Deinstitutionalisation and community living: position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities¹

Abstract

The gradual abandonment of large residential institutions1 and their replacement by small‐scale services to enable people to live well in the community has probably been the most significant policy development in intellectual disability in the post‐war period (Mansell and Ericsson, 1996). This process of ‘deinstitutionalisation’ is well advanced in Scandinavia, the United States of America, Canada, the United Kingdom, and Australasia. In these countries, the policy debate about whether to provide institutions or community services is largely resolved. The questions that remain are those of implementation and particularly of whether the kinds of supported accommodation that have been provided replicate institutional features and should themselves be reformed. For many other countries, the debate between institutional and community services has never been particularly important because most people with intellectual disabilities live with their families and services to support them are relatively undeveloped. In these countries, it should be possible to develop community‐based services directly, without going through a phase of institutional care. In a third group of countries, the dominant form of service provision remains institutional care and the question of whether and how to replace this remains a matter of debate. For example, many central and eastern European countries provide institutions of very poor quality and currently have proposals to renovate, upgrade and extend them using international funds instead of replacing them with services to support people in the community. The international legal framework sets out the right of disabled people to live in the community. The United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which came into force in May 2008, recognises this right through Article 19, which entails the provision of “a range of in‐home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” The Convention obliges states to develop community living that will replace institutional care through a process of ‘progressive realisation’. This requires states to take measures to the maximum of their available resources with a view to achieving progressively the full realisation of the rights involved. They must, therefore, move in the direction of realising the rights of disabled people but they are allowed to do so at a rate determined partly by the resources available to them. Good information is central to this process of reform and service development. People making decisions about the pace and scope of change, the kind of services needed and the organisation and management of those services are often faced with strongly‐held opinions from proponents of different service models. The purpose of this position statement by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disability is to set out concisely the evidence comparing institutional to community‐based services and to draw out the main implications for policy‐makers.