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.
Table of Contents
Part 1. Cerebral Palsy. 1. Cerebral Palsy: The Clinical Condition. 2. Cerebral Palsy: Clinical and Social Aspects of the Condition. Part 2. Families and Health Care Services. 3. Government Health Policy. 4. Families and the NHS Professionals. 5. Families and Assessment by a Child Development Team. 6. Families and Alternative Approaches to Treatment. Part 3. Families and the Education Service. 7. Developing a Special Education System. 8. Pre-School Education. 9. Choosing between Mainstream and Special Education. 10. Families and Conductive Education: a Case Study of a Private Resource. Part 4. Families and the Personal Social Services. 11. Local Authority Social Services Departments. 12. Families and Local Authority Social Workers. 13. Families and the Voluntary and Private Sectors.
’...a detailed account of a comprehensive study that describes far-reaching implications for all those who care for children with cerebral palsy...a highly compassionate book that has implications for practitioners, researchers and policy makers.’ Family Practice ’...appealing to an (inter) professional readership...the book indicates the variability and complexity of the caring perspective which is probably the most enduring legacy of the range of studies and personal accounts which marked the last decade.’ British Journal of Social Work ’...successfully unravels the complicated and emotionally stressful lives of families with a disabled child...a useful starting point for tackling the plethora of unmet needs for this vulnerable group.’ Children and Society ’The style is easy to read and liberally interspersed with extracts of interviews with parents...It is a useful book...’ British Journal of Occupational Therapy