Parents as Care Managers : The Experiences of Those Caring for Young Children with Cerebral Palsy

First published in 1999, this volume examines the inclusion of disabled children as a category of children in need under the Children Act 1989 and as eligible for assessments of need under the NHS and Community Care Act 1990 has drawn renewed attention to the plight of these children and their families. This book presents the findings from a study of parents whose child has cerebral palsy. The research undertaken at the cost of social policy change focuses on the apparent gap between the well-argued proposals for community care and the experiences of carers. A bewildering picture emerges of inadequate services and treatments from the health, education and social services in the public, voluntary and private sectors. Parents experience isolation and stress as they explore ways to improve the quality of their children’s lives by experimenting with unregulated and under-researched treatments for an incurable physical condition. The conclusion that there has been deterioration in provision for these families is a serious indictment on current social policy direction.