Katie Koullas worries her two autistic daughters will lose vital support under planned changes to the National Disability Insurance Scheme (NDIS).
The federal government will divert people with what it calls "mild to moderate" autism into a new program, Thriving Kids, starting in July 2026.
Only those with "permanent and significant" autism will remain eligible for the NDIS, Health Minister Mark Butler said when announcing the plan this week.
Koullas, who runs Yellow Ladybugs — a charity for autistic girls, women and gender-diverse people — said she was "surprised" and "heartbroken" by the announcement.
"One of the biggest risks is that this announcement divides our community," Koullas told SBS News.
"It's turning us against each other to prove our need for support. That's really dangerous."
"I'm autistic and I've got two autistic teen girls. We would be considered mild as per the minister's statements, but what's damaging about that is that our experience isn't mild at all."
Koullas says the NDIS has provided her family with reliable, individualised support. She fears the new program could mean losing that — with damaging consequences.
'No such thing as mild autism'
Butler argues the NDIS was never intended to cover children with "mild to moderate" autism, but has become the "only port in the storm" for families with no other options.
He says the new program will provide a "broad-based mainstream system of supports" for those children, while those with more significant needs will stay on the NDIS.
But Koullos says language like "mild" is harmful.
"Mild doesn't actually exist as a clinical term. It's quite damaging because it invalidates experiences," she said.
"Everyone's needs fluctuate. We're not saying everyone has the same needs, but grouping people in terms of 'mild' really dismisses those internal struggles or those hidden needs that often get unmet.
"We've fought so hard to try and change the narrative around the autistic experience, and I fear this is taking a massive step backwards."
The announcement also comes just months after the federal government released Australia's first national autism strategy, committing $42.3 million towards implementing the first phase.
Greens senator Jordon Steele-John called the move "deeply shameful".
"Autistic Australians are being used as a political football, and that is simply unacceptable," Steele-John said in a statement.
"Autism is lifelong. There is no growing out of it. The Minister's suggestion otherwise denies reality and risks stripping people of the supports they need to thrive."
He accused the government of using labels — like "mild" and "moderate — that have "no clinical basis".
Opposition health spokesperson Anne Ruston said "there needs to be more detail" announced about Butler's plan.
Butler has said the changes will help rein in NDIS costs, which are projected to reach $52 billion in 2025/26.
The federal government released its first national autism strategy in January. Source: AAP / Darren England
Concerns about 'one size fits all'
The exact design of Thriving Kids is unclear, though some have suggested it could resemble other programs such as Inklings, which operates in South Australia and Western Australia. The program is aimed at babies aged 6 to 18 months who show early differences in communication development and offers 10 sessions every six months with a practitioner.
Medicare items for occupational therapy, speech pathology and psychosocial therapy would be considered for the Thriving Kids program, including a bulk-billed check-up for three-year-olds, Butler said.
Koullas worries such a model would replace the choice and flexibility families now have with the NDIS. "The NDIS is around choice and control and ongoing relationships," she said. "This is a one-size-fits-all approach that is not customised, it hasn't had any autistic input or approval."
Through the NDIS, autistic people are able to access a range of support — including support workers, peer programs that links other autistic people together based on their interest areas, music and art therapy, or support to take autistic people out into the community (like shopping centres) to foster independence.
"Perhaps there are some cohorts that may benefit from it, but we haven't had enough information to understand what that nuance is. To be making these announcements without any reassurance for the community, to our people, is damaging and scary."
Limited consultation
Butler expects states and territories to collectively match his $2 billion funding pledge, but state politicians, including Victorian Premier Jacinta Allan and WA Disability Services Minister Hannah Beazley, said they learned about the plan from Butler's press conference. NSW Premier Chris Minns warned he would not "sign a blank cheque" without further detail.
Jenny Karavolos, co-chair of the Australian Autism Alliance, said the lack of consultation was concerning. She said the program appeared to be a version of targeted foundation reports, which saw some consultations late last year, but was surprised the health minister launched a specific program.
"We haven't had any consultation, so we're a little concerned about what this actually means for autistic children and their families," Karavolos told SBS News.
However, she remains "cautiously optimistic" given Butler's commitment to co-design.
"We're understanding that this is in concept stage and the reason we're cautiously optimistic is that there has been a commitment that there will be time to consult and develop and design this properly."
Butler has assured families that no one will fall through the cracks, saying no one would be taken off the NDIS without being moved to the new program. But Karavolos is still concerned.
"We need an integrated and interconnected disability ecosystem … there are gaps and people bounce from system to system," she said.
"Of course, there are disappointments, but we will continue to advocate until we get that world where not only autistic people, but all people with disabilities, are enabled so they can get great outcomes and live a life they deserve."
A joint statement from disability representative organisations — including People with Disability Australia and Physical Disability Australia — said they were "heartened by the government's continued commitment to the NDIS".
However, they added they were "collectively disappointed that the government chose not to engage with the disability community about their announcement".
The statement said: "The announcements made by the minister came as a surprise to the disability community and representative organisations. This has created further uncertainty for our community."
Correction: An earlier version of this story stated that organisations, including People with Disability Australia and Physical Disability Australia, were "heartened" by the NDIS changes. This was incorrect and should have read that they were "heartened by the government's continued commitment to the NDIS".
