Published: 15 October 2018
Quality of life outcomes and costs associated with moving from congregated settings to community living arrangements for people with intellectual disability. An evidence review
The purpose of this review is to systematically evaluate the evidence on quality of life outcomes and costs associated with a move from a congregated setting to a community living arrangement for people with intellectual disability. The right to live independently in a place of one’s own choosing is a core value of the United Nations Convention on the Rights of Persons with Disabilities. Ireland is in the process of implementing a new phase in its efforts to reduce the reliance on institutional residential arrangements for people with intellectual disability. In particular, there has been a focus on moving people from what are widely referred to as ‘congregated settings’ (institutions with 10 or more residents) to ‘community living arrangements’ (where each unit contains no more than four residents). The Department of Health in Ireland requested this review to inform Ireland’s ongoing deinstitutionalisation process.
Although there is a large body of studies examining quality of life outcomes of residential moves by people with intellectual disability, small samples, a lack of systematic design, incomplete data, and variations in what was measured over different time frames mean that few studies were worthy of inclusion in a systematic review, and even fewer met the criteria for meta-analysis. Nevertheless, this evidence review does offer some support for the hypothesis that moving from an institutional residential setting to a community residential setting is associated with improved quality of life for adults with intellectual disability. There is no clear evidence on the cost-effects of residential moves, and few conclusions can be drawn for people who have highly specialised support needs. There were some findings suggesting that people with severe or profound intellectual disability either experienced a generally improved quality of life or experienced a lack of improvement, but not a deterioration in quality of life, following a move to a community setting.
There is a need for longitudinal studies – and agreed standardised variables and measures – that examine adequately sized representative samples of people with intellectual disability where there is the potential to gather baseline (pre-move) data; follow individuals at several time points; examine health-related, community participation, and life satisfaction variables; and control for the effects of changing health and independence needs. Comparison of cost-effects requires measurement from the broadest possible perspective, incorporating both formal (residential, health, and social care, out-of-pocket costs) and informal (unpaid carer) cost domains in ways that illuminate the relationships between specific types of residential settings and associated utilisation.