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Abstract
In this report I describe the results of a study undertaken between June 1986 and May 1987. During this period, I visited 50 families, all of whom had a disabled child between 12 and 16 years of age. I talked to them about the costs they incurred as a consequence of their children's disabilities. The study is quite narrowly focused on economic effects, attempting to tease out only those costs which would not have been incurred had there been no disability. I have been concerned with costs of two kinds: firstly direct costs, money actually spent on meeting the child's needs, and, secondly indirect costs, the income forgone by the family because of the child's special needs and dependency. These latter hidden costs arise because the child's dependency can in some cases prevent one or even both parents from full participation in the labour force. It may also inhibit job mobility or career advancement, and thereby earnings, for those who are able to work full time. It may affect long-term earning capacity by, for example, preventing a parent from undertaking further education essential to the pursuit or enhancement of a particular career.
Although this study concentrates on economic costs, parents and others caring for children with disabilities will know that the consequences are by no means exclusively economic. Neither are the economic consequences necessarily of greatest significance to family members. There are many ways in which a child's disability can affect a family. These are likely to vary considerably, according to the age of the child and his or her changing needs, and according to the circumstances of the family. There may also be social consequences, such as isolation of the family from the community, relatives and friends, or emotional consequences leading to the breakdown of marriages or the deterioration of other relationships within the family. There can be consequences for the health of family members, resulting from the physical and mental strain of caring for a disabled child. These effects are not felt equally by all family members.