People with autism to be at centre of 160,000 NDIS removals

The decision to remove more than 160,000 participants from the National Disability Insurance Scheme in just a few years will most significantly impact people with autism who are already being diverted from the scheme.

Sweeping reforms that will remove some NDIS participants with low support needs, limit spending on social participation activities, and impose new requirements on NDIS providers will save the government $35 billion this decade, and bring growth of the scheme down from about 10 per cent a year to an average of 2 per cent over the next four years.

Those savings measures include a plan to shrink NDIS participation from its current high-water mark of 760,000 people to 600,000 by 2030 — 300,000 people fewer than current projections — and will require further reducing access to the NDIS for people with autism, who are nearly four in five of all new entrants to the scheme, and nearly half of all current participants.

NDIS financial sustainability reports show that cohort is nearly the only group by primary disability type who are growing significantly faster than population growth — with participation rates in most other primary disability types stable and in line with population growth.

The rapid rise in NDIS participation, particularly by children with autism, has occurred in part because disability services outside the NDIS have been absent.

That has led to what NDIS Minister Mark Butler dubbed a “diagnosis gateway” of people being funnelled into the NDIS because alternative supports were not available.

A recent Australian National University study found evidence that the introduction of the NDIS led to a 32 per cent increase in reported autism prevalence, with disability service providers more likely to provide autism diagnoses that would ultimately enable access to the national disability scheme.

The Commonwealth has been finalising negotiations with states and territories that would provide a cheaper program to support children with autism, due to begin in full from next year, and would see children with mild to moderate support needs diverted from the NDIS.

The $4 billion Thriving Kids scheme remains in gridlock, with Queensland refusing to sign a deal to establish the program saying the Commonwealth’s $2 billion share of funding is not enough to cover expenses.

Despite those negotiations being unresolved, Mr Butler confirmed today he would ask the states to create more supports outside the NDIS for those people with lower support needs whom he intends to remove.

With roughly 60,000 new entrants to the NDIS each year, and new entry requirements not beginning until 2028, the government will have to remove more than 160,000 people from the scheme in order to reduce its size to 600,000 participants by the end of the decade.

End to automatic NDIS access based on diagnosis

Mr Butler said a new tool would be introduced from 2028 that would determine NDIS access based on a person’s level of support need, instead of what their diagnosis was.

“In line with the scheme’s original intent, access will be based upon a significant reduction in a person’s functional capacity that impacts their day-to-day living,” Mr Butler said.

“It is our responsibility to make sure that, in the future, these Australians are pointed to the right place.”

Under current eligibility rules, people with certain diagnosed conditions are automatically granted access to the NDIS, including Autism Spectrum Disorders Level 2 and 3.

Those diagnoses describe the requirement for a substantial and very substantial report for people with autism.

A second “B list” of diagnosed conditions may be granted access to NDIS supports if it is determined after an assessment that supports are necessary and helpful. 

Mr Butler has vowed to scrap those “access lists”, which he said were designed to be an interim measure, to be replaced by assessments based on support need.

The new assessment tool will limit access to those deemed to have the lowest support need — about 240,000 participants are deemed to have a “high” level of function, requiring fewer supports.

But the new model for eligibility that would detail who can still access the NDIS has not yet been designed.

Mr Butler said a technical advisory group is being stood up to work through how that new assessment process will work, with legislation to be introduced in May to overhaul access rules.

The shift from diagnosis to level of impairment was a key recommendation of the landmark NDIS Review handed down in 2023, which called for a complete rethink of how NDIS participants were supported.

That review was critical of so-called access lists, saying they led to an inequity where some participants became automatically eligible while others were not, and favoured those with means to obtain a diagnosis.

However, Shadow NDIS Minister Melissa McIntosh said the new program would foist responsibility onto the states for services without consulting them.

“Right now, 761,000 people with disability who receive supports through the NDIS are worried about being reassessed for eligibility to get vital and often life-saving supports,” she said.

Mr Butler said he was optimistic that states would get on board.

‘Troublesome’ timing, with Thriving Kids still being negotiated

Mr Butler’s announcements today have been received with anxiety by the disability community, who now face a new round of reforms to the NDIS even as last term’s reforms continue to be implemented.

Autism Awareness Australia chief executive Nicole Rogerson said it was reasonable that people were fearful of an “overwhelming” suite of reforms to the NDIS.

But she said assessing based on need was a “sensible” move that could ensure those most in need of support received it.

“It’s absolutely fair that in a whole range of areas in life people are assessed, we do this in the health system all the time, we have to assess need to be able to see what the resources are,” Ms Rogerson said.

“I understand why people are really concerned about what that process would be, but I believe we can do hard things.”

However, Ms Rogerson said with the states still not settled on a new state-run support scheme for children with autism who have mild to moderate support needs, the timing was “troublesome”.

“Is it reasonable that some kids with some types of autism don’t need to be in the NDIS? Yeah, OK, I’ll go along with that. Can they be in this system called Thriving Kids? Sure. But we haven’t built it yet, and we don’t know what it looks like, and we don’t know where the workforce is going to come from,” she said.

“That is what is freaking people out.”

Former NDIS Minister Bill Shorten, who helped create the scheme and negotiated its first round of major reforms, told ABC Afternoon Briefing that it was in the best interests of people with disability to have supports outside a scheme designed for the most significant, permanent disability.

“The NDIS can’t be the only lifeboat in the ocean,” Mr Shorten said.

“What we need to do is make sure that there are other supports out there [for people] who may not need the full NDIS orchestra.”