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Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 Volume 37 w Issue 1 w Winter 2011

More Than “Being There:” Promoting Social Connections Through Inclusion

In This Issue Two Friends Talking About Inclusion w Page 15 Research Addressing Peer Relationships and Supports: What We Know and Where We Might Go w Page 20 High School Peer Buddy Programs: Supporting Students with Intellectual Disabilities and Autism w Page 24 Embracing Our Interdependence: The Importance of Learning Together w Page 29

2011 TASH Conference Preview Pages 41-43 Be a TASH Intern Page 48


Save the Date

www.tash.org/2011TASH

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The 2011 TASH Conference is the place to learn, share and grow with others in the disability community. We’re heading to the city that has played a critical role in social justice movements in our nation’s history.

No Excuses: Creating Opportunities in Challenging Times The 2011 TASH Conference theme reflects the spirit of the disability movement today. There are many challenges ahead, but there is no excuse for progress. Join us as we meet these challenges and create a pathway to a positive future for persons with disabilities.

36th Annual TASH Conference November 30-December 3, 2011 Atlanta, Georgia Visit TASH.org to find additional conference details, and be sure to mark your calendars.

www.tash.org/2011TASH


Connections Editor

Charles Dukes Editorial Committee

Deborah Taub

Volume 37 w Issue 1 w Winter 2011

Table of Contents

Elizabeth Fullerton Linda Lengyl Pamela Lamar-Dukes TASH Board of Directors

Carol Quirk, President David L. Westling, Vice President, Chair, Membership Committee Diane Ryndak, Secretary Barbara Loescher, Ex Officio, Treasurer, Co-Chair, Diversity Committee Ralph Edwards, Ex Officio, Co-Chair, Diversity Committee Jean Trainor, Chair, Development Committee Shirley Rodriguez, Ex Officio, Chair, Chapter Leadership Committee Michael Callahan, Chair, Employment Committee Mary Morningstar, Chair, Education Committee Gail Fanjoy, Chair, Community Living Committee Sharon Lohrmann, Chair, Conference and Training Committees Lisa Mills, Ex Officio, Co-Chair, Public Policy Committee Curtina Moreland-Young Ari Ne’eman

4 Letters from TASH 8 Articles from Our Contributors 8 Two Friends Talking About Inclusion, Micah Fialka-Feldman with Alex Cherup 10 Research Addressing Peer Relationships and Supports: What We Know and Where We Might Go, Erik W. Carter 16 Three Building Blocks for Designing and Implementing Social Supports for Students Who use ACC, Pam Hunt, Kathy Doering and Julie Maier 21 High School Peer Buddy Programs: Supporting Students with Intellectual Disabilities and Autism, Carolyn Hughes, Erik W. Carter and Joseph C. Cosgriff 26 Natural Supports: A Delicate Balancing Act, Michael Callahan 31 Attending College Naturally: The Use of Natural Supports in Western Carolina University’s University Participant Program, Kelly R. Kelley and David L. Westling 34 Embracing Our Interdependence: The Importance of Learning Together, Barbara McKenzie

Betty Williams

37 Special Feature: 2010 TASH Conference In Review

Micah Fialka-Feldman

41 Special Feature: 2011 TASH Conference Preview

Bill Smith Lewis Jackson Martin Agran, Ex Officio Charles Dukes, Ex Officio SungHo Park, Ex Officio Pat Amos, Ex Officio

44 Special Feature: Cultural Competency Corner 46 Association News

Related Website Content

Contact Us

1001 Connecticut Ave., NW, Suite 235 Washington, DC 20036 Phone: (202) 540-9020 w Fax: (202) 540-9019 info@tash.org w www.tash.org Barbara Trader, Executive Director btrader@tash.org Jonathan Riethmaier, Advocacy Communications Manager jriethmaier@tash.org Haley Kimmet, Program Manager hkimmet@tash.org To request an alternative format of TASH Connections call (202) 540-9020. Copyright© TASH 2011. No reprints without permission. Permission requests can be faxed to (202) 540-9019.

Inclusive Education Section on TASH.org http://tash.org/advocacy-issues/inclusive-education/

TASH Inclusive Education Resolutions Quality Inclusive Education Post Secondary Education Educating Young Children with Significant Disabilities Paraeducator Employment, Roles, Preparation and Supervision Teacher Education Related Services Preparation of Related Services Personnel for Work in Educational Settings


A Letter from Our Board President

Dear TASH members, At a recent national forum on issues affecting people with developmental disabilities, the word “loneliness” was repeated by more than one speaker. Despite experiences in general education settings, jobs in the community, and homes in neighborhoods, a remaining challenge is having authentic personal relationships, meaningful and respectful interactions within those community settings, and a social life outside of the work day. Everyone wants friends who are not family members to whom we would turn to discuss a problem, share a movie, or simply feel connected. For children, young adults, and older people with developmental disabilities, these relationships don’t come easily, and if social connections are to happen, they need to be supported by a family member or service provider. Being “in” school, work, and community activities is insufficient. To be “included” and a full participant in those settings and activities, each person must be considered a valuable member and have interactions that are respectful and reciprocal.

To what extent are: w Our schools sharing information with the whole student

body about disability issues and offering support to nondisabled peers in order to promote positive peer interactions?

w Our colleges and

universities creating opportunities for class participation and learning with fellow students as supports rather than paid staff? What family member would not be thrilled to know that their child or Carol Quirk, sibling has someone who Board President of TASH truly cares for them when they leave home and will be there when needed: as a mentor, an advocate, and a friend. Who wouldn’t be more at ease knowing that our loved one was NOT lonely, but had rich social connections. But of course, as fellow TASH members, you know this, you live this, and you share these concerns. I will use the articles in this issue of Connections to share with some colleagues who are struggling with a vision for the full school/work/community participation of individuals with significant support needs. And I want to thank you: for continuing to care and fighting for true inclusion in all aspects of life.

w Our teachers modeling and facilitating peer supports within

classes to enable academic participation? w Our workplaces not only hiring people with disabilities, but also

creating environments that encourage co-workers to appropriately communicate with and enable productive work outcomes?

Carol Quirk

TASH would like to congratulate Carol Quirk on her appointment to President Obama’s Committee for Individuals with Intellectual Disabilities! Carol was selected in May for her many contributions to the field of intellectual disability. The committee advises the President and the secretary of Health and Human Services on quality of life issues for people with intellectual disabilities. We know Carol will be a strong advocate in this position.

Way to go Carol!

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A Letter from Our Executive Director

The Making of Champions — Why Social Relationships Matter When I was a young recreation therapist, I had the pleasure of meeting a young man, about 15-years old, who enjoyed swimming at a neighborhood pool. His name was Allen, and he told me he wanted to go to the Olympics just like his friend, Tim. (The names are fictional, the story is not.) I didn’t know Allen well at the time, and I was concerned about disappointing him. I carefully explained that the event he was training for was the Special Olympics. He cleared up my misunderstanding right away. He knew the difference, but was using “shorthand” terminology. As it happens, Allen and Tim’s dreams were real—and each was destined for greatness in Olympic competition.

Allen wanted to improve his stroke, and Tim offered tips. They both encouraged each Barbara Trader, other to aim high. Over a period Executive Director of of years, Billy and Allen had an TASH enduring friendship, while Tim and Allen had the great gift of being teammates who inspired one another. Tim and Allen would later have the opportunity to represent their country at international events—Tim, the Olympics, and Allen, the Special Olympics.

The story of Allen and Tim illustrates the power of social capital, and one family’s wisdom in listening to their son’s dreams. Allen, who had Down syndrome, at an early age developed a love for all things related to water. As he grew older, Allen learned to swim at a pool that was home to an area swim team. The opportunity to swim and train in this facility came because his parents simply asked and the pool’s owners, a family with two boys, were willing to give the arrangement a try. The pool owners had one son who showed amazing capability as a swimmer, and another son who struggled in school and yearned for direction. Their willingness to include Allen was serendipitous in ways no one could have predicted at the time.

The special gift for swimming that Tim and Allen shared was never questioned. What was not expected, though, is how much their presence would impact who the other person would become. This is the very nature of social relationships that shapes lives for those of us lucky to live supported by community—the unpredictable nature of how much our lives can be impacted (and most often enriched) by those around us. That so many people have so few people around them is what drives our work. Too often, young men like Allen never have the opportunity to live out their dreams. This could happen for a variety of reasons, but it does happen frequently when people are kept in segregated situations and lack family members who are willing and able to ask for something more. When we consider the limits to vibrant community life when people are missing by virtue of their isolation, including everyone becomes an even more urgent calling.

A relationship soon blossomed between Allen and the pool owners’ youngest son, Billy. Billy felt good around Allen. He was able to stay positive, relaxed and could be himself. At first, Billy showed Allen around the facility and offered reminders about what Allen was supposed to practice in the pool. After a while, the two began to share jokes and stories. Eventually, their friendship took shape outside of the pool. As Billy and Allen became friends, Allen’s swimming talent was gaining recognition. He loved to practice, and worked hard. This hard work paid off when he became a member of one of the teams. He didn’t always win, but he was competitive in age group races, and was doing what he loved. Tim, the older of the two brothers, and a tremendous swimmer himself, started to view Allen in a different light than just his little brother’s friend. What evolved was a deeply meaningful co-mentorship between Tim and Allen. Tim was sometimes discouraged, but could be inspired by Allen’s work ethic and determination to do his best.

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There has never been a more critical time to embrace the TASH mission as an urgent calling. We need your help. Encourage someone to join TASH. Come to the TASH conference, share your stories and re-energize your passions. And definitely, make sure you let your elected officials know where you stand on sheltered workshops, restraints and seclusion and cut backs to Medicaid for community supports. Changing these practices that isolate people will take all of our effort—we are counting on you! In solidarity,

Barb Trader, Executive Director

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A Letter from Our Editor TASH has and will, of course. continue to share amazing story after amazing story detailing the ins and outs of inclusive practices. The spirit of inclusion remains strong, and there is every reason to believe that more and more people will embrace the idea that all means all and every child and adult with varying abilities will have the opportunity to be fully included. This is generally the easy part—promoting the basic idea underlying inclusion and inclusive practices. Clearly, many embrace the basic idea, but of course the challenge is in the details. In spite of the numerous successes, many doubt the feasibility of applying these same techniques within schools or with people with different needs. In short, it’s the “nuts and bolts” of inclusive practices that continue to impede progress, at least in some cases. Whether these nuts and bolts are termed “tactics,” “mechanisms,” or “techniques,” the point here is that belief in an inclusive environment is only a portion of the task—belief in inclusive practices requires a deep familiarity with those practices that have a likelihood of success. In this issue of

TASH Connections, guest editor Mary Morningstar has brought together a collection of authors who understand both the spirit and mechanics of inclusive practices. Readers will enjoy stories about post-secondary programs, high-school experiences, first-hand accounts of life in college, and even some scholarly work on Charles Dukes, Editor, making inclusion a reality. The TASH Connections “work” of inclusive practices is far from done, but there are a number of reasons to feel optimistic about the current state of things.

Charles Dukes, Editor, TASH Connections

A Letter from Our Guest Editor

What’s so Important about Social Relationships and Natural Supports? In this day and age of evidence-based practices, academic interventions and policies promoting programs and services, it is important to take a moment to consider essential elements of what matters most in the lives of children and adults with significant disabilities, their families, and for that matter, all of us. The health, wellbeing and quality of life for individuals with significant disabilities, at its core, is dependent upon social capital—or the longstanding relationships we have with those in our community (Condeluci, 2008). Students in school, regardless of whether they have a disability or not, perform better academically and are more likely to remain in school when socially, psychologically and academically engaged in school (Kennelly, & Monrad, 2007; Sinclair, Christenson, & Thurlow, 2005). As students make the transition from school to adult life, success is often predicated on the social networks available to them—to find a job, establish a meaningful career and maintain a high quality life. Yet for students of all ages and adults with significant disabilities, we still find that a prevailing attitude among educators is to focus on academic and functional skills as a precursor to success, rather than considering the importance of facilitating social networks to sustain youth post high school. Disability systems continue

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to maintain an overreliance on paid professionals to support individuals, instead of promoting the “other social Mary E. Morningstar, security” so aptly described by Ann and Guest Editor, Rud Turnbull for their son Jay’s adult TASH Connections life: “Jay’s greatest social security was not the government money, but it was his authentic relationships with so many people who cared about him.” Or as Diane and Phil Ferguson articulated for their son, “The more hands there to catch him when he falls the better. We firmly believe that the more deeply embedded Ian is in the life of his neighborhood, workplace and the city in general, the more people there will be who will notice if he is not there and who will work to keep him there as a member of the community” (Ferguson & Ferguson, 2000). Clearly, inclusion is more than simply “being there.” Efforts to create inclusive environments require going beyond the moniker “because it’s the right thing to do,” to requiring proficiency in the practices that make inclusion a reality. In this issue of TASH Connections, we focus on the social and natural supports used to generate fully inclusive lives. The picture of inclusion is incomplete without supporting mechanisms, and in this issue,

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A Letter from Our Guest Editor continued from page 6

social relationships and natural supports are richly described in each of the seven contributions. Micah Fialka-Feldman with Alex Cherup offer a first-hand view of the importance of developing friendships and social supports on a college campus. Micah opens his article by describing his accomplishments in college, but he goes on to describe the most important part of his college experience, his connection to his friends and his continued connection, even after graduation. Most significantly, his supports and relationships were not one-sided, and Alex offers his perspective on how meeting Micah changed his life as well. Next, Erik Carter offers a scholarly review of what we know about supporting relationships in educational settings in his synthesis of research. He offers four predominant themes: (a) promoting relationships and academic learning are not an either/ or proposition; (b) placing students in general education does not automatically lead to meaningful inclusion; (c) relying on professional supports (i.e., paraprofessionals) may inadvertently create barriers to inclusion; and (d) promoting social engagement in schools through various interventions offers a “rich menu” of strategies for teachers. Finally, he provides compelling arguments for what we still need to learn about facilitating social interactions and supports in inclusive settings. Pam Hunt, Kathy Doering, and Julie Maier provide practitionerspecific recommendations for facilitating positive social relationships in schools among students with significant disabilities who use Augmentative and Alternative Communication (AAC) and peers without disabilities. These authors describe three building blocks of social supports that include: (a) providing information to peers in a variety of formats (e.g., ability awareness presentations, friendship groups, partner groups); (b) using highly engaging interactive media and materials that promote sustained interactions; and (c) arranging interactive activities and facilitating positive interactions. This article offers educational team members specific strategies to ensure high quality engagement among students that can easily be used across all educational settings, grades and students. Carolyn Hughes and her colleagues describe effective practices used to support high school peer buddy programs. Barriers to social engagement and relationships within high school settings are evident both for students in general educational and special education settings. Fortunately, barriers aren’t insurmountable and this is clear after reading the description of the Peer Buddy Program in Nashville, Tenn., high schools. The program is intended to ensure that all students in the school feel accepted and included. The next two articles focus on models of facilitating natural supports in employment and postsecondary settings for individuals with intellectual disabilities and how to link paid and unpaid supports. Michael Callahan explains the Seven Phase Sequence to

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maximize natural supports by first identifying and utilizing natural processes found in employment settings. Only then, are additional and individualized supports considered and delivered in as natural a manner possible. Kelly R. Kelley and David L. Westling describe a model for supporting young adults with intellectual disabilities participating in the Western Carolina University’s University Participant (UP) program. Participants in the UP program live and work on campus, enroll in coursework and are immersed in campus life. Participants are supported by college students (both paid and unpaid) resulting in multiple benefits. Students with disabilities on campus convey to all on campus that all youth are natural members of the university community, and that “a little support is not necessarily a bad thing.” The final article in this issue offers a parent’s perspective on the importance of embracing a level of interdependence that leads to the transformation of schools into inclusive learning communities. Barbara McKenzie describes Erin, her daughter, and her experiences from elementary school through high school and the impact these experiences had on Erin’s learning when she was “sitting in the middle of the class and observing how other students participated.” Barbara relates the profound impact expanding Erin’s social network had, not only for Erin, but for her friends and classmates as well. Taken as a whole, the articles in this issue of Connections offer readers an interesting mix from across the lifespan highlighting both research and rich stories about facilitating natural supports leading to high levels of social engagement. The specific strategies described provide proven methods for increasing the social fabric of inclusive environments, whether that be in school, on the job or in the community. Whether paid or unpaid, facilitating supports and building social networks is one of the most important parts of any professional’s job. Mary E. Morningstar Guest Editor, TASH Connections

References Condeluci, A. (2008) Together is better. Wake Forest, NC, Lash Press. Ferguson, P. M., & Ferguson, D. L. (2000). The promise of adulthood. In M. E. Snell & F. Brown (Eds.), Instruction of students with severe disabilities (5th ed.) (pp. 629-656). Upper Saddle River, NJ: PrentinceHall. Kennelly, L., & Monrad, M. (2007, October). Approaches to dropout prevention: Heeding early warning signs with appropriate Interventions. Washington, DC: National High School Center at the American Institutes for Research. Sinclair, M. F., Christenson, S. L., & Thurlow, M .L. (2005). Promoting school completion of urban secondary youth with emotional or behavioral disabilities. Exceptional Children, 71(4), 465–482.

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Articles from Our Contributors Two Friends Talking About Inclusion Micah Fialka-Feldman with Alex Cherup

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ot many people, whether they have a disability or not, are able to make great friendships in college. My experience at Oakland University, however, gave me wonderful friendships that have lasted even after I have graduated. I have accomplished many things in college, but most importantly, I have made a lot of friends that still are close to me. One of my friends, Alex Cherup, and I travel to conferences around the country and talk about our inclusive post-secondary experiences. We would like to use this article to give more details about my experiences in college and how I was able to be a student at Oakland University. To start off, I attended Oakland University from 2003 to 2010. I was a student through the OPTIONS program, which allows people with intellectual disabilities to go to the university. There were roughly nine individuals in the program when I attended Oakland University. I still had an Individual Education Plan (IEP) with my home school district, Berkley School District. While I attended Oakland University, students could remain in school until the age of 26. I picked a good state to live in! Rather than stay at my high school until I celebrated my twenty-sixth birthday, the OPTIONS program allowed me to spend these years of my life at college. During my time as a student at Oakland, I lived at home in Huntington Woods, Michigan. Every day for six years, I took the bus over 20 miles each way from my house to school. Sometimes,

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the weather was nice, and other times, the weather was way too cold for any human being. But, as a devoted student, I didn’t let the cold or snow get in the way. But, my last semester before graduation, I didn’t have to worry any more about cold white stuff. I got to live on campus, and no longer had to wake so early to ride the bus. It took a two year court battle, which I won! My goal to live in student housing was to have the full college experience. I am going to tell you about how I lived in the dorms, took college classes and participated in on-campus activities at Oakland University. I did all of these things with help from a lot of different people. This includes my great parents who helped me advocate, my friends on campus and my social supports through my community living services. All of these wonderful people helped make my college experience educational, independent, and fun! Once successfully in the dorms, I had wonderful natural supports, inside and outside of the classroom. I had friends that would help me keep my room clean, tutor me with my homework, and go with me to activities on the college campus. Two of my friends, who are both named Amanda (not all of my friends are named

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Articles from our Contributors Two Friends Talking About Inclusion continued from page 8

Amanda), would often come by my dorm room and help me when I needed it. These friends were “paid support” through my state’s regional center. I paid them every two weeks after they added up their hours and figured out how much time they spent with me. Sometimes, I jokingly said, “I was their boss.” Even though they were paid, they still are great friends and support me no matter what. In fact, the first Amanda has known me for five years!

My friend Alex, who speaks and presents with me at conferences, writes some words below about how we first met and the importance of inclusion: I met Micah because he was not afraid to challenge community. Prior to my experiences, I had no knowledge of the disability world or movement. As an ambitious and busy student, I spent my college years in constant observation. During these observations, I had noticed Micah on many occasions but had never thought much about Micah’s presence on campus as anything revolutionary or part of a movement. From my perspective, it made sense for students with disabilities to attend college; however I did not think much of the implications this may have had on the larger structure. I didn’t become involved closely with Micah until I passed by a flyer in the student union. The top of flyer, very directly, stated: “Are you willing to help a fellow student?” and was accompanied by a large picture of Micah with his contagious smile. Underneath the flyer, it read, something similar to “Micah is looking for a fellow student to spend time with on and off campus.” Although generic, I responded with a double take. I found the flyer interesting on different levels, and did not know how to initially respond. For the next day, I thought about the message: the vulnerability, the honesty, the courage to post a flyer of this nature around campus. The existential side of my mind felt a calling to respond.

Interested in another perspective on university life? Learn about Western Carolina University’s unique University Participant Program and its use of natural supports w Go to Page 16 college student, Micah knew that I would enjoy the money and found no problem in paying me. He was completely confident in using this method as one of the many techniques to meet people. Also, as a fellow college student, he knew that there is natural excitement to get an unexpected paycheck. I admire Micah’s honesty and belief in others. He challenges community in a way that enhances the word “community” to live up to its expectations. In my insulated environment, I had no idea about Micah’s story or capacity as an agent of change. By using unconventional methods, Micah finds ways to ensure that there is a connection between members of community. Micah’s insightfulness is ubiquitous in his communication with others and he is more than willing to preserve the community’s legitimacy in whatever way he can, regardless of how off the beaten path the technique may be. From one flyer, I have a life-long friend, speaker and career option. Micah was and is my job coach and provider. He helped me identify my goals, desires and strengths. He even involved me directly in a legal civil rights fight years before I will spend my first day in law school. I often say, during our presentation, that because of inclusion in a post-secondary environment, I received an additional degree in addition to my B.A.’s in philosophy and communication. I also received a Micah Fialka-Feldman degree. And that is the best accolade any college can offer.

So I did. With one phone call, my life changed. I spoke with Micah, and found a genuineness for which I could immediately relate. From there, I quickly became a social support staff, which, at first, was a difficult position for me to understand. Receiving pay for spending time with anybody for money felt odd. Micah assured me that for his program with the regional center, this was procedure. As a

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Articles from our Contributors Two Friends Talking About Inclusion continued from page 9

When on campus, my friends would take me to different events. For instance, Oakland University has a great basketball team that is becoming more and more famous nationally, and I went to games with friends and fellow dorm mates. It was fun to see my college basketball team do so great! I enjoyed the fact that I went to a school that had such a good team. Through being included, I was able to have school pride and the Golden Grizzlies (Oakland’s team) got a really proud fan! Without inclusion, I wouldn’t have been a fan of the Grizzlies. I’d be saying “Go Michigan Wolverines!” Peer tutors supported me in class, in addition to great professors. At the start of one of my classes, I would go to the front of the classroom and introduce myself. I’d say, “My name is Micah and I’m looking forward to being in your class. If anyone here would like to help me with note taking or tutoring, please let me know.” I never had a class where I did not get support from fellow students in the class. The tutors were all volunteers, and had a good time! I made sure to develop a relationship with the professor before the semester started. Before my first day of class, I would sit down with the professor and talk about the class with him or her. I would introduce the OPTIONS program, and myself. I asked about what types of assignments were given in the class and the kind of help I would need. The majority of the time, I did the assignments given to the class. Also, I usually took the tests. Sometimes, I did creative assignments. For example, in my political class, I kept track of all of the polls during the presidential race. I collected all of the poles and organized them in a folder and handed them into the teacher. As far as grades, I got written feedback about how I was doing in each class. I wouldn’t get letter grades, but I would still have the professor check my work and give me a different type of grade. I had a transcript that would show the classes I took, but without a GPA. There was one time I got the third highest grade in my communication class! I decided what classes to take after conversations with my advisor. I would look over the catalog, and my advisor would help find classes I’d like to take. It’s hard to pick a favorite class because I liked them all so much! Basically, when it came to life in the dorms and in the classroom, my friends and professors were always there for me. What a great community!

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I made sure to develop a relationship with the professor before the semester started. Before my first day of class, I would sit down with the professor and talk about the class with him or her. I would introduce the OPTIONS program, and myself. On campus, I was in many organizations. I participated in student government activities. I was a member of the Jewish Club, the Sociology Club and the St. Jude Club. I joined groups from seeing advertisements in the Student Union. I asked friends about the groups, and joined the ones that seemed the most interesting. Being a member of different clubs helped me meet other friends. I was even a member of Alpha Phi Omega. It is a service group to give back to the community. Alphi Phi Omega is a co-ed fraternity. I learned a lot about how to help people around me. I was a member of the group around five years. Living on campus made it easier to adapt my schedule to events, as the transportation was no longer a problem. I could just walk to events! Since many people drove to Oakland and did not live on campus, I was lucky to get the full student experience available when it came to extracurricular activities. I had many friends at the university. Whenever I needed any help, my friends were there. My friend Alex says that I am like a “field guide to Oakland University.” He says that I know everybody, because I like to talk to people and learn more about them. My close friends also stood by me during my long court case, and organized petitions, held rallies and spoke at university board meetings to support me living in the dorm. In fact, they still support me today with my court case! Overall, I hope many others have the opportunity to go to college like I did. Not only was it my dream come true, but also I have become much more independent in life. I did so much more in my community because of being on campus. I hope everyone who wants to attend college will have the ability to. It is a wonderful experience.

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Articles from our Contributors

Research Addressing Peer Relationships and Supports: What We Know and Where We Might Go Erik W. Carter, Vanderbilt University

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riendships and supportive relationships are at the heart of what matters most in all of our lives. Although this statement certainly does not necessitate a citation, the “force of friendship” has been affirmed in countless studies conducted across decades of social science research (Rubin, 2002; Rubin, Bukowski, & Laursen, 2009). Put simply, relationships are at the core of a good life. And this is also true for children and youth with intellectual disabilities, autism and multiple disabilities. Yet, virtually every available indicator suggests that friendships and durable peer relationships are few or fleeting for far too many students with significant disabilities. Two recent, nationally representative studies provide a striking portrait of the social lives of students receiving special education services. According to parents surveyed as part of the National Longitudinal Transition Study-2 (NTLS2; Wagner, Cadwallader, Garza, & Cameto, 2004), only 22 percent of youth with intellectual disabilities, 6 percent of youth with autism, and 14 percent of youth with multiple disabilities frequently saw friends outside of school. Nearly 42 percent of youth with intellectual disabilities, 84 percent of youth with autism, and 63 percent of youth with multiple disabilities never or rarely received phone calls from friends. And only 54 percent of youth with intellectual disabilities, 24 percent of youth with autism, and 38 percent of youth with multiple disabilities got together with friends outside of formal groups at least once per week. For younger children, the social landscape is similarly disheartening. According to parents surveyed in the Special Education Elementary Longitudinal Study (SEELS; Wagner et al., 2002), 17 percent of children with intellectual disabilities, 21 percent of children with multiple disabilities, and 32 percent of children with autism had never visited with friends during the previous year. Only 80 percent of children with intellectual disabilities, 68 percent of children with autism, and 74 percent of children with multiple disabilities had been invited to other children’s social activities during the past year. And 50 percent of children with intellectual disabilities, 81 percent of children with

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autism, and 64 percent of children with multiple disabilities rarely or never receive telephone calls from friends. These findings represent important missed opportunities for students with and without significant disabilities. Each lose the chance to get to know one another, to discover shared interests and common aspirations, to give and receive needed support, and to learn from and about someone whose life experiences may differ somewhat from their own. As future co-workers, employers, neighbors, congregation members and fellow citizens, having opportunities to develop friendships during elementary school, middle school, high school and college can have a long-term impact on the opportunities, expectations and attitudes people with severe disabilities encounter into adulthood.

Some of What We Know About Supporting Relationships Fostering friendships and supportive peer relationships has been a longstanding emphasis of both advocacy and research efforts (Brown et al., 1979; Cole & Meyer, 1991; Fisher & Meyer, 2002); I have highlighted just a few prominent themes of prior work in this area. First, promoting relationships and learning are not competing priorities. Rather, they should be considered inseparable (Jackson, Ryndak, & Wehmeyer, 2008/2009). Accessing the general curriculum also means participating in the array of interaction and collaborative learning opportunities that exist in a school. Too often, however, addressing academics and relationships within the school day is approached as an either/or proposition. Yet, studies consistently document that students with and without significant disabilities can acquire an array of social, self-determination, academic and other lifelong skills when—and because of— working together. Shared learning experiences foster relationships, relationships can enhance learning. It is not surprising, therefore, that recent school reform efforts emphasize relationships right alongside rigor and relevance as central elements of high-quality schooling (Carter & Draper, 2010). Second, there is a critical difference between “being present” and “having a presence.” Although legislative and policy initiatives have led to increases in the amount of time students with

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Educational Practices Evaluated in Intervention Studies Published Since 1990

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Student-focused practices

Brief description

Augmentative and alternative communication (AAC) use

Introducing AAC systems (e.g., pictures, communication books, electronic systems) to students with disabilities and/or providing additional training to students; peers may or may not also receive training.

Cognitive-behavioral-ecological social skills training

A training package consisting of: (a) instruction in particular social concepts; (b) affective education related to four basic emotions; and (c) social interpersonal problem solving.

Collateral skills instruction

Teaching students with disabilities other skills (e.g., game-playing, computer skills) that are not explicitly social to enhance participation in leisure or other activities.

Conversational turn-taking

Providing systematic instruction and conversational structures to facilitate balanced turntaking by both partners in conversations.

Pivotal response training

Naturalistic strategies designed to promote generalization by using multiple exemplars and incorporating a target student’s preferences.

Self-management

Teaching students with disabilities to self-manage their own social behaviors using goal setting, self-prompting, self-monitoring, self-evaluation, and related strategies.

Social stories

Individualized stories that describe a specific social situation a student with disabilities may find challenging, explain the reactions of others to the situation, and provide examples of appropriate social responses.

Social skills

Teach students with disabilities general social and communication skills (not addressed in the other practices described above).

Peer-focused practices

Brief description

Assigning roles

Assigning specific roles within activities to peers and/or students with disabilities to facilitate social interaction.

Peer awareness training

Providing activities to promote greater awareness or understanding of disabilities among peers.

Peer interaction training

Providing direct social skills training to equip peers without disabilities to become effective communication partners, interaction facilitators, and/or social-skill instructors.

Peer networks

Establishing structured social groups around a student with disabilities to promote social and communication outcomes within the classroom and/or across the school day; academic-related support is secondary or incidental.

Peer support arrangements

Arranging one or more peer(s) without disabilities to provide ongoing academic and social support to a student with disabilities while receiving ongoing feedback and assistance from adults.

Peer tutoring

Assigning a peer without disabilities to provide academic support to a student with disabilities within tutor-learner pairs; social-related support is secondary or incidental.

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severe disabilities spend among their peers in inclusive school and community contexts (McLeskey, Landers, Williamson, & Hoppey, in press), a shift in location is not automatically accompanied by frequent peer interactions, new friendships and a sense of belonging. Both qualitative studies (e.g., Schnorr, 1997; Naraian, 2010) and quantitative studies (e.g., Carter, Sisco, Brown, Brickham, & Al-Khabbaz, 2008; Carter, Moss, Hoffman, Chung, & Sisco, in press) converge on this point: students can be just as isolated in general education classrooms and clubs as they are in self-contained classrooms if thoughtful planning, instruction and supports are not provided.

classrooms. Although numerous concerns have been raised about the overreliance on one-to-one adult support (Brown, Farrington, Ziegler, Knight, & Ross, 1999; Giangreco, 2010), there remains a dearth of empirical evidence supporting the use of individually assigned paraprofessionals as an effective way to support social relationships and learning. Instead, recent studies primarily reveal a constellation of unintended consequences of relying too heavily or exclusively on adult-delivered support. If relationships really do matter, than it is essential to consider carefully whether the support models used in schools actually foster friendships and shared learning.

Third, the support models increasingly used to promote social and academic participation in inclusive classrooms, clubs and community activities may inadvertently promote neither. Giangreco, Hurley, and Suter (2009) recently summarized state-by-state data on the ratio of special education teacher fulltime equivalents (FTEs) to special education paraprofessional FTEs. In half of all states, a visitor to a school may be as or more likely to encounter a paraprofessional than a special educator. Paraprofessionals are becoming especially prominent in the school lives of students with severe disabilities, with many serving as individually assigned supports to students in inclusive

Fourth, there is much our field already knows about how best to create meaningful opportunities for students with and without severe disabilities to meet, to get to know and to interact with one another. A wide range of instructional and support strategies—individually or in combination—have been shown to substantively improve various indicators of social participation, friendships and belonging. For example, we recently completed a comprehensive review of the literature to identify intervention studies evaluating strategies for promoting social interaction among students with intellectual disabilities or autism and their peers in elementary and secondary schools (Carter, Sisco, Chung,

Educational Practices Evaluated in Intervention Studies Published Since 1990 continued from page 12

Support-focused practices

Brief description

Direct adult facilitation

Adult-provided prompts or facilitation strategies to promote social interactions between students with and without disabilities; social skill instruction is incidental.

Educational placement

Enrolling students with disabilities in general education classes with appropriate supports (e.g., active collaboration among educators, curricular adaptations and classroom modifications, individual supports).

Environmental modifications

Modifying a classroom environment to promote the academic and social participation of students with disabilities without changing educational placement.

Instructional groupings

Small-group classroom arrangements designed to promote collaborative and interdependent interactions among group members.

Interactive activities

Introducing interactive activities to promote social opportunities between students with and without disabilities.

Unified plans of support

Individualized support plans consisting of (a) regular team meetings, (b) development of supports to increase the student’s academic and social participation in instructional activities, (c) built-in accountability system, and (d) flexibility to change ineffectual supports.

Adapted from Carter, Sisco, Chung, & Stanton-Chapman (in press).

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& Stanton-Chapman, in press). Since 1990, more than 85 studies have been published, collectively addressing 20 educational practices that provide some evidence of efficacy. Practitioners have a rich menu of promising student-, peer- and support-focused intervention strategies upon which to draw.

What We Still Need to Know Despite an expanding knowledge base and many recent innovations in service delivery models, there is still much we need to know about how best to foster durable friendships and supportive peer relationships for children and youth with severe disabilities. The remainder of this article addresses recommendations for additional research focused on improving the social lives of students with significant disabilities. First, despite the steady growth in the number of studies addressing the social interactions and peer relationships of children and youth with severe disabilities, there is relatively little empirical information available to guide practitioners in determining which instructional and support strategies are likely to work best for which students in which school contexts for which social-related goals. In other words, strategies effective with students with complex communication challenges might look somewhat different from those that work best for students exhibiting challenging behavior; strategies implemented in classrooms may look somewhat different from those used at lunch, in the hallways or outside of school; and strategies for promoting communication device use include somewhat different components than those used to encourage friendships. To date, most intervention strategies have been evaluated using designs that allow one to convincingly conclude that “doing something” is better than “doing nothing.” Far fewer studies have incorporated comparative designs that provide insight in the differential impact of different strategies. Second, the short-term impact of peer-mediated interventions has been well established. For example, peer support arrangements can increase a student’s interactions with classmates, academic engagement and access to the general curriculum. Involving peers in teaching communication system use can increase a student’s social initiations, conversational turns and self-management skills. And peer network strategies can increase the number of classmates a student meets and spends time with. Much less is known, however, about the broader impact of these interventions over time and across settings. What combination of strategies is needed to set the occasion for the growth of relationships that last beyond the semester and extend outside of the classroom and school day?

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Or – to return to findings from the NLTS2 and SEELS studies referenced earlier – are students spending more time with friends, getting invited to social events and receiving more phone calls (or text messages, e-mails, tweets, etc.) because of the opportunities and supports they are provided during the school day? Third, more compelling approaches are needed for equipping and supporting practitioners to adopt evidence-based and recommended practices in their daily work with children and youth with severe disabilities (Delano, Keefe, & Perner, 2008/2009; Clark, Cushing, & Kennedy, 2004). This is particularly true when it comes to fostering social relationships. Although many well-researched approaches are available for enhancing social participation and learning in schools (e.g., beyond access model, Jorgensen, McSheehan, & Sonnenmeir, 2010; peer buddy programs, Hughes & Carter, 2008; peer support strategies, Carter, Cushing, & Kennedy, 2009), the extent to which schools are adopting elements of these models is unclear. A substantial disconnect exists between what we know works well for students and the everyday practices in many schools. Ensuring that teachers, paraprofessionals and other staff have access to educational practices that are both feasible and acceptable is an important piece of addressing this concern (Snell, 2003). At the same time, there is an enduring need for careful and closer examination of the ways we initially prepare practitioners, communicate new information back to the field and assist teachers in incorporating innovative practices into their ongoing work. As the field’s understanding of what constitutes effective pre-service training and professional development continues to evolve (Lang & Fox, 2004; Yoon, Duncan, Lee, Scarloss, & Shapley, 2007), it is imperative that special education move toward the cutting edge of new innovations in educator training and support. Fourth, the emergence of new social technologies, online communities and other ways of connecting students with one another introduces promising avenues for fostering friendships and belonging. The diverse avenues through which students initially meet and stay in touch with one another are rapidly expanding. Yet, the growing technology gap means that many students with severe disabilities are missing out on the connections that can come through these new avenues. Moreover, few peer-mediated interventions have incorporated these new technologies, leaving little guidance for practitioners and families regarding their possibilities and potential pitfalls. While we should certainly be mindful that technological connections should supplement, rather than supplant, the time students spend in the

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presence of one another, we should also capture the promise of these tools as students enter adolescence and early adulthood.

Summary Relationships really are at the core of a good life. Promoting supportive relationships and friendships should be considered

an essential outcome of educational services and supports for all students, including children and youth with severe disabilities. While there is much we already know about creating contexts in which friendships form and flourish, it also is clear that we have a long way to go before the full promise of inclusive education is a reality for students with severe disabilities in today’s schools.

References Brown, L., Branston, M., Hamre-Nietupski, S., Johnson, F., Wilcox, B., & Gruenewald, L. (1979). A rationale for comprehensive longitudinal interactions between severely handicapped students and nonhandicapped students and other citizens. AAESPH Review, 4, 3–14. Brown, L., Farrington, K., Knight, T., Ross, C., & Ziegler, M. (1999). Fewer paraprofessionals and more teachers and therapists in educational programs for students with significant disabilities. Journal of the Association for Persons with Severe Handicaps, 24, 250–253. Carter, E. W., Cushing, L. S., & Kennedy, C. H. (2009). Peer support strategies for improving all students’ social lives and learning. Baltimore, MD: Brookes. Carter,E.W., &Draper,J.(2010). Makingschoolmatter:Supportingmeaningfulsecondary experiences for adolescents who use AAC. In D. McNaughton & D. R., Buekelman (Eds.), Transition strategies for adolescents and young adults who use augmentative and alternative communication. Baltimore, MD: Brookes. Carter, E. W., Moss, C. K., Hoffman, A., Chung, Y., & Sisco, L. G. (in press). Efficacy and social validity of peer support interventions for high school students with severe disabilities. Exceptional Children. Carter, E. W., Sisco, L. G., Brown, L., Brickham, D., & Al-Khabbaz, Z. A. (2008). Peer interactions and academic engagement of youth with developmental disabilities in inclusive middle and high school classrooms. American Journal on Mental Retardation, 113, 479-494. Carter, E. W., Sisco, L. G., Chung, Y., & Stanton-Chapman, T. L. (in press). Peer interactions of students with intellectual disabilities and/or autism: A map of the intervention literature. Research and Practice for Persons with Severe Disabilities. Clark, N. M., Cushing, L. S., & Kennedy, C. H. (2004). An intensive onsite technical assistance model to promote inclusive educational practices for students with disabilities in middle and high school. Research and Practice for Persons with Severe Disabilities, 29, 253-262. Cole, D. A., & Meyer, L. H. (1991). Social integration and severe disabilities: A longitudinal analysis of child outcomes. The Journal of Special Education, 25, 340-351. doi: 10.1177/002246699102500306 Delano, M. E., Keefe, L., & Perner, D. (2008/2009). Personnel preparation: Recurring challenges and the need for action to ensure access to general education. Research and Practice for Persons with Severe Disabilities, 33-34, 232-240. Forest, M. (1991). It’s about relationships. In L.H. Meyer, C.A. Peck, & L. Brown (Eds.), Critical issues in the lives of people with severe disabilities (pp. 399–407). Baltimore, MD: Brookes. Giangreco, M. F. (2010). One-to-one paraprofessionals for students with disabilities in inclusive classrooms: Is conventional wisdom wrong? Intellectual and Developmental Disabilities, 48, 1-13. doi: 10.1352/1934-9556-48.1.1 Hughes, C., & Carter, E. W. (2008). Peer buddy programs for successful secondary school inclusion. Baltimore, MD: Brookes. Jorgensen, C. M., McSheehan, M., & Sonnenmeier, R. M. (2010). The beyond access model: Promoting membership, participation and learning for students with disabilities in general education classrooms. Baltimore, MD: Brookes. Lang, M., & Fox, L. (2004). Breaking with tradition: Providing effective professional development for instructional personnel supporting students with severe disabilities. Teacher Education and Special Education, 27, 163-173. doi: 10.1177/088840640402700207 McLeskey, J., Landers, E., Williamson, P., & Hoppey, D. (in press). Are we moving toward education students with disabilities in less restrictive settings? The Journal of Special Education. doi: 10.1177/0022466910376670 Naraian, S. (2010). “Why not have fun?”: Peers make sense of an inclusive high school program. Intellectual and Developmental Disabilities, 48, 1430. doi: 10.1352/1934-9556-48.1.14 Rubin, K.H. (2002). The friendship factor. New York, NY: Viking. Rubin, K.H., Bukowski, W., & Laursen, B. (Eds.). (2009). Handbook of peer interactions, relationships, and groups. New York, NY: Guilford. Schnorr, R. F. (1997). From enrollment to membership: “Belonging” in middle and high school classes. Journal of the Association for Persons with Severe Handicaps, 22, 1-15. Yoon, K. S., Duncan, T., Lee, S. W.-Y., Scarloss, B., & Shapley, K. (2007). Reviewing the evidence on how teacher professional development affects student achievement. Washington, DC: U.S. Department of Education, Institute of Education Sciences, National Center for Education Evaluation and Regional Assistance, Regional Educational Laboratory Southwest. Wagner, M., Cadwallader, T. W., Garza, N., & Cameto, R. (2004). Social activities of youth with disabilities. NLTS2 Data Brief, 3(1), 1-4. Wagner, M., Cadwallader, T. W., Marder, C., Newman, L., Garza, N., & Blackorby, J. (2002). The other 80% of their time: The experiences of elementary and middle school students with disabilities during their non-school hours. Menlo Park, CA: SRI International.

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Articles from our Contributors

Three Building Blocks for Designing and Implementing Social Supports for Students Who Use AAC Pam Hunt, Kathy Doering, Julie Maier, San Francisco State University

Pam Hunt is a professor and Kathy Doering and Julie Maier are instructors and fieldwork supervisors in the Department of Special Education at San Francisco State University. This article is drawn from a chapter that the authors wrote for G. Soto & C. Zangari, Practically Speaking: Language, literacy, & academic development for students with AAC needs, published in 2009 by Paul H. Brookes Publishing Company and is printed here with permission.

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riendships between students who use alternative/augmentative communication (AAC) and their schoolmates develop because students participate in educational settings that support positive social relationships among children and adolescents with and without disabilities, and because educational team members actively encourage and systematically facilitate those relationships. These conditions serve as the premise for the recommendations that we offer in this article. The social support strategies that we describe were developed and validated in educational settings that provided membership and full social participation for students who used AAC; and they were implemented by educational team members who considered the development of positive peer relationships to be a high priority educational goal. Students’ development and emotional well being throughout their school years is significantly impacted by the quality of their social relationships. Positive peer relationships and friendships provide them with nurturance, support, membership and companionship and promote their self-confidence and self-esteem (Bukowski, Newcomb, & Hartup, 1996; Janney & Snell, 2006; Ladd, 1990; Light, Arnold, & Clark, 2003; Schwartz, Staub, Peck, & Gallucci, 2006). Children who are accepted by their peers appear to develop more positive attitudes towards school and to integrate themselves into academic activities in ways that promote learning and achievement (Ladd & Kochenderfer, 1996). Child development theorists with varying perspectives (e.g., Bruner, Flavel, Piaget, and Vygotsky) have suggested that successful child-child interactions provide both a context and a mechanism for the development of interpersonal, communication and cognitive abilities.

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Several conditions have been identified as essential to the development of positive peer relationships for students with disabilities, including: (a) opportunities to be with peers with diverse abilities, backgrounds and interests; (b) desire to interact with peers and having the communicative means to do so; (c) availability of informed and motivated peers who can serve as effective communication partners; and (c) organizational, emotional and social supports to develop and maintain peer relationships (Hunt, Farron-Davis, Wrenn, Hirose-Hatae, & Goetz, 1997; Janney & Snell, 2006; Kennedy, 2002; Schwartz et al., 2006). Unfortunately, some or all of these conditions may be unavailable to students who use AAC. The majority of students with intellectual disabilities and multiple disabilities have limited opportunities to interact socially with a broad range of students because they spend the majority of their school day in special education classes (U. S. Department of Education, 2004) and

Every morning when the school children sleepily stepped off the bus and headed towards their classes, Nathan was always waiting to greet Theo. Theo would often make a comment about the bus driving away or an airplane he heard above him, and his friend would wave to the bus or look up in the sky, too. Nathan would take Theo’s hand, help him put his heavy backpack over his shoulders, and walk with him to class. Once inside their class, these two friends sought each other out during playtime or reading time to share their enjoyment of a favorite toy or to read a book together, finding familiar words on Theo’s communication device as they were reading. It was clear that these two friends would enjoy each other’s company for many years to come. —Julie Venuto, Inclusion Support Teacher

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may be further isolated from their peers by riding separate buses to school, having different recess schedules and eating lunch only with their classmates from the special education classroom. In addition students with AAC needs may not be motivated to interact socially with their peers because their earlier attempts to communicate with or be accepted by their peers were not successful (Lilienfeld & Alant, 2005). Other students who use AAC may have a desire to interact with their peers but do not have a communication system that supports social closeness and sustained reciprocal interactions (Light, Parsons, & Drager, 2002), or informed and motivated peers may not be available to engage in interactions with students who use AAC despite the desire of the students to interact with their peers. Finally, there is evidence that, even if students who use AAC have access to integrated settings through general education placement, mainstreaming or integration during lunch, recess and fieldtrips, their physical presence alone is not sufficient. Planned and systematic support of positive student-to-student interactions through the collaborative efforts of creative and knowledgeable educational team members is needed for full social participation and the development of positive relationships and friendships (Kennedy, Cushing, & Itkonen, 1997; Hunt et al., 1997; Hunt, Soto, Maier, Müller, & Goetz, 2002).

Designing and Implementing Social Supports The social support model that we suggest includes three major building blocks (Hunt, Doering, Maier, & Mintz, 2009). The first building block is information provided to peers that will assist them in developing positive social relationships with their schoolmates who use AAC. The second building block is identification and use of a variety of interactive media (such as nonverbal communication, low-tech communication boards and books, high-tech AAC devices, interactive computer activities, toys, and games) that serve as the basis for reciprocal, social interactions. The final building block is arrangement of interactive activities and implementation of facilitation strategies to promote positive social interactions across activities and settings. All three components of the social support model are implemented through the collaborative efforts of core members of the educational team; and regularly scheduled team meetings serve as the vehicle for tailoring the intervention to meet the needs of individual students and for coordinating team member activities.

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Providing Information to Peers Peers need information to assist them in developing positive social relationships with classmates who use AAC. There are a variety of approaches to use to present this information during class activities and during other social periods of the day, including ability awareness presentations, friendship groups and partner programs. During preparation and planning, the information and activities should be designed to help peers understand and appreciate: (a) diversity of abilities, languages and cultures; (b) qualities of friendship and ways to support others and ask for support; (c) the means by which an AAC user communicates with others; and (d) the purpose and use of a particular AAC device and other assistive technology and how students use them to interact and socialize with peers and engage in educational activities.

Ability awareness presentations. Providing information that increases students’ awareness of individuals with disabilities— their accomplishments, strengths, interests, competencies and educational supports—is known as ability awareness. This is a highly effective method to provide information and can be accomplished though class lessons related to the core curriculum, reading and discussing children’s literature with themes or characters related to particular disabilities or diversity issues, school-wide or grade-level ability awareness events, class meetings and small group discussion during social club meetings. Prior planning and preparation is essential to effectively implement ability awareness presentations. Initial planning should include discussions with students and their families, other members of the educational team and school administrators to assess the necessary content, potential formats and timing of these presentations. With older elementary and secondary students who use AAC devices, it can be effective and powerful to have them assist in planning and presenting this information to their peers. It is important to build in time for discussion with the students after the presentation and activities to give them a chance to ask questions and share their experiences and perspectives.

Friendship groups. Friendship groups, often called “support circles,” are another effective, as well enjoyable, venue to provide information and social opportunities to peers of students who use AAC devices. These groups are facilitated by a trained adult who utilizes a variety of activities and cooperative learning strategies to assist the supported student(s) and peers to make connections, build relationships and engage in group discussion and problem solving. Groups meet every week or two either during lunch or

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another designated non-academic period in the day. Often these groups are formed around a common interest or theme (e.g., a sign language or recess games club); however, the overriding purpose is to expand social connections and mutual support among the members of the group.

Partner programs. When students who use AAC and their peers participate in educational and social activities through structured partner programs, there are multiple incidental opportunities for educational team members to support interactions between the student and peers, model interactions, and share information and answer questions related to assistive technology, specialized equipments or educational materials the student uses. Partner programs also allow students to get to know one another better and develop deeper social relationships and establish natural supports across school settings. At the elementary-school level the focal student may have a “partner-for-the-day” who sits by him or her and assists with academic materials or activities, a recess or lunch partner who joins and plays with the student during social periods, or a classmate who is asked by the teacher to serve as a work partner during a class activity. At the secondary level, “peer buddies” or peer tutors might help their partners who use AAC to be included during general education class activities and in the extracurricular activities that occur in a typical middle school or high school day.

Identification and Use of Interactive Media A variety of interactive media—such as nonverbal communication, low-tech communication boards, hightech AAC devices, conversation books, interactive computer activities, interactive toy play, and games—can be used across ages, cognitive differences and communication ability to support sustained interactions between students who use AAC and their peers. Nonverbal behaviors—including facial expressions (e.g., smiling and frowning), gestures (e.g., reaching, touching, pointing, waving, clapping or “high five”), body movements (e.g., nodding, orienting toward a communication partner), and vocalizations —can be used by students to initiate social interactions, make comments, express desires or concerns, ask questions and engage in a sustained, “conversational” exchange. When educational team members help peers understand the intent of the message and how to respond accordingly, the student’s initiation is reinforced, and, therefore, more likely to occur again; and peers begin to develop sensitivity to the

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nonverbal social initiations of their schoolmates and the ability to accurately interpret the messages that they express. AAC aids, from low-tech communication boards to hightech AAC devices, can be used by students in coordination with nonverbal behaviors to initiate and participate in social interactions and achieve social closeness with their peers. Vocabulary can be incorporated that not only allow the students to participate in educational activities by making comments and asking and answering questions related to the lesson or activity, but also to share information with another student, provide assistance to and ask for assistance from peers, and compliment peers on their work. Vocabulary can also be included that supports social interactions in unstructured, social contexts by enabling the students to greet peers, comment on topics of mutual interest and engage in conversational turn-taking. Interactive toy play, games, and interactive computer activities that allow the participants to focus on each other and require turn-taking and reciprocity can also serve as media to support peer-to-peer social interactions. These activities are designed to be age appropriate and occur in natural school environments, be pleasurable for both students, and have a clear, repetitive structure that is sustainable over time. For beginning communicators who currently communicate with presymbolic behaviors, interactive toy play (for example, building a tower with blocks with a peer), simple games (rolling a ball back and forth), or cause-effect-based computer games played with a peer partner can serve as primary social connectors by supporting extended, reciprocal and balanced social interactions with peers. For students who are symbolic communicators, interactive toy play, games, and interactive computer activities can also serve as interactive media to support sustained, mutually enjoyable social interactions without the need for AAC aids.

Arranging Interactive Activities and Facilitating Positive Interactions We recommend six strategies that educational team members can use to support positive peer-to-peer interactions and the development of meaningful relationships.

Strategy 1: Developing rapport with the focal students’ peers. It is important for educational team members to develop rapport with peers by learning their names and making meaningful connections with them. The connection with peers is strengthened when special education team members expand their

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role to one that allows them to interact with and provide support to all students engaged in educational activities (e.g., by leading small group lessons or providing individual support to any student in the class who could benefit from it). When educational team members establish friendly and supportive relationships with peers, they can more effectively foster the development of positive social relationships between them and the focal students by pointing out common interests, facilitating social interactions and structuring cooperative activities, partner programs and friendship clubs.

Strategy 2: Setting up interactive activities. Partner activities and interactive, small group educational activities provide an important context for the development of positive social relationships because they offer multiple opportunities for social exchanges, turn-taking, interdependent participation to complete a task, and sharing of materials and information. Social facilitators structure the activities, prepare AAC aids and provide the adaptations and peer supports necessary to ensure that the focal students are actively engaged and interacting with other students.

Strategy 3: Sharing information during interactive activities. Interactive activities provide multiple, naturally occurring opportunities for educational team members to provide information to peers about the focal students’ communication system and the assistive technology, equipment and adaptations the students may use. Peers’ questions are answered in a straightforward, but sensitive manner; and the information given is suited to the students’ level of understanding. Information or modeling is used to help peers interpret the nonsymbolic communicative behavior of the focal student and be effective communication partners. Adult facilitators also give information to both the peer and the focal student on how to participate interdependently to accomplish a task, such as playing a game, completing an educational activity or taking turns to play a computer game. Without adequate knowledge, peers may not approach the student with disabilities, or they may take on a “helper” role rather than participating with the student in reciprocal interactions. Throughout the activity adult facilitators highlight the competency of all the students by praising their progress and successes and encouraging them to acknowledge each other’s accomplishments.

Strategy 4: Modeling positive, respectful interactions. Peers will be watching educational team members as they interact with students who use AAC. The extent to which they see respect and caring modeled by team members will affect “their own

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interpretation of being ‘different’ in the classroom not only for their peer with disabilities but also for themselves” (Swartz et al., 2006; pp. 390). In addition adult facilitators can model strategies to communicate with and support students who use AAC and ensure that the focal student is the focus of any social interaction they have with peers.

Strategy 5: Facilitating positive student-to-student interactions. Unfortunately, arranging motivating, interactive activities and providing information to peers does not guarantee that meaningful social interactions will occur naturally. Facilitation is often required, at least initially. An adult facilitator can act as a social bridge by teaching the focal students and peers how to interact with one another when necessary and by prompting interactions during naturally occurring opportunities. Although they are well intentioned, adult facilitators who provide excessive prompting, constantly hover, help too much and solve problems unilaterally interfere with student-to-student interactions. Effective social facilitators do the following: (a) support versus dominate student-to-student interactions; (b) wait to see what happens versus interrupting peers’ attempts to communicate with the focal students; (c) step away to allow peers to step in with comments, feedback and support; (d) ask focal students’ questions versus speaking for them; and (e) allow the focal students to advocate for themselves by ensuring that they have opportunities and the means to express their preferences.

Step 6: Fading adult presence. An effective social facilitator knows when to help and when to step back. In order to avoid helping too much, creating adult dependency and interfering with student-to-student social interactions, support staff must fade their physical presence. This is an important goal, and yet care must be taken that the support is not withdrawn too quickly. We recommend an approach that we call “support, fade, observe, and return”; that is social facilitators (a) provide initial support using the strategies described above, (b) fade their support and their physical presence once it becomes apparent that social interactions between students are occurring spontaneously and that the focal student is participating independently or receiving adequate support from his or her peers, c) frequently observe the activity from a distance to monitor the need for more support and return to the activity when needed to give the students additional

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One day after school Sarah was waiting for her dad to pick her up. David came out to the bus pushed by Jerome. Sarah noticed him just as her dad arrived and went over to tell David “bye” for the day. She took his hand and said, “Bye, David.” David responded with a big smile, just as her dad walked up. Sarah turned to her dad smiling proudly and said, “Dad, this is David.” “I know,” he said, also smiling. —Morgen Alwell, Special Education Teacher

information, instruction, or feedback and encouragement. When all the students are actively engaged and interacting positively with each other, the facilitator once again moves away to support others.

Conclusion For David and for Theo, friendships are essential to their emotional well being and educational progress. Yet, for many

students with significant disabilities, positive relationships and friendships with their peers are outside the realm of their educational experience either because they are separated from the social settings and activities of their peers due to educational placement decisions or architectural and attitudinal barriers or because educational team members are not providing the social supports essential to the development of positive peer relationships. Policy and administrative actions are needed to put an end to the isolation many students who use AAC experience during their school years by replacing separate educational placements with general education, classroom-based support and eliminating separate buses and bus schedules and architectural barriers that prevent access to educational and social settings and activities. In addition, educational team members must identify membership in peer networks and the development of positive social relationships and friendships with peers as high priority educational goals. Finally, educational team collaboration is needed to develop and implement cohesive and comprehensive interventions to promote and support social relationships and friendships for students who use AAC across the school years.

References Bukowski, W. M., Newcomb, A. F., & Hartup, W. W. (1996). Friendship and its significance in childhood and adolescence: Introduction and comment. In W. M. Bukowski, A. F. Newcomb, and W. W. Hartup (Eds.), The company they keep: Friendship in childhood and adolescence (pp. 1-15). Cambridge: Cambridge University Press. Hunt, P., Doering, K., Maier, J., & Mintz, E. (2009). Strategies to support the development of positive social relationships and friendships for students who use AAC. In G. Soto & C. Zangari (Eds.), Practically speaking: Language, literacy, & academic development for students with AAC needs (pp. 247-264). Baltimore: Paul H. Brookes Publishing Co. Hunt, P., Farron-Davis, F., Wrenn, M., Hirose-Hatae, A., & Goetz, L. (1997). Promoting interactive partnerships in inclusive educational settings. Journal of the Association for Persons with Severe Handicaps, 22(3), 127–137. Hunt, P., Soto, G., Maier, J., Müller, E., & Goetz, L. (2002). Collaborative teaming to support students with AAC needs in general education classrooms. Augmentative and Alternative Communication, 18, 20–35. Janney, R., & Snell, M. E. (2006). Social relationships & peer support (2nd ed.). Baltimore: Paul H. Brookes Publishing Co. Kennedy, C. H. (2002). Promoting social-communicative interactions in adolescents. In H. Goldstein, L. A. Kaczmarek, & K. M. English (Eds.), Promoting social communication: Children with developmental disabilities from birth to adolescence (pp. 307-329). Baltimore: Paul H. Brookes Publishing Co. Kennedy, C. H., Cushing, L. S., & Itkonen, T. (1997). General education participation improves the social contacts and friendship networks of students with severe disabilities. Journal of Behavioral Education, 7(2), 167-189. Ladd, G. W. (1990). Having friends, keeping friends, making friends, and being liked by peers in the classroom: Predictors of children’s early school adjustment? Child Development, 61, 1081-1100. Ladd, G. W., & Kochenderfer, B. J.(1996). Linkages between friendship and adjustment during early school transitions. In W. M. Bukowski, A. F. Newcomb, and W. W. Hartup (Eds.), The company they keep: Friendship in childhood and adolescence (pp. 1-15). Cambridge: Cambridge University Press. Light, J. C., Arnold, K. B., & Clark, E. A. (2003). Finding a place in the “social circle of life”: The development of sociorelational competence by individuals who use AAC. In J. C. Light, D. R. Beukelman, & J. Reichle (Eds.), Communicative competence for individuals who use AAC: From research to effective practice (pp. 361-400). Baltimore: Paul H. Brookes Publishing Co. Light, J. C., Parsons, A. R., & Drager, K. (2002). “There’s more to life than cookies”: Developing interactions for social closeness with beginning communicators who use AAC. In J. Reichle, D. R. Beukelman, & J. C. Light (Eds.), Exemplary practices for beginning communicators: Implications for AAC (pp. 187-218). Baltimore: Paul H. Brookes Publishing Co. Lilienfeld, M., & Alant, E. (2005). The social interaction of an adolescent who uses AAC: The evaluation of a peer-training program. Augmentative and Alternative Communication, 21(4), 278-294.

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Articles from our Contributors Three Building Blocks for Designing and Implementing Social Supports for Students Who Use AAC continued from page 21 Schwartz, I. S., Staub, D., Peck, C H., & Gallucci, C. (2006). Peer relationships. In M. E. Snell & F. Brown (Eds.), Instruction of students with severe disabilities (6th ed.; pp. 375-404). Upper Saddle River, NJ: Pearson Education, Inc. U. S. Department of Education (2004). To assure the free appropriate education of all children with disabilities: Twenty-sixth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act. Washington, DC: Author.

High School Peer Buddy Programs: Supporting Students with Intellectual Disabilities and Autism Carolyn Hughes, Erik W. Carter, and Joseph C. Cosgriff, Vanderbilt University

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nfortunately, many youth with intellectual disabilities and autism spend the majority of their school days socially isolated from their peers without disabilities, even when they are educated in the same classes or share the same lunch hours (Carter & Pesko, 2008; Hughes et al., 1999). This social isolation affects learning when students have limited access to critical educational and social activities. One reason for this social isolation is that these students characteristically have limited skills needed to socialize, form social relationships and interact with teachers and peers (Alwell & Cobb, 2009). Lack of social participation skills limit opportunities for students to interact with their peers throughout the school day, further hampering their academic learning and social development. For example, peers are less likely to initiate conversation with classmates whom they perceive as having only rudimentary or inappropriate social interaction skills (Hughes, Carter, Hughes, Bradford, & Copeland, 2002). The fact that 44 percent of students with autism and 52 percent of students with intellectual disabilities spend 60 percent or more of their day outside the general education setting (U.S. Department of Education, 2009) indicates the limited access to general education activities and peers, further restricting access to peer models of expected social interaction behavior. In addition, the academic engagement (e.g., being prepared for class, following classroom rules, responding to teachers’ questions) of high school students identified with intellectual disabilities or autism typically is lower than that of their general education

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peers. General and special education teachers participating in the National Longitudinal Transition Study-2 (NLTS-2) reported that, compared to peers without disabilities, these students participated less actively in class, responded verbally to questions less often, presented less frequently in class, and were less likely to work with a partner or group in both special education and inclusive classes (Newman, 2007). Observational studies (e.g., Carter, Hughes, Guth, & Copeland, 2005) corroborate these findings: unless specific interventions are used, active participation in general education classroom activities is minimal.

Shortcomings of Existing Practice Few interventions have been developed to address the core needs of high school students with intellectual disabilities and autism. NLTS-2 researchers reported that little is known about typically existing practices in these students’ classes other than the actual setting (i.e., general vs. special education; Newman, 2007). The few observational studies conducted in high schools indicate that strategies to increase communication and social interaction among general education students and peers with disabilities rarely occur; and that interventions to increase students’ active engagement in general education settings are similarly scarce (e.g., Carter et al., 2005; Carter, Sisco, Brown, Brickham, & Al-Khabbaz, 2008; Hughes et al., 1999; Hughes et al., 2002). Existing practice shows little evidence of efforts to promote social or classroom participation of high school students with disabilities in general or special education settings and that academic engagement (e.g., participating in small group activities) is substantially below that of general education peers. For example, Carter et al. (2005) found that across 320 observation sessions, teachers only prompted students’ social participation in less than one-third of the sessions across both general and special education

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settings. Indeed, the instructional format typically used by general education high school teachers is independent seat work or whole-class lectures (Wagner, Newman, Cameto, Levine, & Marder, 2003), neither of which promotes communication, social participation, or active classroom engagement among students (Carter et al., 2008). In addition, recent observations show that little social interaction typically occurs even among general education students: interaction only occurred 30 percent of the time (Hughes et al., 2011).

Rationale for Peer Support Programs Fortunately, research has demonstrated that identifying a “buddy” or building a cohort of typical peers who can support and encourage the involvement of high school students with intellectual disabilities throughout the school day can increase students’ academic engagement and social participation (e.g., Haring & Breen, 1992). For example, Shukla, Kennedy and Cushing (1999) found that, when compared with direct assistance from a paraprofessional, peer supports produced positive student outcomes, including more frequent and longer social interactions between students, more frequent and greater variety of peer supports provided to students with disabilities, and increased academic engagement of students with disabilities and their peers. Our own work in high schools has shown that promoting social participation through peer support has resulted in improved peer acceptance and attitudes towards students with intellectual disabilities or autism and increased student, teacher and peer satisfaction (e.g., Carter, Hughes, Copeland, & Breen, 2001; Hughes et al., 2000). We developed and implemented a peer buddy model of support for students with intellectual and related disabilities across 11 high schools in an urban school district of 75,000 students (Hughes & Carter, 2008). We have been able to demonstrate both fidelity of implementation of the peer support model (e.g., recruiting and training peers) and

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improved student outcomes, such as increased social interaction and classroom participation (Copeland et al., 2002; Hughes et al., 2002; 2004). In addition, qualitative studies indicated that peer acceptance of students with disabilities increased as a result of social participation experiences; and peers assumed a variety of roles in supporting students, such as advocating, befriending, and modeling appropriate classroom behavior (Copeland et al., 2004). Peers have been shown to be effective as instructors of social interaction skills of students with intellectual disabilities and autism (e.g., Hughes et al., 2000). Although skill development is critical, developing competence alone is not sufficient; support in the environment must also be promoted (Hughes & Carter, 2000, 2008). Therefore, peer-assisted support, such as establishing a peer support club, providing sensitivity training, and training peers in both instructional strategies and peer brokering/networking strategies is needed to promote sustained social participation and academic engagement among all students. On the other hand, peer support alone does not address developing students’ competence and self-direction (Carter et al., 2005). Therefore, combining peer support strategies with skill-training components in a peer buddy program is a powerful approach to addressing the key areas of need for students with intellectual disabilities and autism.

Peer Buddy Programs—One Solution One option for promoting inclusion and social competence of students with intellectual disabilities and autism is a peer buddy program. Peer buddy programs can take a variety of forms, and the one described here requires general education high school students to enroll in a 1-credit course designed to increase access for students with disabilities. The Metropolitan Nashville Peer Buddy Program in urban Nashville, Tenn., public schools, has become the prototype for peer interaction and inclusion programs adopted by many schools nationwide (see a complete description of the program in Hughes & Carter, 2008). Peer buddies spend at least one class period per day with their classmates with disabilities, which often leads to friendships emerging from shared experiences during lunch and extracurricular activities and outside school at students’ homes and in the community. As described by Hughes and Carter (2008), as peer buddies, students provide social and academic support to their classmates by helping them acquire skills needed to succeed in the general education environment and adapting the environment to be more welcoming, accepting, tolerant and accommodating to individual differences and needs.

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Upon enrollment in the program, peer buddies participate in a 30-minute orientation session, typically provided by a special education teacher or school counselor, that includes course expectations, disability awareness, communication strategies, suggestions for social interaction activities, and strategies for dealing with inappropriate behavior (Hughes & Carter, 2008). A peer buddy manual provides information about different disabilities, suggested activities and tips for interacting, and a journal format for recording experiences and reflections as a peer buddy. Some teachers also assign tasks, such as writing a short paper on a celebrity with a known disability or planning and implementing an inclusion activity. Support for peer buddies, such as how to interact with a nonverbal partner, is provided by a teacher or via a peer buddy club with an advisor – usually a teacher or school counselor. Activities that peer buddies typically engage in include assisting with functional academics, participating in recreational activities, promoting social interaction skills, helping with functional life and employment-related skills, and befriending their partners. In addition, peer buddies report advocating for their peers with disabilities to stop teasing by classmates, modeling acceptance of students with disabilities, and expanding interaction opportunities between general education students and peers with disabilities (Copeland et al., 2004). Peer buddies are also effective at teaching social interaction skills. For example, Hughes et al. (2000) reported that an array of peer buddies taught five students with intellectual disabilities or autism to use communication books to initiate conversational topics with general education peers. Increases in conversational initiations generalized across settings and conversational partners for all participants, each of whom also reported having met their pre-established social goals of making more friends at school. (See box for teaching steps used by peer buddies.) Benefits of peer buddy programs are experienced by teachers, general education students, and students with disabilities alike. For example, general education teachers have reported how helpful peer buddies were in inclusive classes by providing 1:1 assistance on class assignments and supporting students to actively participate in class (Copeland et al., 2002). Teachers reported that peer buddies allowed them to “experience the whole spectrum of teaching all students,” and, for the first time, they realized how students with disabilities could benefit from inclusion in general education classes. Peer buddies have reported experiencing personal growth, increasing their interpersonal skills, gaining knowledge about and raising their expectations for

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people with disabilities, and developing friendships (Copeland et al., 2004). For example, one peer buddy observed, “Sometimes J. just sits there and does his own little thing. We came to find out J. can read … It really shocked me when I found that out.” Students with disabilities participating in peer buddy programs have reported receiving assistance in academics and job training, engaging in sports and recreational activities, eating together and talking with peers, and having fun in the community or at each

Peer Buddy Social Skills Teaching Steps Rationale 1. Peer buddy explains that he or she wants to help student learn to talk to his or her friends at school. 2. Peer buddy explains that he or she is going to teach student a way to talk.

Training Sequence 3. Peer buddy models using the book. 4. Peer buddy goes through all of the pictures in the book. 5. Peer buddy looks at each picture and asks the question. 6. Peer buddy instructs student while student uses book to ask questions. 7. Student uses book to ask questions. 8. Peer buddy provides lots of verbal praise for using book. 9. Peer buddy corrects student if student misses a step. 10. Peer buddy prompts student to use book.

Reminder 11. Peer buddy reminds student to use book when student wants to talk to somebody. 12. Peer buddy reminds student to start talking and do all of the talking when student talks to his or her next friend.

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other’s houses (Hughes et al., 1999). These students also report that the greatest benefit of a peer buddy program is friendship, as illustrated in statements such as, “She introduces me to her friends and now I have a lot of friends,” and, “They are my best friends.”

Need to Improve Current Practice There are three primary reasons why a high school peer support program is an improvement over current practice. First, there are few comprehensive school-based interventions to improve the communication, social participation and academic engagement of high school students with intellectual disabilities and autism in classrooms and other school settings where students spend their day. Pull-out programs, often the prevailing practice used to teach communication skills to students with autism, have demonstrated little generalization of target skills (Gresham, Sugai, & Horner, 2001). However, peer support strategies can be implemented throughout school settings and have included multiple peers as supports, increasing the likelihood that skills will generalize across people, settings and time. Second, few peer-mediated support approaches have been introduced to high school students with intellectual disabilities and autism. The prevailing practice for supporting these students in general education classrooms is with an adult paraprofessional, which has been shown to further socially isolate students, particularly at the high school level (Carter & Kennedy, 2006). Involving peers in communication training, academic engagement, and classroom participation removes significant social barriers often associated with having adult paraprofessional support in general education settings. Third, a peer support model provides both skill building and support in everyday school settings, increasing the likelihood that valued student outcomes will persist. “Peers are the best-kept secret” in supporting communication, social participation and academic engagement of high school

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students with autism and intellectual disabilities (Hughes &

Save the Date for the 2011 TASH Conference No Excuses: Creating Opportunities in Challenging Times November 30-December 3, 2011 Atlanta, Georgia www.tash.org/2011TASH Read more on page 41.

Carter, 2008). When general education peers are trained, they can teach students with disabilities to problem-solve, sequence tasks, self-prompt, initiate interaction, attend to social partners and perform other valued skills (e.g., Hughes & Carter, 2000). Involving peers in instructional programs is cost-effective: (a) peers are ever-present across high school settings obviating the need to import other adults; (b) peers are willing to volunteer their time; (c) using peers frees up teachers to attend to other tasks while peers work one-on-one or in small groups; and (d) peers are expert in the social environment of school and have knowledge of expected communication and social participation behaviors. Other more costly and typical existing practices that involve removing students from authentic environments to participate in adult-directed interventions can be avoided. The challenges to meaningfully include high school students with intellectual disabilities and autism in general education classes and activities can be overwhelming. We do not propose that a peer buddy program by itself will result in optimal inclusion of these students. We do contend, however, that in combination with additional school reform and inclusion efforts, a peer buddy program can be instrumental in building a school community in which all students feel welcomed, accepted and included.

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References Alwell, M., & Cobb, B. (2009). Social and communicative interventions and transition outcomes for youth with disabilities: A systematic review. Career Development for Exceptional Individuals, 32, 94-107. doi:10.1177/0885728809336657 Carter, E. W., Hughes, C., Copeland, S. R., & Breen, C. (2001). Differences between high school students who do and do not volunteer to participate in peer interaction programs. Journal of the Association for Persons with Severe Handicaps, 26, 229-239. Carter, E. W., Hughes, C., Guth, C. B., & Copeland, S. R. (2005). Factors influencing social interaction among high school students with intellectual disabilities and their general education peers. American Journal on Mental Retardation, 110, 366-377. Carter, E. W., & Kennedy, C. H. (2006). Promoting access to the general curriculum using peer support strategies. Research and Practice for Persons with Severe Disabilities, 31, 284-292. Carter, E. W., & Pesko, M. J. (2008). Social validity of peer interaction intervention strategies in high school classrooms: Effectiveness, feasibility, and actual use. Exceptionality, 16, 156-173. doi:10.1080/09362830802198427 Carter, E. W., Sisco, L. G., Brown, L., Brickham, D., & Al-Khabbaz, Z. A. (2008). Peer interactions and academic engagement of youth with developmental disabilities in inclusive middle and high school classrooms. American Journal on Mental Retardation, 113, 479-494. doi: 10.1352/2008.113:479-494 Copeland, S. R., Hughes, C., Carter, E. W., Guth, C., Presley, J. A., Williams, C. R., & Fowler, S. E. (2004). Increasing access to general education: Perspectives of participants in a high school peer support program. Remedial and Special Education, 25, 342-352. Copeland, S. R., McCall, J., Williams, C. R., Guth, C., Carter, E. W., Presley, J. A., Fowler, S. E., & Hughes, C. (2002). High school peer buddies: A win-win situation. TEACHING Exceptional Children, 35, 16-21. Gresham, F. M., Sugai, G., & Horner, R. H. (2001). Interpreting outcomes of social skills training for students with high-incidence disabilities. Exceptional Children, 67, 331-344. Haring, T. G., & Breen, C. G. (1992). A peer-mediated social network intervention to enhance the social integration of persons with moderate and severe disabilities. Journal of Applied Behavior Analysis, 25(2), 319-333. doi:10.1901/jaba.1992.25-319 Hughes, C., & Carter, E. W. (2000). The transition handbook: Strategies high school teachers use that work! Baltimore: Paul H. Brookes. Hughes, C., & Carter, E. W. (2008). Peer buddy programs for successful secondary school inclusion. Baltimore: Paul H. Brookes. Hughes, C., Carter, E. W., Hughes, T., Bradford, E., & Copeland, S. R. (2002). Effects of instructional versus non-instructional roles on the social interactions of high school students. Education and Training in Mental Retardation and Development Disabilities, 37, 146-162. Hughes, C., Fowler, S. E., Copeland, S. R., Agran, M., Wehmeyer, M. L., & Church-Pupke, P. P. (2004). Supporting high school students to engage in recreational activities with peers. Behavior Modification, 28, 3-27. Hughes, C., Golas, M., Cosgriff, J., Brigham, N., Edwards, C., & Cashen, K. (2011). Effects of a social skills intervention among high school students with intellectual disabilities and autism and their general education peers. Manuscript submitted for publication. Hughes, C., Rodi, M. S., Lorden, S. W., Pitkin, S. E., Derer, K. R., Hwang, B., & Cai, X. (1999). Social interactions of high school students with mental retardation and their general education peers. American Journal on Mental Retardation, 104, 533-544. Hughes, C., Rung, L. L., Wehmeyer, M. L., Agran, M., Copeland, S. R., & Hwang, B. (2000). Self-prompted communication book use to increase social interaction among high school students. The Journal of the Association for Persons with Severe Handicaps, 25, 153-166. Newman, L. (2007). Facts from NLTS2: Secondary school experiences of students with autism. Menlo Park, CA: SRI International. Shukla, S., Kennedy, C. H., & Cushing, L. S. (1999). Intermediate school students with severe disabilities: Supporting their social participation in general education classrooms. Journal of Positive Behavior Interventions, 1, 130–140. U. S. Department of Education (2009). 28th annual report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2006. Washington, DC: Author. Wagner, M., Newman, L., Cameto, R., Levine, P., & Marder, C. (2003). Going to school: Instructional contexts, programs, and participation of secondary school students with disabilities. A report from the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International. Retrieved from www.nlts2.org/reports/2003_12/nlts2_report_2003_ 12_complete.pdf

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Articles from our Contributors

Natural Supports: A Delicate Balancing Act Michael Callahan

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he concept of natural supports is closely linked to TASH and its mission. In 1988, TASH members Jan Nisbet and Dave Hagner wrote the watershed article that appeared in The Journal of the Association for Persons with Severe Handicaps (this would later be renamed Research and Practice for Persons with Severe Disabilities): “Natural supports in the workplace: A reexamination of supported employment.” In the years following the introduction of natural supports, the concept went viral. By 1992, Congress accepted natural supports as a means for providing ongoing supports for supported employment. From the beginning, it seemed that those associated with developing strategies for natural supports confused the issue of developing creative and non-professionalized supports with the concept of accessing and utilizing the natural features of workplaces for support of people with significant disabilities. Wehman and Bricout (1998) detailed multiple publications and definitions in which natural supports referred to creative strategies to be developed by human service agencies rather than utilizing the actual natural supports available in community workplaces. Many of the early articles described ways to minimize the role of the job coach by finding innovative strategies to access supports from an array of sources such as mentors, parents, advocates, college students and workers from other shifts. These approaches shared the common feature of expanding access to non-traditional supporters under the name of natural supports. As the concept matured during the mid-to-late 1990s, there was a clear shift toward defining natural supports in terms of the workplace rather than in terms of alternatives to traditional job coaching. One article (West, et. al. 1997) got it just right. These authors suggested that natural supports “refers to the resources inherent in community environments that can be used for habilitative and supportive services.” (p. 175).

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In following this perspective, effective natural supports should attempt to balance two powerful forces that affect the success of anyone using integrated community environments – features of naturalness and individual needs. In other words, it’s not enough to simply gain access to naturally existing features of support. We must also assure that the needs of the individual are met. But how do we strike this balance? And which side of the issue do we start with—naturalness or needs? How do we build capacity in community environments to more effectively meet the needs of individuals with significant disabilities? The answers to these tough questions are complex and have been left almost completely to support agency staff – often young and inadequately trained – to find their way to naturally referenced success. It is fair to say that we’ve not been extremely successful in our efforts to increase natural supports in community environments. Successful facilitation of employment for persons with disabilities requires a balancing act of two perspectives, which are often at odds in community workplaces—the general decisions made by employers regarding the support given to their employees and the specific needs of individual workers. Traditionally the human service field has assumed the needs of workers with disabilities, especially employees with significant intellectual and developmental disabilities, could not be adequately met by employers. Therefore most support strategies evolved from a human service perspective. However, employment facilitators have begun to recognize the possible contributions of employers to be fully included in supported employment, and the limiting effects on integration and full participation, if they are excluded.

The Seven Phase Sequence This evolved understanding of natural supports dovetailed with that of Marc Gold (1980), a pioneer in the areas of training and employment. Gold suggested a systematic approach to teaching individuals who found it difficult to learn tasks by creating a model known as the Seven Phase Sequence as a part of his Try Another Way training. Marc Gold & Associates extended that model to address the challenges of developing natural supports (Callahan & Garner, 1997). The Seven Phase Sequence provides a culturally-based road map to be used by employment supporters to maximize natural supports and to balance the complex issues raised by the impact of disability.

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In the first four steps of the Seven Phase Sequence, a strong preference is established for using natural processes to assist supported employees to learn and maintain their jobs. This requires the employment facilitator to carefully examine and utilize all the features of “natural capacity� that exist in a workplace to assist all employees to learn and perform their jobs. The last three phases provide whatever additional needed assistance in as natural a manner as possible for those tasks in which the natural procedures are not sufficient. Employment facilitators are faced with providing creative and effective suggestions in Phases 5-7 to supplement the natural supports available on a job site. The Seven Phase Sequence results in a new role for employment facilitators and raises difficult questions regarding technical assistance and staff competence. For instance, how can a facilitator offer creative solutions if he/she does not

know powerful training techniques? How can a facilitator expect to effectively teach an employee who finds it extremely difficult to learn if the facilitator does not have knowledge of effective strategies that can be individually tailored to meet the needs of the employee? The answers require a balanced approach.

The Balancing Act Too often, a paradox exists for employment facilitators and their service agencies. Facilitators need to reference and support natural procedures and relationships whenever feasible and they need to be able to go beyond natural capacity to offer employees with significant disabilities access to necessary skills and relationships. Perhaps the first key to resolving this dilemma is for the employment facilitator to recognize there are limits to natural supports and natural capacity. Well-trained employment

The Seven Phase Sequence was developed by Marc Gold & Associates in 1980, and extended in 1997 to address natural supports.

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facilitators will usually have skills and perspectives to meet individual employee needs that are more technically effective than those found in typical employees and supervisors. However, there are times when human service staff are barriers to “natural” people on job sites. Employment facilitators must therefore recognize that powerful training and facilitation strategies might be needed to augment natural features to ensure an employee’s success. The Seven Phase Sequence provides a clear direction to employment facilitators to initiate instruction using the natural ways, means and people available to any new employee. However, this is not a lockstep model. The facilitator must carefully weigh the features of naturalness. Unless there is compelling evidence otherwise, the facilitator should proceed to support, not substitute for, the natural processes of the job site for initial instruction.

The Seven Phase Sequence in Action Phases 1-3: The Natural Phases The first three phases are used to determine the information necessary for the facilitator to consider the features of naturalness that might be used to provide support and direction assisting the employee to successfully perform the job. The decision of who will provide the initial assistance and how the job will be taught and the manner it is to be performed is covered in Phases 1-3. Implementation begins on the initial day of employment for the supported employee (or possibly during a negotiated orientation period) and continues until all necessary job routines have been taught to the employee. Additionally, the facilitator must ensure that the culture of the setting is translated to the employee.

Phase 1 references the natural ways in which job tasks are performed in work settings. Natural ways include methods of performance for targeted job tasks, the culture of workplace, the manner in which workers interact, the managerial style of the setting, and all other natural features that describe the unique characteristics of performance and behavior desired by the employer. This phase is crucial because it provides the information necessary for the new employee to “fit in.” Not only are employees who perform their jobs in a manner similar to others more likely to be accepted as “one of us,” but it will also be easier for supervisors and co-workers to provide assistance and troubleshoot problems due to the similarity of performance with their jobs.

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Phase 2 requires facilitators to examine the natural means used by employers to communicate desired employee performance and behavior. This concept concentrates primarily on the teaching strategies used by employers to introduce new employees to their jobs and to support them when they need assistance and upgrading. A troubling aspect of this phase is the possibility, or even the likelihood that teaching and supporting employees will vary across the work site, and that approaches may be unstructured and ineffective. Perhaps the most effective way to assess the natural means of job sites is to, first, ask the employer to describe the procedures used. Second, observe, if possible, teaching done by employees in the setting. Finally, and most importantly, ask to be taught how to perform the job tasks by the persons who would naturally assist the jobs to be performed by the supported employee. This approach will provide the employment facilitator with a valid perspective from which to make later decisions in the sequence.

Phase 3 asks facilitators to identify and enlist the natural people who typically support new employees to perform their job tasks. This activity is possibly the most novel aspect of natural supports for traditional providers of supported employment services. In the past, job developers often promised employers that job coaches would provide all the assistance necessary for successful performance and that the employer would have little or no responsibility in the initial training and support of the employee. This practice resulted in the isolation of supported employees within their own work settings. The job coach often acted as an interpreter for all the information, rules, policies and activities of the work place for the supported employee. This role placed the job coach between the employer and the employee. This phase asks employment facilitators to get to know all the different people who are responsible, or who may be willing, to provide assistance to new employees and to enlist those persons to provide training and support for the new supported employee.

Facilitating Successful Performance

Phase 4 involves the provision of initial and ongoing assistance to the supported employee. Facilitators must now decide the degree of naturalness that will be used for initial training. Unless there are clear indications to the contrary, it is expected that natural procedures will be utilized first. Planning the strategy to observe the training and to be in a position to offer suggestions and supports is critical. This requires the facilitator to be physically present at the job site during this initial period;

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and the facilitator may choose a range of options from discreet observation to close proximity. Plans also must be considered to offer feedback and suggestions to natural supporters. Depending on the needs of the employee and the capacity of the employer, the most appropriate strategy for feedback will vary. It may be necessary to offer almost immediate feedback in some instances; in others, more time can elapse. When significant problems arise, the facilitator should utilize more individualized attention for the supported employee.

Meeting the Individual Needs: Using Backup Phases 5-7 It is important to realize that regardless of who provides the initial training of the supported employee—natural supporters or the job coach—it is likely that there will be adjustments to be made to the features of naturalness identified in Phases 1-3. During the early days of employment, facilitators must constantly monitor the performance of the supported employee. If initial strategies are not successful, then the backup phases can be implemented.

Phase 5 involves supporting or possibly substituting those who are naturally involved in teaching job tasks. The facilitator must be present on the job site to successfully make this and many other backup decisions. Often, the immediate inclination is likely to be for the job coach to offer to substitute for the availability of the natural person. However, facilitators should ask: “What do you do when the supervisor of an untrained employee is called away to a meeting?” Or, “Has it ever happened that a new employee’s mentor is unavailable for support?” If so, “What do you do during these situations?” In other words, try to frame the issue as a workplace problem rather than as a disability issue. Of course the job coach can always step in to substitute, but first try to assist the business to address the challenge naturally. The decisions made during Phase 6 involve a reconsideration of the natural means used by employers to teach and motivate employees to perform their jobs. It is likely that many work places will not have a single approach to teaching and motivating, but rather a hodgepodge of approaches individually determined by each co-worker and supervisor. The teaching style of one coworker may differ significantly from another and further yet from a supervisor. It may be necessary to offer specific suggestions to specific natural supporters—each different from the other—in order to achieve successful performance. A number of strategies might work in Phase 6: (a) demonstrate a more successful

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technique, (b) negotiate a time for discussion and feedback with the natural supporter, (c) offer training information formally or informally to natural supporters, or (d) shadow the natural supporter and offer ongoing feedback.

Phase 7 decisions involve adapting, modifying or negotiating for flexibility in the natural ways that workplace tasks are performed. Natural ways most often reference task methods but can be expanded to include concerns like sitting/standing, work area design, employee dress and rules and other larger issues. These decisions are logically considered last because they are often the most consistent and unchanging features of work places. Job coaches must always get permission and employer input before making adaptation and modifications to natural ways. It is necessary, in some instances to negotiate for changes in this area even before the employee begins employment. For example, if the natural way to get paper for a copier in an office is to reach up into the storage cabinet to retrieve the paper, a modification would be immediately necessary for an employee who uses a wheelchair and has limited reach. These negotiations occur between Phases 3 and 4.

Making Changes Through the “Lens” of the Workplace As the Seven Phase Sequence is put into motion, it is critical that job coaches make suggestions through the lens of the workplace rather than unilaterally, at the point of the problem. In this way, we create the opportunity to build natural capacity rather than simply solving workplace issues. This effort is represented in the model (see Seven Phase Sequence model) by the arrows that return to the features of the workplace’s culture, Phases 1–3, rather than to Phase 4. The importance of this subtlety is huge. If job coaches solve workplace problems in Phase 4 only, the workplace loses the benefit of the solution. However, if job coaches attempt to address issues by engaging the business as if the problem is a workplace issue than simply a disability issue, the business has an opportunity to grow and build capacity. This is an essential outcome of the use of this strategy. Possibly the most significant contribution of the Seven Phase Sequence is its safety net. Rather than blaming performance problems on the employee or the employer, the sequence asks employment facilitators to consider utilizing increasingly powerful strategies to achieve successful performance. Phases 5-7 represent a logical closed loop for decisions that encourage the facilitator to remain positively focused until the employee learns the job.

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Articles from our Contributors Natural Supports: A Delicate Balancing Act continued from page 29

An employment facilitator’s role remains critical to supported employment success because of the continuing reality that many persons with significant disabilities require supports beyond those typically offered by employers. Funding and responsibility for the provision of supports primarily rests with human service agencies, however, the use of natural supports does not mean that human service supports are counter-productive, but that these services are best used to develop and enhance more natural supports. The usefulness of this approach to building natural supports depends on the employment facilitator maximizing the use of

natural conditions and supports while meeting the individual needs of the supported employee. The Seven Phase Sequence offers a logical road map for job coaches and job developers to follow throughout the delivery of job site supports. Job coaches, like most human service support personnel, are rarely given clear directions to assist individuals to reach their goals. A strategy such as the one described here can offer the clarity needed to maximize the use of natural features of support and to build effectiveness in community workplaces.

References Callahan, M. & Garner, B. (1997) Keys to the Workplace. Baltimore: Paul H. Brookes Publishing. Gold, M (1981). The Try Another Way Training Manual. Champaign, IL: Research Press Nisbet, J. & Hagner, D. (1988). Natural supports in the workplace: A reexamination of supported employment. Journal of the Association for Persons with Severe Handicaps. 13. 260-267. Federal Register, (1992, June 24). 34 CFR 363, 57 (122), 28432-28442. Washington, DC: US Department of Education. Wehman, P. & Bricout, (1998). Supported employment and natural supports: A critique and analysis. (Article 15). Richmond, VA: Virginia Commonwealth University Rehabilitation Research and Training Center on Workplace Supports and Job Retention. Available at http://www.worksupport.com/documents/article15.pdf West, M. Kregel, J. Hernandez, A. & Hock, T. (1997). Everybody’s doing it: A national study of the use of natural supports in supported employment, Focus on Autism and Other Developmental Disabilities. 12 (3) 175-181.

Attending College Naturally: The Use of Natural Supports in Western Carolina University’s University Participant Program Kelly R. Kelley, David L. Westling, Western Carolina University

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estern Carolina University’s (WCU) University Participant (UP) Program was developed in 2007 as a postsecondary education (PSE) program designed to provide a two-year, full-time, inclusive, on-campus living and learning experience for college-age persons with intellectual disabilities (ID).

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The UP program collaborates with public schools and community agencies that provide support to adults with disabilities. Since its initiation, two young men have completed the UP program and four new participants, two women and two men, are currently in their first year. Participants’ learning activities are developed through an individual, person-centered planning process resulting in an Individual Plan for College Participation (IPCP). The IPCP focuses on five areas: w Personal Development Skills (e.g., communication skills,

personal care skills, self-determination)

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Articles from our Contributors Attending College Naturally: The Use of Natural Supports in Western Carolina University’s University Participant Program continued from page 30 w Community Participation Skills (e.g., using public

transportation, budgeting, grocery shopping) w Vocational Preparation Skills (e.g., learning specific job skills

on and off-campus) w Social Participation and Learning (e.g., participating in

university functions such as athletic events, belonging to university clubs or organizations) w Elective Course Participation (e.g., auditing two to three

courses per semester, 6 to 9 credit hours) At the completion of the two-year period, when IPCP goals have been met and a sufficient number of hours per learning area have been documented, participants are awarded a UP Certificate of Accomplishment by the WCU Office of Educational Outreach. The overriding purpose of the program is to facilitate the transition of participants from secondary school to an adult life characterized by a high degree of self-determination, paid employment, independent living and an overall high quality of life. UP participants live on campus in rooms distributed throughout WCU residence halls under the same guidelines and policies that apply to all WCU students. Their on-campus life is fully integrated and inclusive. All activities are individually determined and implemented; there are no separate facilities, settings or classes for UP participants. WCU students provide natural supports to facilitate participation in: (a) dorm-life, (b) coursework, (c) social and recreational activities, (d) student organizations, and (e) social events (perhaps resulting in developing natural friendships and relationships).

The Use of Natural Supports in the UP Program “Natural supports refers to reliance on persons within typical environments,” (Westling & Fox, 2009, p. 565). Every semester, between 60 and 80 undergraduate student volunteers act as natural supports, facilitating “normalized” learning experiences for students with ID. In the WCU UP, we have used two levels of natural supports: (a) paid natural supports (currently paid through grant funds) and (b) unpaid natural supports. Although the term “natural supports” usually applies to those supports, resources and persons who are naturally found in a community setting, such as co-workers in a place of employment, our operational definition includes some students who are paid to

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assure a high level of consistency and sustainability. Experience has taught us that many undergraduates can provide natural support to UP participants without pay, but they may become less available when they have course projects due, exams to take, or when they obtain part time jobs. Therefore, it is important to maintain a cadre of paid natural supports and to supplement their time with unpaid support persons. In the current program, each UP participant has two students who are paid to provide up to four hours of support per day, five days per week. In addition, as many as three other students, who are not paid to provide supports, are available on a daily basis to support students with ID across a multitude of on- and off-campus activities. Many of the students are recruited through the WCU Office of Service Learning. All students who serve as natural supports must participate and complete a training session to learn effective ways to interact with and support UP participants. New volunteers are also provided with a volunteer manual and are able to shadow other natural supports until they are comfortable. Recently, we have expanded the training to include: (a) homework assistance, (b) assignment modification, (c) basic reading, math, and social skill instruction, (d) data collection, and (e) guidance on using a homework blog site. Most training sessions have up to 25 students who are interested in learning more about how to participate. It is very important that those providing natural supports understand the values of the UP program and interact with the participants in ways that maintain these values. During training, we focus on encouraging participants to be independent and to learn and exhibit a greater degree of self-determination. We want true natural supports, and we want to avoid over-protection and

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Articles from our Contributors Attending College Naturally: The Use of Natural Supports in Western Carolina University’s University Participant Program continued from page 31

creating barriers that might inhibit normal college-life activities. For example, we have a participant who can only eat gluten-free foods. In the dining hall, her natural supports leave her to make her own food choice based on a gluten-free list. Volunteers only intervene when necessary, such as if the participant makes an inappropriate food choice. This allows the UP participant to make choices and wise decisions when appropriate resources (e.g., the gluten-free list) are available and ultimately develop better eating habits.

Organizing the Natural Supports Ironically, natural supports do not occur naturally. In fact, the development of natural supports entails a great deal of coordination. Each semester, WCU students are recruited through the Office of Service Learning and through direct contact made by visiting key WCU classes and discussing the UP program. Interested students fill out an application form with times they are available to serve as supports and also the types of activities for which they would like to provide support. When accepted as natural supports, the students are asked to attend a training session to prepare for their roles. Soon after the individual plan for college participation (IPCP) is completed for each participant, weekly schedules are planned that include class times, social activities, work assignments, etc. Once the week is planned, the required supports are identified. See Figure 1 for an example of a weekly schedule for one participant. WCU students are expected to provide support at the designated time, location and within the specified activity. If they cannot, they are expected to find a substitute from the cadre of natural support volunteers. Since the inception of the program, one promising trend has occurred, as more WCU students participate in the program and show more responsibility, some are able to actually develop the weekly schedule and even identify the supports necessary to facilitate the activities listed as part of the schedule.

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The Benefits of Natural Supports There are several benefits that result from using college students as natural supports for the UP participants, both for the participants and for the undergraduate students. For the UP participants, it gives them the opportunity to have constant exposure to same-age models that can subtly guide and direct them through various social activities and help them with their academic pursuits. For the first time in many of the UP participants’ lives, they have the opportunity to spend most of their time with peers without disabilities and expand their social networks beyond what was previously available. This provides natural learning opportunities and often has a significant impact on personal behaviors and social learning opportunities. Because they share language characteristics and cultural values, same-age peers interact with the UP participants in ways that would be difficult and uncomfortable for many older adults, and they can do so without drawing undesired attention to the UP participant during important, natural learning opportunities. Those providing the support also benefit. For many who are interested in careers in teaching or other areas of human service, the natural support person role, whether paid or unpaid, provides a regular, authentic opportunity to develop both direct service and leadership skills. The undergraduate students’ responsibilities are real. Acting as a natural support is not a class project or an exercise done simply to earn a grade, but a meaningful experience requiring both responsibility and commitment. This was evidenced recently when a UP participant experienced a major seizure while engaged with a group of students in table games in the University Center. Because the support persons with him had been prepared for the event with an emergency protocol, the response to the challenge was easily handled and the event passed without undue disturbance. In recent interviews with WCU student supports, we asked them what the program has taught and/or meant to them. One student stated, “Working with the UP Program has taught me to have patience. Also, that everyone is different, meaning they all have different abilities. The program means a lot because it is important for them to get an education and learn to be independent. I see how much they all are changing and it is amazing to see what we can do.” Another student reflected, “The UP program has taught me that students with disabilities sincerely deserve higher education in order to succeed in society … They do not take the privilege of being here at WCU for granted and being a part of this wonderful program is what they are most proud of … The UP program means the world to me.

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Articles from our Contributors Attending College Naturally: The Use of Natural Supports in Western Carolina University’s University Participant Program continued from page 32

Without the program, I would have never met the four best people I have ever met.� Many WCU students are committed to the program and excel in their support of UP participants, regardless of their academic interests or abilities. As many of these WCU students will be future special education teachers, the UP program gives us a chance to assess characteristics not always easily discernable in traditional courses or practicum experiences. For example, we can learn a great deal about their dispositions toward working with persons with disabilities and about their problem solving skills. We have witnessed how these characteristics have led to small but important changes. For example, one participant had a fear of water but has now been taught by a peer how to swim. Another was homesick and did not want to stay overnight in his dorm room but gradually gained confidence and now, with support, stays overnight for the entire week. We believe there are also benefits for many in the student body who are not serving as natural supports but who see many of their peers in this role. It sends a clear message that participants should be viewed as natural members of the university committee, that it is okay to hang out with them, and that a little support is not necessarily a bad thing. It may mean that at some time sooner or later, they may also be able to support an individual with an intellectual disability no matter what career or major they choose.

Conclusion The WCU UP Program was developed based on key values, especially inclusion and self-determination. The use of natural supports in the program helps us offer a program based on these values. Participants are fully included in virtually all aspects of university life and exercise a great deal of freedom in making personal decisions. But being included and exhibiting a greater degree of self-determination requires a social scaffold that promotes growth through learning. Our students, as natural supports, provide this scaffolding. They are, we think, the essential element of the program that allows us to implement according to our values.

Reference Westling, D. L. & Fox, L. (2009). Teaching Students with Severe Disabilities (4th Ed.). Columbus, Ohio: Pearson/Merrill/Prentice-Hall Publishers

Figure 1. Excerpt of sample weekly schedule. See full PDF. A One Week Schedule for Anna UP Participant 1 Week of 3/7/2011 Times Monday 6:30-7:30 a.m. Sleep 7:30-7:45 Sleep 7:45-8:30 Sleep 8:30-8:45 Wake Up Time 8:45-9 9-9:15 Breakfast 9:15-9:30 Breakfast 9:30-9:45 Meds 9:45-10 Travel to Reid 117 10-10:15 First Aid/Safety 10:15-10:30 HEAL 250-02 10:30-10:45 Reid 117 10:45-11 10:10-11 a.m. 11-11:15 Travel to Class 11:15-11:30 Theatre Educ WS 11:30-11:45 THEA 271-01 11:45-12 p.m. Belk 381 12-12:15 11:15-12:05 12:15-12:30 Lunch 12:30-12:45 Lunch 12:45-1 1-1:15 Work from 1-3 1:15-1:30 Work in Mailroom 1:30-1:45 in Mailroom TASH Connections w Winter 2011Work w www.tash.org 1:45-2 Work in Mailroom

Mar 8, 2011 Tuesday Sleep Sleep Sleep Wake Up Time Breakfast Meds Travel to Class Intro to Speech COMM 201-15 Stillwell 253 9:30-10:45 Travel to Camp 152 Meet with Michael Social Skills Instruction Lunch Lunch Lunch Travel to UC Work in Mailroom 2 Hours from 1-3 Work in Mailroom

Mar 9, 2011 Wednesday Sleep Sleep Sleep Wake Up Time Breakfast Breakfast Meds Travel to Reid 117 First Aid/Safety HEAL 250-02 Reid 117 10:10-11 a.m. Travel to Class Theatre Educ WS THEA 271-01 Belk 381 11:15-12:05 Lunch Lunch Work in Mailroom 2 Hours from 1-3 Work in Mailroom

Mar 10, 2011 Thursday Sleep Sleep Sleep Wake Up Time Breakfast Meds Travel to Class Intro to Speech COMM 201-15 Stillwell 253

M Fr Sl Sl Sl W Br Br M Tr Pe So C

9:30-10:45 Social Skills Instruction Resources in Camp Lunch Lunch Lunch Travel to UC Work in Mailroom 2 Hours from 1-3 Work in Mailroom

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Tr Tr Th TH Be 11 Lu Lu G W 2 fro W


Articles from our Contributors

Embracing Our Interdependence—The Importance of Learning Together Barbara McKenzie

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hen I first got involved in the inclusive education movement, many of us used the argument that it was primarily for social benefits. Slowly we began to stress the importance of accessing the curriculum and making enhancements, accommodations or modifications as needed so that all students could learn together.

Inclusion was not just a disability or special education issue; it was about welcoming all diversity—a social justice issue. Now, I wonder if we’ve focused too much on the achievement of academic standards and testing, which has led to an obsession with identifying deficits through more assessment, resulting in more sorting, pull-out and remediation for a variety of students, including those with disabilities. Discovering the gifts of each person and building on those gifts, developing relationships and embracing our interdependence are often not considered as valid

Inclusion: It’s All About Blue Nail Polish and a Tamagotchi Reproduced with permission from Reflections of Erin, The Importance of Belonging, Relationships, and Learning with Each Other, By Barbara McKenzie, Design by Chris McKenzie, Art of Possibility Press, 2008. It has been seven years since I became a “bornagain inclusionist.” Our daughter, Erin, had entered a segregated pre-K program across town that primarily did reverse mainstreaming (first graders coming into the special ed class to play with the students). All of the students were close in age and Erin seemed to be happy.

color of choice for pre-teen girls and a Tamagotchi is a “virtual reality pet” also cherished by the same. Erin and her family have been introduced to these important fads by the people who truly understand inclusion best—the kids!

Unfortunately, I wasn’t.

Since Erin began Kindergarten at her neighborhood school, her peers have always been calmer and more natural about handling all of this inclusion stuff than we adults. They have figured out creative ways to interact with Erin and have learned to value her for what she has to offer. She is in with the in group and with the out group, and with the group who doesn’t care if they’re in or out. Erin may not always be a first choice to call or pick, but she is usually the second choice. Her nickname is “E” like the cable channel. She doesn’t just participate; she is one of the gang.

That fall I went to the National Down Syndrome Congress Convention in Memphis and heard Marsha Forest, George Flynn and Barbara Buswell share their visions. I began forming one of my own. A month later I went to a retreatstyle conference in Dayton on inclusive education and became completely committed. There have been days in the past seven years that I have felt like I should have been “committed!” Although our family has received the support of some administrators, teachers and school personnel, others have shown much consternation and misunderstanding. Every year we have to “sell” our child to someone. We work very hard to ease those minds and in the end Erin usually wins them over, but it does take its toll. Just when I am ready to wave the white flag and waiver in my commitment, something happens and I’m reborn. Most recently I have a new resolve because of blue nail polish and a Tamagotchi. Blue nail polish is the

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The morning that I picked Erin up from the sleep over and found her with her blue nails and her beeping Tamagotchi, this inclusion stuff all made sense again. Erin’s friends have assured me that I don’t have to worry about Erin going to middle school. For now, I find comfort in that … if only we adults don’t screw it up! “Relationships lead to more opportunities for all.”

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Articles from our Contributors Embracing Our Interdependence—The Importance of Learning Together continued from page 34

as research and data collection for curriculum development or instructional practices. The familiar, longitudinal study of our daughter Erin demonstrates the value of connecting, reflecting and sharing our stories. This anecdotal data reiterates our need to learn with each other as we transform our schools into inclusive learning communities. From the beginning it seemed to make sense that Erin should attend the neighborhood school her brother attended. We lived in a community with many young children who often played in our backyard and those of our immediate neighbors. The school bus stop was across the street and where these same children and many of their parents gathered each morning. Why wouldn’t Erin and her family do the same?

A special class and teacher for students with Erin’s label were located in the middle school. “Why didn’t Erin belong in that class down the hall with all of the special services provided there?” seemed to be the question on a lot of educators’ minds. “Weren’t we doing her an injustice depriving her of this opportunity to be with students like her and benefit from those extra supports?” We kept hearing about our imprudent decision – spoken in the most polite fashion – for most of the first half of sixth grade. Thankfully the principal understood our vision and saw the value of Erin’s presence for her and the other students, as did the district director of special education. Slowly we got to know each other better and most of the sixth grade team of teachers began to “get it.”

Our first hurdle was that the neighborhood school didn’t have a special class for Erin’s label – in fact it was an open concept school with few walls and most educators believed it wasn’t a good placement for a student with Down syndrome. At the neighborhood school, there was a special education teacher who taught a group of students labeled learning disabilities (LD) in a fairly inclusive manner at the time. There was also an LD tutor on staff. However, the special teachers and classrooms for students with developmental or multiple disabilities were located outside our neighborhood, at other buildings in the district and county or at separate mental retardation/developmental disabilities (MR/DD) schools as they were called in those days.

Erin entered a middle school that was three-times the size of her elementary school; but then, so had her friends from the neighborhood. Together they would help each other through the transition. As one of her friends wrote later, “In middle school we all went through a change of environment. Even though that was the case, Erin was always there to pick up your spirit.” Like many young people, Erin didn’t always do what the adults wanted her to, but she usually did model what her peers were doing. Sitting in the middle of the class and observing how the other students participated was how she learned the best. When Erin was introduced to something that she really loved, as she eventually came to do with anything by Shakespeare, she became a leader and would share her joy at discovering the world of “Romeo and Juliet” and even “Hamlet.” While some students were moaning, Erin was cheering! The teachers loved that!

After hearing Marsha Forest, Barbara Buswell, and other leaders in the field talk about inclusion, I became adamant that Erin needed to be learning in her neighborhood community. I admit that at first I was ready to sign away any guarantee of her learning anything just to get the school personnel to relax and let Erin in. Luckily, we all were able to figure out a way to provide support with the existing tutor, speech therapist and an inclusion facilitator who worked with the general educators so that they could teach Erin along with their other students. Of course, Erin showed us over the years that she was learning, sometimes in spite of the adults, and we were learning as well. I like to say that we were all confused together and our confusion opened us up to beautiful discoveries! The law came in handy once or twice, but mostly relationships moved us forward – among the adults and the children. The idea of building on each of our strengths and being open to the possibilities became the norm more often than not. My husband and I were a team at meetings and united in our beliefs and, with Erin as our leader, we gathered others along the way. Some times were worse than others – beginning middle school comes to mind. Fortunately middle school didn’t turn out to be as difficult for Erin as it was for the adults.

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After sixth grade, each year got a little easier because of the relationships Erin and the rest of us were making. Around eighth grade I began to try and capture what was happening and share that with Erin’s teachers. In turn, they began sharing what accomplishments they were seeing and how they were trying to assist Erin to build on her strengths and successes. The reflections

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Articles from our Contributors Embracing Our Interdependence—The Importance of Learning Together continued from page 35

list snowballed and continued to be passed on and added to as the years went on. I like to think the teachers were doing that with their other students as well. Erin’s middle school began a Thespian group and she joined initially because of two friends from elementary school. They even got to travel to New York City to see a few Broadway shows. Although Erin would join other clubs, she truly blossomed with the Theatre club, which carried over to high school. Being a ham, she also liked to give speeches in front of the class, a group, her mirror, anything! That became a wonderful way to share what she was learning. Communication was challenging for her but it also became her strength and as the adults got to know her better they supported and used that strength to enhance Erin’s learning and value within the class. By the time we got to high school, things seemed to be going well. The network of relationships was growing and a lot of good ideas were being shared. Erin’s friendships not only continued into high school but seemed to strengthen and grow with new friends they were meeting together. One good friend who met her freshman year expressed, “I am thankful for her acceptance and her willingness to include me in the traditions that were already made.” During Erin‘s high school years the importance of location, location, location was again confirmed. All of Erin’s classes were the general education academic classes and she participated in typical extracurricular activities. Most of the students with multiple disabilities were in separate classrooms, on different schedules, with different personnel from outside agencies, and out in the community during school time. High school was the most important community for Erin to be involved in! Only a few students with more significant disabilities were included. Although Erin and the other “included” students did not have any more special abilities than the students in the separate classes, the perception by the general population, adults and students, was that they were less disabled. When I would ask why all of the students with more significant disabilities were not included or participating in an activity as Erin was, I was told on more than one occasion that she “wasn’t as handicapped as those students.” Those misguided perceptions allowed Erin to be a participating member of the school while the students in the separate programs were relegated to being occasional visitors or, worse yet, service projects. When senior year came, the students in the special classes, their families and their teachers weren’t even sure what year they were in school and whether they should go through the graduation ceremony. They were not involved in the senior class activities,

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except for the prom, which they went to as a group along with several adult chaperones. There was no senior dessert, no senior trip to Cedar Point, no evening of reflection, and not even a senior picture in the yearbook. I don’t think they were intentionally excluded; rather, they were just never thought about. Erin did happily participate and proudly graduated with her friends. Theatre introduced Erin to Otterbein University during her junior year and offered the dream of college after high school. At Otterbein, Erin worked with the box office to compile the programs and usher for the summer and school year seasons. They never felt that she needed much assistance and Erin did just fine working with the other college students. She would often stay to see the play, sometimes several times, and always enjoyed each performance. The relationships she was making with the students and faculty at Otterbein were also expanding her opportunities to eventually take college classes. Unfortunately we never got to realize that extended journey when Erin passed away unexpectedly a few months after graduating high school. Afterwards, an Otterbein graduate wrote, “Her love and passion for theatre were inspiring. Seeing her usher and watch these shows that have become the norm in my life—her excitement and joy always showing—it brought a new light to our theatre and helped renew my love.” Erin had the opportunity to have an ordinary life and her presence and participation was essential to her and to all she interacted with. This importance of the existence of each of us to each other is reconfirmed in a belief shared by many Native Americans. “Mitakuye Oyasin” is Lakota and often used at the end of a conversation as an affirmation. It can be translated as “We are all related.” As described in a plaque in the Smithsonian National Museum of the American Indian, it means that everything in the universe is “connected, interrelated, and dependent in order to exist.” This same thought is weaved throughout the musical, “Wicked,” by Stephen Schwartz. Near the end of the play, the two main characters sing a beautiful song titled, “For Good,” which tells how their lives have been changed—for good—by knowing each other. What are the consequences if someone is not present so that we can get to know them and he or she can get to know us? Who is missing or forgotten from our neighborhood schools and communities? How can we find them, welcome them and connect? We need each other.

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SPECIAL FEATURE

2010 TASH Conference In Review

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f you joined us in Denver for the 2010 TASH Conference, you saw first-hand how working together, learning from one another and inspiring each other can make a difference. Roughly 800 advocates, selfadvocates, educators, service providers and others came together during those four days in Denver to learn, share and grow ‌ to build upon the work and efforts of one another and to plant seeds for the future. TASH thanks everyone who was able to attend the 2010 TASH Conference and contribute to the ideas, insights, expertise and inspiration that are leading the way for positive change in the lives of people with significant disabilities.

TASH chapter leaders from across the U.S. participated in a five-hour workshop to share ideas and strengthen the TASH chapter network. The workshop included a discussion of the history of TASH, visioning for how TASH can impact the disability community in the future and grassroots advocacy training using social media. Left to right: Dean Paul and Ric Nelson made the long haul from Alaska.

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Special Feature: 2010 TASH Conference in Review

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Attendees peruse the exhibit hall to learn more about the products, services and organizations on display during the conference. Exhibitors at the 2010 TASH Conference included publishers, self-advocate entrepreneurs, merchants, foundations, service organizations and others serving the disability community.

Dan Taylor (center) takes a moment to pose for a photo while walking the poster presentation isles. Posters told of the remarkable work and contributions of presenters on a wide range of topics.

Left to right: Kyung Gun Han and Yun Woo Lee of Dankook University, along with Youn Jung Park of Pennsylvania State University, share their poster presentation on factors that promote integrated work settings.

Douglas Fisher, professor of language and literacy education at San Diego State University, addresses conference goers during a keynote address. Fisher shared his thoughts on common sense education and what he has learned over the years working with students with disabilities in the classroom.

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Special Feature: 2010 TASH Conference in Review

TASH held TASH TECH pre-conference workshops to explore a range of topics in great detail in half-day and full-day formats. Nancy Frey of San Diego State University (left) leads a TASH TECH on curriculum supports in secondary schools.

Tracy Thresher (left) and Larry Bissonette (right) respond to audience questions during a special screening of their film, Wretches & Jabberers. The film follows Tracy and Larry on their global quest to change attitudes about disability and intelligence.

Julie Petty addresses a packed auditorium during her keynote address at the 2011 TASH Conference. As a mother, wife and passionate self-advocate, Julie shared her life story and challenged attendees to create change within their communities.

TASH Board member Bill Smith (left) presents the TASH award for Positive Images in the Media to Steve Dallman (center) and Art Butcher (right), stars of the film Breaking Shells. The film follows Steve and Art across South Dakota as they advocate for the right for people with disabilities to make decisions that impact their lives.

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Special Feature: 2010 TASH Conference in Review

Left to right: Julie Petty, Victor Robinson, Bob Williams, Emily Titon and Robert Kennedy attend the Self-Advocate Forum. This annual forum is an opportunity for persons with disabilities to discuss the issues affecting their lives on a wide range of topics.

Ralph Edwards speaks during the TASH Night Out event about the vision of TASH – both in its rich history and going forward to the future. This special event, A Social for Social Justice, attracted a lively crowd of veterans and newcomers alike during the TASH Conference to fundraise for TASH.

On June 28, 2011, TASH members joined congressional staff and other advocates for a TASH-led congressional briefing. The subject of the briefing was national policy measures to prohibit restraint and seclusion abuses in schools.

You can now view this briefing in its entirety by clicking here!

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SPECIAL FEATURE

2011 TASH Conference Preview

F

or 36 years, the TASH Conference has been the place to come together, learn more about best practices in the field of significant disabilities and stake your claim in the movement to create real, progressive change for people with significant disabilities. We look forward to continuing that legacy this year, especially amid the myriad of challenges facing the disability community today. The 2011 TASH Conference theme is NO EXCUSES: Creating Opportunities in Challenging Times. This is more than just a theme, it is a rallying cry for our community to overcome all barriers to positive change. In light of state and federal budget cuts, high unemployment and inadequate services and supports for life in the community (to name of few of today’s challenges), TASH members and supporters will stand together to create a pathway to a positive future. We hope to see you there!

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We are excited to host the 2011 TASH Conference in Atlanta, Georgia! Whether it has been organizing activists to desegregate public and private facilities in the 1960s or working to eliminate the restraint and seclusion of students with disabilities in Georgia schools, Georgia and its residents have continuously pushed new frontiers in their state to create national impact. At the 2011 TASH Conference, we are committed to examining current local challenges, adding national (and international) perspectives and creating a forum for thinking about systems change. You don’t want to miss it!

2011 TASH Conference No Excuses: Creating Opportunities in Challenging Times November 30-December 3, 2011 Atlanta, Georgia www.tash.org/2011TASH The following is just a taste of what’s in store for the 2011 TASH Conference! We have a variety of activities and projects still in the works, including our Diversity & Cultural Competency Initiative and special planning on eliminating the use of restraint

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Special Feature: 2011 TASH Conference Preview and seclusion in schools. We are announcing new content, events and activities each week, so visit www.tash.org/2011TASH or follow us on the TASH Blog, Facebook or Twitter for the latest information about the 2011 TASH Conference!

2011 Keynote Speakers We are pleased and honored to announce a very talented slate of keynote speakers for the 2011 TASH Conference! All three speakers have used innovative practices and creativity to address the most challenging issues people with disabilities face today.

Kate Gainer Kate Gainer is the Managing Principal of the Georgia Disability Advocate Consulting Group. Nationally recognized as a disability rights leader and speaker, Kate organized the first Long Road Home Project, an annual week of events throughout Georgia to raise awareness of the Olmstead decision. Kate was born with cerebral palsy and grew into a life of advocacy as a black woman with a disability in the South. Rob Horner Rob Horner is Alumni-Knight Professor of Special Education at the University of Oregon. He is a past editor of the Journal of Positive Behavior Interventions, and the Journal of the Association for the Severely Handicapped. Dr. Horner’s research interests focus on positive behavior support, applied behavior analysis, stimulus control, instructional technology, severe disabilities and sustainable systems change. John O’Brien John O’Brien learns about building more just and inclusive communities from people with disabilities, their families and their allies. He uses what he learns to advise people with disabilities and their families, advocacy groups, service providers and governments and to spread the news among people interested in change by writing and through workshops. He is a member of the Center on Human Policy, Law & Disability, Syracuse University, and a Fellow of the Centre for Welfare Reform, and is associated with in-Control Partnerships and the Marsha Forest Centre.

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Special Highlights for the 2011 TASH Conference Micro-Enterprise Marketplace The 2011 TASH Conference will feature the first ever MicroEnterprise Marketplace. This marketplace is part of the conference exhibit hall and is intended for small business owners with disabilities to showcase their products and services to conference participants from across the U.S. and around the world. We’re calling all self-advocate entrepreneurs to come be a part of this year’s Micro-Enterprise Marketplace! TASH is committed to supporting innovative ideas and practices that lead to fulfilling and independent lives in the community. Please join us! Visit www.tash.org/2011TASH to learn more. Community Living Gathering The Community Living Gathering at the 2011 TASH Conference will be a space of dialogue, innovation, hospitality, color, music and sharing that creates a sense of community. In the past, it was one of the things that set TASH apart from any other conference with competing sessions. The Community Gathering will embrace everyone—part of its richness is that it provides a place for parents, self-advocates, professionals and anyone else who feels passionately about everyone being fully included in the community to come together! It will be a place where the most cutting edge ideas and practices in community living will be shared. Transition Conference within the TASH Conference TASH is planning a Transition to Employment Conference for Youth with Significant Support Needs (working title) within the TASH Conference, November 30 – December 3, in collaboration with the Georgia Department of Education and several local and national partners. This conference will feature best practices that educators, vocational rehabilitation counselors and adult service professionals have identified that succeed in integrated employment for young people perceived as the most challenging to serve. Topics will feature multi-agency partnerships and funding strategies; defining and describing “employment first” strategies; philosophy and values that guide practice; successful transition planning; employment experiences during high school that lead to employment; post-secondary options that lead to employment; parent and student roles and responsibilities in successful transition outcomes; and much more. Panels of speakers will include leading researchers, practitioners from the field of education and adult services, parents, and young people with significant disabilities. Other features of the TASH conference that Transition Conference attendees may want to

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Special Feature: 2011 TASH Conference Preview attend include multiple concurrent sessions and workshops on inclusive education, employment, and post secondary education. Follow-up reports and discussion from the Alliance for Full Participation Summit and the National Conference on Transition, and an Employer mini-strand are also conference features of interest. More information will be available at www.tash.org, or by contacting Barb Trader, TASH, at conference@tash.org.

Registering for the 2011 TASH Conference Online registration for the 2011 TASH Conference is now open! Visit the TASH Conference website at www.tash.org/2011tash to register online or download a printable registration form. We’ll also post additional details about registration on the site, so check back often or watch for more information in TASH in Action! You can also call us at any time with questions at (202) 540-9015 or send an e-mail to conference@tash.org.

TASH Gratefully Acknowledges the Following Donations of Time and Money

Kristine Atanley

Doug Loeffler

Susie Schaefer

Emmanuel Asiedu

Sharon Lohrman

Steve Schreiber

Elise Baach

Serena Lowe

Randy Seevers

Bernard Cooney

Lisa Massa

Laurel Semsch

Monica Delano

Kathleen Masterson

George Singer

Teri Ehrenhardt

Sandra McClennen

Martha Snell

Debbie Einhorn

Patricia McDaid

R. Snowder

Sally Fairley

Lisa Mills

Lynne Sommerstein

Gail Fanjoy

Donna Murrell

Kayla Takeuchi

Micah Fialka-Feldman

Connie O'Brien

Stephanie Thomas

Robyn Fitzgerald

JungSook Park

Jean Trainor

Marvin Friedman

Robyn Patterson

Dina Traniell

Gerrie Frohne

David Pitonyak

David Westling

Dianne Hansen

Carol Quirk

Maurita Williams

Pamela Hunt

Jonathan Riethmaier

Nathan Wilson

Lewis Jackson

Darlene Riethmaier

Park Yeon

Lindsay Johnson

Andy & Sherry Riethmaier

Total Living Concept

Haley Kimmet

Matt & Nina Riethmaier

Metropolitan Community Builders

Ann Kremer

Nicholas Runyan

National Down Syndrome Society

James Kuntz

Diane Ryndak

National Fragile X Foundation

Byoung Lee

Thomas & Kim Saul

National Autism Association

Jungyul Lee *This list reflects donations made between November 2010 and May 2011

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SPECIAL FEATURE

Cultural Competency Corner TASH Partners with National Center for Cultural Competence for Disability Organization Assessment Tool While there are tools and guides to assessing cultural and linguistic competency within organizations, little has been done to address organizations serving the disability community. For this reason, TASH played a leadership role in creating the Cultural and Linguistic Competence Assessment for Disability Organizations, an assessment instrument available through the National Center for Cultural Competence. Along with seven of our disability advocacy and research partners, TASH assisted the NCCC in the development of this guide, which has created opportunities for the disability community to assess their organizations’ overall work for cultural and linguistic competency. This assessment guide provides the opportunity for organizations to address issues of cultural and linguistic competency and create strategic plans for implementing programs. TASH partners in this endeavor include The ARC, Autism Society of America, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, Council of Parent Attorneys and Advocates, National Down Syndrome Congress and the National Council on Independent Living. The Cultural and Linguistic Competence Assessment for Disability Organizations can be found at http://www.gucchdgeorgetown.net/NCCC/ CLCADO.

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TASH Presents at Congressional Black Caucus Health Braintrust The Congressional Black Caucus Health Braintrust is known for its long-standing influence on policy decisions impacting African Americans and other minority populations. Each year, the braintrust provides an opportunity to re-examine health issues and the implications for racial and ethnic minority groups in the U.S., as well as identify policy goals for eliminating disparities. Along with policy-makers, the 2011 braintrust held Tuesday, April 12, 2011, involved opinion leaders and experts to discuss these disparities and the legislative goals to combat them. As in years past, representatives from TASH were on hand to present a perspective of the disability community. In attendance were Carol Quirk, TASH Board President, Ralph Edwards, Board Member and Chair of the Diversity and Cultural Competency Committee, Anne Smith, member, and Dara Baldwin, TASH staff member. Carol, who has considerable experience on disparities for individuals of diverse backgrounds with disabilities, had the following remarks on the opportunities the braintrust had for TASH: First, the conference has representation from many of the federal agencies that address health issues, key civil rights, health and social policy organizations, and legislative leaders. Second, the focus of the event is reducing health disparities in diverse

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Special Feature: Cultural Competency Corner communities, which is consistent with TASH efforts in recent years. A large focus of the TASH Board and of the Diversity and Cultural Competency Committee is not only to increase our internal cultural competency and sensitivity within the TASH membership, but also to advocate for and address the health, education and employment challenges faced by people of diverse backgrounds with disabilities. Most importantly, the participation of TASH in the CBC Health Braintrust enables us to expand relationships with civil rights organizations and share the message of TASH about disparate experiences for persons of diverse backgrounds with a disability. Ralph Edwards, who has been a leader in elevating the public consciousness of disparities faced by people of diverse backgrounds with disabilities, was invited as a panel participant during the CBC Health Braintrust. The panel, Health Reform that Transforms, explored the successes and challenges of health care reform and how it has been implemented. During the discussion, Ralph noted the disparate experiences of people with disabilities of diverse backgrounds in accessing care and achieving positive health outcomes: TASH has documented lower life expectancy, higher morbidity rates, and decreased quality of life outcomes for people with disabilities, particularly people of diverse backgrounds with disabilities. The CBC Health Braintrust can help raise awareness of this population to federal agencies, researchers, policy-makers and to all diverse communities.

By being part of this event, TASH was able to connect with a number of influencers about TASH’s vision for people of diverse backgrounds with disabilities.

Organizations Sign Disability Community Resolution In recent months, several national disability advocacy organizations have signed the Disability Community Resolution committing themselves to promoting and maintaining cultural and linguistic competency as a means to achieving diversity within the organizations and the disability community. These organizations include TASH, the National Council on Independent Living, American Association on Intellectual and Developmental Disabilities, National Down Syndrome Congress and Autism Society of America. The actions of these organizations include self-reflection through periodic cultural competency assessment, participation in multilevel cultural competency training and dedication of resources. The recognition of the intersection of disability and diversity and its disparate impact on health, employment, deployment of services and supports, education and other quality of life factors presents a formidable challenge. The organizations committed to this resolution intend to meet that challenge. The Disability Community Resolution can be viewed at TASH.org by clicking here.

2011 TASH Conference registration opens in July! Planning to see us in Atlanta? Visit www.tash.org/2011tash to take advantage of early bird pricing. We’re making sure this year is the best conference yet, so check back often as we update the site with news and details!

2011 TASH Conference – November 30-December 3, 2011 – Atlanta, Ga.

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Association News Report Shows ‘The Cost of Waiting’ on Restraint and Seclusion Legislation On March 3, 2010, the U.S. House of Representatives passed legislation to protect school children from abusive restraint, seclusion and aversive interventions. This bill, the Keeping All Students Safe Act, represented a monumental change in the protections that would allow all children to learn in a safe environment. Unfortunately, the Senate counterpart of this critical legislation never reached the floor for a vote. To the dismay of thousands of families and advocates, the issue was taken back to square one. Approximately a year after the passage of the Keeping All Students Safe Act in the House of Representatives, TASH has released a report on the tragic implications of inaction. The Cost of Waiting is a review of restraint and seclusion cases as told through news media. With each story told, there are dozens and possibly hundreds untold. The Cost of Waiting was created to elevate the national dialogue on restraint and seclusion, and to let lawmakers know that each day we wait, the health and lives of children are at risk. The Cost of Waiting was released just as Rep. George Miller, D-Calif., re-introduced legislation on restraint and seclusion in the U.S. House. This report is available as a free download at TASH.org. Visit www.tash.org/the-cost-of-waiting or type “The Cost of Waiting” into the search box at TASH.org. We encourage you to spread the word about this document, especially to members of Congress and media where you live.

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‘Shouldn’t School Be Safe?’ Offers Insights and Tips to Parents on Restraint and Seclusion What seems like a simple question has become a growing concern among families and advocates— Shouldn’t School Be Safe? We have come to understand the impact of restraint and seclusion through first-hand accounts, stories of abuse from friends and neighbors and investigations on abuse, including TASH’s 2011 report The Cost of Waiting. And while families continue to wait for federal protections against restraint and seclusion in U.S. schools, many parents live with the persistent fear that their child may be vulnerable to abuse in school. For this reason, TASH has compiled Shouldn’t School Be Safe?, a free, downloadable parent guide to restraint and seclusion in school. Written by parents and for parents, Shouldn’t School Be Safe? offers preventative steps parents can take to limit risk at school. The guide encourages parents to play an active role in decisionmaking, including the creation of an Individualized Education Plan and behavior plan. It also covers ways to build positive relationships and set the foundation for success within the school and community for their child. Shouldn’t School Be Safe? includes information and step-by-step actions for parents to take if they discover or suspect their child has been restrained or secluded in school. TASH encourages anyone interested in the protection of children against restraint and seclusion to view this guide and share it

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Association News with your networks. Shouldn’t School Be Safe? is available to view and download at www.tash.org/shouldnt-school-be-safe, or visit TASH.org and search for “Shouldn’t School Be Safe?”

Welcome New TASH Board Members TASH is fueled by the contributions of its members, many of whom volunteer their time and effort, make financial contributions, collaborate on a range of projects, participate in committee work and serve on the national TASH Board of Directors. In addition to those elected through the 2011 Board election, TASH has appointed the following individuals to serve as ex officio members of the Board: Lisa Mills, Charles Dukes, Pat Amos and SungHo Park. A complete list of Board members can be found at www.tash.org/about/ and click “leadership.” We look forward to their contributions as TASH Board members.

TASH Leads Advocacy Effort on Restraint and Seclusion On June 28, 2011, TASH held its fifth annual Capitol Hill Day in Washington, D.C., with the board of directors and a number of advocates, some of whom traveled from as far away as California, Arizona and Florida to be here. Capitol Hill Day is an opportunity for constituents to come to the nation’s capital and present their concerns about issues that are important for legislation and policy reform. Each year, TASH sends out an invitation to its board of directors and to members to join in a two-day event where advocacy is at the forefront. Day one is an intensive advocacy training session, which was led this year by Serena Lowe, principal of Aneres Strategies and a government affairs consultant for TASH. During the training session, Serena review TASH’s position on policy items and armed attendees with

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the materials and know-how to be effective advocates on the Hill! This year’s issue of concern was the bill H.R. 1381, otherwise known as Keeping all Student Safe in Schools. This legislation was introduced in the 112th Congress on April 6, 2011, by Rep. George Miller (D-Calif.), ranking member of the House Education and Workforce Committee. It is co-sponsored by Rep. Gregg Harper (R-Miss.). As of today there is no companion bill in the Senate. This bill is the restraint and seclusion legislation that TASH has put at the forefront of its legislative agenda and has lead the disability community with the creation of the coalition The Alliance to Prevent Restraint, Aversive Intervention and Seclusion (APRAIS). There were 13 board members and nine advocates on the hill visiting both House and Senate representatives to discuss H.R. 1381, as well as TASH’s work in each of its national agenda areas—education, employment, community living, diversity and cultural competency and human rights. Together, this amazing group of 22 people represented 16 states and visited 47 House and 32 Senate staff members to discuss the importance of “The Cost of Waiting” to pass this important legislation. The advocates asked their House representatives to sponsor the bill, to use their power to move the bill through committee and to the floor and to vote yes when the time comes. From their Senators, advocates asked for a sponsor who will not only introduce a companion bill, but also assist with the passage of this bill in the 112th and have this bill as one of the important pieces of legislation to come out of this congress and signed by President Obama. Some of the advocates discussed their personal story of how their child has been the victim of such horrific procedures. All of them informed the legislators and their staff of the data that proves the use of restraint and seclusion is not needed nor warranted. They

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Association News who has thus far participated in two important advocacy alerts in 2011. Your efforts are appreciated. We still need you and other TASH members to make a difference. Making phone calls or sending e-mails to your Senators or Representative has a direct impact on the final outcome of legislation. Here are the two most common requests that you can make to your legislators:

A. Co-Sponsor a bill—this means a bill has been introduced, but has not yet been placed on the docket for a vote (many bills are introduced that are never considered for a vote). If a bill has been introduced in the House, any House member can co-sponsor the bill. The same goes for bills in the Senate—any Senator can co-sponsor a Senate bill. An effective way to impact legislation is by gaining a number of co-sponsors. used the information given to them in the training and presented in the brief titled “The Business Case for Preventing Restraint and Seclusion,” by the Substance Abuses and Mental Health Services Administration (SAMHSA), to discuss the cost savings benefits to government by eliminating these procedures. This year’s Capitol Hill Day also included a Congressional Briefing session in the Rayburn House Office Building. This educational briefing was opened to the public and the congressional staff and offices. There was a full house with more than 100 participants who were given a wonderful educational session about the need to end the use of restraint and seclusion in our schools. Barb Trader, Executive Director of TASH, was the moderator for the hour-long panel discussion and question-andanswer session. You can see photos from the event or watch the briefing in its entirety. If you have questions about this event please contact Jonathan Riethmaier at jriethmaier@tash.org.

Advocacy 101: Responding to Advocacy Alerts TASH relies on the passion and persistence of its members to drive advocacy efforts throughout the U.S. From time to time, we ask TASH members to join us in petitioning Congress on issues and legislation that will advance equity, opportunity and inclusion for people with disabilities. Thank you to everyone

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B. Vote yes or no on a bill—this refers to bills coming before either the House or Senate for a vote. It is important during this time that you act fast to contact your Senators and Representative, as a vote may come within days. Understanding and responding to both types of requests is critical to our success. We hope all TASH members will continue to support TASH advocacy alerts, particularly as a number of wellfunded interest groups take opposing stances on legislation. You can always find the latest advocacy alerts on the TASH homepage. Just look for the Take Action box and click the link for details. THANK YOU for your support!

Take Action Online

Help Keep All Students Safe from Restraint and Seclusion in Schools Support Transition of Youth with Disabilities See All Action Alerts

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Association News Internships Available: Be a Part of a LifeChanging Learning Experience The TASH graduate and undergraduate internship program is designed to reflect the strengths and academic pursuits of each intern. TASH interns receive hands-on experience in areas that support the mission and vision of TASH while gaining skills and insights into public policy, marketing and communications, research, nonprofit management and many other areas. All TASH interns contribute in a meaningful way that advances the mission of TASH. Applicants from all academic disciplines are welcome to apply, but must be current part-time or full-time students. Internships are available for spring, summer and fall semesters and applications are accepted throughout the year. TASH provides flexible work hours between 20-40 hours per week. Students of diverse backgrounds and abilities are encouraged to apply. For more information and to apply for the TASH graduate and undergraduate internship program, contact us at info@tash.org or (202) 540-9020.

TASH Lowers Cost, Increases Flexibility of 2011 Webinars

Discovery: The Foundation of Customized Employment This series on Discovery will provide educators, adult service personnel and family members with the critical information necessary to facilitate discovery for persons with significant disabilities. This alternative to comparative assessment addresses the essential question so often overlooked by evaluations and tests, “Who is this person?” The sessions offer a comprehensive overview to discovery, the relationship to employment and transition from school to adult work, relevance to curricular outcomes and development of visual and written profile documents that capture the information learned during discovery.

Building Inclusive High School Communities The challenge of creating inclusive high school communities is complex. But as the gateway to adult life and independence, schools must address student-centered supports and opportunities for students with disabilities. Participants will learn about the supports and opportunities that enhance: Self-Advocacy, Differentiated Instruction and Universal Design for Learning, Youth Engagement, Relationship Building and Quality of Life. The material covered will help lay the foundation for enhanced opportunities for students with and without disabilities in the schools of tomorrow.

Cultural Competency: Engaging Underserved Populations

As part of TASH’s commitment to making educational and training content available for as many people as possible, several changes have been made to the existing webinar platform that will enhance accessibility and the user experience. Perhaps most importantly, we have significantly reduced the cost of viewing TASH webinars, making each webinar session available for as little as $35. We have also changed how the webinars will be viewed. Instead of one set time, TASH webinars will be available for a period of seven days! You can watch any webinar as many times as you want during that period. This is also a great option for educators and organizations who wish to provide TASH webinars to classes or staff. During the next several months, we will be rolling out three webinar series using this new webinar platform:

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TASH’s webinar series on Cultural Competency will arm educators, service providers, policymakers and administrators with the information, skills and strategies needed to understand and engage culturally diverse populations. Each session tackles the complex issues associated with cultural competency, from the fallacy of equating diversity with cultural competency, to implementing cultural competency within organizations. Participants will explore the interplay of values, policies, structures, attitudes and behaviors and how they affect the ability to understand, reach out to and effectively engage populations who have traditionally been underserved.

New Webinar Rates for 2011

TASH Members: $35 Individual, $65 Group Non-Members: $55 Individual, $85 Group The Discovery webinar series is expected to launch Summer/Fall 2011, and others will follow. For more information, visit www.tash.org or contact Haley Kimmet at hkimmet@tash.org or (202) 540-9015.

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TASH Membership

Form / Renewal

 Membership Renewal ID #__________

 New Membership " "

Referred By _________________________

Name _______________________________________________ Address (for delivery of mailed materials) ____________________________________________________________ City _________________________ State/ZIP __________________________ Home phone ( Work phone ( Cell phone (

E-mail address primary __________________________________

) ___________________

E-mail address secondary ________________________________

) ___________________

) ___________________

Membership Type Individual Member (please select one)

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections, TASH In Action bi-weekly newsletter, Member Discounts (TASH Store, Publications, Webinars, Conference and more)  Individual with Disability

 Household income less than $40,000

 Household income between $40-60,000  Household income between $60-80,000

 Household income between $80-125,000

$45

$45

 Household income greater than $125,000  Student Member

$45

$85

$125

$175 $215

(student membership is available for full-time students at accredited universities who are not

full-time professionals in their Þeld)

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections, TASH In Action bi-weekly

newsletter, Member Discounts (TASH Store, Publications, Webinars, Conference and more), Student Section enrollment Name of University _____________________________________________  Supporting Member

$250

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections, TASH In Action bi-weekly newsletter, Member Discounts (TASH Store, Publications, Webinars, Conference and more), The Advocate Donor Newsletter, Includes $125 membership fee plus $125 tax-deductible donation

- PAGE 1 OF 2 -


 Sustaining Member

$500

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections, TASH In Action bi-weekly

newsletter, Member Discounts (TASH Store, Publications, Webinars, Conference and more), Includes $125 membership fee plus $375 tax-deductible donation

Organizational Member (please select one)

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections, TASH In Action bi-weekly

newsletter, Member Discounts (TASH Store, Publications, Webinars) and up to Þve discounted Conference Registrations  Annual revenue less than $2 million

 Annual revenue between $2-5 million

 Annual revenue greater than $5 million

$285

$360

$435

Contact Name (required for Organization and Library Members) _______________________________  Library Member

$300

Member beneÞts: Annual subscription to RPSD, Annual Subscription to TASH Connections For libraries only, required for online access to the journal: Starting IP Address: ______________________ Ending IP Address: ______________________

What IP range do you want to upload? ______________________

Payment Type Funds must be submitted in U.S. dollars and checks must be drawn on a U.S. bank or an additional fee will be charged  Check (made payable to TASH)

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Authorized Signature _____________________________ Billing Address  Check here if same as shipping address _______________________________________________ City _______________ State/ZIP ________________

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E-mail the completed form to info@tash.org

Mail to: TASH

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Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates. The inclusive practices TASH validates through research have been shown to improve outcomes for all people.

Policy Statement It is TASH’s mission to eliminate physical and social obstacles that prevent equity, diversity and quality of life for children and adults with disabilities. Items in this newsletter do not necessarily reflect attitudes held by individual members of the Association as a whole. TASH reserves the right to exercise editorial judgment in selection of materials. All contributors and advertisers are asked to abide by the TASH policy on the use of people-first language that emphasizes the humanity of people with disabilities. Terms such as “the mentally retarded,” “autistic children,” and “disabled individuals” refer to characteristics of individuals, not to individuals themselves. Terms such as “people with mental retardation,” “children with autism,” and “individuals who have disabilities” should be used. The appearance of an advertisement for a product or service does not imply TASH endorsement. For a copy of TASH’s publishing and advertising policy, please visit www.tash.org.

w Individualized, quality supports in place of congregate and

segregated settings and services w Legislation, litigation and public policy consistent with the

mission and vision of TASH The focus of TASH is supporting those people with significant disabilities and support needs who are most at risk for being excluded from society; perceived by traditional service systems as most challenging; most likely to have their rights abridged; most likely to be at risk for living, working, playing and learning in segregated environments; least likely to have the tools and opportunities necessary to advocate on their behalf; and are most likely to need ongoing, individualized supports to participate in inclusive communities and enjoy a quality of life similar to that available to all people. TASH has a vision of a world in which people with disabilities are included and fully participating members of their communities, with no obstacles preventing equity, diversity and quality of life. TASH envisions communities in which no one is segregated and everyone belongs. This vision will be realized when: w All individuals have a home, recreation, learning and

employment opportunities w All children and youth are fully included in their

neighborhood schools w There are no institutions w Higher education is accessible for all w Policy makers and administrators understand the struggles of

TASH Mission & Vision As a leader in disability advocacy for more than 35 years, the mission of TASH is to promote the full inclusion and participation of children and adults with significant disabilities in every aspect of their community, and to eliminate the social injustices that diminish human rights. These things are accomplished through collaboration among self-advocates, families, professionals, policy-makers, advocates and many others who seek to promote equity, opportunity and inclusion. Together, this mission is realized through: w Advocacy for equity, opportunities, social justice and human

rights w Education of the public, government officials, community

leaders and service providers w Research that translates excellence to practice

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people with disabilities and plan – through laws, policies and regulations – for their active participation in all aspects of life w All individuals have a way to communicate and their

communities are flexible in communicating in alternate ways that support full participation w Injustices and inequities in private and public sectors are

eradicated w Practices for teaching, supporting and providing services to

people with disabilities are based on current, evidence-based strategies that promote high quality and full participation in all aspects of life w All individuals with disabilities enjoy individualized supports

and a quality of life similar to that available to all people w All individuals with disabilities have the tools and

opportunities to advocate on their behalf

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TASH Connections Winter 2011