Sue Boyce (Queensland, Liberal Party) Share this | Hansard source

I would also like to speak tonight on the Social Security Legislation Amendment (Improved Support for Carers) Bill 2009 and related bill. Firstly, I would like to recognise the many organisations and individuals who made submissions not just to the Who Cares ...? inquiry conducted by the House of Representatives but also to the inquiry of our Senate Standing Committee on Community Affairs. I am not sure that we appreciate or fully acknowledge the effort that is required by carers to come to a Senate committee hearing. If you are a carer under this legislation, you require someone else to do the looking after so that you can come along. Even writing a submission to the inquiry was difficult both in the time involved—just finding those spaces of time in which to write it—and emotionally for people to talk about their problems. As a number of other speakers have mentioned, carer support is an area of policy that touches thousands—millions—of families across Australia. These bills, which I am pleased to say are about ‘improved support’, are part of a continuum of changes since the 1970s and most recently in the late 1990s trying to improve the situation for people in Australia caring for people with disabilities.

Currently, to receive carer payment for a child the child needs to be found to be profoundly disabled. Whether you get access to support is based on that finding. I noted that the Parliamentary Secretary for Disabilities and Children’s Services, Mr Shorten, in the House of Representatives, commented that the current tests were too restrictive and inflexible. I would agree with that. One of the first meetings I attended after I joined the Senate, in May 2007, involved other senators and officials from Centrelink and FaHCSIA talking about the Adult Disability Assessment Tool and the Child Disability Assessment Tool. These changes in the assessment tools—and the changes in thinking that have come behind them—have probably been four to five years in the making. Aligning the carer payment with the type of care rather than using the strict medical definition of a disability is a major step forward and one that has been worked on and developed over at least the past four years. I do not think this is an issue where either party should claim superiority. It has been a gradually evolving area of thinking and assessment. I think it is an area that has an awfully long way yet to go.

The old disability assessment tools were based very much on the medical model—that is, if you had a disability, you were sick. We could look carefully and find this sickness, measure this sickness and therefore decide whether you were worthy of receiving help. Some of the problems with the old disability assessment tools included things like asking whether a child was able to feed itself. If you ticked that box, you would obviously come down the scale a bit. It did not ask you where the child would get the food to eat from. Obviously, a child feeding itself is one thing, but a child preparing a meal—sourcing food for itself—is something entirely different. That element of the care was not there. On the same basis, it might have asked you if a child could do up three buttons on a jacket. It did not ask whether the child was able to find a jacket by itself or whether the child would know by itself that it was hot or cold. In the old tool there was certainly a recognition of physical inability but not of developmental delay, intellectual disability or any of the many other aspects of disability.

As I said, we have moved forward, but we still have a long way to go. I note that we have at least extended the definition of a treating health professional. The previous system considered a treating health professional to be a doctor. When we thought that all disability was an illness, it was assumed that the parent of a child with a disability would be very closely in touch with their treating doctor and that their treating doctor would know them and their child very well. This, of course, was not the case with all disabilities. Certainly there are many well children who have disabilities. So people were forced to go to the local doctor to get the right boxes ticked on the assessment tool and often had to fill it in themselves and then ask the doctor to sign it because the doctor did not have a clue about the abilities or capabilities of the child being assessed.

I think probably one area where we have not yet grappled with the changes that need to be made is this sense of ambit claim that parents and other carers are forced into by filling in these forms. I think most people in the disability community would make a real effort to put their child’s abilities ahead of their child’s disabilities. But if you are going to pass this test you must set out to make your child out to be as bad as possible; you are setting out to fail as well as you possibly can so that you can become eligible for the funding. I am not sure how we address that issue, but I certainly think it is one we need to recognise in the sense that we are asking people to talk down their loved ones when they fill in these forms and not talk them up, which is what they very much try to do in the rest of their lives. I think that is something that we would welcome not just in the area of disability but across the board.

There are probably several other areas that we need to look at carefully here. We have talked about how in the past the medical model of disability was that it was sickness, but I think we also need to keep in mind that there is obviously a tension between the needs of people with disabilities and the needs of their carers. Their needs are obviously inextricably linked but they are not always the same. There is the potential for a conflict of interest between the needs of carers and the needs of people with disabilities. We must remember this and recognise it, whether we are talking about children or adults.

I saw an interview recently with a much loved Australian actor, the late Bud Tingwell, talking about the fact that he took, I think, 10 years out of his career to care for his wife and was a little surprised when one day someone, no doubt from a disability services background, referred to him as a carer. He said, ‘I did not think of myself as a carer. I was a husband doing what a husband should do for my much loved wife of more than 40 years.’ I think that is how all carers would like to see themselves, whether they be parents, foster parents or siblings—and the list goes on. But they have been forced into a position of having to become advocates not just for their children but for themselves by the way our society has quite happily used their free labour since the end of institutions without compensating them for—or even recognising, in many cases—what they have done. But I do not think that we should on that basis see the very genuine, very necessary and now very well-developed advocacy skills that carers have developed as competition to or as overshadowing the needs of people with disability, who in many cases do not have the same advocacy ability as carers.

I would like to think that we can continue down this track until we get to the stage where there is a genuine choice for parents and others who care for children with a disability. I noticed that Senator Siewert—and I certainly support her view—spoke about the fact that we now have for the first time a recognition that children with disabilities are just like other children. Some of them live in split, shared care between parents and some of them live at home with both their parents. Some of them live in all sorts of situations that, to them, represent family. So we need to continue the recognition of shared care. I find it somewhat bizarre to suggest that it would not be possible to change the rules around parenting payments so that they too could be split on the same basis that has made child support now a far more flexible payment and far more based on who does the caring. This would not seem to be a particularly difficult thing to do.

Of course, the assumption is still that having a child with a severe disability will mean that a parent cannot work. In my view, if we are going to do this properly, we need to get to the situation where parents have the same choices as anybody else irrespective of whether their child has a disability or not. I want to get the situation of saying that having a parent who wants to work and cannot because they have a child with a disability is a failure of our system and not a necessary requirement that we are putting onto them because we do not have sufficient paid support services to allow them to undertake work in the same way as other people can.

This, I think, is where we need to be heading. I think we are on the way. I am hoping that we can continue down this track far more vigorously than we are currently. Just as an example of how far we still have to go, I would like to share with you, finally, an email which I received today from a disability group talking about a consultation paper on women’s health being developed by the federal Department of Health and Ageing. This discussion paper was launched on March 12, but this organisation writes that they have now been given an extension for their response to the discussion paper until July 31. I will quote part of the email. It says:

... as the Department was unable to provide an accessible version of the Discussion paper (until today).

We are talking about just over three months that it has taken a federal government department to produce a paper that is accessible to people with disabilities so that they can comment on an issue that is of extreme relevance to people with disabilities. We are on the way but we are not there yet; and I would like to support the legislation.