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For a range of reasons, many disabled children need attention during the night (Atkinson and Crawforth 1995; Haylock, Johnson and Harpin 1993; Roberts and Lawton 2001; Sloper and Turner 1992), and this can result in disrupted sleep not only for the main caregiver but also for other members of the household. The literature describes graphically the ongoing and long-term nature of the caring commitments. Although some children’s needs for care and assistance are undoubtedly reduced as they mature, for large numbers this is not the case.

1996). It is crucial not to underestimate the eroding nature of this level of stress on those parents who experience it over substantial periods as their children grow towards adulthood. It is also important to be aware of the fact that those who do not have a little extra money to buy in something that makes life easier or more enjoyable for children or adults, or who cannot afford decent transport or housing adaptations, frequently have only their own resilience, energy and muscle power to fall back on yet again.

The Audit Commission (2003) reports that waiting times were frequently so lengthy that children had outgrown the provision or had missed an essential opportunity for the enhancement of their development. Services are also delivered by a range of specialists working within organisational systems of baffling complexity. There are problems associated with coordination and joint planning between key agencies and disciplines at all levels and an ever-present danger that disabled children and their parents fall through the gaps or become marginalised.

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