Sharp rise: More than 8 per cent of young school children now on NDIS

More than 8 per cent of young school-aged children are participants of the National Disability Insurance Scheme, fuelling concerns that more severe autism is being over-diagnosed so that families can receive support for their struggling kids.

Quarterly NDIS data published on Friday reveals 11 per cent of 5 to 7-year-old boys and 5 per cent of girls are participants of the scheme – representing a jump of almost one percentage point in just three months.

For participants under 18 years old, who make up more than half of those enrolled for NDIS, autism is the most common disability (54 per cent) followed by developmental delay (21 per cent). Both are more prevalent in boys than girls.

But Jim Mullan, the chief executive of peak autism body Amaze, said the rates of autism suggested by the NDIS statistics were “greater than a scale we would normally expect to see”.

“The increase we’ve seen in [autism] in the NDIS, particularly children, is not explained by what we understand as traditional or conventional autism rates in the population,” he said.

“It could be suggested there is some kind of rorting of the system around autism [diagnosis].”

Mullan said families used to have access to a wider range of autism supports, but they dried up when the NDIS was developed. “Under those circumstances, it’s not unreasonable to find a change in the way the diagnosis is being delivered.”

He said cases that might have previously been considered level 1 diagnoses, which is less severe, were now becoming level 2 diagnoses – which is the threshold for qualifying for the NDIS.

“This is being driven by a group of professionals who know that, if families and children don’t get that level of diagnosis, the likelihood is they get no support at all,” he said.

“There’s no other reasonable expectation for seeing the rates we’re seeing and the fact that, over time, it feels like level 1 diagnosis is disappearing.”

Experts say perverse incentives are driving families to seek more severe autism diagnoses to receive support for their struggling kids, as schools and early childhood systems are not providing enough support.Credit: Getty

Andrew Whitehouse, a professor of autism research at the Telethon Kids Institute and University of Western Australia, said the new data was unsurprising.

“Our systems have developed a perverse incentive for families to seek out diagnoses, and that is doing no favours to anyone because it blows out diagnostic waitlists [and] extends the time that it takes for kids to receive support,” he said.

“Clinical diagnoses are a means to inform and understand. But what these systems have done is make diagnosis the ends. And the sooner we change that the better.”

Whitehouse said greater investment in state and territory education and early childhood systems was essential.

“The NDIS is an incredible system that has transformed the lives of thousands of kids. The challenge is, at the moment, it is NDIS or nothing,” he said.

“Some kids require support through NDIS [but] many won’t need that. They can be supported by other systems. The challenge is those other systems are stripped bare. The investment has not kept up with the growing demand.”

Whitehouse said the uptick in demand for services came as more children were struggling developmentally in 2023 than has historically been the case.

“The cost-of-living pressures everyone has, the obligations for work and employment, the disruptions with regards to social media: all of these present barriers to children flourishing,” he said.

“Unless we develop systems that can promptly and appropriately support kids in their local community, it is difficult to see how we can reverse the trend.”

The latest NDIS report said more children than anticipated had entered the scheme with developmental delays and autism since June last year, blowing out forecasts within just nine months.

The population’s rate of participation in the NDIS rises steeply from birth, peaking between the ages of 5 and 7, before steadily declining until the age of 35.

The scheme is now in the federal government’s sights as costs grow each year and are projected to reach $55.9 billion by 2026-27 – prompting NDIS Minister Bill Shorten to promise to pare back growth by $15 billion in the next four years.

The total number of participants is now 592,059 – which is 2.4 per cent higher than expected in estimates published by the National Disability Insurance Agency in November last year – after an additional 21,209 people joined the scheme since December.

Participants’ plan budgets have also grown at a higher-than-expected 19.5 per cent annual rate so far this financial year, while 4400 more people are accessing supported independent living – adding to the financial pressures facing the scheme.

Shorten has promised there will be no changes to eligibility for the NDIS, including for autism.

He has, however, said that state governments must do more in their mental health and education systems to stop the NDIS becoming the “only lifeboat in the ocean”.

“I’m not blaming people for trying to get support for their kids or support for their family,” he said earlier this year.

“But what we need to do is make sure that if you are an Australian living with a disability which is not that serious or that profound, that there’s still support for you.”

Cut through the noise of federal politics with news, views and expert analysis from Jacqueline Maley. Subscribers can sign up to our weekly Inside Politics newsletter here.