Deinstitutionalisation and community living: Progress, problems and priorities

Abstract

Background Deinstitutionalisation of services for people with intellectual disabilities has become a focus of disability policy in many countries. Research for the most part supports this strategy. However, outcomes are not uniformly better for everyone who moves to community living. This paper explores reasons for variability in service quality and highlights important lessons for countries starting to modernise services.

Method The effects of deinstitutionalisation are summarised and emerging problems identified. The changing context of different welfare‐state models and paradigms in disability and public administration are outlined.

Results The main changes which have impacted on the implementation of deinstitutionalisation include: the rise of market‐based approaches to service provision, arrangements for rationing services, the “de‐differentiation” of intellectual disability services, and the rise of a rights‐based model in disability policy.

Conclusions The paper sets out priorities for the future development of community services. Success is likely to require a renewed focus on demonstrating improvement in the quality of life of people with intellectual disabilities and a change in the role of staff to provide more facilitative, enabling support of individuals, especially those with the most severe or complex disabilities.

Keywords:

• Deinstitutionalisation
• community living
• service quality
• outcome

Notes

1. Although governments complain that expenditure on disability is rising, arguably it is not rising at all. Apart from the effect of general population growth, apparent increases may be due to two other factors. First, the reclassification of unemployed people as disabled in order to reduce politically sensitive unemployment figures (Department of Work and Pensions, 2004). Second, the transfer of more of the cost of disability, hitherto borne by the family and the person with disabilities themselves, to the community. These costs, when borne by people with disabilities and their families, include lost years of life, lost opportunities and lost quality of life as well as the direct costs of disability.