Alisa Jordan Sheth1, Katherine E McDonald2, Louis Fogg3, Nicole E Conroy4, Edward H J Elms5, Lewis E Kraus6, Lex Frieden7, Joy Hammel8. 1. Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago, 1919 W Taylor St. (MC811), Chicago, IL, 60612, USA. Electronic address: ajorda25@uic.edu. 2. Falk College of Sport and Human Dynamics, Syracuse University, 444 White Hall, Syracuse, NY, 13244, USA. Electronic address: kemcdona@syr.edu. 3. Department of Community, Systems, and Mental Health Nursing, Rush University, 600 S. Paulina St., Chicago, IL, 60612, USA. Electronic address: louis_fogg@rush.edu. 4. Department of Leadership and Developmental Sciences, University of Vermont, Mann Hall, 208 Colchester Ave. Burlington, Vermont, 05405, USA. Electronic address: Nicole.conroy@uvm.edu. 5. Southwest ADA Center, TIRR Memorial Hermann, 1333 Moursund St., Houston, TX, 77030, USA. Electronic address: edwardhjelms@gmail.com. 6. Pacific ADA Center, 555 12th Street, Suite 1030, Oakland, CA, 94607, USA. Electronic address: lewisk@adapacfic.org. 7. Southwest ADA Center, TIRR Memorial Hermann, 1333 Moursund St., Houston, TX, 77030, USA. Electronic address: lfrieden@bcm.edu. 8. Departments of Occupational Therapy and Disability and Human Development, University of Illinois at Chicago, 1919 W Taylor St. (MC811), Chicago, IL, 60612, USA. Electronic address: hammel@uic.edu.
Abstract
BACKGROUND: Legislation and court decisions in the United States mandate the right to least restrictive community living and participation for people with disabilities, yet little research has examined differences in participation across institutional and community settings, or over time in the community post-transition. OBJECTIVE: As part of a multi-site participatory action research project examining participation, we examined the differences in quality of life in institutional and community living environments among people with disabilities. METHODS: We conducted surveys with adults with disabilities between 18 and 65 years-old that transitioned from institutions to the community in the United States within the last five years. This paper reports on findings for a diverse sample of 150 participants. RESULTS: We found significant differences between ratings of institutional and community experiences, with increased reports of satisfaction, personal safety, service access, and participation in community settings. We also found significant improvements in community integration and inclusion after transition to community living, although barriers to transportation and activity access often remained. CONCLUSIONS: This study of insider experiences of previously institutionalized people with disabilities illuminates important understandings of community participation, integration, and quality of life for the disability community in the United States.
BACKGROUND: Legislation and court decisions in the United States mandate the right to least restrictive community living and participation for people with disabilities, yet little research has examined differences in participation across institutional and community settings, or over time in the community post-transition. OBJECTIVE: As part of a multi-site participatory action research project examining participation, we examined the differences in quality of life in institutional and community living environments among people with disabilities. METHODS: We conducted surveys with adults with disabilities between 18 and 65 years-old that transitioned from institutions to the community in the United States within the last five years. This paper reports on findings for a diverse sample of 150 participants. RESULTS: We found significant differences between ratings of institutional and community experiences, with increased reports of satisfaction, personal safety, service access, and participation in community settings. We also found significant improvements in community integration and inclusion after transition to community living, although barriers to transportation and activity access often remained. CONCLUSIONS: This study of insider experiences of previously institutionalized people with disabilities illuminates important understandings of community participation, integration, and quality of life for the disability community in the United States.