Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

31st May 2026

To: the Senate Community Affairs Legislation Committee

Re: Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

I write as a disabled person working in public policy, but most importantly as someone whose life has been profoundly shaped by attempting—and often failing—to access adequate disability supports in Australia.

I want to be very clear from the outset: I am currently unable to access the NDIS despite living with severe and disabling conditions including post-traumatic stress disorder, POTS (postural orthostatic tachycardia syndrome), fibromyalgia, and significant neurological complications. They are conditions that have fundamentally altered my ability to live independently, work, study without significant impairment, and access consistent medical care.

There have been times in my life where I have not been able to work at all. There have also been times where I have struggled to access basic supports that would significantly improve my safety and quality of life, things as simple as walking aids, in-home supports, out-of-hospital care, and therapeutic programs designed for complex, chronic, and intersecting disabilities. What could be easily treated to improve my ability to be a productive member of society, has been neglected, and my condition continues to deteriorate while I rely on my single mother to fill in the gaps she simply cannot afford.

What has been most devastating is not only the lack of access itself, but the process of trying to access support in a system that doesn’t think I’m sick enough. Therefore the idea that I must exhaust “all available treatments” before being considered eligible for long-term disability support is misinformed to the realities of living with a complex disability. In practice, this has meant being asked to pursue interventions that are either not realistically accessible, not evidence-based for my conditions, or financially impossible for my family.

• Some of the most relevant and emerging treatments for conditions such as POTS,
• fibromyalgia, and trauma-related disability are not covered in any meaningful way by
• public systems. Many are only available privately. In reality, accessing them would require
• financial resources far beyond what I or my family have, and my family already sacrifices
• significantly to afford my current medications and basic care needs.

This creates a painful contradiction: I am not well enough to function without support, but I am also expected to demonstrate recovery or “treatment exhaustion” through pathways that are not realistically accessible to me.

The impact of this has been profound.

Without access to capacity supports, my ability to live independently has been significantly reduced. Tasks such as maintaining routines, simple interactions, attending appointments safely, and sustaining basic daily functioning often require levels of energy and stability that I do not have. There have been periods where the lack of adequate support has not only limited my functioning, but has affected my sense of self-worth and place in the world. There were moments where I genuinely felt like I was becoming a burden to the people around me.

Moments where I believed that the people supporting me would be better off without me needing so much care and assistance. Moments where the emotional weight of dependence and NDIS exclusion became almost unbearable.

I raise this not for sympathy, but because it reflects something deeply important: when systems fail to provide timely, appropriate disability support, the consequences are not only practical—they are psychological, social, and existential. In fact, it almost took my life, and will take many others. No one should ever be placed in a position where they feel that their existence is a burden because supports are inaccessible. And yet, that is exactly what can happen when people are left without adequate capacity supports.

It is in this context that I am deeply concerned about the direction of this Bill and broader NDIS reforms, particularly at a time when there are already significant reductions and tightening of supports occurring within the system. From my perspective, many of these

• changes do not appear to be informed by lived experience of complex and chronic

disability. Instead, they risk reinforcing a narrow understanding of disability that does not reflect conditions such as PTSD, POTS, fibromyalgia, or other invisible and variable

disabilities. These conditions do not follow simple trajectories. They cannot be neatly categorised into stable levels of functioning. They overlap, and interact in ways that make rigid administrative systems particularly difficult to navigate.

My concern is that reforms which increase administrative burden, tighten eligibility interpretation, or require sustained engagement without sufficient flexibility will disproportionately exclude people like me—people whose disabilities are real, disabling, and ongoing, but who may not always be able to present in ways that systems easily recognise.

This is not only a question of fairness. It is a question of long-term system sustainability. When people are excluded from early, appropriate supports, their conditions often worsen. Their reliance on acute healthcare increases. Their capacity to participate in

work, education, and community decreases further. The cost does not disappear—it shifts into hospitals, crisis services, carers, emergency departments, and long-term

exclusion from the workforce. In my view, failing to invest appropriately in capacity supports is not cost-saving. It is cost-shifting, and ultimately, it is cost-increasing.

The emotional and social impact is equally important. Being required to continually prove disability in systems that already fail to recognise complex conditions creates stigma. It reinforces the idea that only certain kinds of disability are valid, and that people must meet increasingly narrow thresholds of suffering before support is considered legitimate.

I do not want other people to go through what I have experienced.

I do not want others to reach the point where they feel invisible in systems designed to support them.

I do not want others to feel that their only options are exhaustion, financial hardship, or emotional collapse in order to be recognised as “disabled enough.”

The National Disability Insurance Scheme (NDIS)

The NDIS was created to support dignity, independence, and participation. Any reform must strengthen—not weaken—that principle.

I urge the Committee to consider the real-world consequences of eligibility barriers, treatment requirements that are not financially or practically accessible, and administrative frameworks that do not account for fluctuating and complex disability. I ask that the Committee ensure that:

• Access to supports is not contingent on exhausting treatments that are inaccessible in practice
• People with invisible or complex disabilities are not excluded through rigid eligibility interpretations
• Capacity supports are recognised as essential, not optional or secondary
• System reforms do not increase psychological harm or stigma for people already navigating severe disability

No one should be made to feel that their life is a burden because the systems designed to support them are out of reach.

Thank you for considering my submission and lived experience.

Yours sincerely