BILLS - National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021 - Second Reading

BILLS - National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021 - Second Reading Main Image

I'm one of the last speakers, and much has been said in a very bipartisan way about the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021, but I thought it was worth adding my perspective. This bill, of course, implements recommendations of the Robertson review into the death of Adelaide NDIS participant Ann-Marie Smith, and I support it very, very strongly. But it is worth taking several steps backwards to examine the role of the NDIS, the importance of the NDIS and what it means.

From my perspective as a paediatrician, I just want to take the House through a little bit of the history of the NDIS. I started as a medical student in 1972 and I had an uncle who was a paediatrician, and his name was John Davis, always known as Tubby Davis—he was a big man. I remember doing a ward round with him when I was a medical student, and we saw a little girl with Down syndrome. Her parents were very, very anxious—they were older parents—about this little girl, a sweet little girl she was. She'd been quite sick in hospital following complications from cardiac surgery and was recovering. I remember Tubby took me and a couple of other medical students and the resident and the registrar and a couple of the nursing staff into the side room of the Department of Paediatrics then at north shore hospital and he said to me, in front of everyone, 'What do you think these parents are most worried about?' Obviously, at that stage, the worry was if she would get over this cardiac surgery, if she would get over the complications, if she would go home, and that's exactly what I said. But Tubby said, 'Well, that might be the immediate worry, but what these parents are worried about is what's going to happen to their child when they pass away.' That was a very important lesson to me, and throughout my career that was the thing, in dealing with children with disability, that always worried the parents—what was going to happen to their child that they'd cared for and nurtured? It didn't matter what problem the child had, what physical disability, intellectual disability or illness the child had; those parents always worried about what would happen to their child when they could no longer look after them. I saw parents go through incredible difficulties trying to put money aside so that their child could be looked after when they either were too infirm to look after them or, in fact, had passed away.

I had a conversation with Julia Gillard—it would have been around 2007-08, at a meeting that Chris Hayes, when he was the member for Werriwa, had where she was the guest speaker—where she said to me, after she heard that I was a paediatrician: 'We must do better for people with disability. We must make sure that we as a society care for them.' Indeed, she was the epicentre of the beginning of the thinking about the NDIS, and, in fact, was the prime minister that brought it in as a way of supporting people with disability. It's been a wonderful thing. I acknowledge the member for Maribyrnong and I acknowledge Prime Minister Abbott, who also supported the NDIS. It has been a wonderful thing for people with disability. For many of the patients I cared for, it has been transformative, and transformative for their families. It's been a great thing that has nurtured families and nurtured people with disability, and we now know many of them can become productive members of our society and can be supported as they age.

In Australia this has been an ongoing thing in the way we care for people with disability. Many people from New South Wales may remember the Richmond report. The Richmond report was produced by David Richmond, a health bureaucrat, who was asked to inquire into health services not only for people with psychiatric illness but also for people with developmental delays and intellectual disability. When I started my paediatric career at the Children's Hospital in 1978, at that stage there were the so-called special hospitals for special services—they had interesting sounding names like Peat Island, Collaroy Annex, Grosvenor Hospital and Allowah—where people with severe intellectual and developmental disability were housed. As a registrar at the Children's Hospital I was sent there to do clinics, to attend to the health needs of some of those people with severe disability. Some of the conditions they were kept in were less than perfect. Some were good. But there was evolving evidence at that stage that many people with developmental disability could become much more functional members of our society if they were placed in home-like settings rather than special institutions. So, in the seventies and eighties, this process of moving people with developmental disability out of these special institutions into group homes began. The Richmond report very strongly recommended that that be the case. There was increasing evidence that the outcomes were much better for these people if they were kept in a more home-like situation. So the Richmond report brought that to a head, and other states followed suit.

Funding which previously supported institutional care was supposed to be transferred to community care and support. Whilst that happened to a small extent, it was by no means complete. So many families were forced to care for their children and even their adult children at home without proper financial support, which meant that many of these people did not receive the intervention that would have made their lives a lot better. It placed an enormous financial burden on those families. The NDIS was brought in to improve the outcomes for those people and their families, and indeed it did. The relief of many people who had children with severe disabilities was palpable. They knew that the children they'd cared for and nurtured would be cared for for the rest of their lives. It was a way of all of us saying to families who had kids with disabilities: 'We are part of your journey. We will support you on that journey.' That was a very important thing, and it was wonderful for me as a paediatrician and for the families themselves. I saw many kids transition as adults into their own accommodation and their own care situations, group homes, and become independent members of our society. It was a great thing. Indeed, in my electorate of Macarthur there are now many group homes where these children who are now adults are living, that are providing good care for many of these kids.

Prime Minister Gillard, when she introduced the NDIS, knew that whilst it was a significant cost to our society its value was immeasurable. The hope that this scheme evoked in so many families and my patients was wonderful. Many of the families that I'd cared for over the years had their lives changed so much for the better when the scheme was introduced. They were no longer walking the journey alone. They would no longer have to battle for every bit of access to even small amounts of support from the rest of society. It would be provided because that was their right and their due, and it was a wonderful thing to see.

As a doctor, I saw many kids with very high needs. This scheme also revolutionised the way we went about providing supports for them and the interventions that they needed. It took an unbelievable financial burden off these families. I don't know how many of these families had afforded the care for these kids. Some of these kids required multiple medications and special transport. People had to buy special cars to transport kids with wheelchair needs. Kids with cerebral palsy required multiple surgeries. It really removed a financial burden from many of these families.

Much like Medicare, the NDIS will go down as one of the greatest social reforms we've seen in this nation. Ultimately it will be one of Labor's greatest achievements and legacies, one for which I'll be forever grateful to Prime Minister Gillard and others, as I've mentioned.

We cannot ever forget why the NDIS was established and what the scheme aimed to do. So many participants in the scheme have now seen their access to supports limited by the limitations put on the scheme by this government. The latest idea of having independent assessments was just another bureaucratic step to try and reduce access to the scheme for people with disabilities. I acknowledge, however, that many on the other side do understand the value of this scheme and I'm very glad that the government finally stopped the process of independent assessments. It would have been a disaster for many of the families that I look after, and I'm very glad that the government finally saw at least some light.

There are, however, still concerns about the oversight of the scheme, and the terrible situation of Ann-Marie Smith—may she rest in peace—was a sign that we still need to have significant oversight of how the scheme is administered and the supports that we are providing to people with severe disabilities. I'm very pleased that the Morrison government has finally taken action to address the recommendations of the Robertson review. However, as is typical for this Prime Minister and this government, it's a little bit too late. The report was handed down over 10 or 11 months ago and it has been over a year since Ann-Marie Smith passed away.

However, her legacy will be that we make sure that correct oversight is given to the NDIS and that people are provided with the supports that they need. To me, this scheme is of enormous value to our society, and I hope that this government does not continue its attacks on the NDIS. I think that it generally has bipartisan support but that many on the other side, whilst they appreciate the cost of everything, don't appreciate the value of anything—particularly the NDIS. I'm so grateful for all my patients and I will continue to do my best to make sure that they get the best possible access to the NDIS that they can get. I still think there are parts of the scheme that need to be fully supported by this government, such as it being patient centred and making sure that the people who require extra supports get them. In particular, I believe that people with severe disabilities should be supported as far as they possibly can be to lead independent lives.

I think there are many issues with the NDIS which need to be supported more—in particular, areas such as housing; access for people in rural and regional areas; and early intervention support for very young children with severe disabilities, prior to them starting school. We know one thing that supports them is early intervention programs; the sooner they can get access to early intervention, the better. I have been working particularly and very strongly with the Shepherd Centre, which provides support to children with severe and profound hearing loss, to get early intervention support from birth. That is very important for their ultimate outcomes in terms of speech, learning and development.

So I commend this bill to the House. I think this government needs to understand what enormous value this scheme has to the Australian people and I will continue to support it.