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Policy, service pathways and mortality: a 10-year longitudinal study of people with profound intellectual and multiple disabilities
- Authors:
- HOGG J., JUHLBERG K., LAMBE L.
- Journal article citation:
- Journal of Intellectual Disability Research, 51(5), May 2007, pp.366-376.
- Publisher:
- Wiley
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. 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. 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. The findings are considered with respect to the extent to which they realize policy aspirations.
People with profound retardation and multiple handicaps attending schools or social education centres: interim report on the needs of their parents, foster parents and relatives
- Authors:
- HOGG J., et al
- Publisher:
- Royal Society for Mentally Handicapped Children and Adults
- Publication year:
- 1987
- Pagination:
- 110p., tables, illus., bibliogs.
- Place of publication:
- Manchester