Warren Entsch (Leichhardt, Liberal Party) Share this | Hansard source

In rising to speak on the National Disability Insurance Scheme Bill 2012, I am by no means the first, and I certainly won't be the last, to stand in this chamber and say that the current system of support for people with a disability is definitely broken. We have a system where, if you have a disability, the level of support you get is dependent on a whole range of factors, many of them entirely out of your control—from the state you live in to whether the disability is inherited or acquired. If it was acquired, when did it happen? Where? How? Are you covered by workplace compensation or motor vehicle accident insurance? Or will you be subjected to long waiting lists and queues? This lack of support when it is really needed is resulting every day in heartbreaking situations where people with a disability are not living, just existing—and the situation for their families and caregivers is often not much better.

We need a new system of support, a system that puts the individual and their needs at the centre—in charge and able to pick the supports, aids, equipment and service providers of their choice. This is the vision of the National Disability Insurance Scheme. The technical nitty-gritty is that this bill establishes the framework for the NDIS and the NDIS Launch Transition Agency. This will enable the scheme to be launched and the agency to operate the launch in five sites across Australia from July 2013. But the detail does not communicate just what the real impact of this bill will be, if it is done right. Here, today, I would like to put some human faces to this debate. People in my electorate have not been shy in coming forward to tell me how this bill will make a real and lasting difference, and I want to share these stories.

The first is Mrs Colleen Dolan, who is 77 years old and has just been awarded an Order of Australia Medal. She has spent 40 years working on behalf of Far North Queensland's disabled community. It all started when Mrs Dolan tried to enrol her daughter Lynette at a local kindergarten but they would not accept her because she had Down syndrome. The principal said the staff were not qualified and she 'had to think of the prestige of the kindergarten'. 'That was the attitude in those days', says Mrs Dolan: 'unfortunately, there was very little available for people with disabilities and they were herded, segregated and not involved in the community at all.'

Mrs Dolan did not take that lying down: she started her own kindergarten and eventually closed the other one down. She kept fighting too, helping establish two key disability groups: the Cairns Regional Family Network and the Leisure Connections Association. Her daughter Lynette has benefited hugely from this targeted support—she lives in her own unit, does her own housework, can decide what she wants for lunch and gets support for budgeting and shopping. Mrs Dolan believes the NDIS has wonderful potential but wants to make sure that the funding does not get tied up in bureaucracy, that it gets to the people it needs to on the ground. She is also worried about how people will be assessed—will they get the support they need to be able to live an ordinary life, as in Lynette's situation, or will they only get what they need to exist? Mrs Dolan says it does take time—many years—but the government should look at the money they spend in disability as an investment. Individualised funding may cost more in the short term but people can achieve a level of independence and quality of life. The alternative is that they spend 50 to 60 years in a totally dependent state. There is no argument which is better, socially and financially, for society.

Another example is Kylie Allen, a young mum aged 33 from Cairns, who wrote to me late last year. She wrote:

I have 3 children (4 yrs, 2 yrs & 9 months), two with Special Needs. My daughter has an extremely rare chromosome condition known as 6p Deletion. There are only 30 documented people worldwide and because it is so rare, it is not recognised by the Government and we have to pay for her therapy, Doctors and specialists.

My eldest son has Autism and whilst he has the Helping Children with Autism Funding, there are three panel providers in Cairns and so we still are forced to pay for therapy ourselves.

The NDIS means that the financial strain will be lifted on our family and—more importantly—that my children can receive the health care and support they need, and to lead a happy quality life—just like their non-affected peers.

Vernon Lewis is a 62-year-old from Earlville, a real character. He wrote:

I was diagnosed with MS in 1989 and the complaint is advancing slowly all the time. I seek to continue to make a difference in my community in spite of, or perhaps because of that.

My involvement with the Lions Club at Trinity Beach, the Cairns Choral Society, the Centenary Lakes church as well as the Trinity Beach Lions and MS (TBLAMS) Support Group all mean I am a valuable member of this community.

It would be great if this could continue for many years to come. I am concerned that my condition will deteriorate so I am unable to make the valued contributions I have been able to make so far.

I need the NDIS to provide the assurance that the support I need will be available when I need it most. Please make this something other than a political football … my hope is that there can be a bi-partisan approach to getting this done and NOW!!

The previous speaker, my friend and colleague the member for Hunter, pushed and stressed the need for a bipartisan approach. I think that has been very much accepted through the course of this debate, and I am confident that we will be able to continue like that.

Another face to this debate is Cindy Eagle. She lives in Edge Hill and has a particularly tragic story. Her nephew was born 12 years ago and as a newborn suffered blood clots in his brain. He is severely disabled, cannot walk or talk and still has to wear nappies. He has cerebral palsy, a blood-clotting disease and epilepsy, and in his first year he had dozens of fits every day. Cindy does not know how her sister and her husband do it. The whole family scrimps and saves for equipment; everything for the disabled is so expensive and, at this point in time, government help is next to nothing.

She tells me that her sister has had to sell their house, that they have lost their super funds and that they have moved rental homes 14 times in the last 10 years trying to get somewhere suitable—which appears to be impossible. In 12 years they have not had a holiday or even gone to the movies together. There always has to be one of them by their son's side due to his complicated medical requirements, and he certainly cannot travel. He needs so much therapy to get a piece of a decent life, but this is beyond their means: they live every day just to get by. They love their son to death, but they have lost their lives and are under immense stress, pressure and physical exhaustion. This could be you or one of your loved ones at any time. Life as you know it could disappear and you could exist in hopelessness and misery. She thanks us, as members of this place, for our commitment to this cause, in the hope that she will be able to see the establishment of this NDIS.

Katherine Kramer from Kewarra Beach is a full-time carer for her brother, who was injured in an accident many years ago. She says that:

We are fortunate in that he was covered by insurance. This has enabled us to look after him in his own home. Many others are in similar circumstances but can't afford to care for their loved ones due to financial pressures and lack of resources. The NDIS can do this for them.

Jacqueline Black, from Freshwater, is an occupational therapist. These are people who are right at the coalface, who are providing the service and the care at the moment, and who certainly have a very strong interest in and a very comprehensive understanding of the challenges and the issues that are faced by individuals and families in dealing with these problems. Jacqueline has said:

I have worked with many people with disabilities and their families. Every one of them, as individuals and as family units, would have benefited from improved access to therapy, equipment, appropriate housing and carer support. Their participation in the community, at school and in the workplace could always have been better facilitated. The NDIS is necessary to begin dealing with the compromised and inequitable provision of services that currently exists.

We hear the same from Maree Cotton from Cairns, who also works for a disability employment service. She says:

I see so many people receive different levels of support depending on how and where their disability was acquired. We need to provide people with disability and their families and carers with regular care, support and the equipment they need.

Shane Yule—who is another amazing individual—is from Manoora. He is youth worker for disabled children:

The hardest part of my job is dealing with the system. The kids are an absolute pleasure to work with but it's sad to see how many kids go without and don't get the funding they deserve. Why should disabled people be disadvantaged? Please support this cause.

The challenges that these families face every day are the justification for establishing the NDIS—no-one in this place would dispute that.

However, at the end of the day, this is an insurance policy and it certainly needs to be properly funded. It may well be that we need to incrementally introduce it to make it affordable. That is why the coalition has proposed a bipartisan parliamentary committee—so that support for the scheme does not waiver across three terms of parliament and along with the nine different governments that are going to be needed to make this system work.

Unfortunately, I have got to say that there have been claims that the NDIS is owned by one side of parliament or another. I would argue that that is not the case. I think that everybody in this place and everybody right across the whole political spectrum has shown very, very strong support for this. But we really need—and this is something that the government needs to do at the moment—to be told how this NDIS is going to be funded. We have supported the government's commitment of $1 billion to the NDIS in the federal budget, but we know that it is going to cost a lot more than that. The Productivity Commission has stated that $3.9 billion will be necessary over the forward estimates for the first phase of the NDIS.

I look forward to hearing how the government will account for this and make appropriate provisions in the coming budget, because we cannot raise expectations for these desperate people unless we are absolutely able to deliver these services. Every day that we do not do this, there are families in my area and many other areas that are going to be let down. My side of politics and I certainly want the NDIS to be a success. We have enthusiastically supported each milestone on the road to the NDIS. We want the launch sites to run very, very smoothly. We believe that the NDIS can be delivered within the time frame recommended by a government that can manage its finances well. We stand ready to work with the government in all jurisdictions to make the NDIS a reality.

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