Service use and costs of support twelve years after leaving hospital

Background: There have been major changes in the provision and organization of services for people with intellectual disabilities in England over the last 30 years, particularly deinstitutionalization 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 the reprovision policy. Methods: Cross-sectional and longitudinal evidence was gathered on service use and costs for over 250 people 12 years after they left long-stay hospitals for community living arrangements. Comparisons were made with the situation in hospital, and 1 and 5 years after leaving. Relationships between costs after 12 years and individual characteristics assessed before people left hospital were explored. Results: Community care at the 12-year follow-up remained more expensive than hospital-based support, although the average cost was lower than at either of the 1- or 5-year community follow-up points. Service users were living in a wide variety of accommodation settings. Management responsibility fell on National Health Service (NHS) trusts, local authorities, voluntary agencies, or to private organizations or individuals. After standardizing for users’ skills and abilities, costs in minimum support accommodation were significantly lower than those 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. Conclusions: Reprovision planning for hospital and other institutional modes of care requires major and long-term commitment of resources. Quality of life improvements can be achieved at a cost little different in the long-run from that for hospital care. The link between needs and costs (reflecting the services intended to meet those needs) would be made stronger through the individualization of care