National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3206
Committee Secretary
Senate Standing Committee
On Community Affairs.
PO Box 6100
Parliament House
Canberra ACT 2600
1st June 2026
Concerning the proposed changes to the operation of the NDIS.
I request that my name and personal details remain confidential and not be disclosed publicly.
Parkinson’s disease is routinely labelled a “movement disorder.” That description is not just incomplete. It is dangerously misleading. Parkinson’s is a whole-body, whole-life condition. It affects every system: movement, speech, swallowing, digestion, bladder and bowel function, sleep, cognition, mood, motivation, balance, coordination, posture, muscle strength, even the simple act of blinking.
I am in the mild-to-moderate stages of Parkinson’s disease. Yet I already live with all these symptoms, fluctuating in severity from hour to hour, day to day. Currently, eligibility for the NDIS is based on your disease state, but under the Federal Governments proposed changes this will change. Under the new functionality-based assessment model, I may not be considered “severe” enough. Like thousands of others, I risk falling through the cracks, not because I am well, but because I am not yet visibly unwell enough.
This is the fundamental flaw.
Parkinson’s is a progressive, incurable neurological disease caused by the loss of dopamine signalling in the brain. It does not plateau or stabilise. It only moves in one direction: decline.
Before I was diagnosed, I mistakenly thought that Parkinson’s Disease was an affliction only affecting the elderly and manifesting in a mild tremor. No big deal. This is a complete misunderstanding. It can affect even younger adults, and it is devastating. Living with Parkinson’s feels like a slow, unpredictable shutdown of the brain. Some days I function relatively well; other days I cannot. Recently, my symptoms progressed suddenly from one side of my body to both, almost overnight. This is the nature of the disease: relentless, erratic, and irreversible.
A functionality snapshot cannot capture that reality.
Sleep deprivation and anxiety are my constant companions. Despite medication and strict sleep routines, I rarely achieve more than four to five hours of broken sleep. I wake exhausted. Fatigue is not occasional; it is my baseline. I ration my energy just to get through the day.
At night, dystonia grips my feet. Painful, involuntary muscle contractions curl my toes rigidly, as if set in concrete. I cannot control it. The signals from my brain misfire. Medication helps, but only to a point, and often with side effects. Each day, my capacity diminishes a little further.
There is no cure for Parkinson’s Disease. The only proven way to slow its progression is through intensive, ongoing, targeted exercise and specialised therapy. This is not optional. It is essential. People with Parkinson’s don’t exercise for general wellbeing; we do it to preserve our ability to walk, speak, swallow, and live independently.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3206
We work relentlessly with neurologists, physiotherapists, and exercise specialists to stay ahead of decline. But it is a battle we cannot win, only one we can delay.
Until now, the NDIS has recognised this. It has acknowledged that early, sustained intervention is not just compassionate but also cost-effective. I am on a very modest NDIS package, but will need the financial horsepower of the federal government to support me at the latter stages of the disease. At that point I will be over 65 and no longer eligible for the NDIS. Supporting people before they reach crisis reduces the long-term burden on the system.
The proposed shift to a purely functional assessment model risks dismantling that logic.
If eligibility is based only on “severe” impairment, people with Parkinson’s will be forced to deteriorate before qualifying for support. Early intervention will be lost. Prevention will be replaced by crisis management. Independence will be sacrificed unnecessarily.
This is not reform. It is regression.
The NDIS is not a luxury. It is a lifeline. Parkinson’s is not only physically and mentally devastating; it is financially draining. My care already involves multiple specialists and allied health professionals, with more required as the disease progresses. Managing the condition is like having a full-time job.
Medication regimens are complex and unforgiving. Doses must be timed precisely. Their effects are short-lived and inconsistent. “On” periods may bring mobility but also involuntary movements. “Off” periods can leave me unable to walk. I have been stranded in public, unable to move safely, at risk of falling, vulnerable and alone. Yet on a good day, I can appear completely unaffected.
This is the paradox of Parkinson’s: it is both visible and invisible, fluctuating and relentless.
Beyond the physical toll are profound personal losses. Relationships strain. Social lives shrink. Motivation fades. The disease erodes not just movement, but identity, independence, and joy. It is a slow, quiet dismantling of the self.
And still, we fight every day to remain functional.
But functionality comes at a cost. When I clean, drive, shop, cook, or attend appointments, I do so through pain, stiffness, tremor, fatigue, and cognitive fog. What appears “normal” is, in reality, effortful and unsustainable.
A momentary assessment will not see that.
Parkinson’s Disease cannot be fairly measured by a single point-in-time evaluation. It is dynamic, degenerative, and guaranteed to worsen. Any model that ignores trajectory in favour of snapshot will fail to capture the true burden of the disease.
The question is not whether people with Parkinson’s will lose function. It is when, and how much support they will have when it happens.
If the goal of reform is sustainability, then the answer is clear: invest early, maintain function, delay decline. If the goal is cost-cutting at any cost, then people with Parkinson’s will pay the price.
The federal government must recognise that Parkinson’s Disease is not a condition that can wait until “severe.” By then, the damage is done.
Include Parkinson’s Disease in the NDIS, not just at its worst, but throughout its course. Because by the time we look “severe,” it is already too late.