Fair shares? Supporting families caring for adult persons with intellectual disabilities

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.

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