Twelve years on: the long-term outcomes and costs of deinstitutionalisation and community care for people with learning disabilities

In the mid-1980s the Department of Health sponsored a programme of demonstration projects to establish models of community care for long-stay patients living in institutions (Renshaw et al, 1988). This was known as the Care in the Community programme. Between 1986 and 1987 19 projects were established for elderly people with learning disabilities and people with severe and enduring mental health problems. An evaluation of these community services, their outcomes and costs was undertaken by the Personal Social Services Research Unit at the University of Kent at Canterbury (Knapp et al, 1992). Service users were assessed and their opinions ascertained before leaving hospital. Over 400 users who moved during the study period were followed up nine months later in the community, and outcomes and costs were compared. Five years later, two hundred and sixteen people with learning disabilities were followed up again in a study funded by the Joseph Rowntree Foundation (Cambridge et al, 1994). Here we report the 12-year follow-up of people with learning disabilities. The data were collected during 1998 and 1999. These combined studies represent the largest longitudinal study of deinstitutionalisation in learning disability and mental health in the UK and are also unusual in the extent to which they sought the views of service users themselves. There are few comparable studies anywhere else in the world.