Service use and costs of support twelve years after leaving hospital

There have been major changes in the provision and organisation of services for people with intellectual disabilities in England over the last thirty years, particularly deinstitutionalisation and the development of the mixed economy of care. The experiences of the people who participated in the Care in the Community Demonstration Programme in the mid-1980s provide evidence of the immediate and longer-term effects of reprovision policy. Methods Cross-sectional and longitudinal evidence was gathered on service use and costs for over 250 people twelve years after they left long-stay hospitals for community living arrangements. Comparisons were made with the situation in hospital, and one and five years after leaving. Relationships between costs after twelve years and individual characteristics assessed before people left hospital were explored. Results Community care at the twelve-year follow-up remained more expensive than hospital-based support, although the average cost was lower than at either of the one-year or five-year community follow-up points. Service users were living in a wide variety of accommodation settings. Management responsibility fell to NHS trusts, local authorities, voluntary agencies, or to private organisations or individuals. After standardising for users’ skills and abilities, costs in minimum support accommodation were significantly lower than in residential and nursing homes, costs in staffed group homes significantly higher, and costs in hostels slightly lower. When looking at differences between individuals, no relationship was found between costs and outcomes although, overall, people were better off in the community than they had been when in hospital.