Mike Freelander (Macarthur, Australian Labor Party) Share this | Hansard source

Many people have spoken on this NDIS bill, the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, so I don't want to go into the tiny details of the bill. This is a very personal speech I'm going to give today.

I pay credit to the families and the kids with disability that I've looked after over the last 50 years. It is very personal to me. I remember them all, including many who've passed away. I pay credit to my secretary and office manager, Cheryl Roberts, who worked for me for over 35 years, for the care she gave to her daughter Stacey, who had severe disability. Unfortunately, Stacey passed away in her 20s, not so long ago. I pay tribute to Cheryl and her husband, Dwayne, who looked after Stacey so well and helped her survive for so many years.

I pay credit to the families of kids like Rebecca, Trevor, Troy, Michael, Hamish, Sydney, Harry and Harrison, and the unpaid carers, for what they did to help their kids and to care for their kids—many of them now adults who are doing well thanks to the NDIS. I pay credit to Bill Shorten and, of course, Julia Gillard, who first developed the concept of the NDIS. I remember speaking to Julia Gillard, long before she was prime minister, at a fundraiser for my good friend Chris Hayes, where we spoke about the importance of supporting people with severe disability and their families.

I pay credit to my paediatric colleagues, particularly the people I worked with closely in south Western Sydney—Rick Dunstan, who, unfortunately, has passed away; Andrew McDonald; John Whitehall; Raymond Chin; Melvyn Polon; Mark Westphalen—all of whom gave care to people and their kids with disability over many, many years. You get bonded to those families and you want what's best for them. It's a great privilege to have worked with those people and to have contact with those families that have done so well and provided so much care for their kids and their families.

I pay credit to all the allied health people that provided support for those kids. I want to pay credit to the people who ran intervention services. In particular, I'd like to mention Lorraine Brown, who ran Starting Points Macarthur, which was an early intervention preschool for kids with moderate to severe disability.

I acknowledge that we have created some anxiety in what we are doing now as a federal government to try and make sure that the NDIS is sustainable for the future. I want to pay credit to all in this parliament who support the NDIS, and I include many people in the opposition and crossbench ranks. I know that what we want is to have a system that works well for people with disability. I'm a strong believer in the NDIS and its role as one of the most important social reforms we've ever had in modern Australia.

I'd like to take you through a bit of pre-NDIS history from my own experience as a very young medical student in 1972. I had an uncle who was a paediatrician. His name was John Davis, but everyone called him Tubby. Tubby Davis, a great man who is no longer with us, did a lot to help and to mentor me. I remember doing a ward round with him when I was a medical student, and we saw a little girl with Down syndrome, and her parents were very, very anxious. She'd been quite sick in hospital following complications from cardiac surgery, and she was recovering. I remember Tubby took me, a couple of other medical students, the resident, the registrar and a couple of the nursing staff into the side room of the department of paediatrics of the old 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, their worry was for her to get over this cardiac surgery and get over the complications, and when she could go home, and that's exactly what I said. 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, when they're no longer there to help her.' That was a very, very important lesson to me.

Throughout my career in dealing with children with disability, that was the very thing that always worried the parents—what was going to happen to their child that they'd cared for and nurtured throughout their childhood years when they were no longer there to help them. It didn't matter what problem the child had, what physical disability, what intellectual disability or what illness. Those parents always worried about what would happen to their child when they could no longer look after them. Often that meant institutionalisation.

There were institutions around the country that cared for people with long-term disability. The old Callan Park, which was an institution for those with mental illness, and often became a de facto home for people with intellectual disability when their parents could no longer care for them. There was Grosvenor Hospital at Ashfield in Sydney. There was Peat Island near Gosford, which I remember going to as a paediatric registrar. People with severe disability were managed and housed there when their parents were no longer with them. Thankfully, we no longer have those institutions. We now have group homes. We have fantastic ways of keeping people in their own independent living spaces, which has allowed us to do away with many of these institutions. That's a great thing, and that's thanks to the NDIS.

It was a very important lesson for me, as I've said. It doesn't matter what the problem was, what physical or intellectual disability, the 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 were either too infirm to look after them, or, in fact, had passed away.

I can remember many others. Troy, a little boy I saw with Down syndrome when he was born, developed something called Eisenmenger complex, which is an inoperable heart condition. I watched him grow and develop. I watched his family look after him so, so well. His father died, and his mother was left to bring Troy up and care for him in his 20s, 30s and now in his 40s. Unfortunately, his mother has passed away, and he's now cared for by his sister. The NDIS has made all that possible and has allowed that family to keep Troy at home all that time.

I remember Justin with cerebral palsy. He was not mobile. He couldn't speak. But, with the use of a computer and a voice activator, he was able to communicate. In fact, he was very bright, but he clearly needed care all his life. His mum really worried about what would happen to him when she passed on, and now we know, with the NDIS, he will get support.

These are the faces and the stories that give us the human perspective on the importance of the NDIS and this bill. This bill is about securing the future of the NDIS so that Australians with significant disability have a future with an institution they can trust and rely on for support for the rest of their lives. I had, as I said, a conversation about this with former prime minister Julia Gillard around 2008, at a meeting with the then member for Werriwa, Chris Hayes, and she understood well the importance of the NDIS being sustainable for the future. Whilst the NDIS is a Labor initiative—and it's thanks to Julia Gillard and, later, Bill Shorten—I know that many on the opposition benches have supported it and continue to support it, and it is very important that it is bipartisan.

However, there was a significant problem when the NDIS was first started, and the foundations have been a little shaky. We need to reinforce the foundations of the NDIS. It's important for people with severe disability, and it's important for the whole country. We need to make sure that people with disability are included, are supported and know with confidence that their future is assured.

As an MP now, and in working with the Minister for Disability and the National Disability Insurance Scheme, I'm absolutely committed to securing the future of the NDIS. This bill consists of five schedules that will make this happen, including schedule 1, which sets out the changes to access and eligibility as well as plan management for participants. This follows findings from the NDIS review that the current approach to accessing the scheme is inconsistent and inequitable. It found that the scheme is missing people with disability who require the most support. In particular, I'd like to mention that children that have significant disability and live in rural and regional areas are missing out on supports; children with, for example, fetal alcohol syndrome are missing out on supports in some of our Indigenous communities; and people who have disability but don't have people who are able to advocate for them are often missing out on the levels of support that they need. We need to make sure the NDIS can retain its original intent of supporting people with permanent and significant disability, as was modelled by the Productivity Commission.

The bill seeks to address inequity of access by clarifying the meaning of 'functional capacity' and providing the assessment of thresholds of that functional capacity. It does worry me a little that we are looking at developing a single assessment tool. I am concerned about that. I'm not sure that that will be able to deal with the nuances of the psychosocial supports that are needed and of the community supports that are needed in thin markets in rural, regional and remote areas. So I do have concerns about that. I am confident that the scheme, over time, will be able to deal with these nuances as the new system is rolled out and the Thriving Kids initiative does progress.

Schedule 1 will also enable the minister to make determinations to reset funding for groups of supports like social, community and civic participation and capacity building. This is important because capacity building has been a really important part of the NDIS, and it must be continued and must have transparency and oversight. It's an area where I think there have been some mentions of fraudulent activity occurring, and it's very important that the minister is able to have oversight of that. It's resulted, of course, in the scheme growing too fast, and it means that billions of dollars have been spent on non-evidenced policy and in areas where providers have not provided the care that they should have. If left unchecked, this would skyrocket costs and would not be a benefit to the community and the individual participants.

The National Disability Insurance Agency will have strengthened powers to effectively manage the integrity of the NDIS and to build on existing fraud measures we've introduced since coming into government. We must remember that the NDIS was always intended to be reviewed over time and that improvements can continue to be made. One of the important aspects that we haven't spoken a lot about but is very important is training assessors and making sure that people who are doing the initial assessments are well trained and able to deal with the many, many different presentations of disability and the nuances of that.

It's also important to me that the biggest threats are cost blow-outs, where the scheme could become unsustainable, and it is very important that we make sure that the policies we use are very evidence based and sustainable. Allied health is one issue where we know that, particularly for very young children, very transactional models of care are not necessarily the best practice. I go back to the starting points I spoke about. There are many examples around the country where group therapy and parents supporting other parents can be the most effective ways of getting input for kids with disability and developmental delays.

Currently, only one in 16 providers is registered. 'NDIS provider' can mean anything and is far too broad without proper oversight. It is important that groups are NDIS registered, so there's oversight. It's also important that we look at ways of registering providers such as single providers in a sustainable and affordable way. There needs to be different levels of registration and different costs associated with that.

Schedule 3, based on advice received by the NDIS review that NDIS pricing is not always transparent and we need to make sure that pricing is transparent and sustainable, will establish a clearer and more transparent pricing mechanism. The minister will then set maximum prices for NDIS supports. That's important. Schedule 5 deals with transitional matters relevant to the entirety of the bill. The minister said, 'Within 13 years, the scheme has gone from a dream of generations of activists to a deeply cherished institution,' and I want to make sure it's sustainable. Thank you.

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