National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 116
I am in pain. I cannot change that fact. My condition is permanent and untreatable, and it means I will be in tremendous pain, every day, for the rest of my
life. There is no surgery, no drug, no amount of exercise that will change that fact. I have tried everything.
NDIS access for me would mean being able to work. Being able to leave my house. Doing laundry again. Seeing my friends. Eating more than one meal a day
because cooking is just too damn exhausting. And maybe. Just maybe. A little bit less pain. And you are trying to take that away from me.
The system is already broken. You and I agree on that point. My most recent
rejection says I have not tried yoga, and that therefore my condition may not, in fact, be permanent. The barrier to access is already sky high. Out of reach for most of us
who have to pay for things like rent and food on a budget stretched tight by medical expenses and the fact we can barely work because we have no support. And you are
specifically trying to tighten the definition of permanence. What do you think my next rejection letter will say, if you pass this bill? Perhaps I need to try a more
positive attitude. Perhaps I need to find a way to rewrite my genetic code and alter the core building blocks of my body.
I cannot work. I cannot wash myself alone. I cannot get food for myself. I cannot leave my house because of stairs. But according to the NDIS I am not disabled
enough. There is a gulf a mile wide between what disabled people need and what we get. And you are voting to widen it.
The current system rejects the fundamental truth of our bodies. That we are
and always will be disabled. You reject us and accuse us of trying to rort the system because we have not tried yoga. When the truth is we try. We want to be
better. In less pain. More independent. More able to participate in society. You assume we are greedy. That we would rather bleed the government than do anything
that could change our circumstances. Is wanting a little bit less pain really so greedy?
Because I have, actually, tried yoga. I dislocated my neck. I have tried
swimming. I couldn’t leave my bed for a week. I have tried birth control and drinking
water and having a positive attitude and so much ibuprofen my guts stopped working. The fact has not changed; I am still disabled. This is true of every single
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 116
chronically ill person—if there was a hack that meant I do not need NDIS support I would have taken it years ago. Unfortunately for all of us, that ‘’hack’’ is to be richer
than Midas. Why are you trying to create a system where only the already wealthy can get help and the everyday Australian has to suffer?
“Nothing about us without us.” I’m sure you’ve heard that before. Probably from a lot of other submissions here. It is a pretty core piece of disability justice. One
you have completely neglected. Where are the disabled people you have consulted on these changes? Where are the disabled people you consulted? Where are the round
tables and community input and the clear communication of the plan? I certainly
can’t find it. We already know you don’t listen to doctors, or the processes of accessing the NDIS and getting plans approved wouldn’t be so damn complicated.
So, who are you listening to? Who are you communicating with? Because all I can find is speculation, and lies about paying for haircuts, and press releases that explain
nothing.
Because the disabled community has been pointing out the flaws in the NDIS
from the very start. We’ve got some pretty good ideas about where good places to
save money are. You have just refused to listen. The NDIS wastes so much money just by being too complex and bureaucratic. If you want to make changes start there,
not by demonising disabled people for existing. The complexity means no one can keep track of their plan, so it gets drained by unscrupulous operators. It means you
can only buy from specialist disability suppliers who up the charge 10 to 20 times because they know we can’t go elsewhere. It means that the support you give people
isn’t fit-for-purpose and we get worse and need more help in the long run. Instead of
working with us to fix the source of some of these problems you are stripping money and support away from people who need it to live.
Why not use me as an example? I hit the Medicare safety cap in February. Last year I hit it in April. You have spent thousands on me going over and over to doctors
and specialists and on care plans as I try to prove I need help. My claim has gone through a dozen or so different people, and when it goes to tribunal it’ll go through a
dozen more. How much money do you pay them? How much for the lawyers that are fighting me? And if I get rejected, which your changes make so, so much more likely.
I will have to start again. How many thousands could you have saved just by listening
to the doctors that you pay for? Even a few thousand, multiplied by 700,000 people
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 116
on the NDIS is a hell of a lot more than a billion dollars. Multiply by the 4.4 million people in Australia with a disability? That’s a pretty huge chunk of savings.
When I first applied for the NDIS I needed better knee braces and some physio. Today I need support workers to help me shower and eat and drive me
places, therapy to deal with the that is the complete loss of independence, and a wheelchair which costs more than a car. Oh, and I still need better knee braces
and some physio. Everyone knows that not fixing something when it first breaks is more expensive. You could find most of your $10 billion in savings helping people
where they are instead of waiting for them to get worse.
Same with plan reviews. You pay hundreds if not thousands for a doctor or an OT to assess someone and come up with a care plan. Then make them wait months
and months and fight through multiple levels of review only to reject them. And then the participant needs to spend even more NDIS money to replace the now-expired
care plan and in the meantime is continually getting worse because of the gap in care, only for them to eventually get the new care plan approved. How many thousands do
you spend? And how much of that goes to lawyers charging $700 per hour, with no
medical background, trying to say a doctor is wrong? And within a year the plan must be reviewed again. Again, multiply this process by yearly reviews for 700,000
participants, how many billions could you save just by simplifying the system.
It doesn’t make sense. Unless you believe that the whole point is to make us so
exhausted and traumatised that we can’t keep fighting. I don’t want to believe that of my own government. Because for me, and for a lot of other disabled people, giving up
means getting worse.
I want every single one of you to look me in the eye and say I deserve to be in pain. To repeat that for every single 4.4 million disabled people in Australia, and tell
us we should be scared. We should be confused. We should be exhausted. That showering, eating, and getting out of bed. That these are all luxuries that we don’t
deserve. Because that is what you are voting for—for people like me to be left in our filth, in homes we can’t leave, until we die.
You know these cuts are wrong. If you didn’t then you wouldn’t be trying to
take away our right to appeal through the courts. The NDIS was once a national pride! Yes, it is expensive. But that is a cost that a moral country pays to make sure
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 116
all of its members are taken care of and have a decent quality of life. We used to be better than this. If you work with disabled people to make the system better we could
be again.
I just want to live. Why are you taking that away from me?