Mrs STONE(1.19 p.m.) —I move:

That the House:

(1)   expresses concern that the increasing numbers of ageing parents who are sole carers of adult children with disabilities, including physical, intellectual, psychiatric and sensory disabilities, and those with acquired brain injury should have better access to respite and permanent residential or in-house care services for their dependants;

(2)   calls upon the negotiators who will meet at the time of the midyear review of the three-year Commonwealth-State Disability Agreement to give particular attention to the level of service now provided to those persons and to their needs; and

(3)   calls upon the governments involved to urgently implement an appropriate action plan following these negotiations.

Soon after I became the member for Murray, a number of elderly people began to present themselves to my office. I presumed that they were bringing to me their concerns about their own futures as elderly, frail people with limited incomes, mostly dependent on some social security payment. Rather, their concerns were wrapped around the fact that they were carers of disabled adult sons and daughters and, in some cases, grandchildren.

As their own lives advanced, they were becoming less able to keep up the very difficult job of 24-hour care for the disabled members of their family. They were becoming increasingly concerned that there were not the services available in the community to support them, to give them ease of mind that, if they should pass away, their sons and daughters would have some accommodation with the level of support that they had been able to give as parents. They were concerned that they would not be able to find respite care. As you can imagine, if you are in your seventies or eighties, giving 24-hour care gets too much from time to time and you need to have time away, perhaps to meet with other members of the family.

Too often, in my own electorate, the only place to put these adult sons and daughters with intellectual and/or physical handicaps is in acute beds in hospitals so that their carers can have some time out. That is obviously not what acute beds are intended for and it is not a cost-effective way to go about giving respite care, but it is the only option for too many people who find themselves in this very difficult situation.

If you have a wheelchair you obviously need special transportation. If you are living in the country often the payments available now are not sufficient to get your son or daughter to therapy sessions or to meet with others. These people are often aware that there are services somewhere else, but they cannot access them because of transport costs or the difficulty of transport.

Very often ageing parents have limited knowledge of what is available or they are confused by the complexities of the state or Commonwealth programs offered. For example, if you are born disabled and are registered soon after birth with that particular disability, a range of services and facilities flow in your direction. If you become disabled later in life—for example, you acquire a brain injury—a different set of circumstances go into motion. It is more difficult to access those same services if you acquired the injury later in life.

It is not just my Murray electorate that has 40 or more people in their seventies and eighties taking care of substantially disabled sons and daughters. And can I mention a grandparent who is looking after his teenage daughter with muscular dystrophy. He himself is in his eighties. His wife died recently. You can imagine the extraordinary anxiety he now feels for the welfare of his granddaughter.

In fact, the most recent Australian Bureau of Census and Statistics figures tell us that there are more than 7,500 carers in this category. We can expect over time that substantially more people will enter this type of family care. We know that more people survive brain injury as adults and more people born with disabilities survive to live long lives and, we hope, lives which are meaningful for them.

At the same time, families are often smaller than they were before. Family networks are less prevalent in our society. Families are more mobile. Too many of our families are broken up with husbands and wives going in different directions. So, in the future, we cannot imagine that we will be able to depend on this pool of caring parents who will pick up the burdens of a disabled son or daughter and carry that burden for perhaps 30, 40 or more years of the life of their sons and daughters.

I am not saying that the previous government ignored this problem. In 1991 the Commonwealth and state disability agreement looked very carefully at how the responsibilities and tasks of caring for the disabled should be divided between the states and Commonwealth. That three-year agreement is to be renegotiated this year.

In the early assessment of how that agreement delivered services to this disabled area, we have to be substantially concerned. What has been found in this early assessment—and what my older parents are saying to me—is that the agreement has, very largely, failed to deliver its objectives.

We have cases where there is incredible bureaucracy, inflexibility of program delivery and problems in defining or attempting to define categories of disability, which make it a nightmare to try to work your way through if you have a son or daughter with a multiple set of disabilities. Too often if you have shared Commonwealth and state funding there is a tendency for one or the other to try to move the disabled into another category where the funds will not be drawn from your particular area.

As COAG moves into the scene, there has also been an endeavour to try to deliver the services within a market model. We must always ensure that economic efficiencies are achieved within a most humane set of understandings about the needs of the disabled. But there is a real fear—certainly in the last three years—that the disabled and their carers have not been served well by the CSDA.

In bringing this matter before the House, I ask that we call on the negotiators, who will meet at the time of the mid-year review of the three-year Commonwealth-state disability agreement, to give very particular attention to the level of service now provided to the disabled and to their needs and to their carers. I call upon the governments involved to very urgently implement an appropriate action plan following these negotiations. There are too many disabled individuals who are not receiving the attention our society should be giving them and their carers.

Mr DEPUTY SPEAKER (Mr Nehl) —Is the motion seconded?

Mrs Gash —I second the motion and reserve my right to speak.