A little over a year ago, Bonnie’s hair started falling out. The then 30-year-old went to see a dermatologist, who asked if something stressful had happened in her life recently. Bonnie knew instantly what it was.
The Australian government had passed new legislation related to the national disability insurance scheme (NDIS) and she was terrified it would strip her sister Claire* of the essential supports that enabled her to live a beautiful and rich life.
Without those supports, Bonnie feared Claire would be “left to rot” in a group home.
Claire, also in her 30s, has a degenerative condition. She uses a wheelchair, is blind and needs assistance with many tasks, including toileting, dressing, moving in and out of her chair, and with some communication.
Claire also runs a small business, consults on disability issues, regularly socialises with friends and competes in para-sports – much of which is made possible through the one-to-one support she receives from a carer, funded via the NDIS.
“We often say she should be a poster girl for the NDIS,” says Claire’s mother, Alice*.
But when legislative changes to the scheme were introduced in October 2024, the family became terrified that this one-to-one support, and all it enables, would be taken away.
In the months since, as they’ve seen reports of NDIS participants having their plans cut, or in some cases being reassessed and removed from the NDIS entirely, their anxiety has grown.
Bonnie’s hair started falling out, Alice stopped being able to talk about the future without crying, and Claire’s 70-year-old father went back to work full-time, “because we don’t know what’s going to happen and we just can’t trust that the support will be there any more,” Bonnie says.
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It’s a fear shared by many NDIS participants who have been left reeling from a suite of legislative changes designed to curb the cost to the budget of the NDIS – which has been projected to rise from $44.3bn in 2024 to more than $90bn by the end of the decade.
And it’s just the beginning. The most significant changes in the history of the NDIS are set to be introduced over the next 12 months. Participants, their families, allied health professionals, disability advocates, and lawyers have told Guardian Australia that the NDIS is on a precipice, facing dramatic changes to its entire setup that could threaten its very purpose.
“We’re just completely terrified about how this is all going to go,” Bonnie says. “It’s just this overwhelming sense of doom.”
What changed?
Participants have been experiencing changes to the NDIS at breakneck speed since the legislation, titled the Getting the NDIS Back on Track bill, commenced in October 2024.
Many of these changes are, on the face of it, small and undramatic: new definitions of the supports that can be funded, funding caps for certain therapies and limits on travel costs for allied health workers, the implementation of “funding periods” which mean funding can only be spent in a particular time period, among other things.
“Basically, we have really complex changes in the legislation … that has enabled the NDIA to clamp down on people’s access to funding in a lot of ways that all add up to one big cut,” Sarah Langston, the president of the Australian Neurodivergent Parents Association, told the Guardian late last year.
A government spokesperson says the changes are necessary to preserve the NDIS for future generations, telling Guardian Australia in a statement that after “a decade of neglect” under the former government “costs ballooned out of control”.
“Since October 2022, the NDIS Actuary projected that without Labor’s action, scheme expenses would have increased by $45bn,” they say.
Over the past six months, Guardian Australia has been contacted by dozens of NDIS participants who have had their support cut or refused in the last year, including those with complex permanent disabilities who require 24-hour care.
Some say the changes have forced them to be hospitalised, or have led to regressions in their capacity; some fear they will be forced out of independent living into a group home or aged care facility. Others have said the changes have led to such acute distress that they are considering suicide or assisted dying.
Dr George Taleporos, the independent chair of Every Australian Counts and a leading disability advocate, says the past 18 months have been “a very difficult period for our community”.
“Complicated changes that make our lives harder are happening faster than they can be understood, with very little notice or explanation,” he says. “There is growing fear in our community that our essential supports will be stripped away.”
For many, the fear has been made worse by a feeling of betrayal. Many of the changes followed a wholesale review of the NDIS, which was handed down in 2023 – a review that Taleporos says “raised expectations that participants would have a better and fairer experience”.
“But our community is saying that their experiences with the NDIS have become more difficult, more confusing, and more stressful. This gap between what was promised and what people are experiencing has damaged trust and led to a higher level of fear and apprehension about what’s to come.”
‘Robo-planning’
Even as people are still wrapping their heads around these changes, the NDIA has announced two more for 2026.
The first is a dramatic shift in the way that support plans for NDIS participants are determined and the funding available to them is calculated.
Currently, this is done through an interview with an NDIA staff member, who uses that information alongside medical evidence provided by the participant to calculate a bespoke funding plan.
This model is not without its issues, with advocates saying they sometimes see dramatically different plans for people with very similar disabilities and circumstances.
The NDIA says it will introduce a new model for determining plans in response to calls for more consistency and fairness. In September, it announced it had procured an online tool called the Instrument for the Classification and Assessment of Support Needs (I-CAN), which will be rolled out from mid-2026.
However, advocates have grave concerns about the rollout of the I-CAN process, in particular concerns that it has not been tested and validated on a broad enough range of disability groups and diverse communities; that it will be used by people without allied health backgrounds; and that it drastically reduces the amount of human involvement and oversight in the determination of plans.
Advocates have slammed the new system as “robo-planning” and a “nightmare scenario” for disabled people. They have called for transparency around how the tool works, and particularly the basis for it making funding recommendations.
“I would be disturbed if that sort of information wasn’t public knowledge,” says Dr Kelly Gough, the chair of the Australian Psychological Society.
“It would be like saying: ‘Certain parts of our tax system, you just have to trust the algorithm. The algorithm decides how much tax you owe us each year. You don’t need to worry your pretty head about it, just put the numbers in and we’ll tell you.’ No one would put up with that, would they?”
A government spokesperson defends the new tool, saying: “The size of a person’s plan shouldn’t be determined by which planner they get or how much they can afford to pay for allied health reports.”
They add: “The rules and policy arrangements to support New Framework Planning are currently being developed in consultation with disability representatives and state and territory governments.”
Taleporos says advocates are “deeply concerned about” the changes.
“These assessments are expected to be carried out by agency staff without allied health qualifications, by people who don’t know us, people that we have never met,” he says. “The results are expected to be translated into budgets through computer systems that could be hard to understand and hard to challenge.”
Another part of this change, as revealed by Guardian Australia in December, is a dramatic reduction in appeal rights. The administrative review tribunal (ART) – the appeal body of last resort for NDIS participants – will no longer have the ability to alter a person’s plan and increase the amount of funding they receive, in most cases.
This change has Bonnie and Alice particularly afraid.
About five years ago, Claire got a new NDIS plan which gave her access to supported disability accommodation, meaning she would share a home and a support worker with at least two other NDIS participants – people she did not know and would have no choice in.
Her family were able, through a successful appeal to the ART, to argue that given the severity of her complex health needs, the plan was completely inappropriate and unsafe. The plan was overturned and the tribunal ruled Claire should be entitled to one-to-one 24-hour support.
“If there’s no way to appeal the outcome of the model, that’s absolutely cooked,” Bonnie says. “It’s just astounding that we’ve got here.”
A spokesperson for the NDIA says the agency: “acknowledges any period of change can be uncertain for participants and their supporters” and said they were “continuing to consult with participants, families, carers and the broader disability community to make sure the new process, including the Support Needs Assessment, works for all participants.”
Thriving Kids
The second major change coming to the NDIS in 2026 is the introduction of the Thriving Kids program, which will see children aged eight and under with “mild to moderate developmental delay and autism” removed from the scheme entirely and provided with early intervention support in other contexts, run largely through the state governments.
In August, the federal health minister, Mark Butler, said the change was about cutting the NDIS’s budget, which has increased dramatically beyond predictions, and “returning the scheme to its original purpose – its North Star – the provision of support ‘to people with significant and permanent care and support needs’.”
In February, the government announced more detail about the program, saying it would be focused on the early identification of children’s issues; building the skills of parents to assist their children; and speedy access to targeted support from trained allied health workers, including speech pathologists, occupational therapists, physiotherapists, audiologists and psychologists.
It will also be jointly funded by federal and state governments.
While some groups have cautiously welcomed the scheme, many advocates have raised concerns – including questions about which conditions will be classified under “developmental delay”; the threshold at which someone’s condition will be judged to be “mild to moderate”; and the focus on delivering services in school and childcare settings, as many kids with these disabilities are unable to participate in mainstream educational services.
“One of my strongest concerns … is the assumption that parents can, or should, take on the role of their child’s therapist through increased access to information and online programs,” says Lexy Wilson, the clinical director and senior speech pathologist at Climb Learning. Wilson has been working with children with developmental disabilities for more than 20 years.
“These families are some of the most resilient, proactive and committed people in our community, but they are already carrying an enormous load. Expecting them to deliver therapy on top of parenting risks burnout and places children’s outcomes in jeopardy.”
A government spokesperson says: “Children with permanent and significant disability – including those with developmental delay and/or autism with high support needs – will continue to be eligible for the NDIS.”
They add that access criteria for the Thriving Kids program is being developed as part of a “staged rollout” with full commencement set for 1 January 2028.
They also say the Thriving Kids Advisory Group, which includes experts from a range of fields, has recommended the program as “the best way to help parents and families build their own skills and networks and better connect with targeted services that support Australian children”.
Wilson warns of the importance of getting this right, saying that getting this change wrong will cause “so much more strain on the NDIS in 10 years’ time”.
“I understand there is a view that the NDIS is ‘broken’, but that does not mean well-established evidence-based early intervention models should be dismantled or thrown out in the name of reducing budgets. The stakes are too high.”
* Names have been changed for privacy
