Paul Neville (Hinkler, National Party) Share this | Hansard source

I rise to speak on the National Disability Insurance Scheme Bill 2012. This bill establishes the framework for the National Disability Insurance Scheme Launch Transition Agency. As the federal member for Hinkler, which has not only one of the highest percentages of senior citizens in this country but also one of the highest concentrations of people with disabilities, above the national average, this bill has vast implications for my electorate.

There is no doubt that there is bipartisan support for the National Disability Insurance Scheme. There is, however, plenty of scope for further amendments given that neither the NDIS's rules nor the operating guidelines has been released. The NDIS, as a person-centred and self-directed funding model, is akin to a voucher. As such, it has philosophically aligned the objectives of empowering the individual, removing government from people's lives and reducing red tape. It would be a tragedy to see the NDIS weighed down with the bureaucracy and paperwork that has hampered aged-care for more than a decade. The coalition envisages the establishment of a joint parliamentary committee to be chaired by both sides of politics to oversee the establishment and implementation of the NDIS. My colleague and the federal member for Dawson, George Christensen, has had a motion in the House for some time to establish this committee. Unfortunately, it has not been brought forward to a vote.

In the lead-up to where we are today, the report of the disability care and support inquiry, released in August 2011, made several key points, including that most families and individuals cannot adequately prepare for the financial impact of a significant disability and that that the current disability support scheme is underfunded, unfair, fragmented and inefficient and gives people with disability little choice and no certainty of access to appropriate support. The inquiry recommended that there be a new national scheme—the National Disability Insurance Scheme, the NDIS—that provides insurance cover for all Australians in the event of significant disability.

The inquiry also found that funding of the scheme should be a core function of government. The commission proposes several options for providing certainty for future funding. Its preferred option is that the Australian government should finance the entire cost of the NDIS by directing payments from consolidated revenue into a national disability insurance premium fund, using an agreed formula entrenched in legislation. However, sadly the funding of the NDIS has become a political football and, in my opinion, that is very disappointing.

Some years ago I was invited by Channel 10 to a day out for disabled kids. I turned up as the dutiful member, but when I got there I was absolutely staggered. I had never seen so many kids in wheelchairs, on crutches, in walking frames, even in little beds that were wheeled along; they were coming for this day out that had been put on by Channel 10. There were literally hundreds—and that was just in my home town of Bundaberg. It left me with a profound sense that a lot of disabled people are never seen. They live in houses and it is just once in a while, at a function like that, when we see the extent of how much disability is around us.

In my electorate of Hinkler, there are many passionate people who advocate for those with disabilities. Perhaps one of the most dedicated is Mary Walsh. As the mother of an intellectually disabled son who passed away six years ago at the age of 40, Mary knows about having to fight for every single service her son received during the course of his life. Mary's son had Williams syndrome, a rare disorder in which premature ageing is a clinical feature, but the system would not recognise it. Though clinically prematurely aged at 35, he would have to live a further 30 years to obtain federal assistance with day-to-day care. Premature ageing is aggravated by the fact that many of our people are now living longer and no provision has been made within the current system to accommodate this.

As an advocate for people with disabilities, Mary wrote a submission to the Productivity Commission and to the Productivity Commission's draft report. It is her firm belief, and one which I support, that the Productivity Commission's recommendations need to be adopted and that the federal government, which is responsible for the implementation of the NDIS, should do so. As Mary put it:

The solution is in the government's hands. It the government's responsibility to remove feelings of desperation, desolation and desertion so that many families and carers who experience this can have a better lifestyle. It is time that the government ends the nightmare process, which so many families endure, processes which result in families having to give up their children because they can no longer care for them—

that really frightens me, that people have to give up their kids because they cannot care for them—

and others who are doomed to endless family struggle for the basics of a reasonable lifestyle.

Another submission of which I took particular note was from the group Every Australian Counts, a group which holds events in my electorate every year and last year held a successful DisabiliTEA, which I attended. In its submission, Every Australian Counts said:

It is hard to believe that in a democratic country as wealthy as Australia that people with a disability and their families are still left to struggle alone every day. Most Australians assume that if people are born with a disability or acquire one later in life, that some system, somewhere, will take care of them.

But we all know it does not happen. As the father of a partially disabled son and the grandfather of a disabled granddaughter, my interest in this is not merely academic. My family and I have lived with these problems with my son, and now I am encountering similar problems with my granddaughter, but in a different field. She suffers from a disease called tuberous sclerosis. I am more lucky than most: while I have never been rich, I have always had reasonable salaries and I have been able to cope with these conditions, get my kids to good doctors and help my granddaughter. My son and my daughter-in-law have been absolutely marvellous with the care of my granddaughter. She has every possible opportunity to overcome her condition, but a lot of people do not.

In Australia disability support is a lottery. People receive different levels of support depending on how, when and where their disability was acquired. People count themselves lucky—note the word 'lucky'—when their disability is the result of a car accident in the right state—note the word 'right'—where they are entitled to support. In the wrong state—note the word 'wrong'—they are entitled to nothing, no matter how much their disability expenses skyrocket. There is no entitlement to support if you acquire your disability at home. There is no private insurance to cover the costs incurred of a baby being born with a severe disability. No matter how severe the level of disability, people with a disability, their families and their carers struggle daily to support and service what are sometimes even basic needs. The current system fails to deliver essential services, leaving exhausted, impoverished families to fill a huge gap, sometimes as long as 50 years.

I know of one family's situation in Western Australia. I will not use their surname, because I do not have their permission. But Samantha is a very focused wife. Samantha has two boys, and one of them, Reuben, nine years of age, has an undiagnosed condition and also suffers from dyspraxia, where he cannot speak. He can hear but not speak. On top of that, as if that were not enough—and that would be a challenge for any family—her husband is a quadriplegic. Just imagine the twin problems of a disabled child and a disabled husband in one family. When Samantha goes out to earn some money—what for?—to put her son through additional speech therapy, she is pulled up by Centrelink because has exceeded the allowable amount of income, which affects her pension. We should be doing these things a lot better. The Samanthas of the world are out there doing a job that governments should be doing. Their husbands and their kids are entitled to a fair go, and I hope this system delivers it.

I also want to make a plea for younger people with disabilities who require institutional care. What we do today is try to get them into hospitals. Sometimes a country hospital will take them; sometimes they end up in a nursing home. I can remember one fellow I used to go to see regularly at Christmas time in a nursing home. I can still see him in his white shorts. He had no movement at all other than having a little scratching device he could scratch his back with. He loved to talk about the races and various things like that, but he had no young people of his own age around him. Part of the package for disabilities should be to get those young people and younger middle-aged people out of nursing homes and into some form of group home. Of course, these would be have to be staggered in the amount of care given, because there are different levels of disability, but they should be a place where people could live out their lives with other younger and middle-aged people with similar worries and cares—somewhere where that would have some form of interaction and lifestyle and not have to endlessly live in a room with older people being their only company. That would be one thing I would recommend to both sides as we start to put flesh on the bones of the NDIS.

I would volunteer my electorate of Hinkler, in particular Bundaberg, because many years ago, in the sixties, we built one of the first Bright Horizon schools for disabled children. We built it over two weekends; it was a remarkable feat. We also have a farm and a packaging works, where Bright Horizon also engage younger people in packaging fruit and vegetables and the like, and growing them; and also making trophies for sporting clubs. Yet a third group work where the council sort the rubbish for environmental purposes. Bundaberg also has a number of these group homes that are aimed essentially at young people with reasonable abilities to get around themselves, not those who are bed-bound. So I think Bundaberg has the foundations of where you could trial some of these models for younger and middle-aged people with disabilities.

I think the current system fails to deliver essential services, leaving exhausted and impoverished families to fill a huge gap, as I said before, for as long as 50 years. It is the great fear of ageing parents that there will be no-one or no system to look after their kids. The NDIS represents a fundamental reform to the way services are funded and delivered. It is a social reform on a scale of Medicare and compulsory superannuation, and we should give it every support and make sure, as I said before, that it works efficiently and does not become a victim to excessive bureaucracy.

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