SUBMISSION TO THE SENATE STANDING COMMITTEE ON COMMUNITY AFFAIRS
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: NDIS Participant 31 May 2026 - My Story
My name is . Before my stroke, I worked with young people with disability and believed strongly in the importance of dignity, independence and support. In 2020 I suffered a subarachnoid haemorrhage. I now live with aphasia and hemiparesis and require assistance with all aspects of -daily living.
I rely on the NDIS to get out of bed, transfer safely, shower, eat, communicate, attend appointments and participate in the community. I cannot safely manage these things alone.
My NDIS funding has been cut dramatically despite no improvement in my disability. My family and I are currently fighting that decision at the Administrative Review Tribunal. We previously challenged a similar cut successfully, yet a very similar decision was made again.
The consequences have been devastating. While I fight for supports that were previously recognised as necessary, I am watching my family absorb the consequences. My husband is dying of advanced stomach cancer. My daughters have significant injuries and health problems of their own, yet have taken on much of the care that was previously funded. I know the toll this is taking on them physically and emotionally.
The harm from NDIS decisions happens immediately. Reviews take months or years. People with disability and their families live with the consequences in the meantime.
That is why this Bill frightens me.
I would also like to note that 2 weeks is insufficient time to consult the disability community. It takes time to read about the changes, consider where they might harm us, and prepare a response. We are already struggling with limitations, and in my case without supports already proven necessary at AAT. A month should have been the minimum consultation period, anything less suggests bad faith.
- The Bill Changes the Purpose of the NDIS
One of my greatest concerns is the shift away from supporting the reasonable and necessary needs of individual participants and toward prioritising the financial sustainability of the Scheme.
I understand that the NDIS must be financially sustainable. However, sustainability should not become more important than the safety and wellbeing of people who rely on the Scheme to live.
I would not survive without support. This is not an abstract policy debate for me. Decisions about my funding affect whether I can safely eat, transfer, shower, communicate and participate in the community.
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The NDIS should exist first and foremost to support people with disability. Financial sustainability is important, but it should not replace individual need as the guiding principle.
Participants Need Protection When Decisions Are Wrong
My family’s experience has shown that NDIS decisions can be wrong.
We successfully challenged a previous funding cut, yet a very similar cut occurred again. Despite having already proven my case once, I am now fighting the same battle while living with the consequences of reduced support.
The answer to this problem should be stronger safeguards and accountability. Instead, this Bill reduces review rights and makes some decisions harder or impossible to challenge.
Review rights are not a technical legal issue. For participants like me, they are often the only protection available when a decision threatens our safety and independence.
I urge the Committee to preserve full merits review rights for participants.
Lower-Cost Supports Should Not Mean Worse Outcomes
The Bill would remove the requirement that lower-cost alternatives provide equivalent outcomes for participants.
This concerns me deeply.
A support should not be chosen simply because it costs less. It should only replace an existing support if it can achieve the same outcome for the participant.
For people with significant disabilities, the difference between a support that is merely cheaper and a support that is genuinely equivalent can be the difference between safety and harm.
Cost matters, but outcomes matter too.
The Assessment Framework Must Reflect Real Lives
I have severe aphasia. I cannot reliably explain my needs in conversation and I depend heavily on others to help me communicate.
I am concerned about the move toward standardised assessments and greater consistency across participants.
Disability is individual. Two people with the same diagnosis can have completely different support needs. Any assessment process must recognise this reality.
I am particularly concerned that people with communication disabilities may be disadvantaged by assessment processes that depend on a person’s ability to explain and advocate for themselves.
I would be scared if my medical and allied health team — who know me best — don’t have any input in what care I need. I have already seen the NDIS ignore my evidence (they didn’t read 11 documents in the internal review, including the Functional Capacity Assessment) and then told me I
The “Uncontactable” Provisions Are Dangerous
The Bill would allow participant plans to be suspended if the NDIA considers a participant uncontactable.
For many people with disability, communication difficulties are part of their disability.
This concern is not theoretical for me. The NDIA has repeatedly contacted me in ways that do not properly account for my aphasia. On one occasion I received a phone call regarding a complaint about the NDIA phoning me instead of e-mailing. My email details have also been changed without my permission, creating a risk that important correspondence could be missed altogether.
These experiences do not give me confidence that participants with communication disabilities will be protected by the proposed provisions.
No participant should lose supports because an agency fails to communicate with them in an accessible way.
Before any plan suspension occurs, there should be a requirement to consider the participant’s disability, use accessible communication methods, contact nominees and support people where appropriate, and conduct a safety assessment.