National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3269
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.
I am writing to urge the Australian Government to reconsider the proposed NDIS eligibility criteria so that neurodegenerative diseases such as Parkinson’s disease continue to qualify for support irrespective of a person’s current level of functional impairment.
The new proposed framework as outlined, appears that it will place overwhelming emphasis on visible disability and demonstrated functional decline before meaningful support can be accessed. While this approach may appear administratively practical, it fails to recognise the unique nature of progressive neurological diseases. Conditions such as Parkinson’s Disease, Motor Neurone Disease, Huntington’s Disease, atypical parkinsonian syndromes, and early-onset dementias are irreversible, degenerative, and life-altering from the moment of diagnosis. Their progression may vary between individuals, but decline is inevitable.
Recently people with Motor Neuron Disease have been granted accelerated access (within 7 days) to the NDIS without being “severely” disabled as it is recognised that the condition will progress and is likely to progress rapidly. Parkinson’s Disease is just the same but with much greater variability in the speed of progression.
Requiring people to “prove” substantial loss of function before becoming eligible for assistance creates unnecessary suffering and is ultimately economically counterproductive. Individuals diagnosed with neurodegenerative diseases often experience significant hidden symptoms years before severe physical disability becomes apparent. Fatigue, cognitive impairment, sleep disturbance, anxiety, depression, autonomic dysfunction, pain, and reduced executive functioning can dramatically impair employment, relationships, and independent living despite a person appearing outwardly capable.
Under the proposed system, many Australians are effectively forced to deteriorate before qualifying for support. This creates a cruel paradox in which people must wait until they are demonstrably disabled before they can access interventions that might help preserve their independence and participation in society. Early access to physiotherapy, speech therapy, occupational therapy, exercise physiology, psychological support, assistive technology, and home modifications can significantly delay deterioration, reduce hospitalisation, and maintain workforce participation for longer.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3269
The consequences of delayed support extend beyond the individual. Families and carers frequently absorb enormous emotional, physical, and financial burdens while attempting to bridge gaps in care. Many carers reduce work hours or leave employment entirely, compounding economic hardship and increasing long-term reliance on government services. Earlier intervention through the NDIS would not only improve quality of life for participants, but also reduce strain on the health system, aged care services, hospitals, and informal carers.
Importantly, neurodegenerative diseases differ fundamentally from many static disabilities because decline is medically certain, even if its exact timing is unpredictable. A person diagnosed with Parkinson’s Disease is not facing a hypothetical risk of future disability; they are living with a progressive neurological condition that will inevitably worsen over time. The current insistence on demonstrating severe functional impairment before assistance is granted fails to reflect modern medical understanding of these diseases.
Australia has the opportunity to adopt a more humane and evidence-based approach. Eligibility pathways should recognise diagnosis and prognosis for recognised neurodegenerative conditions, rather than relying almost exclusively on narrow assessments of current physical functionality. Such an approach would acknowledge the lived reality of these illnesses and align support systems with preventative and person-centred healthcare principles.
There is also a broader ethical issue at stake. A civilised society should not require citizens with incurable progressive diseases to exhaust their physical and psychological reserves before receiving assistance. Public policy should seek to preserve dignity, autonomy, and social participation for as long as possible, not merely respond after irreversible decline has occurred.
I respectfully ask that the Australian Federal Government review the treatment of neurodegenerative disease within the NDIS eligibility criteria, with consideration given to a diagnosis-based or presumptive eligibility model for recognised progressive neurological disorders. Such reform would provide certainty, fairness, and timely support for thousands of Australians and their families facing lifelong degenerative conditions.
Thank you for your consideration of this important issue.
In addition, I support the submission from Parkinsons Australia to this enquiry.
I request that my name and personal details remain confidential and not be disclosed publicly.