The NSW government is overhauling eligibility rules to rein in spending. Kindergarten student Zoe, 6, who has autism, could have her plan cut under the new reforms. Picture supplied

Families are bracing for a period of profound uncertainty as the state and federal governments roll out sweeping reforms to the National Disability Insurance Scheme (NDIS), shifting the goalposts for eligibility and sparking fears that thousands of children will be left without essential support.

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The overhaul, aimed at curbing the scheme's growth from 10 per cent to two per cent across the next four years, will see a move away from diagnosis-based entry in favour of functional capacity assessments by 2028.

For parents like Menai mother Skye Bryant, whose six-year-old daughter Zoe relies on the scheme to navigate life with level two autism and a severe sensory processing disorder, the changes feel like a looming threat to her child's development.

"Zoe has autism level two. She's got a paediatric feeding condition and has difficulty with sensory processing," Ms Bryant said.

Having been on the NDIS for three years, Zoe's access to weekly occupational, speech, and feeding therapy has been life-changing, but recent budget cuts have already forced a scale-back to fortnightly sessions. The impact was immediate. "I've already noticed a difference... She's been completely unregulated since. I've noticed it in her speech," Ms Bryant said, adding that even basic services like the assistance bus to her school's support unit have become a source of distress for her daughter.

The federal government remains firm that the trajectory of the NDIS is unsustainable. Health and Disability Minister Mark Butler defended the reforms, stating that the scheme "costs too much, and it's growing too fast." He warned that unless action it taken to make it sustainable, it simply will not be there in the future for the Australians who need it most.

Legislation slated for May will formalise the government's plan to reduce the number of participants from 760,000 to about 600,000 by the end of the decade. The shift to functional capacity assessments is intended to prioritise those with the most severe needs, but Ms Bryant said the process is already an exhausting, uphill battle for parents.

"You have to have all your ducks in a row, prepare evidence, jump through lots of hoops to get the assessment done. It's extremely difficult," she said. Despite preparing a 25-page document and using NDIS funds to pay for a private functional assessment, her claims were still knocked back. "Mark Butler keeps talking about functional capacity assessment-I have one. What I don't understand is that... they don't give you funding to have one, so I had to take money from her NDIS funding to pay for that." The lack of clarity surrounding the new criteria has left her family in limbo. "Can't they give us more information? Then there would be less anxiety about it," she said. "They keep saying kids with high support needs will stay on it and I hope she does."

The reforms will hit the autistic community hardest, as they represent the largest cohort on the scheme. Children aged eight and under, like Zoe, are expected to be transitioned off the NDIS and onto the "Thriving Kids" program, which is still under development. While the government points to a new $200 million Inclusive Communities Fund as a way to bolster support outside the NDIS, parents worry about the loss of specialised care. Ms Bryant said her therapist even suggested shortening Zoe's sessions to half an hour simply to "prove" the necessity of the full hour. "We're lucky to have found a good therapist Zoe trusts and likes," she said. "To go on the waitlist for another would not be good for her."

While NDIS participants face a tightening of resources, the NSW government highlighted a different area of reform as a success story: ADHD medication access. Under new landmark changes, nearly 10,000 people have avoided specialist wait times by accessing repeat prescriptions through their GPs. NSW Premier Chris Minns framed the move as a cost-of-living win, noting it is "putting money back in people's pockets," while Health Minister Ryan Park said the health system's capacity to support ADHD "continues to go from strength to strength." RACGP NSW Chair Dr Rebekah Hoffman, who is also a Sutherland Shire GP, supported the move, stating that trusting GPs to deliver care has "reduced costs for families" and "eased pressure on an overstretched specialist system."

Ms Bryant has recently taken her concerns to Sutherland MP David Moncieff, seeking help as the October deadline for cuts to social and community participation budgets approaches. "I've done all the research," she said. "How else can I prove this?"