NDIS changes: what they mean for autistic children
Mark Butler has flagged big changes ahead for how the NDIS handles autistic children. Here’s what we know.
NDIS Minister Mark Butler has set in train a process for changes to the disability support scheme that will see children with mild to moderate autism “diverted” away from the scheme.
From mid-2027, on his timetable, these kids will no longer be accepted onto the scheme, and those already there will be moved off over time.
This will have profound ramifications for hundreds of thousands of families and for future Australian children born with autism.
The NDIS Minister acknowledges his plan will be “hard for some parents to hear”, but is necessary to “make the scheme sustainable and return it to its original intent.”
So what exactly is Butler proposing, who will it affect, and what does it mean for kids with autism and their families?
How many children with autism are on the NDIS? A lot.
Currently just under 300,000 of the scheme’s 740,000 participants have a primary diagnosis of autism.
Around 43 per cent of NDIS participants are aged 14 and under, with 11 per cent of all Australian five to seven-year-olds on the NDIS. This includes 16 per cent of six-year-old boys, or one in six. In some regions it is even higher, up to one in four boys.
Autism predominates as a diagnosis. Of the more than 140,000 children aged nine to 14 years old on the scheme, around 78 per cent have a primary diagnosis of autism.
Should the NDIS be covering them?
The NDIS was created to provide support for Australians with a permanent and significant disability.
The rules allowed for profound autism to be a gateway in, but this diagnosis is made by clinicians. As the scheme developed, clinical behaviour became biased towards diagnosing higher levels of autism in order to provide desperate families a better chance at receiving the support they need through the NDIS.
With the NDIS covering these services like speech therapy and OT, other government-funded options, most often at the state level, withered. This is the “only lifeboat in the ocean” dilemma, and why numbers ballooned.
As Butler said, some kids with autism will still reach the threshold of permanent and significant disability after his new system is in place. But this will be decided by a “functional assessment” of what they can and can’t do, rather than simply a diagnosis of autism itself.
Under Butler’s plan, those who don’t reach that threshold will be supported in mainstream community settings, such as schools and early learning centres, which a number of experts say is the most appropriate place for them to develop as children. This is disputed by a number of parents.
So are kids with mild to moderate autism disabled or not?
There are many more people living with disability in Australia than those who qualify for the NDIS.
The Australian Bureau of Statistics says about 5.5 million people have a disability. They are weighted heavily toward older Australians, with more than one in two people aged over 65 having some disability.
Around three in four of these are physical conditions, the most common being arthritic conditions and back problems, with the other 25 per cent being mental or behavioural disorders, including autism, anxiety and ADHD.
What’s the big change to the NDIS?
Butler has made it clear, for the first time, that he is prepared to change the eligibility rules of the NDIS to ensure children with mild to moderate autism won’t qualify.
He argues that the NDIS model of individual support packages “just doesn’t suit their needs”.
The minister is at pains to say there will be those with autism who will still have access to the scheme, a line that will be determined by their level of functional impairment.
He has set mid-2027 as the date from when access changes to the NDIS will start.
Where will they go for help?
Between now and mid-2027 Butler will lead the work to build a new Thriving Kids program, aimed at delivering the support children with mild and moderate autism need in community settings.
He has pledged $2bn of Commonwealth money to the program, and is expecting equivalent support from the states, where much of the responsibility will lie.
Butler has set July 1 next year as the date his program will start rolling out. It is a tight time frame, as he has also said the community and the states will be consulted on its design.
Crucially, he has made it clear that no one currently on the scheme will be booted off before they have access to Thriving Kids.
“I’m going to make sure that option is fully up and running before we start diversion from the NDIS. That’s the only right thing to do,” Butler says.
What can parents expect in the Thriving Kids program?
The issue of children with mild and moderate autism threatening the sustainability of the scheme is not new. It was identified by the NDIS review in December 2023, and National Cabinet was charged with agreeing on a system of “foundational supports” in the community for this cohort.
Butler describes this work as having “drifted”. This is an understatement. More than 18 months have passed with no public detail and no apparent progress.
At least the new minister has offered some indication of the likely content of a new program.
He has flagged the creation of a new bulk-billed Medicare item for three-year-old health checks to pick up developmental concerns.
Another is new Medicare allied health items for occupational therapy, speech and psychosocial therapy for these kids.
The educators at early learning centres should be trained to support these children.
And at schools, where currently there may be more than one NDIS-funded therapist alongside a child in a classroom, there should be a more coordinated, school-wide approach.
What are the roadblocks?
The states appear to have been caught by surprise by Butler’s announcement, and recent history shows they are very wary of being lumbered with delivering expensive new programs.
Hence the delay in the negotiations around foundational supports.
Timelines have slipped for these, and it will be Butler’s considerable challenge to drive these changes through over the next two years.
Hundreds of thousands of parents will be closely watching every move.
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