TY - JOUR
T1 - "Starting to live a life"
T2 - Understanding full participation for people with disabilities after institutionalization
AU - Angell, Amber M.
AU - Goodman, Leah
AU - Walker, Heather R.
AU - McDonald, Katherine E.
AU - Kraus, Lewis E.
AU - Elms, Edward H.J.
AU - Frieden, Lex
AU - Sheth, Alisa Jordan
AU - Hammel, Joy
N1 - Funding Information:
This work was supported by National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grants 90DP0026 and 90DPAD0001. The writing of this article was made possible by support from NIDILRR Grant 90AR5023. The contents of this article represent the opinions of the authors and not necessarily those of the NIDILRR, the Administration for Community Living, the Department of Health and Human Services, or the federal government.
Publisher Copyright:
© 2020 American Occupational Therapy Association, Inc. All rights reserved.
PY - 2020/8
Y1 - 2020/8
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85087413638&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85087413638&partnerID=8YFLogxK
U2 - 10.5014/ajot.2020.038489
DO - 10.5014/ajot.2020.038489
M3 - Article
C2 - 32602442
AN - SCOPUS:85087413638
SN - 0272-9490
VL - 74
JO - American Journal of Occupational Therapy
JF - American Journal of Occupational Therapy
IS - 4
M1 - 7404205030p1
ER -