Additional Comments by Deputy Chair of the Committee

One in six Australians live with disability; 4.4 million people. For many, the National Disability Insurance scheme has been life-changing - it has provided supports essential to living an included life in our society. However, the recent 10-year anniversary of the Scheme coincided with uncertainty and concern about its future.

The fundamental principles of Medicare, our universal healthcare insurance scheme, are equity, efficiency, simplicity and fairness. The NDIS has never achieved those lofty ideals – it’s the problem child in our social welfare system.

Many issues with the NDIS relate to its structure. It was established as an insurance scheme; it was expected that early intervention would decrease the cost of the future care of Australians with permanent and significant deficits. Those individuals were to be provided with personalised individual support packages; it was anticipated that fewer than 500 0000 would be required. The plan was that the remaining 3.9 million Australians with disability would continue to receive mainstream (generally state-based) services.

This has not played out. Almost from inception the NDIS has been the main service provider for most children and adults, as other disability supports and programs – particularly those funded by state and territory governments – have been defunded or removed. Loss of community-based block-funded services has left a void for those with milder developmental delay and physical deficits. This has caused significant inequity; those on the scheme receive much more support than non-participants.

In the absence of alternatives, all needing disability support have had to fight for NDIS packages. That’s led to a situation where 11 per cent of Australian five- to seven-year-old boys, and 5 per cent of five- to seven-year-old girls, are NDIS participants. This is unsustainable. More than 750,000 NDIS participants have an average plan size of $82,500. It’s a huge investment from a generous nation, but we’ve still managed to leave many with no plan and no access to the support they need.

The NDIS was established as a market-based system; it was assumed that supply would be generated in response to increased demand for providers. But you can’t conjure up experienced therapists overnight. There are persisting shortages of psychologists, speech pathologists, and other allied health disciplines. Many participants simply can’t find the help they need.

Federal and state governments have not adequately monitored disability services to ensure that there’s back-up in regional or rural settings and that the services billed are actually provided.

And the Scheme is challenging for providers. The policy and compliance framework can be challenging, worker screening slow, and cashflow an issue.Not-for-profits caring for high-needs and complex participants struggle to compete for staff and to provide their services competitively.

Plan utilisation is higher for those in metropolitan than regional settings. Many participants have, in the course of this inquiry, described confounding inconsistencies in the size of support packages provided to people with the same level of need. The quality of advocacy by planners and parents has mattered, disadvantaging those with less familiarity with bureaucracy and those from culturally and linguistically diverse backgrounds. Lower levels of plan utilisation among Indigenous people reflect thin markets for providers in rural and regional settings, but also difficulties with case management for those dealing not only with disability, but also with other social challenges such as homelessness and poverty.

Cost has been a perennial concern. The NDIS is a demand-driven scheme with no limits on spending. Fraud is an issue, as with all government systems, but the extent and prevalence of system abuse is unclear. The NDIS is projected to cost more than $100 billion/year by 2032 – more than Medicare, or even defence. That figure, however, ignores the original assumption of the scheme: that it would generate revenue and productivity by facilitating employment and engagement of people with disabilities, and by freeing up carers to return to the workforce. The multiplier effect of the NDIS is significant – every dollar spent generates an economic contribution of $2.25. It’s an investment in Australians’ futures.

As a paediatric neurologist, I found the NDIS opaque, frustrating and cumbersome. As a Member of Parliament, I hear often from constituents of their anger and distress with the system. Things have to change.

I’ve long felt that, rather than the individual supports provided by the NDIS, we should create a dual system, with defined packages for those with more significant needs, and community-based programs for infants and young children with developmental delay, autism and neurodivergence. Services which increase community and mainstream supports for people without severe disability, and which provide group therapy for all able to benefit from them, will not only result in better use of resources but might also promote inclusion. This model should be more cost-effective and create increased capacity.

The Thriving Kids initiative is a means to that end. It marks a commitment from the federal government to a new system of evidence-based early intervention services, providing equity of access for all young Australian children with emerging developmental delay and disability.

Thriving Kids was announced less than four months ago; it needs the social licence which will be won only from its demonstrated effectiveness. There has been much anxiety within the disability community about these changes. For Thriving Kids to work it has to obtain the social licence which will be won only from its demonstrated effectiveness. For that reason, it’s really important that it be rolled out only when the state and territory government are ready and the necessary systems and staff in place.

There’s much to do, and this short inquiry has not addressed all of the issues and questions around Thriving Kids; but some things have been clear.

We must address the issue of who should receive foundational supports and when. We must determine how much therapy is enough for children with emerging developmental delays. We must make it easier for parents to navigate a system which has often proven hostile and defensive. We must collect better data about participants’ experiences and outcomes and the quality, safety and effectiveness of their treatment. We have to determine where these services should be provided; in the home, childcare centre, kindergarten, school, or clinic. Children should always receive therapies in a place where they feel comfortable and safe, and it's best that their carers participate in those interventions where possible, but the challenges of home visits and services provided in school settings are significant.

In designing the Thriving Kids initiative, we must use inclusive codesign processes in collaboration with peak bodies and parents experienced in the care of children with disabilities. We have to actively include individuals representing First Nations, and culturally and linguistically diverse backgrounds. The Thriving Kids program should be subjected to regular review, and should have an independent Inspector General. It has to be adequately staffed and funded from the start, to enable both its effective administration and the integrity and effectiveness of data management for the scheme.

The vast majority of providers in the NDIS are not registered providers: this must change, but we also have to improve the registration process to make it less burdensome and more streamlined. We must improve access to online health services, particularly for regional, rural, and remote services.

We need more providers able to support children with emerging developmental delay. There is a significant gap in our health care workforce strategy. We have no channel or mechanism for identifying current or future workforce deficiencies, for setting policy direction and priorities around these, for coordinating actions required across the jurisdictional health systems at a national level and within the National Registration and Accreditation Scheme (NRAS), or for reporting on delivery of agreed priorities.

The NRAS registers 16 health professions in Australia; each of these also has a national board overseeing professional registration, standards, codes, and guidelines. An independent national health workforce planning agency and reduction in registration red tape would help shape a more targeted workforce, identify future demand, and streamline registration processes for healthcare and disability providers.

We’re also failing to capitalize on investment in education by excluding students from the professional workforce due to barriers to practice placements. Prac placements can be very burdensome for students via both direct and indirect costs. The burden falls inequitably on those with caring responsibilities and rural students. The government should extend financial support for practice placements to students from all health care disciplines based on the existing workforce shortages. It’s a false economy to have young people deferring their studies, or going part-time to cover their living costs, at a time when we’re desperate for their skills.

It's been a privilege to work on this inquiry with Dr Mike Freelander, the chair of the health committee, throughout this inquiry. Mike is the kindest of men, who brings decades of experience as a general paediatrician to his leadership of a parliamentary committee aiming to improve the health of all Australians. He led a group of parliamentarians who put aside their political differences to work together constructively and hard on an issue of interest and importance to all our electorates. The committee secretariat also worked incredibly hard over a very intense period, to bring together a report which summarises very well the generous and considered contributions of the almost 500 groups and individuals who made submissions or appeared at public hearings.

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

Dr Monique Ryan MP

Deputy Chair