A little over a year ago, Bonnie noticed her hair was falling out. At 30, she visited a dermatologist who asked if she had experienced any recent stress. Bonnie immediately knew the cause: the Australian government’s new legislation affecting the National Disability Insurance Scheme (NDIS). She feared it would strip her sister Claire of essential supports, leaving her vulnerable.
Claire, also in her 30s, has a degenerative condition. She relies on a wheelchair, is blind, and needs assistance with daily tasks. Despite these challenges, she runs a small business, consults on disability issues, socializes with friends, and competes in para-sports, all made possible by the one-to-one support funded through the NDIS. “We often say she should be a poster girl for the NDIS,” says Claire’s mother, Alice.
However, legislative changes introduced in October 2024 have left Claire’s family anxious about losing this vital support. Reports of other NDIS participants facing cuts or being reassessed and removed from the scheme have only heightened their fears. Bonnie’s hair loss, Alice’s emotional distress, and Claire’s father returning to full-time work reflect the family’s uncertainty about the future.
Impact of Legislative Changes
The fear experienced by Claire’s family is shared by many NDIS participants. The changes, aimed at curbing the scheme’s rising costs—projected to escalate from $44.3 billion in 2024 to over $90 billion by decade’s end—have sparked widespread concern. Participants, families, and advocates worry that the NDIS is on the brink of losing its core purpose.
The “Getting the NDIS Back on Track” bill, enacted in October 2024, introduced several changes. While some may seem minor—such as new definitions of fundable supports and caps on certain therapies—they collectively represent significant cuts. “Basically, we have really complex changes in the legislation that have enabled the NDIA to clamp down on people’s access to funding,” explains Sarah Langston, president of the Australian Neurodivergent Parents Association.
A government spokesperson defends the changes, citing a need to preserve the NDIS for future generations. They claim that without intervention, scheme expenses would have increased by $45 billion since October 2022.
Community Reaction and Expert Opinions
Over the past six months, numerous NDIS participants have reported cuts or refusals of support, including those with complex disabilities requiring 24-hour care. Some have been hospitalized or forced into group homes, while others face acute distress, considering extreme measures like assisted dying.
Dr. George Taleporos, chair of Every Australian Counts, describes the past 18 months as “a very difficult period for our community.” He highlights the rapid, complicated changes and the lack of clarity, which have eroded trust in the system. “There is growing fear in our community that our essential supports will be stripped away,” he says.
Many feel betrayed, as the changes followed a comprehensive review of the NDIS in 2023, which had raised hopes for a fairer experience. Instead, participants report increased confusion and stress.
Future Changes and Concerns
As participants grapple with current changes, the NDIA has announced further reforms for 2026. One significant shift involves how support plans are determined. The current model, based on interviews and medical evidence, will be replaced by an online tool, the Instrument for the Classification and Assessment of Support Needs (I-CAN). This tool aims to provide consistency but has raised concerns about its lack of testing across diverse groups and reduced human oversight.
Critics have labeled the new system “robo-planning,” fearing it will undermine personalized care. Dr. Kelly Gough, chair of the Australian Psychological Society, emphasizes the need for transparency. “It would be like saying: ‘Certain parts of our tax system, you just have to trust the algorithm,'” she warns.
The NDIA defends the tool, asserting that plan sizes should not depend on planners or the affordability of allied health reports. However, advocates remain skeptical, particularly about the reduction in appeal rights. The Administrative Review Tribunal will lose its ability to alter plans, leaving participants like Claire without recourse if their needs are unmet.
The Introduction of the Thriving Kids Program
Another major change in 2026 is the Thriving Kids program, which will remove children aged eight and under with mild to moderate developmental delays and autism from the NDIS. Instead, they will receive early intervention support through state-run programs. Federal Health Minister Mark Butler states the change aims to refocus the NDIS on individuals with significant, permanent needs.
While some cautiously welcome the program, others raise concerns about its implementation. Lexy Wilson, a senior speech pathologist, questions the reliance on parents to deliver therapy, warning of potential burnout. “These families are already carrying an enormous load,” she says.
The government assures that children with significant disabilities will remain eligible for the NDIS, and the Thriving Kids program will be developed in consultation with experts. However, Wilson stresses the importance of getting it right to avoid future strain on the NDIS.
The changes to the NDIS have left many participants and their families feeling uncertain and anxious about the future. As the government continues to implement reforms, the disability community remains vigilant, advocating for transparency and fairness in the evolving system.
