Page 3714 - Week 12 - Thursday, 21 October 1993
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which starts preparing their children for life in a wheelchair from the age of two or three. Some parents want the opportunity to work intensively with their children in the crucial early years, where innovative intervention programs offer the greatest benefit. I am sure that all parents want to give their children the chance to learn how to overcome their disabilities to the maximum extent possible.
Unfortunately, the current service approach seems to be based more on budgetary constraints than on a properly researched plan. No proper analysis of service requirements appears to have taken place. Certainly, little consideration has been given to the requests of parents. According to ACT Health reports, the Government is not even aware of how many children are currently being treated in the various programs or what the service requirements will be for the future. Anecdotal evidence suggests that with improved medical technology more very premature babies will survive, greatly increasing the number of disabled children in our system. If the responsible authority is not aware of even something as basic as how many children use the system, how can we expect enough research, determination of need and service requirements or planning to have been done?
I am not suggesting for a moment that the solution lies in throwing money at the program, but a sound background upon which decisions can be made to improve the current service is essential. We must have efficient, properly directed services which are needs based. We need to know what services are required, what services are provided, both here and in other States, where the gaps are, and how the gaps can be filled. We need to know what the parents think. We also need to know upon what philosophical premise, if any, the current systems are being provided. Are we concentrating on a medical model, or should it be an educative model, or should we be looking at something innovative somewhere in between?
I believe that the proper channel for an inquiry is via the Social Policy Committee. It is important that an external, independent body be involved, so that the entrenched views of many in this system do not colour the approach or the outcome. Regardless of what the EIS may assert about high levels of customer satisfaction, supposedly gleaned from their own internal surveys, the fact is that the multidisciplinary, therapy based early intervention service does not meet the needs of many parents and many of their disabled children. Many parents, almost always those with children who suffer from the more severe disabilities, do not find the essentially fragmented, service based approach satisfactory. Many want an intensive, integrated, highly structured, holistic, educationally based approach. This is one of the major reasons why parents throughout the Western world have walked away from the often free, government funded, service based approaches and made major sacrifices - personal, financial and emotional - to establish other programs.
A visit to the Conductive Education Centre in Kambah would show everybody what can be achieved in some cases. As the Sydney physiotherapist Mary Robinson, who spent many weeks at the Petro Institute in 1988, said upon her return to Australia:
Conductive education deliberately aims to teach attitudes: of application, persistence, patience, cooperation, tolerance, a readiness to learn, to achieve ... to "do".
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