To: Community Affairs Legislation Committee
Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill
2026
Dear Committee Members,
I am writing as the parent of a young autistic person to express my deep concern about the proposed changes in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. For families like ours, this Bill is not about abstract reform. It is about whether our children will continue to receive the supports that make it possible for them to live with dignity, participate in the community, and build a future.
Public information about the Bill indicates that it would make significant changes to eligibility, planning, reassessment, and the level of supports that may be funded through the NDIS.
For our family, this is not an abstract policy debate. These changes will shape whether our son can keep the support that allows him to learn, take part in the community, and hold onto the possibility of a safe, dignified, and meaningful future. Without that support, the life he is working so hard to build becomes far more fragile, and the opportunities many people take for granted begin to slip further out of reach.
Our son has Level 2 autism. He requires a support worker to access the community and attend TAFE, and he also needs fortnightly speech pathology and occupational therapy.
These supports are fundamental to his communication, regulation, independence, and participation. Without them, his world shrinks quickly — not just in practical terms, but in confidence, connection, and hope.
I understand that the Government is seeking to respond to serious problems within the Scheme. There have been longstanding concerns about fraud, overcharging, and exploitation in parts of the NDIS market, and recent reform packages have been framed around strengthening fraud controls, provider regulation, and governance.
However, from the perspective of families like ours, it feels as though the pendulum has now swung too far the other way. After years in which some providers were allowed to exploit weaknesses in the system, the response now appears to be sweeping changes that may take support away from the very people the Scheme was created to protect. Families who have done nothing wrong are being left to fear that the price of fixing the system will be paid by those least able to bear it.
One of my greatest concerns is the proposed move away from diagnosis-based access towards a functional-capacity assessment model. Public material on the Bill states that access would increasingly be based on substantially reduced functional capacity using a more standardised assessment framework.
My concern is that these assessments may not properly capture how disability affects a person in real life, particularly if they focus on what a person can do in isolation rather than what they can sustain day to day in the real world.
That is exactly what worries me for our son. If you observed him briefly, or only in a supported environment, you might conclude that he is coping better than he really is.
The reality is that his ability to attend TAFE, access the community, communicate effectively, and regulate himself depends on support being consistently available. If “capacity” is assessed without properly recognising the role of support workers, therapy, and structure, there is a real risk of profoundly misunderstanding his needs and stripping away the very supports that make participation possible.
I am also very concerned about the tighter rules proposed around reassessments and support determinations. The Department’s fact sheet states that unscheduled plan reassessments would be limited, supports must arise directly from eligible impairments, and the Minister would be able to make determinations to reduce funding for groups of supports, including social, civic, and community participation and capacity-building daily activities.
The Office of Impact Analysis likewise states that the preferred reform option includes changes both to eligibility and to the volume of supports funded by the NDIS. For families, that means living with the ongoing fear that the supports our children rely on today may not still be there tomorrow.
That uncertainty is especially harmful for autistic people. Autistic Australians already face serious barriers to employment, including disproportionately high rates of unemployment and underemployment. In that context, reducing support for education, community access, and capacity-building does not simply save money — it risks closing doors that are already only barely open.
If we strip away the supports that help autistic young people study, travel, build confidence, and participate, we do not create independence. We push it further away.
I also want to state clearly that our son’s current funding is already inadequate. Even now, we supplement his supports ourselves. We take him to appointments, take him to activities, and fill the gaps because otherwise he would simply go without.
We do this because we are his family and we love him, but it should not be assumed that families can endlessly absorb what the system does not fund. Many families are already at breaking point, quietly carrying more than they can sustain because the alternative is watching someone they love miss out.
Our family is also part of the sandwich generation. In addition to supporting our son, my wife and I are helping to care for elderly parents who need assistance, transport to appointments, and help navigating the growing barriers to receiving appropriate care and funding. We are both working full time while trying to meet these responsibilities and continue contributing through our work and taxation. The strain is constant and cumulative. We are doing all that we can, but families cannot continue to absorb more and more care because formal supports
are being reduced, delayed, or made harder to access. The cost of these gaps is carried in exhaustion, stress, and the quiet sacrifice of families already stretched to their limits.
I am deeply worried about the impact these reforms could have on access to speech pathology and occupational therapy. For our son, fortnightly speech pathology and occupational therapy are not optional. They support his communication, daily living skills, sensory regulation, and ability to engage with study and community life.
If access to therapy is reduced, delayed, or made harder to sustain, the result is unlikely to be less need — it is more likely to be regression, distress, loss of confidence, and greater dependence over time.
Another issue I ask the Committee to consider is the assumption that support can simply be shifted elsewhere. Public information about the reforms makes clear that governments are developing “foundational supports” and relying more heavily on service systems outside the NDIS.
However, many disability advocates have warned that removing support before alternatives are demonstrably working simply displaces risk onto people with disability, families, and already strained systems. That reflects our experience as well.
Other funding streams are substantially inadequate for people with lifelong disability. They are patchy, limited, difficult to access, and nowhere near enough to replace individualised NDIS support for someone with enduring and significant needs. In practice, when governments say support will sit somewhere else, families often hear that the burden will once again be pushed back onto us.
I also note that previous reform evaluation found participants were already experiencing confusion, uncertainty, and anxiety under recent legislative changes. Families like ours are already dealing with complex paperwork, changing rules, provider shortages, and constant advocacy simply to maintain basic supports.
More reassessment, fewer safeguards, and reduced flexibility do not make the Scheme fairer from where we stand. They make life more uncertain, more exhausting, and more precarious for the people who depend on it most.
I understand the need for the NDIS to be sustainable. But sustainability cannot come at the expense of the people it was designed to support. A young person with Level 2 autism who needs support to attend TAFE, participate in the community, and continue regular speech pathology and occupational therapy is exactly the kind of person the NDIS was created for and should continue to stand behind.
These supports are reasonable, necessary, and practical. They are the difference between progress and regression, participation and isolation, hope and withdrawal.
I ask the Committee to consider the lived impact of these reforms on families like ours and, in particular, to ensure that:
eligibility assessments reflect real-world functioning, including the role of support and environment, rather than unsupported performance in an artificial setting existing participants are not subjected to destabilising reassessment and funding cuts that undermine continuity of care community participation, education-related supports, and capacity-building supports are protected access to allied health, including speech pathology and occupational therapy, is maintained in a way that is realistic and sustainable no-one is pushed into mainstream or foundational systems unless those systems are fully funded, accessible, and demonstrably working for people with lifelong disability.
Thank you for considering this submission. I urge the Committee to ensure that any reform to the NDIS does not punish the people who have done nothing wrong and does not make life harder for autistic young people who already face substantial barriers to independence, education, and employment. Reform should not take away the supports that make dignity, participation, and possibility real.
Yours sincerely,