Monique Ryan (Kooyong, Independent) Share 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.

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