Submission to the Senate Standing Committee on Community Affairs
It is appreciated being able to make a statement to this committee, as I was unable to commit to within the two week timeframe previously provided. For someone with a severe neuro cognitive disorder which is energy limiting
- tight turnaround times makes it impossible to respond to such important matters, and it requires the involvement of carers just to put a statement together.
So I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am an in the process of applying to be a NDIS participant and a person living with permanent and significant disability, which by its nature is a huge adjustment, let alone tackling NDIS application.
I wish to outline the harm this Amendment Bill will cause if it is passed in its current form. I believe the Bill is too far-reaching and requires substantially greater scrutiny before Parliament considers its passage.
Many of the proposed changes remove safeguards that people like me rely on to live safely, independently and with dignity.
Dignity is something that is difficult to maintain when independence and an ability to self-manage become a distant past.
Parliamentary Scrutiny and Transparency
The consultation period for this Amendment Bill is extremely short despite the extension. This is not sufficient to allow meaningful consultation with people living with disability, particularly those with complex neurological and cognitive conditions.
Living with my disability means I cannot simply sit down and read lengthy legislative documents. Reading, concentrating and processing information significantly worsen my symptoms. I often require information to be broken into small sections over many days, and I rely heavily on my husband and primary carer to explain documents, assist with communication and prepare submissions. A two-week consultation period effectively excludes many people with disabilities like mine from participating in decisions that directly affect our futures.
Recommendation: Amend the consultation period to a minimum of 30 days in line with best practice consultation standards.
Key decisions left to ministerial instruments, not law
The Bill would allow Ministers to determine eligibility criteria and funding levels through legislative instruments rather than primary legislation.
My life depends on the supports I receive through the NDIS. I require assistance with mobility, personal care, transport, meal preparation, therapy supports, specialist appointments and managing daily living. Decisions that determine whether I remain eligible for these supports should be made transparently by Parliament, not through ministerial instruments that can be changed without the same level of public scrutiny. Living with permanent disability is already uncertain enough without having to worry that the rules governing my supports could change with little warning.
Recommendation: Require that all decisions affecting NDIS eligibility and funding be made through primary legislation subject to full Parliamentary scrutiny.
Existing participants face narrower criteria and fewer rights to challenge decisions
The Bill would reduce review rights and make it more difficult for existing participants to challenge decisions affecting their plans.
Although I am not yet a participant, these changes are deeply concerning because they indicate how future participants like me may be treated once accepted into the Scheme. Most days I am completely bedbound. On other days I can tolerate very limited activity before experiencing severe post-exertional deterioration, neurological symptoms and extreme fatigue. If my future supports were reduced or automatically renewed without proper review, I could lose essential services despite my condition deteriorating. Having fewer opportunities to seek reassessment or challenge decisions places people with complex, fluctuating disabilities at considerable risk.
Recommendation: Introduce a “no harm” safeguard to ensure participants do not lose supports without equivalent alternatives and preserve independent review rights.
Unreviewable ministerial power to cut funding across all support categories
The Bill would allow funding reductions across support categories without review rights and remove the ability to carry over unspent funds between plans.
If I am approved for the NDIS, my supports will need to be carefully managed because my disability is complex. I require specialised equipment, allied health services and assistive technology that cannot always be purchased within a single plan period. Funding would also support therapies that help maintain my mobility, communication, nutrition and ability to remain at home. Losing funding without any opportunity to appeal, or losing the ability to save for higher-cost supports, would significantly affect my health, safety and independence.
Recommendation: Allow participants to carry forward unspent funds where they are saving for high-cost supports and provide independent review rights before funding reductions occur.
Requirement to exhaust treatment options before eligibility
The Bill proposes that people with disability must exhaust treatment options before becoming eligible for the NDIS.
Over the past several years I have undergone extensive assessment and treatment through neurologists, immunologists, ophthalmologists, and psychiatrists and numerous allied health professionals. I have trialled many medications and therapies. Some have provided little benefit, while others have caused significant side effects or
worsened my symptoms. Despite ongoing medical care, I continue to live with permanent functional impairment that affects every aspect of my daily life.
Requiring people like me to continually prove that every possible treatment has failed before accessing disability supports ignores the reality that treatment and disability support are different. Disability support exists because many people continue to experience profound functional impairment despite receiving appropriate medical care.
Recommendation: Remove the requirement to exhaust treatment options before eligibility.
Unvalidated functional capacity assessment tool risks misidentifying need
The proposed assessment framework relies upon a single eligible impairment and the I-CAN assessment tool.
My disability cannot be accurately measured during a single assessment. My physical function, cognition, communication, pain, fatigue and sensory tolerance fluctuate considerably from poor to worse. My disability is the combined effect of neurological, cognitive, physical, psychiatric and sensory impairments rather than a single diagnosis. Assessing only one impairment does not reflect how I actually live.
A functional assessment must capture my real-world ability to function over time, not simply how I present during a brief appointment.
Recommendation: Do not implement I-CAN until it has been independently validated for people with episodic and complex disabilities. Consider how individuals who are unable to participate in long interview duration of a few hours will participate.
Supports cut before replacement system is ready
The proposed reductions to community participation and capacity building supports would take effect before Foundational Supports have been established.
Although I spend much of my time at home due to my disability, community participation remains essential to maintaining my mental health, social connection and quality of life. Capacity-building supports help me preserve the small amount of independence I still have through therapy, rehabilitation and skill maintenance. Losing these supports before replacement services are available risks increasing my isolation, worsening my health and placing even greater pressure on my husband, who is already my sole full-time carer while also working full-time to support us financially. He is experiencing severe carer burden it is not suitable supports for long-term care of a permanent disability.
Recommendation: Delay any reductions to community participation or capacity-building supports until Foundational Supports are fully operational, adequately funded and proven to meet participant needs.
Closing Statement
I did not choose to become disabled. Before becoming disabled, I was independent, active and employed. I am now in the process of applying to the NDIS because my disabilities profoundly affect every aspect of my life. I require assistance with mobility, personal care, daily living, communication, accessing healthcare and participating in my community.
This Bill proposes significant changes that reduce safeguards for both current and future participants while increasing uncertainty about eligibility and support. For people living with complex and fluctuating disabilities, these changes are not theoretical—they have real consequences for our health, safety, independence and dignity.
The NDIS exists so Australians with permanent and significant disability can live with dignity and participate as fully as possible in society. I respectfully ask the Committee to recommend substantial amendments to this Bill to ensure participants retain meaningful review rights, transparent decision-making, appropriate assessment processes and continued access to the supports we rely upon every day.
Thank you for considering my submission.