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

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.