When the NDIS becomes the only option: families are flooding the scheme

One in 10 children in Australia is now enrolled in the National Disability Insurance Scheme — a figure that has shocked even those who helped build the system. Among six-year-olds, the numbers are even higher: 15 percent of boys and seven percent of girls. As governments stall on reforms, the scheme has become a lifeline for families, but also a symbol of systemic failure elsewhere.

Children are now the fastest-growing group within the NDIS. Originally intended to serve a relatively small proportion of children with permanent and significant disability, the scheme has become the default support system for many families navigating developmental delays or autism spectrum disorder diagnoses. This surge isn’t necessarily because of rising rates of disability — it’s because outside the NDIS, services have vanished.

An independent review of the scheme found that early childhood services and health supports in mainstream systems have ‘dried up,’ forcing families to seek NDIS funding to access therapies. In the ‘What We Have Heard’ report, published in 2023, the authors noted that ‘it is not surprising that parents are fighting to get their children with developmental concerns, delays and disabilities into the NDIS.’

Once children enter the scheme, they rarely exit; families fight hard to get in and often harder to stay in. Many parents report becoming full-time case managers for their children, navigating bureaucracy, assessments and appeals in a system that’s both life-changing and exhausting.

For some, the NDIS is transformative. Melbourne mother, Erica Rojas Wood, said her son Louis barely spoke before NDIS-funded therapy. Now, he attends a mainstream school and celebrates birthdays with friends.

“We’re able to do things as a family that we weren’t able to do before,” she told the ABC.

Reform plans have stalled due to disagreements between state and federal governments, especially over who pays for the ‘foundational supports’ that could reduce demand on the NDIS.

Incoming Minister for the NDIS Mark Butler confirmed that foundational supports will not begin on July 1 and are instead delayed, likely until the end of 2025.

Butler has emphasised that the implementation of these supports is ‘tied together’ with several complex negotiations, including finalising NDIS reforms and a new multi-year hospital funding agreement with states.

All State and Territory governments, alongside the Commonwealth, need to agree on how foundational supports will be funded and delivered, since these services will largely fall under state responsibility.

In the meantime, the scheme grows. The cost is projected to surpass $100 billion annually within a decade. Experts have said that without real investment in mainstream health, education and disability support, families will continue to turn to the NDIS — not because it’s the best place, but because it’s the only one.

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