### 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 and ##### 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 #### 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). Although the extent to which people with severe disabilities are taught to become more self-determined varies considerably (if they are taught at all), promoting self-determination has been recognized as an important need since educational services for students with severe disabilities were mandated in the 1970s. This chapter discusses the importance of promoting self-determination for individuals with severe disabilities. Self-determination is considered both a process to apply and an outcome for individuals to achieve, which provides them with a means to identify their preferences and desires and become more active in managing and directing their own behavior. A brief historical overview is presented and is followed by a review of self-determination practices and concerns—in particular, self-determination as an evidence-based practice and the value of self-determination in gaining access to the general curriculum. Next, there is a discussion of the alignment of self-determination with TASH’s national agenda, as well as an examination of relevant legislation, mandates, and policies pertaining to self-determination. This chapter also addresses supporting self-determination in inclusive education, supporting the ongoing relationship between self-determination and opportunity, and promoting self-determination among youth from culturally diverse backgrounds. ##### 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. They are citizens with the same rights as all other citizens, and service providers need to respect the choices, wishes, and desires of the people they serve. In the first issue of the American Association for the Education of the Severely/Profoundly Handicapped Review, Williams, Brown, and Certo (1975) argued that the strategies used with students with severe disabilities resulted in students who were too externally controlled and cue dependent. Consequently, students are unable to appropriately respond, generalize, and transfer behaviors without external agents (i.e., teachers, paraprofessionals) present to deliver cues and consequences to them. Williams et al. suggested that students need to be taught how to provide their own cues, evaluate the quality of their responses, and self-correct inappropriate responding. Various studies over the years have advanced the self-determination initiative, affirming that students with severe disabilities often lack sufficient opportunities to make choices and decisions in their best interests. Educators traditionally decide what they think is best for these students, leading to a failure in promoting self-directed learning. ##### Realizing Self-Determination Self-determination involves several components that aid students in directing and regulating their own behavior. It is crucial that a learning environment for self-determination is created in which numerous opportunities and supports are provided so that students can develop a sense of urgency and learn that they can influence or manipulate their environments. ##### Current Practice, Concerns, and Challenges Self-determination has been shown to enhance positive academic, social, and adult outcomes for youth with disabilities. However, studies indicate that many students are not actively involved in their IEP processes and require instruction to develop self-determination skills. Instruction in self-determination is often not provided adequately, especially to students with severe disabilities. ##### Recommendations for Change Addressing self-determination among people with severe disabilities requires a recognition that individuals with severe disabilities can have preferences and make choices. Professionals must be responsive to different modes of communication to support individuals in realizing their potential for self-determination. Efforts to provide effective communication methods and the necessary training for both educators and individuals with disabilities are paramount for fostering self-determination. ##### Alignment with TASH National Agenda Service, placement, and support decisions should be based on individual preferences, choices, and wishes. There is an ongoing need for professionals to challenge assumptions about the abilities of individuals with severe disabilities to express their preferences and make choices. ##### Related Legislation, Mandates, Practices, and Policies Self-determination is recognized internationally and nationally as a civil right, influencing legislation such as the Individuals with Disabilities Education Improvement Act and the Rehabilitation Act. ##### Effect of Practice and Policy on Recommended Practices, Integrated Services, and Quality of Services and Supports Self-determination is crucial to empowering individuals with disabilities to advocate for their needs and preferences. Choice making is viewed as the foundational element of self-determination and must be integrated into educational practices to foster autonomy and self-regulation.