Fair shares? Supporting families caring for adult persons with intellectual disabilities.
Adult ID services still hand out help based on client dependency alone, missing carer factors that quietly decide who actually gets support.
01Research in Context
What this study did
McConkey (2005) asked family carers what help they get for their adult son or daughter with intellectual disability.
Only the adult’s level of need predicted who got services. Carer age, income, or stress did not.
What they found
Many carers had unmet needs. The system ignored everything except how dependent the adult was.
Two carers with equally disabled sons could get very different help if one lived in a rich area and one in a poor area.
How this fits with other research
Tavassoli et al. (2016) later showed carers who feel “no-one else can do it” burn out faster. R’s data did not check this belief, so the real gatekeeper may be carer mindset, not just client need.
Lee et al. (2024) found English kids with the same disability level were less likely to get education plans if they lived in poor areas. The same postcode lottery seen in R’s adults shows up in children ten years later.
Kuenzel et al. (2021) tracked U.S. adults trying to control their own funding. Older adults and those in group homes got less money, again showing non-clinical rules decide who is helped.
Why it matters
When you write an assessment, list carer stress and beliefs, not just client behaviors. Push for flexible budgets that look at family context, not just diagnosis. One extra question about “who else could help” may open doors your client never reached before.
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02At a glance
03Original abstract
BACKGROUND: Although the majority of adult persons with intellectual disabilities are cared for by their families, remarkably little is known of the characteristics of their carers, the support services they receive and their unmet needs. A particular concern is whether or not carers have equitable access to services. METHOD: Information was gathered from service staff who knew best the person with the disability. A standard pro forma was used with a representative sample of over 1500 family carers in Northern Ireland (26% of the estimated population). RESULTS: Nearly half of the people were being cared for by both parents, but around one third lived with lone carers and 20% with another relative. These subgroups of carers varied significantly in their personal characteristics and in terms of the person for whom they cared. However, Regression Analyses identified that their relative's higher dependency in person care was the only common variable that was predictive of carers' access to support services. A possible measure of unmet need for various support services was derived. CONCLUSIONS: Services need to pay greater attention to the characteristics of family carers so as to overcome some of the present inequities in supports offered to them. Further areas for future research are identified.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00697.x