Senate Inquiry: NDIS Future Generations Bill 2026

To the Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 Via Email: community.affairs.sen@aph.gov.au

Submission to the Senate Inquiry: NDIS Future Generations Bill 2026

1. Introduction

Thank you for the opportunity to make a submission to the Senate Inquiry on the NDIS Future Generations Bill.

My name is , and I reside in Northern NSW, a regional/rural area. I am writing as an NDIS participant living with severe Complex Post-Traumatic Stress Disorder (CPTSD), depression, and anxiety. I also manage, as do many disabled people, a number of other complex illnesses, which cause significant physical pain. I have struggled with these conditions most of my 56 years, beginning when I was repeatedly physically and sexually abused as a child, and worsening over the course of my life as a result of ongoing sexual abuse, near-death experiences due to illness and violence, as well as repeated medical and workplace bullying. Despite that, for nearly three decades I was able to work. But as the traumas accumulated, I suffered worse and worse breakdowns. Eventually I could not sustain employment any longer. In 2020 I was accepted onto the DSP, and in 2022 I gained access to the NDIS.

I am pushing myself well beyond my capacity to write this submission, despite the enormous distress this process has caused me, because I believe the NDIS Future Generations Bill 2026 directly threatens the safety, health, and survival of me and hundreds of thousands of other Australians living with disabilities.

2. My Story: What the NDIS Means to Me

Before I received NDIS funding, the only government support I had for my disability was via Medicare, and while I greatly appreciated it, it was both entirely inadequate and extremely expensive. The supports I received through Medicare cost a great deal out of pocket, and yet they were unable to stop me experiencing increasingly debilitating anxiety, depression, flashbacks, insomnia, nightmares and avoidance. As a result, I spent enormous amounts of money pursuing every therapy and treatment modality I could access, from the well-studied to the experimental. And still, I self-harmed regularly and eventually spent time in the hospital psychiatric ward. By 2020, I was bed-bound for months-long stretches. I had sores on my back because I couldn’t wash my sheets. Food rotted on my countertops. I couldn’t shower, brush my teeth, or even make it to the toilet - I am ashamed to say I often urinated in bottles because I had no capacity to leave my bed. I was almost entirely isolated, and I was actively planning for voluntary euthanasia.

Shifting from JobSeeker to the DSP meant that I could move out of Sydney, a city where I had been subject to extremely damaging workplace abuse as well as violent physical assaults. I was able to commit more fully to trauma therapy, but I continued to find even the basic functional requirements of life nearly impossible to manage.

Being accepted on to the NDIS was a turning point for me

Being accepted on to the NDIS was a turning point for me, providing me with supports when I am not functional, and helping me increase my functionality. The resulting benefits have been wide-reaching: I no longer live in continuous filth, I am now able to shower and brush my teeth most days, and I have an easier time shopping and cooking. I am assisted to attend doctors’ appointments, and to be more social, and I have even started a small amount of volunteer and paid work.

The NDIS did not give me a comfortable existence. My treating team informs me that the trauma I experienced has resulted in a permanent brain injury. My disability is severe and lifelong, and I will never be free of the suffering due to my mental health conditions. But due to the NDIS, I have a better life. I will always need support to maintain the gains I have achieved in the last four years. But it is not melodramatic to state that without the NDIS, I would absolutely be dead.

3. My Position: Reform vs. Gutting Core Values

I want to be clear: I understand and support the need for NDIS reform. Systemic sustainability is vital.

But sustainability cannot come at the cost of a dramatic increase in the suffering of people with disabilities.

We are a rich country, and while of course we need to spend our money wisely, we have a choice about where our priorities lie. We can choose to purchase nuclear submarines, or give tax breaks to resources companies, or to the very wealthy, or multinationals. Or we can choose to help people who wake up every day to lives that are more difficult than most Australians could begin to imagine.

Even before I was diagnosed with a disability, I knew which of those priorities was the most important. There is no value in defending our country from outside invaders if the quality of our lives is not worth defending.

While the changes to the NDIS legislation have been billed as “protection,” they are actually the complete opposite. True, successful reform can only happen if the government genuinely involves us in the process from the very first moment, honouring the principle of “Nothing about us without us.”

From my perspective this new law is not a reform aimed at making the NDIS “sustainable” - it is a gutting of the core values and principles of the original legislation, and a betrayal of Australia as a wealthy, compassionate society whose first priority should be to protect the most vulnerable among us.

4. The Imminent Danger of the Proposed Changes

While this Bill threatens nearly everyone on the scheme or wanting to access it, I can speak best about the damage it would do to people like me who live with psychosocial disabilities.

If this Bill passes in its current form, I and many others like me will certainly deteriorate, in a profound way. Despite claims to the contrary, many of us with severe psychosocial

Senate Inquiry Submission

NDIS Future Generations Bill 2026

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disabilities will lose vital supports, be kicked off the scheme entirely, or be unable to access it to begin with.

And if that happens, the results will be not just disastrous but also enormously expensive.

As I wrote above, the existing Medicare and community supports I used a decade ago were entirely inadequate at the time - and since then, many of those have been dismantled.

I certainly support the proposal to increase community supports both for those who are not on the NDS and for those who are.

But those supports have not yet been created, and considering the pushback from those who would offer them, use them, and fund them, there is enormous uncertainty about whether they will be created at all, let alone by the time this Bill aims to start cutting budgets and participants. It is shockingly cruel to push terrified people away from the NDS into a void meant to be filled with supports which are at best unknown and at worst either entirely inadequate or totally non-existent.

In the absence of adequate supports, I would lose whatever capacity I have gained for care of self and home. I would no longer be able to clean or shop or cook - let alone work. I and many others will risk ending back up in hospital, which will not only make our lives miserable, it will also put a strain on an already overburdened Medicare system. While the decrease in the NDIS budget might look better on paper, the cost to the actual human beings affected by the changes, as well as to the rest of society, will be immeasurable. It is not melodramatic to say that I and others will potentially end our lives.

I am deeply alarmed by almost every part of the proposed law changes; if I had capacity and time, I would write a submission 10 times the length of this one. But I do not. So I will point out the following elements which specifically concern me, and state that I support the many other submissions which critique the areas I have not been able to address myself. I apologise in advance if there are unintentional errors - the time period for submissions on legislation this complex was unacceptably brief and procedurally unfair for anyone, let alone those of us living with disabilities.

A. Shifting Suspicion and Liability Entirely onto Participants

In my understanding, the administrative changes in this Bill shift the entire scheme
into a deeply punitive model that places all administrative burden and risk onto
participants, while legally shielding the NDIA from any accountability.
 Firstly, Schedule 2 introduces an automated debt-generation web. Participants and
family nominees face a slashed 90-day window to submit claims, alongside a

terrifying mandate to retain physical records for up to 7 years. If an Automated Decision-Making algorithm audits a past claim and a participant cannot produce a years-old receipt, the legislation dictates that they automatically owe that money to the NDIA as a debt, with zero exemptions or legal defences allowed. This is not about regulating the provider market or stopping corporate fraud; it is the replication of the exact, catastrophic architecture of Robodebt, turning the lens of criminal suspicion onto vulnerable citizens for minor administrative errors.

B. The Changes Regarding Permanence and Treatments:

I recognise that the NDIS is designed for people whose disabilities will not be cured or significantly benefitted by available treatments. And so, in cases where there is a time chance a treatment might provide a remedy, it is reasonable to ask that participants have made whatever attempts they can in order to ameliorate their condition.

On the other hand, I am extremely concerned about the Bill’s changed language around\the seeking of treatments.

As I understand it, the Bill would add to the eligibility criteria that a person needs to have tried “all” “appropriate” treatments which are evidence-based, regularly used in Australia and can reliably be expected to reverse, alleviate, or even just improve the impact of an impairment.

I am especially concerned about how this new requirement will play out given that expert opinions may no longer be accepted as evidence. It could be left entirely up to a bureaucrat with limited or no knowledge of disabilities - or even worse, an algorithm

to decide the meaning of terms such as “all”, “appropriate” “reliably” and “improve”.

These changes could easily become a way of removing the poorest of people with psychosocial disabilities - or even worse, a path towards rejecting psychosocial participants from the scheme entirely - a move which would cause grievous damage ton tens or hundreds of thousands of sufferers.

At this point in time, treatment of psychosocial disabilities is as much an art as it is a science.

While there are medications and therapeutical modalities which, according to studies, help some people, there is no way to know for sure which ones will “reliably” benefit a particular individual. Even the new genetic tests used to determine which drugs are most compatible with a person’s DNA are far from 100-percent accurate- on top of being expensive and not covered by Medicare.

Before the NDIS, I spent 25 years trying over 15 different medications. While some did briefly improve the impact of my impairment, none of them cured me, or provided any more than a temporary slowing of the worsening of my disability. Some of these medications made my symptoms a bit better, but they didn’t stop the nightmares and insomnia, the self-harm, the paralysing guilt and shame, or the flashbacks. And in the process, they caused actual harm: they gave me serotonin syndrome, destroyed my physical health by skyrocketing my weight and cholesterol levels, and in some instances-they made me actively suicidal.

Similarly, I have spent 40 years in therapy. I tried countless modalities (from CBT to EMDR) across dozens of practitioners, and treatments like tDCS and TMS, as well as travelling overseas to work with psychedelic therapy. And still my disability worsened.

All of this came at enormous cost. Most of the modalities I worked with were again not covered by Medicare, and many cost thousands of dollars. There were years I spent more money out-of-pocket on treatment than I spent on housing - something I was able to do because I was working, and because I received some help from my family.

But now I cannot work anymore, and my family cannot provide the level of support I get from the NDIS. At the time I was accepted onto the NDIS, my longterm psychiatrist had determined that there was no reasonable hope I would be helped by any more medications or combinations of medications, and that the negatives of trying them far outweighed any potential benefits.

It is vulnerable and scary to expose myself and my history in this way because I am aware that, under the new rules, despite everything I have tried, I might no longer qualify-even though I am entirely deserving of the support, according to multiple expert practitioners.

And many other people with disabilities would be in even worse situations than I am. Due to their disability itself, many have never been able to access or maintain employment, and they do not have families who can help them. These people do not have the capacity-the time, energy, or money-to try even a fraction of the treatments which a non-expert bureaucrat decides might have a “reliable” chance to meet the low bar of improving a permanent impairment. Not curing it-not stopping us from, for example, being suicidal, having panic attacks, or being unable to leave the house-but just feeling slightly better.

It is cruel and unreasonable to reject potential participants from the NDIS because they don’t have the capacity or finances to risk wrecking their health by trying every single medication which has shown the potential to even slightly help people with their disability.

lives trying every single available therapeutic modality - because it would take many lifetimes to do so - using money they need for food and housing. It is cruel and unreasonable to reject people from the scheme because they can’t access, for example, MDMA-assisted therapy near where they live, or because they don’t have $30,000 to pay for it - just because these treatments might be of benefit, no matter how minimal or how temporary. There is also a significant possibility that these changes might drive even more desperate people to underground practitioners. And to be clear, my point is not to criticise those practitioners, who offer hope where none is otherwise available, but instead to indict the system. When a government underfunds a vital support scheme or sets impossible requirements for access, they are effectively pushing people into the unregulated margins just to survive. That is a failure of public safety and a failure of the state’s duty of care. Approximately 739,200 to 853,000 adults with disabilities in Australia live below the poverty line, accounting for roughly 38% of all adults in poverty. People with disabilities are significantly overrepresented, with 1 in 6 living in poverty, compared to 1 in 10 for those without. Most people with disabilities are struggling to get through the day. It would be supremely unfair to punish them twice, refusing them support due to conditions they experience as a result of the disability itself. The proposed changes will end up excluding many from the NDIS, not because their impairment isn’t severe enough, but because they do not have the physical, emotional, or financial capacity to meet an impossible set of requirements. These changes will not somehow magically get rid of the genuine need for support - they will only reduce the number of people who receive support - just as the proposed focus on scheme sustainability doesn’t magically reduce the number of disabled people in our country. In the process, the changes will also create a two-tiered society: the few who can access the scheme under these new terms will be those who happen to have access to enough money to spend on treatment. And the large number of disabled people who exist at or near poverty levels - especially those who reside regionally and rurally

will be condemned to lives of intense suffering, which will ultimately cost society so much more than it would to provide them with the care that they need and deserve.

C. Mandatory Registration and the Threat to Self-Management: While I recognise and support the need to protect the most vulnerable of us, mandatory registration will not achieve this goal. Instead, it will create insurmountable problems for me and others in similar situations - especially those of us living in rural and regional areas. A key part of the protection everyone wants lies in control and choice. These are not buzzwords, or optional extras for the scheme - they are central to what makes the NDIS work. As a survivor of both childhood and adult abuse, having choice and control stripped away recreates the exact dynamics of my past trauma - and in doing so, it actively creates harm.

Regional and rural areas often don’t have many options for support workers at all, let

alone registered ones. I am lucky that I do have some choices where I live, and so when I first started on the NDIS, I spent a number of anxious months trying to source the right providers. It was a very difficult process. The supports I received through small to medium companies, were unfortunately extremely negative experiences: their staff had no idea how to work with actual people with disabilities like me. As well, the companies constantly changed workers at the last minute and flooded my home with strangers, which made my trauma symptoms worse. Yet, they were not willing to be flexible when my needs shifted, as often occurred due to my disability. And despite the inadequacies of the service they provided, they were very expensive. 

I benefit much more from a support worker who is kind, patient, compassionate, mature and calm, and who has lived experience of trauma - none of which can be taught in a certificate course or checked via registration. It is much more beneficial to me to have a support worker who demonstrates those qualities than one who has a Cert III and registration, but no ability to genuinely meet me where I am. My current independent workers possess those qualities, despite not having the money and time to register, or to take a training course which will not make them any safer or more competent. And they do not charge maximum or weekend price caps, saving the scheme and thus taxpayers money. Crucially, living in a regional area, many of my excellent support workers do not work full-time in disability. If registration is onerous or expensive, they will simply leave the sector and focus on their non-disabled clients. The situation will be made even worse because under the new rules, small independent workers and family advocates are catched in a punitive surveillance web: they face a slashed 90-day window to submit claims, a mandate to keep records for up to 7 years or automatically face crippling debts, and an NDIA weaponised with police-like powers under the Regulatory Powers Act 2014, including entry, search, and seizure. I already know how painful it is having to rely on a system which acts as if I am not to be trusted; independent practitioners will not remain in a system that treats them like criminals. As a result, I will be forced back to registered providers who did more harm than good

assuming there are even enough registered providers to support all the people with disabilities in my area. Losing access to independent support workers won’t protect me. It will do the opposite, cause regression and relapse - which means my health will get worse, and once again, I am likely to end up requiring much more expensive extended stays and treatments in the Medicare system.

has recently been framed by politicians and the media as “hair cuts” and walks in the park. This is deeply problematic on many levels.

The first is that people with disabilities, just like everyone else in society, have a need and a right to get their hair cut, and to take walks. What the narrative seems to miss is that, unlike those without disabilities, people on the NDIS often cannot get their hair cut or take a walk without disability supports. Social and community access is necessary for many participants in order to accomplish fundamental life activities which people without disabilities take for granted.

The second problem with the recent framing is that for many participants, these outings are essential not just in the obvious way - helping us with grooming, exercise and mobility, for example. They are also essential because they prevent loneliness and isolation.

Community and social participation is a basic need of human beings - our lives cannot be good if we don’t have them - which is why it was a core part of the original NDIS vision. That should be enough in and of itself to argue for maintaining its centrality in the scheme going forward.

But it doesn’t need to be, because preventing loneliness and isolation also helps avoid a massive economic burden. People who are lonely and isolated cost governments around the world billions annually. Loneliness is heavily linked to poor physical and mental health outcomes, including higher rates of depression, cardiovascular disease, and cognitive decline. Socially isolated individuals have significantly higher rates of doctor visits, emergency department presentations, and hospital admissions. In Australia alone, equivalent excess health and lifestyle costs total roughly $2.7 billion annually.

For me personally, this funding allows me to get to the doctor, do my small amount of work, and counter the effects of my otherwise solitary life. If my budget were to be cut, there is no doubt that my mental and physical health would decline in ways that I find frankly terrifying.

My understanding is that there is an intention to cover the gap in services caused by budget cuts via community-based supports. I certainly endorse investment in non- NDIS supports such as these, in order to take some of the burden off the NDIS for those who can use them, and to help people with disabilities who have not qualified for access to the scheme.

But as mentioned above, these supports simply do not exist at this time. They were limited prior to the NDIS, and they have become even more scarce since. Reducing funding for a genuine and vital need before the creation of the services meant to address this need is a monumental failure of sequencing. It would be like choosing to fund a fire department only after you discovered your house was burning. And then wondering why the residents are panicking! As with so many of the changes proposed, it will cause drastic harm to participants who are dependent on social and community access not just for haircuts and walks, but for their basic health and functionality.

It is also crucial to consider that, even if the community-based supports existed to cover the gap a cut to NDIS funding would create, they would not be usable in many cases. My history of trauma - as well my regional location - make such community supports untenable. I have a significant amount of medical trauma in my past, and as result, seeing doctors is extremely difficult for me. I cannot get in a car with a stranger to drive 5 hours roundtrip to the nearest big city for necessary medical appointments. I need a support worker who is familiar and trusted, and who understands trauma and has done their own healing work, so that they can help my nervous system regulate. Someone without those skills, knowledge and ability would cause me panic attacks and PTSD flashbacks which would leave me worse off than before the trip. I would be incapable of using those supports - again, assuming they even existed. My health would decline as a result, causing enormous suffering and much greater expense in the longterm. The way this Bill empowers the minister to cut social and community access budgets - in what seems like an arbitrary way - is not only an unacceptable concentration of power in the hands of a single bureaucrat. It is also denies people with disabilities our basic dignity, while betraying the founding principles of the scheme - and it is financially counterproductive. I believe that government’s job is to improve the lives of the citizens. This aspect of the NDIS Bill, perhaps more than any other, will do the exact opposite. On a human and on an economic level, it would be unconscionable to attempt to save money by increasing loneliness and isolation.

E. The Changes to Section 31: Finally, I am entirely opposed to the proposed changes to the Section 31 principles relating to participant plans. These changes absolutely gut the spirit of the scheme; if enacted, they would set the disability community back decades, dragging us straight back into the dark ages of how people with disabilities are viewed and treated by the state. Flexibility, self-direction, choice and control, independence and individuality: these aren’t just buzzwords, nor are they extras which are pleasant to have but only if there’s enough money to fund them. They are crucial human rights principles, widely recognised as necessary elements of a decent and dignified life - which is the core goal of the NDIS to begin with. We all have a right to autonomy, bodily and otherwise. But disabled people - purely based on an accident before birth or after - have much less autonomy than others. To strip us even further of these foundational rights is to condemn people with disabilities to a permanent second-class existence. It destroys any possibility of us having the same sort of life as those who, by chance, did not become disabled - or at least have not become disabled yet. Even worse, as with many of the proposed changes, removing the Section 31 principles would be both less effective and more expensive in the long run. Non- individualised funding packages necessarily involve waste and want: some participants will get more than they need while others will get less. It’s highly likely

The Harm Is Already Here

To be clear, the harms I am describing are not hypothetical, and they will not occur only if the Bill is passed in its current form. The harm is already happening, due to the way politicians have framed the changes and how they have been developed and presented. People with disabilities are now being seen, not as human beings, but as an unsustainable budget item which is dragging down the country. We have been depicted as fraudsters living large on the taxpayer dollar. Our supports have been trivialised as lifestyle aids, rather than the truth, which is that they are vital to our lives.

Minister Butler spoke about preserving the social license of the NDIS, a goal I certainly share. But he has not, as far as I have heard, acknowledged that a crucial part of the politician’s job is to create and influence social license, rather than simply to react to it. And intentionally or not, Butler’s words and actions have actually had the effect of destroying the social license he claims he wants to save.

As a result, I and many others have of late been subject to an even higher level of hatred, bias, and contempt than usual. The toll of that, combined with the uncertainty about the future, have already precipitated a serious relapse for me; I have had to cancel the little bits of work I was doing, and am looking at another urgent extended hospital stay. People with disabilities are seriously discussing ending their lives, and I understand why.

All of this could have been avoided - and it could still be ameliorated. We urgently need to shift the language used to talk about the scheme and its participants as well as to justify the changes in this Bill. There is still time to reconsider the proposed, harmful changes, and instead approach the process of reform with actual collaboration and consultation - rather than the lip service being paid to the slogan “Nothing about us without us,” while simultaneously enacting changes that will affect absolutely everything about us, entirely without our input.

I say once again: I and many people with disabilities recognise the need for NDIS reform. But the only way to do that effectively, so that it continues to provide the support people with disabilities deserve without the fraud and the blow-outs, is to involve participants and providers in the co-design. Across social media over the last weeks and months, I have seen numerous examples of cost-saving measures brainstormed by people on the ground level of the scheme - the sort of solutions high-level bureaucrats and politicians don’t have the practical experience to think of. Our lived experience of the scheme, combined with your legislative skills, could save money in ways you haven’t considered.

It is not an exaggeration to describe this Bill as a threat not just to people with disabilities, their families, and the disability sector, but also to our democracy and our system of checks and balances. I therefore ask the Committee to recommend that the Senate vote against this Bill unless it is heavily amended to, at a minimum:

Remove the automated debt-generation trap and participant surveillance web (Schedule 2): Reject the slashing of the claim window to 90 days, remove the automatic debt-generation mechanisms for minor record-keeping errors, and strip the NDIA of inappropriate police-like entry, search, and seizure powers that turn a care model into a system of criminal suspicion aimed directly at participants.
Abolish the one-sided double standards on deadlines and accountability (Schedule 3): Restore the 21-day response timeframes for plan reassessments and protect the crucial “deemed refusal” rules so the NDIA remains legally accountable to participants. Remove the punitive power to revoke a participant’s status for being “uncontactable” for 90 days, which actively discriminates against those experiencing health crises or communication barriers due to their disability.
Drop the changes to the permanence and treatments tests: Protect current and future psychosocial participants by removing the impossible requirement to try “all” “appropriate” treatments; the bars to entry are already high enough and must not be weaponised by non-expert bureaucrats or algorithms to exclude the poor or those living regionally.
Completely protect self-management and reject mandatory registration: Stop the impending workforce flight of independent workers in regional and rural areas by maintaining participant choice, control, and autonomy over who enters their homes.
Reverse the proposed 50% cuts to social and community participation funding, as well as the 10% cuts to capacity building, while still building supports for those not on the NDIS: Refusing to fund a vital human need before alternative services exist is a monumental failure of sequencing.
Limit the use of automation in decision-making: Resist using automated algorithms and computer programs to make evaluative judgements, process claims, and handle payments, which will negatively impact participants - and especially those with psychosocial disabilities. This is particularly important because, as I understand it, government has not finalised a consistent, transparent framework to ensure safety and fairness in the use of automation. We cannot repeat the catastrophic mistakes of Robodebt, which demonstrated the immense human cost of letting unchecked, automated algorithms dictate the survival of vulnerable citizens.

Abandon the proposed changes to Section 31 principles: Protect the foundational spirit, values, and individual flexibility of participant plans as mandated by Australia’s legal commitments under the UNCRPD.
Avoid over-concentrating power in ministerial hands: Reject the inclusion of clauses that allow a Minister to bypass Parliament and unilaterally alter rules to force automated systems to work. Guarantee individual appeal rights against both automated decisions and ministerial cuts.

Conclusion

To the members of the Committee:

I myself never imagined I would need either the DSP or the NDIS - I was high-functioning for many years, was deeply involved in multiple communities, loved my work, and thought I would never retire. Due to my disability, I have already lost most of what makes existence meaningful: work, friendships, my physical health, romantic relationships, or physical intimacy, which I cannot tolerate, let alone enjoy. My days and nights are even more challenging than I could have imagined even a decade ago. But the NDIS has made this permanent life sentence bearable.

Please do not take that away - not just from me, but from every Australian - and especially not with a Bill whose provisions will weaken our democracy in ways which are absolutely unacceptable.

To be honest, it appals me that people with disability and their allies - already living such difficult lives - are once again being put in a position where we have to defend what should be basic rights. But it is even more appalling that we are put in a position of having to defend central tenets of our system of government.

That is why I ask you to urgently consider that this Bill in its current form threatens every Australian. We can all be harmed by unchecked bureaucratic power, and by denials of procedural fairness. And we are all one accident, illness or birth defect away from lifelong disability.

I absolutely hope that you or your loved ones never find yourselves in need of the NDIS. But I guarantee you that if, God forbid, you do - or indeed if you find yourselves dependent on any government program at all - you will be both profoundly grateful that you rejected this Bill.

Thank you for considering my submission.

Sincerely,