On the edge

This report presents the findings of the first ever national survey in the UK, in which nearly 600 parents took part and which looked at the needs and circumstances of minority ethnic families caring for a severely disabled child. The quantitative survey was then compared with data on the circumstances and experiences of white families. Despite increased awareness of the needs, circumstances and experiences of families with a disabled child, and the acknowledgement of the need to tackle inequalities and barriers to access in recent NHS reforms, there has been little gain in health or improved access to services for minority ethnic groups. This report presents the findings of the first ever national survey in the UK, in which nearly 600 parents took part, which looked at the needs and circumstances of minority ethnic families caring for a severely disabled child. The quantitative survey was then compared with data on the circumstances and experiences of white families from an earlier survey. The authors highlight the key implications for services to help parents and their children - reducing social exclusion; meeting language, communication and information needs; and bridging and improving informal and formal support. On the edge will inform and influence managers and practitioners within health, education, social services and the voluntary sector about the particular needs and circumstances of minority ethnic families who are caring for a severely disabled child. It will also be a key resource for researchers and students in the fields of disability studies, social policy, social work, ethnic relations, health services research and related fields.