Submission 573
Submission to the Senate Inquiry
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
My name is and I am making this submission as a person with disability and an NDIS participant.
I want to be very clear from the beginning: the NDIS is not a luxury in my life. It is not extra. It is not about “getting things for free.” It is what allows me to participate in the world with some level of dignity, safety and independence.
A lot of the discussion around these changes feels like disabled people are being spoken about as numbers, costs or budget pressures instead of human beings. What gets lost in all of this is the reality of what life actually looks like when you live with disability every single day.
The proposed changes scare me, and they scare a lot of people in the disability community.
One of my biggest concerns is the increasing focus on “capacity” rather than diagnosis and the real-world impact that could have on people with lifelong physical disabilities.
I understand the importance of supporting people to build skills and independence where possible. But for many people with permanent physical disabilities, the reality is very different.
For people like myself, a lot of our supports are not about suddenly recovering or becoming “less disabled.” They are about maintaining function, slowing deterioration, managing pain, preserving independence and preventing secondary complications.
That distinction matters.
There seems to be a growing assumption within reform discussions that if someone is not actively improving capacity in a measurable way, then supports become harder to justify. But with many lifelong disabilities, maintaining capacity is the outcome.
If I lose access to supports such as Physiotherapy or Exercise Physiology, the result is not neutrality. My body does not simply stay the same without intervention.
Without those supports there can be:
- reduced mobility
- increased pain
- physical deterioration
- loss of strength and conditioning
- increased fatigue
- reduced independence
- higher risk of injury and secondary health complications
- increased reliance on informal supports, hospitals and the broader health system
Submission 573
For people with lifelong disabilities, allied health supports are often preventative healthcare. They help stop things from getting worse.
Cutting or reducing those supports may appear to save money within the NDIS budget short term, but it simply shifts pressure elsewhere — onto hospitals, GPs, emergency departments, carers and already overstretched health services.
I also have serious concerns about the proposed changes to how “permanence” is defined and the expectation that participants may need to try every possible treatment before being considered eligible or before supports are approved.
Disability is not always something that can simply be fixed if you try hard enough or find the right treatment. Many disabled people already spend years navigating surgeries, therapies, rehabilitation, pain management, specialists and assessments. We already live with constant pressure to prove ourselves.
The idea that people could be expected to continue chasing treatments that may be inaccessible, unaffordable, unrealistic or physically exhausting just to prove they are “disabled enough” is deeply concerning.
There is also a huge difference between a treatment technically existing and it being genuinely accessible.
This is especially important in regional areas.
Living in a regional area already means reduced access to specialists, allied health professionals, rehabilitation services and accessible infrastructure. Waitlists are longer. Travel is harder. Options are more limited. In some cases, services technically exist on paper but are not realistically accessible due to distance, cost, workforce shortages or availability.
Regional participants are already starting from a position of disadvantage.
If reforms move further toward rigid capacity-based funding models without properly understanding regional realities, people in areas like mine will be disproportionately affected.
There is also a broader issue with what the NDIS was originally intended to do.
The NDIS was created because disability support was never meant to be purely crisis-driven or based only on whether someone could prove improvement. It was designed to give people with permanent and significant disability the supports needed to live an ordinary life with dignity, participation and choice.
For many people with lifelong physical disabilities, success is not always measured through dramatic improvement.
Sometimes success is:
- staying out of hospital
- remaining independent for longer
- managing pain
- keeping mobility
Submission 573
- continuing to participate in community life
- preventing further decline That still matters.
I worry that moving too heavily toward a capacity-focused system fundamentally misunderstands the reality of lifelong disability. It risks creating a model where people only receive enough support once they have already deteriorated or if they can prove they have capacity.
By then, the damage is often much harder, more expensive and sometimes impossible to reverse.
What also concerns me is the emotional toll these changes are already having on people. The constant fear, uncertainty and confusion is real. Many disabled people already live with significant stress trying to navigate the NDIS. Every new reform announcement creates another wave of anxiety about whether supports will disappear, whether people will need to fight even harder to prove their needs, and whether the system still sees them as worthy of support.
I do not believe these changes have been explained clearly enough to participants. Many people still do not fully understand what the long-term impacts may be, and that uncertainty creates fear.
I also think there is a broader issue with how disability is viewed socially and politically. Too often support is framed as a burden instead of recognising that accessibility and support are what allow people to contribute, participate and live meaningful lives.
Disabled people should not have to earn humanity through productivity.
The NDIS changed lives because it recognised that disabled people deserve support to live, not just survive.
I ask the Committee to genuinely listen to disabled people and the lived reality behind these submissions. Please do not reduce people’s lives to financial modelling.
The decisions made here will affect real people, real families and real futures.
For many of us, this is not political debate.
It is our lives.