By bobb |

By Natassia Chrysanthos

A diagnosis of autism is unlikely to be enough to guarantee future access to the National Disability Insurance Scheme as the government prepares to clarify that individualised packages were designed only for Australians with profound disabilities.

As federal and state governments this month consider the findings of an independent review seeking to make the $40 billion scheme more sustainable, Bill Shorten, the minister responsible for the scheme, gave a series of radio interviews flagging changes to the way children would access autism support once ministers worked through the review’s recommendations.

National Disability Insurance Scheme Minister Bill Shorten.

National Disability Insurance Scheme Minister Bill Shorten.Credit: Alex Ellinghausen

The larger-than-forecast number of children with autism and developmental delay joining the scheme is part of the reason its costs have spiralled and are projected to reach more than $100 billion by 2032, making it one of the federal government’s fastest-growing budgetary pressures this decade.

Shorten said the scheme “can’t be the surrogate school system” as he stepped up his calls for education and other systems to better support more than 235,000 people under 18 who have joined the scheme with autism or developmental delay because they struggle to find help outside it.

More than 8 per cent of five- to seven-year-olds are now on the scheme, leading some experts to suggest that level 1 autism diagnoses in Australia have gradually disappeared and been replaced by level 2 diagnoses, which typically qualify for support.

“The [NDIS] was designed for people who need assistance with core functioning, with the most profound disabilities. I don’t think the scheme was ever intended just to say, ‘I have a diagnosis, therefore I’m on the scheme’,” Shorten said on Monday.

“One thing that we have to have a conversation about is rather than just saying, ‘I’ve got autism 2, therefore I’m on the scheme,’ it’s ‘How does my autism affect my learning?’

“Obviously, every person is an individual and unique and it all depends on evidence. We just want to move away from diagnosis writing you into the scheme. Because what [then] happens is everyone gets the diagnosis.”

Asked if this meant there would be new guidelines, Shorten said, “I think we need to have clarity around entry”.

A recent research paper by scholar Maathu Ranjan, who is on leave from her role as a senior actuary at the National Disability Insurance Agency, also suggested the scheme could explain why Australia’s autism diagnosis rate outstrips the global average.

But while Australia’s autism rates are higher than in the UK and the United States, they are on par with Japan, where early intervention is common and has been proven to help children later in life.

Shorten said he did not question people’s autism diagnoses or the benefits of early intervention.

“I’ve got no doubt that diagnosis may be correct ... We all know early intervention is an excellent tool to help get kids with developmental delay to do better because we’re helping them earlier,” he said.

“But the NDIS is in danger of becoming the only lifeboat in the ocean ... So we’ve got to have a conversation in Australia about helping kids with milder forms of developmental delay who don’t need to be on the NDIS.”

NDIS architect Professor Bruce Bonyhady, who co-chaired the review, said recently that children’s developmental difficulties and disabilities are mainstream issues that should be serviced in homes, early childhood settings, schools or family centres, rather than in clinical settings.

But Shorten said there would be no overnight changes to how people access support.

“Anything we do has to be done with people, not to them. There’ll be a lot of fear and panic because [quite a lot of people are] on the scheme because there is nothing else,” he said.

“We’ll walk, we won’t run. This will be a transition, it won’t be an overnight earthquake.”

The review is expected to be published after a national cabinet meeting next month.