Conundrums of supported living: The experiences of people with intellectual disability

Abstract

Background Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships.

Our Homes: An inclusive study about what moving house is like for people with intellectual disabilities in Ireland

“…Freedom and exerting personal control across multiple life domains was strong among people in supported living among 34 people with intellectual disabilities in an Australian qualitative study (Bigby et al, ). Like Bigby et al () the IRN findings indicated some participants struggled to assert autonomy when support staff or family restricted choices.…”

“…Freedom and exerting personal control across multiple life domains was strong among people in supported living among 34 people with intellectual disabilities in an Australian qualitative study (Bigby et al, ). Like Bigby et al () the IRN findings indicated some participants struggled to assert autonomy when support staff or family restricted choices. In their comparison of people with intellectual disabilities living alone versus those in residential care, Bond and Hurst () found a clear preference for living alone given the greater experience of freedom, space and privacy.…”

“…Although seemingly intuitive, people need to get on well with their supporters. Participants in the Bigby et al, () qualitative study effectively described supporter characteristics comparable to those highlighted in the IRN project—being good at listening, having no personal agenda and holding positive aspirations for the person to live in the community. Similarly, in their cultural analysis of better group homes in Australia, Bigby and Beadle‐Brown () described the importance of personalised supports demonstrated through responsive, respectful relationships that naturally incorporated fun.…”

Comparing costs and outcomes of supported living with group homes in Australia

“…As many of these people were no longer their clients, it was uncertain how many letters actually reached the addressee. Many of the supported living participants were recruited from the earlier qualitative stage of the study, which had used a similar method of recruitment (as reported in Bigby, Bould, & Beadle-Brown, 2016). The criteria for inclusion were people aged 18 years or over, self-identification as a person with intellectual disability, in receipt of a disability service funded by the Department of Human Services, and a supported living arrangement (i.e., living alone, or with no more than two other people who were not parents or siblings, where housing and support were separated).…”

Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review

“…This limited progress is typically understood through the binary of presence and participation and explained as due to weak programme implementation or service design (Beadle-Brown, Bigby, & Bould, 2015;Mansell, Beadle-Brown, Whelton, Beckett, & Hutchinson, 2008). Commonly identified factors include poor staff practices, such as group-based outings and use of anonymous public spaces (Bigby, Clement, Mansell, & Beadle-Brown, 2009;Walker, 1995); inadequate staff training or supervision; misinterpretations of policy intent by staff (Beadle-Brown et al, 2015;Bigby & Wiesel, 2015;; or design problems such as omission of support for building social relationships (Bigby, Bould, & Beadle-Brown, 2016). suggest that lack of conceptual clarity may be an explanatory factor that impedes effective service design and delivery by hindering communication, understanding of goals and agreement among stakeholders.…”