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Families with a member with intellectual disability and their needs 

Families with a member with intellectual disability and their needs
Chapter:
Families with a member with intellectual disability and their needs
Author(s):

Ann Gath

and Jane McCarthy

DOI:
10.1093/med/9780199696758.003.0250
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date: 24 October 2020

Having a child with intellectual disability is a major and usually totally unexpected blow to any family. However, most families show great resourcefulness and adapt to give their normal child as well as themselves a happy, rewarding life. Parents strongly resent being treated as potential psychiatric patients and have vigorously thrown out the concept of ‘the handicapped family’. They do suffer understandable grief. From the point of discharge, the encouragement of informal support is more useful than providing hospital-based services. Children with all sorts of disability go to school early and the provision of unobtrusive familiar services is helpful. Unfortunately, there is often a gap in services between children's services and those for older adolescents and adults. The gap occurs at the worst time for parents who of all times require a familiar knowledgeable person who can offer a service throughout the transition period. The services required by the parents are practical help, such as appropriate equipment, respite care, advice about behaviour, and the ability to find emergency or specialized help at short notice. Parents also require some notice to be taken of their increasing age and/or infirmity, the financial difficulties arising out of the disability, and their anxiety that a humane plan can be made for their son or daughter when they die.

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