Policy, service pathways and mortality: a 10-year longitudinal study of people with profound intellectual and multiple disabilities.
Closing big hospitals does not erase congregate care; you still have to build real community capacity.
01Research in Context
What this study did
Stancliffe et al. (2007) followed people with profound intellectual and multiple disabilities for ten years. They tracked where each person lived after a new policy closed all large hospitals and hostels.
The team counted who ended up in group homes, family homes, or still in congregate care. They wanted to see if the policy really ended institutional living.
What they found
Congregate care use actually grew from 38% to 43%. Family-based care also rose to 40% and group houses tripled, but day programs stayed center-based.
In short, the policy moved everyone out of big hospitals, yet many still lived in settings that looked institutional.
How this fits with other research
Mansell et al. (2010) later used these same numbers to argue that community living is best. They skipped the part that congregate use went up.
Faja et al. (2015) and Nøttestad et al. (2003) show another twist: medication use climbed after people moved. Less restrictive housing did not mean lighter drug loads.
Macdonall (1998) seems to disagree. One adult got sicker after leaving an institution. The difference: that case lacked support, while the 2007 cohort had some. Both papers warn that freedom without help can backfire.
Why it matters
When you plan a discharge, do not assume any community bed is good. Ask if the setting is truly dispersed and if staff can handle meds and health. Push for small homes near family, not large group sites that feel like mini-institutions.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2006.00884.x