ERIC Number: EJ756842
Record Type: Journal
Publication Date: 2007-May
Pages: 11
Abstractor: Author
ISBN: N/A
ISSN: ISSN-0964-2633
EISSN: N/A
Available Date: N/A
Policy, Service Pathways and Mortality: A 10-Year Longitudinal Study of People with Profound Intellectual and Multiple Disabilities
Hogg, James; Juhlberg, K.; Lambe, L.
Journal of Intellectual Disability Research, v51 n5 p366-376 May 2007
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. Conclusions: The findings are considered with respect to the extent to which they realize policy aspirations.
Descriptors: Multiple Disabilities, Nursing Homes, Death, Adolescents, Public Policy, Longitudinal Studies, Foreign Countries, Children, Adults, Mail Surveys, Residential Care, Caregivers, Family (Sociological Unit)
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Identifiers - Location: United Kingdom (Scotland)
Grant or Contract Numbers: N/A
Author Affiliations: N/A