By Mary Ward and Kate Aubusson
Back from the school run at Blackett, in Sydney’s north-west, mother of four Cara Delarue is scared and stressed.
On Wednesday afternoon, Federal Health Minister Mark Butler announced sweeping changes to the NDIS, including moving thousands of children with mild and moderate autism onto a new system, Thriving Kids, as part of a savings push for the $46 billion scheme.
Adam Weeks and Cara Delarue with their four children Ivory, 3, Elijah, 7, Madelyn, 4, and Kohen, 5.Credit: Sitthixay Ditthavong
Butler made several media appearances on Thursday, scrambling to reassure families there would be “no gap between the stools”.
“Kids are not going to be taken off the NDIS because of what I said yesterday,” he told ABC radio.
Two of Delarue’s children have been diagnosed with autism, one mild and one moderate, although she finds those descriptors misleading.
“Sometimes your children aren’t displaying significant signs upon assessment,” she said. “They might show it in every other setting, but not when they’re sitting there.”
Delarue’s son with moderate autism sees a psychologist, behavioural support therapist, occupational therapist and physiotherapist, and previously a speech therapist. She is concerned her son will lose some of this support when Thriving Kids – which will operate through Medicare, schools, childcare, community centres and playgroups – begins in July 2027.
“Not knowing what the future looks like is nerve-racking. Is my child going to lose more support? Potentially. Is it going to all fall onto the school?” she said.
“It’s scary and stressful to think that the push for this might be a way to save money. You’re saving money by having children go without the assistance they need.”
Winston Hills accountant Angela Bensemann’s two teenagers both have moderate autism and are on the NDIS.
For her 13-year-old daughter, who has a severe speech delay, Bensemann said these supports, including psychology and speech pathology, were needed to get her out the door to school.
“My kids got no funding in primary school,” she said. “My daughter spent a lot of time sitting in a room by herself because she couldn’t cope in class.”
Bensemann worried Thriving Kids would ask too much of schools: “It’s going to put significant pressure on the school system and on poor teachers, who are already so stretched and undervalued.”
Autism Awareness Australia chief executive Nicole Rogerson acknowledged parents were “very nervous” about the announcements, but said she was “cautiously optimistic” children with mild delays could access support earlier.
“I don’t think parents should panic,” she said, criticising suggestions every child with autism would be kicked off the NDIS.
“The reality is that those with severe autism will need to be on the NDIS for the rest of their lives.”
Autism in children is diagnosed using a set of standard tests, asking parents about their child’s behaviour and development, and watching how the child acts and plays.
The DSM-5, the diagnostic manual for mental disorders, outlines three categories: level 1 (requiring support), level 2 (requiring substantial support) and level 3 (requiring very substantial support). They are commonly referred to as mild, moderate and severe.
While she believes the “devil will be in the detail” of the new system, Rogerson said it had become too easy for paediatricians and specialists to diagnose a child with delays with autism.
“There’s no blood test. You’re looking at the child and saying ‘it could be’ [autism]. And if ‘could be’ gets you support, that’s the only way you get support,” she said.
“One in seven kids probably doesn’t have autism, but one in seven kids probably isn’t thriving – they’re two separate issues.
“Could this new system potentially mean milder kids receive support they need early, and then they’re on their way?”
Professor Patrick McGorry AO, director of Orygen Youth Health, agreed access to the NDIS was an incentive to get an autism diagnosis.
“We have seen an explosion of diagnoses for ADHD and autism spectrum disorder. A lot of that is not valid,” he said, describing a softening of autism’s diagnostic criteria, driven by a social contagion and consumer demand, which distracted from treating people with serious impairment.
McGorry said it was “ridiculous” that federal figures showed 16 per cent of six-year-old boys were on the NDIS. “The prevalence of autism is a fraction of that,” he said.
Sydney disability policy consultant Emily Cukalevski, whose child on the NDIS would not be impacted by the change, said “greater care” could have been taken with the announcement.
“It comes in a context where there’s just been constant shifting sands with the NDIS,” she said.
“Not that long ago it seemed like the scheme was supporting providing early support to children, thinking that if they receive those supports they may then be able to exit the scheme … now that’s done a 180.”
The federal government is spending $2 billion on the overhaul, to be matched by the states, Butler said on Wednesday.
But, on Thursday, NSW Premier Chris Minns said he could not “sign a blank cheque”, while Health Minister Ryan Park told estimates he would not oversee “a cost shift to the state, and [NSW] picking up the bill through a reduction in [the Commonwealth’s contribution] to our health funding agreement”.
Australian Federation of Disability Organisations CEO Ross Joyce said states needed to “step up” as the NDIS was never intended to provide all support to people with disability.
With Jessica McSweeney and Bronte Gossling
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