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

On behalf of the Standing Committee on Health, Aged Care and Disability, I present the committee's report incorporating some dissenting comments entitled No Child Left Behind: Report into Thriving Kids Initiative together with the minutes of proceedings.

Report made a parliamentary paper in accordance with standing order 39(e).

by leave—On behalf of the Standing Committee on Health, Aged Care and Disability, the committee's report on the inquiry into the Thriving Kids Initiative, I think, was a very important one. The National Disability Insurance Scheme, the NDIS, was introduced in 2013 by then prime minister Julia Gillard. It has transformed the lives of Australians living with disability and remains one of the most significant social reforms in our nation's history. As a paediatrician, I had discussed prior to Julia Gillard's ascension to the prime ministership the importance of support for families of children who have severe disabilities, and this was really the culmination of what has been a transformative social project.

As a paediatrician, I saw the NDIS really change the lives of many of the families that I had looked after for a long period of time. It meant that they had certainty of support for their children when they were no longer able to care for them or had passed away, and that was the one thing that many of those families were worried about. It really was transformative.

The NDIS now supports over 750,000 people, with an average plan budget of around $82,000. The NDIS, as I've said, has been absolutely life changing and something that I will support forever. As a paediatrician, I've seen firsthand how it has provided certainty for those families and it must continue. However, the scheme faces significant challenges. In a way, it's become all things to all people. It has become the only boat in the ocean or the only port in a storm. While the principles of independence, choice, dignity and equity inclusion remain vital, there have been significant structural flaws—the necessity of a diagnosis. The up diagnosis was happening so that people with relatively mild disabilities could become eligible for the NDIS. I've seen that myself in the process where kids with learning difficulties are being diagnosed with other things so that they could qualify for the scheme. Supports have not been evidence based.

We've had an explosion of support organisations, many of whom are unregistered, many of whom were providing services of poor quality. I've been approached by a number of different organisations, including those in the legal profession, who are very concerned about NDIS supports being provided for people with, for example, intellectual disability ending up in the legal system inappropriately. Data collection has been very poor, so we often don't know what supports are being provided to whom and where. Transparency and accountability have not occurred, and it is really way over time for the scheme to be overhauled.

We also need to make sure that children who have developmental concerns can get access to early intervention and that early intervention happens early, it's not diagnosis dependent and the families can feel supported themselves. And we need to make sure that organisations that provide those social supports for families and for kids with disabilities are appropriately funded and are appropriately available in an equitable manner around the country. In particular, rural and regional areas have really struggled to get the supports they need for kids and adults with developmental disabilities, hence the Thriving Kids initiative announced by Mark Butler, the Minister for Health and Ageing.

It was a really eye-opening inquiry that we did, and I would like to thank so much all my committee members—in particular, the member for Kooyong, the deputy chair, who gave us her time and her expertise as a paediatric neurologist and was incredibly supportive. But so was everyone else on the committee. I've been really overwhelmed by the support I've had from all my committee members. I thank them so much, and I hope that they will get the opportunity to talk about their experiences as well. It has really been an informative process. The chair of the Thriving Kids committee that Mark Butler put together, Frank Oberklaid, has been a doyen of paediatric developmental medicine for the last half a century in Australia and overseas as well, and his advice and his support has also been vital.

I'd like to thank the secretariat for the work that they've done. It was a high-time-pressure inquiry. We did a lot of interviews and a lot of public meetings, and I really am very grateful for the expertise of the secretariat. But, most of all, I'd like to thank my committee members. I appreciated all their input from all sides of parliament, including the opposition members. They've all been highly engaged, very supportive and interested in making the lives of families and their members who have disabilities better.

I commend this report to the House.

Monique Ryan (Kooyong, Independent) Share this | Link to this | Hansard source

by leave—The NDIS is simply not sustainable in its current form and at its current rate of growth. The uncomfortable truth for those of us who care deeply about the NDIS is that it has to undergo reform or we risk losing it altogether. It wasn't designed to support all disabled Australians, but in recent years the loss of community based block funded supports has left a void for those with mild developmental delay and disability. Many participants can't find the help they need, particularly in rural and regional settings. In the absence of alternatives, everyone has had to fight for an NDIS package.

We've got an unsustainable situation where 11 per cent of Australia's five- to seven-year-old boys now have individual packages. We have a demand driven scheme with no means testing and no limits on spending, which is projected to cost as much as $100 billion a year by 2032. That's a scheme for 700,000 people which will cost more than Medicare for 30 million. This is unsustainable, inefficient and inequitable, especially when we're still leaving many people with a disability without the support that they need. So it does make sense that, rather than limiting services to individual packages, we should create a system with defined packages for those people who have a more significant disability and community based programs for younger children with developmental delay and neurodivergence. Increasing community supports for children with emerging developmental delays should be more cost effective. It should increase capacity, and it should promote inclusion.

The Thriving Kids initiative marks a commitment to a new system of evidence based early intervention services, which should provide equity of access for all young Australian children with emerging developmental delay and disability.

We have to acknowledge that there has been very justifiable anxiety within the disability community about these changes. For Thriving Kids to be accepted by the community, it will only win social licence by demonstrating effectiveness, and that includes a real commitment from the states. It cannot be seen as a cost-cutting exercise which will decrease the scope and the quality of the services that are provided. At this point, the state and territory governments are not ready to roll out foundational supports, and so I support last week's announced delay in the launch of Thriving Kids.

This was a short inquiry, and it has not been able to address all of the issues and questions around Thriving Kids, but some things remain clear. We have to make it easier for parents to navigate a system which has often proven hostile and defensive. Many parents told us in this inquiry that their caring responsibilities increased when the family member entered the NDIS. That's a fail. We have to collect better data about participants' experiences and outcomes and the quality, safety and effectiveness of their treatment. We heard repeatedly that the record keeping by the NDIS is inadequate.

We have to ensure that the services are co-designed with peak bodies and with all stakeholder groups and that they reflect the needs of the child not the eloquence of their advocates. We have to determine that these services can physically be provided and we have to improve access to online health services as well. We have to improve the registration policy and compliance and funding system for the NDIS. We have to help providers to decrease red tape. We have to get them to improve their record keeping and we have to cut down on the fraud, which is unfortunately but inevitably a significant issue at this point in time. The Thriving Kids program has to be subjected to regular review when it's rolled out, and it should have an independent inspector-general.

We need better workforce planning. We heard again and again about the deserts where people can't access the supports that they need, particularly in regional, rural and remote settings. It's inequitable and it's unfair. We have to have some better data about where the allied health and other healthcare professionals that we need are, and we have to support them. It's not acceptable that people are waiting years to see a paediatrician in our major cities and that they're paying a large amount of money to do that. We should help more young people join the healthcare workforce by immediately increasing financial support for practical placements for all healthcare students.

The Thriving Kids program needs us to resile from the premise that disabled people should have to self-manage their care and that all should receive support individually. Some things are better done together for efficiency, for economy and even for enjoyment. Success of the Thriving Kids model demands that, as a society, we are able to and will accept our responsibility to include and support all children and to create a system responsive to their capacities and their needs and that we commit to creating and supporting the workforce and the infrastructure which are required to maximise those children's independence and inclusion.

I'll finish by thanking the chair of the health committee. It's been a great privilege to work with Dr Mike Freelander on this inquiry. Mike brings decades of experience to this parliament. He worked incredibly hard with all of the committee and the secretariat, and the report that we have put together summarises very well the generous and considered contributions of almost 500 groups or individuals who made submissions or who came to the public hearings. I echo Mike in thanking our other committee members who worked hard with dedication, with interest, with maturity and with bipartisanship—a rare bipartisanship in this place. I thank the secretariat as well and commend our report to the House.

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

I move:

That the House take note of the report.

Marion Scrymgour (Lingiari, Australian Labor Party) Share this | Link to this | Hansard source

Under standing order 39, the debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.