Policy, service pathways and mortality: a 10-year longitudinal study of people with profound intellectual and multiple disabilities

Background: One hundred and forty-two children and adults with profound intellectual and multiple disabilities were identified in 1993 in a single Scottish region on whom detailed information was collected via a postal questionnaire survey. Methods: They were followed up in 2003. The time spanned represented a period of significant policy change in which community care and inclusive policies were implemented. Results: Of the original population of 142, 30 (21.1%) had died in the intervening period and two had left the area, allowing follow-up information to be collected on 110 individuals. While in line with policy, all those living in hospital and hostels in 1993 had been relocated by 2003 to community settings, a substantial proportion had moved into other forms of congregate care, notably nursing homes. Overall, the proportion in congregate care increased from 38% in 1993 to 43% in 2003. The second principal providers were family carers, with the proportion of those living at home also increasing from 33% to 40%. Provision in group houses increased from 6.3% to 15.5%. Day service provision remained based on a traditional centre-based model. The principal cause of death was respiratory disease. Survivors in 2003 were in 1993 more competent in personal self-help and motor abilities and were less likely to have epilepsy.