Foreword

Julia Gillard, as Prime Minister, introduced the legislation for the National Disability Insurance Scheme (NDIS) on 1 July 2013.

The scheme is publicly funded, not means tested, and it allocates funds to an individual, their guardian or a private plan manager to purchase goods and services from suppliers for disability support.

In 2024, legislation was passed to better manage the program costs. This latest legislation was introduced in response to the NDIS review which had raised concerns about fraud and poorly targeted support.

The NDIS is now a vital part of our social network and must be strengthened and preserved but how we do that takes time, thought, consultation and examination of the problems that are existing now and what may happen in the future.

As a paediatrician, seeing many families who had children with major disabilities, including physical or psychosocial disabilities and intellectual disabilities, I know how the advent of the NDIS gave certainty that their children would be cared for in the future after they are gone.

The NDIS was welcomed by many like myself working with children and adults with disabilities.

Paediatricians, nurses, disability support workers, psychologists, allied health workers and teachers all felt this was a huge time in history and were very supportive of the NDIS.

The NDIS was officially launched in July 2013. It moved through trial and transition phases to full scheme rollout across Australia by 2020. The NDIS now supports approximately 751,000 participants with an average national plan budget of $82,500 per participant.

The number of participants is increasing annually at around 9.5 per cent as is the budget. Most are children.

There is much conjecture as to why the numbers are increasing so quickly. Many children referred to the NDIS have developmental delays and/or autism. What is concerning is that the change is certainly multifactorial, however if current increases in spending are not altered NDIS spending will be over $100 billion per annum by 2032.

The ideals of the NDIS are important such as independence, choice, dignity, equity and inclusion however the scheme was rolled out with several structural flaws which continue to reduce the effectiveness of the scheme both in terms of its budget efficiency and providing support. This is particularly concerning for young children, as they are experiencing significant delays as well as poor coordination and non-evidence based supports.

The difficulties already mentioned in the NDIS for young children can be broadly summarised as:

1Scheme organisation and management

We have a public system that at its best works well at assessment and providing early intervention but such services have withered and in some cases disappeared with the advent of the NDIS and can be difficult to deliver in thin markets.

We have, since the advent of the NDIS, developed a burgeoning private system that is very transactional, and therapy based and is very good at fostering its own business model. Registration of providers is important as is transparency and review owing to significant evidence of fraud and disfunction.

2Clinical issues

Who gets what supports and when? What does early intervention mean? How much therapy is enough? It is clear that navigating the system can be difficult and the most articulate can get the most support. Clearly supports differ for each individual child but they must be evidence based and delivered as much as possible locally and cost effectively.

3Outcomes, data & evidence

The collection of data about the children themselves, their families, what support they need and their outcomes are extremely important if we are to design a better system.

However, obtaining this information is extremely difficult in the system at present and more needs to be done to make it more transparent, and evidence-based, in the future.

Achieving the best possible outcomes for children and their families, and the taxpayer, is of course the paramount priority. This is best achieved through the appropriate collection of data and evidence, as it is imperative that decisions are made based on what works and what areas need to be rectified, strengthened, reduced or removed.

4Education

Aside from their parents and carers, children with major disabilities receive and rely on substantial support and care from their educators. Early education teachers and primary teachers play an enormous role in delivering life-long learning opportunities for children with a disability; however, the line is becoming increasingly blurred for these educators between being classroom teachers and being forced into therapist, counsellor, dietician etc roles for their students with a disability.

Some indicators have found that approximately 200,000 students in public schools have been identified as having a disability, however they receive no additional funding to assist them, and their teachers, in the classroom.

Therefore, it is now more important than ever that the education and health sectors work together, rather than parallel to each other, as a student’s health outcome, and their academic outcomes, are as important as each other.

Parents and educators recognise significant roadblocks in accessing support as children transition through the different stages of education. It is very important that children with mild and moderate developmental difficulties receive support in the transitional stages as they progress into early childhood education, primary education and secondary education if they are to receive the optimal benefit from our education systems.

As has been seen, the advent of the NDIS has led to a number of changes to what were existing systems and to the rise of private providers and the diminution or disappearance of publicly funded supports, run by Federal, State or Territory jurisdictions or not for profit organisations.

The NDIS has subsequently been described as “the only game in town”, “the only lifeboat in the sea” or “the only port in the storm”. It has become very transactional and diagnosis focused leading to overdiagnosis, upgrading of diagnosis and a lack of evidence-based support. It has also led to significant delays in children accessing support, as they wait long times for assessment and diagnosis.

This is particularly true for the socially, economically and geographically isolated.

It is imperative that the NDIS be maintained and indeed strengthened to provide support for all people with severe disability.

Since its advent however, resources for people, including children with mild or moderate disabilities (and these are very subjective definitions) have become dependent on NDIS enrolment and has created significant delays in support being provided, particularly for high risk and high needs groups.

These include a range of children, particularly in some Aboriginal and Torres Strait Islander communities, children in out of home care, children whose parents lack financial resources or are from culturally and linguistically disadvantaged communities.

The announcement by the Federal Minister for Health, the Hon. Mark Butler MP, about the Thriving Kids initiative on the 20th August 2025 did create anxiety amongst a number of groups including parents and providers. However, the vast majority of stakeholders have been extremely supportive as they recognise the importance of early intervention, equity of access and evidence based policy.

I recognise this is a very important Inquiry and that we do already have publicly and not-for-profit funded systems that have provided services described as “foundational supports” for decades, as well as private paediatricians, allied health workers, educators disability support workers and nurses who also have long term involvement in producing care and support to children in whom developmental concerns have been raised.

They also will be important in providing ongoing supports but it is important that evidence-based interventions are followed and that interventions should be equitable and accessible across the country.

There are models of care that do provide services in rural, regional and remote areas, e.g. Royal Far West, Royal Flying Doctor Service, Angel Wings and many others.

These services can be strengthened and enhanced in virtually every State and Territory.

In some areas, ‘Flying Squad’ multidisciplinary teams lead by a developmental paediatrician (or other developmental experts) could use a hub and spoke model of care. This could provide assessment, training and help if there were concerns raised about children in regional, rural and remote areas.

Digital support, such as the Triple P parenting program, as well as programs provided by Karitane, Tresillian, Aspect and many others can also be provided on digital programs around the country.

The Thriving Kids initiative is hugely important to the future of our children and I thank the Health Minister for allowing our Committee to examine the needs and how to implement them.

I would like to thank all those who made submissions (almost 500 groups and individuals) and who appeared at public hearings. I would like to thank my many paediatric, health and education colleagues who have given me advice about how to proceed and how to improve outcomes for children and families who require support.

I would like to thank also everyone who has helped families deal with the needs of their children who have disabilities, most of who go above and beyond expectations to brighten the future for those children and their families.

I would like to thank the Committee members, all of whom were very engaged, positive and supportive of the Committee’s work. I would like to give special thanks to my esteemed Deputy Chair, Dr Monique Ryan MP, for her dedication and ongoing support of this Inquiry, for which I am deeply grateful.

I am also very grateful for the hard work, diligence and intelligence of the Committee Secretariat, especially Mr Paul Zinkel and Ms Kimberley Elliott, without whom we could not have completed our work.

I hope that our report is viewed in a positive light and that it helps improve access to supports for children who have physical, psychosocial or intellectual disabilities or delays, and contributes to making the NDIS sustainable in the long term.

We need to also make the NDIS and Thriving Kids transparent and allow scrutiny, with the ability to embed mechanisms to improve the systems over time.

As a paediatrician and as the Chair of this Committee, I firmly believe that the NDIS must be strengthened and protected to ensure it is sustainable in the future. This is imperative for the children and their families of today, and those of tomorrow.

Dr Mike Freelander MP

Federal Member for Macarthur

Chair