National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
NDIS Amendment Bill / NDIS (Securing the NDIS for Future Generations) Bill
To the Committee,
Thank you for the opportunity to make this submission.
My name is . I am an NDIS participant living with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a permanent, debilitating neurological condition that affects every aspect of my life.
This submission responds to proposed changes in the Bill relating to independent merits review, assessment processes (including automated and standardised approaches), funding flexibility, and participant choice and control.
Before becoming unwell, I was a vibrant young woman with a full-time job, an active social life, a partner, hobbies, and a deep love of movement. I ran on the beach daily, even in the rain. I was independent, physically strong, social, and deeply engaged in life.
Over the course of my illness, that life disappeared.
I now spend most of my life confined to bed or the couch, often 20–24 hours a day. I live inside what others would call a home, but what often feels more like a jail. I see the same four walls of my bedroom and lounge room 90% of every day. My world has become incredibly small.
In my dreams, I run with the wind in my hair and the strength of a healthy body. When I wake from those dreams, my heart aches with pain and longing. There is daily grief in losing the life you once had, the independence and freedom that came with it. NDIS supports cannot give me back my old life, but they can help me create the best version of living I am capable of now and support me to participate in a life as full as my disability allows. They can protect the function I have left and help ensure my world does not shrink any further.
Living with severe ME/CFS means every single action has a cost.
In my life before, I never experienced the level of suffering I endure daily now. The concept of deciding whether it takes more energy to say, “OK Google, turn my bedroom lights off” or to reach out, pick up my phone, open the app, and press a button was foreign to me, as I’m sure it is to you. How could either of those things take any energy? How could anyone lie in bed desperately wanting a sip of coffee as it goes cold beside them but not have the energy to reach out and pick up the cup? How could anyone lie in bed soaking wet and freezing
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
from sweating through their pajamas but be unable to gather the energy to stand up and change clothes? These are the questions I face daily.
Even basic actions can become impossible. This is not fatigue. It is a total functional limitation that affects movement, cognition, energy, and recovery.
What I worry many people without disability do not realise is that the NDIS does not fund extras or luxuries. It funds the small practical supports that make an impossible life more manageable. It funds dignity, safety, function, and access to the severely limited life I still have.
For me, support is not about convenience. It is about preserving function and preventing further decline.
Small changes can mean the difference between coping and crisis.
The wrong decision can shrink my world further. The right support can restore part of it.
I know this because I have lived both.
One of my strongest concerns about the proposed changes is the preservation of independent merits review, including maintaining the power of the Tribunal to directly substitute decisions.
This is not a theoretical concern for me. It is deeply personal.
I went through the AAT process to challenge NDIA decisions regarding my supports. That process was exhausting and incredibly difficult while living with severe ME/CFS. The advocacy required took energy I did not have.
But ultimately, the Tribunal overturned the decision and funded the supports I was seeking.
That outcome was life-changing.
Since receiving those supports, my deep sleep quality has improved. My ability to pace day-to-day has improved. My access to my kitchen has been restored. I feel freer in my home, more independent, and more capable.
Something as simple as being able to reconnect with the outside world from my own room has been emotional. You forget how much you miss the outside until you are barred from it. Being able to let daylight into my room again feels human.
These are not minor outcomes. They are meaningful improvements to my health, independence, and quality of life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
My experience demonstrates that the independent review process can work.
The original decision did not properly reflect my needs. Independent merits review corrected that.
If the Tribunal did not have the power to make a direct and binding decision, I fear my outcome would have been delayed further or lost entirely in another cycle of NDIA reconsideration.
For participants with significant disability, delay is not neutral. Repeated process is not neutral. Administrative burden is not neutral.
Delay can mean deterioration. Delay can mean worsening physical health. Delay can mean crisis.
I strongly urge the Committee to preserve genuine independent merits review with the power to substitute decisions, not simply remit matters back to the NDIA.
This process must remain a binding, independent safeguard capable of correcting individual and systemic decision-making errors, not a review mechanism that returns participants into the same decision loop.
Having adequate support is what gives me quality of life. Since being adequately supported on the NDIS, I have stopped having to use more energy than I have for basic daily survival. This has transformed my life from a slow but steady decline toward full-time, hospital-level care into an ability to pace my limited energy and still participate in small parts of life that make me feel alive. It is the difference between living and merely existing.
Supports under the NDIS are not “extra help.” They are the difference between maintaining what little function I have and sliding further into decline.
The principle that NDIS supports exist to maintain functional capacity and prevent deterioration must remain central to how supports are assessed and funded.
These decisions are not abstract. They are lived. They are felt in the body every day. They shape what kind of life is still possible.
My disability cannot be accurately understood through averages, categories, or standardised assumptions. It requires individual context.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
Several of the proposed changes in this Bill appear to move in the same direction — away from individualised assessment and towards system-wide standardisation.
This includes increased reliance on automated or standardised assessments, the introduction of blanket caps, and the ability for central decision-makers to make broad changes across categories of supports.
Individually, each of these changes may be presented as administrative or efficiency improvements. However, in practice they collectively shift the system away from assessing what a person actually needs in their daily life, and towards what is administratively consistent across groups of people.
People with disability are not uniform, and even within a single diagnosis, function varies widely. My needs are highly individual and fluctuate significantly.
A standardised assessment may capture whether I can technically complete a task. It may completely miss what it costs me physically to do so, what symptoms it triggers afterwards, how long recovery takes, or what I must sacrifice elsewhere in order to do it.
This nuance matters.
Two people may both appear able to perform the same task. One may do so freely. Another may do so at the cost of days in bed afterwards, severe pain, worsening symptoms, or permanent reduction in baseline function.
If policy relies too heavily on standardised assessments, automation, or broad categorisation, participants like me risk becoming invisible within the system.
My needs cannot be meaningfully assessed without individual context.
Blanket caps, category-wide reductions, or broad changes to funding that do not take into account individual need risk removing supports that are essential to daily functioning.
Without that individual context, there is a real risk that people like me with complex or fluctuating conditions will be systematically misrepresented within the system.
Any assessment or funding system must retain meaningful individualised functional assessment as its core principle, rather than relying primarily on standardised or automated functional assessment tools that cannot account for individual context, fluctuating disability, or the real-world cost of activity.
Similarly, proposals that allow broad reductions or changes to supports across groups of participants from a central authority do not reflect the reality of disability. What is reasonable for one participant may be devastating for another.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
I am extremely concerned about any reduction in funding for social and community participation.
For people with severe disability, social participation is often misunderstood as optional or recreational.
It is not.
For me, social participation requires enormous planning and comes with a physical cost. Seeing a friend can leave me bedbound afterwards. It may require days of recovery.
And yet it remains essential.
Connection to other people is not a luxury. It is part of being human.
When disability has already taken your work, spontaneity, mobility, hobbies, and much of your independence, access to social connection becomes even more important, not less.
Social and community participation supports must be explicitly recognised as essential functional supports for wellbeing and community inclusion, not discretionary or secondary supports.
For many participants, including myself, NDIS core supports are already fully allocated to essential daily functioning. There is no surplus to absorb reductions.
This means any proposed percentage-based cuts will not be experienced as abstract adjustments. They will be experienced as a direct reduction in the supports I rely on to live my daily life.
Reducing my social and civic participation supports does not simply reduce activities — it is a direct cut to my core functioning. It increases isolation and shrinks my already extremely limited life further. These cuts would be devastating for me. I am already walking a tightrope of need, and any reduction in support would impact my independence, daily function, overall health, mental wellbeing, and sense of purpose and belonging in the world.
Choice and control are essential to making supports usable in real life. Any reduction in participant choice and control, including restrictions on plan management options or increased reliance on agency-managed supports, risks making supports less usable even if they technically exist.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2431
Choice and control are not administrative preferences for me.
My ability to choose providers and supports that work for my body, my home, and my functional needs is fundamental.
When you live with severe disability, small differences matter.
Who provides support matters. How that support is delivered matters. Whether it fits your routine matters. Whether it conserves energy matters.
Participant choice and control, including access to flexible plan management options and provider choice, must be preserved as a core design principle of the NDIS.
Reducing that flexibility risks creating a system that will not support people like me.
My life is already profoundly limited by severe ME/CFS.
The NDIS does not restore the life I had before illness, but it determines what kind of life is still possible within it.
Because this is my reality, the assumptions underpinning this Bill need to be re-examined.
At the Tribunal, my case was reviewed and corrected in a way that reflected my actual lived functioning, and the change to my support was not minor but life-changing in a very real, physical sense.
Behind every policy change are real people living real consequences in their bodies and their homes.
Living with the constant threat of your daily life and ability to survive being upended is not a burden Australians with disability should have to carry. Please get this right. Protect our quality of life. Let it be binding and enduring.