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Monday, 11 February 2013
Page: 615


Mr CRAIG KELLY (Hughes) (12:58): I rise to speak on the National Disability Insurance Scheme Bill 2012 and I do so as someone with a personal and vested interest. Sixteen years and 11 months ago my son, Trent, was born with Down syndrome. The day he was diagnosed was perhaps the hardest day in my life. Words cannot explain the grief parents suffer when they discover all the hopes and dreams that they have for their child are dashed, and their child is born with a disability for life. It leaves one with a great sense of guilt. It is the financial uncertainty, knowing that it is a lifelong condition for which there is no cure. I remember leaving the hospital and thinking of the inequities that a child who is born with a disability is often treated differently by our government and given different financial resources as if they acquired that disability through an injury or through a motor vehicle accident. Further, autism is another disability that affects up to one in 100 Australians.

But as well as having Down syndrome my son is also one of those one in 100 who suffer from autism. Like many parents whose children have been diagnosed with autism, it took a while for Trent to be correctly diagnosed. When he was about 18 months old we had concerns that he had problems with his hearing, because he was not responding to noises as you would expect of a normal child. So, for month after month we took him along to a hearing clinic, where they would put him in a darkened room and make noises with a puppet in one corner of the room, expecting him to turn, so that we would know his hearing was okay. But of course Trent would pay no attention, so the hearing specialists thought he had significant problems with his hearing.

We then went through months and months of trying to fit him with a hearing aid. The very minute we put a hearing aid into his ear he would pull it out. It was a game we would play for hours and hours on end, and he would always win. However, one day we were over at my mother-in-law's place and he was watching his favourite TV show, Blue's Clues, on the TV over in the corner of the room. The very minute he heard the sound he knew and recognised his little face turned to it. And I thought, 'You little bugger. You have been conning us all this time.' His hearing was okay, but he was autistic, which provided many of its own unique challenges.

With both autism and Down syndrome, Trent does not have any language and he cannot dress or toilet himself. He has repetitive habits and he will need care from my wife and me for his entire life. Now that he has reached the age of 16, it is time for him to start shaving. Every week I go through a procedure where we basically play jujitsu. I try to get the razor to his face and he tries to push it away time and time again. Now that he has got a bit used to it, shaving is down to about 40 minutes from the original hour and a half. That is something I will have to do with my son for the rest of his life.

But Trent certainly knows what he wants. He is a happy kid. He laughs as much as any kid. He is satisfied and comfortable in the world he lives in that we created for him. He certainly gets frustrated from time to time but he can often get past that frustration after about 30 minutes of hard work. He does not have to worry about what is happening on the next day, the next week or the next year. His world is uncluttered by the worries of responsibility, social acceptance and the subconscious fears that plague the rest of us.

But most of all, having a son like Trent has made me realise that every life is important; it is precious and it is valuable. However, caring for Trent is a lifetime task. There are simply no days off. And, of course, our greatest worry, something we try to put out of our minds, is what will happen to our son when we are too old to care for him or when we are gone.

There is also the financial concern. The Autism Society of America estimates that the lifelong cost of caring for a child with autism is between $3.5 and $5 million. But all the money in the world does not make dealing with autism or Down syndrome easier. Many parents I know who have children with severe disabilities are on medication for depression. Studies have shown that single mums looking after kids with autism have the same stress levels as soldiers in combat. Then of course there is the strain on the family. Divorce rates for parents caring for a disabled child are high, at almost twice the rate of the national average.

Although no amount of money will heal disabilities such as Down syndrome or autism, money and resources can improve the quality of life. It can provide greater opportunities and it can help take the stress off families. In my maiden speech in the House, I talked about the unsung group of heroes working across Australia today, whom we may well call our neglected people: our carers and children with disabilities. I noted that as a society we ask our carers to provide over one billion hours of unpaid work a year, which would cost us well over $30 billion if we taxpayers had to pick up the tab for it. Simply, as a society we are asking our carers to do more than their fair share of the heavy lifting. I also pledged that during my time in parliament I will be fighting to ensure that our carers and our children with special needs are provided with the resources they rightly deserve and need.

I for one am pleased that we are moving to improve the lot of people with disabilities and their carers. But let us not gild the lily. Let us not mislead the public and the carers of people with disabilities about what this bill actually does. The Productivity Commission's report called for these trials to be funded with $3.9 billion over the forward estimates. But this parliament has kicked in only $250 million a year over the four years for the trials. That is just 25 per cent of what the Productivity Commission called for. So, before the NDIS has even started, this parliament has short-changed Australia's disabled by 75 per cent of the funds necessary just for the trials. Yet, we seem to be able to find money for almost everything else. And we do not have a clue about how we are going to pay for the full NDIS roll-out, which is going to cost upwards of $8 billion a year.

So, if any member of this parliament claims that they have delivered a National Disability Insurance Scheme, when the truth is the trials are short-funded 75 per cent, they are simply hoodwinking the public, and they are involved in a cruel hoax on our nation's disabled and their carers. No-one can say they have delivered the NDIS until they have actually delivered the funding needed, and it is delivered on a sustainable basis. That is what the debate should be about.

There is not a split match between members on either side of the House when it comes to our desire to deliver an NDIS and to deliver better services for our carers and kids with disabilities. However, I have great concerns that the government is playing politics with the NDIS. We have had the community service minister shrieking across the chamber here, 'We own the NDIS!' No-one owns the NDIS, and when it is finally delivered—which may be in seven years time—it will be owned by the people of Australia. What the public wants to see is this issue tackled in bipartisan spirit with every member of the House working together to deliver an NDIS. We know, according to the Productivity Commission's report, that to deliver this in full could take seven years—spanning the lives of three parliaments. To do that over three parliaments we need stability. We need to have a bipartisan approach through those next three parliaments over those next seven years.

To address that issue and that problem, my good friend the member for Dawson, someone who understands disabilities from his own life experiences, thoughtfully put together a motion to establish a joint select committee on the National Disability Insurance Scheme. This would have overseen the implementation of the NDIS; it would have been subject to terms of reference and agreed upon by both the Prime Minister and the opposition leader and ratified by the entire House; it would have comprised four government members and senators, four opposition members and senators, one Greens member and one member of the non-aligned group—either a senator or a member of the House of Reps; it would have been jointly chaired by a government member and an opposition member; and, most importantly, this committee would have remained in existence until the full implementation of the NDIS is achieved. If members of this current parliament were truly concerned about the welfare and opportunities of our disabled, rather than playing politics, they should have supported that motion. Instead, it was completely rejected. Such conduct raises further concerns about whether this government is really truly concerned about a better deal for our disabled, or whether it is just here to play politics with the most vulnerable members of our society. I call on the government to rethink its negativity, to rethink its opposition to this bipartisan approach and to create an opportunity where both sides can go ahead on a bipartisan approach.

Going forward, to deliver the NDIS over three parliaments in seven years, there are a few very important things that we need to get right. Firstly, we need to be very careful that any funding we put forward goes to provide resources to those who need them the most, is not captured by the bureaucracies and is not wasted on needless administration. Most importantly, we need to work out how we are going to fund the NDIS on a long-term, sustainable basis—for we could have all the good will in the world, we could tour the countryside talking up the NDIS, we could print glossy brochures to stick up in our windows and hand out around our electorates, we could take the applause from disabled groups and we could design the most effective and the most efficient scheme to provide those services, but unless we show how the NDIS will be paid for on a sustainable basis the NDIS will remain nothing but a mirage.

As I said, the funding must be on a sustainable basis. It cannot be funded by deficit spending. This is the reason why there are only two ways that we can fund the NDIS. The first is that we must cut the waste. We must eliminate every indulgent and feel-good scheme. Perhaps we should set up a museum of government waste here and put in all the long lists of wasteful schemes we have seen from this government, so that every single parliamentarian walks past them every day and does not repeat those mistakes. We must end the palpable waste that I have seen in this place, which has made me sick to the stomach since I have been here. We need to develop a culture of thrift across the bureaucracies—and, when one reads in today's papers that senior Climate Change Authority executives have been dining out at posh Italian restaurants and leaving the taxpayers to pick up an almost $2,000 bill, we need to take to this culture of indulgence with a meat axe. Most importantly, if we deliver the NDIS, we are only going to achieve this by making sure that our economy is running on all cylinders and by lifting our productivity. We cannot do this by introducing new taxes and red tape that raise the cost of doing business in Australia and make Australian industry uncompetitive, for ultimately the only way we can deliver the NDIS is for it to become a social dividend from a productive economy running on full steam.

Look at some of the policies that this government has promoted which jeopardise our ability. On the government's own figures, the carbon tax will reduce Australia's GDP by a cumulative total of $1 trillion by 2050—$1 trillion reduction in GDP! That is the greatest threat we have to delivering the NDIS. We need policies to deliver this NDIS: we need policies that foster individual economic opportunity; we need policies that promote free markets and protect them with effective competition laws; and we need policies where we can see the economy grow, for that is the only way that we can deliver the NDIS and provide it on a sustainable basis.