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Stephanie Convery

Chief of Children and Young People with Disability Australia says families are simply seeking help for their children, with the NDIS ‘the only place to turn’

An advocate for people with disabilities has criticised as “unhelpful” and “misleading” reports suggesting families are pursuing autism diagnoses because they see the NDIS as a financial opportunity.

“The NDIS isn’t a sort of financial incentive,” said Skye Kakoschke-Moore, chief executive of Children and Young People with Disability Australia.

“At the moment, the NDIS feels like the only place to turn for children and young people with disability when they need support. But what we also know is at the moment, the current system is broken. It’s unfair, it’s complicated, and really, it’s not delivering results for children and young people with disability.”

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Kakoschke-Moore’s comments followed NDIS minister Bill Shorten’s efforts this week to temper the fallout from reports in News Corp papers that the federal government was planning to cut NDIS costs by tightening eligibility for people with autism diagnoses.

The government is preparing to work through the recommendations of an independent NDIS review at a national cabinet meeting in early December. The review’s findings were delivered to the government in August but have not been made public.

Shorten has been championing the need for reform of the NDIS and what he calls the “disability support ecosystem” since last year, when the October budget projected that the cost of the program would increase from $35bn in 2022-23 to $52bn in 2025-26.

The cost of the NDIS is projected to grow by approximately 14% per year without intervention; the federal government aims to cap the scheme’s growth to 8% per year.

Shorten has not ruled out the changes to NDIS eligibility for autism support, but told Guardian Australia that the government wouldn’t comment on the findings of the independent review until after the national cabinet meeting.

“Our intention is to make sure the NDIS becomes a more human, less bureaucratic experience and that we want to make sure shonky service providers are given short shrift,” Shorten said.

Any changes to the scheme would involve a “transparent transition” but that “the conversation must shift away from ‘in or out’ of the NDIS, which has been the only lifeboat in the ocean for people needing support for too long”.

“All Australians with a disability should have access to timely and effective supports – so that no young child with development delay is left behind at school, in their health care, at home or other places,” Shorten said.

The focus on autism specifically comes after reports that an increase in autism diagnoses in Australia in the last 15 years might be caused by the NDIS creating a financial incentive to seek a diagnosis.

Kakoschke-Moore said it was “hard to place too much weight” on those reports.

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Accessing an autism diagnosis is expensive and arduous, often taking years and costing thousands of dollars. Any subsequent funding from the NDIS for very intensive support is excessively difficult to obtain. Advocates for autistic children and their families told a parliamentary committee on the NDIS in August that 100% of the autistic children with intensive support needs who they helped access the NDIS were initially rejected and had to challenge the decision through the administrative appeals tribunal.

“I think it’s unhelpful, and it’s misleading to imply that families are pursuing diagnoses in order to get financial support,” said Kakoschke-Moore. “What families are seeking [is] help for their children.”

If the rest of society was better designed to support people with disability, then there would not be so much reliance on the NDIS, Kakoschke-Moore said. But at the moment, alternative support structures didn’t exist.

“What we’re hoping this NDIS review will do is present the community a plan for all children and young people with disability to get the support when they need them. That might be accessing the NDIS or it might not be, but what’s important is that those supports are there and that families and children aren’t left to fall through the cracks because government and states and territories aren’t working together to fund the support ecosystem properly.”

Greens senator Jordan Steele-John said on Tuesday the prospect of cutting autism supports from the NDIS would “send shivers down the spine of neurodivergent people and their families”.

“The lack of comprehensive community support for neurodivergent people would see these changes remove the lifeboat [of the NDIS] and actively push disabled people into the sea,” Steele-John said.