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'He will finish up caring for me' : people with learning disabilities and mutual care

Until recently, the carer's perspective has dominated research on families who include someone with a learning disability and recent legislation has underlined the carer's rights. Previous research has found that some more able people with learning disabilities were very aware of their parents' growing needs, and were taking on responsibilities within the family to help and support their carer/parents. However, recent legislation still dichotomizes family members into carers and cared-for people. The present paper is based on a research study of the impact of the UK Carers Act 1995 on families with someone with a learning disability. It involved canvassing the views of people with learning disabilities about their experience of assessments and their relationships within the family. The present authors found that many people with learning disabilities expressed empathy for their carer's point of view and that several people (including some who had high support needs themselves) were performing care tasks for their elderly parents. However, no one appeared to recognize the situation as one of mutual care, and parents generally carried on defining themselves as carers since they took responsibility and exercised control. The present authors conclude that mutual caring is far more common than is recognized and includes people with severe learning disabilities. A more holistic approach to assessment of needs is required that can take into account the complex web of interdependence within a family. Rather than categorizing people into ‘carers’ and ‘cared-for’, the present authors suggest a model that recognizes mutually supportive partnerships within the family.

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British Journal of Learning Disabilities

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