National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2457
Submission to the Inquiry into Proposed NDIS Changes
To whom it may concern,
My name is , and I am the grandmother of a beautiful 12-year-old boy named .has a rare genetic disability. He does not speak. He has an intellectual disability. He relies on others for most parts of his daily life. But he is not just a diagnosis – he is a boy who loves music, who laughs with his whole body, who deserves a life filled with dignity and connection.
And I am absolutely furious about what this bill is proposing.
You are talking about changing the definition of a “permanent disability.” For families like ours, that is not just a technical adjustment – it is terrifying. ’s condition is not going away. It will not improve with time. So how can you even begin to redefine “permanent” in a way that risks excluding children like my grandson?
It feels like the goalposts are being moved to save money, not to support people.
Then there is this idea of “substantially reduced functional capacity” being formally defined and assessed using standardised tools. That might sound neat and tidy on paper, but disability is NOT neat or tidy. It is not something that fits into boxes or scoring systems.
Every person with a disability is different. Every single one.
How do you expect a child like , who cannot speak, who cannot advocate for himself, to be “assessed” in a way that truly captures who he is and what he needs? Who will run these assessments? What training will they have? Will they understand children like , or will they just tick boxes?
And let’s be honest – are we heading towards automated or AI-driven assessments? Because that is deeply concerning. Who will own that data? Where will it be stored? How will it be protected? This is not just paperwork – this is my grandson’s life.
This all feels less like care and more like cost-cutting dressed up as reform.
Speaking of cost-cutting — let’s talk about the power this bill gives the Minister to cut funding to entire categories of supports. Entire categories.
How is that fair?
You are not trimming excess. You are putting essential supports at risk. Supports that allow people like to be part of their community. To go out, to engage, to experience more than just sitting at home existing.
Life is not meant to be survival only.
It is meant to have joy, connection, opportunity.
Reducing supports does not fix fraud. It does not fix inefficiencies. It simply punishes the most vulnerable people in our society.
If the concern is misuse of funds, then invest in proper oversight, in auditing, in accountability systems. Do not take it out on children who cannot speak and families already stretched beyond their limits.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2457
And then there is this idea that someone’s NDIS plan can be suspended if they are “non contactable.”
I cannot believe that this has even been suggested.
Do you understand what disability looks like in real life? Sometimes people cannot answer calls. Sometimes they are unwell. Sometimes their disability itself is the exact reason they cannot engage.
cannot pick up a phone. He cannot respond to emails. He cannot explain himself.
So what happens then? His supports get cut off? His therapies stop? His carers disappear?
This is not just impractical – it is cruel.
You are effectively punishing people for being disabled.
None of these measures address fraud in any meaningful way. Not one. What they do is create more barriers, more fear, and more instability for families like mine.
I look at and I think about his future. I think about whether he will continue to receive the support he needs to live with dignity.
And I am telling you — this bill feels like you are stealing that future from him.
Balancing a budget should never come at the expense of the most vulnerable.
We are not numbers on a spreadsheet. These are real lives. Real children.
My grandson deserves better than this. His caring family deserve better than this.
We all deserve better than this.
Sincerely,
, A very angry mother and grandmother.