Deinstitutionalization of People With Developmental Disabilities : A Review of the Literature

Ontario has recently closed its last 3 institutions for persons with developmental disabilities. Very little research has been conducted on Canadian deinstitutionalization projects, and the impacts and bona fides of such endeavours have not been well documented in Canada. However, the closing of institutions has occurred in most Western jurisdictions and has been the subject of much research in Australia, the United Kingdom, and the United States. Although community services are of variable quality, this literature review suggests that the Ontario plan to close institutional facilities in favour of community-based residential services will be of general benefit to former institutional residents. Contemplated from a distance, deinstitutionalization seems a benign and essentially decent government policy that high-mindedly brings back to the community those individuals with developmental disabilities who have lived through years of segregation in institutional settings. However, when institution closures hit closer to home, the reactions are much more visceral (Wente, 2005). Deinstitutionalization continues to be controversial (Parish, 2005; Taylor, 2001). Indeed, even in academia—among researchers—challenges arise over the integrity of research and the conclusions drawn (Felce 2006; Taylor & Wyngaarden Krauss, 2006; Walsh & Kastner, 2006). Moreover, ongoing litigation surrounds the closure of institutional settings (Ferleger & Boyd, 1980; Smith, 2005). There are, of course, legitimate interests at play here: Institutional closures may mean the loss of jobs, with a concomitant impact on local economies. Institution residents often have complex needs and have resided in such settings for decades, and many families are concerned for their welfare. For the people involved, and for those charged with welcoming former institutional residents, what are the challenges, and what might be the expected outcomes? In Canada, the deinstitutionalization of persons with developmental disabilities has been promoted by the federal government since the early 1980s with the publication of Obstacles by the House CANADIAN JOURNAL OF COMMUNITY MENTAL HEALTH 182 of Commons Special Committee on the Disabled and the Handicapped (Smith, 1981). In 2006, a total of 3,873 individuals were still living in institutional settings across Canada (Institution Watch, 2006). In Ontario, the provincial government made a commitment in 1987 to close the 16 residential institutions for adults with developmental disabilities within 25 years (Ontario Government, 2004). In September 2004, the province announced that the last three institutions, housing approximately 1,000 individuals, would close by March 31, 2009. In all, some 7,000 individuals have been transferred to community settings with the closure of Ontario’s facilities. Deinstitutionalization is not a policy particular to Canada. In the United States, institutional beds have gone from 194,650 in 1967 to 48,496 in 1999 (Taylor, 2001). In England, institutional beds have decreased from over 51,000 in 1976 to under 4,000 in 2002 (Emerson, 2004). Australia has experienced a similar trend (Young, Ashman, Sigafoos, & Grevell, 2001). In addition, people with developmental disabilities are increasingly residing in smaller residences. In 2006, fewer than 30% of adults in out-of-family placements in the United States resided in homes with more than six residents, and the number of individuals living in homes with fewer than four residents increased from 18,304 in 1996 to 195,450, in 2006 (Prouty, Lakin, & Coucouvanis, 2007). There is much and varied research on deinstitutionalization in the English-speaking world, but very little recent research in Canada. This present review was carried out by the administrator of an Ontario agency that is active in welcoming former institution residents. The author has published work on social role valorization (Lemay, 1995, 1999, 2006; Flynn & Lemay, 1999), a theory concerned with the enhancement of the social image and competencies of persons—including those with developmental disabilities—who are otherwise devalued. This theory is particularly sympathetic to community living. This review expands and updates one by Kim, Larson, and Lakin (2001), who reviewed U.S. research from 1980 to 1998 on the deinstitutionalization of people with developmental disabilities; their review extended an earlier study conducted by Larson and Lakin (1989). Kim et al. (2001) reported especially on adaptive and challenging behaviour domains, concluding that a move to the community was generally associated with an improvement in the former and a reduction in the latter. This review will update their findings and broaden the discussion to include other areas of concern—parent involvement, mortality, cost benefit, quality of life conditions and experiences, and social relationships—that are viewed as relevant to the Ontario initiative and discuss the challenges associated with the move to community living. THE METHOD OF THIS REVIEW The methodology of the present review is based on that of Kim et al. (2001). They reviewed 250 international studies, and their criteria (studies had to examine the move of a minimum of five adults from institutions to community residences through pre–post data gathering, basic demographic information, and measurements of adaptive and/or challenging behaviour) yielded 25 longitudinal studies and 12 contrast study groups that included approximately 3,800 participants. Kim et al. identified five