Submission 1393

Introduction

I am submitting this document as an NDIS participant with a complex disability, and as an Australian citizen with a direct and personal stake in the outcome of this Bill. I am not a policy expert or a legal professional. I am a person whose life has been fundamentally shaped by access to the NDIS, and I am writing because I believe that lived experience must be part of this parliamentary process, particularly when the legislation before you has the potential to cause profound and irreversible harm to people like me. I ask that this submission be read in full, and that the human reality it represents be given genuine weight in the committee’s deliberations.

What the NDIS Means to Me Right Now

Before I accessed the NDIS, I barely left the house. My complex disability had reduced my world to four walls. I was isolated, disconnected from my community, and unable to participate in society in any meaningful way. I had no pathway into employment, no avenue for connection, and no realistic prospect of contributing to the community around me.

The NDIS changed that entirely.

Right now, today, the NDIS is what makes my daily life possible. It funds the supports that allow me to get out of bed with purpose, to manage the practical realities of living with a complex disability, and to show up in the world in a way that would simply not be possible without assistance. My supports are not luxuries or extras. They are the infrastructure of my life. They are what stands between me and four walls.

With access to those supports, I have been able to rejoin my community. I have secured part-time employment. I am currently completing a Bachelor of Human Services online, studying from home around my disability, with the goal of entering the disability sector and dedicating my professional life to supporting others the way I have been supported.

I want to be clear about what this represents. This is not a story of dependency. This is a story of contribution. The NDIS has not created a burden on Australian society. It has enabled a citizen to participate in it. It has produced a taxpayer, a student, a future worker in a sector facing critical shortages, and a person who is, for the first time in her life, genuinely integrated into the community she calls home. That is what the scheme was designed to do. It is working.

How I Feel About the Proposed Changes

I am frightened. I want to say that plainly and without qualification, because I think it is important that this committee understands the emotional reality behind the policy language.

Submission 1393

The proposed changes to the NDIS Act are not, for me, an abstract matter of legislative design. They represent a direct threat to the life I have built. I have read the available public materials, followed the ministerial statements, and attempted to understand what this Bill will mean for me specifically. And weeks after the announcement, I remain genuinely uncertain about my future under the proposed framework. That uncertainty is not a minor administrative inconvenience. For a person with a complex disability who depends on funded supports to function in daily life, it is a source of profound and daily psychological distress.

I do not feel these changes have been explained clearly enough, and I address that concern in detail below.

Concerns Regarding the Bill

1. Inadequate explanation of the proposed changes

I wish to place on record that I do not feel the proposed changes contained in this Bill have been adequately explained to participants or to the broader public. The announcement made at the National Press Club on 22 April 2026 was significant in its scope and implications, and yet the information provided to participants about what the changes will mean in practical terms for their individual plans, their eligibility, and their day-to-day lives has been deeply insufficient.

Participants deserve clear, plain-language, individualised communication about how these changes will affect them. A parliamentary process that moves at the pace currently proposed, with legislation intended to pass by 30 June 2026, does not allow adequate time for that communication to occur, nor for the disability community to meaningfully engage with and respond to what is being proposed. This is not a reasonable timeline for changes of this magnitude to the lives of some of Australia’s most vulnerable citizens.

2. The proposed changes to the definition of permanence

One of the most troubling aspects of this Bill is the proposed change to how the NDIA defines permanence in relation to disability. Under the current framework, a person’s disability is considered permanent if it is likely to be lifelong.

Under the proposed changes, participants could be required to first attempt all available treatments before being considered eligible for the scheme.

Critically, a treatment may be deemed available even if it is unaffordable, or even if it is not accessible in the participant’s geographic area.

I want to be direct about what this means for people like me.

Submission 1393

My disability is complex. The suggestion that I, or anyone in a similar position, should be required to exhaust treatments that may be financially out of reach or simply not available where I live before being considered genuinely eligible for support is deeply unjust. It places the burden of proof on the person who is already living with the disability, already navigating a system that is difficult to access, and already managing the daily realities of a life that is more complicated and more costly than most.

This change does not reflect the reality of complex disability. It reflects a bureaucratic desire to reduce eligibility numbers. And it will cause real harm to real people, including people who have been participants for years and who will suddenly find their eligibility questioned on grounds they cannot practically satisfy.

The committee must scrutinise this change with great care. The definition of permanence is not a technical detail. It is the threshold at which a person is recognised as deserving of support.

Getting it wrong will exclude people who have nowhere else to turn.

3. The replacement systems do not yet exist

The central justification offered for the changes in this Bill is that participants who are moved off the scheme, or who have their funding reduced, will be supported by alternative community-based and foundational supports. I want to state clearly and for the record: those systems do not currently exist in any meaningful, funded, or accessible form.

The government has acknowledged this itself. And yet the proposed timeline would see reductions to participant supports begin as early as 1 July 2026. This is not a transition. This is the removal of a bridge before the next one has been built. For participants who depend on their current supports to get through each day, the gap between what is being taken away and what is being promised in its place is not a policy detail. It is the difference between a life with dignity and a life without one.

I do support the establishment of the Inclusive Communities Fund in principle. Investment in accessible, inclusive community infrastructure is genuinely welcome. But a future fund cannot substitute for a present support. The committee should not pass legislation that removes funded supports from participants until it can point to a specific, funded, accessible, and operational alternative for each category of support being reduced.

4. Fiscal justifications must be scrutinised

I wish to address directly the fiscal framing that has underpinned the public case for this Bill. The government has characterised the NDIS as growing unsustainably and has suggested these changes are necessary to protect the scheme’s long-term viability. I accept that long-term sustainability is a legitimate policy concern. I want the NDIS to run for generations to come.

Submission 1393

However, I do not accept that disabled Australians are the appropriate group to bear the primary burden of fiscal repair. I respectfully urge the committee to examine whether the burden of sustainability has been distributed fairly, and whether the choices made in this Bill reflect the values this parliament claims to hold regarding the rights and dignity of disabled Australians.

5. What these changes would mean for me, my community, and the people around me

The impact of these proposed changes would not be mine alone to bear. Disability does not exist in isolation, and neither does the loss of support.

The people in my life, including those who care about me and those who have watched me rebuild a meaningful existence and flourish over the course of my time on the Scheme, would bear witness to my regression. The informal care burden that would fall on the people closest to me if my formal supports were reduced would be significant. People who love someone with a complex disability do not simply watch that person struggle. They step in, often at great personal cost, absorbing responsibilities that formal supports currently manage. The reduction of my funded supports would not affect only me. It would ripple outward into the lives of those around me.

Beyond my personal circle, I am part of a broader disability community, a community that is already frightened, already feeling the weight of uncertainty, and already losing trust in a scheme that was built on a promise of dignity and choice. The damage being done to that community by this announcement, before a single change has even been legislated, is real and it is significant.

6. What would happen if my social and community participation supports were reduced or removed

If my social and community participation supports were reduced or removed, I would lose my connection to the world outside my home. This is not a metaphor. Before the NDIS, I did not have that connection. I lived a life of profound isolation, unable to engage with my community, unable to access employment, and unable to build the relationships and routines that most Australians take for granted.

My social and community participation supports are what allow me to leave the house, to engage with others, to maintain the community connections that sustain my mental health and sense of self, and to participate in the employment and study that give my life direction and purpose.

Without them, I would return to isolation. I would return to a life that is smaller, more painful, and more degrading than the one I am living now. I would lose the part-time employment I currently hold. I would lose the ability to engage meaningfully with my degree. I would lose the community I have worked so hard to become part of.

Submission 1393

That is not a risk. That is a certainty. I know this because I have lived it.

7. What would happen if my capacity building supports were reduced or removed

My capacity building supports are what have made growth possible. They are not simply supports that maintain my current level of functioning. They are the mechanism through which I have been able to develop real and lasting capability over time. Critically, capacity building has meant access to vital therapies that have genuinely changed what I am able to do in the world. Those therapies have addressed barriers that I could not have overcome alone, and they have made it possible for me to join the world in a way I previously could not. They have made it possible for me to work, to study, to connect, and to live a life that has meaning and direction. To take that away would be terrifying. Not because I have become complacent or dependent, but because I know precisely what my life looked like before those therapies were part of it.

If I had never had access to capacity building supports in the first place, the life I am describing in this submission would not exist. I would still be in the house. I would still be invisible. I would still be a person with no realistic pathway into employment, education, or community participation.

Capacity building is not an optional extra for people with complex disabilities. It is the mechanism by which the NDIS fulfils its foundational promise: not just to support people as they are, but to invest in who they can become. To reduce or remove capacity building supports is to abandon that promise entirely.

What Would Happen if I Lost Access to the NDIS

I am genuinely frightened of returning to the life I had before the NDIS. Not in a vague or theoretical sense, but in the immediate, physical, daily sense of a person who knows precisely what that life looked like and is terrified of returning to it. I was cut off from society. I was unable to make a meaningful contribution with my life. I existed within four walls, disconnected from community, from purpose, and from any realistic sense of a future.

The thought of returning to that life is not something I can approach calmly, because it is not a calm prospect. It is a prospect of profound loss, suffering, and regression. And I know that I am not alone. The disability community across Australia is frightened. People who have worked hard to build lives with independence and connection are lying awake at night wondering whether those lives will be taken from them.

This Bill, as currently drafted and on its current timeline, risks causing that harm. I urge the committee not to let it.

Submission 1393

I ask the committee to consider the following recommendations:

• That the passage of the Bill be delayed until comprehensive, plain-language information has been provided to all current participants about the specific impact of the proposed changes on their individual plans and eligibility.

• That the proposed changes to the definition of permanence be withdrawn or substantially revised, and that any revised definition be developed in genuine consultation with participants, disability advocates, and medical and allied health professionals.

• That no reductions to participant supports be legislated to take effect until funded, accessible, and operational alternative supports are demonstrably in place for every category of support being reduced.

• That the committee receive substantive evidence from a representative cross-section of current NDIS participants about the real and lived impact of the proposed changes before completing its deliberations.

• That the principle of “nothing about us, without us” be treated not as a slogan but as a binding standard for how this legislation is developed, amended, and implemented.

Conclusion

The NDIS gave me back my life. It gave me community, employment, education, and a future I am working toward with genuine purpose and hope. I am a better, more connected, more contributing member of Australian society because this scheme exists.

I am asking this parliament not to take that away.

I am asking you to slow down, to listen, to consult genuinely, and to ensure that no person with a disability in this country loses a support before something real and accessible exists to replace it.

The scheme must be sustainable. But sustainability cannot come at the cost of people’s independence, dignity, and lives.

I am willing to appear before the committee if that would be of assistance.

Yours respectfully,

NDIS Participant Constituent, , Queensland

Submission 1393

28 May 2026