Andrew Leigh

I spoke in parliament today in favour of a bill to create the NDIS.

National Disability Insurance Scheme Bill, 7 February 2013

Last month, I received a letter from Denise Reid, one of my constituents. Ms Reid wrote to me about her son Tim, a 21-year-old man with Down syndrome. She has given me permission to share the contents of that letter with the House today, so I want to begin by reading part of it. She writes:

‘I receive a part payment, sixty-five dollars and fourteen cents per fortnight, with the remainder paid to my ex-husband. We share care of our son, who is 21. He has Down syndrome. From time to time, Centrelink reviews eligibility for this payment. I find this extremely frustrating. My son has an intellectual disability. There is no cure and he will never grow out of it.’

She goes on to speak about him. She writes: 'Tim is a helpful, sensitive, caring and observant young man with a great sense of humour. He enjoys swimming.' She speaks about his enjoyment of rock and roll music. But then she writes:

‘The payment is small and sometimes I feel like giving up the bureaucratic battle. But I don't. I fill out the form and visit the GP to complete another form and wait to hear if I've been able to prove disability. That makes me sad.’

The story of parents whose children have disabilities that are lifelong having to again and again prove that their children's conditions have not changed is one that you hear so often in discussions around the National Disability Insurance Scheme. It is a particular frustration because parents of children with disabilities work as hard as any other parent in Australia, if not harder. They are constantly dealing with night wakes. They are often having to do hard, physical work. What they do not need is a system that requires them to again and again prove disability, as Ms Reid puts it.

It is with that spirit and with a recognition that past governments have not provided adequate support to people with disabilities and their carers that this government is putting in place a National Disability Insurance Scheme. It is a nation-changing reform. Today is a significant moment for the almost one in five Australians who have a disability, have a family member with a disability or are a carer for someone with a disability. The first stage of the NDIS will benefit more than 20,000 Australians later this year.

I wrote a piece for the local Canberra Chronicle newspaper just over a year ago and noted that if you feel like you have had a tough week just try chatting with a parent who is caring for a child with a profound disability. Not only will they be bleary eyed and bone tired but they might be struggling to make ends meet, sometimes contending with their own health issues. Parents of children with a disability can find themselves caring for a 40-year-old who has the mental abilities of a toddler.

Like every parent they love their children, but it is because of that love that many of them face a searing fear from that awful question: what will happen to my child when I am no longer here? The National Disability Insurance Scheme, by providing better care to people with a disability, may hopefully allay that fear. In so doing it will resolve some of the indefensible anomalies in the current system. For example, if you become a paraplegic in a car accident you are more likely to get a payout than if you fall off your roof while cleaning the gutters. If you rent a car in one state and have an accident which causes a disability then you will receive different treatment than if your car is registered in a different state. That is true even if you are renting from the same car company. 'Check the number plates,' people with a disability will sometimes say. That is how much of a patchwork our current system is.

A National Disability Insurance Scheme system will not be cheap. Its path forward will not be straightforward because we need to bundle in many of the current supports that are provided. But thanks to the leadership of the then parliamentary secretary Bill Shorten, the government commissioned a report on the National Disability Insurance Scheme from the Productivity Commission. They came back with a strong recommendation that we go ahead. That is why we are working with the states and territories to build the foundations of a National Disability Insurance Scheme.

I am really proud that under the leadership of the Chief Minister Katy Gallagher, herself a former support worker for people with disabilities, the ACT did not skip a beat before signing up. Around 5,000 Canberrans with a disability will benefit when the ACT becomes one of the launch sites later this year.

I am a strong advocate of the NDIS. My parliamentary window has one thing in it—a Count Me In poster, put together by the Every Australian Counts campaign. I have spoken before in this place on the issue of disability and the importance of the National Disability Insurance Scheme. In my own electorate of Fraser, I have held two community forums on the NDIS, seeking input from Canberrans about the scheme.

In August last year, one of the forums was held with Senator Jan McLucas and the member for Canberra. We held a forum in the Griffin Centre and heard many accounts from people with disabilities and their carers. Before that, in October 2011, I held a forum in Belconnen with Daniel Kyriacou from the Every Australian Counts campaign and members of the ACT Labor Party's Community Services and Social Justice Committee. That was, again, an important conversation about what the NDIS means and how people can work with the campaign to bring about an NDIS. Those forums were well attended by carers, people with disabilities and Canberrans of goodwill, keen to see this important social reform become a reality.

Earlier that same month, I met with a group of people with disabilities and their carers at a morning tea roundtable in my electorate office to talk about what an NDIS will mean for people with disabilities and for organisations that are supporting people with disabilities. I want to thank Simon Rosenberg, Luke Jones, Bob Buckley, Kerry Bargas, Trish and Glenn Mowbray, Susan Healy, Mary Webb, Kerrie Langford, Robert Altamore, Fiona May, Eileen Jerga, Adrian Nicholls, Christina Ryan, Brooke McKail, Sally Richards and others for sharing their stories and concerns with me. They helped me to better understand the issues around a National Disability Insurance Scheme and why Australians with disabilities and their carers need this scheme so much.

I appreciated a visit to the 1RPH print handicapped radio station in the ACT. Again, they are providing an important support to people with disabilities. I have visited agencies that support people with disabilities who have spoken about the charges that they will face in adapting to an NDIS.

The Every Australian Counts website asks this simple question: which developed country would expect someone to live with two showers a week?' At the moment, the answer is Australia. We heard at the forum in the Griffin Centre with Senator McLucas the story of a Queensland woman who has to reapply every 15 days for emergency care. We heard stories about mothers of children with Down syndrome who have to constantly prove that their child's chromosomes have not changed, stories like the one with which I began my speech.

We heard a story about a child in the Northern Territory who has to hand in his hearing aids when he leaves school at the end of each day. The hearing aids have to stay at school and he has to go home without them. You cannot hear these stories in a prosperous nation like ours without feeling a sense that there is something profoundly wrong with our nation's social contract, that we need to put in place a system which shares the cost of disability support services across the community. Yes, member for Longman, that involves states and territories doing more. That is not playing politics. That is the simple reality of building a national disability insurance scheme—an NDIS that will enable people with a disability to exercise more choice and control over their lives.

This reform is on par with Labor's legacy reforms of Medicare, universal superannuation and native title. But, as the NDIS rolls out, we need to keep on asking those whom it supports: 'What do you want and how can we deliver it?' The message that I have heard in the regular forums that I have conducted is that assessments under the NDIS need to be done no more frequently than is necessary and that over-frequent assessments are enormously frustrating and at their extreme can cost carers their jobs.

As I have noted, the ACT is one of the sites leading the way in improving care for people with disabilities. In July last year, I was pleased to join the Prime Minister and Chief Minister Gallagher at Black Mountain School to discuss the issues facing people with a disability. I pay tribute to Black Mountain School for the hard work that they do. In Hackett, my own suburb, Ross Walker Lodge is a supported accommodation facility for six people with intellectual disabilities. Ross Walker preached the social gospel and was a strong advocate for the most disadvantaged people in our community. By coincidence, his life followed a similar trajectory to that of my paternal grandfather, Keith Leigh, who was also born in the 1920s and came to the Methodist ministry after World War II.

In Holt, I attended an event at Sharing Places for what is known as a DisabiliTEA morning tea. That was part of a campaign for a national disability insurance scheme. Sharing Places focuses on providing day services to adults with an intellectual disability, and I appreciated meeting with the clients and carers alike. Some of them had been working in the sector for decades and they told me it was the most rewarding work they have ever done.

In December last year, I joined the member for Canberra in announcing the three ACT based organisations that received Commonwealth funding to help people with a disability, their carers and families adjust to the options available under an NDIS. The National Rural Health Alliance, Disability Advocacy Network of Australia and ACT Disability, Aged and Carer Advocacy received nearly $300,000 in funding to get ready for the introduction of an NDIS.

Last week, the Prime Minister gave an address at the National Press Club in which she spoke about how the NDIS is part of the government's vision for a fairer nation. She noted that in July we will launch the NDIS in five locations around Australia and pointed out how the NDIS is in the Labor tradition of knowing that it is smart policy to make us a fairer nation. The Prime Minister said:

‘… risk is shared as well, where those hit with life's cruellest blows get the help they need.’

That is what this bill will do. It sets out the framework for an NDIS and establishes important principles for a person becoming a participant in the scheme, how participants will develop personal, goal-based plans, and how reasonable and necessary supports will be guaranteed. The framework sets out how people will be able to choose how they manage their care and support.

The first stage of the scheme will, apart from the ACT, also be launched in South Australia, Tasmania, the Hunter in New South Wales and the Barwon area of Victoria. I acknowledge the work of the leaders in those jurisdictions in making this happen. The principles of the framework are based on giving people with a disability individual care and support that is based on their needs, giving them real choice and control over these supports, fostering innovative services that are delivered and coordinated locally, and bringing long-term certainty to the resourcing of disability care and support. We want to give people with a disability the security that they will get what they need over their lifetime.

I want to thank and acknowledge the advocates, those working in the sector, the family members and the people with a disability who have fought for a fair system that is based on their needs and that empowers them with more choice and control. As I have acknowledged before, it was Minister Shorten who initiated much of this reform but I also want to recognise the hard work of Minister Macklin, the Prime Minister and Senator McLucas, who have worked together to make Australia's social contract a little stronger, to make us a little fairer as a nation and, hopefully, to improve the lives of thousands of Australians with a disability and their families and carers.