agran equity and full participation.pdf
Equity and Full Participation
for Individuals with Severe Disabilities
A Vision for the Future
edited by
Martin Agran, Ph.D.
University of Wyoming, Laramie
Fredda Brown, Ph.D.
Queens College, City University of New York, Queens
Carolyn Hughes, Ph.D.
Queens College, City University of New York, Queens
Carol Quirk, Ed.D.
Maryland Coalition for Inclusive Education, Hanover
Diane Ryndak, Ph.D.
University of Florida, Gainesville
Contents
About the Online Companion Materials ... vii
About the Editors ... viii
Contributors ... xi
Foreword David L. Westling and Barbara Trader ... xv
Preface ... xviii
Acknowledgments ... xxii
I Foundations
1 Disability in the 21st Century: Seeking a Future of Equity and Full Participation
Michael Wehmeyer ... 3
2 Poverty and Disability: Addressing the Ties that Bind
Carolyn Hughes and Latanya L. Fanion ... 25
3 Forty Years of Living and Thriving with Disabilities: Perceptions of a Self-Advocate and Her Family
Michelle Sommerstein, Lynn Sommerstein, Robert Sommerstein, David Sommerstein, and Diane Ryndak ... 41
4 Person-Centered Planning and the Quest for Systems Change
John O’Brien ... 57
5 Promoting Self-Determination and Self-Directed Learning
Martin Agran and Carolyn Hughes ... 75
6 Providing Respectful Behavior Supports
Fredda Brown and Linda M. Bambara ... 99
II Children and Youth
7 Early Intervention and Early Education
Lise Fox, Mary Frances Hanline, Juliann Woods, and Ann Mickelson ... 133
8 Inclusive Education and Meaningful School Outcomes
John McDonnell and Pam Hunt ... 155
9 Literacy and Communication
Susan Copeland, Elizabeth Keefe, and J.S. de Valenzuela ... 177
10 Social Interactions and Friendships
Erik W. Carter, Kristen Bottema-Beutel, and Matthew E. Brock ... 197
11 Access to the General Education Curriculum in General Education Classes
Fred Spooner, Bethany R. McKissick, Melissa E. Hudson, and Diane M. Browder ... 217
12 Serving Students with Health Care Needs
Donna Lehr ... 235
III Adult Outcomes
13 Ensuring Employment Outcomes: Preparing Students for a Working Life
Michael Callahan, John Butterworth, Jane Boone, Ellen Condon, and Richard Luecking ... 253
14 Postsecondary Education for Students with Intellectual Disabilities
Meg Grigal, Debra Hart, and Cate Weir ... 275
15 Evolving Narratives in Community Living
Lyle T. Romer and Pamela Walker ... 299
16 Serving an Elderly Population
Christine Bigby, Philip McCallion, and Mary McCarron ... 319
17 Medicaid Waivers and Medicare Support: A 21st-Century Perspective
Tom Nerney, Julie Marron, and Mike Head ... 349
IV A Look Around and Ahead
18 Societal Inclusion and Equity Internationally: Initiatives, Illustrations, Challenges, and Recommendations
Diane Ryndak, Deborah S. Reed, Grzegorz Szumski, Ann-Marie Orlando, Joanna Smogorzewska, and Wei Gao ... 371
19 Future Directions and Possibilities
Martha E. Snell and Virginia L. Walker ... 395
Index ... 415
About the Editors
Martin Agran, Ph.D., Professor, Department of Professional Studies (Special Education Program), University of Wyoming, Department 3374, 1000 East University Avenue, Laramie, Wyoming 82071
Dr. Agran received his Ph.D. from the University of Illinois at Urbana-Champaign. He has published numerous articles or chapters and has authored or edited 13 books. Dr. Agran served as a Fulbright Scholar in the Czech Republic and has guest lectured in Australia, Russia, and South Korea. His research interests include self-determination, secondary-level education for students with severe disabilities, and personnel preparation. He was the recipient of numerous awards, including Outstanding Research and Scholarship Award (University of Wyoming), Outstanding Research Award (Council for Exceptional Children, Division on Developmental Disabilities), Donald McKay Outstanding Faculty Research Award (University of Northern Iowa), Thomas Haring Research Award (TASH), and JASH Distinguished Reviewer (TASH). He is Editor-in-Chief of Research and Practice for Persons with Severe Disabilities and is a member of the TASH National Board of Directors.
Fredda Brown, Ph.D., Professor of Special Education, Educational and Community Programs, Queens College, City University of New York, 65-30 Kissena Boulevard, Queens, New York 11367
Dr. Brown received her Ph.D. from the University of Kansas. She is Director of the Queens College Regional Center for Autism Spectrum Disorders. Dr. Brown is the editor of five books and the author of numerous journal articles and book chapters relating to the education of individuals with severe disabilities. She has sat on the National Board of Directors of the Association for Positive Behavior Supports and TASH and has presented her work and ideas nationwide to professionals and families, advocating for positive, dignified, and effective methods of addressing the learning and behavioral needs of individuals with disabilities.
Carolyn Hughes, Ph.D., Visiting Professor, Queens College, City University of New York, 65-30 Kissena Boulevard, Queens, New York 11367
Dr. Hughes is Project Director of the Supports Intensity Scale–Children at the Research Foundation and Queens College of the City University of New York (CUNY). She received her Ph.D. from the University of Illinois at Urbana-Champaign. Dr. Hughes has published numerous books, chapters, and articles addressing social interaction and self-directed learning skills among high school students with disabilities and their peers and improving outcomes for youth from high-poverty backgrounds.
Carol Quirk, Ed.D., Co-executive Director, Maryland Coalition for Inclusive Education, 7484 Candlewood Road, Suite R, Hanover, Maryland 20176
Dr. Quirk directs the professional development services of the Maryland Coalition for Inclusive Education (MCIE). Before founding MCIE, she was Executive Director of a supported employment agency for adults with developmental disabilities and has provided consultation and strategic planning for other nonprofit organizations.
Diane Ryndak, Ph.D., Professor, School of Special Education, School Psychology, and Early Childhood Studies, University of Florida, 618 S.W. 12th Street, Post Office Box 117050, 1403 Norman Hall, Gainesville, Florida 32611
Dr. Ryndak has published numerous articles, chapters, and books and has worked extensively in inclusive education and access to the general curriculum for students with extensive support needs.
Promoting Self-Determination and Self-Directed Learning
Promoting self-determination, especially choice making, is a recommended practice. Failure to offer such opportunities and related instruction is considered neither in the best interests of the individuals served nor the individuals who support them (Agran & Hughes, 2005). This chapter discusses the importance of promoting self-determination for individuals with severe disabilities. Self-determination is both a process to apply and an outcome for individuals to achieve, enabling them to identify preferences and desires and to become more active in managing and directing their own behavior. It also reviews self-determination practices and concerns, especially its value in gaining access to the general curriculum. Similarly, the alignment of self-determination with TASH’s national agenda and examination of relevant legislation and policies are addressed.
Historical Antecedents
Self-determination has been valued and advocated since the early 1970s. Nirje (1972) indicated that individuals with intellectual disabilities have the right to self-determination. Williams et al. (1975) argued that strategies used with students with severe disabilities made them overly dependent on external cues. Early research prompted stakeholders to rethink their approach to education and service delivery.
Realizing Self-Determination
Self-determination, as a psychological construct, is related to successful performance and is associated with positive outcomes for youth with disabilities. Strategies aim to teach students to set goals, self-monitor, and problem-solve. The goal is to create an environment where opportunities for self-determination are abundant, helping students see themselves as causal agents who can influence their lives.
Current Practice, Concerns, and Challenges
Despite consensus on its importance, many students lack training in self-determination. Active involvement in IEP processes is minimal, and educators often do not provide necessary instruction. Addressing self-determination requires a realization that individuals, even those with limited verbal ability, can express preferences and make choices. Effective communication skills must be taught alongside self-determination strategies.
Recommendations for Change
Teachers and providers need to recognize the potential of individuals with severe disabilities to be self-determined. This involves teaching skills like goal setting and problem-solving, and providing opportunities for practice while respecting individual communication methods. Research shows that individuals with severe disabilities can learn self-determination strategies and that choice making is integral to this process.
Alignment with TASH National Agenda
All TASH national agenda items should emphasize individuals' rights to make choices and be heard, promoting self-determination as a means to access general curricula and enhance inclusive education.
Related Legislation, Mandates, Practices, and Policies
Self-determination is considered a right that must be respected and enacted. Legislation such as the Individuals with Disabilities Education Improvement Act (IDEA) emphasizes student involvement in planning. Ongoing efforts are needed to ensure that these rights are implemented and supported in practice.
Effect of Practice and Policy on Recommended Practices
The focus on self-determination has led to improvements in advocacy and decision-making among individuals with disabilities. Choice making is central to this movement and is seen as an essential part of education and service planning. However, it must be complemented by teaching additional skills needed for effective self-determination.
Current Research and Practice: Self-Determination, Environment, and Opportunity
Research highlights the need for opportunities in both educational and residential settings that facilitate self-determination. Studies show that inclusive environments positively influence self-determination skills, while restrictive settings limit these opportunities. More investigation into how environmental factors affect self-determination is warranted.