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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.
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