Families Fear Financial Ruin as Labor Cuts NDIS Lifeline for Autism Support
Hollie-Ann Newman, a disability advocate with autism herself, sits in her Albury home, her voice soft with concern. Her four-year-old son, diagnosed with level two autism, relies heavily on the National Disability Insurance Scheme (NDIS) for daily support. This includes occupational therapy for emotional regulation, speech therapy for communication, and a behavioural support worker.
"A neurotypical child of his age would be able to dress themselves, feed themselves, dry themselves, clothe themselves, all those things," Newman explains. "But he requires substantial support to do all those things. Toileting as well, he needs assistance to go to sleep." Although her son excels in year-two maths, outings require careful planning with verbal and visual warnings for any environmental changes.
Potential Removal from NDIS Sparks Anxiety
Newman fears the complete removal of her son from the NDIS, a scenario that could leave her family isolated. "It would mean that we’d be on our own. We have no informal supports," she says. "It would mean $30 to $40,000 that we would have to find to support him out of pocket, or private providers." This financial burden looms large as the federal government announces sweeping changes to the scheme.
Health Minister Mark Butler recently revealed that approximately 160,000 people are expected to be removed from the NDIS by 2030. The $50 billion scheme's growth rate will be reduced to just 2% annually until 2030, aiming to curb inflation and generate billions in savings. Eligibility rules will be tightened, particularly for children under 18, leading to widespread confusion among participants.
Confusion Over New Eligibility and Support Systems
"We don’t know what this means," Newman admits, echoing the sentiments of many families. The lack of detailed information about the new system, including eligibility criteria and how it will impact children and adults with autism, has created uncertainty. Newman criticises the government for not taking responsibility, instead pushing the issue onto states and territories.
Those deemed ineligible under the new rules will be redirected to foundational support programs, such as the Thriving Kids initiative, co-run by states and territories. Designed to remove children with mild autism and other developmental conditions from the NDIS, Thriving Kids is expected to be fully operational by 2028. However, a recent Grattan Institute report argues that this program "does not go nearly far enough" in addressing gaps in support.
Patchy Services and Broader Impacts
Currently, children with developmental delay or autism constitute almost half of the NDIS's 760,000 participants, with about 170,000 receiving early intervention support in 2025. Sam Bennett, lead author and Grattan Institute disability program director, highlights the inequities in the current system. "If you have psychosocial needs but you’ve been deemed ineligible for the NDIS, your access to support is a postcode lottery," Bennett states. "The services you can get are patchy and underfunded – or nonexistent."
Niti Prakash, who runs a disability consultancy in Queensland, shares similar concerns. Her 12-year-old daughter, with bilateral hearing loss, ADHD, and developmental delays, has benefited immensely from the NDIS, learning to walk and talk. Prakash suggests means-testing the scheme rather than cutting people off, noting disparities in average payments across regions.
Personal Stories Highlight the Stakes
In Ipswich, 21-year-old Gemma Jensen worries about her future after hearing Butler's announcement. The NDIS funds her therapy and a support person, enabling her to study full-time while living with her parents. She aspires to move out and secure employment, relying on the scheme for independence. "I worry what my future will be. Will I be stuck in my parents’ house for the rest of my life?" Jensen questions. "I feel like myself and other people with autism and ADHD are being punished for needing extra help."
At the National Press Club in Canberra, Butler defended the changes as "hard decisions" necessary for sustainability. "The NDIS costs too much and is growing too fast," he asserted. "Unless we take action to make it sustainable, it simply will not be there in the future for the Australians who need it most." This follows revelations of a razor gang taskforce, led by former Treasury official Anthea Long, established to drive budget savings in the NDIS after a national cabinet meeting.
As families like the Newmans brace for potential cuts, the debate over balancing fiscal responsibility with essential disability support continues, leaving many uncertain about their financial and emotional futures.
