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

  1. Foundations
    1. Disability in the 21st Century: Seeking a Future of Equity and Full Participation
    2. Poverty and Disability: Addressing the Ties that Bind
    3. Forty Years of Living and Thriving with Disabilities: Perceptions of a Self-Advocate and Her Family
    4. Person-Centered Planning and the Quest for Systems Change
    5. Promoting Self-Determination and Self-Directed Learning
    6. Providing Respectful Behavior Supports
  2. Children and Youth
    1. Early Intervention and Early Education
    2. Inclusive Education and Meaningful School Outcomes
    3. Literacy and Communication
    4. Social Interactions and Friendships
    5. Access to the General Education Curriculum in General Education Classes
    6. Serving Students with Health Care Needs
  3. Adult Outcomes
    1. Ensuring Employment Outcomes: Preparing Students for a Working Life
    2. Postsecondary Education for Students with Intellectual Disabilities
    3. Evolving Narratives in Community Living
    4. Serving an Elderly Population
    5. Medicaid Waivers and Medicare Support: A 21st-Century Perspective
  4. A Look Around and Ahead
    1. Societal Inclusion and Equity Internationally: Initiatives, Illustrations, Challenges, and Recommendations
    2. Future Directions and Possibilities

Promoting Self-Determination and Self-Directed Learning

Martin Agran and Carolyn Hughes

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, even though there is current interest in self-determination and educators are making committed efforts to enhance active student involvement in educational planning and decision making. 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 (the original name of Research and Practice for Persons with Severe Disabilities), 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 present to deliver cues and consequences. 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.

Mithaug and Hanawalt (1978) asked three adults to select the work tasks they preferred to investigate whether individuals with severe intellectual disabilities have preferences. The findings suggested that individuals with extensive support needs can consistently express preferences, which enhances motivation and increases productivity and task accuracy.

Realizing Self-Determination

Although there is general consensus regarding the value of self-determination (Agran & Hughes, 2005), there are varying definitions as to what it is and how it is manifested (Powers, 2006; Wehmeyer, 1998). Self-determination is a complex construct involving the interplay of several components. For some professionals, it is a desired outcome and similarly defined to outcomes relating to independence or success.

For others, it involves selected strategies that allow students to exert increased control over their learning experiences, directing and regulating their own behavior, independent of control by others.

Students with disabilities need to learn strategies that will allow them to problem-solve; retrieve, process, and synthesize information; and determine and direct their own behavior and learning. 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, as a psychological construct, is related to successful individual performance and personal volition, particularly for people with disabilities. It is associated with positive outcomes for youth with a range of disabilities. Self-determination strategies have demonstrated educational efficacy across a wide range of skills and have been well validated in literature.

These strategies aim to teach students to set appropriate goals for themselves, monitor their performance, identify solutions to problems, verbally direct their own behavior, reinforce themselves, or evaluate their own performance.

Individuals are seen as causal agents in affecting their own outcomes, which aligns with a model of self-determination. Achieving personal outcomes often requires the influence of others, especially for people with severe disabilities who typically require extensive support to fully participate in daily life activities.

The importance placed on students’ involvement in their educational decision making was established in the Individuals with Disabilities Education Act (IDEA) Amendments of 1997 (PL 105-17), mandating student inclusion in their individualized education program (IEP) meetings when planning for transitions from school to adult life.

Evidence-Based Practice

Accumulating evidence has shown that self-determination promotes positive academic, social, and adult outcomes for students with disabilities. Numerous studies have demonstrated the efficacy of curriculums aimed at promoting self-determination, helping students become active participants in decisions that affect their lives, and enhancing their overall academic performance.

Self-determination provides a critical pathway to enhancing inclusive education and community living based on person-centered planning and individual preference. Community living decisions are now increasingly influenced by person's preference regarding what they wish for in their support and services.

Alignment with TASH National Agenda

All TASH national agenda items are predicated on the assumption that service, placement, and support decisions are based on an individual’s preferences, choices, and wishes. There is a recognition that individuals with severe intellectual disabilities can learn to be self-determined, underscoring the need to enhance opportunities for self-determination.

Related Legislation, Mandates, Practices, and Policies

The recognition of self-determination as a right, supported at international and national levels, emphasizes the importance of enabling students with severe disabilities to have choices and opportunities to exercise those choices. In this way, the push for self-determination is systematic and integrated into educational planning and development.