By bobb |

The explosion in children with autism and developmental delay joining the NDIS is undermining the program’s sustainability, according to a review that lays the foundation for a significant overhaul of the rapidly expanding disability support scheme.

In an interim report titled What we have heard, released on Friday, NDIS review co-chairs Lisa Paul and Professor Bruce Bonyhady identified five key challenges faced by the $42.4 billion program, including its fiscal sustainability, the number of children in the scheme, and the retreat of disability support from other sources such as the education system.

Professor Bonyhady, one of the scheme’s original architects, said on Friday the absence of support outside the NDIS meant people were “forced to present their worst side in order to both enter the scheme and then receive a package of support”.

Speaking to AFR Weekend, he said the education system needed to “step up” and support children with a disability, which would take pressure off the NDIS, labelling the availability of support outside the scheme as almost non-existent.

“Children should be supported in the best possible way. The problem we’ve got is that because we have a system today where the only supports for children with a disability is the NDIS, everyone wants to be in the NDIS.”

Disability Minister Bill Shorten launched the review last October after successive multibillion-dollar budget blowouts in the NDIS, which has already overtaken Medicare in cost and is on track to cost $96 billion per year within a decade.

That figure assumes Labor achieves its target of reducing growth in the program to 8 per cent per year by July 1, 2026, which Treasurer Jim Chalmers was forced to recommit to this week after Mr Shorten said the day before it may not be achieved.

Professor Bonyhady and Ms Paul said one of the major challenges of the NDIS was that it had become an “oasis in the desert” for people with a disability, creating an exhausting and stressful environment for participants. There were 592,059 participants in the NDIS as of March, with about 200 people joining the program every day.

“The NDIS was never designed to support all people with disability,” the pair wrote.

“Community supports for all people with disability, as originally proposed, have not been delivered ... This has had a significant impact on the cost of the scheme. It has also left people who are not in the NDIS without support. This is deeply unfair.”

Children drive rapid growth

The lack of support outside the NDIS may be one of the reasons why there were more children on the NDIS than was expected, Professor Bonyhady and Ms Paul said.

“With so few supports outside the NDIS, it is not surprising that parents are fighting to get their children with developmental concerns, delays and disabilities into the NDIS. Then, after receiving early intervention supports, they are not leaving the scheme.”

About 54 per cent of NDIS participants under the age of 18 have autism, and 21 per cent have developmental delay, according to the latest NDIS quarterly report. Eleven per cent of boys aged between five and seven are NDIS participants; 5 per cent of girls in this age bracket are on the scheme. Participation rates are higher in disadvantaged areas.

Asked whether he was concerned about diagnosis shopping, Professor Bonyhady said it was a symptom of the broader issue that there was not enough support for children outside the NDIS.

“When we think about parents fighting for their children to be on the scheme, this is a product of a system that is driving that behaviour,” he said.

The review said the focus on diagnosing children rather than supporting them, combined with a lack of support for young people outside the NDIS and the fact kids were not leaving the program, was “undermining the sustainability of the NDIS”.

“The NDIS is an uncapped, needs-based scheme. However, the NDIS must also be sustainable and its costs predictable for governments and the public. It also must provide certainty for participants and their families.”

Professor Bonyhady said one of the unintended consequences of the limited support outside the scheme was developmental delay was not being picked up as early it would be if there was better support in natural settings, including early childhood settings and through integrated child and family centres.

“If you were to have that, then I think you would see many fewer children entering the NDIS, and many fewer staying on.”

‘Highly inefficient’

Former NDIS official Hassan Noura said the interim report didn’t say anything new, with all of the issues having previously been raised in earlier reports and parliamentary inquiries.

“It almost feels like the government is starting from scratch rather than building on previous work, which seems highly inefficient,” Mr Noura told AFR Weekend.

“The $74 billion dollar question remains what is the government planning to do about these issues? Today’s report offers no clues let alone concrete zero answers to that question – which is surprising given we are less than four months away from the final deadline for the review to hand down its recommendations.

“It’s worth noting that the previous reviews and reports collectively offered hundreds of recommendations – many of which have never been implemented.

“It would be interesting to know which, if any, of those recommendations the government is considering taking up or what alternatives it has come up with.”

The reviewers also said NDIS markets weren’t working as originally imagined, with competition failing to produce better quality services or innovation.