National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1880
Before engaging with the NDIS, I struggled my way through a bachelor degree in psychological science with the hopes of becoming a psychologist and the goal of helping people. Secretly, I also yearned to understand why I couldn’t perform to the same level as my peers. Why couldn’t I work and study without having days taken from me due to exhaustion? Why was I hyperventilating in the bathroom of the bar where I work when the music was too loud? Why would a trip to the shops on public transport make me crave a nap? Answers to these questions wouldn’t come until 2023 when I sought out a cognitive assessment to try to find understanding of myself and my struggles.
For the low low price of $4,000, I discovered a diagnosis of ASD level 2, ADHD mixed presentation, and C-PTSD. At that point, I had roughly 1 in 7 days that I could be productive (i.e. carry out self care tasks, like showering, eating, cooking, laundry, go grocery shopping, etc.), with the rest spent recovering from said productivity. Food was a burdensome necessity of which I loathed to meet, so often I would wait until I was on the verge of passing out before reluctantly ordering sustenance from somewhere cheap and quick. Washing myself, laundry, cleaning - all became Sisyphusian tasks, a boulder pushed up the hill only to roll back down again to be hauled up again. I could not keep a job so there was no viable way for me to make money so I could seek treatment and work towards a better quality of life, so I tried everything available to me in my limited means. Every year, I have gotten a mental health care plan from my GP and received the standard 10 sessions, very little of which made any meaningful change for me because 10 sessions is not adequate to address the deep seeded trauma I’ve survived, and I did not have the means to pay for extra sessions to address my disabilities.
As it stands, I am a newer participant on the NDIS, and I am on my second plan. My first plan included psychology funding along with occupational therapy to complete a Functional Capacity Assessment, along with support workers for community access and assistance in the home. I completed the FCA but was unable to complete a follow up with my psychologist due to a lack of funding. My second plan was initiated without my consultation, as I was out of the country due to the loss of a family member, and my plan has limited my access to psychology, justified under the “not relevant to disability“ and “not value for money” rejection clauses. If I could have accessed psychology and occupational therapy with my own money, I would not have needed to access the NDIS. If I had literally any other choice, I would have taken it. As it stands, I have limited access to capacity building supports such an OT or a psychologist. I have enough funding to complete a follow up FCA and maybe a handful of sessions to actually work on capacity building. I am doing what I can with what I have, but there is only so much I can do individually. I use my plan sparingly and only as necessary to maintain and steadily increase my capacity to leave the house and do things outside of the home, like seeing my friends.
Since joining the NDIS, I have gone from leaving the house once a fortnight for groceries to leaving the house multiple times a week for groceries, and working on controlling the feeling of being a fox around a loaded gun when I’m away from the safety of my home. Sweat pours out of me in public spaces, my heart races, my breathing gets heavy, every little mistake feels like a 10 step countdown to a catastrophic meltdown. Other days, the fuse is longer, yet shorter on others. Some days, the good days, the fuse is much, much further away. But it’s a gamble every morning when I wake. Will today be good? Will I finally get my list completed for the day? Did my knee sublux in my sleep? Will my body hurt a little, so I can be productive? Or will my body
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1880
feel like a bruise and my breath wheeze because I pushed myself too hard by doing laundry AND grocery shopping in one day? Pull the lever, roll the dice, raise the stakes - it’s a gamble (even writing this has been a struggle). However, I find myself here writing this at dark o’clock the day before the cut off of this inquiry because I saw no information about it until yesterday.
The information around the legislative changes has been vague, fear-inducing, and hard to find. Everywhere, information about 160,000 participants kicked off NDIS so the government can tackle fraud. But kicking 160,000 participants off NDIS sounds like it’s targeting the disabled community rather than fraudulent service providers. The disability community is unique in that anyone at any time can become part of our minority community. Be it due to workplace accidents, old age, or car crash, someday all of us will experience disability in some form. Loss of functionality isn’t something I would wish on anyone, but it is an inevitability. I lost my ability to function because my invisible disability made me “quirky“ and “weird” so I could hide in plain sight and struggle in silence. I refuse to stay in silence, so I will heal loudly. Truthfully, I have no idea what comes next for me as an NDIS participant and the thought of the future terrifies me, like a struggling animal caught in a snare. I fear for other people in the disability community, for their safety and wellbeing, just as I fear for my own. In the foreseeable future, I know that feeling of helplessness and despair will drown some and snuff out their lives, and the shadow will always hang over me. These changes made by men and women free of disability will affect hundreds of thousands of lives, lives that can be saved by access to the NDIS. Without it, you may as well be leaving a disabled baby on the window sill for a “humane” death like they did in the old. You may as well put us in hidden rooms like they did in the old days. You may as well lock us up in asylums like they did in the old days. You may as well write off disability entirely as a defect rather than an accepted difference. Do we really want Australia to regress instead of progress? Do we really want Australia to follow in the regressive footsteps of America?
In conclusion, legislation around the NDIS shouldn’t be up to abled people who have no experience of disability. If you haven’t lived it, you don’t know how much harder life is when you are disabled. And I hope when disability arrives on your doorstep, I hope the advocacy of those who came before you grants you the support you need.