chapter Leadership Day is an event you won't want to miss! T-13 IDEA: What Parents & All current Chapter officers will receive invitations to this exciting day of Advocates Need to Know planning and collaboration. If you are interested in starting a chapter and Dixie Jordan would like to participate in the 1999 Chapter Leadership Day on December Join the Co-director of the Families and 8tb, call Nancy Weiss at 410-828-8274, ext. 101 or e-mail: [email protected] Advocates Partnership for Education Program from PACER Center for a full day of training on IDEA following its 1997 reauthorization and newly released regulations. This workshop is organized around the six principles of IDEA '97 which are: a free and appropriate education, appropriate evaluation, IEP development, least restrictive environment, parent and student rights in decision-making, Specici I Symposium due process procedures. Also included is a CO-SPONSORED BY NADD special focus on new school discipline Behavioral Supports: Individual Centered Interventions policies. This workshop is designed to help William I. Gardner, Ph.D. and Dorothy M. Griffiths, Ph.D. parents and advocates learn what they need to know to plan an effective program for their ThiS'Symposium is kir people supporting indivichials with developrnental disabilitieS and:" children and young adults with disabilities. mental health concerns: The preSenters will describe a' range bfiriedi6L `psychiatric, psychological, social and environmental features inVolved in the deVeloPment and.. T-14 The Ethics of Touch ' _continuation of behavioral and emotional challenges that represent barriers to qUality of David Hingsburger life. Numerous case illustrations will be presented throughour to demonstrate-use This full day workshop will explore the issue of multimodal (bio-social-social) functional case formulation process in devising individual providing intimate care to people with develop- centered interventions for these challenges. The Individual Centered Behavioral Interven mental disabilities. It will also examine the role Lions described in this presentation are designed to enhance j.heOmpetencieS of:person of front line staff and their complex socio- supported rather than merely to reduce or eliminate emotional and behavioral challenges therapeutic relationship with the people they serve. Participants will discuss how these staff William I. Gardner, Ph.D., a clinical psychologist, is on thefacultY the:Rehabilitation members should define their job. Are they Psychology Program at the University of Wisconsin-Madison...Dr. Gardner Serves.ori,thei therapists? Friends? Family? Is it appropriate to Board of Directors of NADD. He is a frequent presenter at national and international meet the emotional/relationship needs of people meetings and provides training and clinical consultations to programs serving person with disabilities? What about touch? What is with significant mental health concerns. Dr. Gardner is the author of numerous articleS' most appropriate? Hugs? Handshakes? Both? and books. Neither? This session will address each of these questions. Also, participants will learn practical Dorothy M. Griffiths, Ph.D. is on the faculty of Brock University, Ontario, Canada. ways of respecting boundaries while providing Dr. Griffiths is President of the NADD Board of Directors. Het frequent'training intimate physical and emotional service. Issues workshops and consultations throughout North America ,focus, on supporting: ranging from appropriate ways to show affection persons with challenging behavioral and emotional features. Dr:-Griffiths has to how to bath and toilet someone with authored many articles and has co-authored books addreSsingehallinging betiaViors,2, significant disabilities will be addressed. in persons with disabilities.

PAGE 9 1 75 TASH Newsletter, September 1999 IN-FOCUS STRANDS 1999 In-focus Strands

The TASH conference is an incredible melding Community Living experience and find out strategies that of people, topics, and information.It is the Thursday-Saturday worked for them? Sessions in this strand place where cutting-edge dialogue on disability Strand Coordinator: Joe Wyhowshi will address these issues and more. As an issues is taking place. To help streamline some This strand focuses on a variety of issues added support to families, a number of of this cutting-edge information, TASH concerning living in the community attorneys will be available in "consulta- including supports, relationships, employ- members have taken the lead in organizing a tion rooms" throughout the day of strand sequence of sessions on identified topic areas. ment, and conversion of group living so that families can sign up for a time to A strand simply means that the sessions will situations to supported living. take place in the same room, for a designated meet with an attorney to receive legal period of time. In addition to these focused Creative Arts advice about issues of concerns regarding strands, there are other sessions on these topic Friday their child's school program. areas occurring throughout the conference. Strand Coordinator: Paula Neville Feel free to attend an entire strand, or just This strand focuses on the use of creative Early Childhood selected sessions within a strand. and performing arts to empower individu- Thursday and Friday als through self-expression and to foster Strand Coordinator: Beth Brennan and Successful Aging for Adults with inclusive schools and communities. Elizabeth Erwin Developmental Disabilities: State- This two day strand will highlight critical is- of-the-Art Approaches to Support The Criminal Justice System and sues and practices in creating inclusive early Later Life Transitions Persons with Disabilities education and child care options for young Thursday Thursday and Friday children with severe disabilities and their Strand Coordinator: Alan Factor Strand Coordinators: Barbara Ransom and families. This strand presents state -of- the -an Lisa Sonneborn approaches to support the successful aging Ten years after the ADA, persons with Employment and Transition of adults with developmental disabilities disabilities continue to be voiceless victims, Thursday Saturday and their families including: progressive witnesses and denied their constitutional Strand Coordinator: Mike Callahan models for dementia care, older women's protections as accused persons. This strand This strand will highlight over 30 sessions health issues, promoting choices and provides participants with practical covering hot issues in the employment and options in the community, and supporting information on how they can enhance the transition of people with significant families in making future plans. abilities of self-advocates to protect disabilities. Topics will include natural themselves, develop strategies to minimize supports, choice, conversion, individual- Advocacy unjust practices, and provide services and ized planning, and much, much, more! Thursday-Saturday build partnerships with community Strand Coordinator: Liz Obermayer organizations in order to address the unmet Faith and Religion Join this lively strand for a series of presenta- needs of these individuals. Friday tions on advocacy and self-advocacy. Sessions Strand Coordinator: Kim Farrington by advocates and self-advocates focus on the New Models for Reaching Learners This strand focuses on the important role of skills needed to effect change at both the per- at a Distance religion in the lives of people with disabili- sonal and policy levels. All the sessions within Thursday ties. Too often, faith and religious beliefs the strand provide opportunities for discuss- Strand Coordinator: Fred Spooner are ignored. Presenters in this strand will ing ideas and sharing strategies for success. Four innovative approaches for reaching provide information about current research learners at a distance will be presented. on the accessibility of faith communities. Supporting Students with Autism The models include Web based or indi- Videos offering practical strategies for Spectrum Disorders in Typical vidual access, video conferencing, satellite, making churches and congregations Classroom Settings and two-way interactive TV accessible will also be presented. Friday Strand Coordinators: Cathy Apfel and Due Process Family Gatherings Rae Sonnenmeier Thursday Thursday - Saturday This strand will provide participants with the Strand Coordinators: Gail McGregor and Judy Strand Coordinator: Lynda Atherton knowledge, skills, and strategies to effec- Gran From birth through adulthood, the Family tively educate students with Autism Are you facing the daunting prospects of Strand includes many exciting sessions. Spectrum Disorders in typical classroom going through a due process hearing to Some of these are: early intervention, respite, settings. Topics include: collaboration with get a good program for your child? Have brothers and sisters, assistive technology, families; enhancing communication and you been asked by a parent to be an becoming an involved parent, personal language skills; literacy; disigning activities expert witness and you have no idea what futures planning, a legislative forum, and a chance to meet and honor past TASH Board to foster social interactions; sensorimotor that might involve? Do you want to hear issues, self-regulation strategies, and positive Members who can tell us what is happening from others who have been through this behavioral supports. now in their families. If you become tired, Continued on page 11

PAGE 10 1 76 TASHNewsletter,September 1999 IN-FOCUS STRANDS

In-Focus Strands inclusion/exclusion around the world. It to welcome and support participation by Continued from page 10 will be structured for interactive discus- people with disabilities and what you can sion. Following brief panel presentado to make it happen in your neighborhood. bored, or overwhelmed, join us in the tions, both presenters and participants will respond to focused discussion Family Gathering Room to relax, laugh, have Multicultural Issues questions to identify emerging themes fun, meet other families, reunite with Thursday families, and/or network. around the global inclusive movements as Strand Coordinator: Lynda Baumgardner well as to highlight activities in various What a colorful and diverse world we have! Governmental Affiars nations and regions across several With the events of this year, it is important Friday and Saturday continents. The day will end with some that we nurture, each day, the beauty of Strand Coordinators: Marcie Roth and Dan strategic networking and discussion everyone's differences. Be it color, culture, Dotson about how TASH members can become or ability. This strand will explore the Join this strand as it explores the critical more actively involved in international successes and challenges of creating governmental, public policy and inclusive education efforts. culturally competent family supports, grassroots organizing issues affecting educational programs, conferences and people with disabilities and their advo- High School Inclusion: Making it assistive technology. cates. Work for Everyone Friday Paraeducator Issues and Practices Guardianship: Melding TASH Strand Coordinators: Carol Tashie, Mary Thursday Values with Best Practices Schuh, Jeff Strully, Doug Fisher and Cheryl Strand Coordinator: Michael Giangreco Friday Jorgensen This strand addresses paraeducator issues Strand Coordinators: Dohn Hoyle and On the verge of the new millenium, many and practices ranging from national Mayer Shevin high school students with disabilities still standards to school and classroom This strand includes sessions that discuss spend their days in segregated classrooms, practices. guardianship as the last civil rights frontier, life skills programs, and separate commu- exploration of strategies for best practices in nity-based instruction. This all day Personnel Preparation: Critical alternatives to legal guardianship, issues interactive, free-flowing, and productive Issues related to wills and trusts and a strand is designed for people interested in Thursday crackerbarrel to engage in open discussion making high school inclusion a reality for Strand Coordinator: June Downing about other important issues related to all students. Participants will share new This strand will address issues in personnel guardianship. information, gain innovative strategies, and preparation for school and community problem-solve common obstacles to settings. Promising new strategies will be Inclusive Education achieving fully inclusive high schools. Join covered and questions raised regarding best Thursday the strand coordinators, and many others, approaches to adopt. Strand Coordinator: Cheryl Jorgensen to learn, challenge, debate and work Students with significant disabilities have together to make high school inclusion a Positive Approaches/Positive been included in general education classes reality for all students. Behavior Support since the mid-1980's. To this day, however, ThursdaySaturday there remains much confusion and What Will it Take? Standards and Strand Coordinators: Tim Knoster and difference of opinion about the definition of Assessment for All Rob O'Neill inclusion and more importantly, what it Saturday This strand will highlight practical applica- ought to look like in everyday practice. We Strand Coordinators: Doug Fisher and Caren tion and research on positive approaches to have come to be suspicious of phrases like Sax supporting individuals with histories of "partial inlcusion" and "inclusion program" This strand focuses on standards and problem behavior. In particular, this strand because we have seen supposedly included assessment, including the ways in which will highlight ways to expand findings and students leaving the school in segregated students with disabilities have participated horizons in research, and translation of groups for community-based instruction, and experienced success with these reform research into practice, across home; school, sitting by themselves at lunch, being left efforts. and community settings. behind on field trips, and sitting in the back of the classroom tethered to a teaching Facilitating and Supporting Professional Development: More assistant working on an "alternate" curricu- Inclusion in Community Recreation Powerful Teaching lum. Surely this ISN'T inclusion, but then, Sports Friday and Saturday what exactly IS inclusion and what Thursday Strand Coordinator: Janice Payne strategies promote the values and outcomes Strand Coordinator: Cindy Burhhour With the authorization of IDEA, there is that TASH members value? Community recreation and sports opportu- tremendous emphasis on training for staff. nities are for everyone! Come find out how Professional development is seen as the key International Inclusion to access all the fun stuff to do in your to successful school change and restructur- Thursday community. Learn how inclusion in ing, improved learning outcomes for all Strand Coordinators: Anne Smith and Zuhy recreation happens, what supports are students, and access to general education Saheed available, how supports and services are This strand will explore dimensions of financed, what recreation providers can do Continued on page 12

PAGE 11 17 7 TASH Newsletter, September 1999 TASH CONFERENCE

In-Focus Strands The IDEA requires functional behavioral features sessions from urban school districts Continued from page 10 analyses for student with challenging around the country that have overcome many behaviors,yet there are a substantial of the perceived barriers to urban education; for students with all learning styles and number of students with "mild" disabili- join them as they reveal that urban education disabilities. But....what models of profes- ties whose behaviors are viewed as can be a fun, exciting, golden opportunity for sional development are the most successful? voluntary. This strand will address the innovation. This strand promises to take What are the characteristics of effective participants beyond "talk"; participants will needs of these youngsters, their families, professional development? How can we leave with some strategies to solve problems, train and retrain the best and the brightest to and their schools for technologies and to overcome barriers and to make the teach all our nation's children and youth? supports that enable them, too, to lead changes that are necessary in providing These are some of the questions to be inclusive and meaningful lives. quality education for children with disabili- addressed by this strand. ties in complex urban settings. Urban Education Self-Determination Thursday Saturday Thursday Saturday Strand Coordinators: Mark Doyle, Anne Smith, Strand Coordinators: Hank Bersani and Lou Brown and Alison Ford Liz Obermayer Not long ago, the idea of educating and This strand focuses on promoting self supporting children with disabilities in determination and choice in all areas of life inclusive urban settings was perceived as an and across the life span. overwhelming challenge. This strand

Boldly Addressing Issues of Sexuality in the New Millennium Thursday Strand Coordinators: Wanda Blanchett and how easy it is to get FREE registration to this Ann Heler year's information-packed TASH Annual Confer- Sexuality and sexual expression are natural ence in Chicago! and important aspects of each of our lives. Accordingly, these sensitive and critical "How?" you inquire excitedly. By volunteering, of course! issues require thoughtful and individualized attention. Individuals also need support If you would like to attend the conference and save on registration fees, this. and information to act upon their choices i5the deal for you!Asa volunteer, you donate a minimum of 10 hours of service: and interests. This strand will highlight during the conference inexchange for complimentary registration to attend sessions that address issues related to this conference sessionsduring your non-volunteer periods. critical topic. Whether you've participated as a volunteer before, or would like todo 50for the first time,your services are urgently needed as a Conference Children and Youth with Special Volunteer! Health Care Needs If you are interested, please contact Friday Strand Coordinator: Donna Lehr Priscilla Newton at 1-800-482-8274, ext. 102 This strand focuses on children and youth or e-mail with special health care needs. It features sessions on family supports, educational considerations, and medical interventions.

Spirituality Towards Justice and Equity New This Year! Thursday Saturday Due to popular demand, select sessions will be audio-taped this year! Strand Coordinators: Maureen Keyes and Madeline Hafner Sessions that will be taped will be marked in the conference program. Each As we strengthen our voices to take "our turn", sessions within the spirituality strand registrant will receive one tape complimentary with registration. Take your free provide multiple perspectives on a variety tape coupon (given at conference of topics including futures planning, friendship, and teaching strategies. registration) to the Creative Seminars

Students Who Severely Recording and Reproduction Booth in the Challenge Schools But Who Exhibit Hall and select your tape. While Do Not have Severe Disabilities you are there, purchase additional tapes Friday of your choice! Strand Coordinator: Linda Rammler

PAGE 12 1 7 8 TASH Newsletter, September 1999 THURSDAY SESSIONS

Thursday, Positive Behavior Supports and What About Me?: Creating Safe December 9, 1999 Autism Educational Environments for Interest Area: Positive Approaches Nonheterosexual Students 10:15 AM- 11:15 AM Michael McSheehan, Rae Sonnenmeier Interest Area: Sexuality Strand Strategies for Developing Wanda Blanchett, Pamela Wolfe Policies & Systems to Improve Creating School Change: Models Paraeducator Performance of Team Problem Solving The Essence of Inclusion Interest Area: Paraeducator Strand Interest Area: Inclusive Education Interest Area: Inclusive Education Strand Anna Lou Pickett Donna Wickham, Carole Gothelf, Jeff Strully Jerry Petroff, Kathleen Gee, Lillian McCuen, Steven's Story: Overcoming The Marguerite Hornback Recreation & Sports: What are Barriers to High School Inclusion your rights to access and your Interest Area: High School Inclusive The Disability Action Hall - A responsibilities as Participants Education Political Space for People with Interest Area: Leisure & Recreation Strand Ann McKee, Susan Hamre-Nietupski Disabilities and their Allies Cynthia Burkhour Interest Area: Self-Determination Slidin' into Home: Supporting Debbie Reid, Ryan Geake One Eighty One Self-Determination through Interest Area: Spirituality Strand Personal Support Agents A Journey to Independent Typing: Tom Bauer Interest Area: Self-Determination Strand Practice, Practice, Practice Phil Ferguson, Dianne Ferguson, Interest Area: Assistive Technology Thursday, Rick Blumberg Paula Kluth, Franklin Wilson, Pat Wilson December 9, 1999 Developing and Maintaining Generic or Specialized Special 10:15 AM - 12:30 PM Inclusive Employment & Education: What Are We Doing? Home Ownership Strategies: A Activities for Everyone Interest Area: Personnel Preparation Strand National Perspective on Interest Area: Employment Strand June Downing, Joanne Eichinger Assisting People to Purchase a Gail Fricke, Karen Brineger-Price, Home Scott Baird An Elementary Teacher Educator Interest Area: Community Living Strand in a Special Education World Joe Wykowski, Steve Allen Teaching Secondary Teachers To Interest Area: Higher Education Work with Students with Pennie Olson The Work Opportunities Project Disabilities of the Chicago Public Schools Interest Area: Higher Education Open Inquiry: A Post-Positivist Interest Area: Urban Strand Steven Lyon Interpretation of Facilitative Lou Brown, Deloras Freeman Communication Shaping a New Direction for Interest Area: Research The New Evolution of Support Parents & Professionals During Linda Ware, Lisa Cartwright Circles: In and Out of the Transition Classroom Interest Area: Transition Strand Getting the Process Together Interest Area: Inclusive Education Bud Cooney, Christi Hendrickson, Interest Area: Advocacy Patrick Schwarz, Cindi Birse-Swanson, Kim Michele Dimon-Borowski Roy Brown Booth, Nancy E. Brown, Sharon Constabile

Project Aspire - Supporting Team Training for Positive Providing Transitional Parents who Experience Behavioral Support: Individual Psychosocial Rehab. Services To Cognitive Delays State & Community Levels Young Adults with Emotional Interest Area: Family Interest Area: Positive Approaches Strand Disturbances Kathy Ballard, Cathy Schvetter, Chris Jacki Anderson, Meme Nieneman, Interest Area: Transition Strand Sadenwater, Desiree Tilton, Peggy Terhune, Richard Albin Kate Donegan, Harry Carson Roxanna Soots, Sandy Taylor Statewide Technical Assistance to He Ain't Heavy He's My Meaningful Inclusion of Children Build Capacity in Schools Brother with Severe Disabilities in Play- Interest Area: Inclusive Education Interest Area: Family Strand Based Settings Ruth Henning, Kathryn Cox Amanda Segroves, Anita Marguerite, Cheryl Interest Area: Early Childhood Strand Crosby, Dan Carter, Sylvan Segroves, Mary Frances Hanline, L. Penny Rosemblum Wendy Atherton

Continued on page 14 BEST COPY AVAILABLE PAGE 13 1 7 9 TASH Newsletter, September 1999 THURSDAY SESSIONS

Continued from page 13 Maintaining the Focus on Philadelphia Inclusion Network - Learning: Effective School & Welcoming All Children Facilitating Community Classroom Management of Interest Area: Early Childhood Strand Membership Disruptive Behaviors Lillian McCuen, Philippa Campbell, Interest Area: Advocacy Interest Area: Students Who Severely Challenge Suzanne Milbourne Paul Selby, Wendy Welsch Schools Daniel DeMarle I'm Somebody: Personal Safety Culturally Competent Family Skills for Children with Disabilities Supports in Western Reforming Initial and Ongoing Interest Area: Sexuality Strand Massachusetts: Work in Progress Professional Development Pnina Tobin Interest Area: Multicultural Strand Douglas Interest Area: Personnel Preparation Strand McCallum, Barbara Morrell, Christine Dianne Ferguson, Elizabeth Kozleshi Technology, Web Based Lynch, Dana Dansereau, Josefina Castillo, Instruction, Staff Development Michael Romanovitch, Pat Ononibahu , Advisor Roles, Responsibilities and Postitive Behavior Support Raquel Rodriguez and Issues in the Self-Advocacy Interest Area: Personnel Preparation Movement Wayne Sailor, Amy McCart, Jody Britten, Social Justice Teaching in Interest Area: Self-Determination Strand Rachel Freeman Inclusive Classrooms Mary Hayden, Debbie Prochner, Jean Bowen, Interest Area: Inclusive Education Leighann Reusche Beyond Normalization Mara Sapon-Shevin Interest Area: Positive Approaches People Who Need People: The Masoud Moazami The Textbook Presence:Disability Direct Service Workforce as Decor or Politics Interest Area: Management Issues Interest Area: Inclusive Education Nicole Janer, Christine Chang, Virginia Epps, Paula Neville Michelle Stone, Prudenee York Continued on page 15 Self-Advocate Leadership Interest area: Advocacy Strand Cathy Ficher-Terrill, Tia Nelis Are you facing the daunting prospects of going through a Innovative Models of Dementia due process hearing to get a Care for Older Adults with Developmental Disabilities good program for your child? Interest Area: Aging Strand Have you been asked by a Lauren Bertagna, Marcy Nelson, parent to be an expert witness Matt Janichi and you have no idea what Empowered Families Vitalize that might involve? Do you want to hear from others who have been Change to Missouri's System through this experience and find out strategies that worked for them? Interest Area: Family Gail McGregor and Judy Gran have organized this strand to include Suzanne Woolever, Deana O'Brien sessions that will address these issues and more. As an added support Crackerbarrel on to families, a number of attorneys will be available in "consultation Implementation Issues in rooms" throughout the day of strand so that families can sign up for a Support Employment and time to meet with an attorney to receive legal advice about issues of Transition Interest Area: Employment Strand concerns regarding their child's school program. Mike Callahan With the support and coordination of Judith Gran from the Public Interest Law Center of Philadelphia, a number of lawyers with Thursday, expertise in inclusive schooling practices will be available to provide December 9, 1999 individual consultation to families attending the conference. This free 11:30 AM - 12:30 PM service is being offered in conjunction with the Due Process Strand. Characteristics of an Inclusive Sign up for this great opportunity to get some advice and information Pre-service Program to Prepare about people in your community that can support your efforts to obtain Teachers Interest Area: Personnel Preparation an inclusive educational program for your child. John Filler, Jeffery Gelfer, Peggy Perkins BESTCOPYAVAILABLE TASH Newsletter, September 1999 PAGE 14 IS 0 THURSDAY SESSIONS continued from page 14 Creative Marketing to Welcome Teaching Positive Behavior Everyone! What Images and Support: How to Help Schools Thursday, Words Send Messages of Inclusion Implement IDEA 1997 December 09, 1999 Interest Area: Leisure and Recreation Strand Interest Area: Personnel Preparation Strand 11:30 AM - 12:30 PM Cindy Burkhour Ethan Long, Don Kincaid, Scott Spaulding Are Empirical Research and The Role of Spirituality in Family-focused Strategies for Science Still Important in TASH? Leaders for Justice and Equity Surfing the Internet's Disability Interest Area: Research Interest Area: Spirituality Strand Resources Robert O'Neill Maureen Keyes Interest Area: Family Strand Emily Watts How to Implement Natural Support Thursday, Strategies in Employment Settings December 9, 1999 I Feel More Like an Assistant Interest Area: Employment Strand than a Teacher: Maximum Keith Storey, Denise Mautz, 11:30 AM - 1:45 PM Participation or all Teachers Nicholas J. Certo, Shelly McHugh Conducting Functional Interest Area: Inclusive Education Behavioral Assessments & Linda Dave rn Students Who Severely Designing ISP's for Students at Challenge Schools: Supporting School The Role of Paraeducators in General Education Staff Interest Area: Positive Approaches Strand Inclusive Classrooms: Their Own Interest Area: Students Who Severely Tim Knoster Perspective Challenge Schools Interest Area: Paraeducator Strand Pamela Holmdal, Joan Pabisz-Ruberton Thursday, June Downing, Denise Clark, Diane Ryndak December 9, 1999 Community-Based Literacy Teacher Preparation: Inclusion of Program Design for Adults w/ 12:45 PM - 1:45 PM Service-Learning Projects Mental Retardation Agency Conversion from Group Involving Persons w/Disabilities Interest Area: Community Living Homes to Individualized Interest Area: Higher Education Robin Reale Alternatives Jean Hauser Interest Area: Community Living Strand First Steps in Making High Pam Walker, Jeffrey L Strully, Inclusive Education Practices for Schools More Inclusive Patricia Fratangelo Supporting Students Who Use Interest Area: High School Inclusive Augmentative Communications Education Victims: No Longer Alone Interest Area: Inclusive Education Strand Alan Ripp, Karen Zimbrich Interest Area: Criminal Justice Strand Rae Sonnenmeier, Michael McSheehan Leigh Ann Davis, Cheryl Guidry-Tyiska Partnership Toward Jobs Increasing Interaction at a Interest Area: Transition Strand CARF Accreditation Update Distance: Benefits Derived from Helene-Marie Collins, Sharon Bargiel Interest Area: Management Broadcast Journalism Dale Dutton Interest Area: Distance Education Strand Four Stories of Inclusion: The Fred Spooner Impact of Individualized General Education Access: Technical Assistance A State Department of A Survey for Inclusion of Latino Interest Area: Inclusive Education Education's Perspective Parents in School Programs Donna Gilles Interest Area: Alternate Assessment Interest Area: Multicultural Strand Nanette Olivier, Gayle Melville, Ming-Gon John Lian, Sandra Fontanez- Preparing School Professionals Margaret Lang Phelan to Supervise Paraeducators Interest Area: Paraeducator Strand The Actions of Including ALL Parents' Perspectives on Nancy French Students Important Practices in Communication for Children Who The Difference Between "In" and Interest Area: Inclusive Education Christine Salisbury, Kathy Chapman are Deaf-Blind "With" Interest Area: Family Strand Interest Area: Inclusive Education Strand Kathleen McNulty, Blanche Stetler, Carol Tashie Jerry G. Petroff

1S1 Continued on page 16 PAGE 15 TASH Newsletter, September 1999 THURSDAY SESSIONS

Continued from page 15 Self-Determination Curriculum The Role of Spirituality in One's Disabilities and the Internet Sampler Life: Coursework in Higher Ed. to Interest Area: Advocacy Strand Interest Area: Self-Determination Strand Prepare Leaders for Justice Jacky Comforty, Lisa Comforty Diane Browder, Bob Algozzine, David Test, Interest Area: Spirituality Strand Meagan Karvonen, Wendy Wood Colleen Capper Evaluating the Processes and Outcomes of an Inclusive School Body and Soul: Sexuality in Context Thursday, Program Interest Area: Sexuality Strand December 9, 1999 Interest Area: Research David Hingsburger 12:45 PM - 3:00 PM Stacy Dymond, John Kregel, Martha Nigrelli Perceptions of Health & Aging by What Hollywood Tells Us Women with Intellectual About Education Today From Institutions to Inclusion Interest Area: Inclusive Education - A Roadmap for Success Disabilities Interest Area: Aging Strand Sharon Freagon, Ann Kremer, Bill Peters, Interest Area: Management Theresa Montalbano Patty Veselshy, Marti n Romero-Mitchell, Allison Brown, Carol Gill Max Chmura Recreation and Sports "Just Do Acting Locally for Systems & It": Signing up: What to do, say, Organizational Change in Florida Network on Deaf- Employment Services Blindness: Implementing ask for, share, etc. Interest Area: Leisure & Recreation Strand Interest Area: Employment Strand Successful Transition John Butterworth, Sheila Fesho Interest Area: Transition Strand Cindy Burhhour Lauri Triulzi, Donna Gilles, Continued on page 17 Melinda Morrison

We're All People First Interest Area: Ethics/Rights Ann Marie Campbell Thursday, December 9, 1999 12:45 PM - 1:45 PM The Vermont Self-Determination Project Interest Area: Self-Determination Join Anne Smith and Zuhy ernatignal Inc Karen Topper, Dawn Arsonault, Kim sive Education strand as they eXp 6 611 o incluS Daniels, Maggie Daniels, Sue Ainroth exclusion around the world. It will d The Alternative Assessment discussion. Following brief panel sent,4ork r- en Requirement: Opportunity to and participants will respond to focuse 7diS6USSion questions,to Bring About Meaningful identify emerging themes around the global..giclusive move- cr: Curriculum Change ments as well as to highlight activities in various,nationstand Interest Area: Urban Strand Alison Ford regions across several continents. The day will end with some strategic networking and discussion about how TASH members Inclusive Early Childhood can become more actively involved in international inclusive Programs Rewards and education efforts. Roadblocks Interest Area: Early Childhood Strand This strand features a panel of dynamic speakers including: Roger Bailey Carol Berrigan, Dora Bjarnason, Mary Ann Curulla, Shalini Assessment as a Way of Seeing Dave, Rosario Diaz-Greenberg, Sue Hamre-Nietupski, Kenn and Being Jupp, Levan Lim, Mary McNeil, Rhonda Neuhaus, Kala Interest Area: Inclusive Education Parasuram Shrikanth, Florence Seah, Susan Sygall, Jacqueline Terri Jo Smith Thousand, Rich Villa, June Yen Siew Sim.

BEST COPY AVAILABLE PAGE 16 1 52 TASH Newsletter, September 1999 THURSDAY SESSIONS

Continued from page 16 Implementing Employment Important Characteristics of Services for People With Inclusive Community Preschool & Herb Lovett Symposium: Disabilities through a One Step Daycare Programs "Knowledge vs. Wisdom: What Career Center Interest Area: Early Childhood Strand do we know and what do we Interest Area: Employment Strand John Filler, Barbara Purvis, Catherine think we know?" Mike Callahan Lyons, Cynthia Lau, Jeffrey Geller Interest Area: Ethics/Rights Anne Donnellan, Sally Young Thursday, Including ALL Students in the December 9, 1999 Regular Classroom: Strategies & An Interactive Process for 2:00 PM - 3:00 PM Techniques Assessing Nonsymbolic Interest Area: Inclusive Education To Be or Not to Be Instructive in Communication: Pilot Findings Daniel DeMarle Interest Area: Communication Inclusive Settings Martha Snell, Filip Loncke Interest Area: Paraeducator Strand You've Got to Have Friends: Mary Lasater Mothers' Work and Disability Focusing on the point of Interest Area: Research Transition Preliminary Findings from the Perri Harris Interest Area: Transition Strand Self-Determination Synthesis Nicholas Certo, Caren Sax Denise Mautz, Project Shifting the Balance: Steps and Holly Wade, Ian Pumpian, Interest Area: Self-Determination Strand Strategies to Increase Kimberley Smalley Diane Browder, Bob Algozzine, David Test, Community Support Meagan Karvonen, Wendy Wood Interest area: Community Living Strand Susannah Joyce Continued on page 18

PRESIDENTIAL TASK FORCE ON EMPLOYMENT OF ADULTS WITH DISABILITIES TO HOLD TOWN HALL MEETING AT TASH CONFERENCE: DECEMBER 8, 1999 2:307:30 PM

The Presidential Task Force on Employment of Adults with Disabilities is holding a series of Town Hall Meetings across the nation to give key stakeholders the opportunity to provide direct input to Task Force Members. The Task Force will hold its third Town Hall Meeting on December 8, 1999, in concert with the TASH conference. The Presidential Task Force is charged with creating a "coordinated and aggressive national policy to bring adults with disabilities into gainful employment at a rate that is as close as possible to that of the general adult population." The purpose of this Town Hall Meeting is to invite you to address the alarm- ing unemployment rate among Americans with disabilities.Particular focus is requested at this meeting on expanding employment opportunities for people with the most significant disabilities, including strategies for increasing choice and community based employment, use of technology, and business/entrepreneurial development. TASH members are encouraged to participate in this unique opportunity. Additional information will be provided in a subsequent mailing. For questions, please contact Denise Marshall at (410) 828-8274, ext.103.

Additional information about the Task Force is available at www.dol.gov

BEST COPY AVAILABLE PAGE 17 183 TASH Newsletter, September 1999 THURSDAY SESSIONS

Continued from page 17 I Don't Have to Hurt Myself: Building Inclusive Education in a Functional Communication Los Angeles School District Training School Psychologists to Training Interest Area: Urban Strand Facilitate Inclusion of Students Interest Area: Communication Mary Falvey, Nancy Franklin, Ricki Light, with Disabilities Cheryl Merical Whitcomb Haslip Interest Area: Personnel Preparation Strand Crisis, What Crisis? Supporting Christine Cole, Lori McCann, Developing Advocacy Networks Persons with Challenging Tara Shibitsky for a Stronger Voice Behaviors in the Community Interest Area: Advocacy Strand Interest Area: Positive Approaches Strand Reviewing Sex Education Vendella Collins, Claudia Wise, Axel Junker, Behg Garrey, Dan Rossiter Curricula for Persons with Donald Trout Disabilities: Savvy Consumerism A Transformation of Services for 101 Teaching Word Problem-Solving Students 18-21 Years Old Interest Area: Sexuality Strand in Inclusive Settings: A Schema Interest Area: Transition Strand Pamela Wolfe, Wanda Blanchett Based Approach Robin Wood Interest Area: Inclusive Education Building Foundations: Attaining Caroline DiPipi, Edward Grasso A TASH Family Genealogy Alertness /Attention in Children Interest Area: Family Strand with Severe Disabilities Weaving Tapestries of Inclusion: Lynda Atherton, Adelaide Comegys, Bud Interest Area: Students Who Severely Seven Threads to Strengthen Frederick, Jeffrey L Strully, Thomas Powell Challenge Schools Membership Robin Greenfield, Gail Brown Interest Area: Inclusive Education Thursday, Terri Vandercook Safe City Settings: Congregate December 9, 1999 Living - Non-intrusive Supports Breaking Down the Barriers: 3:15 PM- 4:15 PM Providing for Safe Community Preparing Teachers to Teach All The Self-Determination Scale Living Students Interest Area: Self-Determination Strand Interest Area: Community Living Interest Area: Personnel Preparation Daniel Baker, Gary Sappington, Debra Haines, Margaret Griffin Liz Keefe, Julia Sherba de Kaia Tollefson, Rhonda Kelsch, Rob Horner, William Ard Leslie M. Lederer, Loretta Salas, Pam Rossi Family Support in Washington Support for Harmful Actions State: The Family Support Practical Approaches to Interest Area: Positive Approaches Opportunity Program Supporting Older Families in Doug Gragson, DeAnna White Interest Area: Family Making Future Plans for their Lyle Romer, Beth Aigbe Relatives Academic Engagement in High Interest Area: Aging Strand School: Creating Opportunity for Blowing in the Wind: Developing Alan Factor All Students a Culturally Competent Interest Area: High School Inclusive Conference for Native Americans Achievement of High Standards Education Interest Area: Multicultural Strand via the General Education Robin Smith Lynda Baumgardner Curriculum Interest Area: Inclusive Education Strand Our Turn Now: Including All Issues in Alternative Medicine Cheryl Jorgensen, Douglas Fisher Children in Child Care (Healing Modalities) Interest Area: Early Childhood Strand Interest Area: Spirituality Strand Sports & Recreation Inclusion Marilyn Dunning, Karen Martin Alan Berger Supports: What are they and how do you get them? Instructional Personnel Access to Academics: The Interest Area: Leisure and Recreation Strand Perspectives on Effective "Second Generation" of Tracey Crawford Inservice Practices Inclusion Interest Area: Personnel Preparation Strand Interest Area: Inclusive Education Victims with Disabilities William Sharpton, Cathie Koss, deVergne Doug Biklen, Diana Straut, Paula Kluth Interest Area: Criminal Justice Strand Goodall, Linda Flynn, Margaret Lang, Audrey Badger, D.J. Stemmler Nanette Olivier Videoconferencing Technology: Setting Future Directions in Thursday, Personnel Preparation Interest Area: Distance Education Strand December 9, 1999 Continued on page 19 Martin Agran, Richard Kiefer-O'Donnel 2:00 PM- 4:15 PM 84 TASH Newsletter, September 1999 BESTCOPYAVAILABLE PAGE 18 THURSDAY SESSIONS

Songs of Liberation and Community Friday, 8:00 10:00 PM

With Mara Sapon-Shevin and Mayer Shevin and folk singers from the "Knowledge versus Wisdom: What do we know and what do we Chicago area think we know?" Songs will include (among others) "We Shall Not Be Moved," December 9th, 12:45 -3:00 p.m. "Ain't Gonna Study War No More," "De Colores," and "We Shall Overcome" Before his untimely death in 1998, Herb Lovett had been People struggling for their rights have always used music and singing developing a major work around mythology in the fields of to stay connected and share their stories with others. Music is the model of special education, rehabilitation, service and care. He proposed an inclusive activity in which everyone can participate and through which a series of questions to challenge himself and us all regarding we learn the joy and power of many voices together. The civil rights movement, the women's movement, the movement for our stories about what we know and think we know on topics gay liberation and the disability movement have all produced wonderful such as mental retardation, changing behavior, autism, songs that inspire, educate, and lift our spirits. intelligence, support, stigma and so forth. This symposium, Local Chicago folk singer will be joining with a number of TASH Mem- the first in what we hope will be an annual event, will feature bers to lead an evening of song, celebration, and musical fun. Come to sing, listen, clap, and meet old and new friends, all are wel- a number of TASH members addressing these topics. The come... you don't have to be a "singer" to come and enjoy yourself. format will be open conversation, which we hope will If you have songs you would like to share at this gathering please call encourage an ongoing dialogue and self-reflection during the us at 315-425-0251, leave a note at the TASH Information Table at the TASH conference and beyond. Conference or let us know at the beginning of the gathering.

Continued from page 18 Everybody Belongs: Educational Breaking the Barriers: Supports and Advocacy Enhancing Individual Choice and Putting the "IN" into Inclusion Strategies for Inclusion Opportunities Interest Area: High School Inclusive Interest Area: Inclusive Education Interest Area: Research Education Nila Benito, Georgia Pappas Mary McCarthy, Laura Stough, Julie Schackmann, Nancy Spejcher, Nicole Caldwell Pandora Taylor, Vicki Niswander Crackerbarrel on Paraprofessional Issues A 12-Step Program for Recovering AAC in Guatemala Interest Area: Paraeducator Strand Modernists Interest Area: Multicultural Strand Pat Mueller, Anna Lou Pickett, Michael Interest Area: Transition Strand Janet Duncan Giangreco, Patricia Mueller, Patrick Schwarz Laura Owens-Johnson, Diane Ormsby

Preparing Secondary Educators Promoting Choices & Options in Leadership for Inclusive & for Inclusive Education: Crossing the Community that Support Continuous School Improvement the Lines Later Life Transition Interest Area: Inclusive Education Interest Area: Higher Education Interest Area: Aging Strand Elizabeth Kozleski, Dianne Ferguson Alice Udvari-Solner, B. Bradford Brown Elizabeth DeBrine, Tia Nelis Successful Job Development Web-based Inservice Instruction Financing Inclusion Supports in Using Employer-Tested for Practicing Teachers in Severe Recreation and Sports: How do Employment Practices Disabilities they do it? Interest Area: Employment Strand Interest Area: Distance Education Strand Interest Area: Leisure and Recreation Strand Melinda Mast, Joan Sweeney Barbara Ludlow, John Foshay, Michael Duff, John McGovern Sara Brannan Be What You're Looking For: Thursday, Family Support by Families Shifting the Special Education Interest Area: Family Paradigm to Realize Inclusive December 9, 1999 3:15 PM - 5:30 PM Terri Devine, Chuck Rinchiuso, John Fogarty, Schooling Kim Orlando, Linda Rinchiuso, Interest Area: Inclusive Education Strand Disability and Social Change: An Lisa Reninger, Melinda Zambito, Beth Schaffner, Barbara McKenzie Exercise in Perspective Mike Grunewald, Mike Reninger, Pat Interest Area: Advocacy Strand Fogarty, Patti Rizzetto, Peggy Grunewald, Self-Employment Genevieve Ameling Sandy Pazerunas Interest Area: Community Living Strand Michelle Flynn, Joe Wyhowshi Continued on page 20 185 BESTCOPYAVAILABLE, PAGE 19 TASH Newsletter, September 1999 THURSDAY SESSIONS

Continued from page 19 Ending the Silence: Vocabulary International Human Rights and Strategies for Enhancing Advocacy for People with Mental Spitituality and Teaching: One Communications Disabilities Teacher's Perspective Interest Area: Criminal Justice Strand Interest Area: Multicultural Strand Interest area: Spirituality Strand Diane Nelson Bryen, Beverly Frantz Eric Rosenthal, James W. Conroy, Madeline Hafner Mary F Hayden Thursday, From Hawaii to Maryland - A Practicing What We Preach: Compilation of Qualitative Case December 9, 1999 Restructuring Higher Education Studies in Self Determination 4:30 PM - 5:30 PM Teacher Preparation Programs Interest Area: Self-Determination Desperate Respite Interest Area: Inclusive Education Anita Yaskauskas, Ellen Fisher, Barbara Ayres, Bobbi Schnorr Joan Bernotsky, Susan O'Connor Interest Area: Family Strand Nancy Olson Person Centered Approaches - Ten Years of Distance Learning: Much More than Planning Unsolved Mysteries Solved! Impact on Severe Disabilities in Interest Area: Independent Living Kentucky Interest Area: Management Nancy Moore, Julie Guitard, Margaret Interest Area: Distance Education Strand Rich Tutt Cantey Belva Collins, Ann Griffen, Jennifer, An Ethnographic Perspective on John W. Schuster, Meada Hall Consultation for Inclusion Hey, What About the Physical Bill's Supported Living Interest Area: Inclusive Education Education Teacher's Involvement Michael McSheehan, Rae Sonnenmeier in Transition Arrangement Interest Area: Transition Strand Interest Area: Community Living Strand Unlocking Maryland's Waiting List Joanne Suomi Bill Coffelt Interest Area: Self-Determination Before You Write Another Kathy Perkins, Diane Coughlin All Children Together: Creating Inclusive Child Care Option Behavior Plan - Stop! Alex's Gift: Belonging From First Interest Area: Early Childhood Strand Interest Area: Positive Approaches Grade to Graduation and Peggy Florio, Pamela Miller Larry Douglass Beyond Achieving Inclusion through the Interest Area: Inclusive Education So We're Out There Now, But IEP Advocacy Process What Are We Doing? Blending Cheryl Fisher, Alex Nickels, Achel Nickels, Interest Area: Inclusive Education Community Based Instruction & Tara Todhunter Selene Almazan, Patricia Cox Career Planning Interest Area: Personnel Preparation Strand Alternative Assessment Behavioral Technology in Research Studies Beth McKeown, Julie Marcial, Mary Barnes, Support of Values Patricia Ann Interest Area: Alternate Assessment Interest Area: Positive Approaches Strand Harold Kleinert, Jacqueline Kearns, Gary LaVigna Karen Nowak, Matt Turner, Michelle Slone Person-Centered Planning and Self-Determination Supporting Meaningful Classroom IDEA Mediation: Parents and Participation for Students using a Interest Area: Self-Determination Strand Marijo McBride, Brian Abery Service Providers Working Communication Device Together Interest Area: Communication The Health and Well Being of Interest Area: Family Pam Harris, Pamela J. Harris, Adults with Down Syndrome Greg Abell Stephanie Williams Interest Area: Aging Strand Growing Jobs: The Rural Teaching Students to Support Dennis McGuire Route to Creative Employment Themselves in General Education Interest Area: Employment Strand Interest Area: Inclusive Education Crackerbarrel on Urban Issues Interest Area: Urban Strand Cary Griffin Martin Agran, Carolyn Hughes, Michael Wehmeyer Lou Brown, Alison Ford, Anne C. Smith, Sexuality and Sexual Mark Doyle Expression: Open Forum Making Recreation a Reality: Interest Area: Sexuality Strand Who can do What to Get it Going Ann Heler, Bonnie Shoultz, Wanda Blanchett in Your Community? Interest area: Leisure and Recreation Strand Cindy Burkhour f,

PAGE201;-) TASH Newsletter, September 1999 THURSDAY POSTER SESSIONS

Thursday Poster Sessions

Thursday Kidspaces: Home to Support Positive Peer Pressure: Using Self-Determination for Children Peers to Assist Students with Poster Sessions 1 with Disabilities Special Needs 11:30 ANI - 1:45 PM Interest Area: Self-Determination Interest Area: Inclusive Education Implementing Inclusive Mary Jane Brotherson, Christine Cook Carolyn Auld Education in an Urban Leadership Today Society of Setting Family Resourc Project: Empowerment of Parents of Alberta: Partners in Effective Interest Area: Urban Issues Decision Making Joy Rogers, Mary Lynn Cavey Children with Disabilities Interest Area: Family Interest Area: Self-Determination The Team Approach in an Alan Reiman, Kathy Fitzgerald, Karen Ward Sandra Mak Integrated Kindergarten The Use of Visual Clues in the Class: Teacher Collaboration Supportive Classrooms and the Classroom Interest Area: Early Childhood Quality of Inclusion: A Research Interest Area: Inclusive Education Lori Gackenheimer Study Interest Area: Research Samantha Bortz Representation of Disability Ann Dillenbeck, Wayne Fox Adaptation and Modification in Counselor Education Project Textbooks Providing Services for Families of Interest Area: Positive Approaches Interest Area: Higher Education Children w/ Autism Living in Donald La Faye Nancy Rosenau Geographically Distant Areas Interest Area: Family Autism Moving Out to Move Successful Collaboration: Jennifer Symon, Robert Koegel, Lynn Koegel Forward: How We Do C.B.I. Mid South ACT & the RISE Project Thursday, Interest Area: Community Living Chuck Nachtrab Interest Area: Inclusive Education Poster Session 11 Paul Ayers, Karen Anderson, 3:15 PM - 5:30 PM From Concept to Reality - Tom Buggey Same Window, New View: Print Community Options Conversion Project Wise People Travel to Media and Persons with Discover Themselves! Disabilities Interest Area: Employment and Careers Diane D'Orazio, Kerry Brennan, Dave Interest Area: Independent Living Interest Area: Advocacy Vasa, Andy Phillips Margaret Cantey Sylvia Martin, Susan Catlett Long Term Impacts & The Best of Both Perceptions of Challenging Worlds...lncluding a Seventh Behaviors of Learners with Dual Processes of PBS Grader with Autism Sensory Impairments Interest Area: Research Marilyn Lauer, Lynn Koegel, Erin Interest Area: Inclusive Education Interest Area: Students Who Severely McNerney, Josh Harrower, Robert Patricia K. McDaid Challenge Schools MaryAnn Demchak Koegel Inclusion Project: Parent Mentors Parents Ponder Inclusion Believe in Yourself: The Road to Becoming a Self-Advocate Interest Area: Inclusive Education Interest Area: Family Interest Area: Advocacy Mary Ann Mieczkowski, Kim Trescott, Deanna Horstmeier, Sheri Glasser, Margaret Stout Vicki Spence Stepping Up to the Plate Interest Area: Self-Determination Nancy Myers

8 7 :. PAGE211 TASH Newsletter, September 1999 FRIDAY SESSIONS

Friday, The Spirituality of Friendship A Seven Year Partnership: December 10, 1999 Interest Area: Spirituality Strand A Support Circle Tells Their Story Sue Henshaw Interest Area: Transition Strand 8:00 AM - 9:00 AM Emily Ellis, Carole Gothelf, Eric Doughty, Has Special Education Lost Its Comprehensive Positive Geri Smith, Mary Kay Brown, Moral Bearings? Behavior Supports Incorporating Patrick Russell, Sheila Kresch Interest Area: Personnel Preparation Biobehavior Carl Lashley Interest Area: Positive Approaches Strand Ohio's Self-Determination Craig Kennedy, Kristine Jolivette, Terry Project: How Four Local Pilots Present Away! Developing Long, Travis Thompson Soared Presentation & Facilitation Skills Interest Area: Self-Determination Strand Interest Area: Management Replacing Prelinguistic Behaviors Hap Hinkle, Dana Charlton, S. Hap Hinkle Mary Fitzgerald with Functional Communication Interest Area: Research If It's Day 6 It Must be Middle Preparation of Teachers to Meet Deborah Keen School: Creating an Inclusive Needs of Students w/Severe Middle School Environment Disabilities A Day in the Life Interest Area: Inclusive Education Interest Area: Personnel Preparation Interest Area: Inclusive Education Patricia McDaid, Paula Nargi Denise Clark, Christy Lee Holthaus, Lawrence Lieberman Diane Ryndak Developing Creative Thinking Examining Communicative Skills in Preservice Teachers Research Based ADA Technical Repairs in Young Children Who Interest Area: Personnel Preparation Assistance Maximizing Effective Lack Language Pamela Gent Implementation of Employment Interest Area: Communication Provisions Jim Halle, Barbara Phillips, James Halle, Interest Area: Research Yvonne Carey Susanne Bruyere, Robin Jones Continued on page 23

tothefollowingOfficialSponsorsfortheir supportof the1999 TASH Annual Conference!

City of Chicago Mayor's Office for People with Disabilities www.ci.chi.il.us/Disabilities/

Premier Level Sponsor - $7500 or more

William M. Mercer, Inc. WILLIAM M. www.wmmercer.com Gold Level Sponsor - $5000 or more

National-Louis University www.nl.edu

1886 Gold Level Sponsor - $5000 or more

PAGE 2.2 q TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 22 Systems Change: Staying Afloat Friday, Project RSVP: Expanding in Changing Waters December 10, 1999 Opportunities for Vocational Interest Area: Inclusive Education 8:00 AM- 10:15 AM Rehabilitation Gail McGregor, Christine Salisbury, William Sharpton Future & Special Needs Planning Interest Area: Employment Strand Interest Area: Family Jane Roth, Lisa Jarrett Religion/Faith Crackerbarrel Barton Stevens Let Us Tell You How: Spreading Interest Area: Religion/Faith Strand the Americorps Message of Kim Farrington Subtleties of Person-Centered Self-Advocacy and Self Transition Planning: Mastery Determination Supporting Children with Autism through Process & Accomplishment Interest Area: Advocacy Strand Spectrum Disorders in Typical Interest Area: Transition Strand Laurie James, Bridget O'Donnell, Classroom Settings Interest Area: Autism Strand Denise Ferrara, Craig Michaels Lisa Obrist, Lori Kelso, Scott Wing Cathy Apfel, Rae Sonnenmeier The Making of an Inclusive Teaching and Learning in Teacher Supporting Healthy Sexuality in Multilevel Classrooms Interest Area: Inclusive Education Interest Area: Professional Development Adults with Developmental Catherine Bove, Connie Miller, Dave Rice, Strand Disabilities Interest Area: Criminal Justice Strand Lori Eshilian Kelly Aramaki, Anna Whitcsel, Ellen Rice, Jane Hill, Sue Thomas Terri Pease Individual Supported Navigating the Medical Mine Field Four Year Evaluation of Employment in King County: An In-Depth Anaylsis Interest Area: Advocacy Strand Louisiana Home of My Own Project Interest Area: Community Living Strand Interest Area: Employment Strand Deana O'Brien Phil Wilson, Jane M. Everson, Kirh Lyle Romer, Beth Aigbe, Ray Jensen Anderson, Michael Rando, Nancy Robertson Continued on page 24

Emma Rose Sch Funds Available for FREE! Disability Attend the TASH Con7 Resource Catalog Through the generosity of the Jacobs pleased to announce the creation of the Emma ROse^'_ Scholarship Fund. The purpose of the scholarship fundis to VIDEOS SOFTWARE CD-ROMS foster the growth of parent advocacy and activism by honoring two parents each year who have made a difference in the lives of people with disabilities. NEW 1999 Catalog lists over 100 resources We are accepting nominations (self-nominations are for staff development and shills training for encouraged!) for this year's scholarship. Scholarship people with disabilities. Includes award recipients will have their conference registration fee waived winning videos, software, books and board and their travel and hotel expenses will be covered. Scholar- ship recipients will be invited to present at the TASH games on employment, inclusion, transition, conference. Recipients are asked to commit to raising $200 advocacy, disability awareness, sex ed., annually for the next two years toward the continuation of the scholarship fund. This year's scholarship recipients should friendmaking, and more. be willing to participate in selecting next year's recipients. To apply, send a letter describing why you or the person Write PDA TASH Free Catalog, you are nominating should be selected for this honor. Letters should be received by October 15th. Send to: Nancy Weiss, P.O. Box 2038, Syracuse, NY 13220-2038 TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Letters also can be sent by e-mail or call 800-543-2119. ([email protected]) or fax: 410-828-6706. For questions, call Visit Our All New Updated Web Site @ Nancy at 410-828-8274, ext. 101 Donations for the Emma Rose Scholarship are being WWW. PDASSOC.COM accepted and can be made to TASH at the address above.

BEST COPY AVAILABLE PAGE 23 139 TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 23 Doing Inclusion: When a Child Infusing Self Determination into has Severe Health Care Needs Self-Determination for Infants, Personnel Preparation Interest Area: Special Health Care Needs Toddlers, & their Families Interest Area: Self-determination Strand Strand Thomas Holub, Courtney Moffatt, Interest Area: Family Strand Cynthia Levine, Arlene Lockenwitz, Caitlyn Ellen Browning Mitch Kremer Foley, Cindy Balboni, Jim Kane, Joan Quinn, Joe Dupelle, Rhonda Majhowshi How Big is Your Circle? A Model for Deciding Whether a Student Needs Paraeducator Interest Area: Creative and Performing Arts Autism, Personhood and Self: Support Jeff Moyer One Woman's Story Interest Area: Paraprofessional Interest Area: Ethics/Rights Never Take Physio-Therapy from Michael Giangreco a Therapist on a Diet! Sally Young, Carolyn Nuyens, Sandra Radisch Adapting the Curriculum in the Interest Area: Ethics/Rights Inclusive Setting Using Assistive Norman Kunc, Emma Van der Klift Awakening the Sleeping Giant in Technology the New Millenium: People with Interest Area: Assistive Technology Moving to Inclusive Services in Disabilities. Their Voting Rights, Chicago Schools Randi Agetstein, Rick Metheny, Sheree Witt, Political Voice, and Electorial Terri Crawford Interest Area: Urban Strand Opportunities Ruth Henning, Sharon Freagon, Sue Gamm, Interest area: Governmental Affairs A Continuum of Natural Support Yvonne Williams Lawrence Gorski Strategies Involving For All Abilities Interest Area: Employment Strand Janis Chadsey, Debra Shelden Interest Area: Leisure and Recreation Friday, Cindy Mayes, Nichi Compton December 10, 1999 9:15 AM- 10:15 AM Assessment and Intervention for Sleep Disorders Interest Area: Positive Approaches Strand Robert Horner, Craig Kennedy, Mark All1101111C111q the Harvey, V. Mark Durand The Power of Teaching TASH Conference Yearboo Interest Area: Professional Development Strand 1999 will be the inauguration the TASH Yearbook. The Yearbook will be a Freddie Vaughns compendium of selected articles describing many of the conference presentations. A yearbook differs from conference proceedings in that a yearbook is a selection.of Preservice and Inservice articles on sessions thacwill be of-Most interest to TASH members and. others; rather Education in Urban Settings

than a compilation of al-tides on all.Sessions presented.. : Interest Area: Personnel Preparation The material will bea kith integrateS and summarizes the information ...... presented in each session approved for inclusion. Itmay be a written manuscript, Mary Falvey, Jennifer J. Coots, Marquita photo(s), a poem, a deScriptionof a'persOnal experience, a combination, or ariy Greynot-Sheyer other format that lends itself to.piiblication: The goal is to compile a book that includes a range of materials that are reflective of the full range of iopics of interest Related Services in Inclusive to the TASHaudience.. ;:.- , Schools: Exploring a Primary Session chairpersons are invited to subrint written material for the Yearbook. Therapist Model The article is due to the TASH Central office by Mondayjanuary..17th (however,we . recornmend.you submit It print to ihe'COrifirenceif.pOssible), Submitted articles Interest Area: Related Services must not have been publiShed previously in thiS form and should -reference previous Beverly Rainforth publication of any of the information. All articles will be sent to at least three reviewers. Final decisions about inclusion in the Yearbook will be made by co- Demanding Our Place at the editors Douglas Fisher, Ciaig Kennedy, and Barbara Buswell. Decisions will be based on the ratings of reviewers. Table: Learning to Make a The Yearbook will be available for pre-sale at a reduced rate of $25.00 in Difference conjunction with conference: registration. Individuals attending the 1999 conference Interest Area: Advocacy Strand can indicate on their conference registration form an interest to order.one or-more Laurie Kimball, Victoria Wood copies of the Yearbook Payment will be made along with payment for conference registration. Individuals who do not attend the conference can order the Yearbook for $35.00. If you have any questions about a submission to the'1999 TASH Yearbook, please contact Doug Fisher at 619-594-2507 or [email protected]

Continued on page 25 .: PAGE 24 1 90 TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 24 The Great Lessons of the 20th Inclusive Education: Proven Keeping the Spirit: Processes for Century Techniques for Every Motivation & Renewal Interest Area: Management Classroom at All Grade Peggy Gould Interest Area: Spirituality Strand Levels Carole Gothelf, Cindy Ruetsch, Interest Area: Inclusive Education Jerry G. Petroff Safety and Your Rights Patti McVay, Andrea Guard, Barbara Interest Area: Advocacy Strand Jorgensen, Heidi Wilson, Joan Medlen Building Linkages between Cha Pope, Cherie Tessier, Dale Colin, Diana Assessment and Instruction Robishaw, Michael Raymond Supporting Diversity in Interest Area: Inclusive Education Personnel Preparation: Jan Writer Enhancing Community Living of Inclusive Co-Instruction Persons with Cultural and Interest Area: Personnel Preparation Use of Person Centered Planning Linguistic Diversity Debbie Gilmer, Alan Kurtz, for Transition Planning: A Interest Area: Community Living Strand Dennis Stubbs, Kathy Son, Lenny Berry Research Study Ming-Gon John Lian, John Donnelly, Marbella Marsh Interest Area: Transition Strand Early Childhood Brigid Flannery, Rob Horner Crackerbarrel Preparing Personnel to Offer Interest Area: Early Childhood Strand Applying the Technology: Choice & Enhance Participation Elizabeth Erwin, Beth Brennan Overcoming Challenges to in Community Meaningful & Effective Inclusion Interest Area: Personnel Preparation Including People with Karena Cooper-Duffy Interest Area: Inclusive Education Disabilities in Faith Chris Oliva, Donna Lehr, Edna Barenbaum Communities Interest Area: Religion/Faith Strand Kim Farrington

Visually Impaired Modifications for Sensory Birth Crisis Sensitivities and Movement Classroom Videos Differences LMD. Interest Area: Autism Strand Feeding Infants Cathy Apfel, Rae Sonnenmeier School Safety Children with special Tracheostomy Rethinking the Death Penalty needs are our business. for People w/Mental Down Syndrome LMD offers the best in Retardation: A New Global health and Inclusion in Schools educational media Perspective Interest Area: Criminal Justice Strand Communication for those serving infants, toddlers, Billy Edwards Hearing Impaired school-aged Medications at School students and Friday, Home Visiting young adults December 10, 1999 with Parenting special 12:15 PM - 1:15 PM Universal Precautions needs How Individuals with Autism and their Violence Prevention & Other Neurological families. Disabilities Manage: Managing Behavior Approaches and Strategies Interest Area: Self-Determination Marjorie Olney Look for our catalogue: www.lmdusa.com I Should've Been in Pictures! Creating Student Portfolios Learner Managed Designs Interest Area: Inclusive Education P.O. Box 747 Mary Fitzgerald, Eve Cugini,Melissa Visit our booth in Lawrence, KS. 66044-0747 Chicago at TASH 99 Phone: 1-800-467-1664 Steed

Continued on page 26 BEST COPY AVAILABLE, 191 PAGE 25 TASHNewsletter,September 1999 FRIDAY SESSIONS

Continued from page 25 Listening to Individuals Who Do The Family Network Project: Not Use Words to Communicate Providing PBS to Families from Inclusion and Eys? Social Skills Interest Area: Communication Underserved Communities for Students with Pervasive Vicki Genits, Bonnie McLellan, Deb Interest Area: Positive Approaches Strand Developmental Disorders Buckingham. Kathy Gilman, Linda Wiger, Bobbie Vaughn, Glen Dunlap, Lise Fox Interest Area: Inclusive Education Sarah Pittner Susan Catlett It's My Turn in the Community Importance of Including Families Interest Area: Early Childhood Strand University Partnerships to in Interdisciplinary Personnel Michelle Padilla, Daneen Ruski Support Collaboration, Preparation Co-Curricular Planning & Interest Area: Professional Development Expanding Inclusive Schooling: Co Teaching Strand Activities and Partnerships for Interest Area: Urban Strand Jan Moss, Anita All Systematic Change Toni Strieker, Betsy Bachman, Colleen Interest Area: Inclusive Education Arnold, Constance Goodson, Ginger Joyce, Your Visions Can Come True Ann Halvorsen, Deborah Tweit-Hall, Dona Gwen Benson, Janice Monk, Kim Rostiek, Interest Area: Self-Determination Strand Meinders, Jacki Anderson, Linda Lee, Mary Susan Jacob Nancy Baesman, Bill Baesman Falvey, Nancy Franklin, Pamela Hunt

Inclusion in Social/Political Inclusive Music Activities: Hilarity Therapy Activism Making Everyone Part of Music Interest Area: Management Interest Area: Advocacy Strand Making John Irvin Maria Timberlake Interest Area: Creative and Performing Arts Mara Sapon-Shevin, Mayer Shevin Creating Inclusive Schools in an Alternative Treatments for Urban School District: A Seizure Disorders Finding Your North Star: Self- Collaborative Approach Interest Area: Special Health Care Needs Determination & Planning Interest Area: Inclusive Education Strand Alternative Tomorrows with Ellen Rice, Cathy Rikhye, Celia Oyler, Janice Lawrence Lieberman Hope Payne, Melissa Price Interest Area: Community Living Strand The Collaborative Problem Linda Seidman, Christine Crescente, Self-Advocates' Maximixing their Solving/Mutual Teacher Support Marilyn Casey, Tina Mazurkiewicz Roles as Board Members (CPS/MTS) Interest Area: Advocacy Strand Interest Area: Personnel Preparation Parent Training & Information Tia Nelis, Essie Pederson David Westling, Karena Cooper, Kathy Centers as Collaborators in Blossfield Advocacy & Empowerment Guardianship: Last Civil Rights Interest Area: Family Frontier Use of FM Assistive Listening Charlotte Des Jardins, Judith Raskin, Terri Interest Area: Guardianship Strand Devices Dawson Dohn Hoyle Interest Area: Assistive Technology Barbara Franklin Sister Act: Advocacy Begins in Alternatives in Criminal Justice Childhood for People with Developmental Observational Leisure Learning Interest Area: Family Strand Disabilities in Community-based Residential Nancy Verderber, Katie Stollhans Interest Area: Criminal Justice Strand Settings James McAfee Interest Area: Leisure and Recreation Raising Our Voices: Maine's Maureen Wall, Stephanie Kouzoukas Youth Leadership Initiative Using Visually Enhanced Interest Area: Transition Strand Materials to Support Lifespan Respite: Respite Across Debbie Gilmer, Bonnie Robinson Elizabeth Communication the Ages DePoy, Janet May Interest Area: Autism Strand Interest Area: Governmental Affairs Strand Cathy Apfel, Rae Sonnenmeier Nancy Olson Surviving the Education System: A Success Story Friday, Using Cohort Groups to Improve Interest Area: Inclusive Education December 10, 1999 Teacher Performance Dick Hosty 12:15 PM - 2:30 PM Interest Area: Personnel Preparation Jimmie Phillips, William Sharpton 192 Continued on page 27 BEST COPY AVAILABLE PAGE 26 TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 26 Functional Assessment with Rural-Urban Whole Schooling Spiritual Beliefs and Response To Parents to Increase their Research Project Disability: Inclusion into Children's Social Communication Interest Area: Research Christian Churches Interest Area: Early Childhood Strand Kim Beloin, Holly Feen, J. Michael Peterson, Mark Larson Interest Area: Religion/Faith Strand Joanne Suomi, Paula DeHart, Rich Gibson Linda Treloar Friendship on the Electronic Welcome to Our Home: Self-Determination, Curriculum, Playground: Observations of Individualized Housing Technology, and Transition Inclusive Computer Play Alternatives in New York State Interest Area: Leisure and Recreation Interest Area: Transition Strand Interest Area: Independent Living Tim Hobbs, Cheryl Astolfi, John Sanko, Lori Mary Held, Karen Thomas Laurie James, Karen Bradley, Martha Bruch, Sally McCullon O'Grady, Sanrose Shaw The Work Incentive Transition Network: SSI and Transition Age Finding Identity in Children's Life in the General Education Youth Literature: Voices & Culture Classroom: Type & Degree of Interest Area: Employment Strand Images Participation Sheila Fesko, Ellie Emanuel, Helena Haas, Interest Area: Inclusive Education Interest Area: Inclusive Education John Butterworth, Vicki Brooke, William Valerie.Owen, Junko Yokota Sandra Alper, Martin Agran Halloran WANTED: Two Million Teachers Making Self-Determination Real: 'Spirituality, Bioethics & Interest Area: Professional Development Stomping Out Barriers Disabilities Strand Interest Area: Self-Determination Interest Area: Spirituality Strand Janice Payne, Charles Fitzgerald B.J. Bertrand William Bueche Self-Determination: Scott's The Myth of Science in Social Natural Supports in the Work: Perspective on Working and All Science: Exemplifying Facilitated National Studies of That Jazz Communication Organizational Practices Interest Area: Self-Determination Interest Area: Communication Interest area: Employment and Transition Christine Bevilacqua, Jacqueline Fowler, Don Cardinal David Mank, Patricia Rogan, Becky Banks Scott Fowler, Walter Fowler Linking Outcomes Based Teacher Friday, Partnerships Make Self- Preparation to the Portfolio December 10, 1999 Determination Work: A Model in Assessment Process New York State Interest Area: Personnel Preparation 1:30 PM- 2:30 PM Interest Area: Self-Determination Mary Beth Doyle Civil Rights and the Media: Trudy Fletcher, Clint Perrin, Janet Austin, Getting the Story Right Steve Holmes Creating & Supporting Systemic Interest Area: Governmental Affiars Strand Change in Urban Schools Michael Reynolds, Jill Jacobs Unifying General Education & Interest Area: Urban Strand Special Education Resources to Ellen Rice, Deborah McKnight, Janette Mixed Voices: A Training Support All Students Hernandez Program on Inclusion for Board Interest Area: Inlcusive Education Participation Pam Hunt, Annette Jenkins, Brian Wills and Trusts Interest Area: Advocacy Strand Chapman, Darlene Hardin, Judy Alexander, Interest Area: Guardianship Strand Donna Lowary Pat Saddler, Phoebe Diamond Joel Wellber, Dohn Hoyle, Patricia E. Dudek

The Role of the Family Advisor in Cooperative Learning and Is the ADA Still Good Law? And Supporting Parents in Obtaining Inclusion: Learning and Playing How is it Being Used in the Inclusive Education Together Criminal Justice System? Interest Area: Inclusive Education Interest Area: Inclusive Education Interest Area: Criminal Justice Strand Judith Terle, Beth Wanger Mara Sapon-Shevin Barbara Ransom, Frank Laski,

Partner Power: The Next Legal and Educational Generation Responsibilities of Schools for the Interest Area: Advocacy Strand Provision of Health Care Services Jopie Smith Interest Area: Special Health Care Needs Strand Donna Lehr, Jill Greene Continued on page 28 REST COPY AVAILABLE PAGE 27 193TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 27 What's Really Happening in the Open Hearts, Open Minds, Open Community? Second Generation Doors: Inclusion in Faith Teaching Social Skills in Problems in Rural Maine and Communities Collaboration with Families Urban Louisiana Interest Area: Religion/Faith Strand Interest Area: Autism Strand Interest Area: Management Joanne Meyer Cathy Apfel, Beth Dixon, Rae Sonnenmeier James Meehan, Gail Fanjoy, Jeffrey L. Strully Integration in Employment RSA Choice Grants - Lessons Settings: Implementation and Learned Advance Directives: Peril & Research Issues Interest Area: Self-Determination Strand Promise Interest Area: Employment Strand Hank Bersani, Michael Callahan Interest Area: Ethics/Rights Keith Storey, Denise Mautz, Teresa A. Grossi Rita Marker Friday, Emerging Practice in Consumer December 10, 1999 Self-Determination - The Contracts to Maximize Choice 1:30 PM- 3:45 PM Michigan Experience and Authority Interest Area: Self-Determination Strand Maximize Choice and Pathfinders: School to Sylvia Kloc, Cheryl Polite, Kristine Interest Area: Self-Determination ala New York Community Life Copeland, Michael J Head Roy Gerstenberger, Mark Mills City Interest Area: Transition Strand Setting up a Deaf Education You're a What? The Role of the Fredda Rosen, Beth Mount Carolann Program in Public School Inclusion Facilitator at Granata, Connie Lyle O'Brien, Interest Area: Inclusive Education Elementary and Middle School Debbie La Mothe Ann Scherff Interest Area: Inclusive Education Pokey Bolton, Patricia McDaid Legislator's and Parent's Forum Journey of a Lifetime...Beginnig Interest Area: Family Strand with the End in Mind Self-Regulation Strategies JoAnn Herzberger, Dennis Hastert, Henry Interest Area: Early Childhood Strand Interest Area: Autism Strand Hyde, Peter Fitzgerald, Richard Durbin Karen Gaffney Cathy Apfel, Rae Sonnenmeier

Bigger is Better: Mediating Membership Revitalized in a Friday, Challenging Behavior Through Voluntary Association December 10, 1999 Social Supports Interest Area: Advocacy Strand Interest Area: Positive Approaches Strand 2:45 PM - 5:00 PM Rick Tutt Kimberly Smalley, Cindi Avanzino Nothing About Me Without Demonstrating the Co-Teaching Interest Area: Advocacy The Needs and Strengths of Model in Action in an Urban Michael Bailey, Cindy Helvington, Jill Flynn, Families Multi-Cultural Education Setting Judy Cunio Interest Area: Family Strand Interest Area: Urban Strand Bob Manwaring, Janet Forbes, Zana Marie Mark Doyle, Peter Zimmerman The Last Resort: Hitting Home Lutfiyya Runs in Due Process Including Students with Interest Area: Advocacy Strand Transforming Community Asperger's Syndrome: A Mark Partin, Linda Rammler through Creative Arts and Workshop for Elementary Theater Teachers The Pennsylvania System of Interest Area: Creative/Performing Arts Interest Area: Inclusive Education Alternate Assessment Strand Russell Johnston Interest Area: Inclusive Education Amy Roth, Emily Anderson Steven Lyon, Donna Lehr, Elisabeth Healey, Lessons in Transition Naomi Zigmond A Little Session on Person Partnerships: An Innovative Centered Planning School District/University Ways of Constructing Lives and Interest Area: Community Living Strand Relationship Disabilities: The Case for Open Marsha Forest, Jack Pearpoint, John O'Brien Interest Area: Transition Strand Inquiry Dawn Hunter, Jan Mower Interest Area: Research Friday, Scot Danforth, Ellen Brantlinger, Lous December 10, 1999 Teacher Preparation: Strategies Heshusius, Phil Ferguson, Steven Taylor 2:45 PM - 3:45 PM to Promote Successful Inclusion Interest Area: Professional Development Strand Continued on page 29 Gay Culverhouse BEST COPYAVAILABLE PAGE 2819 4 TASH Newsletter, September 1999 FRIDAY SESSIONS

Continued from page 28 Why Not Have a Job? The ABC's Searching for Success During of the Workforce Transition: Developing Success Statewide Alternate Assessment: Interest Area: Employment Strand Identities among Urban IEP Objectives Drive Portfolio Joseph Pichler Adolescents Evidence & Interest Area: Transition Strand Interest Area: Personnel Preparation The Dynamic Building of Family Sarah Johnston-Rodriguez Sarah Kennedy, Michael Burdge Involvement into Best Practices Interest Area: Family Indexing Community Risk for Using Video: Creating Culture, Susan Catlett, Mary Lasater Treatment of Sexual Deviance Breaking Barriers, Interest Area: Criminal Justice Interest Area: Self-Determination Supporting Students with Autism Karl Pfeiffer Karen Ward Ryan Geake, Debbie Reid Spectrum Disorders in General Education Settings Teaching Collaborative Preserving Families: Keeping Interest Area: Strand on Students Who Negotiation Skills to People with Medically Fragile Children in Severely Challenge Schools Disabilities & Others in their their Communities Cathy Pratt, Margaret Lang Lives Interest Area: Special Health Care Needs Interest Area: Self-Determination Strand Self-Determination: Are we Dave Black, Jackie Henderson, Lyle T Arlene Lockenwitz, Eileen Lee, Kathy Ryan, Meeting the Needs of Diverse Romer, Michael Etzell Patricia Luce, Trina Bingham Learners? Interest Area: Self-Determination Strand Social Reinforcement & Honoring the Journey: The Colleen Thoma, Douglas Fisher, Environmental Modifications as Spiritual Dimensions of Person- Mary Givens Sole Elements in Behavioral Centered Planning Intervention Interest Area: Spirituality Strand Included Students = Isolated Interest Area: Positive Approaches Strand Craig Michaels, Denise Ferrara Parents? Frank Marone, Teresa Gallegos Interest Area: Inclusive Education Guardianship Crackerbarrel Lynne Tamor, Shari Krishnan Picturing Change: The Use of Interest Area: Guardianship Strand Case Studies for Inclusive Mayer Shevin Utilizing Arts Activities to Teach Teacher Preparation Disability Awareness Interest Area: Professional Development Crackerbarrel on Policy Issues in Interest Area: Creative and Performing Arts Strand Supported Employment and Transition Heather Downey Mary Fisher, Debbie Staub, Jennifer J. Coots, Interest Area: Employment Strand Marquita,Stacey Minondo, Mike Callahan The Education of Eugene Marcus: Jowonio means to Set Free Judith Snow: 50th Birthday Responding to Trauma in Adults Interest Area: Autism Strand Celebration with Developmental Disabilities David Marcus, Eugene Marcus Interest Area: Community Living Strand Interest Area: Criminal Justice Strand Marsha Forest, Jack Pearpoint, John W. Terri Pease Social Interaction & Peer O'Brien, Judith Snow Acceptance in Inclusive Classrooms: Creating Creativity Maximizing Social Benefits Ideology & "Best Practices" for Interest Area: Management Interest Area: Inclusive Education Young Children Labeled with John Irvin Keli Mu, Ellin Siegel-Causey Autism Interest Area: Early Childhood Strand Friday, How to be an Involved Parent Alicia Broderick December 10, 1999 without being Used, Abused and Burned Out Team Teaching in an Inclusive 4:00 PM - 5:00 PM Interest Area: Family Strand Setting: Four Key Areas that Can Planning for the Future of Your Child Rhonda Best Make the Difference Interest Area: Advocacy Interest Area: Urban Strand Nadine Vogel Advocacy-in-Action: Strategies Karren Ray, Edward Patoch for Building Active Grassroots Bridging the Gap between Support & Alliances Special Education & Vocational Interest Area: Advocacy Strand Rehabilitation Rebecca Salon, Germaine Payne, Lucius BEST COPYAVAILABLE Interest Area: Transition Strand Mangru, Jr., Phyllis Holton, Ricardo Laura Owens-Johnson, Sarah Johnston Thornton, Robert Kennedy, Jr PAGE 29 195 TASH Newsletter, September 1999 Friday Poster Sessions

Friday Providing Transitional Poster Session III Psychosocial Rehab Services to Including All Children in 12:15 - 2:30 PM Young Adults w/ Emotional Kindergarten through Disturbances Collaborative Transition Effective Paraprofessional Interest Area: Transition Planning Programs Kate R. Donegan, Harry Carson Interest Area: Inclusive Education Interest Area: Paraprofessional Jane Ross-Allen, Wayne Fox Diana Johnson Prevention & Intervention in Sexual Abuse/Assult w/ Persons Global Connections Identifying Instructional with Significant Disabilities Interest Area: Multicultural Strategies that Increase Interest Area: Sexuality Mary B. Stauffer, Vasu Babu Choice-Making, Melissa Darrow Engleman, Malaika King- Independence, & Self- Albrecht The Philadelphia Inclusion Determination Network: Welcoming All Interest Area: Self-Determination Intervention for Severe Behavior Children Edward Grasso Problems in an Inclusive Setting Interest Area: Early Childhood Interest Area: Positive Approaches Lillian M. McCuen Empowerment from Within: Stephanie Peck, Barbara Nicolai How to Develop a Mentoring Effects of Increased Choice Program in Your Agency that Louisiana's Self-Determination Opportunities on Staff- Really Works! Research Project Initiated vs. Self-Initiated Interest Area: Personnel Preparation Interest Area: Self-Determination Behavior Terrence Clinkscales, Martin Cottman, Dalun Zhang Interest Area: Self-Determination Christina Bachman, Michelle Spar ling Lillian Staten Will I be Alone When I Graduate Use of Within-Activity from School? Community Calendar Choices to Reduce Children's Interest Area: Transition/Research Planning Challenging Behavior Hyun-Sook Park Interest Area: Leisure and Recreation Interest Area: Students Who Severely Teresa Callahan Challenge Schools Friday Christine Cole, Tara Skibitsky Poster Session IV Video Self-Modeling 2:45 PM- 5:00 PM Interest Area: Self-Determination Transition of Students with Beverly Tallman Severe Disabilities from Using Technology to Promote Elementary to Middle School Collaboration in Preservice Barter, Borrow, and Budget: Interest Area: Inclusive Education Programs Creative Approaches to Paula Nargi Interest Area: Personnel Preparation Community Participation Janis Chadsey, Suzanne Lee Interest Area: Research Tri-State Consortium on Joanna Royce-Davis Positive Behavior Support How Teacher Education Interest Area: Positive Approaches Standards Challenge Social Inward-Bound for the Tim P Knoster, Jeannine Brinkley, Justice & Diversity Mothers of Children with Don Kincaid, Carol Schall Interest Area: Personnel Preparation Significant Disabilities Valerie Owen, Terry Smith, Interest Area: Family Teaching and Learning for Paula Neville Margaret Stout, Barbara Simon Inclusive Schools in New Zealand Interest Area: International Inclusion Joya Carter

PAGE 30 1V6 TASH Newsletter, September 1999 1998 CONFERENCE EXHIBITS

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CIS C It lath 115611 LMD, The Special Kid Company 999 Moving Solutions *National-Louis University (Official WV' The TASH Conference promises Sponsor) fx, to be the place to host over Peak Parent Center 2,500 of your customers! Each Project RSVP: Birch and Davis Special Needs Project exhibitor will receive three conference Super Duper Publications registrations, a complete booth package, *The Chicago Mayor's Office for People TASH discounted hotel and airline rates, with Disabilities (Official Sponsor) and the opportunity to capture an The Council on Quality and Leadership audience interested in the innovative The Nth Degree services, products, and information Trips, Inc. 1-.435,0 available to assist people with disabili- *William M. Mercer, Inc. (Official ties from around the world. And we are Sponsor) offering a new value-added feature to the exhibitor package this year: your Added exhibit features to maximize company name, booth number, and a traffic in the Exhibit Hall: list of up to five products or services on Exclusive exhibit time each day of the conference TASH's web site at no extra cost! Conference Registration and Information Plan to join us in the Exhibit Hall areas located in the Exhibit Hall for our Grand Opening Reception on Opportunities for exhibitors to display, Wednesday, December 8, 1999 from discuss or demonstrate products to 5:00 PM to 7:00 PM. conference attendees in the Special The Exhibit Hall will be filled with Presentation Area exhibits of the products, publications Food service in the Exhibit Hall and services TASH conference attendees Poster Sessions and Special Speakers To obtain an application or are looking for. There will be drawings Area held in the Exhibit Hall throughout for exciting door prizes in the Exhibit the conference for more information contact Hall each day of the conference. We Rose Holsey at welcome back many vendors familiar to our attendees, and we are pleased to Exhibit Schedule 1-800-482-8274, ext. 100, or have many newcomers joining us in Exhibit Set-Up: e-mail: [email protected] Chicago. Plan to do your holiday Wednesday, December 8, 1999 shopping with us! 12:00 PM - 5:00 PM Some of the many exhibitors to be Opening Reception: seen at the 1999 TASH conference Wednesday, December 8, 1999 include: 5:00 PM - 7:00 PM* Attainment Company Aurora Ministries exhibit Hours: Autism National Committee Bookstore Thursday, December 9, 1999 & Herb Lovett Foundation 7:30 AM - 9:00 AM* Brookes Publishing Company 11:00 PM - 6:00 PM Human Policy Press, Center on Human Friday, December 10, 1999 Policy 7:30 AM - 10:30 AM Diverse City Press 1:00 PM - 7:00 PM (5:30 PM - 7:00 PM*) DynaVox Systems Saturday, December 11, 1999 Global Ideas, Inc. 7:30 AM - 12:00 PM Inclusion Press (7:30 AM - 8:00 AM*) International Rett Syndrome Association exhibit Breakdown: Issues in Developmental Disabilities Saturday, December 11, 1999 (University of Wisconsin-Madison) 12:00 PM - 5:00 PM Life Planning Services *Exclusive Exhibit Hours

PAGE 31 1 9.7 TASH Newsletter, September 1999 SATURDAY SESSIONS

Saturday, From Emergent to Conventional W December 11, 1999 Literacy Using Dynamic Display 8:00 AM - 9:00 AM AAC Systems Interest Area: Inclusive Education Success for All Students: Amy Staples, Leonore Supporting Parents and Teachers Interest Area: Inclusive Education Saturday, Pam Dillion, Candee Basford, December 11, 1999 Cathy Heitman, Martin Oppenheimer, Robert Snyder 8:00 AM- 10:15 AM Embracing Our Purpose: A Advocacy - A Life Experience Spiritual Look Interest Area: Advocacy Strand Interest Area: Spirituality Strand John Russ, Jonathan Ellis Kathryn O'Connell Be Seen at The Mentoring Project: Virtual Whatever it Takes: From Family Problem Solving for Special Support to Self Determination the TASH Education Interest Area: Family Strand Interest Area: Professional Development Marilyn Kuna Media Strand Tim Hobbs, Lee Sebastiani, Tony Russo Literacy Instruction for Individuals with Severe Festival! Creating an Army for Self- Disabilities: Linking Language, Do you have a fantastic video Determination Literacy and Life that you'd like to market to the Interest Area: Self-Determination Strand Interest Area: Inclusive Education TASH audience? A video that Clint Perrin, Chester Finn, Steve Holmes, Susan DeLuke depicts inclusive lives and Tony Phillips experiences of people with Community Living - Community disabilities; instructs parents or Stories to Inclusion: An Evolution Relationships professionals who support people to Success Interest Area: Community Living Strand with disabilities; demonstrates Interest Area: Urban Strand Denise Neushwander-Frinh, Sandy Zeidler school and community inclusion; Benjamin Walker, Kathy Chapman or addresses specific training Inclusion is More Than 10 Easy needs or current issues? If so, Standards: Creating Curricular Steps now is the time to take advantage Expectations Interest Area: Inclusive Education of the opportunity to show your Interest Area: Standards & Assessment Nicole Straight video to over 2,500 TASH Strand conference attendees. Nancy Frey, Douglas Fisher Providing Positive Behavior & The TASH conference Community Based Supports to attracts an incredibly diverse Changing to Collaborative Youth with Autism group of people with disabilities, Service Delivery for Students Interest Area: Positive Approaches Strand parents, advocates, administra- with Learning Disabilities Sara Woolf, Laurel Ross tors, educators, professional, and Interest Area: Inclusive Education community members who are all Amy Donnelly, Paul Rhodes, Sandy Burton Teamwork for Students with concerned with rights, equity, Inclusive Placements and full participation in the lives The Wilbarger Technique in the Interest Area: Transition Strand of people with disabilities. Classroom Naomi Law, Carolyn Effgen, David Effgen, For only $119.00 per video, Interest Area: Research Maureen Pyne, Patrick Schwarz, we will show your film in the Samantha Bortz Valerie Barnes TASH Media Festival, and give you a free 1/4 page ad in the conference program free.

198 Continued on page 33

PAGE 32 TASH Newsletter, September 1999 SATURDAY SESSIONS

Continued from page 32 Making Funds Follow Philosophy: A Comprehensive Approach to The Art of Rightious Spending Supporting Individuals with Saturday, Interest Area: Self-Determination Challenging Behaviors December 11, 1999 Norm Davis, Bill Allaire, Roger Deshaies Interest area: Positive approaches 9:15 Ah1 - 10:15 AM Paul White, Chris Heimerl Show Me the Money: Consumer A Teacher's Guide to Directed Services Supporting Communicating with Students Self-Determination The RRTC-PBS: Research on who Experience Deaf-Blindness Interest Area: Self-Determination Strand Durable Lifestyle Support Interest Area: Research Interest Area: Communication Leslie Boggis, Gloria Zela Melissa Engleman, Harold Griffin, Glen Dunlap, Anne Todd, Bobbie J. Vaughn, Linda Griffin Professional Development Can Daniel Baker, Hank Edmonson, Be Fun Jared Warren, Lise Fox, Richard Albi, Rob Horner; Steve Newton, Yu-Ching Hsiao Creating Inclusive Communities Interest Area: Professional Development through Children's Literature Strand Reaching My Own Greatness: Interest Area: Inclusive Education Stacy Minondo Mary Fitzgerald, Kate Wilson An Interactive Training on Self- Community Self-Employment Determination Classrooms for All: High Loan Fund: Empowerment & Interest Area: Self-Determination Standards, Accountability and Self-Employment Donna Lowary Inclusive Practice Interest Area: Employment Strand We're People First Interest Area: Standards & Assessment Wayland Roberts, Jeanne Neath, Interest Area: Creative and Performing Arts Strand Kay Schriner Maria Timberlake, Betsy Enright Jeff Moyer Chronicles of Administrative Three High Schools' Experiences Leadership Toward Inclusive Effectively Managing Support Developing Inclusive Practices Education Staff Interest Area: Management Interest Area: High School Inclusive Interest Area: Urban Strand Denise Mautz Education Alice Udvari-Solner, Maureen Keyes Steven Lyon, Becky Knickelbein Self-Advocate Perspective on Students with Disabilities and Community Inclusion for Children Guardianship College: A Crackerbarrel Discussion with Disabilities Interest Area: Self-Determination Interest Area: Inclusive College Education Interest Area: Leisure and Recreation Gayle Gardner Ellen Fennick, James G. Royle Lou Brown, Elisabeth Healey, Ian Pumpian, Managing in an Era of Consumer Lynne Sommerstein, Rita Rubin, Susan From Dreams to Reality Empowerment - Management Rubin Interest Area: Self-Determination Interest Area: Advocacy Strand Paul Selby Max Chmura, Marti Romero-Mitchell , Saturday, Patty Veselsky December 11, 1999 Community Services for People 10:30 AM- 11:30 Ant with Inappropriate or Deviant Page Five of Daily Life of a Sexual Behaviors Person with a Disability Everyone Comes to the Table: An Inclusive Secondary Interest Area: Criminal Justice Interest Area: Independent Living Interest Area: High School Inclusive Karl Pfeiffer, Karen Ward Roberta Hoffman Education Individualizing Education for The Board Resource Center Anne Bauer, Jan Rich, Karen Matuszeh, Mary E. Ulrich Students with Autism: Research Interest Area: Management Issues on Two Models Sherry Beamer, Markus Starford Interest Area: Research The Relationship Between Diane Browder Functional Behavioral Saturday, Assessment & Manifestation An Interview with Siblings of December 11, 1999 Determination Children with Autism 9:15 AM- 11:30 AM Interest Area: Positive Approaches Strand Interest Area: Family Strand Tim Knoster Kathryn Peckham-Hardin 199 Continued on page 34 PAGE 33 TASH Newsletter, September 1999 SATURDAY SESSIONS

Continued from page 33

In Junior High You Take Earth Science: Practical Inclusion Strategies Interest Area: Inclusive Education Ellin Siegel, Carol McMorris This Year? Evaluating Your Professional You can still reach the TASH Audience! Development Interest Area: Professional Development If you are unable to have a booth in the TASH exhibit hall this year, but Strand would like to take advantage of the opportunity to have your books, videos, Mary Lasater brochures, catalogs, or pamphlets distributed or displayed to TASH Confer- ence attendees, then this offer is for you! Training Former Institution Staff Brochures announcing new publications, videotapes, conferences and in Person-Centered Values workshops, or books which are targeted to parents, advocates, professionals, Interest Area: Community Living Strand educators, community service providers, or anyone attending the conference Angela Novak-Amado, Michael R. Fitzgerald are welcome. For $119.00 we will display your product in the exhibit hall! Let's Tango...The Dance of Self- If you would like an application to be part of the Display Table, please Discovery contact the TASH Central Office at 1-800-482-8274. Interest Area: Management Katherine Carol Teaming Within and Across Opening Doors and Creating Exploring "Leisure Time" of Schools: Moving Toward a Learning Opportunities Adults with Moderate or Severe Collaborative Teacher Interest Area: Urban Strand Disabilities Preparation Program Cheryl Crosby Interest Area: Leisure and Recreation Interest Area: Paraprofessional Margaret Hutchins, Addle Renzaglia Mary Fisher, Deborah Taub Practical Ways to Assess and Teach Pre-Language Conversion to Supported Employment Tightrope Walking Without A Communication Skills Interest Area: Employment Strand Net: Discrepancies between the Interest Area: Communication Danielle Thuot, Rita Thuot, Tonda Stillwell Vision & Practice of Inclusion Vicki Gerrits, Bonnie McLellan, Interest Area: Inclusive Education Deb Buckingham, Kathy Gilman, Discovering the Essence of Sue Hamre- Nietupshi, Ann McKee Linda Wiger, Sarah Pitzner Human Beings through Active Listening Creating Links Between An Agreement to Partner-K/resa Interest Area: Multicultural Preservice & Inservice Teachers Consortium and Michigan Roy Scheller via Technical Assistance Rehabilitation Interest Area: Personnel Preparation Interest Area: Transition Strand Inclusive Education & Self- Mary Beth Doyle Beth Steenwyk, Cherrie Stoltzner, Determination: It's More Laurel Jefsen Than Skills Development Saturday, Interest Area: Self-Determination Strand Good Grief! Basic Stages of Grief Mary-Ellen Fortini, Jacqueline Thousand December 11, 1999 10:30 AM - 12:45 PM Interest Area: Family Strand Kathy Kaluza Morris, Guy Morris Proven Winners: Successful No Making Links: The Internet and Cost Ideas to Begin or Expand Self-Advocates Flexible Service Delivery: Inclusive Services Interest Area: Advocacy Strand Meeting the Needs of Diverse Interest Area: Management Rachael Zubal, Loraine Luterbach, Learners James Meehan, Gail Fanjoy Mair Hall, Sandra Cormier, Shelley Trigg Interest Area: Inclusive Education Kathryn Cox, Diane Morrison, Greg Aloia, Effective Parent Advocacy and Mary O'Brian, Richard Swastek Forming Effective Parent Advocacy Groups Interest Area: Advocacy Marie Sherrett Continued on page 35 BEST COPY AVAILABLE 200 PAGE 34 TASH Newsletter, September 1999 SATURDAY SESSIONS

Continued from page 34 Engineering Environments to Support Augmented Communication Interest Area: Family Strand Suzanne Sawka, Christopher Sawka, Once again this year we will be partnering with KiddieCorp to bring youthe quality Josh Harris, Pamela J. Harris Child Care/Club TASH at the 1999 TASH Conference that you have enjoyed inthe past few years. Space is on a first come first serve basis. On the next page youwill find an Alternative Assessment: Ideas application to participate in the program, which must be received no later than November 15, 1999. for Teachers and Parents Please include brief information about your child on the back of the form,including Interest Area: Standards & Assessment any special interests of your child, medicalneeds, or accommodations required. More Strand complete history information will be requested at a later date, however thiswill assist Jacqui Kearns, Amy Wildman, us in preparing safe, and enriching programs. Jean Clayton, Kim Costello, Michael Burdge Club TASH is designed for infants through age 12. Applicability after age12 will be determined on an individual basis. Self-Determination and the Right Childcare will be provided by KiddieCorp, which is licensed and bonded toprovide to Communicate quality care. In addition to the staff provided by the company TASH membersand Interest Area: Communication conference registrants volunteer to assist in Club TASH, making the child toadult Pascal Cravedi-Cheng, Harvey Lavoy ratio very low. Childcare will be located at the Chicago Hilton and Towers, which is theheadquar- Spirituality in the Lives of ter hotel for the conference. Caregivers will beprovided with a beeper to wear Principals & Teachers during the hours your child is participating in Club TASH. This will be at no Interest Area: Spirituality Strand additional cost, however, to protect against loss, you will be required to put a deposit on the beeper. Mary Hickey A full schedule of activities geared to the children who are participating inthe program will be provided. All activities take place on-site.A schedule of activities Saturday, can be provided closer to the conference dates. December 11, 1999 Snacks are provided, however parents must make arrangements for lunch. You can 11:45 AM - 12:45 PM pack a lunch, take your child out to lunch, or make arrangements with thedaycare provider to order lunch through the hotel. New Strategies for Learning Please arrive early the first day to allow ample time for any necessary paperwork Interest Area: Inclusive Education and/or discussion with the staff. Childcare opens at 7:45 each day, except Wednes- Rita Skiles, Jerry Gronewold day, which opens at 8:00. You may sign up for partial days, however there is a three hour minimum. Strategies for Educating Students, You will receive more information with your confirmation letter andrelease fOrms once ages 18-21, on Post-secondary please contact Denise Marshall, Campuses payment is received. If you have any further questions, 410-828-8274 x103 or timarsh@tash,org. Interest Area: Inclusive Education Christine Templet, William Sharpton

A Functional Approach to the Self-Determination: What do School Based - University Design of Proactive Interventions teachers know and how do they Professional Development for Students with Challenging learn it? Interest Area: Professional Development Behaviors Interest Area: Self-Determination Strand Interest Area: Positive Approaches Strand Colleen Thoma, Michael Wehmeyer, Ellen Rice, Jan Valle Jan Writer Paul Selby Supporting People, Not Just Delaware Alternate Portfolio Leadership Agent Teams: Self- Their Behaviors Assessment: Implementation Studies Advocates Serving on Boards Interest Area: Positive Approaches Interest Area: Alternate Assessment Interest Area: Self-Determination Strand Bob Bowen, David Mandt Man, Ann Mieczkowski, KelliAnderson, Shelley Dumas, Anna Escamilla Shaunna Crossen, Suzanne Landmesser Spectrum: A Decade Successfully Inclusive Education in the 90's- Supporting People who One School District's Perspective Challenge the System Interest Area: Inclusive Education Interest Area: Community Living Strand Phil Vedovatti, Barbara Tonev Carol Auer, Aaron Johannes, Ernie Baatz, Mary Jacqueline J. Vivoli, Melanie Dixon Margaret, Shirley Birtwistle, Susan Kurliak PAGE 35 2 01 TASH Newsletter, September 1999 CHILD CARE FORM TASH Child Care Registration Form

Please fill out this form and return to TASH at the address listed below, NO LATER THAN 11/15/99. 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, 1999.

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 8:00-4:30 $ 12/8/99

Thursday 7:45-5:45 $ 12/9/99

Friday 7:45-5:45 $ 12/10/99

Saturday 7:45-1:00 $ 12/11/99

Non-Refundable Reg. Fee $ $5.00 GRAND TOTAL $

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Mail this completed Registration Form and FULL PAYMENT, payable in U.S. Funds, NO LATER THAN 11/15/99 to TASH 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204.

For Office Use Only Amt. Recvd. Amt. Due On Timeline In Comp.

PAGE 36202 TASH Newsletter, September 1999 CONFERENCE REGISTRATION FORM

TOSI1 Conference Mail form to: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore MD 21204 or Fax form to: TASH, (410) 828-6706 Registration Questions? Call: 1-800-482-TASH (8274) Email: [email protected] "TMH 2000: Our Turn Now" TDD (410) 828-1306 Chicago Hilton and TowersDecember 8-11th This form can also be found on our website www.tash.org

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TAW MEMBERSHIP: International International Chapter 0 I am renewing my membership now Mem. # & Chapter Only Only

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. .,,,,4 ,,-,2,., :::.,,,,.---..(0.,.-v,,,:t;:7,.4, 4,1..r.:,,, 74::-.-,o4,,,,:?.:srm.-.:::i:;.,.= ,.. ::-..;.,;;,,r :, , :::,.: , f Y. . ,

Attributes (please circle all that apply) 1. Administrator/Adult Services 11. Legal Services Provider 21.Social Worker 2. Administrator/Education 12. OT/PT 22.Speech/Language Pathologist 3. Administrator/Other 13. Parent/Family Member 23.Special Education Teacher 4. Adult Service Provider/Staff 14. Personal Assistant 24.Support Specialist 5. Advocate/Friend 15. Professional/Public Policy Advocate 25.Staff Development/Trainer 6.Behavioral Specialist 16. Professor/Instructor (College/University) 26.Student (College/University) 7.Case Manager 17. Psychologist List ID: 8.Early Childhood Services 18. Regular Education Teacher/Admin 27.Supported Employment 9. Educator/Teacher (K-12) 19. Related Service Provider 28.Other 10. Government Personnel 20. Self-Advocate i Accessibility and Additional Information Requests 0 Sign Language Interpreter Please indicate dates and times needed. 0 Please list any accessibility/ ADA accommodation needs. (Please note: information about accessibility at the hotel and surrounding vicinity will be available at the information desk on-site) 0 Child Care/Youth Activities (Note: you must fill out an application in advance to register. Space is limited) 0 Roommate Referral Program 0 I would like a mentor to help me get acquainted with the TASH Conference while I am on-site 0 I have been at the TASH Conference before and would agree to be a mentor to help others while on-site .2," PAGE 37 203 TASH Newsletter, September 1999 CONFERENCE REGISTRATION FORM

1999 TOSI1 Conference Registration Payment Information (Includes Opening Reception on 12/8/99 and Conference Activities 12/9-12/11/99)

TASH International Members: . , 0 Individual $219 _ 0 Student $169 ' _ D Parent (non-professional) $ 49 .. ,. . ' . 0 Self Advocate $ 49 , . D One Day Only 0 Thurs LI Fri 0 Sat $119 , .._ . . ' TASH Chapter only or Non-Members: - 4 . ' 0 Individual $329 0 Student $249 0 Parent (non-professional) $ 79 D Self Advocate $ 79 0 One Day Only 0 Thurs 0 Fri 0 Sat $169 Enter Applicable Registration 4 $

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Check Enclosed 0 Purchase Order / State Voucher no. Visa 0 MasterCard 0 Discover Name on Card: Card Number. Exp Date. Signature. PAGE 38 TASH Newsletter, September 1999 2 i)A TASH CONFERENCE

1999 Conference 1999 Local Committee description of thanks Proposal Reviewers Our thanks to the following people for providing invalu- Many thanks to the following people who spent countless hours able information about the local area, for recruiting local reviewing the proposals submitted for this year's conference. presenters and volunteers, publishing this event in local We appreciate your time and knowledge, and truly could not media and most importantly for showing such enthusiasm accomplish such a mammoth task without you! and spirit, both of which will help to make Chicago everyone's kind of town! Rick Amado Maureen Keyes Thank you!! Cathy Apfel Tim Knoster Lynda Atherton Lynda Atherton Ann Kremer Rhonda Best Lynda Baumgardner Valerie Lava Charlotte DesJardins Alan Berger Donna Lehr Theresa Devine Mark Doyle Hank Bersani Angela Levorse Mary Ann Fitzgerald Rhonda Best Ming-Gon John Lian Jane Glodoski Wanda Blanchett Pat Mueller Pam Harris Ruth Henning Beth Brennan Paula Neville Maureen Keyes Lou Brown Vicki Niswander William Kienzle Cynthia Burkhour Liz Obermayer Debra Kunz Mike Callahan Rob O'Neill Janet Ladd Lannie LeGear Julie Carter Janice Payne John Ming-Gon Lian Brian Cox Anna Lou Pickett Tia Nelis Cheryl Crosby Linda Rammler Paula Neville Cathy Nosbaum Dan Dotson Barbara Ransom Valerie Owen Sue Dotson Lee Ann Reynolds-Davis Sheila Ramano June Downing Diane Ryndak Patrick Schwarz Mark Doyle Pat Rogan Paul Selby Mand Segrove Joanne Eichenger Marci Roth Lisa Stahurski Elizabeth Erwin Zuhy Saheed Holly Taylor Alan Factor Brian Salisbury Maureen Wall Lisa Walsh Frank Farrington Caren Sax Manzi Weiss Kim Farrington Mary Schuh Doug Fisher Patti Scott Charles Fitzgerald Bonnie Shoultz Mary Fitzgerald Anne Smith 1999 National Conference Committee Allison Ford Lisa Sonnebom Carol Berrigan Tia Nelis Michael Giangreco Rae Sonnenmeir Douglas Biklen Elizabeth Obermayer Debbie Gilmer Fred Spooner Beth Brennan Linda Rammler Ann Heler Jeff Strully Lou Brown Mary Romer JoAnn Herzberger Carol Tashie Barbara Buswell Susie Schaefer Mat Janicki Alice Udvari-Solner Mark Doyle Mary Stauffer Norris Haring Joseph Wykowski Cheryl Jorgensen Joe Wykowski Elisabeth Healey Lucille Zeph Donna Lehr BEST COPY AVAILABLE 205 TASH NEWSLETTER

Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, . Linda Barnbara Board . diversity and quality of life for children and adults with disabilities. Jdz Healey, President , Kathy Boundy, Items in thisNeWsletter.do not necessarily. reflecrattitudes'held by individual Rbbert Holland members or the Association as a whole. TASH reserves the right to exercise.edi- Doug Biklek Vice PresideM Jay Klein torial judgement in selection of materials. . ;Donna Gilles, Chair of the Executive Commit- All contributors and advertisers are asked to abide by the TASH policy on the tee. Tint Knoster use. of people-first language that emphasizes the humanity of people with dis- Liz Obermayer, Secretary -Debra Kunz abilities. Terms such as "the mentally retarded," "autistic children," and "disabled . Joe Wykowski, Treasurer Ming-Gan Johrr Lian individuals" refer to characteristics of individuals, not to individuals themselves: Nancy Weiss, Executive Director Jorge Pineda Terms such as "people with mental retardation." "children with autism," and "in- Patrick Scluvarz dividuals who have disabilities" should be used. The appearance of an advertise- Jachi Anderson Jacqueline Thousand. ment for a product-or service.. does, not imply TASH endorsement. Michael Auberger

r Referred by: Name: Address: City/State/Zip: Telephone: ( Fax: ( ) E-mail: Is the above your U. work address home address 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/Traiper. ( ) Case Manager () Professor/Instructor (College/University) ) Student (College/University) () Early Childhood Services () Psychologist ( ) Supported Employinent/bayTersonnel. () Educator/Teacher () Regular Education Teacher/Administrator () Other

) I would like to spread my payments out. Moving? Please notify TASH of your new address. Enclose 1/3 and yotrwill receive 2 additional invoicesat.mOnthlyinterYals.. General Membership (individual) $88 ;: If you are applying for a student membership, please provide the following . Agency/business/university/college/library/school $200. information: (alloWs 3 conference attendees at the member rate) Department Self Advocate, Parent, Full Time Student, Direct Careworker/Para professional/Personal Attendant (for whom payment of Full fee would College/University present a hardship) $45. 'Student I.D. Number Family (group rate) $136.. Lifetime Member $1000. -Anticipated year of completion Add.$10 for postage costs for members in Canada and $25 for members . . outside the U.S. and Canada.' ,) Inchide an additional $15 if you are applying for an indiVidual inemberShitt Funds must be submitted in U.S. dollars and checks must be drawn on a U.S: or$30 if yoU are applying for an organizational membership and alSO 'Warn to bank. Add a $20 processing fee if check is not drawn on a U.S. bank. If you become a member of yoUr loCal chapter. would like to charge your membership, please fill in the necessary information: .please make check payable to:TASH . (. ) Mastercard () Visa..( .):Discover ,_ " : ,Address: 29 W. Susquehanna Avenue, Suite 210 Card Number Expiration Date ;Baltimore, MD' 21204 . . Signature Telephone:410/828-8274 Fax: 410/828-6706 L

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BEST COPY AVAILABLE SEPTEMBER 1999 206 PRINTED IN THE U.S.A. ISSUE NUMBER/E0

Human,..,;=.a6.,,gsv:Pi Abus Accessibilit a. -,-,gost ';\ ; .U Is'14k)i4 a FROM THE EXECUTIVE DIRECTOR

TABLE OF CONTENTS first is an effort undertaken by a group of TASH members who have been meeting by phone for several months to discuss From the Executive Director Page 2 concerns about the conditions in Russian Inclusion is Happening ... Where?Page 4 Including People with Mental Disabilities institutions for people with disabilities. within the International Human Rights This group is planning a trip for a small Framework Page 8 number of TASH members to meet with What is Culturally Appropriate? Page 12 family groups in Russia and work on A Toss Up: A Comparison of Accessible ways to assist them to develop alterna- Accommodations Page 18 tives to a lifetime of institutionalization Living Person-Centered Planning in the for their family members. We are Village of Kumbayah Page 20 seeking funding for an initial trip. Six to I'm Not in Special Ed Anymore Page 22 eight TASH members will participate in Independent Living Stories from Latin From the Executive Director the first trip. The major purpose of this America Page 23 BY NANCYWEISS trip will be to meet with family groups in the St. Petersburg region of Russia, begin This edition of the Newsletter is to establish ways that TASH could be about international and helpful to them and design a plan for multicultural issues. TASH is a future exchanges and activities. The richly international organization with planning group is also working on TASH (formerly The Association for Per- members from the United States, getting some resource materials and sons with Severe Handicaps) is an inter- Canada, Puerto Rico, Guam, the Virgin technical assistance devices donated so national advocacy association of people Islands and thirty-eight other countries these can be brought to the family groups with disabilities, their family members, around the world. other advocates and people who work in a gesture of good will on the initial visit. in the disability field. TASH actively pro- Recently we have undertaken two motes the full inclusion and participa- important international efforts. The tion of persons with disabilities in all Continued on page 3 aspects of life.To receive an information 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]. Whom Do I Contact?? For issues of policy, chapter or committee support, or general concerns and MISSION STATEMENT 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, TFISFI 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] 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, Acting Director 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 and inequities; 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: [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 make these and, alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format. Requests for permission to reprintmaterial appearinginthe 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]. PAGE 2 0 8 TASK Newsletter, October 1999 FROM THE EXECUTIVE DIRECTOR

From the Executive Director If you are interested in participating in Continued from page 2 any of the efforts described in this Letter to the Washington Post: article, please contact me by phone (410-828-8274, ext. 101) or e-mail ([email protected]). In addition, I have been meeting with Vou are to be commended for publish- representatives of Mental Disability ". ing the article by Holly Burkhalter Rights International and Physicians for and Eric Rosenthal (8/4/99)on U.S. aid Human Rights to explore opportunities for Russian orphanages (Please see to work together. We've discussed page 10 of this Newsletter for the setting up a meeting among several U.S. article). Children and youth with based disability organizations and key disabilities in Russia deserve nothing less players in the international rights than their American counterparts a movement, including Mental Disability meaningful life in their home communi- Rights International, Physicians for ties, the right to individualized educa- Human Rights, Human Rights Watch tional supports alongside their non-, and Amnesty International, to discuss disabled peers, vocational training the use of aversive procedures and opportunities that will lead to real jobs, restraints. Most of these groups focus and the right to participate in the hinds of their attention on situations outside of recreational, community, and civic the U.S.. The purpose of this meeting experiences enjoyed by their peers. 11111011101111011181. would be to explore ways that the influence of these international rights The U.S. Congress, rather than directing 1110101011 aid toward more humane alternatives, is ?ASHConference organizations could be brought to bear at the1999 on disability rights issues both within considering a bill that would direct the U.S. and internationally. millions of dollars to make Russian institutions bigger and better. One would Join Anne Smith and Zuhy Sayeed for think we would have learned from our the International Inclusive Education own mistakes. For decades, the solution Strand on Thursday, December 9, No amount of money to the problem of U.S. institutions that 1999 as they explore dimensions of can make an institu- did little more than warehouse people inclusion/exclusion around the world. tion a place people with disabilities was to pour money into The Strand will be structured for mould choose to live them. No amount of money can make an interactive discussion. Following brief or that anyone should institution a place people would choose to panel presentations, presenters and have to live. live or that anyone should have to live. participants will respond to focused discussion questions to identify It is sometimes believed that people in the emerging themes around the global United States don't care about people inclusive movements as well as to with disabilities and care even less about highlight activities in various nations Mental Disability Rights International people with disabilities in distant and regions across several continents. and Physicians for Human Rights have countries. The disability rights move- The day will end with some strategic been particularly concerned about the ment in the U.S. is strong and focused. It networking and discussion about how conditions in Russian orphanages and embraces people with disabilities around TASH members can become more institutions (see article on pages 8-10). the world. It is hoped that by publicizing actively involved in international Eric Rosenthal and Holly Burkhalter, this potential misdirection of funds you inclusive education efforts. representing these groups, wrote an Op- will have improved the opportunities for Ed piece that was published in the Russian children with disabilities to stay This strand features a panel of Washington Post in August calling for the with their families, have access to a range dynamic speakers including: Carol United States to rethink its approach to of community supports, and to lead lives Berrigan, Dora Bjarnason, Mary Ann providing aid to the institutions in that are valued and meaningful. Curulla, Shalini Dave, Rosario Diaz- Russia. Currently, a bill is pending in Greenberg, Sue Hamre-Nietupski, Congress that would direct millions of Nancy Weiss Kenn Jupp, Levan Lim, Mary McNeil, U.S. aid dollars toward expanding and Nancy Weiss is the Executive Rhonda Neuhaus, Kola Parasuram improving Russian institutions rather Director of TASH, an international Shrikonth, Florence Seah, Susan than toward supporting better alterna- disability advocacy organization. Sygall, Jacqueline Thousand, Rich tives. TASH sent the following letter to Villa, and June Yen Siew Sim. the Washington Post to voice our concern: PAGE32 0 9 TASH Newsletter, October 1999 INCLUSION IN VIETNAM Inclusion is Happening WM R BY RICH VILLA

we Can't Do Inclusion Here special education service delivery in that The French established the first school Because: country; for Vietnamese students who were deaf - discuss the varied rationale why in 1866. In 1975, the year the Education we have a set curriculum that "thoseinclusive education is gaining momen- for All Handicapped Students Act was students" can't keep up with or learn; tum in Vietnam; and passed by the U.S. Congress, Vietnam students with disabilities won't pass - depict the impact of inclusive educa- initiated the establishment of a special the assessments required to enter the tion on two students and their families. school system. By 1991, Vietnam had next grade; established 36 special schools through- it will lower the standards and out the country. learning outcomes for other students; the content at the secondary level is Significant policy changes...have Vietnam is proud of the fact that in 1991 too difficult; resulted in the removal...of a they were the second nation -- and the we don't have the resources; national regulation that barred first in Asia -- to ratify the United the rationale for it is humanitarian, children with disabilities from pre- Nations Convention on the Rights of the not educational; schools. ...The Vietnathese Child. The convention articulates the we don't have policies to support Ministry of Education has shifted following rights of the child: inclusive practices; its position, stating that 90% of we don't have the support of the children witli-speCial 'educational I. the right to life, survival, and develop- need& could be educated in regular necessary leaders; ment; : it isn't mandated by law; 'schools. -7 II. the right to health and medical care; it won't work; III. the right to a home; we don't have time to collaborate; IV. the right to play; it won't meet the needs of students Demographics V the right to protection from economic who are.... Vietnam has a population of over 76 exploitation; million, which in terms of population VI. the right to protection from sexual Sound familiar? I am sure that the makes it the second largest country in exploitation; readers of this article have encountered Southeast Asia. Ethnically, Vietnam VII. the right to a full and decent life similar arguments countless times. Wereis the most homogeneous country of which promotes self-reliance and active concerns similar to these expressed to Southeast Asia; about 90% of the participation in the community; and me recently in Los Angeles? Louisiana? population are Vietnamese. Life expect- VIII. the right to education (equal in a due process hearing in Rhode ancy at birth is 67 years. Vietnam opportunities to all compulsory primary Island? Yes, I heard them in Los Ange- covers an area of 329,600 square kilome- education). les. Yes, I heard them in Louisiana. Yes, Iters and is 7.5% smaller than reunited heard them in Rhode Island. I also heard Germany. The country extends across them recently in Vietnam. And in two climatic zones and has more than Vietnam, just as in a growing number of 3,000 kilometers of coastline. school systems in the United States, despite all of the barriers, thoughtful andEvolution Of Special Education creative professionals, parents, and Service Delivery students are collaborating with one The National Institute for Educational another and crafting inclusive educa- Sciences' Center for Special Education tional opportunities. This article will (CSE) estimates that there are more than briefly: one million children with disabilities in Vietnam. The evolution of services for describe the demographics of Vietnam; students with disabilities in Vietnam A classroom scene - present an overview of the evolution of parallels that of many other countries. Continued on page 5 PAGE 4 TASM Newsletter, October 1999 INCLUSION IN VIETNAM

inclusion is Happening...WHERE? In September of 1998, CRS and CSE Continued from page were awarded a four year grant from the United States Agency for International Development (USAID) to expand the In Vietnam -- as in other places successful inclusive educational prac- -- it is not a theory that we are tices utilized in Thuong Tin and Tu Liem to an additional three districts. discussing when we talk about The population served and the The 1991 legislation enacted by Vietnam inclusion.It is children, their expected beneficiaries of the grant's included The Law of Protection and Care families, and their futures. activities are described below. for Children, which speaks to reintegrat- ing students with disabilities into society, Table 1: U.S.-AID Beneficiaries the availability of special schools, and the provision of rehabilitative services. Number of Districts A new Constitution was ratified in 1992 that promotes learning and appropriate toward children with disabilities, as well Total Number of Communes vocational training for children with as a shift from an exclusively didactic Per District disabilities. When the Center for Special approach to group work. A greater Population per Commune 7,000 to 9,000 Education (CSE) began to develop sensitivity to students' individual needs training materials to support the integra- by teachers was observed. Additionally, Pre- and Primary School Aged tion of students with disabilities in positive changes in the attitude of Children 3,000 to 4,000 primary schools in 1991, early identifica- community members and parents having Estimated Children with tion of children with disabilities, supporta more optimistic view of their child's Disabilities Per Commune .50 for parents, and inclusion in preschools future were also noted. and secondary schools was rare.It was Total Direct Student Beneficiaries 3,000 very unusual for students with signifi- Policy changes influenced by the Thuong cant disabilities to attend neighborhood Tin and Tu Liem projects include: schools with their non-disabled peers. removal of a national regulation in 1997 The project aims to strategically leverage that barred children with disabilities domestic and international experience to Since 1995, CSE has been working from pre-schools; a new emphasis by the strengthen existing support for inclusive collaboratively with Catholic Relief Vietnamese Ministry of Education statingeducation within government and Services (CRS) and other non-govern- that "90% of children with special society. At the same time it builds on mental agencies (e.g., Radda Barnen) to educational needs could be educated in traditional village values of helping create inclusive education models. For regular schools"; and in 1998, a Viet- others and empowering local communi- example, CSE and CRS established namese law was changed so that for the ties and authorities to provide for the inclusive education models in two first time students with disabilities had educational and social needs of all. The northern Vietnamese districts, Thuong the option of attending special or regularcombination of national-level support Tin and Tu Liem, in 1995. The pilot sitesschools. and local action opens further possibili- were selected as typical rural and urban ties for a fully inclusive environment in districts in close proximity to Ha Noi Today, inclusive education models exist Vietnam. with few pre-existing programs for in 51 of the 61 Vietnamese provinces. In children with disabilities.I have been contrast, seventy-two special schools andIn addition, CSE is working to transition providing consultation, technical units, located mainly in urban areas, students from special schools to assistance, and training to CSE, CRS, educate or train approximately 4,000 community schools while redefining the governmental officials, and educators in students with disabilities. Those who role of personnel in special schools Tu Liem, Thuong Tin, and other districts are "mobile" are often sent to vocational to function as trainers, technical assis- throughout Vietnam since 1996. training classes rather than receiving a tance providers, and consultants. basic education. So-called "compassion- Efforts are underway to pilot changes in During that time, over 800 students withate classrooms" provide daycare instead the teacher preparation curriculum so mild, moderate, and significant disabili- of regular schooling and most compas- that teachers will acquire the skills to ties have been successfully included in sionate classrooms consist of children educate a more diverse student body. Thuong Tin and Tu Liem. The mid-termwith disabilities, poor orphans, and evaluation report from CSE/CRS's ethnic minorities. Thuong Tin and Tu Liem project concluded that training has resulted in a 211 major change in teachers' attitudes Continued on page 6 PAGE 5 TASH Newsletter, October 1999 INCLUSION IN VIETNAM

hien/sky/ is hfalreffilig try:thy?leadership has been critical to inclusion Chhilial owe Continued from page 5 education taking hold and growing in sake e you want to Vietnam. deaelittew gears, Table 2 compares the cost and capacity groto a tree. If of a separate versus an inclusive educa- you want to deaefit Rationale For Inclusive Education tional approach to meeting the needs of 41100 gears,grow a t?/4 In Vietnam students with disabilities in Vietnam. ehild " Just as in the United States, varied rationales (e.g., philosophical, international and national law and policy, fiscal, and model demonstration projects) have Table 2: Cost and Capacity of Separate Versus Inclusive Options motivated policy makers, administrators, teachers, persons with disabilities, and Estimated Separate Annual Cost Districts Prirrary Current Annual Ccst* Children with Special Per Child Implemeniing Sao& with Inclusive Per Child with others to advocate for the creation of Disabilities in Education Inclusive Inclusive Education Disabilities in inclusive schools and classrooms in Metnam (3% of Capacity Echication Education Capacity Inclusive Vietnam. The historical chronology Total) Since 1991 Progranis Education presented above described the interna- 1,000,000 4,000 $100 U.S. 51 1,00() 35,000 $58 U.S. tional and national policy and laws that have positively impacted the growth of *The annual cost of educating a child without a disability in Vietnam is $20 U.S. inclusive education in Vietnam. In addition, the power of model demonstration projects that allow policy makers and others to view first hand the implementation of inclusive education The Face Of Inclusion In Vietnam school. He was kept at home and has also been described. In Vietnam, as in other places, it is viewed as an embarrassment. His important to remember that inclusion is grandfather was planning to give him an about children, their families, and their overdose of sleeping pills. Today, he is future. To illustrate this point, I want to in school, has learned to read, and has In Vietnam, as elsewhere, the briefly discuss two of the many students,friends who support him in cooperative journey toward inclusion has Kim and Lum, whom I have met and groups in school, as well as in getting to begun.The barriers to interacted with during my trips to inclusion are many....Eternal and from school. Vietnam. In essence, I want to conclude vigilance is required to maintain the progress that has this article by putting a face on inclusion been made, overcome the in Vietnam. barriers, and extend inclusive educational opportunities throughout the country.

Mr. Le Van Tac from the National Center for Special Education describes inclusive education in Vietnam as a process of preparing children and teachers so that those who have been Kimworking with two other students in a cooperative learning group. segregated from activities in society can Kim (seated) and his friends on their way to school. participate in the majority of activities with non-disabled children in the same Lum is a youngster with cognitive and classroom. Effective inclusion requires physical disabilities. When I first met community awareness, coordinated Kim is a young boy with cerebral palsy. Lum and his family, he was just begin- community services, teacher and parent Prior to the implementation of ning school. His mother was distraught training, adapted training methodology inclusive education, he did not attend and overwhelmed by her life circum- an adjusted curriculum, and low-cost 0 1; teaching materials. Mr. Tac's visionary Continued on page 7 PAGE 6 TASK Newsletter, October 1999 INCLUSION IN VIETNAM

/ac /usion isItairethig WHEXt? Continued from page 6 1999 TASH Annual Conference stances. She explained that both she and her husband had been soldiers during the Species/ Vietnam War. Her husband was in poor health. She had given birth to other feeot children in addition to Lum. They had all died. She attributed Lum's disability, the death of her other children, and her husband's poor health to their repeated Lum (far right, seated on chair) in the classroom. exposure to Agent Orange during the Vietnam War. As she described her life, loneliness, and fears she began to hit me. is much to celebrate and much that PROcE At first, I thought it was because I was an remains to be done. Eternal vigilance Szkusto Ss American. It was not. She was just is required to maintain the progress that overwrought. has been made and to extend inclusive educational opportunities throughout the Are you facing the daunting prospects of country. As an American, it is wonderful going through a due process hearing to to be involved in Vietnam in a productive get a good program for your child? Have you been asked by a parent to be an way. Ho Chi Minh once said, "If you want expert witness and you have no idea to benefit in ten years, grow a tree. If you what that might involve? Do you want want to benefit in 100 years, grow a to hear from others who have been child." Today in Vietnam, they have through this experience and identify recognized the importance of these words strategies that worked for them? and have begun to create the conditions necessary for all children and youth to Gail McGregor and Judy Gran have grow and flourish in caring and effective organized this strand to include sessions that will address these issues and more. schools. As an added support to families, a Lum at home using parallel bars to walk. The number of attorneys with expertise in bars were made by members of Lum's community. inclusive schooling practices will be Rich Villa is president of Bayridgc Consor- tium. He provides training and consultation available in "consultation rooms" throughout the day of the strand so that in areas such as collaborative teaming, The inclusive education program in families can sign up for a time to meet creative solution-finding, systems change with an attorney to receive legal advice Thuong Tin created collaborative teams and inclusion.Rich is one of the scheduled and wrapped support around both Lum keynote speakers at the 1999 TASH Annual about issues of concern regarding their child's school program. and his mother. Today, Lum is success- Conference. fully included in school and his mother This free service is being provided with gets respite and support from the other Rich can be reached by phone: 760-761 the support and coordination of the 4917; or e-mail: members of her community. Public Interest Law Center of Philadel- [email protected] phia, and is being offered in conjunction Conclusion with the Due Process Strand. In Vietnam, as elsewhere, the journey toward inclusion has begun. There Sign up for this great opportunity to get some advice and information about people in your community that can support your efforts to obtain an We're (caking foryaw inclusive educational program for your child. TASH is working to identify a list of people who have been members since the organization's inception in 1975. If you are one of Thursday, December 9 these loyal members, please contact Nancy Weiss by phone (410-828-8274, ext. 101), e-mail , fax (410-828-6706) or mail (psei4ck cover for TASH's address). . d PAGE 7 TASH Newsletter, October 1999 INTERNATIONAL HUMAN RIGHTS ABUSES

INTERNATIONAL HUMAN RIGHTS ABUSES AGAINST PEOPLE WITH MENTAL DISABILITIES BY ERIC ROSENTHAL

There is an enormous need for Human Rights Abuses in Latin America Central and Eastern Europe, and has collaboration between the and Eastern Europe published reports on human rights international human rights and Mental Disability Rights International conditions in Uruguay, Hungary, and the U.S. disability rights communities. (MDRI) was established in 1992 to Russia [Footnote 1]. MDRI's investiga- For decades, the international human promote the inclusion of people with tions have confirmed the findings of the rights community has seemingly been mental disabilities within the interna- United Nations special rapporteurs in unconcerned with the issue of people tional human rights framework. MDRI great detail. Whether it is the "colonias" with mental disabilities who are subject has investigated human rights abuses of Uruguay, the "granjas" of Mexico, the to human rights abuses around the against people with mental disabilities in "social care homes" of Hungary, or the world. Most people still associate nine countries in Latin America and psychiatric institutions of Ukraine, "human rights" and "mental health" with people with mental disabilities are all too the political abuse of psychiatry in the often rejected by society and left to former Soviet Union. While major languish in closed facilities without hope Over the course of the last few human rights organizations were quick of ever returning to community life. decades, there has been an to condemn the Soviet Union for increasing recognition that detaining political dissidents in condi- In Latin America and Eastern Europe, people with mental disabilities tions of squalor in psychiatric institu- our investigations have found that are, indeed, protected by tions, the same organizations never held people detained in closed facilities out of international human rights the Soviets responsible for abuses against public view are subject to extreme forms law.... We in the disability rights people with mental disabilities within of inhumane and degrading treatment, community must work to the same psychiatric facilities. often in dangerous conditions. In convince our representatives in psychiatric facilities in Uruguay, we Congress that the rights of There is a growing body of evidence that found psychiatric medications used in people with disabilities are, people with mental disabilities are dangerously high levels and combina- indeed, international human subject to pervasive discrimination and tions. People with mental retardation are rights issues and as such, are abuse the world over. In the 1970s and subject to electro-convulsive therapy due all of the attention of the 1980s, the United Nations appointed two (ECT) as a form of behavior control. more traditional areas of "special rapporteurs" to document the concern. Programs that reflect conditions of people with mental In Hungary, MDRI documented the the recognition of disability disabilities around the world. They detention of people with psychiatric rights should be included in the found that, throughout the world, people disabilities in caged beds. Individuals core agenda of our interna- with mental disabilities were routinely detained in these beds, often for months tional foreign policy and at a time, could not stand up, exercise, or segregated from society in closed international development psychiatric hospitals, orphanages, or even go to the bathroom. Most of the programs. other facilities. Discrimination against people with mental disabilities is Continued on page 9 common in most societies. PAGE 8 21 4TAM Newsletter, October 1999 INTERNATIONAL HUMAN RIGHTS ABUSES

INTL. HUMAN RIGHTS Until recently, disability rights advocacy groups have often worked in total In a landmark case before the Inter- ABUSES AGAINST PEOPLE American Commission of Human WITH MENTAL DISABILITIESisolation from one another.In the last few years, however, there has been Rights, an international human rights Continued from page 8 tremendous growth in communication tribunal found that the United Nations- and collaboration among activists from adopted Principles for the Protection of advocacy organizations in the United Persons with Mental Illness" (the MI States, Europe, and Latin America. Principles) constitute an authoritative interpretation of international human individuals we observed in caged beds MDRI has conducted advocacy training rights conventions as they apply to were covered in their own feces and programs throughout Central and many had dangerous bedsores. Eastern Europe to introduce activists people with mental disabilities.This from the U.S. movement to their coun- greatly increases the importanceofthe MI Principles as a tool for the protec- Children in Russia's Institutions terparts abroad. Without exception, we In Russia, a vast orphanage system have found that activists from different tion of people with mental disabilities in houses 500,000 children. Children with countries face similar challenges and the international area. disabilities are labeled "uneducable" and have an enormous amount to share with one another about advocacy strategy. considered "beyond hope." These international program development and children are put in "lying down" rooms implementation. Given the years of past The development of advocacy move- filled with cribs, where they receive discrimination in the international areas, ments by and for people with mental almost no human contact. In parts of funds must be specially earmarked for the former Soviet Union, we found disabilities is the key to reform in any international disability rights work, and country. Veterans of the U.S. movement psychiatric institutions with shortages of disability activists must be brought into have 30 years of experience challenging food, heat, and basic medications. foreign assistance programs to spearhead the status quo, and that experience can Mortality rates in these institutions are this new effort. extremely high. be critical to individuals struggling in their own countries to establish new We in the disability rights community advocacy organizations. We must find a In addition to documenting human must work to convince our representa- way to draw on that experience, to rights abuses, MDRI is committed to tives in Congress that the rights of obtain funding for increased exchanges training and supporting the development people with disabilities are, indeed, among activists from the United States of disability rights advocacy organiza- international human rights issues and and abroad, and to leverage the support tions around the world. In almost every are due the same attention as more of international development policies to country of the world we have visited, we traditional areas of concern. Programs provide support for the reform in have been pleased to find that people that reflect the recognition of disability countries abroad. rights should be included in the core agenda of our international foreign In recent years, the U.S. Agency for policy and international development International Development (USAID) and The development of programs. As we support countries other international development organi- advocacy movements by making the transition to democracy zations have recognized that support for abroad, we must recognize that no and for people with "civil society" and independent citizen democracy is complete when people mental disabilities is the participation is key to bringing about with disabilities are excluded from every key to reform in any development in any country.U.S. opportunity for full participation in foreign assistance funding has been used country. society. Of course, we need to reaffirm to support a broad array of organizations the commitment to disability rights in working for human rights, women's the U.S., so that we may speak free of rights, children's rights, and the rights of hypocrisy abroad. with disabilities, family members, the environment. Funding for disability progressive mental health professionals, rights advocacy has been extremely The Development of International Human and others, have banded together to limited. All too often, international Rights Law programs affecting people with disabili- work on human rights advocacy and Over the course of the last few decades, ties do not draw on the lessons of the service system reform. Unfortunately, there has been an increasing recognition these groups often operate in obscurity. U.S. movement (see related Op-Ed on that people with mental disabilities are, pages 10-11).People with disabilities, They receive little attention and support indeed, protected by international within their own society -- or from the family members, and other concerned international community. activists must play a more active role in 215 Continued on page 10 PAGE 9 TASK Newsletter, October 1999 INTERNATIONAL HUMAN RIGHTS ABUSES

INTL. HUMAN RIGHTS adopted the "Standard Rules on The following Op-Ed piece, published ABUSES AGAINST PEOPLE Equalization of Opportunities for August 4, 1999, Page A21, is reprinted Persons with Disabilities." These U.N. with permission of the Washington Post. WITH MENTAL DISABILITIESGeneral Assembly resolutions are Continued from page 9 important statements of international law, and they set forth a broad array of human rights for people with mental The Way To Save Russia's and physical disabilities. Technically Orphans human rights law. Unfortunately, this By Holly Burkhalter and Eric Rosenthal recognition was late in coming. Article 1 they are "non-binding," however, and of the Universal Declaration of Human do not have the status under interna- Rights (UDHR), the cornerstone of the tional law reserved for human rights conventions. Unlike international international human rights movement As the Russian economy continues to adopted by the United Nations in 1948, human rights conventions, there is no United Nations oversight mechanism to deteriorate, there are no more riveting promises that "Lain human beings images emerging than those of the are born free and equal in dignity and ensure that states comply with these general assembly resolutions. hungry and neglected children housed rights. They are endowed with within Russia's vast orphanage system. reason and conscience and should act Ten years ago, similar images appeared towards one another in a spirit of of wretched Romanian babies and brotherhood." The UDHR prohibits ERIC ROSENTHAL IS THE EXECUTIVE children in appallingly squalid orphan- discrimination "without distinction of DIRECTOR AND FOUNDER OF MEN- ages. The West was quick to respond TAL DISABILITY RIGHTS INTERNA- any kind," but discrimination on the with generous assistance to those TIONAL(MORI),A HUMAN RIGHTS basis of disability is not one of institutions. But as Romania's minimal the grounds specifically mentioned. ORGANIZATION DEVOTED TO THE RECOGNITION AND ENFORCEMENT OF economic social net evaporated, that THE RIGHTS OF PEOPLE WITH MENTAL aid encouraged families unable to care In April of 1993, there was an important DISABILITIES GLOBALLY. for their kids at home particularly development of international human kids with mental and physical rights law for people with mental ERIC CAN BE CONTACTED AT:MDRI, disabilities to give them up. The disabilities. In a landmark case in the 110MARYLAND AVENUE,N.E.,SUITE result was a 37 percent increase in Inter-American Commission of Human 511, WASHINGTON,D.C. 20002; Romania's orphanage population in just (PHONE) 202-544-6074. Rights, Victor Rosario Congo (Case No. 10 years. 11.427, decided April 13, 1999), an international human rights tribunal found that the U.N.-adopted "Principles FOOTNOTES: for the Protection of Persons with Footnote 1. See Human Rights and Mental Illness" (the "MI Principles") Mental Health: Uruguay (1995); Human constitute an authoritative interpretation Rights and Mental Health: Hungary of international human rights conven- (1997); Children in Russia's tions as they apply to people with Institutions: Human Rights and Opportu- mental disabilities. [Footnote 2] The nities for Reform (1999). The Congo case greatly increases the impor- latter report is on the world wide web at tance of the MI Principles as a tool for wwwMDRl.com. All reports may the protection of people with mental be obtained by contacting MDRI, 110 disabilities in the international arena. It Maryland Ave., N.E., Suite 511, Washington, DC 20002. raises new hopes that international human rights conventions will be Footnote 2. Case of Victor Rosario Congo, increasingly used to protect the rights of p.482, n.4. In its analysis of the need to people with mental disabilities in the rely on the MI Principles, the Commis- future. sion cites Eric Rosenthal and Leonard S. Rubenstein, "International Human Rights In 1971, the United Nations General Advocacy under the Principles for the Assembly adopted the "Declaration Protection of Persons with Mental Children that are deemed to be self- Illness, 16 International Journal of Law abusive or "too bothersome" are on the Rights of Mentally Retarded and Psychiatry 257 (1993). restrained. Persons." In 1991, the U.N. adopted the "Principles for the Protection of Persons with Mental Illness" (the Continued on page 11 MI Principles), and in 1993, the U.N. PAGE 10 TASK Newsletter, October 1999 INTERNATIONAL HUMAN RIGHTS ABUSES

The Way to Save Russia's ment policies so that families have Orphans incentives and support to keep kids at The goal of Russian home. These brave efforts are starting to Continued from page 10 disability rights activists bear fruit. Authorities in the city of is for every child to live in a Samara have taken the initiative to family, and for the orphanages remove children from orphanages and to eventually close their doors place them with families in the commu- Today, humanitarians in the U.S. Congress forever. It should be the goal of nities. Elsewhere, a handful of model are poised to make the same mistake in foreign donors, as well. foster care programs have begun, and Russia by funneling millions of dollars to there are several small, integrated Soviet-era custodial institutions. There is schools in Moscow a humane, effective and economical The plight of "orphanage" kids in Russia alternative that should be implemented is not all that different from that of The goal of Russian disability rights immediately to head off a tragedy of American children with disabilities 30 activists is for every child to live in a immense proportion. years ago. We, too, had virtually no family, and for the orphanages to social services for families or education eventually close their doors forever. It According to the Russian government, for the children. Parents of kids with should be the goal of foreign donors, as there are 500,000 children in institu- disabilities were often advised to place well. It can be achievedat a cost tions, and an additional 100,000 kids them in institutions. savings -- by comprehensive and gener- lose their families every year, living on ous programs to subsidize families or the streets or the orphanages. The vast foster families, mainstream kids into majority of these children are so-called the educational system, and offer "social orphans" -- children with living distressed parents at risk of abandoning parents who are left at institutions their children cash payments, day care or because poor families cannot feed rehabilitative services. Russian social them. Many have mental or physical workers need to be trained and assisted disabilities for which there are no in monitoring the children once they dt+ social services at the community level. leave the orphanages. Advocacy efforts by people with disabilities need to be Until recently there has been almost no supported. alternative for parents to placing their children in a state institution, and there The leading disability rights activist in are strong pressures to do that. But the This 5-year old girl with Down syndrome has never been out of her bed. the United States and Europe, Gunnar children's lives are a horror once they Dybwad, has concluded that "four are institutionalized: With family ties But over the past few decades, activist decades of work to improve the living severed, little or no education and parents and the burgeoning disability conditions of children with disabilities minimal emotional involvement from rights movement in the United States has taught us one major lesson: There is even the most well-meaning but over- have transformed the lives of children no such thing as a good institution." worked caregivers, their disabilities and adults with disabilities. Although in Children, especially those with mental or worsen. some states pediatric nursing homes still physical disabilities, invariably will suffer exist, community social services and in Russian institutions, no matter how education are available now for young- much foreign aid pours in. Their only sters with the most significant disabilities. hope for healthy and meaningful lives is for them to be taken out and placed in Change is likely to come in Russia the families that are supported by a network same way, if the United States and other of local social services. donors do not discourage it by shoring up the Russian orphanage system. A handful of parents who have bucked social Holly Burkhalteris advocacy director convention and economic disincentives of Physicians for Human Rights. Eric and kept their children at home have Rosenthal is executive director of joined to form the Down's Syndrome Mental Disability Rights International. Association and other groups. They are Both authors can be contacted at 202 lobbying the government for services, 5-1-I- 607-{. Many kids are left lying on the floor for hours on end. demanding schooling for their children and urging a reform of govern- BEST COPY AVAILABLE PAGE 11217 TASH Newsletter, October 1999 WHAT IS CULTURALLY APPROPRIATE?

What Is Culturally Appropriate? (11MI* Finding a Middle Way BY ALEXANDRA ENDERS, RURAL INSTITUTE ON 4=3 DISABILITIES, THE UNIVERSITY OF MONTANA

Introduction working with finds it unacceptable, Ireformation is the medium for the worthless, or inappropriate to his/her communication of ideas. To improve life, it is. equitable access to disability-related information and resources, the cultural Moving Away from a Black and White context of information exchange needs World to be considered. Cultural context is not Not many years ago, a simpler worldview just something to be aware of during sufficed. Countries were either industri- international exchanges, it is a part of all alized or underdeveloped, technology human transactions. was either high-tech, state-of-the-art or The differences may not be as large as appropriately low-tech, societies were one would initially assume. There are A Recipe for Misunderstanding either bountifully rich "haves" or poor, Imagine this scenario: You have been striking similarities, much of it in the handout-seeking "have nots." asked for the best and most recent state- way information is presented and how of-the-art technology. No one can pay issues of cross-cultural communication Things have changed. Old categories for it, training to learn to effectively use are approached. Assumptions about don't work. We need better ways to it is out of reach, maintenance and perceived value of available options must distribute available resources. With the repair will be a logistical nightmare, and be clearly understood by all parties socio-political changes underway in the it doesn't fit the intended environment. involved. You can provide information world today it is naive to view the planet Does the person making the request live and access to resources that seem to as composed of industrialized "haves" in an underdeveloped country, a major appropriately meet the identified needs. and underdeveloped "have nots." Many city in a developing country, an inner However, if it is not presented in a countries that were resource-poor 15 city in the industrialized U.S., or rural format/context that the recipient values years ago are now considered at a mid- and trusts, it won't be an acceptable America? level, while the highly industrialized solution. Eastern bloc countries are far from resource rich. The outcome Striving Toward Valued Outcomes measures of ourservices We are in the business of increasing the This is also reflected in rehabilitation/ and products should be impact and acceptability of effective disability services, where we need mod- based on the consumer's strategies, products, research findings, els that present solutions in categories perception that somethingof technical assistance, and training that fall in between the extremes of the value was received inthe opportunities in the lives of people with high-tech rehabilitation centers and the transaction. It doesn't make disabilities. The outcome measures of World Health Organization's (WHO) any differencethat you see our services and products should be community-based rehabilitation scheme. value in your intervention.If based on the consumer's perception that Neither of these "ends of the spectrum" the individual or family you are something of value was received in the approaches work very effectively in rural working with finds it transaction. It doesn't make any differ- America. Professionals in specialized unacceptable or ence that you see value in your interven- inappropriate to tion. If the individual or family you are his/her life, it is. Continued on page 13 218 PAGE 12 TASK Newsletter, October 1999 WHAT IS CULTURALLY APPROPRIATE?

What is Culturally in major cities in underdeveloped and David Werner's manual, Disabled Village Appropriate? Finding a developing countries. Children, has a clever adaptation for turning a wheelchair into a self-propelled Middle Way The U.S. National Center for Appropriatetrolley. The orthotist was able to build Continued from page 12 Technology (NCAT) stated that "The the adaptation, and attach it to one of the main goal of appropriate technology is to heavy, fixed-armrest wheelchairs. The enhance the self-reliance of people at a first patient was shown the pictures of urban rehabilitation centers frequently local level." If we substituted the word how the device could be used (you counsel their patients from rural areas to "assistive" for "appropriate," we would essentially drive the wheelchair back- remain in the city after rehabilitation have a useful mission statement for manywards). Compliantly he agreed to try it, because they are convinced that the individuals working in our field. Appro- but then refused to leave his room in it. necessary resources and supportive priate assistive technology doesn't have After repeated discussions (all through services will not be available if the per- to mean cardboard seats and tire tread an interpreter), it was finally clear that son returns to their rural community. sandals. We need a way of using the he felt he had been given a peasant These cross-cultural biases (urban versusconcepts implicit in appropriate technol- device, and though he liked the freedom, rural) and unquestioned assumptions areogy, and presenting them in a format that he was embarrassed by the image he felt only compounded by ethnic and socio- even the "high techies" can find accept- it portrayed. He stated that though he economic differences. Diversity, the able and valuable. came from a mountain village, he was buzzword of the 90's, assumes an accep- not a peasant. He refused to use the tance and value of different experiences A Closer Look From mobility device on the unit. Several cultural, ethnic, socio-economic. a Distance weeks later, I found a project plan for an There is little acknowledgement of International almost identical device in the appendices diversity in rehabilitation today, in the experience provides to Ford and Duckworth's Physical U.S. or elsewhere. the outsider with a Management for the Quadriplegic clearer view of his/ Patient. The book had been circulating her own culture, on the unit, the pictures in the chapter and the hidden assumptions that often on sexuality being the major attraction. What Should lead to misunderstanding and miscom- When the pictures of the similarly We Call the munication. It can also point to direc- adapted wheelchair from the specialized Middle? tions for developing new strategies. rehabilitation book were shown to another patient, he was eager to try it. 0 Working in Armenia when it was still The original device was adjusted to fit. A curious vacuum exists for effective part of the Soviet Union made me more When presented with the adapted chair, strategies that are in the middle of the aware of the need for a "middle way" to he refused, stating it was the peasant spectrum. Most of the words that fit approaching cross-cultural communica- device that we'd used with the other already have other connotations. Inter- tion related to services for people with individual. I remain convinced that if I mediate and appropriate are distinctly disabilities. My training and experience had presented the device to the initial tied to international development efforts.have enabled me to transcend the high patient as originating from the sophisti- Appropriate technology is generally tech/low tech gap. I've always been cated Ford and Duckworth text, and not focused on the needs of people from involved at both ends of the spectrum - with pictures of barefoot peasants, that rural areas in third world countries. the high tech environment of Stanford the acceptance would have been com- When this approach is adopted by an and the Electronic Industries Founda- pletely different. industrialized country such as the Unitedtion, and the low tech world of DIY (do States, its target is usually the develop- it yourself), scrounging for low cost Coming from a subset of American ment and implementation of technolo- solutions, and supporting projects in culture that will accept just about gies appropriate for low-income commu-third world countries. anything that works, it was amazing to nities, especially those in rural areas. me to see a useful device rejected Appropriate technology is grounded in Uncovering Hidden Assumptions because of the image it conveyed. The cultural, political, and ecological More than one of the patients on the more I observed, the more I could frameworks; its proponents often share spinal cord injury rehabilitation unit in understand why some things were an almost evangelical zeal. Unfortunately,Armenia could have benefited from accepted, while others were rejected out most professionals working at the independent mobility while their of hand. Much of the causality can be sophisticated urban end of the spectrum pressure sores were healing. There were traced to the way the information, have little appreciation for this approach.few gurneys available, and none could be It also tends to be rejected by urbanites spared to be fitted with drive wheels. Continued on page 14 PAGE1321 9 TASK Newsletter, October 1999 WHAT IS CULTURALLY APPROPRIATE?

What is Culturally chines available to them during inpatientground. The same idea appears useful for Appropriate? Finding a treatment (continuous passive motion, a Native American dwelling which has Middle Way electrical stimulators, biofeedback high doorway thresholds which cannot devices). But if they need ongoing be ramped due to the culture's spiritual Continued from page 13 assistive technologies, they are probably belief system. The Indian trolley has a going to be left to their own devices. set of wheels that allow the driver to tip Most Americans probably would not back and forth over a threshold. It would service, treatment, or product was balk at building something that came be valuable to take the Indian material presented. from a book intended for third world and redraw it so it is more graphically citizens. But for most people this acceptable to Native American applica- This was not peculiar to Armenian material would be difficult to locate. tions. mores. I worked as part of a multina- tional team with members from 15 Acknowledgements countries. When I tried to introduce material from the World Health Characteristics of a Middle Way I would like to thank Ralf Hotchkiss and Organization's community-based Greg Dixon for the wisdom they have rehabilitation (CBR) manuals, I found no Middle Way projects and communica- shared with me on these issues. support. Others, including the team tion methods incorporate: leader from England and head nurse from Australia, felt these manuals realistic economic and cultural Reprinted with permission of inappropriate. After all, "we weren't in context Rehabilitation International (RI), Africa." Having learned my lesson about publisher of One-in-Ten. For more using pictures, I assured them we would accurate understanding of information on the work of RI, call not use the pictures. The information in cultural self-perception (i.e. the way the manuals was directly applicable, but people see themselves and want their (212) 420-1500. most of my colleagues could not get neighbors in the world to see them) beyond the presentation style and format. flexibility and the ability to see 0 beyond the boundaries of one's own I returned to the U.S. convinced that we cultural interpretations needed to develop better communication vehicles, that we were losing valuable mechanisms for mutual two-way information because we do not see the exchanges broader market possibilities, and instead CoxlielOce only package data for a particular emphasis on the value of contri- event audience. butions by all participants, including PSNvial explicit identification of what persons 031Speal Collaborating on a Middle Way unfamiliar with the native culture will Today, I see a broader audience than the learn and receive in exchange for two primary ones described. There has to what they bring to the project Join Lawrence Gorski, be a middle way. Consider all the people Director of the Chicago Mares who need the same basic content in the full participation and equitable office for People with Disabilities information developed for resource poor sharing among all participants, not a societies. A large number of these charitable giving to needy folks FRIDAY/ DECEMBER m individuals are not and do not consider 8:o0 -1015 am themselves peasants. The list includes sustainability and self-sufficiency the entirety of the former Soviet Union, Mr. Gorski will lead a discussion of the the old former Eastern bloc countries voting rights, political voice and electoral and major cities in developing countries. opportunities for people with disabilities And sometimes it takes a little imagina- during the presentation "Awakening the For example, much of the rural U.S. tion to translate it. For example, a book 'Sleeping Giant' in the New Millenium.". could be considered in this category. from India has construction ideas for a People in many rural areas experience low cart useful inside village huts, where anomalies in resource availability. They most people cook and eat close to the iks session is part of the Governmental may have all kinds of high-tech ma- Affairs Strand.

PAGE 14 22 0 TASK Newsletter, October 1999 QUE ES LO CULTURALMENTE APROPIADO?

Que Es lo Culturalmente Apropriado? Buscando el Termino Medio !IMO* POR ALEXANDRA ENDERS, RURAL INSTITUTE ON 4=3 DISABILITIES, UNIVERSIDAD DE MONTANA, EE.UU

Introduccion Saliendose de un mundo en blanco y negro La informaciOn es el medio para la comunicaciOn de ideas. A fin de No hace muchos aiios que bastaba tener mejorar el acceso equitativo a la una vision del mundo mas simple. Los informaciOn y recursos relacionados con paises o eran industrializados o las discapacidades se necesita priMero subdesarrollados, la tecnologia era la mas considerar el contexto cultural del avanzada o la mas obsoleta, las intercambio de informacion. El contexto sociedades eran inmensamente ricas o cultural no es simplemente algo de lo pordioseramente pobres. Las cosas han cambiado, las categorias que se debe de estar consciente durante deben ser entendidas claramente por los intercambios internacionales, sino viejas ya no sirven. Necesitamos mejores todos los participantes involucrados. formas de distribuir los recursos que es parte de todas las actividades del Usted puede proporcionar informaciOn y ser humano. disponibles. Con los cambios socio acceso a recursos que parecen satisfacer politicos a los que se enfrenta el mundo las necesidades identificadas Una receta para los malentendidos en la actualidad, es ingenuo pensar que apropiadamente. Sin embargo si no es el planeta sigue estando compuesto por presentada en una forma/contexto que el Imaginese la siguiente situaciOn: Usted industrializados que tienen y recipiente valore y confie, no sera una subdesarrollados que no. Ahora se ha hecho un pedido de la mejor y mas soluciOn aceptable. reciente tecnologia del momento. Nadie considera de nivel medio a muchos paises que eran pobres en recursos hace la puede costear, la capacitaciOn para En busca de resultados valiosos usarla eficientemente esta fuera de 15 aims, mientras que los altamente alcance, el mantenimiento y reparaciOn industrializados del bloque oriental estan Nosotros estamos en el negocio de lejos de ser ricos en recursos. sera una pesadilla logistica y no se ajusta incrementar el impacto y aceptaciOn de at ambiente para la que se le ha Esto se refleja en los servicios de estrategias efectivas, productos, rehabilitaciOn y discapacidad, donde considerado. LDOnde vive su usuario, en resultados de investigaciones, asistencia un pais subdesarrollado, en una ciudad necesitamos modelos que presenten tecnica, y oportunidades de capacitaciOn soluciones en categorias que caen entre grande de un pais en desarrollo, en el en las vidas de las personas con interior de una ciudad industrializada de los extremos de los centros de discapacidades. El resultado de nuestros rehabilitaciOn de alta tecnologia y los los EE.UU. o en una zona rural de ese servicios y productos debe de basarse en pais? esquemas de la rehabilitaciOn en que se las percepciones que los consumidores basa la comunidad de la Organizaciem tienen de que algo de valor fue recibido Las diferencias puede que no sean tan Mundial de la Salud. Ninguna de estas en la transacciOn. No representa ninguna metodologias de "extremos del espectro" grandes como se puedo imaginar at diferencia que usted yea el valor de su principio. Hay sorprendentes similitudes, funcionan eficientemente en la zona intervenciOn, ya que si el individuo o rural de los EE.UU. Los profesionales de mucha tiene que ver de que manera la familia con los que trabaja to encuentran informaciOn es presentada y como se los centros urbanos especializados inaceptable, sin valor o inapropiado para frecuentemente aconsejan a sus pacientes enfrente a los temas de la comunicaciOn su estilo de vida. intercultural. Las suposiciones sobre el rurales que se queden en las ciudades valor percibido de opciones disponibles Continuado en la paginacion 16 PAGE 15221 TASK Newsletter, October 1999 QUE ES LO CULTURALMENTE APROPIADO?

Que Es Lo Culturalmente ciudades grandes de los paises de bajo costo y apoya proyectos en paises del Tercer Mundo. Apropiado? Buscando el Termino subdesarrollados y desarrollados. Medio El Centro Nacional para la Tecnologia Revelando suposiciones escondidas Continuado de la paginacion 15 Apropiada de los EE.UU. (U.S. National Centre for Appropriate Technology) ha En Armenia, por lo menos uno de los declarado que "La meta principal de la pacientes de la unidad de rehabilitaciOn despues de it a rehabilitaciOn, porque tecnologia apropiada es la de mejorar la de lesiones de columna se podria haber estan convencidos que no encontraran ni auto suficiencia de la poblaciOn a nivel beneficiado de tener movilidad recursos ni servicios de apoyo cuando local". Si nosotros sustituimos la palabra independiente mientras las heridas regresen a sus comunidades rurales. "asistida" por la palabra "apropiada", causadas por la posiciOn en que se Estos prejuicios que sobrepasan las podriamos tener una declaraciOn de encuentra todo el tiempo mejoraban. Se barreras culturales (urbano-rurales) e principios para muchos individuos que disponia de pocas camillas y a ninguna hipOtesis que quedan sin trabajan en nuestro campo. La tecnologia de ellas se les podia poner ruedas cuestionamiento estan compuestas de de asistencia apropiada no direccionales. El manual de David diferencias etnicas y socioculturales. necesariamente significa asientos de Warner, "Disabled Village Children," Diversidad, termino de moda en la carton y sandalias de suela de neumatico. tiene formas ocurrentes de como adaptar decada de los 90, asume la aceptaciOn y Necesitamos de alguna manera usar una silla de ruedas en una camilla donde valor de las diferentes experiencias conceptos que estan implicitos en la la persona se pueda impulsar por si culturales, etnicas y socioeconOmicas. tecnologia apropiada y presentarlos en misma. El ortista pudo construir esta Hoy dia hay un poco de reconocimiento un formato que aim los partidarios de la adaptaciOn y anadirla a una de las sillas de diversidad en la rehabilitaciOn, canto "alta tecnologia" pueden aceptar y de rueda pesadas con descansa brazos en los EE.UU. como en otros lugares. valorar. fijo.

zcsno Una mirada cercana Al primer paciente se le mostrO fotos de debertamos desde lo lejos como se podria usar el "aparato" , (tu llamar al simplemente maneja la camilla adaptada Termino La experiencia en reversa). Se mostrO interesado a Medio? internacional le probar el "aparato", pero se negO a salir ofrece a aquellos que de su cuarto el. Despues de varias Existe un curioso vacio de estrategias vengan de otros lugares, una mas clara discusiones a traves de un interprete eficaces que estan en medio del espectro. vision de su propia cultura y de los quedo en claro que crefa que le habian La mayoria de las palabras adoptadas ya prejuicios escondidos que generalmente dado un artefacto para campesinos, y tienen otro tipo de connotaciones. Ya llevan a malentendidos y falta de aunque le gustaba la idea de que "intermedio" y apropiado" estan comunicaciOn apropiada. Tambien independencia, le daba vergrienza la indudablemente ligadas a los esfuerzos pueden llevar al desarrollo de nuevas imagen que daba. Dijo que aunque venia de desarrollo internacional. La tecnologia estrategias. de un pueblo en la montana, el no era un apropiada generalmente se relaciona con campesino y se negO a usar el "aparato" las necesidades de la poblaciOn rural de El trabajar en Armenia cuando todavia mOvil en la Unidad. los paises del Tercer Mundo y cuando era parte de la Union Sovietica me hizo este concepto es adoptado por un pais mas conscience de la necesidad de Semanas despues halle un proyecto para industrializado como los Estados encontrar una "termino medio" para un aparato casi identico en las paginas Unidos, generalmente su objetivo es el enfrentarme a la comunicaciOn intercul- del libro titulado "Physical Management desarrollo e implementaciOn de tural relacionada con los servicios de la for the Quadriplegic Patient" de Ford y tecnologias apropiadas para poblaciOn de personas con Duckworth. El libro habia circulado en la comunidades de bajos ingresos, discapacidades. Mi capacitacion y Unidad, las fotos en el capitulo sobre especialmente aquellas que estan en experiencia me ha permitido trascender sexualidad eran las de mayor atracciOn. areas rurales. La tecnologia apropiada se el vacio entre la alta y la baja tecnologia. Cuando se le mostrO las imagenes de una basa en esquemas culturales, politicos y Siempre he participado en los dos silla adaptada en forma parecida a otro ecolOgicos y sus autores generalmente extremos del espectro: el ambience de paciente que la necesitaba, se mostrO comparten un celo casi evangelico. La alta tecnologia de Stanford y de la ansioso de probarla. Se ajusto el diserio mayoria de los profesionales que trabajan Electronic Industries Foundation, y el original para que el paciente pudiera en el medio urbano sofisticado, del mundo de baja tecnologia llamada usarla. Cuando se le mostrO la silla desafortunadamente poco aprecian esta "haslo to mismo", que busca soluciones adaptada, la rechaz6 diciendo que era el metodologia que tambien tiende a sufrir aparato para campesinos que use el otro rechazos de la poblaciOn urbana de las 0 Continuado en la paginacion 17 4 PAGE 16 TASK Newsletter, October 1999 QUE ES LO CULTURALMENTE APROPIADO?

Que Es Lo Culturalmente de haber un Termino Medio. Considerar comprensiOn veraz de las auto Apropiado? Buscando el Termino toda la gente que necesita el mismo percepciones culturales (por ejemplo, la contenido basic() de informaciOn forma en que la gente se ye a sr misma y Medio desarrollada para sociedades pobres. Una como desean que sus vecinos del mundo Continuado de la paginacion 16 gran parte de estos individuos no son ni los vean se consideran campesinos. La lista incluye la totalidad de la ex UniOn flexibilidad y capacidad de ver mas paciente. Quede convencida que si se le Sovietica, el viejo ex bloque de parses alla de los limiter de sus interpretaciones hubiera presentado el aparato al primer orientales, y la mayoria de las ciudades culturales paciente como si fuera el diseno original de los parses en desarrollo. y no con fotos de campesinos descalzos, mecanismos de intercambio mutuo la aceptacion podria haber sido diferente.Por ejemplo, gran parte del area rural de de ambos lados Viniendo de un subconjunto de la los Estados Unidos se puede considerar cultura norteamericana que acepta en esta categoria. La gente de muchas enfasis sobre el valor de las cualquier cosa que funcione, me areas rurales experimenta anomalias en contribuciones de todos los asombrO ver el rechazo de un dispositivo el acceso a recursos. Muchos de ellos participantes, incluyendo la por la imagen que proyecta. Al observar puede que dispongan de todo tipo de identificaciOn explicita de lo que los mas detenidamente, pude entender por maquinas de alta tecnologia en el extrarios recibiran y aprenderan en que algunas cosas eran aceptadas tratamiento de pacientes: como las de intercambio de lo que ellos aportaran al mientras que se rechazaba otras sin movimiento pasivo continuo, proyecto considerar su valor. Mucha de la estimuladores electricos y de casualidad puede ser identificada de bioalimentaciOn. Pero si necesitan participaciOn total y distribuci6n como se presentO la informaciOn, el continuamente de tecnologias asistidas, equitativa entre los participantes, no dar servicio, el tratamiento o el producto. probablemente deberan terminar usando caridad a las gentes necesitadas Esto no es peculiar en las costumbres de sus instrumentos propios. Muchos de los Armenia. Trabaje como parte de un norteamericanos probablemente no autosuficiencia y manutenciOn equipo multinacional con miembros de dudarian en construir algo que aparece 15 parses y cuando trate de presentar en un libro para ciudadanos del Tercer Reconocimientos materiales de los manuales de las mundo. Pero para la mayoria de ellos rehabilitaciOn basada en la comunidad seria dificil conseguir los materiales y a Deseo dar las gracias a Ralf Hotchkiss y a (RBC) no hubo apoyo. Otros, como el veces se necesitara algo de imaginacion Greg Dixon por la sabiduria que han jefe del equipo britanico y la enfermera para traducirlos. Por ejemplo, en un compartido conmigo en estos temas. representante de Australia creyeron que libro de la India contiene ideas de como los manuales eran inapropiados. A fin de construir un carruaje de baja altura util cuentas, "no estabamos en Africa," solamente dentro de las chozas de una dijeron. Aprendida mi lecciOn sobre el villa, donde la mayoria de la gente cocina use de fotografias, les asegure que no las y come casi a nivel del suelo. La misma usaria mas. La informaciOn de los idea parece ser fail en las casas de los manuales se podia aplicar directamente, indigenas norteamericanos que tienen Reprinted with permission of pero la mayoria de mis colegas no umbrales altos a los cuales no se les Rehabilitation International (RI), pudieron it mas alla del estilo y formato puede poner rampas dadas sus creencias publisher of One-in-Ten. For more de la presentaciOn. religiosas. La silla automotora india tiene information on the work of RI, call ruedas que le permiten inclinarse hacia (212) 420-1500. Regrese a los EE.UU. convencida que atras y adelante para saltar el umbral. necesitamos desarrollar mejores formas Serra valioso tomar el material indio y de comunicaciOn y que estamos redisenarlo para que fuera mas We gratefully acknowledge the perdiendo informaciOn valiosa porque nograficamente aceptable a las aplicaciones invaluable assistance of TASH podemos ver mas alla de las de los indigenas norteamericanos. Executive Board member Jorge posibilidades del mercado, ya que solo se Pineda in providing the Spanish- prepara la informaciOn para un audiencia Caractertsticas del Termino Medio en particular. language translation of this article. Los proyectos de Termino Medio y los Colaborando en un Termino Medio metodos de comunicaciOn incorporan:

Hoy puedo ver que hay una audiencia contextos culturales y econOmicos 0 mayor que las dos antes descritas. Debe realistas

PAGE 172 23 TASH Newsletter, October 1999 ACCESSIBLILITY IN THE U.K.

BY ANN BLACKBURN

Coming back to England after the theater. The cab driver did not know trapped and so lonely because I find it so spending six weeks in Portland, how to use the ramp on his own cab and difficult to get out. What 22 year-old Oregon, was a real eye-opener. It my friend had to show him. When we lives like this? was also rather depressing because got to the theater, the accessible entrance returning to the U.S. reminded me of for people using wheelchairs was a My summer in Portland reminded me of how independent I could be. Since I make-shift ramp around the side en- what is possible.I was able to go where moved back to England from Portland trance. Our seats were down a flight of and when I wanted without long-term three years ago, despite my efforts, I havestairs where they put two planks as planning because all buses and light rail found it almost impossible to participate ramps. It took three grown men to get trains are equipped to carry people that in mainstream society.I feel that I am me back up. When I booked the tickets, use wheelchairs. It was convenient not missing out on life. they told me that the theater was to have to worry about whether or not I accessible. could get into buildings; most are Accessibility in the accessible.

Like any other England has made some improvements, "My summer in Portland reminded me 22-year-old and is a lot easier to travel around than it of what is possible.I was able to go woman, I like to was five or ten years ago. All buildings where and when I wanted without (a lot go out and have a are supposed to be wheelchair accessible of advance booking or] long-term good time. For by 2004. I really don't see how that can planning...." What 22 year-old would two reasons it is be accomplished in large cities like want to be bound by inaccessibility to very difficult to London that are old and so densely CIO transportation or inability to access travel about in populated. After my visit to Portland buildings and other structures? For that London. First, the lack of accessible and having the feeling-of independence matter, why should anyone have to live public transportation means using taxis, due to greater access to mobility, upon like this? which can be very expensive, especially my return to England I feel that I have because wheelchair accessible taxis tend made a major step backwards in this part to be a lot costlier than non-accessible of life. taxis. Second, chances are that even if I do manage to arrive at the building I am I live alone, so going out and meeting Social Benefits going to, it will not be accessible. people is important to me. When I go One thing I will say about being here is Needless to say, I do not get out as much out, I need to book transportation in that the United Kingdom does a good job as I need to or want to. advance and that sometimes limits me. of assisting people with disabilities If I forget to book or it is a last minute through the benefits system. Those who I remember the time that I went to the decision, I cannot go. A lot of the time itget everything they are entitled to are theater in London with a couple of is such a hassle to book transportation able to live quite comfortably. friends. We took the subway to Kings and make sure the destination is acces- Cross station and hired a cab to get to sible, that I feel it is not worth it.I feel Continued on page 19 PAGE 189 0 TASH Newsletter, October 1999 A., 4, ACCESSIBILITY IN THE U.K.

/I To= lap It is true what they say: "you don't know Continued from page 18 what you are missing until you lose it." When it comes to Since I was essentially raised in an providing services and inclusive environment, I don't feel that I facilities for people with fit into the so-called "disabled" scene. A drawback, however, is that benefits in disabilities both countries have England are so good that the indirect their advantages and disadvan- In the past several years I have tried in result is that it encourages people to stay tages.In a perfect world, I countless ways to participate in main- at home and not fulfill their potential. would like to see a system when stream society and improve my life. For many people that receive benefits it the best features of both Some of my attempts have worked, but is actually not worth working because as countries are combined. mostly I have come across other barriers. soon as you secure a job, doors to money It seems as if I take three steps forward and services start to close. For example, and two backward. after you get a job, social service starts to charge for home care. Unfortunately, I feel that I am missing attended until she was old enough to out on a time of life when I should be In the United Kingdom the benefit leave. She then went on to a college for out discovering who I am and who I system is generous to the point where people with disabilities. Sadly, we no want to be. All I want is to be able to most people do not need to have full longer had anything in common. I live my life in a way that suits my time jobs to survive. By contrast, in the found her to be lacking in the most basic personality. Eventually, I will probably United States the benefit system is social skills. move back to Portland where I feel less lacking in many ways and as a conse- trapped. quence, people need to find jobs. On theHere in England people with disabilities one hand, this may force people with are usually congregated together. It is When it comes to providing services and disabilities into mainstream society and not surprising, then, that the general facilities for people with disabilities both may help to close the social gap between population is not used to being around countries have their advantages and those who have disabilities and those people with disabilities. Children disadvantages. In a perfect world, I who do not. While this may be all very without disabilities are not used to being would like to see a system where the best well for people who can work, if work is around those of us with disabilities, so features of both countries are combined. not an option the United States is not the when they get out in the world and meet In truth I do not know where the answer place to be. us they do not know how to relate to us. lies. Education The United States, or at least Oregon, Years ago children with disabilities were seems to have the right idea on this sent to special schools, if they went to issue. Inclusive education is the way to Reprinted with permission of The school at all. This was equally true in go. In Oregon, if the parents of a child People First Connection, pub- both the United Kingdom and the United with a disability want their child in an lished by the Oregon DD Council States. Having lived in both countries, I inclusive classroom, the school basically Self-Advocacy Initiative. have experienced both segregated and has to comply. When I moved to inclusive education. Portland at the age of ten, I attended my neighborhood elementary school. The Subscriptions to The People First Before my family moved to the United school provided a personal assistant in Connection can be obtained by States, I went to a school for children the classroom to help me with note- writing to: The People First with disabilities. Although I was not taking and writing. I had a lot of Connection, 540 24th Place, NE, being challenged, I was happy there catching up to do because when I Salem, OR 97301-4517. because I did not know what I was entered mainstream education I was at missing. This sets a pattern for segrega- least two years behind my peers.I tion in later life. When school finally caught up quite quickly and graduated ends, the person with a disability has with honors. I am so grateful that I was been in a protected environment and, able to fulfill my educational potential. 0 therefore, has missed out on gaining Now I am looking at a career in desktop those important social skills that will be publishing. I believe that being in an needed. The first time I returned to inclusive educational placement is England, three years ago, I went to visit responsible for building my self-esteem an old childhood friend. She had and allowing me to become who I am remained at the segregated school I had today. 225 PAGE 19 TASK Newsletter, October 1999 PERSON-CENTERED PLANNING

Living Person-Centered Planning in the Village of Kumbayah

BY SHINA ASANTE AHAD AND BAHIYA CABRAL ASANTE

Eight years ago, after almost a had pressing family needs, including the customary for him/her, his/her parent/ decade of intense community desire to actually spend time with their guardian or other key person(s) to organizing around issues as loved ones every once in awhile, as well present the situation to the gathered diverse as keeping a neighborhood fire as the overwhelming needs of children villagers. Once the situation has been station open and developing youth growing up in a world where tempta- laid out, a committee may be chosen by leadership, members of New African tions are many. In the words of the co- the person or people may volunteer. Voices Alliance (NAVA) evaluated our founder of NAVA, Shafik Asante, "People That committee will look into the work and its impact. Our vision was a are too busy struggling for their eco- various options that are available for that society where each individual could nomic survival to think about their particular situation. Then they will ask thrive, where human relationships were human liberation." the person who is being supported what based on love and respect, and where goals are expected. In this process, we both political and economic democracy Out of this evaluation a new concept wasuse person-centered planning tools. were the order of the day. However, in born. Actually, it's probably not new as When we have worked with a villager in looking back over years of work, we there is "nothing new under the sun." resolving a problem or plotting a course recognized that we had lost many people Yet, it is definitely something we've to a goal, we then have periodic check- along the way. gotten away from in the U.S. -- the ins to make sure that things are moving concept of community building, or what according to plan and to identify what The real life needs of these individuals we in the Village of Kumbayah call modifications or additional supports, if took them away from working to villaging. As African people, we once any, are needed. improve their block, neighborhood, city, believed in the village concept -- raising and society. Many times, economic our children in an atmosphere of shared Our most complex experience with needs did not allow the time and energy love, support, and discipline. In a person-centered planning occurred when for community organizing. People also village, children have the combined care Shafik Asante was hospitalized in 1997. of many people, extended "family" We often refer to Shafik as the heart of members to whom they can go. the Village of Kumbayah. He battled In a village, children have the cancer for 20 years, but still was able to model for us what villaging was all combined care of many people, Person-centered planning works the same way in the village. The person in about. In 1994, Shafik did a MAP (an extended "family" members to need of support receives it from an information gathering system that whom they can go.Person- entire group of people who value that creates a positive portrait of a person by centered planning works the person and have an emotional invest- working with his/her friends, family and same way in the village. ment in his or her growth and success. colleagues) that was invaluable to us in When it has been determined that someone needs extra support, it is Continued on page 21 PAGE 20 r) 0t-N TASK Newsletter, October 1999 4,0 PERSON-CENTERED PLANNING

Living Person-Centered Planning in ies#011M1144141400%e041246.111611.141%94 12044a1161611Z $ the Village of Kumbayah Continued from page 20 111 60/11/1181110/e/.011 of John f. *may Ir.

Lost Champion of Direct Support Professionals and People with Disabilities determining the kind of care he wanted to receive. We knew that it was necessary to provide round-the-clock support, The loss of John F Kennedy, Jr. leaves us saddened and so we came together and drew up a plan. has many of us pondering his legacy. Of the many things for which he will The plan insured that he was never at be remembered it is hoped that his contribution to those who provide direct the hospital alone, that all hospital care support to people with disabilities will be among them. that he received was monitored, and that he was always treated with dignity and Aware of how underpaid, under-recognized and undervalued frontline respect. This was especially critical workers are and how this impacts the people who need support, John E towards the end of his hospitalization, as Kennedy, Jr. responded in 1989 by founding Reaching Up, Inc., a non-profit he was not able to insist upon those organization devoted to providing higher education and career opportunities things for himself. for Direct Support Professionals (DSPs). Since that time, Reaching Up, Inc. has provided mentoring, higher education, opportunities to join professional For example, Shafik always required that associations and attend national conferences, and other support for Direct doctors treat him as a whole person -- Support Professionals who are committed to their work. Through Reaching speak directly to him, ask him questions, Up, Inc., John F Kennedy, Jr. also helped to found the National Alliance for let him know what they were doing. We Direct Support Professionals. insisted that these practices continue when he was unable to speak. We made Mr. Kennedy recognized the need for both Direct Support Professionals and sure that his favorite music was played, people with disabilities to share dialogue around important issues on an that his symbols that he valued were ongoing basis. It was for that reason Reaching Up, Inc. supported the placed around the room, that, in fact, the publication of Frontline Initiative. Writing in the premier issue of the Frontline environment in his room was as close to Initiative, Kennedy said, "We need more forums like these, outside of the home as possible. The requirements of service environment, where workers and people with disabilities can talk his care were shared by all villagers. At directly to each other to discuss their common interests as well as differ- the same time this provided needed ences. As allies with a shared agenda, they can help each other achieve their support to his family and to everyone in goals." the village during this especially painful experience. It was necessary for us to John E Kennedy, Jr. saw this publication as a way to foster communication pull together, and we did. and networking among the millions of Direct Support Professionals and Self- Advocates around the country. Reaching Up, Inc. funded several initial printings of the newsletter, and the organization continues to support this Shafik passed away on September 5, 1997. Supporting him was the first publication through editorial participation and writing assistance. major test of person-centered planning While serving on the President's Committee on Mental Retardation, Mr. in our village. We had utilized it before Kennedy co-sponsored many initiatives of the President's Committee that but never in a situation that required so promote better lives for both DSPs and people receiving supports. Among much of all of us or where the person them are the Next Generation Leadership Symposium, an annual conference was not able to directly communicate for developing leadership among younger DSPs, and several publications, his wishes. We struggled to insure that including: Opportunities for ExcellenceSupporting the Frontline Workforce; Voices Shafik's needs, as he saw them, were put of the Next Generation; and With a Little Help from My Friends. first, and for us that is the heart of person-centered planning. As an expression of gratitude for the many contributions John F Kennedy, Jr. made to improve the status and well-being of direct support workers, Frontline Initiative will feature a special tribute to him and his accomplish- Reprinted with pennisionfroni:Shina ments in this arena. The issue will be a commemoration by those who knew Asante Ahad and Bahiya Cabral Asante, him and worked with him on these issues, including DSPs whose lives he IMPACT, Vol. 11, .146.1, Fall '98:published influenced through his foundation and personal attention to their issues. by the Institute on Community Integration (UAP); University of Minnesota. Bill Ebenstein, CUNY S 227 BEST COPYAVAILAE PAGE 21 TAW. Newsletter, October 1999 THE EDUCATION CORNER

l'M NOT IN SPECIAL EDUCATION ANYMORE: MY NAME IS PETER BY PETER HUNTON WITH MARY BETH DOYLE

Iam a tall, handsome, single guy.I I'm not special ed anymore. My name is am 22 years old.I am a college sr -...*7_77-- Peter. I'm a college student. I like college student and I am NOT a special ,r1 because it is open and people like to talk education student anymore. I like to you. The other students don't care if playing basketball, exercising, and you were special ed or not when you were hanging out in downtown Burlington in high school. I'm a lot happier now (Vermont).I like being with my friends. because I have friends. Mostly the other I like jazz and rock-and-roll music. I college kids don't treat me like a baby. But like school, too, because now I am sometimes, the other adults do treat me taking very interesting classes.I espe- like a ten year old kid. Maybe it is cially love my History of the '60s class. because the adults never grew up with I've gotten more out of that class than special education kids. Those adults grew out of any other class that I've ever up in the '60s and then the special ed kids taken.I never liked any other class were put away. before.I like that class because the teacher has a sense of humor and teaches I learn a lot more stuff now, too.I get to a lot about women's issues, the Vietnam learn stuff I never learned before. The War, and the Civil Rights Movement. It's That's me on the right. The picture is from a important things that I learned this year really powerful stuff. The class is building project that I helped with at Trinity are how to speak more clearly and to outgoing and busy. College of Vermont. The other person in the share my ideas. I've also learned how to picture is Dr. Garet Allen-Malley. She is in joke around with people.I really like I don't like boring teachers. Boring charge of the Education Department. college. Now people call me by my teachers teach slowly and don't have a name. ..they don't call me names. My sense of humor. I had a lot of boring name is Peter and I am not a special ed teachers in high school because I was in In high school my teacher always had kid anymore. special ed. In high school, if you're in someone on my back. The person was special education classes, they make you like a tour guide. There was always a do stupid things like brushing your teeth teacher or aide hanging on my back like in school. That isn't good because that I was a baby. Now I don't have people stuff you do in kindergarten. I don't hanging out on my back because I'm not think the other kids in special education a special education kid anymore. 1999 TASII Annual Conference liked it either. They also give you stupid ' kindergarten contracts when you're in ' I couldn't participate in sports or Sfteetal Swat ' special ed in high school. It is a good anything in high school. I wasn't in any ' thing that I had a good case manager clubs because I didn't have any friends. '' because she said I didn't have to do stuff "Nothing About Us Without Us"5, that I thought was baby stuff. I hated being in special education fro, because when people talked to me, they Join us for a presentation by James I was in high school for 6 years. That's a talked to me like I was a baby. They Charlton, author of the book, long time to be at a place that you don't talked very slow and very loud as if I Nothing About Us Without Us: 0 like. Another reason I didn't like high were deaf.I wish they would have Disability Oppression and Empower-1, school much at all was because the kids talked to me like they do to other adults. ment, a book The Nation called:, "the most expansive discussion of the , were mean. They would pick on the They talk to them like adults. I hated , kids in special ed and call us "retards."I being in special education because I didn't disability rights movement in a political, economic and global context" , think they didn't care because they were have any friends. Now I dream about , with their friends and they weren't having friends. I'm not special ed, so I can yet written. , friends with kids in special ed. Some of make friends now People take me ' the kids in special ed would pick on the seriously now Now I'm not special ed and Friday, December 10 kids in special ed too.I don't quite get I have a friend named Chuck. Chuck goes 2:45 - 3:45 PM I why but I think it was because they were to college, too. We exercise and play jealous because they didn't want to be basketball. picked on. either. PAGE 2222 8 TASK Newsletter, October 1999 PERSPECTIVES ON INDEPENDENT LIVING FROM AROUND THE WORLD

importance of managing your own life, to participate effectively in a society where everybody has the same rights and .1.2&4111 _IWZ responsibilities...".

How Independent Living Has Honduras Yolanda: "The Independent Living Changed Mg Life: Some Stories philosophy in Honduras has been in existence since the 1980's. Before that, from Latin America, one would not see people with disabilities inpublic areas, in school or Spain & Cape Verde recreational areas. Since then, the BY ROSANGELA BERMAN-BIELER change in society has been very significant. Nowadays, people with disabilities are more integrated and can be seen everywhere. Although we realize that the architectural and social barriers are still perfectly well, even with my physical Rdosangela Berman-Bieler's IDEAS extensive, they are not insurmountable." Fellowship utilized a survey to elicit disabilities.I enjoy the tranquility of my escriptions and opinions on the status home and my free time. I now receive a Mexico salary, which allows me some personal of independent living efforts in Latin America Evelia: "When I became paralyzed I pleasures after paying my bills." and countries in Europe and Africa where the told myself: 'everything has changed and main language is Spanish or Portuguese. now I belong to another sector where I *Victoria: "To date in our country Following are some personal stones by some have to help myself.' I took the initiative Independent Living and social integra- of the respondents and an analysis by Ms. to organize a group of people with all tion are realities for only a few individu- Berman-Bieler of the overall implications. kinds of disabilities and, even in my own als with a healthy financial situation. We poverty and ignorance, I tried to figure still face racial, gender and economic Latin America out a way to support the most disadvan- discrimination. And a person with a taged members of the group because they disability suffers double discrimination." Argentina can not make themselves heard. *Virginia: "My life improved a lot because there is a big difference between Brazil From the beginning, integration into the Cilia: "As a psychologist, I have living in an institution and sharing a community and the family was very house with two girlfriends. I used to always been professionally connected to difficult for me because I believed that I rehabilitation and as a person with a work in a protected workshop and now, was not useful to anybody. But when I disability, I have always been connected working for the Fundacion Prever, I started working again and founded the to the disability rights movement. To work in the laundry department where I group, these feelings disappeared. Now, participate in the group that founded the can relate to the public. those who know me or know about my Center for Independent Living of Rio de activities call me "Polvorita" (gunpow- Janeiro was a realization of an old I like to do the housekeeping, to go der) or "Capitana" (the captain) because dream that I had with other associates. I shopping, care for my personal things I like punctuality and accomplishing changed my point of view in relation to and to keep every thing in order. I share plans; I do not tolerate irresponsibility or disability with the comprehension of everything with my girlfriends. I like to indifference. When an individual with a what 'independent living' means: not to go places and I can manage myself disability needs help, we will do every- look at disability with the perception of thing in our power to respond. For me, sickness and impotence anymore, but to "I changed very much people with disabilities always come perceive life, potential and capacity to my point of view in relation to first." create models of pleasure and mobility." disability with the comprehension of what 'independent living' Panama *Alexandre: "I am a quadriplegic and means: not to look at disability Dominga: "In Panama there are no the independent living philosophy with the perception of sickness job sources for us. In our country we brought me a new way of thinking and and impotence anymore, but to have very little assistance from the acting with relation to work, leisure, perceive life, potential and government, and we would like to know culture and quality of life. Through this capacity to create models of how people in the U.S. can help us. Our new philosophy, I had to restart my pleasure and mobility° group, composed of 75 members, meets professional and personal activities. Now Lilia (Brazil) I show other people in my region the Continued on page 24 , , . PAGE 232 29. TASK Newsletter, October 1999 PERSPECTIVES ON INDEPENDENT LIVING FROM AROUND THE WORLD

How Independent Living Has position, but the most important require- the University to get my teaching degree. Changed Mg Life: Some Stories ment is that the person be a good In 1995 I finished the Masters program. professional, serving the ideals of social The situation of people with disabilities from Latin America, Spain & Cape integration of people with disabilities. in my country is very difficult because Verde most people are illiterate, they do not Continued from page 23 In the 10 years of our existence we have have any kind of training or profession mediated the employment of more than and are beggars in the streets. Our 1000 people with disabilities, providing association is trying to mobilize and to in a place lent to us by the community, them with social and psychological educate people with disabilities." but since we can not provide transporta- support, assisting the employers with tion only a few members are able to information and consultation. This is a Final Considerations participate in the meetings." pioneering model of social intervention The differences between the independent in Spain and the results are amazing. living movement in Latin or developing Today, 80% of our annual budget is countries and in Anglo-Saxon or indus- sustained by our own programs." trialized countries can be similarly compared to the cultural, social and aThe.situation ofpeople:. Africa economic aspects of human development with disabilities in my country is in each country or region. very difficult because most ;people: Cape Verde are illiterate, cic; not have:anykind, David Antonio: "In 1976, I finished 1. Paternalism of training or profession and are University, graduating in Agrarian Family values, for example, are signifi- beggars in the streets. Our'aisocia-, Technical Engineering in Portugal. The cantly stronger in the Latin culture turn is trying to mobilize and to Portuguese Government sent me for an than in other cultures. Autonomy is a educate people ;with disabilities for internship in Cuba to conclude my thesisstrong characteristic of the Anglo-Saxon a-change of attitude7:: and receive my diploma. On the first day culture. These cultural differences are Flirt& (Mozainblifite) of the internship I was in a bus accident reflected in the disability field as in the Cuban province of Guantanamo. I well as in all other aspects of society. was left with paraplegia and at that time In the predominantly Catholic Latin it seemed as if everything was finished America (we can include Portugal, Spain for me. I returned to my country using a and the African countries surveyed), the Europe wheelchair and I was surprised to find entire culture is heavily centralized on that here I received from the govern- the power of the Church and the family, Spain ment, my family and friends, all of the and thus, in the State. The natural way Eduardo: "We are a non-governmen- support I needed to create an indepen- to treat problems is through "paternal- tal organization and because official dent life.I obtained my diploma and ism": initially within the family, followed agencies provide minimal support to started to work. The government paid by the State and finally, from society in organizations such as ours, we took it 50% of the cost of my automatic car to general. upon ourselves to achieve financial facilitate my mobility and transportation. autonomy. We combined the social with I am married and have a beautiful family. Because of this type of relationship, it the business approach, applying entre- I am a Seventh Day Adventist and run a became easier for Latin countries to preneurial management criteria. For church. use campaigns such as "telethons" than example, we own a residential building to change the structure of society to with 24 rooms where individuals with I feel I have realized and perfectly integrate people with disabilities. less significant disabilities assist those integrated into society. I consider my Governmental benefits like free public with more significant challenges. process of integration a model, and it transportation exist in theory, but are not proves that society has something to gainmade viable. Buses or subway systems Financial freedom is essential to the if it creates conditions for everybody to are not accessible, and it is easier for development of independent living. achieve an independent life." people with disabilities to pay for Today, the association is comprised of palliative measures than to work for 170 employees, only 20 of whom do not Mozambique future definitive solutions. have a disability. In these cases, the Farida: "Since I was a child my positions had to be filled by exception- parents had the desire to enroll me in ally good professionals, for example, school. After high school, I studied to lawyers and journalists. It's fine if a become a teacher and started to teach on the elementary level. In 1977, I entered person with a disability qualifies for a Continued on page 25 PAGE 242 0TASH Newsletter, October 1999 PERSPECTIVES ON INDEPENDENT LIVING FROM AROUND THE WORLD

How Independent Living Has But using the term "Independent Living" mostly based on volunteer work, having Changed My Life: Some Stories or not, the people with disabilities who few professionals involved as staff. They are organized through the Disability did not provide individual services of from Latin America, Spain & Cape Rights Movement have a precise under- any kind for their peers, not even Verde standing of what it means. In most cases, counseling or housing. Continued from page 24 the term is misinterpreted by technicians or "specialists" from the rehabilitation Recently, these organizations began to and special education fields. realize that their role should not stop there. In countries where rehabilitation 2. Personal Assistance Many professionals insist on the use of reaches only 2-3% of people with The research reveals that one area that terms that people with disabilities disabilities and where the traditional reflects a large cultural difference in refuse to use, such as "normalization" or models are not acceptable anymore, independent living is the area of Personal"integration." Members of the disability people with disabilities are stepping in to Assistance Service (PAS). Analyzing the community prefer to use "right to provide and to control certain disability responses about definitions of indepen- difference" or "equalization of opportu- services, such as in the new Centers for dent living, PAS was not mentioned as annities." Independent Living of Brazil. aspiration of people with disabilities. In Latin America, this is not yet an issue From the responses we can note clear 5. Empowering Individuals under discussion, nor is it even brought conflicts among those concepts: the It is important to point out that the up.If you take into consideration the terms "normalization and integration" concept of service provision by people importance of the family as the base of propose to "soften" the differences of with disabilities for people with disabili- all social relations in the Latin culture, people with disabilities and to adapt ties is a relatively new development in you understand the reason. them to the status quo of society. The Latin countries, appearing roughly in the terms "right to difference and equaliza- late 1980's. Prior to this, the major focus According to an article written by Kathy tion of opportunities" intend to recog- of the disability rights movement was Martinez of World Institute on Disability nize and to equalize the differences, to improvement of the status of the group entitled, Cultural Adaptations of Indepen- adapt society to all members, with their as a whole -- through legislation, policy, dent Living Philosophy: Some Preliminary vast range of peculiarities, including and representation. This new develop- Observations, in the IDEAS 2000 Portfo- disabilities. ment, more or less an Independent lio'96, "in the U.S., PAS is based on the Living Movement, is characterized by assumption that all adults with disabili- The first case is stimulated by distorted services to empower people with ties want to live outside their parents' concepts and stereotyped images of disabilities. homes. You have to ask yourself, 'Whose people with disabilities going from "poor definition of independence this is?'" Ms. little-cripple" to "super-hero," typically 6. Agents of Change Martinez continues the discussion, the mentality of people who are not used Research Fellow Kathy Lysack stated in considering that "in many cultures, to co-habiting community spaces with her report entitled, IDEAS 2000 independence means being able to people with disabilities or simply Independent Living Survey: International contribute financially or otherwise to theenvision them as "patients." Findings, although the principles of family in a way that is respected by the self-determination and autonomy guide community. In the U.S. PAS is assumed 4. Providing Services most disability organizations, there is to be performed by paid strangers under The main distinction between the pressure in low-income countries to the best of circumstances. In other Independent Living Movement in provide disability services because of cultures, family members may be the industrialized countries and the Spanish/inadequate national rehabilitation preferred providers," she concludes, Portuguese speaking countries re- systems and social services." This expressing exactly the Latin culture's searched seems to be that for the Latin applies to Latin America today, where modality. countries, the provision of disability organizations of people with disabilities services is the base of the "new wave" of and parent organizations are changing 3. Terminology the Disability Rights Movement. The their original dependency on the govern- The survey also revealed that the term services now often include Independent ment to solve their problems and are "Independent Living" is not used by Living Centers or programs. taking the initiative as agents of change, many organizations in Latin America and providing the needed services them- it does not reflect the Disability Rights Until the end of the 1980's, the main and selves. Movement in which people with disabili-only activity of organizations run by ties themselves advocate for the equaliza-people with disabilities in the Latin tion of opportunities for the group. countries was advocacy. They were Continued on page 26 PAGE 25231 TAM Newsletter, October 1999 PERSPECTIVES ON INDEPENDENT LIVING FROM AROUND THE WORLD

How Independent Living Has disability are only one issue to be Changed My Life: Some Stories considered in the context of all social roles of each individual. Equal opportu- from Latin America, Spain & Cape nities, respect for individual differences 1999 TASI1 Annual Conference Verde and independent living are concepts that Continued from page 25 can be applied to most citizens in developing countries and, specifically, in Latin America.

7. Social Inclusion 10. Legacy The new approach is causing a major The application and improvement of change in the traditional social structure these concepts can be the best legacy of the region, as well as generating new from people with disabilities to society as concepts like "integrated education." we enter the next millennium. The services are leaving the hands -- and controlof the specialists and passing into the hands -- and control -- of the clients. They are starting to change from Energize yourself for the day's mere "patients" to active agents of their Reprinted with permission of Rehabilita- activities with own social inclusion. tion International (RI), publisher of One-in-Ten. Many specialists and institutions began YOGA to complain, arguing they are losing Rosangela Berman-Bieler is President of their "market." Some are realizing that the Inter-American Institute on Disabil- they must also follow the new trend and ity in Rockville, Maryland: Berman- The practice of Yoga is an ancient change their approach. Bieler is a Brailian journalist, publisher form of healing and fitness for the and disability rights advocate. Founder entire body, mind and spirit. It 8. Survival Strategy of the Independent Living Movement in doesn't matter what your present In reality, this is a political revolution, Brazil, she is also a founding member physical ability or condition is, or but different from those to which and former president of ONEDEF (the what you can or cannot do. There is Latin American countries are accus- Brazilian Organization of Persons with no competition as you practice, tomed. This time it is not from one Physical Disabilities) and CVIRJ (the you will do better and feel better. dictatorship to another, but from the Center for Independent Living of Rio de This is a time of day for anyone who dictatorship of the traditional medical Janeiro), where she currently serves as wants to explore peace of mind, and and institutional models to full citizen- Honorary President. Ms. Berman-Bieler energize yourself for the day ship and participation, with responsibil- was formerly Rehabilitation Interna- through Yoga. We'll also do breath- ity. tional Deputy Vice President for Latin ing exercises and meditation. America, and is editor of several In a final analysis, there seems to be a newsmagazines on disability issues. global process of awareness, not just Thursday, 7:00-8:00 AM in the disability field, but a crying need Rosangela Berman-Bieler is a scheduled friday, 5:15-6:15 PM of every person to fully exercise rights keynote speaker at the 1999 TASH and responsibilities to make the world a Annual Conference in Chicago. Saturday, 7:00-8:00 AM better society for all. This could very well be a "survival strategy" for human beings at this end of the century All yoga sessions will be held in the Grand Ballroom. 9. Holistic Approach As human beings, the issues related to people with disabilities have to be If you want, bring a towel. understood and treated in a holistic way, Alan Berger, Certified Yoga Instructor, as part of all social, cultural, political and Yoga Mountain Institute economic relations. The challenges of 232

BEST COPY AVAILABLE PAGE 26 TASH Newsletter, October 1999 FIRST INTERNATIONAL CONFERENCE ON SELF-DETERMINATION & INDIVIDUALIZED FUNDING Funding, Freedom & Citizenship: The First International Conference on Self-Determination & Individualized Funding Join us at the Seattle Westin, July 29-31, 2000

using the past decade individual- service providers, researchers, adminis- ized funding (also known as trators, and government officials. The The First International direct payments or individual conference will be rich in opportunity budgets) and self-determination have and outcomes, with topics and speakers Conference on become focal points for the worldwide being sufficiently broad enough to Individualized Funding & disability movement. Individualized encourage participation from other Self Determination funding is now recognized as a fundamen- disability areas including developmental tal requirement for self-determination, disability, the independent living move- July 29-31, 2000 at the Seattle Westin enabling people to purchase, and there- ment, seniors, and people involved in the fore gain control over, the supports mental health movement. Some of the Preliminary Agenda needed to enjoy meaningful lives in the topic areas that will be included in the community. program are: Saturday, July 29, 2000 1 p.m. Conference Registration Begins In the USA, the Robert Wood Johnson What do self-determination and Foundation has funded self-determinationindividualized funding mean? 2 p.m. - 5:00 p.m. projects in numerous states which How can people who need support gain Pre Conference Sessions emphasize the liberty interests of indi- real control over money? viduals with various disabilities and their What sort of professional involvement Sunday, July 30, 2000 chosen family and friends. Throughout will an individualized funding approach 7:30 a.m. Conference Registration the rest of the world, most notably in need? Canada, the United Kingdom and Austra- How can effective stakeholder alliances 8:45 a.m. - 10:15 a.m. lia, a variety of projects using individual- be established? Opening Plenary What are the major system obstructions Keynote speakers will include ized funding are now underway, largely in users of individualized funding from response to the lobbying efforts of self- that must be overcome? various disability groups from advocates and their supporters. Is there a need for community support around the world, as well as and service standards? family members and professionals This conference will provide a forum for: This will be a very accessible, inclusive, 10:45 a.m.12:15 p.m. sharing experiences and lessons and truly international conference. Concurrent Sessions learned from the many demonstration From the beginning, the core group of projects and research initiatives that are planners realized that forming strong 12:15 p.m. - 1:45 p.m. underway around the world; collaborative partnerships in the early Lunch stages of conference planning would be 1:45 p.m. - 3:15 p.m. discussing critical political, policy and critical to achieving an international Currently Concurrent Sessions implementation issues; event of significant impact. there are 8 founding organizations and several sponsoring organizations 3:45 p.m. - 5:15 p.m. .participating in international consensus committed to the effort. The conference Concurrent Sessions building activities to arrive at a shared logistics and program are being devel- view of the fundamental principles and oped under the guidance of an interna- Monday, July 31, 2000 critical components of individualized tional steering group and an interna- 8:45 a.m. - 10:15 a.m. funding and self-determination; and tional program planning group. For a Concurrent Sessions list of collaborating organizations, for building collaborative partnerships that information on becoming a sponsoring 10:45 a.m. - 12:15 p.m. will energize the international movement organization, or for more information on Concurrent Sessions in the new millennium. the conference please contact Denise Marshall at [email protected] or visit the 12:45 p.m. - 3:00 p.m. Over 1,000 people from around the world conference website at Lunch and Closing Plenary are expected to participate including http://members.home.net/directfunding Presentation of conference declaration and closing keynote people with disabilities, family members, remarks community advocates, professionals, 233

PAGE 27 TASH Newsletter, October 1999 TASH NEWSLETTER

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. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President 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. Jacki Anderson Patrick Schwarz Terms such as "people with mental retardation," "children with autism," and "in- Jacqueline Thousand 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

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Effectivechool Practice in Educating The Ethics Students with of Behavior Change Challenging Behavior

One Family's Behavior ; Support Plan

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II sitII I II

BEST COPY AVAILABLE FROM THE EXECUTIVE DIRECTOR

TABLE OF CONTENTS that the public school in which Abbie was enrolled video a typical day so that From the Executive Director Page 2 they could see what kinds of pressures View From A Board Member Page 4 Abbie encountered during her day. The Educating Students with Challenging videotape they received startled Jean and Behavior Page 8 A Parent's Perspective on Positive Behavioral Abbie's doctors. Support Page 12 Positive Behavioral Support: Making It In the tape, Abbie who is ten years old, is Happen Page 17 restrained multiple times throughout the In Memory of James Velez Page 19 day, each time for a long period of time. The Ethics of Behavior Change Page 20 The teachers alternately hold her face New Resources and Reports on Community down on the floor, kneel on her, sit on Inclusion Page 23 her and hold her from behind, seated, Positive Behavioral Supports: If I Had From the Executive Director with her arms crossed in front of her. Known Then What I Know Now Page 25 BY NANCY WEISS What Restraints Teach Page 28 Throughout, Abbie is crying or pleading, "I ready now," "I sit quiet now," "Ready These are dangerous times for to sit in seat and fold hands," "ready to people with challenging be quiet now". The teachers, ignoring behaviors. On a regular basis I her pleas, continue to restrain her. receive e-mails from parents whose Abbie's transgressions? Participating in a TASH(formerly The Association for Per- children are being physically restrained song when it was not her turn, refusing sons with Severe Handicaps) is an inter- in public and private schools. Jean to blow her nose, getting out of her seat national advocacy association of people Bowden, a mother from Massachusetts, and taking a card from another child. with disabilities, their family members, sent me a videotape of her daughter, other advocates and people who work Abbie, at school. When Abbie began Another mother wrote that she had just in the disability field. TASH actively pro- displaying challenging behavior at learned that her 3-year-old son was being motes the full inclusion and participa- home, her physicians recommended tion of persons with disabilities in all Continued on page 3 aspects of life.To receive an information 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 MISSION STATEMENT 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, TI1S11 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] 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, Acting Director 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 and inequities; 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 (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 andlitigation; 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 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]. PAGE 2236TASH Newsletter, November 1999 FROM THE EXECUTIVE DIRECTOR

From the Executive Director should get rewarded (the American people whose extraordinary behaviors Continued from page 2 work ethic) and those who do wrong need to be controlled through extraordi- need to be punished. The roots of such nary means. thinking go back to the very earliest days in this country; the Salem witch The future is not all bleak. Motivated by We compromise the public's perception trials being a one example. Often when the Hartford Courant's exposure of the of all. people with disabilities when our 1 speak with people who work in epidemic of deaths while people were treatment implies that thete are residential settings or schools, there is being restrained for "therapeutic dangerous, unpredictable people whose resistance to some of the principles of purposes," many states are introducing extraordinary behaviors need to be positive behavioral supports. They say, legislation to restrict the use of re- controlled through'extraordinar y "So we're just going to let her do straints. There are also several pieces of means. whatever she pleases? There have to be Federal legislation that propose to limit some consequences for her behavior!" seat belted into a high chair to sit in the the use of restraints and seclusion (S. It's hard for people to let go of their need dark for 2 1/2 hours daily with no books 736, S. 750 and H.R. 1313). Finally, the to punish behavior they find trouble- or toys for "quiet time." I've heard from Health Care Financing Administration some. a myriad of parents dismayed that the (HCFA) has introduced new rules to regulate the use of restraints in some program being implemented in school The second, and probably more impor- for their young children with autism facilities. Unfortunately, none of the tant reason we continue to rely on the entails excessive amounts of restraint regulatory language that I've reviewed use of aversive techniques in this and physical control. goes far enough to protect the rights of Often the sole country has to do with people's ability to point of such programs seems to be to people with disabilities. Most of these separate themselves from people with break a child's spirit as one would a wild new laws and regulations call for little disabilities.If people who are not pony. The message is "Do what you're beyond additional authorizations and labeled with a disability viewed people told - I'm in control and you're not." Is reporting. with disabilities as being as fully human this the lesson we want our children to and as worthy as themselves, it would be be learning? * It must be TASH's mission to move hard to imagine subjecting them to society toward viewing all people, cruelties that are commonplace in some Today I had a conversation with a young including people with disabilities, as settings.It may be necessary for the woman from Denmark who is in the deserving of the same rights and respect people implementing aversive methods as all other people. We use methods United States doing research on abuSes to view the people who are the recipi- against people with disabilities. She was against people with disabilities that ents of these procedures as very different astonished at the widespread use of would not be tolerated if they were used from themselves. The implementation on animals. If word got out that the dogs punishment and aversive procedures in of restraints or aversive techniques this country. She said, "When I go to at the local animal shelter were being requires the avoidance of a personal and third world countries I am not surprised trained to be compliant through the use caring relationship - when that is the to see terrible conditions but I am of painful electric shock or that cats very thing that people with challenging shocked by what I am finding here." In were being forcibly restrained for hours behaviors most need in order to change Denmark the use of punishment is on end, there would be public outcry, their behaviors. simply not so deeply ingrained in the demonstrations and condemnation. I culture. One doesn't see parents spank- once believed that people would cease to It may also be important for staff to ing their children. It is unheard of to be subjected to dehumanizing practices describe aversive procedures in clinical, physically punish people with disabili- in the name of treatment if the public detached terms, and to convince ties. This young woman had worked in was made aware of these atrocities.I do themselves that such interventions are a residential facility in Denmark. She not believe that any more. The word is necessary to free individuals with told me that a psychologist from the out. We know about it; it's been seen on significant behavior challenges from TV, yet the brutality continues. It's time United States had come to consult with their disabling conditions. This deper- the staff there. He recommended cold to put an end to these practicesnot sonalization has a cyclic effect. Such showers as a punishment for misdeeds. only because they are dehumanizing but perceptions encourage the continued The Danish staff were horrified. because they are unnecessary. implementation of demeaning procedures, which in turn results in the She asked me why I thought aversive * Some of the families who have written to me further devaluation of the recipients of about their children being restrained have come procedures are so widely used here.I such methods. We compromise the together to form a new organization called CIBRA told her that in my view there are two public's perception of all people with - Children Injured by Restraints and Aversives. forces at work. First, it seems that we disabilities when our treatment implies You can visit their web site at: hap:// have a strongly held ideology that says users. I st.net/cibra that these are dangerous, unpredictable that people who work hard and do right PAGE323 7 TASK Newsletter, November 1999 A VIEW FROM A BOARD MEMBER

Reflections about Positive Behavioral Supports BY JACKI ANDERSON

aversive vs. non-aversive interventions; the following: environmental modifica- individuals with problem behavior were tions, acquisition of acceptable behavior likely to be served in segregated schools, to replace targeted problem behavior, residential and work settings. "Behavior" improved communication skills and was typically addressed via consequences social networks, increased participation and behavior interventions were de- in inclusive schools and communities, as This is an exciting time to be signed and implemented in isolation well as other lifestyle enhancements. In involved with issues related to from other educational or life supports. addition to changes specific to positive behavioral supports.I welcome A double standard existed for individuals behavioral supports, many of these the opportunity to reflect upon the with disabilities and the general popula- current practices reflect changes in progress we have made over the past 10 tion. The title of the first Center reflects human services that are more person 15 years and the challenges we have yet the need to focus on effective interven- centered, inclusive, respectful and based to overcome. After years of working tions that were "non"-aversive, using on a standard of life as evaluated for a with individuals whose disabilities standards for acceptability that were same age peer without disabilities. included challenging behavior, initially referenced against that of the community Changes in behavioral interventions as a classroom teacher and then as an in general. Despite emerging literature have been influenced by research results, inservice and preservice trainer, I on functional analysis, research at that demonstrations of successful inclusion in became involved with the first NIDRR time typically focused on single element schools and the community, training and funded Rehabilitation Research and interventions that were rarely designed dissemination efforts and persistent Training Center (RRTC) in the area of on the basis of functional analyses. advocacy efforts for widespread imple- positive behavioral interventions. The Typically, these studies were not con- mentation of PBS. We now use quality of RRTC on Community-Referenced Non- ducted in natural, inclusive environ- life as a yardstick to develop goals and Aversive Behavior Management (1987- ments, and did not address either the measure outcomes. State and local 1992), a six university consortium long term impact on targeted behavior or policies often require person-centered directed by Rob Homer, was followed byon the lives of the people being studied. approaches to assessment and planning. a second center, the RRTC on Positive We have even legislated requirements for Behavioral Support also directed by Rob. The current climate has changed dra- addressing problem behavior with Currently, a new RRTC on Positive matically in several ways. There is a positive behavioral supports based on Behavioral Support (1998-2003) directedmuch more person centered approach to functional assessments, and IDEA '97 at by Glen Dunlap is following up and behavioral interventions as well as other the national level and some states have expanding upon the research and educational and life supports. There is even more stringent requirements (e.g. training efforts of the first two centers. widespread understanding that "behav- California and Nevada). During the course of these projects there ior" serves a communicative function have been changes in policies, practices and must be looked at in context. Yes, there is cause for celebration and the direction of research. My Behavioral interventions are comprehen- regarding the gains made to date! personal frame of reference is related to sive, multi-element, educational in my role as training coordinator of these nature, and based upon functional The articles in this issue of the Newslet- Research and Training Centers. It assessment of the target behavior, the ter provide wonderful examples of should be noted that these Centers, contexts in which the behavior occurs current practices including: a compre- although extremely productive and and the overall picture of the life of the hensive process for developing, imple- effective in furthering the technology individual. Similarly, research on PBS is menting and monitoring of positive and application of Positive Behavioral increasingly longitudinal, includes behavior support plans (Knoster & Support (PBS), are but a piece of the participants in the research process and Kincaid; Chapman, Kincaid & Shan- work in this area. typically addresses packages of multi- non); the need for long-term collabora- element interventions. These interven- tive teamwork and partnerships with Over a decade ago when the first RRTC tions are based on functional assess- began, controversy was raging regarding ments and designed to result in at least Continued on page 5 PAGE 4 2 _28TASN Newsletter, November 1999 A VIEW FROM A BOARD MEMBER

Reflections about Positive training and marketing strategies, and various aspects of his or her life. These Behavioral Supports generally working together to expand the teams work together throughout and Continued from page 4 availability of PBS practices. Extensive beyond the training process to design, experience with the Team Training implement and monitor individualized Model has demonstrated critical charac- families to develop support plans that are support plans; teristics of both the training content and relevant to and effective in the contexts process necessary to achieve ongoing in which the individual spends their the use of a longitudinal, implementation of PBS practices. The time, the complexity of effective dynamic training process where teams training content must address all aspects collaboration and the positive outcomes are supported in the application of of PBS including: of these efforts overtime (Clara Berg; assessment and intervention techniques Chapman, et. al.); and the need for a as a part of the training process. collaboration and team building person-centered planning approach to strategies, including conflict resolution; framing positive behavioral supports If your community, school, IEP team, (Knoster and Kincaid; Chapman, et. al.). family, agency etc. is considering quality of life and person investing in PBS training or an "expert" centered planning as fundamental However, as noted in Gothelf, Petroff & consultant, there are a number of themes underlying positive approaches; Teich's article, as yet, "positive behavior questions that can be asked to increase support has not automatically manifested the likelihood of success with these proactive strategies for prevent- itself in the day to day thinking, plan- endeavors. Samples of these are noted ing the occurrence of problem behavior; ning and pedagogy of most profession- below: als". Furthermore, Amos' article on functional assessment; restraints illustrates the fact that an 1. Ask potential trainers or consultants "emergency response" may still be used specifically what their philosophy is identification and instruction of as a "standard procedure" for dealing regarding PBS and the use of aversive replacement or competing behavior to with problem behavior. Weiss' article on interventions. serve the function of target behavior; the devastating impact this has on the recipients of such intervention is also 2. Follow this with a request to see curricular, instructional and described. Therefore, along with examples of support plans they or their environmental modifications; celebrating our successes, we have a trainees have developed. need for continued work in the area of the development of comprehen- Positive Behavioral Support. 3. Ask for references and ask them the sive support plans; same questions. A critical strategy for effecting change is emergency interventions and the the provision of training. A major 4. Ask what the trainers' /consultants' distinction between these and ongoing component of the RRTCs on Positive experience is with the environments positive interventions; Behavioral Support has been the Team relevant to your concerns(e.g. school, Training Inservice Training project home, work) and how they will assure a process and strategies for (1987-present). This comprehensive that support plans will fit with the monitoring and adjustment of the inservice effort has established inter- values and priorities of the "cultures" of support plan; agency state level PBS training teams in these environments. 21 states and supports this national strategies for needed systems training network to collaborate in 5. Request information regarding the changes to assure ongoing implementa- keeping abreast of the explosion of topics of training. Will it cover all tion of positive behavioral supports. information on PBS, sharing successful aspects of PBS? Critical characteristics of the training 6. Ask for information regarding the Policies and legislation have set the stage for process include: training and/or consultation process. widespread availability of positive behavioral Will it include teams and the commit- supports. Our challenge is to take advantage the use of a trainer-of trainers ment to collaboration among individuals of this opportunity - spread the word, provide model to increase the number of "ex- who may have had adversarial relation- training in positive support techniques and perts" at the local level; ships in the past? Will it include processes, assist systems with incorporating supported application of PBS techniques PBS practices and values into existing the use of a team training format and continue long enough to provide operations, and, where necessary, make use of where teams include the focus individual assistance with evaluation and needed laws to demand access to positive behavioral and the persons/agencies involved in supports. adjustments of supports? Continued on page 6 PAGE 5 239TASK Newsletter, November 1999 A VIEW FROM A BOARD MEMBER

Refection about Positive Behavioral Supports Continued from page 5 Doctoral Study in Special Education Proactive planning and research prior to investing resources in training and/or at consultation can help to avoid the all too common but often ineffective one time, one topic training or the consultation of an outside "expert" who is not commit- Lehigh Lcikretz Creative ted to a PBS model or who is but is Support Services unfamiliar with the school, family etc. University culture and thus unable to help design PBS plans that can or will be implemented The Special Education Wanted: Department is seeking A dynamic, energetic individual In summary, tremendous gains have applicants for doctoral to join our collaborative team. been made, there is a continuing and study. Training is individu- Must have experience teaching perhaps even more urgent need at this in an inclusive classroom and as time to provide training, change systems alized with an emphasis on a team member. Position (part and generally build capacity at the local applied research, positive community level; capacity that results in behavioral support, and or full time) involves providing technical assistance to area the ability of schools, service providers, inclusion. agencies, families and communities to schools in the Long Island, NY provide effective supports for an indi- and Tri-State area and teaching vidual over his or her life span. Policies Funding opportunities are workshops with a teammate. and legislation have set the stage for available for focused widespread availability of positive experience and research lakretz Creative Support Ser- behavioral supports. Our challenge is to addressing the needs of vices is committed to the belief take advantage of this opportunity - that ALL people are essential spread the word, provide training in students with emotional/ members of their communities. positive support techniques and pro- behavioral disorders, cesses, assist systems with incorporating developing instructional We believe ALL people belong PBS practices and values into existing strategies for students with and have the right to fully operations and, where necessary, mild disabilities, and participate in every aspect of advocate for laws to assure access to society. We believe diversity positive behavioral supports. providing support for is something to celebrate and individuals with significant nurture. We believe the full disabilities. potential of a community is realized only when we focus on For information contact: the gifts and capacities of each Jacki L Anderson is Professor and Coordinator member. of credential and masters degree programs in Linda Bambara the area of Moderate/Severe Disabilities in the Special Education Department of Educational Psychology at Program Coordinator If you are looking to support California State Univerity, Hayward. She is Lehigh University school systems in their efforts Co-coordinator of Training for the Rehabilita- 111 Research Drive to include all students, collabo- tion, Research and Training Center on Positive rate with a fun team, and our Behavioral Support, and a member of the TASH Bethlehem, PA 18015 and Cal-TASH Boards. belief statement sounds like Phone: 610-758-3256 you, please call Beth lakretz E-mail:[email protected] 631-789-1417. 240 BEST COPY-AVAILABLE0 PAGE 6 TASH Newsletter, November 1999 II

Magic of Belonging- Picture the Possibilities The freedom to explore life's possibilities begins with belongingThis video portrays the importance of typical experiences for all children Personal reflections and a collection of photographs capture the spirit of friendship, celebrations of diversity, and a promise of the future when everyone can play, learn, and grow together Video Published 1999 Length 7 32 minutes VHS closed captioned Price $20 00 Charting the Changing Tides of Managed Care and Long-Term Services \ se' Tape One The Philosophy of Self-Determination 0"%beib Tape Two Principles and Practices of Managed Care Tape Three The Social and Political Context of Managed Care Tape Four Self Determination in a Managed Care Environment cor more /Ion, Tape Five Getting to the Table Price $50 00 Video Series Published 1998 Length 120 minutes VHS about ,,,aterial, Petroglyphs Have you read the book "Petroglyphs" on high school inclusion? This movie version promises to reJatir. to54.4pporfk, engage the viewer in ongoing thinking and conversation about the benefits of including students with disabilities in all aspects of high school life A must see for parents, students, and educators alike (j.oluec.0),,NT-0.4"11-10, Video Published: 1998 Length: 15 minutes VHS Price: $20.00

From Vision to Reality: The Story of the New Hampshire Leadership Series fieasC This photographic manual provides an overview of the effectiveness of the Leadership Series in New Hampshire. Through this Series, leaders emerge with a clear vision for themselves and their family members with disabilities and knowledge of state-of-the-art supports for individuals with disabilities. Graduates of the Series are skilled in advocating with service providers, using the legislative process to achieve change, and organizing communities to support inclusion. The format of this manual should help the reader to understand the importance of leadership development, as well as utilize the organizational materials and forms contained in the appendix to create a training series of your own. Manual Published: 1996 Pages: 90 Price: $15.00

Planning for the Future: A Manual for Career and Life Planning Throughout the country high schools are restructuring in order to support all students to plan for their futures. This manual is a student-directed career and life planning process for use in advisory periods, courses, guidance retreats, and any other time students are together to think, dream,and plan for their futures.

Manual Published: 1996 Pages: 317 Price: $30.00 EST COPY AVAILABLE Institute on Disability/UAP, University of New Hampshire 7 Leavitt Lane, Suite 101, Durham, NH 03824-3522 Phone/TDD (603) 862-4320Fax (603) 862-0555 Email: [email protected]: http://iod.unh.edu 241 EDUCATING STUDENTS WITH CHALLENGING BEHAVIOR

providing educational programs for interventions or support strategies that children who have significant emphasize alternative skill training, emotional and/or behavioral needs Effective School environmental adaptations, and lifestyle presents a great challenge. This chal- enhancement. Key characteristics of lenge can, at times, appear overwhelm- Practice in positive approaches are: ing when children who present problem behavior are to be educated within Educating fte, Support is assessment based with typical school and community settings. Students with interventions directly linked to environmental influences and hypotheses Traditional approaches to "manage" such Challenging concerning the function(s) of the problems are often ineffective, primarily Behavior problem behavior. for two reasons. First, the common It& Support plans are comprehensive, application of behavior management in usually involving multiple interventions. schools has paid little attention to ftt, Support is proactive, involving understanding (a) who the student is, teaching alternative skills and adapting (b) what the social contexts for behavior the environment. are, and (c) what the function or pur- Support emphasizes lifestyle enhance- pose of the problem behavior is. Second, ment in inclusive settings as the context traditional management procedures have for the long-range goal of interventions. typically placed exclusive emphasis on qtt, Support reflects person-centered using unpleasant consequences to BY TIM KNOSTER AND values that honor the dignity and suppress or control student behavior, DON KINCAID preferences of the student along with his/ rather than teaching socially appropriate her family. alternative skills. fith. Support is designed for everyday settings using typically available re- Experience and the literature suggest 1. Challenging behaviors are sources. that an effective and efficient team-based context related. 'tts Support plans are collaboratively model for designing and implementing developed by the educational team in individual student programs is child- 2. Challenging behaviors serve a partnership with the student and family. centered, multi-component, and based function for the student. t'ts Support holds a broad view of success on a functional behavior assessment that includes (a) increases in the use of (Tilly, Knoster, Kovaleski, Bambara, 3. Effective interventions are based alternative skills, (b) decreases in the Dunlap, & Kincaid, 1998; Bambara & on a thorough understanding of incidence of problem behavior, and (c) Knoster, 1995 and 1998; O'Neill, Horner, the student, his or her social improvements in quality of life. Sprague, Albin, Storey, & Flannery, contexts, and the function of the 1997). Positive Behavior Support, or problem behavior. Functional Behavioral Assessment Positive Approaches, reflects these The process of coming to an understand- principles. Positive Behavior Support is 4. Positive behavior support must ing of why a student engages in problem an empirically-based, problem solving be grounded in person-centered behavior and how student behavior approach that matches a set of support- values that respect the dignity, relates to the environment is referred to ive strategies to the needs of the indi- preferences, and goals of each as functional behavioral assessment. vidual student, his or her family, and student along with his/her family. The purpose of functional behavioral others across school, home and commu- assessment is to gather both broad and nity settings. specific information in order to better understand the specific reasons for the Positive Behavior Support is based on theThe process of support begins with a student's problem behavior. In particu- belief that problem behavior results from functional behavioral assessment in lar, this type of assessment can provide unmet needs. With this central tenet, which we identify the environmental an Individualized Education Plan (IEP) positive behavior support is guided by influences of challenging behaviors, team with useful insight into (1) why a four underlying assumptions about along with individual student strengths, given student engages in problem challenging behavior and effective preferences, and interests. We then behavior, (2) when the student is most interventions: customize behavior support plans to likely to engage in the behavior of address individual needs and life circum- concern, and (3) under what conditions stances. Plans consist of multiple the student is less likely to engage in the Continued on page 9

PAGEsi) 4 2 TASK Newsletter, November 1999 EDUCATING STUDENTS WITH CHALLENGING BEHAVIOR

Effective School Practice inIn the second stage of functional behav- While specific hypotheses are essential Educating Students with ioral assessment, the IEP team gathers for building effective behavior interven- contextual information that pinpoints tion plans, they alone cannot provide a Challenging Behavior the circumstances/situations that are comprehensive understanding of the Continued from page 8 regularly associated with the occurrence student nor the complexity of conditions of problem behavior and the function of that might be negatively influencing the student's problem behavior. Basic behavior. Therefore, the IEP team problem behavior. IEP teams develop questions asked during this stage are: should next develop a global hypothesis hypothesis statements as a result of the statement. A global hypothesis attends assessment process. Hypothesis state- to broad influences in the student's life ments serve a number of purposes such as the student's skills, health, % When is the student most likely including (1) to summarize assessment preferences, daily routines, relation- to engage in the problem behavior? results, (2) to offer explanations for the ships, and general quality of life. student's problem behavior, and (3) to %What specific events or factors guide the development of a behavior Behavior Support Plans appear to be contributing to the intervention plan. Effective support plans consist of student's problem behavior? multiple interventions or support There are two common approaches to strategies. This is sometimes referred to % What function(s) does the collecting useful information in school- as a multi-component plan, which is a problem behavior serve for the based programs. The first is known as technical way of saying that the team is student? "informant methods" which involve going to do a number of different things talking with the student who presents within a close time proximity in an % What might the student be the problem behavior and to those agreed-upon manner. This includes communicating through the people who have direct contact with, and preventative, teaching, and reactive problem behavior? knowledge types of strategies. Comprehensive about, the support plans comprise (1) antecedent tkl When is the student most student. and setting event modifications, (2) the successful, and therefore less likely The second teaching of alternative skills, (3) to engage in the problem behavior? approach is consequence strategies, and (4) lifestyle "direct interventions. Each of these four % What other factors might be observa- component areas work in concert with contributing to the student's tion" which one another to contribute to meaningful problem behavior? requires outcomes that are durable over time. systematic observation of the Hypotheses student within typical daily routines As a result of conducting a functional across settings. Typically, IEP teams that behavioral assessment, the IEP team develops hypotheses. Two types of employ these two approaches in con- Assessing the impact/outcomes hypotheses are recommended to guide ducting an FBA (functional behavioral of positive behavior support the identification and selection of child- requires attention to a wider assessment) will derive adequate infor- range of variables than simply mation from which to formulate hypoth- centered interventions and strategies: specific and global hypotheses. behavior change....this wider eses. range of variables includes"quality A specific hypothesis pulls together the of life" or "ecological" outcomes for The first stage of functional behavioral students with disabilities (e.g., specific information gathered during the assessment is to gather broad informa- emotional, material and physical well tion about the student's skills, abilities, functional behavioral assessment. being; interpersonal relations; personal interests, preferences, general health, andSpecific hypotheses help to explain why development; self- well being. This type of information problem behavior occurs by describing determination; social inclusion; both fast and slow triggers (i.e., anteced- and exercising individual typically is gathered through review of ent and setting events) for the problem civil rights and existent information and evaluation data, behavior and the possible function of the responsibilities). IEP team discussions and interviews, the use of rating scales, and through person- problem behavior. centered planning processes. 243 Continued on page 10 :PAGE 9 TASK Newsletter, November 1999 EDUCATING STUDENTS WITH CHALLENGING BEHAVIOR

Effective School Practice Measuring Progress and Impact the support plan be expanded to enhance in Educating Students with Support plans are effective when they further growth? produce meaningful outcomes that are Challenging Behavior durable. Because problem behaviors If progress is not evident, your team Continued from page 9 can significantly interfere with an should ask, "Why not?" Perhaps the individual's quality of life (e.g., relation- team's hypotheses are inaccurate or the ships, access to preferred activities, plan does not adequately address the Once hypotheses have been developed inclusion) effectiveness must be influences or function of the individual's by the team, a structured process should evaluated in terms of personally problem behavior.It could be that the be used to identify and select supportive meaningful results. plan has been implemented inappropri- strategies and interventions. The ately, or that other events have hindered following is a framework that has been Behavior change serves as the essential positive outcomes. Lack of progress utilized by the Tri-State Consortium on outcome in positive behavior support. should trigger a reflective review of the Positive Behavior Support. However, over the course of the past plan.

Ultimately, making decisions about the Example of Positive Behavior effectiveness of a support plan requires Support Framework thoughtful consideration. Keep in mind that modifications will be likely as a Brainstarn student's needs and circumstances change Clarify over time. Discuss Selea Strategies/Interventions Ideuify Supports for Team Closing Thoughts Dcairrent The use of Positive Behavior Support in school based programs continues to gain momentum for a number of reasons. Primary catalysts in the field have been a) the continually increasing body of literature that documents important outcomes for students, families, and practitioners, b) While using hypotheses to select few years, the field has begun to realize new requirements in IDEA '97, and c) interventions will increase the likeli- that assessing impact/outcomes of increasing demand in the form of advo- hood of success, it is unlikely that any positive behavior support requires cacy efforts in tandem with requests for one intervention will be sufficient by attention to a wider range of variables help from practitioners. In response to itself. This is why multiple interven- than simply behavior change. For lack demand, an increasing number of out- tions are typically required by teams of a better description, we refer to this reach programs have either been ex- supporting students with challenging wider range of variables as "quality of panded or newly launched across the behavior. life" or "ecological" outcomes for country (e.g., federally funded projects students with disabilities (e.g., emo- such as the Rehabilitative Research In total, positive behavior support plans tional, material and physical well being;Training Center on Positive Behavioral are uniquely tailored to each student's interpersonal relations; personal Support, the Center for Positive Behav- needs, preferences, and long range development; self- determination; socialioral Intervention and Support, and the goals. Effective support plans take into inclusion; and exercising individual Tri-State Consortium and Regional consideration the feasibility (i.e., "do- civil rights and responsibilities). Collaborative on Positive Behavior ability") of the plan. This is accom- Support). Look for future articles in the plished by collaborating with the When a behavior support plan is TASH Newsletter that will highlight student, staff, and family members in effective, the team will realize increases valuable information concerning the the design phase of the multi-compo- in new skills, reductions in problem impact of many of these projects. nent plan to best ensure a good fit behavior, and progress toward these across settings and routines. Long- term broader lifestyle improvements. When effectiveness is the result of multi- this happens, your team should ask, component support plans that are "What's next?" Do these gains justify modified and adapted as warranted over maintaining the status quo, or should time. Continued on page 11 4.44r) PAGE 10 TASH Newsletter, November 1999 EDUCATING STUDENTS WITH CHALLENGING BEHAVIOR

Effective School Practice in Educating Students with Challenging Behavior Continued from page 10 Introducing the Youngest Members of TASH's Central Office Staff!

The (young) kid of Author's Note: In light of the importance TASH at our Summer of this topic coupled with TASH's historical Pool Party: Clockwise, stance on support of positive approaches, and from top left: TASH Board in further efforts to be responsive to its member Jorge Pineda's membership, TASH will be disseminating via nephew, Daniel; former future newsletters a resource listing on staff member Marcie Roth's Positive Approaches. In particular; this listing son, Dustin; Kelly Nelson's will highlight the names of leaders in the field son, Adam; Nancy Weiss' who have agreed to serve as state and/or daughter, Kelsey, Denise regional contacts concerning outreach on PBS. Marshall's daughter, Jessica; Dan Dotson's son, Until this listing is ready for publication, Matthew; Denise's son, TASH members interested in learning more Joshua; Kelly's son, about Positive Approaches are encouraged to Stephen; Dan's son, Tim; check out the following Web Sites on the and Kelly's son, Mike. Internet: Missing from this photo: Marcie's daughter, Jessica, Kelly's son, Ben; Tri-State Consortium on PBS Rose Holsey's children Douglas, Stacey, Keith and Lauren; and Mary www.wvu.edu/--uacdditspbs/ Bellone's children Mary, Stephanie, Nicholas and Kyle.

Rehabilitation Research Training Center on PBS and welcome to our newest addition, little Gracel www.rrtcpbs.org

Center on Positive Behavioral Interven- tion and Support www.pbis.org

Grace with her mom, Tim Knoster and Don Kincaid are Priscilla Newton collaborators on the Tri-State Consortium and Regional Collaborative on Positive Behavior Support, both federally funded outreach projects through the U.S. Department of Education's Office of Special Education. Together they have published manuscripts and training materials concerning the linkage among research, policy, and practice in positive behavior support, person-centered planning, wrap around, and inclusive reforn in schools and communities. You can reach either of them by contacting Tim Knoster at [email protected]

2511PIF PAGE 11 TASH Newsletter, November 1999 A PARENT'S PERSPECTIVE ON POSITIVE BEHAVIORAL SUPPORT

among parents, professionals, and the community?

Claire's Response:"In our situation, THE MARKETEERS: Mark had a behavior problem that was becoming excessive and would surely get A Parent's Perspective on in the way of Mark succeeding at school. We had a definite need to get some sort Positive Behavioral Support of help. At this point, the Virginia Institute for Developmental Disabilities BY CLAIRE CHAPMAN, Parent, was offering Positive Behavior Support DON KINCAID, University Affiliated training in our county and we were selected to be a part of this training. Center for Developmental Disabilities, A group was formed that included and people in Mark's daily life who would be PATRICK SHANNON, Virginia Institute familiar with the behavior of concern. for Developmental Disabilities My husband and I, his teacher, speech therapist, a transition specialist, a representative from the local Community Services Board, and a classroom aide were all invited to be a part of this training. The county school system offered the opportunity to participate in For the past several years, families, who does some volunteer work includ- this training to others, as well, in order consumers, school and agency ing serving on the Stafford County to build capacity. The county school staff in Pennsylvania, Virginia, andPublic School's Special Education system felt that others could benefit and West Virginia have benefited from the Advisory Committee (SEAC). Mark is a student at Brooke Point High School learn about PBS by participating in the activities of the Tri-State Consortium for training. They could then take this new Positive Behavior Support. The agencieswhere he continues to flourish. Mark knowledge and apply it to individuals in involved in this collaboration have been works two periods a day in the school's other settings. committed to a philosophy that includes library and does most of his academic providing person-and family-centered lessons independently. His school day support, emphasizing a broad ecological will now include job exploration. At approach for behavior support, commit- home, his self help and independent ting to a team approach, emphasizing living skills enable Mark to do things for ...families value the positive and effective supports for all himself with minimal supervision. We development of a children, and, increasing local capacity. credit Mark's on-going success to the trusting collaborative relationship with their The Tri-State Consortium has a shared opportunities afforded us through Person Centered Planning and Positive Behavior positive behavioral commitment to family, school and support teams. They community collaboration as well as a Support (PBS) training. This training feel there are other commitment to disseminating an enabled us to explore the various individuals who can empirically-based problem solving techniques that would help Mark to understand them and on process for positive behavior support handle changing situations and environ- whom they can depend that addresses five broad questions. In ments. We were also encouraged to ask to assist them in accom- this article, one parent, Claire Chapman, lots of questions and to expand Mark's plishing important goals addresses those five questions and horizons. Our family also is fortunate to in their lives and their child's life. comments on the impact that positive have an extensive support system that behavior support has had on herself, her offers constant encouragement. Our family, her son, and his team. family is grateful for the chance to have taken part in Person Centered Planning Claire's Story and Positive Behavior Support training. It has truly made a difference in our While we would focus on Mark's particular targeted behavior, the knowledge lives." "My name is Claire Chapman. My gained from our training could be husband Bob and I make our home in adapted to anyone else's individual Stafford, Virginia with sons Mark, age 20 Question 1- Establishing collabora- and Brian, age 16. I'm a homemaker tion: How do we form a strong partnership Continued on page 13 PAGE 122 4 6TASK Newsletter, November 1999 A PARENT'S PERSPECTIVE ON POSITIVE BEHAVIORAL SUPPORT

The Marketeers: A Parent's well together because we went through Claire's Response: "The PBS process Perspective on Positive the person-centered planning process can be very long and detailed. Parents, before PBS. For me, conducting Mark's however, need immediate help. Parents Behavioral Support PATH was essential. They asked me to want to see results right away, so, just Continued from page 12 describe any problems that Mark was talking about the long-term benefits of having that could get in the way of PBS may not be enough. I think families Mark's success in life, and we put them need to hear that things are going to on his PATH. PBS was mentioned as an situation. This group that came together improve immediately. One way to do approach on Mark's PATH. for the training soon became known as this would be for families to talk with `Mark's Team' and later the `Marketeers.' other families about their experiences. I When the team first came together, we try to talk with other families every went through various exercises to 'break I think that one of the keys to parent and chance I get. It helps me and I know it the ice'. For me, it soon became appar- helps them. professional collaboration was creating ent that we were all coming together on an environment for open communica- the human level. We were all going to tion.It was very clear to me right from Probably the most important approach go through the PBS training as a team, the beginning of the process that we would be observation. For us, observa- with the goal of addressing Mark's needs. were a team. The PBS trainers communi- tion came in various forms. We would Whatever predetermined views I may cated to me that I was an equal member record (in a journal) what we observed have had, for example, that I should of this team and that the team was going when the negative behavior was present. never question what the teacher or to work closely to support Mark and our We could then compare how we saw the another professional was suggesting, situation to how others saw the same family.It was also communicated that needed to be set aside.I became an everybody on the team needed to be exact situation. Another way to observe equal partner and my voice was equally was by recording our observations right open and willing to share information.I as important to the team as the voice of felt free to ask questions and was never down to the smallest details. We were other team members. I realized that made to feel dumb. The major concern very specific in recording the events these people wouldn't judge me by what the PBS trainers had was whether or not surrounding a particular incident. We I would tell them.I needed to feel safe I understood what they were telling me. would include how Mark's demeanor in telling them everything and in letting Again, I think that the person-centered was at the time, if there were any others them observe me and, my family closely. planning process helped build some trust present at the same time, and any other I needed to be honest with them and between us. environmental factors that could have relate times when Mark's behaviors were affected the behavior. at their worst. The more knowledge they Team trust was tested right from the had of Mark and our family, the more start. The school system was being a With Mark, comprehensive note taking helpful they could be." little rigid about committing staff time to was put in place. When a problem the process. The team came together to behavior was observed, a behavior chart advocate with the administrators to was completed, which related the setting, release staff to participate in the process. who else was present, antecedent This was no small accomplishment as behaviors, and consequence of the Mark is just a happier behavior. In addition to observations, this meant that the school system had to person now. I think that pay for substitute staff. Another thing consistent data collection was the key for is the best measure of our team Whoever was a constant in we did, was meet in Mark's school so the success of a compre- that it was easier for his teachers to Mark's life was asked to help us and we hensive behavior readily accepted their cooperation. For attend. It also helped because it allowed support plan. other team members who did not work example, if the bus driver saw something with Mark in the classroom to observe negative, she would contact us. Like- his class." wise, if something positive occurred, we always welcomed those comments, too. Question 2 - Broad Assessments of When Mark visited with his aunt, she the Child and Family Environment: Question 3 - Conducting Specific reported a behavior that was easily Assessments through Direct and What strategies can assist the team in getting redirected and an "incident" was Indirect Functional Assessment avoided. It was a team effort that went to know the child and family better? Approaches: What are some practical beyond the immediate team. Claire's response: "We were already a approaches for conducting functional assessments of the child and his or her team before we began the PBS process. environment? We were a good team and we worked 247 Continued on page 14 PAGE 13 TASK Newsletter, November 1999 A PARENT'S PERSPECTIVE ON POSITIVE BEHAVIORAL SUPPORT

The Marketeers: A Parent'swriting. So we turned it around and Plan: How do I know if the plan is working? Perspective on Positive asked him to write in the notebook when he had a bad day. This worked so well, Claireresponse: For me, I can say Behavioral Support that when he had bad days, he wanted to that I regularly need to remind myself of Continued from page 13 come home and read to me what he the outstanding progress Mark has made. wrote in the journal. Short of putting a I see how he easily handles a stressful camera on my head, I think the journal situation, where before he would have A strategy that proved both useful and was the best way to collect the informa- exhibited challenging behavior. Our problematic was using a journal to tion the team needed." home environment doesn't contain the record Mark's behaviors.Right after a stresses of before. Before, we almost behavior incident, I would write down Question 4 - Combining Broad and never knew when a behavior would everything that happened before, during, Specific Assessment Information present itself. We learned one way to and after it occurred. This relieved some into a Comprehensive Positive deal with the unexpected was to better of the pressure of having team members Behavior Support Plan: How does a prepare Mark the best we could. Change in my house observing everything I did. comprehensive behavior support plan fit into was never easy for Mark and he did best I was able to diligently record everything the child's home, school, and community? when his routine stayed the same. But that happened and communicate it to the we needed to help Mark adjust to the rest of the team. It wasn't always easy forClaire's Response: "With the complete possibility that perhaps our plans might me to do and it required a lot of training, cooperation of all those directly involved abruptly change and that everything with Mark, we have been able to relate would be okay anyway. We said things OOOOO what we have found to be effective ways like "I'm not sure when we will get Flexibility on our family's part and to help Mark with his behaviors. Those there" or 'we will see what happens" or on the part of the positive behav- new to Mark's environment were in- "maybe tomorrow" Mark is now able to ior support team was essential. formed of the best ways we found to help accept when we have to tell him that our To make the plan work, I had to Mark perform to his full potential. We plans have changed or if he is asking for be willing to let people into our have always reminded ourselves that our something in particular and we don't home, think critically about being aim is to 'set Mark up for success.' We have it, he is satisfied with something a parent, and change my sched- were able to show through our compre- else. He has surely made strides in ule when I needed to. The team hensive record-keeping what worked in adjusting to changes in his home and had to be willing to live by rules. ...I believed in what we were the past and what we should continue to school environment. We have learned doing, but that didn't mean I keep in place. We were always ready to how to speak to Mark and how to calm wanted our lives turned upside adjust or initiate new methods of him when the change doesn't always down. handling various situations. We always come easy. We use reassuring words to kept in mind that what didn't work let him know what a wonderful job he is before may be helpful now, and what was doing and how well he has handled a already in place may need to be renew or different situation. We allow but I found it useful.I wasn't the only evaluated. ourselves the choice to not do something one who wrote in the journal. Mark's if we feel it might be too stressful. teachers did as well. In this way, I could Flexibility on our family's part and on Mark is just a happier person now I communicate with them and they could the part of the team was essential. To think that is the best measure of the communicate with me on a daily basis make the plan work, I had to be willing success of a comprehensive behavior about how Mark was doing. If he had an to let people into our home, think support plan. Mark has done most of it incident at school, I would know about critically about being a parent, and on his own. He has matured and he is it.I liked this because I felt like I had a change my schedule when I needed to. more independent. I have changed too. better sense of what Mark's day was like The team had to be willing to live by I now have the ability to analyze a and that... surprise, surprise, most of the rules.I wanted their help and I believed situation to prevent a behavior or to look days he did not have any problems. in what we were doing, but that didn't at what went wrong. It is a skill that was There was, however, a major problem mean I wanted our lives turned upside taught to me and that has changed how I with the journal. Mark knew what the down. They respected that and we never think about Mark's behavior. Another journal was for.If he did have a bad day ran into any issues.I think that is way to assess the success of a compre- at school, he knew that his teacher because we were able to be open and hensive plan is to imagine what the would write in the journal and send it honest with each other." behaviors would be like if nothing had home with Mark. Well Mark didn't want changed. I am sure that Mark would not to get in trouble twice for one incident Question 5 - Evaluating and Revis- be doing this well. Not too long ago I so he became obsessed with the journal. ing the Positive Behavior Support He wanted to know what we were Continued on page 15 PAGE 142 48TASK Newsletter, November 1999 A PARENT'S PERSPECTIVE ON POSITIVE BEHAVIORAL SUPPORT

The Marketeers: A Parent's Finally, as Claire's story highlights, Perspective on Positive parents become much more effective Available from Options in advocates and learn how to thrive within Behavioral Support their own support structures, as well as Community Living Continued from page 14 website. www.optionsmadison.com to provide support to other parents of individuals with challenging behavior. Celebrating the Ordinary: The Special Note: This article will appear Emergence of Options in Commu- ran into someone who knew Mark when in a full length chapter in the book, nity Living as a Thoughtful his behaviors were at their worst. She Organization "Families and Positive Behavioral Support: was stunned at how good he was when By John O'Brien, Connie Lyle O'Brien, Gail Addressing the Challenge of Problem Behav- she saw him. She only knew Mark in Jacob, 1998, $25 iors and Family Contexts," edited by terms of his behaviors and now she Joseph Lucyshyn, Glen Dunlap, and knows Mark for who he really is." A way to think about support living that Richard Albin and published by Paul H. collects stories, pictures, documents and Summary Brookes Pub. Co. policies from Options and reflects on their Claire's story emphasizes many of the practical meaning: issues commonly encountered in the emergent order autonomy and support process of developing a comprehensive lead to liberation conflict clarifies beliefs Positive Behavior Support Plan. As a high ideals grounded in daily demands result of positive behavior support Claire Chapman, Parent; stretching the ordinary acknowledging activities across our three state region in Don Kincaid, University difficulty cultivating expertise the Tri-State Consortium for Positive Affiliated Center for De- relationships as resources make funding Behavior Support, we have observed velopmental Disabilities; flexibletemptation to standardize tremendous positive changes as Patrick Shannon Virginia learning as a matter of the heart chronicled by families, classroom Institute for Developmen- chewing on intractable problemsnine enduring understandings teachers, and school, community, and tal Disabilities. agency staff. Additionally, we have been The authors may be con- fortunate to document changes in tacted care of Don Kincaid Remembering The Sonl of Our Work systems when the approach becomes at the Tri-State Consor- Edited by John O'Brien and Connie Lyle embedded within training, consultation, tium for Positive Behavior O'Brien, editors, 1992, $20 teaching, and support. It has become Support, attention Tim increasingly commonplace across the Knoster, e-mail Stories written by Options' staff on the hundreds of teams we have supported to experience and meaning of see situations where individuals not sticking with people ordinary moments only show significant reductions in their everyday triumphs challenging behavior, but also learn how people change dreams family more effective and appropriate alterna- friends *fighting the system suffering tive behaviors, develop true friendships, and death words of power writing stories at work spend more time in inclusive settings, and make many more choices about their YOUR ORDER: copies of Celebrating personal and educational lives. Heard about the recently the Ordinary released special issue of JASH _copies of Remembering In the same way, families value the devoted to Interventions for Young the Soul of Our Work development of a trusting collaborative Children with Autism? Haven't ordered relationship with their PBS teams. They additional copies yet? Don't delay! Mail to Options at 22 N. 2nd St., Madison, feel there are other individuals who can Supplies are limited. WI 53704, with name, address, phone, understand them and on whom they can fax, and e-mail address. To order copies of the Fall 1999 JASH PLEASE SEND PAYMENT IN U.S. depend to assist them in accomplishing highlighting a range of best practices in DOLLARS WITH YOUR ORDER. important goals in their lives and their educational interventions, call the TASH child's life. They also are supported in Central Office at 1-800-482-8274, send Contact Options for discounts on larger developing social and personal relation- an e-mail: [email protected], or visit our web orders. ships that are of value to them in dealing site at wwwtash.org/publications/jash/ Phone: 608-249-1585 with the stresses, frustrations, joys, and specialissue.htm Fax 608-249-3372 celebrations that come with being a E-mail: [email protected] parent. PAGE 14 9 TAO! Newsletter, November 1999 A DEATH IN RESTRAINT

Lane Education Service District - Eugene, Oregon invites applications for the following positions:

Supervisor, Life Skills Education Program (two positions) Iread about it in the newspaper. It's too bad about all those people who died in restraint, but what can you do? Qualifications: One hundred and forty-three of them. Some of them were crazy. 1. Master's Degree required, with preference for focus Some were retarded. Every one of them was disruptive. Behavior like on students with moderate to significant disabilities. that needs to be controlled. A lot of them were old people; some were 2. Qualify for Oregon teaching license with special just children. Some parent's heart must be breaking, but will anyone education endorsements. else remember? I know it's a lot of deaths, but some of them hap- 3. Qualify for Oregon administrative license. pened quite a long time ago. 4. Five (5) years successful experience as licensed staff One of them was in his 30s. I can't remember his name. They say that member in public schools, including 2 years as an he was delusional. At times he had hallucinations. He became administrator, with preference given to experience with disruptive and noncompliant. It was really getting out of hand. He students who have moderate to significant disabilities. was starting to get the others upset and they were starting to act out, 5. Experience in the implementation of state and federal too. He needed to learn that behavior has its consequences. So they laws regarding the education and required related applied a form of four-point restraint. services for students with disabilities, as well as knowledge of budgetary requirements. Postural asphyxia they called it. That was the cause of death. Sometimes it happens quite quickly, sometimes, it takes a long time. Gravity and exhaustion take over. Drugs, dehydration, shock, or low muscle tone can speed it up. In his case it took three days. Lane ESD is located in Eugene, OR, a city of 125,000 situated at the southern end of the Willamette Valley about Three days is a long time for anyone to be in mechanical restraints. 100 miles south of Portland. Lane County's 4,500 square They should have known better; he wasn't the first person to die in miles extends from the Pacific Coast to the Cascade that form of restraint, but I guess it was partly his fault, too. He was Mountains. From Eugene, coastal beaches are one hour just too stubborn to give in. If he had only said that he was sorry, away to the west and snow skiing is one and one half they might have let him out of restraint a little sooner. Maybe he was hours to the east. just too out of it to know what was good for him. They said that he was still hearing voices right to the end. Anyway, it's too late now Its unfortunate, but these things happen sometimes, and I guess you Eugene and its surroundings provide an ideal living can't make an omelet without breaking a few eggs. environment, rated one of the best in the United States. Outdoor and cultural activities abound. Eugene is home Even though it happened a long time ago, this became a real famous to the University of Oregon and Lane Community College. case. People still remember it and talk about it today. Theform of Education is a high priority for the citizens of Lane four-point mechanical restraint they used back then was particularly County. bad for postural asphyxia. He was one of the first ones to die in restraint 2000 years ago. Apply to: His parents' hearts must have broken, too, just like the parents of the Human Resources, Lane Education Service others who shared his fate in recent years. I guess when we think District, P.O. Box 2680, 1200 Highway 99N, about him at Christmas and Easter, we should think about all the others who died in restraint like he did. No child of God ever should Eugene, OR 97402, 541-461-8202 have to die like that. An official Lane Education Service District applica- The author, Dick Sobsey, can be reached by e-mail at Copyright 1998. ered for this position. May be reproduced and distributed without revision for noncommercial purposes. k0 .-

PAGE 16 TASK Newsletter, November 1999 POSITIVE BEHAVIORAL SUPPORT

This article is dedicated to Adam, Eileen, the questions remain: How can we Kevin, and Jeffrey who, along with scores of support the structures and skills that students and instructional staff who have enable school administrators and passed through our programs, have made for instructional staff to stop thinking, themselves a place in our heads and hearts in positive managing, organizing, planning, and the collective struggle to implement what is teaching mechanistically? How can we right and good. Beketviorel stop acting as if a professionally structured system of control is a rational and Although it may be ingrained in Support: Makiiv just response to students with difficult people's consciousness and behavior? (Evans, 1991; Gothelf & codified in law, positive behav- It Heppe^ Brown, 1998; Lovett, 1996; Skrtic, ioral support has not yet automatically 1991). manifested itself in the day to day BY CAROLE R. GOTHELF, thinking, planning and pedagogy of most Difficult ethical dilemmas arise when professionals. Too many professionals JERRY G. PETROFF and good ideas are incomplete. We have have been teaching "the old way" for too JENNIFER TEICH learned that implementing positive long to simply change course because we behavioral support cannot be done all agree it is the right thing to do, or simply by adding it to the traditional because they have taken workshops or service model through the regulatory participated in inservice training pro- process, or by writing a few more grams. Too many new teachers are chapters in a curriculum guide. It uncertain of their positions within a requires us to take a hard, critical look at school. They may be too focused on our organizations and ourselves. In that gaining and maintaining control of their Readers of this article probably agree thatspirit, this article is not about the classrooms to worry about implementing positive behavioral support is an effec- methodologies of positive behavioral new methodologies that are not part of tive methodology, that it is a way to support, but rather on the implementa- the instructional practice of the school. achieve a quality of life, and that it is tion of a paradigm. Following are two Too many administrators feel compelled ethically and pedagogically correct. closely linked elements, each of which to remove or contain the most What is right and good is also the most makes a unique contribution to the noncompliant students in the interest of effective practice. Nonetheless, you can implementation of positive behavioral maintaining order, maximizing the still walk into many schools today and support. They are offered in recognition efficiency of the school organization and hear the following refrains: "Children of the difficult job faced by teachers and maintaining a stable environment. need to learn that their actions have administrators determined to look at consequences"; "Children need to be themselves and examine the structure of taught that they can't get everything they their programs. "It is easy to complain want"; "They have to be taught to follow about the shortcomings of the [educa- the rules"; or "They need to follow the tional] system...the harder task for us is Machiavelli said schedule". These catchphrases, beliefs, to imagine what would be better, and that "there is nothing more and attitudes summarize our reflexive then to promote, organize, fund, and difficult to take in hand, more reactions to people and situations that structure effective responses" (Mount, perilous to C014.101. Or more frighten us, that make us feel out of 1997, p.53). certain in its success, than to to control, or that we do not understand. the lead in the introduction of a new These responses, in turn, shape organiza-Eletnedk lictninistrative stoport order of things".... Administrators tional processes, practices, activities, and ancI staff empowerment. A major can begin to bring a new order to serve to define the principles that define reason for changing students' behavior things by direch.g the following the organization. The results may be a patterns is to provide them with a wider questions to their staff: What are school bureaucracy which espouses the range of options within society (Horner, we doing that works?What are we rhetoric of Positive Behavioral Support doing that does not work? (ob- but is incompatible with the philosophi- O'Neill, & Flannery, 1993). Mount (1997) points out that when people are stacles, breakdowns, rules, Proce- cal foundation and practice of positive inspired by a vision, they work hard to dures, instructional strategies, social approaches for people with difficult make it happen. Teachers who feel that relationships, teacher behavior, etc.) behavior (Lovett, 1996). they have no options and few choices are and What would we 11. to do more of? In a field that has undergone continual transformations since the early 1970s, Continued on page 18 251 PAGE 17 TASH Newsletter, November 1999 POSITIVE BEHAVIORAL SUPPORT

Positive Behemiorei Support from administrators, and suggest action to support students with difficult Ma, Icing It Happer. steps that administrators can take. behaviors takes incredible energy, time Continued from page 17 Remember, change is complex, and and commitment. You have begun a sorting through choices for change takes great and awesome undertaking. It is time. not an easy journey, and it is important to take time to rejoice in accomplish- in no position to support the develop- elstned 2: Sckool-kvel collatt,ora- ments and consensus. By celebrating we ment of a vision for meaningful life style hot, ard collegial relehon.skips. The renew feelings of self-worth, and rise to options for marginalized students. They most important priority should be meet the challenges of continued school improvement. cannot implement positive behavioral changing the culture of the organization support when they are confronted by by developing its constituency. Placing educational policies that are based on these goals first develops the school's generic schoolwide prescriptions and are capacity for implementing positive REFERENCES dependent on universal compliance. behavioral support and making effective Administrators demonstrate their changes. The purpose of goals is to Amony, M. (1994). Matters of time. In commitment to positive behavioral focus our attention. The mind will not NEA Professional Library Publication, Teacher-to-Teacher Series, School-based support when they recognize and reach toward achievement until it has change: Successful school reform acknowledge the impact that the clear objectives (Almony, 1994). It is cultivates a school's capacity to shape its immovable aspects of bureaucracy, then that the switch is turned on and the own destiny (pp. 23 - 45). West Haven, hardened by standardization and rigidity magic begins. Administrators and CT: NEA Professional Library. imposes on teachers and students instructional staff become a council of (Mount, 1997). leaders with a shared vision willing to Evans, I. M. (1991). Teaching personnel work together to improve the goals of to use state- of -the- art, nonaversive There are no simple strategies for the organization (The Effective Schools alternatives for dealing with problem changing the bureaucratic obstacles that Committee, 1994). Remember that good behavior. In A. P Kaiser & C. M. McWhorter (Eds.), Preparing personnel to constrict our ability to respond to people ideas are not adopted automatically, they work with persons with severe disabilities and to implement positive behavioral must be driven into practice with (pp. 181202). Baltimore, MD: Paul H. support. However, administrators can courageous patience. Brookes Publishing. begin this process by 'letting loose the reins of power' and establishing a We must provide teachers with opportu- Gothelf, C. R. & Brown, E (1998). structure for feedback within the nities to develop trusting collegial Participation in the education process: organization (Mount, 1997). Teachers relationships so that they can reflect on Students with severe disabilities. In M. L. and support staff become organizational their beliefs about supporting students Wehmeyer & D. J. Sands (Eds.), Making it happen: Student involvement in education stakeholders, by identifying ways that with difficult behavior and work through planning, decision making, and instruc- their school needs to change to support the feelings that inhibit their ability to tion (pp. 99-122). Baltimore, MD: Paul H. new directions. change (Sage & Burrello, 1994). By Brookes Publishing. supporting each other, teachers can Machiavelli said that "there is nothing relieve the stress associated with change Gothelf, C. R. & Mercer, C. A. (1996). more difficult to take in hand, more and can share ideas to make the tasks Preventing behavior problems: A problem- perilous to conduct or more certain in itsless overwhelming. We need to move solving approach to restructuring success, than to take the lead in the from external "expert" staff development classrooms. TASH Newsletter, 22(7), 21- introduction of a new order of things" programs to internal shared professional 22. (Ledeen, 1999, p. 19). Administrators development; from teacher isolation to Homer, R. H., O'Neill, R. E., & Flannery can begin to bring a new order to things teacher collaboration and mutual K. B. (1993). Effective behavior support by directing the following questions to support. plans. In M. Snell (Ed.), Instruction of their staff: What are we doing that students with severe disabilities (4th ed.) works? What are we doing that does not Positive behavioral support takes (pp. 184214). New York: Macmillan work? (obstacles, breakdowns, rules, planning. To find much-needed plan- Publishing. procedures, instructional strategies, ning time see if schedules can be juggled social relationships, teacher behavior, if teachers can be relieved by support Ledeen, M. A. (1999). Machiavelli on etc), and, What would we like to do staff, or if classes can team up. The modern leadership : Why Machiavelli's iron rules are as timely and important more of? (Gothelf & Mercer, 1996). processes elaborated in the first element today as five centuries ago. New York: St Mount (1997) enhances this process by will generate these kinds of ideas. Martins Press. suggesting that stakeholders identify concrete ideas that put forth better So we have come full circle.It is time to alternatives, identify what they need celebrate. The school change necessary Continued on page 31 PAGE., 1825 2TASH Newsletter, November 1999 IN MEMORIAM: JAMES VELEZ

...''' ''..1 .0-,mot IA .1...... _

rf --1-. In Memory of a Young Man - James Velez 4/24/74 - 10/27/99

BY FREDDA BROWN AND CHRIS OLIVA

We first met James in 1994 when he was 20 years old. As we decisions. How many empty words of excuse and regret sat outside in the cold (he was afraid staff would tape our were spoken to James in his life? conversations if we stayed indoors), he said he wanted more than anything to live in New York near his parents, sister, After an inexcusably long time, James finally moved to and his many, many loving relatives. Although he was living an apartment near his family fulfilling his life long in a well-kept suburban home on a quiet street, he received a dream! He accomplished much- he started to learn to variety of aversive therapies, including hundreds and drive, to visit people, to have visitors at his place, and to hundreds of contingent electric shocks. The aversive learn to think like a free man; no easy task for a person treatment model was planfully carried over between home who spent so many years in coercive situations. James and school. His "positive reinforcement" program included wowed an audience when he spoke at the 1997 annual earning points that were exchangeable for social interactions,TASH conference in Boston (perhaps his first visit to phone calls to his family, and normally prepared food (versus Boston without shock devices attached.) Finally, James nutritionally correct but tepid, bland, pureed food). got to say "no" and "yes" in his life and have these words mean something. He could choose to take risks, and This meeting was in a professional context-but it took not an succeed as well as "mess up" as do people not labeled instant before we knew that he would become a friend and with a disability. a teacher. It took not an instant before we saw his humor, wit, charm, spirit, and of course, those big sparkling dark James taught us that it takes more than just good ideas eyes. We marveled as James explained and critiqued his or good intentions to live a self-determined life.It takes contingency management plan -- with more insight than a full range and depth of efforts woven into a delicately most professionals with formal behavioral training. We balanced mosaic to facilitate a dignified and autonomous knew at once that James would touch our lives, and our life. But at this point in time, the mosaic for people like family's lives, forever. James is too fragile -- too easy to damage it and to break it.If it takes only one budget cut or the signature of one When James finally returned to New York he (disgracefully) person to destroy the vision and the dream, then we 41 was temporarily "placed" in a state institution where he have not truly succeeded -not yet. How much of James' remained for about two more years. Here, there were no life and death was affected by a system out of balance? "aversives;" but also there was no dignity, nor humanity. The hundreds of thousands of dollars previously available to James had a gift, an ability to see through people, and "therapeutically" punish him while he resided out-of-state, know if they were warm and loving souls, or sense if were suddenly not available to support him in a humane they were not worth knowing. And when he knew they fashion in his own community. Somehow, the outrageous were warm and loving people, he would quickly and cost of aversives could be easily approved and justified, but honestly embrace them in his own personal way. And the cost of humane support required much more approval when he embraced you, you felt privileged by the purity and justification. While some bureaucrats mechanically of his feelings. shuffled papers to secure the necessary approvals, James lived day after day in an environment not fit for people. It is amazing how many people were supposed to be Inquiries as to how this situation could possibly exist "teachers" of James. What really happened to us was resulted in empty, bureaucratic responses. No one person that James became our teacher. He taught us about love, would ever take responsibility; it was the "system" (e.g., the persistence, strength, good will, and sincerity, as well as budget cap; the time in the fiscal year; the paperwork; the the value of our dreams. He will be our teacher holdup in another department; the upcoming holidays). and friend always and he will be in our hearts But.... who makes up a system? Someone somewhere makes forever.

PAGE 192) TASK Newsletter, November 1999 THE ETHICS OF BEHAVIOR CHANGE

Last May the Hartford Courant documented over 150 recent cases in which children or adults with disabilities died while being restrained. The case histories read like a catalogue of power struggles. One man's behavior escalated It May Be Non-Aversive, after he had asked to watch television But Is It Non- Coercive ?: and was told that TV was not allowed during the day, another man became The Ethics of upset after he was denied access to the bathroom, a woman died for the crime of not being willing to hand a family Behavior Change photograph over to staff. While these BY NANCY WEISS cases represent the worst imaginable result, power struggles such as these are commonplace. Institutional, community and educational service systems are often designed to restrict freedom of choice.

When power is taken from someone, it is The technology of behavior modification is life - they are characterized by collabora- a natural response for him/her to act to ethically neutral.It can be used by villain tion versus control and focus more on or saint.There is nothing in a methodol- illumination (or understanding the reassert control. When people respond in frustration, their behaviors are ogy which determines the values governing meaning of the behavior from the its use. (B.E Skinner, 1971)' individual's point of view) than on interpreted as signaling the need for even elimination (or reducing behaviors we more restrictive environments. Rather Iam concerned that those of us who perceive to be difficult or unacceptable). than difficult behaviors being viewed as would never use painful or humiliat- an indication to re-think the necessity ing techniques to change the behav- There is no question that some people for restricting people's right to self- ior of the people we support fail to with disabilities have behaviors that are determine, they are often viewed as consider the potential ethical issues dangerous or seriously disruptive.I am signaling the need for even more strin- inherent in our work. It is as if we not a person who believes that because gent controls. Behaviors escalate further believe that if we are not doing things all people are to be valued and respected in response, and the cycle goes unbro- that are by their nature inhumane, we areequally that all behaviors are equally ken, often until tragedy results, if not in necessarily acting humanely. acceptable. Some people (both with and loss of life, surely in the loss of quality of without disabilities) exhibit behaviors life. that interfere with the quality of their lives and the lives of the people with

whom they interact. We have a responsi- Restrictive Our first response in encountering a Treatment/Environment difficult behavior should not be to ask bility to offer supports for people to "how can we apply technology to reduce change behaviors that are dangerous, this behavior?" Rather, initial disruptive or interfere with their ability Confirmation of Need responses should focus on meaningful, to achieve their goals for themselves. for Aversive /Restrictive Treatment Need to Assort collaborative attempts to determine the Our responsibility, however, is to do this One's Self nature of the distress the person may be in ways that value, enhance and include f communicating through his/her people. Cycle of Control behavior and practical changes to the nature and quality of the person's life. Many ethical problems in the design and implementation of behavior programs relate to issues of control. Whenever The late Herb Lovett is credited with one person is trying to change the coining the term positive approaches. In behavior of another there is an inherent the spirit in which Lovett intended the imbalance of power. People with disabili- term, it is important to recognize that ties are often denied opportunities to every approach that does not rely on make basic life choices and are subjected aversive procedures is not by default a to unreasonable amounts of control as a positive approach. Positive approaches matter of course. Continued on page 21 are only those which enhance a person's 254 PAGE 20 IASI. Newsletter, November 1999 THE ETHICS OF BEHAVIOR CHANGE

It May Be Non-Aversive, sources and administrators expect quick Our first response in encountering a But Is It Non - Coercive ?: resolution of unpleasant behaviors, we difficult behavior should not be to ask deliver. New requirements of IDEA '97 "how can we apply technology to reduce The Ethics of Behavior means the use of Positive Behavior this behavior?" Rather initial responses Change Supports in school-based programs should focus on meaningful, collabora- Continued from page 20 continues to gain momentum. See tive attempts to determine the nature of Knoster and Kincaid's article on Effective the distress the person may be communi- School Practice in Educating Students cating through his/her behavior and with Problem Behavior beginning on practical changes to the nature and page 8 of this Newsletter.While this is quality of the person's life. Despite the progress we have made in an important and positive trend, over- eliminating aversive programs, this reliance on any behavioral technology Not long ago I visited a small group unfortunate cycle still operates in can result in a failure to view people's home and talked with Roger and his staff programs that seek to control too many behaviors as valid and acceptable. about the behavior program that was in aspects of people's lives. No one emerges place for him. Staff explained to me that victorious from such power struggles. We are often so ready to identify the Roger's behavior problem was that he behavior, isolate its characteristics, asked questions repeatedly. His behavior Though it can't be argued that need is measure it, and design a program to program required that he sit in the staff the mother of invention, it is also true reduce it that we forget to ask the basic office alone for twenty minutes if he that invention is the mother of need. questions we would hope someone asked the same question more than once. None of us needed cell phones, fax would ask of us, were we limited to "For example," one staff person told me, machines or e-mail fifteen years ago asserting ourselves through our behav- "he'll walk in from the day program and now that they exist we don't know how iors. These are questions such as: he'll say, 'we're going to watch the game we could live without them. We become tonight, right?' I'll tell him yes. Ten addicted to using what we have; what we V Who is this person? minutes later, he'll say, 'we're going to know In the same way as we have V What important needs are unmet for watch that game tonight, aren't we?' I'll become addicted to the technology of him/her? tell him yes again. The third time, he electronic communication, we have V What would he/she change about his/ goes into the office for twenty minutes." become addicted to the technology of her life? Roger understood the mechanics of his behavior modification. V What has changed about his/her life behavior program but seemed confused that may not have been consistent with by its necessity. "Why is it so bad to ask what he/she would have chosen? questions?" he pondered, "a lot of times V With whom does he/she have mean- they tell me to do something over and ingful relationships? over again."

It is important that we answer these I asked the staff member if he had any Positive approaches are only those questions to unlock the secrets behind thoughts about why Roger might ask which enhance a person's life -- the behaviors. If we could offer people questions repeatedly. At first he said that they are characterized by more meaningful lives, many difficult he didn't know. Since he knew Roger collaboration versus control and behaviors would resolve themselves. reasonably well, I asked him to try to focus more on illuminationll (or Clearly, many of the people we support come up with some likely theories. He understanding the meaning of the can't easily articulate answers to ques- first suggested that Roger was doing it behavior from the individual's tions like the ones above. Likely this is for attention, but with further discus- point of view) than on elimination the very reason they resorted to extraor- sion, he came up with several other good (or reducing behaviors we perceive dinary behaviors as a means of self- possibilities. One possibility was that in **to be difficult or unacceptable). expression in the first place. Often, the past there may not have been follow- however, the people who know the through when promises were made so person best can come up with some Roger was, in essence, re-confirming the plausible theories worthy of further commitment. His second thought was exploration. When the people who workthat maybe this was Roger's only way to with the individual day-to-day are asked initiate social contacts. Finally, he We have to be careful that the systems in to put themselves in the place of the suggested that maybe Roger actually which we work do not encourage over- person with disabilities and think about found it hard to hold the idea in his reliance on behavioral interventions. In the questions above, much can be mind; that as time went on he really did architecture, the rule of thumb is "form learned. When there are involved family not remember what had been promised. follows function"; in human services it is members, their participation in this "form follows funding". When funding Continued on page 22 process is invaluable. RPc-rrnov mmit API PAGE 2123 5 TASKNewsletter, November 1999 THE ETHICS OF BEHAVIOR CHANGE

It May Be Non-Aversive, the quest for attention as a shortcoming, need is unmet for them. Herb Lovett But Is It Non - Coercive ?: we were struck by how unfortunate it is said, "My experience has been that that someone would need to act in extreme behavior often comes from not The Ethics of Behavior remarkable ways to be noticed and we feeling listened to. Just as repressive Change responded in loving concern? organizational or political systems lead Continued from page 21 to aggression and revolution, the most Joan loved music. Each day when she profoundly disturbing behavior is often returned home from school she would sitfound in... unresponsive service sys- quietly for awhile listening to her tems." (p.6). favorite tapes. Her parents met with a psychologist to design a behavior Laura was in a regular fourth grade How different services program for Joan's behavior of destroying classroom but, because of her disabili- property. He started by asking her ties, her teacher didn't include her in would look if we were parents to list those things Joan found many of the learning activities in which reinforcing. Music was at the top of the the other children participated. The as motivated toward list.It was decided that her parents teacher had selected a few activities for would hold Joan's cassettes. When Joan Laura that she felt were better suited to being humane as we did not destroy anything all day she Laura's abilities. These included sorting are toward imposing would be offered her choice of a cassette pegs by color, putting together a puzzle, to listen to for a half-hour before bed. and matching objects to pictures on a controls. Joan's psychologist was shocked when grid. Laura showed curiosity about the his program was criticized"but it's all activities of the other children. Their based on positive reinforcement!" he activities were generally of a more active insisted. and participatory nature. Laura would often wander around the classroom I commended the staff person for coming A person with a developmental disability disrupting the work of the other stu- up with several excellent possibilities once said, "I've got it figured out. You dents. When she was redirected back to and asked the staff person what he better not tell them what you like or her seat and her activities, Laura would thought would happen, if, the second they'll make you earn it and you better often become upset, throwing her time the question was asked, he sat not tell them what you don't like or materials on the floor and occasionally down with Roger and said something they'll use it against you"(Henning, even pushing and hitting the teacher. like: "Gee, I can tell you're worried 1991, lecture). Forcing adults to earn about this.I don't want you to worry, privileges that are (or should be) because I've given you my word. I want available to them already, or that are to give you something that might help.I available to others, raises serious ethical Attempting to change am writing my promise to watch the considerations. Programs that rely behavior,to adapt to an game with you on this piece of paper. heavily on positive reinforcement that is inappropriate environ- I'm going to sign my name. I don't sign not directly related to the function of ment or inappropriate my name unless I'm really going to keep that person's behavior are contrived and demands is ethically a promise. If you get worried again, intrusive.It is not necessary to bribe suspect. maybe you could look at this paper and people to do things they find meaningful it will help to remind you that I've given or pleasurable. When we are tempted to my word. If you're still worried after youimplement some complex system of look at the paper, you can come ask me positive reinforcement, it is probably a again.I don't want you to be worried." good time to step back and look at the How different services would look if we big picture - to ask ourselves if there Laura's teacher enlisted the help of the were as motivated toward being humane aren't meaningful changes that could be school's behavior specialist to develop a as we are toward imposing controls. made in this person's life. The message program to encourage Laura to stay in we should be attempting to communi- her seat, attend to her work, and to After this conversation I gave some more cate should not be "I'm in control and reduce Laura's aggressive behavior. She thought to the staff person's initial you're not" but, rather, that the person's told the behavior specialist that Laura hypothesis - that Roger was asking preferences, goals and feelings are was noncompliant. The behavior questions for attention. It's an observa- worthy and deserve to be heard. specialist was happy to begin designing a tion that is often said with a level if careful system of reinforcement to assist disdain, "it's just attention-seeking People with seriously difficult behaviors act not out of choice but because some behavior." What if, rather than seeing Continued on page 27 PAGE 221, TASK Newsletter, November 1999 CENTER ON HUMAN POLICY

Community Integration Policy and Practice Abstracts, Fifth Edition (1999) prepared by Perri Harris is the fifth edition of a compilation of recent journal articles relevant to community inclusion for people with developmental disabilities and includes topics of education, employment, policy, communication and supported living. (82 pages) $4.50

"My House Is Covered with Papers!" Reflections on a Generation of Active Citizenship (1999) by Connie Lyle O'Brien and John O'Brien tells the stories of five women, mothers of children with disabilities, who have made and continue to make important contributions to the civic work of The Center on Human Policy, COMMUNITY SUPPORTS! shaping policies and programs that offer people with developmental through its National Resource INCLUSION Center on Supported Living and Community Engagement: A Necessary disabilities the opportunities and Choice and its subcontracts with the Condition for Self-Determination and supports they need to be full and University of Minnesota's Research and Individual Funding (1999) by John responsible citizens. (35 pages) $2.80 Training Center on Community Living O'Brien is a paper based on a meeting of and Responsive Systems Associates, a working group of family members, Annotated Bibliography on Commu- distributes a variety of reports and service workers, and people with nity Integration, Third Edition (1998) edited by Mair Hall and Pam resources on the inclusion of people withdisabilities from Ontario, Canada, severe disabilities into community life. concerned about building a strong Walker describes many of the best resources on community integration for The project would like to make these foundation for community living. (19 reports available to you at cost. Due to pages) $2.35 people with developmental and other space limitations this is a partial listing disabilities. A new and expanded of the Center's newest publications; a From Community Presence to Sense of version of previous editions. (270 complete list is available upon request. Place: Community Experiences of pages) $15.00 Adults with Developmental Disabilities One Day at a Time: Changing a System ALTERNATIVE DAY ACTIVITIES (1999) by Pam Walker is a reprint of an to Realize a Dream (1998) by John kb All Business: A Site Visit Report on article (DASH, 24(1), 23-32) which O'Brien, Ray Browning, and Connie Working Order, Sharpsburg, Pennsylva- discusses community experiences and nia (1998) by Marjorie E Olney and the importance of place, and a sense of Lyle O'Brien is a paper about lessons for Perri Harris describes an organization in place, for community inclusion and service system change based on the story of Ray Browning, who moved from a Pennsylvania designed to assist people membership. (10 pages) $1.95 with and without disabilities to develop nursing home to his own home. (13 pages) business ventures. (18 pages) $2.50 Building Stronger Communities For All: $2.40 Thoughts About Community Participa- DISABILITY STUDIES "This is Still a Work in Progress": tion for People with Developmental Common Ground, Littleton, New Disabilities (1999) by Robert Bogdan Information Package on Disability Hampshire (1998) by Mair Hall and Pamand Steven J. Taylor is a paper that Studies (1998) by Perri Harris and Lori Lewin includes information on recent Walker describes a program that closed presents some thoughts and observations its workshops and supports all people in on what It means for people with books, academic programs, and web sites about disability studies. Also included integrated daytime activities. (25 pages) developmental disabilities to be part of are reprints of two articles about disabil- $2.70 the community. (17 pages)$2.20 ity studies, one which includes an extensive bibliography, and the other an

257 Continued on page 24 PAGE 23 TASK Newsletter, November 1999 CENTER ON HUMAN POLICY

New Resources and Reports on complexities of the closure of an institu- "Learning Community" Discussion Community Inclusion tion, Brandon Training School, in Paper:Self-Determination in Vermont Continued from page 23 Vermont. (53 pages) $3.55 (1999) by Pam Walker, Bonnie Shoultz, Mair Hall, and Perri Harris is a report "I Can See No Downside to the Closure discussing lessons and issues raised of SDC": A Documentary History of theduring the initial stages of implementa- article and bibliography about develop- Closure of Syracuse Developmental tion of the Vermont Self-Determination mental disabilities and disability studies. Center 1854-1998 (1999) compiled by Project. (30 pages) $2.65 (106 pages) $5.40 Mair Hall, Pen-i Harris, and Lori Lewin, and edited by Steven J. Taylor, this is a Focus on Vermont's Self-Determination documentary history of the events Project (1998) by John O'Brien is a FAITH COMMUNITIES AND leading up to the closure of Syracuse summary of a focus group discussion SPIRITUALITY Developmental Center, which was during initial stages of implementation Resource Packet on Disability, Spiritual- founded in 1854 as the second public of the Vermont Self-Determination ity, and Healing (1999) by the Rev. institution for people with mental Project. (13 pages) $1.95 Nancy Lane presents articles, an anno- retardation in North America. The tated bibliography, a course syllabus, and package includes essays, reflections, and Fact Sheet: Summary of Self-Determi- handouts on disability and spirituality. newspaper clippings. Although this nation (1998) by Michael J. Kennedy Much of the emphasis in this package is compilation of materials relates specifi- and Lori Lewin summarizes what self- on the spiritual healing of wounds cally to the closure of the Syracuse determination is and is not, the prin- created within individuals by attitudes institution, some general lessons about ciples of self-determination, the values toward and discrimination against institutional closure are discussed. (95 supported by self-determination, and a people with disabilities. (181 pages) pages). $4.60 call for changes in the system in order $9.35 for self-determination to truly succeed. INTERNET RESOURCES (2 pages)Free. Faith Communities and Inclusion of Fact Sheet: Summary of Internet Terms People with Developmental Disabilities and Resources (1999) by Rachael Zubal To order these publications, write to: (1998) by Mair Hall and Philip Lambert and Mair Hall is written specifically for Rachael A. Zubal, Center on Human includes resources and information on people with disabilities and summarizes Policy, Syracuse University, School of books, articles, newsletters, and organi- Internet terms in basic, easy-to-under- Education, 805 South Crouse Avenue, zations that work to include people with stand ways, and includes a brief list of Syracuse, NY 13244-2280, (Voice) developmental disabilities in the main- Internet resources and tools. (2 pages) 1-800-894-0826; (Fax) 315-443-4338; stream of faith communities. Also Free. E-mail: thechp @sued.syr.edu included are selected reprints that give examples of this work. (77 pages) $4.25 PERSON-CENTERED PLANNING For postage and handling, please include 15% or Person Centered Planned Has Arrived... $2.00 whichever is the greater amount based on HOUSING Or Has It? (1997) by Connie Lyle the total of your order. All orders must be prepaid Guiding People Home: The Role of O'Brien, John O'Brien, and Beth Mount is unless an institutional purchase order is submitted. Wisconsin's Supported Housing Spe- Please make your checks payable to Syracuse a reprint of an article (Mental Retarda- cialist (1999) by John O'Brien and University. Please note that telephone orders will tion, 35(6), 480-483) that describes the Connie Lyle O'Brien with Marcie Brost not be accepted. way one approach to person centered describes the role of Wisconsin's Sup- planning developed, and discusses issues ported Housing Specialist in creating The preparation of this article was supported that have arisen as it has become widely effective relationships, relationships that in part by the National Resource Center on used. (4 pages) $1.60 Supported Living and Choice, Center on not only bring people with disabilities Human Policy, School of Education, Syracuse along the path to their own front doors, RECREATION/LEISURE University, through the U.S. Department of but also lay a foundation for new Promoting Inclusion in Recreation and Education, Office of Special Education and housing possibilities for other people Leisure Activities: An Information Rehabilitative Services, National Institute on with disabilities. (31 pages) $2.65 Disability and Rehabilitation Research Package (1999) compiled by Pam (NIDRR), through Contract No. Walker contains an overview, selected INSTITUTION CLOSURE H133A990001. No endorsement by the U.S. articles, and an annotated bibliography. Department of Education should be inferred. Closing Brandon Training School: A (52 pages) $3.45 Vermont Story (1999) by Bonnie The Center on Human Policy subcontracts with TASH for space in this newslet- Shoultz, Pam Walker, Kathy Hulgin, Bob ter. Bogdan, Steve Taylor, and Charles SELF-ADVOCACY AND SELF- DETERMINATION Moseley is a report examining the 8 PAGE 24 TASK Newsletter, November1999 POSITIVE BEHAVIORAL SUPPORTS

If I had known then what I Kenny. Many different methods know now, what would have of communication were intro- been different? Who knows! duced with the hope that if he Do I want to complain about our could communicate his needs, journey? Probably not! his self-abusive behaviors would Positive Behaviora diminish or cease. We have come a long way as a Supports or family, as individuals and as We tried to using our voices, FM mentors of good behaviors, not "If I had known then units, American Sign Language only with our son, who is (ASL), object cues, calendar deafblind, but with our other what I know now..." boxes, various smells and two children as well. textures. The hitting continued. Even a helmet and Kenny's life got off to a rocky BY CLARA BERG medication were unsuccessful in start. He was born prematurely stopping the self-abusive and was hospitalized for eight behaviors. months. The doctors cautioned us not to expect him to make it When Kenny was 10 years old, I to his second birthday. After attended a workshop that Kenny finally came home from helped me to comprehend the the hospital, we invested all of our a hit with his knuckles on the head or seriousness of these behaviors. I became efforts into maintaining his health and body. Then, since this motion appar- very motivated to find an immediate well-being, hoping that he might make it ently did not satisfy his need for self- solution before the behaviors were through that second year. stimulation, he learned to hit his head becoming worse. I began to get the idea against sharp edges or hard surfaces. At that some students, Kenny being one of Fortunately, the doctors' predictions times, he would strike himself so hard, them, needed a more systematic method were wrong. He made it to birthday we could hear them even if we were in a of planning on his daily activities.I number two and beyond. In fact, we different room. began to learn about positive behavior recently celebrated his 19th birthday! support planning. The more rread and Surprisingly, he never injured or bruised learned about it, the more eager we When did Kenny start displaying himself. As a matter of fact, we sus- became to put it into practice. challenging behaviors? I would have to pected that he developed a "built-in say since birth. He was born a fighter helmet" on his scalp. We used to wonder Allow me to tell you in my own words and constantly fought to prove that he if all children with deafblindness tried to about the components of our behavioral could make it and get his way. He hurt themselves. Did they get some type support plan. started displaying self-injurious behav- of visual stimulation when they hit their iors as soon as he developed some heads? Functional analysis; muscle tone in his tiny arms, at age two. In the school and at home, we started He would bring his little hands to hit his We participated in various workshops to keeping data of when the behaviors head, or slap his face. As he grew learn more about self-abusive behaviors. occurred, how often they occurred and stronger, the hit or slap was followed by We asked many questions and received what triggered them. We assessed many different answers from profession- Kenny and his environment to enhance als in the field. the effectiveness of instruction. These We came to the realization that we detailed assessments were performed couldn't apply standard procedures As the years went by and Kenny grew using the Motivation Assessment Scale because they didn't work. We stronger and bigger, his behaviors (MAS). We collected scatter plot data in needed to find out what in the became more harmful. Communication school and at home, concentrating on environment triggered Kenny's became the main concern. We did not one specific behavior at a time. During behaviors, and what was Kenny know much about teaching a boy who this period of time we would get trying to communicate to us through was deafblind to communicate his needs together with the professionals and his behaviors....We were convinced and wants with his hands. We had to interpret all these data forms. We could that we were doing the "right thing" learn new communication systems at the not have done it without them, and they by following standard procedures on same time that we were teaching them to could not have done it without us. an individual basis. him. We give a lot of credit to the schools that worked with us and with Continued on page 26 PAGE 2525 9TAM Newsletter, November 1999 POSITIVE BEHAVIORAL SUPPORTS

Positive Behavioral Supports or and utilized elements that we learned If I had known then what I through the functional analysis that We worked in close partnership with the know now would be effective to teach him many professionals, and the points that we skills and different ways of communicat- Continued from page 25 would like to share with you are: ing. Positive outlook - We know our son/ Short-term prevention strategies: This process helped all of us to get to daughter "can do it," we trust them, we The functional analysis helped us predict know Kenny better and to be able to want to maximize his/her potential. We not only when behaviors would occur, identify what actions, people, situations want to work with professionals who but when Kenny was happy, what made and places he liked or disliked. We share our vision. him happy, and when he was busy, what decided to work around those issues Effective communication - We express kept him busy and not engaged in self- specifically. ourselves with accurate information abusive behaviors. and details without getting sidetracked The functional analysis and Personal by other issues that are irrelevant to the Together with the school we began to Future Planning (PFP) were done at the situation. identify Kenny's preferred activities and same time that we began planning for Perseverance - Behaviors do not change we began using simple methods to Kenny's future. In a short period we overnight. We tried many different prevent Kenny from hitting. We used the learned more about Kenny and got to approaches until we found one that we preferred activities to teach him new know him better than we had in years. felt comfortable with. We applied it skills. When he was a little boy, we had repeatedly until it worked. It took years! discussed IEPs and schedules and Sense of humor - It's easier to engage in a Kenny likes to be outdoors; he was able routines that would benefit Kenny's challenging project if we can share a to learn how to walk with his cane education and well being. We were smile with other people. Let others know more independently. Kenny enjoys loud convinced that we were doing the "right we enjoy their company and we want noices and motion; the school assigned thing" by following standard procedures them around us. We can find humor in him the job of collecting recycling cans on an individual basis. many aspect of our lives. and compressing them. Instinct -Trust your instinct in any We came to the realization that we aspect related to your family. We know Kenny is happy in places with a variety couldn't apply standard procedures our families best!! of different textures and smells. At because they didn't work. We needed to the present time, he spends weekend find out what in the environment I know, I know. These five points form mornings working as a volunteer at a triggered Kenny's behaviors, and what the word "Pepsi." This was not inten- farm. was Kenny trying to communicate to us tional. Now that I come to think about through his behaviors.If he would not it, parents and professionals should Instructional and environmental cooperate starting an activity, we celebrate their partnerships with the adaptations: wouldn't tell him "it's time to..." rather energy that a "Pepsi" brings, and enjoy Methods of instructions were changed "It's okay if you don't want to start the flavor of knowing that they have the and adapted specifically for Kenny. He now Let's do something else that you unique chemestry that supports their needed to learn when to ask for a like and then we'll come back again." common goals. "break" during an activity. We needed to learn to "adjust" our teaching pace to fit We know kids behave differently at 1r his learning style. Kenny got to spend home with their families than they do more time with the staff and students with their teachers at school. Each family Clara Berg was born in Uruguay and has that he preferred to be with. has different dynamics and philosophies lived in the United States for 22 years. She about functional, social and moral issues, and her husband, Jake, have three children, Teaching alternative, adaptive behav- as well as their own priorities and Sheldon 20, Kenny 19 and Karen 18:'Clara expectations with their children. is the Family Specialist at the New York State iors: Technical Assistance Project, and has been We had to teach Kenny how to substitute active with the New York Parent Network We have learned that we have to con- communication for challenging and the National Family Association for behaviors, and we had to learn how to sider each member as a very unique Deaf-Blind. listen to and honor Kenny's individual. We believe that we succeeded communication. We learned that when in arresting Kenny's challenging behav- Kenny was happy and relaxed it was iors, and the prize of our success has to easier for us to teach him and for him to be shared with the professionals that supported our efforts. learn. So we created pleasant situations 260 BEST COPY AVAILABLE PAGE 26 TASK Newsletter, November 1999 THE ETHICS OF BEHAVIOR CHANGE

It May Be Non-Aversive, we should be seeking ways to understand interaction in the name of "treatment or But Is It Non - Coercive ?: them and communicate to them that we programming" is accomplished in a The Ethics of Behavior are trying to help them act on their manner that supports that person to be Change wishes, needs and desires. spirited, self-directed and fulfilled. Continued from page 22 When people feel valued and included Nancy Weiss is the Executive Director of they are much more likely to behave in TASH. ways that do not challenge systems or the Laura to achieve these behavioral goals. people around them. It is not enough to 'Skinner, B.F. (1971). Beyond freedom The ethical questions are clear. Simply design behavior programs that are non- and dignity. New York: Alfred A. Knopf, because the technology exists to train aversive defining an approach by what Inc. p. 150. Laura to be compliant in an inappropri- it is not does little to describe what it is. "Lovett, H. (1996). Learning to Listen: Positive approaches and people with ate environment doesn't make it ethicallyAs family members, advocates, teachers and others who work in the disability difficult behavior. Baltimore: Paul H. acceptable. An astute teacher or behav- Brookes Pub. Co., p. 6. ior specialist would recognize Laura's field, we have a responsibility to people behavior as one of the most objective with disabilities to ensure that any critiques of service quality that they are ever likely to receive. Attempting to change behavior to adapt to an inappropriate environment or inappropriate demands is ethically suspect.

What if we eliminated the term We're looking foryou! "noncompliant" from our vocabulary? The word "noncompliant" doesn't appear TASH is working to identify a list of people who have been members in the dictionary because it is not a term since the organization's inception in 1975. If you are one of these loyal used outside the disability/health care members, please contact Nancy Weiss by phone (410-828-8274, ext. 101), e-mail , fax (410-828-6706) or mail (see back cover for TASH's address). field. We stand up for ourselves. We are assertive and enterprising. Our children are spunky, and strong-minded. We do not buy self-help books to learn to be more compliant or encourage our Looking for Information on children to master the skills of compliance. Only the people with disabilities Self Determination? with whom we work are labeled Participant- Driven Supports? "noncompliant" when they attempt to This new curriculum is the forge their own directions. When people resource you need. h (:huire do not act in a cooperative way our first By John Agosta, Kern i Melds & A Ian nal For Suir-A(hricales question should be whether we are Cathy Terrill asking them to do something that is Includes easy-to-read and What You thorough descriptions of Need to Know meaningful to them. Many of us avoid About Participant- service systemshow they Driven Supports doing things that we do not find person- work and how they're funded. ally fulfilling (think back to the last Self-determination and Herren participant-driven supports are Services meeting you missed) -- we would fluResearch explained, as are strategies to Instaule rightfully resent a coercive attempt to analyze state systems & create force us to take part in meaningless change. activity. The best way to teach coopera- This is a great resource for self-advocates, family members, tion is to model it rather than to apply board members, direct support staff and other too! coercive interventions. List Price Curriculum & Overhead Masters - $179 Curriculum only - $120 Whether efforts at behavior change are Overhead Masters only - $60 positive or not depend almost as much Use Your Credit Card to Order Today! on the spirit in which they are offered as Call: 617-876-0426 on the methods themselves. Rather than Fax: 617-492-7401 seeking ways to control people further Visit our website at http://www.hsri.org/leaders/leaders.html

PAGE 27 TASH Newsletter, November 1999 AVERSIVE PRACTICES ARE NOT POSITIVE BEHAVIOR TECHNIQUES

atRestraints Teach BY PAT AMOS

Nationwide attention is finally people with disabilities: they are used Of course, the ultimate way of keeping being paid to restraint-related repeatedly as standard procedure, and such behaviors under control has been injuries and deaths among the people on whom they are used have discovered by many staffers who have people with disabilities.Predictably, no right or power to end these abusive restrained clients until all behaviors however, efforts at comprehensive reformrelationships. ceased, permanently. Having success- are devolving into discussions about fully completed their behavior plans, ways to increase the safety of restraints Some behavior trainers insist that these clients were released from their via more regulations, trainings, docu- restraints have therapeutic value. This programs despite their inability to mentation, and review committees. In value is calculated on the dubious appreciate such an enduring outcome. the escalating quest for behavior control, assumption that people cannot partici- an army of technicians is always ready to pate in school or community unless theirFinding reasons and means for conform- answer "How?" Somewhere behind bodies are in a certain position. By ing your body to a piece of furniture, like them, there will usually be an over- forcing a person's body to do something finding solutions to the problem that is worked clean-up crew asking "Why?" it would not otherwise be doing, practi- causing you to hit your head, is a process tioners of restraint apparently hope that that requires time, options, and indi- Why are restraints, from basket holds to the person will learn to conform to the vidual choices. It also requires supports "take downs" on the floor, used on desired activity in the future. Even were and accommodations, meaning that children and adults with disabilities in it possible to believe that some sort of aspects of the environment, not just of the first place? A common reply is that the person, must be adjusted.Restrain- people need to be restrained if they pose ing a person to achieve a nicely-posed a danger to themselves or others. Now if "look" of the activity the teacher or staff I am out walking with friends, and I step Restraining a person to achieve a person desires makes about as much into the street without looking just as a nicely-posed "look- of the sense as trying to train the next Sammy car comes speeding past, I hope that activity the teacher or staff Sosa by duct-taping him to a bat. Most someone will grab me and pull me out of person desires makes about as coaches prefer to see a trainee work out harm's way. Next time we come to a his own unique way of connecting much sense as trying to train the busy street, my friends might want to muscles, nerves, and reflexes with the keep a closer eye on me, or remind me to next Sammy Sosa by duct-taping challenges of bat and ball, and even look both ways. They might even take him to a bat. believe that love and understanding of me for more walks in the park or the the game are vital to success. open countryside. But I would be very chagrined if my friends decided that my If restraints are unlikely to teach better "crossing the street behavior" was "likely gross and heavy-handed "patterning" isways to problem-solve with our bodies, to escalate into a dangerous situation" taking place, however, the enforced could they perhaps teach something and wrestled me to the ground every activity seldom relates to the avowed useful about social expectations and how time I headed toward a curb. A line goal. Children who get out of their chairto relate to others? Some behaviorists would be crossed when an emergency have been restrained in the chair, argue for restraints as an impressive response (while my friends figured out grabbed in a basket hold, flattened on means of extinguishing anti-social and what to do) became a standard proce- the floor, or dragged to a locked room. promoting pro-social behavior. While dure (what my friends habitually would A person who hits his head may undergo their plans pay homage to the role of the do). Of course, at this point I might the same treatment. What is there about environment in producing behavior, conclude that it was time to find some being held in a chair, grabbed in a basket these same behaviorists seem blissfully new friends. hold, flattened on the floor, or forced oblivious to the crucial piece of the into a locked room, which can teach environment that includes themselves. Many people with disabilities need, but such diverse lessons as how to sit in a They take pride in "carrying out the cannot find, new friends who will stop chair, when not to get out of a chair, not intervention" with no show of emotion assaulting them. These two realities to slap one's head, and what to do when or involvement, believing their role is define the special danger and injustice frustration or headache prompts you to neutral and their activity means only inherent in the use of restraints on slap? what the behavior plan says it means. 26 2 Continued on page 29 PAGE 28 TASHNewsletter, November 1999 AVERSIVE PRACTICES ARE NOT POSITIVE BEHAVIOR TECHNIQUES

What Retraints Teach others interferes with emotional growth. label, did not make his expectations any Conanucci from page 28 Being taught to accept restraint and give less urgent. up rights over one's body makes many people with disabilities into ideal targets Much later, this same child would pass of sexual abuse victims who are through several difficult years during Staffers come to believe they can tackle a unlikely to attempt to communicate the which his behavior slipped out of his noncompliant client to the floor, and the abuse, since they have also learned that control in frightening ways. Some client will feel nothing but a sharp desire those who care about them cannot professionals advised that he be removed for self-improvement. protect them.Post-traumatic stress from home and forcible means applied, if disorder (PTSD) frequently develops in necessary, to stop these episodes. "When I use a word," says a proto- situations of ongoing danger and fear, Confinement in the local psychiatric Skinnerian Humpty Dumpty in Lewis when the usual options of "fight or facility, it was suggested, would "teach Carroll's Through the Looking Glass, "it flight" are cut off.Those who do him something" about the need for self- means just what I choose it to mean attempt to fight against restraint increase control. Though tempted, his family neither more nor less....The question is their risk of injury or death. Others, refused this assistance on the grounds which is to be master, that's all." Those having observed that the world is ruled that, in resorting to force, their relation- who choose restraints as teaching tools by brute force, will wait until they grow ship with this teenager could indeed be likewise assume they can master the larger or those in control drop their "broken". When he would rage and test meaning their tools construct, as if they guard before demonstrating what they their commitment, they assured him that were writing commands to feed into a have been taught. Many victims of he was safe and secure. Slowly their son computer. But the human brain is not restraint conclude that they must deservestopped panicking and, as his confidence like a computer. Human meaning pain and humiliation, and descend into returned, he was able to help his family cannot be pre-packaged or contained; it despair. help him. The storm passed, and cascades out of any human contact, nothing that mattered was broken. Five creating impacts far downstream. The When we resort to restraints, we damage years later, full of pride and curiosity, actions of a person with power forcibly deep roots of human relationship which that young man went off to college. He restraining a person without, and the have been growing from the start of is currently majoring in Communication. responses of bystanders and the larger every person's life.I once knew a four- community, create meaning in emphatic year old child whose speech, although Restraint, which shuts down communi- and memorable ways. After many mostly echolalic, was punctuated by cation, can only teach negatives.It is a conversations with people who have several pairs of opposites which he used "quick and easy fix" in the same sense as been subjected to restraints, and with with great emphasis. His favorite pair dumping your leftover pesticides in the their families, I can offer the following was "broken" and "not broken." While creek: the clean-up crew downstream list of lessons that restraints teach: he had ample opportunity to pronounce will have to cope with the ruined ecology toys with dead batteries "broken", I for years to come.Only through 1. The world is a very dangerous place. became fascinated with the other ways honoring the complexities of communi- I could be killed at any moment. he applied this term. A locked door to a cation and relationships do we have any room to which he had always been chance of moving beyond the mechanics 2. My parents, and those others who allowed access, a parent who loses track of regulations and safety committees to claim responsibility for me, cannot be of time and starts dinner late, or a the creation of organic, flexible, evolving trusted to protect me. canceled visit from his Grandma, all adaptations to life's challenges. were "broken." It slowly occurred to me 3. My body is not my own. I have no that what he became most indignant right to personal space. about was the breakage of relationships and his expectations of them. He was, in 4. Might makes right. fact, putting forth a deeply moral point of view which said that decisions Pat Amos is with the Autism 5. 1 am a bad person. affecting his participation and power in the world should not be arbitrary National Committee. These lessons have two things in which is to say, made or unmade without common: they are about the disruption, him. He had certain relationships of even the futility, of human relationship, trust, access, and reciprocity which were and their consequences flow far into the of central importance to him, and these future. Generalized fear inhibits the were not to be violated. His young age, ability to explore and learn.Distrust of and the fact that he carried a disability

PAGI203 TASK Newsletter, November 1999 ORGANIZATIONAL POLICIES ON THE USE OF RESTRAINTS

Autism National Committee Policy on Restraints

In the wake of the Hartford Courant's It is clear that: individuals' sometimes desperate groundbreaking series last year entitled efforts to communicate are ignored when staff Deadly Restraint, states across the country are force compliance for oftentimes trivial reasons; designing legislation and regulations to prevent the cumulative effects of repeated restraint can the inappropriate use of restraint. Our friends at lead to diminished self-image and negative the Autism National Committee have adopted the attitudes; when restraint is used, struggle is most strongly worded statement I've seen: provoked and this natural response increases the danger of physical injury. The Autism National Committee condemns the widespread and excessive use of restraints in Although any one of us, disabled or not, may at restricting the civil and human rights of people some point in our lives need to be restrained on with disabilities, and affirms that the use of re- an emergency basis, that should only occur straints should be considered a failure of treat- when there is a substantial threat of injury to ment. self and others. Behavioral restraints are neither treatment nor education. They are merely People who have survived forceful restraint have procedures or methods that restrict freedom of reported they feared they would die in restraint, choice and adversely affect the human develop- and some have died. A number of tragic cases of ment of people with disabilities, and as such we restraint-related deaths of children and adults totally condemn their use. have recently made the national news. Estimates of deaths occurring during or shortly after re- We call on national and state agencies to investi- straint currently range from 50 to 150 annually. gate the widespread mistreatment of people with The actual magnitude of such deaths is poorly disabilities through the use of restraints. We call tracked and subject to under reporting. A federal on Congress and state legislatures to pass legis- Department of Health and Human Services lation to protect people with disabilities by: spokesperson has agreed that these deaths are limiting the use of restraints on children and under reported. adults with disabilities to one-time emergency situations involving serious threat of injury to Many have reported that they now live with fear the person with disabilities or to others; requir- and flashbacks that involve a sudden, involuntary ing immediate reporting of these incidents; re-living of this emotional and physically trau- requiring thorough investigations of the circum- matic experience. Post-traumatic stress disorder stances that lead to the incident; and requiring is increasingly being diagnosed among persons the development of supports and accommoda- who have been subjected to the systematic use of tions to prevent future incidents. restraints. In our experiences as professionals, parents, and individuals with autism, we have adopted 9/3/99 witnessed too many times the horror and injury done to our citizens with autism. We are weary of seeing our people become victims.

PAGE 30 TAO/ Newsletter, November 1999 ORGANIZATIONAL POLICIES ON THE USE OF RESTRAINTS

TASH has modified our resolution on Positive (1) dehumanization through the use of community settings, in order to maxi- Behavioral Supports to clarify our position. procedures that are normally unaccept- mize the individual's personal well being. We welcome your comments: able in community environments for persons who are not labeled with a disability;(2) obvious signs of physical Originally adopted October 1981 pain experienced by the individual; (3) Revised November 1986 physical injury and potential or actual Revised February 1999 TASH RESOLUTION side effects such as tissue damage, ON POSITIVE physical illness, and/or severe physical or emotional stress; (4) effects which would SUPPORTS require the involvement of medical Positive Behavioral Support: personnel, and/or other health care mattingHopper, authorities; (5) ambivalence and discom- TASH's resources, Continued from page 18 fort by the individual, family, staff, and/ expertise and advocacy are or caregivers regarding the use of dedicated to the development, REFERENCES interventions or their own involvement implementation, evaluation, and dis- Lovett, H. (1996). Learning to listen: in such interventions; (6) signs of semination of positive educational and Positive approaches and people with community or peer repulsion or stress behavioral support practices that are difficult behavior. Baltimore, MD: Paul from witnessing procedures that are appropriate for use in typical community H. Brookes Publishing. widely divergent from their standard of settings and are consistent with the commitment to a high quality of life and acceptable practice; (7) the use of Mount B. (1997). Person centered physical restraint for any purpose other planning: Finding new directions for personal satisfaction with life for than crisis intervention to protect change using personal futures planning: individuals with severe disabilities. individuals from imminent harm; and/or A sourcebook of values, ideals, and (8) the use of sedative drugs ("chemical methods to encourage person-centered WHEREAS, Educational and other development. New York: Graphic abuse") for the sole purpose of behavior habilitative services must employ Futures. management. instructional and support strategies which are consistent with the right of Skrtic, T. M. (1991), The organizational IT IS RESOLVED, That all persons with each individual with severe disabilities to context of special education and-school severe disabilities shall have access to effective support without compromising reform. In E. L. Meyen & T. M. Skrtic approaches that enable them to posi- (Eds.), Special education & student their equally important right to freedom tively affect their lives in ways that are disability: Traditional, emerging, and from harm (including access to strategies meaningful to them. Therefore, educa- alternative perspectives (pp. 729 - 792). that provide for physical safety). tional and other support services applied Denver, CO: Love Publishing. in situations involving problem behavior WHEREAS, Current research and Sage, D. D., eSt Burrello, L. C. (1994). must: (1) be developed in collaboration practice have demonstrated the practical Leadership in educational reform: An with the individual in a respectful and efficacy and benefits of functional administrator's guide to changes in culturally sensitive manner that facili- behavioral assessment and positive special education. Baltimore, MD: Paul tates self-determination; (2) be based on H. Brookes Publishing interventions for helping to resolve the a functional behavioral assessment of the challenges of problem behavior affecting internal and external variables that may The Effective Schools Committee, people with severe disabilities. be affecting the person's behavior; and Centreville Elementary School, Fairfax WHEREAS, Individuals with severe (3) use the findings of the aforemen- County, Virginia. (1994). Learning a disabilities have the right to equal access new dance. In NEA Professional Library tioned analysis to develop constructive to medication, emergency, and safety Publication, Teacher-to-Teacher Series, and comprehensive approaches- includ- procedures available to individuals not School-based change: Successful school ing medical, educational, communica- labeled with a disability, according to reform cultivates a school's capacity to tive, and environmental interventions- to legal, regulatory, personal, family, and shape its own destiny (pp. 9 - 21). West assist the individual to address the Haven, CT: NEA community standards. circumstances that adversely affect his or her behavior. Further, supports should Authors Carole R. Gothelf and Jennifer WHEREAS TASH, calls for the cessation be provided in a manner that maximizes Teich are with the Jewish Guild for the Blind of the use of any educational, psycho- access to, and participation in, the full in New York and Jerry G. Petroff is with logical, or behavioral intervention that range of typical home, school, and Temple University in Philadelphia, exhibits some or all of the following characteristics: BESTCOPYAVA1LABLE fAS 265 PAGE 31 TASH Newsletter, November 1999 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. Liz Healey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Jay Klein members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Vice President Tim Knoster torial judgement in selection of materials. Donna Gilles, Chair of the Executive Committee 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. Jacki Anderson Patrick Schwarz Terms such as "people with mental retardation,children with autism," and "in- Jacqueline Thousand 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

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of answering some of these questions: TABLE OF CONTENTS Like many of you, for years I've heard From the Executive Director Page 3 reference made to the mysterious, great TASH Leader: Lou Brown Page 4 birthing that took place in a hotel room in TASH's Influence Grows Kansas City. But I've always had questions Over the Years Page 6 What It Was All About: ...What led to this meeting? Who was Remembrances of TASH Founding there? Whose idea was it to start a new Member Norris Haring Page 8 organization and why? For all of you The Professionalization of Teaching who have lain awake at night wondering and Learning for Children With about the same things, here's the story, Severe Disabilities: The Creation straight from several of the horse's mouths! of TASH Page 9 From the Executive Director In November, 1974, the Research and The Importance of TASH: BY NANCY WEISS Justin Dart Page 16 Demonstration Program funded by the Divi- Reflections By an Early TASH At the dawn of this new millennium sion of Innovation and Development of the Leader: Marti Snell Page 17 and in honor of TASH's twenty- Bureau on Education of the Handicapped Center on Human Policy: Introduction fifth anniversary year, we thought it (now called the Office of Special Education to Disability Studies Page 19 fitting to visit with some people who were and Rehabilitative Services) held its first an- Call For Presentations Page 23 nual seminar. Ed Sontag was a bureau chief Doug Guess Reflects On How Far central to TASH's history In this issue we TASH Has Come . .. And How Far hear from some of the founders and past presi- for the Bureau on Education of the Handi- There Is to Go Page 28 dents of TASH as they reflect on TASH's roots capped. He came to this first seminar with and future. When I ask people what they most an idea for a new organization germinating. want to know about TASH, they first want to He had already spoken withNorris Haring TASH (formerly The Association for Per- know what the acronym "TASH" stands for about this idea and they both felt that a new sons with Severe Handicaps) is an inter- (if you are still wondering about this yourself, national organization that focused on the national advocacy association of people see the boxed section entitled "What's In A educational and other needs of children with with disabilities, their family members, Name?" at the end of page 7). The second more severe disabilities was needed. Sontag other advocates and people who work thing people are most curious about is TASH's and Haring felt that a new organizationwould in the disability field. TASH actively pro- history Who started TASH? How and why? bethe best way to gain immediate attention motes the full inclusion and participa- When and why did it move from Seattle? A to the needs of these children. tion of persons with disabilities in all few years ago, I wrote the following in hopes Continued on page 7 aspects of life. To receive an information 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]. Whom Do I Contact?? For issues of policy, chapter or MISSION STATEMENT 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, OTI1S11 call: Denise Marshall, Directorof Trainingand 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:knelson @tash.org 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, Acting Director of Governmental Affairs, at (410) 828-TASH, Ext. 104, e- mail:ddotson @tash.org Advocating for opportunities and rights; For information on marketing and promotions, permission and reprints, Eradicating injustices and inequities; 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: [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 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, 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]. PAGE 3 26 9TASH Newsletter, Dec. 1999/Jan. 2000 DECEMBER 1999/JANUARY 2000 TASH LEADER LOU BROWN Setting the Pace

BY DONNA GILLES

This issue of the TASH Newsletter teaching!).I went to a session which I would not be complete without words from consider one of Lou's finest, although I Lou Brown about the history of where TASH don't remember when and where it was. came from, and the future of where TASH is He had the audience in hysterics one going. Lou was not available for us to minute and silent the next. His wit interview for this article, as he is busy entertained us for a few minutes and then preparing testimony in the case ARC with the accuracy of a surgeon with a Connecticut v. State of Connecticut. So, I newly sharpened scalpel, sliced through offer a few words about him from my our dense skulls to the area of the brain perspective. Lou, forgive me!Donna Gilles that held our consciences, forcing us to One of my worst fears about aging as ask ourselves, "What could we have been a professional is that more recent partici- that students who were never viewed as thinking?" I, for one, feel a lot better pants in disability work will not know the having any strengths could learn to sort, now, his medicine having worked. history of the inclusion movement, and make sets, discriminate. For many years, he has been TASH's the people who helped get us where we A short time later, because of Lou Connections Ambassador. When you see are today. One of the people everyone in and his colleagues, blocks and bears him at the annual conference every year, he TASH should know about is Lou Brown. became taboo because of their irrelevance is always pulling someone over to someone Not only was he a founder of TASH and to real life. Of course, what goes around else making sure that important connec- one of its first presidents, he helped recruit comes aroundnow that some general tions are made between people who have many of the current leaders to TASH. education kindergarten classes use blocks common interests or who live in the same Also, as a professor at the University of and bears as instructional materials, five- area. This is one of the most important Wisconsin, Lou has graduated some of the year olds are once again allowed to use things that anyone can do for TASH. Our finest professionals in the field, and no them! I remember the respect with membership thrives on connections. Two college student in the field of supporting which he spoke about the people living years ago, a friend of mine attended her people with disabilities completes his/her in institutional settings. I remember first TASH conference and she said that if studies without hearing his name a few Eugene (does anyone else?). Watching she got nothing else out of the conference, hundred times. the tape about Eugene was what ce- attending would be worth it if she could When I first met him 24 years ago, mented my choice of careers. meet Lou Brown. She said it with the same Lou Brown was not yet a household name, I joined TASH in 1978. The ques- excitement that people had 20 years earlier but he was on the verge of becoming a tion I most often heard was, "Has anyone when they heard him speak or met him for legend. He actually came to the school seen a recent article that does not have the first time. where I was teaching in Maryland. It was a Lou Brown's name on it?" He appeared to I'm sure the people who know him segregated facility for students with be everywhere, and the impact of his well are about to strangle me for attempt- disabilities. PL 94-142 had just been message was powerful, life-changing, and ing to swell his head.I know it sounds passed, and we were the first school in the has transformed systems and helped like he is larger than life (and he is pretty county (maybe even the state) that enrolled shape the world as it is today. Years ago, tall), but he's also a down-to-earth, caring students with severe disabilities. He came to I was fortunate enough to catch a couple man. We're fortunate to have had Lou demonstrate instructional strategies that he, of his early conference presentations Brown to help formulate the inclusion, his colleagues, and his students had found when he was on his "Ready or Not, Here community participation, community to be successful in facilitating acquisi- We Come" roll, talking about community employment agenda that is so much a shi tion of skills by students who participation; and his "Where are Your central part of TASH. Thanks, Lou. traditionally had not been Priorities?" offering, using the example of exposed to educational the "prom and the pimple." Donna Gilles is a member of activities.I remember Then came the evolution of inclu- the Executive Board of TASH. sorting blocks and sion. Early on, I was skeptical about the bears, but remember idea of having students with disabilities more his being educated in general education conviction classrooms (of course, look where I was PAGE 4 2 70TASH Newsletter, Dec. 1999/Jan. 2000 DECEMBER 1999/JANUARY 2000

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PAGE 5 ,7 TASH Newsletter, Dec. 1999/Jan. 2000 DECEMBER 1999/JANUARY 2000

TASH's Influence and Leadership Grows Over the Years

BY DR. BUD FREDERICKS

When TASH (originally the American Association for the of these countries. I had the opportunity to testify in legal cases Education of the Severely/Profoundly Handicapped AAESPH) in Perth, Australia to assist a youth with significant disabilities to was organized in the mid-1970s, I was a researchprofessor at enter a regular educational program.I and my staff spent many Teaching Research.I was developing model programs in early months in Australia assisting the reform efforts in the educa- intervention and elementary school for children with moderate tional system in institutions in Melbourne. and significant disabilities. Although I was not involved with the initial establishment of TASH, I was kept well abreast of the The Work of TASH Has Significantly Impacted the association's work through my colleague, Victor Baldwin, who Lives of People with Disabilities was a member of the first TASH Board of Directors. Institutions have been reduced in size and many have closed. I served on the TASH Board and was the president for three Segregated schools have been closed. Children and youth are now years following the tenure of Wayne Sailor. All total, I was a included in public schools. Supported employment and supported member of the TASH Board for nine years.I am now retired, but living programs are now the programs of choice. All in all, children, am active locally.I still advocate for services for individuals with youth, and adults with disabilities have become an integral part of disabilities. However, I also have become involved in juvenile the American culture. TASH has played an important role in the last justice issues, having orchestrated the writing of the Juvenile quarter of a century in assisting the efforts toward integration and Crime Prevention Plan for Benton County in Oregon. I serve as inclusion of people with disabilities in every aspect of life. the chair of the Juvenile Justice Task Force and have completed To name but a few of the accomplishments in which it can studies on the child abuse system in the county and evaluated take pride, TASH has worked hard and diligently in the areas of the county detention center. I am also a federal monitor for the deinstitutionalization, desegregation, and the design and California Youth Authority. implementation of non-aversive behavior programming. TASH has helped me to focus on advocacy issues and has helped me The Scope of TASH's Influence and Leadership define my own philosophical position regarding inclusion and There were over 2000 children, youth, and adults in the behavior programming. state institution in Oregon in the mid-'70s. Classroom services were segregated, and there were a few segregatedschools in A Unique Organization Oregon. There were only sheltered workshops and I, my wife, TASH has been the leader in the areas ofdeinstitutionaliza- and a few other advocates established a group home for persons tion and positive behavior supports. Other professional organi- with significant disabilities in Oregon. This was the second one zations have followed TASH in these efforts. in the state and ten people lived there. Many states are struggling with state budgets. In such times, TASH became the leader in the United States for advocating there is a tendency to cut funds from social programs and espe- for the deinstitutionalization of large institutions, the disman- daily programs for people with disabilities. We see much evi- tling of segregated schools and in the early stages, the integration dence of this happening in public schools today. Consequently, of children with significant disabilities into public schools and there has been a gradual erosion of the quality of many of the classrooms. The term "inclusion" was not adopted until much programs that were once considered models of excellence. later. TASH became involved in litigation throughout the It is important for TASH to continue to advocate for country to achieve these goals and a select few of us were very excellence and never allow schools, residential programs, and active in testifying in these cases. vocational programs to become mediocre. There is also a need The influence of TASH overseas also became evident. TASH for continued advocacy to increase the number of residential leaders were welcomed in Australia, New Zealand, and European opportunities and community-based vocational programs for countries and were invited to give workshops and lectures in all people with significant disabilities.

BEST COPY AVAILABLE PAGE 6 272 TASH Newsletter, Dec. 1999/Jan. 2000 FROM THE EXECUTIVE DIRECTOR

From the Executive Director Gold, Doug Guess, Wayne Sailor, and from Seattle to Baltimore, the location Continued from page 3 Richard Whelan. selected by the Board as providing the best When Norris Haring returned to access to Washington D.C. while avoiding Ed Sontag raised the issue of a new Seattle, he asked William Dussault to draw the stresses of being "inside the beltway" organization to the seminar participants. up the articles for incorporation as a non- Unfortunately, none of the Seattle-based He proposed that a meeting be held to profit organization in the State of Wash- staff chose to relocate from Seattle to discuss the viabilty of this idea and after ington. The organization was incorpo- Baltimore. All of the staff who now receiving favorable response, scheduled a rated on April 4, 1975. Bill Dussault support TASH started since TASH's move special meeting to be held after the remained TASH's attorney, contributing to Baltimore in March, 1995. Many of the completion of all of the seminar-related services pro bono, until our move East. current staff have been with TASH since presentations. The meeting was attended The first official meeting of the AAESPH just before or shortly after the move'. by fifty-five seminar participants. Sontag took place November 12-14, 1975, again in There have been many changes for the opened the meeting by presenting the Kansas City, Missouri. The newly confirmed organization since its establishment. There purposes that he envisioned would be board members of the AAESPH were intro- have been several name changes, a broad- served by an organization that supported duced by Doug Guess as follows: Norris ening of focus to include very young chil- the delivery of quality services to children Haring, President; Diane Bricker, Vice dren and adults with disabilities, a more glo- with severe or profound disabilities. President; Verna Hart, Secretary; Bob York, bal view of the disability community, enor- After some informal discussion, the Treasurer; and Alice Hayden, Chairperson. mous growth, and a move clear across the group selected Alice Hayden to serve as Additional Board members were: Vic country.But the principles on which the temporary Chairperson. She raised the Baldwin, Lou Brown, Tim Crowner, Marc organization was built and our fundamen- following question: "Should an organiza- Gold, Camille Peck, Wayne Sailor, Ellen tal purpose and vision remain unchanged. tion be formed to promote the profes- Somerton, Jim Tawney, Dick Whelan and The need for an organization like TASH has sional preparation of personnel, to Wes Williams. not diminished since our inception 25 years establish a system of information dissemi- From 1974 to 1975, the organization ago. As we enter the new millennium, our nation, to strengthen advocacy on behalf grew from the original thirty-two members commitment to social justice for all people of students with severe disabilities and to to over 1200. Norris Haring and Ed with disabilities has never been stronger and perform political activities on behalf of Sontag recently wrote the following: our goals have never been more vital. these students?" There was widespread It was our vision in 1974 to create an support for the establishment of such an organization that was unique and would WHAT'S IN A NAME?? organization. A lively discussion ensued make a difference in the lives of children Many people want to know what the that lasted until well after midnight. It with moderate, severe, and profound acronym TASH stands for.Here's a was suggested that a smaller subcommit- disabilities. We succeeded in establishing brief history of the organization's name. tee be formed to continue the discussion, a professional community recognized for When TASH was started in 1974, it refine the organization's goals, suggest a excellence in the education of these was called the American Association for name for the organization and name students. The principles under which the Education of the Severely/Pro- interim board members and officers. this organization was established are as foundly Handicapped and went by the So, that brings us to the smoke-filled viable today as they were then. acronym AAESPH. In 1980 the name room. As Norris Haring told me recently, Liz Lindley was TASH's first Execu- was changed to The Association for the "A lot has changed since that famous tive Director and remained in that role Severely Handicapped, reflecting evening of November 14, 1974. Not only until 1992. In January, 1993, George TASH's broader mission. The name was the room smoke-filled, the favored Flynn became the Executive Director. He was changed to The Association for menu choice was oversized Kansas City served in that position for about a year. Persons with Severe Handicaps in steak, and there were only six public In early 1994 the Board decided that 1983, but the acronym TASH contin- schools in the country that provided ser- it was time to move the central office of ued to be used.In 1995, the Board vice programs for students with severe dis- TASH from Seattle to a location closer to voted to maintain the acronym because abilities." The subcommittee worked into Washington D.C. For a number of years, it was so widely recognized but to stop the early morning hours. On November beginning in the mid-eighties, TASH had a using the full name of the organization 15, 1974, the first official meeting of the second office in Washington, D.C., that because it no longer reflected current newly formed American Association for focused on issues concerning Governmen- values and directions. Perhaps the best the Education of the Severely/Profoundly tal Affairs, ably run by Celane McWhorter, answer to the question, "What does Handicapped (AAESPH) took place. The TASH's Director of Governmental Affairs. TASH stand for?" is... equity,diversity, pro tern officers and board members were This office closed in 1993. The Board saw social justice, and inclusion! introduced: Norris Hating, President, Lou a need to consolidate operations in a Brown, Vice President, Francis Anderson, location that allowed easy access to Many thanks to Norris Haring and Ed Sontag Secretary, and Bob York, Treasurer. Other Washington D.C. I began my tenure as for their assistance in preparing this history. Board members included Diane Bricker, Executive Director in January, 1995. My Marilyn Cohen, Laura Dennison, Marc first task was to move the organization dla PA && TASH Newsletter, Dec. 1999/Jan. 2000 WHAT IT WAS ALL ABOUT

Remembrances of TASH Founding Member NORRIS HARING The First TASH Meeting from segregated facilities to I was the founding president full inclusion in schools and of the American Association for the communities. Education of the Severely/Profoundly From 1975 to the present, Handicapped (AAESPH). A few years later nearly 25 years, TASH has been a prime the name of the organization was changed mover in bringing persons with severe to The Association for the Severely disabilities from segregated facilities to Handicapped (TASH). At the beginning fully inclusive environments throughout of TASH's existence, I was the Director of the nation and in a few countries the Experimental Education Unit at the outside of the U.S. TASH is an organiza- University of Washington in Seattle. tion which is totally dedicated to the At that time, people with severe lives of persons with disabilities disabilities were in residential institutions dedicated to enhancing their develop- and received little, if any, services includ- ment from birth through aging. ing education, therapies or rehabilitation and job training. People with disabilities were completely segregated from society. TASH's Achievements Through The earliest TASH meeting began when the Years a planning meeting was arranged by Ed Sontag and Paul Thomp- TASH should take pride in its achievements, including its son to bring together the directors and other staff involved in the leadership in: first of a series of demonstration projects located.strategically Assuring inclusive education for all students; throughout the country. These projects were designed to show Closing the most punitive of residential institutions and that children with severe disabilities could be educated and providing close monitoring of the institutions that remain; ultimately live and work in their home communities. Increasing the regard, respect and the rights of all persons The meeting was held in Kansas City. After the project with disabilities in society; presenters had completed their sessions, some 36-40 of the Contributing significantly to the legislation that led to IDEA attendees gathered and after several hours of discussion, voted to and the ADA; initiate a non-profit association to benefit all persons with "severe Stimulating the development of university programs for the handicaps." I was charged by the committee to develop the preparation of professionals in the disability field; and association's Articles of Incorporation and the By-Laws. Having no Stimulating research programs and peer reviewed journals experience in the legal aspects of incorporation, I summoned the such as JASH, the TASH Newsletter and JABA. assistance of William Dussault. Dr. Alice Hayden and myself met with Bill and gave him our interpretation of the goals and objec- For me personally, TASH has played a major role in my tives for the AAESPH and he drew up the papers for incorporation career since its founding in 1975. The organization has guided and filed our application with the State of Washington. my goals in the publication of research, teaching and theoretical The following year, 1975, marked the first meeting of TASH formulations. (then AAESPH), held again in Kansas City. The first few TASH is unique because of its unqualified dedication to all meetings were like a large family gathering, totally dedicated to diversity, with particular emphasis on persons with disabilities. advancing education, research, professional preparation, As members, we realize that the respect for the rights of persons dissemination and transdisciplinary services. (See the article by with disabilities is their entitlement. Further, it is our responsi- Ed Sontag and Norris Haring on the history of TASH, originally bility as leaders to promote these entitlements for all persons published in JASH (Spring 1996) and re-printed in this issue of who have been marginalized by society. the Newsletter beginning on page 9). TASH's Leadership in the Field Continues TASH's Work and Influence Are TASH's role as a leader in the disability rights movement Far-Reaching is far from an end. We must follow the same basic philoso- TASH was the single most important national phy and direction that has led to such significant changes association in influencing the provision of services in all aspects of life for persons with disabilities. We of all kinds (pre-school, school-community should strengthen our responsibility by provid- inclusion, vocational training, publications ing leadership to other organizations that and research). TASH's activism helped have now assumed various roles in improv- to generate a quantum leap of changes ing the lives of people with disabilities.

PAGE 8 27 4TASH Newsletter, Dec. 1999/Jan. 2000 THE CREATION OF TASH The Professionalization of Teaching and Learning for Children With Severe Disabilities: The Creation of TASH

BY: ED SONTAG, UNIVERSITY OF WISCONSIN-STEVENS POINT NORRIS G. HARING, UNIVERSITY OF WASHINGTON-SEATTLE

The following article appeared originally V considered noneducable, was the in the Spring 1996 issue of JASH. beginning of a major shift toward The authors of this article often have including children. Acknowledging the reflected on the significant events sur- It was our vision in 1974 to right of all children and youth to educa- rounding the creation of the American create an organization that tional services marked a significant Association for the Education of the was unique and would make a increment on the continuum from Severely and Profoundly Handicapped segregation to full inclusion. (AAESPH), now known as The Association difference in the lives of In the Goldberg and Cruickshank for Persons with Severe Handicaps children with moderate, (1958) debate, Goldberg argued that the (TASH). The history of TASH is about the trainable child is the responsibility of the severe, and profound history of the professionalization of the public schools. Even so, he imposed teaching of children with severe disabili- disabilities. We succeeded criteria stipulating that the child (a) be of ties. (Note: To the extent possible, "people in establishing a professional school age, (b) be developing at a rate of first" language is used throughout this community recognized one-third to one-half that of the child article. However, at times, the recounting without disabilities, (c) have potential for of historical events utilizing historical for excellence in the education self-care tasks and self-protection, (d) have citations resulted in retaining the original of these students. The potential for social adjustment in the language of the period.) home and community, and (e) have principles under which Such a history seemed especially timely potential for economic usefulness. considering the 20th anniversary of the first this organization was Meeting these pertormance requirements, meeting of the AAESPH, which coincides established are as viable then, the child had the right to be trained with the 20th anniversary of the passage of today as they were then. to the maximum of his or her ability. the Education for All Handicapped Children Further, according to Goldberg, the public Act (PL. 94142). Although we have at- schools had responsibility to design tempted to recall the events with a comfort- A programs and provide appropriate able degree of accuracy, we do not claim that educational services. ours is the only legitimate voice for writing Cruickshank, on the other hand, argued this history. We simply decided it was our public education for all children with that these children are not educable and, time to do it. disabilities as (a) a federal official therefore, should not be the responsibility The article is organized chronologi- assigned to develop this new subspecialty of the public schools. Further, Cruickshank cally according to the events that are (Ed Sontag) and (b) the first President of cited Dewey's definition of education to salient in our minds as both the source of this new association (Norris Haring). strengthen his position against public edu- and influence on our participation and cation for these children.This definition involvement in the transformation of Historical Context requires that the student be able to general- public education for children with severe Preceding PARC ize, solve problems, make judgments, con- disabilities. First, we acknowledge the We begin with a review of the ceptualize in abstract form, and utilize lan- significant events that established the conditions and events surrounding the guage concepts. Cruickshank argued that historical context for the emergence of a 1958 debate between Ignacy Goldberg children with moderate retardation lack subspecialty in special education for and William Cruickshank concerning the these abilities. Further, he argued that edu- children with severe disabilities. Second, responsibility of the schools for providing cation essentially is for those who can re- we situate the creation of AAESPH within services to "the trainable" (Goldberg & turn something tangible to society and as- the political context of the Pennsylvania Cruickshank, 1958). This debate marked sume a self-directed role in society. These Association of Retarded Children (PARC) an important trend in American educa- goals were, accordingly, unattainable by consent decree and Mills v. Board of tion toward the public schools' accep- those with severe or moderate retardation. Education litigation. Finally, we expand tance of the responsibility for children Cruickshank recommended as better this history of factual events with our with moderate retardation (1Q 35-50). alternatives that (a) these children be own narrative stories based on our Recognizing the potential of these placed in residential institutions, (b) new involvement in the movement to provide children, who until this time were Continued on page 10 PAGE 9 275TASH Newsletter, Dec. 1999/Jan. 2000 THE CREATION OF TASH

The Creation of TASH V ture demonstrating the successful applica- Continued from page 9 tion of behavior analysis in instructional and clinical settings involving children with se- types of residential schools be established, The PARC and the vere behavior disabilities (Kazdin, 1978). (c) those institutions already in existence Mills litigation established These studies led some educators and ad- be improved, and (d) community daycare vocates to believe that the learning poten- centers be provided. These centers could the precedent for the tial of children with severe and profound provide the services needed and establish necessity for public schools disabilities was much greater than that even the association with the ultimate residen- demonstrated to date. Simultaneously with tial placements. It is illogical, Cruickshank across the nation to provide the emergence of an effective pedagogy for concluded, to place the responsibility on educational services for teaching these children, parents and advo- the public schools to serve children who cates turned to the legal system to secure ultimately will not live in the community children with severe and the right to an education for children with The tide toward educating children with profound disabilities. severe disabilities. moderate disabilities had already begun. In 1956, about 7,000 children who were la- Impact of PARC beled trainable were receiving services in the A The most significant court case that public schools. By fall of 1956, 29 states provided the precedent for educating had passed legislation either mandating or children with severe disabilities in the providing reimbursement for the public most profound disabilities could learn. public school and solidified the need for schools to serve these children (Goldberg & Many of the centers conducted research public policy leadership was Pennsylvania Cruickshank, 1958). demonstrating the successful application Association for Retarded Citizens (PARC). Two years after the "great debate," John to persons with mental retardation of In 1971, PARC brought suit against the F Kennedy was elected President of the behavior principles (Haring, McCormick, State of Pennsylvania, alleging essentially United States.Influenced by a sister with & Haring, 1994). that the state was denying the right of mental retardation, he played a major role education to persons with mental retarda- in advancing the cause of providing public The Contribution of Applied tion. Pennsylvania lost the suit in federal school services for children with disabili- Behavior Analysis court, and the resulting consent decree ties.In 1961, he commissioned a presi- It is instructive to acknowledge the role was that the state must provide a free dential panel on mental retardation, which of applied behavior analysis as a theoreti- appropriate public school education for all made far-reaching recommendations re- cal and applied influence that converged children with mental retardation.' garding prevention, deinstitutionalization, with the emerging recognition that students The PARC consent decree brought the rights, dignity, and care of individuals with with moderate, severe, and profound dis- issue of the education of children with mental retardation.He elevated federal abilities could be educated. Applied be- severe disabilities to the front door of the programs for special education from a di- havior analysis (ABA) provided the power federal government. The Bureau of vision to a bureau the Bureau for Edu- of systematic instruction and the instruc- Education of the Handicapped (BEH) cation of the Handicapped (BEH) with three tional methodology that supported the followed the developments of this major divisions: the Division for Assistance learning needs of this population. landmark case. The Pennsylvania to States, the Division for Professional Historically, the first application of Association of Retarded Children consent Preparation, and the Division for Innova- behavior analysis was conducted by Fuller decree had brought a whole new population and Development. in 1948. Fuller (1949) investigated the tion to the Pennsylvania Public Schools. In 1962, Congress passed legislation learning potential of an 18-year-old The BEH was concerned that if what establishing 24 research centers through- individual who was labeled profoundly happened in Pennsylvania was a forerun- out the nation, centers that would retarded. He was described at the time as ner, of what was going to happen in the investigate causes of mental retardation a "vegetative idiot." Through the system- rest of the nation, the field of special and interventions for children with this atic application of contingent reinforce- education, the states, and the schools were disability. To apply the findings of the ment of arm movements, Fuller was able largely unprepared. For the most part, research centers, funding was granted to a to increase their rate. Arm movements children with severe disabilities were not large number of university-affiliated increased when reinforcement was served in public schools; many were facilities that were to provide (a) manage- delivered contingently and decreased served by local private agencies or resided ment and educational demonstrations of when reinforcement was terminated. By in institutions, and many were not served appropriate interventions and (b) ad- the mid to late 1950s, demonstrations of at all because of waiting lists. In a 1975 vanced settings for interdisciplinary the practical application of behavior speech at the first meeting of the Ameri- professional preparation. Much of the analysis were conducted with several can Association for the Education of the applied research and development clinical populations. Severely/Profoundly Handicapped, Ed identified intervention strategies providing By 1974, there were approximately 200 Sontag recalled that "the field was studies that had been reported in the litera- hard evidence that even children with the Continued on page 11 PAGE 10 2 76 TASH Newsletter, Dec. 1999/Jan.2000 THE CREATION OF TASH

The Creation of TASH Although 25 years later, many of us Whelan convened a meeting of the Continued from page 10 find such a concept offensive to our federal policymakers (Sontag, Jack Jones, present values and understandings, the Robert Dantona, Josephine Taylor, Paul generally caught unprepared for the context of the time helps explain the Thompson, Philip Burke, Herman demands that were placed upon it to recommendation. In 1972, few public Saettler) and leading university scholars facilitate education of the severely school systems had services for children and trainers (Sam Ashcroft, Bill Bricker, handicapped child previously excluded with moderate, severe, or profound Lou Brown, and Verna Hart) to discuss from public education" (Sontag, 1976). mental retardation, and many of these the training needs of personnel to serve In late fall of 1972, Edwin Martin, children were still served by private this new population of students. Director of the Bureau of Education of facilities or remained in institutions. At Several major points emerged. First, the Handicapped, convened a meeting to the same time, our nation's schools were the group recognized that the field was discuss the implications of the PARC emerging from a value system in which unprepared for the entry of children with consent decree. In attendance were teachers with a master's degree were severe disabilities into the public schools Edwin Martin, Robert Herman, Bruce primarily employed at the high school and that what the field construed to be Balow, Philip Burke, Jack Jones, Max level and teachers with a bachelor's children with severe disabilities was quite Mueller, Paul Thompson, Ed Sontag, and degree at the elementary level. In different from the population coming into Herb Goldstein. With the exception of addition, many in the field of speCial the schools. For example, in a 1971 Goldstein, all represented the leadership education generally believed that children grant announcement, the BEH defined of BEH, whom Martin had brought with severe disabilities were not capable the "most severely handicapped children together to focus on the Pennsylvania of learning much beyond rudimentary as ...the trainable retarded" (BEH, situation. Goldstein, the court-appointed self-help skills. Therefore, it was not 1971, p. 2). Second, the group discussed master in the PARC case, was present to unusual that policymakers would at length and agreed that the Bureau outline what the implications of the case seriously consider that paraprofessionals needed to develop a two-prong strategy were for the field of special education and should teach this group of children. for this situation: (a) an immediate what BEH could or should do to help After a series of meetings, however, strategy of funding inservice programs Pennsylvania deal with the situation. The the federal leadership within the Division and (b) a long-term strategy of creating meeting focused on two main topics: (a) of Training Programs, BEH, which new doctoral training programs. The the increased cost of services for children included the newly appointed director, doctoral training recommendation grew with severe disabilities to the state and Richard Whelan, Philip Burke, and Ed out of the sense that the current special (b) the need for personnel to teach this Sontag, began to advocate for compara- education training programs were not population coming into the Pennsylvania bility in teacher standards, that is, for sufficient to train the new breed of public schools for the first time. The professional educators. After several personnel needed. Brown suggested we group presented various plans to deal months of internal debate at the federal needed to put the field on notice that with the financial issues. In addition, level, Edwin Martin, the director of BEH, "business as usual" would not be the special attention was given to the needs sanctioned the professionalization of appropriate answer. This meeting served of the Philadelphia schools and a visit teachers of children with severe disabili- both to galvanize the Bureau's actions and was arranged to the Pennsylvania ties and urged Sontag to continue to to create positive momentum. Department of Education and the monitor the Pennsylvania situation and to From this meeting, the Division of Philadelphia Public Schools. begin developing a professional constitu- Training Programs shifted into providing The participants focused a great deal ency to advocate for the education of additional fiscal resources for the newly of energy on the state's personnel needs. these children. This advice, so typical of created target "the severely and They agreed on the need to begin training Martin, ultimately led to Sontag's focus profoundly handicapped." In addition, new personnel to work with this popula- on this population as his major interest other divisions in the BEH that had tion of children. Sontag's role in the for the next 3 years in BEH. In keeping discretionary resources began to focus Division of Training at BEH was to with the focus, he made several trips to their priorities on this area. The Division develop training for state education Pennsylvania, including many visits to of Research also adopted priorities for agencies and for the education of the Pennsylvania Department of Educa- this population, stating in an informal children with severe disabilities. One of tion and the Philadelphia Public Schools. document distributed to the field that the recommendations that emerged from The critical fallout of PARC, as their main priority was "to encourage the discussion was to begin training a conceptualized by Sontag, was two additional educational programming to new cadre of personnel who would, primary issues: (a) the lack of a perform- severely handicapped children to enable essentially, be paraprofessionals. That is, ing community (i.e., scholars and them to become as independent as the initial reaction to the need for practitioners) and (b) a sense that possible, thereby reducing their require- personnel was to create a teacher for children with severe disabilities could ments for institutional care and providing children with severe disabilities who learn much more than the field thought opportunities for self development." The would not need a baccalaureate degree possible at the time. These two issues Division of Assistance to States established and traditional certification. became inseparable. In December 1972 27 7 Continued on page 12 PAGE 11 TASH Newsletter,Dec. 1999/Jan. 2000 THE CREATION OF TASH

The Creation of TASH tional content (scope and sequence), population or remained ambivalent about Continued from page 11 and instructional materials; whether or not the children could benefit 4.To develop parent training programs from educational service. Haring agreed a demonstration program for children with enabling parents, in collaboration with that the timing for a national organization severe disabilities. Under the leadership of teachers, to prepare their children with to provide education, research, and Paul Thompson, the first wave of new severe handicaps for school and work; methodologies was ideal. Because of his demonstration programs was funded in 5. To develop relevant vocational skill academic credentials and recognition 1973. The Bureau took action under training programs; within the field of special education, Edwin Martin's leadership, who prodded 6. To develop life-encompassing service Haring was asked to provide the high those in the federal service and fostered plans, so that after 15 or 18 years in profile leadership the movement needed. the development of the field of "the a public school program, students Haring, as the Director of the Experimen- severely handicapped." His enlightened could avoid spending the remainder tal Education Unit, University of Wash- leadership was significant and, in many of their lives in residential institu- ington from 1965, had 12 students with ways, was responsible for the establish- tions (pp. 25-26) severe disabilities enrolled in a demon- ment of AAESPH. stration program. It was clear, as Haring Clearly, the issue of providing In addition, the notion of inclusion recalls, that his experience with educational services for children with into neighborhood schools was invoked deinstitutionalization in the state of severe and profound disabilities was by following "dispersal approaches" for Washington during the 1960s had becoming a focal point of the BEH serving children with severe disabilities: illuminated the disadvantages of the agenda. The field responded to the extreme disorganization that can occur priorities, so that by 1974 a performing 1. The programs for students with without a systematic program supporting community had begun to be identified severe handicaps would be repre- new efforts such as this one. and the first wave of doctoral students sented in nearly every school, Sontag and Haring concluded that a specializing in this area had begun their making contact with regular educa- new special organization would be a studies. School districts and universities tional programs, personnel, and practical way to gain immediate attention began to see this population as part of students the norm. Integration of to the needs of these students. Sontag their responsibilities. persons with severe handicaps into pointed out that many project directors of The PARC and the Mills litigation the community and acceptance of the BEH-funded research and demonstra- established the precedent for the neces- these students would be enhanced tion programs for children with severe and sity for public schools across the nation by this widespread mutual contact of profound disabilities would be meeting in to provide educational services for regular education and special Kansas City in November 1974, and that children with severe and profound education students. this group would provide an excellent disabilities. There were no examples of 2. Despite grouping by functional level, audience for considering the proposal to "good programs" providing comprehen- which must be utilized in the school start a new organization. This meeting sive services for students who were system, most children would be placed would bring together many professionals violently aggressive, self-abusive, medi- in schools near their homes. School throughout the country most knowledge- cally fragile, or without bowel and placement in close proximity to a able about the learning potential of bladder control (Sontag, Burke, & York, student's home may yield the advan- students with severe disabilities. 1973). Many state directors and local tages of convenience, fewer transpor- The meeting convened at the directors of special education began tation problems, superior community University of Kansas Medical Center on searching for ways to avoid serving these acceptance and adjustment, and so November 14, 1974. Sontag opened the children; however, educators began forth. (Sontag et al., 1973, p. 20) meeting by thanking the nearly 60 exploring options for serving all children. individuals who attended for giving their Sontag et al. (1973) published the first Sontag, who became a Branch Chief time. Then, he suggested that the group article that provided a helpful conceptualiza- in the Division of Personnel Preparation consider establishing its own professional tion to meet the challenge. In this article, at BEH, decided that an organization for organization, and further, that this six major goals were delineated: persons with severe disabilities was political action be taken at the end of the needed critically. In the spring of 1974, Bureau's meeting so as not to invoke 1. To develop relevant and efficient in Albuquerque, New Mexico, Sontag criticism for using government resources preservice and inservice teacher discussed with Haring the notion of to establish an organization. training programs; establishing an organization to support 2. To develop highly specialized the delivery of quality services to children TASH Was Formed in a doctoral-level personnel with with moderate, severe, and profound Smoke-Filled Room expertise in teacher training, disabilities. Sontag argued that the major On the evening of November 14, research, and instructional design; organizations in the field of special 1974, approximately 30 participants of 3.To develop and disseminate a more ef- education and mental retardation at the the First Annual Seminar of Research and ficient instructional technology, instruc- time were either not interested in this Continued on page 13 PAGE 12 278 TASH Newsletter, Dec. 1999/Jan. 2000 THE CREATION OF TASH

The Creation of TASH throughout the country be provided. Kansas City, Missouri. The board Continued from page 12 A motion was made to form a members of the newly incorporated subcommittee responsible for refining the AAESPH were confirmed and introduced Demonstration Programs for Severely/ goals of the organization, naming the by Doug Guess as follows: Vic Baldwin, Profoundly Handicapped Children and organization, and nominating officers and Diane Bricker, Lou Brown, Tim Crowner, Youth attended an evening meeting that an executive board pro tempore. By early Marc Gold, Norris Haring, Verna Hart, continued until after midnight. After an morning November 15, 1974, the Alice Hayden, Camille Peck, Wayne informal discussion, the group suggested subcommittee's proposal to organize a Sailor, Ellen Somerton, Jim Tawney, Dick that Alice Hayden, Associate Director of nonprofit association named the American Whelan, Wes Williams, and Bob York. the Experimental Education Unit, Association for the Education of the The Executive Committee officers elected University of Washington, and Director of Severely/Profoundly Handicapped by the board were Norris Haring, the Model Preschool for Handicapped (AAESPH) was approved by the members President; Diane Bricker, Vice-President; Children, serve as chairperson. Hayden of the larger group that remained. In Verna Hart, Secretary; Bob York, Trea- opened the formal meeting with the issue addition, a slate of temporary officers and surer; and Alice Hayden, Chairperson. of forming an organization that would an executive board were elected on a pro In Haring's welcoming address, he focus on research, service, and the tempore basis. Elected officers were Norris referred to the meeting as the second preparation of personnel for educating Haring, president; Lou Brown, vice- annual conference, however, the organi- "the severely handicapped." The motion president; Frances Anderson, secretary; zation had not been incorporated at the was made and seconded "to form an and Bob York, treasurer. The executive time of the 1974 Kansas City meeting organization for persons with severe board included Diane Bricker, Marilyn (Haring, 1977). In his address, he listed handicaps." The participants recom- Cohen, Laura Dennison, Marc Gold, Doug the goals that were similar to, but mended that the organization assume Guess, Wayne Sailor, and Richard Whelan. somewhat refined, from the 1974 responsibility for the following activities: That afternoon, the small steering commit- meeting. From 1974 to 1975 the tee completed the following statement of association grew from the 32 original 1. Development of a newsletter to the association goals: members to approximately 1,200. facilitate open communication Individuals who joined during that year among members. 1. To function as an advocacy organiza- represented significant diversification, 2. Establishment of a mechanism for tion for the development and such as public school administrators, disseminating research activities. implementation of comprehensive, teachers, professionals from residential 3.Development of opportunities for high-quality educational services at institutions, students, and parents. facilitating professional preparation. birth through adulthood in the The membership grew by word of 4. Provision of opportunities for public sector. mouth and through specific invitations exchanging information about 2.To serve as a separate entity in from the 32 members of the first meeting. effective intervention programs. advocating for: There was a great amount of resistance to 5. Strengthening of political activities a. the development of relevant and the establishment of the organization. on behalf of persons with severe efficient preservice and inservice Members of the group who promoted the handicaps. teacher training programs; organization were ignored, even ridi- b.the development of highly culed, in some cases, by their own The immediate need for starting a specialized doctoral-level, colleagues. During that period, it was new journal was suggested; however, an teacher training, research and common for medical practitioners to urgent need was recognized for members instructional design personnel. advise parents who had infants with to supply articles to journals already 3.To develop, refine, and disseminate Down syndrome and severe disabilities to established. In addition, the group training packages, instructional place their children in residential identified an immediate need to provide programs, and materials. institutions. The concern was that consistent, basic, and high-quality 4.To facilitate parental involvement in maintaining children with moderate and educational programs for students with all program services for the severely severe disabilities in the home was a severe disabilities. The discussion and profoundly handicapped. formidable problem. The National emphasized the goal of providing a way Institute for Education prepared a report to establish and strengthen the functional In the time between Sontag's to present to Daniel Moynihan, for responses of individuals with severe proposal to establish a new organization President Ford, on the school desegrega- disabilities leading toward independence and the first official meeting, Haring tion issue. That report raised real and an increased quality of life. To meet arranged to support some dissemination questions about the value of early this goal, the group recommended that activities that ultimately became the educational intervention, suggesting that (a) systematic instructional procedures activities of the new organization. This school intervention in early childhood and materials be developed and (b) a way led to the ftrst official meeting. has little, if any, long-term effect on of disseminating the materials and The first official meeting of AAESPH achievement. procedures to professional personnel (TASH) was November 12-14, 1975, in Continued on page 14

, a PAGE 13 27 9TASH Newsletter, Dec. 1999/Jan. 2000 THE CREATION OF TASH

The Creation of TASH 4.Providing comprehensive instruction the educational alternatives for children Continued from page 13 and management for these children with handicaps and, in the end, provide and youth necessitates the collabora- for better quality of services to children Pursuing the issue of the value of in- tive efforts of a number of disciplines with severe disabilities. tervention in general, Haring stressed the ...teachers and therapists working Third, there was a dire need to build urgent need for measurable results of gains smoothly together. The thought that new programs for infants and young chil- provided by systematic intervention. Cer- each discipline is more vital than the dren and strengthen those that currently tainly, the procedures for strengthening the other is totally nonfunctional in this existed. It was crucial that we concentrate performance of children with severe dis- endeavor. on very early identification of infants who abilities had been demonstrated. We then were at risk for disabilities, so that timely, had to demonstrate that the goals we had A third major address was delivered systematic intervention could begin. established were functional and that we by Sontag. In his speech, he enumerated Finally, as professional interactions could quantify the gains made as a direct four major developments that emanated over the several disciplines were expanded, result of intervention. from the PARC decree and Mills v. Board there was a need to standardize communi- Haring concluded his remarks at the of Education of the District of Columbia. cation among those involved in compre- 1975 Kansas City meeting by stressing These major developments included a hensive management (Sontag, 1976). that the effectiveness of educational significant attitude change within the programs then implemented for students special education community. Before Epilog with severe disabilities would depend PARC, school officials justified excluding It was our vision in 1974 to create an upon systematic procedures, a curricu- children with severe disabilities from organization that was unique and would lum based on teaching functional skills, services. By 1975, educators were make a difference in the lives of children and the positive attitudes and support of beginning to recognize that: with moderate, severe, and profound the individuals in the lives of these disabilities. We succeeded in establishing students. 1. All children had a right to an education. a professional community recognized for The keynote address was delivered 2. The focus of services for students excellence in the education of these by Ed Martin, Deputy Commissioner of with severe disabilities had been students. The principles under which Education, U.S. Office of Education. In shifting from institutions to special this organization was established are as his address, Martin attributed great programs in local schools in self- viable today as they were then. The significance to the Association because it contained classrooms. outstanding leadership that emerged out was organized to devote specific attention 3. Early childhood programs for of the federal efforts collaborating with to the affirmation of rights of each and preschool children with severe the academic and advocacy communities every individual. Martin outlined four disabilities were being established is a testament to the success of the major considerations that had to be throughout the country. In 1972 movement. This article chronicles the addressed to forge ahead in serving this there had not been one professional period preceding the creation of TASH. seriously underserved population preparation program for teachers of Perhaps others will follow to document (Martin, 1975): students with severe disabilities. the growth, accomplishments, and 4.The Division of Training Programs success of this organization. 1. We must learn more about how to began providing financial support teach the children what sparse through grants to training programs FOOTNOTE: course offerings available for training for fellowships in leadership training Following the PARC suit was the action professionals are offered by teachers programs in severe disabilities. filed in the District of Columbia (Mills v. who are themselves without sufficient Board of Education of the District of Colum- expertise. We must become more Although Sontag readily acknowl- bia, 1972). This decision expanded the functional in the way we prepare teach- edged accomplishments that had been right of an education to all children with ers and instructional support staff. achieved in the four years since the PARC handicaps. In addition, it stated that the 2. Because teaching children with severe decree, he identified four concerns that District of Columbia School Board must disabilities is a demanding task, we needed serious consideration for improve- not take any actions that would exclude must provide teachers with stronger ment. First, he proposed that we concep- children with disabilities from a regular support systems, working directly with tualize a new model "a model that calls public school placement, and, in case them as support in their classrooms. for more integration into the regular pub- such placement was not available, must 3. We must place greater emphasis on lic schools of the severe and profoundly provide students with alternatives at pub- measuring incremental change in be- handicapped child" (Sontag, 1976, p. 2). lic expense. The Mills decision ruled out havior toward the specified instruc- Second, Sontag suggested that any reason, including insufficient re- tional objective; and, further, it is es- special education should strengthen its sources, for not providing public school sential to develop a system of evalua- role in developing parent-professional education for all children and youth with tion to assist teachers in making more partnerships. Parents and professional disabilities. accurate instructional decisions. partnerships could improve significantly Continued on page 31 PAGE 1423 0 TASHNewsletter, Dec. 1999/Jan. 2000 DECEMBER 1999/JANUARY 2000

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PAGE 15 2 81 TASH Newsletter, Dec. 1999/Jan. 2000 THE IMPORTANCE OF TASH

4: 4

---I JUSTIN DART Co-Founder, Justice for All

Although I was not associated and advocacy has produced miracles in with TASH during its early the lives of people thought to be days in the '70s, I have come physically, mentally and economically to know the organization well as a hopeless. TASH has expanded the group of passionate, cutting-edge horizons and quality of human life. advocates for empowerment, rights and TASH should continue its dynamic services for people with significant leadership role. TASH should expand disabilities.I believe so strongly in the its membership ten or a hundred times. work of the organization that I became TASH should get its members into a lifetime member several years ago. politics. Some of our most serious TASH has expanded my conscious- problems will never be solved until we ness to understand human develop- replace certain demagogues with people ment much better. The passionate who believe in the inclusive democracy people of TASH have expanded my of Jefferson, Lincoln, FDR and Martin passion to fight for life. TASH policy Luther King.

.::t.74.

Justin Dart with staff member, Don Dotson (right) and his son, Matthew, at TASH's September, 1998 IDEA Rally in Washington, D.C.

V- 4

PAGE 16 24 TASH Newsletter, Dec. 1999/Jan. 2000 TASH'S ROLE IN THE DISABILITY ADVOCACY FIELD

Reflections By An Early Leader of TASH MARTI SNELL My Involvement with TASH early radicalism seemed not to 0 When TASH was started, I keep up with our members' had just completed one year of radicalism at times. For 0 teaching at the University of example, our policies not to Virginia in the Curry School of advertise any schools/programs Education and a year prior to that at that were segregated was unmatched in Michigan State University. I was relatively the nonprofit world of organizations. young 28 years old. During the Likewise, our practice not to admit summer of 1974 I was involved in post- presenters who espoused views that were doctoral study under Diane and Bill counter to our resolutions (pro-aversives Bricker at the Mailman Center at the or institutions, for example) was strong University of Miami. I saw Diane after she and consistent for years, but challenged had attended an organizational meeting for at times by outsiders crying "freedom of AAESPH (the American Association for the speech" and some members who wanted Education of the Severely/Profoundly less purism. Handicapped, later renamed TASH) and I asked her what the lengthy acronym Committee, 1990 to 1996; Membership The State of Disability Rights in meant on a button she wore. She told me Operating Committee, 1997 to present). the 1970s all about the group, the active role of Alice The earliest TASH board meetings Institutions were still taking people Hayden (senior faculty member and one of were lively and never boring (not that into their folds and only infrequently the main organizers of TASH) along with today's are unlively or boring - I have not releasing them. Virginia was a "leader" in other early founders and members of the been to a board meeting for a while!). this practice. Like many early TASHites, association: Norrie Hating, Wayne Sailor, Our meetings stretched out all day and I had come from a history associated with and Lou Brown. I knew all their names sometimes longer, but we had great institutions. My life before Virginia was but had not met any of them and was debates and interchanges among us. Liz in Michigan and my start in special eager to join as Diane elaborated on the Lindley told me years later that she education was at the Plymouth State goals of the group. stopped serving caffeinated coffee at Home and Training School as a child care board meetings after the first pot was worker. This institution closed in the late Initial Meeting of AAESPH done she thought we got too lively. 1970s while Virginia's institutions added The first meeting I attended was the Carving out the first resolutions was new beds and continued to practice following Fall of 1974 in Kansas City. central in these meetings. Lou Brown's sterilization of people with mental Was it Jimmy Carter, presidential sense of humor and strong convictions on retardation with a law in support of this candidate who walked through at the many key concepts such as functionality, practice on the books until the early time we were meeting? I think so, but age appropriateness and segregation 1980s! The then Lynchburg Training my memory is a bit fuzzy. served as a visible banner we all looked School and Hospital (an hour south of My involvement with TASH did not toward in our early meetings. In later Charlottesville) had a population of occur until several years later when I meetings, Luanna Meyer seemed to 3,000 in 1973, the largest in the country. became a member of the board. My define and hold steadfast to the "purest" Inclusion was not practiced nor even resume includes the following lines about TASH position, often being a leader in known as a term; mainstreaming was my long-term and meaningful involve- establishing standards for the board. only for those with the mildest disabilities ment with TASH: The Association for While our early meetings were and meant earning one's way back into Persons with Severe Handicaps (TASH) highly stimulating and productive, they "regular" education; collaborative (Lifetime Member; Executive Board also were relaxed in procedures, perhaps planning was not a required practice, and Member, 1979 to 1991; Treasurer, 1980- too relaxed, a problem that we eventually none of this applied to students 1981, 1983-1984; Vice Presi- faced as we grew larger. As time pro- known as TMR, low function- dent, 1984 to 1986; President- gressed, many of us learned how to better ing, or severely and profoundly Elect, 1986 to 1987; President, fill board member responsibilities. mentally retarded (as those with 1987 to 1990; Member, severe disabilities were referred Publications Committee, 1990 TASH's Role in the Disability to). People-first language was to present; Advocacy Field Continued on page 18 TASH has always been viewed as Personnel Preparation radical a judgment that made us proud. It was not until later that our

PAGE1728 3 TASH Newsletter, Dec. 1999/Jan. 2000 TASH'S ROLE IN THE DISABILITY ADVOCACY FIELD

wake (though most would never admit competed with it!), many groups often years behind us. my role as mom I think this is more evidence of our of two young Continued from page 17 ability to take the lead. We have been girls. My called many names (e.g., Doug Fuchs youngest daughter, Claire, was unheard of, as was supported referred to us and Dianne Ferguson as the about 4 or 5 years old (she employment, transition plans. radical inclusionists), most of which we attended the Colorado meeting and IEPs. Things were pretty are pleased with. as an infant, a real hit at the primitive both in terms of Currently, my philosophy and my cocktail party). She accompa- practices that promoted advocacy role continue to be consistent nied me to the car as I headed out for normalized lives and attitudes toward with that of TASH, though I play a far another TASH meeting (1 believe the people with disabilities. less active role in the organization. Spring meeting of the board). She looked at me scowling and said, "I hate TASH." TASH's Importance in the How TASH Has Impacted the But today both my kids know to use Disability Field Lives of People with Disabilities people first language and have values on I think TASH has been highly influen- TASH's work and the leadership role disability consistent with TASH values. tial in this country, though in gradual ways of the association has had both direct and I would call TASH an advocacy and in ways that may not link directly back indirect impact on the lives of people organization, not a professional organiza- to us. Our influence has been in the areas with disabilities and their families in tion, though professionals may make up we have most consistently believed in, several key ways including: the majority of the association's member- preached on, practiced, written about, and ship. Advocacy for people with severe researched. These areas are: Reducing the institutionalization of disabilities and change to benefit them people with disabilities and closing and their families is and always has the elimination of segregated public institutions; been our purpose. schools Influencing current legislation such as the closing of institutions; supported employment and transition Future Directions for TASH the banning and replacement of laws and the inclusion of positive be- First is TASH's devotion to improve- aversive interventions with positive havior support in the 1997 IDEA; ment for people with severe disabilities behavior support; Increasing the practice of integrated and its nature of self-examination and the design of instructional programs therapy; challenge.I think we need to continue that are functional and age Influencing instructional practices and/or strengthen: appropriate; for students with severe disabilities the promotion of meaningful (e.g., age appropriate, functional, use 1. The association's influence in participation, even if partial; of ecological inventories, commu- Washington; the promotion of integrated therapy; nity-based instruction, etc.); 2. The productivity of our membership: the use of people-first language; and Increasing inclusive school practices writing through our newsletter and the promotion of inclusive school for students with severe disabilities research in our journal; programs through the efforts of the TASH mem- 3. The association's impact on a state bership and their published research, level through TASH chapters; Today, compared to the 1970s, published texts, court cases, and ex- 4. The writing and publication of TASH educational practices, special education emplary school practices. books and monographs; laws, and philosophies are vastly differ- 5. The organization's impact in impor- ent.I think these changes are a result of The positive outcomes of TASH's tant court cases through organization our influence both on others and on each work and influence are most evident as and strategizing via TASH meetings other. In many cases, in the early years TASH values have impacted upon and and members (e.g., Frank Laski and we pushed each other into new ways of shaped my own professional values. Lou Brown have been central to this thinking about the people we worked These values have in turn influenced my process); with who had severe disabilities, our daily teaching of university students, my 6. TASH's linkage and influence debates refined and strengthened our writing and research, and my role with with other disability organi- 0 thinking and set the beginning local, state, and national organizations. zations; standards for TASH. The negatives were at a peak when I was 7. The association's informative I continue to be surprised near the end of my tenure as president and powerful conferences. by the conservative nature of and the politics of TASH were at a very other disability organizations, high stress point for many of us as many and also by the changes were being made in our organi- way they seem o zation.I remember sometime earlier in to follow in our the mid-1980s when my involvement PAGE 18 2s TASH Newsletter, Dec. 1999/Jan. 2000 C E N HUMAN POLICY RA/10N All Introduction To Disability Studie

BY PERRI HARRIS AND LORI LEWIN

Over the past several decades, what we now refer to The field of Disability Studies continues to grow and as "Disability Studies" has been a powerful influence on change. Recent additions to the field such as feminist policy and practice in regard to people with disabilities. Disability Studies and cultural studies have challenged Disability Studies has evolved as a means of addressing "traditional" Disability Studies, and have forced the field how people with disabilities have been treated histori- to be more inclusive of different perspectives and cally and how they continue to be treated. Once seen positions in society. Moreover, Disability Studies most through a medical model as people who are sick and in often focuses on issues around people with physical, need of a cure, through a sociological model where rather than cognitive disabilities. One major challenge people with disabilities are labeled and stigmatized by for the future of Disability Studies is the inclusion of the others, or through a psychological model where their experiences of people with cognitive disabilities and how experiences have been individualized and pathologized, they shape this emerging field. people with disabilities are now being seen through different perspectives. Although medical and psycho- Reference logical models are still present, they are being resisted by Bogdan, R., & Taylor, S. J. (1994). The social a relatively new field called Disability Studies, premised meaning of mental retardation: Two life stories. New York: upon the philosophy that disability is a social construc- Teachers College Press. tion. While Disability Studies does not deny that there are differences, either physical or mental, between people, they argue that "the nature and significance of these differences depend on how we view and interpret SELECTED ANNOTATIONS OF DISABILITY them" (Bogdan and Taylor, 1994). Therefore, rather than STUDIES TEXTS seeking to "fix" a person or to separate him or her from The following listing is comprised of books that could the rest of society, a Disability Studies perspective would be used as "text books" for a Disability Studies course. seek to "problemitize" society rather than the individual. Most of them are edited books (there are some articles) The solution therefore lies not in the person, but rather that cover a variety of topics such as disability rights, in breaking down the barriers that limit people with identity politics, cultural studies and disability, social disabilities from full participation in their communities perspectives on disability, and perspectives of people with and in society in general. disabilities. It is worthy of note that the majority of this Disability Studies seeks to examine the social, material is written from the perspective of or includes the economic, and political forces that for years have served perspective of only those with physical disabilities. to marginalize and oppress people with disabilities. The Unfortunately, over the past several years, "texts" such as field has emerged over the last several years, drawing on these which include developmental disability and theories and perspectives from sociology, social science, Disability Studies have not been published. women's studies, cultural studies, and education.It often focuses on the idea that people with disabilities are a minority group who have been discriminated against. In this sense, the study of disability is similar to the study of Charlton, J. I. (1998). Nothing about us without us: race, class, and gender inequalities. In addition, Disabil- Disability oppression and empowerment. Berkeley, CA: ity Studies provides the intellectual and methodological University of California Press, 2120 Berkeley Way, tools needed to create disability research and policy. The Berkeley, CA 94720, FAX 510-643-7127, http://www- theories and philosophies of Disability Studies can then ucpress.berkeley.edu/ be applied to real issues in the law, in community inclusion, and in public policy. Continued on page 20

_Kt 1:41-2* PAGE 192 TASH Newsletter, Dec. 1999/Jan. 2000 CENTERAolmeNHUMAN POLICY

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An Introduction to Disability Studies Fries, K. (Ed.). (1997). Staring back: The disability Continued from page 19 experience from the inside out. New York: Plume, Penguin Putnam Inc., 375 Hudson Street, New York, NY 10014, The author uses a disability rights standpoint to http://www.penguin.com discuss the international oppression of people with This book, edited by Kenny Fries, explores the disabilities. He provides a theoretical framework for experience of disability through writings by contributors understanding disability oppression not as something who have disabilities. The collection includes nonfic- that has come from the attitudes of people without tion, poetry, fiction, and drama by such authors as Nancy disabilities, but because of systems and structures of Mairs, John Hockenberry, Anne Finger, Adrienne Rich, oppression from which these attitudes stem. He uses Mark O'Brien, and Marilyn Hacker. Each chapter interviews with disability rights activists from around the explores disability not as something that limits one's life, world to support his argument. but as an experience all its own. Fries considers the theme of this edited book as one of human connection, "connection with the past, connection with one another, connection with our bodies, connection with ourselves." Crossley, R. (1997). Speechless: Facilitating communication for people without voices. New York: Dutton, Penguin USA, 375 Hudson Street, New York, NY 10014, http://www.penguin.com Eiesland, N. (1997). The disabled God: Toward a Rosemary Crossley has been a pioneer of and outspo- liberation theology of disability. Nashville, TN: Abingdon ken advocate for facilitated communication since the Press, 201 Eighth Ave. South, P 0. Box 801, Nashville, 1970s. Her recent book, Speechless: Facilitating communica- TN 37202-0801, 1-800-251-3320 tion for people without voices, is an in-depth look at the Through this book, Eiesland, who became disabled as experiences of 18 individuals who use facilitated commu- a child when she had polio, helps the reader to see how the nication. She describes the frustrations and complexities "hidden history" of conventional bodies living ordinary lives they face in their attempt to make themselves understood with grace and dignity, disgust and illusion, can make for by others in their environment. She also explains the both a theological and pastoral contribution. Arguing for a process of using facilitated communication, answering liberation theology, she calls on us to move away from our many of the questions raised about FC and demystifying defining of people with disabilities as people who need to many of the aspects of it that have troubled others. adjust to a minority group that is subject to social stigmati- zation. While her examples tend to be based on the experiences of people with physical disabilities, what she has to say also is insightful for those working to include people Davis, L. J.(Ed.). (1997). The Disability Studies with developmental disabilities in faith communities. reader. New York: Routledge, 29 West 35th Street, New York, NY 10001, 212-216-7800, FAX 212-564-7854, http://www.thomson.cotn/routledge Vt. This edited reader is a collection of classic and new Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability essays, as well as fiction and poetry, in the field of and culture. Berkeley: University of California Press, Disability Studies. This perspective places disability in a 2120 Berkeley Way, Berkeley, CA 94720, FAX 510 -643- political, social, and cultural context that theorizes the 7127, http://www-ucpress.berkeley.edu/ construction of disability in this society. The authors This edited book takes a global look at disability. Each address such areas as feminist theories of disability, the chapter reflects understandings of disability from different construction of deafness, and disability as metaphor. The cultures.Its anthropological focus examines the relation- book is divided into seven sections, including historical ship between disability and culture, explaining disability in perspectives, politics of disability, stigma and illness, terms of social processes from a multi-cultural perspective. gender and disability, disability and education, disability Contributing authors, who have done research in places such and culture, and fiction and poetry. This is progressive as Borneo, Kenya, Uganda, Nicaragua, as well as Europe and reading, but it should be of note that it is traditional in North America, explore the meanings of different types of the sense that Disability Studies translates to "physical disabilities to different cultures, and seek to understand the Disability Studies" and there is little mention of develop- assumptions about humanity and personhood derived from mental disability. their understandings of disability. Continued on page 21

PAGE 20 TASH Newsletter, Dec. 1999/Jan. 2000 CENTER 0.+:HUMAN POLICY

An Introduction to Disability Studies Mitchell, D. T., & Snyder, S. L. (Eds.) (1997). The Continued from page 20 body and physical difference: Discourses on disability. Ann Arbor: The University of Michigan Press, 839 Greene Street, PO. Box 1104, Ann Arbor, Michigan 48106- 1104, E-Mail: umpress- @umich.edu, http:// Johnstone, D. (1998). An introduction to Disability www.press.umich.edu/ Studies.London: David Fulton Publishers Ltd., This edited book by Mitchell and Snyder seeks to Ormond House, 26-27 Boswell Street, London WC IN introduce Disability Studies to the humanities by 3JD UNITED KINGDOM exploring how writers have used physical and cognitive The study of disability as an academic subject is of disabilities in literature. The chapters explore how relatively recent origin. Disability Studies has emerged as disability is seen in our culture in relation to "aberrance" a discipline for academic study in universities over the and "normalcy," and explores the meanings of health, the course of the last decade. This book sets out to explore construction of the body, citizenship, and morality in in a straightforward manner some of the themes that link relation to disability. The authors present a variety of Disability Studies with wider explorations of equal literary perspectives in two parts. Part I is "Representa- opportunities and social justice. tions in History" and chapters include such topics as "Constructions of Physical Disability in the Ancient Greek World: The Community Concept" by Martha Edwards; "Defining the Defective: Eugenics, Aesthetics, Linton, S. (1998). Claiming disability: Knowledge and Mass Culture in Early Twentieth-Century America" and identity. New York: New York University Press, 70 by Martin S. Pemick; and "Conspicuous Contribution Washington Square South, New York, NY 10012-1091, and American Cultural Dilemmas: Telethon Rituals of 1-800-996-6987, FAX 212-995-3833, E-Mail: Cleansing and Renewal" by Paul K. Longmore. Part II is [email protected], http://www.nyupress.nyu.edu "A History of Representations," and includes chapters In this book, Simi Linton studies disability in such as "Feminotopias: The Pleasures of 'Deformity' in relation to identity. She argues that Disability Studies Mid-Eighteenth-Century England" by Felicity A. must understand the meanings people make of variations Nussbaum; "The 'Talking Cure' (Again): Gossip and the in human behavior, appearance, and functioning, not Paralyzed Patriarchy" by Jan Gordon; and Disabled simply acknowledge that these variations "exist." Linton Women as Powerful Women in Petry, Morrison, and explores the divisions society constructs between those Lorde: Revising Black Female Subjectivity" by Rosemarie labeled disabled and those who are not. She avoids a Garland Thomson. medicalized discussion of disability and promotes the notion that people with disabilities need to claim their identities as disabled and as contributing members to the understanding of disability as a socio-political experience. Nagler, M. (Ed.). (1993). Perspectives on disability (2nd ed.). Palo Alto, CA: Health Markets Research, 851 Moana Court, Palo Alto, CA 94306 In this second edition edited by Mark Nagler, he once Linton, S. (1998). Disability Studies/Not Disability again explores the meaning of disability in our society. Studies. Disability & Society, 13(4), 525-540. Using an interdisciplinary perspective, he offers articles by In this article, Simi Linton seeks to define the sociologists, psychologists, therapists, and others to explore boundaries between what should be considered Disability the ways in which disability is constructed and understood. Studies and what should not. For reasons that she The book includes a foreword by Evan Kemp Jr. and an outlines, she proposes that curriculum and research that introduction by Nagler. He divides the book into the fol- emphasize intervention should be viewed as separate lowing sections: "What it means to be disabled," "Society from disabilities studies, which is a socio-political- and disability," "The family and disability," "Sexuality and cultural examination of disability. Linton advocates a disability," "Medical and psychological issues and disabil- liberal arts-based model similar to that which frames ity," "Education, employment, social planning and disabil- women's studies and African-American studies. ity," and "Legal and ethical issues and disability" The se- lections for this second edition are good, but there are not many articles relating to people with developmental disabilities. This is the one main weaknesses of this text. Continued on page 22

C1,2.AWMF-10V-Z,Rik ilAS:fixo;.11.1 PAGE 21 287 TASH Newsletter, Dec. 1999/Jan. 2000 CENTER N HUMAN POLICY

faMif 4W:a

An Introduction to Disability Studies Thomson's book explores the field of Disability Continued from page 21 Studies by framing disability from a minority perspective rather than a medical one, revising oppressive narratives and revealing liberatory ones. Examines disability in Harriet Beecher Stowe's Uncle Tom's Cabin, Rebecca Pelka, F (1997). The ABC-CLIO companion to the Harding Davis's Life in the Iron Mills, in African-American disability rights movement. Santa Barbara: ABC-CLIO, novels by Toni Morrison and Audre Lorde, and in the INC, 130 Cremona Drive, P.O. Box 1911, Santa Barbara, freak show CA 93116-1911, http://www.abc-clio.com/ This text is a general introduction to the disability rights movement and the people and coun cases that support or challenge it.It includes entries on such people as Ed Rob- This article includes excerpts from the Center's erts and Judy Heumann. The book is organized as a dic- Information Package on Disability Studies. To request a tionary, and has references from every aspect of the disabil- complete copy, please call 1-800-894-0826 within the ity rights movement, from court cases to famous people, to U.S. or 315-443-3851 all other areas. historical events and disability culture.It also includes a chronology, beginning with the founding of the American School for the Deaf in 1817 and concluding in 1996. Disability Studies at Syracuse University The Disability Studies concentration applies social, cultural, historical, and philosophical perspectives to the Schlesinger, L., & Taub, D. (Eds.).(1998). Teaching study of disability in society. Consistent with the sociology of disabilities. Washington, DC: American Socio- Syracuse tradition, this concentration stands at the logical Association (ASA) Teaching Resources, 1722 N forefront of change and new ways of thinking about and Street, N.W, Washington, DC 20036, http: / /wwwasanet.org accommodating people with disabilities. While it adopts Teaching sociology of disabilities is a collection of a cross-disability perspective, it devotes special attention syllabi and instructional materials on disability issues.It to people who have been labeled as developmentally can be purchased by ASA members for $17.00 and by disabled or mentally retarded. non-ASA members for $21.00. A copy can be down- For further information about the Disability Studies loaded from the ASA web site at no charge. concentration, please contact: Steven J. Taylor, Ph.D., Coordinator, Disability Studies Concentration at 315- 443 -3851 or via email at stayloOl @mailbox.syr.edu

Taylor, S. J. (1996). Disability Studies and Mental Retardation. Disability Studies Quarterly, 16(3), 4-13. (For a copy of this article, call 1-800-894-0826) The preparation of this article was supported in This article applies a Disability Studies perspective to part by the National Resource Center on the study of people labeled as having mental retardation or Supported Living and Choice, Center on Human cognitive disabilities and examines mental retardation as a Policy, School of Education, Syracuse University, social and cultural phenomenon. The article includes an through the U.S. Department of Education, extensive annotated bibliography on mental retardation and Office of Special Education and Rehabilitative Disability Studies by Steve Taylor and Perri Harris. Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133A990001. Members of the Center are encouraged to express their opinions; Thomson, R.G. (1997). Extraordinary bodies: Figur- however, these do not necessarily represent the ing physical disability in American culture and literature. New official position of NIDRR and no endorsement York: Columbia University Press, 562 West 113'h Street, should be inferred. New York, NY 10025, 1-800-944-8648, FAX 1- 800 -944- 1844, http://www.cc.columbia.edu/cu/cup/

F. f. 1,1M4491 ;;A:17.-FIF,r4,4 BEST COPYAVAILABLE PAGE 22 2 TASH Newsletter, Dec. 1999/Jan. 2000 Call for Presentations

International TASH Conference December 6-9, 2000 Fontainebleau Hilton - Miami

2000 Priority Topics Proposals may be submitted on any topic that relates to the inclusion of people with disabilities. Proposals will be rated by the interest areas listed on the form (page 3), however, The TASH 2000 Conference Committee has identified particular interest in the sub-topic areas listed below:

Advocacy Housing /Home of Your Own Paraprofessional Issues Building Alliances and CoalitionsIDEA Monitoring and Enforcement Personnel Preparation Community Living IDEA '97 Regulations Positive Approaches to Behavior *Creative and Performing Arts Impacting Legislation Change Communication Inclusive Education Strategies Qualitative & Quantitative Research Criminal Justice Independent Living Centers, Rare Syndromes Curriculum Adaptation Councils, or Services Rehab Act Deaf Culture Integrated Sports Related Services in Inclusive Education Deaf/Blindness International Inclusion Self-Advocacy Early Childhood Internet and Disability Self-Determination Educational Reform Issues of Death and Dying Special Health Care in Inclusive Settings Euthanasia Resistance Issues of World Peace & Social Sexuality, Romance, & Dating Employment and Careers Change Spirituality Family Issues Leisure and Recreation Teacher Preparation Functional Assessment for Life Transitions & Changes in Transition from School to Work Behavior Change Supports for Aging Adults Special Health Care Needs Governmental Affairs Managed Care Students Who Severely Challenge Schools Grassroots Organizing Management Issues But Who Do Not Have "Severe" Disabilities Guardianship Alternatives Mediation Systems Change at the Local Level Higher Education MiCASSA/Personal Assistance Systems Change at the Policy Level High School Inclusion Multicultural Issues Urban Education Issues

* Please note: TASH will not be able to provide staging, lighting, etc. in session rooms.

PAGE 2328 9 TASH Newsletter, Dec. 1999/Jan. 2000 Callfov- PlAesentati oils AS 2000 TA . Confe.v'e.nce. Mian,1 i Guidelines for Submission Send the Original and 3 copies of the Application and Abstract (postmarked) by March 20, 2000 to: Kelly Nelson, TASH , 29 West Susquehanna Avenue, Suite 210, Baltimore, MD 21204 Questions? Phone: 410-828-8274 TDD 410-828-1306 Website: http://www.tash.org Sorry, faxed or e-mailed copies cannot be accepted 1) All presenters are required to pay conference registration fees. TASH relies solely on membership and conference registration to be an effective advocacy organization. We strongly encourage presenters to be TASH members. 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. Panels are also encouraged to represent multicultural, under-served, and varying socioeconomic viewpoints. Presentations for consideration in the Community Living Strand will require participation of self-advocates and/or family members for acceptance. 3) Please complete all sections of the application. An abstract must be sent along with the completed application, postmarked by March 20, 2000. 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 format - i.e. skill-building, program discussion, panel, etc. 4) Proposal content must reflect the values and resolutions of TASH. TASH is dedicated to disseminating information that reflects both the ideals and the pragmatic realities of pursuing the goals of equity, social justice, diversity, 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 community-based. 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 included. 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 presentations 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) A basic package of audiovisual equipment will be available in all session rooms at no charge to presenters this year. This package includes an overhead projector and an 8x8 screen. If you require additional equipment (such as a slide projector, flipchart or markers, or TV/VCR), you may rent the equipment for the specified cost. Order forms for audiovisual equipment will be sent with acceptance letters. If a TV/VCR is rented, presenters are required to show tapes that are captioned. 9) At times letters of acceptance get lost, or go to an incorrect address. Letters indicating if proposals have been accepted are sent in 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 accepted or not accepted. It is the responsibility of the session coordinator to notify co-presenters of acceptance. 10) If accepted, you may not receive the session time frame or format you requested. Session assignments are based on the recommendations of reviewers, with final approval by the conference committee. Your session may be accepted as part of an In-focus Strand or as part of a general listing of sessions. The specific session room will be scheduled closer to the date of the conference. 11) All presenters are required to make the material for their session available in alternate format. Information on accessible formatting will be provided with letters of acceptance. The 2000 TASH Call for Presentations is available in alternate format upon request. Oral. PAGE242 90 TASH Newsletter,Dec. 1999/Jan. 2000 Call for' Peesentatiovts t S 2000 -CASH Confeeence 0 Miami

2000 TASH Conference Presentation Application Date Received: (please be sure a one page abstract is attached to this form) Session Code: COORDINATOR (You may only submit as a session coordinator ononeproposal) :

Please list below the address which you would like your letters sent in June. This address will be listed in the conference program:

ORGANIZATION :

ADDRESS: CITY:

STATE/PROVINCE: COUNTRY: ZIP/POSTAL CODE:

DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL:

The above address is: HOME WORK OTHER Session Information SESSION TITLE(please try to reflect the content of the session in the title to assist attendees in choosing a session):

Requested Session Type: I understand that it is my responsibility to contact (Please check only one) co-presenters regarding their participation in this session and to inform them of the requirements listed 1 HOUR SESSION on the guidelines for submission (including payment of 2 HOUR & 15 MINUTE SESSION conference registration fees) if accepted. POSTER SESSION TASH TECH (Pre-Conference Workshops) Signature(required)

Applicable Interest Area (This category determines which committee reviews your proposal. Please pick only one)

ADVOCACY EARLY CHILDHOOD PERSONNEL PREPARATION AGING EMPLOYMENT AND CAREERS POSITIVE APPROACHES ASSISTIVE TECHNOLOGY ETHICS/RIGHTS RELATED SERVICES CREATIVE/PERFORMING ARTS EUTHANASIA RESISTANCE RESEARCH COMMUNICATION FAMILY SELF-DETERMINATION COMMUNITY LIVING/HOUSING GUARDIANSHIP ALTERNATIVES SPECIAL HEALTH CARE NEEDS CRIMINAL JUSTICE GOVERNMENTAL AFFAIRS SPIRITUALITY INCLUSIVE EDUCATION HIGHER EDUCATION SEXUALITY/ SEXUAL EXPRESSION (pick one subcategory ) LEISURE AND RECREATION STUDENTS WHO SEVERELY CHALLENGE O Urban Education MANAGEMENT ISSUES SCHOOLS BUT WHO DO NOT HAVE 0 High School Incusion MULTICULTURAL/INTERNATIONAL "SEVERE" DISABIUTIES O International Inclusion PARAPROFESSIONAL 0 TRANSITION O Best Practice O Assessment O Other

PAGE 2 TASH Newsletter, Dec. 1999/Jan. 2000 Call fov. PiAesent-ations g§ 2000 TAS-F-I Confep'evAce ff1 Chicago Co-Presenter Information Please remember that it is the responsibility of the Session Chairperson to contact Co-presenters to obtain agreement from them regarding their participation in this session and to inform each Co-presenter of the requirements listed on the guidelines for submission (including payment of conference registration fees) if accepted for presentation at the 2000 TASH Conference.

NAME : ORGANIZATION : ADDRESS:

CITY: STATE/PROVINCE:

COUNTRY: ZIP/POSTAL CODE: DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL: The above address is: 0HOME 0WORK 0 OTHER

NAME : ORGANIZATION : ADDRESS:

CITY: STATE/PROVINCE:

COUNTRY: ZIP/POSTAL CODE: DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL: The above address is: 0HOME 0WORK 0 OTHER

NAME:

ORGANIZATION : ADDRESS:

CITY: STATE/PROVINCE:

COUNTRY: ZIP/POSTAL CODE: DAYTIME PHONE: HOME PHONE:

FAX: E-MAIL: The above address is: 0HOME 0WORK 0 OTHER

Thank you for your interest in presenting at the 2000 International TASH Conference Copy this page for additional presenters. Pass a copy of the entire application to a friend or colleague!

PAGE 26 TASH Newsletter, Dec. 1999/Jan. 2000 DECEMBER 1999/JANUARY 2000

PEABODY COLLEGE OF VANDERBILT UNIVERSITY 2000 Calendar of TASH Chapter and Position Member-Sponsored Announcements Conferences The Department of Special Edu- cation at Peabody College of Vanderbilt University is seeking candidates for Two Open Rank May 2000 Tenure-track Positions and One "Pioneer Spirit - Blazing New Trails" International Parent to Parent Practice Faculty Position in the Conference 2000 Area of Early Childhood Special May 5-7, 2000 Education (ECSE). Reno, Nevada. Host: Nevada University Affiliated Programs Applicants should have degrees Phone: (775) 784-4921 in ECSE, child development, de- FAX: (775) 784-4997 velopmental psychology, early childhood education, or closely related fields, excellent teaching records, commitment to collabo- July 2000 rative training with early child- First International Conference on Individualized Funding hood education, and program & Self-Determination management expertise. July 2931, 2000 Westin Seattle Hotel, Seattle, Washington Further information regarding For additional information on registration, sponsorship, or scholar- these ECSE positions can be ob- ships, contact Denise Marshall, TASH, 410-828-8274, ext. 103 or tained from Ann Kaiser 615- E-mail [email protected] 322 -8160 or 615-322-8150; a nn. kaiser@vande rbilt .edu).

Review of applications will begin December 2000 Annual TASH Conference on January 15 and will continue Miami, Florida until all positions are filled. The Fontainbleau Hilton Resort & Towers December 6, 2000 - Pre-Conference Workshops & Opening Reception Candidates from December 7 - 9, 2000 Annual TASH Conference underrepresented groups are especially encouraged to apply. Vanderbilt University and Peabody College are committed To have your event or conference added to our web site please send to promoting diversity in the information to Denise Marshall at [email protected] people and programs that or fax to 410-828-6706. constitute our environment.

PAGE 27 2 9 3 TASH Newsletter, Dec. 1999/Jan. 2000 REFLECTIONS FROM AN ORIGINAL BOARD MEMBER

We've Come Far...And Still Have Far To Go DOUG GUESS

My Early Involvement even basic quality-of-life with TASH accommodations. Many of When TASH was started in these residential institutions, November, 1974 I was employed as including one located in Winfield, the Director of the Psychology and Kansas, had histories of neglect Research Departments at a residen- and abuse toward the residents, tial center for persons with signifi- not unlike the documented living cant disabilities located in Topeka, conditions of persons in Willow- Kansas.I attended the Bureau of brook Hospital in New York City. Education for the Handicapped The early TASH meetings were (BEH)-sponsored seminar in Kansas informal, exciting, and stimulat- City in 1974, and was a member of ing. There existed at these the subcommittee that established meetings the opportunities to the American Association for the discuss procedures for teaching Education of the Severely/Pro- skills to persons who had been, for foundly Handicapped (AAESPH). I decades, perceived as not capable was appointed to the first Board of this new organization. I also of learning. I was especially involved at these meetings in introduced the Board members and newly elected officers at methods for teaching language and communication skills to the first official meeting of AAESPH in November, 1975. individuals who were nonverbal. Presentations often carried I have been involved with TASH since its conception in over into the evening hours where informal groups assembled 1974.I served on the Executive Board in all but three years to discuss varying approaches to communication training, between 1974 and 1988. I have served as secretary (1979/80) ranging from Chomsky to Piaget to Skinner. Even the early and Vice President (1987/88) of the Executive Board. During Board meetings of TASH devoted considerable time, discussion, my involvement with TASH I have been a member of 16 and debate on issues pertaining to teaching methods and standing or ad hoc committees, and was chairperson for four of approaches. these committees.I co-authored two monographs published by TASH. The first monograph (1984) was Legal, Economic, TASH's Influence in the Disability Field Psychological, and Moral Considerations on the Practice of With- TASH has played a major role in helping persuade various holding Medical Treatment from Infants with Congenital Defects. states to close institutions, develop community-based services The second monograph (1987) was Use of aversive procedures to replace them, and provide educational opportunities in with persons who are disabled: An historical review and critical public schools for students with significant disabilities. TASH analysis.Until this year, I have always been a reviewer for the was most instrumental in the effort to abolish the use of TASH journals, and was the Editor of JASH from 1981-1983. I punishers to change behavior, and replace these aversive have been a professor of Special Education at the University of procedures with the current positive behavior support treat- Kansas since 1976, and the area Coordinator in our Depart- ments. TASH has also been a significant change agent and ment for preparing teachers to provide educational services to advocate for the infusion of concepts and actions to improve students with severe and profound disabilities. the quality of life for persons with significant disabilities, such as opportunities for expressing choice and self-determination. How TASH Has Impacted the Lives of People with Over the years, TASH has brought a great deal of encour- Disabilities agement and support to the families and caregivers of When I became involved in the establishment of persons who experience severe and profound disabili- (TASH), most persons with significant disabilities ties. This has been accomplished through the role of resided in institutional settings where they TASH as a major advocate for this population of rarely received minimal educational and individuals, combined with a direct service vocational training opportunities and, in many cases, were not provided with Continued on page 29

PAGE28294 TASH Newsletter, Dec. 1999/Jan. 2000 SPIRIT-CENTERED LEADERSHIP

Continued from page 28 mission that facilitates both learning and Spirit-Centered Leadership community living opportunities. Within Inclusive Schools

Future Directions and Focus COLLEEN A. CAPPER, ASSOCIATE PROFESSOR of TASH's Work EDUCATIONAL ADMINISTRATION, UNIVERSITY OF WISCONSIN-MADISON TASH has been a social change agent for persons who have been MAUREEN W. KEYES, ASSISTANT PROFESSOR underserved and undervalued in our DEPARTMENT OF EXCEPTIONAL EDUCATION, UNIVERSITY OF WISCONSIN-MILWAUKEE society. The organization has not compromised its values, nor has it shied The capacity to challenges, and away from confronting societal policies develop inclusive\,...... _ reflections. school communi-...... _ Perhaps by and practices that are detrimental to ..._ tiesinto places expanding our individuals who experience significant '" where all recognition and disabilities and their families. This has students and staff are regard for spirit- included the practices of withholding valued members is centered leadership that medical treatment to infants born with dependent upon supports just and equitable disabilities, the use of pain-producing administrative leadership schooling for all, procedures designed to reduce challeng- and commitment (Keyes, affirmations of respect, ing behavior, the resistance to providing Hanley-Maxwell, & Capper, 1999). value, and human dignity for educational opportunities in regular We learned about the critical role that each will reverberate. schools, and the denial of choice and administrative leadership played in self-determination in everyday living. either making or breaking inclusive 1. Believing in a Divine Power TASH has provided in so many ways school communities (Fox & Ysseldyke, As opposed to what Parker Palmer 1997) through an extensive search of (1994) terms "'functional atheism'[or] the the opportunities for persons with current literature (Capper, Theoharis, & belief that ultimate responsibility for significant disabilities to participate, Keyes, 1998) and through our own everything rests with me"(p. 35), admin- with dignity, in a variety of home, research. istrators in our studies acknowledged a school, and community settings and For the past three years, we have divine or cosmic presence in their lives. services. We need, nevertheless, to conducted studies and taught a course However, they tended to separate formal renew our efforts on the "how." Our on the topic of spirituality in leadership religious beliefs from spirituality. One instructional capacity and technology for two times each aca- principal explained her teaching this population of children and demic school year definition of spiritual- adults has, I think, become quite (Capper, 1998). We "Educational leaders ity, "I believe it's stagnated in comparison to our "civil began to probe more should be most something within me, deeply into the style of my heart, my mind, my rights" accomplishments over the past attuned to their quarter of the century.I would like to leadership found within soul, it keeps me administrators focused and doing see a major effort to involve in TASH a own spirituality. staunchly supportive of what's good for new cadre of scholars and scientists Educators, of all inclusive communities, . children." In defining from diverse fields who can "brain- and we uncovered core people in our society, the ways that her storm" new and innovative procedures, values with spiritual ought to be in touch spirituality affects her approaches, and outcomes for educating origins as principals with the best that leadership, an adminis- children who experience significant revealed their beliefs trator said, "[Spiritual- disabilities.I would like to see TASH about inclusion as humans have thought ity] is so much more become once again a forum for explora- matters of justice and and written about the than morale. I have had tion, debate, and innovationa venue equity. In the following nobility and sacredness people say how sections, we offer a important morale is for new and creative thinking, and a of human life." model for good science based on our brief overview of the six and how we have to fundamental aspects established values. make our workplace gleaned from our somewhere people feel research findings on inclusiveadminis- good about, but it is more than thatit is trative leadership. And we invite readers an inner spiritualness it's a personal to help us continue our research by 0. offering your illustrations, questions, Continued on page 30 BEST COPY AVAILABLE PAGE 29295 TASH Newsletter, Dec. 1999/Jan. 2000 SPIRIT-CENTERED LEADERSHIP

Spirit-Centered Leadership sonal struggles of these spirit-centered whose life she couldn't value.' I said to her, Within Inclusive Schools leaders enhanced their understanding of `we can't judge one person's life as being Continued from page 29 others' perspectives. more valuable or not, because she is a person and deserves respect for who she experience, a spiritual side without being 3.Possessing a Sense of is, not judged by what her life could mean religiousit keeps me in balance." Divine Mission Oriented to another teacher." All these administra- Another principal explained, "It comes Toward Equity tors emphasized the importance of from within, that's what's happened to Bolman and Deal (1995) in their belonging in their schools not only with me. Believing in a greater power than popular book, Leading with Soul, advo- students, but with staff as well. me, it guides me." Vaill (1990) has cated for a leadership that "returns us to described how leaders need to create a ancient spiritual basicsreclaiming the 5.Believing People are unique definition of spirituality of their enduring human capacity that gives our Inherently Good Combined own, whether natural, supernatural, lives passion and purpose" (p. 6). The with a Bottom-Line secular or sacred. administrators spoke about the sense of These school leaders all believed divine mission they felt in their equity that staff and students were doing their 2. Valuing Personal Struggle work. These leaders believed they must best.As one administrator explained, "I Parker Palmer (1994) also described be good stewards of their own gifts and believe that people are inherently good the role depression played in his life, sought to create the conditions for the and that poverty, ignorance, abuse, and remembered those who "[stood] at gifts of others to come to fruition. One adversely affect people in ways that are the border of my solitude in that administrator explained, "The older I beyond their control."A second experience because they were not driven get, the more important it is for me to principal echoed, "I do believe that by their own fears to either 'fix' or make a difference because when people want to do the right thing.It's abandon me" (p. 39). The administrators it's all said and done, isn't that what our not that people are bad, it's sort of their with whom we have worked attributed existence is about, making a difference competitiveness, that if I give this up, I their capacity to effectively create an and leaving the world a little better place lose something." The principals noted inclusive environment for staff and than when we entered it?" A high that people who seemed angry or students in large part to their own school principal agreed, "I am really aggressive were probably in pain, and personal life struggles. For example, feeling that I have a purpose, there's a perhaps unable to express their unhap- one principal described his experience divine power that kind of guides me. piness in other ways. with a brother with disabilities who was My purpose in life is to support children Although the principals recognized scapegoated throughout school, did not and help them so they can be productive that others were moving along their own have friends, and ended up in prison citizens and figure out ways to support life paths, they believed that part of their after high school. Another administrator my staff to help children learn and grow. responsibility was to encourage indi- named several critical incidences on his That is my purpose, that is why God, viduals to consider other perspectives. spiritual journey. While recounting his the divine power, has put me here, One elementary principal explained, father's near death experience, he brought me this far." For these adminis- "One of the things I believe is so explained, "As a farm kid who grew up trators, not only did they feel guided by important is that staff members have to in central Illinois, I had the pleasure of a mission in their work, but this mission know who you are and what the non- working side-by-side with my father for was inspired and directed toward negotiables are....when their belief eighteen years. He was an incredible helping alleviate the struggles of others. system does not match what we say are man; a soft, sensitive giant.It was non-negotiable, we give them as much through these conversations with my 4. Advocating for Persons support as we can. ...but let them have father and brothers in the buttonweed Who Struggle an out." These principals practiced patches in the soybean fields where it Shaped in part by their own spiritually-centered leadership within was 95 degrees that I learned to be experiences of pain, these principals the context and goal of empowering all sensitive to others, to help thy neighbor, were especially sensitive to those who students. Not all ideas were open to to put in an honest days work regardless struggled in schools. For example, one critique, for example, whether students of the pay, and love and value nature principal shared about the suicide were protected from harassment from and land." Another administrator attempts of her sister and how this other students, or whether students with agreed, "I know what it's like.I know a influenced her leadership. She noted, disabilities would be included as much lot of things that people go through. My "I'm deeply affected when I see another as possible within the general education job is to accept people where they are human being hurt.I just can't stand it." classroom. The administrators were and hope that by what I say and what I Another administrator described how clear about their "bottom-line" goals, do that together we look at things. in a one teacher severely criticized a teaching however, they encouraged and sup- different way so that maybe they won't candidate at his school: "[The teacher] ported teachers to explore their own need to have anger or hostility to said, 'I couldn't live with that person.' ways to reach the goals. explain life to themselves." The per- She said the candidate was someone Continued on page 31

PAGEL30 Li 6. TASH Newsletter, Dec. 1999/Jan. 2000 TASH Newsletter, December 1999/January 2000

Spirit-Centered Leadership The Creation of TASH Within Inclusive Schools The authors can be reached at: Continued from page 14 Continued from page 30 Colleen A. Capper, Associate Professor Educational Administration 6. Gathering Spiritual Support University of Wisconsin-Madison REFERENCES: to Realize the Equity Dreams 1186D Educational Sciences Building Bureau of Education of the Handi- The principals acknowledged that 1025 West Johnson St. capped. (1971). Discretionary Grant advocating for students who struggled in Madison, WI 53711 Announcement. U.S. Government. school sometimes met with resistance. (608)263-6784 Fuller, P R. (1949). Operant con- Therefore, they cited the importance of E-mail: [email protected] ditioning of a vegetative human or- creating spiritual support for themselves ganism. American Journal of Psychol- to carry out their equity work. One Maureen W. Keyes, Assistant Professor ogy, 62, 587590. principal described how she and two Department of Exceptional Education Goldberg, J. I., & Cruickshank, other African American principals University of Wisconsin-Milwaukee W. M. (1958). The trainable but P.O. Box 413 Enderis noneducable: Whose responsibility? created ".... a support group that has grown to a membership of eleven other Milwaukee, WI 53201 N.E.A. Journal, 47, 622-623. (414)229-6725 Haring, N. G. (1977). Welcome African American [principals].. ..a group of very spiritual women." They E-mail: [email protected] address to the Second Annual gather once a month to brainstorm ideas AAESPH Conference. In N. G. in response to struggles, and to support References Haring & L. J. Brown (Eds.), new principals in navigating through the Bolman, Lee & Deal, Terrence E. Teaching the severely handicapped (Vol. political system. Another high school (1995). Leading with soul: An 11., pp. 3-1 1). New York: Grune & principal described the importance of uncommon journey of spirit. San Stratton. support in the midst of challenges: "The Francisco: Jossey-Bass. Haring, N. G., McCormick, L., more leadership you assume, the Capper, C. A. (1998). Leadership & Flaring, T. G. (1994). Exceptional antagonistic forces can attack you more and spirituality: A course syllabus children and youth. New and more and you may start being called (Unpublished syllabus ). Madison, York: Merrill/ Macmillan College the exact opposite of what it is you are WI: UW Madison. Publishing Company. Capper, C. A., Theoharis, G., & trying to do. ..people will say you don't Kazdin, A. E. (1978). History of care about kids.I think you have to Keyes, M. W. (1998, October, 1998). behavior modification: Experimental have a best friend in. the sense of The principal's role in inclusive foundations of contemporary research. spirituality or you self destruct." These schools for students with disabilities: Baltimore: University Park Press. spirit-centered administrators realized A meta-analysis. Paper presented at Martin, E. (1975). Welcome ad- that equity work can be difficult, and the University Council Educational dress to the First Annual AAESPH that they could not do it alone. They Administration, St. Louis, MO. Conference. In N. G. Haring & L. J. developed relationships with like- Fox, N. E., & Ysseldyke, J. E. Brown (Eds.), Teaching the severely minded people for ongoing spiritual (1997). Implementing inclusion at the handicapped (pp. 1-10). New York: support. middle level: Lessons from a negative Grune & Stratton. As Starratt and Guare (1995) invite, example. Exceptional Children, Mills v. Board of Education, Civil "Educational leaders should be most 64(1), 81-98. Action N. 1939-71 (District of Co- attuned to their own spirituality. Palmer; Parker (1994). Leading lumbia 1972). Educators, of all people in our society, from within: Out of the shadow, into Pennsylvania Association for Re- ought to be in touch with the best that the light. In Jay A. Conger; Spirit at tarded Children v. Commonwealth of humans have thought and written about work (pp. 19-40). San Francisco: Pennsylvania, Civil Action No. 71-41 the nobility and sacredness of human Jossey-Bass. (Judge Court, E: D. Pennsylvania life" (p. 196). We are not saying that all Starratt, Robert, J. & Guare, 1976). principals who are working toward Rita (1995). The spirituality of Sontag, E. (1976). Zem exclusion: equity in their schools share a similar leadership. Planning and Changing, No longer rhetoric. Columbus, OH: Ap- spirituality, or that all principals who Fall/Winter, 190-203. ropos, National Center in Education. engage in spiritual practices make equity Peter J. (1994). The requi- Sontag, E., Burke, P, & York, R. their priority. These six dimensions of a sites of visionary leadership.In Peter (1973). Considerations for serving spiritually-centered leadership, however, Vaill, Managing as a performing art (pp. the severely handicapped in the pub- illustrate how the spiritual beliefs of 211-224). San Francisco: Jossey-Bass. lic schools. Education and Training of innovative educational leaders inter-. Spirit-centered Leadership 1 the Mentally Retarded, 25, 16. twine with their inclusive practices, embracing the challenges of diversity.

. PAGE 3 9 TASH Newsletter, Dec. 1999/Jan. 2000 TASH NEWSLETTER

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. LizHealey, President Robert Holland Items in this Newsletter do not necessarily reflect attitudes held by individual Doug Bihlen, Vice President Bob Kafka members or the Association as a whole. TASH reserves the right to exercise edi- DonnaGilles,Chair of the Executive Committee Jay Klein torial judgement in selection of materials. LizObermayer,Secretary Debra Kunz All contributors and advertisers are asked to abide by the TASH policy on the JoeWykowshi, Treasurer Ming-Gon John Lian use of people-first language that emphasizes the humanity of people with dis- Tia Nelis abilities. Terms such as "the mentally retarded." "autistic children," and "disabled NancyWeiss,Executive Director individuals" refer to characteristics of individuals, not to individuals themselves. Jachi 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

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