The NDIS is changing, and for many participants the hardest part is not just the reform itself. It is the uncertainty. Across media interviews, advocacy statements and public submissions, a clear message is coming through: participants are worried, confused and exhausted by trying to work out what the changes will mean for their daily lives.
Officially, the NDIS has told participants that “nothing will change for now”, that they can keep using their current plans, and that current rules and planning arrangements will stay the same until after the new law is passed. But that reassurance is sitting beside announcements about new planning rules, new assessments, funding resets, changes to access, provider registration, plan management reforms and supports being moved outside the scheme. For participants, those two messages can feel hard to reconcile: “nothing changes today”, but everything might change soon.
Participants are asking: “Will I lose my support?”
One of the biggest fears participants are expressing is whether they will lose access to the NDIS, lose funding, or lose the supports that allow them to live safely and independently. ABC reporting described participants as no longer knowing what the future holds after the government announced a new suite of cost-cutting changes, including a new eligibility process and moving large numbers of people off the scheme.
For people who built their lives around the support they receive, this is deeply unsettling. Participant Robin Eames told the ABC the news made their “stomach drop” and said the NDIS had given them their life back. That reaction captures what many participants are saying: the NDIS is not an optional extra. It is often the difference between being housebound and being able to participate in ordinary life.
The confusion is made worse by shifting numbers and different timeframes. One ABC report said the changes aimed to reduce participant numbers from about 760,000 to around 600,000 by the end of the decade, while another report said officials told the Senate inquiry the changes would see more than 200,000 people removed over four years. Even when those figures refer to different periods or policy pathways, participants hear the same underlying message: some people will be moved out, but many do not know whether that includes them.
Social and community participation is not seen as “extra”
A major source of distress is the proposed reduction to social, civic and community participation supports. The Department of Health, Disability and Ageing says that from 1 October 2026, these budgets will be reset as plans are reassessed or renewed, with social, civic and community participation budget allocations reduced by 50 per cent and capacity-building daily activity budget allocations reduced by 10 per cent. The government says the changes will not necessarily mean every participant spends 50 or 10 per cent less, because some people do not use their full allocation.
That distinction is technically important, but it is also part of the confusion. Participants are trying to understand whether the announced reduction applies to their plan, when it will apply, whether it affects their actual weekly supports, and whether alternatives will be available before changes happen.
Participants are also pushing back against the idea that community participation is simply about leisure. Jarrod Sandell-Hay, an NDIS participant and People with Disability Australia vice-president, told the ABC that these supports help him get to the GP, go to work and buy food for his family. He warned that community participation should not be misunderstood as something “not frivolous”, but as part of contribution, family life and being visible in the community.
This is why the proposed changes feel personal. For many participants, social and community supports are not just about outings. They are how people work, volunteer, build confidence, maintain relationships, practise life skills and avoid isolation.
Families are worried about what replaces individual support
The government has announced a $200 million Inclusive Communities Fund to help community organisations provide genuine participation activities. The idea is to create more inclusive, lower-cost opportunities outside individual NDIS plans. But participants and families are asking a practical question: what happens if individual supports are reduced before those community alternatives actually exist?
That concern is especially strong for families of people with intellectual disability, autism, developmental delay and complex support needs. The Guardian reported on Joe Barham, a 22-year-old with Down syndrome, whose NDIS-funded programs help him learn barista skills, volunteer in a community garden and build independence. His mother described the supports as life skills, not just activities, and said if that support disappears, “everything disappears”.
For rural and regional families, the concern can be even sharper. The Guardian also reported on Felix, a teenager with Down syndrome in rural South Australia, whose family travels long distances to access programs that support his confidence, independence and wellbeing. For families like his, the question is not simply whether a community program exists somewhere. It is whether the right support exists nearby, at the right time, with workers who understand the person’s disability and communication needs.
Participants feel blamed for problems they did not create
Another theme coming through is a feeling of being punished for fraud, waste or poor provider behaviour. Participants generally understand that the scheme needs oversight and that fraud should be addressed. But many are frustrated that the solution appears to include reducing supports for people who rely on them.
ABC reported one participant saying the financial intervention felt punitive and that participants were being treated as burdens or scammers while trying to live ordinary lives. This feeling matters because trust is central to the NDIS. Participants already have to disclose personal information, prove their needs and justify supports. When public debate focuses heavily on cost, fraud and “rorts”, people with disability can feel as though their lives are being discussed as a budget problem rather than a human rights issue.
That does not mean participants oppose reform. Many advocates have said the NDIS needs to be sustainable, safe and well-regulated. But they are asking for reforms that target exploitation without making disabled people carry the burden of fixing the system.
The new planning system is still hard to understand
The NDIS says a new way of planning will begin from April 2027 and will include support needs assessments designed to create fairer and more consistent budgets. In theory, this could reduce the need for participants to constantly collect expensive reports and repeatedly prove their disability.
But participants and disability organisations say too many important details remain unclear. Disability representative organisations have warned that key information about the new planning reforms has not been released or fully explained, including how support needs assessments will be validated, how assessed need will translate into funding, whether automated or algorithmic decision-making will be used, what appeal rights will apply, and how transition safeguards will work.
That uncertainty makes it hard for participants to prepare. People do not know what evidence they will need, whether their fluctuating or invisible disability will be properly understood, whether informal family support will be assumed, or how they can challenge a decision if the assessment misses something important.
Consultation has become part of the problem
Participants are also saying they have not had enough time, accessible information or meaningful opportunity to respond. The Senate inquiry into the Bill received more than 4,000 public submissions in just over a fortnight, which shows how urgently people wanted to be heard.
Disability representative organisations told the Senate inquiry that many people with disability, their families and representative organisations had not had a reasonable opportunity to understand or respond to the proposed changes, and that the process was particularly inaccessible for people most likely to be affected.
This is one of the clearest reasons for the confusion. Participants are not confused because they are not paying attention. They are confused because the reforms are complex, the timelines are staggered, some details are still being designed, and accessible explanations have not always been available early enough.
The bottom line: people want reform, but they want certainty
What participants are saying is not simply “don’t change anything”. Many people know the NDIS can be difficult, inconsistent and unfair. Many have experienced confusing planning meetings, sudden cuts, poor communication, thin markets, unsafe providers or long battles for basic supports.
But participants are asking for reform to be done with them, not to them. They want to know whether their current supports are safe, when changes will apply, what evidence they will need, how assessments will work, what happens if they are moved out of the scheme, and whether alternative supports will be ready before NDIS funding is reduced.
The confusion is not a side issue. It is part of the impact of the reform. When people depend on support to shower, work, communicate, leave the house, build skills or stay connected, uncertainty is not just administrative stress. It affects health, family life, employment, safety and dignity.
The NDIS was built on the promise of choice, control and inclusion. Participants are now asking whether that promise will survive the reforms. The answer will depend not only on what the final law says, but on whether people with disability are given clear information, real consultation, strong safeguards and enough time to prepare.
References
National Disability Insurance Agency. Federal Budget and NDIS laws update.
National Disability Insurance Agency. Changes to the NDIS.
National Disability Insurance Agency. What are NDIS supports?
Australian Government Department of Health, Disability and Ageing. About the changes to the NDIS.
ABC News. NDIS cuts leave participants concerned about what lies ahead.
ABC News. Disability community ‘scared’ by dramatic NDIS changes as government defends overhaul.
ABC News. Disability advocates welcome extension after ‘ridiculous and disrespectful’ NDIS inquiry.
The Guardian. The NDIS has given Joe vital social skills. Funding cuts leave his mother fearing how he will ‘do life’.
Disability Advocacy Network Australia. Joint Statement: Disability Representative Organisations call for clear and complete consultation on NDIS planning reforms.
Disability Representative Organisations. Joint Submission to the Community Affairs Legislation Committee on the NDIS Amendment Bill 2026.