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The Oration: Ageing And Disability: Toward A Unifying Agenda

From: Australian Disability Review
Creator: Irving Kenneth Zola (author)
Date: 1988
Publication: Australian Disability Review
Source: Available at selected libraries

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As feminists have long pointed out, this further feminisation of support services may turn out to be an adjunct to the feminisation of poverty. That women retain the overwhelming responsibility for such services will be good neither for them nor for the society.


Because of such burnout issues (or to prevent their occurrence) many have argued for the more systematic introduction of outside support services for those who choose to live with their families, as well as for those who do not (Litvak, Zukas and Heumann 1987). Some people will need such help only at special times; early morning wake-up and late evening 'bedding down' may require lifting, washing, dressing and some special procedures, but after that individuals may be on their own. As DeJong notes (1977a, 1977b), with such general provision of services plus that for special occasions, people with a wide range of generally perceived 'serious' disabilities and neuromuscular conditions can live quite independent and full lives.


How independent and full a life such people can live may well depend on the way such services are delivered. Gerben DeJong and Teg Wenker (1983) address this issue when they contrast two very different models of in-home assistance: the agency-directed model of home health servics -sic- and the self-directed model of attendant services.


In their most traditional form, agency-directed home health services are intended to meet a person's episodic acute-care needs during post-hospital convalescence. The model has, however, been extended to the elderly client with a chronic condition. The service recipient is seen as a patient whose care requires a nurse's supervision in accord with a physician's plan of treatment. Thus, as in the medical model, accountability is assumed to attach to the physician. Payment is made to the home health agency which, in turn, pays its employees: nurses and nurses' aides. Home health services are viewed as an extension of the health care system, and accordingly, as a health care benefit.


In their most common form, self-directed attendant services are intended to meet a person's continuous chronic care needs. The service user is seen as a consumer who is capable of supervising his or her own care. Thus, as the Independent Living model, accountability is assumed to belong to the consumer, not the physician. Payment is made to the consumer who, in turn, pays his or her attendants. Attendant services are viewed as an extension of the social services system and thus as a social service or personal maintenance benefit.


Similar advantages of a self-directed model of service have been found for people with more substantive medical problems. Technology has made the home a friendlier environment for procedures previously thought possible only in the hospital under close medical supervision. Examples include improved sanitary and sterile conditions, electrical power for motors to run a variety of machines and fail-safe measures (back-up generators) when power fails, easy access to public and private transportation and to information and professional advice, and surveillance and telemonitoring systems to monitor patients' conditions and regimens (Dawson & Feinberg 1984). While these advances make more complex technical procedures possible, they can make the home seem more like a private hospital room and thereby defeat the very purpose of the shift.


Again the Independent Living model is an attempt to mitigate this danger. Thus people with end-stage renal disease who home dialysise have been shown not only do better in the long run but, in the face of such an unpredictable disease and technology, also feel more in control and better about themselves (Gerhardt and Brieskorn-Zinke 1986; Kutner and Brogan 1985; Simmons, Anderson, and Kamstra 1984).


For many reasons, an increasing shift to out-of-hospital care is a good, necessary, and even inevitable phenomenon. It must, however, be acknowledged that for some the shift will come too late. Some families will already be so depleted of energy and resources that they simply will not be ready to try again. For some the accompanying risk and responsibility will simply be too great, while for others, there will simply be no available family.


The shift of service to the home thus involves far more than a mere physical shift in the location of services. Families as well as individuals will have to be trained and supported in their efforts to cope with new responsibilities and risks. They will even have to learn that relying on others is neither a sign of failure nor an indication of helplessness. There will need to be many institutional and governmental supports, whether they be payments in kind, tax benefits, or even money where families provide services, as well as the creation of national comprehensive systems and policies about such services. Whatever form they take, however, they must be done to enhance the independence and control of the recipient.

In Conclusion

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