As a paediatrician, I've sat in my office many times with families who had children—sometimes young adults—with severe disabilities: things like cerebral palsy, Down syndrome, many other syndromes, many different iterations of disability. I looked after those families and their kids for a long time, and the one thing that all those parents cried out for was some certainty about the future for their children.
I can think of them. Some of the kids I got very fond of. Troy, a little boy that I saw with Down syndrome when he was born, developed something called Eisenmenger's complex, which is a heart condition that's inoperable. I watched him grow and develop. His father died. His mother was left to bring Troy up and care for him in his 20s, 30s and now in his late 30s and early 40s. She spoke to me many times—they were a working-class family—about what was going to happen to him when she was no longer around to look after him.
I remember Justin, with cerebral palsy, who was not mobile. He couldn't speak adequately, but, with the use of a computer and voice activator, he was able to communicate. He was actually very bright, but he clearly needed care all his life. His mum really wondered what would happen to him when she passed on.
I actually spoke to Julia Gillard about this many years ago, when she was first elected to the parliament and she came to a fundraiser for Chris Hayes, then the member for Fowler. She said that what she really believed in was providing a support mechanism where all of us—the Australian population—carried some of that burden for those families, that we shared in that. That was the beginning of her idea for a national disability insurance scheme working much along the lines of Medicare. That came to fruition thanks to the Gillard government. People on all sides of parliament did support it, but it was her vision, and forever I am grateful for that and to her, as are the families that I cared for.
The NDIS has provided so much for those families: the certainty about the future, the certainty that their children, as adults with disability, would be able to get the care that they deserve to maximise their potential for a fulfilling life. That's why it has been so important. Unfortunately, it is after years of neglect by the coalition. I had many meetings with the coalition minister responsible for this, Stuart Robert, about the lack of transparency, the delays in approvals, the lack of understanding of the importance of certainty for these families and the lack of interventions that could have provided enormous help to people with severe disabilities, yet nothing happened. The scheme was manipulated to the point where it became all things to all people. State governments walked away from their responsibilities to care for these kids, and the NDIS was left as the only man standing to provide supports. This has to stop. It cannot possibly be all things to all people.
I've heard terrible stories in my office about people with severe disabilities being denied support when other people with the same disability were getting amazing support. There was no transparency as to why. I've seen providers come and go and exploit people with disabilities to the point where the providers became the reason for the scheme, not the people with disabilities. That is shameful. Many things happened with no transparency and no oversight, so that the scheme was growing out of control. The people I cared for, the people with severe disabilities, were not able to access the supports they needed.
I fully support the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. A huge amount of taxpayer money has been allocated to unproven supports. It was allocated without any real understanding of the purpose or the need, and it was allocated to people with relatively minor issues. It is terrible that the amount of support you get depends on who advocates for you. It's terrible that providers have grown rich by exploiting the NDIS at the expense of their clients. I've seen that happen in my own electorate. There are thousands of people who deserve support but are not getting it, because of the lack of transparency and the lack of oversight of the NDIS. I fully support this bill.
No-one knows the importance of the NDIS better than the Minister for the National Disability Insurance Scheme, Bill Shorten, who early in the process advocated the importance of the NDIS and support for people with severe disability. The NDIS has been extraordinarily important in the lives of the people I've looked after for the last 45 years, and it is wonderful to see how people with severe disability can now rely on all of us to provide supports for them. We help carry the load. We also rejoice in the better quality of life and the improvements in functioning for many people on the NDIS. I thank the minister for the amazing amount of work he has done in providing for people with disabilities—whom we all care for; I know there is bipartisan support for this bill. Importantly, this bill aims to provide transparency and oversight of the functioning of the NDIS and how it supports those with the most severe disabilities. I commend the bill to the House.
Debate interrupted.