National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 479 - Supplementary Submission
From: Sent: Monday, 1 June 2026 7:29 PM
To: Community Affairs, Committee (SEN)
Subject: The NDIS bill
Hi Parliament
My name is I’m 31 years old and I have a degeneraƟve geneƟc condiƟon called ADOA plus syndrome. It has no cure.
I’m hard of hearing with bilateral cochlear implants, I’m losing my vision and my muscle and nerve funcƟon in my body is steadily worsening.
I struggle to walk steadily more oŌen than not as my balance is affected by ataxia and I am at risk of falls.
Because my disorder is rare, there are very few specialists within Australia, I am unable to work (though I would like to very much) and I rely on the ndis to provide support.
When you have a disorder that effects mulƟple systems but stems from one condiƟon you rely on assessor’s to understand the complexity in f the disorder and realise there isn’t one “primary” disability.
The changes of not considering the person as a whole runs the risk of being put in a box oŌen labelled “too hard” or not “cost effecƟve.”
You say you are working with the disabled community but as well as shiŌing cases you deem “not disabled enough” or the “wrong” kind of disabled out of the ndis onto states that are ill prepared for their care, you are also severely impacƟng those of us who have more complex disabiliƟes with these proposed changes.
I rely on support workers for so called “social and community parƟcipaƟon”
That for me looks like bare minimum:
Accessing the doctors
Being able to buy food, visit the shops and exercise autonomy and choice in where I go with the support workers.
It means I’m able to leave the house as I struggle to walk, see and communicate effecƟvely on my own.
I must underline how important it is for you all to understand that many people with disabiliƟes, myself included can only maintain capacity, taking away or severely limiƟng how much resources we have to maintain what capacity we have will be seriously detrimental to our wellbeing. To limit our contact with others is one thing, but limited ng access to physiotherapy, speech therapy, occupaƟonal therapy, anything that can help us funcƟon day to day, you are not just axing numbers on a page but people who depend on these services.
I will let others argue against the cuƫng of an ever increasing number of people from the ndis because they may be beƩer equipped than me to do so.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 479 - Supplementary Submission
But from my own perspecƟve, the proposed changes to the ndis in this bill will be severely damaging to people who otherwise disabiliƟes and their health.
There is a lot more I could write but I just want to hammer home to you all how much this bill will affect us. We need our support workers, we’ve already jumped through so many hoops to prove our disabiliƟes and we are being treated as disposable and just numbers on a screen and dollars to cut.
Many of us are on a 25K at most disability support pension and while it is a lifeline it is nowhere near enough for those of us who have no choice but to be on it. We don’t all have a community around us that will rally.
For me as a person with a syndrome with no cure I hope you understand that there aren’t treatments. Some days are beƩer than others but it is the understanding and knowledge of drs, specialists and occupaƟonal therapists, of support workers and everyone who actually knows me that should have a say. Ditching reports from these people and relying on an interview by a person who doesn’t understand the condiƟon or how it affects me day to day is never going to work.
I’m at a loss for what to say to actually make you all listen there are so many of us that know that yes the NDIS needs fixing but not like this and not the way you’re going about it.
Sent from my iPhone
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