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Tuesday, 15 August 2000
Page: 19032

Mr BAIRD (10:35 PM) —I rise tonight to commend the work done by carers of severely disabled family members in my electorate and elsewhere in the country. I call on the New South Wales state government to reassess how it plans to match the Commonwealth's efforts in this policy area.

New parents have a mental picture of raising their children and seeing them leave home to begin their own families. But this is not the life plan for families dealing with a member's profound mental illness. Being the parent of a child with a severe intellectual disability is like having a baby forever. Parents and primary carers of children with mental disabilities bear this burden with impressive strength and remarkable commitment.

Carers such as Lorraine Atkins and Sue Long in my electorate of Cook both have intellectually disabled sons who are nearly 18 years of age. Lorraine and Sue came to visit me in my office recently to draw attention to the shortage of respite places for disabled people who are over 18 but whose carers are under 65. Until recently, both boys were spending time in a respite care centre in my electorate. However, this centre is temporarily unavailable to them because it is fully occupied in housing a child with severe autism. Coincidentally, I had earlier met with the mother of that same autistic child, who impressed on me how poorly the state government is handling the issue of respite care.

To someone with limited knowledge of autism, a child suffering the condition seems simply undisciplined and badly behaved. It is the child's frustration with their communication difficulty that leads them to lash out by screaming or hitting out at those around them. Autistic children need constant care and supervision. Parents cannot take an autistic child to a restaurant because their behaviour is socially unacceptable and so poorly understood. Many members will recall the A Current Affair report which was aired on 1 August this year and which portrayed the family life of the Goswell family. That family does not live in my electorate, but their experience mirrors the burdens that are borne by 30,000 other families affected by autism nationwide.

Autistic children are usually unlike the savant character portrayed by Dustin Hoffman in the film Rain Man. Most have extreme behavioural problems. Considering the stressful, distressing and frequently physically exhausting nature of their work, carers could do with more time off. This is necessary just for them to recuperate and energise so that they can continue their work as carers more effectively for a much longer period. It took the interest shown by A Current Affair for the New South Wales state Department of Community Services to finally act by granting the Goswell family the assistance they had for so long been evaluated as needing—one week's respite per month.

Assistance for carers is a responsibility of the state and territory governments under the Commonwealth-State Disability Agreement and the Home and Community Care program. In an April 1999 meeting between Minister Newman and her state counterparts it was agreed that the Commonwealth would inject $150 million, over the final two years of the agreement, into meeting the needs of carers. As one part of the National Respite for Carers program, the Commonwealth has taken on responsibility for a network of carer resource centres and carer respite centres throughout Australia. I stress that this is designed to complement the existing state funded services in operation. The Commonwealth network is the vehicle for dispensing the Commonwealth's funding for aged carers. This should not be taken by the states as a sign that they can shirk the responsibility for the maintenance of respite care, a responsibility which is primarily theirs. The role of the Commonwealth funded care respite centres includes the administration of short-term or emergency respite assistance for carers, and the coordination of other community services that may be of assistance in addressing their longer term needs.

To improve carer respite and information services, the Commonwealth government has expanded the National Respite for Carers program. Over the last four years, direct funding by the government for community based respite care in this program has grown from $19 million in 1996-97 to an estimated $58 million this year. That funding has allowed the very welcome 1997 Social Security Legislation Amendment (Parenting and Other Measures) Act, which increased the number of days of leave that carers can now access from 42 to 63 days without having their payments reduced or terminated.

Of course, carers like Lorraine and Sue in my electorate sacrifice a great deal for their children because of their pure love; and they do it in a selfless manner. It is a tragic situation that many parents have to face. It is a situation which the Commonwealth government is facing in terms of funding. It is one in which the state government has not risen to the challenges in the appropriate way, despite the offer of shared funding and matching funding from the Commonwealth, and it is about time that we saw genuine compassion and genuine concern from the state government to address this most important issue. (Time expired)