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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    • "Repeatedly studies demonstrate that community-based services are superior to congregate arrangements, demonstrating the benefits of community living (e.g.,Cocks, Thoresen, Williamson, & Boaden, 2014;Stainton et al., 2011;Stancliffe & Lakin, 2005;Stancliffe et al., 2007;Taleporos et al., 2013;Walsh et al., 2010). That said, there continues to be variability in results across residential models suggesting that there are factors beyond the type of residential support that are significant in determining outcomes (Kozma et al., 2009;Walsh et al., 2010). The findings of the present analysis support this claim. "
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    ABSTRACT: Home sharing is a fast-growing residential option in British Columbia (BC), Canada; yet little empirical research exists specific to home sharing. In BC, home sharing is defined as a living situation when one or more adults with an intellectual disability share a home with another person or unrelated family who is paid to provide residential and, at times, additional support as needed. The authors report the findings of a qualitative study exploring home sharing and the factors that contribute to quality home sharing. Guided by interpretive description, a qualitative method, individual interviews exploring participants’ experiences of home sharing were conducted with 68 individuals (22 individuals with ID, 33 home share providers, and 13 family members). Constant comparison was used to analyze the data. Key factors to perceived instances of successful home sharing included (1) finding a good match between the individual with ID and the provider, (2) engaging in proactive planning, (3) ensuring effective supports to maintain the sustainability of the home share that promotes balancing the independence of and support for the individual, and (4) being attuned to the relational dynamics among all stakeholders. The findings have implications for implementing policies and practices pertaining home sharing. The authors conclude that emphasis should be put on flexible and appropriate residential supports that address the person's changing needs where the home share relationship facilitates the individual's healthy lifestyle, well-being, independence, valued social roles, and social inclusion. Additionally, a clearly articulated system of monitoring to ensure safety should be part of all home share arrangements subject to the wishes of the individual with ID.
    No preview · Article · Dec 2015 · Journal of Policy and Practice in Intellectual Disabilities
    • "In parallel with normalization, recognition that segregation could not produce a 'good' or 'normal' life (Johnson et al. 2010) led to deinstitutionalization and the shift to community living, often in small group homes (Bradley et al. 1994). However, whilst community living had undoubtedly been a positive step towards a better life for many people with intellectual disability (Kozma et al. 2009), the failure to offer adequate support for community engagement or the development of relationships has more often meant people are physically present rather than socially included in communities (Bigby 2008; MacIntyre 2008). Similarly, social integrationist approaches that sought to build inclusion through employment have had limited success, and the economic participation of people with intellectual disability remains remarkably low (OECD, 2010). "
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    ABSTRACT: Background: Stigma attached to having an intellectual disability has negative implications for the social identities and inclusion of people with intellectual disability. Aim: The study explored the effects of membership of independent self-advocacy groups on the social identity of people with intellectual disability. Method: Using a constructivist grounded theory methodology, semi-structured interviews were conducted with 25 members of six self-advocacy groups which varied in size, resources, location and policy context: two based in the Australian states of Victoria and Tasmania and four in the UK. Results: Collegiality, ownership and control by members characterized groups. They gave members opportunities for paid or voluntary work, skill development and friendship which contributed to their confidence and engagement with life. Possibilities for new more positive identities such as being an expert, a business-like person, a self-advocate and an independent person were opened up. Self-advocacy is an important means of furthering social inclusion of people with intellectual disability.
    No preview · Article · Oct 2015 · Journal of Applied Research in Intellectual Disabilities
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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.
    Full-text · Article · May 2015
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