National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1082
Submission to the NDIS enquiry.
In 2018 I was diagnosed with st4 renal carcinoma (terminal). In 2019, I underwent high dose radiation which set off a rare neuropathic pain in my rib. To hopefully mitigate the pain, I attended a day surgery to “turn off” the one troublesome nerve. Instead of solving the issue, I was instead paralysed. I now have an incomplete spinal cord injury. I am paralysed, unable to walk and permanently in a wheelchair in unbearable neuropathic pain.
I am a person who has always preferred my own company and have always lived alone. Because of the many horrendous experiences I had in hospitals, I now have complex PTSD.
In order to continue to live in my house and maintain the limited amount of independence I currently have, it is crucial that I do physiotherapy with a qualified therapist that I trust. I am concerned that these new changes to the NDIS will remove or limit my physiotherapy. If this happens I will lose the remaining strength in my core and leg and I will end up in a nursing home (my worst nightmare and I’d rather be dead). I have maintained a hope that serious unending pain would become a reason to enable me to use voluntary assisted dying but so far, I don’t qualify.
I spend most of my life in bed, getting up 3 times per week to exercise with my physiotherapist and then gaming on a PlayStation (a new pursuit I have taken up since becoming incapacitated.)
I rarely leave the house because finding support workers I trust enough to take me, in a small rural town has been problematic. Occasionally, when he has spare time, my physio takes me for a drive so I can see that life still exists outside the confines of the 4 walls of my house. I dream of getting out more and would hope that the NDIS would enable this but the new changes seem to be keen on removing or limiting this fundamental human right.
I am still waiting for my bathroom to be modified and have not showered for over a year because finding an occupational therapist with spinal cord injury experience in a small rural town has also been problematic. I also need a new wheelchair because my abilities have changed over the past 7 years, but again, I need an ot and access to trial wheelchairs.
I always owned dogs but now cannot offer them a good life on my own. I live in hope that I can find a support worker who can help me with this dream that able-bodied people take for granted (I did!)
Please don’t take away the last vestiges of my individual humanity by removing therapies and making me rely on AI to decide what I am “entitled” to. I have always been extremely careful with my NDIS spending, negotiating hourly rates with therapists and sw’s. I understand fully that this is hard-earned, taxpayer dollars. I worked for 40 years and would want my taxes to support disabled folk to have the best life possible.
I strongly suggest that you reduce the max rates for much of the NDIS because I think that’s the main cause of the blowout in the NDIS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1082
Please keep NDIS sympathetic to us as individuals and don’t start relying on “formulas” to decide what we need and deserve to live the best life possible given that our suffering is real.
Thanks for your time.