"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization

Amber M Angell; Leah Goodman; Heather R Walker; Katherine E McDonald; Lewis E Kraus; Edward H J Elms; Lex Frieden; Alisa Jordan Sheth; Joy Hammel

doi:10.5014/ajot.2020.038489

"Starting to Live a Life": Understanding Full Participation for People With Disabilities After Institutionalization

Am J Occup Ther. 2020 Jul/Aug;74(4):7404205030p1-7404205030p11. doi: 10.5014/ajot.2020.038489.

Authors

Amber M Angell¹, Leah Goodman², Heather R Walker³, Katherine E McDonald⁴, Lewis E Kraus⁵, Edward H J Elms⁶, Lex Frieden⁷, Alisa Jordan Sheth⁸, Joy Hammel⁹

Affiliations

¹ Amber M. Angell, PhD, OTR/L, is Research Assistant Professor, Department of Occupational Therapy, University of Florida, Gainesville. At the time of the study, she was Postdoctoral Fellow, Department of Occupational Therapy, University of Illinois at Chicago.
² Leah Goodman, OTD, OTR/L, is Visiting Clinical Instructor, Department of Occupational Therapy, University of Illinois at Chicago.
³ Heather R. Walker, PhD, is Social Scientist, University of Utah Health, Salt Lake City. At the time of the study, she was Research Assistant and Teaching Assistant, Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago.
⁴ Katherine E. McDonald, PhD, is Professor, Falk College of Sport and Human Dynamics, Syracuse University, Syracuse, NY.
⁵ Lewis E. Kraus, MPH, MCP, is Co-Director, Pacific ADA Center, Oakland, CA.
⁶ Edward H. J. Elms, MD, MS, is Senior Mentor, University of Toronto, Toronto, Ontario, Canada. At the time of the study, he was Doctor, Southwest ADA Center, Houston, TX.
⁷ Lex Frieden, MA, LLD (Hon), is Professor of Biomedical Informatics, University of Texas Health Science Center at Houston.
⁸ Alisa Jordan Sheth, PhD, OTR/L, is Assistant Professor, School of Occupational Therapy, Pacific University, Hillsboro, OR. At the time of the study, she was PhD Candidate, Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago.
⁹ Joy Hammel, PhD, OTR/L, FAOTA, is Professor, Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago; hammel@uic.edu.

Abstract

Importance: A key objective of the Americans With Disabilities Act of 1990 (ADA) is community integration; yet, nearly 30 yr later, little is known about the participation of people with disabilities who transition from institutions to the community.

Objective: To understand how people with disabilities describe full participation after transitioning from an institution to the community and to identify environmental barriers and facilitators to participation during and after this transition.

Design: The ADA-Participatory Action Research Consortium (ADA-PARC), a collaboration among researchers, people with disabilities, and community organizations, is implementing a multimethod, participatory action research study of participation among people with disabilities posttransition. This article presents qualitative findings from semistructured interviews collected as part of the larger ADA-PARC project.

Setting: ADA-PARC community partners across the United States.

Participants: One hundred fifty-three adults with disabilities.

Outcomes and measures: We used a semistructured interview guide to ask participants about their experiences during and after transition to the community.

Results: We identified four themes: (1) the process of transition as ongoing rather than a single event, (2) access to everyday occupations as full participation and what fully represents "living a life," (3) environmental barriers to participation, and (4) social identity as participation as the transformative process of moving from the disempowering isolation of the institution to being integrated into the community.

Conclusions and relevance: As people with disabilities transition into community settings, they require ongoing supports to facilitate their full, long-term participation.

What this article adds: People with disabilities reported that transitioning from institutions to the community was itself not enough to support their full community participation; rather, they viewed transition as an ongoing process, and they needed services and supports to fully participate. Occupational therapy practitioners working in institutional and community settings can partner with local disability advocacy communities to support their clients' sense of identity and self-confidence during and after transition to the community.

MeSH terms

Adult
Community Participation
Disabled Persons*
Humans
Institutionalization
Occupational Therapy*
Organizations
United States

Grants and funding

U48 DP000026/DP/NCCDPHP CDC HHS/United States