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Aidyn is eight. For anyone who doesn’t know him well, his speech is impossible to understand. He has level two autism, an intellectual disability and an eating disorder. Two years ago, he had a gastrostomy tube inserted into his stomach because he was malnourished.

His coordinator and advocate, Jayde Parker, notified the national disability insurance scheme of a change in the family’s circumstances and asked for support for Aidyn’s mother, who also has autism.

“Up until then, they had support coordination, an OT, physio, a dietitian and a feeding therapist,” says Parker, who has been granted permission by the family to speak on their behalf.

“And they also had a nurse to come in once a month.

“Then [the government] took away everything – they completely cut therapy funding [down] to seven hours of a dietitian in a year.

“When Aidyn needed it the most, they just kicked him off.”

Last week, the health minister, Mark Butler, announced that about 160,000 people are expected to be removed from the NDIS by 2030, as part of a massive overhaul to curb ballooning costs. The government says the overhaul is vital to preserve the long-term viability of the NDIS.

But families and advocates say their plans are already being cut or rejected and they are being told to wait to get support from the new national foundational program Thriving Kids.

As families struggle to get the right level of support from the NDIS, they’re finding no other alternatives to help them, and worry the replacement programs will fall short.

People who no longer meet the as-yet-unannounced eligibility requirements for the NDIS will be redirected to programs such as Thriving Kids, co-run by the states and territories. Thriving Kids is designed to remove children with mild autism and other developmental conditions from the NDIS, and is expected to be fully set up by 2028.

Parker spent two years fighting the decision about Aidyn’s care, finally winning in the administrative review tribunal at the beginning of this year. Six weeks ago, about $120,000 was put back into Aidyn’s plan, but while the case was being reviewed, in October the National Disability Insurance Agency (NDIA) told Aidyn’s mother to wait for Thriving Kids, says Parker.

She says it felt as if the NDIA wanted to block Aidyn from the scheme.

“[This was all] because Thriving Kids would take over,” Parker says.

People with autism are the fastest-growing cohort of the NDIS, making up 42% of the entire scheme. The majority (66%) of autistic participants who were given access to the scheme in the quarter ending in December 2025 were under 14.

Data compiled by the Australian Neurodivergent Parents Association shows that children with developmental delay are being removed from the NDIS faster than they are being let in.

Exits have risen sharply each calendar year – 7,270 in the year ending December 2023, 19,412 in 2024 and 40,900 in the year ending December 2025.

The quarterly data on developmental delay, which includes children aged up to seven, shows the number of participants grew from 56,811 on 21 December 2022 to a peak of 88,112 in March 2025, followed by three straight quarters of acceleration in the opposite direction, ending at 70,602 by December 2025.

The Australian Neurodivergent Parents Association president, Sarah Langston, says nearly 12,000 children with developmental delays have been removed from individualised support before the replacement system kicks in.

“What we have seen is that since the end of 2024, about 29,000 participants have either partially or totally lost access to NDIS supports,” Langston says.

“A big chunk of those are kids. And in terms of the kids, what has been happening is what other advocates and I would call constructive removal from the scheme.

“That’s where a child would remain eligible, they remain in name on the NDIS, but their plan is gutted. So their support is just absolutely decimated. That’s the majority of what we’re seeing.”

A spokesperson for the NDIA would not comment on why there had been a decrease in the number of children but said there had been no “changes to the access criteria for children or how eligibility is assessed”.

“It is important to note eligibility reassessments for children who have entered the scheme under the age of 9 has always been a part of the NDIS. These assessments help us understand if the child’s support needs have changed and whether they still meet the eligibility criteria for the Scheme,” the spokesperson said.

Right now, there are a lot of questions from advocacy groups about what Thriving Kids will look like, and how much care Australia’s disabled children will get in the new model.

Asked on Thursday about the changes to the NDIS, including reducing eligibility and requiring the states to contribute more through foundational supports, the New South Wales premier, Chris Minns, said he wasn’t “like some other state leaders, hammering them for making the changes”.

“I understand that it needs to be as best as possible [and] an affordable program, but we’ve also got to be honest with people. If they’re not going to be provided with NDIS support, we can’t provide equivalent care in the state system.”

Skye Bryant lives in the Sutherland Shire with her five-year-old daughter, who has level two autism, a feeding condition and extreme sensory processing challenges, and has been on the NDIS for three years. But when Bryant notified the scheme of a change in her daughter’s circumstances after her daughter refused to take the assisted bus to daycare, most of her plan was stripped.

“We were left without appropriate transport support for 10 weeks, forcing [us to take] a three-hour daily public transport journey just to get her to the school support unit,” Bryant says.

Bryant went to her local MP, who helped get them on to a new plan, but $12,000 had been removed from her therapy funding in order to provide only 45 minutes per day of support.

Bryant went to her local MP, but $12,000 was cut from her funding, and she now only gets support for 45 minutes a day.

“I believe this reflects a broader problem many families are facing,” she says. “Having to trade essential therapies just to access basic supports like getting to school.”

Langston says the issue families face is that the new supports are often wildly inappropriate or, like Thriving Kids, don’t exist yet.

“It’s a bit of a fantasy,” she says.