A mum of twins with autism has called the plan to divert hundreds of thousands of kids with autism off the NDIS “a betrayal of our children”.
Last week, Federal Health Minister Mark Butler proposed moving children with “mild to moderate” autism or developmental delays onto a new Thriving Kids program instead.
He said the $46 billion scheme has become too big and expensive and the government wants to scale growth down from 8 per cent to 6 per cent.
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Butler’s announcement came in the wake of a Sydney Morning Herald report which found seven in 10 new people were joining the NDIS for autism.
It also revealed 56,000 people who signed up for the NDIS between June 2024 and June 2025 had autism listed as their chief diagnosis.
According to Butler, the scheme is ”not the right fit” for all of them.
But he assured the nation that “some people for whom autism is permanent” will remain on the NDIS.
Those words left Adelaide mum Lisa Goodwin fuming.
“When Butler said that, I was screaming at the TV and crying,” she told 9news.com.au.
“That’s because autism is a lifelong diagnosis – and that’s something the person making decisions about the future of Australian children with autism should know.
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“We fight so hard as families with autistic kids [but] he doesn’t seem to have any idea,” Goodwin said of Butler’s comment and his proposed plan.
“It shows a lack of understanding for the autism community.”
Now she’s terrified that lack of understanding could result in vital support being ripped out from under her children and countless others.
Families blindsided
Goodwin’s nine-year-old twins have been on the NDIS for most of their lives.
“I had to apply three times before I got them onto it,” she said.
“Now I’ve just finished a two-year fight with the Administrative Review Tribunal (ART) and with the NDIS lawyers because they cut [the twins’] funding.”
Now the twins are on a non-flexible funding plan which allows them to access selected services like occupational therapy, speech therapy, and psychology
Managing their NDIS plans on top of daily medications, specialist appointments and education is exhausting.
“It’s a constant fight for your child, the constant advocating, constantly having to prove your child is struggling,” Goodwin said.
But she’d rather jump through hoops to keep her kids on the NDIS than see them diverted to a new program she knows nothing about.
Many parents in the autism community feel the same way.
What is ‘mild and moderate’ autism?
Only children with ”mild to moderate” autism will be diverted from the NDIS under the new plan, but what that means and how it will be assessed remains unclear.
That’s a red flag for disability advocate and board member of the Regional Autistic Engagement Network (RAEN) Heidi La Paglia Reid.
”‘Mild and moderate’ autism aren’t actually valid terms,” she told 9news.com.au.
“They are not terms used by diagnostic criteria, and they do not accurately reflect people’s needs.”
There are three levels of severity of autism spectrum disorder per the DSM-5, the standard classification of mental disorders: level 1 – requiring support, level 2 – requiring substantial support, and level 3 – requiring very substantial support.
But even within those levels, support needs are not linear.
“You can’t just say, ‘well, your autism is mild, so therefore you have no support needs,’ because it just doesn’t work like that,” La Paglia Reid said.
The Thriving Kids question
Children classified as having mild to moderate autism will be moved onto the new Thriving Kids program by July 2027 and the Australian government’s initial investment for the program will be $2 billion.
But families have been told very little about what the program actually entails.
“There’s no details, no transparency, no guarantee to access therapy or meaningful support,” Goodwin said.
A fact sheet from the Department of Health, Disability and Ageing said Thriving Kids will “focus on identifying developmental concerns earlier” and establishing a national system of supports by building on existing mainstream and community services.
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La Paglia Reid fears this could lead to a “one size fits all” approach, to the detriment of children with autism.
“Thriving Kids will essentially take away individualised supports from families and from children, and instead offer block funded programs,” La Paglia Reid said.
“But we know that autistic children are not all the same, people have different needs and require different supports, and that is the benefit of the NDIS.”
Butler also said the government has been considering initiatives like bulk billed child development assessments and Medicare rebates for allied health supports for families no longer eligible for the NDIS.
But that could price some out of being able to afford support services at all.
“This is going to particularly disadvantage single mums, families on low incomes, First Nations families,” La Paglia Reid said.
New plan could disproportionately affect girls
Research has shown that girls and women with autism tend to be diagnosed later than their male counterparts, if they’re diagnosed at all.
Goodwin’s daughter was diagnosed almost four years later than her twin brother.
Most diagnostic criteria for autism are based on how it presents in males, and females tend to be better at masking their symptoms, meaning they’re often perceived as needing less support.
La Paglia Reid worries this could lead to girls with autism disproportionately being lumped into the government’s ‘mild to moderate’ category.
“We know that women and girls are already under-serviced by the NDIS and by disability supports and this is likely to only widen that gap even further,” she said.
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‘The NDIS is life-saving, not a luxury’
The Thriving Kids program is slated to roll out in phases, with the first services to be available from as early as July 2026.
Families like Goodwin’s have less than a year to prepare their children (and bank accounts) for what might happen if they’re forced off the NDIS.
She started a Change.org petition calling to halt the plan, as did RAEN. They now have a combined 12,000 signatures.
“Our children are not ill, they are not going to get ‘better’,” Goodwin said
“They are autistic and it’s with them for life so we need to ensure that they will grow up to be the best they can be.
“The NDIS is life-saving, not a luxury.”
La Paglia Reid added that, though the plan may well cut NDIS costs, it could hurt Australia’s bottom line.
A 2021 report estimated that every dollar spent on the NDIS puts $2.25 back into the economy.
“Ripping those supports away is actually going to cost the government money longer term,” La Paglia Reid said
“I think that the government has a lot of things to answer for.”
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