Outcomes in Different Residential Settings for People With Intellectual Disability: A Systematic Review

University of Kent, Tizard Centre, Canterbury, Kent, UK.
American Journal on Intellectual and Developmental Disabilities (Impact Factor: 2.08). 06/2009; 114(3):193-222. DOI: 10.1352/1944-7558-114.3.193
Source: PubMed


Large-scale reviews of research in deinstitutionalization and community living were last conducted about 10 years ago. Here we surveyed research from 1997 to 2007. Articles were included if the researchers based the study on original research, provided information on the participants and methodology, compared residential arrangements for adults with intellectual disability, and were published in English-language peer-reviewed journals. Sixty-eight articles were found. In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes.

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    • "The largest group in residential care comprises people with intellectual disabilities. Comparative research on outcomes from living in the community rather than congregate settings consistently finds benefits in inclusion, participation, and quality of life, and lower risk of abuse and neglect (Kozma et al., 2009; Robinson & Chenoweth, 2011), which contribute to effectiveness and even cost efficiency (Johnson, 1998a, 1998b). People who have lived in institutions and move into the community also experience these benefits, as long as sufficient quality and quantity of housing support, staff management, and funding are provided (Walsh et al., 2010; Young & Ashman, 2004). "
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    ABSTRACT: Closure of the remaining institutions where some people with intellectual disabilities live is increasingly urgent following the Australian Government commitment to the United Nations Convention on the Rights of Persons with Disabilities, the National Disability Strategy, and the full National Disability Insurance Scheme. How can the transformative opportunities that this new policy context opens for people leaving institutional care be realised? This article analyses the rights of people leaving institutions by drawing on the data from an evaluation of the closure of three New South Wales institutions and the related development of four new facilities. The closures aimed to achieve a better quality of life but results were mixed. While participation, growing and learning, health and wellbeing, social relationships, and autonomy improved for some people, results were not consistent between sites and in some cases people were actually worse off than before. Community inclusion was not the focus of the closures and social isolation negatively affected the quality of life of people who were relocated. The implications are that remaining closures must apply a rights-based framework rather than building new facilities to meet legislative rights obligations. This includes: taking a person-centred approach to housing support; using closure as a transformative opportunity for community living; identifying people’s choices through informed supported decision-making; applying sophisticated change management with families, staff and unions; and using the resources, expertise and successful closure experiences from the disability community to inform the process and opportunities for housing support. Applying the framework could draw on Australian and international evidence and experience.
    • "Such findings are consistent with literature reporting poorer outcomes for people with more severe levels of intellectual disability living in community environments (e.g. McConkey et al. 2005; Baker 2007; Kozma et al. 2009). Further research is needed to help better understand how people with more severe intellectual disability may be supported to achieve better connections and participation. "
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    ABSTRACT: Background The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults.Materials & Methods Data were drawn from the IDS-TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored.ResultsResidence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts.Conclusions Community-dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland.
    Journal of Applied Research in Intellectual Disabilities 04/2015; DOI:10.1111/jar.12159 · 1.38 Impact Factor
    • "Second, despite the shift from segregated facilities to community-based housing, limited progress has been made in terms of meaningful community participation of people with intellectual disability, whose social networks remain mostly limited to family, coresidents and paid staff (Kozma et al., 2009; Verdonschot et al., 2009). Third, many other people with intellectual disability experienced a process of 'transinstitutionalisation', moving out of state-run institutions only to enter other institutions or institutional settings such as shelters, prisons, nursing homes or psychiatric hospitals, where the practices and cultures of large institutions—such as regimentation and material deprivation—are still thriving and quality of life for residents is very poor (Drake, 2013). "
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    ABSTRACT: This article reviews four decades of deinstitutionalisation policies in three Australian states, New South Wales, Victoria and Queensland. It seeks to understand the factors influencing the slow and haphazard progression of the movement and its more contested outcomes such as the redevelopment of some institutions and their replacement with other congregate or cluster housing models that are at odds with the original visions of community care and normalisation. The article highlights the consistent and effective opposition to deinstitutionalisation from some families of institution residents, and the shifting policy frameworks and ideologies—from ‘normalisation’ to ‘choice’—in which it progressed. In particular, the article highlights the intersections between deinstitutionalisation and urban policy. The article is based on a review of existing scholarly literature, policy documents, inquiry reports and media sources.
    Urban Policy and Research 02/2015; 33(2):1-17. DOI:10.1080/08111146.2014.980902 · 0.57 Impact Factor
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