National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
I am writing to you not simply as a constituent, but as someone your government’s policies directly affect every single day. I am writing as someone terrified of what my future looks like under the current direction of disability policy in this country.
I live with Complex Regional Pain Syndrome (CRPS) in all four limbs, one of the rarest and most severe forms of an illness widely recognised as THE most painful condition known to medicine. This is not “chronic pain” in the way people casually understand it. It is a catastrophic neurological disease that hijacks the nervous system and turns the body against itself.
The pain is relentless, but CRPS is far more than pain alone. It causes extreme sensitivity where even light touch, clothing, movement, or temperature changes can feel unbearable. My limbs swell, tremor, spasm, change colour, lose strength, and become difficult to use. My nervous system exists in a near constant state of distress, as though my body is permanently trapped in fight-or-flight mode. Severe fatigue, cognitive dysfunction, and brain fog affect my memory, concentration, speech, and ability to process information. Basic tasks, showering, sleeping, walking, eating, or simply leaving the house become physically exhausting and unpredictable.
CRPS is widely known as “the suicide disease” because for many sufferers, the pain becomes so extreme, relentless, and medically untreatable that people begin searching not for comfort, but for escape.
Alongside CRPS, I also live with spinal damage, fibromyalgia, and Postural Orthostatic Tachycardia Syndrome (POTS) lifelong and incurable conditions that further impact my mobility, cardiovascular system, cognition, fatigue levels, and ability to participate in everyday life. There is no surgery that can restore my body. No treatment that can return my quality of life. At best, specialists speak about reducing symptoms by small percentages on a scale that already exceeds what most people could endure or even comprehend.
Yet despite the severity of these conditions, I am watching supports become harder to access, harder to keep, and harder to survive on.
The ongoing cuts and changes to the NDIS have created enormous fear within the disabled community. Every reassessment, every removed support, every tightening of eligibility sends the message that disabled Australians must repeatedly prove their suffering in order to deserve basic dignity. Instead of creating stability, the system creates terror, terror of losing the supports that make survival possible at all.
And for people like me, survival is already fragile.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
I live in housing commission surrounded by instability and danger. I survive on a disability pension that falls below the poverty line. Nearly every dollar I receive disappears into medical costs, transport, medications, specialist appointments, mobility needs, and essential expenses that the NDIS either refuses to cover or no longer adequately funds.
There are weeks where I cannot afford to eat. During the process of trying to gain access to the NDIS, I would go days without food just to afford specialist appointments the system repeatedly demanded I attend, only to receive the same reports confirming the same permanent conditions. Even now, with NDIS support, food insecurity remains part of my reality.
I manage all of this largely alone.
I do not have the safety net many people assume disabled individuals have. I carry the weight of medical decisions, bills, appointments, worsening pain, and survival entirely on my own while living in a body that continues to deteriorate.
Even the possibility of companionship becomes complicated under the current system. Entering a relationship risks financial dependence and the loss of essential supports. Disabled Australians are effectively punished for seeking love, stability, or partnership. No healthy relationship should begin with the expectation that another person must suddenly become financially responsible for someone’s survival because government support disappears.
This kind of forced dependence creates dangerous power imbalances. Disabled Australians already experience disproportionately high rates of domestic violence, coercive control, financial abuse, and neglect. Your government speaks often about protecting vulnerable Australians from these harms, yet disabled people are continuously pushed into situations that make us more vulnerable to them.
What is most difficult to explain to able-bodied people is that this is not living in any meaningful sense of the word.
Especially when disabled Australians are constantly spoken about in news reports, political discussions, newspapers, and social media as though we are burdens, frauds, or part of an “unsustainable” system. Every time the public hears how much the NDIS “funds” disabled people, they are led to believe we personally receive that money as luxury. We do not.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
We are funded at those amounts because everything costs more once disability enters your life.
Physiotherapy costs more. Occupational therapy costs more. Reports cost more. Medical treatments cost more. Equipment costs more. Support workers cost more. Transport costs more. Even accessing the community costs more.
When disabled people go to get a haircut, go to the movies, or see friends, the NDIS is not paying for those activities themselves. We pay for those things out of our own pocket like everyone else. What the NDIS funds is the support worker required to accompany us because many of us physically cannot access the community independently.
Disabled Australians are not living in luxury. We are surviving inside a system that inflates every basic necessity required to participate in society.
Despite the narrative often pushed in the media, the NDIS is not a burden, it is an investment. Research has shown that for every dollar spent on the NDIS, approximately $2.25 is returned to the broader economy. Supporting disabled Australians does not weaken this country; it strengthens it. Cutting support does not save Australia money in the long term. It pushes vulnerable people further into crisis while undermining a system that benefits the broader community.
And that is exactly what this has become for many of us: survival.
Surviving pain that medicine cannot fix. Surviving poverty while disabled. Surviving systems that demand endless evidence of suffering. Surviving policies that continue to narrow support while publicly speaking about inclusion and dignity.
The conversation around disability in Australia cannot only focus on keeping people technically alive. It must also focus on quality of life, autonomy, safety, dignity, and whether disabled Australians are being given any meaningful pathway toward stability or humanity.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
Right now, many of us are not.
In parts of the United States, the severity of CRPS is recognised to the extent that medical aid in dying is considered a legitimate option when all treatment avenues fail. Yet here in NSW, despite living with incurable, irreversible, and unrelenting suffering, I am excluded from the legislation entirely.
Under the current Voluntary Assisted Dying laws, suffering only seems to “count” if death is medically predictable within 6–12 months. But what about people like me whose bodies are not terminal in the traditional medical sense, yet whose lives are defined by unbearable suffering with no realistic hope of improvement? Why do we not deserve autonomy? Why are we expected to endure decades of pain that no medication, surgery, or treatment can relieve? Why are we expected to survive in fear that our already limited supports could be stripped away tomorrow, leaving us to disappear into the cracks of a system that increasingly treats disabled people as financial liabilities rather than human beings?
When you look at my life, the irreversible pain, the incurable conditions, the poverty, the unsafe housing, the loss of autonomy, the loneliness created by disability policy, and the complete absence of any meaningful pathway toward improvement, it cannot honestly be described as quality of life.
What I have is survival. Bare, stripped-back survival.
And the law currently demands that I continue surviving no matter how much my body deteriorates, how severe the suffering becomes, or whether I eventually lose the supports keeping me alive in the first place.
It is important that you understand this clearly: I do not want to die. I want to live.
But if this government continues stripping away the supports that make survival possible, then at the very least I should have the right to choose when my suffering ends.
I am not asking the government to encourage death.
I am asking for recognition. For autonomy. For dignity. For the right to access support without constantly fearing it will be taken away. For the right to choose in cases where suffering is permanent, incurable, and medically
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
unrelievable.
People living with lifelong, irreversible disabilities deserve more than being told their suffering does not meet the “right kind” of criteria. We deserve the same humanity, dignity, and autonomy afforded to terminally ill and able-bodied Australians alike.
I ask you, as Prime Minister, to truly understand the fear disabled Australians are living with right now. Because fear is what this system increasingly gives us.
Fear of losing support. Fear of poverty. Fear of homelessness. Fear of abuse. Fear of abandonment. Fear of being forced to endure unbearable suffering indefinitely because the law refuses to acknowledge it.
If you asked me what I would choose between surviving under an increasingly restricted NDIS system or having access to voluntary assisted dying, I would choose assisted dying.
Not because I want to die.
But because there comes a point where being forced to exist without dignity, autonomy, adequate support, or relief stops resembling life in any meaningful sense at all.
And no human being should be forced into that position by the government meant to protect them.
Prime Minister, history will not remember governments by how much money they saved through cuts and restrictions. It will remember how they treated the most vulnerable people under their care.
Right now, disabled Australians are begging not for luxury, but for dignity. For safety. For autonomy. For the ability to survive without terror hanging over our heads every single day.
You still have the power to change course.
You still have the power to stop disabled Australians from being pushed further into poverty, isolation, fear, and hopelessness.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1626
And you still have the power to recognise a truth this country desperately avoids confronting: forcing people to endlessly endure unbearable suffering without adequate support, autonomy, or choice is not compassion. It is cruelty dressed up as policy.
If this government cannot guarantee disabled Australians a life with dignity, safety, stability, and meaningful support, then it cannot continue pretending that simply keeping us alive is enough.
Because survival is not the same thing as living.
And right now, too many of us are being asked to suffer endlessly just to satisfy a system that no longer sees our humanity.
I hope this letter forces you to sit with that reality.
Because disabled Australians live with it every single day.
I am not writing this for sympathy. However, Mr Prime Minister, empathy goes a long way.
I am writing because people like me are being left behind by systems that were supposed to protect us.
Please do not allow disabled Australians to become invisible in the pursuit of budget savings and policy reform.”