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UBC Theses and Dissertations

Deinstitutionalization and community living services for persons with developmental disabilities : validation of a proposed model for providing wheelchair seating Chisholm, Jo-Anne Merinda

Abstract

In British Columbia (BC), people with developmental disabilities, including those with severe physical impairments, have left institutions to live in supported homes in the community. Services traditionally provided in the institution, up until final closure in 1996, are now provided in community. One of the necessary, specialized community services identified during the final deinstitutionalization phase from 1990 to 1996 was therapeutic wheelchair positioning or 'seating'. In 1996, a study was contracted by the Transition Steering Committee (TSC), a group responsible for ensuring the availability of services in the community for persons leaving institutions. The study defined the need for seating services, determined client and therapist preferences and reviewed existing seating resources, in order to develop a workable service delivery model for adults with developmental disabilities in B C . The model conceived in 1997, but never implemented, was that of a boundaryless service network termed the British Columbia Seating Network (BCSN). In order to understand the context of community living service development for this population (including barriers to implementation of new programs) as well as to confirm that the proposed model of service delivery still satisfied the prospective users of the BCSN, qualitative investigative activities were undertaken. Following from the research of the original project, three key stakeholder groups were identified - consumers, community therapists and provincial government administrators. The perspective of the consumer was investigated through an interview with the executive director of the British Columbia Association for Community Living (BCACL); community therapists attended focus groups; and relevant government administrators, including members of the TSC, were interviewed about the deinstitutionalization experience in B C , as well as the status of evolving community living services, including the proposed BCSN. Results indicated that, while most participants believed that deinstitutionalization had been an overall success, there were many challenges facing community living services, and the determinants to success or failure were often political in nature. Participants collectively praised the BCSN, yet analysis of findings indicated that the model was ultimately doomed to failure because of poor timing, lack of profile or of a champion, an all or nothing approach which encompassed a preference for generic over specialized service, sustainability, the tenuous relationship between research and policymaking, the destabilizing effect of change, as well as other influential aspects of the political decision-making process during the final stages of deinstitutionalization. Other themes which arose out of the findings included the fear of reinstitutionalization, the lack of planning for aging in place and for new users of community living services, and the pivotal and evolving role of interest groups. Finally, a future focus for stakeholders in community living in B C was articulated as ensuring that families in community would not be forgotten because the high profile that deinstitutionalization had given persons with developmental disabilities was gone. It was concluded that the B C S N was the right model, but that political barriers had ultimately prevented implementation, and that all stakeholders in community living need to be aware of the multiple and complex influences contributing to decision-making around the development of health services for persons with developmental disabilities.

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