DOCUMENT RESUME
ED 466 067 EC 309 035
AUTHOR Newton, Priscilla, Ed. TITLE TASH Connections, 2001. INSTITUTION TASH, Baltimore, MD. PUB DATE 2001-00-00 NOTE 227p.; Formerly known as, "TASH Newsletter." For 2000-2001 issues, see EC 309 034. AVAILABLE FROM TASH, 29 W. Susquehanna Ave., Suite 210, Baltimore, MD 21204 (available to TASH members only). Tel: 410-828-8274; Fax: 410-828-6706; TDD: 410-828-1306; Web site: http://www.tash.org. PUB TYPE Collected Works Serials (022) JOURNAL CIT TASH Connections; 27 2-12 Feb-Nov/Dec 2001 'EDRS PRICE MF01/PC10 Plus Postage. DESCRIPTORS Adults; Child Care Centers; College Students; Community Planning; Cultural Awareness; Developmental Disabilities; Early Childhood Education; Elementary Secondary Education; Family Needs; Family Programs; Higher Education; Homeowners; *Inclusive Schools; Individualized Education Programs; Interpersonal Relationship; *Literacy; Long Range Planning; Professional Development; Self Advocacy; *Self Determination; *Severe Disabilities; Social Integration; *Transitional Programs; Young Children
ABSTRACT Seven 2001 issues of the newsletter of TASH, formerly The Association for Persons with Severe Handicaps, comprise this document. Each issue typically contains news items, a column by the organization's executive director, reports from special interest groups, legislative testimony, conference information, and several major articles relating to equity, quality and social justice for people with disabilities. The February through November/December 2001 issues address:(1) self-determination, which includes the articles On Choice (Steven J. Taylor), Reflections on Risk (Dick.Sobsey), Self Determination (Liz Obermayer), and Securing the Future for People with Disabilities (Al Etmanski);(2) families planning together, which includes A Recovering Behaviorist (Jim McFalls), The Path to Community Participation (Dale Borman Fink), Families Planning Together (Michael W. Smull and others), The Evolution of an Unlikely Partnership between Researchers and Culturally Diverse Families: Lessons Learned (Betsy Santelli and others), and Draft PrincipleS for Individual and Family Self-Determination Partnerships;(3) increasing homeownership opportunities for people with disabilities, which includes articles on Unlocking a Universe of Opportunities in Housing (Becca Vaughn), Expanding Our Thinking on Housing Choice (Charlene Dwyer and Jerry Vogt), Sharing Their Story: The Massarelli Family Shows Legislators the Value of Homeownership (Catriona Johnson and others), and Accessible Home Mean Barrier-Free Friendships (Laura Hershey);(4) the agenda and workshops offered at the 2001 TASK conference;(5) transition as a component of the education process, which includes the articles Inclusion Goes to College: A Call to Action (Cate Weir and others), High School Inclusion + Seamless Transition = Desired Outcomes (Caren Sax and others), and Transition Is a Component of the Education Process (Richard L. Rosenberg and Bonnie Bolton); (6) building friendships and community connections, which includes Fully Funding the IDEA? How about Fully Complying with the IDEA? (Reed Martin), For
Reproductions supplied by EDRS are the best that can be made from the original document. Whom the Bell Tolls: Relationships, Love and Marriage for People with Developmental Disabilities (Dave Hingsburger), Attitude, Educational Practices Serve as Barriers to Friendship (Zech Rossetti and Carol Tashie); and (7)issues in early child care and education, which includes Young Childrens Citizenship in the Literate Community: Significant Disability and the Power of Early Childhood Inclusion (Chris Kleiwer and others), Early Childhood Intervention Personnel Preparation: Backward Mapping for Future Planning (Pamela J. Winton), and A Guide to Achieving Successful Inclusive Child Care--The Harry Potter Way (Peggy Florio). (CR)
Reproductions supplied by EDRS are the best that can be made from the original document. TASH Connections
Priscilla Newton, Editor
Volume 27 Numbers 211/12 FebNov/Dec 2001
U.S. DEPARTMENT OF EDUCATION Office of Educational Research and Improvement PERMISSION TO REPRODUCE AND EDUCATIONAL RESOURCES INFORMATION DISSEMINATE THIS MATERIAL HAS CENTER (ERIC) BEEN GRANTED BY This document has been reproduced as received from the person or organization originating it. P. Newton 0 Minor changes have been made to improve reproduction quality TO THE EDUCATIONAL RESOURCES INFORMATION CENTER (ERIC) Points of view or opinions stated in this document do not necessarily represent official OERI position or policy.
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2 VOLUME 27 ISSUE NUMBER 2 FEBRUARY 2001
Equity, Quality and Social Justice for People with Disabilities
I' ;,_ What=choke- really-alioutt-:;-,:;1;:s:i-,, Balancing safetc'ind Living a self determined life Increasing Consumer Control through The Ticket to Work Ad Future Planning , . Developing Personal Networks
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TABLE OF CONTENTS From the Editor What will not change is From the Executive Director Page 3 TASH's continued commit- 2001 TASH Conference Update Page 4 With few exceptions, change ment to provide its members TASH's Public Policy in Action Page 6 occurs at various stages of most with informative, thought- What is Choice Really About? Page 8 peoples' personal and/or provoking and inspiring Balancing Safety and Risk Page 11 Living a Self Determined Life Page 14 professional lives. If we are articles, resources and connec- The Ticket to Work: A Tool for Increasing fortunate, these rites of passage tions. Consumer Control Page 15 will be positive, sustaining Future Planning Page 21 experiences that help us to We appreciate the time many Developing Personal Networks Page 25 achieve growth and fulfillment of you have taken to share your as we gain new perspectives, opinions about the content of develop greater abilities, and the newsletter, and we invite establish broader relationships. you to continue to share your perspective about the issues TASH (formerly The Association for So, too, has TASH's newsletter covered in TASH Connections. Persons with Severe Handicaps) is an undergone various transforma- international advocacy association of tions over the years. At one Let us know what you think of people with disabilities, their family time an eight-page publication the new design. Your com- members, other advocates and people who work in the disability field. produced on newsprint, this ments may be sent to my TASH actively promotes_the full in- issue of TASH's news magazine attention at clusion and participation of persons introduces both a new name,
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: nweiss@tas h org For information on conferences, regional workshops, or technical assistance, call: Denise Marshall, Director of Training and Technical Assistance, at (410) fAsT11SFI 828- TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible; For questions about the 2001 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, c- all: Jamie Ruppmann, Director of Advocating for opportunities and rights; Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: [email protected] Eradicating injustices and inequities; For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these litigation; and, alternative firmats preferable. Call (410) 828 -8274 ext. 102 to request an alternative format. Requests forpermission to reprint material appearing in the TASH Newsletter should be sent to: TASH Newsletter, 29 W Susquehanna Avenue. Suite 210, Promoting excellence in services. 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 NEwsurrm, FEBRUARY 2001 FROM THE EXECUTIVE DIRECTOR
way of broader implementation of self- sweep a floor; we understand far less directed supports. about how to teach someone to make and keep friends. While we are committed to assuring that people have the right to self-directed Unfortunately, the latter skill has direct supports, we need also to identify the implications for the richness of life, skills a person needs to participate fully while the former is probably completely in the self-determination environment. irrelevant. A critical analysis of both the Young people with disabilities are going supports a person needs to successfully to emerge from federally mandated navigate the new opportunities made educational programs into support accessible by the move toward self- systems that offer opportunities to determination and the best ways to teach From the Executive Director decide: meaningful skills is needed. BY NANCY WEISS Where and with whom they are going Few would argue that the changes ver the past ten years there have to live, toward more self-directed supports have been important changes in the What kind of work they will do, been welcomed, have been too long in way people with disabilities and Who will provide the supports needed coming, and do not yet go far enough. their0 families choose to obtain supports. for success, and But with these changes have come new challenges for people with We are moving away from We are moving toward disabilities, family members and Professionals and others routinely making decisions People with disabilities want and need to make their people providing support. Some on behalf of people with disabilities own daily decisions as well as set their on course of these challenges are openly for the future discussed by self-advocates, People being supported to participate in more People with disabilities want and need opportunities family members,and people who inclusive living, learning and work environments to participate fully in inclusive home, school and work in the disability field, but only after there has been a professicinal assessment work communities many are not being openly of readiness addressed. Focusing on fostering independence through Relationship building, and achievement of personal teaching basic educational, daily living, and work aspirations and quality of life, as it is defined by the When there was an assumption skills person with a disability, are much more important that professionals knew what was than mastering basic skills best, individuals' with disabilities and their families often relinquished Even though there is clarity amongst What they will do in their spare time decision-making to the "experts." The people with disabilities, family members, toward building relationships, supports, selection of a course of action in a given and support providers that these more and community involvement. situation, while often counter to the individualized approaches are better in a desires of the individual or family, was multitude of ways, true individualized There is a need for greater focus on none-the-less, easily determined. In supports are difficult to achieve. Making what people need to know to make these moving toward a system that is respect- the move from more traditional services decisions and how best to teach these ful of the individual and his or her to more progressive supports presents skills. Certainly, I am not advocating a family, we have created a support challenges for organizations, managers, return to a continuum-based approach environment in which the best course of direct support staff, family members, andthat requires an individual to prove action is often unclear. for people with disabilities themselves. success at one level before being allowed to move to the next. However, there are There is strong agreement that an To say that the changes described above skills that will be helpful to people with individual with disabilities has a right to have had positive impact on the lives of disabilities, family members and profes- make his or her own decisions, but people with disabilities is an understate- sionals alike in navigating the realities offamily members and people providing ment; indeed, for many it has meant the progressive service systems. support confront situations regularly in difference between meaningful lives and which the choices an individual makes segregated existences. There are a We are much more likely to teach skills are discomforting or even potentially number of challenges that are inherent that we can task-analyze into small dangerous. What is the "right" response to a conversion to individualized teachable steps than we are to teach when an individual's choices are not approaches. The failure to address some those skills we have trouble understand- benign? of these challenges is standing in the ing how we ourselves learned. We know all about how to teach someone to Continued on page 7 PAGE 3 TASH HEMMER, FEBRUARY 2001 2001 TASH ANNUAL CONFERENCE
"Whoever controls the mediathe imagescontrols the culture." Allen Ginsberg
"Imaging the Future" 2001 TASH Conference Anaheim, California November 14-17, 2001
BY DENISE MARSHALL, TASH, Director of Meetings and Information Resources
Adt the meeting last December in Miami, members of the TASH Conference Commit- tee were brainstorming about possible themes for the 2001 meeting. Suddenly the oor opened, and 25-30 TASH members joined the meeting with enthusiasm arid focus. "The next conference needs to be about what creates positive images of people with disabilities!
The conference will be in Anaheim next year with the proximity of this location to Disney and Holly-- wood, now is the time!" And so, it is.
Daniel Keplinger, about whom the Academy Award winning film King Gimp, and the stun= ning and powerful Cingular advertisement released during the January 2001 Super Bowl were made, has agreed to speak at the opening general session of the 2001 TASH Confer- ence.
"I think Cingular showed courage to do something really differ ent and something significant about the importance of self- expression. What I especially liked was the message of the corn mercial and that I, as an artist, had been cast to symbolize self- expression. Too often the media depicts people with disabilities as a disability, not a person. The Cingular ad, -however, is about me as an artist and that's who I am. It's about the intensity and force of my painting and the freedom it gives me to soar. It's about the beauty of self-expression.
At Parkville High School, an artist was born and the artist was me. Art is what made my identity. In art, I could finally express Painting by Dan Keplinger more of myself. Art came from emotion very deep inside of me, saying what I had never said before, taking me in a new direction as far as I could go and then to a new place. With painting, I could express myself clearly without any body interpreting for me. I am so connected with painting The headstick is my only hand, although it has no fingers and it's slow, it gets the paint on the canvas. The minute my headstick goes on, I don't hear
Continued on page 5 PACE 4 6 TASH Hamm, FEBRUARY 2001 2001 TASH ANNUAL CONFERENCE
2001 TASH Annual Conference "Imaging the Future" Continued from page 4
other people in the room, everything is filtered out creating a state of purity possible only through art. I am confined by my physical being; my movement and my speech. When I taste freedom it is intoxication. Art gives me a freedoma way to communicate." Dan Keplinger
Throughout his life, in words and actions, Dan has embodied the values of TASH. Weare pleased that he will be joining us in Anaheim, helping to shape an incredibly powerful dia- logue about the role of media and advertising in changing the images of people with disabili- ties.
Energy, enthusiasm, and daring will characterize the TASH conference this fall. As many of you read last month the conference was to be held at the Anaheim Hilton, how- ever, that property does not meet the intent of the ADA. TASH stood by our commitment to full access for all and in TASH style, we held out ground and insisted that all means all. When the hotel could not comply, we pulled out of the contract and successfully negotiated with the Hilton to release us without penalty.
TASH is very pleased to announce that the conference will remain in Southern California. It will be held at the Marriott Anaheim and the Anaheim Convention Center. Cal-TASH, the California Chapter of TASH, will be co-sponsoring the conference in lieu of holdinga confer- ence of their own. Opportunities to be innovative abound!
We have long understood that greatest obstacles faced by people with disabilities and their families are imposed by society. Advertising and media are just one of theways images are formed. Understanding the influence that evokes positive images and attitudes toward people with disabilities is critical to effecting social change. Words, stories, movies, pictures, ads, articles, cartoons, books, and everyday interactions in the community are used toprove or disprove the beliefs that shape systems.
This year the conference committee has identified interest in presentations that address this theme of images. Proposals may be submitted on topics that demonstrate stories and strategies that have changed images, attitudes, systems, and empowered people to realize the full inclu- ion of people with disabilities in their home communities. Be a part of shaping the confer- ence by submitting to do a presentation, or encouraging friends and colleagues to beat this exciting gathering. For questions and guidelines about presenting visitour website at
For more information about Dan Keplinger, visit his website at
PAGE 5 7 TASH Navarro, FEBRUARY 2001 GOVERNMENTAL AFFAIRS
endorse this bill when it is reintro- If there is a positive "side" to the duced in the next few weeks. Tlie Garrett decision, it is that Justice AASA has made mandatory funding of Rehnquist wrote a very narrow IDEA an organizational priority and opinion, applying only to money will make a "major push all through damages and to Title I of the ADA September 2001" to get the proposal concerned with employment. Indi- passed. viduals with disabilities can file discriminations suits and request "injunctive relief." This means that successful lawsuits can require that employers fix the problems, restore Supreme court issues decision in employees to their former positions, Garrett and provide the accommodations necessary for successful employment. The Supreme Court handed down its In addition, people can still recover decision in the Board of Trustees of the attorneys' fees if they prevail. University of Alabama v. Garrett et al IDEA Full Funding Act Introduced case on February 21, 2001. In a 5-4 So, what are we to think? First, the decision, the Supreme Court held that ADA is NOT dead. This was a Representative Charles Bass (R- "Suits in federal court by state employ- limited decision, primarily about N.H.) will be reintroducing a bill to ees to recover money damages by money and pertaining specifically to make mandatory the full funding of reason of the State's failure to comply Title I of the ADA. Nonetheless, IDEA 97. The Mandatory IDEA with Title I of the ADA are barred by important remedies were taken away Full Funding Act sets a five year the Eleventh Amendment" (which from individuals seeking to secure timeline to provide the full autho- grants states "sovereignty" making their civil rights. Outrageous, too, is rized level of funding for Part B them "immune" from certain types of the idea that what the Congress sees (assistance to states)set by Congress judicial actions). Simply put, this and hears is somehow not "enough," 25 years ago. What makes this bill means that people with disabilities and that the idea opined in the majority different from the previous bills and cannot sue their states for money under opinion that there is not "evidence" of "resolutions" is that the funding will Title I of the ADA. systematic discrimination in employ- be mandatory no longer subject to ment is refuted by the appalling "such sums as appropriated" by the In a forceful dissent, Justice Breyer, unemployment rates of people with Congress. but guided by the follow- joined by Justices Stevens, Souter and disabilities. ing percentages of the average Ginsburg argued that the Court was current per-pupil expenditure in taking away the authority of Congress In his January 3 "New Freedom public elementary and secondary to "sponsor and support" the 14th Initiative" proposal President George schools: Amendment guaranteeing "equal W. Bush stated 'Because of the ADA, protections under the law." Further, discrimination against a person with a 20% for fiscal year 2002; 25% for Justice Breyer took issue with the disability is not just unkind or cruel or fiscal year 2003; 30% for fiscal year statements of the majority of the Court wrong: it is an infringement of federal law, 2004; 35% for fiscal year 2005 and, that "the legislative record of the ADA and a violation of civil rights. But the in 2006, state education agencies and ... simplyfails to show that Congress banning of discrimination is just the local school districts can expect did in fact identify a pattern of irratio- beginning of full participation in our funding levels to reach the autho- nal state discrimination in employment society. Though progress has been made in rized 40% and remain at that level against the disabled." In doing so, he the last decade, too many barriers remain. for each subsequent fiscal year. appended the dissent with over 35 Too many Americans with disabilities pages of State-by-State examples of remain trapped in bureaucracies of A large number of education discriminatory actions presented in dependence and are denied the tools and organizations including the Ameri- response to 13 Congressional hearings access necessary for success. My Adminis- can Association of School Adminis- and field hearings held in every state by tration is committed to tearing down these trators (AASA) and the National the Task Force on the Rights and barriers." Today the Supreme Court Education Association (NEA) have Empowerment of Americans with has erected a new barrier for the supported this language in the past Disabilities, attended by more the President to overcome WITH us as we and are expected to enthusiastically 30,000 people. seek the full participation that he has pledged to support. 8' fiS BEST COPY AVAILABLE Continued on page 7 PAGE 6 TASH Wawa'', FEBRUARY 2001 GOVERNMENTAL AFFAIRS
GOVERN MEN rAL A FFA IRS UPDATE Continued from page 6 From the Executive Director while fearing the consequences of this Continued from page 3 important step. Even in the most progressive agencies one The Family Opportunity Act of 2001 Take, for example, a support person who can observe person-centered planning privately wonders whether it is wise to meetings at which all participants are The Family Opportunity Act of 2001 allow an individual with frequent grand nodding their agreement to a proposed plan was reintroduced on February 8, 2001. mal seizures to travel back and forth from while privately, many may worry that they Sponsored by Senators Kennedy and work unaccompanied; what should the are alone in the concerns they harbor. Grassley and Congressmen Waxman and role of family members and support staff Reluctant to be viewed as less than progres- Sessions. The goal of the Family be when a person chooses to continue to sive or politically incorrect, such doubts are Opportunity Act is to give more children smoke in the face of life threatening not voiced. Support staff are likely to be emphysema; to have unprotected sex with disabilities access to a broad range influenced by the anticipated responses of with an individual known to have AIDS; others, including co-workers, supervisors, of health care services and supports. The to make him/herself vulnerable by neighbors, or funding agencies. Family vehicle to achieving this is to give parents walking through dangerous parts of the members may have difficulty viewing their the option of buying into Medicaid and city late at night; or to ride a bicycle with son or daughter as a person who is maturing paying on a sliding scale basis. This no regard for safety? When, if ever, is it and changing or, conversely, may know a Medicaid buy-in is important because it appropriate to intervene or to even much more competent side of the individual is designed to offer a very broad range of propose a plan that is counter to an than staff are able to perceive. The indi- services. The bill will allow states to individual's choices? How imminent vidual him or herself may be cognizant of offer Medicaid benefits to middle-income must the risk be? both the risks and benefits of a given course of action. families of children with disabilities for Some people feel that it would not be the first time (middle income is defined right to intervene in situations such as It must be the goal of progressive organiza- as 300% of poverty, which is $51,150 for those described above under any tions to develop cultures that promote open a family of four in most places). The circumstances, citing the fact that people discussion and a sense of safety for all team Family Opportunity Act does not without disabilities have the right to members to express themselves candidly. mandate that states provide this option; it make choices, and often do make When values conflict, the challenge to both allows them to offer the "buy-in." choices, that are unwise. Others would individuals and organizations is to weigh the Medicaid is a state-administered pro- feel it their responsibility to assure safety strength of one person's belief against those gram, with the federal government and well-being. What is absolutely true is held by all stakeholders. Open discussion that the best decisions will be made when providing "matching" funds and over- about beliefs and concerns is critical. people are able to engage in an open Environments in which every participant sight. discussion that takes into account the feels safe to voice concerns, including those varied points of view of all stakeholders. concerns that may seem out-of-sync with progressive approaches, allow each stake- Robert Perske discussed the importance holder to balance his or her own point of of risk taking as far back as 1972'. In the view with the viewpoint of the individual ensuing years, the importance of and the positions of other stakeholders. allowing, even purposefully incorporat- ing, opportunities for risk-taking has Without losing sight of the fact that an To sign up for the become well-accepted practice, but individual's choices are to be respected, people also value safety and success. organizations must fmd ways to encourage Government Relations When the values for safety and risk decision-making processes that value and listserve or for informa- conflict, decision making becomes encourage an open exchange of ideas. By tion about specific policy complex. Sometimes each stakeholder in focusing on the skills needed to determine issues or legislation, a situation is clear about his/her own one's own future and by encouraging open values but those beliefs conflict with contact Jamie discourse on values conflicts that arise, we those held by others. will have accomplished much toward Ruppmann, Director of assuring quality individualized supports for Governmental Relations, A young woman's parents, for example, greater numbers of people with disabilities. at (410) 828-8274, ext. may support their daughter's decision to 104 (voice); (410) 828- leave her group home for an apartment Reference: of her own, while staff may have genuine 'Perske, R. (1972). The dignity of risk and 1306 (TDD); or (410) concerns that she will not be successful. the mentally retarded. Mental Retardation, 828-6706 (fax). Just as often, values conflicts occur 10 (1), 24-26. within, rather than among, individual stakeholders. That is, any or all of the individuals participating in this discus- sion of living environments (including the young woman herself) may at once value the move toward independence
PAGE 7 9 TASH NEwsizraa. FEBRUARY 2001 WHAT IS CHOICE REALLY ABOUT?
The concept of "choice" is 0 Individualized funding. Sometimes discussed frequently in the field referred to as "self-determination" or of developmental disabilities "cash and counseling," individualized these days. Yet the concept means funding provides individuals with funds different things to different people, and is to arrange for their services and sup- used to justify radically different visions ports. A fiscal intermediary and service of the place of people with developmen- Oft Choice coordinator may be used to assist people tal disabilities in society. This article in managing funds allocated to them. presents some thoughts on the concept BY STEVEN J. TAYLOR of choice. 0 Person-directed personal assistance. Under this approach, people are able to Why is choice important? IAD select, hire, supervise, and, if necessary, 04 fire their support staff or personal &lb Historically, people with disabilities and assistants. their families were offered few, if any, choices in their lives. Families of lives. For adults, major choices include decisions about: 0 Person - centered planning. This is a children labeled with severe disabilities planning approach designed to identify had two options: to place their children people's capacities, needs, and desires. in institutions or keep them at home In which communities and neighbor- hoods to live with no publicly funded assistance or 0 Home of Your Own. This involves education. Adults labeled with severe Whether to live alone or with others innovative financing schemes to enable disabilities could be placed in public people with disabilities to own their own institutions or live in the community and, in the case of the latter, the specific person or persons with whom to live homes as opposed to living in agency with no services or supports. operated facilities. With the establishment of a federally Friendships and participation in community activities and associations 0 Family-centered support services. For guaranteed right to education and the children, in particular, families should expansion of community services, the control the services offered to them. options available to people with disabili- From whom and how to receive ties and their families slowly started to personal assistance and support expand. Nevertheless, many people Sexuality and sexual relations continue to be denied the opportunity to People without disabilities can make choices about the most basic make poor choices. Some people aspects of their lives. Where to work pursue unhealthy lifestyles or spend their money unwisely. Disability is What is choice really about? Medical treatment and therapeutic not a reason for depriving any interventions person from making the same choices other people have the right In my view, choice means that people make. with disabilities, regardless of the Choices about these matters determine severity of the disability, should be able the degree to which people can make to enjoy the same choices and options decisions about day-to-day things such as: available to other people in society. A Are all people capable of making public commitment to choice means that choices? public funds and programs should Meals and mealtime routines Bedtime routines support people in making these choices All people should be presumed compe- and selecting these options. It does not How to spend leisure time Dress and personal appearance tent to make choices about their lives. mean that public funds and programs Some people, however, may be limited in should support lifestyle choices and their ability to express their decisions. In living conditions other people do not What public policies and approaches are consistent with choice? these instances, every effort must be enjoy. made to ascertain their preferences and choices by people who know them well. What are some important choices that Public policies and service approaches should maximize personal control and Surrogates parents, family members, people should be able to make? and guardians choice. The following are some current will sometimes need to All people should be able to make approaches consistent with this prin- decisions over various aspects of their ciple: Continued on page 9 PACE 8 TASH MUMS, FEBRUARY 2001 WHAT IS CHOICE REALLY ABOUT?
On Choice Continued from page 8 How has the concept of choice been misused? 1 H E FOLLOWING BULLETINS AND FACT SHEETS RELATED TO make decisions on peoples' behalf when Increasingly, choice is used by some CHOICE ARE AVAILABLE FROM it is impossible to determine what they individuals and groups as a justification THE CENTER ON want. The choices that surrogates make for the continued institutionalization of HUMAN POLICY: in such circumstances should be limited some people with developmental to the range of choices and opportunitiesdisabilities. What is usually meant by Policy Bulletin on Safeguards (1993) available to people without disabilities. this is that parents and family members addresses how safety can be increased should have the option of deciding where by strengthening community and What about people who make bad and how their sons and daughters with improving the assistance people choices? disabilities should live. Although family receive. It also discusses the paradox members can play an important role in of regulations. (18 pages) People with or without disabilities can supporting people with developmental make bad choices. Some people pursue disabilities, they are not entitled to Fact Sheet on Self-Advocacy (1999) unhealthy lifestyles or spend their substitute their own interests and wishes by Mair Hall briefly defines what money poorly. Disability is not a reason for those of people with disabilities. The self-advocacy is, provides a brief for depriving any person from making condemnation of institutions by orga- history of the Self-Advocacy/People the same choices other people have the nized self-advocacy groups testifies to the First Movement, and includes a brief right to make. Nor is disability a reason fact that people with developmental list of resources. (2 pages) for supporting people with disabilities to disabilities do not wish to be put away. make decisions (e.g., physician-assisted Fact Sheet: Summary of Self- suicide) that persons without disabilities The phrase "one size fits all" is some- Determination (1998) by Michael J. are not entitled to make. times quoted by proponents of institu- Kennedy and Lori Lewin summa- tions to characterize the policy of rizes what self-determination is and Family-members, friends, and loved onescommunity inclusion. Yet, it is the is not, the principles of self-determi- can and do influence the behavior of institution with well-documented nation, the values supported by self- others. The strongest safeguard of the patterns of "block treatment" and determination, and a call for changes well-being of any person is to be in- rigidity of routines that epitomizes in the system in order for self- volved in caring relationships in which "one size fits all." In the community, determination to truly succeed. (2 people influence each other in non- there is unlimited variety and opportu- pages) coercive and non-manipulative ways. nity to pursue lifestyles based on individual needs and preferences. Fact Sheet: In Support of Families Choice should never be used to justify and Their Children (2000) by Nancy neglect, poverty, or an absence of Any adult has the right to decide with Rosenau discusses why children realistic options. People do not choose to whom to associate. Some groups have belong in families and how to assure go hungry or be homeless. To people chosen to segregate themselves from the families for all children. (2 pages) who might make bad lifestyle or spend- wider society based on religious, ethnic, ing decisions, we should be magnani- and other grounds. Some parents Feature Issue on Institution Closure mous. choose to send their nondisabled (Winter 1995/96) edited by Mary R children to boarding schools where they Hayden, K. Charlie Lakin, and Steve can be with students of similar ethnic, Taylor contains national information religious, or economic backgrounds. In as well as a variety of articles on a democratic society people have the closing institutions written from the Although family right to choose segregation to perspectives of self-advocates, members can play an associate with only those persons professionals, parents, researchers, important role in supportin people with developmental presumed to be exactly like themselves. and policy makers. This bulletin was disabilities, they are not But society has no responsibility to published through the Impact series entitled to substitute their subsidize segregation. Public policy of the Institute on Community own interests and wishes toward people with disabilities should Integration at the University of for those of people with support opportunities to make the same Minnesota in cooperation with the disabilities. choices other people make nothing Center on Human Policy. more and nothing less.
Continued on page 10
PAGE 9 TASH NEwsumn, FEBRUARY 2001 WHAT IS CHOICE REALLY ABOUT?
On Choice Continued from page 9 Italy Seminar
Education in Italy: Center on Human Policy. An Inclusive Approach Fact Sheet: What is "Permanency"? (2000) by Nancy Rosenau describes the importance of permanency for children and discusses strategies to support May 16-June 11, 2001 and implement it. (2 pages) Syracuse University
Fact Sheet: The Community Imperative (2000) In 1979, the Center on Why study inclusive education in Human Policy at Syracuse University wrote The Community Imperative, a Italy? United Nations observers cite declaration supporting the right of all people with disabilities to community Italy's programs as the most inclusive living. The Center has reissued The Community Imperative in 2000 and in the world. There are site visits to schools in Rome, Florence, Bologna, invites endorsements from individuals and organizations. Parma, and a rural village near Naples; guest lecturers from local, regional and Internet Resources Related to Choice national levels.
Advocating Change Together Time is planned for enriching cultural http://www.selfadvocacy.com/ experiences involving the history, art, and architecture in Rome, Florence, Venice, Parma, Pompeii, and Orvieto. Self Advocates Becoming Empowered http://www.sabeusa.org/ Write or call Dr. Carol Berrigan, Seminar Dfrector, of Syracuse Univer- National Program Office on Self-Determination sity for more program information at: http://www.self-determination.org/ Center on Human Policy, Syracuse University, 805 S. Crouse Avenue, Center on Human Policy Syracuse, NY 13244-2280; Phone: (315) http://www.soeweb.syr.edu/thechp/ 443-3851; E-mail:
National Home of Your Own Alliance http://alliance.unh.edu/ How does the latest rulemaking and legislation Institute on Community Integration, University of Minnesota http: //ici.umn.edu/ coming out of Capitol Hill affect you and your fam- ily? How can you join with Steven J Taylor, Ph.D. is Director of the Center on Human Policy at Syracuse others to make a differ- University. Questions or comments regarding this article may be directed to Dr. ence and ensure that your Taylor by e-mail at
I thought of one young man who had 1 the risk of playing with other kids is a recently died there. Another resident of normal risk. Furthermore, it is a risk that the institution had gotten a small jar of David chooses to take. As parents there peanut butter. It was his most precious may be times when we have to step in possession, and he kept it in his shirt so because the risk is too high. When the it would not be stolen. One day, the risks are reasonable, however, why not REFtiffitiS OH glass jar slipped out and smashed on the let David make his own decision? floor. As the former owner of the peanut RISK butter stood in shock, Mark, as I'll call BY DICK SOBSEY him here, deftly scooped up the mixture Louise and I would like to keep him of broken glass and peanut butter, and perfectly safe, but the risks associated he ate it. Of course, eating broken glass with being in the game are actually a lot is never a good idea but broken glass less than the costs of keeping him out of mixed with peanut butter is a lot worse. it. He can get hurt playing with other Mark seemed to be recovering, but kids, but that risk does not justify the sudden1S, died a couple of weeks later. I cost of giving up his chance to have felt sad about it, but reading that article, friends. About 150 years ago, one tears of grief turned to tears of rage. I authority on risk management summed For about thirty years now, I've wanted a gravestone for Mark that said, it up as follows: " 'Tis better to have loved been thinking about the risks and "Dead at 24. Protected from the risks of and lost than never to have loved at all." how to manage them. I remembera normal life." (Tennyson, 1850). one of the things that made me start thinking about different kinds of risk a Since then, I think a lot about risk. In the A- lot of the risk that people seem long time ago. It was an article by Bob middle of writing the paragraph above, concerned about these days is the risk Perske (1972) about the dignity of my son's school called to say, "David got legitimate risk. I'm not sure now if that for abuse and exploitation. I've been one hit in the face by a soccer ball, and he's of the agitators that have been worrying was the first time I read something by bleeding from his nose and mouth." By people about this. I've spent a lot of the Perske that made me think and rethink the time my wife, Louise,. and I got to last 15 years trying to get people to see things, but it was certainly not the last. the school, David seemed fine, and most that violence is a huge problem for His work over the years has had wonder- of the blood had been cleaned up. people with disabilities, so I am not ful impact on a lot of us, making us look David's disability makes it hard for him going to trivialize it now. Nevertheless, I at things from a slightly different to protect himself when playing with do need to say that misguided attempts perspective, making us think a little other kids. Nevertheless, David is in the to protect people can do more harm differently and, more importantly, game. The boy who kicked the ball is a than good. I suggest two tests to deter- making us feel differently about things. friend of David's. He comes over to play mine whether protection strategies are at our house from time to time. So are appropriate. First, identify to what I had been working in a large institution most of the other kids who were playing degree the risk is controllable and how for a long time then. One of the main soccer that day. much difference the prevention strategy reasons that people ended up there was is likely to make. Second, consider the that someone wanted to-protect them David has had no more and probably a cost to the individual who is being from the outside world. I have no doubt lot fewer cuts, scrapes, bruiseg, bloody protected, particularly social and that there really were some risks that noses than most ten-year-olds I know. So emotional costs. they were spared by being "put away," but there were a lot of other risks that For parents and family members who increased. Hepatitis, a wide variety of are horrified to learn that children with parasites and other communicable disabilities are more than three times as diseases were common. In the crowded likely to be abused as other children, it is and understaffed dining halls, people important to think about two kinds of choked to death because they learned to potential abuse -- intrafamilial and stuff food in their mouths as quickly as extrafamilial. Intrafamilial risk is the they could before it was stolen by most controllable. Many children with another resident or taken away by staff. disabilities are abused by members of Everyone was neglected. Most were their own families, most often parents. assaulted, and many were sexually abused. Continued on page 12
PAGE 11 TASH Banaa, FEBRUARY 2001 BALANCING SAFETY AND RISK
REFLECTIONS ON RISK this does not mean that there is no to the community, which they believed Continued from page 11 security to keep strangers from entering, was more important. The father of a but security is not an excuse for isola- young man who lived in an institution tion. once told me that his son had been abused there, but he would not report it The "good" side of this sad fact is that In considering the cost of violence because he strongly believed that the we actually have a lot more control over prevention strategies, think about institution was the best place for his son. this. If, as a parent or family member, wewhether strategies empower or In his words, he "did not want to drive can honestly feel secure that our child disempower the people who they are another nail in the coffin" of the and loved ones are safe with us and supposed to protect. Better communica- institution. In my opinion, both of these reasonably secure that he or she is safe tion and sex education, facilitating individuals are making a serious mis- with the rest of our family, we immedi- appropriate social and sexual relation- take. The moment we agree not to ately remove a large slice of that in- ships, and empowering people to chose confront the problems of abuse and creased risk. and reject where they go and who they neglect because confronting the problem go with are all strategies that can keep conflicts with some greater goal, we people safer. have accepted abuse as a permanent Restricting people from doing what reality. they want in order to keep them safe is Restricting people from doing what they disempowering. This does not mean want in order to keep them safe is Risk in these arguments becomes a that restricting an individual's choices disempowering. This does not mean that political pawn for a much broader is always the wrong thing to do, but in restricting an individual's choices is agenda. As a researcher, I will tell you always the wrong thing to do, but in my that I still believe that the risk of vio- my opinion many use it much too often. opinion many use it much too often. It lence and neglect is higher in isolated It should be used only when the stakes should be used only when the stakes are institutions. I also need to say: (a) the are high, harm is likely, and there is high, harm is likely, and there is no comparisons are difficult to make in a no empowering or even less intrusive empowering or even less intrusive completely objective way; (b) there-are strategy available. strategy available. good arguments made on both sides; and (c) deinstitutionalization, in itself, For example, we would not allow our has not and will not solve the abuse and son to go out to the store by himself neglect problem. The more important If some of us are not 100% sure that our because there is good reason to believe concern, in my view, is that politicizing child or loved one is safe with us, the he would he in serious danger. For now, the issue of risk for or against commu- most important thing we can do is to get that restriction is justified. If he can nity living is wrong. BOth sides need to the help we need. If anyone is suffering learn to keep himself safe, however, that pay more attention to solving the from depression, has anger management would replace a restrictive strategy for problem and less attention to whose problems, or is having difficulty coping protection with an empowering one. agenda is served. with stress, he or she needs to deal with Risk can also be categorized by its those issues. political impact. There has been a lot of The living conditions in some group discussion of the relative risks of homes and other community-based There are also reasonable strategies for institutional placement and community living alternatives have been horrible minimizing risk for abuse from external alternatives. Some researchers have (e.g., Horwitz & Boo, 2000). No one sources. Choose caregivers and pro- suggested that deinstitutionalization has should have to live under those condi- grams carefully. Use agencies that check been accompanied by neglect, abuse, tions. The concerns raised about death police records and screen staff carefully. and increased death rates. Others have rates and other problems (e.g., Strauss & Ask agencies about their policies. Avoid argued that this analysis is biased and Kastner, 1996) among people returning agencies and programs that isolate you that the risks are actually much higher in to the community should not be simply from your child. institutions. Service providers and ignored or repudiated by advocates for parents also have politicized risks at community living. People have a right to For example, if a day care has no times. A social worker once told me life in the community AND they have a unobstructed windows, makes you ring aabout a group home they found where right to decent living conditions. No buzzer to get in, then keeps you in the former residents of a large institution one should have to choose one or the office while your child is brought to you, were kept in chains and abused. While other, and realizing the promise of it is probably time to get your child out they got the residents out, they did not community living does not mean just of there. Parents and families should report the abuse because they felt that being a little better than an institution. have a way to see what things are like the publicity would slow down the move when visitors are unexpected. Of course, Continued on page 13 PAGE 12 14 TASH NEwarrre, FEBRUARY 2001 BALANCING SAFETY AND RISK atop REFLECTIONS ON RISK Ion Continued from page 12 vitseitever spporttrxstiottlittet A hundred years ago W.E.B. DuBois 1. Go to igive.com or (1901-1969) wrote eloquently about the greatergood.com on the web. hardships faced by former slaves return- 2. Follow the simple ing to the community. The problems that instructions to register as a new he identified were significant ones, and member. Before shopping, some people tried to use DuBois' work make sure to identify TASH as to argue that abolition had been a the organization you wish to mistake. DuBois did not let himself be support. drawn into the argument of whether Shop online 3. Click on any of the emancipation might have done more hundreds of websites to shop harm than good. He did not ignore the as you normally would! problems to avoid the argument. through Up to 15% of your total pur- Instead, DuBois insisted that all people igive.comor chases will be donated to TASH. had a right to their freedom and a had right to decent living conditions. In Other great deals available to much the same way, we need to face the greatergood.com you as a member of igive.com risks of -abuse and neglect in community and greatergood.com include settings squarely. We need to continue TODAY! to-push for community living, but we Discounts from select stores also need to push just as hard for quality We've made it convenient and services that keep people safe. simple for you to shop online and Free shipping offers support the work of TASH at the Dick Sobsey is Director of the Developmen- tal Disabilities Centre at the University of same time. Your purchases will cost An entire online mall filled Alberta, Edmonton, and a member of the no more but TASH will benefit! with brand name mer- TASH Executive Board of Directors. chants ready to serve you! Questions or comments concerning this By shopping through igive.com or article may be directed to Mr. Sobsey by e- greatergood.com, two popular mail at
Freedom: In my opinion, this is the sometimes that people with disabili- most important principle because for ties take advantage of people who Self De lepmination such a long time people with disabilities support them. I mean sometimes were not allowed to live a free life even people with disabilities will expect BY LIZ OBERMAYER though our country is based on this people without disabilities to help and fundamental right. Most of the time they don't offer anything in return. people lived in an institution or a This is fine if the person is getting controlled environment. For the past paid to help you, like used to be the couple of years, I have lived in a world case with me, however now it's not. /am a person with a developmental where I make the decisions and I can Sometimes all I can do is to listen to disability and like most people with make choices for myself. my friends' problems, but there are a developmental disability, I usually other times I can do more. I like was told what, when or how to do I also have the freedom to come and go knowing that I am making my friends something. Sometimes I wasn't even wherever I want, and make the decision feel better because it makes me feel given a choice. This went on for years whether I want to tell someone where I like it's a true friendship. My friend, and years. Parents and professionals am going. I refuse to go back to a world Nancy Ward, once said that support didn't think anything of it, and people where I am controlled. My friends also should "go both ways." with developmental disabilities didn't enjoy the same kind of freedom I enjoy. know any better, because that's how life Responsibility: This principle is also was. Other people made all kinds of Authority: When I looked up the word one of the important principles of the choices for us, ranging from where to " authority" in the dictionary, it says self determination movement. I also live to as simple a matter as what to something like the power to influence a enjoy talking about this one. A lot of wear. command or thought. To me it means, I people without disabilities will often have the authority or power over my life complain that people with disabilities That is until my friends and I learned and I have the final say over things. My don't want to take responsibility for about something that people have been friends and I struggle everyday to get the their own life. They say that people calling self determination. Self determi- authority over our lives because I think with disabilities would like all the nation is a very simple concept, I think. some people without disabilities don't rights and privileges that go along People with disabilities are just saying see us having the capability of having with living and working in the that we should be able to control our the authority over our own lives. community, however when it comes lives just like anyone else does. That to taking responsibility to live or work means simple decisions like what to For example, when I was moving from in the community, that's another wear or eat or where to live, to more Massachusetts to the Maryland area, my story. complicated tasks like controlling our parents helped me get my apartment. We own resources. saw two apartments and then when it Just as there may be a certain percent- came down to making the final decision, age of people without disabilities who Parents and professionals usually will I made it all by myself, based on what I do not want to work, you will find a say that we shouldn't be able to control wanted. This wasn't the case when I segment of people with disabilities or make decisions for our lives because moved to Boston from a controlled who feel the same. However, there we can't make responsible and good environment. are a lot of people with disabilities choices. My argument to this is that all who do want to contribute to their people can learn from events or deci- Support:This is my favorite principle communities and earn their own sions that may not turn out as planned. of all because I think everyone, regard- living using their own skills and Another argument could be that I am less if you have a disability or not, needs talents. Lots of people with disabili- sure not every decision or choice my some kind of support. When I no longerties work at their chosen profession parents or someone made would turn required paid support, I formed a circle everyday, just as lots of people out to be a good or a responsible choice. of support. I like calling it a circle of without disabilities do. And those of friends. The reason why I call it that is us who choose to work and are given Self determination has changed my life because I would like to get my support the opportunity to work, understand for the better because for the first time, I from my friends, not from people who that it is our responsibility to do so if am learning about what it means to just support me because they have to. I we can. control my life. As I have understood the think if people don't get support then concept, there are four main points to people, regardless of disability or not, Last year, we as self-advocates added self determination. They are freedom, won't have happy and productive lives. a fifth principle, Self-Advocacy. We authority, support and responsibility. I believe that if it wasn't for self will now describe how each concept My circle is a circle that I give support to effects my life and the live of my friends: just as much as they support me. I worry Continued on page 27 PAGE 14 16 TASK NEWSLETS, FEBRUARY 2001 INCREASING CONSUMER CONTROL
THE TICKET TO WORK: publish final tions providing services under the ticket A TOOL INTENDED TO INCREASE regulations in the program are called Employment Spring of 2001. Networks (EN). CONSUMER CONTROL OVER In the preamble EMPLOYMENT SUPPORTS to the regulations What types of organizations can be for the Ticket to Employment Networks? BY JOHN BUTTERWORTH, DAVID HOFF, Work, SSA ELENA VARNEY, AND JOE MARRONE makes it clear A wide range of organizations can be CD ,a that the program Employment Networks. These include has two compat- both public and private organizations. ible goals: State Public Vocational Rehabilitation agencies must be an Employment NOTE: The information in this article is "To expand the universe of service Network, if they wish to receive any based on proposed regulations that were providers available to beneficiaries with funding from SSA for providing services. published in December, 2000. The final disabilities who are seeking employment Other Employment Networks can regulations may change some of the details ofservices, ..." include: other state, county and local the Ticket to Work program. "...To provide beneficiaries with real public agencies (including Mental choices in getting the services they need Health, Developmental Disability/ to obtain, regain, or maintain employ- Mental Retardation agencies), commu- In December 1999, President Clinton ment." nity rehabilitation providers, supported signed into law the Ticket to Work employment agencies, schools, One-Stop and Work Incentives Improvement The Ticket to Work Program - What IsCenters, and similar organizations Act of 1999 (TWWIIA), to enhance the It? which have traditionally been in the ability of people with disabilities to go to business of helping people find employ- work. This new law does a number of The basic idea of the ticket program is to ment. (SSA also expects that some non- things, including requiring SSA to maximize choice by allowing you to traditional entities may wish to become establish a "Ticket to Work and Self- select your own employment or rehabili- Employment Networks.) Sufficiency Program," where individuals tation provider, and for Social Security receiving Social Security disability to pay that provider based only on a What is my ticket worth? benefits (SSI or SSDI) can choose successful outcome. This outcome is services to assist them in finding and defined in the law as successfully getting The amount paid to an Employment maintaining employment, and reduce a person in a job which provides suffi- Network is based on a percent of the their_ dependence on cash benefit cient income that you no longer get a prior calendar year's national average programs. monthly SSI or SSDI check. disability benefits payable under Title II (SSDI) or Title XVI (SSI), and not on The Ticket to Work program will be The ticket program is being phased in the individual's benefit amount. The implemented beginning in 2001 on a nationally over a three-year period amounts will be adjusted on an annual state-by-state basis. Despite significant beginning in 2001. The first tickets will basis for cost of living. The charts at the concerns about the regulations that have be issued in 2001 in the following states: bottom of this page outline the two been proposed, the Ticket offers the Arizona, New York, Colorado, Okla- payment systems as proposed. potential for individuals to have greater homa, Delaware, Oregon, Florida, control over their employment supports. South Carolina, Illinois, Vermont, Iowa, Employment Networks receive monthly This article provides an overview of the Wisconsin, Massachusetts. By January payments only for those months when Ticket program based on the proposed 1, 2004, the ticket program will be the beneficiary does not receive a check regulations. The TASH Employment nationwide. from SSA. Therefore, while an EN can Committee encourages individuals and receive up to 60 monthly payments, organizations to use the Ticket as a tool When the ticket program begins in a these months may not be consecutive. In for individual and organizational state, individuals receiving Social fact, under the proposed regulations, change, and as leverage in redirecting Security disability benefits (SSI - Supple- these 60 monthly payments could be resources to integrated employment. mentary Security Income; SSDI - Social spread out over up to 14 years from the Security Disability Insurance) will time an individual first starts receiving This summary is based on regulations receive a "ticket" (a paper document). services under the ticket program. for the Ticket program that were The person with a disability can then use proposed in December, 2000. The Social this "ticket" to obtain services to help Security Administration is expected to them find and keep a job. The organiza- Continued on page 16 PAGE 15 i 7 TAN Navarro, FEBRUARY 2001 INCREASING CONSUMER CONTROL
THE TICKET TO WORK: A TOOL How much do I have to earn to elimi- How else will the ticket program help INTENDED TO INCREASE CON- nate my monthly social security check?individuals? SUMER CONTROL OVER EMPLOY- MENT SUPPORTS SSDI Suspension of Continuing Disabilities Continued from page 15 Currently, SSDI checks for individuals Reviews while Using the Ticket. SSA stop when you earn more than $740 per conducts continuing disability reviews However, if an Employment Network is month ($1170 per month for individuals (CDRs) to determine whether or not you able to quickly assist you in finding who are blind), and you have used up all continue to be considered disabled employment, and you work steadily at a your trial work months (trial work according to SSA's definition and job with sufficient income so that you months are months when an SSDI criteria. Social Security benefits end if don't receive a social security check, the recipient earns over $530 per month; medical or other evidence shows that Employment Network could receive all SSDI recipients can work for 9 trial workyou are no longer disabled. SSA must 60 payments in about 5 years. months over a rolling five year period conduct CDRs at least once every 3 without impacting their benefits, and years for most recipients. Persons The proposed regulations outline two receive checks for 3 more months when deemed permanently disabled are payment systems that an Employment the trial work months have been used reviewed less frequently, usually every 5 Network must choose from: up). to 7 years. While participation in the ticket program is voluntary, a major Outcome payment system: The SSI incentive for people with disabilities to Employment Network receives a flat Unlike SSDI, there is no standard use the ticket is that you cannot have a monthly fee for each month (up to 60 income level where your SSI check is CDR while your ticket is assigned to an months) that the individual does not reduced to zero. Instead, the amount Employment Network, (Subpart C). receive a check from Social Security. varies, depending on the amount of your (Note: The regulations specify that the monthly SSI check from the federal The Ticket and Individual Choice and individual receive no federal benefit, government. The formula to calculate Control implying that in states where the state this is: [(Monthly SSI Payment - State supplements the federal check, the Supplement) X 2] + $85. (Many states The regulations contain a number of individual could still be receiving that add an additional amount to SSI checks, elements so that people with disabilities supplement in the form of a check from which is called the "state supplement"; have choice and control. These include: SSA). under the ticket regulations, only your federal SSI payment has to be reduced to Participation in the ticket program is Milestone payment system: The zero for the EN to be paid.) The current voluntary. Employment Network receives two average monthly federal SSI cash benefit "milestone" payments along with a is $440, so for evaluating the ticket If you are dissatisfied with your reduced monthly outcome payment for program, it is reasonable to use a figure Employment Network you may assign up to 60 months. Both milestones occur of $965 as an approximate average your ticket to any Employment Network after the individual is working at aboveoramount of monthly income where an or State Vocational Rehabilitation (VR) above substantial gainful activity (SGA), SSI check would be reduced to zero. agency that is willing to provide services. currently $740/month, but may occur However, the required income could be (Employment Networks have a similar before the individual stops receiving a higher, since the maximum SSI benefit right to decide to no longer provide you check from Social Security. The total for an individual is $530, requiring an services, and no longer accept your payments to the EN will be lower than income of $1150. ticket.) under the outcome payment system (section 411.535). Empl a ments under the outcom Months 1-60 Total payments SSI $176/month $10,560 SSDI $277/month $16,620
Employment Network pavmen Milestone Milestone Months Months 13-Months 25-Months 37-Months 49- Total 1 2 1-12 24 36 48 60 Payments SSI $300 $600 $57/mo. $141/mo. $150/mo. $158/mo. $167/mo. $8,976 SSDI $470 $940 $90/mo. $222/mo. $235/mo. $249/mo. $263/mo. $14,127
Note: Individuals receiving both SSI and SSDI fall under the payment schedule for SSDI recipients. Continued on page 17 PAGE 16 7 8 TASH HEwsrnmI, FEBRUARY 2001 INCREASING CONSUMER CONTROL
THE TICKET TO WORK: A TOOL need to be earning a significant wage. INTENDED TO INCREASE CON- Many individuals in supported employ- For more information, contact: SUMER CONTROL OVER EMPLOY- ment do not reach the wage levels MENT SUPPORTS required under the ticket. This is both John Butterworth Continued from page 16 good news and bad news. The ticket, if it David Hoff is successful as a program, may provide Institute for Community Inclusion/ Employment Networks do not get incentive to service providers to seek UAP paid, unless they find you a job that pays better jobs with higher wages and work Children's Hospital you a sufficient income so that you no hours. The bad news is the individual 300 Longwood Avenue longer receive a social security check. needs to clearly have the goal of reach- Boston, Massachusetts 02115 (617) 355-6506 (v) ing that level of work. (617) 355-6956 (TTY) An individual work plan (IWP) (or, in [email protected] the case of a State VR agency, an O The requirements for work under the individualized plan for employment ticket program appear to recognize that or [IPE]) which is agreeable to you, must it may take time for some individuals to be developed before you assign your work towards self-sufficiency, possibly Michael Callahan ticket to an Employment Network. with cycles of relapse and remission. 4101 Gautier-Van Cleave Road #102 While this may sound reasonable from Gautier, MS 39553 You and the Employment Network the ticket users perspective, if an indi- [email protected] share the responsibility for determining vidual is able to comply with only the Acknowledgements the content of the individual work plan. minimum requirements, it may be IWP. difficult for the Employment Network to This manuscript was supported, in part, justify the cost of services: by cooperative agreement # 90D0061, When you go and talk to an Employ- from the Administration on Develop- ment Network about possibly using their under the outcome system, the mental Disabilities, Administration for services, the EN must provide you with Employment Network will receive no Children and Families, U.S. Department a copy of its most recent annual report, payment until year five (unless an individual of Health and Human Services, and which lists specific information on the on SSDI has previously used up his/her trial grant # H133B980037 from the National results achieved with individuals in the work months) Institute on Disability and Rehabilita- ticket program, to help you decide if the tion Research, U.S. Department of Education. EN is the right one for you. under the milestone system, the Employment Network would receive only What are the concerns about the two payments prior to year five Ticket program? the Employment Network could potentially have the 60 months of payments Note: This is part 1 of a two-part O The biggest concern is that the ticket spread out over fourteen years from the time article. Part 2 will appear in the program does not by itself provide the EN first starts working with an indi- enough resources to cover the job search vidual. March issue of TASH Connections and job support needs for an individual and will include TASH's concerns with significant support needs. This 0 People with disabilities use work and recommendations regarding the means that the ticket may be most useful incentives such as Plans for Achieving Ticket to Work and Work Incentives Self-Support (PASS) or Impairment combined with another funding source Improvement Act Proposed Regula- such as funding from an MR/DD or Related Work Expenses (IRWE) that MH agency. Combining the ticket with help people with disabilities pay for tions. the funding from a VR agency is more items and services related to employ- complicated, since the VR agency ment. As a result of these work incen- functions like an employment network tives, part of an individual's income will and can take the ticket itself. not impact their social security check. The regulations do not appear to 0 Reassigning the Ticket (and thereby adequately address the impact of work having full control over the source of incentives on payments to the Employ- support services) may be more difficult ment Network, effectively increasing the if you are combining the Ticket with amount an individual would need to other funding sources to find work. earn before the Ticket would pay off for the employment network. 0 For the ticket to have value to an employment network, individuals do Continued on page 18
PAGE 17 TASH NEwsimm, FEBRUARY 2001 INCREASING CONSUMER CONTROL
THE TICKET TO WORK: A TOOL INTENDED TO INCREASE CON- SUMER CONTROL OVER EMPLOY- MENT SUPPORTS Continued from page 17 ARE YOU A UNIVERSITY PROFESSOR? TASH HAS A STUDENT MEMBERSHIP PROGRAM! RESOURCE LIST The program was developed through discussions with professors who wanted to encourage professional identity through student membership in a strong advocacy organization while assuring For further information on the Ticket to that their students had access to enough issues of JASH for them to be able to complete a variety of Work and Self-Sufficiency Program and journal article review and comparison exercises they assign. regulations, contact: The package works like this: Geoffrey Funk, Team Leader, Legisla- tive Implementation Team, Office of 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 Employment Support Programs, already low associate member rate. The discount amount increases as the number of students Social Security Administration, signing up increases. 6401 Security Boulevard. Baltimore, MD 21235-6401; Voice: (410) Regardless of how many students join, TASH provides a year's worth of back issues of the journal 965-9010; TTY: (800) 988-5906; Web to all students signing up under this plan. This means your students will start the semester with a site: www.ssa.gov/work 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 Text of the regulations: year in addition to an extra full year's worth of journals!
The Ticket to Work and Self-Suffi- An introduction to TASH is likely to be one of the most valued resources you can offer studentsas ciency Program: Proposed Rule; Part they enter the disability community in their professional capacities. To receive materialsor to learn 411 of Title 20 of the Code of Federal more about TASH's Student Membership Program, contact Rose Holsey, 410-828-8274, ext. 100 or e-mail: [email protected] Regulations [20 CFR Part 411]; Federal Register, December 29, 2000. Available on-line at:
Related publications available from the Institute for Community Inclusion Yearbook
PAGE 1B ;2 0 TASH NEWSIMER, FEBRUARY 2001 FEBRUARY 2001 Foundations for Freedom: International Perspectives on Self-Determination and Individualized Funding by Steve Dowson & Brian Salisbury
This enlightening report is based on the First international Conference on . Self-Determination and Individualized Funding, Seattle, 2000.
"The writer, Victor Hugo, said that when people dream together, they create a shared future.To Hugo, this meant far more than daydreaming. It meant grappling with the focusing on the concepts of self- challenges and injustices of life, to create a better tomorrow, determination and individualized a richer world of opportunity for all people. funding is now available! This has been the critical work of this conference, and it must continue to be the work we all do, each in our own These concepts continue to evolve and take on ways, long after we leave here. meaning for greater and greater numbers of The declaration we have just heard outlined must-guide people with disabilities and their families. our collective efforts.Like all declarations, it is a call to- Throughout this groudbreaking report - one return and recommit to first principles, the fundamental resounding principle rings true - no one but the principles of justice and equal opportunity. person with a disability (and for children, the child and his/her family) ceuld possibly know We must translate the language of self determination into what was best for that person. All over the world a far-more common and universally understood, language of human freedom, which I believe all people and most people with disabilities are seeking and acceptinggovernments throughout the world, not only understand, only those supports that provide what they want but actively seek to embrace. and need to realize their own futures. We need to recognize, and help everyday people and our This 88 page report is an in-depth look at the governments, recognize that this thing, that some call self determination, is not new. It is ancient. As ancient as the Declaration formed as part of this human will to live free." conference, and the implications it has for chang- ing the ways systems and communities support taken from Bob Williams' closing address, which followed the people with disabilities. The report was sent to all presentation of the Declaration. The full speech is included in who attended_ the conference. the report.
0 Yes, I would like to ordera copy for only $22.95 0 Family members of people with disabilities and self-advocates- discounted price $15.95 Name: Address: Number ordered: *Add 3.00 per copy shipping City/State/Zip or Postal code: and handling within U.S. Country: Xdd 6.00 per copy shipping Phone: Email: and handling outside the U.S. Payment must be in U.S. Funds OCheck endosed OMC OVISA °Discover Total Enclosed: Card # Expiration Date Signature For more information on volume discountscall 1-800-482-8274 ext. 0 or 410-828-8274 ext. 0 L Fax order to 410-828-6706 or mail to TASH 29 W. Susquehanna Ave. Suite 210, Baltimore, MD 21204 PAGE 19 TAU Brawn, FEBRUARY 2001 FEBRUARY 2001 Its NOT YOUR MOTWEIZ'S k TASH wishes to A acknowledge the STAFF DEVELOPAAENTI generous support ©LifeLines Paraeducator of our newest Trainer-of-Trainers lifetime member Why? Activity-based, NOT "sit-get- split & forget" staff development, Joanne Fuhrman Monmouth, Oregon small groups (less than 30!), individualized with networking Lifetime membership entitles you to full opportunities *Illinois CEUs available! international and chapter member benefits for your lifetime.The cost can be remitted over several monthly payments. What? 6 training modules, 3-day trainer-of-trainers delivered by If you are interested in becoming a lifetime member of TASH, contact Rose Holsey at authors of ©Life Lines, the most 410-828-8274, ext. 100. comprehensive paraeducator curriculum available
How? Visit website or call to register for Orlando, San Francisco, Prorim flevefonent ilicrodakr Chicago, Houston or hosting your Ideas, Training and Solutions or Today's Disability Professional own training in your district A FREE DISABILITY RESOURCE CATALOG Warning: This training can actually make a difference! Lists over 200 training items for staff development including. videos, CD- Visit our web site or call to learn more ROMS and books on advocacy, inclu- _ about our trainer-of-trainers work- sion, employment, transition, case shops, ordering materials, and hosting management, disability awareness, a TOT in your district. assistive technology and more. www.lrconsulting.com Write PDA Free Catalog, P.O. Box 2038, PMB 747 POB 6049 Syracuse, N.Y. 13220, call 800-543-2119, Katy, TX 77491-604 or visit us on the web at PH: 281-395-4978 www. disabilitytraining. com onsultingFax: 281-392-8379
PAGE 20 2 2 TASH NEWSLETTER, FEBRUARY 2001 FUTURE PLANNING
I work for one such group, the Vancouver, Canada-based Planned Lifetime Advocacy Network (PLAN). In 1989 a small group of 15 families, average age 70, came together to help each other answer the stark question, "What will happen to our sons and daughters with disabilities when we die?" They created an organization as a container for their worries, their dreams and their solutions. Little did they know they had stumbled into an area families and caregivers everywhere were strug- Securing gling with. The content of this article 1111111111111 has been distilled from PLAN's experi- the F001610 NOwith ence and direct contact with over 10,000 BY AL ETMANSKI families in the ensuing years.
From a general perspective, families For the first time in history, Thinking about the future is a natural report three lessons which emerge once individuals with disabilities are extension of being a parent regardless ofthey embark on the path of preparing for outliving their parents. Advances the age of our children. As one parent their own death and planning for the in medical technology, improved health in Australia recently commented, "I future well being of their relative with a care availability, higher social expecta- need a 'drop dead' plan." And, as we all disability. These are worth remembering as you read the 7-step overview pre- tions and community living have know,. although many of us prefer to sented here. ensured a longer life for our friends and ignore it, growing old is not a certainty family members with disabilities. In the for any of us. next decade close to 6 million families in 1. The most important consideration is North America will be caring for their As more and more individuals enjoy not how long you will live, but how well aging relatives with a disability. their senior years, pressure is exerted on you will live your life. In other words our systems and institutions to respond. exploring the dimensions of "a good My daughter, Liz, is a good example. This, in turn, has the benefit of raising life" is the key challenge. Before she was five years old, she had awareness on the importance of plan- had two life-saving operations that were ning for the future for our sons and 2. Planning for the future is the best not available five years previously. daughters with disabilities regardless of excuse for changing the present. Nowadays, individuals with Down their age (or our age, for that matter). syndrome are living on average into their 3. Wills, estate planning and trusts are 60s. Compare this with an average of 9 Creative Responses are Emerging mere utensils, not the meal. years of life in the 1920's and 30 years in the 1960's for individuals with Down Fortunately, families everywhere are syndrome. developing creative responses to what some people have described as "aging Respecting the choicesand The immensity of this fact is slowly anxiety." And the solutions are emerg- preferences of ourrelatives while creeping into our consciousness within ing from the age group one might expect at the same timeensuring their the disability community, and will soon - parents who, in their senior years, are safety can be atough balancing command the full attention of govern- forced to confront their own mortality. act. Legalguardianship has ment policy makers and even the These families, many of whom were always juggledautonomy corporate sector. This demographic leaders in the community-based disabil- respecting one choicesof individu- trend, however, simply underscores a als with disabilitieswith ity movement which emerged after result, unfortu- worry and anxiety that perches on the World War II, are not content just to protection. The nately, is usuallyover-protection. shoulders of parents the world over fromresolve their own future planning to change this the moment our children are born. However, efforts challenges. They are passionate about are underwayin many "What will happen to my son/daughter sharing their pioneering efforts with jurisdictions. with a disability if something should younger families. We will all benefit happen to me?" is a constant concern from their living legacy. confronting all parents at the best and Continued on page 22 worst of times. 4.3 PAGE 21 TASH NEwstErmi, FEBRUARY 2001 FUTURE PLANNING
Securing The Future for which restrict the vision. Instead we are well acquainted with the social and People with Disabilities ask, "What might a good life be?" health benefits of relationships. Sup- Continued from page 21 Those answers abound with eloquence portive social ties reduce the likelihood and often poetry. Emotional, spiritual of illness, aid the healing process, and social considerations take prece- improve our immune system and are the dence and services fade into a supple- most effective means for ensuring a good Seven Steps to Creating a Plan for the mental role. Answers to the "good life" and safe life for individuals with disabili- Future question invariably fall into the follow- ties. All other approaches are secondary. ing categories: Fifty per cent of North Americans die It should go without saying yet it bears without a will. Ninety per cent of the repeating: No disability precludes heads of family-run businesses die Our vision of a "good life" for our relative with a disability might include: relationship. Parents can often lose sight without a viable estate and succession of this. We have discovered that not plan. Clearly, thinking about our own a. Being surrounded by friends and only is it important for our family death, let alone preparing for it, is family members member to be in relationships with something most of us would prefer to b.Living in a place of one's own several people, but also it is equally avoid. The added dimension for families c. Contributing to one's community important to connect these people with who have relatives with disabilities is d. Having one's choices respected each other. Formalizing these connec- they must create a plan not just for their e.Enjoying financial security tions into a Personal Network or Circle own lifetime but also for the lifetime of of Support provides: their relative. Clarifying a vision for the future would Companionship The following seven steps represent the remain an artificial exercise unless one: Sharing of responsibility among key elements in creating a plan for the brothers, sisters, friends and supporters future. Each is important and will move Includes your family member with a Advocacy and monitoring of the you along the path. Taken together they disability in the process formal programs and services your represent a holistic and comprehensive relative receives approach to creating a safe and secure Shares the results with other members A potential source for executor and future and a good life. You will be able of the family and your son/daughter's trustees to create a checks and balance system personal network A vehicle for addressing your hopes that recognizes the best any of us can do and dreams is to be well prepared for the future, not Trusts in the possibilities for the future Continuity after you are gone attempt to predict it. for your relative Step Three: Step One: Is prepared for a few surprises Living in a Place of One's Own Clarifying and Sharing Your Vision Step Two: The value As the old saying observes, "If you don't Nurturing and Consolidating Relationships of home is know where you are going any road will universal. get you there." Families have definite Billie Holiday sang it best, "Without Our home dreams and yes, nightmares when they friends I ain't got nothin." To be is our think about the future of their loved isolated is an enormous tragedy and as haven, our ones. We have learned to use both our Mother Teresa observed, "a most terribleplace of love and our fears as motivating forces poverty." Loneliness may be the most refuge. It for clarifying our vision for the future. significant handicap experienced by our is where our authentic self emerges. The trick is to release them from our friends and family members with Home is where we can truly "be," silent consciousness and share them disabilities. This loneliness becomes offering hospitality, relishing privacy, with others who care about our relative even more disturbing when one contem- enjoying intimacy. Unfortunately, many with a disability. We often ask families plates the time when we are gone. people with disabilities live in houses to make two lists, one describing a that are essentially organized as places perfect day in the future, and the other It doesn't matter how much money we of work for staff; houses devoid of the describing their worst nightmare. leave in a special needs, discretionary little things that make a place a home. trust, or how well written our will is. Group homes for example, excel at We have also learned not to ask, "What Without friends our family member providing a place to eat, sleep and be program or service do you want for your could be cast adrift in a very impersonal son/daughter?" That question simply service delivery system after we are invites program and service answers gone. Readers of TASH Connections Continued on page 23
PAGE 22 TASK NEwsurrER, FEBRUARY 2001 FUTURE PLANNING
Securing The Future for some options for protecting your relative People with Disabilities against exploitation and to assist them in making housing-related decisions. Ensuring choices for individuals Continued fi-om page 22 with disabilities means creatinga process for supported or joint Step Four: decision making. When combined sheltered. Often they do not reflect the Making a Contribution with a Personal Network and relatedness of people, places and things. individualized funding, there is They do not nurture relationships Each of us has a deep longing to give, to greater likelihood their choices will among the people who live there, or help contribute, to offer and to share what is not only be heard but heeded. them understand their connection with meaningful to us. Unfortunately, this is nature or with the everyday things they often an experience denied to our friends use. and family members with a disability. There are at least two reasons for this which appeared in the November 2000 issue of the TASH newsletter. Getting from "house" to "home" can be tragic oversight: there is no recognition challenging for our friends and family they have something to contribute; and In general, families would be advised to members with a disability. One ap- they have little opportunity to make their proach is home ownership. The Na- contribution. examine supported decision making as an alternative to formal guardianship. tional Home of Your Own Alliance has Supported decision making provides a the best material on accomplishing this A good life, now and in the future, for way to respect the unique decision dream. There are, however, other means our daughters and sons with disabilities making style of each individual with a to create control over the housing means: disability and to provide support where environment in which your relative chooses to live. These include long-term Believing they have a gift necessary without depriving the indi- vidual of his/her legal decision making leasing, co-housing, housing equity Validating their gifts rights. coops, and land trusts. Assisting to develop their gifts Ensuring their gifts are given Supported decision making for our Contribution establishes the valued role relatives and friends with disabilities saeN. of citizen. The next leap forward for the means: disability community will be made from Regardless of the form of They are an active participant 11 the base of citizenship. Citizenship is tenure available to your about both rights and obligations and All methods of communication are relative, home control taken into consideration means: obligation is about contribution. People with disabilities are an underutilized Their tastes, preferences, intuition, ii Choosing where you want resource in our community and their motives and ability to discriminate are II to live; contribution, whether paid or unpaid, is respected Choosing with whom you an important source of "social capital" - Trusting relationships have as much will live; and the glue that holds our communities and weight as intellectual ability Choosing the staff who will neighborhoods together. The focus is on abilities support you. They are surrounded by caring, S Step Five: knowledgeable and trusting people who 1:1 Ensuring Choice are in a relationship with them tal Risks, failures and mistakes are Respecting the choices and preferences recognized as learning opportunities Creating a home cannot be done in of our relatives while at the same time Many families and friends are develop- isolation from the other steps discussed ensuring their safety can be a tough ing a Supported Decision Making here. Without the existence of a balancing act. Legal guardianship has Agreement which identifies individuals Personal Network, our sons and daugh- always juggled autonomy respecting who are available to assist with decision ters will be just as isolated in their own the choices of individuals with disabili- making in the areas of medical/health; place as anywhere else. Similarly, your ties with protection. The result, financial; and daily living. These will and trust agreement will formalize unfortunately, is usually over-protection. agreements are recognized legally in arrangements for housing tenure and Efforts to change this are underway in some jurisdictions and are having the maintenance. For example, a home maymany jurisdictions. These were well- force of moral authority in others. be owned by a trust. Step 5 provides described in Dohn Hoyle and Kathleen Harris's article, Re-thinking Guardianship, J Continued on page 24 PAGE 23 TASH Nomura, FEBRUARY 2001 FUTURE PLANNING
Securing The Future for the Personal Network. You can advise of the family People with Disabilities your trustees to seek advice from the Provide continuity Continued from page 23 Personal Network members before spending from a trust. Finally, you can Typically these organizations are instruct your trustees to check directly independent of the service delivery with your son or daughter before making Ensuring choices for individuals with system and independent of government any financial decisions. disabilities means creating a process for funding. This ensures their objectivity supported or joint decision making. and effectiveness as an advocate and Step Seven: When combined with a Personal monitor. These organizations are Securing your plans Network and individualized funding, family-controlled and directed and there is greater likelihood their choices become the eyes and ears, arms and legs If a family has followed the previous will not only be heard but heeded. of the parents after the parents are gone. steps they have: In many ways, these new groups are Step Six: revitalizing the family arm of the clarified their own thoughts for their Designing a will and estate plan disability movement. Families are relative with a disability and shared with discovering what they already knew others these hopes and dreams A will and estate plan is one of three together they are better. developed or formalized a network of potential sources of wealth for individu- support als with disabilities. The other two are Conclusion built a vision of home and contribu- the income they receive from work and tion the individualized funding they receive The good life paradigm represents a new developed a supported decision from the government. way of thinking and acting about the life making agreement we want for our loved ones with disabili- and created a will and estate plan. A will and estate plan is the means by ties. In a paradoxical but wonderful which parents can leave a share of their manner, a good life framework actually These plans by themselves will definitely wealth to their child with a disability. makes a difference now, not only for our ensure the safety and well being of your There are some critical considerations to relatives with disabilities but also for family member with a disability. Never- address, the two most important being: their parents. In that regard future theless, more and more families are planning is less about the future and going one step further. They are 1. Write a will. If you do not have a will, more about peace of mind, now! creating a new type of organization to the government will distribute your provide two main services: assets according to a formula they Al Etmanski is the Executive Director of devise. Similarly, they will determine the Planned Lifetime Advocacy Network 1. To assist families of all ages to who will care for your minor children (PLAN). He also serves on the faculty of develop their plans while the parents are and it may not be whom you want. John McKnight's Asset Based Commu- still alive nity Development Institute. He is the 2. Establish a 'special needs' or discretionary author of numerous articles and the 2. To monitor and safeguard these plans trust. These trusts enable individuals books, Safe and Secure- Creating a when the parents become incapacitated with disabilities to receive their share of Personal Future Plan For People with or die. the estate left on their behalf without Disabilities and A Good Life - For You jeopardizing the benefits they receive and your Relative with a Disability. Planned Lifetime Advocacy Network from the government. (PLAN) and similar organizations can Mr. Etmanski can be reached by e-mail be used by families to: The more friends and supporters your at
Michael is a ham. He loves when their parents die.I work for being the center of attention. PLAN (Planned Lifetime Advocacy These days he's a far cry from the Network). We support individuals abrupt, reticent, and withdrawn man of ten with disabilities and their families to years ago. If only his mother could see him take the trek to the future. Early on in now. Her faith in the power of relationships our work with Marie, Michael, and would not be misplaced. our other founding pioneers, we realized there would be no future, or at Tonight he is giving a workshop. The co- least not a future anyone wanted, if presenters and Michael meet beforehand. friends and family were not a part of The topic is 'Personal Networks - Weaving it. We also realized that the vast the Ties That Bind.' They agree on a majority of folks who were coming to format. Vickie will assume the role of a us were, like Michael, very isolated, television personality and interview Michael. You Can Count especially in terms of friendship. Michael is excited. A real television-style We determined that actively and interview. No detail is too small. It must be on Us strategically facilitating relationships authentic, for a man who is precise. It must BY VICKIE CAMMACK had to be a key element of preparing be Oprah, not Rosie. There must be a for the future. We also learned very microphone. There must be an elevated stage. quickly that of course, friendships are Everyone agrees. They go along with the aplomb. Next comes a more personal key elements of having a life in the illusion. question. present. In fact, many of the folks at the center of PLAN's personal Seventy-five are in attendance. There is a "Tell me, Michael, what does your network networks would equate getting a camera crew from the local community do for you?" "They give me hope, love and network with, in today's vernacular, college. The workshop is being taped for encouragement which I really need now that getting a life. distribution. my mother is dead and gone up to heaven." - You could hear a pin drop. It was mirth the At PLAN we like to focus on the The moment arrives and Vickie as Oprah wait. future by thinking about what consti- turns to ask Michael her first question. tutes a good life. Personal networks Michael's mother, Marie was a courier contribute to what virtually all us of "Hold everything," shouts Michael."Let's de bois. This is a French term for the would call a good life in five very get rid of these extra chairs." The chairs are early Canadian explorers who cut, compelling ways. Clearly, as Michael removed. punched and hacked trails through our states above, having a group of friends Then, nodding to the camera operator, he country's dense forests. In Marie's case and supporters provides the emotional asks if they have enough light. They do, but she was blazing a trail to the future. She support and encouragement that each thank him for asking. Michael, clearly, is the knew her health was declining. She of us needs. Personal networks also one in control. quickly cut through the details of wills, provide practical, hands-on assistance Next comes a sound check. You can never be estates, trusts and lawyers. She then with the tasks of daily living. Perhaps too sure! found herself alone on the precipice with less well known, however, is that Michael. There was a large summit personal networks play a crucial role Vickie tries again. By now the audience is ahead of them. She knew Michael in the health, the wealth and ulti- into the spirit of the occasion."Let's go, would be alone in the world without her. mately in the citizenship of people Rosie," they chant encouragingly. "No, no," It was at this point that she and Michael with disabilities in our communities. interrupts Michael. "Not Rosie but Oprah. decided to actively create a personal Oprah Winfrey." "Yes," says Vickie, "Oprah network or circle of support for Michael. The following paragraphs illustrate would like to ask you a question." The story at the beginning of this article how personal networks make a illustrates the discoveries of their final difference in each of these five areas "Wait a minute," says Michael forgiving her journey together. Marie has passed now and in the future. indiscretion, "You've got to start properly." away and Michael certainly misses her. "Lights, camera, action," announces Vickie, But as Michael says so poignantly, he Emotional Support clapping her hands to simulate take seven. has a network of people to give him 'And now, here's Michael." love, encouragement and support. This is probably the area most us of think of when it comes to friends and Everyone is finally satisfied, particularly Michael's comments begin to illustrate families. Most of us cannot imagine Mc-ihael. The interview can begin. He what personal networks mean for the handles the preliminary questions with people at the center of them, especially Continued on page 26 0P-9 PAGE 25 TAN Hamm FEBRUARY 2001 DEVELOPING PERSONAL NETWORKS
You Can Count on Us say, "My mother has died and I miss her.become ill. The old maxim holds true: a Continued from page 25 But with the help of my network I'm good friend is the medicine of life. doing o.k." Ensuring there are involved friends and loved ones is a crucial task for any life without our friends to share our joys Practical Assistance family worried about their relative's with when times are good and to lean on health in the future. when times are tough. PLAN's personal Most families in preparing for the future networks have been great sources of are acutely aware of the innumerable Wealth and Social Capital encouragement for the people at the things, small and large, they do on center of the networks. There is nothing behalf of their relative. These can range Planning for the future always involves like having a group of people who from filing income tax returns to buying some discussion about financial re- believe in you when it comes to gather- the best-fitting brand of underwear. It is sources. Certainly having adequate ing up the courage to take on a new often these personal details that families income is a critical element in anyone's challenge. Our networks have been are the most uncomfortable leaving to future. What we have discovered at bolsters for folks bracing themselves to individuals who are paid to support theirPLAN though, is that money alone can't start a new job, go back to school, or relative. Personal network members at buy happiness or success. Of course, we even to simply meet a new person. The PLAN provide a vast array of practical knew this when we began our work, but emotional support of network members support to their friends. initially the seductive power of finance has been the catalyst that has liberated had us thinking that wills and estates folks to see themselves as competent and Network members are the ones who were the most important things to be capable of achieving their dreams. notice if the coat is getting threadbare addressed in future planning. They and make a quick trip to the mall. They seemed so concrete and practical and, We also have seen our networks walk help write holiday cards, make sure the frankly, easy in comparison with the with people through traumas such as neighbors are happy, and that the intangible world of relationships. _ substance abuse, episodic mental illness doctor's instructions are followed. They Interestingly, the concept of social and personal loss. For example, when have even been known to clean the capital has recently emerged and it is George's mother became ill with cancer toaster and take the cat to the vet. In beginning to put value on the often his network knew he would need a lot ofshort, while we all know a personal difficult-to-measure assets of relation- support in preparing for her death. They network can never replace families, they ships. collaborated with George to create a are the next best thing. video of his mother's life. When she did Social capital is both the number of pass away this amazing group of men Staying Healthy relationships we have and the trust, and women adopted the motto 'never reciprocity, and shared values in those alone.' And, indeed, George was never One of the issues families are most relationships. Our supply of social alone for the first month after his concerned about in thinking about the capital directly impacts our choices and mother's passing. A few months after future is the health of their relative. opportunities. Research about social his mother's death George was able to Painstaking and important work is often capital is finding among other things, done by a family to make sure all the that when we have a good stock of it our details of medical treatment over the job prospects increase, our ability to years are documented and shared. learn is improved, and our safety is Clearly having a network member in the enhanced. know is critical to communicating with The contributions of the medical establishment to ensure the Alternatively, when individuals or people who have been best treatment is received. groups are found to be lacking in social labeled as disabled have never been more needed. capital their locus of control is dimin- Providing the opportunities There is, however, another often over- ished and clientele-ism increases. Social for these contributions to be looked role that personal networks play capital could be considered the most made by ensuring that a in safeguarding the health of the person important source of wealth a person personal network of friends is at the center. There is a burgeoning fieldwith a disability has. Creating a per- there to receive them is one of of research called pycho-neuro-immu- sonal network represents a strategic and the most profound legacies a nology. This field explores the mind- focused way for families and individuals future plan can create. body connection in health. The results to increase their social capital. of this research are conclusively pouring in. When we have a supportive social network we all live longer, get sick less
(- often and heal more rapidly if we do BEST Y AVA LE Continued on page 27 PAGE 26 TASH Navarro, FEBRUARY 2001 DEVELOPING PERSONAL NETWORKS
You Can Count on Us Continued from page 26 Living ASelf Detepmined Life Continued from page 14 Contribution Equals Citizenship
It is fair to say that the term citizenship advocacy or self advocates, we does not often come up when working wouldn't have self determination. I with families and individuals to plan for worry sometimes that profession- the future. Instead, they use phrases like als want people to gain self doing something meaningful, having a determination so bad, they forget reason to get up, being valued, and to include us in the self determina- making a contribution. When you think tion process. about it, aren't giving, contributing, and Someone once said a vocation is where making a difference all at the very heart our deep gladness and the world's deep A lot people without disabilities of citizenship? At PLAN we believe hunger meet. Surely most of us are will often say that self determina- contribution equals citizenship. hungry for meaning in our lives, sur- tion can only be achieved by the rounded as we are by today's culture of "chosen few." What I think they People with disabilities, along with other individualism and greed. The contribu- mean by that is that my friends and marginalized groups, have made tions of people who have been labeled as I can achieve self determination enormous strides in securing their rights disabled have never been more needed. because we have jobs in the in the past two decades. The battles Providing the opportunities for these community and we are "smart won, the laws passed, and the policies contributions to be made by ensuring enough" to handle our own lives. written have all been extremely impor- that a personal network of friends is However, people think that people tant on the road to citizenship. Perhaps there to receive them is one of the most who use wheelchairs or have for-peop-le with disabilities, they repre- profound legacies a future plan can "severe" disabilities can't ever gain sent the first half of the road. It is the create. self determination. other half of the path to citizenship not rights but obligations or contribu- For the people at the center of a per- I would argue this point because I tions that needs to be traveled now sonal network, contribution of their have seen people gaining self unique gifts equals the living of a life of determination for themselves. I Relationships are the ticket to the meaning. For the rest of us, the privilege have a friend who has a "severe" contribution side of the journey to of receiving these gifts equals an oppor- disability and he needs 24-hour -- citizenship. As seen above, social capitaltunity to become our most human. support. He lives in his own home. can certainly help to secure employment He also makes his own decisions if that is the main path to contribution. with support from his family and But there are many other unique and friends. crucial contributions that people with Vickie Cammack is a co-founder disabilities can make. of PLAN and the Executive I am really enjoying my life.I Director of PLAN Institute for believe without self determination Time and again network members tell us Citizenship and Disability. She I couldn't do as much as I am that their friendship with the person at developed and directs PLAN's doing today with my life.I also the center of the network contributes to Personal Network Program and believe that people are truly them seeing their own life as more assists communities internation- happier with their lives than they meaningful. They say things like, "Her ally in their efforts to develop were 40 or 50 years ago when they presence grounds me. It is a real gift similar organiztions. She is co- lived in institutions, or even 10 since I get so caught in the doings of author of "Safe and Secure- Six years ago when many lived in life." And, "He reminds me that we all Steps to Creating a Personal group homes where they were have needs for each other that we don't Future Plan for People wiih controlled by others. even realize." Network members use Disabilities." She can be reached words like inspiration, courage, and at [email protected] creativity when they are speaking about what they receive from their relation- ships with people with disabilities.
PAGE 27 TASH NEwnEran, FEBRUARY 2001 TASH NEWSLETTER
Policy Statement Priscilla Newton; Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- torial judgement in selection of materials. Doug Biklen, Chair Executive CommitteeBob Kafka All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary Ming-Gon John Lian, Ex-Officio ; use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Tia Nelis abilities. Terms such as the mentally retarded," "autistic children," and disabled Nancy Weiss, Executive Director Liz Obermayer individuals' refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Marcie Roth Terms such as "people with mental retardation," "children with autism, and "in- Linda Bambara, Ex-Officio Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- ment for a product or service does not imply TASH endorsement.For a Wanda Blanchett Richard Sobsey copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio Jacqueline Thousand 8274, ext. 102. June Downing Lucille Zeph I' r
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FEBRUARY 2001 PRINTED IN THEU.S.A. VOLUME 27 ISSUE NUMBER 3/4 MARCH/APRIL 2001
Equity, Quality and Social Justice for People with Disabilities
The Pathto ComMlinity'PaiiidiaiioT' Essential Lifestyle,Planning: Developing Partnerships between Researchers and Culturally Diverse Families Permanency Planning for Children with Developmental Disabilities The Convention on the Rights of the Child
EST COPY. AVAILABLE
31 MARCH/APRIL 2001
TABLE OF CONTENTS
TASH Board Nominations Page 2 From the Editor 828-8274, ext. 101, or you may Governmental Affairs UpdatePage 4 send an e-mail to 2001 Earlybird TASH Annual Conference The debacle that became [email protected]. Registration Form Page 5 2001 TASH Awards Page 6 the 2000 presidential A Recovering Behaviorist Pagel0 election notwithstanding,Nominations can be made by The Path to Community it is time once again to turn our mail, fax (410-828-6706) or e- Participation Page 13 attention to a selection process mail, and must be received by Families Planning Together Page 17 in which TASH members can Forging New Alliances Page 21 June 8th. Embracing Interdependence Page 27 have full faiththe election of Permanency Planning for Children with new members to the TASH Priscilla Newton Developmental Disabilities Page 31 Executive Board. Survivor Promotes Ideology of Exclusion Page 34 The Convention on the Rights of the Nominations to this year's slate Child Page 37 of candidates are encouraged. Members are also welcome to self-nominate. Nomination TASH (formerly The Association for guidelines, along with informa- Persons with Severe Handicaps) is an tion on the responsibilities of international advocacy association of serving on the TASH Executive people with disabilities, their family Board, may be obtained by members, other advocates and people contacting TASH's Executive who work in the disability field. Director, Nancy Weiss, at (410) TASH actively promotes the full in- clusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. WHOM DO I CONTACT?? 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) g. T 11 SI 828- TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible; For questions about the 2001 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: Jamie Ruppmann, Director of Advocating for opportunities and rights; Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: [email protected] Eradicating injustices and inequities; For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org
Supporting progressive legislation and The TASH Newsletter is available on audiocassette, in large print, and in Braille for people whose disabilities make these litigation; and, alternative formats preferable. Call (410) 828-8274 e:ct. 102 to request an alternative firmat Requests for permission to reprint material appearing in the TASH Newsletter should be sent to: TASH Ni,wsletter, 29 W Susquehanna Avenue. Suite 210, Promoting excellence in services. 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 o o TASH MARCH /APRIL 2001 GOVERNMENTAL AFFAIRS
TASH members are long-time advocates take into account the circumstances or for integrated employment, and should nature of an offense or an accused immediately write to Education Secre- student's history." tary Rod Paige asking for the release of The Final Rule for the State Voca- In taking this action, the ABA supported tional Rehabilitation Service Program the following principles concerning (34 CFR, Part 361). Letters should be school discipline: sent to: Schools should have strong policies Secretary Roderick R. Paige against gun possession, and be safe U.S. Department of Education places for students to learn and develop; 400 Maryland Avenue, SW Washington, D.C. 20202-0498 In cases involving alleged student misbehavior, school officials should exercise sound discretion that is consis- 0 0 tent with principles of due process and The General Accounting Office has considers the individual student and the The Extended Employment released a report to the U.S. Senate and particular circumstances of misconduct; Regulation finalized by the House of Representatives presenting the and Rehabilitative Services Adminis- results of their findings regarding the tration in January has been earmarked impact of the disciplinary provisions of Alternatives to expulsion or referral for "review" by the Bush Administration. The Individuals with Disabilities for prosecution should be developed that Education Act Amendments of 1997 will improve student behavior and TASH, in coalition with the Association (IDEA 97). They found special educa- school climate without making schools for Persons in Supported Employment tion students who are involved in serious dangerous. (APSE) and other progressive advocacy misconduct are "being disciplined in a organizations, strongly support the Rule generally similar manner to regular To read the resolution and the report on because it would, 1) limit Title I funding education students." Moreover, princi- Zero Tolerance, visit the American Bar for "extended employment" (sheltered pals reported that IDEA plays a limited Association's web site at workshops) to short-term training role in affecting schools' ability to www abanet. org activities leading to integrated employ- "properly discipline students," and that ment. and 2) clarify that the only accept- the combination of federal and local able employment outcomes for Title Iare policies governing special education had 0 0 0 in integrated settings-- settings that are a "positive or neutral effect on school "consistent with the individual's safety and orderliness." Help to promote the TASH values of strengths, resources, priorities. concerns. inclusion and quality of life for all people by abilities, capabilities, interests and Nonetheless, principals still maintain becoming an active member of the TASH informed choice." that "a separate discipline policy for Government Relations committee. For more special education students is unfair to information about the Committee's work, or Opponents of the Rule argue that it the regular student population." In to join the listserve, contact Jamie removes choice from individuals who addition, principals found the proce- Ruppmann, Director of Governmental wish to remain in sheltered workshops. dures for IDEA are burdening and time- Relations at (410) 828-8274, ext. 104 or send consuming. The full report, an e-mail to [email protected] TASH and APSE know that this Rule "Student Discipline: Individuals with will actually ensure choice for individuals Disabilities Education Act," is avail- whose job placement decisions havetoo able at http://www.gao.gov. Join the TA511--verementalrin often been made for them. based on their Affairs List5erve Tociayi disability rather than their abilities and personal interests. The American Bar Association has To sign up, go to TA511's site When individuals are provided custom- voted to oppose schools' "zero toler- at littp://www.egroups.com/ ized supports and employment that ance" disciplinary policies. The House subseribe/TA511GovAffairs addresses their interests and capabilities, of Delegates adopted the resolution the vast majority express satisfaction against current disciplinary policies in with, and preference for community jobs. public education because they "fail to
BEST COPY AVAILABLE. PAGES3 3 TASH Mom®, MARCH/APRIL 2001 GOVERNMENTAL AFFAIRS
The article, "The Ticket To Work: A Tool (3) Do the regulations meet the The purpose of the Milestone payment Intended to Increase Consumer Control over stated intent of the regulations by both System is to ensure that the Ticket Employment Supports," which appeared in eliminating and reducing cash payments benefits all beneficiaries, including those the February 2001 issue of TASH to SSI and SSDI recipients? with significant support needs such as Connections, provided a summary of the pre-employment costs related to career Ticket program, based on the proposed As proposed, the regulations which regulations published in December 2000. planning, job development, and initial are complex and difficult to understand on-the-job support. The milestone The following excerpts are from a letter for both beneficiaries and for Employ- payments proposed are both too small to submitted by TASH, under the auspices ment Networks do not pass the test address these concerns, and occur too of the TASH Employment Committee, to provided by these questions. The late in the employment process to meet William A. Halter, Acting Commissioner recommendations below reflect specific the needs of the small- and medium- of the Social Security Administration, concerns that individuals with the most sized organizations that have historically citing TASH's concerns that the proposed intensive support needs, individuals who achieved the highest level of success in regulations fall far short of meeting the are likely to be beneficiaries under the supporting difficult-to-serve individuals. requirements of individuals with the most SSI program, will receive tickets with the intensive support needs. lowest cash value. Recommendations: To obtain a complete copy of TASH's comments, contact Nancy Weiss at 410- Concerns and Recommendations Increase payments under the outcome 828 -8274, ext. 101, or [email protected] system to at least 38% of the average The program provides insufficient incentives monthly payments under both SSI and February 22, 2001 for the employment of individuals on SSI, SSDI. representing many individuals with the most Establish milestone payments earlier nonsistent with the mission of significant disabilities. in the employment process, recognizing ...... TASH, these comments focus on the intensive expenses incurred during the effectiveness for all individuals with Overall, the proposed value of the Ticketcareer planning and job development. disabilities who receive cash benefits for SSI recipients does not provide Simplify the payment structure by under the SSI and SSDI programs, with sufficient incentive for Employment providing the same level of reimburse- particular emphasis on the effectiveness Networks to serve SSI recipients and ment for each monthly outcome pay- of the regulations as a change agent for individuals with more significant ment. individuals with the most significant disabilities. Despite the lower payment Increase the level of early payments to disabilities. levels, individuals on SSI will typically Employment Networks by paying a need to reach higher levels of income higher percentage of the total 60-month Congress specified that a goal of the before an Employment Network can SSA savings in the milestone payments, [Ticket] legislation is to enable individu- receive a payment. and reducing the monthly outcome als with disabilities to "reduce their payments. dependence on cash benefit programs." Recommendations: While the proposed regulations establish The regulations need to clarify impact of a broad framework for implementation Establish demonstration projects that other Work Incentives on Ticket payment. of this legislation, their effectiveness in assess the impact of higher levels of expanding employment opportunities forpayment to Employment Networks for Existing work incentive programs, all individuals with disabilities must be SSI recipients. including PASS and Impairment Related measured against three fundamental Equalize the level of income that Work Expenses, have been a meaningful questions: triggers Ticket payments across the SSI tool for many individuals with disabili- and SSDI programs by using income at ties. While these work incentives have (1) Do the proposed regulations the SGA level for both programs. This not been used widely enough, the Ticket provide sufficient incentives to Employ- will also dramatically simplify the regulations should be clear about how ment Networks to be a meaningful tool regulations, making the program more they interact with outcome and mile- for individuals who have significant understandable for recipients and easier stone payments under the Ticket. disabilities and significant employment to manage for Employment Networks support needs? and the Program Manager. Recommendations:
(2) Are the proposed regulations The Milestone Payment system does not Clarify the impact of participating in sufficiently simple in their design to sufficiently address the upfront costs for the PASS and IRWE work incentives on make them easily understood by SSI and Employment Networks, particularly for the calculation of when outcome SSDI recipients, and to be easily admin- individuals with significant disabilities. payments begin. istered by Employment Networks and the Program Managers? Continued on page 25 PAGE 4 34 USNiiEWMEM4MARCH/APRIL 2001 Want to Learn New Things But Don't Have Time or the Budget to Attend A Conference?
\ TASH Teleconferences Are For You!
4A Upcoming Events
Series on Positive Behavior Supports in Schools
Functional Assessment - facilitated by Tim Knoster, Ed.D, Division of Applied Research & Education Support, Dept. of Child & Family Studies, University of South Florida
Designing Positive Behavioral Intervention - facilitated by Tim Knoster, Ed.D, Division of Applied Research & Education Support, Dept. of Child & Family Studies, University of South Florida
School-Wide Behavior Support Plans - facilitated by Rob Horner, Ph.D., Professor of Education at the University of Oregon, Director of the Specialized Training Program, Department Head of the Department of Special Education Community Resources Transition and Adult Issues
Post Secondary Education: A Choice for Everyone - Facilitated by Carol Tashie, M.Ed., Technical Assistance Coordinator, UNH, Institute on Disability UAP
Integrated Affordable Housing in Light of the Olmstead Decision - facilitated by Jay Klein, UNH Institute on Disability and Center for Housing and New Community Economics (CHANCE) and Mike Auberger, ADAPT and Center for Housing and New Community Economics (CHANCE)
The cost to participate is only $45 per telephone connection, per session. Information about dates, times and other details on these exciting teleconferences can be found at
TASH Awards il
It's time once again to submit 2001 Alice H. Hayden Award TASH Award Applications! This $500.00 cash award will be presented to a This year at the annual conference, in doctoral student enrolled in a program in education or addition to the Alice Hayden and Thomas a related field and who demonstrates potential for Haring Awards, TASH will confer a special leadership in teaching, scholarship, and service on series of awards around the theme of this year's behalf of people with significant disabilities. The TASH conference. These awards will honor the individual needs to have demonstrated a continuing groundbreaking and exemplary work of individuals desire in working in partnership with people with and companies to create and promote positive _ disabilities. images of people with disabilities. Image Award recipients will be honored at a special Showcase of 2001 Positive Images Awards Images Reception on Thursday evening, November 15th. This award honors presentations in print, film or other form of media, which promote the positive images of To nominate an advertisement, commercial, television people with significant disabilities in all aspects of show, movie, publication, artist, or any medium you community life. Criteria for selection include: high think has met the criteria listed here and has made quality, accuracy of information, meaningfulness of significant impact on the positive images of people subject matter, degree of impact, and promotion of with disabilities, send full details regarding the positive images of people with disabilities. nomination, including name(s) of the company or individual; complete contact information; and specific details of the work for which the individual or com- 2001 Thomas G. Haring Award pany is being nominated (include a sample or copy for Research where possible). This $1000 cash award is presented to promote This is your chance to honor such accomplishments research and scholarly activity in the field of significant with official recognition. Please take the time to disabilities. The award will be presented to the submit an application,Awards will be conferred as author(s) of a study of particular significance that was part of the TASH Annual Conference to be held in published in JASH within the two years prior to the Anaheim, November 14-17, 2001 Award applications annual conference. The study will have demon- will be accepted through July 1, 2001. Please be strated scientific merit, and have made an important sure to indicate for which award you are applying on contribution to the disability field. the application, and submit all required documents or information requested for that award. NOTE: Other awards may be announced by individual committees.
BEST COPY AVAILABLE PACE 0 3 6 TASHIIIIII1E1118,MARCH/APRIL 2001 2001 TASH AWARDS 2001 TASH Award Application - Applications due July 1, 2001 -
Person or Team Being Nominated:
How to Apply: Name of the Individual: (1) Complete this application form front and back- as fully as possible. Street Address: City: (2) Attach a brief narrative discussing why the nomination is being made. Please see the other side of this form for a State/Province: Country: list of supporting information and materials that must be submitted for the particular award you choose below Zip/Postal Code:
3) Please indicate for which award you are applying. CheckDaytime Telephone: ( ) only one award. Evening Telephone: ( ) Alice H. Hayden Award Is this individual(s) a member of TASH? Yes No Positive Images Award Name of team members (more room on reverse The Thomas G. Haring Award for Research side) (4) To be considered, the original completed application and supporting materials must be received in the TASH Street Address: central office no later than July 1, 2001. Send to: City: Awards Committee State/Province: Country: TASH 29 West Susquehanna Avenue Zip/Postal Code: Suite 210 Daytime Telephone: Baltimore, MD 21204 Evening Telephone: (_)
Is this individual(s) a member of TASH? Yes 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:
3 7 PAGE 7 TAN Ilarsimm, MARCH/APRIL 2001 2001 TASK AWARDS
Please provide as much information as possible Media Contacts about the persons who are part of this team. Please provide on a separate sheet of paper, thenames Please use additional paper if necessary. and addresses of local radio, television, ornewspaper outlets that would be interested in covering the tation of the award. presen- Name of Team Member: Award Application Requirements Organization (if applicable): Alice H. Hayden Award: Street Address: 1. Attach a curriculum vitae outliningyour history of: a) higher education (including major, minor, degree, date City: of completion); b) employment (including dates, duties, State/Province: Country: name of supervisor); c) research and publications. 2. Also attach 500-1000 word essay which describes: Zip/Postal Code: a) your current work on behalf of individuals with severe disabilities; b) your educational and professional Daytime Telephone: ( ) objectives. 3. Attach at least three (3) letters which support the Evening Telephone: ( ) nomination. These letters should be from professors who are familiar with your qualifications. The letters Is this individual(s) a member of TASH? should present specific data or anecdotal information Yes No which convey an accurate picture ofyour current achievements and potential for significant contributions *** to the field. Name of Team Member: Positive Images Award: 1. Please provide a brief description of the project, includ- Organization (if applicable): ing the medium used (ie: radio, television, newspdper, magazine). Street Address: 2. If the nomination is in the film category, please indi- City: cate the length of the video in minutes. 3. Attach at least one copy of the nominee's work,or of State/Province: Country: the specific project being nominated. If the nomination is in the print category, the submission must beneat and Zip/Postal Code: legible. If thenomination is in the film category,a video copy (VHS 1/2") must accompariy the nomination. The Daytime Telephone: (___) submitted work must be sufficient to demonstrate that Evening Telephone: ( ) the work meets or exceeds the criteria for the award. Thomas G. Haring Award for Research: Is this individual(s) a member of TASH? 1. To be eligible for the award, the authors' manuscript Yes No must have been published in JASH within the two year *** period prior to the conference. The senior authormust agree to be present at the upcoming conference, and to Name of Team Member: present the contents of the paper as a conference session. 2. To make a nomination, submit a letter which references Organization (if applicable): the article, and addresses_the study's significance, scien- tific merit, and the importance of its contributionto the Street Address: disability field. City: State/Province: Country: Permission to show video submittals: Zip/Postal Code: If the nomination is in the film category, please complete and sign the following to hereby grant permission to TASH to show: Daytime Telephone: ( ) (Title) Evening Telephone: ( ) for, but not restricted to, promotion of the TASH Media Awards and the TASH Annual Conference. Similarly, as it applies to the Is this individual(s) a member of TASH? promotion of the TASH Awards and the TASH Conference, the Yes No producers waive any monetary compensation. *** Signature:
PAGE 8 3 5 TASHNEVEMMARCH/APRIL 2001 SUPPORT THE WORK OF TASH
ovirriN--r TFER's work is dependenton the TAN: The Action Starts Nero financial support of our members. We wish to acknowledge thegenerous While it's true that the acronym TASK doesn't really =SWIM= of our newest lifetime stand for "The Action Starts Here," TASH members members know that it is TASK'S clarity of vision and willing- ness to take action that distinguishes us from many other groups. BritttinireRew York. flY Throughout our now 26-year history, TASH has led Lise Fox - Tampa, FL the way to assure that: Judith Jellison- /Tustin. TX the rights of people with disabilities are Kathleen 1t. Masterson- El Corado Tills. CFI protected; Susan Yuan- Burlington. VT progressive research is assured the support and audience it deserves; and, Lifetime membership entitles you to full international and chapter individual and legislative advocacy is member benefits for your lifetime. The cost can be remittedover several monthly payments. tt) available whenever needed. We need your help to support and sustain the If you are interested in becoming a lifetime member of TASH, critically important work that TASH has begun. please contact Rose Holsey at 410-828-8274, ext. 100. Please consider a contribution or a plan for giving that will secure the future of TASH's daily action toward progressive supports and inclusive lives for all people with disabilities.
Gifts may be made by check or credit card. All Thanks. too, to the many individuals and gifts -- regardless of the amountwill be greatly appreciated. No amount is too small. organizations that have graciously donated to our aorta Do also consider: /Issumption Parish School Board Contributions of stocks or securities Betty Buchanan Remembering TASH through your will or living trust Michael Callahan Beneficiary designations of life insuranceor Stephanie F. Campo pension plan proceeds BET Systems. 3nc. Gifts with retained income for you or others Lynn Donald William Dussault Charitable gifts are tax deductible. To discussyour options for making a donation to TASH,or to Lynette Fowler request a copy of TASH's Charitable Giving j. Bradley Gzurner brochure, please contact Nancy Weiss at 410 -828- Craig Kennedy 8274 ext. 101. Mom Krass Mark E. Masterson Thank you for your assistance in securing the rights of all people to live and participate Mitchell &lam Reiburger successfully in the community! Kandacen.Penner Roberta F. 5elmorr Cynthia Spicer Toward Maximum independence. Unc. di\k-41\9WTIa( Cheryl Whiting-Wright
PACES 39 USN NEwsims, MARCH /APRIL 2001 POSITIVE APPROACHES
unnatural, control- behaviors toward a younger woman who ling environments sat near her workstation. Grace's that couldn't be parents, afraid that their daughter's sustained. A true placement would be jeopardized if the believer, I had behavior continued, agreed to the written behavior services of a behavior specialist. programs to stop people from drinking In the behavior intervention plan that too much coffee, to was developed, Grace's parents would Recovering eliminate rocking, to be called if there was an aggression "or control aggression the threat of an aggression," and they and to minimize would come to the program and pick her Behaviorist hugging. I was up. At home, her parents were to restrict BY JIM McFALLS leaving all of that her from a favored activity that evening behind and Herb saw as a punishment. Clearly, the behavior that and helped me specialist's filter for Grace was a behav- along the way. ioral one with a heavy emphasis on consequences. Such "slash and burn" Probably the most fundamental insight I behavior plans are too common, and came to was that behavior intervention have been about as helpful to behavioral "They just looked at him, smiling. And is at least as much an art as it is a ecology as slash and burn land use has slowly, Harry looked into the faces of the scientific endeavor. The more I had been to the physical environment. The other people in the mirror, and saw other studied and utilized the science of first step the behaviorist took was to pairs of green eyes like his, other noses like applied behavior analysis and the more I control and punish instead of doing a his, even a little old man who looked as was considered skilled at what I did by functional assessment. No one talked to though he had Harry's knobbly knees - Harry the people who used my help, the more I Grace or even did a cursory review of was looking at his family, for the first time in felt and acted like I was an artist. how the environment might have his life. Although I use a broad variety of data contributed to the behavior. collection strategies, tools, assessments The Potters smiled and waved at Harry and and evaluations, it is what I do with all he stared hungrily back at them, his hands of those data that is the artistic part of pressed flat against the glass as though he was I encourage a planning process that me. I have to transform these data into hoping to fall right through it and reach places the person being served at its something that is really useful and them. He had a powerful kind of ache inside heart. "Person-centered planning," creates understanding. of him, half joy, half terrible sadness." "Essential lifestyles Planning," and "Personal futures Planning" all focus Everyone has "filters" that they use to J.K. Rowling, Harry Potter and on what the person needs rather process and understand the perceptions the Sorcerer's Stone than what the system needs. they receive from their senses. The filters that I have developed include the When you're using this perceptual "positive approaches" and "general Herb Lovett once told me that I filter, you don't talk about placing systems" types. When I look at a was a "recovering behaviorist." the person in o group home with "behavior problem" I begin thinking of He meant it as a compliment, people they don't know, or in a day questions that have to do with the and I have treasured that conversation program making widgets, or on goals environment the person is engaged in, over the years. I was struggling to find a that have no meaning to them. what forces are impacting on the person, way to help people with developmental who the other people in the person's life disabilities and their families deal not Instead, planning starts and ends are and so on instead of the frequency, only with challenging behaviors but also with the person being served. This intensity and duration of the behavior with the system that was supposed to be puts great strains on the service and how can I decrease them. supporting them. The behavioral system because it is individualistic. paradigm was what I had been taught That is exactly how it should be. Grace, a forty-year-old woman labeled and used for years as my way of facilitat- with mild mental retardation, has ing behavior change. Now, it wasn't worked in a day program doing packag- working for me. I was restricting people ing and sorting tasks since she graduated and punishing people and people weren't from high school. She began refusing to really changing. I was helping to set up work and started displaying aggressive Continued on page 11 PAGE 10 40 TAO iloyams, MARCH/AMR 2001 POSITIVE APPROACHES
A *covering Behaviorist younger woman had been teasing her ing to begin discussing other goals and Continued from page 10 during breaks and lunch. The family to explore what they had to do to begin wished their daughter could have been placement for Grace in a group home. challenged more at work, but thought This scenario happens hundreds, If they had looked at Grace through a the professionals knew better. When the perhaps thousands of times every day in different perceptual filter, different restrictive program was proposed they group homes, day programs and in questions would have come to mind were horrified that, if they didn't go families. The addiction to consequence- other than, "how can we stop her along, their daughter would be out of a based, punishment-oriented behavioral job. aggressive behaviors?" Questions such treatment in the developmental disabili- as, "Why would Grace begin such ties service system is potent and has a lot dramatic behaviors after eighteen years In the end, Grace did not need a behav- to say about our system's need for without a problem? Why did Grace ior plan. But how had things gone so control and power over the very people single out one specific person? What far? The "noncompliance" and "aggres- we are supposed to be serving. does Grace have to say about this? And sion" turned out to be messages that we what is Grace gaining by doing this, weren't tuned in to. Grace's parents To combat this addiction I encourage a what's the reinforcement in it?" trusted that the staff was acting in their planning process that places the person daughter's best interest. The staff being served at its heart. "Person- These are just a few of the hundreds of centered planning," Essential Lifestyles questions that should be a part of a planning," and "Personal Futures useful functional assessment. I see the planning" all focus on what the person process as similar to putting together a needs rather than what the system needs. 2,000-piece puzzle that has no borders SinceI am a recovering When you're using this perceptual filter and is missing some key pieces. I look behaviorist, I continue to ask for you don't talk about placing the person for subtle coloration as well as distinc- data to be collected, and I use in a group home with people they don't tive prominences in the answers, and some of the behavioral jargon like know or in a day program making also what's not there that should be. I "reinforcer," "redirection," and widgets or on goals that have no mean- keep trying to build up clumps of "antecedents." But I don't use ing to them. Instead, planning starts and success and understanding, knowing them in the same way as I did ends with the person being served, the there is a picture of the behavior in there before. My behavior support plans consumer. This puts great strains on the somewhere. I just have to find it. are aimed at building, strengthen- service system because it is individualis- ing, teaching, and interacting tic. That is exactly how it should be. There are a lot of people who don't see rather than restricting, the value in the time it takes to do this. I controlling, and punishing. Terrence was a mess. He had moved just strongly feel that if we presume to one month ago from his family home of disrupt a person's life like happened in thirty-five years into a beautiful, brand- this situation with Grace, there is no new group home and a new day pro- issue too trivial and no question too gram run by a well-respected provider. meaningless for us to explore. Even Marisa, his mother, had been extremely though it can get frustrating and the abandoned their knowledge of Grace reluctant to agree to the placement but puzzle parts aren't fitting, or every piece and their long-term relationships with after many years of Terrence physically starts to look the same, we have to keep her in favor of the "science" of behav- abusing her, and her husband and family looking. We cannot make the pieces fit ioral treatment. The behaviorist focused doctor advocating for it, she agreed. through force or begin guessing what we solely on the target behavior data and think the picture looks like or, even how to reduce it. Reinforcement was It didn't take long before things began to worse, give up putting the puzzle totally left out of the plan. Knowledge unravel. Terrance was placed in a group together. of Grace and the uniqueness she home with four other men and, all of a brought to the situation was not even sudden, he was faced with adjusting to When we did spend the time to do a considered. them as well as the two staff on duty. He functional assessment with Grace, her had been used to free reign at home but family and the program staff, we found Person-centered planning was begun andnow found that there were rules about out that she was bored with the work sheGrace asked for, and received, a promo- using the refrigerator, drinking the juice had been doing for the last eighteen tion to the customer-service section of and soda, how long he could spend in years, that she disliked younger "kids" the day program where she folded the bathroom and a host of other things. coming into the workshop and doing the clothes and waited on people. Grace and her parents also started going to counsel- same job she was doing, and that the Continued on page 12 4 1 PAGE 11 TANNENIMB,MARCH/APRIL EMI POSITIVE APPROACHES
A *covering Behaviorist integrating them into a unified plan. you that you did a lousy job raising him. Continued from page 11 Terrence was caught in the crossfire. I suggested including her in activities in the house instead of being hostile and Staff were angry at Terrence's mother argumentative. because of her overinvolvement at the He had to get up early, take his shower workshop and group home (which they At the day program I worked with staff the night before, do his laundry on interpreted as lack of trust) and because to build some flexibility into the pro- Tuesday and Saturday and... she obviously hadn't raised him correctlygram by allowing Terrence to come into (or he wouldn't be doing all of these a more familiar part of the program if he Terrence's behaviors became unpredict- terrible things). felt the need. Because he was having able. Sometimes he would yell and problems with less supervision than he curse, sometimes he would barricade Terrence's mother was angry with had been used to and was undergoing a himself in his room, and sometimes he staff because she felt ignored and lot of stress in his life, they agreed. We walked out of the house without devalued by them, and believed that theyalso found a way to have his supervisor permission. On several occasions he had lied to her about how wonderful the give him more targeted one-to-one smeared feces on the bathroom walls group home would be. attention on a regular basis. This also and mirrors. At the same time he was made the mother feel that the day also having problems at the new day There needed to be some period of program staff were trying harder, program where he did maintenance and transition, adjustment and accommoda- decreasing her anxiety. cleaning. Although he had been success- tion for EVERYONE, not just Terrence. ful in his training for this job, now he Expectations were exceedingly high that I requested of everyone that they was spending long periods of time in the there would be no problems and this was consider what we had learned in our men's room, picking food out of the unrealistic. meetings and to allow six months for all cafeteria trashcans, and responding of the changes and the transition to take angrily to redirections by his supervisors. My interventions, which are still in hold. During that six months they would His mother was frantic. She felt that the process, are aimed at bringing everyone see some of the behaviors disappear, group home staff disliked her and were together to refocus on Terrence as the some would become less intense, some treating her son disrespectfully and that reason we have our jobs. His needs, and would stabilize, and some behaviors they the day program staff were lying; her his success, are what we are all working would come to accept just because they son would never eat out of a trashcan! for. I asked the team to talk about would know Terrence better. Her response was to take him home as difficult transitions in their own lives and much as she could and spend long hours what would have helped them move Since I am still a recovering behaviorist I at the group home making sure staff through it better, then shifted the continue to ask for data to be collected were treating him properly. conversation back to Terrence to help and I use some of the behavioral jargon them understand what he might be like "reinforcer" and "redirection" and I received a request from the provider going through. The consensus so far has "antecedents" but I don't use them in the asking for a plan to get Terrence's been, "back off!" To ask instead of tell, same way I did before. My behavior behaviors under control. I quickly met request instead of demand, and find support plans are aimed at building, with the mother (the father did not want ways to praise instead of criticize are all strengthening, teaching, and interacting to be involved), the group home staff ideas the group came up with to support rather than restricting and controlling and managers, the day program staff Terrence. and punishing. Thank you, Herb, and managers, and Terrence. wherever you are. Reviewing the information I had My meetings with staff have emphasized collected throughmy positive ap- that, in order to help Terrence adjust, (}1mMcFalls is a licensed psychologist proaches and systems filters, I knew this they need to spend some time getting to and the Director of Adult Services at wouldn't be resolved by writing a typical know him and for him to get to know Ken-Crest Services in Plymouth Meeting, behavior plan for Terrence. Several them. They should include him in PA. He is a member and past co-chair of pieces of information were evident: planning what will happen around the TASH's Positive Approaches Committee. house so that he has input and commit- Dr. McFalls may be contacted at (610) Terrence was going through life ment and will be more likely to be 825-9360 or by e-mail at changes that would be difficult for cooperative. Learning about him will [email protected] almost anyone to navigate without show his mother that he is with people symptoms of stress. who like him and she'll begin to trust staff more. I asked them to think about The people in Terrence's life were what it must be like to present your child making decisions for him without fAS to anonymous people and have them tep2 PAGE 12 TASK NBIS1MER,MARCH /APRIL 2001 COMMUNITY PARTICIPATION
opportunities and challenges would they encounter?
The community I chose was a village of 14,000 located in a mostly rural Mid- western county. That is where I met Katrina and that is the context in which I was invited into her home. I learned that Katrina and her husband had first gotten the diagnosis of cerebral palsy when Erica was six months old. Soon after, doctors found evidence of heart problems, leading to heart surgery on her first birthday. The heart problems and Girls Clubs of America, Girls were corrected, but the cerebral palsy led Incorporated, Camp Fire, and 4-H-- to motor problems and severe delays in touch the lives of 30 million young speech and communication. people per year (National Collaboration for Youth, 1990). These organizations Erica speaks maybe 10 words. Her en I was in Girl Scouts, family has tried to teach her sign there were no kids like Erica. offer arenas where children and adoles- cents with disabilities might find language. She can do basic signs like And I just didn't know if she "eat," "more," "baby," "drink", could be part of it." It was 9:30 in the avenues for friendship, the development of skills, self-expression, and having fun "hungry," "please." For `bathroom," morning. Katrina, nine-year-old Erica's Erica grabs herself. It is difficultfor her mother, had put her on the school bus, in a group setting. Since the 1970s, these organizations have revised their to her fingers in the correct positiOn taken her three-year-old to the church- to sign the word "bathroom." operated preschool, and fed her one-year- guidelines to endorse the concept of inclusionin contrast to the separate old and put him back down for a nap. I Katrina had been in high school when was sitting in Katrina's living room, programming and "handicapped units" that most of them encouraged in earlier she got pregnant. Now she was a having contacted her in connection with registered nurse, having gone back to my research on the participation of times. A publication such as Focus on Ability/Serving Girls with Special school when she was nineteen. What children with disabilities in out-of-school motivated her to get the degree? "To tell activities such as scouting, team sports, 4-Needs (Carroll, 1990, Girl Scouts of the USA) illustrates this evolution. But the you the truth, I wanted to know what they H clubs, and recreation centers. I knew were saying about my child..-.the nurses and from a prior telephone call that Erica did promulgation of new guidelines and the development of informational resources the physician would always be yapping back not participate in any of these activities. and forth." I wanted to learn more about her at the national level in no way assures that inclusive practices take root at the situation, to identify the barriers that FEARS ABOUT COMMUNITY keep some parents from involving their local level where actual programs and services are delivered. PARTICIPATION children labeled with moderate to severe disabilities in activities that are standard Currently Erica was attending a self- fare for many children without disabili- COMMUNITY CASE STUDY contained special education classroom. ties in their neighborhoods. In selecting a community in which to in the local public schools. Besides attending school,_she joined the family YOUTH PROGRAMSTHE BIG PICTURE investigate the out-of-school experiences of children with disabilities, I searched on outings to the municipal swimming for one that wasn't a college or univer- pool and played with her siblings and- The 15 largest national youth develop- the next-door neighbors' children. She ment agencies -- among which are sity town, that didn't have a therapeutic recreation department, and that was not was not having any peer-oriented, group YMCA, YWCA, Boy Scouts of experiences common to other kids her America, Girl Scouts of the USA, Boys particularly affluent. When children with disabilities and their families had age during the out-of-school hours. the same choices as everyone else and When the school sent home information when resources and specialized exper- inviting parents to sign up their daugh- ' Portions of this article were adapted from tise were in short supply, would they ters for Girl Scouts, Katrina gave it some Making a Place for Kids with Disabilities find the doors to community participa- thought and even wrote a note about it (Fink, 2000). Names in the book and in this tion open? And if they found open article have been fictionalized to protect doors and pushed through them, what anonymity. Continued on page 14
PAGE 13 TASK Ilarsunn,MARCH/APRIL 2001 COMMUNITY PARTICIPATION
THE PATH TO COMMUNITY related to Katrina's anxieties about what accentuated her developmental differ- PARTICIPATION level of functioning, competence, and ences was the way she interacted with Continued from page 13 independence her daughter would attain people. She used physical touch as her far into the future. way of getting and keeping the attention of a peer or adult. I saw her try different It was not my role to help Katrina approaches, from full frontal hugging, to to the paraprofessional that worked with resolve these larger issues. But because Itaking a hair band off another girl's head Erica during the school day. But that's had already met with leaders of the localand putting it on her own, to strongly as far as she got. Katrina acknowledged Girl Scouts, I was able to reassure her ontaking hold of both hands of another that the thought of putting Erica into a one point. "If you sign Erica up for Girl person (adult or child), and pulling on Girl Scout troop led to a host of other Scouts," I told her, "she does not have to them. questions that she had not yet resolved attend without you. All parents are for herself. welcome to attend the troop meetings." THE PARENT'S CHANGING ROLE A few months later and as a direct "I don't want someone to make fun of outgrowth of our discussion, Katrina When Katrina first began bringing Erica her....My husband has a 10-year-old brother; enrolled Erica in one of the local to Brownies, she remained with the he's not around much but when he is around Brownie troops. group the entire time, sometimes sitting hen he will make fun of her. She flaps her right with Erica, sometimes watching arms at times, and he'll flap his arms." ERICA JOINS A BROWNIE TROOP from a nearby table. Just as she had told me in that first interview, she wanted to "Erica loves to do things away from us, not Although Erica was old enough to be in make sure she was comfortable with the just with the three kids and us. I know it a Junior Girl Scout troop, Katrina leaders, and confident the other girls would be good for her to be with other decided in consultation with the troop would be accepting toward her daughter. kids...but you hear so much about camp leader and a During the color guard ceremony, counselors abusing children. I don't know if regional which included the Girl Scout Promise 7 could control myself if something like that volunteer and Pledge of Allegiance, Katrina happened. My husband says, 'think about "troop helped her daughter stand in the right when we get older, we're not going to be with consultant" to place, but didn't worry about the fact her everywhere she goes.' But I can't let put her in a that Erica held up the wrong hand. myse f think about that." Brownie During a circle game, Katrina joined in, troop. They and tried (without much success) to get "When my husband was younger, he was all agreed she Erica to run around the circle on her kind of an overseer for a group home, for kids would have a own, when she was tagged. During a from about age 18 to 25. And...they had better chance "secret code" activity that Erica did not people coming in and talking about sex. I of meaningful seem to comprehend, Katrina helped mean actually telling them how to do it....I participation with girls who were in first her use her pencil to draw some letters just don't see her as cognitively being able to and second grade than with typical peers and pictures. deal with that kind of information.... There of her chronological age. The troop was-one girl in this group home that got Erica joined had as its leader Francine, a After the first few meetings, Katrina pregnant. And she wanted to get pregnant. I special education teacher and mother of began leaving for part of the time and just don't know if I can ever accept that!" one of the troop members. Weekly returning before the meeting-ended. meetings were held in the cavernous One week the troop members were How many moms or dads of nine-year- Fellowship Hall of a local church. invited to accompany their leaders to a old girls without disabilities bring such a theatrical production on a Friday complex web of concerns to a decision Erica's demeanor at the meetings was evening at a high school in a nearby city about whether to sign up a child for a friendly, open, and smiling. She had For the first time, Katrina let Erica scout troop? For Katrina, thinking curly, close cropped, blondish hair and participate without her. It went fine. about her daughter's participation in a rosy cheeks. Her weight was in propor- From that point on, Katrina began community activity with typically tion to her height; she looked about the walking her daughter into the foyer developing peers was an exercise right size among a group of mostly outside the Fellowship Hall and saying charged with emotion. It raised con- seven year olds. good-bye like the other parents. cerns about how other children would respond and fears about adult leaders Katrina had described her daughter to who might be insensitive or even me as having a stiff "Russian soldier" abusive. These worries in turn were walk. This was noticeable, but what Continued on page 15
PAGE 14 44 TASK IIIIMMER, MARCH/APRIL 2681 COMMUNITY PARTMMATION
THE PATH TO COMMUNITY that Erica and I had established with our PARTICIPATION balloon play. Dale Borman Fink is an independent Continued from page 14 IT TAKES A BOOK TO DESCRIBE A scholar, conference speaker and author VILLAGE living in Williamstown, MA. At times his sister, Laurel, who has Down Syndrome, This article offers a brief glimpse into has joined him at the podium. the early months of one child's inclusive MOMENTS OF GENUINE INCLU- experiences as well as depicting the path Dr. Fink's publications include School-Age SION that brought her there. Over the course Children with Special Needs: What Do of a year, I interviewed the families of They Do When School Is Out?, Toward Still, Erica's participation was not New Strategies for Inclusion; and Making 19 children with disabilities in the case a Place fir Kids with Disabilities. comparable to that of her peers. Much study community and followed a dozen Questions or comments about this article of the time, she took little notice of the of the youngsters into their community my be sent to the author via e-mail at matters on which their attention was activities. I also interviewed the Pro non Oeuefrnenfolcrocithi. The University of Washington Ideas, Training and Solutions or Today's Disability Professional Graduate Program A FREE DISABILITY trains teachers to serve the needs of pre-K RESOURCE CATALOG through secondary pupils with significant disabilities. Emphasis on databased, system- Lists over 200 training items for staff atic instruction referenced to the requirements of natural school and community settings. _development including videos, CD- ROMS and books on advocacy, inclu- M.Ed. degree plus initial teacher certification sion, employment, transition, case possible. management, disability awareness, assistive technology and more. For additional information, contact Dr. Felix Billingsley, Area of Special Education. 102 Write PDA Free Catalog, P.O. Box 2038, Miller Hall, Box 353600, University of Syracuse, N.Y. 13220, call 800-543-2119, Washington, Seattle, WA 98195, (206) 543- or visit us on the web at 1827 or send an e-mail to www. disabilitytraining. corn [email protected] INVEST IN THE FUTURE!! Use your end-of-year funds to invest in your staff's future. What better way to spend funds available to you now! For the first time, TASH is making available books of coupons that-can be used for registration to any TASH conference in the next three years: Use coupons this year or bank for the future while locking in at this year's deeply discounted rates. Use for current staff, future staff or anyone you would like to support to attend the conference. Use coupons to save over 30% off current member registration rates. To redeem a coupon, simply attach it to a completed registration form for any TASH conference, now through 2003! The more you buy, the more you save! Price at Price for _ Savings This Year's Coupon Book Per Registration Member Rate Off this year's rates Book of 5 Coupons $1,195 $1000 $39 Book of 10 Coupons $2,390 $1,900 $49 Book of 15 Coupons $3,585 $2,700 $59 Book of 20 Coupons $4,780 $3,400 $69 Book of 25 Coupons $5,975 $4,000 $79 Note: Because this is a members-only benefit, the organization (or the individual attending) needs to be a member at the time of the conference for which the coupons are used. Want to assure your membership now? Go to http: / /wwwtash.org /membership /organiza- tion/ to purchase coupons or to sign up for a 2, 3 or 4 year organizational membership. Or, you can call 1-800-482-8274, ext. "0"to purchase a membership or coupons by phone. If your organization is a current member and you sign up for a multi-year membership, we will extend your membership for the number of years selected. For more information call Rose Holsey 410-828-8274, ext. 100 or e-mail Rose at [email protected] PAGE 16 46 TASH NBISLEIMI, MARCH/APRIL 2001 ESSENTIAL MISFILE HAMM learning how to help other families arrie is a young woman who is develop plans. described by those who like nd admire her as a helpful, Some of what is needed is still under hard worker, with great stamina. Not development. We know that many too long ago she was also seen (by the Families planning families are beyond the physical reach staff of the agency that supported her of the seminars that we have started. during the day) as someone who was together We have a few family mentors in difficult to employ and who needed a Pennsylvania, Missouri, and Texas; we behavior program. will need many more. We especially need to develop ways to help families Karrie's mother, Bonnie, is like many BY MICHAEL W. SMULL, from a distance, using the World Wide parents we have met. She didn't agree MARY LOU BOURNE, Web, and other distance learning with the agency staff. The Karrie that AMANDA GEORGE, techniques. However, what we have she knows and loves is someone that AND SHELLEY been able to accomplish is working. needs to have people who support her What follows will tell you more about know how to approach her. Any job DUMAS those aspects. that she has must take into account who Karrie is and what she likes and Seminars introducing people to the dislikes. process and beginning to develop a plan Through a process called "Families Have easy ways to continue to learn In Families Planning Together (FPT), Planning Together," Bonnie was able to and reflect that learning in what is gather what she and others who love families learn a structured way of written Karrie have learned about Karrie over gathering and organizing what the the years. Bonnie was not only able to person they are planning with has told Know how to use the resulting plans develop a detailed plan that describes them (and others). They are shown a to accomplish their goals Karrie but also a one-page description of step-by-step process that will enable what should be present or absent in any them to develop an "essential lifestyle job that Karrie does. Bonnie says, "ThisMeeting the needs with Families plan" with their family member. After plan gives Karrie authority; it changes the Planning Together attending either a one-day session or three evening sessions (6 hours total), way people are required to do things with In order to help families in meeting these families know how to use the Families Karrie. We have found that some providers needs, our group has developed: are able and willing to do things the way Planning Together manual to develop a plan with their family member. They Karrie needs, others still just want Karrie to 4 A "Families Planning Together" conform to the way they do things." manual complete with sample plans that have made a good start in developing a are posted on the web plan and know how to get on-going People labeled with severe disabilities, Families planning together Gathering information hand-write their plan. For families that Continued from page 17 After thinking through what they hope are interested in writing their plan on a to accomplish, families start stage two, computer, a template is provided at the information gathering. The first person seminar. The template was developed in to gather information from is their Microsoft Word, and it provides an easy family member. Families learn how to way to create a plan that can later be being led by people trained as trainers in ask questions without built in answers updated and changed as needed. essential lifestyle planning but will be ledand questions that don't lead the person. by family mentors as they get the The second part of information gather- Implementation: using the plan and experience needed to feel comfortable ing is "learning from others." Families ongoing learning and competent. learn not only who to talk to but who to When families have developed a plan that is good enough to get things Using the workbook in the seminar, started, it is critical that they continue to families are encouraged to think about work on the plan. Plans that are used planning as occurring in four stages: When Bonnie started gathering informa- tion for Karrie's plan, she says, At first must change with the person. As the I was overwhelmed. How am I ever person changes, as learning occurs, and 1. Think before you plan as people's understanding of the person 2. Gather information going to be able to do this? Then I realized, just a little bit at a time." grows, each plan needs to reflect the 3. Develop a first plan new information and any changes to the 4. Ongoing learning existing information. The manual describes a number of ways to record Think before you plan listen to. They listen to (and record) the new learning and keep the plan up to Families are asked what they want the answers to questions like what do you date. plan to accomplish, what they want to like the most \ admire the most about learn, who needs to be involved and their family member. Some of the Shelley has updated Katherine's plat:\ above all how to make sure the process people families talk to include: family over a dozen times in the three years she is respectful to their son or daughter. members themselves, extended family has been using it. One of the ways that Families consider these questions in and friends, others who know and care she continues to gather information is to relationship to what the actual purpose about the person, and people who have have the communication section of the of the plan will be. Bonnie stresses that been paid to support the person. People plan travel with Katherine, in the she developed a plan with Karrie have collected information in many backpack on her wheelchair. When those because (in part), "All of this information ways, including phone conversations, e- who support Katherine see her telling us was inside of the people who love and care mail messages, face-to-face interviews, something new with her behavior, they about Karrie. No one else knew this - we and having information-gathering write it down. needed to get it written down." Some of the parties. most common reasons families have for J developing plans are: Writing a first plan Family Mentors Although the seminar walks the families A family mentor helps other families to have a place where it is all written through the process, most of the writing develop plans with their family mem- down -- the "just in case" plan is done at home. Families write at their bers. They help people learn and own pace, using all of the source understand. They guide, connect and to help others get to know the information they have gathered. They encourage. While they need to be person better. It t is used by the people organize the information into three knowledgeable and enthusiastic about who provide support. primary sections: developing plans, mentors are not responsible for developing the plan and to help with a life transition from 1. What do others like and admire about do not direct its development. Being a school to work, or from the family home the person mentor requires being comfortable in a to a home of one's own. 2. What is important to the person role of helping and encouraging rather 3. What others need to know or do to than doing or directing. A mentor also to figure out what is important to support the person (which includes what needs to be comfortable with what they the person and what types of support is important for the person such as issuesdo not know and able to help people make sense, then use the information to related to health and safety). create supports and recruit providers of services. In the manual, families are given a blank plan format, which they can use to Continued on page 19 BEST COPY AVAILABLE PAGE 18 43 TAO Nfl mm, WINCH /APRIL 2001 ESSENTIAL LIFESTYLE PLANNING Families planning together "helped us plan for the details that would Continued from page 18 Kathy, who is a family mentor in minimize the risks for Missy. When we Missouri, says she loves supporting knew how to pay attention to the details, other families to learn about their sons we were all much more comfortable with and daughters and then seeing it make planning around the idea of Missy living a positive impact on their lives. As she in her own place with a friend. Even as connect with those who do know. We has helped families with the planning quickly as it all occurred, we felt better are finding that it is easier for families to process, she has seen the "light bulbs" go prepared." fill this role than it is for professionals. on for many families that have been struggling to figure out how to better Creating positive pressure for change support their children. We want self-determination to be available for everyone. Making that (BOnniefound that "writing a planwith*4 happen not only requires that people the help of other families really improves are also seeing if mentors can be paid for have control over their resources but also your confidence. I don't think a lot of their time and/or their expenses by the knowledge. They need to know whether families would go through with this if states. Under some Medicaid waivers, what is being offered will address what is they didn't have other family members paying one family to help another with important to them. They need to know encouraging them." planning appears possible. what has been done in other places, not N. J just what is on the local menu. This Some mentors just want to help one knowledge creates positive pressure for A family mentornot only helps families family at a time while others are inter- develop plans but also helps them in change. It is another piece of what is ested in working with larger numbers. required for the system to change. keeping the plans alive. Mentors discuss Some are only interested in helping with Often, families have great ideas about the ongoing support that the family the planning and others are interested in how supports can be arranged, but the thinks they may need and how that helping with implementation and system resists the changes needed to support can be obtained. Bonnie has advocacy. Once mentors have demon- make it happen. decided to continue as the facilitator of By putting these ideas strated the basic skills of supporting into a plan, families can apply that Karrie's plan, using it for updates and other families with planning whatever pressure. Tracy, a service coordinator reviews. For another family it made role they want is one that we will said, "Families are the best advocates for more sense for a service coordinator to support. But this is still new for us and continue updating the plan. The service their family member; staff or profession- we have a great deal of learning left to als may overlook important details in coordinator was able to use the plan to do in learning how to recruit and what is important to someone or how negotiate with her service provider to support family mentors. best to support someone...families make decrease the number of days the family sure the details are there." Ten families member pays for daytime support. This Missy's sister, Donna, pointed out that (or self-advocates), armed with the money is then used by the family from her perspective as a sister and a knowledge and confidence that comes member to purchase other supports. daughter, it was very helpful "watching from developing their own plans, are my parents go through the details step more effective than 100 support coordi- Being a family mentor is not for every- by step. It was the process that helped nators in advocating for change. one. It not only requires the characteris- them accept the whole idea of Missy tics listed but it takes time and energy. living on her own. Having the mentor While we have been describing how Those who would like to be mentors first (available) made us feel very comfort- have to work on the plan with their families can learn to plan we want to able talking about sensitive and private emphasize that the same process works family member long enough for it to be topics. My parents didn't get that feeling for many self-advocates. Where people considered a good plan. Then they have before." Many family members report the opportunity to spend time learning can develop their own plans they should that when talking about something be supported in doing so. We are how to conduct the seminar, how to different from what was already present, working on making this easier and more review the plans the others write, and conversations with professionals always available, however, it is beyond the scope learn some exercises that can help with seemed to focus on the many things that things like building connections or of this article. When you listen to the could go wrong, as if nothing could be stories that families tell the importance finding a new place to live. This learn- done to prevent risks. As a result, many of our current efforts are clear. Their ing can be spread out so that it fits with families have been reluctant to try stories are more powerful than anything busy schedules but it does take time. anything out of the ordinary. Missy's that we could say. What follows are just While they are learning we encourage family, with the support of a mentor a few of the many stories that we have them to start mentoring one family at a found that Families Planning Together heard. time and get support while doing it. We Continued on page 20 BEST COPY AVAILABLE PACE 18 /19 TASK MINWIEB,MATCH /APRIL 2001 ESSENTIAL LFES1YLE NANNING Families planning together She wanted to develop her own line days are spent doing more of the things she Continued from page 19 of purses. Brittany created a purse in enjoys doing as an adult. And one of the most her Family and Consumer Sciences powerful outcomes of listening to her is that class. we are supporting Katherine to develop her career as a teacher/ trainer. She's taught Levi and Carol Brittany wants to be a model. Her workshops in Texas, Florida, and later this After developing Levi's plan, Carol says, teacher is producing a Breakfast Bar year, in Arkansas. She's taught teachers, "...I always noticed that if I talked or wrote commercial and Brittany will star in it. support staff, and service coordinators. She's about a problem Levi was having, I found Elaine says, "Brittany is giving the best taught them how to listen to behaviors as ways to solve the problem without too much smiles in the world these days when she comes communication, and she's taught them how help from anyone else. As I was gathering home from school." to think differently about people they support. information and writing his plan it helped She's teaching person-centered thinking. She's me focus on what the problem was, what Katherine and Shelley changing systems. caused it and how to go about making things `Although Katherine had a person-centered better for Levi." plan since she was sixteen, it was really a Although her trainings allow Katherine to be plan that reflected what her dad and I wantedKatherine, to do the things she likes to do, Brittany and Elaine for her, not what she wanted, because, after and to interact with different people at each Elaine developed an Essential Lifestyle all, she was a person with "the most signifi- training site, she is developing new skills. Plan with her daughter, Brittany, about cant support needs." She could not tell us She's learning to press the button on the three years ago. This year, Brittany what she wanted and we had accepted her computer to change the presentation slides. started high school and her teacher has fate of having to settle for less than most other Her co-trainer (whom she helped hire) says, been very interested in making sure all people would want and expect in their lives. `When I look at Katherine presenting her students get to know Brittany. Since communication training, I see a person happy Brittany doesn't use words to communi- Because Katherine, her Dad and I had some at work.'" cate, her teacher uses her plan as a way experience in planning, she was asked to to help others get to know her. Her volunteer to help some professional staff from our local service agency learn a newer way of While the opinions expressed are solely teacher has shared Brittany's ELP with those of the authors, we wish to ac- planning, Essential Lifestyle Planning. Brittany's friends, especially, her likes, knowledge the support of: dislikes, her dreams and her communica- Katherine and I went to the training where tion chart. Some really neat things have Katherine was the focus person for develop- Karrie's, Justine's, Levi's, Missy's; Logan's, happened. For instance, one day, ment of a plan by a facilitator/ trainer Brittany's and Katherine's families, whose Brittany had nine freshman boys lined stories we have been privileged to hear and up along the hall serenading her before At the end of the two-day training, Katherine to share; The Pennsylvania Department of lunch. It was all because they found out left the building her same self, having had a Public Welfare, Office of Mental Retarda- her favorite groups were N'Sync and wonderful time. I left the building with a load tion through the Consumer and Family of chart papers and a brain transplant. I Self-determination Steering Committee and Back Street Boys.Brittany's teacher is Contract Consultants, Inc.; Missouri stared at Katherine for at least two days, and also helping her do things that are Department of Mental Health, Division of important to her and to realize some of kept apologizing to her for years of not MR/DD; Texas Center for Disability her dreams which are listed in Brittany's listening to her. Encouraged by my husband Studies, University of Texas; and Allen, plan. For example: to get a grip' on myself, I entered all we had Shea, and Associates. learned into an Essential Lifestyle Planning Brittany wanted to join a club and format on my computer, still amazed to see For more information about the Families help others. She belongs to the FCLA such new truths as `Katherine is a teacher..a Planning Together process, contact (Future Consumer Leaders of America) food critic...a Zen master... and, characteris- Michael Smull at tics of people who should support her' PAGE 20 TASK Nam= MARCH/APHIL 2001 FANGIO NEW ALLIANCES respect, and equal participation in all decision making. THE PARTNERS The Beach Center on Families and Disability The Beach Center is a Rehabilitation Research and Training Center (RRTC) that has been funded since 1988 by NIDRR's Rehabilitation Research and Training Center Program All of its research, training, technical assistance, and dissemination activities focus on family and policy issues related to disability, and its major commitment has The Evolution of an Unlikely always been to conduct research and training that will make a significant and Partnership Between Researchers and sustainable difference in the lives of Culturally Diverse Families: Lessons families who have a member with a Learned disability by influencing individuals with disabilities and their families, service providers, researchers, and BY BETSY SANTELLi, The University of Kansas, policymakers. URSULA MARKEY and AGNES JOHNSON, Grassroots Consortium on Disabilities, and The Beach Center does not provide RUD TURNBULL and ANN TURNBULL, The University of direct service to families on a day in day Kansas out basis but; rather, the Center tries to make a difference in the lives of families research as one of their many academic by: Historically, partnerships between requirements and expectations. Univer- large, well-established organiza- sities reward their published research OOOOO tions in the dominant culture with promotions and tenure. And more This partnership will provide a and smaller, newly developing, commu- often than not, and sometimes with just model for collaboration between nity-based efforts on behalf of un/ cause, culturally and linguistically sophisticated, highly developed underserved families have been beset diverse families believe that researchers research entities and families all with challenges stemming from cultural come to their community, conduct their across the nation in the interest differences, varying priorities, and a lack research, and then leave all without of improving the quality of life for of trust (ICritek,1994).Kritek (1994) creating any direct and immediate all children and adults with describes how cultural discrimination benefit to the families. disabilities everywhere. The results in people attempting to negotiate promise is that participatory at an uneven table one to which un/ How then does a partnership develop action research (PAR) teams underserved families and representatives between a national coalition of parent- composedof researchers and of veteran organizations, such as directed community-based family culturally and linguistically university-based researchers, come, support and information programs diverse families will discover ostensibly with equal power but actually serving culturally and linguistically new relationship that broadens with highly disparate power. Parent- diverse families who have children with the scope of their commitment to directors of community-based family disabilities and a well-funded research research as a means of social support centers operate within the and training center? The Grassroots change and contributes to a context of un/under-funded community Consortium on Disabilities and the deeper understanding of the settings and provide support and Beach Center on Families and Disability critical role research plays in information to families with multiple at The University of Kansas were well finding practical solutions for challenges. Their efforts often go un- aware of the potential pitfalls as we families. noticed and unrewarded. Researchers embarked on a mission to establish a often operate within the context of well- partnership built on a foundation of an funded university settings, and conduct enhanced mutual understanding, trust, Continued on page 22 PAGE 21 TAU ilassmi, MANCIVAPIIIL 2001 FORGING NEW ALLIANCES The Evolution of An through nonjudgmental, ongoing, one- on meeting the needs of un/underserved Unlikely Partnership: to-one technical assistance delivered by families affected by disability issues, the Lessons Learned parents who reside in the home commu- research, training, and dissemination nities, and sponsoring parent leadership activities conducted by the Beach Center Continued from page 21 and community development. will face unnecessary difficulties in being relevant and appropriate for families represented by the Grassroots Consor- providing families with research- If research does not include culturally tium on Disabilities. And, without the based information that leads to resources diverse families, will its results be professional expertise in research and skills for meeting their needs, and relevant to culturally diverse families? methodology and the national visibility And if these families are not involved of the Beach Center, the best practices the motivation to use those data, in the research activities, how will the resources, and skills for their benefit for meeting the needs of un/ investigators know what questions the underserved families currently being families want answered, what prod- helping to change policy and ucts to develop, what training meth- implemented by the Grassroots Consor- practice so that the families' context ods to use, and what languages to tium on Disabilities may not be awarded responds to their needs and efforts publish in? the credibility among the research and service delivery communities that these The Grassroots Consortium on Disabilities practices deserve. Our partnership enhances the capacity of each of our The Grassroots Consortium on Disabili- All of the Grassroots Consortium's organizations to fulfill our mutual ties is a national coalition of commu- programs have been developed and mission to make a positive difference nity-based, parent-directed, family administered by culturally diverse in the lives of individuals with disabili- support and information programs parents of child/en and adults with ties and their families. Our shared serving culturally and linguistically disabilities who operate their programs mission forms the foundation of our diverse families who have children with on a shoe-string budget and who strive _partnership. disabilities and other special needs and for the greatest possible personalization who are living in traditionally and responsiveness to underserved Our shared belief in participatory action underserved communities. These are minority families. Most of the programs research (PAR) and our commitment to communities that have become isolated have at most 2 or 3 part-time staff, and be fully participatory as a partnership is due to racism, discrimination, cultural many of the programs operate out of thethe indispensable means through which and language differences, and/or parent director's home with access to a we have been working and will continue because they are located in distressed single computer and one telephone/fax to work. Our use of PAR has helped to -urban or remote rural areas. line. Yet, despite few tangible resources, ensure that the 14 programs have, over the past six The services are individualized, flexible, years alone, served over 150,000 families (a) the Grassroots Consortium and comprehensive and often include in over 50 communities; they have on Disabilities programs have had assistance with meeting basic life needs received Presidential, other national, andopportunities to expand their skills in the related to poverty along with the state-regional awards; their members use of research and its results to directly disability-related needs. Each program serve on a host of state-regional disabil- benefit the families served;-and serves and represents traditionally and ity policy-making entities; and the historically un/underserved individuals families served by the Consortium's (b) the Beach Center has with special needs and their families, programs report high levels of satisfac- increased its multicultural competence tion with the services. including families-who are African- and is conducting research that is more American, Asian, Hispanic, Native relevant, meaningful, and immediately American, and European in their racial The Beach Center On Families and beneficial to underserved families. or national background, and/or who are Disability and the Grassroots Consor- migrant workers. tium on Disabilities - unlikely research EVOLUTION OF THE partners? Yes. Successful research PARTNERSHIP While each of the programs is unique in partners? Yes. Still learning about each Initial Outreach how it supports families, activities that other and our research partnership and are common to all of them include equally committed to its continuing The Beach Center staff member who outreach, informing parents about the evolution? Most definitely! Why? serves as its liaison to parent groups educational and legal rights of their Because without the personal and nationally has for the last 12 years children with disabilities, helping professional wisdom of members of the Grassroots Consortium on Disabilities families to meet their basic needs Continued on page 23 PAGE 22 52 TASK &num MARCH /APRIL 2001 FORGING NEW ALLIANCES The Evolution of An and asked challenging questions and Unlikely Partnership: shared candid observations about the These frank discussions were the first activities of federally sponsored researchreal stepping stones of our evolving Lessons Learned centers (including, the Beach Center). partnership. The level of candor that Continued from page 22 framed our discussions was possible If research does not include cultur- because of the ground work laid during ally diverse families, will its results be the earlier phase of the partnership. A relevant to culturally diverse families? sufficient comfort level allowed us to go regularly attended national conferences beyond the usual polite discussions that of parent organizations such as the Since most of the families being are often a part of early relationships. Parent Training and Information served by their programs are dealing The parent leaders felt comfortable Centers and Parent-to-Parent. Generally with incredible poverty, health, lan- enough to put their cards on the table at each of these national conferences, guage, and cultural issues, will a center's and the Beach Center liaison felt there is at least one session on multi- products be useful? comfortable enough to understand that cultural issues. Attending these sessions not all of their anger was directed at the afforded the Beach Center liaison with If researchers do not involve Beach Center and to accept their honest opportunities to learn more about the families in their activities, will the critique. needs of and best practices for serving investigators know what questions the culturally and linguistically diverse families want answered, what products Expanding the Partnership families. A consistent Beach Center to develop, what training methods to Over the next year, the Beach Center presence at these sessions also increased use, and what languages to publish in? continued to connect in a variety of our own visibility with the parent leaders ways with the members of the directing parent support programs - The Beach Center response was to really Grassroots Consortium on Disabilities serving traditionally underserved listen, hear them out, recognize our own to demonstrate our commitment. families. When the program directors of shortcomings, and pledge our interest in Through a series of quarterly mailings to multicultural parent support and strengthening our own efforts and each Grassioots program, we shared information programs were able to have, supporting theirs. additional information-and resources. A for the first time, a retreat of their own, series of conference calls (hosted by the the Beach Center liaison offered to Later in the meeting, the parent-directorsBeach Center) and visits by Grassroots attend to (a) learn more about these decided to establish themselves as the program directors to the Beach Center multicultural parent support and Grassroots Cons6rtium on Disabilities (paid for by the Beach Center), allowed information programs, their families, believing that as a national coalition us to identify the challenges and possible their best practices, and their issues and they could be more effective than as benefits of working together. We agreed challenges; (b) continue to build relation- simply directors of individual commu- to give it a try. ships with the directors of these pro- nity-based programs. A group discus- grams; and (c) to enhance their aware- sion about ways to enhance their Our First Joint Activity ness of the resources of the Beach fundraising and organizational capacity Since the Grassroots Consortium on Center those developed out of our generated many ideas. As the ideas Disabilities was working hard to estab- research and those we have because we surfaced, the parent-directors had an lish itself as a national presence, its are a national resource with national opportunity to hear how the Beach program directors were particularly visibility and many national connec- Center might be able to help their ideas interested in (a) documentation of tions. The offer was accepted. become reality. They began to under- Grassroots success stories, (b) validation stand some of the relevant strengths of of Grassroots strategies, and (c) funding Parent-directors of more than a dozen the Beach Center. multicultural family support programs attended the retreat. Figure 1: Partnership Strengths They came eager to share resources and mutual support. Beach Center Strengths Grassroots Consortium on Disability Strengths The Beach Center liaison had an opportunity to learn about Knowledge about resexch Knowledge abzut undeserved fanilies the many strengths of these programs and their parent Miami visibility/ccnneeions annections to underserved fatties leaders. The parent-directors however, were cautious about Rich in majority alit= resourcesfinancial, agzi2aticnal, Rich in minority culture resoutres cularal awara ess. sensitivity, the Beach Center's presence, crofessicnal training at dibility with farrifies Continued on page 24 PAGE 235 3 TAU NEWSWIER, MARCH /APRIL 21111 FORBIN NEW AWAKSES The Evolution of An mailing, members of the Grassroots Unlikely Partnership: Consortium on Disabilities had more Lessons Learned reason to believe that the Beach Center Continued from page 23 had not just dropped in "for a touch of color." Figure 2 Challenges and Benefits of the Partnership 3. Planning specific activities to undertake together brought to the Challenges Benefits surface issues that might otherwise have Establishing trust among partners with little experience Relevant research for all families with each other remained submerged. These issues Framing partnership to meet the needs of two very Methodologies are scientifically rigorous and could then be dealt with as they arose. different organizations that share a common comfortable for families The early grantwriting adventure helped mission, but have significantly differing levels of us to understand more clearly our resources available to them to carry out their respective contexts, as well as our own activities differing paces for addressing issues and Time to get to know one another, to allow for Increases researchers' access to families as taking action. differing paces and competing demands of the participants and participatory action research partners: for mutual education that allows for (PAR) team members informed and democratic decision-making 4. We committed ourselves to Funding to equalize disparate resources and to Increases families' access to research-based results open an honest dialogue about our PAR support ongoing communication among all and products that reach families in more process and its promises and pitfalls. partners meaningful ways Designing fundable, rigorous, immediately Mutual learning opportunities 5. We recognized and affirmed beneficial research the strengths and perspectives that Minimal support for the partnership from Enhances capacity of both partners to accomplish team member brings to the table, and respective systems their similar missions developed roles that take full advantage of these diverse contributions. to support its efforts. The Beach Center_ culturally diverse communities who shared its interest in enhancing its own feared a loss of autonomy for the 6. We worked to understand the cultural competence and for involving Grassroots Consortium on Disabilities. contexts and realities of each of the culturally and linguistically diverse Despite these reservations, our commit- partners, and recognize that our progress families in all phases of its research. ment to maintain and expand our as a team may be slower as a result of Given these identified needs, we agreed, partnership grew. as a first project, to partner on the these realities. submission of a grant to NIDRR in the Ongoing Partnership Activities 7. We allowed each partner time area of dissemination of research to Over the last five years, we have engaged to involve all of its members fully in underserved families. in many more joint activities- activities discussions about our partnership so that that have, in turn, been of primary decisions were made with full participa- The process of writing this grant benefit to Grassroots or to the Beach tion and information. involved one 3-day face-to-face meeting Center, but all of which have had at the Beach Center with the Beach common and mutual benefits. With each 8. We recognized that not all Center funding the travel expenses of the shared activity, our partnership is parent-leaders; multiple conference calls, activities can equally benefit both strengthened, and our resolve to con- partners all the time. and shared responsibilities for prepara- tinue to work as partners is deepened. tion of the grant itself. While the grant 9. We identified a leadership team was not funded, through this process we LESSONS LEARNED AND for each organization and a single point learned a great deal about each other SUGGESTED BEST PRACTICES and our working environments, and how of contact for each organization. The leadership teams hold conference calls important a shared, intense, time- 1. We created opportunities for and/or face-to-face meetings to revisit sensitive activity is to strengthening a sharing family and professional stories our shared vision, define critical issues, partnership. We were living our partner- and getting to know one another as determine priorities, and outline action ship and no longer just talking about it. people. We also learned that there were some plans. Each leadership team shares information about these discussions with who had reservations about our partner- 2. The mailings that went out from the wider membership of its organiza- ship some from within university the Beach Center after the retreat helped tion and solicits input. Input from the settings who feared a potential loss of to maintain the progress made at the scientific rigor, and some from within initial retreat. With each subsequent Continued on page 25 PAGE 24 54 TASH NNWne, MARCH/APRIL 2001 FORBIN NEW ALLIANCES The Evolution of An The second quote is from Martin Luther Ticket to Work and Work Unlikely Partnership: King, Jr.: "Cowardice asks the question, is it Incentives Improvement Act: Lessons Learned safe? Expedience asks the question, is it Concerns and Recommendations politic? But conscience asks the question, is it Continued from page 24 Continued from page 4 right? And there comes a time when one must take a position that is neither safe, nor Base all outcome and milestone politic, nor popular, but he and she must membership may mean that additional payments solely on the level of real make it because their conscience tells them it income earned by an individual. conversations are needed between the is right." The members of our partner- leadership teams. As decisions are ship made such a decision when we made, each leadership team is respon- The role of state vocational reha- committed ourselves to this collabora- bilitation agencies and the relation- sible for follow-up activities. tion. It is the right thing to do for ship between VR agencies and underserved families and for researchers. 10. Having developed a basis for other providers is not clearly defined in the proposed regulations. trust, a belief in good intentions, and a REFERENCES commitment to the partnership, we weathered and learned from the As proposed, there is significant Kritic, P.B. (1994). Negotiating at an concern that state vocational rehabili- "Ooops" factors. We identified and uneven table. San Francisco: Jossey-Bass. corrected mistakes that were made of tation agencies will dominate the system. SSI and SSDI recipients are inexperience or misperceptions. Markey, U. A., Santelli, B. & Turnbull, "presumptively eligible" for VR A. (1998). Participatory action research 11. By acknowledging that our services. If an individual's Ticket is involving families from underserved commu- assigned to VR when they are efforts to break new ground came with nities and researchers: Respecting cultural possible risks for each partner as well, accepted for VR services and develop and linguistic diversity. In B.A. Ford (Ed.) an Individual Plan for Employment, we strengthened out relationship and Compendium: Writings on effective that individual is effectively denied underscored our commitments to each practices from culturally and linguisti- the ability to use the Ticket at a later other. cally diverse exceptional learners (pp. 21- time, without providing access to 33). Reston, VA: The Council for 12 We continually nurtured and services that they were not already Exceptional Children, Division for entitled to. refined our partnerships and the relation-Culturally and Linguistically Diverse ships within them. The process of Exceptional Learners. partnering evolves and changes with Recommendations: each adventure and requires time to assure the quality of the partnership as Clarify the assignment of tickets to well as its joint activities. Questions or comments state VR agencies. about the Beach Center- Provide individuals with clear SUMMARY Grassroots Consortium authority to access VR services that We end with two quotes. The first is collaborative partnership they are eligible for without assigning from an earlier article co-authored by may be addressed to their ticket. members of our partnership. "This Betsy Santelli, The Beach The proposed regulations do not partnership will provide a model for collabo- Center, by phone (763 -525- ration between sophisticated, highly devel- provide incentives for reducing cash oped research entities and families all across 0509) or e-mail benefits for individuals who are not this nation in The interest of improving the PAGE 25 TASK MARCH /APRIL 2001 PARTNERSHIP PRINCIPLES II s S S I I ' I DRAFT PRINCIPLES FOR INDIVIDUAL AND FAMILY SELF-DETERMINATION PARTNERSHIPS amities are defined as two or expressed and respected within the believe would increase their support more people who regard culture of individuals and families. for self-determination. 1Fthemselves as a family and carryout the functions that families 4. Individuals with disabilities 7. The foundations for self- typically perform. They may or may and other family members may vary determination are laid in the earliest not be related by blood or marriage; in their commitment to, and expres- years. Therefore, families should be they may or may not live together: sion of, the principles of self-deter- made aware from the earliest years of and they are almost always influ- mination due to factors such as ways to facilitate the self-determina- enced by their own definition of nature and extent of disability, tion of their children with disabili- family. experience with the service system ties. and the other environmental chal- The following principles relate to thelenges they confront. 8. It is in the best interest of definition and expression of self- the national self-determination determination within families and 5. Many individuals with movement for cross-disability the development of partnerships disabilities have not had their self- individual and family leaders to build among family and individual leaders determination supported by their a common vision for self-determina- to advance self-determination. family members, however some tion. family members have been major 1. Everyone should have the allies for self-determination. We Individuals with disabilities choice to be part of some type of should be cautious in over-generaliz- should have the primary national family. Relying on other people can ing and assuming that all families areleadership role in setting the self- be a good thing so long as the unsupportive. determination agenda, and family parties agree to it. and individual 6. Many factors, such as tradi- leaders should work together to 2. Families usually hold genera-tional societal expectations that move the agenda forward. tional expectations for the expres- families should be responsible for the sion of self-determination by all lives of individuals with disabilities Disability organizations family members, including grand- and a lack of professional and systemshould make self-determination a parents, parents and children. support, have made it difficult for priority, including focusing on it in many families to support, and their conferences, publications, 3. How families and individuals individuals to express, self-determi- advocacy and research, and looking view self-determination and work nation. We need to learn more about at ways to promote partnerships together to express it will be based the barriers that families and indi- among individuals and families. on their culture and values.Self- viduals have faced and what they determination should be defined. '4% PAGE 26 0 0 TARN Ilasznim, MARCH /APRIL 2001 BEST COPY AVAILABLE EMBRA61M INTERDEPENDENCE had their children fully included. After we all introduced ourselves and/or When Barb called me to get together, I brought each other up to date was not exactly clear what we were about children, families, and jobs, we going to be doing. I just knew that I was began the work of the meeting. being invited to spend time with some other parents and talk about what was The simple question that we each were going on with school, about successes asked was "What is the one burning and struggles. I also heard "we'll be question in your life?" That was pretty having something to eat and there will quick and to the point. And since be wine, so get a sitter and plan on a we were gathered there around our great evening." children's situations, my question was "How do I include my son if he doesn't My curiosity was piqued. Four of these want to be included?" (My son had Living the women I considered the "inclusion not been able to deal with being in goddesses." They seemed to have set thesecond grade at the time; he had been standard (and very, very high ones they very disruptive. He was still displaying Questions: seemed to be) for including their chil- aggressive behaviors in the special dren with disabilities in regular educa- education class, as well. We were truly What happened to me during Actiontion settings instead of segregated at odds about what to do.) As everyone Learning, or a description of the programs. I had felt ambivalent a lot of went around and shared their "burning evolving process and some thoughts the time whether or not this was truly questions," it became clear that there along the way possible for my family, given the behav- had been no straightforward path for ioral challenges my son was presenting anyone about what to do for their at school every day. I made a promise tochildren. I listened most carefully to the BY MARY BETH PAUL myself that I would be honest with these woman whose daughter used to women about my huge concerns, doubts have some aggressive and disruptive and fears. But I also just wanted an behaviors when she was younger. This In March of 2000 I was invited to interesting evening with good conversa- soft-spoken and eloquent mother talked participate in an "Action Learning tion and a chance to gab in a relaxed about just taking a year off from Group" with a handful of other atmosphere. trying to do things perfectly; about mothers from central Ohio. The creatively approaching things; about facilitator, Candee Basford, was another What happened at that first evening was getting different people on board to help. parent who had been involved with a simply different and familiar at grant funded through the Ohio Develop- the same time from any gathering I had The facilitator had excellent listening mental Disabilities Council called been to before. The best part about skills. She never dominated, but "Removing the Mask." Among other it was that it was intimate and relaxing. knew how to connect people's questions things, this grant was helping small local We met in the hotel suite that one to another. We, too, were to initiatives make grassroots changes the facilitator had booked for the listen respectfully and without making around long-term needs for their evening, judgments. As people spoke, she children with disabilities. Barb since wrote with words and colorful graphics. McKenzie, a local "activist" parent, she was This kind of non-verbal response invited me to join this particular group from also provided us with her interpretation because we all had ongoing concerns out of of "What I hear you saying is..." about inclusive education and advocacy, town. She might draw yellow "rays" around a especially self-advocacy. We were word to connote energy or warmth; a able to house with a heart around it gave more I already knew four of the five other light emphasis to the meaning of home, and participants; all of us had been in candles, so on. different leadership positions around eat advocacy, education, disability homemade soup and other comfort As I stayed true to my promise to myself rights, both paid and/or volunteer, in foods, eat some chocolate, and share a to be honest with them about my our community. Including the few bottles of wine. No kids, tele- struggles with my son, I felt that people facilitator, five of the seven that made upphones, or crises to deal with. No really were listening to me. As the entire group have children with interruptions. From that standpoint I listened to the others, I heard more Down syndrome. All of us have had at alone it was a real getaway. honesty about the difficulties all least some success including our children in public schools; most have Continued on page 28 PAGE 27 TASK NEINIME,MARCH/APRIL 2001 BORROW IITERDEPOWENCE Living the Questions: What the meetings. I loved that it felt something that flowed from our group Happened to me during Action like we were involved in parent support was simply asking more and more Learning and advocacy, but I loved that it questions that don't necessarily have was something that I looked forward to Continued from page 27 answers. And thus, in the reflection, instead of dreading. (Other groups I am learning to live more comfortably that I had been involved with meant in the gray areas. mailing lists and fund raisings and of us shared. No one had a monopoly programs and committee meetings.) In this kind of atmosphere, we found on the "right answers." Action Learning was a total group of ourselves being gentler with one seven; e-mail and phone calls connected another. During this time of about four We then went around again and shared us in-between meetings; no dues and months, some of our group experienced some possible actions we could take no agenda but the gentle constructs of life threatening illnesses, long-term care around our questions. We were to come the Action Learning format of for extended family, and major life back to the next meeting (about a question-action-reflection-question-etc. transitions. Seeing the changes in the month later) and share something about other members as they dealt with these our actions. We were also to bring As our group formed a closeness, we things was humbling and moving. a gift. This was a nice, open-ended thing began to tell more stories about our to do. There were no other instructions children. Sometimes these were just Also during this time I seemed to about what that meant. delicate, fragile vignettes: a triumph experience a kind of opening up of a of a new skill achieved; the courage to dimension that had been closed off to Before the second meeting, my uncle try something a different way; an me for many years. I was suddenly unexpected guest who wanted to play who had been institutionalized for a meeting people who were asking the period in his life but had come back with my son. I found that hearing all- same kinds of questions. I was bumping home (with various supports), had died. the failures and the successes- was into old acquaintances who were talking I attended the funeral and then wrote an extremely important to me. about getting together to meet and essay about him and his impact on work on problems in the school district. As time went on, I found myself more my life. That helped me bridge my past I was somehow getting connected to apt to call someone from our group for with my present life with my son. more helpful and supportive people than help or feedback when something really This was my "gift" that I brought to the I had met in years. And through it second meeting. Being able to share my tough was happening. I found myself all I tried to listen more carefully to the listening a lot more carefully to other reflections with others who were also questions they were asking. I found people's questions. I found myself struggling with life-long questions was myself being able to connect other listening more carefully to all kinds of quite cathartic for me. Because people people, as well. questions, not just those about my son. were willing to hear me out, I felt like a broken dam with my life pouring out at What has come out of all of this? Well, times. Because this Action Learning group was I felt like I had the energy to get some- funded by the Ohio Developmental thing going with friends who had been Over the course of several months, we Disabilities Council, I received invita- asking some of the same questions as continued to meet. The food and tions to other workshops they were our original group. So Barb and I drink was clearly an important part of hosting. Connie Lyle O'Brien facilitated started a second Action Learning group our final meeting and gave us wonderful consisting of more parents who have or feedback. I found myself at a Self- had been active in leadership roles Advocacy workshop given by John around disabilities in our community. O'Brien, and there I felt a reconnection We have met four times now We came to old friends from my past. to the realization that we need to The shared experiences, story- support one another, but didn't want to telling, reflection and Candee, our Action Learning facilitator, go back to the same old programmed gifts...fosters caring, listening, also brought Jo Krippenstapel into meeting format. This has been sup- "wasting some time together," my life. Jo has since helped me think ported by the "Removing the Mask" and even silence. It is not how through some very difficult aspects grant, as well. to do things the "right way," of my son's behaviors by connecting me but rather, "how can we think to others who are continuing to help. I started to read again about disability- about this problem together?" related issues, both philosophical Since one of the major parts of Action and practical. I also subscribed to an on- Learning is asking the questions, 58 Continued on page 29 BEST COPYAVAILABLE PACE 28 TASK ilanung, MARCH /APRIL 2001 EMBRACED ISTERDEPENDENCE Living the Questions: What But what else has come out of this has was a chance to read-reflect-share- Happened to me during Action been a way to connectedness to many reflect-discuss and then form consensus. Learning other things in life. Questions to think about concerning our local community; The shared experiences, story-telling, Continued from page 28 around use of material goods; around reflection, and gifts brought to inherent value in things; thinking about mind planned retreats that support the meaning of community; watching conversion and community such as this format called Action Learning line listserve about inclusion as well as "Christ Renews His Parish" and "Re- evolve. the TASH listserve. I attended a PATH new" The form of small, grassroots and Creative Facilitation workshop. groups working mutually to support one Action Learning is actually a tool of There I was able to make more connec- another is also similar to "base sorts, a social construct, used by tions,-as well as reconnect again to communities," which first began in business and management to help people and events from my past. I also Central America as an outcome of groups work more productively, more attended the national TASH convention Liberation Theology. It is Church that is effectively, and with greater quality. John last December. decentralized but supportive of small O'Brien has used it with medical households gathering regularly to eat, employees in England. He suggested the Through all of this, my family has had pray, and play together apart from format to some folks in Ohio as a way to to weather a very difficult school year for Sunday worship. work on supporting families at the local my son. He started at a new school, level. Thus, it is being used now to with just about all new students and What Action Learning is not is rigid, facilitate change around issues such as staff. He reacted very strongly against top-down (with a leader who teaches inclusive schools and communities, these changes that were imposed upon self-advocacy, and other social action him, with aggressive actions and issues. Groups have consisted of all disruptions such as screaming. People at parents (such was my group) and school-were at a loss as to what to do school staff. Candee Basford has after attempts to deal with my son the continued to be the main person In the end, while our children same old way yielded little success. with disabilities may be the facilitating these groups, reason we came saying that her goal is "to change the I felt much more able to ask for help together, we ultimately are world, one conversation at a time." from members of my Action Learning people needing each other, group. Some of the help came in the finding in each Candee is fascinated with the process; form of being able to vent safely; other a helping hand to make we engage in a dialogue around that. some came in the form of "why don't a better way for our children. Barb offers many ongoing opportuni- you call so-and-so?" Some came in the In doing that, ties to continue to think about new form of learning that refraining a we make a better way for ways problem can yield different solutions. ourselves. to approach the old questions. I am Some help came from thinking about astounded at the effect that this has had others' stories: if we can weather this, on my intellectual and spiritual life. then we can keep our eye on the long- My husband and I have found a mutual term prize: more language, more or preaches) or absolute. It fosters bridge on which to meet about our friends, being more a part of the corn caring, listening, "wasting some time challenges with our son Peter Ben, and munity; more self-control, more fun; together"-, and even silence. It is not he and I are able to talk much more more meaning and a more interesting how to do things-the right way, but easily about the "what do we do next." life. rather "how can we think about this And as we continue to discuss, Peter problem together?" begins to plan how he can get his Because of Action Learning, I asked our university students in education to school district to ask for more help. This Action Learning also goes against the engage in more reflection, as he, Barb yielded enormous results: our team now grain of the current cultural values. and I formed a mini-Action Learning has on board someone who understands It is not particularly efficient, since only trio. autism, team facilitation, non-verbal a few people at a time meet together. It communication strategies, and sensory won't make anyone rich quick, since it is For me, Action Learning has put me in issues. We are all gaining a better more about being than doing, although mind of a "Holy Way." First, the format understanding of what might be making my son tick. reminded me of church liturgy planning meetings I used to be involved with. This Continued on page 30 59 PAGE 29 TASN ikvamm, MARCH/APRIL 2001 a EMBRACIID IITERDEPENDENCE Living the Questions:What At An excellent description of Action payments, significant savings are the doing follows from being together. Learning can be found at 0 (Anderson et al., 1999, p. 5), while seven resources or creativity will make it .11.111-0.01` .4141.1"41.. states operate no large state facilities. possible for a child to remain with her or Five states report more than 450 chil- his birth family, then an alternate family dren under age 18 living in public or needs to be found. There is a common Do We Really private institutions of 16 or more beds belief that, however desirable, alternate Mean Families for (Hemp, 2000). While the impediments families cannot be found for some each state experiences are complex, children. The evidence usually cited to All Children? three common beliefs are present in the support his claim is the difficulty that Permanency folklore of difficulties expressed at the child welfare systems experience in Planning for "street" level of implementation of finding enough families. As the logic 0 permanency policy: some children goes, if you can't find a family for Children with cannot live with families; alternate typically developing children, then you Developmental families can't be found, and birth parents surely cannot-find a family for a child won't accept another family. with severe disabilities. This logic fits Disabilities the negative societal image of disability Misconception: Some children cannot as something no one would voluntarily BY NANCY ROSENAU live with families. While there is broad seek, and its corollary that a person with consensus in favor of children with a disability is someone no one would milder disabilities living with families, voluntarily include in her or his family ro " 11-11'111%.a skepticism that children labeled with or close personal network. more severe levels of impairment can live with a family is part of our folklore. This mistaken belief is dispelled by three The impression, sometimes stated sources of evidence: Though family support has outright and sometimes merely implied become the dominant form of by our practices, is-that some kids are 1. An estimated 1.9 million _ services for children with "just not family material." This myth is individuals with developmental disabili- developmental disabilities, nonfamily best dispelled by the fact that a child ties live with families (Braddock et al., residences still exist for these children. labeled with every kind and severity of 2000, p. 41). The statement that "all children should disability is currently living successfully grow up in families" is far from includ- with a family. While one family finds a 2. At least 6,000 children with ing all children. Permanency is a child's needs too great or their lifestyle developmental disabilities live with concept that seeks to assure a permanent.too restricted, another family with a foster families (Hemp, 2000). family living situation for children. child with identical labels is doing well. Permanency activities include family The disability alone is not the reason for - Alternate families are successfully preservation, family reunification, and nonfamily life. We must look beyond recruited by organizations that have finding alternate families for children the child for an explanation. A more devoted significant energy to the process. who cannot remain with their birth complex understanding leads to consid- families. eration of two broad areas: (1) the Both our policies and our practices nature of supports to families; and (2) for children with developmental Twenty years have passed since perma- the recruitment of alternate families. disabilities are too little directed to nency became accepted practice in child permanency. Parents who are welfare. Ten years have passed since the Family support has grown dramatically respectfully engaged in a discus- call went forward for its application to in the past decade. Yet, as dramatic as sion of permanency can and do children with disabilities. Yet, perma- the increase is, it falls far short of the seek to place their children with nency policy has yet to be embraced as needs of somefamilies.Tremendous other families. Where supports an imperative in services for children differences exist among the states in the are inadequate or no alternate families exist, families may repre- with disabilities. Following is a discus- level of their commitment to supporting sent the only alternative. Where sion of some of the impediments to families. Clearly, a commitment to facilities exist without viable implementation of permanency. families as a priority requires a commit- alternatives or no opportunity is ment to funding and designing supports offered to work through reluc- There is a significant disparity between that will provide whatever it takes to tance, parents may "choose' a the rhetoric that "all children belong make that possible. residential facility. That is not a with families" and the reality. There is choice, but a default position. great variability nationally. Eight states Misconception: Families can't be reported 10% or more of their large found for children with significant facility residents as 0-21, years of age disabilities. When no amount of Continued on page 32 PAGE 31 MIN Nanams, MARCIVAP1111. 2001 CENTER ON HUMAN POLICY Permanency Planning for strategies that have, however, seen Families can make responsible decisions Children with Developmentalrelatively little generalization. about permanency, but questions about D5 abilities permanency need to be posed. Too Continued from page 31 Experiences of places such as Macomb frequently parents are steered toward Oakland Regional Center and Every residential placements by professionals Child, Inc., where alternate family who are themselves reticent to confront placement is made by voluntary agree- the issues. Parental choice of a residen- The availability of alternate families is ment with the birth family, demonstrate tial facility cannot be treated simply as a directly related to the energy put into the feasibility of this approach. A closer preference out-of-context with its seeking and preparing them. Where look at their strategies finds three permanency implications. Failure to energy has been great, families have important elements at work: (a) high address permanency is a disservice to been found. Where families have not quality alternate families are readily the family as well as the child. Parents been found, energy has either not been available; (b) the relationships between who are respectfully engaged in a great, has been diluted by competing the birth family and the person who discussion of permanency can and do responsibilities, or has employed works with the birth family is carefully seek to place their children with other ineffective strategies. The success of built through trust and longevity; and (c) families. Where supports are inadequate program like Macomb Oakland Re- the birth family retains the decision or no alternate families exist, families gional Center in Michigan (Taylor, 1991) about a particular family for their child. may represent the only alternative. and Every Child, Inc. (formerly Project Where facilities exist without viable Star) in Pennsylvania (Taylor, Racino, The process alternatives or no opportunity is offered Walker, Lutfiyya, & Shoultz, 1992) in of conver- to work through reluctance, parents may finding families for large numbers of sion from "choose" a residential facility. That is children with severe disabilities gives reticence to not a choice, but a default position. testimony to its feasibility. The fact that acceptance the MR/DD agencies in nine state involves One problem is that facilities for chil- report no children with developmental helping the dren exist. By their very existence they disabilities under age 18 living in birth family come to be justified and admissions facilities with over 16 beds, and over to see how continue. When a family is struggling, 1,000 children (in aggregate) living in an alternate rather than reviewing which facility is foster care, gives testimony to the family most appropriate, the issue should be feasibility of family residences (Hemp, differs from with which family the child should live. 2000). them. Presenting the possibility of That review is relatedlo what kinds of alternate family care requires an expla- support a family can accept. Which Misconception: Birth families won't nation of how another family can do family can accept the child and the accept another family. As the logic of what a loving birth family cannot. This child's needs and the challenges that this misconception goes, even if alter- involves pointing out differences such as may be required to meet the child's nate families could be found, birth the choice to raise a child with a disabil- needs and the lifestyle that accompanies families will not accept them. It is true ity, the choice of type of disability, the challenges? Permanency planning that many birth families initially believe preparation prior to having the child, will help to sort out what the birth that if they who love their child cannot and beginning at a peak of readiness andfamily needs and when an alternate continue to have her or him live at home,energy. While those differences can family is needed. Permanency planning then no other family could either. At make alternate family care more palat- will help sort out how birth and alter- first blush this seems reasonable and able to consider, experience has shown nate families will relate to each other logical. It is dispelled, however, by the that the real convincing comes when the and share in making a secure family fact that many families do come to birth family is introduced to a particular home for every child. Respectful but accept that an alternate family can raise alternate family. If the recruitment assertive exploration of permanencycan their child. Experiences in Michigan, process has been done well, the very allow a mutually satisfying arrangement Pennsylvania, and elsewhere have attributes of the alternate family will be that fulfills the vision that all children provided clear practical advice about apparent. In the experience of Macomb grow up in a family. how to handle the emotionally charged Oakland Regional Center, hundreds of and potentially conflictual issues birth families have made the choice Reality: Lack of data hampers policy involved in coming to this acceptance. voluntarily. assessment. The acid test of perma- These experiences have helped develop nency is how many children do not live successful strategies since the mid-1980s, The family support movement calls for with permanent families. We currently recognition that families are competent. Continued on page 33 PAGE 32 TASK Niwsunm,MARCII/APAIL 2001 CENTER ON HUMAN POLICY Permanency Planning for placements of children, require a written and movement of residents of large state Children with Developmentalpermanency plan for all children served, facilities. In R. W. Prouty & K.C. Lakin Dsabilities and require periodic administrative (Eds.), Residential services for persons Continued from page 32 review of permanency plans and non- with developmental disabilities: Status family residential placements. and trends through 1998. Minneapolis: University of Minnesota, Research and State, local governments, and service Training Center on Community Living, have no systematic way to track children providers should invest in relationship- Institute on Community Integration. with disabilities in order to judge the based family support. They should: security and nature of their family Braddock, D., Hemp, R., Parish, S., & situation. We do not reliably know how Review policies that inhibit relation-Rizzolo, M.C. (2000). The state of the ships. many children do not live with families. states in developmental disabilities: 2000 Our data keeping is not organized to study summary. Chicago: Department indicate whether children live with Support strategies that enhance of Disability and Human Development, relationships. families and whether their family life University of Illinois at Chicago. reflects permanency principles. None of the readily available national data sets Increase the match between needs Hemp, R. (2000). State of the states tracking trends for persons with develop- and responses. developmental disabilities project. mental disabilities clearly identifies the Unpublished preliminary data. Depart- total number of children living in non- States, local governments, service ment of Disability and Human Develop- familly settings. providers, and advocates should invest inment, University of Illinois at Chicago. alternate family recruitment. They Taylor, S.J. (1991). Toward families for Over the past 20 years, data collection should: all children. In S.J. Taylor, R. Bogdan, on a national scale has improved & J.A. Racino (Eds.), Life in the com- dramatically. Data collection not only Recognize the protracted process munity: Case studies of organizations identify trends, it steers them. By asking involved in family decision-making. supporting people with disabilities (pp. questions at a national level, agendas are 19-33). Baltimore: Paul H. Brookes set and priorities are identified. What is Provide dedicated energy to Publishing Co. asked, and what is not, tells much about recruitment. what is considered important in develop- Taylor, S.J., Racino., J.A., Walker, P., ing services for people with disabilities. Disseminate successful strategies. Lutfiyya, Z.M., & Shoultz, B. (1992). If we don't track where children are, we Permanency planning for children with are less able to judge how well our All stakeholders, policymakers, advo- developmental disabilities in Pennsylva- systems are doing in providing for cates, and community members should nia: The lessons of Project STAR. permanency for children with develop- work together to connect permanency, Syracuse: Research and Training Center mental disabilities to assure all children family support, and alternate family on Community Integration, Center on grow up in a family. recruitment as inseparable elements of Human Policy, Syracuse University. policy and practice to assure a family home for all children. Note: This article is from a longer policy Conclusion and Recommendations research brief published by the Research and Both our policies and our practices for Training Center on Community Living, children with developmental disabilities University of Minnesota. It was written by are too little directed to permanency. Nancy Rosenau is Principal Researcher, Nancy Rosenau while she served as a The United States as a nation and at the Disability Foundation of Visiting Researcher at the Center on Human Policy, Syracuse University, Syracuse, New individual states should invest in Australia, Inc., 235 Napier St., Fitzroy permanency. They should: York. Her authorship was supported, in Victoria 3065. Questions or comments part, by the National Resource Center on about this article may be directed to Ms. Supported Living and Choice, Center on Adopt permanency as a policy for Rosenau by e-mail, Human Policy, School of Education, all children. carried throughout the series. The point is driven home in every episode, quite deliberately and bluntly. Camera angles and music help to heighten the drama, evoking the prescribed mood for each event. Although the cameras do capture spontaneous interactions and responses from the island inhabitants, or contes- tants, or whatever you want to call them, there's nothing accidental about the show. Through explicit rules, elaborate rituals, and deliberate editing, the program presented to us is exactly what the producers want it to be namely, a tribute to our country's most punitive This article was written during the first and losers. It's perfect summertime fare, social and economic policies. season of the CBS program. "Survivor" dramatic and fun, if you don't think too hard about it. That's my problem: I Blending sophisticated production think too hard about it. techniques, Survivor pulls us, the viewers, /just found another reason to kill my into an adventure. Then, while it's got us television. But I probably won't. ForWhen I watched the first two episodes, I riveted to the screen, it seduces us into me, TV is more than just electronic could see those exciting elements. I participating in an insidious selection entertainment. It's a source of insight, knew Survivor would be a hit. But I also process. Ask anyone who has watched and stress. It's a 32-inch window lookingfound watching it profoundly uncom- the show, what is the most gripping and straight into our nation's soul. I don't fortable. At first, I couldn't understand memorable part of each episode? It's the always like what I see there. But I can't why the show bothered me so much. My "tribal council" meetings, where a group seem to look away. first, inarticulate critiques were that the must decide which of its members to show was "stupid" and "contrived." But send packing. TV's latest offense is the CBS series that describes about 90 percent of what's called "Survivor." It's part of a strangely on television. There was something The final vote, where one person is popular entertainment genre called about Survivor that disturbed me more deemed unfit to stay, becomes the "reality television." That's a misnomer: than usual. compelling climax of each hour-long the central situation of Survivor is about segment of "Survivor." As each indi- as far from the average American's Over the next few days I began to vidual enters the "voting confessional," reality as "The Wizard of Oz." How understand my visceral reaction to the we hang on every word of their pseudo- many viewers can relate to the experi- show. I saw a carefully-developed private reflections. We hear them ence of being placed on a desert island message emerging from the very first considering the undesirable traits of with a group of strangers, and having to episode. It's a message that I, as a whichever of their companions they compete in various bizarre competitions disabled person and an advocate for have decided to reject. They use terms like raft races and gross bug-eating people with disabilities of all ages, have like "weak link" and "not contributing." contests? The "reality" part means that every reason to fear. instead of paying actors, the show uses This process of deciding whom to eject regular people. Here, in a nutshell, is the message: The is clearly the show's main attraction. strength of a group depends on, and That's what gets people talking. The Despite its non-existent grip on reality, justifies, getting rid of its less powerful fansites are full of invitations to "click Survivor seems to have caught the members. That same theme has been here and vote on who should be the next public's imagination, rewarding CBS survivor to be eliminated." Viewers are with high ratings, aiding the network's /onununitiesaren'tcomma:\ irresistibly drawn into the Survivor financial survival. The show has become nities if they exclude any- dilemma: Which members of the group fodder for workplace gossip and David one. It isn't physical prow- are assets, and which are liabilities? Who Letterman jokes. It has taken on a life of ess or cutthroat competition should stay, and who should go? its own on the Internet, spawning that makes a society strong; dozens of fansites. it is solidarity, the ability As we follow the series from week to and willingness to include week, we viewers are seduced into everyone in the ongoing life accepting the show's unspoken essential Why is the show so popular? An exotic of the community. location, a diverse mix of personalities, cooperation and competition, winners Continued on page 35 PAGE 34 64 TAU Ihnuns, MARCH/APRIL 2001 SWIM PROMOTES IDEOLOGY OF EXCLUSION Survivor: Eating Bugs Kevorkian would have been prosecuted tions on this theme recur repeatedly Wasn't the Scariest Part and convicted much earlier in his career during the series: If you can't keep up, Continued from page 34 had he been killing people without you've got to go. disabilities. His victims were denied the equal protection of the law simply I can't help thinking it's no coincidence premise that in order for a society to because their health status got them that Survivor appeared at this point in be strong, to survive, certain individuals branded undesirable members of society.history, when powerful economic may have to be expelled. The process of interests are promoting an agenda of voting people out is presented as harsh, What does all of this have to do with scarcity and denial. Civil rights laws like but necessary. As each "tribal council" Survivor? No one on the island has an the Americans with Disabilities Act meeting begins, each participant lights a apparent come under attack as a threat to business torch and places it ceremoniously next disability. growth. Corporate welfare subsidies to his or her seat, while the rather This is a enrich the rich, while already- obnoxious host of the show explains notable underfunded public health, education, soberly that the flame "represents your omission, and income support programs come life, your identity." Then, when the final given that the under attack as a drain on society. vote results are announced, the unlucky show's Increasingly, poverty is viewed as a outcast must extinguish his or her torch producers personal failure, a criminal act deserving and disappear into the jungle, never to obviously put punishment. Discrimination is dismissed reappear in that community again. Thus, a great deal as paranoia. These attitudes result in the weak link of the week is not only of effort and denial of help or, more to the point, banished, but metaphorically killed. thought into creating a diverse group. justice to poor people. That frees up Their flame, symbol of their life, is The cast of castaways includes several more resources for the rich and power- snuffed out by majority vote. African-Americans, an "out" gay man, a ful. range of occupations from doctor to My own revulsion at this show, I think, truck driver, and a group of hearty Or, to look at it somewhat more optimis- arises from my suspicions that on some women who don't shrink from building tically, perhaps we are seeing a backlash level, it's sending a message that I've fires or eating vermin. Given the difficultagainst recent progress in social justice. heard before. People with disabilities, in living conditions and the demanding The disability rights movement has particular, have often been singled out, "challenges," it goes without saying that achieved a few modest gains in making branded unfit, and sent away. Nursing a person with a physical disability society more accessible and accommo- homes and other institutions are full of wouldn't make it. Perhaps the producers dating. For every step forward, we meet people, young and old, who have been wanted to avoid a scenario in which resistance. Children with disabilities essentially banished because they cannot someone with multiple sclerosis, or have a federally-guaranteed right to be function with complete self-sufficiency. blindness, had to be voted off the island. educated in regular classrooms with Rather than support these people in It would seem cruel and politically appropriate supports; but parents of living in their own homes and communi- incorrect. It would make the show's nondisabled children often object that ties, public and private health agencies, harsh philosophy just a bit too apparent. the presence of a student with learning and even families, choose to relegate disabilities will detract from their own people with disabilities to human Nevertheless, I am guessing that vari- "normal" child's educational experience. warehouses. ances in physical ability will be an In the midst of these escalating social undercurrent throughout the series. The conflicts, there now appears a game In some quarters, disability is seen as a line between ability and disability will be show mere harmless entertainment. crime deserving not only confinement, thin and constantly moving. A contes- It's fun and gossipy, so we don't question but death. Jack Kevorkian received a tants' survival will often depend on its underlying principles. But the rules of "citizen activist award" from a suppos- which side of that line they're on during this "game" seem designed not just to edly progressive foundation. His that particular episode. In the debut reward the winners that's an expected contribution to human progress? He episode, the democratically-elected loser part of any game but especially to helped to kill over 100 people, most of was a woman who consistently demon- punish the losers. whom had non-terminal disabilities. It is strated compassion and cooperation, but true that these people requested "suicide who sprained her ankle and fell during Somehow, I realized this game seemed assistance" from Kevorkian; but if they the group challenge, slowing down her eerily familiar to me. I remember had been able-bodied, and depressed team. From the moment she showed exercises I participated in during over some situation other than disability such weakness, her fate was sealed. Her adolescence several times at church divorce or unemployment, say companion-competitors started talking youth camp, once in a high school class their request would not have been about how she was "holding back" the considered a mitigating factor. group. I will not be surprised if varia- Continued on page 36 PACE 35 6j TASK ihrsurim, MARCH/APRIL 2001 SOINNOR PROMOTES IDEOLOGY OF EXCLUSION Survivor: Eating Bugs ineffective "special ed" setting where I seen genuine efforts to create sustainable Wasn't the Scariest Part had spent my first two years. Since then societies efforts that could teach those TV "survivors" a thing or two. There are Continued from page 35 I had thrived academically, and we never regretted the hard-won change. But so many ways to contribute to a group occasionally I still found myself at odds effort, and every person can be valuable called "values clarification." This with other people's attitudes. I remem- if given the opportunity. I've seen people involved a group discussion about ber, in particular, a journalism teacher with severe disabilities, who grew up in making difficult choices in some hypo- who consistently discouraged my institutions, who were denied any thetical adverse situation. As I recall, ambitions. When I applied to be editor- chance for a formal education, who by these exercises were supposedly intended in-chief of the high school newspaper, conventional standards had few skills to help us understand our own beliefs. she made me features editor instead, and no power and watched as these That sounds benign, even enlightened. even though I had more experience and same people evolved into true leaders. But in reality, I remember I often felt skill than any other journalism student. They were not leaders in a competitive deeply troubled not only by the out- Then a friend told me about a casual or domineering sense, becoming winners comes of these discussions, but also by conversation her mother had had with by making other people lose. Rather, their instigation. this teacher. The teacher told this they commanded respect for their own acquaintance that I should not be in her unique qualities. A typical example: My peers and I were classroom at all, but should be in a told to imagine being stranded on a "special" school instead. I can still recall Perhaps we all live on an island of some lifeboat, along with an assortment of the horror, confusion and shame I felt kind, with our own assortment of strangers and a dwindling supply of foodwhen I heard her views stated so companions. On my island, which is to and water. Our companions on the boat blatantly, even from a secondhand say my conception of society, everyone included a young pregnant woman, a source. belongs. Everyone contributes. Everyone surgeon, an unemployed drifter, an is absolutely necessary, until natural elderly man, a Boy Scout, a woman withSuch attitudes have not disappeared. I events or their own choices take them cancer, and so on. The setting and the continued to confront them as an adult. Isomewhere else. Some of them earn cast of characters varied, but the basic once found myself debating the merits admiration for their devotion to the idea was that some people would make of the Americans with Disabilities Act cause, their willingness to perform it, and some people wouldn't and that(ADA) with a belligerent radio talk showseemingly "menial" tasks with good it was up to us to decide, based on what host. He was furious that government humor and utmost dignity, to help the we thought of the relative value of each dollars would be spent on adaptations success of a campaign. Some find and fictitious person. like ramps, elevators, and telephone nurture innate talents for art or music or devices for the deaf. I pointed out that political theory, and use those talents to I never had much to say during these we all use structures and services paid strengthen their communities. Some discussions. When they were over, I for from the public coffers. I mentioned simply live their lives, defying all often had a queasy feeling that stayed highways and schools. This really raised attempts to exclude or marginalize them, with me for several days. I never fully his self-righteous ire. He blustered, "The and in doing so they model an ideal to understood why, until much later, as an difference is, I am a net tax payer, while which we can all aspire; this may be the adult. I gradually came to understand YOU are a net tax user!" His easy use ofgreatest contribution of all. that these so-called "values clarification" this terminology told me that it was not exercises were based on a preordained a concept he had invented on the spot; Communities aren't communities if they set of values, which I could not accept. clearly, his worldview was based in large exclude anyone. It isn't physical prowess The games assumed that there weren't part on this neat division of the popula- or cutthroat competition that makes a enough resources to go around, and that tion into two groups: those who contrib- society strong; it's solidarity, the ability some people have more value, more ute to society, and those who only take and willingness to include everyone in right to live and to consume resources, from it. I might have been shaken by the ongoing life of the community. than do others. being placed on the wrong side of his We're all in the same lifeboat planet harsh dichotomy, as I was by my high earth and no one can be voted off. As a kid with disabilities, these assump- school teacher's prejudice. But by then I Now that's reality. tions and the conversations they had developed a worldview of my own prompted made me nervous. Perhaps a worldview, shaped by the disability- Laura Hershey is a disability rights leader, I was already acquainted with the idea rights movement, very different from poet, writer and trainer. For more that some people just don't belong. Years that of Survivor. information on Ms. Hershey's work, please earlier, my parents had had to battle the visit her new web site address, http:/ / local school board to get me placed into In the disability rights community and www.cripcommentary.corn a regular classroom, rather than in the other social change movements, I have ito PAGE 38 6 6 TAN Nauss& MARCH/APRIL 2001 PROMOTING HUMAN RMIITS FOR CHILDREN "Human rights are inscribed in the and require that these rights be imple- hearts of people; they were there long mented in accordance with the before lawmakers drafted their first Convention's guiding principles.Ar- proclamation." ticles 42-45 cover the obligation of States Mary Robinson The Convention Parties to disseminate CRC principles U.N. High Commissioner for and provisions concerning implementa- Human Rights on the Rights of tion and monitoring of progress towards the Child: the realization, of child rights obliga- tions, as well as reporting responsibili- This TASH Connections report An Overview, ties. The final clauses (articles 46-54) provides an overview of the an Update, and cover the processes of accession and Convention of the Rights of the ratification by States Parties; the Child (CRC), an update on CRC a Challenge Convention's entry into force; and the implementation issues, and a six-point depositary function of the Secretary- agenda for inclusive disability policy for General of the United Nations. the CRC and a rationale. BY ANNE SMITH and Article 23 is the only one that specifi- An Overview WHY SAYEED cally addresses disability and its four provisions state: The Convention on the Rights of the Child (CRC) was carefully drafted over States Parties recognize that a child the course of 10 years (1979-1989) with with mental or physical disabilities the input of representatives from all to be protected from torture or should enjoy a full and decent life, in societies, all religions and all cultures, cruel, inhuman, or degrading treatment conditions which ensure dignity,_pro- and was based upon varied legal systems or punishment; mote self-reliance and facilitate the and cultural traditions (http:// to be free from arbitrary deprivation child's active participation in the www.unicelorg/crc/ of liberty; to special treatment within the community. introduction.htm).The Convention has justice system; and been ratified by 191 countries and to education, health care, an States Parties recognize the right of protects children's rights by setting adequate standard of living, and free- the child with a disability to special care standards in health care, education and dom from economic exploitation and and shall encourage and ensure the legal, civil and social services. These other abuse. extension, subject-to available resources, standards serve as benchmarks against to the eligible child and those respon- which progress can be assessed. States The CRC consists of 54 articles that sible for his or her care, of assistance for that are party to the Convention are incorporate civil and political rights as which application is made and which is obliged to develop and undertake all well as economic, social, and cultural appropriate to the child's condition and actions and policies in the light of the rights of all children. The CRC is to the circumstances of the parents or best interests of the child. grounded by four underlying values or others caring for the child. "guiding principles" : Like all human rights treaties, the CRC Recognizing the special needs of a first needed approval or adoption by the The first 41 articles outline the human child with a disability, assistance United Nations General Assembly. On rights to be respected and protected for extended in accordance with paragraph November 20, 1989, the U.N. General every child under the age of 18 years, 2 of the present article shall be provided Assembly adopted the CRC into interna- free of charge, whenever possible, taking tional law. All recognized nations into account the financial resources of around the world, except for the United Four guiding principles of the parents or others caring for the child, States and Somalia, have ratified the the Convention on the and shall be designed to ensure that the Convention on the Rights of the Child, Rights of the Child child has effective access to and receives pledging to uphold its protections for education, training, health care services, children. Today, the Convention on the rehabilitation services, preparation for 1. Non-discrimination (Article 2) Rights of the Child is the single most employment and recreation opportuni- 2. Best interests of the child widely ratified treaty in existence.The ties in a manner conducive to the child's (Article 3) CRC recognizes that children have the achieving the fullest possible social 3. Survival and development right: integration and individual development, (Article 6) and including his or her cultural and spiritual 4. Participation (Article 12) to be free from discrimination; development. to be protected in armed conflicts; Continued on page 38 PAGE 37 67 TARNIIMUMEB, MARCH/APRIL 2001 PROMOTING HUMAN MGM FOR CHILDREN The Convention on the pressed governments for specific re- An Opportunity Rights of the Child: An forms. Overview, an Update, and On September 30, 1990 the World However, Human Rights Watch (1999) Summit for Children galvanized a a Challenge reports that, "Children living outside war worldwide commitment to children. On Continued from page 37 zones' may also be subjected to routine that day, 71 Heads of State or Govern- violence. Street children on every continent ment signed the World Declaration and endure harassment and physical abuse by Plan of Action, committing themselves States Parties shall promote, in the spirit of international cooperation, the police. Even schools, intended to promote the to achieving an agreed set of time-bound healthy development of children, may be the exchange of appropriate information in goals and mobilizing the human and site of abuse against children. In some the field of preventive health care and of economic resources to do so. The countries, the use of corporal punishment by medical, psychological and functional Declaration and Plan of Action set forth teachers has resulted in injury and even treatment of children with disabilities, a vision of a "first call" for children by death. In others, gay and lesbian students including dissemination of and access to establishing 7 major and 20 supporting information concerning methods of endure harassment and violence by their goals that were considered achievable by peers, while school authorities fail to inter- rehabilitation, education and vocational the year 2000. Subsequently, 181 vene. Millions of children have no access to services, with the aim of enabling States countries endorsed the World Declara- education, work long hours under hazardous Parties to improve their capabilities and tion and the Plan of Action, 155 of conditions, or languish in orphanages or skills and to widen their experience in which prepared national plans of action detention centers where they endure inhu- for children. these areas. In this regard, particular account shall be taken of the needs of mane conditions and daily assaults on their dignity, in violation of the rights guaranteed A Special SessiOn of the U.N. General developing countries. to them under the convention." The Convention on the meaningful input to the process of the Inclusion International is represented on Rights of the Child: An Special Session. the Working Group, and TASH needs to Overview, an Update, and consider avenues to provide meaningful The monitoring period for the U.N. input. a Challenge Standard Rules has been extended to Continued from page 38 allow for further impact on governments Think globally, act locally While and national policies; and The Special the Convention on the Rights of the Rapporteur has been asked to pay Child is addressed to governments as The TASH International Issues Com- special attention to the issues of children representatives of the people, implemen- mittee presented the following six-point with disabilities as the Rules did not tation is actually the responsibility of all agenda for inclusive disability policy/ cover their issues adequately. The Panel members of society. CRC standards can development for the CRC to the TASH of Experts may be reconvened to be realized only when respected by Board in Miami in December 2000. provide direction and Inclusion Interna- everyone, including parents and mem- bers of the farhily and the Six Point Agenda for Inclusive Disability Policy Development for the CRC community, as well as people Needed Policy Goals What it Would Mean to Achieve this Goal working in schools, in other public and private institutions, 1. Establish inclusive values. rights, and All children must be valued equally in law, public policy and in services for children, in the approaches for healthy child practiceregardless of disability, or genetics or other development characteristics. The unique potential of all children must be courts and at all levels of developed. government administration. 2. Make reduction of child and family Labor markets, income support programs, workplaces, and How will we, as TASH poverty a priority family supports must be designed to ensure adequate household income and have the flexibility to provide needed members, and TASH as an care and nurturing for all children. organization respond? 3, .Ensure needed child and family Supports must be provided in flexible ways that strengthen supports - at home and in the citizenship by ensuring resp6nsiveness to both child and family community needs. Anne Smith and Zuhy Sayeed are Co-chairs of the 4. Foster inclusive communities Community services including schools, health care, recreation, and social services must be universally designed and operate TASH International Issues inclusively. Committee. Questions 4. Strengthen civil society and build Decision-making in public organizations, agencies, schools, about the Convention on solidarity. hospitals, government bodies must be democratized to include the Rights of the Child, or diverse family perspectives. Family organizations must be strengthened, and their participation in policy development other areas of the supported. committee's work may be 6. Commit to information gathering on Population surveys, needs identification, and policy addressed to Dr. Anne disability for inclusive policy development must incorporate a "disability lens" to bring focus Smith by e-mail at development to the issues and needs of children and families. BEST COPYAVAILABLE. PAGE 39 69 TARN ammo, MARCH/APRIL 2001 TASH NEWSLETTER Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Chair, Executive CommitteeBob Kafka torial judgement in selection of materials. All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Marcie Roth Terms such as "people with mental retardation," "children with autism," and "in- Linda Bambara, Ex-Officio Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Wanda Blanchett Richard Sobsey ment for a product or service does not imply TASH endorsement. For a copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio Jacqueline Thousand 8274, ext. 102. June Downing Lucille Zeph MEMBERSHIP INFORMATION Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: Is the above your work address home address other Please Check Appropriate Categories ( ) Educator/Teacher (K-12) () Related Services Provider (not more than three): ( ) Government Personnel () Self-Advocate () Administrator/Adult Services ( ) Legal Services Provider () Social Worker () Administrator/Education () Occupational/Physical Therapist ( ) Speech/Language Pathologist ( ) Administrator/Other ( ) Parent/Family Member ( ) Special Education Teacher/Support ( ) Adult Service Provider/Staff () Personal Assistant Specialist ( ) Advocate/Friend ( ) Professional/Public Policy Advocate () Staff Developmentarainer ( ) Behavioral Specialist ( ) Professor/Instructor-College/University ( ) Student -( ) Case Manager ( ) Psychologist () Supported Employment ( ) Early Childhood Services ( ) Regular Education Teacher/Administrator ( ) Other Moving? 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Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank; *These prices are for both International and Chapter memberships. For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column. For a list of membership benefits, please 8274. call 410-828-8274, ext. 107. oTFISH NONPROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE Suite 210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274, PERMIT NO. 187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: wwwtash.org Address Service Requested MARCH/APRIL 2001 PRINTED IN THE U.S.A. VOLUME 27 ISSUE NUMBER 5/6 MAY/JUNE 2001 Equity, Quality and Social Justice for People with Disabilities I Can Go Od Supports Happen in Bad Places? Unlocking a Universe of Opportunities in HouMng Expanding our Thinking on Housing Choice Accessible Homes Mean Barrier-Free Friendships Advancing Affordable, Accessible, and Integrated Housing for All Americans Increasing Homeownership Opportunities or People withDisabilities EST COPYAVAILABLE MAY/JUNE 2001 TABLE OF CONTENTS It From the Executive Director Page 2 Governmental Affairs Update Page 4 2001 Annual Conference Page 6 2001 TASH Techs Page 8 learning materials EarlybirdConferenceRegistration The Professionals' Choice Form Page 10 Unlocking a Universe of Opportunities in Housing Page 12 Stages Learning Materials Expanding our Thinking on Housing is the education inclustrys Choice Page 17 leading producer of A Home of My Own Page 21 attractive, high-quality Accessible Homes Mean Barrier-Free photographk flash cards Friendships Page 23 designed to teach basic Housing Resources Page 25 language skills to both Advancing Affordable, Accessible, and In- children and adds with tegrated Housing Page 26 atitISM. speech and Agency Conversion to Individualized language dekors. Residential Support Services Page 28 ,o,dereiortinentai--- disorders. or brain injuries. Available Card Sets: TASH (formerly The Association for Language Builder. Picture Noun Cards 350 cards Irons 9 different categories. including animals. vehicles. foods. clothing, Persons with Severe Handicaps) is an furniture, toys. everyday objects. shapes and colors. Features cards to teach international advocacy association of identical and similar matching, as well as receptive and expressive labeling. Language Budder: Ocagration Cards people with disabilities, their family 1 16 cards featuring male and female depictions of common occupations. Ideal for labeling, as well as descriptive and Imaginative exercises. members, other advocates and people The IMO Cuffent and reakstk cards on the market. who work in the disability field. TASH actively promotes the full in- VW% ow umbsito atwww.stagesleaming.com or cal888-50 1 -8880to plats an order or receivetree color brochure. clusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD tiatisiI 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. r7Milttittc. 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) OTI1S121 828- TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible; For questions about the 2001 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: Jamie Ruppmann, Director of Advocating for opportunities and rights; Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: [email protected] Eradicating injustices and inequities; For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and TASH Connections is available on audiocassette, in large print, and in Braille fir people whose disabilities make these alternative litigation; and, formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in TASH Connections should be sent to: TASH Connections, 29 W Susquehanna Avenue, Suite 210, Baltimore, Promoting excellence in services. MD 21204, Attn: Connections Editor.Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. 1.1 BEST COPY AI/ARABLE PACE 2 TASH CONNECTIONS, MAY/JUNE 2001 FROM THE EXECUTIVE DIRECTOR mission as supporting people with I recently received a phone call from a disabilities "so they can access a wide woman who told me that she worked in range of life's possibilities by fostering a twelve-bed group home for men with independence, self-esteem, and the cognitive disabilities. "We want to fullest participation in family and implement a program of consumer- community life." Voice of the Retarded, directed services" she told me, "but the only national organization that fightsthere's this one guy here who is very for institutions to stay open, says that it difficult. He won't eat at mealtimes, he is their mission to focus on "quality of insists on doing everything his own way, life and choice" and that they support and basically, he refuses to go along with "the right to live where [people with the program. What would you recom- disabilities] feel comfortable, safe, and mend I do?" she asked. I wanted to be From the Executive Director happy". Even the Judge Rotenberg helpful, I wanted to be diplomatic, but I BY NANCY WEISS Center, an institution in Massachusetts couldn't think of any other response. notorious for its indiscriminate and "Close it down," I told her. We then inhumane use of electric shock and went on to have a long talk (which Can geed supports other aversive procedures to change hopefully was more helpful then my people's behavior, says that they "use initial response) about why a person happen he bad places? behavioral procedures that rely on who lives with eleven other men, whom positive-only approaches" and that their he had not chosen to live with, might be This month's issue of TASH goal is to "impart the skills each indi- rebelling against the regimentation that Connections focuses on housing vidual needs in order to live a happy, such a life requires and why there is no but as the articles convey, where normal and productive life." Could it be way for self-directed supports to be one lives is only part of what makes for that everybody is doing it? Could it be compatible with this kind of environ- a good life.It's how one lives that makesthat an organization like TASH no ment. the difference for all of us. Choosing longer needed because progressive where and how one lives and having supports have become status quo? In evaluating the quality of community access to a self-directed, flexible array of supports there are many questions one supports is the combination that results The readers of this publication will could ask. Many checklists exist. I have in a life of quality and meaning for most surely agree that there is still much work found that there are only a few questions people. to be done before quality progressive that are meaningful. When I am asked supports are accessible to even a fraction to assess the supports being provided in I often receive calls from people who of people with severe disabilities across a living situation, I meet with the people work in segregated schools, institutions, the country. who are receiving the supports and group homes, or sheltered workshops. when appropriate, with their family The callers want to know more about I used to speak to groups about positive members. I ask the people receiving TASH. Almost without exception when behavioral supports fairly often. The supports, "Whose place is this?" You'd I tell them that TASH supports the full concept behind positive behavioral be surprised at how often people say, inclusion of people with disabilities in supports is that people act in ways that "the staff's," "the agency's," or "my general education classrooms, in their are challenging because they are frus- parents'." I like to find out who has a communities, and at work, the caller trated by their life circumstances - by the key to the house or apartment. You'd be assures me that the place at which he/ lack of impact they are able to have, by surprised at how often five or six she works adheres to these same prin- being expected to perform meaningless different people have keys - everybody ciples. activities, or by their inability to have but the person or people who live there. their needs met in other ways. Often, Then I want to know from the person A recent exchange of this kind got me when I would speak, people who receiving supports and from their family thinking, so I spent a little time on the worked in institutions or day wasting members what they would make programs would ask me how they could internet...it seems that TASH's values-- different if they could. Never in my full inclusion and self determination are implement the principles of positive years of asking has anybody said that nothing new anymore. A private behavioral supports in the environments he/she would like a fancier place or to institution, in New Jersey, well known in which they worked. I would tell move to a better part of town. When for the restrictiveness of its approach, them, you can't. You can wrap it up you ask people what they would change, describes itself on its web site as "family pretty, you can put whatever words answers revolve around the right to be in oriented and community-based." A make you feel better on your web site, charge; to be the one who makes plans; state institution in Virginia describes its but you can't provide good supports in bad places. Continued on page 20 PACE 3 73 TASHCONNECTIONS,MAY/JUNE 2001 GOVERNMENTAL AFFAIRS frees up funds for other social service that these facilities inform HCFA of any programs. It also would help the State deaths involving restraints or seclusion. avoid legal action related to the 1999 U.S. Supreme Court Olmstead decision, In addition, HHS is developing a rule which ruled that services for people withthat will set similar standards that will developmental disabilities and mental apply to children in certain non- illness must be provided in the least medical, community-based facilities for restrictive setting appropriate for their children and youth as required by the needs. Children's Health Act that was enacted by Congress in 2000. HCFA regulations The Wisconsin Developmental currently include standards for use of Disabilities Council estimates that restraints and/or seclusion in Medicare 15,000 seniors and people with disabili- and Medicaid funded placements in ties are on waiting lists for services in thehospitals, nursing homes and intermedi- state. ate care facilities for people with devel- opmental disabilities. If folks in Wisconsin could organize and THEY'VE GOT THE POWER pressure their legislature, so can "This action will help protect vulnerable in Madison, Wisconsin! TASH members and allies in their own young people in certain Medicaid states! facilities from the risks of serious injury Three weeks after 3,000 advocates, and death that are caused by the many with disabilities, packed This story was contributed by Dave inappropriate use of restraints," Secre- the Wisconsin State Capital Reynolds, Editor, Inclusion Daily Express, tary Thompson said. "By developing demanding an end to waiting lists for TASH: Public Policy in strengths and weaknesses and keys in on : Services provided in high quality, age- Action areas to be improved. appropriate and inclusive settings (What Continued from page 4 are your state's policies with regard to The Office of Special Education Pro- inclusive education for all children? Do grams will be using the Self-Assessments these policies enhance or pose barriers be effective immediately. Comments on to formulate what they are calling a for children and youth? Are students the amended language are encouraged "Risk Factor Data Chart" that will guidegiving up instruction and support and will be considered by HCFA. not only what areas of concern will be services to be included?) Additional details may be found at the monitored in each state, but also the following web address PAGE 5 TASH CONNECTIONS, MAY/JUNE 2001 7 5 2001 TASH ANNUAL CONFERENCE Tari Susan Hartman is President of pTans for the 2001 Conference EIN SOF Communications, a market- are really coming together! ing, public relations, and production We have already received over "IMAGING THE FUTURES company based in California. Tani 300 requests to present at this year's Susan has worked extensively on conference. Presenters will receive 2001 TASH Conference creating media opportunities for letters by the end of June indicating individuals with disabilities and has the status of proposals submitted. Anaheim, California most recently promoted Nickelodeon's This year we will feature over 30 November 14-17, 2001 "Pelswick," an animated series about focus areas.Formerly known as a 13-year-old boy who uses a wheel- strands, these focus areas will feature chair and attends his neighborhood both one and two-hour sessions that school, created by syndicated cartoon- were especially selected for their ist John Callahan. practical content and cutting edge information. Look for more structure John T Sanford, Esq., is Director of and details on the following focus the Office of Recipient Rights, areas in the July Conference edition Michigan Department of Community of TASH Connections: Health. John is a rousing advocate who is all about inclusion. He will Advocacy . Alternate Assessment share his insight about the structure of Autism Critical Ethical Issues society as it pertains to eliminating the Creative ArtsCommunity Living injustices and obstacles that face Critical PedagogyEarly Interven- culturally and linguistically diverse tion EmploymentEuthanasia up for this event when you register for and underserved individuals and FamilyFriendship Governmental the conference = it is a great networking families. -Affairs Guardianship Alternatives opportunity. If you are interested in Inclusive EducationLiteracy facilitating a roundtable discussion, or Jennifer Sheehy is the Director of Media and ImagesPost-Secondary presenting a Saturday morning poster Business Partnerships and Public EducationMulticultural session, there is still time to submit a Affairs for the U.S. Department of ParaeducatorsPersonnel Preparation proposal. Contact Kelly Nelson at Labor. Ms. Sheehy came to the Positive ApproachesRelated TASH at °IMAGING THE FUTURE"agent. Please be sure to reference the applicable ID Code to receive travel 2001 TASK Conferencediscounts. Flying with Southwest or ROUNDTABLE Continued from page 6 United also enables TASH to offer LUNCHEON scholarships for family members and individuals with disabilities to attend oin others future TASH Conferences, as we earn from 2001 TASH Conference Hotel one round-trip ticket for every 40 around the Information attendees that fly on the official confer- world to ence airlines. network at The conference hotel is the Anaheim the Marriott, located at 700 West Conven- Southwest Airlines is offering a 10% Roundtable tion Way, Anaheim, CA 92802, discount on most of its already low Luncheon Phone: 1-714-750-8000, Fax: 1- 714 -750- fares for air travel to and from the on Thursday, November 15th from 9100, or Marriott Worldwide Reserva- TASH Convention. You or your travel 1:00-2:15 PM. Enjoy a delicious box tions 1-800-228-9290. agent can call Southwest Airlines lunch while sharing stimulating Group and Meetings Reservations at 1- discussions on a topic that interests This year for the first time you can make 800 -433 -5368 and reference TASH ID you. hotel reservations for the TASH Confer- Code: R7304. Reservation sales agents ence directly on the web using the are available from 8:00 a.m. - 5:00 p.m. Tables will be marked with suggested following Group Codes: Monday -Friday or 9:30 a.m.- 3:30 p.m. topics for discussion and/or questions Single room code is CITCITA Saturday and Sunday in all time zones. to stimulate thought.If you have a Double room code is CITCITAB You must makeseservations five or specific topic that you would like to Triple room code is CITCITAC more days prior to travel to take discuss during lunch, please fax the :Qiiad room code is CITCITAD advantage of this offer. following information, or include with your registration form when you rriail Be sure to mention that you are making United Airlines is offering a 5-15% it in. reservations for the TASH Conference to discount on air travel to the TASH take advantage of these reduced rates. Convention. You or your travel agent I would like to participate in a can call United at 1-800-521-4041 to discussion Single Room - $140.00 plus tax book a flight. You will receive a 5% on: Double Room - $160.00 plus tax discount off the lowest applicable Additional Person $20.00 discount fare, including First Class or a 1 am willing to facilitate this 10% discount off of full fare unre- discussion. Please be advised that the above rates do stricted coach fares purchased 7 days in not include current room tax, which is advance of travel. An additional 5% 1 suggest the following person to 15%. The block of rooms held for the discount will apply for tickets purchased facilitate this-discussion TASH Conference is being held until at least 60 days in advance of the travel October 14, 2001. When the block is date. Discounts also apply to Shuttle by full, or after October 14th, rooms will be United and United Express. Please be available if space permits, however, they sure to reference TASH Meeting ID Participation in this event is-only may be at a higher rate. Number 594XG. Reservation agents are $20.00, which includes a delicious available 7 days a week from 7:00 a.m. box lunch. Be sure to register when to 12:00 midnight EST. you complete your conference Official Conference Airlines registration form. Watch for a complete listing of events Southwest and sessions for the 2001 TASH Questions? Contact Kelly Nelson at and United Conference "Imaging the Future" in 410-828-8274 x 105 or email will be the the next TASHConnections. [email protected]. You can email your official topic suggestions; fax them to 410- conference 828 -6706; or send a copy of this ad carriers this with your registration forril! year. You can make reservations directly io with the airlines, or through a travel PAGE 7 TASHCONNECTIONS,MAY/JUNE 2001 2001 TASH TECHS TASK TECH Pre-Conference, Full-Day Workshops Wednesday, November 14, 2001 1:00-6:00 p.m. TASH TECHs are 5-hour, pr-conference T-4 Designing and Implementing teachers, and public school teachers, as well workshops. There is an additional fte for Inclusive Curriculum: Teaching, as parents, the community; and other attendance to these workshops, and pre- Community and Standards professionals will be presented. registration is required to guarantee seating. Facilitated by Mara Sapon-Shevin, Mary Fisher, and Paula Kluth T- 8 Creating Successful Experience T-1 If Everyone Agrees This IS SO This interactive workshop will address for All Students Through Positive Important, Why DO SO Few Kids strategies for designing and implementing Behavioral Supports Have Friends? inclusive curriculum for heterogeneous Facilitated by Deborah Heeden, Barb Ayres, learners. Ways of incorporating state Facilitated by Carol Tashie and Zack and Susan DeLuke standard and IEP objectives within rich, This interactive workshop will provide Rossetti cooperative, multi-level curriculum will be participants with information on positive Most people agree - friendship and relation- explored and experienced by workshop behavioral supports. Key components that ships truly do make the world go 'round! participants. will be explored include: understanding your However, many parents of children with own attitude or posture; acknowledging the disabilities report that their sons and T-5 Literature-Based Language function of behaviors; gathering information daughters are lonely and lack meaningful about the student; and determining how relationships with classmates and friends. Intervention for Students Who Use difficult behaviors can be prevented. This workshop is designed to identify some AAC Facilitated by Amy Staples and Beth Foley Participants will create social stories, visual of the real barriers to friendship and spark schedules, and visual timekeepers that can be discussion on the strategies to support This session will provide participants with sued with the in individuals they support. meaningful relationships for all children and current research findings regarding language youth. Through the use of the video and literacy development for AAC users, a "Voices of Friendship" the participants will framework for implementing literacy T-9 Exploring the Role of Spirituality learn about the relationship of five teenage instruction, and an array of strategies for and Disability girls and the lessons they have taught us on promoting interaction during literacy-based Facilitated by Kathy O'Connell, Bonnie how to facilitate real friendships. activities for elementary through high school Shoultz, Maureen Keyes, and Ron Taylor students. This interactive workshop will explore T-2 Using Internet Tools to Enhance various components of how spirituality can Collaboration and Provide Training T-6 Partners in Justice be an influential part of life for people living and Technical Assistance to Service Facilitated by Debbie Gilmer, Diane Nelson- with disabilities. Specifically, this session Providers and Families: A Hands-on Bryen, Helen Bailey, Alan Hammond, Alan will explore disability as a spiritual process, Kurtz, and Kathy Son the power of meditation, imaging the future Demonstration and spiritually centered leadership. Facilitated by Richard Kiefer-O'Donnell Every day people with mental retardation come face to face with the criminal justice This workshop will demonstrate and train system - as victims of crime, witnesses to T-10 Civics 101 participants in how to use video conferencing, threaded discussions, chats, crimes and as people accused of crimes. In Facilitated by Marcie Roth and Jamie this interactive workshop for criminal justice application and file sharing, whiteboards, Ruppmann personnel, attorneys, advocates and others, and online broadcasts (webcasts) for team This critical session explores how every one the Maine Partners in Justice team will share collaboration and provision of technical of us can achieve active, powerful participa- strategies for getting relevant training to the assistance at a distance. tion in the democratic process. An overview front lines. Participants will receive a CD of how government works and the places T-3 Changes in Latitude, Change in with the Maine version of the curricula. where activists can have the greatest impact Attitude: The Essential Role of on influencing social policy will be T-7 Creating Inclusive Childcare discussed. Inclusion Facilitator in Promoting Settings Full Inclusion Facilitated by Pam Miller and Peggy Fiore T-11 Supported Living: It's not a Facilitated by Cheryl Jorgensen This workshop will provide information on program...It's your life! For schools to become inclusive, the role facilitating the collaboration of families, Facilitated by Scott Shepard, Cheryl and title of special education teacher must childcare professionals and other education change to that of Inclusion Facilitator. This Mayfield, Keenan Inouye, Jose Perez, Pam and service agencies to successfully include full day workshop will present examples of Aiona, Carlos Cueva, Jill Martin, Igor children of all abilities in community the beliefs and skills necessary for support- Veremeykin, Ronda Michaelson, and Andre settings. A variety of strategies offered by ing school communities to embrace Vargas certified Project ACT teachers designed to inclusion. educate child care providers, Head Start Continued on page 9 PAGE 8 78 TASH CONNECTIONS, MAY/JUNE 2001 2001 TASH TECHS TASH TECH Pre-Conference, Full- At the request of our members, TASH is trying 1-3 Implementing Social Coaching Dag Workshops something new this year. Institutes are full-day, Facilitated by Paul Selby Continued from page 8 interactive workshops that are available to Across the country, many individuals with conference attendees who register for the fill significant support needs are now living and three-day conference at no additional charge. working in the "community". Yet, too often, A panel of people who receive services and Others are welcome to register and attend a full- their supports are provided following the old support staff will share their stories about day Institute as an "Institute Only" registration segregation policies and procedures. This what supports they need and how those at the rate listed on the registration form on full day institute will present strategies for supports need to be provided to keep people page 10. social coaching in the community. safe and active in their communities. A brief overview of what Supported Living Services 1-4 Cultural Brokering: Application of can and should provide will be discussed. Full Dail Institutes a Model to Provide Supports to Individuals and Families from Diverse T-12 Creating and Sustaining Positive Saturday, November 17, 2001 Communities Partnerships with Paraeducators 10:00 a.m.4:00 p.m. Facilitated by Paula Sotnik Facilitated by Deborah Tweit-Hull, Ann For a recent immigrant with disabilities, the Halvorsen, Pamela Villalobos, and Dona challenge of obtaining supports is often Meinders I-1 Critical Pedagogy and Inclusion: arduous. The Cultural Brokering Model Paraeducators play a pivotal role in many Understanding Our World in Order to provides service providers with a replicable inclusive classrooms, yet there are few Change It framework to develop effective support opportunities for professional development Facilitated by Jacqueline Thousand and Don strategies by examine all factors in a or training. This interactive workshop will Cardinal sequential and participatory manner. present strategies and share materials Critical pedagogy explores the ways in whichParticipants will apply the Cultural developed to train, mentor, and evaluate change is made in people's lives (all of our Brokering Model to analyze and better serve paraeducators to provide effective supports lives!). These ways don't necessarily fit with individuals with disabilities and families in inclusive classrooms. traditional parent/child, caregiver/service from diverse ethnic, linguistic and cultural recipient, or teacher/student models of backgrounds using presentation, small group T-13 Perceptions of Spanish Speaking services. This session will encourage and case study analysis application. Families Regarding Inclusive Educa- participants to challenge traditional ways of tion in Southern California thinking about their roles as people with 1-5 Supporting Students with Autism disabilities, staff members, parents, teachers, in General Education Classrooms: Facilitated by Mary Falvey and Ben Adams behavioral' specialists, or other professionals This workshop - to be presented in Spanish Lessons Learned and will encourage participants to rethink Facilitated by Michael McSheehan and Rae with interpreters - will present the views and some of the most basic assumptions that Sonnenmeier perceptions of Spanish speaking families as have guided the field. Critical pedagogy Learn about New Hampshire's statewide they share their experiences with inclusive suggest new ways of thinking and acting that system change efforts to support students education in South Central Los Angeles. will result in greater opportunities for with autism in general education classrooms. Participants will look at the meanings and mutually respectful relationships and social Examine the content covered in the varied beliefs that led them to make the decision to justice. Through dialogue we will address training activities and the process for educate their children, who have severe two questions. (1) How does understanding facilitating and sustaining change. Partici- disabilities, in the general education class- our world create the possibility of changing pate in skill building activities for profes- room. Strategies in collaboration and our experiences of the world we live in? sional and leadership development. problem solving will be shared. (2) What do we need to understand about our world in order to change it? Join us for T-14 Transition as it Related to the this exciting, interactive day. 1-6 Stepping Out: A Game of Life that Young Person with a Disability Goes to the Heart of What it Means to Facilitated by Marilyn Barraza and Clare 1-2 Families Planning Together be Human Miller Facilitated by Shelley Dumas, Mary Lou Facilitated by Sally Sehmsdod; Chris Bily, This workshop is designed to provide you Bourne, Amanda George, and Sherrie Erin Bily, and Sherry Lookabill with an awareness of transition as it relates Anderson Stepping Out explores the Art of Dialogue, to the young person with a disability and of In this full day institute, families will learn a Person Centered Planning, and Diversity. the opportunities that these life changes can step by step process for beginning develop- Participants with and without disabilities provide. Participants will engage in an ment of an "essential lifestyle plan" with collaborate to construct a game and play it. exercise that enables them to identify the their family members as well as to identify Imagine a giant board game with a path that important values related to the decisions to methods of obtaining on-going planning begins with dreaming, moves through be faced about the future and how values assistance. The plans created during this full confusion to reflection, creates a space for might impact decisions. Finally, each day workshop will be used to help ensure the calling a circle of friends, and finally reaches participant will draft a personal definition of presence in life of what's important to and its goal of contribution to the community and full inclusion. what a quality life might look like, the first for family members. 9 step in planning for the future. 1 Continued on page 24 PACE 9 TASHCONNECTIONS,MAY/JUNE 2001 ConferenceINTERNET /Is TASH Office Use Only 11SF RegistrationOrg oust (Esto forma es disponible en espaliol) Reg Init Instructions for filling out this form: Mail: TASH, 29 W. SusquehannaAvenue, Suite 210, Baltimore MD21204 1.Pleases print and fax or send this form. Fax: (410) 828-6706 2.Fill out one form for each person attending Questions? 1-800-482-TASH (8274)or 410-828-8274; 3.A form of payment must accompanyyour registration TDD: (410) 828-1306 Please make checks payable to TASH. Email: registrationAtash.org Website: www.tash.org TASH Federal Id # 51-0160220 ConferenceParticipant: First Name: LastName : Badge Name: Organization: Address: City / State: Postal Code: Country Thisaddress is [ ] home [ ] work [] school [ ]other Work Phone: HomePhone: Fax: E mail: 61'V Accommodationsneeded: Re ,i o H [ ] Individual Registrant $239 Current TASHMember # [ ] Family Member / Or Person with a Disability $ 79 (*Personal assistantsmust register at the same time as [] Personal Assistant $ 50 individual forwhom they are providing support to attend [] Student $ 159 conference activities) H One day only OThurs 0 Fri $149 Registration Category TASH Chapter Only or Non-Members Relister andJOIN International TASH NOW!! [ ] Individual Registrant $369 $327 [ ] Family Member/ Or Person with a Disability $155 $124 [ ] - Personal Assistant (*see note above) $50 $95 [ ] Student $259 $204 [ ] One day only OThurs Fri $199 $237 1. Enter Registration Cost To join your chapter also please add $15.00 AdditionalRegistration Discounts A. Team Discounts - Groups of 5or more registering Subtract Discount Here --> together (must be in the same envelope) $20.00 per person, per discount B. Early Bird - registrations received before Sept.1, 2001 Round Table Networking LuncheonThursday, $20.00 per person 1:00-2:15 PM (you must purchasea ticket in advance, and please be sure to note any special diet requests) Add Luncheon Fee Here --> Pre-Conference Workshops 1:00 - 6:00 PM, Wednesday, November 141h(Registrationis in addition to the conference fees) Saturday Institutes, 10:00 AM - 4:00 PM November 17th (Ifyou registeredfor the Fullconference you can attend one of the Saturday Institutes at no charge. If you would like to signup to attendan InstituteONLY - the rates below apply. Please review the TASH TECH Workshops and Institutedescriptionson Rates for TECHS and Institutes: pages 8-9. Be sure to mark the number ofyour first and secondchoices. TASH Member 555.00 0 I plan toattend the TASH Chapter Leadership Day (no charge) Non-Member 0I plan to $85.00 attend a TASH TECH lst Choice 2"d Choice Individual w/a disability or 540.00 0 I plan toattend a Saturday Institute1st Choice 2nd Choice Family Member Enter Total AdditionalFee Here --> $ I would like to make a donation to supporta self-advocate/parent$5 $10 $15 Payment Terms: 0Check ()Purchase Order O Visa 0MasterCard ()Discover TOTAL AMOUNT ENCLOSED $ Registration will not be accepted withoutpayment by check, purchase order, or Name: credit card authorization. Payment must be in U.S.Funds only. A $25.00 fee will Card # Exp, be deducted from all requests for refunds received beforeOctober 15, 2001. No Signature: refunds after that date. $25.00 fee for returnedchecks or unauthorized charges. ,-, PAGE 10 (1 U TASH MECUM MAY/JUNE 2001 SUPPORT THE WORK OF TASH TFIR's work is dependent on the financial support of our members. We TAM The Action Starts Mere wish to acknowledge the generous assis- tance of our newest lifetime member While it's true that the acronym TASK doesn't really stand for "The Action Starts Here," TASK members know that it is TASH's clarity of vision and wilting. Karen Eimbrieh- Watertown. NM ness to take action that distinguishes us from many other groups. Lifetime membership entitles you to full international and chapter member benefits for your lifetime. The cost can be remittedover Throughout our now 26-year history, TASH has led several monthly payments. the way to assure that: If you are interested in becoming a lifetime member of TASH, the rights of people with disabilities are please contact Rose Holsey at 410-828-8274, ext. 100. protected; progressive research is assured the support + + and audience it deserves; and, individual and legislative advocacy is Thanks. too. to the gracious donations of the t;) available whenever needed. following individuals: We need your help to support and sustain the critically important work that TASH has begun. Zany Ray Griffith Please consider a contribution or a plan for giving Yeddi Leiden that will secure the future of TASH's daily action Zara Pankaahie toward progressive supports and inclusive lives for all people with disabilities. Elisabet Van Spam Gifts may be made by check or credit card. All gifts -- regardless of the amount-- will be greatly appreciated. No amount is too small. Do also consider: The University of Washington Contributions of stocks or securities Remembering TASH through your will or living Graduate Program trust Beneficiary designations of life insurance or trains teachers to serve the needs of pre-K pension plan proceeds through secondary pupils with significant Gifts with retained income for you or others disabilities.Emphasis on databased, system- atic instruction referenced to the requirements Charitable gifts are tax deductible. To discuss your options for making a donation to TASH, or to of natural school and community settings. request a copy of TASH's Charitable Giving 3brochure, please contact Nancy Weiss at 410 -828- M.Ed. degree plus initial teacher certification 8274, ext. 101. possible. Thank you for your assistance in securing For additional information, contact Dr. Felix the rights of all people to five and participate Billingsley, Area of Special Education, 102 successfully in the community! Miller Hall, Box 353600, University of Washington. Seattle, WA 98195, (206) 543-1827 or send an e-mail to dN2,, ett [email protected] PACE 11 81 TASHCONNECTIONS,MAY/JUNE 2001 EQUAL HOUSING OPPORTUNITIES DRACH has six major national goals it policy or procedure if the change will works toward to end years of discrimi- allow you equal access to and full use of nation, segregation and isolation in a housing program? housing for people with disabilities. They are: e)You have the right to request reasonable modification to any and all Ensuring stronger enforcement and housing if the modification will allow full compliance with the civil rights you full use and access into the home? housing laws Ending segregated housing for e)You have the right to be treated with people with disabilities respect and dignity and to access any Eliminating the mandatory linkage home you want, free from discrimina- of services from housing tion? Increasing tenant-based rental assistance Fair Housing Rights Developing homeownership opportunities What are the federal fair housing Unlockinga Promoting on a national scale the laws? "visitability" concept or basic accessible universe of housing There are three major federal civil rights IP EP laws that provide protection from opportunities DRACH has identified nationally the discrimination for people with disabili- number one barrier to equal housing ties in housing. Note that some laws opportunity: a lack of understanding of only apply to housing that is subsized M. and compliance with the fair housing with funds from the federal government. laws. Many federal and state programs BY BECCA VAUGHN for too long have encouraged "manda- tory service participation" (i.e. in order to have a roof over one's head, one must(Thefollowing Federal civil eat the meals provided or accept the rights laws prohibit people with disabilities face many case management offered) in blatant discrimination against obstacles in their daily lives. In violation of the Fair Housing Act. recent years, one of the central people with disabilities in Many builders are not in compliance obstacles that the grassroots disability with the accessibility requirements and housing: activist movement has focused on has much of the housing industry does not been barriers to accessible, affordable 1. Fair Housing Amendments Act understand granting reasonable accom- (1988) and integrated housing. In 1994 the first modations and, in fact, claims not to national grassroots housing justice 2. Section 504 of the Rehabilita- know anything about civil rights tion Act of 1973 (this law applies coalition, the Disability Rights Action housing laws. Coalition for Housing (DRACH), was only to federally funded projects) formed. Comprised of people with 3. Americans with Disabilities Act (1990) -- Titles II and HI disabilities many of whom lived in Did you know... public housing the coalition's primary 9 purpose was to address discriminatory housing programs, most of which the 'e) All new construction of multi- Fair Housing Amendments Act U.S. Department of Housing and Urban family housing must contain 7 features Development (HUD) operated. While of accessibility? (These features are In 1988, the Fair Housing Act (Title VIII listed later in this article.) there were other groups that claimed to of the Civil Rights Act of 1968) was represent people with disabilities, amended to expand protections against e)It is illegal for anyone renting or DRACH was the first group to meet discriminatory housing acts to people selling housing to ask if you have a with the Housing and Urban Develop- with disabilities and families with ment (HUD) Secretary, delivering a disability, or to inquire into the nature or children. This act is referred to as the passionate report of the struggles for realseverity of your disability? Fair Housing Amendments Act housing from the people HUD's oppres- sive policies and programs affected. e)You have the right to a reasonable accommodation in any rule, practice, Continued on page 13 PAGE 12 TASH 0 0 CONNECTIONS,MAY/JUNE 2001 EQUAL HOUSING OPPORTUNITIES Unlocking a milverse of Additional protections for people with opportunities in housing disabilities include: Continued from page 12 New Construction Requirements 'F) Prohibiting inquiries as to severityor Under the Fair Housing Amendments nature of disability Act for Multifamily Dwellings Built Right to reasonable accommodations After March 1991 (FHAA), and applies to all housing and Right to reasonable modifications housing-related activities, including the Accessibility requirements for new 1. Accessible entrance on an accessible route real estate industry, lending institutions multifamily dwellings (4 or more units) and providers of homeowners insurance. 2. Accessible public and Except in very few situations, the Fair common use areas 3. Usable doors Protected Classes. Housing discrimina- Housing Amendments Act applies to all tion is prohibited on the basis of: housing, private or federally-funded 4. Accessible routes into and (subsidized). People with disabilities through the dwelling units 5. Light switches, electrical Race or color carry with them their civil rights and fair National origin housing protections in any housing outlets environmental controls Religious preference situation. accessibly located Gender 6. Reinforced walls for grab bars Familial status 7. Usable kitchens and bathrooms Disability 1 The general protections include such s For example if you have been told things areas as: like, "we don't rent to disabled people," "it will cost you more in rent sinceyou ®Refusal to rent, sell or negotiate for 1 use a power wheelchair," or have been housing I . asked such questions as, "can you live ®Falsely denying that housing is for sale - independently," "what kind of disability or rent do you have," how does that makeyou ®Making housing unavailable act," you have been denied your fair ®Providing different housing services or housing rights. facilities ®Blockbusting (steering people of Exemptions from the FHAA. There are Let's say you want to rent a mi.-mil, single similar status away from or into certain some exemptions to the Fair Housing family home in a neighborhood thatyou neighborhoods or programs) Amendments Act. Among these are: like because of the tall trees and quiet ®Discriminatory property appraisals/ environment. You call to look at the insurance denials Single-family housing sold or rented home and when you get there (using ®Unfair mortgage lending/loan denials without a broker your wheelchair) the broker says it's not ®Setting different terms and conditions Owner occupied buildings with no accessible and denies your right to look in sale or rental of a dwelling (i.e.: more than 4 units at the home even if you are able to tenants with power chairs pay higher ® Housing operated by private clubs arrange a way to get in. You have been rents, or people with disabilities are and organizations (i.e. those receiving discriminated against. Anothef example required to receive meals provided) no federal funds) would be if you request to build a ramp ®Imposing different selection criteria in ® Some senior-only buildings exempt at the front door and the landlord/ housing applications (i.e. tenants with from familial status/age manager says you can't build one. This disabilities must be able to live indepen- is illegal and you have been discrimi- dently) The FHAA also contains new construc- nated against. It is important to note ®Advertising or making statements that tion requirements for all multifamily that with regard to private housing not indicate preference based on protected dwellings built for occupancy after funded with federal money, you will status. March 13, 1991. All units in a building need to pay for any needed modifica- ®Threatening, coercing, intimidating or with an elevator and all ground floor tion. interfering with anyone exercising his/ units must be built with 7 basic features her fair housing right. Retaliation is of accessibility: Knowledge is power and knowing your illegal! rights will help others understand their responsibilities to comply with those rights. Continued on page 14 PAGE 13 TASH CONNECTIONS, MAY/JUNE 2001 EQUAL HOUSING OPPORTUNITIES Unlocking a universe of accommodation or modification that is a disability and are needed in order for opportunities in housing requested. that person to have equal access. Such Continued from page 13 structural changes are usually referred to Section 504 requirements are in addition as reasonable modifications. to those of the Federal Housing Amend- It is important to remember that the ments Act for federally funded pro- individual must request whatever grams. accommodations and modifications she Section 504 of the Rehabilitation Act of or he needs. In most cases, the em- 1973 Americans with Disabilities Act ployer, school or business must pay for the accommodation or modification. In Section 504 covers all federally funded Title III of the Americans with Disabili- housing, only subsidized housing housing units, programs or projects. Theties Act (ADA) applies very narrowly to providers must pay for any modifications law is very clear: when it says all, it housing. The ADA does not cover to apartments and common areas. means all, with no exceptions! individual housing units (these are Private housing- providers need not pay Examples of federally funded programs covered by the Federal Housing Amend- for the modifications, but they must are: ments Act and/or Section 504 if allow the tenant, at his or her own federally funded), and only affects public expense, to make the needed modifica- Public Housing Authorities (PHAs) use areas and rental offices of multi- tions. Section 8 housing programs family projects. Section 811 and 202 programs The term "reasonable" does not mean Programs serving homeless For example, only the areas within an "sensible" or "acceptable." "Reason- populations apartment complex which are open for able" means that the action requested by Shelter Plus Care public use must be accessible according the individual with a disability: Community Development Block to the Americans with Disabilities Grant (CDBG) recipients and sub- Accessibility Guidelines. This would does not cause an undue financial recipients apply to real estate offices, banks and burden; All Rural Housing (USDA) projects other housing broker offices. Generally, *does not cause a basic change in the ADA applies to situations other than the nature of the program; and Section 504 federally funded projects are housing such as employment, public is technologically possible prohibited from discriminating against accommodations, transportation and any person with any type of disability, communications: "Reasonable accommodation/modifica- and are required to assure equal partici- tion" is a central tenet in all disability pation in the housing program. 4. 4. civil rights laws, not just in housing. The following sample procedure for request- Section 504 Reasonable accommodations are a ing accommodations/modifications ."4;30WORE=NOWINNA, accessibility 1101WilM.VAIOLW. :4111, /WM. Alk`To. major key to unlocking a universe of refers to a housing situation, but you can requires all "TaVal MOM.gXeCO opportunities in housing and beyond. use the same procedure in employment, WOW, 1101131e VII:PalsoweVEY units built vasa,a:010,-W ,vinsalk Getting the type of housing you want transportation or public accommoda- or reno- may require that you exercise your tions if you need an accommodation. vated to rights. contain at Suggested Procedure for Requesting an least 5% A person with a disability may request Accommodation/Modification fully wheelchair accessible units, 2% of changes in any rule, policy, procedure or the units must be accessible to individu- service if the changes are related to a Start by providing in writing the follow- als who are deaf or have hearing disability, and are needed in order for the ing information (examples are given impairments, and 2% of the units must person to have equal access to housing, following each item ). be accessible to individuals who are services, employment, stores, schools, or blind or have visual impairments. They the community. Such changes in 1. Indicate that you qualify as an are not to be the same unit. There must policies or services are usually referred individual with a disability as defined by be at least one unit with accessibility to as reasonable accommodations. the civil rights laws. Never reveal the features to accommodate each of these nature or severity of your disability. types of disabilities. A person with a disability may request Example: "I qualify as an individual with a that structural, or other physical changes disability as defined by the Fair Housing In addition, federally funded housing be made in a building, apartment, or Act." providers must pay for any reasonable workplace, if such changes are related to Continued on page 15 PAGE 14 84 TASH CONNECTION& MAY /JUNE 2001 EQUAL HOUSING OPPORTUNITIES Unlocking a universea plaint with your local or state human accessible and integrated housing opportunities in housing rights commission, the Department of choices. There are two types of Section 8 Continued from page 14 Housing and Urban Development assistance. The first is a project-based (HUD), the Department of Justice or voucher program (an existing building any other governmental body which the housing provider owns and oper- may have jurisdiction over your area of ates). The second is a tenant-based 2. Describe the policy, rule, or service complaint (employment, education, voucher program (the tenant finds his/ that is problematic for you. Example: housing, etc.). her own home). Both programs are "Your housing program has a 'No Pets' administered through public housing policy." Fair Housing Complaints agencies, such as a housing authority or state housing finance corporation. You 3. Briefly explain how the policy inter- If you believe your rights have been must be income eligible and apply feres with your needs/rights. Example: violated, you may want to file a fair through an agency which operates a "I depend on a service dog for assistance." housing complaint or file a lawsuit in a Section 8 program. You can get a listing Federal or local court. You may also of such agencies from the HUD website 4. In very clear language, fully describe want to contact an advocate who can Unlocking a universe of determining your eligibility. Provide opportunities in housing them with alternative credit history that Continued from page 15 is positive such as utility bills or rent receipts that will document that you are financially responsible enough to own a South home. Access Modification Funding Coast ESD- Demand that housing managers treat Many states and local governments you with respect and dignity, extending operate programs to assist low income to you the full fair housing rights to Region #7 people with disabilities in paying for which you are entitled. If a manager necessary modifications to their homes. asks about your disability, tell him/her Ask about this option. Cities and states it's none of his/her business, that it's Teachers needed to work can use federal Community Develop- private, and that asking violates the fair with children with ment Block Grant and HOME funds for housing laws. You cannot be charged such programs. If your city or state extra rent because you use adaptive significant disabilities. doesn't offer such a program, ask them equipment. You do not have to pay a to establish one. Call DRACH for more pet deposit on any animal that provides Public schools on beautiful information on this advocacy action. you with emotional support or performs Oregon Coast have immedi- a service, as long as the need for that ate openings for innovative, Homeownership Options support is related to your disability. You have the right to ask for an accommoda- collaborative teachers with You have the right to apply for a loan to tion in any rule, practice, policy or licensure and education/ purchase a house, the right to be shown procedure if it will allow you to live in a experience with students potential homes, and the right to request home of your choice. with significant disabilities. reasonable accommodations in order to access/qualify for a home loan. Many We must stop the practice of funding states, banks and cities have First Time housing projects which segregate and Prefer skills in augmenta- Homebuyer programs. Ask local isolate or dehumanize people with tive/alternative communica- housing lenders and city offices what disabilities. No more mini-institutions, tion, behavioral analysis type of programs are available. no more oppressive, disability-specific including communication programs, no more "special needs" (i.e., functions, positive behavior Fannie Mae (1-800-732-6643) and the different from everyone else) housing. It National Home of Your Own Alliance is time for our nation to stop the dis- intervention,.supports for (1-800-220-8770) have many resources crimination against, and the exclusion of inclusion, functional and helpful guides available. Additional millions of human beings from real assessment/instruction, housing advocacy resources are listed housing opportunities solely because curricular modification, and beginning on page 25 of this issue of they have disabilities. We must stop transdisciplinary service TASH Connections. viewing disability as a crime and work to assure equal rights and justice for all. delivery. Conclusion... and Beginning For additional information please contact Send resume along with Getting the home you want sometimes DRACH: letter of interest to: takes a willingness to defend your rights for accessible, affordable housing. Disability Rights Action Coalition for Housing Remember, you have the right to request 501 SW Jackson, Suite 100-B South Coast ESD an accommodation even to banks or Topeka, KS 66603 1350 Teakwood other lending institutions if it will 1-800-443-2207-toll free Coos Bay, Oregon 97420 give you equal access into the program. 1-785-233-0779-fax and voice Telephone: 541-269-4520 An example would be if you have some 1-785-233-4572-voice and TTY negative or questionable items in your e-mail: [email protected] TDD: 541-269-1611 credit history which were directly caused E-mail: by your disability (medical bills, equip- g+ [email protected] ment expense, lost wages due to injury). You can ask that the lending institution not consider that credit history when J PAGE 16 86 TASH CONNECTION& MAY/JUNE 2001 A NEW WAY OF THINKING ABOUT HOUSING CHOICE In the disability community, we are but as an important part of a full range used to appalling statistics. You of housing choices. They expand know the kind, those depressing community living options and foster facts and figures that remind us that integration of people with disabilities people with disabilities continue to live into their neighborhoods. as second-class citizens. Housing statistics are among the worst. The Section 8 3-rousing Choice Toucher is avalfab& by Last year, the House Subcommittee on application now! Housing and Community Concerns The time to apply for a Section 8 stated that while the overall homeowner- "mainstream voucher" is now HUD is ship rate is approximately 67% nation- making over $54 million for approxi- wide, the average homeownership rate mately 1,900 5-year housing choice for African-Americans is in the 40th vouchers available to public housing percentile and Hispanics register, in agencies (PHAs) and nonprofit disability some communities, as low as the 20th organizations. With the vouchers and 30th percentile. covering as much as 70% of area fair market rent, people with low-incomes But what about people with disabilities? and with disabilities can afford a better The National Home of Your Own Expandingour quality of housing when they have a Alliance reports that less than 5% of voucher in hand. Now is the best time people with disabilities who receive Thinkingon to assure that a -Section 8 housing choice Social Security Income (SSI) benefits voucher is available to every person with own their own homes. 3-fousing Choice a disability in your community who needs one by applying for the main- There's-more..._A 1998 national Louis stream vouchets. The application Harris poll commissioned by the BY CHARLENE DWYER deadline is July 20th. Contact your State National Organization on Disability and and/or local public housing authority to found that 34% of people with disabili- JERRY VOGT establish an application partnership. If ties have annual household incomes of you are a qualified non-profit, consider $15,000 or less. Meanwhile, the Depart- bedroom apartment for less than 50% ofmaking an application on your own. ment of Housing and Urban Develop- his or her income. For more information on how to apply ment (HUD) recently reported that rent for the vouchers, log on to http:// prices increased more than twice the rate The housing crisis for people with www.hud.gov/adm/grants/nofa/ of national inflation in both 1997 and disabilities is both alarming and escalat- grpsec8.html 1998. In 2001, HUD reported that their ing. But even amidst the most negative housing research identified very low- trends, there is good news. New and income households that included adults expanded opportunities in affordable, Owning a home is about choos- with disabilities as a segment of the accessible housing choice are emerging. ing where you live and having population having some of the most They range from a concerted effort by the opportunity to live on "a significant housing needs of any group HUD to increase Section 8 vouchers tree-lined main street of in the United States. targeted for people with disabilities and America." But the real those who are home-and-community- strength of homeownership as Not surprisingly, national housing based-waiver (HCBW) eligible, to home a housing option is that it is not advocacy groups also verify that lower- mortgage payment programs subsidized limited to that. Homeowner- income families are being continually with vouchers. The scope is broad, but ship is also about more people -priced out of the nation's safe and the focus is clearly on low-income with disabilities investing in affordable rental market. In "Priced Out people with significant disabilities. HUD their housing and capturing in 1998," the CCD (Consortium for makes the programs available; State and their fair share of the savings Citizens with Disabilities) Housing Task local public housing authorities and in U.S.- owned homes so that Force reported that there is not a single people with disabilities, their advocates, they can live in the "equity- housing market in the United States and their service organizations make lined main stream of where a person with a disability receiv- them a realityif they choose to do so. America." ing SSI benefits can afford to rent a modest efficiency apartment, and These new initiatives hold great promise nowhere can an SSI recipient rent a.one- not as the solution for everyppr, Continued on page 18 PAGE 17 TASHCONNECTIONS,MAY/JUNE 2001 A NEW WAY OF THINKING ABOUT HOUSING CHOICE Expanding our Thinking The same rental voucher that pays as much as 70% of area fair market rent for State and local housing 4\ on Housing Choice authorities can assist housing Continued from page 17 a user can now be sent to the bank to pay a portion of a monthly mortgage. organizations to develop Combined with other low-income creative ways of using the new homebuyer assistance programs such as Section 8 homeownership discounted interest rates and downpay- option to advance home buying 'The new Section 8 Housing ment grants and loans, the value of the by people with disabilities. Choice "Homeownership Option"monthly voucher will significantly Housing authorities and their Toucher increase the family's home purchasing disability partners are making It's also a good time to aggressively power. The voucher is a new and it happen across the country. expand both our thinking and efforts to important piece of the affordability include homeownership as a viable puzzle for homebuyers. option in the spectrum of affordable, The Section 8 homeoWnership option is accessible housing choices. Why? But what about the lending institutions available and the pieces of the lending Because not only can "purchasing" your where high incomes, big down paymentspuzzle to support the program are falling housing rather than "renting it" expand and low housing spending ratios are into place. Great news! But the "oppor- choice and maximize control, but it also favored? Fortunately, some mortgage tunity" doesn't materialize into the provides an avenue to improve and lenders are taking the time to learn how "reality" of a home until a PHA (public stabilize housing. many with disabilities live -- with fixed housing agency) adopts the program and and capped incomes, limited credit offers it, along with a Section 8 housing Homeownership also happens to be our histories and cash assets and sometimes choice voucher, to income-eligible nation's #1 vehicle for personal asset with their housing assets held in pro- individuals with disabilities. There's no accumulation. Congress reports that tected trusts. Some of these lenders are way around it, there's still a lot of there is more than $4.5 trillion in equity also beginning to accept how people infrastructure and partnership work to and savings in owned homes in the U.S. with disabilities as a group prioritize do. Using "subsidized housing" as a means their spending, putting more of their to gain equity and build "personal resources towards their housing than Even with a brand new program and a assets" has never been a widespread their non-disabled neighbors. long and steep learning curve, there are option. Now it is. model Section 8 homeownership Mortgage products and underwriting pioneers among us. Using HUD demon- flexibilities designed to accommodate stration authority, the Colorado Depart- families who rely on disability benefits ment of Human Services Supportive as a main source of income are available Housing and Homeless Program through Fannie Mae's HomeChoice (SHHP), a HUD authorized housing mortgage guarantee program. As a authority, implemented the home- national leader in promoting home- ownership option on a statewide basis ownership among people with disabili- for people with disabilities. SHHP has ties, Fannie Mae is finalizing its mort- partnered with non-profit agencies gage underwriting for the new Section 8 connected to the disability community to homeownership program. provide local outreach and support to homebuyers. They have already used the Last year, HUD supplied all of their program successfully to assist qualified FHA lenders with guidance on provid- Section 8 families in buying homes. Be ing underwriting flexibilities to accom- sure to read the Section 8 homeowner- In its most simplified form, the brand modate persons with disabilities in ship "success stories" at the end of this new HUD Section 8 homeownership qualifying for a mortgage. With leader- article. As a willing and able pioneering option allows a State or Local Housing ship from HUD and Fannie Mae, housing authority, the Colorado SHHP Authority to create a "homebuyer" lenders interested in providing market earned a HUD national "Best of the option for their housing choice voucher rate mortgages to low-income Best Practices" award in 2000 for paving families. For a qualified homebuyer homebuyers with disabilities may not be the way for the rest of us. family under the new program, the far behind. There are lenders who are monthly voucher subsidy, traditionally taking the time to get to know people used for a rent payment, can be used with disabilities, and these same lenders instead towards a mortgage payment. are providing new access to mortgage credit. Continued on page 19 PAGE 18 TASH CONNECTIONS, MAY/JUNE 2001 A NEW WAY OF THINKING ABOUT HOUSING CHOICE Expanding our Thinking To find out more about the HUD on 3-(ousing Choice Homeownership Program and specialty Continued from page 18 mortgage products for people with disabilities, go to the national Home of Your Own Section 8 website at Expanding aur Thinking About the authors: Charlene Dwyer is Executive on Housing Choice Director of EBTIDE, Inc. in Wisconsin and a member of the National Council on Independent Continued from page 19 Living Housing Subcommittee. Jerry Vogt is the Statewide Director of EBTIDE's Homeownership Program. As a person with a significant physical disability and a man before his time, Jerry was a founding member of his condominium associa- tion 16 years ago, and made his accessible home Real People, Real Success! Stories from the affordable with sweat equity. "Because of my quadriplegia, I couldn't hammer nails or paint Colorado Supportive Housing and the walls, but I could make left to right brush Homeless Program CSHHP) homeownership strokes and I stained lots of baseboards, ordered construction supplies and kept the accounting program records." Today he owns his home in Madison, Wisconsin outright. BY SAM DESIATO For more information on EBTIDE's homeownership partnership programs, visit Tim and Lisa Tim and Lisa divide the household chores and keep things well organized so to be able to choose to do the things that all the usual tasks of a homeowner are accomplished. Tim summed up one wants, when he/she wants to do his feelings about homeownership in a recent Denver Post article, when he them. This is what makes for good said, "We love it. We're staying put." Lisa expressed her sentiments when she places, and good supports can only be said in the same article. "We're staying here for the rest of our lives." provided in places that support the kinds of freedoms that we all want and Marcene expect for ourselves. Is an organization like TASH still Sometimes buying a home doesn't go as smoothly as you would like it to. needed? The answer is incontrovertibly Marcene ran into a number of hurdles before she could move into her $97,800 yes. As Doug Guess, one of the duplex in Denver. Some of these challenges were financial in nature, and founders and original board members some were related to her need for modifications to the home so it would be of TASH recently said, "TASH has fully accessible. Perseverance on the part of Marcene and all those who played a major role in helping persuade assisted her through the process helped get her past the threshold and into her various states to close institutions, develop home. And perseverance pays, according to Marcene. community-based services to replace them, and provide educational opportunities in "I think that this is wonderful," she said with a big smile. _"Because I'm in a public schools for students with significant wheelchair, I didn't think anything like this would be possible for me. Owning disabilities." TASH must continue its a house makes me feel like a real person." leadership in the areas of positive behavior supports and systems change, and its work with other individuals and organizations in the disability field to ensure that funding is not placed in the hands of places that do not adhere to best practices and positive behavior supports. PAGE 20 TASHCONNECTIONS,MAY /JUNE 2001 A HOME OF MY OWN Wen the Massarelli family got a call from Frank Hodgetts at Home Partnership, Inc. asking if they were interested in testifying in Annapolis, Maryland Sharing their Story: about homeownership for people with disabili- ii ties, they immediately said "yes." In October of The Massarelli Family last year Michael Massarelli, now 35, had purchased his first home in Bel Air, Maryland Shows Legislators the and was living out the American dream of homeownership. He had lived with his family Value of Homeownership his entire life and both he and his parents, Bob and Pat, knew it was time for him to live inde- pendently. When they began thinking about BY CATRIONA JOHNSON, Michael moving out, the idea of homeownership Maryland Developmental didn't occur to them. Disabilities Council, with BOB, PAT and MIKE MASSARELLI States Pat, "Originally we started looking for an agency that ran its own facility. Gallagher 0IIIINNE Services began helping us and asked what we thought about Michael living alone. At first this arr was a bit scary to us, but after much thought we realized that it was a lot easier to live on your own than with someone you don't like." The youngest of seven children, Michael has cerebral palsy and has worked full-timeat Aberdeen Proving Ground- Edgewood Area as a Clerk Typist for the last 12 years. His parents are in their early 70s and wantedto support Michael's move to independence while they were in good health. When Gallagher Services suggested independent housing, Michael began the process of looking for an apartment he could rent. Unfortunately, he couldn't findanything in the area that met his requirements of being near his work and within his price range. That was when the idea of buyinga home came up. Gallagher Services teamed up with Home Partnership, Inc., a housing counseling organization in Harford County, Maryland to assist Michael. Michael completed a homeowner counselingcourse, and then Home Partnership worked directly with Michael to find out how much he could afford in monthly mortgagepayments. Michael was eligible for the State of Maryland's Homeownership for Individuals with Disabilities Program, which provided him witha flexible, low- interest mortgage, and Michael was able to find a house that met all of his needs. Gallagher Servicesprovides drop-in services 4 times a week to assist with activities like going to the bank, shopping, and running errands,and Harford County provides transportation to Michael to get him to and from work each day. During February and March, Michael, Bob, and Pat all testified before the House AppropriationsCommittee and the Senate Economic and Environmental Affairs Committee about what the Homeownership forIndividuals with Disabili- ties Program has done for them. Say Bob and Pat, "What it has done forus is given us peace of mind that Michael has his own home and support services. We are very thankful for Gallagher Services. They have beenwonderful and we really feel Michael's needs will be met when we are gone. As well, wecan now eat when we want to eat or not eat at all if we want to. We'have freedom that we didn't have previously and we know that this is the rightmove for Michael." For Michael the move has meant increased freedom. He says hewas lonely when he first moved away from his parent's home, but now he is beginning to see the advantages. He can socialize with people hisown age, and those who have interests similar to his own. A high priority has been his choice of with whom to live. "Since Iown my home, I can have a pet.I couldn't have done that in a group home or in a rented apartment," says Michael witha grin. Continued on page 22 PAGE 21 1 TASHCONNECTIONS,MAY/JUNE 2001 A HOME OF MY OWN Sharing their Story: The Massarelli Family Shows Legislators the Value of Homeownership Continued from page 21 House Bill 1106 (Homeownership Opportunities for Individuals with Disabilities) was introduced by Delegate Mark Shriver (D-Montgomery County), and the bill passed in the Maryland State House. It died in the Senate, but not before Secretary Skinner from the Department of Housing and Community Development agreed to continue funding. Governor Glendening has committed $2.5 million dollars for each of the next three years to continue efforts by the _Department of Housing and Community Development (DHCD) to expand homeownership opportunities to low- income Marylanders with disabilities. The Maryland Developmental Disabilities Council led a campaign by the disability community to help the Governor and DHCD understand the importance of supporting additional homeownership activities for people with disabilities. Tireless advocacy from the community and Delegate Mark Shriver was key to winning this commitment from the Governor. For more information about the Homeownership Opportunities for Individuals with Disabilities legislation in Maryland, contact Catriona Johnson, Director of Public Policy, at the Maryland DD Council, (410) 333-3688 x6 or catrionaj@md-council. org The Serena Merck Memorial Award for Innovation and Dedication in Practice 2001 Purpose of the Award The Serena Merck Memorial Award is given annuallyto an exceptional individual who has demonstrated long-term, selfless dedication and compassion in the can 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 individualscan make to children with cognitive and behavioral disabilities. The John Merck Fund has established this major, national award to honor her long-standing commitmentto this field, and to call attentiontothe invaluable role caring individuals play in it. Criteria for Selection of the Awardee Prospective awardees shouldmeet one of the following categories: (1) Provides,asan employee or volunteer, services for children who have mental retardation and significant mental health problems. (2) Demonstrates long-standingcommitment and innovative care of this population which has positively affected their quality of life and/or life opportunities. Submission Guidelines Organizational entitiesmay 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-nominationsare acceptable. Only organizations serving children with mental retardation and significant mental health problems are eligible to nominatean individual. A 500-word summary of the reason the candidate is nominated, length of service in the fidd, 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 1, 2001, 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 awards at the 18th Annual National Association for the Dually Diagnosed (NADD) Conference held Oaober 2001, in New Orleans, Louisiana. Theawardee's travel expenses to the conference will also be covered. PAGE 22 92 TASH CONNECTIONS, MAY/JUNE 2001 ENSURING UNIVERSAL VISITABILITY from participation in important social people with disabilities enter professions, Accessible activities, and from the lives of community activities, and social circles, nondisabled homeowners who may more nondisabled people become aware Homes Neap never think about the barriers which of the kinds of barriers that separate us surround them. from them. I have two other friends here Barrier-Free in Colorado who, though they them- My friend Carolyn and her husband selves do not use wheelchairs, have built Friendships Les, who live in a turn-of-the-century ramps so that they can welcome into bungalow-style home in northeast their homes people who do. Kathy, a Denver, did think about it. And they member of my writers' group, hired decided to do something about it. Les contractors to construct a ramp to the and another friend got together one front door of her west Denver home. weekend, and they designed and built aShe's invited me and Robin over for sturdy wooden ramp up to the front dinner several times. Whenever I visit, I door. No longer will five steps stand love perusing her collection of feminist between the Reeds and their friends books, and colorful craft items from who use wheelchairs. Central America. I heard from another friend just before And Laurie, a long-time friend of mine Christmas; a wheelchair user who liveswho lives in Loveland, offered her in another state, she had the opposite brother storage space in exchange for a ne cold evening in December, I experience during the holiday season. Saturday spent building a long ramp up went to my friend Carolyn's A lawyers' association held its annual to her back door. Last summer she 50th birthday party. My partner holiday reception in a private home hosted a backyard barbecue. When the Robin0 and I arrived around 9 p.m. We with a steep flight of stairs. Despite herrain started to pour, we quickly sought parked our van, went up to the door, and longstanding membership, she was refuge in her small but comfortable entered, greeting our friends with hugs. effectively barred from attending this house. If the ramp hadn't been there, We gave Carolyn her presents, and important event. The homeowner Robin and I would have had to pack up enjoyed her reactions as she opened issued an apology that was as sincere and head home, missing the rest of the them. After that, we sat around talking as it was poignant; she admitted that party. with other party guests, listening to even her own mother, who is mobility- music, drinking red wine. Around 11 impaired, couldn't visit her inaccessibleI feel extremely lucky to have friends like p.m., we reluctantly said our goodbyes, home. these, who can and do invite me into exchanged more hugs, and left. their homes. The fact that they spent The apology didn't help my friend get time and/or money making their homes So what? you might be asking. What's in the door. The same thing has accessible feels like both a tremendous the big deal? You're right; it shouldn't be happened to me: I can't count the complement and a tangible benefit to the a big deal. It was just a couple of people number of party invitations I've had tocommunity in which we live. These going to visit their good friends, sharing decline due to lack of access. And thatramps represent solid statements of in an important celebration. It was just a doesn't even include the-parties I wasn'tfriendship, and concrete commitments to party. It happens all the time, especially told about, by friends who knew I a belief in nondiscriminatory inclusive- around the holidays. wouldn't be able to come anyway. ness. This kind of exclusion really hurts. It's Bin in one sense, it was a big deal. For one thing when you can't get into a Just imagine a world in which homes people who use wheelchairs for mobility, store or a restaurant. You might have were designed to be accessible to like Robin and I do, visiting our the option of suing to demand access everyone! Not just people who use nondisabled friends is often impossible. improvements. Even if you don't, you wheelchairs, but everyone. This would Most private homes are completely can take the sour-grapes approach, not only allow for friends to visit friends. inaccessible to wheelchair users. Ameri- spurning one business in favor of It would mean that when a company or can homes are traditionally designed another, more accessible one. It's an organization holds a social function with entrances that require climbing different when you can't get into in an individual's home, people who use anywhere from two to twenty stairs. someone's home, especially when that Often that means friends, relatives, someone is a friend. Then it's personal. neighbors, and co-workers are excluded Maybe things are starting to change. As Continued on page 24 PAGE 2393 TASH CONNECTIONS, MAY /JUNE 2001 MAY/JUNE 2001 Access/He Homes Mean Barrier-Free Friendships Continued from page 23 2001 TASK Annual Conference: Full Day Institutes wheelchairs would not be excluded. It would mean that Continued from page 9 when relatives start to age, slow down, and require walkers or wheelchairs, they could still be part of their families' lives. 1-7 Positive Behavior Support: Making It Work For Direct Support Professionals & Families Facilitated by Scott Shepard There has been a tremendous need in California to simplify curriculum related to PBS for the families and direct service staff who spend the most time directly supporting children and adults with behavioral challenges. Strategies will be shared for presenting and practicing information related to PBS with families and direct service staff to promote better understanding and success. 1-8 Core Curriculum for All: Strategies for There's an international movement to try to create just Differentiated Instruction in Inclusive Classrooms such a world. Concrete Change, based in Atlanta, Facilitated by: Mary Falvey, Linda Lee, and Heidi Bjorgan Georgia, is advocating for a concept called "visitability." The morning portion of this workshop will provide infor- Specifically, Concrete Change wants all new housing mation and technical assistance in providing differentiated construction to incorporate basic access features: at least instruction for students in inclusive settings. Through one level or ramped "zero-step" entrance; and doorways differentiated instruction, ALL learners will have access to (including bathroom doors) at least 32 inches wide. the Core Curriculum. Strategies for adaptations and This grassroots group is fighting an uphill battle. The modifications will be explored to assist students' participa- homebuilding industry resists any accessibility man- tion in the core curriculum. In the afternoon, a gout of dates, arguing that such requirements will increase home peer tutors from a middle school will present their program prices. But in fact, building with basic access in mind and how they support students in inclusive settings. costs much, much less than retrofitting existing struc- tures. 1-9 (a) Strategies for Parents to Build Communication Skills to Negotiate Their Children's' Education (con- Despite the obstinacy of the construction industry, ducted in Spanish from 10 a.m. to 12:50 p.m.) (See Concrete Change can boast of several significant description below) successes. The city of Atlanta passed an ordinance in 1992 to mandate a zero-step entrance in certain private, 1-9 (b) Strategies for Parents to Build Communication single-family homes. By 1998, over 500 visitable homes Skills to Negotiate Their Children's' Education (con- had been constructed under the Atlanta ordinance. The ducted in English from 1:00 - 4:00 p.m.) city of Austin, Texas, passed a similar ordinance in 1998. Facilitated by Barbara Marbach and Ron Lopez That same year, the British Parliament enacted a law This workshop will share information and strategies for requiring basic access features in new homes constructed parents to build communication skills so they can better throughout England and Wales. negotiate for their child's special education services. Communication styles will be reviewed and scenarios from To learn more about Concrete Change, the international the IEP meeting will be role played so families can learn to effort to make all homes visitable, visit their website at become an effective collaborators with their school. http://concretechange.home.mindspring.com Laura Hershey is a disability rights leader, poet, writer and trainer. For more information on Ms. Hershey's work please visit her new web site address, http:/ /www.cripcommentary.com ) PACE 24 4 TASK CONNECTIONS,MAY/JUNE 2001 HOUSING RESOURCES A Housing Advocate'shomeownership program with 2 levels ofCenter for Universal Design rule overview material, links to HUD's Resource List final rule, and sample public housing PAGE 25 TASH CONNECTION& MAY/JUIff 2001 A NEW CHANCE FOR HOUSING FOR ALL Department of (3) evaluate the efficacy of the strategies Advancing Affordable, Housing and Urban developed during the initiative and the Development dissemination of best practices; Accessible, and Integrated (HUD), on Decem- Housing for All Americans ber 19, 2000, pub- (4) conduct research that examines the process lished a notice in the for benefits of and barriers to the implemen- BY JAY KLEIN AND BOB KAFKA Federal Register on tation and accomplishment of the objectives Access Housing of Access Housing 2000; 2000. The summary states, (5) examine whether the strategies developed during the initiative can be replicated on a "This Notice provides large-scale basis; information on Access Housing 2000, a (6) analyze Federal and State policy affecting proposed national the implementation of this initiative; and initiative that will assist persons with disabilities (7) develop a means of ensuring that the to transition from experience of the initiative receives broad nursing homes into the attention and review, e.g. creating a website." community by provid- ing improved access to The December 19, 2000 Federal Register affordable housing and Notice also states: necessary personal assistance and supportive services. HUD is 'Access Housing 2000 is a unique Wile the number of people partnering with the U.S. Department of partnership focusing on providing a national living in institutions and Health and Human Services (HHS) and the coordinated response to the Supreme Court's large facilities has decreased, Institute on Disability (IOD) at the Univer- decision in Olmstead v. L.C. (527 U.S. 581 the vast majority of individuals residing sity of New Hampshire to carry out this (1999)." Although this is only.a small part of "in the community" live in residences initiative. Using Section 8 housing vouchers their total Olmstead response, HUD and owned and controlled by someone else. in conjunction with supportive services HHS must be commended for putting firth Housing and personal assistance services available under the Medicaid program, the an initiative that recognizes the need to are dictated far more often by govern- proposed initiative presents an opportunity to provide ongoing personal assistance services ment and agency preferences than by the design and implement innovative housing (through Nursing Home Transition grants) needs and desires of people with and supportive service strategies. If successful, that are coordinated but not linked with disabilities. Current approaches do not these strategies could expand the availability assure that people with disabilities are of accessible, affordable housing in the afforded control over, or even a voice in, United States, including homeownership the most basic decisions regarding where opportunities for persons with disabilities, CHANCE (Centerfor Housing and they live, with whom they live, the and assure that such individuals receive the New Community Economics) will nature of the assistance they receive, andassistance and the ongoing supportive services work to dramatically increase how they spend their time. The develop- necessary to make a smooth and successful community capacity skills, tools and person powerto assist ment of community housing and transition to living in the community." people with disabilities to transition services for people with disabilities has from all types of Institutions and been a major national policy direction The Federal Register Notice calls for the 'other congregate living environ- for the past 20 years. Unfortunately, the Institute on Disability at the University ments into the community. administrative structures supporting of New Hampshire to create a center to: community services typically promote Facilitating broad-based systems congregate and agency-controlled "(1) Build broad-based partnerships and change at local, state, and na- approaches to housing and personal collaborations in both the public, private, and tional levels, and fostering partner- assistance services. advocacy sectors; ships between public and private agencies and foundations con- cerned with housing, community One Response: Access Housing (2) conduct outreach to create local coalitions living, and economic equity will be 2000 consisting of public, private, and advocacy a major focus of this new initiative. organizations to build ground-level support Recognizing the need for dramatic for the initiative and to assist in its implemen- changes in policy and practice, the U.S. tation; Continued on page 27 6 PAGE 26 TASHCONNECTIONAMAY/JUNE 2001 A NEW CHANCE FOR HOUSING FOR ALL Advancing Affordable, Illness: An Unidentified Population." In Hampshire (IOD) joined in partnership Accessible, and Integrated the January 2001 report, the Inspector with ADAPT to announce the creation Housing for All Americans General states that, "Twenty State of the Center for Housing and New mental health authorities (SMHAs) Continued from page 26 Community Economics (CHANCE). reported a total of 40,277 younger The IOD has a proven record of success nursing facility residents with mental with its National Home of Your Alli- illness. These 20 States report that, on ance, and ADAPT has extensive experi- average, 10 percent of a State's nursing integrated, accessible, and affordable housing ence in providing technical assistance facility population is comprised of (through the allocation of housing vouchers). regarding issues affecting people with younger individuals with a primary disabilities on a national basis. diagnosis of mental illness, and 20 that HUD informed the public in the CHANCE will implement the core percent is comprised of younger indi- August 10, 2000 Federal Register of its principles of Access Housing 2000, and viduals with a primary or secondary intention to use a portion of the remaining will embrace and promote a broader diagnosis of mental illness." unobligated Fiscal Year 2000 funds from two scope of ideals. CHANCE's purpose is Section 8 voucher programs, set aside for to offer alternatives to approaches that The Census Bureau reports that in 1990, people with disabilities, for Access Housing segregate, congregate, and control 2000. HUD did not distribute these 400 4,231 people under the age of 25 lived in people with disabilities. nursing homes. This initiative, if allowed vouchers in fiscal year 2000. Soon after the to move forward, will afford low-income August Notice was published. the IOD, Seventeen families the opportunity to use housing ADAPT, and other groups worked with Public vouchers to help establish homes for HUD, HHS, and Congress to utilize fiscal Housing their children who live in nursing year 2001 fair share vouchers instead of Authorities facilities. The housing vouchers, when using the vouchers that were set aside for (PHAs) in combined with assistance and ongoing people with disabilities. Unfortunately, these eleven states et %NI supportive services (which are part of efforts were unsuccessful. However, if will use enthusiasti- this initiative), will help these children the 400 undistributed vouchers. cally asked make a smooth and successful transition to be to living in the community. HUD will make available, through its involved in funding award process, approximately $2.5 the Access In addition, the December 19, 2000 million initially to fund 400 Section 8 Housing Federal Register Notice: vouchers targeted for use by persons with 2000 initiative. These PHAs overwhelm- disabilities and families of children with ingly stated that they wish to use the calls for creation of local coalitions disabilities who currently reside in nursing vouchers to assist people to obtain consisting of public, private, and advocacy homes:" Therefore, Access Housing 2000 integrated, affordable, and accessible organizations to build ground-level support targets people who reside in nursing homes, housing. The Access 2000 initiative is for the initiative and to assist in its implemen- who are both old and young and may have not only designed to create housing tation. This required public-private partner- physical, cognitive or psychiatric disabilities. options, but will also ensure that people ship is the initiative's centerpiece. It has the The initiative has been designed to reach all with disabilities are afforded theoppor- potential of benefiting people with disabilities categorical groups and ages of people with tunity to direct all aspects of their lives. who live in a variety of institutional settings disabilities." Access Housing 2000 will assist Public by affecting systems change at local, state, Housing Authorities and Medicaid and federal levels. 1990 US Census Bureau figures indicate agencies to develop the capacity and that 181,270 people younger than 64 collaborations necessary to assure The Notice further states that: years of age live in nursing homes. people with disabilities rent or own Braddock, Hemp, Parish, and Rizzolo housing that is coordinated with per- (2000) reported that 35,887 persons with Access Housing 2000 will increase the sonal assistance and supportive services. supply of housing for people with disabilities developmental disabilities currently People with disabilities can use the reside in nursing homes. In addition, the by providing the opportunity, over five years, vouchers to rent apartments in privately- Department of Health and Human for 2000 people with disabilities to leave owned buildings, assisted living facilities, Services' Office of the Inspector General nursing homes and rent or own their housing. or residential facilities, or to eventually attempted to identify the number of own accessible and affordable homes. People with Disabilities Will Have people between the ages of 22 and 64 Access to a New CHANCE with severe mental illness who live in nursing facilities in its report "Younger On March 18, 2001, the Institute on Nursing Facility Residents with Mental Disability at the University of New Continued on page 28 PAGE 27 9 7 TASHCONNECTION&MAY/JUNE 2001 A NEW CHANCE FOR HOUSING FOR ALL Advancing Affordable, an initiative that succeeds in bringing nursing homes, institutions and other Accessible, and Integrated about accessible, and affordable housing segregated, congregate living facilities Housing for All Americans and personal assistance for people with into the community. CHANCE will disabilities will require systems change promote innovative, field-tested, state-of- Continued from page 27 at the local, state, and federal levels and the-art strategies (based on real life the collaboration of the public and experiences) to increase the number of private sectors; and people throughout the country who CHANCE: A Broader Approach make successful transitions. the degree to which the guiding The approach of CHANCE will be principles can be replicated is enhanced based on a clearly defined set of prin- through sensitivity to state and local issues, and practical support by highly ciples promoted by the Institute on 4, Access Housing 2000 is Disabilities, ADAPT, and their collabo- competent experts (including people explained by HUD in the rators for several years. These principles with disabilities and their families). December 19, 2000 Federal pertain to both attitudes and practices .Register and by the Depart- and will guide all aspects of center The IOD and ADAPT intend to collabo- ment of Health and Human activities. These guiding principles are: rate with a broad array of "like minded" Services in a letter sent to individuals and organizations concerned State Medicaid Directors on affordable, accessible, integrated with housing, personal assistance, and January 10, 2001 titled housing must be attainable for all economic equity. CHANCE will bring "Olmstead Update No: 5.- Americans together numerous private and public Both of these documents are national financial institutions, advocacy available by clicking on while people with disabilities may organizations, federal and state agencies, Access Housing 2000 at need personal assistance services and foundations, civic and community www.affiance.unh.edu -integrated, accessible, and affordable associations, and others. These collabo- housing, it cannot be mandatory that rators will accomplish the work of If you are interested in housing assistance be linked to one's CHANCE in partnership with people signing on as a collaborator participation in or need for other types with disabilities, and families. of CHANCE, log on to of services; any resistance and barriers www.alliance.unh.edu or e- which may impede ability to access The role of collaborators will be to mail Jay Klein at individualized personal assistance and provide information and technical chance.iod@homacom or support services to live in the commu- support related to integrated, affordable, Mike Auberger at nity must be overcome; and accessible housing coordinated [email protected] with, but not linked to, personal assis- people with disabilities must be tance. This support may include working afforded the opportunity to direct all with housing agencies and lenders; aspects of their lives, including selecting creative finance and underwriting; pre- and controlling their homes and apart- and post-purchase and rental counseling;Reference: ments, services and supports, funding, home selection; and design, renovation, planning, and coordination activities; maintenance, and architectural barrier Braddock, D., Hemp, R., Para, S. and removal for housing that is rented or Rizzolo, M. (2000). State of the States owned. Other available assistance will in Developmental Disabilities 2000 include technical support with accessibil- Study Summary. Department of ity, Nursing Home Transition Grants, Disabilities and Human Development, the use of Section 8 housing vouchers University of Chicago. and other rental assistance in conjunc- tion with innovative services offered through the Medicaid program, and implementation of Olmstead-related activities. CHANCE will work to dramatically increase community capacity - skills, tools and person power - to assist people with disabilities to transition from PAGE 28 93 TASH CONNECTIONS, MAY/JUNE 2001 CENTER ON24)HUMAN POLICY Increasingly, agencies restatement, of the agency that traditionally mission and values. This offered a group home included a radical shift in model of service are the position of people with interested in converting to disabilities within the more individualized agencyfrom recipients residential supports. This of services to central article is based on inter- Agency Conversion decision makers regarding views with people associ- where they would live, ated with agencies (includ- from Group Homesto with whom they would ing administrators, people live, and who would who receive support, direct support them, as well as support staff, Board Individualized participation in organiza- members, families) that tional decision making. have converted. They Residential Support This focus on mission and include agencies that have values was sometimes converted services for less Services accompanied by an than 20 people to those organizational or strategic that have converted plan. Shifting agency services for over 200. This BY CENTER ON HUMAN POLICY values and direction was a paper highlights some of process that took time and the key issues in conver- hard work. For example, sion across these agencies. in some agencies, there These include themes was a symbolic attachment O related to: impetus for conversion, Organizational and fiscal difficul- to the facilities; one agency representa- ties. Another impetus for conversion strategies, challenges, and lessons. tive reported, "We had a big discussion was that some agencies were experienc- about what was the agencythe Inwetus for Conversion ing organizational and fiscal difficulties. building, or the service?" Those who As a result of these difficulties, they There were three central reasons for were interviewed felt it was desirable, agency change. Often, however, the made administrative and/or Board though not necessary, to have unani- changes that would address these issues impetus for change involved aspects of mous agreement among the Board and and at the same time lead the agency in all three of these areas. agency administration regarding agency the direction of conversion to individual- change, but that it was critical to havea ized support services. 0Discovering dissatisfaction with solid core of people who were commit- traditional services. Some of those ted to this, including some in leadership who were interviewed described reach- Inspiration from others. Finally, positions. ing an awareness that people in the agencies were inspired to change by group homes operated by the agency conferences or other forums where they Examination of agency coher- heard stories of other agencies around were not satisfied. Sometimes this ence with mission and values.Once the country that were using an individu- awareness came about through the agency mission and values were clari- agency's own inquiries regarding alized support approach. As one fied, a next step was examination of director explained, "We became con- people's satisfaction, and sometimes agency services for coherence with these. through external evaluation processes. vinced there was a better way for people Agency change did not just mean to live." For example, one agency representative offering individualized supports tosome reported that after conducting a con- people; it meant a commitment to a Strategies sumer satisfaction survey, "We discov- process of conversion of all agency There were many similarities across ered everybody wasn't as happy as we services. Often, this was accompanied agencies in terms of strategies that they thought they were." Dissatisfaction was by a commitment to use of self-evalua- expressed in a variety of ways, ranging used in the process of closing group tion as well as outside consultants and homes and offering individualized from general unhappiness with life ina evaluators to help plan and assess supports. group home, to incidents of behavior changes, as well. In some cases, agen- that was harmful to the person and/or cies obtained grants to help pay for others. Examination of agency mission outside consultants. and values.Often, the process of change was connected to a statement, or Continued on page 30 PAGE 29 99 TASH CONNECTION& MAY /JUNE 2001 CENTER ON HUMAN POLICY Agency Conversion from Group strengthen individual connections with Use of creative financing. Homes to Individualized family and other community members; Supporting people with severe disabili- and they have found support for the ties in individualized ways has entailed Residential Support Services agency as a whole from families and use of creative financing strategies. This Continued from page 29 other community members and commu- has included creatively combining rates nity organizations. and/or funding sources, requesting rate increases, negotiating for "bridge funding" to help with transition, and Creating individualized oppor- writing grants that support organiza- tunities for people with the most Agencies found that the service tional change and development. It has severe disabilities.In beginning to system was sometimes responsive involved working closely with and create individualized alternatives, a to the development of individual- developing positive relationships with common strategy among the agencies ized supports, but that this occurred more often on an local, regional, and state administrators was to intentionally include some people individual basis, where consum- of disability services, as well as working with the most severe disabilities among ers, providers, advocates, and in collaboration with banks, housing the first for whom changes were made. organizations, and other community Initially, they saw this as an opportunity families were bringing forward demands, rather than on a groups. One agency representative to learn for themselves what it would reflected on their work with the local take to support all people in the commu- routine, system-wide basis. As a whole, there were still many housing authority: "At first they weren't nity. systems barriers and disincentives used to dealing people, rather than agencies; they weren't used to giving Sharing success stories and to the development of individual- money to people directly, especially Once some individual- ized supports. other lessons. -people with disabilities." ized supports were in place, these examples could be used in a number of Challenges way. They could be used to give Agencies discovered numerous chal- positive energy and feedback to agency Supporting staff,Many, though lenges to conversion. Some of the key staff to continue the hard work of not all, agency staff prefer their work challenges are summarized below._ change. In addition, they could be used doing individualized supports as to educate skeptical families and other Opposed to facility-based supports, and Financial difficulties. There were two community members. It was particu- most agencies reported less staff turn- areas of issues related to finances: larly critical that some of these examples over after conversion. There were a funding for support services-and funding included those with the most severe number of steps that agencies took to for direct staff salaries. Most agency disabilities, so that everyone could see help support staff in this transition. representatives reported that funding that individualized supports could apply levels were not adequate to support to all people. One aspect of conversion involved people with severe disabilities, so they retraining staff in areas such as: what have to use creative means in order to Reaching out to families and supported living is, and how it is differ- figure this out. Also, some agencies Implementation of the community. ent from facility-based supports; person- reported that the funding structure is individualized supports was accompa- centered planning; and developing inflexible, and does not allow for nied by increased collaboration with natural supports. In some cases, changes in people's needs. Categorical families and other community members. agencies obtained grants for some of this funding can pose restrictions on agen- For families who were anxious about the staff training, and were able to involve cies. As one agency director put it, "We change, agencies spent time in meeting outside consultants. Another aspect of want to serve people, not categories." with them and shared "success stories" conversion involved efforts to give Also, funding levels are not sufficient to with them. One agency representative increased recognition and support to adequately reimburse staff; agencies try noted, "Often, parents who were against direct service staff, in order to help to do what they can to give bonuses and this change, after seeing some successes, create and sustain positive energy. This other incentives to staff, but they are changed their minds." Agencies also included, where possible, increasing staffdisturbed by this and fear burning out have reached out families and to the salaries, and/or giving bonuses. It also staff who are underpaid. community in a number of other ways: included helping staff to feel a part of a they have encouraged family members team (e.g., with families, agency admin- Transportation. Those who were (who were not already involved) and istrators, and others). And, it included interviewed reported that transportation other community members to become giving recognition to staff for successes part of support circles; they have assistedas well as support to staff for problem- people they support to develop and/or solving. Continued on page 31 PACE 30 l 0 0 TASHCONNECTIONS,MAY /JUNE 2001 CENTER ONz=40HUMAN POLICY Agency Conversion from Groupthey supported were more content. For nity Services: The advantages and Homes to Individualized instance, a director of one agency dilemmas of converting quickly from Residential Support Services observed that people seem "more group homes to supported living relaxed, more at ease, less threatened." Continued from page 30 services. Syracuse, NY: Center on Also common across agencies was the Human Policy. observation that most issues of challeng- ing behaviors diminished if not entirely Kendrick, M. (n.d.). Lessons from the is still a major factor that limits where disappeared with a conversion to replacement of a group home with other people can live, where they can work, individualized services. personalized options. Holyoke, MA: and when and with whom they can Kendrick Consulting Services. socialize. Conversion is not an endpoint. Agencies realized, during the course of Maintaining paid and unpaid support, conversion, that this would not be an as well as other community connec- endpoint in assisting people to have tions. As one agency director described, better lives, but that it would be a new "This is endless work." For agencies starting point. Agency representatives that rely on housemates, there is the agreed that while people's living situa- Preparation of this article was supported ongoing work of recruiting and support- tions are better, they are not necessarily in part by the National Resource Center ing them. There is also the ongoing work optimal. So, there will be need to keep on Supported Living and Choice, Center of developing and strengthening circles listening to and learning from the people on Human Policy, School of Education, of support and social relationships, they support. In addition, for some Syracuse University, through the U.S. particularly for those who do not have agencies, closure of group homes raised Department of Education:Office of family, but also for those whose support other glaring issues that need to be Special Education and Rehabilitative circles and friendships consist primarily addressed in people's livesfor instance, Services, National Institute on Disability of family and paid staff. In addition, the still highly segregated and facility- and Rehabilitation Research (NIDRR), within support circles, there is_some- based day services, particularly for those through Contract No. H133A990001, and in part through a subcontract with the times ongoing work involved in balanc- with severe disabilities. ing power and control issues. Research and Training Center on Systems can be responsive, but...? Community Living, University of Running a dual system. Some agencies Agencies found that the service system Minnesota, supported by the U.S. reflected that the most difficult part was was sometimes responsive to the Department of Education, Office of "running a dual system" of services part development of individualized supports, Special Education and Rehabilitative way through the conversion process. but that this occurred more often on an Services, National Institute on Disability This entailed trying to balance resources individual basis, where consumers, and Rehabilitation Research (NIDRR), and energy toward maintaining the providers, advocates, and families were through contract No. H133B980047. group homes for people who were still bringing forward demands, rather than Members of the Center are encouraged to there, and at the same time working to on a routine, system-wise basis. As a express their opinions; however, these do develop integrated community supports. whole, there were still many systems not necessarily represent the official barriers and disincentives to the develop- position of NIDRR and no endorsement Lessons ment of individualized supports. should be inferred. The Center on Human Finally, throughout the course of agency Policy subcontracts with TASH for- space conversion, there were a number of In conclusion, those who were inter- in this news magazine. lessons learned. A few of these that viewed acknowledged that "going from stood out for those who were inter- theory to practice is a huge amount of viewed are summarized here. work." During the course of this work, there was need to balance the desire to People who are supported proceed slowly and carefully with the seem to be doing better.A board urgency to assist people in having better member described that, before their lives. Finally, two of the critical keys to conversion, "people were in captivity." successful conversion are "persistence Across agencies, people with disabilities and collaboration." and family members who were inter- viewed indicated much greater satisfac- Additional Resources tion with individualized services. Administrators also felt that people who Hulgin, K. (1996). Jay Nolan Commu- PAGE 31 i01 TASK CONNECTIONS, MAY/JUNE 2001 Policy Statement Priscilla Newton, Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Chair, Executive CommitteeBob Kafka torial judgement in selection of materials. All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary Ming-Gon John Lian, Ex-Officio use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Tia Nelis abilities. Terms such as "the mentally retarded," "autistic children," and 'disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Marcie Roth Terms such as "people with mental retardation," "children with autism,' and "in- Linda Bambara, Ex-Officio Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Wanda Blanchett Richard Sobsey ment for a product or service does not imply TASH endorsement. For a copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio Jacqueline Thousand 8274, ext. 102. June Downing Lucille Zeph MEMBERSHIP INFORMATION Name: Address: City/State/Zip: Telephone: ( Fax: ( ) E-mail: Is the above your work address homeaddress other Please Check Appropriate Categories () Educator/Teacher (K-12) () Related Services Provider (not more than three): () Government Personnel () Self-Advocate/Person w/ Disability () Administrator/Adult Services () Legal Services Provider () Social Worker () Administrator/Education_ () Occupational/Physical Therapist () Speech/Language Pathologist _( ) Administrator/Other () Parent/Family Member () Special Education Teacher ( ) Adult Service Provider/Staff () Personal Assistant () Special Education/Support Specialist ( ) Advocate/Friend () Professional/Public Policy Advocate () Staff Development/Trainer _( ) Behavioral Specialist () Professor /Instructor - College/University () Student ( ) Case-Manager () Psychologist () Suppoited Employment ( ) Early Childhood Services () Regular Education Teacher/Administrator (-) Other Moving? 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Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 'processing fee if check is not drawn on a U.S. bank. *These prices are for both International and Chapter memberships. For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column. For a list of membership benefits, please 8274. call 410-828-8274, ext. 107. aiTASH NON-PROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE _ Suite210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274, PERMIT NO. 187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: www.tash.org Address Service Requested 102 MAY/JUNE 2001 PRINTED IN THE U.S.A. VOLUME 27 ISSUE NUMBER 7/8 JULY/AUGUST 2001 Equity, Quality and Social Justice for People with Disabilities 2001 TASH Conference Co-Sponsored by LicrASH IMagin the Future mo. NMI This is the tentative conference agenda as of 1"34. August 10, 2001 and is subject to change.The official conference program is distributed on-site. 1 .0 3 111 BEST COPY AVAILABLE JULY/AUGUST 2001 TABLE OF CONTENTS From the Executive Director Page 3 2001 TASH Keynote Speakers Page 4 Tentative Conference Agenda Page 6 learning materials 2001 TASH Techs Page 8 2001 Saturday Institutes Page 9 The Professionals' Choice Conference Registration Form Page 11 In-Focus Areas Page 12 Thursday Sessions Page 15 2001 Conference Exhibits Page 20 Call for Conference Volunteers Page 23 Friday Sessions Page 24 Child Care Registration Form Page 26 Rally for Community Inclusion Page 32 2001 Positive Images Awards Page 33 Poster Sessions Page 35 Saturday Sessions Page 36 Governmental Affairs Page 38 Available Card Sets: Language Butider Naar, Noun Cants TASH (formerly The Association for 350 cards from 9 different categories. including animals. vehicles. foods. clothing. furniture. Met, everyday objects, shapes and colors. Features cards to teach Persons with Severe Handicaps) is an Identical and similar matching, as well as receptive and esmnessive labeling. international advocacy association of Language Budder Or:ovarian Cards 116 cards featunng male and female depictions of common occupations. people with disabilities, their family Ideal for labeling, as well as descripthe and imaginative exercises. members, other advocates and people The most rumen and realark cards on the market who work in the disability field. Visit our ...bikewww.stagesleaming.com TASH actively promotes the full in- weal 888-501-8880 bogus as anise or receiveIran cake brochure. clusion and participation of persons with disabilities in all aspects of life. To receive an information packet, contact: TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204 or phone (410) 828-8274, ext. 8 or e-mail: [email protected]. WHOM DO I CONTACT?? 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 2001 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, [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: Jamie Ruppmann, Director of Advocating for opportunities and rights; Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: [email protected] Eradicating injustices and inequities; For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supporting research and disseminating Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] knowledge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting inclusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and TASH Connections is available on audiocassette, in large print, and in Braille for people whose disabilities make these alternative litigation; and, formats p4,able. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material appearing in TASH Connections should be sent to: TASH Connections, 29 W Susquehanna Avenue, Suite 210, Baltimore, Promoting excellence in services. MD 21204, Attn: Connections EditorPermission requests can also be faxed to (410) 828-6706 or sent via e-mail to: pnewton@tas h. org. BEST COPY AVAILABLE PAGE 2 10 4 TASH CONNECTIONS, JULY/AUGUST 2001 FROM THE EXECUTIVE DIRECTOR are of the greatest interest to people withwho cannnot attend the full conference disabilities and their advocates: will have the opportunity to attend the Saturday Institutes for a nominal fee. making inclusion work 4community living Exclusive to this year's conference is the self-advocacy Image Awards Forum and Reception. +family issues The theme for this year's conference is early childhood "Imaging the Future." How do the communication images of people with disabilities employment portrayed in advertising, movies, on TV, +criminal justice and through other forms of media affect governmental affairs the way society views people with From the Executive Director sexuality disabilities? What can be done to assure BY NANCY WEISS alternatives to guardianship that positive images are promoted? The +transition conference will include speakers, a panel seeking to understand autism discussion, and a reception/showcase What do you think of when +personnel preparation highlighting the most important suc- you think of a TASH critical ethical issues cesses in positive media imagery of conference? For those of +positive behavioral supports people with disabilities. you who have attended one (or many!) multicultural issues you know that TASH conferences have +recreation and leisure Also featured at this year's event will be little in common with conferences voices of friendship opportunities for people looking to characterized by a litany of dry, take-a- +research "hook up" with new people at the look-at-the-findings-of-this-obscure- related services conference. Each evening we will research kind of presentations. +higher education organize a meeting place for folks spirituality interested in connecting with others for Recent conference goers have described +school reform dinner. Even if you are attending the the TASH conference as "embracing," alternate assessments, and more conference alone, you will have a way to "rejuvenating," "action-oriented," "fun," meet others from across the country and and "vibrant." One advocate said, "Of This year we are continuing last year's around the world for enjoyable dining course, the TASH Conference isn't so highly successful Roundtable Lunch and great conversation. Everybody is much a conference as it is a happening!" opportunity. Sign up in advance for a welcome! TASH isn't a professional association; it box lunch, then choose a table marked isn't a parent organization, nor is it a with a discussion topic of your choice. Friday afternoon's rally in support of self-advocacy group. Rather TASH is a Meet with national experts, researchers, community living and equitable wages true blending of all three of these - an direct support professionals, educators, and benefits for those who provide association of people from all walks of parents, self-advocates and others, assistance, support and services to life who are concerned with the most around the topics that are of most people with disabilities is sure to provide important issues facing people with interest to progressive disability activists a sense of solidarity for the cause of disabilities and their families. Only today. Have a discussion topic you'd like community. within TASH do parents, self-advocates, to see discussed? There's still time to researchers, students, and professionals make a recommendation (e-mail Kelly Finally, for the first time in many years, come together to create an unstoppable Nelson at [email protected]). the conference in Anaheim will end on movement for social change. The Saturday afternoon with a moving conference is the embodiment of Also back by popular demand this year closing gathering that will give us the TASH's spirit, a place where you will is the exclusive exhibit and poster energizing spirit that each of us needs to feel welcomed, included, challenged and session time on Saturday morning with move forward the ideas we will take with energized by the incredible variety of a complimentary continental breakfast US. new ideas you'll encounter and new provided. people you'll meet. We welcome you to take a look at the Saturday Institutes are a new addition descriptions of the plenary sessions, This year's conference includes some to this year's meeting, and we hope all hundreds of exciting concurrent sessions tried-and-true events as well as some conference attendees will take advantage and the incredible speakers that this things that are new this year. You will of the opportunity to attend a full-day year's conference has to offer. We look still find the country's best array of session at no additional cost (see page 9 forward to seeing you in Anaheim! conference sessions on the topics that for details). Local attendees and others q. PAGE 3 1 0 5 TASH CONNECTIONS, JULY/AUGUST 2001 GENERAL SESSIONS specializing in disability, diversity, disability issues from a "salad bowl" and social issues. Some of EIN approach instead. 2001 SOF's clients include Microsoft's Accessible Technology Group, TASH Cingular Wireless, Nickelodeon's Caroline "Ann" Thomas launch of their John Callahan animated series, Pelswick; and the KEYNOTE full spectrum of national disability Caroline organizations. Tari has been actively "Ann" SPEAKERS consulting with and creating synergy Thomas is with the disability community, an interna- media, corporate America, govern- tionally Daniel Keplinger ment, and the public for many years. accom- plished self- advocate Daniel John T Sanford, Esq. who travels Keplinger, throughout about whom John the US and the Acad- Thomas abroad consulting and speaking emy Award Sanford, about issues relating to self-determi- winning III, is a nation, self-advocacy, and systems film, King practicing change. Ann is the incoming Presi- Gimp, and attorney dent for People First in Ohio and is the stunning in the a member of many statewide and and power- State of national committees. Ann is very ful Cingular Michigan proud to be on the Robert Wood advertise- and Johnson's Self-Determination Grant ment released during the Super Bowlcurrently serves as the Co-founder Steering Committee for the State of were made. Throughout his life, in and Chairman of The National Ohio. words and actions, Dan has embod- Family for the Advancement of ied the values of TASH. We are Minorities with Disabilities. For pleased that he will be joining us in more than twenty years, John has Anaheim, helping to shape an used his legal expertise and personal Other invited General Session speakers incredibly powerful dialogue about commitment to actively battle for thenot yet confirmed as this issue went to the role of media and advertising in civil rights of persons with disabili- press include: changing the images of people with ties. John will address what he disabilities. Robert Pasternack, Assistant believes is the fallacy that the disabil-Secretary of Education, OSERS ity rights movement has been operat- Julie Clark, U.S. Department of Tari Susan_ Hartman ing under, which is that it is a Labor, Presidential Task Force on "melting pot" when it comes to Employment Tari Susan addressing disability issues. He Hartman's believes this fallacy has falsely led EIN SOF the movement to be under the iLook for information about Communica- impression that is has addressed the these and other invited tions is the issues of all people with disabilities, speakers on TASH's website Joint Strategic Platoons Session Pianneb for Anaheim!! welcomes A strategic planning session will be held in conjunction with the confer- ence on Saturday, November 17th from 1:00 - 4:00 pm. The purposes of this session will be to: To Southern California Identify what the TASH committees, chapters, members, staff and Board have accomplished toward Please join us for meeting the goals of the current Music, Appetizers, strategic plan. and a No Host Bar Review and discuss the proposed Wednesday, November 14th mission statement and new names for TASH. A final recommendation on a 6:00 - 8:00 p.m. new name will be made by the people attending the strategic planning Guest Speaker: session in Anaheim. It is planned that a decision on a new name will be Laura San Giacomo finalized by the Board at their meeting Star of the hit NBC show, following the strategic planning session. "Just Shoot Me" "How Inclusion Has Touched My Family" All chapter officers, committee chairs, Board members and staff are invited Networking! to participate! All chapters and committees are encouraged to have at CAL TASH Award Presentations Ceremony least one representative attend this Robert Gaylord Ross Award for Scholarship important meeting. If you would like Rosenberg Service Award to attend (but are not a committee or Mary Falvey Young Person Award chapter representative), please contact Nancy Weiss at Want to have your voice heard on the new name proposals? At the confer- ence, all members will be given an opportunity to participate in a poll to indicate your choice for a new name from the options proposed by the New Name Committee. PAGE 5.10 TASH CONNECTION, JULY/AUGUST 2001 2001 TASH ANNUAL CONFERENCE With its shared focus, TASH 2001 TASH Conference Hotel incorporates everyone Information who has an interest in the °IMAGING THE FUTURE" full inclusion of people labeled with 2001 TASH Conference The conference hotel is the Anaheim the most significant disabilities. Marriott, located at 700 West Conven- People who, traditionally, have been Anaheim, California tion Way, Anaheim, CA 92802. denied access to quality education, Phone: 1-714-750-8000, Fax: 1- 714 -750- valued employment, and the right to November 14-17, 2001 9100, or Marriott Worldwide Reserva- inclusive community living. tions 1-800-228-9290. With its focus on best practice, TASH This year for the first time you can make provides a forum for individuals with hotel reservations for the TASH confer- disabilities, families, researchers, ence directly on the web using the educators, scholars, and others to following Group Codes: create dialogue around innovative supports. With its focus on creating Continued on page 7 change, TASH provides a forum for social and systems reform. And for many, TASH provides a mechanism for renewing the spirit, lifting the heart, and challenging the mind. Tentative Conference Agenda Wednesday, November 14th This unique gathering has a synergy 10:00 am - 2:00 pm Registration Open and motivation surpassed by none. 1:00 pm - 6:00 pm TASH Tech Pre-Conference Workshop The theme of the 2001 TASH 2:00 pm 8:00 pm Registration Open Conference "Imaging the Future" is 6:00 pm - 8:00 pm Opening Reception (sponsored by Cal-TASH) about recognizing the power of tangible or visible representations Thursday, November 15th projected through the mass media. 7:00 am 10:00 am Exhibitor Set-Up The images projected by film, art, 7:00 am - 2:00 pm Registration Open music, news, movies and other 8:30 am - 10:00 am Opening General Session mediums create perceptions and 10:00 am 1:00 pm Exhibits Open popular societal attitudes about 10:30 am 5:45 pm Conference Breakout Sessions People with disabilities. 1:00 pm - 2:15 pm Roundtable Luncheon or lunch on your own 2:30 pm - 6:00 pm Exhibits Open Beliefs or perceptions can become so 5:45 pm - 7:30 pm Reception honoring award winners powerful that they obscure reality, and as we know, create barriers to acceptance and belonging. This Friday, November 16th conference celebrates images and 7:00 am - 12:00 pm Registration Open innovations that have contributed to 8:00 am - 5:00 pm Conference Breakout Sessions positive and empowering perceptions 8:00 am - 10:30 am Exhibits Open and beliefs about the inherent value 10:30 am - 12:00 pm General Session and contribution citizens with 12:00 pm 12:45 pm Break disabilities bring to and deserve from 1:30 pm - 7:30 pm Exhibits Open society. Join us as we seek to bring 5:00 pm Rally and Press Conference solidarity around this issue to ensure 5:45 pm - 7:30 pm Reception in Exhibit Hall media images is value, acknowledge, and welcome civic participation of Saturday, November 17th individuals with disabilities. 7:00 am - 10:00 am Registration Open 7:30 am - 10:00 am Poster Presentations 8:00 am - 12:00 pm Exhibits Open 10:00 am - 2:15 pm Conference Breakout Sessions 10:00 am - 4:00 pm Full Day Institutes 12:30 pm - 1:30 pm Closing Gathering PAGES 105 TASH CONNECTIONS, JULY/AUGUST 2001 2001 TASH ANNUAL CONFERENCE 41MAG I NG THE FUTURES future TASH Conferences, as we earn one round-trip ticket for every 40 attendees 2001 TASK Conferencethat fly on the official conference airlines. University of Toledo Continued from page 6 Southwest Airlines is offering a 10% COLLEGE OF EDUCATION discount on most of its already low fares for air travel to and from the TASH Group Codes for the Web Convention. You or your travel agent Tenure Track Faculty Position in Single room code - CITCITA can call Southwest Airlines Group and Area of.Special Education - Severe Double room code CITCITAB Meetings Reservations at 1- 800 -433- Disabilities Triple room code CITCITAC 5368 and reference TASH ID Code: Quadruple room code - CITCITAD R7304. Reservation sales agents are available from 8:00 a.m. - 5:00 p.m. Advanced Assistant or Associate Be sure to mention that you are making Monday -Friday or 9:30 a.m.- 3:30 p.m. Level Professor (Severe Disabili- reservations for the TASH Conference toSaturday and Sunday in all time zones. ties). Faculty member will coordi- take advantage of these reduced rates. You must make reservations five or more nate undergraduate and graduate days prior to travel to take advantage of degree programs in area of severe Single Room - $140.00 plus tax this offer. disability, with emphasis on persons Double Room - $160.00 plus tax with developmental or behavioral Additional Person $20.00 United Airlines is offering a 5-15% disabilities. discount on air travel to the TASH Please be advised that the above rates do Convention. You or your travel agent Candidates should have established not include current room tax, which is can call United at 1-800-521-4041 to an emerging record of higher 15%. The block of rooms held for the book a flight. You will receive a 5% education teaching, publication, TASH Conference is being held until discount off the lowest applicable conference presentations, grant October 14, 2001. When the block is discount fare, including First Class.or a support, and_ professional service full, or after October 14th, rooms will be 10% discount off of full fare unrestricted focused on persons with severe available if space permits, however, they coach fares purchased 7 days in advance disabilities. Earned doctorate in may be at a higher rate. of travel. An additional 5% discount will special education. Previous profes- apply for tickets purchased at least 60 sional or classroom teaching For accessibility, roommate referral, days in advance of the travel date. experience is desirable. Salary and personal assistants or other accommoda- Discounts also-apply to Shuttle by benefits are competitive and include tion-related questions, please call 1 -800- United and United Express. Please be summer session option. 482 -8274 or send an e-mail to sure to reference TASH Meeting ID PAGE 7 1 nq TASHCONNECTIONS,JULY/AUGUST 2001 2001 TAN TECHS TASH TECH Pre-Conference, Futt-Day Workshops Wednesday, November 14, 2001 1:00 6:00 p.m. TASH TECHs are 5-hour, pre-conference the beliefs and skills necessary for supportingchildren of all abilities in community workshops. There is an additional fee for school communities to embrace inclusion. settings. A variety of strategies offered by attendance to these workshops, and pre- certified Project ACT teachers designed to registration is required to guarantee seating. T-4 Designing and Implementing educate child care providers, Head Start Inclusive Curriculum: Teaching, teachers, and public school teachers, as well T-1 If Everyone Agrees This IS SO Community and Standards as parents, the community, and other Important, Why DO SO Few Kids Facilitated by Mara Sapon-Shevin, Mary professionals will be presented. Have Friends? Fisher, and Paula Kluth Facilitated by Carol Tashie and Zach This interactive workshop will address T- 8 Creating Successful Experience Rossetti strategies for designing and implementing for All Students Through Positive Most people agree - friendship and relation- inclusive curriculum for heterogeneous Behavioral Supports ships truly do make the world go 'round! learners. Ways of incorporating state Facilitated by Deborah Heeden, Barb Ayres. However, many parents of children with standard and IEP objectives within rich, and Susan DeLuke disabilities report that their sons and cooperative, multi-level curriculum will be This interactive workshop will provide daughters are lonely and lack meaningful explored and experienced by workshop participants with information on positive relationships with classmates and friends. participants. behavioral supports. Key components that This workshop is designed to identify some will be explored include: understanding your of the real barriers to friendship and spark T-5 Literature-Based Language own attitude or posture; acknowledging the discussion on the strategies to support Intervention for Students Who Use function of behaviors; gathering information meaningful relationships for all children and AAC about the student; and determining how youth. Through the use of the video Facilitated by Amy Staples and Beth Foley difficult behaviors can be prevented. "Voices of Friendship" the participants will This session will provide participants with Participants will create social stories, visual learn about the relationship of five teenage current research findings regarding language schedules, and visual timekeepers that can be girls and the lessons they have taught us on and literacy development for AAC users, a sued with the in individuals they support. how to facilitate real friendships. framework for implementing literacy instruction, and an array of strategies for T-9 Exploring the Role of Spirituality T-2 Using Internet Tools to Enhance promoting interaction during literacy-based and Disability Collaboration and Provide Training activities for elementary through high school Facilitated by Kathy O'Connell, Bonnie and Technical Assistance to Service students. Shoultz, Maureen Keyes, and Ron Taylor Providers and Families: A Hands-on This interactive workshop will explore Demonstration T-6 Partners in Justice various components of how spirituality can Facilitated by Richard Kiefer - O'Donnell and Facilitated by Debbie Gilmer, Diane Nelson- be an influential part of life for people living Fred Spooner Bryen, Helen Bailey, Alan Hammond, Alan with disabilities. Specifically, this session This workshop will demonstrate and train Kurtz, and Kathy Son will explore disability as a spiritual process. participants in how to use video Every day people with mental retardation the power of meditation, imaging the future conferencing, threaded discussions, chats, come face to face with the criminal justice and spiritually centered leadership. application and file sharing, whiteboards, system - as victims of crime, witnesses to and online broadcasts (webcasts) for team crimes and as people accused of crimes. In T-10 Civics 101...CANCELLED collaboration and provision of technical this interactive workshop for criminal justice assistance at a distance. personnel, attorneys, advocates and others, T-11 Supported Living: It's Not a the Maine Partners in Justice team will share Program...It's Your Life! strategies for getting relevant training to the T-3 Changes in Latitude, Change in Facilitated by Scott Shepard, Cheryl front lines. Participants will receive a CD Attitude: The Essential Role of Mayfield, Keenan Inouye, Jose Perez, Pam with the Maine version of the curricula. Inclusion Facilitator in Promoting Aiona, Carlos Cueva, Jill Martin, Igor Full Inclusion Veremeykin, Ronda Michaelson, and Andre Facilitated by Cheryl Jorgensen, Zachary T-7 Creating Inclusive Childcare Settings Vargas Rossetti and Sharon McGovern A panel of people who receive services and For schools to become inclusive, the role Facilitated by Pam Miller and Peggy Florio support staff will share their stories about and title of special education teacher must This workshop will provide information on what supports they need and how those change to that of Inclusion Facilitator. This facilitating the collaboration of families, supports need to be provided to keep people full day workshop will present examples of childcare professionals and other education and service agencies to successfully include 110 Continued on page 9 PAGE 8 TASHCONNECTIONS,JULY/AUGUST 2001 2001 TASH TECHS TASH TECH Pre-Conference, Full - services. This session will encourage participants to challenge traditional ways of Day Workshops T-15 Civil Rights, Self-Determination thinking about their roles as people with Continued from page 8 and Decision Making vs. Guardianship Facilitated by Dohn Hoyle, Sally Burton- disabilities, staff members, parents, teachers, behavioral specialists, or other professionals Hoyle. Kathleen Harris, Tom Nearney, and and will encourage participants to rethink safe and active in their communities. A Mayer Shevin some of the most basic assumptions that brief overview of what Supported Living Stripping people of their rights by establish- have guided the field. Critical pedagogy Services can and should provide will be ing guardianship is altogether too common. suggest new ways of thinking and acting that discussed. This workshop will focus on alternatives and will result in greater opportunities for best practices for supporting people at risk, mutually respectful relationships and social T-12 Creating and Sustaining Positive including individuals with the most signifi- justice. Through dialogue we will address Partnerships with Paraeducators cant decision-making support needs. two questions. (1) How does understanding Facilitated by Deborah Tweit-Hull, Ann Discussion will include how guardianship our world create the possibility of changing increases the risk for persons who are the Halvorsen, Pamela Villalobos, and Dona our experiences of the world we live in? most vulnerable, supporting choice and self- (2) What do we need to understand about Meinders determination rather than substitute or Paraeducators play a pivotal role in many our world in order to change it? Join us for "second party" best interest decision- this exciting, interactive day. inclusive classrooms, yet there are few making. as well as best practice in keeping opportunities for professional development with TASH values. This session is designed or training. This interactive workshop will for family members, attorneys, care manage- 1-2 Families Planning Together present strategies and share materials ment. agency staff, and long-term advocates Facilitated by Shelley Dumas, Mary Lou developed to train, mentor, and evaluate who believe in the principles of freedom and Bourne, Amanda George, Sherrie Anderson paraeducators to provide effective supports self-determination. and Bonnie Miller in inclusive classrooms. In this full day institute, families will learn a step by step process for beginning develop- T-13 Perceptions of Spanish Speaking ment of an "essential lifestyle plan" with Families Regarding Inclusive Educa- their family members as well as to identify tion in Southern California At the request of our members, TASH is trying methods of obtaining on-going planning Facilitated by Mary Falvey and Ben Adams something new this year. Institutes arr assistance. The plans created during this full This workshop - to be presented in Spanish interactive workshops that are available to day workshop will be used to help ensure the with interpreters - will present the views and conference attendees who register for the full presence in life of what's important to and perceptions of Spanish speaking families as three-day conference at no additional charge. for family members. they share their experiences with inclusive Others are welcome to register and attend a full- education in South-Central Los Angeles. day Institute as an "Institute Only" registration 1-3 Implementing Social Coaching Participants will look at the meanings and at the rate listed on the registration form on Facilitated by Paul Selby beliefs that led them to make the decision to Page 11. Across the country, many individuals with educate their children, who have severe significant support needs are now living and disabilities, in the general education class- working in the "community". Yet, too often, room. Strategies in collaboration and their supports are provided following the old _ problem solving will be shared. segregation policies and procedures. This Full Pay Institutes full day institute will present strategies for T-14Transition as it Relates to the social coaching in the cominunity. Young Person with a Disability Saturday, November 17, 2001 Facilitated by Marilyn Barraza and Susann 10:00 a.m.4:00 p.m. 1-4 Cultural Brokering: Application of Terry Gage a Model to Provide Supports to This workshop is designed to provide you I-1 Critical Pedagogy and Inclusion: Individuals and Families from Diverse with an awareness of transition as it. relates Understanding Our World in Order to Communities to the young person with a disability and the Change It opportunities that these life changes can Facilitatd by Paula Sotnik provide. Participants will engage in develop- Facilitated by Jacqueline Thousand and Don For a recent immigrant with disabilities, the ing meaningful transition plans for middle Cardinal, Suzanne Sooltoo, Ann Nevin, challenge of obtaining supports is often and high school students that will promote Rosario Diaz-Greenburg arduous. The Cultural Brokering Model success in the post secondary setting. Each Critical pedagogy explores the ways in whichprovides service providers with a replicable participant will draft a transition plan after change is made in people's lives (all of our framework to develop effective support defining what a quality life might look like lives!). These ways don't necessarily fit with strategies by examining all factors in a for a young person with a disability. traditional parent/child, caregiver/service sequential and participatory manner. Multiple models of transition programs will recipient, or teacher/student models of be discussed. lit Continued on page 10 PAGE 9 TASHCONNECTIONS,JULY/AUGUST 2001 2001 SATURDAY INSTITUTES Saturday Institutes, Full-Day 1-8 Core Curriculum for All: Strategies Transition Training" designed to empower families to advocate and enable their Workshops for Differentiated Instruction in Inclusive Classrooms children to transition to a full and inte- Continued from page 9 Facilitated by: Mary Falvey, Linda Lee, and grated community life.Modules include: laws and regulations; person-centered Cindy Sawchuck planning; benefits; social and psychological The morning portion of this workshop will dynamics within the family; model living provide information and technical assistance Participants will apply the Cultural and employment programs; health care in providing differentiated instruction for Brokering Model to analyze and better serve issues; socialization; and IEPs. individuals with disabilities and families students in inclusive settings. Through from diverse ethnic, linguistic and cultural differentiated instruction, ALL learners will have access to the Core Curriculum. I-11 Inclusive Secondary Schools -- backgrounds using presentation. small group Lessons Learned in Supporting and case study analysis application. Strategies for adaptations and modifications will be explored to assist students' participa- Diverse Students 1-5 Supporting Students with Autism tion in the core curriculum. In the after- Facilitated by Doug Fisher This session focuses on creating inclusive in General Education Classrooms: noon, a group of peer tutors from a middle school will present their program and discussschools for students at the middle and high Lessons Learned how they support students in inclusive school level. Discussion of topics such as Facilitated by Rae Sonnenmeier and Michael settings. differentiating instruction for all students, McSheehan curriculum modifications and accommoda- Learn about New Hampshire's statewide 1-9 (a) Going to School: Strategies for tions, and individualized supports. system change efforts to support students Parents to Build Communication with autism in general education classrooms. Examine the content covered in the varied Skills to Negotiate Their Childrens' training activities and the process for Education (conducted in Spanish from facilitating and sustaining change. Partici- 10 a.m. to 12:50 p.m.) (See description pate in skill building activities for profes- below) DIRECTOR OF sional and leadership development. 1-9 (b) Going to School: Strategies for CONNECTIONS 1-6 Stepping Out: A Game of Life that Parents to Build Communication Goes to the Heart of What it Means toSkills to Negotiate Their Childrens' be Human Education (conducted in English from An innovative program of Onondaga Community Living Facilitated by Sally Sehmsdorf, Chris Bily, 1:00 - 4:00 p.m.) Errin Bily and Sherry Lookabill Facilitated by Barbara Marbach, Ron Lopez providing personalized supports for Stepping Out explores the Art of Dialogue, and Dale Mentik adults with MR/DD through HCBS Person Centered Planning, and Diversity. Representatives of the Class Member Review Waiver. Participants with and without disabilities Committee and their counsel, Protection & collaborate to construct a game and play it. Advocacy, present a report on the status of Develop, supervise and manage Imagine a giant board game with a path that the Chanda Smith Consent Decree, now in program and work with advisory begins with dreaming, moves through its fifth and most crucial year to date. The board towards incorporation. confusion to reflection, creates a space for Committee's new documentary "Going to Ensure supports are developed and calling a circle of friends, and finally reaches School" by Richard Cohen Fils.com will be delivered in compliance with its goal of contribution to the community screened with English/Spanish subtitles.It Federal and State laws and policies. and full inclusion. Participants are encour- provides a first-hand look at inclusion and $250k budget. aged to communicate their ideas using a special education services by focusing on a variety of means. Los Angeles middle school. Using this film Tremendous growth potential! as a tool, this session will explore strategies 1-7 Positive Behavior Support: Making for building essential collaboration skills so Experience with MR/DD, It Work For Direct Support Profes- parents can better negotiate for their child's BS/BA in Human Services with sionals & Families special education services and become strong philosophy, supervisory, Facilitated by Scott Shepard effective collaborators with their school management and organizational There has been a tremendous need in team. skills. California to simplify curriculum related to PBS for the families and direct service staff I-10 An Introduction to "Real Fu- Please forward resumes to: who spend the most time directly supporting tures: A Transition Training for children and adults with behavioral chal- Parents of Children with Disabilities" Patricia Fratangelo lenges. Strategies will be shared for present- Facilitated by Mary Cazden and Wendy Onondaga Community Living 518 ing and practicing information related to Byrnes James Street, Suite 110 PBS with families and direct service staff to Parents, educators, and agency staff will be promote better understanding and success. Syracuse, NY 13203 introduced to "Real Futures: A Parent EOE 1 1 2 PAGE 10 TASH CONNECTIONS, JULY/AUGUST 2001 INTERNET ConferenceTASHOffice Use Only /Is ASI Registration°rg Cust Reg Init (Esto forma es disponible en espafiol) Instructions for filling out this form: Mail: TASH. 29 W. SusquehannaAvenue, 4. Suite 210, Baltimore MD21204 1. Pleases print and fax or send this form. N. , >Fax: (410) 828-6706 2.Fill out one form for each person attending 0Questions? 1-800-482-TASH (8274)or 410-828-8274; 3.A form of payment must accompany your registration TDD: (410) 828-1306 . Please make checks payable to TASH. Email: [email protected] Website: www.tash.org TASH Federal Id # 51-0160220 ConferenceParticipant: First Name: LastName : Badge Name: Organization: Address: City / State: Postal Code: Country Thisaddress is [ '] home [ ] work [ ] school [ ]other Work Phone: Home Phone: Fax: - E mail: (l.r.A Accommodationsneeded: RegistrationCategoryCurrent TASH International Members [ ] Individual Registrant $239 Current TASHMember # l 1 Family Member / Or Person with a Disability $ 79 (*Personal assistantsmust register at the same time as [] Personal Assistant * $ 50 individual forwhom they are providing support to attend [] Student $ 159 conference activities) [ ] One da only OThurs Fri $149 RegistrationCategory TASH Chapter Only or Non-Members Register andJOIN International TASH NOW!! H Individual Registrant $369 $327 [ ] Family Member/ Or Person with a Disability $155 $124 [ ] Personal Assistant (*see note above) $50 $95 [ ] Student $259 $204 [ ] One day only OThurs Fri $199 $237 1. Enter Registration Cost To join your chapter also $ I lease add $15.00 AdditionalRegistration Discounts A. Team Discounts - Groups of 5 or more registering Subtract Discount Here 4 together (must be in the same envelope) $20.00 per person, per discount $ B. Early Bird - registrations received before Sept. 17, 2001 Round Table Networking LuncheonThursday, $20.00 per person 1:00-2:15 PM (you must purchase a ticket in advance, and please be sure to note any special diet requests) Add Luncheon Fee Here - $ Pre-ConferenceWorkshops 1:00 - 6:00 PM,Wednesday, November141h( Registrat'onis in addition tothe conference fees) SaturdayInstitutes, 10:00 AM - 4:00 PM November1711' (If youregisteredfor the Fullconference youcan attend one of the SaturdayInstitutes at no charge. If youwould like to signup to attendan InstituteONLY - the ratesbelow apply. Please reviewthe TASH TECH Workshopsand Institute descriptionson Rates for TECHSand Institutes: pages 8-9.Be sure to mark the number of yourfirst and secondchoices. TASH Member S55.00 0 I plan toattend the Saturday Joint Strategic PlanningSession (no charge) Non-Member $85.00 0 I plan toattend a TASH TECH1st Choice 2"d Choice Individual w/a disabilityor S40.00 0 I plan toattend a Saturday Institute1st Choice 2"d Choice Family Member Enter Total AdditionalFee Here - $ I would like to make a donation to support a self-advocate/parent$5 $10 $15 $ Payment Terms: 0 Check 0 Purchase Order TOTAL AMOUNT ENCLOSED S 0 Visa 0 MasterCard 0 Discover Registration will not be accepted without payment by check, purchase order, or Name: credit card authorization. Payment must be in U.S. Funds only. A $25.00 fee will Card # Exp. be deducted from all requests for refunds received before October 15, 2001. No Signature: refunds after that date. $25.00 fee for returned checks or unauthorized charges. IN-FOCUS AREAS become more confident and effective N advocates for ourselves and others. locus Areas Participants will find that these sessions are welcoming to everyone and acces- traditional parent/child, caregiver/ sible to everyone. If you are new to service recipient, or teacher/student advocacy, shy about speaking up or Advocacy models of services. This focus area will writing letters and sometimes confused Thursday and Friday feature sessions that encourage partici- about who to talk to and about what, Coordinator: Dan Dotson pants to challenge traditional ways of these activities are for you! Experienced Join this lively focus area for a series of thinking about their roles and encour- advocates will learn new strategies and presentations on advocacy and self- age them to rethink some of the most share ideas with a diverse group of advocacy. Sessions will be facilitated by basic assumptions that have guided the national leaders. advocates and self-advocates and will field. focus on the skills needed to effect Forging New Alliances in School change at both the personal and policy R alarm: R ales of R elated Services levels. All sessions within this focus areaEarly Childhood for Successful, Inclusive Communi- will provide opportunities for discussing Thursday and Friday ideas and for sharing strategies for Coordinator: Elizabeth Erwin cation and Literacy Support success. This focus area includes a variety of Friday sessions that highlight compelling issues Coordinator: Michael McSheehan and innovative practices regarding Alternate Assessment While most students with labels of inclusive early education for young Thursday and Friday severe disabilities receive related services children with significant disabilities and Coordinator: Donna Lehr as part of their IEP, those supports are their families. The IDEA 97 requirement that all not typically planned to be nor are they students participate in state-wide provided in the general education 6Ripleyment systems of assessment has required classfoom. Come learn about the much work in each state on the design Thursday and Friday changing roles of related service provid- of alternate methods of assessment Coordinator: John Butterworth ers in supporting successful inclusion appropriate for students with severe Opening with an issues forum, the within the contest of school reform. disabilities. This focus area features employment focus area will highlight These interactive sessions will address sessions that explore the common issues policy developments, organizational promising practices of related service --and specific practices established in change strategies, and emerging support providers in designing the communica- individual states aimed assuring that practices that expand access to high tion and literacy supports for a student's students with severe disabilities are a quality careers. Join us for the Thursday meaningful engagement in general part of state accountability systems. Issues Forum and Luncheon Roundtablecurriculum. to define issues and strategies. Community Living Guardianship Alternatives: Melding Thursday and Friday "'coldly 1' ASI4 Values with Best 1t ractice Coordinators: Joe Wykowski and Patti Scott Thursday - Saturday Friday A diverse group of individuals and Coordinator: Ann Turnbull Coordinator: Dohn Hoyle agencies will share their stories and This focus area includes a variety of This focus area includes sessions that perspectives concerning how to live a topics that are especially relevant to discuss guardianship as the last civil rich community life using individual families and professionals who support rights frontier, an exploration of strate- support strategies, friendships, and the families. All sessions included in this gies for self-determination, issues related acquisition of affordable, accessible focus area are facilitated by at least one to wills and trusts, and practices in housing. family member. alternatives to legal guardianship will be discussed. Critical Ts edagogy and %elusion Focus on G overnment Affairs: Thursday and Friday Training Effective Advocates Inclusion Works Coordinators: Don Cardinal and Jacque Thursday Friday Thousand Coordinators: Liz Obermayer and Jamie Coordinator: Nancy Frey Critical pedagogy explores the ways in Ruppman Woodrow Wilson said, "I can't tell you which change is made in people's lives. A series of workshops, panel presenta- the right way to do the wrong thing." tions and activities that will help us all These ways don't necessarily fit with Continued on page 13 PARE 12 114 TASH CONNECTIONS, JULY /AUGUST 2001 IN-FOCUS AREAS 2001 hrVecus Areas schools and centers of entertainment 'Is a:1Nya Approaches to Supporting and rejuvenation. Continued from page 12 People with Complex Needs and/or Problem Behavior Multicultural: Including Culturally Thursday and Friday and Linguistically Diverse Individu- Coordinators: Rob O'Neill and Tim Knoster While practices labeled "inclusion" are als and ramifies This focus area includes presentations common, some are missing necessary Thursday and Friday that focus on concepts, principles, and elements. This focus area will examine Coordinator: Susie Schaefer strategies for implementing positive, what we know about successful inclusiveThe focus on ethnicity and cultural and, support approaches in school, practices, and the important aspects thatcompetency is necessary and appropriate home, and community settings. insure successful experiences for stu- in today's world. Sessions will offer dents, teachers, and families. information, discussion and sharing Postsecondary education: Same about issues faced by those seeking and Questions, New Setting Innovative Transition Practices for needing assistance and those interested Thursday in being responsive and inclusive. This Achieving Typical Adult Life Styles Coordinator: Caren Sax focus area will offer an opportunity for a Thursday - Saturday As more students graduate from inclu- diverse group of individuals to meet Coordinator: Pat Rogan sive high schools, many are eager to formally and informally. This focus area provides an array of continue their education at the exciting sessions that address positive postsecondary level. But the same approaches for transition from school toNot Dead VetNavigating the questions remain: how to access sup- adult life. Session topics include Slippery Slope ports; which provides and pays for the student-centered planning approaches, Thursday services; how to best access different innovative options for preparation for Coordinator: Stephen Drake classes and professors; how to learn adult lives, post-secondary education Not Dead Yet organizes the disability about the new system. Join us for a day opportunities, and collaboration with community's opposition to legalized of exploring questions, experiences, adult services and supports. assisted suicide/euthanasia. Every successful strategies, and remaining session in this focus area will give challenges as we move into the next Literacy information on current threats to the education frontier. Students, families, Thursday lives of people with disabilities and ways educators, and other professionals will Coordinators: Leonore Pelligrino-Sino and to organize and resist the assisted have much to learn as well as to share Amy Staples suicide/euthanasia movement. with those who are blazing yet another Literacy is a critical life skill. The past new trail. decade has marked a shift in research, A araeducator Issues practice, and learning. This focus area Thursday Removing the Barriers to run will offer participants the opportunity to Coordinator: Patricia Mueller hoclusk become familiar with current research, Topics in this focus area will address the Thursday best practices, and outcomes related to following issues related to Coordinator: Cheryl Jorgensen literacy instruction for all learners. paraeducators: schoolwide planning; Why is the realization of "full inclu- attributes of outstanding paraeducators; sion" so difficult when we know its Media, Meditation and Mediation: what administrators need to know about benefits? This focus area will take a Now Spirit Manifests in everyday hiring and supporting these staff, hard look at the barriers to inclusion Life training, and "hot topics" in the field of some of which we create ourselves Thursday "paraeducation". and offer strategies for addressing them. Coordinator: Maureen Keyes How do we manifest spirituality throughP reparing Personnel for Inclusive Research communication and relationship? Schools Thursday and Friday Everyone is welcome to join this focus Thursday - Saturday Coordinator: Linda Bambara area to learn about and share personal Coordinator: Lewis Jackson This focus area features sessions on experiences of spirituality from our Teacher preparation in the age of quality of life issues (e.g. inclusion, participation in families, communities, inclusion requires re-thinking University quality assurance and measurement, faith-based organizations. work places, curriculum. Presentations in this focus friendships, new roles of support staff) in area will offer practical strategies for this schools and communities. process. Continued on page 14 PAGE 13 1 5 TASH CONNECTIONS, JULY/AUGUST 2001 IN-FOCUS AREAS 2001 hrVocus Areas This is not a series on "how to",but Strategies for A roviding Inclusion rather an opportunity to explore, Support for Young Children with Continued from page 13 understand, seek new information and Intensive/Specific Needs to be challenged. Everyone is welcome, especially those who live with and Friday support people with autism in valued Coordinator: Brigitte Ammons School Based A rolessional Develop- ways. This focus area will provide sessions that ment: More A owerful Teaching offer specific strategies and techniques for including and supporting young Friday Self Determination children with significant disabilities in Coordinators: Janice Payne and Charles Thursday and Friday inclusive settings. Parents and profes- Fitzgerald Coordinator: Charles Moseley sionals are welcome as we discuss the Professional development is seen as one State systems of support for people with barriers to inclusion and strategies for of the key factors in successful school developmental disabilities are changing overcoming them. change and restructuring, improved to incorporate principles of self- outcomes for all students and access to determination at both policy and inclusive options for individuals with operational levels. This transformation Urban Issues diverse learning styles and abilities. We requires significant modifications in the Friday will explore different successful models structure and functioning of existing Coordinator: Elizabeth Kozleski of school based professional develop- programs to enable people receiving The National Institute for Urban School ment and success implications for support to take control over the finan- Improvement is hosting this year's urban training and retaining the best and cial and support related decisions that focus area. We hope that you will join brightest to teach our children and affect their lives. This focus area will us in conversations around systemic youths. Join this focus area as we discuss implementation from the change, family involvement, policy continue to learn together. perspectives of individuals from development, and strategies for practice different states who are involved in the improvement at the classroom and School-wide A ositive Behavior process of change. The presentation willbuilding level. We have invited a group identify challenges faCed by states of practitioners, administrators and Support researchers to join us in this exploration. Friday making the change to person-centered, individually controlled systems of Please drop in during the day and be Coordinator: Rob Homer part of the discussion of lessons learned This strand will include five sessions support; management and administra- tive actions that facilitate the change in large, multi-cultural, complex school addressing current practices and recent systems. results from schools across the country process, and barriers that must be removed. that are working on implementing Voices of Friendship positive behavior support throughout the Friday whole school. Rob Homer, Wayne Sexuality Coordinators: Carol Tashie, Zach Rossetti, Sailor, Lisa Cushing, Rick Albin and TimThursday and Friday and Jeff Strully Knoster will each present 1-hour sessions Coordinator: Wanda Blanchett This all-day focus area is designed to that address strategies for making schoolsSexuality and sexual expression are pose the question and explore the more behaviorally inclusive. Specific natural parts of each of our lives. For attitudinal and educational barriers-to topics will include the challenges faced many individuals with significant friendship that continue to exist, even in by urban schools, the development of disabilities, access t complete and schools that include students with positive school-wide social cultures, accurate information regarding issues of disabilities in general education classes. designing function-based support for sexuality is not readily available. To Strategies to avoid and overcome the individual children, and policy chal- ensure that the sexual rights of individu- barriers, as well as approaches to lenges for the future. als with disabilities are acknowledged and respected, these sensitive and facilitate meaningful relationships critical issues require awareness, respect, between students with and without Seeking to Understand Autism in disabilities, will be discussed. Different Ways and a commitment to ensure all people have the information needed to act Thursday and Friday upon their interests, preferences, and Look for additional focus areas on the Coordinator: Jeff Strully choices. following topics: Ethics and Rights, This focus area is meant to provide a Creative and Performing Arts, and deepening of our understanding of Special Health Care Needs. autism from many different perspectives. 1 -11- C.) PAGE 14 TASH CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS 2001 TASH Speakers: Elizabeth Erwin, Leslie C. Topic Area: Inclusive Education/ Soodak, Georgia Atkins Personnel Preparation CONFERENCE Speakers: Gwen Beegle, Megan S. Cote, Killing Without Consent I- The CasesSusan Bashinski, Joe Porting, Donna R. BREAKOUT of Tina Cartrette and Robert Wickham, Ruthie Mendocinos Wend land SESSIONS Topic Area: Euthanasia Resistance Collaborative Teaming to Support Speaker. Vincent Fortenasce, Stephen Students With and Without Disabili- Drake ties in General Education Classrooms Thursday, November 15 Topic Area: Inclusive Education Parent Transformational Outcomes Speakers: Pamela Hunt, Anne C. Smith 10:30-am 11:30 am When a Child has a Disability: Parent Living Free: Campaign for Freedom Reports and Research Findings Systematic Reading Instruction for Topic Area: Advocacy Topic Area: Family Diverse Learners Speakers: Michael Taylor, Elizabeth Speakers: Lorraine Wilgosh, Kate Topic Area: Literacy Obermayer, Dan Dotson, Tracy Wright, Phil Weintraub, Judy Volkman Scorgie, Richard Sobsey Speakers: Jennifer Butterworth. Sheri Keel Listening to the Experts From the Inside Out; Creating Supports for Families A Guide to Schoolwide Planning for Topic Area: Autism Topic Area: Family Paraeducator Supports: A Pilot Study Speakers: Robert Cutler, Susan Rubin, Topic Area: Paraprofessional Peyton Goddard, S. Hap Hinkle Speakers: Kathy Ballard, Lisa Steward Speaker: Michael F. Giangreco A Year Later Assessing the General Curriculum Topic Area: College Through Adaptations and Assistive Inclusive Teacher Preparation: Ensur- Technology or "How Am I Going to ing Success for ALL Speakers: Caren Sax, Jeffrey L. Strully Teach THAT?" Topic Area: Personnel Preparation Topic Area: General Curriculum AccessSpeakers: Susan Leonard-Giesen, Our First Ten Years of Facilitated /Assessment Technology Communication: Close Encounters Marquita Grenot-Scheyer Speakers: Michael Burdge, Anne After Twenty Years Denham, Jean Clayton The Effects of Functional Assessment Topic Area: Communication Information on the Behaiioral Sup- Speakers: David Marcus, Eugene First Things First! port Recommendation Marcus Topic Area: Governmental Affairs Topic Area: Positive Approaches Speakers: Elizabeth Obermayer, Speaker: Richard Albin Opening Doors to the Community Jacqueline Golden Through The Use of Augmentative Tearing Down the Barriers to Full Devices Inclusion: Beginning with Ourselves Topic Area: Community Living / "We're Hangin"Em out to Fail?": The Impact of Standards-Based Topic Area: Removing Barriers to Full Communication Reforms on Special Education and Inclusion Speaker: Cynthia Hennessy Student with Disabilities Speaker: Jeffrey L, Strully Topic Area: High School Inclusion/ You Have Questions? So Do We! Special Ed Policy Teaching Support Staff to be Respon- Practical Problem Solving Approaches Speaker: Bud Cooney sive Listeners to Facilitate Self- for Anyone Interested in Supporting Determination Meaningful Lives Real and Perceived Inclusion in Topic Area: Research/Self-Determina- Topic Area: Community Living / tion Housing / Self-Determination Schools: Dark Ages or Bright Future? Topic Area: Inclusive Education/ Speakers: Freya Koger, Linda Bambara Speakers: James Meehan, Gail Fanjoy, Sally Sweeney Urban Education Speaker: Susan Turben Preparing Students with Significant Disabilities for Healthy Sexual Lives Emerging Directions in Early Child- Topic Area: Sexuality hood Inclusion Research Collaborative, Consultation, Collabo- rative Results: Stories from Teaching Speakers: Wanda J. Blanchett, Topic Area: Early Childhood/Research Teams Pamela Wolfe Continued on page 16 PAGE 15 17 TASH CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS THURSDAY SESSIONS Developing a Peer Counseling for People Planning for the Future of Your Special Continued from page 15 with Developmental Disabilities Needs Child Topic Area: Advocacy Topic Area: Family/Financial Planning Speakers: Joe Meadours Speakers: Nadine Vogel Science Groups: Creating Space for All Students WeBCATT: We Build Communica- Person Centered IEP Planning: Topic Area: Social Justice / Research tion Access Through Technology Promoting Self-Determination for Speakers: Mary Fisher, Sara McGrew Topic Area: Assistive Technology Parents and Students Speakers: Sandra Alper, Charlotte Mull, Topic Area: Family S.R.I. (Somato Respiratory Integra- Delann Soenksen Speakers: Amy Lynn Childre, Cynthia tion) Chambers Topic Area: Spirituality Listening to Families Speaker: Beth Lakretz Topic Area: Autism / Family Things that Worked and Things that Speakers: Barbdra Cutler, Connie Lapin Didn't Families and the Transition Process Topic Area: Governmental Affairs Topic Area: Transition / Family Quiet Advocacy and the Acquisition ofSpeakers: Robert Sneirson, Bill Coffelt Speakers: Barbara Buswell, Elisabeth AAC for Culturally Diverse Families- Healey A Case Study Linking Standards-Based Instruction Topic Area: Communication/ and Authentic Performance Multicultural Assessment Thursday, November 15 Speaker: Shannon McCord Topic Area: Inclusive Education / 10:30 am 12:45pm Assessment Community Member Forums: Speakers: Mariel Zeller, Jacqueline Understanding the Relationship Empowering Community Members' Farmer Kearns, Michael Burdge between the Oppressed and the Accountability for Full Community Oppressor Inclusion Strategies for Collaborating to Differ- Topic Area: Critical Pedagogy Topic Area: Community Living/ entiating Instruction Speaker: Suzanne SooHoo Housing Topic Area: Inclusive Education/ Speakers: Angela Novak Amado, JackieCollaboration Employment Issues Forum Victorian-Blaney Speakers: Melanie Hammond Christian, Topic Area: Employment Melissa A. Brown Speakers: John Butterworth, Michael Supported Living; Supporting Choices Callahan in Living Inclusion Teacher Survival 101: A Topic Area: Community Living/ Resource-Abundant Workshop for "Getting a Life" for Adults through Housing Novice Inclusion Teachers Individualized Funding and Self- Speakers: Laurie Snyder, Joanne Cain, Topic Area: Inclusive Education/ Determination Waltina Mansolillo, Carla Tankard Teacher Preparation Topic Area: Family/Self-Determination Speakers: Shawna Olson, Amy Speakers: Charles Moseley, Ann Transition Across Early Intervention Hanreddy Turnbull, Doug Gragson Contexts: Family Challenges and Professional Practice Issues Families Speak Up Resources and Best Practices for Topic Area: Early Childhood / Family Topic Area: Inclusive Education / Reaching and Serving Culturally and Speakers: Crystal Ladwig, Melinda College Linguistically Diverse Families Morrison Speakers: Barbara McKenzie, Candee Topic Area: Multicultural Basford, Katie Basford Speakers: Betsy Santelli. Theresa Killing Without Consent II - Tracy Cooper, Sweet Alice Harris Latimer and Others - and How Their Teaching Literacy Skills to Students Murders are Exploited by Pro-Eutha- with Severe Disabilities in General nasia Groups Education Classrooms Thursday, November 15 Topic Area: Euthanasia Resistance Topic Area: Literacy Speakers: Dick Sobsey Speaker: June Downing 11:45 am 12:45 pm 113 Continued on page 17 PAGE 16 TASK CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS THURSDAY SESSIONS Topic Area: Social Justice / Inclusive Imaging Inclusive Education for Continued from page 16 Education Students with Autism: "We Have to Speaker: Philip R. Smith Start with Inclusion and Work it Out As We Go" French Fries or Friendship Facilitation: Professional Renewal in Spiritually Topic Area: Autism Which Paraeducator Characteristics are Centered Leaders for Justice and Speakers: Christi Hendrickson, Alicia Valued by Schools? Equity Broderick Topic Area: Paraprofessional/Qualita- Topic Area: Spirituality / Inclusive tive Research Education Creating Access to Postsecondary Speaker: Deborah P. Goessling Speakers: Maureen Keyes, Ron Taylor Education for All Youth Topic Area: College/Postsecondary Bridging the Gap Between Best Working Towards Independence: Education Practice and Current Practice: Strategies for Releasing the Grip Speakers: Debra Hart, Karen Zimbrich Preservice Teacher Preparation in the Topic Area: Teacher Development / Age of Inclusion Inclusive Education Inclusive Recreation and Leisure for Topic Area: Personnel Preparation Speakers: Margaret Stout, Sara Egorin- Youth Speakers: Heather C. Young, Barbara Hooper Topic Area: Community Living/ Gruber Housing Transition Service Integration Model: Speakers: Esther Onaga, Steve Positive Behavior Support and the Integrating Public Schools, Rehabilita-Youngblood Family. Research Outcomes and Socialtion and Developmental Disability Validation System to Produce a Seamless Transi- Come Play With Me: Strategies that Topic Area: Positive Approaches/ tion Work for Young Children who are Research Topic Area: Transition Deaf-Blind Speakers: Mendy Boettcher, Erin Speakers: Nicholas J. Certo, David Topic Area: Early Childhood / Family McNerney, Lisa Fan, Rachel Fan; Noyes, Caren Sax, Denise Mautz, Holly Speakers: Melinda Morrison, Crystal Robert Fan, Robert Koegel, Lynn Kern Wade, Kimberley Smalley, Richard G. Ladwig Koegel Luecking What is the Natural Supports Research Tearing Down the Barriers to Full Thursday, November 15 Telling Us About How We Provide Inclusion: Low Expectations and the Employment Services and Improve Myth of Mental Retardation 2:15 pm 3:15 pm Employment Outcomes? Topic Area: Removing Barriers to Full Topic Area: Employment Inclusion/Inclusive Education YouthSpeak: Taking Charge, Chang- Speaker: Teresa A. Grossi Speaker: Zachary Rossetti ing Images! Topic Area: Advocacy Coalitions - Natural and Unnatural Facilitating Social Interaction of Speakers: Deborah A. Gilmer, Janet Allies in Fighting the Assisted Adults with Developmental Disabili- May, Bonnie Robinson, Elijah Steward Suicide/Euthanasia Movement ties in the Community Topic Area: Euthanasia Resistance Topic Area: Research / Staff Training/ Let's Talk Partners Speakers: Lillibeth Navarro, Michael Adult - Topic Area: Advocacy Bailey Speakers: Ophelia N. Gomez, Linda Speakers: Michael Bailey, Catriona Bambara Johnson Beat the Clock: Enhancing Your Child's Quality of Life While Know- Relationships, Friendships, and the Inclusive Strategies Using Assistive ing that Death May Be Imminent Community: Person-Directed Plan- Technology: Bringing AT into Regu- Topic Area: Family ning as a Guide for Full Participation lar Education Curriculum Speakers: Tricia Luker, Calvin Luker Topic Area: Self-Determination/ Topic Area: Assistive Technology Creative/Performing Arts Speakers: Debra Bauder, Deb Case, Inclusion in School is Always Good Speakers: Paula Bohiand, Robin Dean Thomas J. Simmons for Everyone Topic Area: High School Inclusion Disability Studies: What It Means for Ethics and Values of Behavior Change Speakers: Kevin Wagner, Anita Wagner Inclusive Education Topic Area: Autism/Ethics Speaker: Larry Douglass Continued on page 19 PAGE 17 119 TASH CONNECTIONS, JULY/AUGUST 2001 JULY/AUGUST 2001 THE EDUCATION CORNER If you have a child with a A major goal of this law is to Parents may have questions disability and you want more improve educational results for answered by calling toll-free 1- information on special educa- children with disabilities and to 888- 248 -0822 or by sending an e- tion laws and services, or if you make sure that schools focus on mail to [email protected]. are a professional who works high expectations for these children. with families of children with In order for children with disabili- Web site (wwwfape.org) with disabilities or those having ties to reach their full potential, it isinformation about IDEA '97, difficulty in school and you important for parents to learn aboutincluding Spanish and Hmong want to learn more about changes to the law and how the translations of some materials special education, the Families changes will affect their children. and Advocates Partnership for How can FAPE help? FAPE pro- referrals to national, state, and Education (FAPE) can help. vides: local disability organizations and FAPE is a national project advocates which informs families and written information about IDEA advocates about the Individuals '97 referrals to a nationwide net- with Disabilities Education Act work of parent training and of 1997 (IDEA '97). : technical assistance on IDEA '97. information centers and commu- nity parent resource centers. Are you looking for Z so los o comprehensive s. . I II staff development options? I. I s .osI:-I ©Triplicity an administrator's guide to mentoring paraeducators ©Paraeducators: LifeLines in the Classroomsix training modules for new and returning paraeducators ©Melding a training module and guide for partner teachers working with paraeducators ©Maxim- aguide for linking functional-contextual assessment to instruction ©Students Firsta training module for parents as partners in the Special Education process Visit our web site or call to learn www.lrconsulting.com more about ordering materials, our PMB 747 POB 6049 training-of-trainers workshops, and Katy, TX 77491-6049 hosting a TOT in your district. PH: 281-395-4978 onsultingFax: 281-392-8379 12 PAGE 18 TASH CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS THURSDAY SESSIONS Speaker: Carol Tashie Community Building in Your Diverse Continued from page 17 Death in California? Life Outcomes forClassroom: Creating Healthy, 2,300 Coffelt Movers from Inclusive Environments in Elementary Institutions in California Schools Topic Area: Research/Community Topic Area: Inclusive Education / Friendship Empowering Peers to Image Their Living Future: Student Leadership and Peer Speakers: James W Conroy, Mary Speakers: Kristen Goldmansour, Beth Tutor Training in Secondary Schools Hayden, Jefferey X. Seiders Lakretz, Kim Conger, Diane Ripple Topic Area: High School Inclusion Speakers: Pam Villalobos. Lori Eshilian,Teaching Self-Determination Via Connecting Families of Diverse Deborah L. Tweit-Hull Vocational Choice Making Cultures to Inclusive Education Topic Area: Self-Determination / Topic Area: Multicultural Service Learning: Maximizing Employment Speaker: Ginette Goldfeld Inclusive Opportunities Speaker: James Martin Topic Area: Inclusive Education Teaching About Best Practices Speakers: Cynthia Chambers, Amy Exploring Media: Spiritually UpliftingTopic Area: Personnel Preparation Lynn Childre Insights from Contemporary Film and Speakers: Keith Storey, Sandra Alper, Television While Sharing the Epipha- Diane Browder, Janis Chadsey, June Hey, Why Weren't You at the Gym!! nies of Parenting and Educating Downing, Carolyn Hughes, Donna Lehr Topic Area: Leisure and Recreation/ Children with Disabilities The Elusive Nature of Social and Self-Advocacy Topic Area: Spirituality/Media Speakers: Ron Taylor, Maureen Keyes Sexual Intimacy for Young Adults Speakers: Michael Shanzer, Beth with Significant Disabilities Shanzer Access to General Education Curricu- Topic Area: Sexuality/Sexual Expres- sion The Honoring of Diversity in Reading lum in Iowa: The Battle of Local Speakers: Holly Wade, Shelly Rodgers, Instruction Control Topic Area: Statewide Alternate Nicholas J. Certo Topic Area: Literacy Strand Speakers: Christie Ranelle, Elizabeth Assessment Speakers: Kathy Davis, Sandra Alper, Willis Thursday, November 15 Martin Agran, Mike Cavin 3:30 pm 4:30 pm Principal's Paraeducator Priorities Providing Community Based Transi- Topic Area: Paraprofessional The California Community Imperative tion Services for Students 18-22 Speakers: Mary Lasater. Marlene "A Turning Point" Conference Topic Area: Transition / Self-Determi- Johnson Topic Area: Advocacy nation Speakers: Bill Coffelt, Terry Boisot, Speakers: Eileen Medina, Judy Dob- Reaching Rural Areas: Field-Based Mark Polit, Bonnie H. Shoultz bins, Marylynne Shields, Duanne Teacher Preparation Turner, Alex GeffIcen Topic Area: Personnel Preparation/ When the World Wide Web Wasn't Teacher Preparation (And Largely Still Isn't) Speaker: Mary Beth Doyle Thursday, November 15 Topic Area: Assistive Technology 2:15 pm 4:30 pm Speakers: Eric Chapman, Alan Parks Practical Strategies to Address Prob- lem Behaviors Real Life Self Determination An Evaluation of Life Satisfaction Topic Area: Positive Approaches Topic Area: Community Living / Self- from the Perspective of Individuals Speakers: Vivian M. Perez-Kennedy, Determination Receiving Supported Living Services Kathryn D. Peckham-Hardin and Their Significant Others Speakers: Joe H. Wykowski, Patti Scott Topic Area: Community Living/ Tearing Down the Barriers to Full Housing Taking Action Inclusion: The Effects of 'Pull-Out' on Speakers: Maryam Abedi, Kathryn Topic Area: Governmental Affairs Community and Learning Edwards, Lori Leak Topic Area: Removing the Barriers to Speakers: Jamie Ruppmann, Bonnie H. Full Inclusion Shoultz 121 Continued on page 21 BEST COPY AVAILABLE PAGE 19 TASH CONNECTIONS, JULY/AUGUST 2001 CONFERENCE EXHIBITS 2001 TASH CONFERENCE EXHIBITS The TASH Conference Center on Human Policy promises to be the place to Community Partnerships, Inc. r host over 2,200 of your Disability is Natural 11 jacemus NAIR customers! Each exhibitor will Discovery Toys pestkipalon receive three conference registra- DynaVox Systems (1;k7.1. tions, a complete booth package, Greenhouse Publications TASH discounted hotel and airline Peak Parent Center rates, and the opportunity to capture Social Security Administration an audience interested in the innova- Super Duper Publications tive services, products, and informa- Trips Inc. Li tion available to assist people with The Nth Degree disabilities. And don't forget this value-added feature available to Added exhibit features to maximize TASH exhibitors: your company traffic in the Exhibit Hall: name, booth number, and a list of up to five products or services on Exclusive exhibits-only time TASH's web site at no extra cost! during the conference Thursday evening reception Plan to join us in the Exhibit Hall honoring the TASH Positive Images fo-r the Thursday evening reception Awards winners honoring the TASH Positive Images Conference Registration and Awards winners. The Exhibit Hall Information areas located just will be filled with exhibits of the outside of the Exhibit Hall products, publications, and services Continental breakfast during the TASH conference attendees are Saturday morning exhibits and To obtain an exhibitor looking for. Another special event poster sessions application or for more scheduled for the Exhibit Hall is a information contact Rose silent auction, hosted by Cal-TASH, on Friday evening. Exhibit Schedule Holsey at 1-800-482-8274, ext. 100 or send an e-mail to We welcome back many vendors Exhibit Set-Up: [email protected] familiar to our attendees, and we are Thursday, November 15, 2001 7:00 AM - 10:00 AM pleased to have many newcomers V1 joining us in Anaheim. Plan to do Exhibit Hours: some early holiday shopping with Thursday, November 15, 2001 us! 10:00 AM- 1:00 PM 2:30 PM - 6:00 PM Some of the many exhibitors to be seen at the 2001 TASH conference Friday, November 16, 2001 include: 8:00 AM- 10:30 AM I 1:30 PM - 7:30 PM Adrian's Closet : APSE Saturday, November 17, 2001 Aurora Ministries 8:00 AM- 12:00 PM Brookes Publishing Exhibit Breakdown: :Canine Companions for Saturday, November 17, 2001 f. Independence 12:00 PM - 3:00 PM +Capacity Works 122 PAGE 20 TASH CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS THURSDAY SESSIONS Crackerbarrel: Paraeducator School to Adult Life: Alma's Story Continued from page 19 Special Interest Group Topic Area: Transition 0Topic Area: Paraprofessional Speakers: Rachel Quenemoen, Alma Speaker: Patricia H. Mueller Quenemoen, Sandra Thompson Stewarding One's Own Path to Em- ployment Collaborative Community Partnership Topic Area: Positive Approaches/ Topic Area: Employment/Self-Determi- Thursday, November 15 Advocacy nation 3:30 pm 5:45 pm Speakers: Jill Broadbent, Sharen Speaker: Marsha Threlkeld Bowen, Lynne Patterson Supporting People to Live Real Lives Topic Area: Autism Media and Politics - Meaning, Money, Determining Approaches Psychiatric Speakers: Dorothy Farrell, Laura and the "Right" to be Killed Supports for Adults with Significant Topic Area: Euthanasia Resistance Cognitive and Physical Broderick, Cindy Strully, Jennifer Lengyel Speaker: Cyndi Jones, Stephen Drake Topic Area: Related Services Speaker: Lori Noto Parent to Parent: A Resource for Communication Services and Supports for Persons with Severe Disabilities Families and Professional Tearing Down the Barriers to Full Topic Area: Family Inclusion: Communication Supports Topic Area: Communication Speakers: Betsy Santelli, Florene for Inclusion That Works Before We Speakers: Martha Snell, Pat Mirenda Poyadue "Know What They Know" Topic Area: Removing the Barriers to The Criminal Justice System and You: Practical Strategies for Adapting Full Inclusion An Introduction for Self-Advocates Curriculum within the Inclusive Speaker: Rae Sonnenmeier Topic Area: Criminal Justice / Advo- Classroom cacy Topic Area: Inclusive Education Meeting the Needs of Children with Speakers: Alan Kurtz, Helen Bailey, Speakers: Karen Warne, Monica Autism Spectrum Disorders: How Alan Hammond, Lenny Berry, Kathy Son Agpaoa-Gonzales Well Are We Doing? Topic Area: Research / Autism Realize the Possibilities: Inclusion Use of Alternative Assessment to Speaker: Stacy Dymond Facilitate Inclusive Options for ' Advocacy Strategies for Families Topic Area: Inclusive Education/ Students with Severe Disabilities Helping Students Find Their Voice: Topic Area: Inclusive Education/ Teaching Self-Determination in a Family Assessment Rural High School Speaker: Beth Schaffner Speakers: Kathryn D. Peckham-Hardin, Topic Area: Self-Determination/High Margo M. Yunker School The Orange County Full Inclusive Speakers: Vicky Piland, Bruce M. Preschool Project Creating Inclusive Summer Programs Menchetti Topic Area: Inclusive Education / Early for Children that Educate Children Childhood About Diversity Exploring the Components of Speakers: Jan S. Weiner, Abby Topic Area: Inclusive Education Spirituality & Disability Rozenberg, Catherine Titus, Lara Hunter Speakers: Karena Cooper-Duffy, Kathy Topic Area: Spirituality Blossfield, Dianne Prohn Speakers: Kathryn O'Connell, Bonnie H. Shoultz, Maureen Keyes, Ron TaylorThursday, November 15 Postsecondary Opportunities for 4:45 pm 5:45 pm Individuals with Disabilities: A Supporting A First Year Teachers Dialogue Between Program Based and Journey Toward Enacting Accessible United We Stand, Together We Get Individual Support Models of Services Curriculum Nowhere Topic Area: Inclusive Education/ Topic Area: Teacher Development Topic Area: Advocacy College Speakers: Shoshana Reiss, Britt K. Speakers: Meg Grigal, Cate Weir, DebraHamre Speakers: Susan Baker, Leslie Wilson, Neubert Terry Berkley 1. r' 3 Continued on page 22 PAGE 21 TASH CONNECTIONS, JULY/AUGUST 2001 THURSDAY SESSIONS THURSDAY SESSIONS Planning for Successful Transitions "Shame on You! You're Using the "R" Continued from page 21 from Elementary to Middle School Word, And He's Only 14 Years Old" Topic Area: Inclusive Education/ Topic Area: Transition / Family Middle School Inclusion Speaker: Richard Cozza LETTING GO: A Journey for Speakers: Mary Kathryn Wahl, Patricia Families and Self-Advocates K. McDaid, Lisa Pompei Helping Students Successfully Transi- Topic Area: Community Living/ tion from School to the Community Advocacy Provision of Educational Support to Topic Area: Transition Speaker: Lynda Baumgardner Students with Disabilities in Two-year Speakers: Victoria Dunlop, Paula Rush, Postsecondary Settings Diane Kime, Irene Perry The Family As A Seminal Support to Topic Area: Inclusive Education; School and Community Inclusion: A College/Transition Self-Advocacy and the Individualized 15 Year Journey Speakers: Tom Harding, Teresa Whelley Education Program (IEP) Topic Area: Community Living/ Topic Area: Transition Uniqueness of Asian Cultures and Family Speakers: Carol R. Denson, Jacquelyn Speaker: Daniel Dickman Linguistic Diversities Awareness Gallagher, Diane Merrill Topic Area: Multicultural Implementing Self-Management in the Speaker: Yvone Link More than a Laughing Matter: Per- Workplace and Community spectives on Humor in Families Topic Area: Community Living/ Tearing Down the Barriers to Full Having Children with Disabilities Housing Inclusion: Indicators of Full Inclusion Topic Area: Urban Education Speakers: Michal Post. Keith Storey Topic Area: Removing the Barriers to Speaker: Alicja Jarzab Full Inclusion Building Working Relationships with Speaker: Cheryl M. Jorgensen Local One-Stops Topic Area: Employment Giving Voice to Students with Speaker: Norine Jalov.-ay Disabilities who have Successfully Transitioned to College Fighting for our Future - Resisting Topic Area: Research / Inclusive Peter Singer, Personhood, Futility and Education Speakers: Deborah Durham Webster, oundtabli the "Duty to Die" Luncheon Topic Area: Euthanasia/Ethics Pete Flexer Speaker: Stephen Drake An Examination of the Social Inclu- sion of Individuals with Disabilities in Image 2002: We Are The Family Religious Settings Thursday, Nov. 15, 1:00 - 2:15 pm Topic Area: Family Topic Area: Spirituality Speakers: Pearl Wollin. Joan Carter, Speakers: Pamela Lamar-Dukes, Here are just a few of the interesting Lisa Anderson topics that will be featured at Thursday's Charles Dukes Roundtable Luncheon: Governmental Affairs Parents' Impressions of Standards- Crackerbarrel Systems Change and Based Education for Student with Employment Outcome Topic Area: Governmental Disabilities: Challenges, Rewards, Affairs As a follow-up to the opening forum, join and Suggestions for School Reform members of the Employment Committee to Speakers: Bonnie H. Shoultz Topic Area: Students who Challenge discuss trends and issues in systems change, Schools But Do Not Have Labels of with a goal of defining strategies for The Impact of Inclusive Community- "Severe" Disabilities/Inclusive promoting expansion of employment Based Instruction on Students with Education opportunities at the state and local levels. Varied Abilities in a High School Speakers: Stephanie Squires, Christine Postsecondary Choices and Topic Area: High School Inclusion / Templet Challenges Inclusive Education Join Caren Sax and others for an informal Speaker: Michele Flasch Ziegler discussion over lunch to "chew on" the topics presented in the fidl-day focus area on access to postsecondary education. PAGE 22 TASH CONNECTIONS, JULY/AUGUST 2001 JULY/AUGUST 2001 TASH's work is dependent on the financial support of our members. We wish to acknowledge the generous assistance of our newest lifetime members Kim Be loin - Grafton, Wisconsin Sheila Romano - Naperville, Illinois Robert Shepard - Castaic, California Lifetime membership entitles you to full international and chapter member benefits for your lifetime. The cost can be remitted over several monthly payments. If you are interested in becoming a lifetime member of TASH, please contact Rose Holsey at 410 -828- 8274, ext. 100. Thanks, too, to the gracious donations of the following individuals: Cynthia Azama Beatrice B. Fink Center for Community Support Patty McCague Linda Cole Lotte Moise Karen Davis Anne Mitchell June Downing Margaret Morone-Wilson Maxine L. Epperson Susan Nadworny - The TASH Annual Conference is already a great value. But if you Callfor want to stretch your conference dollars even farther, share some Conference of the work with us, and well help with some of your expense! Volunteers! We make it even easier for you to attend the TASH Conference! Just volunteer 10 hours and you'll receive FREE conference registration (a $79-$369 value depending on your registra- tion category). When you think TASH conference volunteer, think interesting, stimulating and fun! That's because many of the conference volunteer assignments involve one-on-one interaction with other attendees, presenters and exhibitors. Whether you volunteer to engage our youngest conference attendees by assisting at child care, (Club TASH Child Care Volunteers), assist - keynote speakers at the General Sessions (General Session Volunteer), or help attendees in getting registration packets and other handouts (Registration Volunteer), you will enjoy the time that you spend as a TASH conference volunteer. We have volunteer tasks and times to fit almost any schedule. There are even pre-conference volunteer assign- ments available in case you arrive in Anaheim a little early. Don't delay! Volunteer assignments are made on a first come, first served basis. Contact Priscilla Newton, Volunteer Coordinator, at 410-828-8274, ext. 102 or send an e-mail to [email protected] and request a volunteer registration application today. 4.- 3' PAGE 23 TASH CONNECTIONS, JULY/AUGUST 2001 FRIDAY SESSIONS Tools for Navigating the Emotional Perceptions of Inclusive Education Held 2001 TASH Journey: Creating a Parenting Vision by General Education Teachers in Hong Topic Area: Family Kong, Taiwan, and US CONFERENCE Speaker: Lisa Lieberman Topic Area: Multicultural/International Issues SESSIONS Voices of Friendship: Why is it Still Speaker: Ming-Gon John Lian an Elusive Dream? Topic Area: Friendship Using Collaborative Partnership Speakers: Jeffrey L. Strully, Carol Research as a Tool for Training School Friday, November 16 Tashie, Zachary Rossetti Topic Area: Personnel Preparation/ 8:00 am 9:00 am Inclusive Education Introduction: Alternatives to Speakers: Louis Gurecka, Pamela Gent, Eight Steps to Effective Implementa- Guardianship Richeal Anderson, Judy Heasely tion of Alternate Assessments Topic Area: Guardianship Alternatives Topic Area: Alternate Assessment/ Speaker: Dohn Hoyle In Their Shoes: Teachers Learning Positive Approaches from Students with Disabilities Speakers: Sandra Thompson, Rachel Standing on Your Own Legs: A Topic Area: Personnel Preparation Quenemoen Writing Portfolio as a Way to Facili- Speaker: Robin Smith tate Composing for Culturally and Leveling the Playing Field with One- Linguistically Diverse Students Quality of Life through Opportunity to-One Computing Topic Area: High School Inclusion Development Topic Area: Assistive Technology Speaker: Ewa Jarzab Topic Area: Positive Approaches Speaker: Jerry Crystal Speaker: Christopher teKampe Moving From Self-contained, Segre- The Invisible Victims: Crime and gated Models to Inclusive Models BIGGER IS BETTER: How to Assist Violence Against People with Topic Area: Inclusive Education/ Someone to Create a Bigger Life for Disabilities Teacher Development Themselves and Decrease Behavioral Topic Area: Criminal Justice Speaker: Jennifer J. Coots Excesses in the Bargain Speaker: Daniel D. Sorensen Topic Area: Positive Behavior Support Collaborative School Practices Speakers: Karre Williams, Kimberley Early Childhood Topic Area: Inclusive Education Smalley Crackerbarrel Speakers: Amy Kuhns Bartlinski, Ann 11Topic Area: Early Harden Related Services in the General Childhood /Family Education Classroom Speakers: Elizabeth Erwin, Jamie Two Stories of Inclusion Topic Area: Related Services Ruppmann Topic Area: Inclusive Education Speaker: Michael McSheehan Speakers: Dianne Prohn, Karena Students with Disabilities Speak Out: Cooper-Duffy, Kathy Blossfield School-wide Positive Behavior Sup- National Focus Group Discussions on port: Systems to Support the Inclusion Supports and Barriers in Lifelong "What the heck is SCRUNCH day?": of All Students Learning and Employment The Creation of an Inclusive Middle Topic: School -Wide Positive Behavioral Topic Area: Employment / College School Supports Speaker: Teresa Whelley Topic Area: Inclusive Education/ Speaker: Rob Homer Middle School Inclusion Transition from School to Work for Speakers: Patricia K. McDaid, Lisa A Giant Agency Transfers Control: A Students with Ongoing Support Needs Pompei, Mary Kathryn Wahl Four Year Update on Implementing Topic Area: Employment Systems Change Using the Principles Speakers: Ellen Condon, Twinkle Key Elements of Building an Inclusive of Self-Determination Morgan, Norciva Shumpert School: Connecting Students with Topic Area: Self-Determination/ Disabilities to whole School Reform Systems Change Parents Empowering Parents Topic Area: Inclusive Education/ Speaker: James L. Dehem Topic Area: Family/Collaboration Urban Education Speakers: Kim Kruger, Brenda McInnis Speakers: J. Michael Peterson, Lynne Tamor Continued on page 25 PAGE 24 16 TASH CONNECTIONS, JULY/AUGUST 2001 FRIDAY SESSIONS FRIDAY SESSIONS Continued from page 24 Teaching Prerequisite Matching & Including Children with High and Object Permanence Skills to Those Low Support needs in Upper Elemen- Who Have Difficulty Communication tary Classrooms: The View from Imagine the Future: Would You Want with Pictures General and Special Educators to be an Adolescent with a Disability Topic Area: Communication Topic Area: Inclusion Works/Inclusive in an American High School Today? Speaker: Marilyn Chassman Education Topic Area: Transition Speakers: Martha Snell, Christine A. Speaker: Frank R. Rusch Facilitating Complete and Accurate Macfarlane Reports of Abuse in Children with Friday, November 16 Disabilities Creating New Possibilities: Family- Topic Area: Criminal Justice School Partnerships 8:00 am 10:15 am Speakers: Rebecca Nathanson, Joe Topic Area: Inclusion Works Crank Principles for Individual and Family Speaker: Barbara _Buswell Self-Determination Partnerships Teaching for Liberation: Lessons from Topic Area: Self Determination COLLEGE? Age Appropriate Options Inclusive Schooling and Critical Speakers: Laurie Powers, Ann Turnbull for 18-21 Year Students with Severe Pedagogy Disabilities Topic Area: Critical Pedagogy Topic Area: Inclusive Education/ Project ACTION Shares Successful Speakers: Paula M. Kluth, Rosario Employment Advocacy and Partnership Strategies Diaz-Greenburg, Jacqueline Thousand, Speakers: Lynn Quinn, JoAnn Topic Area: Advocacy Ann Nevin Genthner, Christine Lembach, Loisa Speakers: Rebecca S. Salon, Phyllis Bennetto, Sherry Stulpin Holton, Alvin Johnson, Robert The Overwhelming Power of Visual Kennedy, Germaine Payne, Ricardo Strategies for Improving Communica- Charlotte Alternate Assessment Thornton tion Model Topic Area: Early Childhood/Speech Topic Area: Inclusive Education/ Understanding Autism in New Ways Specialists Alternate Assessment Topic Area: Autism Speaker: Joan Green Speakers: Diane Browder, Kathy Fallin, Speakers: Anne Donnellan, Martha Stephanie Davis, Susan Griffin Leary Marketing Supported Employment Services Schools in Italy: Tomorrow, Today Living a Valued Life Topic Area: Employment/ Topic Area: Multicultural/Inclusive Topic Area: Community Living Speakers: Cammie Cloman, Deb Education Speakers: Laura Broderick, Jeffrey L. Skovron Speaker: Carol Berrigan Strully, Dorothy Farrell Time for Us: Maintaining Your Adult Sharpening the Saw: Maintaining Writing and Implementing Social Relationship When a Child has Cutting Edge Professional Skills in the Stories: I'm in Trouble Again and I Challenges Field Don't Know Why! Topic Area: Family Topic Area: Personnel Preparation/ Topic Area: Positive Approaches/ Speaker: Lisa Lieberman Professional Develop Inclusive Education Speakers: Donna R. Wickham, Megan Speaker: Susan Deluke Voices of Friendship: Essential S. Cote, Gwen Beegle, Susan Bashinski, Element Joan Houghton, Wendy Blaauw, Rachel Friday, November 16 Topic Area: Friendship Freeman 9:15 am 10:15 am Speakers: Zachary Rossetti, Carol Tashie Postmodernism and Special Education: Taking Leadership in School Reform: Valuing Faculty Diversity in Higher Examining and Including Key Steps Crackerbarrel: Alternatives Education Toward Achieving the Goals of Self- to Guardianship Topic Area: Personnel Preparation Determination for America's Students Topic Area: Guardianship Speakers: Valerie Owen, Patrick Topic Area: Advocacy Alternatives Schwarz, Pennie Olson, Paula K. Speaker: Thomas Holub Speaker: Mayer Shevin Neville, Terry Smith Continued on page 27 .1 7 PAGE 25 TASH CONNECTIONS, JULY/AUGUST 2001 CHILD CARE INFORMATION Kiddie Corp National Headquarters 10455 Sorrento Valley Road KiDDiE Suite 200 San Diego. CA 92121 TASH Conference Club TA5H Tel: 800-942-9947 CORPS Fax: 858-455-5841 We'll handle the kid stuff. Thank you very much for your interest in the TASH children'sprogram. Our goal is to provide your children with a program that they want to attend, while providingyou with that critical "peace of mind" feeling so that you can attend event activities. Kiddie Corp is pleased to provide a children'sprogram for TASH. Kiddie Corp is in its fifteenth year of providing high quality children's programs and youth services to conventions, tradeshows and special events. We take watching your children very seriously. Kiddie Corp has enjoyed long-timepartnerships with TASH, which has helped to establish Kiddie Corp asa premier provider of event children's program services. ACTIVITIES All activity planning is based around the program hours andages of the children. Activities include exciting themes, arts & crafts, group games, music & movement, boardgames, story time, dramatic play, etc. We provide activities appropriate for each age group, using safe, sturdy equipment thatyou can feel comfortable with. Children can make their own choices within Kiddie Corp'sprogram. COMMITMENT Our goal is to provide your children with a comfortable, safe and happy experience. Our staffto child ratios are high to ensure that every child feels special (1:2 infants; 1:3 toddlers; 1:5 schoolage). Kiddie Corp team members are selected according to their integrity, experience, educationand enthusi- asm. They must be wonderful with kids! You will feel extra secure knowing that the Kiddie Corp team is bonded and that we carry ample liability insurance. WHERE, WHEN, FOR WHOM The program is for children ages 6 months to 12 years ofage. The dates for the program are Novem- ber 14-17, 2001 and will be located at the Anaheim Marriott in Anaheim, California. Snacksand bever- ages will be provided and meals need to be supplied by parents or purchased when checkingyour child in each day. The nominal cost for this service is $2.00 per hour plusa $5.00 per child sign-up fee. REGISTRATION For a registration/consent form, please call 1-800-482-8274or email [email protected]. Space is limited, so registrations are only guaranteed if received by the pre-registration deadline(October 14, 2001). TASH/KiddieCorp must receive both the registration/consent form, childprofile form, and payment in full to hold reservations. Although every effort will be made to accommodate lateor on-site registrations, there is no guarantee that Kiddie Corp can accept children unless theyare pre-registered. NEED MORE INFORMATION? Kiddie Corp is always available by phone, fax, and e-mail toanswer any of your questions. Feel free to contact Kiddie Corp's program manager by phone at 858-433-1718, by fax at 858-455-5841or by e-mail at [email protected] 128 PAGE 26 TASH CONNECTIONS, JULY/AUGUST 2001 FRIDAY SESSIONS FRIDAY SESSIONS The Inclusive Charter School (CHIME) Topic Area: Family Continued from page 25 at California State University, Speakers: Ann Turnbull, Calvin Luker, Northridge Tricia Luker Topic Area: Teacher Development Moving Toward Supports in Decision- What Have We Learned About Speakers: Claire Cavallaro, June making as an Alternative to Guardian- Successful Inclusion and Authentic Downing, Julie Fabrocini, Delia Smith, ship Curriculum From 8 Wisconsin SchoolsPatrick Smith Topic Area: Guardianship Alternative/ Topic Area: Positive Approaches Self- Determination Speakers: Kim S. Beloin, Paula Dehart, Friday, November 16 Speakers: Duncan McNelly, Mary Sykes, Maya Fairchild JoEllen Anderson 12:15 pm 1:15 pm Usefulness of a Portfolio Process for Communication and Literacy Changing Times Educators in Inclusive Settings Supports: The New Possibilities of Topic Area: Advocacy/Positive Topic Area: Inclusive Education/ Inclusion Approaches Alternate Assessment Topic Area: Related Services Speakers: Cheryl Monk, Jerry Wooliver, Speaker: Ellin Siegel Speaker: Michael McSheehan Sherry Lookabill, Megan Seelye Academic Inclusive Momentum The Influence of Gender on Friend- Forensic Advocacy Services ship Expectations of Students in Project Topic Area: Advocacy/Criminal Justice Middle Schools Toward Peers with Topic Area: Inclusive Education Speakers: Kevin Farrar, Rebecca Treiber Severe Disabilities Speakers: Marlene Johnson, Mary Topic Area: Research Lasater New Strategies and Methods of Speakers: Janis Chadsey, Kyoung Gun Supporting People with Autism Han Organizing an Inclusive Classroom: A Topic Area: Autism Triangle of Supports Speaker: Sally Young Urban Schools and Positive Behavior Topic Area: Inclusive Education Support: Implications of Inclusive Speaker: Nancy Frey Systems The Images of Television Topic Area: School-Wide Positive Topic Area: Communication Getting Together and Organized Behavioral Supports Speaker: Gayle Gardner Topic Area: Multicultural Speaker: Wayne Sailor Speaker: John Sanford Promoting Awareness, Communica- tion, and Safety (PACS): A Partner- Community, Citizenship and Self- The Real Thing: Using a Case-Study Determination ship Between the Disability and Law Enforcement Communities Approach in College Classrooms Topic Area: Self-Determination Topic Area: Criminal Justice/ Topic Area: Personnel Preparation Speaker: Marilyn Kuna Communication Speaker: Cynthia F. Sutton Speakers: Jeffery Schwamm, Phyllis Social Supports for the Development Holton, Donti Mcfield Reclaiming the Power of the Heart, and Maintenance of Sexuality Knowl- Teaching and Inspiring Values for All. edge and Expression Social Inclusion in the Supported Can the Concept of Quality of Life Topic Area: Sexuality/Sexual Expres- Employment Workplace Make a Difference in the Lives of sion Persons with Disabilities? Topic Area: Employment/Transition Speaker: Charles Dukes Topic Area: Positive Approaches / Speakers: Jeanne Novak, Patricia Rogan Quality of Life Teaching Students to Support Them- Speaker: Anthony McCrovitz The Power of Creativity and Family in selves in Inclusive Education Shaping the Future Topic Area: Social Justice / Inclusive Communities Unlimited: Using the Topic Area: Family/Health Education Keys to Open the Doors Speakers: Martin Agran, Carolyn Speakers: Diane Hovey, Jessica Hovey Topic Area: Positive Approaches/ Hughes, Susan Copeland, Michael Community Development Wehmeyer Time Extensions as Reasonable Speakers: Cheri Novak, Paula Bohland, Accommodation in a State Rules Gary Robinson Promulgation Process - A Case Study 129 Continued on page 28 PAGE 27 TASHCONNECTIONS,JULY/AUGUST 2001 FRIDAY SESSIONS FRIDAY SESSIONS Friday, November 16 Topic Area: Assistive Technology Speakers: Thomas J. Simmons, Debra Continued from page 27 12:15 pm 2:30 pm Bauder, Preston Lewis Freedom of Speech over the Internet: Making it Accessible to All My Life - My Words Welcome to Our World of Choice Topic Area: Advocacy Topic Area: Autism Topic Area: Positive Approaches Speaker: Don O'Callahan Speaker: Mayer Shevin Speakers: Elizabeth Fussell, Tracy Berrong, Steve Jacobs, Mary Ann Planning for the Diverse Classroom Cooperative Learning: Learning and Schenk, Treva Maitland, Mary Dell Topic Area: Inclusive Educaton Playing Together in Inclusive Green, Pam Brandon, Lisa Manus Speakers: Linda Davern, Roberta F. Classrooms Schnorr Topic Area: Curriculum Behaviorist Heal Thy Self Speaker: Mara Sapori-Shevin Topic Area: Positive Behavioral Support Voices of Friendship: Barriers to Speakers: Kimberley Smalley, Karre Friendship Building Community Connections: A Williams Topic Area: Friendship Networking Approach for Transition Speakers: Carol Tashie, Zachary Age Students Measuring the Quality of Services: Rossetti Topic Area: Employment Making Sure Your Priorities are Met Speaker: Colleen O'Mara Topic Area: Research - Friday, November 16 Speakers: Sara Karon, Kristen Voskuil The Grassroots Consortium on 1:30 pm 2:30 pm Disabilities - Providing Community - The Ask Me Project: Consumers Based Services for Culturally Diverse Self Advocates March On the State Involved in Quality of Life Families House: Advocating for Change with Topic Area: Self Determination Topic Area: Family Legislators Speakers: Sarah Basehart, Tracy Speakers: Theresa Cooper, Luyen Chu, Topic Area: Advocacy/Governmental Wright, Gordon Bonham, Joan Alice Harris Affairs Rumenap, Linda Essenmacher Speakers: Carol Warner, Kim Daniels, Person Centered Planning as an Sue Ciappara, Phil Smith If I Can't Control My Money, It Ain't Alternative to Guardianship Self- Determination Topic Area: Guardianship Alternatives Involved Effective Parents in the EEP Topic Area: Self-Determination Speaker: Sally Burton-Hoyle Process Speakers: Gerald J. Nebeker, Marilyn Topic Area: Advocacy Bown Leadership for Inclusion and Public Speaker: Alison Seyler Purpose Topic Area: Inclusive Education/ Lessons of Thoughtful Action How to be a True Survivor - Tips and Leadership Topic Area: Teacher Development Ideas for Remaining Safe In Today's Speaker Diane Ketelle Speakersi Candee Basford, Pam Young, Busy and Sometimes Not So Safe Tag Fox, Tia Stryker World Practical_ Strategies to Assist in the Topic Area: Advocacy/Self-Determina- Inclusion of Children with Autism in Planning for the Future with a Little tion Elementary School Help from My Friends Speaker: Trish Baker Topic Area: Inclusive Education/ Topic Area: Transition/Self-Determina- Autism tion Pennsylvania's Performance Based Speakers: Judy Terpstra, Donna Del Speakers: Barbara Purvis, Colleen Model of Alternate Assessment Rio-D'Elia Thoma Topic Area: Alternate Assessment Speakers: Donna Lehr, Naomi Creating Inclusive Learning The Nuts and Bolts of Systemic Zigmond, Jill Greene Environments Using Multiple Change for Inclusive Practices in Intelligences Urban Schools Assessing Children's Assistive Topic Area: Inclusive Education Topic Area: Urban Education Technology Needs through Video Speakers: Christine Salisbury, Ann T. Speakers: Katie Johnson, Mary Falvey Conferencing Halvorsen 130 Continued on page 29 PAGE 28 TASH CONNECTIONS, JULY/AUGUST 2001 FRIDAY SESSIONS FRIDAY SESSIONS Topic Area: School-wide Positive Behav- Crackerbarrel on Critical Pedagogy Continued from page 28 ior Supports Topic Area: Critical Pedagogy Speakers: Lisa Cushing, Rob Homer Speaker: Donald Cardinal Spirituality & Sexuality: How the Transcending Traditional Services: Building Inclusive Schools: We Are Two Can Be Connected Strategies in Planning a Large Scale All the Thread and the Needle Topic Area: Sexuality Conversion Topic Area: Inclusive Education/ Speaker: Kathryn O'Connell Topic Area: Employment Urban Education Speakers: Ervin J. Picha, Cecelia Speakers: Janice Colliton, Bonnie Quit Passing the Buck Coverdale James, Sandy Widmer, Barbara Mick, Topic Area: Transition/Employment Tricia Coger, Brenda Vaughn, Carlos Speakers: Rita Skiles, Jerry Gronewold Positive Alternatives for Families Facing Lopez, Sasha Roberts-Levi, Lynne Disability Challenges: Empowering Tamor, Michael Peterson, Rich Gibson Parents in an Urban Community Friday, November 16 Topic Area: Family/Community At the Table: The Multicultural 1:30 pm 3:45 pm Involvemen Disabilities Network Washington Speakers: Michaela Farber, Ravita State 2001 Strategies for Providing Inclusion Maharaj, Jeffery Schwamm Topic Area: Multicultural Support for Young Children with Speakers: Susie Schaefer, Ginger Kwan, Intensive/Specific Needs Voices of Friendship: Further Ques- Regina Harris, Loxic Balthazen, Jenny Topic Area: Early Intervention tions to Ponder App, Steve Elliott Speakers: Diane Klein, Anne Marie Topic Area: Friendship Richardson-Gibbs, Brigitte Ammons Speaker: Jeffrey L. Strully The Effects of Combining a Teacher Support Program with a Master of CLEAR Progress in Inclusive Schools: The Power of Trusts as an Alternative to Arts and Education Degree Program Developing and Working with an Guardianship in Severe Disabilities on Graduate Inclusive Schools Leadership Network Topic Area: Guardianship Alternatives Students at Western Carolina Topic Area: Teacher Development/ Speaker: Dohn Hoyle University Inclusive Education Topic Area: Personnel Preparation Speakers: Ann T. Halvorsen, Linda Lee, Who Ya Gonna Call? State Technical Speakers: David L. Westling, Karena Heidi Bjorgan, Kristen Lombardo, Assistance Networks Cooper-Duffy, Kenneth Prohn Sandra Osborne Topic Area: Inclusion Works Speakers: Cheryl Liles, Carol Quirk Eye Listen - Do You? Topic Area: Positive Approaches Friday, November 16 Adapting Curriculum: Person #58 is Speakers: Mark Vincent, Scott Ryder 2:45 _pm 3:45 pm Paul Revere Topic Area: Inclusive Education/ Middle Communication and Literacy: Roles QualityMall.org: Person-Centered School Inclus of Related Service Providers and Services Supporting People with Speakers: Lisa Pompei, Patricia K. Educators Developmental Disabilities McDaid, Mary Kathryn Wahl Topic Area: Related Services Topic Area: Communication/ Speaker: Michael McSheehan Speakers: John G. Smith, Jerry Smith, Putting the Pieces Together: Statewide Angela Novak Amado Implementation of a Portfolio-Based Quality? Bahl Where is the "Con- Alternate Assessment System sumer Reports" Paradigm in Our The National Alliance for Direct Topic Area: Inclusive Education / Field? Support Professionals: Grass Roots Assessment Topic Area: Research/Quality of Life Efforts to Build a Stronger Workforce Speakers: Shaunna Crossen, Brian Choices Topic Area: Community Living Touchette, Janine Weber, Kellie Ander- Speakers: Ami Sullivan, James W. Speakers: Carole L. Thibodeau, son, Donald L. Peters Conroy, Sherry Beamer Marianne Taylor, Cliff Poetz Building a Positive Social Culture in Schools 131 Continued on page 31 PAGE 29 TASK CONNECTIONS, JULY /AUGUST 2001 JULY/AUGUST 2001 The World Congress & Exposition on Disabilities Sept. 28-30, 2001 um0S1710 Now in its second year, the World Congress & Exposition on Disabilities (WCD) presents a comprehensive forum to educate, inform, and provide a useful ex- change of ideas for persons with disabilities and special healthcare needs, as well as for family members, caregivers and those who work in the disabilities field. The event, scheduled for September 28 - 30 at the Georgia International Conven- tion Center in Atlanta, is organized by H.A. Bruno, LLC. The conference portion of the show, comprised of over 65 seminars, is produced by the EP Foundation for Education, Inc., a 501(C)3 not-for-profit organization. CME and CEU accreditation is available for many disciplines. Sessions on adapted physical education are sponsored by PALAESTRA magazine and the American Association for Active Lifestyles & Fitness (AAALF). Attendees will also have an opportunity to examine the latest products and services from more than 250 exhibitors representing pharmaceutical, computer. automotive, mobiliry, personal care, insurance, nutrition, and travel industries. WCD Special features will again include a career fair, a sports and recreation activity center sponsored by McDonald's Corp. and U.S. Disabled Athletes Fund, and an assistive technology learning center. For more information on WCD, visit www.wcdexpo.com or call 877-WCD-EXPO The Paraeducator Interest Group is seeking contact information from members who are interested in issues related to the employ- ment, deployment, training and support needs of paraeducators. If you are interested in issues related to paraeducators, please send an e-mail to Nancy Weiss at the TASH central office BEST COPYAVA1LAB PAGE 30 TASH CONNECTIONS, JULY/AUGUST 2001 FRIDAY SESSIONS FRIDAY SESSIONS Quality of Life: Are We Making A Status of Chanda Smith vs. Los Angeles Continued from page 29 Difference? Unified School District Consent Decree Topic Area: Transition Process Speakers: Adelle Renzaglia, Margaret Topic Area: Inclusive Education/ Gov- Hutchins ernmental Affairs Implications for Change: How to Speaker: Barbara Marbach Motivate Educators to Continue Friday, November 16 Project for Supported Living - STRIVE Teaching in Inclusive Classrooms 2:45 pm 5:00 pm Topic Area: Inclusive Education/High Program Topic Area: Leisure and Recreation School Multiple Intelligences in Inclusive Speakers: Veronica Moore, Liz B. Keefe,Classrooms: Teaching Strengths and Speakers: Peter Brown, Lori Rogers, Eddie del Rosario Standards Kaley Young, Cecily Merill, Katie Brennan, Noel Thompson Topic Area: Inclusive Education Inclusive Classrooms as Inclusive Speaker: Robin Smith Communities LIVE Experiencing Interactive Courses Topic Area: Inclusive Education/ Person-Centered Tools for Change: in "Severe Disabilities over the Internet Urban Education The CD-Rom - THE SEQUEL! Speakers: Lynne Tamor, Michael Topic Area: Community Living Topic Area: Personnel Preparation Peterson, Sandy Widmer, Sasha Roberts-Speaker: Jack Pearpoint Speakers: Fred Spooner, Martin Agran, Levi, Mishael Hittie, Sue Huellmantel, Richard Kiefer-O'Donnell Tanya Sharon Media Advocacy: Getting Our Issues into the Mainstream Self-Determination: An Interpretation Snakes and Ladders: An Exploration Topic Area: Media by People with Disabilities of the Intersection of Cultural Percep- Speakers: Jennifer Burnett, Janine Topic Area: Self-Determination _ tions of Disabilities, the Culture of Bertram-Kemp Speakers: Edna Bonham, Keith Bonham Schools (Special Education), and Preparing for Noah: How I Used a South Asian Americans Friday, November 16 Topic Area: Multicultural/Family Circle of Support to Prepare For The Speaker: Zara Dee Mehta Birth of My Son 4:00 pm 5:00 pm Topic Area: Advocacy Planning and Evaluating Classroom Speakers: Santa Perez, Colleen Thoma, Explaining What We Observe Builds Barbara Purvis Relationships That Lead to Better Supports Medical or Psychiatric Care Topic Area: Related Services If the Cure Isn't Found, Let's Look Topic Area: Advocacy/Health Care Speaker: Michael McSheehan Into the Future Speaker: Laurie Kimball Designing Function-Based Support in Topic Area: Autism Acceptability of Language Interven- Schools Speakers: Martha Leary Jeffrey L. tions: Teachers' Perception Topic Area: School-wide Positive Strully, Anne Dormellan, Mayer Shevin Behavioral Supports Topic Area: Communication Speaker: Richard Albin Family Support-What's Old, What's Speaker:- Yasemin Turan New Demanding Our Rights: The Fight by Topic Area: Family Reaching for the STARS Maine Self-Adocates to Keep the Vote Speakers: Fran Smith, Susan Yuan Topic Area: Community Living Topic Area: Self-Advocacy/ Speakers: Julie Silver, Marianne Taylor, Governmental Affairs Building Linkages between Assess- Minona Heaviland Speakers: James Oldenburg, Steve ment and Instruction: Outcomes- Porter Oriented Curricula Design for Stu- Successes and Challenges of Early dents with Multiple Disabilities Inclusion Self Determination Activities in New Topic Area: Inclusion Works Topic Area: Early Intervention Jersey Speaker: Jan Writer Speakers: Diane Klein, Brigitte Ammons. Topic Area: Self-Determination Anne Marie Richardson-Gibbs Speaker: Sue Henshaw 133 Continued on page 32 PAGE 31 TASH CONNECTIONS, JULY /AUGUST 2001 FRIDAY SESSIONS Rally for A Real Life '51***Ite P 0Clt#0;11 POO oft/00aIn the Community! you are invited to celebrate with us as we reaffirm our commitment to a real life for every citizen with disabilities and to equitable wages and benefits for every person who provides assistance, coaching, support and services in the community!! Celebrants will be joined by Cal TASH, Tom Gilhool, Max Lapertosa, Barbara Ransom and Judy Gran of PILCOP as we rally on behalf of the groundbreaking Sanchez case filed in California. This case seeks to ensure that people who work in community settings are paid as much as people working in institutions and nursing homes. Meet and greet the families and self-advocates who have brought about the Sanchez action and add your voice to theirs in solidarity for the cause of community! Co-sponsored by Cal-TASH, DREDF, and PILCOP. FRIDAY, NOVEMBER 16, 2001 Activities will begin at 12:00 noon in the Ballroom of the Marriott! FRIDAY SESSIONS Topic Area: Inclusive Education/Early A Consumer Perspective on Self- Continued from page 31 Childhood Determination Speakers: Antonette Hood, Mary E. Topic Area: Self-Determination McNeil Speakers: Chester Finn, Bonnie H. How Far Have We Come? What More Shoultz Can We Do? A 15-year Analysis of The Demography of Inclusive Employment Outcomes for Individuals Education One Accountability System for All with Multiple Disabilities Topic Area: Inclusive Education Students: Maine's Alternate Topic Area: Employment Speakers: Noel Kulik, Barbara W LeroyAssessment Speakers: Rachel Koosed, Linda Topic Area: Statewide Alternate Seppala Communication, and Literacy: The Assessment Future of Related Services and Speakers: Maria Timberlake, Betsy Family Interventions for Children Inclusive Schools Enright with Autism Topic Area: Related Services Curricular Adaptation: Providing Topic Area: Family Speakers: Donald Cardinal, Cheryl M. Speakers: Jennifer Symon, Yvonne Jorgensen Quality School-Wide Training Bruinsma, Rosy Fredeen, Lauren Topic Area: Teacher Development Brookman, Robert Koegel, Lynn Kern The Complexities of Inclusive Speakers: Nanho S. Vander Hart, Koegel Schooling: Student Voices Dolores Gribouski Topic Area: Research Living Their Own Lives: Self Speakers: Laurie R. Lehman, Valerie A. Transition Assessment: Strategies Determination vs. Guardianship Lava that Teachers and Students Use to Determine Student Preferences and Topic Area: Guardianship Alternatives Interests Speaker: Dohn Hoyle Future Directions for School-wide Positive Behavior Support Topic Area: Transition Topic Area: School-wide Positive Speakers: Colleen Thoma, Mary E Partner Learning: The Power Source Held, Ron Tamura, Kimberly Isbell, Joel for Students, Schools and Behavior Support Speaker: Tim Knoster Mills Communities IA' 1:34 ST COPY AVAILABLE PAGE 32 TASH CONNECTIONS, JULY/AUGUST 2001 Imaging the Future A A II 0. ot Criteria (work needs to meet oneor more): Emphasizes inclusion or civil rights aspects of issues or stories Supports self-determination and or independent living philosophy Promotes empowerment 0 Values the civic participation of individuals with disabilities Contributes to the shaping of positive images and helps to eliminate stereotypes by accurately portraying people with disabilities People with disabilities are the primary source(s) of information Accessible (must be available in alternate format such as captioned, large print, etc.) Portrays Diversity TASH Announces a Dynathic- _ Nomination Categories Call for Image Award Exemplary Achievement Awards (Given to persons or companies that havemade Nominees! ongoing and significant contributionstopublic awareness and understanding ofpeoplewith This year at the Annual Conference to be held in disabilities through the media) Anaheim, November 14-17, 2001, TASH will confer a series of awards around the theme"Imaging the Future." Nominations in the following categories must These awards will honor the groundbreaking and exem- have appeared between Jan. 2000 and Sept. 2001. plary work of individuals and companies to create and Print (magazine, newspapers, newsletters) promote positive images of people with disabilities. Image Disability Rights Media Award recipients will be honored at a Showcase of Images News (local, national, morning, magazine format) Reception on Thursday evening, November 15th. Public service announcements Entertainment To nominate an advertisement, commercial, television Primetime drama show, movie, publication, artist, or any medium you think Primetime comedy has met the criteria listed here and has made significant Children's programming -impact on the positive images of people with disabilities, Daytime drama send full details regarding the nomination, including TV movieslmini-series name(s) of the company or individual; complete contact Specials information; and specific details about the medium for Feature films which the individual or company is being nominated. Documentaries/Educational films Print Advertising Electronic Advertising Live theater Internet Radio I Public Service Announcements P l News ::: . 1:: I. . I Public Affairs Programming 1.1.. I I I POSITIVE IMAGES AWARDS 2001 TASH Image Award Application - Applications due September 15, 2001 - How to Apply: Nominator (1) Complete this application form as fully as possible. Name: Nominations may be submitted by anyone, and a product maybe nominated in more than one catetory. Street Address: City: (2) Attach a brief narrative discussing why the nomination is being made. State/Province: Country: (3) To be considered, the original completed application Zip/Postal Code: and supporting materials must be received in the TASH Daytime Telephone: ( ) central office no later than September 15, 2001. Evening Telephone: ( ) Films, commercials, or television shows should be submitted on a standard VHS tape. Nomination Category: All other materials require a printed copy of ad 0 Exemplary Achievement Awards or article from the publication. 0 Print (magazine, newspapers, newsletters) Disability Rights Media News (local, national, morning, magazine * All submitted materials become the property of TASH format) for the sole use of the Positive Images Awards Committee. 0 Public service announcements Entertainment Primetime drama Send to: Primetime comedy Children's programming Awards Committee Daytime drama TV movies/mini-series TASH Specials 29 West Susquehanna Avenue, Suite 210 Feature f Baltimore, MD 21204 Documentaries/Educational films Print Advertising Phone: 410-828-8274 0 Electronic Fax: 410-828-6706 Live theater 0 Internet Radio Public Service Announcements News Public Affairs Programming Name of Media Product Nominated Produced By Where it appeared: When it appeared: Contact Name: Phone: Address: Email: Reason Nominated: 133 PAGE 34 TASH CONNECTIONS, JULY/AUGUST 2001 SATURDAY SESSIONS Involving Supported Employees in the Quality of life for Students with Severe 2001 TASH Development of a Job Satisfaction Disabilities Who Attend Their Neigh- Survey borhood Schools CONFERENCE Topic Area: Employment Topic Area: Inclusive Education/Best Speakers: Lori Garcia, Lewis Persons Practices Speaker: Jill Greene SESSIONS A Systems Approach to Placement Topic Area: Employment Person Centered Transition Planning Speakers: Madan Kundu, Alo Dutta and the Self-Directed IEP Saturday, November 17 Topic Area: Transition 7:30 am 10:00 am An Assessment Tool for Measuring theSpeakers: Paul Bates, Craig Minor Characteristics and Culture of Job POSTER SESSIONS Sites Facilitating Social Interactions: A Topic Area: Employment / Research New Design for Early Childhood Expressing Themselves: High Schools Speaker: Hyun-Sook Park Topic Area: Inclusive Education / Early Students' Use of Voice Recognition Childhood Programs The Standard Rules of the United Speakers: Catherine Lyons, Keith Hyatt Topic Area: Assistive Technology Nations of the Equalization of Oppor- Speakers: Delann Soenksen, Sandra tunities for Persons with Disabilities Positive Peer Pressure: Using Peers to Alper, Charlotte Mull Topic Area: Ethics/Rights/ Assist Students with Disabilities Multicultural Topic Area: Inclusive Education Inclusive Acts: An Integrated Speakers: Maria Del Carmen Malbran, Speaker: Carolyn Auld Playgroup Examined Claudia Villar Topic Area: Autism Current Practices in Inclusive Speaker: Marilyn Lauer The Optimal Praise: Praise That DoesEducation Not Demean nor Extol Topic Area: Inclusive Education/All Addressing Behavior Challenges Topic Area: Family Grade Levels Through Self Management Strategies Speaker: Alicja Jarzab Speakers: Amy Hanreddy, Shawna Topic Area: Best Practice/Students who Olson, Sheri Widman, Anna Co lilies Severely Challenge Schools But Who The Children's Link Society Fuentes, Ann Dillenback, Igor Do Not Have Labels of "Severe" Topic Area: Family/Collaboration Veremeykin Disabilities Speakers: Brenda McInnis, Kim Kruger Speakers: Jessica Beasley, Melanie We Feel Included Here: A Unique Hammond Christian Family Support of the Health Care Collaboration to Serve Preschool Needs of People with Disabilities: Children in their Neighborhood Toward Including in Competitive Two Practical Tools Preschool Team Sports Topic Area: Health Care/Family Topic Area: Early Childhood Topic Area: Competitive Team Sports/ Support Speaker: Amanda Ferlon Leisure/Recreation Speakers: Dina Mc Falls, Carol Persons Speaker: Yoshihisa Ohtake Electronic Resource Guide Supporting High School Students to Topic Area: International Inclusion/ A Follow-up Evaluation of Staff Engage in Recreational Activities withOnline Resource Guide Development in an Inclusive Childcare Peers Speakers: Ronda Sortino, Karen Minor, Topic Area: Early Childhood Topic Area: High School Inclusion Beth Mann, Sandy Moore Speaker: Kwang-Sun C. Blair Speakers: Susan Copeland, Stephanie Fowler, Carolyn Hughes, Penny Church-Hey, Why Weren't You at the Gym!! Effects of Activity-based Integrated Pupke Topic Area: Leisure and Recreation Preschool Curriculum (AIPC) for Speakers: Michael Shanzer, Beth Korean Young Children with The Inclusive Education Instructional Shanzer Disabilities Project Topic Area: Early Childhood/ Topic Area: Inclusive Education Multicultural Speakers: Vicki A. McGinley, George Speakers: Eunhye Park, Sohyun Lee Drake 1o Continued on page 36 PAGE15`) TASH CONNECTIONS, JULY/AUGUST 2001 SATURDAY SESSIONS SATURDAY SESSIONS The Definition, Meaning, and Process Issues Surrounding Teacher In-service Continued from page 35 of Community from the Perspective ofTraining - "It's Like Herding Cats" Six Individuals with Significant Topic Area: Personnel Preparation Disabilities Speakers: Christy Gunn, Martel Zeller, Strategies for Incorporating New State Topic Area: Research Michael Burdge and Federal Mandates into Training Speaker: Joanna Royce-Davis Program for Teachers for Students IDEA 97-VR Act & the LEP Transition with Severe Disabilities Putting the Social Model into Practice Team Topic Area: Personnel Preparation Topic Area: Research Topic Area: Transition Speakers: Michael Hannum Speaker: Susan Neely-Barnes Speakers: Luz Elena Aponte, Milton Aponte, Berthy De La Rosa-Aponte, Al Organized Chaos: A Collaborative From School to the Real World: A Farias, Sandra Obando Model of Distance Delivery Training Portrait of Family Transition Topic Area: Personnel Preparation Topic Area: Research/Transition Navigating the Maze of Transition Speakers: Mary Cavalier, Roxann Speakers: Debra Baker, Sylvia Martin Topic Area: Transition Lamar Speakers: Melissa A. Brown, Pam Overview of the Special Education Vesley, Jayne M. Stooksbury Infusion: Modeling Special Education Elementary Longitudinal Study within a New Teacher (SEELS): A National Study of Special Saturday, November 17 Topic Area: Personnel Preparation Education Speaker: Christine A. Macfarlane Topic Area: Research 10:00 am 12:15 pm Project GOAL: Guaranteeing Oppor- Speakers: Susan U. Marks, Jose tunities for ALL Learners (including Blackorby, Jennifer Shaw-Hegwer Win Social Security's Money -those with Low-Incidence Disabilities) Topic Area: Employment/Advocacy Topic Area: Personnel Preparation Lifestyles Management: An EducationSpeaker: Tyler Paris Speakers: Sandra Hopfengarder War- & Support Group for Individuals ren, Melissa Engleman Seeking Healthy Change Getting to the Dream Topic Area: Self-Determination/ HealthTopic Area: Employment Imaging Our Values: Pre-Service Speakers: Susan Wilson, Kaydee Speaker: Denise Sosbe Teachers' Creative Images Sullivan Topic Area: Personnel Preparation/ Involved Effective Parents in the IEP Research Realizing Dreams - The Journey So Process Speakers: Randy Seevers, Sylvia Martin, Far Topic Area: Family Debra Baker Topic Area: Self-Determination/ Speaker: Ginette Goldfeld Speakers: Sandra Mak, Linda Pollitt, Issues in Developmental Disabilities: Craig DeCoux, Shawna Churchill, Dancing as a Team An Interdisciplinary Survey Course on Clarence Hastings Topic Area: Manageinenf Issues/ Developmental Disabilities Employment Topic Area: Personnel Preparation Imaging the Future: Student Stories Speakers: Debra Whitehead, Tyler Paris Speaker: Charles Degeneffe in Words and Pictures Topic Area: Transition The Hundredth Monkey: A Prophet Speakers: Karen Zimbrich, Debra Hart of Inclusion Topic Area: Positive Approaches Saturday, November 17 Speaker: Janet Fehr 10:00 am 11:00 am The Prespectives of Individuals with Muticultural Families and the Transi- Disabilities and Challenges Behavior tion to Adulthood: Issues and Strate- on Challenging Behavior gies for Success Topic Area: Research Topic Area: Family Speaker: Mike Ruef Speaker: Mary Morningstar 133 PAGE 36 TASH CONNECTIONS, JULY/AUGUST 2001 JULY/AUGUST 2001 Evansville ARC its NOT seeks an Executive Director/CEO YOUR MOTWER'S Job Description: Evansville ARC has a top leadership opportunity as an Executive Director/CEO. Demonstrated STAFF DEVELOPAAENT1 leadership skills are a must. This leader will be responsible for executive management as well as directing, administering, and coordinating agency activities in support of policies, goals, ©Life Lines Paraeducator and objectives established by the Board of Directors. Trainer-of-Trainers A master's degree in human services, public or business administration or a related field with a minimum of 7 years of management preferably in an ARC or rehabilitation organiza- Why? Activity-based, NOT "sit-get- tion is required. Experience working with board of directors, financial and personnel issues, outcome systems, and program split & forget" staff development, services development is a must. This leader should display a small groups (less than 30!), superb and highly polished communication style in all settings with excellent interpersonal skills and have the highest individualized with networking standards of integrity and commitment. opportunities *Illinois CEUs available! Organizational Background: Evansville ARC, Inc., is a private, not-for-profit CARF accredited agency with an $8 million dollar budget and 160+ employees serving over 600 What? 6 training modules, 3-day persons with developmental disabilities. For almost 50 years, Evansville ARC has been providing Early Childhood Services, trainer-of-trainers delivered by Adult Habilitation and Supported Employment, a Production Facility which has achieved ISO 9002 certification, Transpor- authors of ©Life Lines, the most tation and Advocacy services. Our Vision is to be a recog- nized leader assisting all persons with disabilities, including comprehensive paraeducator those with the most significant support needs, to become more independent and included as valued members of the curriculum available community. Respect for the dignity and worth of each person is the driving force of this commitment. Evansville ARC is governed by a Board of Directors composed primarily of How? Visit our website or call to business leaders and family members of people with develop- mental disabilities. find out about upcoming training Evansville ARC is located in Evansville, in southwestern or how to host training in your Indiana, on the banks of the beautiful Ohio River with a district population of over 125,000 and within three hours of driving distance of major metropolitan areas. We have an excellent quality of life including a low cost of living, little or no crime, Warning: This training will excellent public and private schools, and a transportation system that can get you across town in less than a half hour. actually make a difference! Enjoy a small town environment but with the cultural advantages of an urban setting!! Visit our web site or call to learn more We offer a competitive salary commensurate with the about @Life Lines and our other trainer- required level experience and level of executive responsibili- of-trainers workshops, ordering ties the individual will assume. In addition we have a generous benefits package. Applicants may apply on line to materials, and hosting www.evansvillearc.org or submit a resume to Vickie Warren, a TOT in your district. Human Resources Director, Evansville ARC, P.O. Box 4089, 615 W. Virginia Street, Evansville IN, 47724, FAX 812 -421- 8537, telephone 812-428-4500 or [email protected]. www.lrconsulting.com PMB 747 POB 6049 Katy, TX 77491-6049 PH: 281-395-4978 EQUAL OPPORTUNITY EMPLOYER M/F/V/D Fax: 281-392-8379 PAGE 37 TASHCONNECTIONS,JULY/AUGUST 2001 1 2 9 GOVERNMENTAL AFFAIRS from TASH, ADAPT, Syracuse Univer- reauthorization of the Elementary and sity and Project Leadership. The entire Secondary Education Act. The issue of focus is to help participants become discipline for students with disabilities more effective and confident advocates. should be considered when IDEA is Check it out! You could become that reauthorized in 2002. Thank you. "someone" who does "something" to Include your name, address, and make your community a better place for relationship (self-advocate, family or everyone. friend of a person with a disability, educator or professional concerned with the education of people with disabili- ties). The Elementary and Secondary SEND TO: Education Act recently passed by the The Honorable (full name of Senator) House and Senate (H.R.1 and S.1) or The Honorable (full name of Repre- contain amendments that will put sentative), Rm.#, (name of) Senate children and youth with disabilities in Office Building or (name of) House jeopardy. Specifically, both versions of Office Building, United States Senate Have you ever thought, "I don't the bill contain what is called "disci- Washington, DC 20510 or like the ways things are going. pline" language, but in reality are U.S. House of Representatives I want things to change! Why provisions that allow school districts to Washington D.C. 20515 doesn't somebody do something?" suspend or expel students with disabili- ties from public school without provid- - Please send copies of ALL letters-to the Sadly, we soon find out that "some- ing any services at all. If these amend- TASH Governmental Affairs Director, body"- is probably NOT going to do ments are agreed to, they will overturn Jamie Ruppmann. Letters may be "something," and that we better step in the Zero Reject (all means all) provision forwarded by e-mail and try to "do something" ourselves? that has been the cornerstone of the The Foundations of Inclusive Education: A Compendium of Articles from JASH Edited by Douglas Fisher and Diane Ryndak Foreword by Steve Taylor Consistent with the spirit of TASH, this book of readings from JASH includessome of the most important articles about inclusive education that have been published in recent years. The compendium includes the following subject areas: :.From Least Restrictive Environment to Inclusion: Conceptual Underpinnings and Overridding Issues Perceptions of Inclusion and Attitudes Towards Students with Disabilities :From Facilitation of Social Interactions to Belongingness: A Change of Focus .:Strategies That Facilitate Inclusion "These JASH articles have helped shape my world view about the nature and nuance of inclusion; they illustrate important dimensions in the dynamic evolution of LRE policy." Anne Smith, U.S. Department-of Education "The authors represented in this new resource are the most qualified specialists researching and applying strategies for inclusive education today." Norris Haring, University of Washington "A book rich with the basic concepts, supportive research, and change strategies critical to establishing inclusive schools." Martha Snell, University of Virginia "The Foundations of Inclusive Education explains not only the rationale, but also the practicalities of creating and maintaining inclusion." Douglas Biklen, Syracuse University "Finally, a collection of seminal readings university instructors can use to provide both contemporary and historical readings for any number of classes in special education!" Jacqueline Thousand, Califtirnia State University, San Marcos This textbook is a must for all who are struggling with the complexities of inclusive education. Placeyour order now for the Fall semester! Yes, I would like to order 1-25 copies at $19.00 each (member rate); $23.00 (non-member rate) Number Ordered: 26-50 copies at $16.00 each (member rate); $21.00 (non-member rate) *Add $3.00 S&H for every 50+. copies at $13.00 each (member rate);-$16.00 (non-member rate) $30.00 within U.S. Name: *Add $6.00 S&H for every Organization or University: $30.00 outside U.S. Address: City/State/Zip or Postal Code Total for Foundations: Country: Phone: E-mail: Total for S&H: $ Payment must be in U.S. Funds Check enclosed MasterCard Visa Discover TOTAL ENCLOSED: Card # $ Expiration Date: Signature: For more information on volume discounts, call 1-800-482-8274, ext. 0, or 410-828-8274, ext. 0. Fax ordersto 410-828-6706, or mail to TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, Maryland 21204, USA PAGE 39 1 `1 I TASH CONNECTIONS, JULY/AUGUST 2001 -TASH 'NEWSLETTER Policy Statement Priscilla Newton. Editor It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Chair, Executive CommitteeBob Kafka torial judgement in selection of materials. Ming-Gon John Lian, Ex-Officio All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Tia Nelis abilities. Terms such as the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Liz Obermayer individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Marcie Roth Terms such as "people with mental retardation," "children with autism," and "in- Linda Bambara,' Ex-Officio Patrick Schwarz dividuals who have disabilities" should be used. The appearance of an advertise- Wanda Blanchett Richard Sobsey ment for a product or service does not imply TASH endorsement.For a Jacqueline Thousand copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio 8274, ext. 102. June Downing Lucille Zeph MEMBERSHIP INFORMATION r Name: Address: City /State/Zip- Telephone: ( ) Fax: ( ) E-mail: Is the above your work address home address other Please Check Appropriate Categories () Educator/Teacher (K-12) () Related Services Provider (not more than three): () Government Personnel ( ) Self-Advocate/Person w/ Disability () Administrator/Adult Services () Legal Services Provider () Social Worker () Administrator/Education () Occupational/Physical Therapist ( ) Speech/Language Pathologist () Administrator/Other () Parent/Family Member () Special Education Teacher () Adult Service Provider/Staff () Personal Assistant () Special Education/Support Specialist ( ) Advocate/Friend ( )ProfessionaVPublic Policy Advocate ( ) Staff Development/Trainer ( ) Behavioral Specialist () Professor/Instructor-College/University () Student ( ) Case Manager () Psychologist () Supported Employment ( ) Early Childhood Services () Regular Education Teacher/Administrator () Other Moving? Please notify TASH of your new address. General Membership (individual) $103*. () Mastercard() Visa() Discover Organization/Subscription (all organizations, schools, libraries, Card Number Expiration Date universities, etc. Must use this category) 5230 *. Associate Membership (for people having an annual household Signature income of 525,000 or less, and for whom payment of the full ()I would like to spread my payments out.Enclose 1/3 and you will fee would present a financial hardship) 560 *. receive 2 additional invoices at monthly intervals. LifetimeMember $1300. Add $10 for postage costs for members in Canada and 525 for members outside the U.S. and Canada. Please make check payable to: TASH Group Discount Rate (When three or more individuals from the same Address: 29 W. Susquehanna Avenue, Suite 210 organization join as International/Chapter or International Only Baltimore, MD 21204 members at the same time -- Save S20 per membership!) Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank. *These prices are for both International and Chapter memberships. For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column. For a list of membership benefits, please 8274. call 410-828-8274, ext. 107. L NONPROFIT ORG. 29 West Susquehanna Avenue U.S. POSTAGE Suite 210 paid Baltimore, MD 21204 HAGERSTOWN, MD Phone: 410/828-8274, PERMIT NO.187 FAX: 410/828-6706, TDD: 410/828-1306 Web site: www.tash.org Address Service Requested JULY/AUGUST 2001 PRINTED IN THE U.S.A. VOLUME 27 ISSUE NUMBER 9 SEPTEMBER 2001 Equity, Quality and Social Justice for People with Disabilities Inside This Issue 2001 TASH Executive Board Election Inclusion in Higher Education Are Students Being Prepared for Adult Lives? "Transitioning" to Independent Living Skills I BEST COPY AVAILABLE SEPTEMBER 2001 TABLE. OF CONTENTS From the Executive DirectorPage 3 2001 TASH Board Election Page 4 2001 TASH Conference Page 11 The Professionals' Choice Inclusion Goes to College Page 14 High School Inclusion + Seamless Transition Pagel? Stages learning Materials Transition is a Component of the is the education industry's Page 22 leading producer of Education Process attractive, high-quality Center on Human Policy Resource pliatogropltk flash catch Review Page 25 designed to teach basic. 4, language skills to both ZAP children and adults with t:31-17114111.--7 ,,4? autism, speech and # 4., language delays. TASH (formerly The Association '4 developmental disorders, for Persons with Severe Handi- or brain injuries. caps) is an international advocacy Available Card Sets: Language Builder. Picture Noun Cords association of people with dis- 350 cards from 9 different categories. including animals. vehicles. foods, clothing. furniture, toys, everyday objects, shapes ants colors. Features cards to teach abilities, their family members, identical and similar matcn msg. as well as receptive and expressive labeling. other advocates and people who Language Builder Ocanootion Cards I116 cards featuring male and female depictions of common occupations. work in the disability field. Ideal for labeling, as well as descriptive and imaginative exercises. TASH actively promotes the full the most Current and realistic cannon the market. inclusion and participation of per- visit www.stageslearning.com sons with disabilities in all as- or call 888-501-8880 to place an order or mune. Mrs color brochure.. pects of life. To receive an infor-_ mation packet, contact: TASH, 29 W. Susqueharina Avenue, Suite 210, Baltimore, 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) VMSFI 828- TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possible; For questions about the 2001 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, [email protected] Building communities in which no one is segregated For questions about membership, conference registration or exhibiting, call: ardemyonebelortp; Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances th at embrace diversity; For information on governmental affairs, call: Jamie Ruppmann, Director of Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: Advocating for opportunities and rights; [email protected] Eradicating injustices and inequities; For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supportingresearchanddissetninating Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] lcnowiedgeandinformation; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promotingindusiveeducadon; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation; and, TASH Connections is available on audiocassette. in large print, and in Braille for people whose disabilities make these alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material Promoting excellence in services. appearing in TASH Connections should be sent to: TASH Connections, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Connections Editor Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to: [email protected]. PAGE 2 14 4 USNCONNECTIONS, SEPTEMBER 2001 FROM THE EXECUTIVE DIRECTOR Four of the 13 returning members are people with disabilities/self-advocates; Two of the 13 returning members Joint Strategic represent ethnic minorities; Planning Session Three are men; ten are women; Planneb for Anaheim!! Six of the 13 returning members are A strategic planning session will be university professors or otherwise held in conjunction with the confer- university affiliated; ence on Saturday, November 17th from 1:00 - 4:00 pm. The purposes of From the Executive Director Six of the 13 returning members have this session will be to: BY NANCY WEISS legislative experience; Identify what the TASH 2001 TASH BOARD Three have business or management experience; committees, chapters, members, staff ELECTIONS and Board have accomplished toward Two have fundraising experience; meeting the goals of the current strategic plan. It's election time and TASH needs your vote.! The ballot is included in All have a strong history of TASH involvement; Review and discuss the proposed this issue of TASH Connections on mission statement and new names for page 9. Returning Board members represent TASH. A final recommendation on a_ the following states: California (2), new name will be made by the people The Executive Board is a group of TASH attending the strategic planning session members, elected by the membership, to Colorado, Florida, Illinois, Maine, Maryland (2), Massachusetts, Pennsylva- in Anaheim. It is planned that a set policy, oversee the organization's decision on a new name will be finances and guide TASH's overall nia, and Texas. Additionally, one Board member is from Alberta, Canada. finalized by the Board at their meeting direction and goals. Four Board members following the strategic planning will be selected through this year's session. election process. There is likely no more Since these are the criteria the Nomina- important decision an organization tions Committee uses in selecting candidates for-the Board, we thought it makes than the people it selects to guide All chapter officers, committee chairs, its future. would be helpful to you to have this information in making your voting Board members and staff are invited to decisions. participate! All chapters and commit- Some TASH members have asked how tees are encouraged to have at least one the nominees for the Board are selected. We hope that all TASH members will representative attend this important Each year, a Nominations Committee is meeting. If you would like to attend convened. This committee has broad participate in this year's elections. We're aiming for as inclusive a process as (but are not a committee or chapter representation across all of the kinds of representative), please contact Nancy people that make up TASH's member- possible! The four candidates who are selected will be announced in the Weiss at ruzi45 T1811 CONNECTIOUSEPTEMBER 2111 2001 801110 ELECTION Jacki's areas of specialization include personnel training, inclusion of individu- ff.The als with significant disabilities, and 2001 positive behavior support. She has been awarded funds to pursue all of these interests via research, training, and model demonstration projects and has Executive Board published the results in textbooks, chapters, and journal articles. She served as Coordinator of the California Research Institute on the Integration of Students with Severe Disabilities (CRI), Director ELECTION of a series of personnel training projects addressing integration, community intensive instruction and inclusion, and YOUR ROLE IN SELECTING Jacki as Training Coordinator for the Rehabili- TASH's LEADERS tation, Research and Training Center on Anderson positive Behavioral Support, A six ne of the most important things University consortium m dedicated to members of any organization Jacki Anderson's developing and disseminating practical are asked to do is to participate ongoing commit- technologies for supporting individuals in0 selecting members of the Executive ment to include with behavioral challenges in inclusive Board. Now is the time for you to decide individuals with school, work and community environ- who will help provide critical leadership significant ments. Over the course of this project, in TASH's social justice movement for disabilities in all she coordinated the development of a people with disabilities. Many impor- aspects of life has comprehensive inservice training model been readily evident throughout the three tant issues and challenges face us your to establish interagency state level participation as a voting member of decades she has been in this field. As a training teams. As a result, a network of TASH counts more than ever. classroom teacher, she spent 10 years 25 State teams is working collaboratively working in the first integrated California to provide training and technical assis- Four of the 15 seats on the TASH public schools program for students with tance to assist local communities in Executive Board will be re-seated at the multiple disabilities, autism and other building the capacity to provide effective November 2001 TASH Conference in health impairments. These students, and respectful positive behavioral Anaheim. The individuals who appear who had historically been served in supports in inclusive settings. She also on this year's slate have made significant institutions or segregated schools, taught serves on a variety of national, state, and contributions in the lives of people with her the power of teaching in natural local committees and advisory boards. disabilities and have demonstrated environments, the importance of family leadership in the disabilities movement. partnerships in the educational process, Jacki has been an active member of and the tremendous need for both TASH since 1979 and of CAL-TASH Your vote is critical. Please use the advocacy for effective services and since it was founded in 1982. She is past educated support personnel. postage-paid, self-mailing ballot pro- president of the CAL-TASH board, vided on page 9, or clearly write "ballot" (board member since 1989), board on the envelope you use. Ballots must be These important lessons have been the member of TASH since 1998 and is received at the TASH office by October foundation of her efforts as a trainer, currently serving as Vice President. 12, 2001. Please use ink and vote for researcher, and facilitator of systems Jacki would bring to the board an four candidates. Voting for more than 4 change. She has over twenty-five years' understanding of and commitment to the nominees will invalidate your vote. experience conducting inservice training relationship between TASH and the activities around the country and has chapters. She has a genuine interest in taught for twenty-one years in Special the organization's continued efforts in the THE FOLLOWING ARE THE NOMI- Education teacher training programs at areas of advocacy and the dissemination NEES FOR THE TASH EXECUTIVE the University of Wisconsin, San of information via the journal, newslet- BOARD OF DIRECTORS: Francisco State University, and Califor- ters and efforts to influence legislation nia State University Hayward, where she and policy development that support the has served as coordinator of the masters rights of individuals with significant degree and credential programs in the disabilities to be active and respected area of moderate-to-severe disabilities members of our society. since 1986. Continued on page 5 PUE 4 14 6 TUNCONNECTIONS, SEPTUM 2881 2001 BOARD ELECTION 2001 TASH Board Election I have been a long time TASH ment, and influence legal and Continued from page 4 member because I believe in its policy decisions. values; values that have been shaped by the collective voice of I will look forward to the oppor- Linda diverse groups including people tunity to serve and promote Bambara with disabilities, advocates, re- TASH values to other groups searchers, service providers, and outside of the organization "It is truly an families. through advocacy and research." honor to be As a board member, my goal would considered a Tracy nominee for be to insure that people with the the TASH most significant support needs Knight board. I've remain in the forefront of our been an discussion. Those who carry the Tracy's active member of TASH for over label of severe disability continue allegiance to 20 years, serving the TASH com- to be marginalized in all aspects of working for and munity in a variety of roles. Most our service, misunderstood, and with individuals recently I have co-chaired the underrepresented by other organiza- with disabilities Positive Approaches Committee, tions. Nationwide, other organiza- is rooted in her coordinated the research strand for tions have looked to TASH to set early family life. As the oldest several conferences, served as ex- the values and direction for the child of three, the youngest of officio board member and editor-in- support of people_ who continue to which had a significant speech chief of JASH- have little voice in this country. We impairment, Tracy was reared by a must not lose sight of this most single mother in a low income area In my spare time, I am an associate important agenda as TASH broad- of Jackson, Mississippi. "The professor of special education at ens its goals to address issues that multiplicity of race, economic Lehigh University. My interests foraffect all people with disabilities. status, education and disability both research and practice include In my view, we must continue to related experiences presented my developing and fostering the accep- translate supports for people with family with unique challenges and tance of positive behavior supports the most intense needs, or other- necessitated my becoming an in the schools and the community, wise, our system will fail to see and advocate early on." and enhancing self-determination appreciate their full capacity. for people with significant disabili- Tracy has provided services to ties through both skill development In addition, I am committed to individuals with disabilities at the and supportive environments. keeping the research agenda alive in elementary, middle, high school Additionally, I serve as executive the TASH organization. Because and college level for nearly ten director of Lehigh Support for of its constituency, TASH is in a years. While pursuing her doctoral Community Living, a university- unique position for researchers to degree at the University of Wis- based program that provides direct form partnerships with various consin-Madison, Tracy participated supports for adults with disabilities stakeholder groups (e.g., people in many activities designed to to live in inclusive community with disabilities, families, policy promote enhanced inclusive settings. Being involved in the makers, service providers) to practices and career placement service world and academe keeps promote the most progressive, opportunities for students with me mindful that research must authentic, and socially minded disabilities in urban settings. She is serve a social agenda, and that research agenda. In addition to its currently an assistant professor of advocacy and research must work advocacy, TASH must continue to special education in the Depart- hand in hand. support its research mission to, ment of Teaching and Leadership strengthen its credibility with other at Syracuse University. As a organizations, shape the teaching agenda for professional develop- Continued on page 6 ME 5 1/17 USNCOMMenni,SEPTE11111 2111 2111 BOARD ELECTION 2001 TASH Board Election pledge to work so that the veiled Since moving to the Washington, Continued from page 5 genius in all can be revealed." D.C. area, I have become involved with and am serving on numerous boards of directors and groups teacher-educator, she provides Jorge Pineda including the Latin American instruction on methods and curricu- Youth Center, D.C. Statewide "My name is lum for working with students with Independent Living Council, Next Jorge H. significant disabilities in diverse Step-Charter School, Smithsonian Pineda. I am inclusive settings. Institution Advisory Council on from Mexico Accessibility, TASH, Fiesta City and have Based upon her collective experi- Educativa, D.C. Center for hide- been living in ence, Knight has honed her advo- pendent Living and ADAPT" cacy and research focus to "give the United States since voice" to the experience of families Jorge is the current Treasurer of 1992. I am an accountant by in urban areas rearing children with TASH's Executive Board and is profession and currently work at significant disabilities. She strongly seeking a second term on the the National Council on Indepen- believes that equitable and effective Board. teaching is predicated upon the dent Living in Arlington, Virginia. degree to which educators under- I have been disabled since birth, stand, accept, and appreciate the and have been involved in the Mike cultures of the communities in Disability Rights Movement since Rogers which they teach, as evidenced by the late 1980's. her- work with several parent sup- port groups, faith communities, and In Mexico I worked with other self- "I would like service provision agencies in up- advocates to set up an organization to ask you for state New York. "Families, whetherto fight for the rights of people your vote. My nuclear, foster, or nontraditional are with disabilities. In 1991 I was experience with disabilities is a the most reliable constants within invited to come to the United personal issue because I was born the lives of children with disabili- States to participate in a leadership with cerebral palsy.I currently ties; therefore, we must honor and development program. It was at work for the Department of Hu- empower without prejudice and that time that I really began to man and Health Services in the without question." learn about all the wonderful work State of Washington, in the Depart- that was being done in this country. ment of Developmental Disabili- As a recent member of TASH, One of the results of my trip to theties. For me, advocacy is not a job Knight is confident that her experi- United States is that I met my wifebut a way of life. I have been ence and continued professional and moved from Mexico to involved in political issues for a and academic growth has equipped Berkeley, California.I became long time.I became part of TASH her with the skills, knowledge, and involved in numerous activities when the conference was in Seattle. passion needed to successfully including work with Fiesta and have been at every conference fulfill duties in alignment with the Educativa, an organization to help since, including the self-determina- purpose and vision of TASH. Latin parents who have children tion conference. I currently work on with disabilities.I began to learn self-determination systems change about the many problems people "Within the period of time I have issues. been a member of TASH, I have with disabilities face in this country, continually been endowed with a and have been working with them to help ensure that parents are Some of the issues I spend time on passion and prowess for equity that are transportation and access to aware of their rights so that their cannot be abated. It is indeed an buildings and the community. I am honor and privilege to be nomi- children can obtain a quality nated for the board. I offer not education. only a unique perspective, but a Continued on page 7 PAGE 6 I 13 TASK CWINECTIONL SEPTUM§ 2011 2001 BOARD ELECTION 2001 TASH Board Election "Through this experience, I have encounter someone who may Continued from page 6 met some of the most determined communicate or get around differ- and fun people in the world I ently than they do, they don't see would expect no less from TASH! the incredible human who is right One cannot find the spirit, passion, there in front of them. a member of People First of acceptance and sense of family Washington, and I am on the TASH has anywhere else. A major The reason our country has high National Board of Self-Advocates part of this is our community: self- unemployment, loss of rights and Becoming Empowered (SABE). advocates and family members givepoor attitudes toward people with this organization clear, tireless, significant disabilities is because of I have experience with national dignified direction and keep the the uneducated general public and issues; my experience is growing pulse strong." lack of experiences not the everyday.I still have things to person with the disability. The learn. There are several major Patrick is an adult with significant inclusion movement is the way we reasons I'd like to be on the TASH ADHD who is an Assistant Profes- can do something about this. We Board. sor and Chair of Special Education can create an informed society. for National-Louis University in There is no doubt in my mind that I'd like to give TASH members my Chicago. He spends much of his inclusion is equally important for personal insight about national time preparing special educators our general youth. Through inclu- policies that affect the lives of and general educators to effectively sion, all will be informed and it will people with disabilities. My per- serve all students through utilizing not be a big deal for our general spective is that we need to innovative, collaborative and youth community to welcome strengthen the connection between school/community building teach- individuals with disabilities into TASH and SABE and ensure that ing practices. He also serves as a their neighborhoods, places of we have a dialogue with other part-time director for Infinitec/ employment, and friendship circles. disability organizations. This is oneEmpowerability, a Chicago-based The inclusion movement is now issue I intend to work on. not-for-profit agency that assists having great positive impact in individuals to actualize their battling attitudes, community I also have an interest in making dreams. obstacles and unemployment for sure that policies are written so that people with significant disabilities." they make sense to people, and so Patrick previously taught public that everyone understands what the school for eight years in Madison, Patrick is currently Co-Chair of the policy means. I think that I am a Wisconsin. "My teachers were TASH Name Change Committee. visionary.I feel like people with Lou Brown, Ann Donne llan, "It is extremely important that the disabilities and people without Allison Ford, Jan Nisbet, pat beliefs, convictions,, opinions and disabilities are equals, and I want to Mirenda, Jennifer York, Pat Rogan passions of all constitutents of the be a part of the movement to makeand certainly all of my students organization come together to value that happen. This organization is and family memberswhat an each other's voices and stories. We an organization that walks the walk education!" are reimagining what TASH can be and I would honored to be a part of without losing any of the incredible the effort. All of his spare time is spent legacy. Let's forge ahead, I wel- educating generations of people come the opportunity." who have not had the rich and Patrick critical experiences with individuals"I spent some important time Schwarz who have various significant chal- educating my own three-year-old lenges. "We all have challenges; I niece, Haley, about diversity when Patrick is just can attest to this firsthand. The she acted 'clingy' to me after seeing finishing his obstacle is that much of the general first term as a public does not acknowledge their TASH Board own challenges, and when they member. Continued on page 8 PM/ TASH CONNECT= SEPTUM 2001 d Q 2001 BOARD ELECTION 2001 TASH Board Election friendship, family-related issues, I would hope to bring my skills and Continued from page 7 supported living, organizational knowledge in this area to assist the change, and person-centered plan- TASH central office staff as well as ning/support. In addition, I have the Board in these matters. a person who used a wheelchair to authored several articles on inclu- Finally, TASH needs to continue to get around. Through education andsion and friendship with Marsha push the envelope. Whether it is direct experience, she is now one ofForest, John O'Brien, and Bill and generating income .so that people the best advocates around! When Susan Stainback. with disabilities can accumulate teaching her 'person first' language, wealth, attending and graduating she had the toughest time saying However, most people know me as from college, home ownership, sex, the word 'disability.' What comes a parent.I have spoken about our love, and marriage (maybe not in out instead is the word 'possibility.' family's journey for inclusion in our that order), friendship, or another Her term is now 'people with neighborhood school, relationships possibilities.' Uncle Pat is now outside of school, attending college,area, I want to see TASH be in the forefront of these issues so that giving his niece a membership to moving into one's own home, ALL people will lead wonderful, TASH and inviting her on the careers, jobs and owning businesses. valued lives." Name Change Committee." These are some of the issues which we have worked on and struggled with over the years. The most Jeffrey important issue that I have had the Strully honor of being involved with has been the value and importance of DIRECTOR OF "I have been friendships in the lives of all a long-time people.It is this subject that so CONNECTIONS member of many people continue to want to TASH. see happen, but it continues to be Over the lacking in the lives of so many An innovative program of Onondaga people. Community Living providing years. I have personalized supports for adults with served on the conference planning MR/DD through HCBS Waiver. committee, as well as personally I would like to see TASH continue being a presenter at numerous to be a beacon in the professional, Develop, supervise and manage TASH conferences. parent and consumer communities program and work with advisory for those things that are important board towards incorporation. Ensure I am currently the Executive to our members such as inclusion supports are developed and delivered Director of Jay Nolan Community in schools, person-centered plan- in compliance with Federal and State Services, a not-for-profit human ning, quality lives, empowerment laws and policies: $250k budget. service agency located in California and choice.I would hope that Tremendous growth potential! that provides personalized and TASH would focus more of its efforts on the plight of adults with -Experience with MR/DD, individualized supports to people BS/BA in Human Services with developmental disabilities.That is with autism and other developmen- strong philosophy, supervisory, tal disabilities so that they can lead not to say that we shouldn't be management and organizational skills. valued lives in the community.I concerned about what is happening have been involved with people in our schools. We definitely need Please forward resumes to: with developmental disabilities for to advocate for quality and effec- over 32 years in a variety of differ- tive education for all learners. Patricia Fratangelo ent capacities and environments Onondaga Community Living 518 James Street, Suite 110 throughout the United States.I As an agency director, there are many issues that administering a Syracuse, NY 13203 have had the honor of speaking EOE throughout the U.S., Australia and not-for-profit organization needs to England on issues of inclusion, be aware of and concerned about. ' ISO TARN CONNELININA SEPTEMBER 2001 2001 BOARD ELECTION TASH 2001 Election of Four (4) EXECUTIVE BOARD MEMBERS Term of Office: 2001-2004 -OFFICIAL BALLOT- There are four 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 Execu- tive Board members-elect will begin their terms at the Annual Board Meeting held in conjunction with the 2001 TASH Conference to be held in November in Anaheim, California. Ballot Instructions: You should vote for a total of FOUR nominees. Ballots containing more than four votes are invalid.Please mark your ballot in ink. Jacki Anderson Tracy Knight Mike Rogers o Linda Bambara Jorge Pineda Patrick Schwarz o Jeffrey Strully For information about the candidates, please refer to pages 4-8 of this issue of TASH Connections. Mailing Instructions: Ballots can be returned using this postage-free mailer, or originals of the ballot can be sent in an envelope. If you elect to use an envelope, please be sure the word BALLOT is printed on the front. If you use an envelope, please do not place anything other than your ballot inside; your envelope will not be opened until the counting of the ballots. VERY IMPORTANT: ONLY AN ORIGINAL BALLOT WILL BE CONSIDERED VALID. PHOTOCOPIES OR FAXES WILL NOT BE ACCEPTED. A Ballots must be received at the TASH Central Office by vAiatv October 12, 2001 Mail your completed ballot to: TASH, 29 W. Susquehanna Avenue, Suite 210 Baltimore, Maryland 21204 Attn: Ballot PAGE 9 151 TUN CONNECTIONS, SEPTEMBER 2001 % % % i I . I % t t 4 1 t I 0104 1.011V9 3213H lulilm11141.111.1,,11,1m1u11111111.1.111 21204-9434 MD BALTIMORE, 210 STE. AVE., SUSQUEHANNA W. 29 TASH ADDRESSEE BY PAID BE WILL POSTAGE MD BALTIMORE 1896 NO. PERMIT MAIL FIRST-CLASS MAIL REPLY BUSINESS STATES UNITED THE IN MAILED IF NECESSARY POSTAGE NO 2001 TAU CONFERENCE 2001 Annual Cal-TASK by Conference Co-Sponsored "Imaging the FuturePP November 14-17, 2001 Marriott Anaheim 700 West Convention Way Anaheim, CA_92802 Phone: 1-714-750-8000 If you can attend only one disability conference this year, here's why the 2001TASHAnnual Conference should be it! The largest and most progressive disability rights meeting in the country, theTASHconfer- ence features in excess of 350 workshops, interactive sessions, discussion groups, exhibits, displays and more covering the full range of cutting-edge issues related to inclusive education, supported living, self- advocacy, family issues, early childhood, communication, employment, specialized health care, assistive technology, positive behavioral supports, related services, higher education and everything in between. _ We guarantee that you will leave this conference with the latest in resources, information and contacts that will help you facilitate effective advocacy, training, and research. So don't miss your opportunity to network, to learn, and to be a part of one of the most talked about disability conferences in years! Highlights of the 2001TASHAnnual Conference include: TASH Tech Pre-Conference Workshops and Saturday Full Day Institutes covering a diverse range of topics such as "Designing and Implementing Inclusive Curriculum: Teaching, Community, and Standards," "Civil Rights, Self-Determination and Decision Making vs. Guardianship," and 'An Introduction to 'Real Futures: A Transition Training for Parents of Children with Disabilities" A keynote address by Dan Keplinger, about whom the Academy Award-winning film, King Gimp, was made; "Media Reflections of Disability Images," a unique media forum at which representatives of the disability, press, film, television, and advertising communities will discuss how media influences the images society holds of people with disabilities. For additional details about the 2001 TASH Annual Conference, visit our web site at wwwtash.org or call 1 -800- 482- 8274 and request a copy of the conference brochure. 1 rig 11 1 5 3 TUB CONNECTIONS, SEPTEMBER2001 2001 TUN CONFERENCE naive, ignorant, and arrogant about the needs of our children. I'm not implying that one hundred percent of services be reimbursed; I'm asking the system to look at alternative and, in some cases, less costly templates for greater function. I started contributing money to organiza- to tions that I thought were making a difference for children. On my own and Otscosso with the help of the producing entities of Soo s os,1001 The Hollywood Squares,I have been so Seteocs s Coo fortunate enough to make donations to Oye three organizations: MOVE Interna- Xstsot4 tional, L.A. Therapy For Children, and The Chime Institute For Children With Special Needs. I have participated in Yes, she has starred in such big screen numerous fundraisers for a variety of films as Steven Soderbergh's Sex, Lies, charities on various levels either through and Videotape, and appeared in the movie, Pretty Woman, with Julia Laura San Giacomo, film actress and star of my attendance and guest speaking, Roberts. And although she is about to the hit NBC show, "Just Shoot Me," is procuring items for silent auctions and begin her sixth season on the hit nightime scheduled* to appear at the Wednesday purchasing items in bidding wars, and comedy, "Just Shoot Me." if you were to evening Opening Reception of the TASH donating funds for entertainment. These ask Laura San Giacomo about her most Conference on November 14, 2001. charities are: The Lilly Claire Founda- enduring and satisfying 'vie, she'd tion for children and adults with Will- instantly tell you that it is that of being a Full details on the conference can be found at iams Syndrome; Best Buddies, an "momma" After alb says Ms. www.tash.org, or cal11-800-482-8274 and organization pairing typical and special Giacomo "working for the world is all request a conference brochure. needs high school, college, and young well and good but if you 're not actually being a parent then its all a sham." adults; Shane's Inspiration, an adaptive playground where children of all abilities comprehensive and complimentary can play together; SERT- Special Eques- program for his development. In my trian Riding Therapy (horseback riding battle with the Los Angeles Unified therapy for children with special needs); The Big Life - A Momma's School District (L.A.U.S.D.), I wrote UCLA early intervention program (a Version papers containing anecdotal evidence of birth through 3-year-old early interven- the benefits of these programs. Although tion program); MOVE International, a Tbecame an advocate for my son I won the battle to be reimbursed for therapeutic template for children with 1.when he turned three years old. By thatcertain of my son's therapies, this system physical disabilities; The Elizabeth time, I had accumulated enough stories could not open their minds or eyes to the Glazer Pediatric AIDS Foundation, from therapists and parents to know that benefits of these programs for other helping young children with AIDS and both the school system and the insurance children. My victory for my son was their families; City Of Hope, helping industry do not meet the more extensive labeled a "mistake" by the L.A.U.S.D., families with members diagnosed with needs of a child with disabilities. I and I fought through several attempts on decided to make a stink, start a fight, and their part to renege on legal agreements Continued on page 13 leave a wake in our trail for other that had been made through a mediation children. As a parent, one gets to experi- process. ence many different templates of therapy and their benefits first-hand all of the By the time my son was five, the little gains, nuances, and milestones on a Individual Education Plan process day-to-day basis. had created 54 goals for him, and we had been through five My son and I are fortunate to have been I.E.P.s, two informal hearings supported by NDT (neuro-developmen- and two mediations. It tal therapy) therapists, conductive seems incomprehensible educators, and therapists from the MOVEthat the special education dy;Yee. - ./` 4- (Mobility Opportunities Via Education) and physical therapy ,, A? ere,: e, departments are so 11.1;0p--g program. I have put into place for him a '_` \*. PrjrcsOr PUE U TillCONNECTION; SEPTUM' 2111 2001 TASN CONFERENCE Laura San Giacomo to Special Education Open 2001 TASH Annual of California State University, Northridge. Conference Because of such over- Continued from page 12 whelming parental support, the desperate need in the community, and the 10-year success of the CHIME Institute, a cancer; My Friend's Place, helping movement had started to form a fully homeless and runaway teens on the inclusive elementary school. I was streets of Los Angeles; Covenant House, among several parents asked to be a part helping homeless and runaway teens on of the steering committee and to attend the streets of New York and Los Angeles; country teaching other the initial conceptual and organizational as well as the myriad of photo requests educators the benefits of full meetings. I felt so fortunate to be with that come directly to me at my place of inclusion. these dedicated educators and for my son employment. to benefit from their inspired efforts. It is an honor to be recognized by the One of the contributions that I am most school's steering committee for my "baby Currently we are in the final draft of our proud of is the time that I have contrib- steps" in trying to address the needs of charter proposal and searching desper- uted to the public service announcement families of children with disabilities. My ately for a temporary space for the in "The More You Know" series on the main reason for doing this "speaking out" school. We are also applying to various subject of inclusive education. Because is not only for the benefit of my son, but foundations for grants for adaptive of Roz Weinman's generous spirit, my to be able to make a difference to another playgrounds, technical support for all of suggestion of developing a series of mother in need. I am grateful for the our students,-equipment for classrooms, service announcements was met with ground-breaking fights that mothers, and various other expenses not provided whole-hearted enthusiasm. After sharing advocates, and-lawyers have been to a charter school by the district. Not my research with her on inclusive consumed by over the past 30 years, and only does the mission statement of the education and sending my own draft of it is a conscious decision on my part to charter school incorporate inclusive the spot, her staff wrote an eloquent and try and take the world another step. education, but it also emphasizes aca- simple message to parents. The piece was demic excellence, comprehensive recognized by the Media Access For I am honored to be a part of the 2001 evaluations of all students, conscientious Disabilities Awareness Organization in citizenship, and an ethical curriculum TASH Annual Conference, helping all of their awards ceremony in the Fall of which includes life learning. There will us, together, to work toward "Imaging the 2000. Because these simple messages are Future." be 2-4 children with disabilities per shot so beautifully and aired during classroom, a percentage that directly prime viewing hours, it's not only reflects the population. *Ms. Giacomo's appearance has been confirmed, visually appealing, but a simple, straight however, her participation is contingent on her forward message tends to teach a lot of filming schedule. While attending the Charter School people. National Conference in Washington DC, we received an outpouring of attention In the spring of 2000, I was asked because not only were we the only school to a luncheon with the in the country with full inclusion central Dean of Education to our mission, we are also a teaching and the head of school dedicated to producing teachers knowledgeable in the benefits of full REMEMBER -- inclusion. Graduate and undergraduate Plan to participate in the rally for students from Cal State University, community living and equitable Northridge will be participating as treatment on Friday afternoon! aides and student teachers in the See page 24 of this issue of TASH Connections for more details. classroom. As student teachers graduate with the experi- ence of participating in this elementary school, they will go out to all parts of the PAR 18 155 USN CONNEMONS, SEPTEMBER2001 INCLOSIVE EDUCATION MEANS COLLEGE, TOO students with severe disabilities moved from fully inclusive elementary schools to high schools that were less than e welcoming, there remains the perception .P INCLUSION GOEST-03- that higher education is "unrealistic." "too difficult," or even a "waste of time COLLEGE: A CALL and money" for some people. TO ACTION BY CATE WEIR, CAROL TASHIE, Although it is widely acknowledged that AND ZACH ROSSETTI higher education is critical in terms of employability and lifelong earnings, it is still commonplace to exclude people with labels of severe disabilities from Olk college, based on out-dated notions of I I 0P dig P P [70 4 1.44 I P r.P disability and achievement. But is it reasonable and just to advocate for full inclusion in elementary and high schools, and still allow college to remain outside For all of her life, Kathy was told the energy, hard work and unwavering the grasp of so many? In other words, her disabilities would prevent her commitment to her goal. Together, this does full inclusion go to college? from achieving academic goals, collaboration works to support Kathy's especially the pursuit of a college dreams. The struggle for education. Her high school years were educational spent sitting in special education class- Jesse is also a college student, studying equity for rooms, excluded from the college Veterinary Technology. In many ways, students with preparatory classes she wanted to attend. she is a typical college student. She disabilities has "College is out of the question," she was studies hard, worries about exams and been expanding told. Her teachers and guidance counse- struggles with the Latin terms in animal since the lors encouraged her to be "realistic" anatomy and physiology. But if you ask beginning about her future plans. But Kathy her about her experiences, you will from the front wouldn't listen. realize she is also, in many ways, unique. door to the classroom door, When she was 27 years old, she con- Jesse has many labels that have led many from elementary tacted the local college and said, "I want people to believe she doesn't belong - and school to high school, from social to take some classes. " And now, two never would succeed - in college. But she integration to high academic expecta- years later, she is pursuing her college is succeeding in her goal to attend college tions. For twenty-five years, powerful degree at the New Hampshire Commu- and earn an associate's degree. Jesse is advocacy has taken place to assure that nity Technical College at Manchester. reaching her goal with the help of hard all students have real places in their The college has provided accommoda- work, family support, an individually public schools. But, in that same period tions, tutorial support, and assistive designed major that fits her career goals, of time, rarely has college been dis- technology that assist her in achieving herand an academic advisor that knows her cussed. For many, there continues to goals. Vocational rehabilitation provides potential and is working creatively with exist a belief that individuals with severe support in goal setting and in purchasing Jesse and the college faculty. In her own disabilities could never be successful in equipment she needs. The local adult words: "When I was born, they told my college. This misguided reality, based on support agency provides help at her home parents I should be in an institution. out-dated assumptions about what labels with class assignments. The Assistive Well, today, I am in an institution, but mean in terms of intelligence and Technology Low Interest Loan program it's an institution of higher education." competence, is often coupled with lent her money to buy a computer. And paternalism and motivated by a desire to most importantly, Kathy has provided In the past few years, individuals with protect people from what is imagined to labels of severe disabilities and their be certain failure. These factors work families have been declaring that access together to make dreams of college seem to college must be a choice for everyone. silly, unrealistic, and even dangerous for "When I was born, they told my Advocates like Kathy and Jesse and certain people. parents I should be in an institution. others have challenged society's preju- Well, today, I am in an institution, but dices and taken their rightful places on it's an institution of higher education." college and university campuses through- out the country. But just as it was when Continued on page 15 PAGE 14 S 6 TUN CONNECTIONS,SEPTUM 2111 INCLUSIVE EDUCATION MEANS COLLEGE, TOO INCLUSION GOES TO result, the percentage of students with programs that do little more than move COLLEGE: A CALL TO disabilities attending college has in- the special education classroom to the creased, from just 2.6% in 1978 to 11% college campus. Some school districts ACTION in 1997. However, this increase reflects are developing partnerships with one or Continued from page 14 primarily those students with disabilities more community colleges to run "transi- who still fit the mold of a "traditional" tion programs" for their post-graduates college student. In fact, the language of with severe disabilities. Some colleges the ADA, specifically the clause regard- are allowing students with severe ing "otherwise qualified," has been used disabilities access to nonacademic to exclude many students with severe classes, with little regard for student disabilities from colleges and universities choice, grades, or college credits. And of their choosing. while some may view these things as "a good start" or "better than nothing," it is One of the challenges to this call to actionindeed a slippery slope down which is that colleges and universities, by naturedreams of inclusive college communities and design, have historically been can easily slide. We must learn from the exclusive places. Higher education has past and refuse to support the develop- been used throughout time to "separate ment of special classes or programs on the wheat from the chaff," and to educate college campuses, for they, like special Iw fact, the La vt.guage'bf only a "worthy" subset of our citizens. education classes in public schools, will the ADA, specificalld the But why do we need to continue to accepteventually need to be dismantled in favor clause regain:113,1.g 'otherwise this? President Clinton, in his 1997 State of real inclusive choices. qua I ified,' has beew used to of the Union address, pronounced "... exclude vua vt.d studehts with every 18-year-old must be able to go to It is time to recognize that the values and severe disabilities froi i. college, and all adults must be able to beliefs of inclusion labels are not colleges a wol uh..iversities of keep on learning." Those of us who informative, disability is a social con- theirchoosiwg. advocate full inclusion for all citizens struct, and all of us are enriched by a I must begin to challenge this exclusive diverse community apply to higher domain. education as well. We must work to support people with severe disabilities in Along with these assumptions and fears In order to ignite this change, we must the attainment of their goals and ac- about disability and college success, therealso challenge the attitudes of paternal- knowledge that, in fact, inclusive also exists a passive approval of the ism and protectiveness that limit people's education means college, too! entrance criteria colleges use to judge choices and chances, at the cost of real suitability for acceptance. These criteria self-determination. Assumptions about This article is supported in part by the U S. continue to be based on narrow defini- ability and capability have led many of us Department of Education, Office of Special tions of intelligence, potential, and to advise students to avoid college, Education and Rehabilitative Services grant academic success. Therefore, when a because we "know" how hard college is #H078C60074 and the Office of Post high school algebra teachers claims that a and we "believe" they don't have what it Secondary Education grant #P3314990035. student with severe disabilities doesn't takes to succeed. Although this may be The contents of this paper do not necessarily belong in her classroom, the challenges seen, by some, as a "kindness," oppres- represent the policy or position of the U.S. are loud and sustained. But when a sion in the name of protection is still Department of Education. college admission counselor advises the oppression. exact same thing, there is curious silence. It is time to dispute exclusionary prac- As a result of the activism of individuals 0 tices at colleges and universities. and their families, as well as the work of a few federal initiatives, the doors to a The passage of the Rehabilitation Act of college education are beginning to crack D P 1973 made it illegal for the vast majority open. There are students with labels of of colleges and universities to discrimi- severe disabilities who are pursuing their nate on the basis of disability. However, educational dreams and, in so doing, II it was not until the passage of the Ameri- shattering many of society's assumptions. cans with Disabilities Act in 1991 that However, in our haste to move forward, most post secondary institutions began to some dangerous missteps are occurring. take this responsibility seriously. As a Some colleges are designing or hosting PAGE 15 is7 TUN CONNECTION&SEPTEMIEll 201 SEPTEMBER 2001 The Foundations of Inclusive Education: A Compendium of Articleson Effective Strategies to Achieve Inclusive Education Edited by Douglas Fisher and Diane Ryndak Foreword by Steve Taylor Consistent with the spirit of TASH, this book of readings from JASH includes some of the most important ...articles about inclusive education that have been published in recent years. The compendium includes the following subject areas: - From Least Restrictive Environment to Inclusion: Conceptual Underpinnings and Overridding Issues Perceptions of Inclusion and Attitudes Towards Students with Disabilities :From Facilitation of Social Interactions to Belongingness: A Change of Focus :Strategies That Facilitate Inclusion "These JASH articles have helped shape my world view about the nature and nuance of inclusion; they illustrate important dimensions in the dynamic evolution of LRE policy" Anne Smith, U.S. Department of Education "The authors represented in this new resource are the most qualified specialists researching and applying strategies for inclusive education today." Norris Haring, University of Washington `A book rich with the basic concepts, supportive research, and change strategies critical to establishing inclusive schools." Martha Snell, University of Virginia "The Foundations of Inclusive Education explains not only the rationale, but also the practicalities of creating and maintain- ing inclusion." Douglas Biklen, Syracuse University "Finally, a collection of seminal readings university instructors can use to provide both contemporary and historical readings for any number of classes in special education!" Jacqueline Thousand, California State University, San Marcos This textbook is a must for all who are struggling with the complexities of inclusive education. Place your order now for the next semester! Yes, I would like to order 1-25 copies at $19.00 each (member rate); $23.00 (non-member rate) Number Ordered: 26-50 copies at $16.00 each (member rate); $21.00 (non-member rate) *Add $3.00 S&H for every 50+ copies at $13.00 each (member rate); $16.00 (non-member rate) $30.00 within U.S. Name: *Add $6.00 S&H for every Organization or University: $30.00 outside US. Address: City /State /Zip or Postal Code Total for Foundations: Country: Phone: E-mail: Total for S&H: $ Payment must be in U.S. Funds Check enclosed 0 MasterCard 0 Visa 0 Discover TOTAL ENCLOSED: Card # Expiration Date: Signature: For more information or to order by phone, call 410-828-8274, ext. 0. Fax orders to 410-828-6706, or mail to TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, Maryland 21204, USA ICJ 158 MI VI TUB CONNECH011i, SEPTEMBER 2111 ABE STUDENTS BEING PREPARED FOR ADULT LIVES? Schools are being held High School Inclusion + related to developing careers, accountable not only community living skills or for the outcomes of Seamless Transition = opportunities, and typical students, but for those Desired Outcomes postsecondary education for of students with disabilities as students about to age-out of well. The expectation is that their local public school system education should contribute to BY CAREN SAX, DAVID (Certo & Sax, 1999; Sax, the preparation that all U.S. 2000). citizens need to fully and NOYES, AND DOUGLAS meaningfully participate in FISHER Following graduation and the public life. This right is deeply end of public school responsi- embedded in U.S. law and bility, these systems share the heritage; it is an inalienable costs of maintaining and right (Gilhool, 1976). It is the expanding work and non-work responsibility of public preferred activities seamlessly education to help ensure that all on the first day after this formal American citizens, whatever exit. In other words, a their disabilities, are afforded student's last day in public an equal opportunity to actively partici- Wehlage and Rutter (1986) argued that it school looks no different from the first pate in all community activities, events is the school, and not the student, that day supported by adult service delivery must change if appreciable progress is to and opportunities. . systems. be made. It has been hypothesized that Outcome-based questions have become a two significant changes to the service Given the access to both inclusive standard for evaluating the effectiveness delivery system could impact the education and a seamless transition, what of education. For example, "Has the employment outcomes for students with are employment outcomes for students school system done its job in preparing disabilities - inclusive education and with significant disabilities? This article students with disabilities for adult lives, seamless transition from school to career compares the outcomes for students with which involve active participation in (Certo, Pumpian, Fisher, Storey, & significant disabilities aging out of public work, home, educational and social Smalley, 1997; Fisher & Sax, 1999; school who experienced both inclusive environments?" Gerry & Certo, 1992; Katsiyannis, de education and a seamless transition with Fur, & Conderman,1998; Lichtenstein, those who did not. Data from the National Longitudinal 1993; Meyer, 1994; Phelps & Hanley- Transition Study (Wagner. 1993), as wellMaxwell, 1997; Szymanski, Hanley- Method as other studies (e.g., La Plante, KennedyMaxwell, & Asselin, 1992). Participants: & Turpin. 1996; Malakpa. 1994; District.This district was a medium Mithaug, Moriuchi, & Fanning, 1985) First, inclusive education has been sized school district in Southern Califor- have documented poor post-school defined by the National Association of nia. The total enrollment is just over outcomes for students with disabilities. State Boards of Education (NASBE, 21,500 students in grades 9 to 12. Of In addition to high drop out rates (overall1995) as follows: At its core, inclusion those students, 78% are white, non- 58%), these students often exit into low- means that students attend their home Latino; 16% are Latino; 5% are African- wage jobs. have higher arrest records school along with their age and grade American; 5% are Asian-Pacific Islander; (44%), and are unemployed in vast peers. A truly inclusive schooling and 2% are Native American. Every numbers (60%). It is estimated that environment is one in which students school in the district has at least 9 approximately 75 percent of adults with with the full range of abilities and different languages represented, and one a label of "severe" disabilities and 92 disabilities receive their in-school school has 17. The district has developed percent of adults with a label of "pro- educational services in the general Individual Education Plans (IEP) for found" disabilities are unemployed (La education classroom with appropriate in- nine percent of the students. Plante, Kennedy, Kaye, & Wenger, class support. 1996). According to Wagner (1995) and Students.All students from this district Blackorby and Wagner (1996), only 17%Second, a "seamless transition" describes who met the California definition of of students with multiple disabilities the use of resources from school and "severe disability" and who were exiting were employed or received post-school systems (e.g., Department of from the public school system were postsecondary education during the first Rehabilitation, Department of Develop- selected for this study. This resulted in five years after exiting school. mental Disabilities) to share the costs of supporting a student-driven approach to choicemaking and transition planning Continued on page 18 ME I/ TABU CONNESUM BEFTEINIEN2001 159 ARE STUDENTS BEMO PREPARED FOR ADULT LIVES? High School Inclusion + group. The data was reviewed and None of the comparison group students Seamless Transition = summarized accordingly. experienced a seamless transition. These Desired Outcomes students often visited the adult program Findings Continued from page 17 or sheltered workshop in the weeks prior The data indicate that students with to the end of public school services. significant disabilities who experienced However, the staffing patterns, environ- inclusive education and a seamless ments, and expectations changed dra- the identification of 33 students. Two of transition entered their adult lives well matically when school-based services the 10 high schools in the district partici- situated for success. Four of the six ended. For example, on the Tuesday pated in a transition service integration students in the target group experienced a following the completion of school- planning process and provided special seamless transition, meaning that there funded services, these students rode education services to high school aged had been significant coordination different buses on new routes, met new students in general education classes. A between the public school system and the support staff who often did not know the total of six students transitioned out of adult service delivery system such that student's goals, and faced unfamiliar these two schools during the year of the the student did not experience a disrup- environments in which to work. Most study. tion in services. difficult for many of these students was the fact that the adult agency had to "start The remaining 27 students attended one For example, the school system con- over with assessments" as they became of the remaining eight high schools and tracted with direct service personnel acquainted with the students. did not experience a seamless transition (e.g., job developer, job coaches) from the but were mainstreamed in some general adult service delivery system during the In terms of employment outcomes two education classes such as English, art, student's final year of public school months after leaving school, students who physical education, and music. This service (typically when the student was experienced inclusive education and geographic selection process ensured that 21 years old) so that the same staff were seamless transition fared well. While the there were students in both the target and consistent post-transition. Similarly, actual numbers of students are low, comparison group who had similar types students were scheduled according to average wages and hours per week of disabilities and level of support needs. their work and non-work activities worked are -consistently higher for the departing from the traditional school target group of students. These results Data Collection and Analysis calendar and time frames. stand out in stark contrast to the national During the week following the end of the outcome of employment and/or school year, a school district employee For example, one student's employment postsecondary education within the first asked the primary advocate teachers for required that he work during late after- five years after exiting school, cited the 33 students with significant disabili- noons and often on holidays. The earlier. ties about the transition process. The integrated work environments and non- following information was logged for work activities were organized during Interestingly, the types of integrated each student: seamless transition (last dayperson-centered planning sessions in employment options were similar for the of school mirrored first day of adult which the student, his or her family and two groups, but students inthe compari- program), adult program provider, and friends, school personnel, and adult son group were less likely to access those location of adult program. agency staff were all present. Thus, the jobs given that they were placed in day after the termination of public school sheltered workshops. The sources for the Two months later, this school district services did not vary greatly from what jobs held by students in the target group employee contacted the adult service the student had been experiencing. were more varied and included recom- providers and requested the following mendations by high school peers. In information about the 33 students: job, addition, students in the target group wages. hours worked per week, and types were more likely to engage in integrated of integrated. activities in which the activities during their non-work hours. individual participated during non-work These activities included community hours. The data were provided to us on college and adult school classes, recre- code sheets. We did not have student ation and fitness centers, and community names or adult service provider identities stores and services. matched with the student data. However, the data were disaggregated by target group (those who were included and participated in the transition service integration project) and comparison Continued on page 19 TROD COMNICTIONS, SEPTEMBER 2001 ARE STIMENTS BEING PREPARED FOR ADULT LIVES? High School Inclusion + students with significant disabilities in historical underemployment and unem- Seamless Transition = general education classes experienced a ployment of individuals with significant Desired Outcomes wide range of friendships. As typical disabilities can be systematically ad- high school students began their part- dressed. Continued from page 18 time jobs during their junior and senior years, they often informed the special Two of the important factors in achieving educators of jobs at their place of these outcomes are access to: 1) general Discussion employment. These job recommenda- education classes, curriculum, and peers; The purpose of this study was to review tions were invaluable. and 2) a seamless transition that connects the outcomes for students who experi- public school services and those of the enced inclusive education and a seamless Thus, we believe that access to general adult service system. transition. More specifically, we were education classes had a significant interested in learning if students with impact on the integrated work outcomes experienced by the target students. It is Caren Sax, David Noyes and significant disabilities who experienced Douglas Fisher are affiliated inclusive education within academic important to note that the comparison students experienced a segregated with San Diego State University. classes were at risk of limited options for Comments regarding this their adult lives. While the sample was academic curriculum and a significant number of hours spent in homoge- article may be directed to small and we encourage a cautious Douglas Fisher, Interwork review of the findings, the data suggest neously-grouped community-based instruction during their high school Institute, San Diego State that no harm was done and, in fact, the University, [email protected] outcomes for the target students in this years (age 14-18), and the vast majority study were better than the outcomes for of them transitioned into a sheltered other students in the district in both work workshop. and non-work activities. The second variable we believe was References important was the seamless transition Blackorby, J., & Wagner, M. (1996). We believe that the results were influ- planning that occurred for the target Longitudinal post school outcomes of enced by two variables. First, over the students. As school staff and adult youth with disabilities: Findings from the course of their high school years during providers talked with one another, national longitudinal transition study. which they attended general education worked together, and shared vital Exceptional Children, 62, 399-413. classes, the target students developed a student support information, they were number of skills, relationships, and able to individualize supports, create Certo, N. J., Pumpian, I., Fisher, D., behaviors that may have increased their workplace accommodations, and Storey, K., & Smalley, K. (1997). employability. In addition to the implement consistent behavioral supportFocusing on the point of transition. curriculum and content which is beyond plans. This seamless transition service Education and Treatthent of Children, the scope of this study, students were delivery model provided students and 20(1), 68-84. expected to arrive on time, engage in their families with an entire year to social exchanges, and attend to instruc- evaluate the appropriateness of the adult Fisher, D., & Sax, C. (1999). Noticing tions in their high school classes. In agency and its services. This arrange- differences between secondary and terms of relationships and peer support, ment significantly minimized the postsecondary education: Extending disruption students typically experience Agran, Snow, and Swaner's discussion. when transitioning from the public Journal of the Association for Persons school system to the adult provider with Severe Handicaps, 24(4), 303-305. network. As school staff and adult providers Gerry, M. H., & Certo, N. J. (1992). talked with one another, worked together, Conclusion Current activity at the federal level and and shared vital student support Although the number of students served the need for service integration. The information, they were able to individu- in this pilot study was small, the findingsFuture of Children, 2(1), 18-26. alize supports, create workplace represent all of the students with accommodations, and implement significant disabilities who aged out of Gilhool, T. K. (1976). Education: An consistent behavioral support plans. This arrangement significantly the 21,500-student school district. inalienable right. In F. Weintraub, A. minimized the disruption students Based on these findings, we believe that Abeson, J. Ballard, & M. Lavor. (Eds.). typically experience when transitioning school systems can prepare students Public policy and the education of from the public school system to the with disabilities for quality adult lives. exceptional children (pp. 14-21). Wash- adult provider network Further, the outcomes for the target ington, DC: Council for Exceptional group of students demonstrate that the Children. _ Continued on page 20 PAGE 19 161 TUNCONNECTIONS,SEPTEMBER 2111 ARE STUDENTS BEING PREPARED FOR ADULT LIVES? High School Inclusion + Pumpian, I., Certo, N.J., & Sax, C. Seamless Transition = (1999). Progress Report, Year 02, AY 97- 98: Focusing on the point of transition: A University of Thiedo Desired Outcomes service intergration model. Funded by COLLECE OFEcucKnoN Continued from page 19 the U.S. Department of Education, Office of Special Education Programs, Postsecondary Model Demonstration Tenure Track Faculty Position in Katsiyannis, A., deFur, S.. & Program, Washington, D.C. Conderman, G. (1998). Transition Area of Special Education - Severe services - systems change for youth with Sax, C. (2000). Do systems really Disabilities disabilities? Journal of Special Educa- change? The point of transition service tion, 32, 55-62. integration project. TASH 1999 Confer- ence Yearbook, 1(1), 163-169. Advanced Assistant or Associate La Plante, M.P., Kennedy, J., Kaye, S.H., Level Professor (Severe Disabili- ties). Faculty member will coordi- & Wenger, B. (1996). Disability statistics Szymanski, E.M., Hanley-Maxwell, C., nate undergraduate and graduate abstract, No. 1 I . Washington, DC: US. & Asselin, S.B. (1992). Systems interface: degree programs in area of severe Department of Education. National Vocational rehabilitation, special Institute on Disability and Rehabilitation education, and vocational education. In disability, with emphasis on persons with developmental or behavioral Research. F. R. Rusch, L. DeStefano, J. Chadsey- Rusch, L. A. Phelps, & E. Szymanski disabilities. Lichtenstein, S. (1993). Transition from (Eds.), Transition from school to adult school to adulthood: Case studies of life: Models, linkages, and policy (pp. ). Candidates should have established an emerging record of higher adults with learning disabilities who Sycamore, IL: Sycamore. dropped out of school. Exceptional education teaching, publication, Children, 59, 336-347. Wagner, M. (1993). The transition conference presentations, grant experiences of young people with support, and professional service Malakpa, S. W. (1994). Job placement ofdisabilities. A summary of findings from focused on persons with severe disabilities. Earned doctorate in blind and visually impaired people with the National Longitudinal Transition special education. Previous profes- additional disabilities. Re:view, 26, 69- Study of Special Education Students. 77. Menlo Park: SRI. [ERIC Document sional or classroom teaching Record # EC302815]. experience is desirable. Salary and Meyer, L. H. (1994). Editor's introduc- benefits are competitive and include tion: Understanding the impact of Wagner, M. (1995). Transition from summer session option. inclusion. Journal of the Association for high school to employment and Application deadline is January 15, Persons with Severe Handicaps, 19, 251- postsecondary education: Interdiscipli- 2002. Please send curriculum vitae 252. nary implications for youths with mental retardation. Paper presented at the 119th and 3 letters of reference to: Dr. Mithaug, D., Moriuchi, C., & Fanning, Annual Meeting of the American William Gray, Coordinator of P. (1985). A report on the Colorado state- Association on Mental Retardation, San Faculty Search Committee, College of Education, Snyder Memorial, wide follow-up survey of special educa- Francisco. tion students. Exceptional Children, 51, 2810 W Bancroft, Toledo, OH 397-404. Wehlage, G. G., & Rutter, R. A. (1986). 43606. Please contact Dr. William Dropping out: How much do the schools McInerney via e-mail National Association of State Boards of contribute to the problem? Teachers ([email protected]) or phone at (419) 530-2284 with Education [NASBEJ. (1995). Winning College Record, 87, 364-392. ways: Creating inclusive schools, specific questions re: area of severe classrooms, and communities. Report of disability. the NASBE Study Group on Special Education. Washington, DC: Author. The University of Toledo is a state- Phelps. A., & Hanley-Maxwell, C. supported, comprehensive doctoral (1997). School-to-work transitions for level institution and is an equal youth with disabilities: A review of access, equal opportunity, affirma- outcomes and practices. Review of tive action employer and educator. Educational Research, 67, 197-226. PAGE 201 6 2 TUBCONNECTIONS, SEPTEMBER 2001 SEMINAR2001 The TASH Annual Conference for is already a great value. But if C all you want to stretch your confer- ence once dollars even farther, share Confer some of the work with us, and well help with some of your VoleeerSt nt . expense! We make it even easier for you to attend the TASH Conference! Just volunteer 10 hours and you'll receive FREE conference registration (a $79-$369 value depending on your registration category). When you think TASH conference volunteer, think interesting, stimulating and fun! That's because many of the conference volunteer assignments involve one-on-one interaction with other attendees, presenters and exhibitors. Whether you volunteer to engage our youngest conference attendees by assisting at child care, (Club TASH Child Care Volunteers), assist keynote speakers at the General Sessions (General Session Volunteer), or help attendees in getting registration packets and other handouts (Registration Volunteer), you will enjoy the time that you spend as a TASH conference volunteer. We have volunteer tasks_ and times to fit almost any schedule. There are even-pre- conference volunteer assignments available in case you arrive in Anaheim a little early. Don't delay! Volunteer assignments are made on a firs. t come, first served basis. Contact Priscilla Newton, Volun- teer Coordinator, at 410-828-8274, ext. 102 or send an e-mail to pnewton@tash:org and request a volunteer registration application today. The World Congress & Expositionon Disabilities Sept. 28-30, 2001 Now in its second year, the World Congress & Exposition on Disabilities (WCD) presents a comprehensive forum to educate, inform, and provide a useful exchange of ideas for persons with disabilities and special healthcare needs, as well as for family members, caregivers and those who work in the disabilities field. The event, scheduled for September 28 - 30 at the Georgia International Convention Center in Atlanta, is organized by H.A. Bruno, LLC. The conference portion of the show, comprised of over 65 seminars, is produced by the EP Foundation for Education, Inc., a 501(C)3 not-for-profit organization. CNIE and CEU accreditation is available for many disciplines. Sessions on adapted physical education are sponsored by PALAESTRA magazine and the American Association for Active Lifestyles & Fitness (AAALF). Attendees will also have an opportunity to examine the latest products and services from more than 250 exhibitors representing pharmaceutical, computer, automotive, mobility, personal care, insurance, nutrition, and travel industries. WCD Special features will again include a career fair, a sports and recreation activity center sponsored by McDonald's Corp. and U.S. Disabled Athletes Fund, and an assistive technology learning center. For more information on WCD, visit www.wcdexpo.com or call 877-WCD-EXPO TASH CONNECRUS, UP221211 2001 PaGE 21 103 TRANSITION FROM SCNOOL TO SORT LIFE grated high school programs The Whittier Area Coop- and work towards their di- erative Special Education ploma. The Transition services Program (WACSEP) a cooperative of seven participat- are available to those students who need the additional ing school districts in the greater albTransition Is aICA Whittier, California area serves support to complete their middle school, high school, and 1 Component of theP Individualized Transition Plans (ITP). Occasionally some young adult age students with Education Process disabilities. In compliance with 4students are working towards completing their diploma. IDEA's requirements for Transi- BY RICHARD L. ROSENBERG tion, services are provided both and The Transition Program for at the school site level for BONNIE BOLTON students ages 14 and older and students ages 18-22 has been through a regional Transition provided to the students on the adult education campus. This Program for students ages 18-22. Transition services follow a provides the opportunity to student from age 14 until gradua- establish age appropriate peers tion. for these students. On the adult campus the students have access to adult and vocational school The Transition Program includes students reach their goals and dreams. Their classes, as well as opportunities at break with severe disabilities and is designed to goals and dreams have always been and lunch to interact with other adult provide instruction in the activities of unique; therefore, services need to be students. In addition, the adult school daily living, career and vocational skills, crafted to meet their needs rather than campus is centrally located and acces- general community skills, and supporting services based on staff assumptions, sible by public transportation, and within those student who are working towards a family expectations, or current curricu- walking distance to many jobs and diploma by age 22. These transition lum. Students attend their IEP meetings community activities. services are available to students from the and give input into goals and objectives. Whittier Union High School District and The goals and objectives drive the The mission statement for the Transition El Rancho Unified School District. program. WACSEP has created a means Program is: for staff to work on a protocol in order to The Transition Program was established develop meaningful Individualized To empower individuals with disabilities to as a community based program with Transition Plans (ITP). The protocol maximize the quality for their lives through seven life domains as the foundation. The includes review of the student history, seven domains are identified as: employment, inclusion, and interdependence current interest inventories and voca- in their home communities while tional evaluations, student interview, 1. Vocational transitioning from school to adult life. parent/family interview, and working 2. Recreation / Leisure with the teaching and support staff to Following is an individual story, as well 3. Domestic / Independent Living create a meaningful ITP that will be as a story about a group of students who Skills reviewed on a regular basis, updated 4. Community / Consumers have been working at Old Navy, a each year, and modified as necessary to clothing store, for two years. 5. Community / Mobility support the student moving from school 6. Communication to adult life. Thomas is a student receiving transition 7. Behavior services from Whittier Area Cooperative. Independent Living Skills and aThe Whittier Transition Program has He has significant physical challenges and Functional Vocational always made work a high priority for has had some challenges controlling his Evaluation students. This has proven to be a very body and language. Thomas has had important turning point in the student's great success utilizing facilitated commu- Transition Services has evolved within life as he/she moves from the compre- nication. Thomas, his family, the Whittier Area Cooperative Special hensive inclusive high schools to adult vocational counselor, and the staff met Education Program (WACSEP) over the life. In addition, the relationship with individually and then collectively to past 19 years. As the staff reflects on the the community colleges has also been create the Individualized Transition 19-year history of the program, the valuable. Students within the Whittier highlight for staff has been to listen and Area Cooperative participate in inte- hear each student in assisting them to Continued on page 23 ME 22 164 TASK CONNECTION& SEPTEMBER 2001 TRANSITIONFROM SCHOOL TO ADULT LIFE Transition Is a asking the question: Are Thomas' IEP "Speak" for Component of the (Individualized Education Plan) and ITP themselves; (Individualized Transition Plan) meeting Solve prob- Education Process his needs? Are they appropriate for his lems and make Continued from page 22 future goals and objectives? This con- decisions; stant questioning and working with the Know one's families and staff is one of the strengths rights and of the Whittier Area Cooperative Special Program (ITP) for Thomas. Thomas is responsibilities; working toward a high school diploma Education Program (WACSEP). Contribute to and it might take an additional year or the community; The second example of the Transition two to earn all the necessary credits. Accept one's After two additional years of high school Program at work is that of a group of differences; Thomas may continue to work on his students who have been working at Old Deal with labels and prejudices; diploma, as well as join the staff and Navy, a clothing store, for two years. Increase self-awareness; and The students have significant challenges students in the Transition Program for his Solve common problems. and through augmentative and alternative last two years. During those final two years as he works on his diploma, he will communication have requested to work Many teachers and parents see self- also work on the necessary community in retail sales. The students work three advocacy as a threat. In reality, it is one days per week for three hours per day. and vocational skills to complete his of the most effective skills supporters can transition from school to adult life. The jobs that are completed with the help help students to develop. Thomas and the team are continually of a job coach is to assist with the shipping and receiving, light mainte- Summary nance, cleaning and organizing the shelves, folding clothes, and placing Implementation of the Transition The following was an agenda for clothes on hangers. Some of the students Services part of IDEA 1997 requires Thomas' team meeting, which in- have progressed to customer service, teamwork between educators, parents cluded Thomas and his family: including assisting customers in the and the student for whom the Individual- dressing room. ized Education Plan (IEP)/Individual- Where does Thomas want to be after ized Transition Plan (ITP) is developed. high school? How can we all work to get One area that is a high priority of the More than an activity of filling out him there? Transition Services of WACSEP is self- forms, Transition Services should What supports do we have to help advocacy and understanding one's rights. consistently push the IEP team to look to put into place in order for Thomas to One's ability to advocate for what he/shethe future and to incorporate the future access the regular bus? truly wants not just pleasing one's plans into attainable short-term goals. parents or teachers, but really stating The Whittier Area Cooperative seeks to Help Thomas to create a balance of what he/she desires to do when he/she not only provide services to students with academics and quality of life at high leaves school is crucial. Many of the disabilities to achieve academically, but school and beyond: students have not had opportunities to to become productive members of their dream and explore the various options families and home communities. Means of getting a diploma: for his/her future. Process; Value; and Outcome Transition is a multifaceted component Means of communicating and Self-advocacy is the ability to speak up of the educational process. The student developing relationships: and receive supports from others as they is reaching the age of majority; the family Typing; Writing; Facilitated become more independent. The is dealing with the change in perception Communication Whittier Transition Program offers self- of their son or daughter from child to advocacy groups that are either facili- adult. This process of change and growth Help Thomas to identify and access tated by peers and/or staff. The goal is begins in early childhood with that first Transition Services: for the students to feel comfortable in graduation from early intervention sharing their concerns and issues and services and continues past the window Functional Skills development; Communication; Behavioral needs; become confident in advocating for their of time that the student will be in public Personal Grooming and Hygiene desired outcomes. Those participants in school. Transition Services at the middle self-advocacy groups work on their own school and high school level, appropri- Where will Thomas want to live after or with a partner to be able to: ately planned and implemented, prepares school? What adult services will be available? 4 Inl!"" 10 Continued on page 24 PAGE 23 TIM CONNECTION& SEPTFAMEI2111 TRANSITION FROM SCHOOL TO ADULT LIFE Transition Is a Component of the Education Process Continued from page 23 Rally for A the student and family to begin yet Real Life another new stage of life adult life in the home and in the community. In the Richard L. Rosenberg, Ph.D. is the Lead Vocational Coordinator and Community! Bonnie Bolton is the Transition Program Specialist for the Whittier Union High School District. are invited to celebrate with us as we reaffirm our commitment For more information about the toto a real life for every citizen with disabilities and to equitable wages Whittier Area Cooperative Special and benefits for every person who provides assistance, coaching. Education Program, please contact support and services in the community!! Whittier Union High School, 9401 South Painter Ave., Whittier, CA 90605, (Phone) 562-698-8121 Celebrants will be joined by Cal-TASH, TomGilhool, ext_1250, or send an e-mail to Max Lapertosa, Barbara-Ransom and Judy Grant of Meet and greet the families and self-advocates who have brought about IMPORTANT the Sanchez action and add your voice to theirs in solidarity for thecause NOTICE: of community! Co-sponsored by Cal TASH, DREDF. and PILCOP. TASH Tech Cancellation The following TASH Tech Session has been cancelled: FRIDAY, NOVEMBER 16, 2001 T-7 Creating Inclusive Childcare Settings Activities will begin at 12:00 noon in the Ballroom of the Marriott! We apologize for any inconvenience. There is an array of outstanding TASH Techs and Saturday Institutes scheduled at this year's TASH Annual Conference. For a complete listing, visit our web site at www.tash.or, see the July/August 2001 issue of TASHConnections;or call 1- 800 -482- 8274 and request a copy of the conference brochure. BEST COPY AVAILABLE PAGE 24 Till CONECTIONS, SEPTE11181 2111 CENTER ON HUMAN POLICY Shafik Asante was a leader in organizing to fight against injustices in the African American community, as well as in the struggle for better community services. He lectured internationally to diverse groups on community organizing. Topics ad- dressed in this book include alliance building, inclusive community building, Resource Review: Promoting Friendships, disability issues, and leadership and Community Connections, and Membership organizing, among others. The essays are based on reflections on the author's personal and work experiences. TITLE: Building stronger communities for all: Thoughts about community participa- tion for people with developmental disabilities AUTHOR: Bogdan, Robert, & Taylor, Steven.J. PUBLICATION INFORMATION: In press, In A. Tymchuk, K.C. Lakin, & R. This resource review highlights written by people with disabilities, parents, Luckasson (Eds.), The forgotten genera- materials that provide many and advocates from within and outside of tion: The status and challenges of adults examples of strategies to promote the service system. Finally, chapters in the with mild cognitive limitations. Baltimore: and support community connections, and third section offer important strategies Paul H.Brookes Publishing Co. offer discussion of the challenges and based upon focused efforts to assist people complexities of community-building.It is to form friendships and connections at The authors question how can we think taken from a larger information package on work, in community associations, and about having people with disabilities be a "Promoting Friendships. Community within the community at large. part of the community when community Connections, and Membership" produced has become such a problem for everyone by the Center on Human Policy. else, when community is under siege? They TITLE: Amistad: Stories of Hispanic suggest that we must approach the chal- 'TILE:Friendships and community children with disabilities and their lenge of helping people with disabilities to connections between people with and friendships become part of the community with full without developmental disabilities AUTHOR: Beach Center on Families and appreciation of what is at stake. Thinking AUTHOR: Amado, Angela Novak (Ed.) Disability about community for people with develop- PUBLICATION INFORMATION: 1993, PUBLICATION INFORMATION: 1997, mental disabilities might help us think about Baltimore: Paul H. Brookes Publishing Co. Beach Center on Families and Disability, it for ourselves. This essay presents some 3111 Haworth, University of Kansas, thoughts and observations on what it This book contains chapters that discuss a Lawrence, KS 66045 means for people with developmental wide variety of critical issues related to disabilities to be part of the community. friendship and people with developmental This monograph, aimed primarily for disabilities.It is acknowledged that families and educators, is the result of a "supporting friendships can be fragile, study on friendship that focused on the TITLE: Involving All Neighbors: Building delicate, magical, and sensitive work. It is Hispanic population. The intent was to find Inclusive Communities in Seattle not work that easily fits into formalized examples of "successful" friendships for AUTHOR: Carlson, Carolyn systems and agency patterns" (p. 373). children who experience significant PUBLICATION INFORMATION: 2000, Authors discuss dilemmas and challenges disability. The stories are presented here, Seattle Department of Neighborhoods, 700 related to this. The book is divided into followed by a concluding section outlining 3rd Avenue, Arctic Building, Suite 400, three sections: (1) dimensions of friend- "friendship tips" and giving additional Seattle, WA 98104-1848, ships. (2) stories of friendships and (3) resources. (206) 684-0464 strategies for building friendships. Chapters in the first section include an introductory This booklet was produced through the piece that discusses dimensions of friend- TITLE: When Spider Webs Unite: Chal- collaboration of the Seattle Department of ship. issues of attraction and power, and lenging Articles and Essays on Community, Neighborhoods and the Washington State context of community; loneliness; intimacy Diversity and Inclusion Division of Developmental Disabilities.It and sexual relationships: the gendered AUTHOR: Asante, Shafik documents the "Involving All Neighbors" context of friendships; and friendships PUBLICATION INFORMATION: 1997, program, a program to promote neighbor- between "staff" and "clients." The second Inclusion Press, 24 Thome Cresc., hood involvement by people with disabili- section contains stories of friendship Toronto, Ontario, CANADA M6H 2 Continued on page 26 1 " PAR 25 A- DISH CONNEC110111 SEPTEMBER2111 CENTER ON4) ROMAN POLICY Resource Review: Promoting stories, as well as in some concluding found to be effective in helping to promote Friendships, Community remarks, are many lessons learned about community membership for older adults the successes and challenges of community with disabilities. Examples and stories are Connections, and Membership building, reflections on the ways that drawn from experiences of community Continued from page 25 human service workers need to avoid builders and individuals with mental imposing their "professionalism" on retardation and other disabilities who everyday community life, as well as participated in a demonstration component ties. One unique aspect of this program is reflections on the ways that engaging in of The Community Membership Project, a that it is located not within a disability community building challenges and training initiative grant funded by the agency, but within the City of Seattle's potentially transforms human services. Administration on Developmental Disabili- Department of Neighborhoods. ties and awarded to the Center for Aging Persons with Developmental Disabilities at The booklet contains many different TITLE: The Common Thread: A Collec- the University Affiliated Program of examples of people's involvement in tion of Writings about Friendships, Indiana. The stories are interwoven with Relationships, and Community Life neighborhoods, including individual information and interactive training connections as well as participation in EDITORS: Gretz, Sharon, and Ploof, activities, based on a community-building Dianna neighborhood organizations and projects. approach. The information in the guide is The stories are accompanied by reflections PUBLICATION INFORMATION: 1999, applicable to supporting people of all ages in on some of the lessons learned. Pennsylvania Developmental Disabilities community membership. Council, Room 559, Forum Building, Commonwealth Avenue, A conclusion offers some overall lessons learned from the "Involving All Neighbors" Harrisburg, PA 17120 TITLE:Friends: A manual for connecting program, and the appendix contains the persons with disabilities and community mission of the Department of Neighbor- The stories in the monograph were members hoods, and a summary of key aspects originally published in a newsletter, "The AUTHOR: Human Services Research and related to what makes neighborhood Common Thread." The newsletter grew -Development Center organizations inclusive, qualities of out of the work of the editors and others as PUBLICATION INFORMATION: community connectors, and suggestions for part of the Community and Relationship Human Services Research and Develop- ways that neighborhood organizations can Building Project at the UCP of Pittsburgh, a ment Center, Minnesota Developmental include people with developmental disabili- project funded through a grant from the Disabilities Council, 300 Centennial Office ties. Pennsylvania Developmental Disabilities Building, 658 Cedar Street, Council. The purpose of the newsletter St. Paul, MN 55155 Overall, this booklet contains many diverse was to share stories about community examples of neighborhood involvement connections and relationships and in doing This manual grei-nr out of the "Friends" and reflections and lessons based on these so to stimulate readers to think more deeply project, a one-year grant project sponsored experiences. As such, it offers creative ideasabout these aspects of human social life.In in 1989-90 by the Human Services Research and strategies for all those who are reflecting on the significance of the title of and Development Center of St. Paul, interested in helping to promote communitythe newsletter and this monograph, the Minnesota, and funded by the Minnesota connections and meaningful community editors' write: "There are many things Governor's Planning Council on Develop- participation for people with developmental operating in today's society which work mental Disabilities. The purpose of the against a strong social fabric. Many of us disabilities.Finally, it provides a wonderful project was to learn about and develop feel deeply that when some people are example of partnership between community methods for the staff of residential service and disability focused organizations. excluded from the life of a community, the agencies to support people with disabilities social fabric contains a hole. Perhaps each in establishing friendships and relationships of our efforts can be considered to be with nondisabled people in their communi- TITLE: Citizen Participation: Connecting weaving threads that have the potential to ties and to assist people with disabilities in People to Associational Life repair the hold and make some of our being more a part of their communities. AUTHOR: Gretz, Sharon communities WHOLEat least in some Sections of the manual contain information PUBLICATION INFORMATION: 1992, places and for some people." on: planning with people; strategies to In Schwartz, David B., Crossing the River: facilitate connections; introducing people; Creating a Conceptual Revolution in providing continuing support for relation- TITLE: A Guide to Building Community Community & Disability. Cambridge, MA: ships and friendships; assisting others in Brookline Books. Membership for Older Adults with Disabili- meeting and becoming friends with persons ties with disabilities; and agency support for This chapter describes some of the commu- AUTHORS: Harlan, Jane, Todd, Jennie, relationship building.It describes the and Holtz, Peggy nity-building efforts of a "citizen participa- process used in the Friends project, tion" project funded by the Pennsylvania PUBLICATION INFORMATION: 2001, strategies that seemed to be more and less Training Resource Network, Inc., Developmental Disabilities Planning effective, and it contains many stories and Council. The chapter contains a number of P.O. Box 439, St. Augustine, FL 32085-0439 examples. stories about the creation of community connections. Embedded within these This publication is intended as a resource of ideas, tools, and techniques that have been Continued on page 27 "" 166 TUB CONNECTIONS,SEPTEMBER 2001 CENTER ON HUMAN POLICY Resource Review: Promoting a whole, including the consequences of competent, caring communities for us all." Friendships, Community social exclusion, the role of social support, They then present two case studies and ways that human services can help. illustrating how to enable a person with Connections, and Membership Following chapters address friendship, disabilities to develop such friendships and Continued from page 26 support circles, agency change, community the impact of these relationships for the building and supported living, signs of people involved. community building, and citizen advocacy. The manual would be useful for anyone In a foreword to the book, Te Ripowai who is interested in supporting a person Higgins writes, "Members of Each TITLE: From community presence to sense with disabilities to widen his or her circle of Other...exposes the dangers of power, of of place: Community experiences of adults relationships and to develop deeper isolation, of helplessness.It also challenges with developmental disabilities friendships. and gives hope for communities to take AUTHOR: Walker, P. back control from the 'professionals', to PUBLICATION INFORMATION: 1999, themselves. This book gives tried and true Journal of The Association for Persons TITLE: "A feeling of being connected": tools to help build the future." with Severe Handicaps 24(1), 23-32 Friendships between people with and without learning difficulties The places where people spend time and AUTHOR: Lutfiyya, Zana.Marie TITLE: Making friends: Developing the experiences they have in these places PUBLICATION INFORMATION: 1991, relationships between people with disabili- are critical to the development of a sense of Disability, Handicap & Society, 6(3), 233-245 ties and other members of the community place and community connections. This AUTHOR: G. Allan Roeher Institute study, based on individual experiences, Recently, programmatic attempts to PUBLICATION INFORMATION: 1990 reveals that adults with developmental encourage close ties between people with disabilities commonly spend time in places learning difficulties and typical citizens have This book explores the issues of friendship designated for people with disabilities increased.It is believed that such relation- and alienation.It looks at how the versus the general public, in-public versus ships will extend the assimilation of people presence or lack of friends and other private places, and in places characterized by with learning difficulties into society. The relationships affects individuals.It explores business transactions versus social interac- researcher presents the perspectives of four key elements of friendship, examines tions. Within the community, the research pairs of-friends about the meaning of their conditions that support the development of participants have a variety of experiences. friendships. The informants shared similar relationships, identifies key barriers that They range from a sense of vulnerability to ideas and expectations about the character- need to be overcome, and outlines practical a sense of safety, a feeling of being socially istics of friendship in general. These options that can be pursued by those anonymous or isolated to a feeling of being included its mutual, exclusive, and volun- concerned with this issue. known, from disaffiliation to identification, tary nature; the rights, obligations, and from unfamiliarity to familiarity, from a responsibilities of friends to each other; and sense of being rejected to a sense of being the positive regard or affection found TITLE:Social integration and friendship liked or accepted, and from a sense of between friends.Despite efforts on the partAUTHORS: Strully, J. L., & unwillingness/willingness to provide of service providers to support the develop- Bartholomew-Lorimer, K. accommodations. The-article concludes ment of friendship between people with PUBLICATION INFORMATION: 1988, with strategies that service providers and and without learning difficulties, the biggestIn S. M. Pueschel (Ed.), The young person others can use to increase opportunities for barriers for the individuals in this study with Down Syndrome: Transition from positive community experiences and sense were the practices of the human service adolescence to adulthood. Baltimore: Paul of place. system, which curtailed opportunities for H. Brookes. people which would have promoted the development and maintenance of friend- In the first part of this chapter, Strully and Preparation of this article was supported in ships. Bartholomew-Lorimer neatly summarize part by the National Resource Center on the experiences of many people with Supported Living and Choice, Center on disabilities at the hands of the human Human Policy, School of Education, TITLE: Members of each other:Building service system. By receiving services, Syracuse University, through the U.S. community in company with people with individuals are turned into clients and Department of Education, Office of Special developmental disabilities become viewed primarily in terms of their Education and Rehabilitative Services, AUTHORS: O'Brien, John, & Lyle O'Brien, particular disability. They are surrounded National Institute on Disability and Connie by programs and staff, and are cut off from Rehabilitation Research (NIDRR), through PUBLICATION INFORMATION: 1996, typical people, places and events. One Contract No. H133A990001. Members of Inclusion Press, 24 Thome Cresc., result of this is that people in the commu- the Center are encouraged to express their opinions; however, these do not necessarily Toronto, ON M6H 2S5, Canada nity come to believe that segregation is an represent the official position of NIDRR appropriate response to people with and no endorsement should be inferred. This monograph addresses many issues anddisabilities. The Center on Human Policy subcontracts offers many stories and examples related to with TASH for space in this newsletter. building community together with people The authors propose that freely-given with disabilities. The first chapter addresses friendships between typical and disabled issues related to community membership as people "...are at the root of developing a4+ PAGE 27 16 9 TAUCONNECMINS,SEPTEIIIE12001 TASH NEWSLETTER Policy Statement Priscilla Newton, Editor It is TASHI mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise edi- Doug Biklen, Chair, Executive CommitteeMing-Gon John Lian torial judgement in selection of materials. Tia Nelis All contributors and advertisers are asked to abide by the TASH policy on the Barbara Ransom, Secretary use of people-first language that emphasizes the humanity of people with dis- Jorge Pineda, Treasurer Liz Obermayer abilities. Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director Marcie Roth individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Patrick Schwarz Terms such as "people with mental retardation," "children with autism," and "in- Linda Bambara, Ex-Officio Richard Sobsey dividuals who have disabilities" should be used. The appearance of an advertise- Wanda Blanchett Jacqueline Thousand ment for a product or service does not imply TASH endorsement.For a Lucille Zeph copy of TASH's publishing and advertising policy, please call 410 -828- Kathleen Boundy, Ex-Officio 8274, ext. 102. June Downing Name: Address: City/State/Zip. 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VOLUME 27 ISSUE NUMBER 10 OCTOBER 2001 Equity, Quality and Social Justice for People with Disabilities Inside-This Issue D?bwid In Memoriam: Stan Herr Relationships, Love and Marriage for People with Developmental Disabilities Building Foundations for Friendships Personal Relationships Between People With and Without Disabilities r t . ..., 'q 44;1. - :' ""' 17:" 5 145,-,', -:`=.': - r ,_x-`;gi - , 4 ,Ve § ^ " 2. 1 , --dit5,1 5 .0-1 -1 s' sad*, Friandsaips t- and Commsolity 0001119Ci10M$ Vt BEST COPYAVAILABLE OCTOBER 2001 TABLE OF CONTENTS From the Executive Director Page 4 "Fully Funding" the IDEA Page 7 Relationships, Love and Marriage for The Professionals' Choice People with Disabilities Page 10 Model Behavior: Sex and Stages Learning Materials Disabilities Page 13 is the education industry's Celebrating Gunnar Dybwad Page 16 Attitudinal Barriers to heading producer of attractive, high-quality Friendships Page 21 Friendship is a Two-Way Street Page 23 photognephic flash carets In Memoriam: Stan Herr Page 24 designed to teach basic Personal Relationships between People language skills to both .4 with and without Disabilities Page 25 viode children and adults with erazb- autim speech and language deters. ?le` developmental cesawkwi or brain injuries. Available Card Sets: Language Budder Pkg.,* Now Cards TASH (formerly The Association for 350 cards from 9 different categories, including animals. vehicles. foods, clothing, furniture, toys, everyday obiects, shapes and colors. Features cards to teach Persons with Severe Handicaps) is an identical and similar matching, as well as receptive and expressive labeling. international advocacy association of Language Budder OcempatiestCoeds 116 Cards featunng nu* and female depictions of common occupations. people with disabilities, their family Ideal for labeling. as well as descriptive and imaginative exercises. members, other advocates and people The most current and mobs:lc adds on the market who work in the disability field. Wait owe webs**mwww.stageslearning.com TASH actively promotes the full in- or esti888-501-8880 mono asorder or receive free color beethere. clusion and participation of persons with disabilities in all aspects of life. To receive an information packet, con- tact: TASH, 29 W. Susquehanna Av- enue, Suite 210, Baltimore, 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) OTI1Sil 828- TASH, Ext. 103, e-mail:[email protected] Stretching the boundaries of what is possibl For questions about the 2001 Annual TASH Conference, call: Kelly Nelson, Conference Coordinator, at (410) 828-TASH, Ext. 105, [email protected] Building communities in which no one is segregated For questions about membership, conference registration or exhibiting, call: and evetwine belong% Rose Holsey, Director of Operations and Member Services, (410) 828-TASH, Ext. 100 or [email protected] Forging new alliances that embrace diwrsinl For information on governmental affairs, call: Jamie Ruppmann, Director Advocating for opportunities and rights; of Governmental Relations, at (410) 828-TASH, Ext. 104, e-mail: [email protected] Eradiating injustices and inequitie For information on newsletter submissions and advertising, marketing and promotions, or permission to reprint, call: Priscilla Newton, Director of Supporting research and disseminatirg Marketing, at (410) 828-TASH, Ext. 102, e-mail:[email protected] Icnowleclge and information; For information on the Journal (JASH), call: Linda Bambara, Editor-in-Chief, at (610) 758-3271, e-mail: [email protected] Promoting indusive education; Don't forget to visit TASH's web site at http://www.tash.org Supporting progressive legislation and litigation: and, TASH Connections is available on audiocassette, in large print, and in Braille fir people whose disabilities maw these alternative formats preferable. Call (410) 828-8274 ext. 102 to request an alternative format.Requests for permission to reprint material Promoting exellence in services. appearing in TASH Connections should be sent to: TASH Connections, 29 W Susquehanna Avenue, Suite 210. Baltimore, Mil 21204, Ann: Connections Editor. Permissionrequests can also be faxed to (410) 828-6706 or sent via e-mail to: pnewton@tashorg. 1 72 PAGE 2 TASHCONNECTIONS,OCTOBER 2001 OCTOBER 2001 The Foundations of Inclusive Education: A Compendium of Articleson Effective Strategies to Achieve Inclusive Education Edited by Douglas Fisher and Diane Ryndak Foreword by Steve Taylor Consistent with the spirit of TASH, this book of readings from JASH includes some of the most important articles about inclusive education that have been published in recent years. The compendium includes the following subject areas: From Least Restrictive Environment to Inclusion: Conceptual Underpinnings and Overridding Issues Perceptions of Inclusion and Attitudes Towards Students with Disabilities :From Facilitation of Social Interactions to Belongingness: A Change of Focus Strategies That Facilitate Inclusion "These JASH articles have helped shape my world view about the nature and nuance of inclusion; they illustrate important dimensions in the dynamic evolution of L RE policy." Anne Smith, U.S. Department of Education "The authors represented in this new resource are the most qualified specialists researching and applying strategies for inclusive education today." Norris Haring, University of Washington `A book rich with the basic concepts, supportive research, and change strategies critical to establishing inclusive schools." Martha Snell, University of Virginia "The Foundations of Inclusive Education explains not only the rationale, but also the practicalities of creating and maintain- ing inclusion." Douglas Biklen, Syracuse University "Finally, a collection of seminal readings university instructors can use to provide both contemporary and historical readings for any number of classes in special education!" Jacqueline Thousand, California State University, San Marcos This textbook is a mustfor all who are struggling with the complexities of inclusive education. Placeyour order now for the next semester! 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Susquehanna Avenue, Suite 210, Baltimore, Maryland 21204, USA PAGE313 TASH CONNECTIONS, OCTOBER 2001 FROM THE EXECUTIVE DIRECTOR when people are inherently connected Newsday reported, "Smoke already within their communities, the quality of filled the stairwell when they started their life is enhanced. The events of down. The smell of jet fuel choked then: September 11th have reminded us that as they hoisted the chair down a few steps not only do strong relationships result in at a time. Carrying the chair was awk- better lives. they may well improve ward and the men struggled to find a people's very chances of survival. rhythm and synchronize their steps. They told jokes, their nervous laughter break- Many of us have heard the story of the ing the silence. Every few flights they man who used a wheelchair and was would switch positions. They had to stop carried down sixty-eight flights of stairs often to allow others to pass as workers by his co-workers. In 1993, when the rushed by to get out of the building". From the Executive Director World Trade Center was bombed the first Bitwinski said later, "I just thought, we BY NANCY WEISS time, John Abruzzo was among the last to need to keep going.down and get out. \Ve get out. Back then, it took six hours for had no idea the building would come Together, We Can Triumph co-workers to carry him and his 150 down". Near the 20th floor a rumble pound power chair down 69 flights of shook the building and the lights in the Over Tragedy stairs. In the aftermath of that event. stairwell went out. The other World Abruzzo's employer purchased a light- Trade Tower had collapsed. Abruzzo. We have all indelibly been weight, sleigh-like evacuation wheel- Bitwinski and their co-workers kept at it. changed by the tragic events chair. On September 11th Abruzzo. and They got out just moments before Tower of September 11th. All of us, the co-workers who wouldn't think of One collapsed as well.' all Americans and citizens of the world, abandoning him, made the same journey have had our sense of safety pulled out in a life-savirig hour and a half. This story is remarkable, as the events of _from under us. Some things that we September 11th were all remarkable, but _ thought we knew, we no longer know. the sense of community Abruzzoand his Other things are even clearer than they co-workers demonstrated is not remark- were before. One thing that has been With careful consideration able in the disability community. We reinforced by these events is the impor- and respect, the 2001 TASH long ago realized the importance of tanc-e of community. The events of Conference will be held as community. Don Forrest, a member of September 11th have had impact on the planned in November. Syracuse University's Center for Human disability community in many of the While TASH knows that Policy's Community Inclusion list serve same ways that they affected people who the recent tragic events have said the following in a recent communi- do not have disabilities but there have had a profound impact on cation with that group: also been some implications of these all Americans and our events that have been particular to the neighbors worldwide, we "As I was getting dressed this morning. I disability community. believe that an event of this saw my Center for Human Policy button nature must serve as a with the inscription "Build Community- Some of the ways in which the tragedies uniting force for our on it. -What that has always meant to me of September 11th have affected the community. is that I have a responsibility to get to disability community are obvious; others know my neighbors and connect with are less so. Most of the stories that have them as part of our local community. I emerged from the tragedies have been have done this in nearly every place I horrific; some speak to the amazing spirit When the plane hit One World Trade have lived, and it has always been a good of mankind. There were people who Center almost everyone ran for the investment of my time. It has made me survived the World Trade Center stairwell. John Abruzzo, a wheelchair feel-safe, once I've gotten to know and bombings who spoke of seeing people in user didn't run. Peter Bitwinski, a close trust my neighbors. It has made available wheelchairs waiting in the hallways friend and co-worker of Abruzzo's didn't to me resources that would have other- while others rushed by them. As a run either. He began looking for the wise been unavailable. It has reinforced society we have overlooked the survival evacuation chair, described as a blue and in me a real sense that no one can go it needs of people with disabilities when yellow cradle on skis. He found it behind alone in this world, at least without the elevators do not function. We have only a stack of boxes. Eight other people held expectation of a somewhat depleted begun to know how many survivors of back and waited as others all around human experience of life. Knowing and the tragedies have survived with perma- them ran for safety. Together they caring about my neighbors has been, and nent disabilities. What we as TASH transferred Abruzzo to the evacuation members have known all along is that chair. 1i! Conunue.i on page 4 PAGE 4 TASH CONNECTIONS, OCTOBER 2001 FROM THE EXECUTIVE DIRECTOR Together, We Can Triumph dense hedges. This allowed each home- ment to strong communities. We have Over Tragedy owner great privacy. Then came the Nazi been touched by the world's outpouring Continued from page 3 occupation and Paul became a heroic of compassion around these tragic underground fighter. events. Later, he told me something interesting This kind of uniting force is exactly the continues to be, a real gift both from me about those hedges!`During the occupa- fortitude upon which TASH was built, and to me in my daily life. tion, everybody cut openings in them, and upon which our work together enabling people to move quickly and continues. Undoubtedly, our lives are I know that most of us have spent quite quietly from house to house to share forever changed. It is up to each ofus to some time thinking about ways to include vital news and food and look out for one move forward, in support of each other, folks with disabilities in our communi- another. Also, members of the under- and to work toward emphasizing the ties. We have even sloganized it: 'Build ground could flee through routes of hedgevalue of life and the value of our inter- Community.' It seems to me that in these openings without being seen from Nazi connectedness as a community. most difficult times, building community patrolled streets. These cherished is just what the doctor ordered. Perhaps openings between the houses drew With careful consideration and respect, out of this tragic series of events, we may neighbors together." the 2001 TASH Conference will be held find that there is a real opportunity to put as planned in November. While TASH into practice, on a much broader scale, Bob then told me a sad thing that Paul knows that the recent tragic events have those beliefs that we hold in common. had shared with him. After the Nazis had a profound impact on all Americans I'm hoping we work at that like never were defeated and Holland returned to and our neighbors worldwide, we believe before. And I'm hoping that in so doing being a safe and secure country, all of the that an event of this nature must serve as we can convert some of the fear and hedges grew together again. a uniting force for our community. May anger we are all now feeling into some- we stand together in strength and thing that is really positive, and some- Bob drew the connection between the decency, against all threats to our mutual thing that ultimately benefits everyone." events of sixty years ago and the circum- safety and freedom. stances we face today. Bob said, "We are A few days after September 11th, I once again in an all-out war. Our In November, over 2000 TASH mem- communicated with Bob Perske, one of lifestyles will be changed. Issues once bers and friends will gather in Anaheim TASH's most beloved members, and a receiving great emphasis will diminish. to celebrate the accomplishments and the national treasure in the tireless defense of Other issues will rise up and take their future of people with disabilities. the rights of people with disabilities. Bobplaces. Government funding streams will and I talked about his early work in be redirected. I am old enough to Join us in solidarity. helping communities to be aware of the remember our last all-out war and such value of diversity. His book New Life wars are not kind to persons with in the Neighborhood, was built on the disabilities." Bob suggested that the The following web sites provide informa- following premise: not only is it good and terrorist attacks of last month may be a tion on disaster preparedness for people important for people with disabilities to national call to once again, "open up the with disabilities: live in and amongst their non-disabled hedges" that separate us from our neighbors, it is good and important for neighbors. http://www.redcross.org/services/ everyone. Schools and neighborhoods disaster/beprepared/disability.pdf grow stronger and prosper; not, as some Many people have asked whether TASH might imagine, despite their differences, still is planning to hold our conference in http://www.ican.com/channels/ but instead, as a direct result of their Anaheim this November. TASH joins all independence/home/safety.cfm diversity. of you, our fellow Americans and citizens around the world, in expressing http://www.ci.houston.tx.us/ Bob said that one of his first glimpses of outrage and sorrow over the events of OEM/spineeds/ such healthy neighborly activity came Sept. 11th. Our thoughts, prayers, and from Dr. Paul Pruyser, a psychologist at support go out to each and every victim, http://www.nod.org The National the Menninger Foundation where Bob survivor, and rescue worker, as well as Organization on Disability's web site once worked. Bob said, their families and loved ones who have provides a number of valuable links for been impacted directly by the events of information disaster preparedness. "Paul grew up in Holland, in a residential this truly tragic day; a day that will section in which all the houses were set remain in our minds forever. TASH is back on their lots and separated by long, built on determination and a commit- ' Newsday. September 22, 2001. C§ PAGE 5 1 '7 5 TASH CONNECTIONS, OCTOBER 2001 GOVERNMENTAL AFFAIRS with TASH to investigate this issue with an the new money as "local funds immedi- eye towards using the data to identify ately."Further, where a local school district personnel preparation and school environ- can "show that it is meeting the require- ment issues that may be contributing to the ments of this part," [that is, Part B of the problem. IDEA] then the local school district may "petition the state to waive, in whole or Dr. Pasternack has been invited to attend part, the 55% cap under this clause." Simpiy the 2001 TASH Conference in Anaheim put, your local school district could be next month. Barring unforeseen scheduling allowed to treat ALL the new funding as conflicts, he will address the full conference "local funds." It is likely that those "local and then will be available for a "give and funds" would be used for public schools. 4,41cP01,11 take" session on Saturday. They might even be used to provide special education services.But, under this amendment there will be no requirement _Pepe° that the IDEA funds be used for special education. Many advocacy organizations. including TASH, can't support the notion WHAT'S THE PROBLEM WITH that over the next ten years, local communi- mEETS WITH ties will receive vast sums of "special "FULLY FUNDING" SPECIAL education funding" (close to $9 billion in ASSISTANT SECRETARY OF EDUCATION? 2002 up to a whopping $23 billion in 2011) EDUCATION that are not dedicated to special education A majority of the members of Congress as services and supports. Donna Gilles. Nancy Weiss and well as a united educational establishment Jamie Ruppmann met with Dr. Robertare calling for the "full funding" of special It is also discouraging to realize that school (Bob) Pasternack the first week of October. education this year. For TASH members lobbyists are characterizing this new The 90-minute meeting allowed time to and for parents and teachers across the funding as a "repayment" that they-are cover several important topics with the country, the prospect of significant increases entitled to because they have provided newly-appointed Assistant Secretary of in federal dollars that "flow through" state special education to youngsters with Special Education and Rehabilitative departments of education to local school disabilities in their communities for the past Services. Dr. Pasternack came to the -U.S. districts are something to welcome and twenty-five years. Department of Education from New support. Mexico, where he was Director of Special It is true that over the years local school Education. His past experience includes Senators Chuck Hagel and Tom Harkins districts have contributed as much as 80% work with children who have deaf- introduced a "full funding" amendment to of the cost of special education. without blindness and youth with emotional the Elementary and Secondary Education much assistance from the state legislatures disabilities. Dr. Pasternack has an older Act several months ago that has been the or the Federal government on a year-by- brother who has a developmental disability. focus of petition drives and print ads in year basis. It may be reasonable for Con- major newspapers (paid for by a coalition gress to permit local school districts to take The meeting provided an opportunity to led by the National Education Association). a portion of the increased funding for share the continuing concerns TASH has One large suburban school district in IDEA to supplement their general educa- had about the preparation of teachers and Virginia even hired a lobbyist whose job is tion funds. TASH, in coalition with several other educational and support persons, the passage of a full funding initiative. So other grassroots advocacy organizations, particularly as it pertains to their ability to what's the problem? Why aren't advocates met with Senators Harkins' and Hagel's provide high quality instruction in commu- urging passage of this amendment? staffs to talk over these concerns. We were nity and inclusive classrooms and schools. frank in stating our belief that when. Dr. Pastemack shares our passion for The answer is in the complicated formulas families and advocates in the states realized personnel preparation issues. and expressed and funding requirements contained in Part what-the true nature of the "full funding'. some frustration with the continuing gap B of the Individuals with Disabilities legislation was to be, they would be betweenJesearch and practice. This gap Education Act (IDEA). Currently, local shocked and angry. We have continued to exists despite the considerable dollars spent school districts must use their "flow monitor the deliberations of the COngres- by federal and state governments, as well asthrough" dollars to supplement the state sional Conference Committee working on local school districts. and local money they receive to educate the Elementary and Secondary Education children in their communities. In this way, Act and will post developments on the The primary focus of the meeting was the the federal funds contribute to the "excess" TASH web site as more information use of restraints and aversive procedures in costs associated with providing the specially becomes available. public schools. Dr. Pasternack agreed with designed instruction and related services TASH that information about incidence of required to support students with disabili- For questions about these or any other abuse, injury or death need to be investi- ties who receive special education. concerns about state and national policy. gated and data collected that goes beyond contact Jamie Ruppmann at the routine police or social services reviews The Hagel-Harkin Amendment currently [email protected] or contact Jamie at that appear to be current practice in most under consideration in the Congress would the TASH central office at (410) 828-8274. communities. He pledged to collaborate allow local school districts to use 55% of ext. 104. PAGE 6 1 (.3 TASH CONNECTIONS, OCTOBER 2001 BEST COPYAVAILARI F ON FULLY FUNDING THE IDEA "Fully Section 504 did not provide any funds. the students with disabilities that were Funding" Brown v. Board of Education did not enrolled but not appropriately served. provide any funds. Title IX did not The bill proposed that the federal The provide any funds. The Fourteenth government would fund a percent of that IDEA? Amendment did not provide any funds. estimated total. The Americans with Disabilities Act did How not provide any funds. But schools have President Ford indicated that he would About to comply with the Constitution and with veto any new bill that came out of Fully those Acts. Congress with a call for increasing spending. So Senator Dole brokered a Complying With the Senator Trent Lott, introducing the compromise that in the first years the IDEA current version of the IDEA for a final federal share would be about ten percent vote. May 14, 1997, reminded us: "The BY REED MARTIN and then, if the country could get past the obligation to provide children with ruinous inflation it was in, the Congress disabilities a free and appropriate would consider raising the percentage of education is grounded in the Fourteenth For 26 years we have heard argu- federal funding. Amendment to the Constitution, Title V ments about "fully funding" the of the Rehabilitation Act (Section 504), IDEA. What does that mean? And So what is "full" funding? Is it reaching the Americans with Disabilities Act, and where do the arguments come from? The the percentage of federal funding which by the laws of every State. IDEA is one arguments began when it dawned on was originally considered? That was far additional civil rights tool that guarantees school districts in the early '70s that below 100%. So what is "full" funding? children with disabilities the right to Section 504 had been passed and school Is it reaching the original funding level in receive a quality education." districts were going to have to provide an terms of dollars? That has been far, far appropriate education to all students with exceeded already in terms of the billions So is the argument about "fully funding" disabilities. This meant that 1.25 million that go into our public schools under the the IDEA an argument that schools are children with disabilities that schools had IDEA. Or is "full funding" a slogan that only obligated to obey our civil rights refused even to enroll, were going to be was created by school districts as an laws if (1) funds are created to induce enrolled. It also meant that 1.75 million excuse not to comply with the rights of public schools to obey the law; and (2) students with disabilities who were students with disabilities? This writer the funds are adequate enough to interest enrolled in school but, in the words of heard the argument over "full funding of the schools in coming into compliance Chief Justice Rehnquist, "were left to the IDEA" again and again and again with the laws? Schools must fully comply fend for themselves in classrooms from school boards-, and teacher unions, with Title IX, and Section 504 and the designed for their non-handicapped and special education directors and ADA, and the Constitution with no peers," were going to have to be provided administrators. We did not hear it from federal funding. an appropriate education. parents or from parent advocates. They were arguing for compliance with the law, When the IDEA was first put into debate This was a civil rights issue. The federal no matter what the funding level. in the Senate in 1975 (then called the courts had decided 36 cases in 27 states Education for All Handicapped Children that outlined what was required to meet But state education agencies and school Act), there was an attempt to estimate the the civil rights of students with disabili- district boards were using less than "full total cost of providing an education to the ties. It was becoming clear that the civil funding" to argue against compliance. students with disabilities that schools had rights of disabled students were right up The argument was put most succinctly to refused to enroll, and the costs of serving there with black students, as recognized this writetby the state director of a major state in Brown v. Board of Education, and with "the "fedsz' are only funding 10% female students, as recognized in Title so we will put only 10% into our effort to comply." That state director of special- IX: These federal court cases, and The argument for fully finding Section 504, were based on the Four- education testified to his state legislature the federal effort is used by that no additional funds were needed teenth Amendment to the U.S. Constitu- many school boards and districts tion. When Congress recognized in 1990 because their state was in total compli- to limit, not to expand, the ance with the requirements of the IDEA 17 years after Section 504 had been opportunities for students with passed that our nation's schools were already. Then he would fly to Washing- disabilities. They are telling ton, D.C, on many trips, where he still not meeting the Constitutional rights parents, "your child's rights go of students with disabilities, the Ameri- testified to Congress that the IDEA only as far as the federal finding would bankrupt his state and that the cans with Disabilities Act was passed. can be stretched to meet their needs." Continued on page 8 PAGE 7 TASH CONNECTIONS, OCTOBER 2001 ON FULLY FUNDING THE IDEA "Fully Funding" The IDEA? decade because their monitoring showed How About Fully Complyingsuch waste and misuse of funds being In other words, the argument for fully With the IDEA received. In one state, this writer asked funding the federal effort is used by many for information about the amount of school boards and districts to limit, not to Continued from page 7 IDEA funds that were "misused" the expand, the opportunities for students previous year and thus ordered to be with special needs. They are telling returned to the treasury. The answer was parents "your child's rights go only as far federal government must put billions into in the millions. This writer then asked foras the federal funding can be stretched to his state before it could comply. When the amount that had not been obligated meet their needs." this writer published that testimony side during the fiscal year, and thus would by side in a newsletter it caused a bit of a have to be returned. (These funds are not The federal laws require the opposite. stir. That kind of politically motivated actually returned; they are deducted from These children with special needs are our lying characterized the initial arguments the next year's amount). That non- children. They have rights equal to any over "fully funding the IDEA." And the other student in the entire school district. arguments came exclusively from the They are not federal students, to be put administrative side. into federal programs, and to be funded The key is not "fully funding" -- to the limit of the federal contribution. Now, the coalition includes parents and whatever that means and whatever Our children have an equal claim on we still wonder what "full funding" the amount is. The key is the every dollar whether federal, state or means and what obligations schools are recognition that these students are local that is available to every other recognized to have until "full funding" is not "special education students." student. achieved. The reason parents are talked These students are our students, and into joining such a coalition is that school they have special needs. They have a The notion that "full funding" is what is personnel keep lying to them "we right to local funds and a right to required before a school district "fully could do what your child needs if only state funds to meet those special complies" is what leads school personnel we had more money." Then the school needs. to say "we are out of federal evaluation personnel divert the parent advocacy dollars for this year;" "we don't have efforts away from compliance and into enough federal funds for a program in fund raising for the school. We saw a your neighborhood school, so you will newspaper article last year in which a obligated amount was also in the millions have to go across town to the one we pay student was failing badly in school for for that year. So with funding at that for with federal dollars;" "we only have lack of a piece of assistive technology level, we had millions in misuse and enough federal funds for one bus, so all that any honest IEP would have included. millions not used. We wonder what "full the students in that building will have to The school convinced the parent to do funding" would bring. leave earlier than the other students;" extensive private fund raising in the "we do not have enough federal funds to community to purchase the equipment. The funding under the IDEA was also afford an aide for that one student;" "we When that was successfully done, the recognized from the beginning as being don't have enough federal dollars left in parent gratefully thanked everyone required to "supplement" state and local the budget to afford a piece of assistive because her child could now have a funds, not "supplant" them. In other technology that would allow that student chance at an appropriate education. The words, the federal dollars were to add to to be in regular classes;" and "we cannot school never accepted the responsibility the state and local effort to meet the needs allow an aide to help your child toilet for getting this equipment. of students with disabilities. Yet, moni- herself until we get clearance to use toring reports have consistently shown federal funds for it." The last example There has been a massive amount of that schools use local dollars for purposes was one this writer took all the way to the funding up to now, since 1977. Your state that they prefer (for example astro-turfing U.S. Supreme Court and won 9-0, with education agency and your local educa- the high school football field), often the school district paying their attorney tion agency have pledged, in sworn limiting the funding of special education $562,000 to fight this. Is that a problem affidavits sent to the federal government, needs to the available federal special caused by "lack of funding" or a problem that they are in full compliance with the education dollars. That is a clear viola- of a lack of commitment to our children? law, and that they are therefore eligible to tion of the law and a clear violation of the receive the federal funding. If they are in rights of students with special needs, but The Americans with Disabilities Act, full compliance now, why the need for it can be traced to the attitudes of some Title III, applies to private schools. any increase in funding? Are they lying school personnel that "federal funds have (Title III of the ADA requires places of about being in full compliance? The to fund the federal special education public accommodation, like schools, to federal government backed off of requirements and we will only go as far monitoring the states closely in the past as the federal funds go." Continued on page 9 1 73 PAGE 8 TAUCONNECTIONS,OCTOBER 2081 ON FULLY FUNDINGTHE IDEA "Fully Funding" The IDEA? How About Fully Comply- Reed Martin is a friend to our children and an attorney with 33 ing With the IDEA years experience in special education Continued from page 8 law. He can be reached by e-mail at [email protected] or visit his website at http:/ / be accessible to people with disabilities.) www.reedmartin.com No federal dollars are involved, but full compliance is required. Is there a call to "fully fund" Title III? No, but there is a call to fully comply with Title III and this writer has certainly litigated under Title expecting full compliance. We have had increases in federal funding for the IDEA year after year after year. Does Texas Middle-School Inclusive anyone feel that has helped us reach Education Grant Project imple- greater compliance? No. In fact, the mented by LR Consulting and National Council on Disability report funded by Texas Council for issued last year suggested that at the time Developmental Disabilities of the highest funding of the IDEA, noncompliance with the IDEA was rampant. The key is not "full funding" whatever Wanted: that means and whatever the amount is. The key is the recognition that these Lessons that enable students students are not "special education with developmental students." These students are our The deadline to disabilities to access middle students and they have special needs. pre-register for the They have a right to local funds and a school general education TASH Conference in curriculum. See web site for right to state funds to meet those special Anaheim is needs. details. November 5th! They should not have to wait until their school district and their state are satisfied with the amount of federal dollars they All registration forms are receiving before their state and local must be received in school district begin to comply with 30 Baltimore (by fax, mail years of laws. We should expect that their or electronically) by state and local districts will start comply- November 5th in order ing with the sworn statement that they to be processed as a have been sending annually to Washing- Bookmark this ton D.C. for the pail 25 years the pre-registration. sworn statement that they fully comply site and visit it with the federal laws. There is no problem often for project We are for "fully complying" with the registering on-site, but federal laws and not for giving school after November 5th, updates: districts some "lack of funding" excuse registration will be on- for treating our children as less than full site only and an on-site www.inclusivemomentum.com citizens until the school can draw down fee of $25 or $50 will enough federal dollars to make our be added. children worth their while. BEST COPY AVAILABLE PAGE 9 79I TASNcommon OCTOBER 2001 RELATIONSHIPS, LOVE AND MARRIAGE healthy sexual sexuality clinic at York Central Hospital. beings they must The clinic had been serving people with navigate a disabilities for several years. It was his minefield of goal to run his proposed test with several myths, misconcep-people with disabilities, and he wanted to tions and outright use their care providers as a control lies. Further, they group. The test was only on sexuality - need to develop a there was no information specific to strong sense of selfdisability. and personal worth to withstand the As he ran the test, he kept revising it and onslaught of making it more simple. His process of negative messages simplifying the test wasn't because of the that exist in the responses of people with disabilities. community Rather, he was having difficulty making a regarding both test that the care providers could pass! sexuality (you have to be beautiful to There is an assumption that those without be loved) and disabilities have all had adequate sex y mother told me I shouldn't disability (you areeducation, are perfectly comfortable with have kids because they'd unworthy, unattractive and unlovable). their bodies, and have healthy attitudes ome out like me. Is that Finally, they need to have developed towards masturbation and menstruation. true?" The speaker, a charming young enough assertiveness skills to demand In a word, wrong! This situation could be woman with a developmental disability, accurate information and to stand up to amusing, if it wasn't for the fact that is desperate for information. I had met disapproving others. people with disabilities often seek her during a project aimed at raising information from their care providers. public awareness of the value of the Yet, the mere fact that this woman is in a Without meaning or malice it may be work that people with disabilities do in relationship, and that she loves a man whothat the care provider may simply pass their communities. Ironically, this young loves her back, is a testament to the fact along either personal values or societal woman works as a nanny for two young that the world is changing for people with myths rather than information. "When I boys. During the day she takes care of disabilities. While she lives in fear, she want to have sex with my girlfriend, am I another woman's children. She and her also lives in love. She's half way home. Assupposed to wear a condom even if she is boyfriend desperately want children but more and more people with disabilities on the pill?" is a legitimate question. are being counseled on all sides to abstain seek out partners, we need to conceptualize"You shouldn't wear a condom because from sex thereby avoiding pregnancy. how to help a person with a disability you shouldn't have sex until you are There are tears in her eyes. achieve healthy sexuality. Accurate married," isn't a legitimate answer. information, self esteem and assertiveness, The source of those tears could be are the ways that all people grow into Care providers need to have access to threefold. First, she might simply be sexually competent individuals, so it isn't aresources that will help them answer frustrated at her inability to find some- stretch to suggest that the same is true for questions. Further, they need to learn one, anyone, to answer her questions. people with disabilities. professional boundaries. Asking someone Second, she might be grieving a child that for information is different than asking she wants but believes that she should notAccurate Information for his/her opinion. It is imperative that have. Third, she might be coming to the Years ago a young researcher attempted to care providers learn the difference realization that many people believe develop a Sexual Knowledge Test for between the two. A further complication "being like her" is such a bad thing that it people with disabilities. He approached theis that many people forget that "values" should never happen again. are "opinions," and instead mistake "values" for "facts." That people are uncomfortable with talking about sex is nothing new That The statement, "Homosexuals are people are uncomfortable with disability deviants," believe it or not, is a value, not is something not spoken about. It is not a fact. No matter how strongly one surprising then that sexuality and believes something, it doesn't make it a disability together can be a toxic mix. For people with disabilities to develop into Continued on page 11 PAGE 10 1 80 TASH CONNECTIONS OCTOBER 2001 RELATIONSHIPS, LOVE AND MARRIAGE For Whom The Bell Tolls: (Sexual Information and Education doing something seriously wrong by Relationships, Love and Mar- Council of the United States), for young men who offered only approval riage for People with example, has perhaps the best resource and faint friendship overtures. Self list on the Internet for information advocacy may be the only way out of this Developmental Disabilities related to sexuality and a variety of quagmire. Continued from page 10 disabilities. The self advocacy movement allows Self Esteem as a Person With a people with disabilities not only opportu- fact. Training care providers to access Disability nities to meet others who have disabili- good information and to put boundaries People with developmental disabilities ties, but also to confront any internalized around their own belief structures may understand negative messages, no self-hatred of disability. Like conscious- be some of the most important training matter how subtly they are transmitted. ness raising groups formed by feminists done for those in service to people with The woman who asked the question in the sixties, self advocacy groups that disabilities. The same, however, is true about the possibility that her child may become disability aware and disability for parents. Parents need to learn that have a disability was keenly aware about proud offer stunning hope for the their child is an individual, separate from the fear that others had of her child's disability community. A couple with a them and as such, need to be able to makepossible disability. She made the easy developmental disability in New York independent decisions. Typical children "connect-the-dots" link between "we City became the first people with this will accept, or reject, your belief struc- don't want your child to have a disabil- kind of disability in the world to adopt a ture -- and you have no choice but to cope ity," "we don't value people with child. They attribute part of their success with their decision. It can be tempting to disabilities," and "we don't value you." and determination to the self advocacy ensure that a child who is more vulner- Interestingly, in talking with her for only movement and to their understanding of able to your control will follow com- a few minutes, she was more relieved to themselves as citizens with tights. The pletely the rules you set for them. get a message that it was okay to be her, self advocate movement has a long Tempting though it may be, it is a than to learn that her child wasn't likely way to go, but its promise is boundless. temptation that must be resisted. to have a disability. Astra Milberg, a woman with Down Accessing information, though, is no Others learn, through practice, that they syndrome, in her famous "Letter to a longer particularly difficult. Informative, shouldn'tassociate or have friends with baby who was thrown from a bridge," well-written books on sexuality exist for disabilities. As laudable as this idea advises young people with disabilities to those seeking general information. might have been for bringing integration feel proud, to find places where they However, when there is an identifiable into the lives of many people with belong, to join self advocacy movements, disability present, like Down syndrome disabilities, it is an idea that has a dark to expect a life full of love and relation- or Prader Willi Syndrome, there is often side. A person with a disability who first ships. Her stunning statement of self- information specific to that disability (thelearns that they shouldn't associate with worth, "God gave me an extra chromo- fertility of men with Down syndrome, "someone like that," and then learn that some, it's an odd gift but it is a gift" is an for example) that you will need to access they are "like that" can be traumatized example of what pride can do in the life to fully answer questions. Further, if emotionally and socially. Self-loathing of a person with a disability. there is a physical limitation such as often can lead to all sorts of behavior wherein accompanies cerebral palsy, there may bepeople with disabilities become vulner- Assertiveness Skills questions like, "how can I masturbate able. Recently at a parent workshop, I People with disabilities who want to when I have difficulty using my hands?" asked the parents to raise their hands if form relationships and who live within Fortunately, anyone with access to the they felt that their children could be luredsystems or families who disallow them Internet can find resources that will into unwanted sexual practices by a from becoming full adults, need to find provide pertinent information. SIECUS manipulative person who used praise as their own voice and to use it. They need the "candy" reward. Almost all parents to be able to speak clearly for what they raised their hands. Then followed a want and to stand up to the powers that discussion about how their teenaged be. Often advocates for people with children would do anything for social disabilities make the mistake of advocat- People with disabilities who want to form approval at school. ing for a person with a disability who relationships and who Bye within systems wishes to form a relationship. The mere or boles that disallow them from The hateful movie, "Something About fact that someone else is doing the becoming full adults, need to find their Mary," presented exactly this scenario at advocating communicates a lack of its beginning when a young man with a own voice and to use it. competence in the individual being developmental disability is tricked into advocated for. f Continued on page 12 ':SST COPY AVAILABLE PAGE 11181 TASN CONNECTIONS, OCTOBER 2001 RELATIONSHIPS, LOVE AND MARRIAGE For Whom The Bell Tolls: Relationships, Love and Mar- Dave Hingsburger is a world-renowned DOCTORAL STUDY IN riage for People with author speaker, and behavior specialist. SPECIAL EDUCATION He is in private practice and is a consult- AT Developmental Disabilities ant to the Sexuality Clinic at York Continued from page 11 Behaviour Management Services in Richmond Hill, Ontario, Canada. LEHIGH The individual must speak to the issue For a list of titles authored or co-authored UNIVERSITY him or her self. by Mr. Hingsburger, please visit Diverse City Press's web site at www.diverse- With one individual who asked me to The Special Education Program citycom, where you can also obtain advocate for him, I told him that if he is seeking applicants with interest ordering information for Astra Milford s couldn't stand up to his mom and tell her book, "Letter to a Baby Thrown from a in high-incidence disabilities (e.g., what he wanted, then maybe he wasn't Bridge." learning disabilities, emotional/ ready for the right to a relationship. We behavioral disabilities), or severe role played a number of ways of ap- disabilities. Unique features proaching the issue. When I went with include strong faculty mentoring him to speak to his family, he threw out and an individualized course of all of our training and said instead, (14 "Mom, do you know that I love you?" study with emphasis in applied His mother said, "Of course I know you research and teacher preparation. -love me." Then he looked at her and said Special education faculty are directly, "Then why do you think I nationally recognized researchers shouldn't be able to love someone else? and educational leaders. Is it because you think I won't have enough left for you?" That simple 4m, Attractive funding options (e.g. beginning began a profound turnaround Where monthly stipends and full tuition) in his relationship with his mother. He is are available through a variety of married now and his mother proudly Science, graduate and research assistant- supports him in his relationship. This Advocacy and wouldn't have been possible unless he did ships. The program is commit- the work himself. Values Meet ted to the recruitment of stu- dents from diverse cultural One of the tenants of feminist psychology Have you used research in furthering backgrounds. is that therapists should never do work your advocacy work? for the individual that belongs to them. For more information, see our Have advocacy agendas influenced This simple approach needs to be website at adopted by care providers and advocates your research? _ - in order for people with disabilities to We are working on a special issue of MODEL There s nothing as unimagina- BEHAVIOR tive as popular culture when it comes to sex. If any group can BY LISA break that stranglehold, it's the TARRICONE disability community. It's difficult for some of us to stare back at an airbrushed image of physical perfection, say in Playboy or muscle magazines, and not About Us Without Us, James Charlton a sex life again, she was informed that it start contemplating deeper issues of self- outlines several reasons why this trend is would probably never be satisfying and worth. We keep telling ourselves that the likely to continue: "The implication of that she would have to find someone very quality of our lives and our attractiveness the present image of the disabled "special" to understand her "condition". should have nothing to do with flawless body...leads inevitably to the notion skin and bodily virtue -- but they seem to that people with disabilities are asexual." With comments like this from supposed anyway. experts, it's no wonder that individuals Charlton claims that this is a compelling with disabilities often begin to confuse In the realm of disability, these issues are myth among non-disabled people due not rigorously defined standards of accept- even more intensely felt. They go right to only to the cultural fixation on body able body dimension, weight, and the heart of sexual self-esteem for those imagery, but to the "medicalization" of physical competence with the ability to of us struggling to maintain visibility disability, as well. Disability is fre- be sexual. This becomes a discouraging within a culture that imposes ruthless quently linked with illness and depen- and unrelenting process for those who standards for attractiveness and desirabil- dency, and this often has an oppressive don't measure up to the standard norms ity. The mandate, or so it would seem for effect upon those who are struggling for for physical acceptance. individuals with disabilities, requires a sexual equity. There is so little, and at sort of physical legitimacy in order to times, inaccurate, information available Jamie confessed to feelings of shame and obtain love and acceptance, with a certainregarding the sexual potential of people fear when confronted with the possibility sexual model as the gateway to both. with disabilities or the non-standard of sexual intimacy due to negative forms of sexuality that frequently We are overwhelmed with television, come up in the community. This is yet magazine, and billboard ads using another area in which people with conventionally beautiful bodies to sell disabilities have a lot to teach those everything from jeans to taco chips. without disabilities who define Sexual value has a certain cultural look sexuality so narrowly. Disabled author Gary:arpd that typically does not include people . and other advocates agree that with disabilities. When was the last time `Just Say No." They Tell Us everyone has the potential to be a you saw an attractive woman in a Jamie, a young woman in her late sensual being, regardless of any twenties from Port Chester, New wheelchair selling Slim-Fast, or a physical disability, and it is up to 4 Paralympic athlete posing for a Gap ad? York, is an outpatient at a local rehabilitation facility due to that individual to either choose to resist or affirm certain popular As popular culture continues to paraplegia from a recent spinal cord promoteand blithely accept images that injury. "My orthopedist told me what conceptions that attempt to OW connect sexuality to body perfection and to expect after my injury," she recalls. stigmatize disability as qS. beauty, the polarization between those "He basically told me to concentrate undesirable who have the ability to meet those on my upper body and ignore the standards and those who are unable to `wasted muscles' in my legs." When 111.fiVIP.. will deepen. In his 1998 book Not_l_glin Jamie asked her physical therapist I whether or not she would be able to have Continued on page 14 PAGE 13 183 TASH CONNECTIONS, OCTOBER 2001 SEA AND DISABILITIES MODEL BEHAVIOR certain popular conceptions that attempt Continued from page 13 to stigmatize disability as undesirable. Rosemary F. Dybwad Fellowship Consider Ellen Stohl, a person with stereotypes that she internalized regard- quadriplegia, who posed on the cover of Rosemary F. Dybwad International Fellowship ing her body. "It feels like I am not New Mobility magazine a few years backTrust, Inc. provides fellowships for international entitled to have sexual feelings anymore," under the heading "Still Seriously travel and study projects. The projects funded she admits. "Not only do I feel unattrac- Sexual." In that one cover shot. Stohl, involve a stated purpose to further the under- standing between and among nations and in the tive, but it almost seems like my body has her long legs clad in black fishnet past have ranged from comparative studies, lost the capability to respond to sexual stockings, straddled her wheelchair with research, and experiential learning to program cues." a self-possessed posture that flies in the analysis. face of negative stereotypes linking Inspired by the lessons to be gained by interna- The revised edition of the famous Kinsey sexuality and disability. "I'm a woman; Itional experiences, previous awardees have Report, released in 1998, confirms this happen to be using a wheelchair, but I'm brought their lessons learned back to their own crucial link between body image and a woman first and foremost," she told a countries and their writings, lectures, speeches, sexual self-esteem: "A positive body television interviewer in 1987. and publications have had a far-reaching impact which has shaped the field of intellectual image is an important part of self-esteem, disabilities. and having high self-esteem is vital to And what about men? Do they consider establishing intimacy with others. It is themselves men "first and foremost" in The Trust is currently seeking applications for the belief that one is valuable and the same way? "It depends," says Burt, aprojects to be funded in 2002. Individuals submitting project applications should: deserving of loving relationships." The gay male who sustained a cervical spinal same report cited the importance of cord injury over 10 years ago. "I now a) have a demonstrated track record and interest "being secure enough to risk having a look at different aspects of sexuality in the field lover find out that you are not completely I'm not solely fixated on my ability to bibe able to leverage additional resources in support of their work perfect." have an erection." He maintains that his c) have clearly identified avenues and strategies sexuality entails more of an erotic for dissemination of the Fellowship results The salvageable message in this for exploration into massage, passionate d) produce high quality written reports of their people with disabilities at odds with the kissing, and various forins of touch. experiences and study e) demonstrate to the Trustees a plan for misguided cultural connection of "There is still a way to fuel your passion achieving a broad impact from the Fellowship disability and sexlessness is in the notion and connect as a sexual and sensual of "security." "Intimacy has really less human being," says Burt. He says he Applications must address: title of the proposed to do with sexual 'function' than many encounters his share of rejection; how- travel/study project, country(ies) to be visited, travel dates, what is intended to be accomplished, people assume," says Gary Karp, an ever, he points out that finding romantic method to be followed to conduct the project, author who has a disability. He argues partners is not as difficult as he once primary contacts in the host country(ies), that the more intimate levels of sexuality thought it would be. "There are so many dissemination plan for the projects results, are driven by deep emotions, that it is people out there searching for a connec- accompanying person in travel/study project, and the amount of funds requested. The Trusts "sincere loving contact," which ulti- tion," he says. Disability or not, this is ofInternational Fellowship Application must be mately heightens security. Plus, he adds, course what it's all about. used in the submission. "Stronger feelings make for better sex." AM, Currently, Fellowships are being given out in amounts of no more that US$4,000. Applications Still Seriously Sexual Reprinted with permission of are open to anyone interested in obtaining Karp and other advocates agree that WeMedia. About the author: support for-an international travel project. everyone has the potential to be a sensual Lisa Tanicone is a writer who The Trust currently has an open application being lives in White Plains, New York period, but applications submitted by December 1, 2001 will receive priority consideration regardless She is assistant director of Alive for funding in 2002. of any To Thrive, an organization that physical provides diversity and sensitivity For more information and the International disability, training for corporations about Fellowship Application Packet, contact: and it is up people with disabilities. Com- Dr. Constance Kane, President to that ments about this article may Rosemary F. Dybwad International individual be addressed to Ms. Tarricone Fellowship Trust, Inc., 90 Carlton Street, to either via e-mail, Brookline, MA 02446 USA; Telephone: choose to PAGE 14 184. TASH CONNECTIONS, OCTOBER 2001 BEST COPY AVAILABLE OCTOBER 2001 TASH's work is dependent on the financial support ofour members and donors. We wish to acknowledge the generous assistance of the following individuals: :::::. Ellen Brant linger Sharon Lohrmann Fredda Brown Salvatore Lucarello Dorothy Carver Amanda McCrovitz Pauline Cole Anthony McCrovitz Jennifer Coots Kathy O'Connell Sandra El ling Denise Powell Donna Gilles Susie Schaefer Paula Kluth Roberta Schnorr Beth Lakretz Randy Seevers Mary Lasater Cynthia Sutton Rob LeFebvre Mai-Feng Tsuang Vickie Vining :::::. Are you looking for comprehensive : II, . . Is staff development options? II I I ©Triplicity an administrator's guide to mentoring paraeducators ©Paraeducators: LifeLines in the Classroom- six training modules for new and returning paraeducators ©Melding a training module and guide for partner teachers working with paraeducators ©Maxim a guide for linking functional-contextual assessment to instruction ©Students Firsta training module for parents as partners in the Special Education process Visit our web site or call to learn www.lrconsulting.com more about ordering materials, our PMB 747 POB 6049 training-of-trainers workshops, and Katy, TX 77491-6049 hosting a TOT in your district. PH: 281-395-4978 onsultingFax: 281-392-8379 PACE1518 5 TASH CONNECTIONS, OCTOBER 2001 REMEMBERING GUNNAR DYBWAD CELEBRATING THE LIE AIND) LEGACY (0)IF GU[NNAR. DYBWAD I Remembering a True was a very wise person who always spoke his mind. He always supported the self- Civil Rights Champion advocacy movement and helped people believe in themselves. He really heard what self-advocates are saying that they Ilearned of the death of Gunnar want in life, and he challenged the service Dybwad, as so many of us did, in an e- system to really respect what self- mail. It is remarkable to think that a man advocates were saying. He challenged who was born in 1909, when speed was them to value us and to look hard at how measured in a few miles per hour, had his they were developing services for us. He death notice and eulogies ricocheted was one of the first to say that people across the globe at the speed of light. should move out of institutions and other kinds of congregate living. He was one In the first hours and days following the of the firm believers in what we call announcement of his death many of us "community" now, but before any of the attempted to put our sorrow into writing. services we have now were in place in the What follows is a collection of e-mails community. reflecting on Gunnar, his life and his throughout this last ordeal. Yesterday, death. Some of them came to me, some We have a "little Gunnar" inside of each Gunnar was characteristically himself-- went to the family, and others were of us, no matter whether we are a self- complaining to Martha when she tried to posted on listserves as we all struggled advocate or an advisor. At the next clean up after his dinner (his appetite with the news. SABE board meeting, I want to have a never waned during his hospitalization). small memorial service for Gunnar. Bill provided humor and comfort to Befitting the scholar who was the subject Those who knew Gunnar can tell those Gunnar these last days and calmly of the messages, the first notice which who didn't know him who he was and listened to Gunnar's complaints about was replied to over and over was titled: why we are where we are today. I just the lateness of breakfast, etc. This man The last chapter. We all knew immedi- want to add that I want to keep Gunnar's who fought incessantly for the dignity ately that we had lost him. dream and vision alive in the self- and rights of people with disabilities -- advocacy movement and in the disability died with dignity, surrounded in Friends, former students and distant field. cyberspace by caring messages from admirers all had memories to share. I those who were touched by his life and have collected several hundred reflections James R. Meadours, Chair his vision for the future for people with and, with the Editor of TASH Connec- Self Advocates Becoming Empowered mental retardation. tions, I have selected a few to share with you here. Only minimal editing has been Barry Schwartz done to preserve the immediacy of the comments and the intensely personal reflections being shared by so many of us. 1 Hank Bersani am writing to say that we have had a Igreat loss today, in the self-advocacy movement and also in the disability field. Gunnar Dybwad died at 12:30 this .V morning. T was already numb by the tragic news alt on Tuesday [September 11] and now I He was one of the first professionals who Marsha Forest, Gunnar and Jack Pearpoint hear of Gunnar's passing a day we all really believed in what SABE [Self at the 1997 TASH Conference in Boston. feared would come too soon. It is Advocates Becoming Empowered] comforting to know that Gunnar's circle stands for. He was 92 years old, and he of friends and family were with him Continued on page 17 PAGE 16 186 TASH CONNECTIONS, OCTOBER 2001 BEST COPYAVAILABLE REMEMBERING GUNNAR BYBWAII CELEBRATING THE LIFE whose terms every institutional resident Iwill always remember Gunnar's sense AND LEGACY OF GUNNAR in the state is now slated for community of humor. He was the master of the set placement. I'm sure it never would have up, only to clobber you a moment later. DYBWAD happened without Gunnar. After one of his hospitalizations, I was Continued from page 16 spending a few days with Gunnar Judith Gran cooking, and helping with some writing. had the privilege of spending a few Public Interest Law Center of One night I cooked some very nice fresh Idays with Gunnar at his home a few Philadelphia vegetables, and felt like it was a rather years back, recording a small bit of his nice dish. Gunnar said "You could cook knowledge on video for a history project. at any of the finest restaurants in Bos- We recorded his interviews at the Samuel ton." I was quite self-satisfied that "The Gridley Howe Library, of which he was Old Professor" approved of my cooking. extremely proud. Apparently a few Then it came. "Yes! They never cook people were bothered by the fact that he their vegetables enough either!!!" was establishing his library on the grounds of an institution. His response: "You Another time he and I were speaking don't go to a beauty school to study auto together. I have lost track of the time. the mechanics." place and the subject. In the opening comments, I was talking about the idea of Jerry Smith a "paradigm shift," an idea I was quite ACT Doug Biklen and Gunnar fascinated by at the time. In just a few minutes, I managed to say "paradigm r'Near Families and Friends of Gunnar shift" about 5 or 6 times. Finally, Dybwad: Gunnar drew himself up in his seat, s all of you know, Gunnar was a grabbed the microphone and announced, ..staunch supporter of the self- "Are you sure there is an 'f' in that - advocacy movement. When People First We join you in celebrating one of the greatest lives ever lived. Gunnar shift ? "_ of Tennessee filed a lawsuit against Dybwad made profound contributions to Arlington Developmental Center, he Hank Bersani the culture of human being. offered to do whatever he could to help. Our biggest battleground in that case was The monuments to his being self- As 0 0 People First's motion for class certifica- multiplying increases in the quality of tion. human life will exist long after the at I think Gunnar was trying to The Parent-Guardian Association of pyramids of Pharaoh have crumbled to "sayto you [Hank] is, "Go get me a Arlington Developmental Center had dust. Big Mac or a Whopper." That you would intervened to oppose class certification go spend some time with Gunnar after We are so fortunate to have had Gunnar -and filed almost 140 declarations of one of his hospitalizations is an act of parents opposing representation of their as one of our mentors. We are so proud goodness,. kindness, and respectand I'm to have been associated with him -- and sons, daughters and wards by People sure that Gunnar knew-this, despite your with you in the struggle for a just First. The judge was sympathetic to the vegetarian persuasion. We need more society. parents and wary, if not hostile, to People acts of goodness, kindness, and respect in First. Gunnar agreed to testify (and as this worldnot fewer. Now all of us must rededicate ourselves always, he refused any payment for his work). to passionate advocacy for the principles I am wondering what Burt [Blatt] or which Gunnar symbolized. Gunnarmight be saying about the sorry With authority and dignity, Gunnar state of human affairs right now Burt vouched for us. After the hearing, the As always, we will be with you in would quote the scriptures and give us a passion and spirit. We love you. Lead judge certified the class, in one of the best moral compass, though not a map. on. decisions on class certification that has Gunnar would be his optimistic self. He ever been issued in an institutional case. would remind us that the forces against Justin and Yoshiko Dart People First went on to win consent slavery won the Civil War, that Nazism decrees in Arlington and in a subsequent was beaten back, that the people of case, People First of Tennessee v. Clover f,S fl+faS America rose up against and demanded an Bottom Developmental Center, under Continued on page 18 17 PAGE 17 TASK CONNECTIONS, OCTOBER 2001 REMEMBERING GUNNAR WAWA!' CELEBRATING THE LIFE education about human-centered design history better than him); and equally, AND LEGACY OF GUNNAR of places. seeking to document and reinforce the DYBWAD steady growth of the self-advocacy Gunnar was an extraordinary influence movement as a key force for positive Continued from page 17 in my life. I treasured his phone calls that change. often gave me challenges, and miss being able to call him to ask for advice or to We have lost a great champion: but we report an outrage or a success. I touch his keep a great inspiration. We now all have papers with love, am grateful for him, more to do to deliver on the vision. and miss him very much. David Towell Elaine Ostroff, Founding Director King's College, London Adaptive Environments Center f.S //11 0 0 didn't think things could get any worse Ithis week and now they have. (S The lengthy international struggle to Ronnie Cohn achieve full lives with and for people end to the Viet Nam War, that the Jews with intellectual impairment has lost its on this earth deserve respect and a special most consistent, energetic, inspiring and s 0 0 place in world history for their suffering, ubiquitous champion. and that we have defeated the worst Ts it a coincidence that one of the last abuses committed against people with I first met Gunnar (and also Rosemary 1humanitarians of the world, a man of disabilities in American society. What- Dybwad) a quarter of a century ago in wisdom, courage and love passes away at ever injustice or threat you brought to his London as we were building a coalition a moment where the world holds its attention, Gunnar would be confident to shape a new vision of "An Ordinary breath and seems to be shaped by terror, that we could defeat it. Life" for people with intellectual hate and intolerance? I think the legacy disabilities and their families. It is a Gunnar leaves behind is one that should These are just conversations I contem- measure of Gunnar's consistency and commit all of us, independently of our plate having with Burt or Gunnar. I ubiquity that whenever we have met origin and denomination and place of cannot speak for either of them, obvi- since -- for example, in recent years in residence, not to give up our struggle for ously. I can only write about what I Prague, Helsinki and Vancouver he understanding, equal rights and the learned from them. insisted we go for "English tea" so he respect and love for each individual could catch up with our efforts and offer human being. Steve Taylor further inspiration. As in many countries, The Center on Human Policy he had so many friends here that about Dr. Andreas KOnig once each year until very recently, World Health Organization, Geneva around the time of his birthday, a small 0 0 0 crowd of us would meet up for Sunday "brunch" in Hampstead to eat and drink Gunnar's very first words to me were of course, but also to renew our sense of on the telephone, in response to a purpose in the light of Gunnar's unique question that I asked him in 1972 about world view. ways to improve Belchertown State School. "Blow it up, darling," he told me,Indeed, it is a measure of his commit- "that's the best thing that you can do." ment that even birthday parties were not allowed to pass without a serious re- I had been advised to call "Professor minder to us of how much more there is Dybwad" who was reported to have to do in this struggle. More publicly information and opinions about Gunnar was also brave in reminding us Belchertown to get some advice. I don't continually about the extent to which remember much about the assignment, butprofessionals working in this field had the call to Gunnar was the beginning of anhistorically failed people with intellec- enduring friendship, mentorship, and tual disabilities (no one remembered this fAS PAGE 18 1;,E TASK CONNECTIONS, OCTOBER 2001 OCTOBER 2001 ATurning -Point Conference "All people have fundamental moral and constitutional rights." The Community Imperative. 1979 The Join Lis Communitj To reaffirm the fundamental values and beliefs that have inspired the disability Imperative rights movement: To develop and commit to long-term public policy goals in support of these values: To strengthen advocacy organizations, create alliances, and obtain the information and tools necessary to succeed January 25 & 26, 2002 Oakland Marriott City Center 1001 Broadway Oakland, California CONFERENCE California ...4"fo SPONSORS Center on Alliance for 'fro and Supporters. Mali C.A.I.C. National and Local 0 ley Inclusive Communities, Inc. Organizations & Individuals ADAPT. The Arc of the United States. American Association on Mental Retardation.TASH, The Research and Training Center on Community Living at the Universityof Minnesota. World Institute on Disability. National Coalition on Self-Determination,Capitol People First, Arc California. Coalition on Californians for Olmstead. Alpha ResourceCenter of Santa Barbara. California Department of Developmental Services, Allen & Shea Assocs., JimConroy, Quincy Abbot. Steven J. Taylor. The Arc Solano, Tierra del Sol. WorkTraining Programs. Inc.. Easter Seals of Southern California, PRIDE Industries, Sojourn, Inc.,Tri-Counties Regional Center, Regional Center of the East Bay. Valley Mountain Regional Center.Central Valley Regional Center, __North Bay Regional Center. San Gabriel/Pomona Regional Center. WestsideRegional Center. San Andreas Regional Center, Area Board V, Alameda CountyDevelopmental Disabilities Council, Developmental Disabilities Council of Contra Costa County. Becoming Independent. Inc., UCP of the Golden Gate To receive a full conference packet. including the registration form. contact:www.communityimperative.org Kim Olson at Alpha Resource Center. 1-877-414-6227 or [email protected] Center on Human Policy. Syracuse University. 1-800-894-0826 [email protected] PAGE 19 TUB CONNECTIONS OCTOBER 2001 9 OCTOBER 2001 Arr-v ARE YOU A UNIVERSITY TASW: The Action Starts Nero PROFESSOR? SOO While it's true that the acronym TASK doesn't TASH has a Student really stand for "The Action Starts Here," TASH Membership Program! members know that it is TASH's clarityofvision and willingness to take action that distinguishes us The program was developed through from many other groups. discussions with professors who wanted to Throughout our now 26-year history, TASH has led encourage professional identity through the way to assure that: student membership in a strong advocacy organization while assuring that their students the rights of people with disabilities are had access to enough issues of JASH for them protected; to be able to complete a variety of journal progressive research is assured the support article review and comparison exercises they and audience it deserves; and, assign. individual and legislative advocacy is available whenever needed. The package works like this: We need your help to support and sustain the critically important work that TASH has begun. Professors can either assign TASH membership Please consider a contribution or a plan for giving as one would a text book or package of that will secure the future of TASH's daily action readings, or can offer it as an option. Either toward progressive supports and inclusive lives way, if ten or more students join, they receive for all people with disabilities. a discount off the already low associate member rate. The discount amount increases Gifts may be made by check or credit card. All gifts as the number of students signing up increases. regardless of the amount -- will be greatly appreci- ated. No amount is too small. Regardless of how many students join, TASH Do also consider: provides a year's worth of back issues of the journal to all students signing up under this Contributionsofstocks or securities plan. This means your students will start the Remembering TASK through yourwillor living semester with a year's worth of cutting edge trust research on their shelf and can build their Beneficiary designationsoflife insurance or collection over the years to come. Under this pension plan proceeds plan, students receive all of the regular mem- Gifts with retained income for you or others bership benefits during the coming year in addition to an extra full year's worth of Charitable gifts are tax deductible. To discuss your journals! options for making a donation to TASH, or to ( request a copy of TASH's Charitable Giving brochure, please contact Nancy Weiss at 410 -828- An introduction to TASH is likely to be one of 8274, ext. 101. the most valued resources you can offer students as they enter the disability commu- Thank you for your assistance in securing nity in their professional capacities. To receive the rightsofall people to live and participate materials or to learn more about TASH's successfully in the community! Student Membership Program, contact Rose Holsey, 410-828-8274, ext. 100 or e-mail: "4\42 1Italk&VIA [email protected] ktitYAIOVIRtirAVE11/4: PAGE 20 10 TASK CONNECTIONS, OCTOBER 2001 ATTITUDINAL BARRIERS TO FRIENDSHIPS everyone agrees this is so impor- with disabilities, as real and seemingly tant, then why do so few kids with insurmountable barriers to forming disabilities have real friends? relationships. It is obvious that these educational practice barriers are manifes- To answer that, we have spent timetations of the prejudiced attitudes still talking to students and families, held by many people and are antithetical and observing and working in to best practices and inclusive education. schools where students with disabilities are educated in general Strategies to facilitate friendship education classrooms. As a result,Answering the question: If everyone we strongly believe that the agrees this is so important, then why do answer to this question is never so few kids with disabilities have real rooted in the student. It is a by- friends? is our goal. Acknowledging and product of the attitudinal and challenging the attitudinal and educa- educational practice barriers that tional practice barriers is essential, but it continue to exist in society and is also important that schools and schools, even in many schools thatfamilies not wait until barriers are consider themselves inclusive. overcome before they help students develop the kind of relationships they Attitude barriers hinder real progress want and deserve. Therefore, we will Attitude, educational Disguised as compassion, the stigma of attempt to provide readers with concrete practices serve as disability is often not recognized as strategies that can be used to facilitate the prejudice by the general public or even development of relationships for the barriers to friendship by many schools. When pressed, many students they know and love. teachers still do not recognize the gifts BY ZACH ROSSETTI and and talents of students with disabilities, Crucial to overcoming barriers and CAROL TASHIE or believe these students could develop developing strategies is the belief that reciprocal and satisfying relationships people are people first. Students who with their classmates. These long- have disabilities must be equally valued Advocates for inclusive education standing prejudices serve as attitude just as they are; they do not need to be typically cite friendship as a barriers that significantly impact how changed or fixed. Having a disability is a primary benefit and outcome of students with disabilities are perceived difference like any other human charac- inclusive education. When all students and treated in schools, and decrease the teristic. It is not a deficiency. It is by no are educated together. natural connec- likelihood students with disabilities will means a tragedy and does not deserve tions between students with and without be valued and sought after by their pity or benevolence or charity. Now is disabilities result. It is a rare presenta- classmates. the time to recognize and celebrate tion or article on inclusion that neglects disability rather than ignore, devalue or to include a story of students who Educational practice barriers use it as justification for a less-valued life. developed relationships as a result of When asked, students candidly report attending school together. that many of the educational practices in schools even While friendship is an enormous benefit schools that consider them- of inclusive education, there is growing selves inclusive are genuine concern among families and educators barriers to the development of Reject the notion that some that too many students who are in regular friendship between students students must leave the education classes still do not have the rich with and without disabilities. classroom in order to learn. and fulfilling social lives they desire. Students cite the continued use Object to inclusion in name Students themselves are more blunt; they of pull-outs, obvious low only by challenging the say "I don't have any friends." academic expectations, Ineffec- concepts of "inclusion tive and age-inappropriate moms," "inclusion teachers," and "inclusion students." If we believe friendship is an essential curriculum modifications, the element of a fulfilling life. and the only prevalence of "inclusion way students will be able to develop rooms," the over-use of para- friends is to be educated alongside each professionals, and the culture of other, then we must ask the question: If benevolence toward students n 1 1 a/ Continued on page 22 PAGE 21 TAU CONNECTIONS, OCTOBER 2001 ATTITUDINAL BARRIERS TO FRIENDSHIPS Attitude, educational practices serve as Build foundation for friendships: Recognize, barriers to friendship overcome attitudinal barriers Continued from page 21 By Zach Rossetti and Carol Tashie Here are some suggestions on how you can avoid and overcomesome of the barriers that make it less likely students with disabilities will have rich and fulfilling social lives: Attitudinal barriers to friendship may be manifestations of beliefs about the Prejudices. All of us are subject to society's prejudices. Think aboutyour beliefs, your capabilities and potential of people with experiences and the prejudices you have been taught about people with disabilities. Ask disabilities. But classrooms and schools yourself how you can change the assumptions and mind-sets you still have.Listen to should not mimic these beliefs in prac- people who have been segregated or devalued because of the way they look,move or tice, they should improve on them. communicate. Talk with people who are friends, parents, siblings, lovers and colleagues of people with disabilities. Learn everything you can about themany ways people communicate, get around and show us who they are and what they know The first step in facilitating true friend- ships for students with disabilities is Friendships. Friendships are much more likely to occur when all of the people ina believing that the student is someone student's life truly believe she is someone who would make a wonderful friend. When with whom others would want to be you believe the world is a better place because this student is in it, you can begin to help friends someone who would make a others see and believe the same thing. great friend. When teachers and families believe this, and communicate it to Get to know students for the gifts they have to offer.Believe that all students have others in words and deeds, then the something valuable and precious to share with you and with the people around them. promise of friendships will be more Language. Through respectful language, you can model for others that the student with easily met. disabilities is a "person first." For example, introduce a student byname first, not condition (such as "Meet Trey, who has cerebral palsy.") What do you think? Do you have ideas for how students with By talking to and with the student- in ways respectful to his age, you will show the world disabilities in inclusive settings can be that all students must have age-appropriate expectations. You can role modelyour belief more successful at forming real friend- that the student with disabilities is not deficient, but simply,moves through the world in ships? Have you already had success? If a different way. you are interested in sharing your Pull-outs.Students need to be together in order to develop respect, mutual interests experience, please contact Zach Rossetti and real friendships. For too many students with disabilities, even those who are or Carol Tashie at the e-mail addresses enrolled in general education classes, their school day still consists of pull-outs and below. separate lessons.Reject the notion that some students must leave the classroom to learn. Object to inclusion in name only by challenging the concepts of "inclusion rooms," "inclusion teachers," and "inclusion students." Zach Rossetti and Carol Tashie are Communication. All students have the ability to develop effective ways to communicate with the University of New their thoughts and knowledge. For students who do not speak or have difficulties with Hampshire's Institute of Disability. verbal communication, you can advocate for augmentative or alternativemeans of communication. They have worked with students, families, and schools on strategies to Make it clear that you will presume competence in all people, and never assumea facilitate friendships for students with student who is not able to speak is unable to understand and learn. Learn to listen to all disabilities. the ways a student communicates and recognize that some students use behavioras their only way to get their points across. If you would like to share your experiences in facilitating friendships, Tolerance. Strive for a celebration of diversity and not simply tolerance of differences. or if you have comments about this Reject the not-so-subtle message to students that "you are welcome only if you act. article, the authors may be contacted sound, look, think, talk like us," and send the message to all students that "you are welcome exactly as you are." by e-mail at PAGE 22 TASHCONNECTIONS, OCTOBER 2001 DEVELOPING FRIENDSHIPS I was asked to write this work the first time you try them-- just try Whenarticle, it was before so much again. Making real, lasting friendships happened in this country, as can be hard work, and it can also take a well as a death of one of my friends. long time. But it is certainly worth it! From both of these experiences, it has made me think and appreciate my friends even more. The reason why I am saying Friendship is this is because those kind of relationships "Hints" on How to Establish are very precicious. Friendships atwo-way One of my favorite sayings is "to be a Find someone you share friend is to have one." I try my best to live my life on the basis of that saying. something in common with What I mean is I think if I want to have a like hobbies, work, or volunteer friend, I need to be a friend to another street activities. person. I might not be able to do anything else but to listen. For most of Always remember to treat my true friends, that may be what they the person how you would like need at that time. to be treated. When I used to live in Boston, I remem- Relationships don't always ber one of my friends was having a hard mean sexual relationships, You time, and she was nervous to tell me Just a few weeks ago, I realized that I lost can get to be good friends with because she thought I wouldn't under- something that some of my friends gave people of the opposite sex. stand. She told me anyway because I was me when I left Boston. Their gift meant a her friend. It is true that I didn't quite lot to me. I was sad that I lost it. I also understand, but since I was her friend-, I Be patient. Friendships can thought my friends would be angry at me just listened to her troubles. I felt like I take a long time to make. for losing it, and it would destroy our owed her at least that much. relationship, which I couldn't bear to Sometimes, if you can, you think about. Their response was the Another example of this was when need to be brave enough to opposite. Two of my friends were sad for another friend was having a hard time, make the first "move," and ask me that I lost something that would she trusted me and another mutual friend remind me of them. I thought to myself the person if you can get to of both of ours to "cry on our shoul- that, their response was truly out of know them. This is extremely ders." We probably didn't do anything friendship rather than wanting to get hard for me and I bet for specific to make her feel better, but we something out of our friendship for others, but remember making were there to just listen. With both of themselves. friends is hard to do. these experiences and many others, it made me feel good to know that I can be Making true friends is hard work. I guess a friend just as they can be a friend to me. it is hard work because if you are truly deserving of a friend, you should work I believe that people with disabilities will for it. When I was growing up, my father Liz Obermayer _is a member of the often assume that people without disabili- had a lot of friends, and they are still TASH Executive Board of Directors. ties should be their friends, but the friends today. I thought that making and a person with a developmental person with a disability isn't willing to do lasting friendships wouldn't be an issue disability. anything on their part to help the friend- for me, but it is. Yes, it is true that people ship grow. This is wrong, and if it have always wanted to help when I continues this way, then the friendship moved from New Jersey to Boston and will eventually die. As my friend Nancy /AS two years ago to Maryland, but what has Ward, often says "friendship is a two way made those friendships last and continue street." The reason why I say that the is the hard work it takes on both parts. friendship will die is because your friend will get tired because he or she isn't I will try to write down some ways I. getting anything out of the relationship. think help in making friends. However, don't get upset if these don't seem to PAGE 23 103 TASH CONNECTIONS, OCTOBER 2001 IN MEMORIAM: STAN HERR emotional, or mental disability. Congress and the Supreme Court cited Mills as providing the legal and political roadmap UNIVERSITY OF TOLEDO for the 1975 National Education for all COLLEGE OF EDUCATION Handicapped Chidren Act (the Act that an was the predecessor to the IDEA). Wyatt v. Aderholt was an Alabama suit affirm- Tenure Track Faculty Position in ing the constitutional right to treatment Area of Special Education Severe for persons with mental illness and Disabilities retardation confined in state mental institutions. Advanced Assistant or Associate Dr. Herr's landmark legal efforts in- Level Professor (Severe Disabili- Stanley Herr helped write the Maryland State cluded helping to write the 1989 Mary- ties). Faculty member will coordi- law prohibiting executions of persons with land law that prohibits the execution of nate undergraduate and graduate mental retardation. criminals labeled as having mental degree programs in area of severe retardation. He also submitted a brief disability, with emphasis on persons that was cited by the Supreme Court in with developmental or behavioral n September 24th, the disability abolishing the death penalty for people disabilities. and legal communities lost a with mental retardation. In the early true friend and staunch advocate 1970s, Dr. Herr played a role in cases Candidates should have established of0 the rights of people with disabilities. that freed people with disabilities and an emerging record of higher mental retardation from long-term education teaching, publication, Stanley S. Herr, a University of Mary- institutional placements. conference presentations, grant land law professor who helped establish support, and professional service the federal law requiring appropriate Dr. Herr was an authority on retardation focused on persons with severe public education for children with and mental illness who wrote extensively disabilities. Earned doctorate in disabilities, has left an enduring legacy on the subject -- five books and 100 special education. Previous profes- for his lifelong commitment to equality articles on disability rights, elder rights, sional or classroom teaching for people with disabilities. children's rights and human rights topics. experience is desirable. Salary and benefits are competitive and include Through his work as a lawyer, professor, Earlier this year, Dr. Herr was awarded summer session option. and scholar, Dr. Herr's advocacy and the Paul G. Hearne Award for Disability service were instrumental in helping to Rights for his work championing the Application deadline is January 15, shape disability law, and have inspired rights of people with disabilities. Among 2002. Please send curriculum vitae commitment in other lawyers to public his many recognitions, there are two that and 3 letters of reference to: Dr. service and disability rights. His work in will ensure that Dr. Herr's legacy will William Gray, Coordinator of the seminal cases of Mills v. Board of continue. The University of Maryland Faculty Search Committee, College Education and Wyatt v. Aderholt, his School of Law has established the Stanley of Education, Snyder Memorial, public service as a law professor at the S. Herr Fund for Disability Rights and 2810 W Bancroft, Toledo, OH University of Maryland School of Law, Social Justice to allow scholars with 43606. Please contact Dr. William and his involvement with the Civil Rightsnational reputations to visit the school. McInerney via e-mail of Persons with Disabilities Seminar, The BARC (Baltimore Association of ([email protected]) workshop, and clinic have each had Retarded Citizens) created the Stanley S. or phone at (419) 530-2284 with significant impact in improving the lives Herr Award for Advocacy Leadership to specific questions re: area of severe of people with disabilities and changing honor future advocates for people with disability. the landscape of disability rights law. developmental disabilities. The University of Toledo is a state- Mills v. Board of Education was a supported, comprehensive doctoral District of Columbia suit establishing a level institution and is an equal constitutional right to a publicly sup- access, equal opportunity, affirma- ported education for all school-age tive action employer and educator. children regardless of degree of physical, PAGE 24 TASH CONNECTIONS, OCTOBER 2001 THE IMPORTANCE OF FRIENDSHIPS without disabilities get to meet each disabilities do not have continuous other. But many parents have found that relationships: they may leave their even though their child is integrated in families, be moved from one program to school, she or he has few friends who do another, and have to adjust to staff people not have disabilities. who come and go. Many individuals with disabilities live Personal relationships between people largely in a world made up of their with and without disabilities can be family, the people who support or facilitated in a number of ways. It takes provide services to them, and others in effort to help people establish connec- the programs in which they participate. tions. Described below are some of the These relationships can clearly be methods that have been utilized: significant and should be encouraged. But outside of family members, people may "Bridge-Building": Facilitators who have no freely given and chosen relation- initiate, support, and maintain new ships. relationships are called bridge-builders, as they "...build bridges and guide people Generally, many people with disabilities into new relationships, new places. and face certain disadvantages in getting to new opportunities in life." Bridge- Personal know others and forming connections: builders involve people with disabilities Relationships in existing groups or with specific Opportunity. Too many people with individuals. Between People disabilities have limited opportunities to With and Without take part in activities where they can Circles of Friends or Circles of meet their typical peers. This can be due Support: Groups of people who "meet Disabilities to physical segregation, or to the indi- on a regular basis to help a_person with a vidual not being empowered with the disability to accomplish certain personal choice of determining how or with whom visions or goals." Circle members try to he/she chooses to associate. Services open doors to new opportunities, may restrict people's chances to get including establishing new relationships. together, through program or funder Friendships between people with rules, curfews, transportation restric- and without disabilities enrich the Citizen Advocacy: Recruited and tions, and other restrictions. Whatever lives of both in many ways. supported by an independent citizen the reason, people with disabilities Everyone needs friends. Friends are advocacy office, a citizen (advocate) frequently become cut off and isolated people who support us emotionally, who voluntarily represents the interests of a from others. see things from our point of view, who person with a disability as if they were give us feedback (sometimes critical) and the advocate's own. Citizen advocates :Support. Relationships between cause us to grow. We think of our friends may take on one or several roles (e.g., people with and without disabilities are as people who choose us for ourselves, friend, ally, mentor, prOtector), and some not formed by throwing unsupported not because they have to, and who will be of these may last for life. people together. Some individuals need there for us when we are facing a crisis. assistance with fitting into certain settings With friends, we have opportunities to and activities. Others may need someone become involved in community and to facilitate their involvement or to There are different ways that school activities, to be exposed to new interpret them to others in positive ways. personal relationships between experiences, and to enjoy life more fully. Without subtle supports, people with and people with and without disabilities without disabilities might never get a may be encouraged. Perhaps more If we want the people we love to be chance to really get to know each other. important than the specific method connected to others and a part of their is the supporting, connecting role of society as adults, we must think about :Continuity. While we enjoy meeting one or more peoplefamily mem- their relationships when they are chil- new people, we are sustained by those we bers, staff members, friends who dren. Their classmates and neighbors will have known over time. The continuity of can spend time and energy for this grow into their coworkers and friends our relationships over the years is an purpose. later in life. Integrated classrooms and important source of security, comfort, recreational activities are important first and self-worth. Many people with steps: in these settings children with and Continued on page 26 BEST COPY AVAILABLEPAGE 25 .9 5 TASH CONNECTIONS OCTOBER 2001 THE IMPORTANCE OF FRIENDSHIPS Personal Relationships through their actions and how they spoke Involve and trust others. All parents feel Between People With and with each other. protective toward their children. While Without Disabilities there may be differences in how indepen- Freely Chosen and Given. Friends dent people can become, parents can Continued from page 25 choose each other. It is this voluntary come to believe that there are people in aspect of friendship that is regarded as thethe community who would, if given the amazing and wonderful part of the opportunity, enjoy and welcome a There are different ways that personal relationship. friendship with their son or daughter. relationships between people with and without disabilities may be encouraged. Private and Exclusive Nature. Within the Service providers can: Perhaps more important than the specific boundaries of each friendship is a privateReduce barriers to friendship. The way method is the supporting, connecting role relationship that is not accessible to in which support services are provided to of one or more peoplefamily members, others. The friends have a history and an people with disabilities and their families staff members, friends, etc.who can understanding of their connection to eachcan enhance or reduce the opportunities spend time and energy for this purpose. other that separates this from all of their for friendships to develop. By offering other relationships. segregated programs, the service system There are some important dimensions of dramatically lessens the chances for friendships that develop between people People can establish friendships with contact between people with and without with and without disabilities. Genuine each other, but it is not possible to create disabilities. friendships between these individuals do friendships between others. However, it exist. While each friendship is unique, is possible to create opportunities for There are also problems within inte- there are some shared ideas and expecta- people with and without disabilities to grated settings. For example, transporta- tions about what friendship means. meet and spend time with each other in tion from school often means that According to a study of pairs of friends ways that encourage friendships to take students with disabilities cannot take part (Lutfiyya, 1990), these meanings include: root and flourish. Families and service in extracurricular activities (e.g., choir, providers can do different things to make clubs, sports). When efforts are made to Mutuality. The people involved defined such opportunities available. bring people with and without disabilities their relationship as a friendship and together, the people without disabilities themselves as friends. Although they Families can: are often treated as volunteers respon- acknowledge differences between Work for the total inclusion of their son sible to the teacher or program coordina- themselves, they clearly found a sense of or daughter into the regular school tor rather than as peers. mutuality in the friendship. Mutuality system. In addition to being physically was expressed in the giving and receiving present, students with disabilities need Many other human service practices of practical assistance and emotional adequate supports for the fullest partici- present barriers to development of support, and enjoyment of each other's pation possible. Parents can also insure friendships, such as curfews, lack of company. that their child with a disability takes partcommunication with friends about a in a variety of integrated recreation and person's plans for a day, lack of privacy, Rights, Responsibilities, and Obliga- leisure activities after school hours. A and so on. Service providers can begin by tions. Once a friendship is established, it consistent physical presence in each recognizing and reducing the practices is assumed that friends can make certain others' lives is a necessary foundation forwhich curtail opportunities for people to demands on each other and be assured of friendship to occur. meet and form friendships with each a response. In these relationships, the other. They can also encourage people persons without a disability talked about Insure valued social participation. How who seem to like each other to pursue the the obligations that they had taken on vis- people with disabilities are supported possibilities. a-vis their friend with a disability, such as within integrated settings is important. teacher, mentor, or support person. The Students need to be empowered to friends with disabilities perform certain participate as much as possible, and to do Reprinted with permission of authorDr: Z2na Marie Lutfiyya is an associate professor in the responsibilities in maintaining the so in ways that other people value and relationship: keeping in touch, suggesting Department of Educational Administration at appreciate. People without disabilities the University of Manitoba, Winnipeg, possible activities, and so on. need the opportunity to meet their Manitoba, Canada. Comments about this counterparts with disabilities as peers, article, or questions about resources related :o Feelings, from Companionship to not as tutors or volunteers. personal relationships by and with people with Intimacy. All of the friends held feelings developmental disabilities may be directed so Dr:'I: of affection for each other, expressed Lutfiyya via e-mail at [email protected] 1 0 6 PAGE 26 TAN CONNECTIONS, OCTOBER 2001 OCTOBER 2001 Lessons for Understanding . P.1 I The Institute on Community Integration (UCE) ExpressYoursetirFor a catalog of our 270+ publications, call 612/624-4512 or visit our Website at http://ici.umn.edu. UNIVERSITY OF MINNESOTA MCEO FRAMENVOlUt FOS O IP EDUCATIONAL accouscaupure Differentiated Teaching & Learning II in Heterogeneous Gass/awns INMAN AA Drib, As AND of NI INAINA SUNNI DisabordINS -- I mob= I own - 1. BEST COPY AVAILABLE 7 PAGE 27 TASH CONNECTIONS, OCTOBER 2001 USN NEWSLETTER Priscilla Newton, Editor Policy Statement It is TASH's mission to eliminate physical and social obstacles that prevent equity, Executive Board diversity and quality of life for children and adults with disabilities. Donna Gilles, President Kathleen Gee Items in this Newsletter do not necessarily reflect attitudes held by individual Jacki Anderson, Vice President Elisabeth Healey, Ex-Officio members or the Association as a whole. TASH reserves the right to exercise Doug Biklen, Chair, Executive Committee Ming-Gon John Lian editorial judgement in selection of materials. Barbara Ransom, Secretary Tia Nelis All contributors and advenisers are asked to abide by the TASH policy on the Liz Obermayer use of people-first language that emphasizes the humanity of peoplewith disabili- Jorge Pineda, Treasurer Marcie Roth ties.Terms such as "the mentally retarded," "autistic children," and "disabled Nancy Weiss, Executive Director individuals" refer to characteristics of individuals, not to individuals themselves. Mike Auberger, Ex-Officio Patrick Schwarz Terms such as "people with mental retardation," "children with autism," and Linda Bambara, Ex-Officio Richard Sobsey "individuals who have disabilities" should be used. The appearance of an adver- Wanda Blanchett Jacqueline Thousand tisement for a product or service does not imply'TASH endorsement. For a copy Kathleen Boundy, Ex-Officio Lucille Zeph of TASH's publishing and advertising policy, please call 410-828-8274, ext. 102. June Downing MEMBERSHIP' INFORMATION r Name: Address: City/State/Zip: Telephone: ( ) Fax: ( ) E-mail: Isthe above your0 work address CD homeaddress 0 other Please Check Appropriate Categories () Educator/Teacher (K-12) () Related Services Provider (not more than three): ) Government Personnel () Self-Advocate/Person w/ Disability ( ) Administrator/Adult Services () Legal Services Provider () Social Worker ( ) Administrator/Education () Occupational/Physical Therapist () Speech/Language Pathologist ( ) Administrator/Other () Parent/Family Member () Special Education Teacher () Special Education/Support Specialist () Adult Service Provider/Staff () Personal Assistant () Advocate/Friend () Professional/Public Policy Advocate () Staff Development/Trainer ) isel,avit.)ral Specialist () Professor/Instructor-College/University () Student ) Lase ivianager () Psychologist () Supported Employme,, () Early Childhood Services () Regular Education Teacher/Administrator () Other Moving? Please notify TASH of your new address. General Membership (individual) $103*. () Mastercard() Visa() Discover Organization/Subscription (all organizations, schools, libraries, Card Number Expiration Date universities, etc. must use this category) $230*. Associate Membership (for people having an annual household Signature income of $25,000 or less, and for whom payment of the full ()I would like to spread my payments out.Enclose 1/3 and you will fee would present a financial hardship) $60*. receive 2 additional invoices at monthly intervals. Lifetime Member $1300. Add $10 for postage costs for members in Canada and $25 for members outside the U.S. and Canada. Please make check payable to: TASH Group Discount Rate (When three or more individuals from the same Address: 29 W Susquehanna Avenue, Suite 210 organization join as International/Chapter or International Only Baltimore, MD 21204 members at the same time -- Save $20 per membership!) Telephone:410/828-8274 Fax: 410/828-6706 Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank. Add a $20 processing fee if check is not drawn on a U.S. bank. *These prices are for both International and Chapter memberships.For If you would like to charge your membership, please fill in the necessary International-Only or Chapter-Only rates, please call us at 1- 800 -482- information in the next column. For a list of membership benefits, please 8274. call 410-828-8274, ext. 107. L OTI1S1.1 NON-PROFIT ORG. U.S. POSTAGE 29 West Susquehanna Avenue paid Suite 210 HAGERSTOWN, MD Baltimore, MD 21204 PERMIT# 187 Phone: 410/828-8274 FAX: 410/828-6706 TDD: 410/828-1306 Web site: www.tash.org Address Service Requested BEST COPY AVAILABLE OCTOBER 2001 PRINTED IN THE U.S.A VOLUME 27 ISSUE NUMBER 11/12 NOVEMBER/DECEMBER 2001 Equity, Quality and Social Justice for People with Disabilities Inside T ss Updated TASH Mission Statement Literacy Opportunities for Young Children with Developmental Disabilities Early Childhood Intervention Personnel Preparation inclusive Childcare Settings TASH Resolution Opposing the Execution of Persons Labeled as Having Mental Retardation BEST COPY AVAILABLE :.1.99 NOVEMBER/DEGEMBH1 2001 TABLE OF CONTENTS Governmental Affairs Page 3 ITALY From the TASH Executive Board Page 4 SEMINAR TASH Mission Statement Page 6 New and Returning TASH Executive Board Members Page 7 EDUCATION IN ITALY: Literacy Opportunities for Young Children AN INCLUSIVE APPROACH with Developmental Disabilities Page 8 The Community Imperative Conference Page 12 May 14 - June 10, 2002 2001 TASH Images Award Syracuse University Recipients Page 14 Early Childhood Intervention Personnel Why study inclusive education in Italy? Preparation Page 17 United Nations Death Penalty Resolution Page 23 observers cite Italy's programs as themost inclusive in the Inclusive Childcare Settings Page 24 world. There are site visits to schools in Rome, Florence, Bologna, Parma, Frenza and a rural villagenear Naples; guest lecturers from local, regional, and national levels. Time is planned for enriching cultural experiences involving the history,art. and TASH Connections is available on architecture in Rome, Florence, Venice, Parma, Pompeii, and Orvieto. audiocassette, in large print, and in Braille for people whose disabilities Write or call Dr. Carol Berrigan, Seminar Director, formore program informa- makethesealternativeformats tion: Center on Human Policy, Syracuse University, 805 S. Crouse Avenue, preferable.Call (410) 828-8274 ext. Syracuse, New York 13244-2280, (315) 443 -3851, e-mail: 102 to request an alternative format. [email protected] /IS Requests for permission to reprint material appearing in TASH Connections should be sent to: TASH Connections, 29 W Susquehanna Avenue, Suite 210, Baltimore, MD 21204, Attn: Priscilla Newton, Editor. Permission requests can also be faxed to (410) 828-6706 or sent via e-mail to.. WHOM DO I CONTACT? [email protected]. For issues of policy, chapter or committee support,or general con- cerns and suggestions, call: Nancy Weiss, Executive Director, at (410) 828-TASH, Ext. 101, e- mail:nweiss @tash.org For information on conferences, regional workshops,or technicalas- sistance, call: Denise Marshall, Director of Meetings and Technical As- TASH (formerly The Associa- sistance, at (410) 828- TASH, Ext. 103, e- mail:dmarsh @tash.org tionfor Persons with Severe For questions about the Annual TASH Conference, call: Kelly-Nelson; Handicaps) is an international ad- National Conference Coordinator, at (410) 828-TASH, Ext. 105,e- vocacy association of people with mail:knelson @ tash.org disabilities, their family members, For questions about membership, conference registrationor exhibit- other advocates and people who ing, call: Rose Holsey, Director of Operations and Member Services, work inthedisabilityfield. (410) 828-TASH, Ext. 100 or [email protected] TASH actively promotes the full For information on governmental affairs, call: Jamie Ruppmann, inclusion and participation of per- Director of Governmental Relations, at (410) 828-TASH, Ext. 104,e- sons with disabilities in all as- mail: [email protected] pects of life. To receive an infor- For information on newsletter submissions and advertising, market- mation packet, contact: TASH, ing and promotions, or permission to reprint, call: Priscilla Newton, Director of Marketing, at (410) 828-TASH, Ext. 102,e- 29 W. Susquehanna Avenue, mail:[email protected] Suite 210, Baltimore, MD 21204 For information onthe Journal (DASH), call: Fredda Brown, Editor- or phone (410) 828-8274, ext. 8 in-Chief, at (718) 997-5243; e-mail: [email protected] or e-mail: [email protected]. Don't forget to visit TASH's web site at http://www.tash.org PAGE 2 200 TASH CONNECHONS, NOVJDEC. 2001 GOVERNMENTAL AFFAIRS should support family-researcher Discusses rights under the statutes partnerships at all stages of the research and their regulations, along with rem- process. edies for their violation. For more information about the work of Includes extensive citations to the TASH Early Childhood Committee judicial decisions and U.S. Department of contact: Education interpretations of IDEA and Section 504 requirements. Elizabeth Irwin, Ed.D. Committee Chairperson Covers emerging legal issues such as: 0Queens College of the City University of New York -- the right to learn in the general Phone: (973) 744-3975 curriculum; E-mail: [email protected] -- fair participation in state- and district- wide assessments; ft -- rights of children with behavior that challenges schools; Updated version of the "Red TASH Early Childhood book" now available! -- transition from early intervention to Committee Sets Policy Agenda preschool services; and more! Center for Law and Members of the Early Child- Education For ordering information call 202 -986- hood Committee and confer- proudly 3000 or visit the Center for Law and ence participants met during announces the recent Education on the web at the TASH 2001 Conference and devel- release of its updated The Story Behind the organization's mission should be. This will be moving people out of institutions and Name Change That discussed later. into homes of their own with the support Never Happened they need; The Issues - A Snapshot moving children out of dead-end Continued from page 4, classrooms and segregated schools to inclusive The Language educational settings with the support they The language of the organization's name has need; T-A-S-H be the name, not standing for any generated the most controversy. It seems to moving adults out of sheltered work- specific words, with a tag line) come down to two motivations: one appears shops to real work with the support they Shouldn't be too similar to the acronym to target the means (e.g., "who" we represent need; of another disability organization so as to be or "how" we do our work), the other clearly eliminating the use of abusive and confusing targets the end (the results of our work). sometimes deadly techniques to control Many people who sent in comments during behavior in the name of treatment and The third subcommittee generated a list the survey period opposed having a name that replacing it with positive behavior support of members with disabilities who were highlights social justice and/or human rights strategies. invited to participate in the name change because it might be interpreted as TASH process, and shortly after, those individu- trying to be all things to all people, thus So, the question from some people who als were invited to all subsequent diminishing its focus on people who are target the "end" or the outcome might be, committee meetings. labeled as having severe disabilities. Interest in "What do we do that isn't working having the name reflect the people for whom toward social justice? All that we do CO Once the subcommittees completed their we are advocating is based on the real support progress for people with the most work, the full committee was charged with experience of professionals and family significant needs is, in effect, social generating several names that would be members who have seen the issues of children justice work." submitted.to the Board for a vote. The full and adults with the most intense support committee completed that work shortly needs get lost inshe-competition for better The issue of using the word "severe" in the before the 2001 conference in Anaheim. In services, better supports, better lives. It is seen name has been a hot spot in the discussions. order to get a feel for which of the proposed in our schools where the students labeled There are several issues surrounding the use of names conference attendees liked best, they "severely disabled" are least likely to have the word "severe." First, the word itself could get a sticker (or two or ten, as it turns access to the general education areas of the outside the context of disability connotes out) and place it next to the preferred name school let alone the general education serious, grave, bad, catastrophic. A severe and/or could write in what they considered a curriculum. It is observed in our communities storm means potential destruction; a severe better name. At the strategic planning where, despite supported employment drought equals loss of food; severe illness. meeting on Saturday at the conference, several initiatives, the adults who need the most hospitalization. There is nothing positive issues regarding the name change came up support to work at real jobs are still spending about the word. which led to the Board vote on that same their "working" day at sheltered workshops or afternoon CO keep the name as TASH, not worse; and where, despite the supported Second, it is a label that tends to be deficit an acronym. and to invite the name- living initiatives, people with significant oriented. It is awkward, to put it politely. CO change committee to draft a tagline to needs are most likely to live in congre- support the empowerment of people 'who accompany the name. gate arrangements. have significant support needs and at the same time label them as if they can never Two things were obvious from the issues that Some TASH members expressed concern that achieve self-determination. Third, the were discussed at the strategic planning people, members and non-members, would definition of "severe disabilities" is nebulous. meeting. First, we as the participants in this not look beyond the name of the organization The perception of who has a severe disability name-change process did not keep the to the mission statement to get an accurate and who doe's' not differs from person to membership informed every step of the way idea of what TASH is about. Many people person and the term is viewed as an exclusion- about the issues that were driving the various were concerned that without the word ary or discriminatory term by some. opinions about the name. For that, I "severe' in the organization's name, TASH's apologize. People who were not involved critical focus on people with the most We all have our image of who can be de- with the name change committee's work never significant needs would be lost. scribed as a person with severe disabilities. In had the same luxury, as we did, of working fact, even those who find the term unaccept- through the issues with those who feel Many people are concerned that maintaining able to use in the organization's name differently vet equally passionate about the a title that targets a population does not continue to use the term to describe a name of the organization. Second, it was very describe what we do with and in support of population of individuals. And so begins the clear that there is a perception that because those individuals or our vision. TASH is slippery slope of descriptive language. there is a difference of opinion on what the known for its commitment to the following: organization should be called, there is also a serious difference of opinion about what this 2 3 Continued on page 26 PAGE 5 TASH CONNECHONS, NOVJDFS. 2001 IASI MISSION STATEMENT TASH MISSION TASH supports the inclusion and full participation of children and adults with disabilities in all aspects of their communities as determined by personalized visions of quality of life. TASH's focus is on those people with disabilities who: Are most at risk for being excluded from the mainstream of society; Are perceived by traditional service systems as being most challenging; Are most likely to have their rights abridged; Are most likely to be at risk for living, working, playing, and/or learning in segregated environments; Are least likely to have the tools and opportunities necessary to advocate on their own behalf; Historically have been labeled as having severe disabilities; and, Are most likely to need on-going, individualized supports in order to participate in inclusive communities and enjoy a quality of life similar to that available to all citizens. TASH accomplishes this through,. Creating opportunities for collaboration among families, self-advocates, professionals, policymakers and other advocates; Advocating for equity, opportunities, social justice, and rights; Disseminating knowledge and information; Supporting excellence in research that translates to excellence itpractice; Promoting individualized, quality supports; Working toward the elimination of institutions, other congregate living settings, segregated schools/classrooms, sheltered work environments, and other segregated services and toward replacing these with quality, individualized, inclusive supports; Supporting legislation, litigation and public policy consistent with TASH's mission; and, Promoting communities in which no one is segregated and everyone belongs. fl o PAGE 6 TASK COMMON& NOVAEC. 200 NOVEMBER/DECEMBER 2001 Congratulations to the following newly elected members of the TASH EXECUTIVBOARD Tracy Knight Jorge Pineda (re-elected) Patrick Schwarz (re-elected) Jeff Strully We also extend congratulations and best wishes to Fredda Brown, the new Editor of JASH TASH's work is dependent on the financial assistance of our donors and members. We wish to acknowledge the generous support of our newest lifetime member jelirey L. StrullyMission Hills, California Lifetime membership entitles you to full international and chapter member benefits for your lifetime. The cost can be remitted over several monthly payments. If you are interested in becoming a lifetime member of TASH, please contact Rose Holsey at 410-828-8274, ext. 100. Thanks. too, to the gracious donations of the following individuals and organizations: ADAPT of Texas Ann McDonald Meredith Akers Elizabeth R. Obermayer Ron Broome Hyun Sook Park Michael Callahan Kathryn D. Peckham-Hardin Don Cardinal Mark Polit Christin S. Cooper Shirley Rodriquez Larry Douglass Wayne Sailor Anne Donnellan Amy Sharp Gary Goldwater Billy Smith Mary Hoskin Marti Snell Harold Isbell Debbie Webster Judy S. Itzkowitz Michael Williams Craig Kennedy Joe Wykowski Olga R. Krambs Michele Flasch Ziegler IPA PACE 7 TASH COMMONS, NOV./DEC. 2001 BEST CopyAVAILABLE LITERACY OPPORTUNMES literacy opportunities for children with significant disabilities are alsomost often found in inclusive settings. There's little that is absolutely essential to the above interrela- YOUNG CHILDREN'S tionships. For instance, a teacher ina CITIZENSHIP IN THE classroom segregated for young children with high-level support needs could setup a LITERATE COMMUNITY: dramatic play area. He or she could createa corner library. But in classrooms organized Significant Disability and the entirely around the notion of severe disability, Power of Early Childhood this appears to rarely occur. Inclusion For young children with significant disabilities, the link between inclusion, BY CHRIS KLEIWER, LINDA MAY FITZGERALD, AND DONNA literacy, and play originates in surround- RASCHKE ing attitudes and practices.Early childhood education personnel who understand that inclusion is a civil right begin with the premise that the young child with significant disabilities will participate as a full citizen of his or her The Clemente family includes The Link Between Literacy, natural (to use IDEA language), or Paulo, Jr., a bright-eyed five-year-_Dramatic Play, and Inclusion nonsegregated, environments.In old with a love for firefighters and -- The phrase "books, play, dress up" used by contrast, conventional education atti- because of his older brother's gridiron exploits Mrs. Clemente is quite profound. In our tudes that support segregation demand _ a passion for all things football. "They observational studies of literacy learning for that participation with nondisabled_peers wanted him to be in the 'moderate room,'" young children with significant disabilities, wait _until the child approximates some Paulo, Sr. explained in a recent interview. we've stumbled upon an interesting, inter- version of normality as generally twined set of phenomena: When dramatic determined on developmental assess- He was referring to school district play is a taken-for-granted part of the ments.In this sense, inclusion demands personnel who had tried to steer the educational environment, so too are consistent children first prove themselves - Clemente family toward placing the opportunities for children to engage and use cognitively, socially, communicatively, younger Paulo in a segregated primary grade printed language in varied formats. This and in other developmental domains. special education program following two years appears to be a transactional relationship: spent in an inclusive preschool. Paulo, Jr. was Literacy supports dramatic play supports Literacy and play, like inclusion itself, born with cerebral palsy and has multiple literacy supports dramatic play supports are conventionally linked to cognition disabilities. He primarily communicates literacy, and so on. and general development. The equation through symbol choices, eye gaze, and body demands that children first prove movement. Further, for young children with signifi- themselves developmentally, and only cant disabilities, dramatic play as a taken- then will opportunities for use of imaginative "They had nothing for him there," Mrs. for-granted part of the environment play and printed language be offered. In Clemente interjected, referring to the occurs almost exclusively in inclusive inclusive environments, however, participa- "moderate room," the room's moniker actually situations. Hence, meaningful and rich tion is the-premise and the expectation. used by education personnel. At his Citizenship in the classroom community also preschool they had books, play, dress up. Not Research suggests that play and means citizenship in that class's literate and there [in the moderate room]." Had the literacy opportunities together are play community. Clementes bowed to professional pressure, fundamental to the development of a young Paulo would have found himself in a child's critical thinking abilities, higher- The Relationship Between classroom nearly devoid of materials and order thought processes, social Dramatic Play and Literacy activities commonly associated with kindergar- interaction skills, and other important In our culture, the importance of dra- human capacities. Yet, for young ten and primary education - including books matic play and early literacy experiences children with significant disabilities, and opportunities to play and learn to read! access is often severely curtailed based is universally accepted -- provided the child on the assumption that critical thinking does not have significant disabilities! The and higher-order thoughts are either image of a child sitting on her father's lap far; far away or even an impossibility. Continued on page 9 BEST COPY AVAILABLE PACE 8 TAM CONNE61104 NOVJDEC. 2001 LITERACY OPPORTUNITIES THE IMPORTANCE OF of four-year-old students, we watched as a two rolled on the floor, giggling until a teacher LITERACY OPPORTUNITIES restaurant scene unfolded. In the center of cut short the roughhousing. The boy FOR CHILDREN WITH the room, teachers had arranged a few tables continued on, and Jason stood, and walked to with salt shakers, plastic utensils, and various one of the tables. He sat and picked up a SIGNIFICANT DISABILITIES menus borrowed from local establishments. menu, holding it upside down. A passing Continued from page 8 teacher noticed, stopped, turned the menu Several children sat at the tables, pouring over in Jason's hand, and said, "What are you over the menus, shouting out orders to a going to order? What're the choices?" With "waiter" who jotted down the various the teacher's hand over his, Jason pointed to reading a book, or laying on his stomach requests on a pad, but with tremendous the word hamburger (which had a picture of watching Sesame Street, or acquiring her own editorial control. "I want the hamburger," a hamburger next to it). He quietly voiced, library card, or wearing a plastic firefighter's one student yelled. "You get the pizza," the "Hamburger." They repeated this with several helmet while running wildly with stick in waiter explained, scribbling furiously on his choices. The teacher said, "Okay, what're you hand, looking for the nearest pretend fire, are pad. "How much is my meal?" another going to order? Oh waiter, we're ready to all understood to be fundamentally important student asked, grabbing a stack of fake money. make an order." The waiter appeared, pad aspects of healthy development. "Eight hundred dollars," the waiter re- and pen poised, and waited while the teacher sponded. "I don't have eight hundred Books, visual literacies, and dramatic quietly voiced in Jason's ear, "I want to order dollars," the patron retorted. "Then you're play wrench young children from the the ...," Jason finished the sentence, "Ham- out of the restaurant!" the waiter yelled. "I immediate here-and-now; they allow burger." "Hamburger," the waiter said, don't have eight hundred dollars either," children to transcend their own experi- scribbling into his pad, "That'll be eight another customer said. "Then you're kicked hundred dollars please." ences and explore the realities of other's, In a few out too," the waiter responded. whether that be through the eyes of Max, moments, Jason, like every other patron, In the above scenario, literacy was an integral King of all Wild Things, through the ears had been kicked out of the restaurant for part of the dramatic play, from reading of the elephant, Horton, who hears what lack of money. menus, to taking orders, to using the pretend others cannot, through the adventures of money. Also, similar to the experience of a very hungry caterpillar, or through Jason's participation as a literate, rightful engaging with a book, this dramatic play situations self-created with a few props. citizen of the inclusive preschool allowed children to transcend the immediate classroom creates opportunities for meaningful dramatic play, friendship, Research suggests that play and literacy opportunities together are fundamental to serious curricular encounters, cognitive the development of a child's critical and social development, and so forth. His thinking abilities, higher-order thought teachers are adamant that he and two peers processes, social interaction skills, and also labeled with disabilities are fully involved in the many ways literacies are structured in other important human capacities.Yet, for young children with significant inclusive early childhood programs. disabilities, access is often severely curtailed based on the assumption that The University of Northern Iowa was recently critical thinking and higher-order awarded a three-year U.S. Department of thoughts are either far, far away, or even Education Directed Research Grant to study here-and-now. They explored and took on an impossibility (which may in fact turn literacy development in young children with the roles of others. As the drama unfolded, into a self-fulfilling prophecy as profes- we watched Jason sit on the periphery of the sionals eliminate the very opportunities play, piecing together a jigsaw puzzle. Jason is necessary for the development of these four, has a label of autism, and entered the various capacities!).Deep. meaningful [Teachers need] to recognize school year considered to be nonverbal. In engagement with printed language is multiple literacies and open a range the intervening three months, Jason had restricted.If symbols are used at all, the of opportunities to children.For begun speakingfirst by reading text out focus is often solely on the child getting loud, and more recently making spontaneous instance, art of all kinds has been immediate needs met. Nothing is wrong utterances. a valued form of symbolic expres- with communicating immediate needs; sion since prehistory, and in every the dilemma is what gets left out. Jason appeared extremely intent on the culture on earth.For children with significant disabilities, however, art Multiple Literacies in the Inclusive restaurant play. Eventually, one of the patrons, kicked out of the restaurant by the Early Childhood Classroom has commonly been denied. dictatorial waiter, stumbled over Jason and the In a recent observation conducted in a preschool inclusive classroom made up Continued on page 10 PAGE 9 20 ',ASH CO/MECUMS, NOV./DEC. 2001 LITERACY OPPORTUNITIES THE IMPORTANCE OF Supporting Young Children with The need for teachers to develop comfort LITERACY OPPORTUNITIES Significant Disabilities as Citizens not knowing precisely where certain opportu- FOR CHILDREN WITH of the Literate Community nities will lead a child. Many teachers have Because of delimiting and restrictive behav- SIGNIFICANT DISABILITIES gone through preparation programs that iorist traditions in special education, includ- heavily emphasize behaviorist traditions. Continued from page 9 ing in early childhood special education, IEP These suggest we define exactly how a child and IFSP(Individual Family Service Plan) will perform, and then we condition and goals and objectives tend to be written as chain behavior toward these predetermined severe disabilities. EntitledThe Young Child's countable or measurable outcomes. It is ends. Such certainty is cast aside when we Citizenship in the Literate Community, difficult to put into concrete developmental open dramatic play opportunities to a child, preliminary findings suggest that effective sequences the subtle qualities of, for instance, or when we read together fromWhere the Wild early childhood educators have a set of dramatic play. Hence, education plans Things Are,yet these are opportunities purposes when structuring literacies commonly ignore these most vital of fundamental to citizenship. throughout the classroom.These opportunities we can make available to young purposes appear to include: children. Creative early childhood educators, The need for teachers to recognize however, find ways to slip the surly bonds of multiple literacies and open a range of +Transcendence: Lireracies structured to behaviorism in order to focus efforts on more opportunities to the child. For instance, art of move the child from the here-and-now in meaningful issues of citizenship. all kinds has been a valued form of symbolic order to explore roles and "walk in the shoes of expression since prehistory, and in every others.- In addition. we've begun to explore and culture on earth. For children with significant uncover certain apparently important disabilities, however, art has commonly been : Relational:Literacies structured to themes related to citizenship in the denied. This crime is based-on the myth that build understanding between adults and inclusive classroom's literate communityart is nonessential and that it's too abstract for children, and between children and their for young children with significant children with disabilities. This thensecs up peers. disabilities.These include: the self-fulfilling prophecy that people with disabilities have no need for the literacies of art Communicative:Literacies structured The need for teachers to recognize -- which has unnecessarily denied countless to promote interaction on the part of that children's social engagement with people particular children. one another drives the development of citizenship symbolic capacities.This means that opportunities : Skill Building: Literacies structured to rather than waiting for "proof" of available through promote the development of further. competence (as "articulated" by the painting, drawing, specific phonic - literacy skills and other child through symbolic capacities) prior sculpture, and curricular abilities. to opening complex social and play other mediums. opportunities. children's actual participa- Paulo Clemente, Jr., Interpretive:Literacies structured to tion in those opportunities is the terrain introduced at the convey ideas and promote understanding. on which symbolic competence will beginning of this ultimately be realized. article, is included Control: Lireracies structured to in a regular promote regulations, rule-following, and The need for teachers to structure symbols kindergarten for to impose limits. and print as communication.This includes as a the majority of the school day. Because his part of actual communication systems, but also parents fought for his right to access the means through such activities as role plays and general school community, Paulo continues to Again, this set of criteria is preliminary, and drama activities in which children are express- experience opportunities for dramatic play, most likely will change as our research unfolds. ing thoughts and ideas to one another. book reading, decoding skills activities, role Still, it is this sense of multiple literacies that plays, and so forth. He is a valued member of Jason, as a member of an inclusive class, is an The need for teachers to be willing to the classroom community, and is beginning to integral part of It is precisely this complexity provide unique supports for children's literacy demonstrate conventional reading and typing of which the Clementes demanded young development. Young students with, for skills. His parents and his current teacher Paulo be a part. instance, autism or severe physical disabilities understand he's exactly where he needs to be. May not make use of printed language in ways that conform to traditional developmental sequences. They may require technologies, physical supports, or activities that fit their particular needs. Continued on rage 11 BEST COPY AVAILABLE , PAGE 10 5 TASH MOTIONS, NOVJDEC. 2001 UTERACY OPPORTUNITIES THE IMPORTANCE OF York: Teachers College Press. LITERACY OPPORTUNITIES FOR CHILDREN WITH Kliewer, C. (1998b). Citizenship ARE YOU A SIGNIFICANT DISABILITIES in the literate community: An UNIVERSITY Continued from page 10 ethnography of children with Down syndrome and the written PROFESSOR? word.Exceptional Children64, 167-180. Chris Kliewer, Ph.D. is with the TASH has a Student Department of Special Education at the Kliewer, C. (in press). Literacy as Membership Program! University of Northern Iowa; Linda cultural practice.Reading & May Fitzgerald, Ph.D. is in the Writing Quarterly. The program was developed through Department of Curriculum and Instruc- discussions with professors who wanted tion at the University of Northern Iowa; Kliewer, C., & Bilden, D. (2001). to encourage professional identity and Donna Raschke, Ph.D. is with the through student membership in a strong "School's not really a place for Department of Special Education at advocacy organization while assuring reading": An analysis of the University of Northern Iowa. that their students had access to enough literate lives of people with severe issues of JASH for them to be able to Comments regarding this article may be disabilities. Journal of the Associa- complete a variety of journal article directed to Dr. Kliewer by e-mail, tion for Persons with Severe Disabili- review and comparison exercises they < ch risto ph er. kliewer@uni. edu> ties,26(1), 1-12. assign. Kliewer, C., & Fitzgerald, L. M. The package works like this: References: (2001). Disability, schooling, and the artifacts of colonialism.Teachers Professors can either assign TASH Erickson, K. A., & Koppenhaver, D. College Record, 103,450-470. membership as one would a text book or package of readings, or can offer if A. (1995). Developing a literacy as an option. Either way, if ten or more Kliewer, C., & Landis,- D. (1999). program for children with severe students join, they receive a discount off disabilities.The Reading Teacher,48, Individualizing literacy instruction the already low associate member rate. 676-684. for young children with moderate The discount amount increases as the to severe disabilities.Exceptional number of students signing up increases. Katims, D. S. (1994). Emergence of Children,66(1), 85-100. literacy in preschool children with Regardless of how many students join, disabilities.Learning Disabilities Kliewer, C., & Raschke, D. (in TASH provides a year's worth of back Quarterly,17, 58-69. press). Beyond the metaphor of issues of the journal to all students merger: Confronting the moral signing up under this plan. This means Katims, D. S. (2000). Literacy quagmire of segregation in early your students will start the semester with instruction for people with mental childhood special education. a year's worth of cutting edge research on their shelf and can build their retardation: Historical _highlights and Disability, Culture, 6' Education. collection over the years to come. contemporary analysis.Education and Under this plan, students receive all of Training in Mental Retardation 6- the regular membership benefits during Developmental Disabilities,35, 3-15. the coming year= in addition to an extra full year's worth of journals! Katims, D. S., & Pierce, P. L. (1995). Literacy-rich environments and the An introduction to TASH is likely to be transition of young children with one of the most valued resources you special needs.Topics in Early Child- can offer students as they enter the hood Special Education,15, 219-234. disability community in their profes- sional capacities. To receive materials or to learn more about TASH's Student Kliewer, C. (1998a).Schooling Membership Program, contact Rose Children with Down Syndrome: Toward Holsey, 410-828-8274, ext. 100 or e- an Understanding of Possibility. New 4v9 mail: [email protected] PAGE 11 TASH COMMONS, NOILANC. 2001 OCTOBER 2001 ATurning -Point Conference "All people have fundamental moral and constitutional rights." The Community Imperative, 1979 The Join (As Communit,9 To reaffirm the fundamental values and beliefs that have inspired the disability Imperative rights movement: To develop and commit to long-term public policy goals in support of these values: To strengthen advocacy organizations. create alliances, and obtain the information and tools necessary to succeed January 25 & 26, 2002 Oakland Marriott City Center 1001 Broadway + Oakland,California CONFERENCE California ..:616 SPONSORS Alliance Oilier on for '40, and Supporters. u man CAI.C National and Local oliey Inclusive Communities, Inc. Organizations & Individuals ADAPT, The Arc of the United States. American Association on Mental Retardation, TASH, The Research and Training Center on Community Living at the University of Minnesota. World Institute on Disability, National Coalition on Self-Determination. Capitol People First, Arc California, Coalition on Californians for Olmstead, Alpha ResourceCenter of Santa Barbara. California Department of Developmental Services, Allen & Shea Assocs.. Jim Conroy, Quincy Abbot, Steven J. Taylor, The Arc Solano, Tierra del Sol. Work Training Programs. Inc.. Easter Seals of Southern California. PRIDE Industries. Sojourn. Inc.. Tri-CountiesRegional Center, Regional Center of the East Bay, Valley Mountain Regional Center, Central ValleyRegional Center. __North Bay Regional Center. San Gabriel/Pomona Regional Center, Westside RegionalCenter, San Andreas Regional Center, Area Board V, Alameda County DevelopmentalDisabilities Council, Developmental Disabilities Council of Contra Costa County, Becoming Independent, Inc.. UCP of the Golden Gate To receive a full conference packet. including the registration form, contact:www.communityimperative.org Kim Olson at Alpha Resource Center. 1-877-414-6227 or [email protected] Center on Human Policy. Syracuse University. 1-800-894-0826 thechp©sued.syr.edu PAGE11.- TUB CONNECTIONS OCTOBER 2001 do,:z 0 THE COMMUNITY IMPERATIVE Conference The Community Imperative 1979 Vision A Refutation of All Arguments in Support of Institutionalizing Anybody because of Mental Retardation In the domain of Human Rights: All people have fundamental moral and constitutional rights. The California Alliance for Inclusive These rights must not be abrogated merely Communities, Inc., the Center on Human because a person has a mental or physical Policy, and our other local and national disability. sponsors invite you to join us for this historic Among these fundamental rights is the right to community living. event. In the domain of Educational Programming and In spite of enormous progress toward realizing Human Services: the principles set forth in The Community - All people, as human beings, are inherently Imperative declaration, California and other valuable. states are experiencing significant challenges to - All people can grow and develop. - All people are entitled to conditions which realizing community living for ALL people foster their development. with developmental disabilities. Such conditions are optimally provided in community settings. The California Community Imperative Conference is based on the vision of "The Therefore: In fulfillment of fundamental human rights and in Community Imperative," which asserts the securing optimum developmental opportunities, value of all people and the right of all people all people, regardless of the severity of their to community living. As we see it, disabilities, are entitled to community living. "community living" incorporates inclusive family life, schooling, housing, work and other meaningful daytime pursuits, recreation and leisure, relationships,_and other aspects of life _ - in our communities. At the conference, we will join with some of the leading individuals in the field of developmental disabilities, both in California and North America. We will revisit our history, focus on current challenges, and launch a continuing effort to achieve inclusion throughout the life span for all Californians with developmental disabilities. You are invited to join us in this endeavor. Together we cannot be denied. Registration: In order to make the conference more accessible, the registration fee is only $35 and may be waived upon request. Registration materials and more information is available on-line at www.communityimperative.org or by calling the Alpha Resource Center at (877) 414-6227 For Additional Information Contact: www.communityimperative.org Kim Olson at Alpha Resource Center, 1-877-414-6227 or caic(&,silcom.org Center on Human Policy, Syracuse University, 1-800-894-0826, [email protected] or http://soeweb.syr.edu/thechp/ PAGE 13 TASH CONNECTIONS. NOVAEC. 2001 211 2001 TASH IMAGES AWARDS TASH Recognizes 2001 TASH Images Award Win- Exemplary Achievement in Disability Media Coverage and Advancement: Exemplary ners: Janine Bertram Kemp Achievement in Exemplary Achievement in Print: Jennifer Burnett Steve Drake Media with 2001 Beth Mount Lucy Gwin Through the years, Beth Mount's art- Tani Susan Hartman Images Awards work, publications, and posters have May Johnson served to inspire us all to realize that Marcie Roth every person with a disability is a Greg Smith At its recent annual confer- valuable and productive member of William Stothers ence in Anaheim, Califor- community life. The impact of Beth's 30- These individuals have been selected to nia, TASH honored a year body of work has been extensive and receive this award in recognition of their selected group of individuals and is known throughout the world. Her career achievements and dedication to companies for their extraordinary work has been instrumental in helping raising public, political, corporate. and contributions in creating and people to find meaning in supporting mainstream media awareness in the area people with disabilities to build their of media coverage for people with promoting accurate portrayals of lives. people with disabilities in the disabilities and their families.Through their efforts, the ability of these constitu- media. Recipients of the 2001 Martha Perske ents to report on the issues affecting TASH Images Awards were hon- Since her first drawing appeared in the people with disabilities in a positive and ored for their efforts in: Greater Omaha Arc Gazette in 1971, the empowering way has been raised to new members of TASH and countless others heights. .Emphasizing inclusion or civil have been impressed with Martha's rights aspects of issues or stories stunningly powerful and sensitive drawings of people with disabilities as Documentary: part of their communities. Martha is a Supporting self-determination self-taught illustrator with a marvelous Disability Culture Rap and/or independent living philoso- gift for showing a person's disability and phy Producers: Jerry Smith and Cheryl Marie natural beauty at the same time. Wade Company: ACT Promoting empowerment of This high-energy delivery by Cheryl people with disabilities Exemplary Achievement in Children's Wade shows disability culture as never Programming: before.Powerful images representing Valuing the civic participation people of many different abilities provide of individuals with disabilities Sesame Street a strikingly new perspective on disability. Since its inception over 33 years ago, Sesame Street has achieved well-deserved Contributing to the shaping of Thinking Big recognition as one of the preeminent Producer.. Eleanor Yu positive images and helping to children's education and entertainment eliminate stereotypes Company: ABC News, "Hopkins 24/7" programs in the world. Well before it Inspiring story about one of the most became the politically correct thing to do, brilliant orthopedic surgeons in the Promoting accessibility the originators of Sesame Street produced world, Dr. Michael Ain, who specializes a program where the cast of characters - in treating dwarves, or little people. Dr. Portraying and embracing which includes Linda, the librarian who Ain is himself a little person, and has diverse characters happens to be deaf - interact with and paved the way for other little people to discuss people of different races, pursue careers in the medical profession. We take this opportunity to salute ethnicities, and abilities on a regular basis. the achievements of the following award winners, and acknowledge their contributions in promoting positive images of people with disabilities in mainstream media. Continued on page 15 PAGE 14 TASH COMIECHONS, NOVJDEG. 2001 2001 TASH IMAGES AWARDS TASH Recognizes Exemplary production is recognized for its diversity and Baltimore Sun, "Race, disability: a double Achievement in Media with its celebration ofAmerican Sign Language. minority" (July 24, 2001) 2001 Images Awards Author. Mike Adams Recognized for its well-written discus- Continued from page 14 Print: sion of various aspects of blindness, and its insightful discussion of a little touched Documentary (cont.): Washington City Paper, "Before Their on subject -- race and disability. Time," (Oct. 27, 2001) Honorable Mention Author Annys Shin Wall Street Journal, "Those Suffering Creative ExpressionsOpportunities for This compelling story depicts the struggleSpecial Stress" (October 18, 2001) Persons Who Are Deaf-Blind of young people with disabilities who Author. Albert R. Hunt Producers: DB-Link, The Blumberg have been forced to remain in nursing A sobering look at how the horrific Center and VSA Arts of Indiana homes in Washington, D.C. The story is events of September 11 have impacted Honored for its positive emphasis on an accurate account, written in empower- the security-consciousness of the nation. inclusion and its use of art as a means of ing language, and based on information This story is honored for having raised communication. obtained from people with disabilities as awareness in the media that better primary news sources. emergency procedures must be designed for all people. New Media - Internet: Rosie Magazine, "Mom Power" (October 2001) Laura Hershey TASH Recognizes Exemplary Company. Nickelodeon Achievement in Media with Young People's Program -Animation: This unique venture between Nickelodeon 2001 Images Awards and Sesame Workshop provides a much- Rocket Power, "Radical New Equipment" needed educational media resource focusing Continued from page 15 Producer David Rosenberg, Klaskv on tolerance and diversity. This original series Csupo Productions takes two real kids from different backgrounds Company: Nickelodeon and switches their lives while the cameras roll. Public Service Announcements - This episode of the popular animated The show is designed to help kids get a Television (cont.): series brings a character face-to-face with firsthand look at how people from different her own well-meaning but misinformed, backgrounds and perspectives see the world. portrayed with dignity and respect, and with misguided pity for another childone who a worldly and far-reaching vision of commu- happens to have a disability and one, she later My Louisiana Sky nity and inclusion. discovers, who is as fierce a snowboard Producer Anthony Edwards competitor as herself. Company: Showtime _ 1) Learning 2) Working Recognized for its poignant and sensitive Producer. Alberta Association for Clifford, the Big Red Dog, "A New tale about a rural family's loving and Community Living Friend" positive support of one of its members Powerful public service announcement Producer. Deborah Forte, Scholastic with mental retardation during the 1950s, that promotes empowerment and values Entertainment well before such terms and concepts were the civic participation of people with Company: PBS widely used. disabilities. He's BIG, he's RED, and he's a great friend. He always stands up for what he thinks is right. Though Clifford's head is Television - Commercial Advertising: sometimes in the clouds (literally!), his four paws are planted firmly on the TOKENby Gail Bottoms Cingular Wireless ground.Clifford's positive character Cingular and the artistic abilities of Dan traits are very much in evidence as he I've been called a lot of names, Keplinger received national acclaim for leads his canine friends to understand, Retard, Simple, downright Plain. this commercial, which premiered duringaccept, and embrace the new arrival in Now [ a ] new one I can daim the 2001 Super Bowl, and emphasized their neighborhood, a dog with three legs. Add Token to my name the painter's incredible artistic talents and his means of self-expression through his Pelswick A Token they say sits on boards and work. Producer. John Callahan and Nickelodeon committees and such, Company: Nickelodeon You listen to plans but do not touch. Television- Drama Series: The first animated children's program to feature a kid with a disability, Pelswick They have you there it is clear and plain "Family Law" has captured the hearts of millions of To be a symbol - consumer: guy or Producer. Stephen Nathan viewers - both young and young at heart. dame. CBS Television You're just a Token - they want your _ - Honored for its ongoing commitment to Honorable Mention name. accurately portraying images of people Futurama, "The Cyber House Rules" with disabilities as demonstrated by Producer. Brian Cowan We have a consumer on our board - casting an individual with a disability, Company: M. Groening we're good birds Allison Gray, in a-recurring role, and its The grass is not always greener on the But [ you're ] not given a chance to say a topical episodes which have served to other side.So learns a character with a word. create dialogue around disability related disability in this episode about accepting If you say something, you're not heard. issues. oneself for one's own special and unique You're just a Token - nothing more. gifts, and not attempting to get fixed or "CSI" looking for a cure. I guess of the names I can recall, Producer. Jerry Bruckheimer I hate Token most of all. CBS Television This poem was developed as part of the TASH Recognized for its ongoing commitment Young People's Program -Live Action to shaping positive images of people with Teleconference: Effictive Strategies for Ensuring disabilities as demonstrated by casting Self-Advocates are Involved in All Aspects of the A Walk in Your Shoes Service/Support System on 9/25/01. Robert David Hall in a recurring role. Producer. Danielle Bertarelli PAGE 16 214. TASH CONNERIONS, HOYMEC. 2001 PERSONNEL PREPARATION methods In another area of the classroom, a course at the community college student is facilitating \I community block play among a group of children. college. The a ly Childhood Intervention cameras also The scene is being observed by the record a master teacher in the program, who is Personnel Preparation: small group also a part-time instructor in the commu- Backward Mapping for Future of children nity college program. Although she has who are just finished her doctorate in early Planning husking corn childhood, she will remain with the with the help program. The chance to supervise BY PAMELA J. WINTON of a teacher's students, teach at the college level, and aide. Shelves still have some time with young children holding pots makes her job particularly fulfilling. and cooking utensils are labeled in While children are napping, teachers and English and Spanish. aides are busy with other credit-earning IMAGINE THIS: A group of activities that are part of each staff A small beep causes the children to look person's individualized professional toddlers and preschoolers are up from their husking to a TV monitor in gathered around two adults during development plan. Members of a small the room. "Hola," says the man on the peer coaching team discuss their notes "story time." A teacher is reading from a screen who is sitting behind a steering from classroom observations. A teacher big book with brightly colored pages that wheel and wiping sweat from his brow, and aide work together on a web-based include English and Spanish words for "Is lunch about ready?" The man is Juan, computerized instructional module on different objects in the story. A graduate father of one of the children in the small early literacy. An early childhood student from a nearby university is group. Each day a parent is invited to joinintervention consultant visits 4 times a signing the story in American Sign the children for lunch. It is Juan's turn week to provide follow up to the web- Language (ASL) to a child in the group today, and even though he cannot come based instruction and to demonstrate and who is wearing a hearing aide. The in person, the classroom's electronic provide feedback as teachers and aides children all have finger puppets that connections with home and family implement strategies. represent different characters in the story, workplaces (including Juan's truck, and as a follow-up activity to the story which serves as his office) means that all Parents have found the web-based the "puppets" take turns acting out roles parents can "visit" and contribute to instruction and video footage particularly in the story. One of the children uses a classroom activities in numerous ways. helpful in strengthening the home-school device that he operates with a switch to partnership. Home visits by the consult- move his puppet when it is his turn. A Juan is not only a frequent classroom ants supplement what parents learn child next to him helps upright his puppet visitor, he is also a member of the through technology, and parents and when it falls off the device. "Accountability Council," a staff-parent teachers say the opportunity for parents group engaged in a self-study of the to observe teachers using particular Off in the corner, a college student program. He has committed 10 hours a techniques in the classroom encourages watches carefully and enters data into a month for 18 months to this project. The the exchange of ideas with each other on portable laptop computer. She is evaluat- financial reimbursement that Juan a regular basis. Some of the parents have ing an intervention designed to enhance receives makes it possible for him to take opted to get college credit for their friendships. She is part of an action time away from his landscaping business. involvement in web-based instruction. research project designed by the teachers, The consultants are members of one of university faculty, and students. The several transdisciplinary teams that make teachers have sought assistance from the up the local unified early childhood university because they were worried intervention system in the county. about the social inclusion of a child with Personnel prepasntion is an Children with disabilities are served by disabilities. One outcome of the collabo- ongoing part of the fabric of the same team until they reach age 8. ration has been that two of the teachers daily work. The driving force behind the content and specific are receiving college credit for their educational activities is the Community-based teams (also known as participation in the research project. basic question, "What do we "learning pods") consisting of the need to know and do to preschool staff from 3 centers, public The scene is being silently recorded on improve the outcomes for all one of several videocameras that dot the young children?" ceiling of the classroom. Some of the footage will later be used for teaching a Continued on page 18 PAGE 11 TASH COMMONS, HOHMEC. 2001 PERSONNEL PREPARATION Early Childhood Intervention unified early childhood intervention daily work. The driving force behind the Personnel Preparation: system. Universal pre-kindergarten for content and specific educational activi- Backward Mapping for Future some toddlers, and all 3- and 4-year-olds ties is the basic question, "What do we has been mandated for years now. Planning need to know and do to improve the Because of liberal and flexible family outcomes for all young children?" Continued from page 17 leave and family support policies. the number of infants in group care has The specific features of this vision for greatly diminished over the last decade. school kindergarten teachers from the personnel preparation include the neighborhood elementary school, an following: At a retirement early intervention team, parents, and party for the faculty and traditional students from both Personnel preparation is guided at administrator of 2-year and 4-year colleges, participate in the community, program, and individual the program, the quarterly workshops as part of a commu- levels by integrated, collaboratively students in their nity-wide professional development plan. developed personnel development plans. 20s are shocked The county has several "learning pods," Responsibility for planning, implement- when they hear each unique to specific parts of' the ing, and evaluating the plans is shared stories about the community. Cross-site visits and commu- among disciplines, agencies, institutions, working condi- nity-based peer coaching groups have and individuals. tions, low been especially helpful in promoting salaries, and positive changes in classroom practices, A variety of models and strategies education levels according to evaluation data being for personnel preparation are available collected through the grant. of early childhood staff "back in the and accessible for meeting the needs of day." The "Children's Revolution" that learners, including indMdually guided A critical part of the success of the brought about the massive policy changes instruction, observation/ assessment, in the early 2000s accomplished more county's professional development action research, peer coaching, direct activities is a cadre of committed and than these young students imagined. teaching, modeling and demonstration, trained substitute teachers and volunteers Would they have pursued careers in early lectures, readings, and workshops. childhood under the old conditions? who help on a daily basis in the early- Professional development activities take childhood programs. Many of the Probably not was what they said.... It place predominately in early childhood substitutes are retired teachers. In was not simply the salary and status environments. differentials of the old days. They simply addition, program administrators receive could not imagine the isolation and support for orchestrating the program's Emphasis is placed on learning in fragmentation of a system that did not specific and community-based staff teams and through -relationships. include time for planning, reflecting, and development activities. This is a large part of their job, and they work closely making improvements. In 2030 with There are structures (career ladder) and with the master teachers who are respon- federal, scare, and local budgets and concrete incentives (credit toward college sible for overall evaluation of their policies realigned to reflect the public degrees, promotions, pay raises) that support priority for early education and family programs' staff development plan. The staff for engaging in professional develop- support, they feel like valued members of business community has provided the ment. the workforce. What a difference a technology expertise and support critical generation can make. to the strong communication links that The impact of personnel preparation are pan of the system. on the implementation of new practices + and child outcomes is evaluated at the Because the various training activities are individual, program, and community linked with increases in compensation forEmbedded in this vignette is my vision levels. for personnel preparation in the future. staff, turnover has decreased by 75% over the last decade. The positive impact on The centerpiece of the vision is a well- Families have options for active and children has been documented. Goal I ofpaid, well-educated early childhood meaningful involvement in all aspects of the Year 2000 educational goals for the intervention workforce situated in personnel preparation, including county was finally met in 2020. Children "learning communities" whereby monitoring and evaluating outcomes. are now entering school ready to learn parents, practitioners, administrators, according to teacher and parent percep- consultants, and university and commu- Some features of the vignette are not tions, observations, and standardized nity college faculty are mutually account- visionary at all. Personnel preparation able for creating quality early environ- outcome measures. Of course, school programs with some of these features entry has a completely different meaning ments for all children. Personnel prepara- tion is an ongoing part of the fabric of now. Public schools are part of the Continued on page 19 PAGE 18 4 IASI! CONISTON& ROMEO. 2001 PERSONNEL PREPARATION Early Childhood Intervention program administrator said, "What I The second event that stressed our collabora- Personnel Preparation: need and can't find are therapists who can tion challenges was an interdisciplinary panel Backward Mapping for Future work in consultative roles in childcare of early childhood interventionists that I settings." It is no wonder we are not convened for an interdisciplinary graduate Planning achieving our goals for inclusion; recent class on working with families and teams. The Continued frompage 18 research suggests that families of children panelists were all excellent role models, with disabilities are facing the same espousing family-centered, collaborative challenges they faced 20 years ago when beliefs and practices in their responses to can be found in many communities. Existing seeking inclusive early childhood a case vignette. The students were guidelines for professional development programs (Ervin, Soodak, Winton. & impressed with their expertise and include many of the features highlighted Turnbull, in press). sensitivity in dealing with the complex above (Collins, 1999; Winton, 1994; issues raised. Winton. McCollum, &; Catlett, 1997). However, students were shocked when it However, some of the features, especially croachieve the kinds of became apparent that most of the those dealing with policies and resources, university-community panelists, some of whom shared children seem unobtainable. A vision for the partnerships portrayed in on their caseloads, had not personally future should have some chance for the vignette, we must met each other prior to the panel, even realization. Which elements of this eliminate the traditional vignette are possible? Can certain features though they were working in the same boundaries between community. Students also realized that be achieved without others? Is a preservice andinservice. "Children's Revolution" a necessary families needing their services would prerequisite for securing the resources have to travel to different sites, negotiate that would support this mythical early different forms and reimbursement Examples of effective inclusion are hard to childhood program and personnel procedures, and so on, to benefit -from the find, so students are not able to see demon- professionals' expertise. Most appalling preparation system of the future? strations of effective inclusion practices. was the realization that there was no Therefore, they enter the workforce unpre- This article focuses on three areas where guarantee that the collective power of pared to implement inclusion, which this particular- group would ever be change is well within our reach: inter perpetuates the lack of acceptable practica focused on a real child. It took a class agency, interinstitutional, and interdisci- sites. This "catch-22" situation persists, in simulation to create this particular plinary collaboration; appreciation for part, because neither faculty nor program diversity; and family involvement. These team." The lessons on the importance administrators see the problem from a areas are not new ones. In fact these are and challenges of interagency coordina- perspective that suggests they have some tion were beautifully r(and tragically) some of the "catchwords" of the 1990s. responsibility for the solution. The challenge is how to move from talk illustrated by the panel. to action. By starting with this vision, and We must break these kinds of cycles and For a decade, we have operated on the mapping back to the present, I hope to strengthen collaboration among institu- belief that a small amount of federal identify stepping-stones for realizing tions of higher education and community support for state and local level inter- what is now fantasy. programs and practitioners. It is not that agency coordinating councils, along with INTERAGENCY. we lack knowledge about effective some talk about the importance of INTER IN STITUTI-0 NAL, AND classroom practices that promote interagency collaboration, would be INTE R D ISC I PLINARY inclusion. Research has defined quality enough to transform the myriad-of COLLABORATION early childhood environments (CQO, agencies and institutions providing 1995) and identified critical components services to young children with disabili- The vignette paints a picture of collabo- to implementing inclusion in early ties into a "seamless early intervention ration in personnel preparation occurring childhood settings (Odom, 1998). across multiple partners, disciplines, service system" (Shonkoff & Meisels: Faculty and practitioners have a mutual 1990). We hoped to conquer the chasm institutions, and levels. Two events responsibility for using this information that exists in most states between the Part highlight the extent of our collaboration to make changes in program practices. To C services for infant to 3-year-olds and challenges and how slow progress has achieve the kinds of university-commu- the Part B services for 3- to 5-year-olds been over the last decade. The first event niry partnerships portrayed in the was a 2000 statewide meeting on person- by requiring that transition plans be part vignette, we must eliminate the tradi- nel development. During the meeting a of the early intervention services pro- tional boundaries between preservice and vided to families. We also hoped that faculty member stated, "What I need and inservice. can't find are quality early childhood statewide personnel development committees praaica sites where inclusion is being practiced." Later in the meeting a Continued on page 20 PAGE 19 TASH CONNEMONS, NOV./DEC. 2001 PERSONNEL PREPARATION Early Childhood Intervention -bottom up" efforts are absolutely instigating changes and collaboration among Personnel Preparation: necessary and must be encouraged if families, communities, and universities and Backward Mapping for Future there is any hope of making progress in community colleges. These efforts have creating the kind of "learning communi- emerged as part of these states' participation in Planning ties" (Fullan, 1993) described in the federally funded faculty training projects Continued from page 19 vignette. What follows are some ex- based on a systems change model (see amples of promising initiatives that Early Childhood Intervention courses focused on diversity); historical legacy The National Black Child Development Personnel Preparation: (e.g., mission, history of racism and exclusion); Institute has initiated an Early Childhood Backward Mapping for Future psychological climate (e.g., attitudes and Leadership Corps to promote diversity in early perceptions of discrimination and prejudice); childhood leadership through student Planning and behavioral factors (e.g., knowledge and fellowships (National Black Child Develop- Ccnunued from page 20 skills of students and faculty, pedagogical ment, 1999). practices used in the classroom that APPRECIATION FOR reflect sensitivity to differences). The U.S. Department of Education DIVERSITY (OSEP) has funded minority personnel A recent review of the literature on early The vignette suggests that teachers are preparation grants and a special institute intervention personnel development comfortable and competent working with (Culturally and Linguistically Appropri- related to diversity issues indicated that bilingual children and in a multicultural ate Services Early Childhood Research we have much work to do in all of these environment. Current research indicates that Institute) to increase leadership and areas (Hains, Lynch, 86 Winton, 1999). this represents a substantial change from our promote competence around diversity_ It suggested that we need to look to other issues (1998). current situation; a national survey indicated disciplines, such as counseling that less than 20% of our nation's teachers (Pontoretto, 1996) and early childhood who work with culturally diverse students feel Wheelock College has foundation (Alvarado et al., 1999; Derman-Sparks & well-prepared to meet the needs of these support for their Taking the Lead Phillips, 1997), that have a longer history students (U.S. Department of Education, Initiative (Alvarado, 1997), designed to in addressing diversity for help in moving 1999). increase early childhood leadership forward as a field. opportunities with certain projects By 2030, the non-Hispanic White focusing on diversity. In talking with other early intervention- population will be in the minority of the ists who share an interest in diversity U.S. population under 18 (U.S. Depart- FAMILY INVOLVEMENT IN issues, I am struck by several things. !Irene of Education, 1999). Unless we are PROFESSIONAL There are perceived risks in getting able to create a major change in current -DEVELOPMENT involved in the topic; these risks include trends, the majority of teachers, adminis- The vignette shows families being being misunderstood, using the "wrong trators, and consultants serving young involved in their children's early child- language," becoming involved in contro- children and their families will be White hood program in a variety of ways, versy and misunderstanding, and becom- (AOTA, 1990; ASHA, 1995; DEC, several of which relate to personnel ing exhausted from being a "lone voice." 1997). We have two pressing goals: to preparation. Families in the vignette had Whites who are interested in promoting address the absence of diversity in our many of the same personnel preparation discussion of the topic sometimes fear earls' intervention teacher and leadership options that teachers had, and they were they lack credibility. Persons of color corps and to promote the competence of supported in their involvement through interested in the topic sometimes feel the personnel working with ethnically and incentives, such as reimbursement and people with the power to make changes linguistically diverse students and course credit. They were viewed as team are not interested in participating in families. members and "equals" in these activities. dialogue; those who are interested Information and expertise were shared represent a small handful of people, and Research conducted by the National through a two-way process. Parents were they are tired of "preaching to the choir." Black Child Development Institute also shown taking a leadership role in Clearly, partnerships are needed if we are (Moore, 1993) suggests that one of the terms of program self-assessment and to make progress in this personnel significant contributors to the absence of evaluation. preparation area of critical importance. diversity in early childhood leadership are the barriers created by higher educa- In a 1999 issue of Topics in Early Promising Initiatives tion. Degrees and credentials convey Childhood Special Education (19:3, a set Some of the promising early childhood authority, credibility, and pave the path of articles on parent education suggested intervention initiatives that address increases in to leadership positions. Therefore, it is that we do not have uniform agreement particularly important that we examine diversity at leadership levels and promote about how parents should be involved in factors that can be changed in institutions competence in working with diverse children personnel preparation. A central theme of higher education. Hurtado, Milem, and families to the articles in TECSE was agreement include the Clayton-Pedersen and Allen (1999) that options and choices for families are following: identified four levels of change that must centrally important. be addressed simultaneously: structural characteristics of training programs (e.g., number of minority students enrolled, number of minority faculty, number of Continued on page 22 PAGE 21 USA CONNECHONS, NOVJDEC. 2001 PERSONNEL PREPARATION Early Childhood Intervention OOOOO Parent Training and Information From "Early childhood intervention Personnel Preparation: personnel preparation: Backward Backward Mapping for Future Centers, Family Support Networks, and other family advocacy organizations that provide mapping for future planning," by Planning support to families in leadership roles are in Pamela J. Winton, Summer 2000, Continued from page 21 place in all states and in many communities Topics in Early Childhood Special (Council for Exceptional Children, 1999). Education. 20, 87-94. Copyright 2000 by PRO-ED, Inc. Reprinted with One strategy for solving definitional issues is to permission. encourage each early childhood program to Federal grants (U.S. Department of develop its own unique definition of family Education, 1998) support a number of involvement within some broad parameters, innovative training programs and initiatives REFERENCES and to include family members in the develop- that provide models for including families in Alvarado, C. (1997). If leadership was everyone's domain. Boston: Wheelock College, The Center ment of that definition. In other words, by leadership roles. for Career Development in Early Care and including families in active, meaningful Education. decision-making roles about program policies A few states, such as Kansas and Alaska, are including parents as part of early interven- and practices, programs will construct mean- Alvarado, C., Burnley, L., Derman-Sparks. L., tion program monitoring and evaluation teams ingful family involvement strategies (Winton Hoffman, E., Jimenez, L., Labyzon, J., Ramsey, (Winton & Crais, 1996). & Crais, 1996). The family involvement P., Unten, A., Wallace, B., & Yasui, B. (1999). In strategies will evolve in response to community our own way: How anti-bias work shapes our and policy changes and the evolving needs of I began the article with the suggestion that lives. St. Paul, MN: Redleaf Press. families in the program. a revolution might be necessary to bring about the changes in policies and resourceAmerican Occupational Therapy Association allocation needed to support my vision of(AOTA). (1990). Member data survey. The "Accountability Council" mentioned Rockville, MD: Author. in the vignette is the kind of structure that personnel preparation. However, I also suggested that taking small steps in the I can envision for making that possible. American Speech-Language-Hearing areas of collaboration, diversity, and One advantage to this kind of approach is Association (ASHA). (1995). We can do that it provides a different kind of struc- family involvement could bring slow but better: Recruiting, retaining and graduating ture for parent advocacy. Historically, westeady progress toward the vision and in African American students (pp. 54-56). have depended on parents to do the bulk offact might help with the revolution. How?Author. our advocacy work. The reasons often It will take a "learning community" of cited include the following: Parents have families, practitioners, administrators, Collins, D. (1999). Achieving your vision of professional development: How to assess more credibility; when professionals faculty, researchers, and businesses to develop the shared vision and commit- your needs and get what you want (2nd advocate for more or better services, it ed.). Tallahassee, FL: SERVE. seems like we are trying to protect our ment to change our national priorities around early childhood. jobs; and parents are successful; their Cost, Quality and Child Outcomes Study stories make an emotional and immediate Team. (1995). Cost, quality, and child impact on policymakers. Without that shared vision and commit- outcomes in child care center: Public report. ment at the community level, we will Denver: University of Colorado, Economics However, there are some disadvantages forcontinue to operate with a massive gap Department. parents. They become tired of the role between what we know from research and how we practice. We know what consti- The Council for Exceptional Children. over time and do not feel supported or (1999). Discretionary projects supported by appreciated by the systems they are trying tutes an effective personnel preparation system, just like we know what makes an the Office of Special Education Programs to change; this can create stress, tension, under the Individuals with Disabilities effective early childhood intervention and fear that their children will suffer as a Education Act, Fiscal Year 1999. Reston, result of their advocacy (Erwin et al., in program. The question is whether that VA: Author. press). We need to find creative ways to information can be shared in ways that incorporate parent knowledge of programmake the need for changes in policies and Derman-Sparks, L., & Phillips, C. B. (1997). strengths and weaknesses and their desirespractices undeniable. It will take a nation Teaching/learning antiracism: A develop- mental approach. New York: Teachers for making improvements into our of informed "learning communities" to make this vision a reality. College Press. Division for Early Childhood. ongoing program evaluation efforts. (1997). DEC Membership Report. Reston, VA: DEC/CEC. Promising huititnii-es There are some promising initiatives that Erwin, E., Soodak, L., Winton, P., & provide stepping-stones to achieving this Turnbull, A. (in press). I wish it wouldn't all vision for family involvement in personnel depend upon me: A critical analysis of research on preparation: 4 0 Continued on page 26 PAGE 22 TASH CONNECIONS, NOVAEC. 2001 DEATH PENALTY RESOLUTION TASH Adopts Death Rationale or unskilled in how to support these persons in the criminal justice process, or may fail to Penalty Resolution 1. Thirty states currently prohibit the execu- recognize an accused individual's difficulty or tion of persons labeled as having mental inability to assist in his own defense in court retardation. TASH is committed to assisting proceedings. TASH has adopted one of the nation's the remaining twenty states to develop most powerfully worded resolutionslegislation that will prohibit the execution of 7. A prosecutor may call for the death opposing the execution of persons persons with these disabilities. penalty or a judge and jury may impose the death sentence without considering the labeled as having mental retardation. 2. TASH recognizes that any persons, status of disability as a significant mitigating The adoption of this resolution comes at including those labeled as having mental factor and without understanding the a critical time in the determination of retardation can commit capital crimes. TASH impact of societal discrimination or the federal legislation on this crucial issue. calls for a more humane and just determina- vulnerability inherent in having a disability The U.S. Supreme Court agreed in tion of what the sentence should be for such as those described. September that it will hear the appeal of individuals with disabilities. Daryl R. Atkins, a man who is labeled as 8. Taking all of these factors into account, having mental retardation and who has 3. Societal discrimination, lack of education, persons labeled as having mental retarda- as well as an individual's personal abilities been convicted of murder in Virginia. tion do not have the opportunity for a affect how persons labeled as having mental rational, individualized, fair determination retardation perform within society.Given theof sentencing. Many people consider this case to be onenature of discrimination against people with of the most significant the Supreme Courtdisabilities, as well as the real challenges that will hear this session. A decision will be these individuals may experience in commu- THEREFORE BE IT RESOLVED, based on whether a majority of the nicating and processing information, it is to THAT TASH, an international advocacy justices finds that there is a national be expected that when accused of a crime, association of people with disabilities, consensus against executing people with such persons may inappropriately blame their family members, other advocates mental retardation.This issue was last themselves, assume responsibility for the criminal conduct of others, fail to remain and people who work in the disability considered by the Court in 1989 and the silent in their own defense, provide false field, believes that it is beyond the ability practice was upheld.Justice Sandra Dayconfessions, or give criminal justice authori- of the criminal justice system adequately O'Connor's 1989 opinion said the best ties the responses they seek without regard to assure the fairness of death sentences evidence of a national consensus that the for the truthfulness of such responses. in these cases and that such sentences are, punishment was "cruel and unusual" in all cases, a clear abridgement of the would come from the laws passed by state4. An accused person's communication and rights of persons considered and/or legislatures on this issue. thinking abilities are significant at every stage classified as having mental retardation. of a capital case, including initial police TASH's adoption of this resolution was questioning, determining competency to * * * stand trial, the guilt/innocence phase of the initiated by long time TASH member, trial, the sentencing phase, and all subsequentSources that influenced this document: Bob_Perske, who drafted the resolution's proceedings, including consideration of original language. clemency. The behavior and responses of a American Bar Association. Death without person labeled as having mental retardation justice: A guide for examining the administration may appear unusual or different and may of the death penalty in the United States. (See result in misunderstanding, trigger special the section on mentally retarded and scrutiny from police officers, or result in mentally ill defendants and offenders. pp. TASH Resolution Opposing the Execution unfair proceedings at any stage of the 55-61). http://www.net.org/irr/ of Persons Labeled as Having Mental criminal justice process. FINALJUNE28.pdf. Retardation 5. In these cases, Miranda warnings are oftenHuman Rights Watch: Beyond reason: The Statement of Purpose meaningless because they are presented death penalty and offenders with mental without appropriate accommodations CO a retardation. http://www.hrw.org. TASH unconditionally opposes the execu- person's disability or vulnerable circumstance. tion of persons labeled as having mental Some individuals labeled as having mental Earnest Paul McCarver v. State of North retardation'. Although TASH promotes the full retardation are so adept at combating and Carolina. The Amicus Curiae Brief of The participation of all persons with disabilities in avoiding stigmatization they fail to be candid American Association on Mental Retarda- society, one of its many missions pinpoints the about their disabilities when to do so could tion, The Arc of the United States, et al. United States Supreme Court's current effort to be in their best interest. For these reasons, it http://www.aamr.org. decide whether it is constitutionally right or is likely that persons with these disabilities wrong to execute persons considered and/or may be unable to respond voluntarily and classified as having mental retardation. TASH effectively in their own defense. 1 When the term "labeled as having mental believes that executing these persons is so retardation" is used within this resolution, it is repugnant that, in every case, it violates current meant to include all individuals who would fall 6. Defense lawyers may failto recognize the American standards of decency. within the legal definition under Section 504. vulnerability of their clients,may be ignorant 20-) PAGE 23 TASH COMMONS, NOVJDEC. 2001 ith the popularity ready, and only mention your child's of the books and disability after you think this is a the subsequent program you might be interested in release of the movie, Harry using for care. There is no sense in Potter has become a house- putting yourself through disappoint- hold name, particularly for ment and discouragement of families of young children. situations not working out because The world of wizardry, someone isn't willing to care for your although fantastical in our child, when in reality even if they thinking can have many BY PEGGY FLORIO had been willing and open to the lessons and analogies to idea, you weren't satisfied with the finding inclusive child care. program. With the right combination of ingredients, something The next step in securing a magical can be created. successful child care situation is to visit various programs that seem to be Thinking about the story of appropriate for your child and family Harry, a child with unique needs. Visiting programs can draw talents and special needs, parallels to Harry's first trip to Diagon posed challenges when finding the from each other, and require persistence, trust, Alley -- the underworld of wizards. You may appropriate environment.Harry's and positive desire to succeed. see things that excite you, you may see things placement with his aunt and uncle, the that make you nervous, or you may see things Dursleys, was less than ideal. While there, As demonstrated above, one can achieve you simply don't understand. It may be like Harry's room under the stairs certainly did not what seems impossible even without a entering a whole new world. Some questions meet licensing requirements for adequate magic wand! With the right tricks of the you may find helpful to think about when square footage per child; his aunt and uncle trade, the process for families of children visiting sites include: were less than nurturing; and Harry's with special needs can go smoothly. First, developmental needs as a young wizard were when looking for a program, have in Does the program look clean, safe and ignored. Harry did not have a choice in that mind what your needs are logistically. accessible? placement, but when you do choose, it is There is not much reason to invest a lot - important to check out every aspect of the of time exploring a program that doesn't Is the ratio of adults to children environment carefully. open early enough or is cost prohibitive. adequate? One of the first questions you ask should Sometimes locating child care that meets be, "Do you have openings for a year Do toys and materials support different your family's needs may feel like you're old?" This not only is a time saver, but types of learning? trying to gain access to Platform 9 3/4, also when looking for care for a child i.e. through a brick wall!For Harry and with disabilities, this helps you to define all of the young wizards striving to reach whether a program is truly open to caring school via the Hogwarts Express, access for children of all abilities. could only be gained by walking quickly and purposefully through the barrier wall Many parents have stated that when they Preparing the childcare provider will between train platforms 9 and 10. The begin the conversation with caregivers likely require specific training and Maneuver required trust and an unwaver- describing their child's needs they preparation. Yoillr child may need ing positive belief that you would suddenly are told about waiting lists and picture schedules, behavior plans. or succeed. lack of openings for the age group they adaptive equipment. Remember, what seems natural or ordinary to a require. They cannot tell if the lists really Without those key strategies, passed onto family member, may once have exist for all children. Ask about openings seemed unusual or even scary.It is him from the parents of other young first. Once you determine there is an important to understand the wizards, Harry would have surely opening, it is important for child care provider's level of understanding and slammed into the wall, his greatest fear. providers to first get to know you and comfort. Meet child care providers The Dursleys' laughed at Harry for even your child. Remember, your child is a lot where they are, and help them to daring to believe that a place like Plat- more like typically developing children feel comfortable. form 9 3/4 existed. Like Harry, parents than he or she is different. Model this of young children with disabilities learn belief for the caregivers.It is recom- mended that you have your questions PAGE 24 0 USN COMMONS, NOVAS. 2001 44,', your "gut feelings" or "parental intuition" to though that is not practical in our world, serve you well in making the final decision. there are some important lessons to learn from how communication occurred in the Locating child care is only one ingredient wizarding world. The owls came at regular in brewing a successful situation. Once a intervals, daily in fact, to present information. Continued from page 24 program has been chosen, there are some They came with gifts and warnings. They critical elements to ensuring success. carried critical information from one world to First and foremost, preparation is crucial. the other. Every wizard understood and Does the environment show respect Think about Harry's Quidditch team valued their contribution and role. for different cultures, languages, values, not only did they need to secure the and traditions? proper equipment, but they required Communication between home and child training.Quidditch, a game with flying care needs to be clear, understandable Are staff actively involved in every brooms, is not well known to the average and occur regularly. Try to always have aspect of the child's day? person. something positive to say and avoid jargon. Although you don't want do deny Do the staff seem flexible about Preparing the childcare provider will concerns, present them in a strength- adapting activities, environments and likely require specific training and based manner, and try to avoid "howlers" curriculum? preparation. While they won't need a or screeching at all costs! golden snitch or a nimbus 2000 broom Are you comfortable with the way (the top of the line flying broom), they When all the ingredients are well mixed, staff discipline the children? may need picture schedules, or behavior your child will be comfortable, and most plans, special scissors or a special chair. likely will build lifelong friendships Do caregivers seem to enjoy and Remember, what seems natural or much like Harry, Ron, and Hermoine. respect the children? ordinary to a family member, may once Just remember as is often true at have seemed unusual or even scary.It is Hogwarts the unexpected can and will Are the children given the chance to important to understand the provider's happen.Like the stairs in the castle make choices? level of understanding and comfort. which suddenly change directions on the Meet child care providers where they are,wizards, requiring them to think quickly Are the children engaged in activities that and help them to feel comfortable. and devise an alternate route, you may suit their age and stage of development? find various changes from time to time in One of the best ways to do this is to your .child care placement. Your child's Do the children appear to be happy provide them with information. Think needs will also change over time, which and enjoying themselves? about all aspects of your child's day, whatmakes communication, ongoing training comforts him or her, what to do in and the spirit of teamwork essential. In emergencies, your child's favorite and the case of difficulties, you or someone least favorite things.If available,share on the team will need to be like assessment information, allow child care Hermoine. In the climax of the story providers to visit your home or another when the devil's snare was strangling place your child may work or play Ron, Hermoine was able to relax take throughout his or her day. a deep breath and remember all she had learned. You can too. Find out how your new caregivers learn best. Do they do better with written materials, demonstration, being told? Allow time for practice, time to transi- Once you've narrowed your search down to tion and become comfortable, not only two or three settings, it's time to make a for your child and caregiver, but for choice. When a young wizard arrived at Peggy Florio is Director of Project ACT yourself as a parent as well. If there are in Towson, Maryland. For additional Hogwarts, a magical hat was placed on his resources that can offer additional resources on locating inclusive childcare, head. This magical hat helped determine in supports such as Project ACT (All which dormitory each wizard would reside (it contact Project ACT, 300 E. Joppa Road Children Together) in Maryland, utilize Suite 1103, Towson, MD 21286 Phone: was the Gryffindor for Harry). You are the them to help facilitate a successful keeper of the sorting hat for your child. You (410) 828-7700 Fax: (410) 828-7708, or situation. visit ACT's website at know the information you need, you must Effective communication between home and carefully weigh your options and then trust www.abilitiesnetwork.org school at Hogwarts happened via owls, and PAGE 25 NISH COMMONS,.NOILIDEC. 2001 PERSONNEL PREPARATION Early Childhood Intervention National Black Child Development Institute. Personnel Preparation: (1999). Resources to build diverse leadership. The Story Behind the Washington, DC: NBCDI. Backward Mapping for Future Name Change That Never Happened Planning Odom, S. (1998, December). Early Child- Continued from page 5 Continued from page 22 hood Research Institute on Inclusion: Synthesis points. Presentation at the Frank Porter Graham Child Development Center, Chapel Hill, NC. families of children with disabilities and inclusive early childhood settings. In M. J. Guralnick Ponterotto, J. G. (1996). Multicultural When we discover that the young adult (Ed.), Early childhood inclusion focus on change. counseling in the twenty-first century. The with autism is in fact, at least as bright, Counseling Psychologist, 24(2), 259-268. Baltimore: Brookes. maybe even more so than his teacher, does Rooney, R. (1995, May). Implementation of he no longer qualify as having a severe Fullan, M. (1993). Change forces: Probing the disability? The perception of intellectual or depths of educational reform. New York: Falmer preservice interdisciplinary personnel cognitive ability has been closely tied with a Press. preparation programs for early intervention. Paper presented at the annual Comprehen- person's ability to communicate in Hains, A. H., Lynch, E. W., & Winton, P. J. sive System for Personnel Development conventional ways. When a person who is (1999). Moving towards cross-cultural compe- (CSPD) meeting, Washington, DC. perceived as having severe cognitive tence in lifelong personnel development: A disabilities is finally given the sophisticated review of the literature. Champaign, IL: CLAS U.S. Department of Education, Office of communication device to which she is Special Programs. (1998). OSEP discretion- Project. entitled and begins to advocate for herself, ary projects: Personnel preparation. Reston, VA: The Council for Exceptional Children. \ does she no longer have a severe disability? Hilton/Early Head Start Training Program. When people who have "graduated" from (1999). The 1999 Year End Continuous Improvement Evaluation Report. Rohnert U.S. Department of Education, National being advocated for, because the perception Park, CA: Sonoma State University, Center for Education Statistics. (1999). by some has been that they have a severe California Institute on Human Services. Teacher quality: A report on the preparation disability, to being self-advocates (another and qualifications of public school teachers, label by the way!), does TASH no longer Hurtado, S., Milem, J., Clayton-Pedersen, NCES 1999-080. Washington, DC: NCES. advocate for their continued self-determi- A., & Allen, W. (1999). Enacting diverse nation? Can, in fact, a person who has a Wesley, P. W., & Buysse, V. (1997). Commu- learning environments: Improving the severe disability one day not have a severe climate for racial/ ethnic diversity in higher nity-based approaches to personnel preparation. In P. J. Winton, J. A. disability the next, or can a person have a education (ASHE-ERIC Higher Education severe disability in one environment and Report, 26[8]). Washington, DC: The McCollum, & C. Catlett (Eds.), Reforming George Washington University, Graduate personnel preparation in early intervention not in another because he /she has been School of Education and Human Develop- (pp. 53-80). Baltimore: Brookes. characterized based solely on perception? ment. Winton, P. (1994). Early intervention The terminology of "severe disabilities" Individuals with Disabilities Education Act personnel preparation: The past guides the tends to be professionally oriented. It has Amendments of 1997, P.L. 105-17, 20 U.S.C. future. Early Childhood Report, 5(5), 4-6. been and currently is used to describe a [sections] 1400 et. seq. field of study in teacher education as well as Winton, P. (1996). A model for supporting other training and technical assistance Jarvis, V. T., & Rodriquez, P. (1998). higher education faculty in their early initiatives. This generates another concern Fostering awareness, implementation, intervention personnel preparation roles. that if we do not reflect "severe disabilities" commitment, and advocacy. Raleigh: North Infants and Young Children, 8(3), 56-67. Carolina Division of Mental Health, in the name, it will make it difficult for Developmental Disabilities and Substance Winton, P., & Crais, E. (1996). Moving university faculty and students as well as Abuse Services. towards a family-centered approach. In P. educators and service providers to access McWilliam, P. Winton, & E. Crais (Eds.), TASH and JASH through an online search McCollum, J. A., & Yates, T. J. (1994). Dyad Practical strategies for family centered as an example. The committee discussed intervention (pp. 155-193). San Diego, CA: as focus, triad as means: A family-oriented whether parents of a child with a severe Singular. approach to supporting parent-child disability would fail to stumble across our interactions. Infants and Young Children, web site -- or do parents really think of 6(4), 54-63. Winton, P., McCollum, J., & Catlett, C. (1997). Reforming personnel preparation in their sons and daughters as having what Moore, E. K. (1993). Paths to African American early intervention: Issues, models, and some professionals would call a "severe leadership positions in early childhood educa- practical strategies. Baltimore: Brookes. disability?" tion: Constraints and opportunities. Washing- ton, DC: NBCDI. Continued on page 27 r. PAGE 264 TASH COMMONS, NOVJDEC. 2001 FROM THE TASH EXECUTIVE BOARD The Story Behind the with disabilities are educated, are working, I know that I have not done justice to all of N ame Change That and are living, we have begun to change the the issues behind the name change because of N ever Happened descriptive language from focusing on the their complexity, but hopefully I have person as the source of the disability to answered questions about how we got to this Continued from page 26 focusing on the environment as being the point. In closing, it is not about what TASH disabling or limiting condition. does for you the professional, for you the self- Finally, does the term "severe disability" mean advocate, for you the parent. It is about what anything to the lay public who might see it in Another issue that was raised from time to each of you brings to the organization that the title of an organization? My personal time during this process was about the will ensure that TASH fulfills its mission. experience is that people often have to ask, necessity of having a focus on research in this When you read the new mission statement, "Who are you talking about?" Having to ask organization's mission. In the end, name please think of the contributions you bring to or answer this kind of question ultimately change committee members unilaterally the organization and about the daily impact defeats one purpose of having the descriptive agreed that without solid research into the you have now and can have in the future term in the title and again, what we find is efficacy of good practice we have no tools to toward making the mission ofTASH a reality. that there is no clear answer to who fits the give to the attorneys who are fighting every definition and who doesn't. These issues day in the courts for the rights of people with represent only part of the debate about disabilities to inclusive education, supported terminology and certainly I have only work, and life in the community. provided a simplistic view of the broader issue. Without the research we would have no ammunition to give to parents of young There was however, a discussion that began at children about to enter the system of the conference by one of our recognized segregation. Without the research that the leaders in the field of "severe disabilities" aboutuniversity faculty, students, and other disability terminology needing to reflect the professionals conduct with and without conditions of inaccessible and unaccommo- government support, there would be no dating social and physical environments as standard of what constitutes best practice and opposed to reflecting the person as having an no proof that any of what we advocate for can inherent "problem." The next few years will be realized. Without the research into be interesting! communication, we would not know how best to promote self-determination. And Attention The Mission without research, we could never get past the I don't mean to give the impression that the door with our legislators who demand proof TASH name change process was pure controversy. of everything. Trying to convince people to do The phone meetings, face-to-face dialogs, and something because it is the right thing to do is Members! e-mail discussions around TASH's mission and not enough -- we have to prove that our purpose were the most revealing about where progressive ideas work and result in better the diversity of thought ends and where the lives for people with disabilities and their The Paraeducator Interest Group is unity of this organization begins. Although families. seeking contact information from we struggled somewhat with how to word the members who are interested in issues mission statement, the focus was clear and And in the End related to the employment, deployment, supported by all with whom I spoke regard- Now that the name is back to being just training and support needs of less of what their position on what the name "TASH," I find it ironic how well the name paraeducators. of the organization should be. All participantsmight fit at this time in the life of our agreed that we are in the business of ensuring organization. There is no language in the title If you are interested in issues related to that when we say, "All means all," that the no "severe," no "disability," no "social paraeducators, please send an e-mail to focus is on those individuals who are continu- justice" or "human rights" or "research"no Nancy Weiss at the TASH central office ously excluded from the "all." Our mission is "adults" or children." In short, nothing that Name: Address: City/State/Zip: Telephone: Fax: ( ) E-mail: Is the above your work address home address other Please Chech Appropriate Categories () Educator/Teacher (K-12) ) Related Services Provider (not more than three): () Government Personnel ) Self-Advocate/Person w/ Disability () Administrator/Adult Services () Legal Services Provider ) Social Worker () Administrator/Education () Occupational/Physical Therapist ) Speech/Language Pathologist () Administrator/Other () Parent/Family Member ) Special Education Teacher () Adult Service Provider/Staff () Personal Assistant ) Special Education/Support Specialist ( ) Advocate/Friend () Professional/Public Policy Advocate ) Staff Development/Trainer ( ) Behavioral Specialist () Professor/Instructor-College/University ) Student C) Case Manager () Psychologist ) Supported Employment () Early Childhood Services () Regular Education Teacher/Administrator ) Other Moving? Please notify TASH of your new address. 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