Parents as Care Managers

The inclusion of disabled children as a category of "children in need" under the Children's Act 1989 and as eligible for assessments of need under the NHS and Community Care Act 1990 has drawn renewed attention to this client group. The study explores the probable gap between the eminently reasonable and well argued proposals for care provision under new legislation and experiences of those caring for a disabled child; Cerabal Palsy was chosen in this text as an example of a severly disabling condition. A range of research methods are used including child observation and semi-structured interviews to obtain the views of parents. It provides a critique of community care policy, provision and practice including interdisciplinary collaboration between health, education and social services. Attention is paid to the growing participation of the voluntary and private sectors in caring for diabled children. Perspectives of users and carers are prioritized providing detailed evidence of consumer opinion, and attention is drawn to controversial issues including questions of normalization and inclusion of diabled children within society, and dangers of alternative treatment approaches. It offers proof that considerations of cost and efficiency are inadequate measures for evaluating community care.