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

I am not quite sure how far we are going to take this multi-partisanship. I had the same quote as Senator Moore marked to use! I would also very much like to thank the members of the Senate community affairs committee and the secretariat, who, as the previous speakers have mentioned, worked under extremely difficult circumstances with some changes of personnel going on at crucial times. I would like to thank them all for bringing this report to fruition.

The report has 15 recommendations. It was deliberately designed to complement the current work being done by the Productivity Commission on the National Disability Insurance Scheme. We very deliberately chose to have the word 'lifelong' in our title—that is, Disability and ageing: lifelong planning for a better future. The National Disability Insurance Scheme report looks at the current situation and the need for funding—it talks about a system that is not even a system; so underfunded and inequitable and broken is the current disability support 'system' that it does not even function as a system. The Productivity Commission's report was not looking at the exact question that so many parents and other carers lie awake at night wondering about—that is, what happens when I can no longer care?

This is a relatively new question in developed countries because up until not all that many years ago people with intellectual disabilities and people with physical disabilities were not likely to outlive their parents. The average life expectancy for a person with Down syndrome in Australia in the 1950s was 27. People no longer live in institutions; they live in the community. They have better nutrition as a result and a better sense of their own worth. They also benefit from the huge advances in medical technologies that have been made, which assist people in every area of their lives, including the pain management that some people with physical disabilities need to undertake regularly. So the life expectancy for people with disabilities has expanded past the span of their parents' lives.

Not only do we need to think about the fact that their parents are going to die—it is always a difficult term to use, but their parents are going to die—but also in many cases parents are going to get to the stage where they can no longer provide the level of care needed. They are just not physically strong enough any longer to assist their adult child with their needs. We are supposed to have a system that would offer respite and offer specialist support to assist families in those situations. It does not happen. Or, if it does happen, it happens in an ad hoc way that cannot be relied on and never quite meets the needs of the people who are doing the huge amount of caring that needs to happen.

Lifelong planning is the focus of this report—not service planning. I would like to quote from a Queensland organisation called Pave the Way. It goes on to make the distinction that parents of people with disabilities are used to planning from the time their children are babies, but that is primarily service planning. It is about trying to get your child to the right speech therapist or to the right podiatrist or into the right education program or into the right work system. It is about planning for the near term, the short term; it is not planning for what happens when you are no longer there. As both Senators Moore and Siewert have mentioned, there are many barriers to planning. Some of the barriers to planning are simply that people do not have the time. It takes quite a long time to sit down and plan what a good life will look like and who will support it when the carer cannot do so any longer. It is not only the issue of individual families finding time to do it, it is also getting the space to do it. You need respite care, probably, to undertake the planning.

In many cases families with children with disabilities—and this came out again in this inquiry—are quite socially isolated. Because of their need to care, their friendship groups have diminished more and more. So knowing people that you can even ask to become involved in helping to support your son or daughter becomes problematic. And then of course there is the question: what is the point of planning if there is nothing at the end to underpin that plan?

One of our recommendations here—which supplements the one about one-stop shops—is to have a look at improving the accessibility of information on government websites and updating the FaHCSIA website so that its information is up to date, comprehensive and navigable. I know that many parents regard up-to-date lists of services as cruel jokes in themselves, because you can get this great list of services but, when you go to use those services, they are booked out for years to come, or you do not meet the criteria, or they are a pilot program and they do not know if their funding will be going into the next month, and so it goes on. There are so many areas where that is not available.

I hope we have pointed out here that lifelong planning involves not just where you live or what you do or how much service support you have; it is also about who cares about the quality of that support and who cares about whether you are being abused or exploited in those situations. One of the examples that I found quite profound was from a group called Scope, a disability services provider in Victoria. They were talking about why people might have lost faith in the ability of the government system to provide accommodation. They said:

In the emergency housing area, if a crisis happens the person with the disability ends up going into respite care facility. Last year in the north-western metropolitan region 50 per cent of our respite places were blocked up—it sounds awful saying 'blocked up'—and were unable to be used because of crises that had happened in ageing carers' homes and the person with the disability had to take the place for a year or two years. That meant all the other people that wanted to use respite were not able to use it because 50 per cent of our places were taken up with crises.

I think that might give you a sense of why parents would be less than confident that the system is going to support them or that the services that they might find on a website are actually going to be available when they need them. We referred again to the culture of crisis which the Productivity Commission report brought out so firmly.

We have, as I said, made 15 recommend­ations. Some of the more important ones were around the difficulty that people have navigating between disability employment, disability retirement and premature ageing in the area of disability. This needs to be considered, perhaps in the same way that Aboriginal and Torres Strait Islander ageing is looked at. Another recommendation is that the government establish with the states and territories a succession planning framework that organisations can use to develop—and assist families to develop—lifelong plans. Our 15th recommendation is that recurrent funding be made available in the next budget to assist community run organisations and individual families to pursue disability planning. I very much hope that this will be pursued and I very much recommend the report to the Senate.