Introduction

The birth of a child who is severely disabled is likely to have profound and far-reaching consequences for families. The consequences may be psychological. The stress involved in adapting to the child's condition and its long-term implications can be considerable - and may be compounded in battling for support from a confusing and often unhelpful array of 'helping' agencies. They may also be practical and physical. Severe disablement in a child will usually mean that the dependency of infancy is greatly prolonged. Hence there will be continuing demands on parents' time and energy: feeding, washing and dressing children who are unable to do these things for themselves; coping continuously with incontinence; lifting and carrying children who cannot move independently; stimulating children whose intellectual development is slow or who suffer sensory impairments; containing the behaviour of hyperactive or destructive children. These demands which tend to increase rather than diminish as children grow up, may have financial implications. Parents' earning capacity may suffer. Simultaneously the child's condition may create needs for extra or special expenditure of various sorts.