Submission 965
Submission to the Senate Community Affairs Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Submitted by a person with lived experience of disability and an active matter before the
Administrative Review Tribunal
Who I am I am a disabled person with direct, lived experience of navigating the NDIS.
I am a 56 year old married woman living with Multiple Sclerosis with no other information supports other than my husband who has his own health issues.
I have no other family.
I have no other friends I can call upon.
This submission focuses on issues where I have both deep personal concern and direct experience
When this government came to power, the disability community was promised a new dawn.
I was excited that Bill Shorten was back where he belonged. One of the trio who initiated the NDIS dream.
What followed instead was a blitz of reform after reform, each arriving faster than the community could process, each demanding response under impossible pressure. The first NDIS review consultation gave us insufficient time.
The second did the same.
This Bill continues that pattern without shame or acknowledgement.
As a person with a DEGENERATIVE, LIFELONG, SIGNIFICANT PERMANENT
DISABILITY, it concerns me that the government is assuming that I will “get better”!!
NDIS planners assume I will “get better” and have even added to my plan “Liisa’s supports will reduce over time due to capacity building supports”!!!
They do NOT understand the word “DEGERETIVE”.
Capacity building will not cure me. What it will do is keep me stable, living in my home and help me retain some dignity in order to live my life with some level independence.
To be honest I don’t think I’ve ever seen the word DEGERETIVE mentioned on the NDIS website or anywhere in any documents released by NDIS/NDIA.
This is concerning.
I have therapies such as Physiotherapy, Occupational Therapy to help me retain a baseline that gives me some semblance of “independence”.
Submission 965
I am reliant on assistive technology to move around in this world. Without it I sit or lay any watch! I am forgotten.
I will wither away.
A power wheelchair, and a walker are a constant in my life.
I am attached to them. They are a part of me.
If I am not to get the current level of physiotherapy and occupational therapy to retain a baseline, I will progress further, deteriorate faster and the risk is that I will end up in hospital. Becoming a “burden” on an already overwhelmed Health service!
I am eternally thankful to the NDIS for listening to my specialist therapists reports of my needs and providing me with the above-mentioned assistive technology.
I also receive home supports as I am not physically able to keep my own home clean anymore which can result in an unsafe environment for me.
I too need assistance to get out into the community. To feel the sun on my face, be seen as a “real person” who will wheel to my local cafe with my support worker where I MYSELF will buy us both a coffee.
I again am eternally thankful ounce again that my last NDIS planner took the time to read my therapist reports and Functional Capacity Assessment and listen to them.
Please don’t let our independence be governed by a “tick and flick” Support Needs Assessment process and for that said assessment to be fed into “automated planning and budget tools” to spit out our future.
Issue 1 :
Automated decision-making without adequate safeguards
Schedule 3 Governance statements Part 2 of the Bill allows significantly greater use of automated systems in NDIS administration and decision-making. Under current arrangements, participants can generally understand the reasoning behind their plans through engagement with human planners. This Bill moves toward a model where decisions affecting disabled people’s lives may increasingly occur through automated processes, with reduced human oversight and limited ability to challenge outcomes.
This is deeply alarming.
We have already seen, through the Robodebt scandal, what happens when government automated systems are trusted to make consequential decisions about vulnerable people without sufficient transparency or accountability. The disability community cannot afford to repeat that experience.
People with communication barriers, cognitive disability, or limited advocacy support are least able to navigate opaque automated decisions and most likely to be harmed by them.
Submission 965
There is a deeper principle at stake here too. Automation must not preclude our input. When systems make decisions about disabled people’s lives through hidden criteria and algorithmic logic, the practical effect is to remove us from the conversation entirely. We cannot meaningfully participate in decisions we cannot see, question, or influence. A scheme that automates away our voice is not a scheme built for us it is a scheme built to manage us. That distinction matters enormously.
I ask the Committee to require that any use of automated decision-making in the NDIS be subject to: mandatory human review rights, full transparency about the criteria and data sources used, independent auditing, and accessible dispute pathways for all participants regardless of their communication needs.
But dispute pathways, while essential, are not enough on their own. They are a remedy after harm has occurred.
What the community needs is genuine co-design embedded from the very beginning of the process starting at the planning meeting itself.
A participant should be an active author of their plan, not a recipient of one. And before any plan is approved, the participant should be required to sign off on it.
I am aware this will be resisted as impractical or costly. I put it on the record anyway, because it is right. A scheme that approves plans about people without their agreement is not person-centred. It is administrative convenience dressed up as support.
Issue 2:
Access and planning measures
Part 1 — Defining functional capacity
I have a DEGERETIVE disease. Multiple Sclerosis.
I will never get better.
Why do I have to constantly EVERY plan, tell someone that “I still can’t use stairs”
“ I still can’t go to the toilet without some assistance from my husband”
“ I still can’t walk outside my home”
“ I still need assistance to leave my home to go out into the community safely”
“ I still can’t wipe my own bottom!”
Every…
Plan!
This is dehumanising and leaves me broken.
Submission 965
It’s a constant reminder that NDIS don’t listen nor understand every “Tick Box’ this time will be THERE SAME!
I will never get better.
I can only work with what I’ve got and the shorts over been given to live an independent life as best I can.
I understand that functional capacity must be defined to design assistance and supports.
But please understand my condition. Please.
I don’t need to do this every plan.
This is causing harm!
Conclusion
The NDIS was, and still can be, something extraordinary a world-leading model of inclusion, one that recognises that investing in disabled people pays dividends for all of society. Research consistently shows that every dollar invested in disabled people returns more than two dollars to the broader economy.
The scheme’s original vision was built on the understanding that disability is shaped not only by impairment but by inaccessible systems, poverty, discrimination, and exclusion.
This Bill sadly moves away from that vision.
While I understand that the scheme may have become somewhat unsustainable… Don’t punish those of us who have lifelong significant permanent disabilities that will never, ever, ever get any better.
Even where the Committee cannot fault the content of specific provisions, I urge you to act on the process. Extend the consultation period.
Gain genuine co-design before further reforms proceed. Demonstrate through your actions that this government means what it said about a new dawn for disabled Australians.
Submitted by a person with lived experience of disability 24 May 2026