NDIS Participant Submission
My name is . I am a disabled woman, a sister, an artist, a small business owner, a friend, and an NDIS cipant.
My experience with the NDIS has been both life-changing and deeply traumatic. Accessing the scheme, navigating endless bureaucracy, dealing with misinformation, ableism, and harmful or fraudulent providers has often felt like a battle. While the NDIS has given me opportunities I never thought were possible, it has also caused significant stress and trauma through the way the system operates.
Despite those challenges, I can say with certainty that the supports funded through the NDIS have saved my life.
Before I had access to the NDIS, I attempted to end my life three times. I was placed under a 72 hour mental health hold and spent months in psychiatric hospitals. I simply could not afford the support I desperately needed. Living as an autistic person without appropriate support became so overwhelming that I believed death was my only option.
I have clear and conclusive evidence that shows the NDIS is the reason I am still alive today. Before I had access to these supports, I attempted to end my life three times. Since receiving consistent support through the NDIS, I have not attempted to end my life once, nor have I required another psychiatric admission.
This is not because I am ‘less disabled’ today. I still experience severe autistic meltdowns, suicidal ideation, sensory overwhelm, and significant daily impairments. The difference is that I now have the right supports around me to help me navigate those moments safely. Those supports are only available because of the NDIS.
When people say the NDIS saved their life, they are not exaggerating. I am living proof of that.
The proposed changes to the NDIS terrify me. As an autistic person, I have watched the public conversation increasingly portray autistic participants as people whose supports should be reduced or removed. These supports are not luxuries. They are essential.
There are days when I cannot get out of my dark bedroom. I sit crying, shaking, struggling to breathe as my nervous system becomes completely overwhelmed. During those moments, I cannot simply “push through” or decide to function.
Without my support workers, I would not eat on those days. They help prepare meals, make sure I take my medication, and support me through the everyday tasks that become impossible when I am in crisis. They do not make my disability disappear, but they stop a terrible day from becoming a tragedy.
If these supports were taken away, I would not simply become less independent. I would become unsafe.
I have very limited informal supports. My father has passed away. My mother lives several hours away and, due to her own circumstances, is unable to provide the level of support I require. My sister is my greatest source of informal support, but she currently lives in London. The fact that someone living on the other side of the world remains my primary informal support demonstrates just how heavily I rely on funded supports in my day-to-day life.
If my current supports were reduced or removed, I would struggle to care for myself. Both I and my treating team believe there is a very real likelihood that I would end up back in a psychiatric hospital because I would no longer have access to the supports that currently help me on a regular basis.
Hospitalisation is far more expensive than providing community-based disability supports, yet these proposed changes risk pushing many people into crisis before help becomes available.
My social and community participation funding allows me to access support workers who assist me with everyday tasks that many people take for granted. They drive me to appointments, help me attend essential errands, support me with grocery shopping, assist me in managing my schedule, provide me with social interaction and help me safely participate in my community.
Without this support, many of these tasks simply would not happen. These supports are not about convenience. They are about allowing me to function, maintain my independence, and remain connected to my community.
My capacity building supports have been equally life-changing.
Occupational therapy has helped me understand how my autistic brain works. It has taught me about sensory regulation, nervous system regulation, recognising burnout, understanding meltdowns, and developing practical strategies.
Perhaps most importantly, occupational therapy has helped me understand why I experience suicidal thoughts during severe autistic meltdowns. Having this understanding has allowed me and my support team to put strategies in place that keep me safe.
Regular psychology has allowed me to begin processing a lifetime of trauma.
Like many people who receive a late autism diagnosis, I spent years being misunderstood and misdiagnosed. I now live with Complex PTSD, Major Depressive Disorder, Generalised Anxiety Disorder, and an eating disorder. Much of this developed because I spent years without appropriate disability supports.
Recovery from decades of trauma is not something that happens quickly.
There have also been times when I have experienced acute suicidal crises. During those periods, being able to access emergency psychology sessions through my NDIS funding has been critical. Those sessions have helped me safely navigate some of the darkest moments of my life, and I genuinely do not know whether I would have been able to survive those crises without them.
My occupational therapist has also helped improve my relationships, particularly with my sister. I struggle to make friends and have very few friends. However, I now better understand the communication differences between autistic and non-autistic people, and I have learnt skills that allow me to maintain relationships that previously felt impossible.
These outcomes are exactly what capacity-building supports are designed to achieve.
The proposed changes concern me because they fail to recognise the complexity of disability. People cannot simply separate autism from every other part of our lives. Autism affects how I process emotions, regulate my nervous system, experience pain, communicate with others, recover from trauma, exist in the workforce and participate in society. Every qualified professional involved in my care understands that these experiences are interconnected.
My chronic pain, mental health, communication, sensory regulation, and overall wellbeing cannot be neatly separated into different systems simply because legislation says they should be. The reality of disability is far more complex than that. This is shown in medical evidence.
Since receiving appropriate supports, I have slowly built a small creative business around my artwork. I now contribute to society through my work, pay taxes, and continue building a life that once felt impossible.
Like anyone else, I want financial stability. I want to know I can pay my rent, afford the medications I rely on every day, and not constantly fear becoming homeless. I want a life that is about more than simply surviving.
I want to build a life where I can experience moments of joy, purpose, and happiness, just like any non-disabled Australian.
The NDIS has given me the opportunity to work towards that life. It has not removed my disability, but it has given me the support I need to participate in my community, pursue meaningful work, and build a future that feels worth living.
The success of the NDIS should not be measured solely by how many people leave the scheme. For participants like me, success is measured by staying alive, staying out of hospital, remaining connected to my community, and having the opportunity to build a life that feels worth living.
Reducing or removing these supports would not make me more independent. It would take away the very foundations that allow me to keep moving forward.
I understand that the NDIS must be financially sustainable. I understand that reform is necessary. However, balancing the budget should never come at the expense of the lives of disabled Australians.
One of the greatest inefficiencies I experience is the amount of funding consumed simply proving that I am still disabled. At the end of each plan, I require extensive reports from multiple providers to justify continued access to supports. For example, my Functional Capacity Assessment alone is expected to take between 10 and 20 hours to complete. That is almost my entire annual allocation for occupational therapy.
In other words, I must sacrifice a year of treatment simply to prove I still qualify for treatment. That funding could instead be spent building my capacity, improving my functioning, and helping me continue making progress.
The Government has spoken extensively about reducing costs. I urge you to focus those efforts on eliminating fraud, improving oversight of providers, and reducing unnecessary administrative burdens placed on participants, rather than reducing the supports that disabled people rely on to survive.
Three years ago I could never have imagined running my own small business. Today, because of the supports I receive through the NDIS, I hand-make ceramics that are sold across Australia, I pay taxes, and I contribute to my community. My business hasn’t removed my disability, but it has given me purpose, connection, and a reason to keep planning for the future.
I would like to finish by asking one simple question.
If you, your partner, your child, your parent, or your best friend became disabled tomorrow, would you want a system like the NDIS to exist?
Would you be able to afford the thousands of dollars required for psychology, occupational therapy, support workers, assistive technology, medications, and ongoing healthcare without it?
Disability does not discriminate. It can happen to anyone.
Every Australian deserves the dignity of knowing that if disability becomes part of their life, there will be a system that supports them to live safely, participate in their community, pursue their goals, and have hope for the future.
The NDIS has given me that hope.
Please do not take it away.