Disabled Children, Disabling Practices

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Abstract
One major thematic focus in the Social Welfare Research Centre has been family care of dependent relatives. To date empirical work has centered on family care of disabled elderly relatives (SWRC Reports and Proceedings Nos. 23 and 35) and this monograph was prepared to see if the caring issues, identified among families with elderly relatives, were similarly prevalent among families with handicapped young children. This research does this and more. Stuart Rees and Anneke Emerson from the Social Work Department at the University of Sydney prepared this monograph as part of a research contract issued by the SWRC. On three occasions over a twelve month period they interviewed 51 families to examine their use of health and welfare services for their severely handicapped young children. In addition they noted factors relating to the financial and non-financial costs involved in the caring situation. They found, not surprisingly, that parents (but especially mothers) have enormous and almost unbearable stresses on them if they attempt to care adequately for their severely handicapped young children. Such stress is compounded by the poorly structured and poorly co-ordinated service systems in health and welfare. The research shows, in addition to internal family pressures that the 'helping professionals' were not always very helping because they were too much tied up in their own professional worlds and that they operated in bureaucratic settings which did not facilitate co-ordinated activity. Rees and Emerson further found that the extra financial cost of caring at home for a severely handicapped child was almost triple the amount of the Handicapped Child's Allowance paid by the Department of Social Security, and in addition that this allowance was made available and administered with very little rationality or consistency. Two points stand out. First, co-operation between medical and non-medical services is inadequate to handle need and second, parents' ability to provide care in the home depends on the usefulness of non-medical services, yet these services take a shabby second place behind medical services, which themselves are not always appropriate in the circumstances. The authors conclude with a number of policy options relating to service organisation and co-ordination, and family support. This is a pioneering piece in an area in which there is virtually no Australian research. As such anyone hoping for a definitive report on issues relating to the care of handicapped children will not have their expectations met here. They will not, however, be disappointed for this study traces the background and provides valuable data on a small sample. In doing so it adds to our store of knowledge, and in the best of research traditions raises questions about directions for future research in this important area.
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Rees, Stuart
Emerson, Anneke
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Publication Year
1984
Resource Type
Working Paper
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UNSW Faculty
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download Reports and Proceedings No 37.pdf 5.02 MB Adobe Portable Document Format
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