More than 135,000 autistic children in Australia may soon lose something the National Disability Insurance Scheme promised them. The right for families to choose the support their child receives. For the past decade the NDIS has allowed many families to select therapists and services that work for their child. If something did not work, they could change it. If a service felt wrong, they could leave and find someone else. Parents could look for practitioners who understood their child and work with them in ways that felt safe and respectful.

That freedom to choose was not a side feature of the NDIS. It was a core principle that Disability Rights activists – including those from the Neurodiversity arm of our movement – fought hard for, for years. Justice for Disabled people must always involve us being the authors of our own stories. We need to be in charge to keep ourselves safe. That’s why the scheme was built on choice and control. This is now under threat for our kids.

Minister for Health, Mark Butler indicated that Autistic children and children with developmental delay are going to be moved into block funded early childhood programs as part of the Thriving Kids reforms, the proposed redesign of early childhood supports connected to the NDIS. The language sounds careful and reassuring. But it describes a fundamental shift in power. Under the NDIS families choose support. Under a curated pathway institutions decide what programs are available, and children are directed into them.

What changes are happening? 

Several changes are happening at the same time. Across Australia Disabled People’s Organisations like CYDA, families and national media like The Saturday Paper, the Daily Telegraph and The Guardian report NDIS reassessments happening quickly and in large numbers – mainly for Autistic children aged 0-8. Plans are being reviewed, revoked and reduced with increasing speed and in increasing number. At the same time more children are being directed toward early childhood gateway services instead of receiving continuing NDIS plans. This diversion is mainly being justified under Section 34 and the idea that supports for these kids are “more appropriately funded” by mainstream systems. Are they? How has that been decided?

Another important change happened in July last year, which is a big part of the picture. The government introduced price changes affecting allied health services under the NDIS. Occupational therapists, speech pathologists and psychologists provide much of the support autistic children rely on. Many of these professionals run small practices in local communities. Most of them are women. When the NDIA cut prices, it became very difficult for our preferred services to continue. Across the country many allied health providers have reduced their NDIS work, capped participant numbers or left the scheme entirely. A lot have left in enormous debt. Accountants are telling these small providers: get out while your debt is small, guys.

For many families the NDIS meant finally finding a neuro-affirming therapist their child trusted. It meant choosing someone who understood their child and could work with them in a respectful way. Now these providers are disappearing. Families and children are losing choice. The system is starting to change. Instead of thousands of families choosing from many providers, there’s a thinning market. This makes it a lot easier for governments to move toward block funded programs delivered by selected organisations. That is what policymakers call the ‘curated pathway.’

Why is it happening?

The original NDIS model spreads power widely. Families choose providers and small practitioners can enter the market. Different approaches to supporting Autistic children can exist at the same time. That diversity makes it difficult for any single model of early intervention to dominate the system.

Over the past decade a relatively small network of Autism research centres and sector organisations has become increasingly influential in shaping policy. In Australia this includes institutions such as the Autism CRC, the Telethon Kids Institute, and the Olga Tennison Autism Research Centre. Internationally organisations such as the Autism Research Centre have played a similar role. Within this network a familiar pattern often appears.

1. Researchers design an early intervention program.
2. The program becomes a formal model with training requirements.
3. Governments are told the program is evidence based. Sometimes they are also told it is “co-designed”. This is music to policy-makers ears!
4. Funding then flows to organisations trained to deliver it.

Over time a small number of programs can begin to dominate the system. These programs operate most easily inside block funded service systems, where governments fund programs rather than individuals choosing services. It is harder for Disabled people and their families to see and resist the decisions that go into the marketing and funding of programs. The curated pathway creates a new early intervention environment where ‘you get what you get – and you don’t get upset.’

To read the full article, please visit the ANPA Website. You can also read EAC’s Thriving Kids Position Statement on our website.

Disclaimer

The views expressed in this opinion piece are those of the author and do not necessarily reflect the views of Every Australian Counts.
Every Australian Counts is a grassroots campaign powered by people with disability, families, carers, and supporters across the country. We welcome a range of perspectives that contribute to an open, respectful conversation about how to protect and strengthen the NDIS for everyone.’