Submission Regarding Proposed Changes to the NDIS Act
Introduction
My name is . I am 37 years old, a wheelchair user, a person living with multiple permanent disabilities, and a Doctor of Veterinary Medicine student at Adelaide University. What is perhaps most frightening about my story is that I was not born disabled. Until 2015, I was healthy, independent, employed, and building a future for myself. Then a seemingly mild and unexpected viral infection pushed my body over the edge. What followed was a devastating downward spiral of illness, disability, and loss. That initial illness ultimately led to the development of multiple chronic medical conditions and permanent disabilities that took away my thriving career, my independence, my financial security, and nearly a decade of my life. This could happen to anyone. Disability is not something that only happens to other people. One illness, one accident, one unexpected turn in life can permanently alter a person’s future. Today I live with multiple permanent disabilities arising from chronic conditions including
Sjögren’s Syndrome, Fibromyalgia, Peripheral Neuropathy, Scheuermann’s Disease, Trigeminal
Neuralgia, Idiopathic Intracranial Hypertension, Dysequilibrium, Anxiety and Depression,
Endometriosis, Polycystic Ovarian Syndrome (PCOS), Eosinophilic Oesophagitis, Chronic
Migraines, Cluster Headaches, Vestibular Migraines, and Obstructive Sleep Apnoea. Managing these conditions requires a vast array of medications, specialist appointments, treatments, therapies, equipment, and physical interventions. It is often said that living with disability can feel like a full-time job. For me, that is not a metaphor. It is the reality of my daily life. Yet despite all of this, NDIS supports have transformed what is possible. Every day has become a blessing. Every opportunity to study, participate in the community, work toward my goals, and build a future feels like a gift that I genuinely never thought I would have again.
What does the NDIS mean for me right now? The NDIS means independence. It means being able to leave my house. It means being able to attend university. It means being able to pursue a career. It means having a future. For many years I lived with significant disability but without access to the NDIS. It took approximately four and a half years of reviews, appeals, legal processes, and court proceedings before I was finally granted access. During that time my health continued to decline while I attempted to survive without appropriate support. At my lowest point I became largely bedbound. My entire goal for the day was simply to feed my dogs. Basic hygiene became a luxury. There were periods where showering every day was impossible and I would only manage basic personal care every two or three days because I simply did not have the physical capacity. The wheelchair I depended on was literally being held together with duct tape and replacement bolts purchased from Bunnings because I had no access to funding for suitable equipment. To afford that wheelchair, I used virtually my entire JobSeeker payment while still trying to pay rent. As a result, my diet for more than a month consisted almost entirely of two-minute noodles and porridge because that was all I could afford. People often talk about luxuries without understanding how relative that word is. There was a time when the ability to shower every day was a luxury. Today, fresh fruit is a luxury. Fresh meat is a luxury. Running a heater in winter is a luxury. Before the NDIS, I had already lost nearly a decade of my life to the health spiral that followed my initial illness and the development of my permanent disabilities. The NDIS finally gave me access to supports that recognised the reality of my disabilities rather than forcing me to continually prove that I was disabled enough. The NDIS is not making me independent from my disability. It is helping me be independent despite my disability.
How do I feel about the proposed changes to the NDIS Act? I am deeply concerned, actually, afraid would be a better word.
I understand the need for the NDIS to remain sustainable. Every Australian wants a system that will continue to support future generations of people with disability. However, I am worried that many of the proposed reforms appear to focus primarily on reducing expenditure rather than understanding the real-world consequences for participants. When governments discuss reducing supports, they often discuss numbers on a spreadsheet. What I see are the practical consequences:
- Students forced to abandon their education.
- People losing access to employment.
- Increased reliance on unpaid carers and ageing family members.
- Increased social isolation.
- Greater long-term healthcare costs.
- Reduced independence and quality of life.
- Increased pressure on already overwhelmed public health systems.
- Increased hospital presentations and preventable health complications.
- More disabled Australians becoming trapped in poverty.
- Reduced workforce participation by both disabled people and their carers.
- Increased housing insecurity and homelessness.
- Loss of educational opportunities for disabled Australians attempting to build a future. The NDIS should be measured not only by what it costs, but by what it enables people to achieve.
Do I feel these changes have been explained clearly enough? No. Many participants still do not understand exactly how the proposed changes will affect them. I have personally taken time away from my university studies to read through the proposed legislation and supporting documents in an attempt to understand what is being proposed. Without sounding arrogant, analysing complex government documents is something I genuinely enjoy. My academic interests include biosecurity and disaster management, and I regularly engage with complex legislation, policy documents, and regulatory frameworks. If I cannot make sense of these proposed changes, how can the average Australian be expected to understand them? The uncertainty created by these reforms has already caused harm within the disability community. People are frightened. Many of us remember what disability support looked like before modern disability rights reforms. We do not want to return to a system where disabled people are hidden away, institutionalised, or denied the opportunity to participate in society. Some people I know personally, whose disabilities are significantly more severe than my own, have seriously discussed Voluntary Assisted Dying because they genuinely fear what their future will look like if critical supports disappear. That is the level of fear and uncertainty these proposals have created.
What would these changes mean for me, my family, friends, carers, and the broader community? There is no hidden reserve of support waiting to step in if my NDIS supports are removed. My parents are in their seventies. They spent their lives performing physically demanding manual work and their bodies are no longer capable of providing the level of physical support that I require. My brother has served in the Australian Army for more than fifteen years. He is serving our country and cannot simply leave his responsibilities to become my carer. Beyond that, there is nobody else. Years of being bedbound and housebound destroyed many of the friendships and social connections that most people take for granted. It is only through increased participation and support that I have begun rebuilding those relationships and reconnecting with my community.
The Disability Support Pension also creates barriers to financial independence and relationships. Disabled people can face financial penalties for forming long-term relationships, creating situations where financial dependence may increase vulnerability and reduce personal autonomy. Independence is not merely about money. It is also about safety. The broader community would also lose. I am currently studying veterinary medicine. Australia faces workforce shortages in many professions, including veterinary medicine. The supports I receive today are helping me work toward becoming a skilled professional who can contribute to society, pay taxes, support communities, and help address workforce shortages. Reducing supports may create short-term savings while creating far greater long-term costs.
What would happen if my social and community supports were reduced or removed? Social and community supports are often misunderstood as luxuries. For people with disability, they are necessities. Without these supports I would become increasingly isolated from my community and from the relationships that give life meaning. My mental health would suffer. My confidence would decline. The progress I have made rebuilding social connections after years of isolation would be placed at risk. Social isolation is not a minor inconvenience. It has profound consequences for mental health, physical health, community participation, and quality of life.
What would happen if my capacity-building supports were reduced or removed, or if I never had access to them in the first place? Capacity-building supports are some of the most important investments made through the NDIS. These are the supports that help people improve function, develop skills, increase independence, and reduce future reliance on support. When I first entered the NDIS, I could stand with support for approximately three minutes before experiencing significant physical consequences. Today I can stand unaided for approximately four minutes and stand with support for around seven minutes. To many people, that may sound insignificant. To me, it is enormous. That improvement represents years of effort, persistence, therapy, and capacity-building supports. My long-term goal is to walk twenty metres unaided. To stand unaided for ten minutes. It is an ambitious goal. I may never achieve it. But capacity-building supports give me the opportunity to try. Without them, improvement becomes impossible. Without capacity-building supports I would not be studying veterinary medicine today. I would not have developed the strategies, adaptations, and functional gains that allow me to participate in higher education despite significant disability. Reducing these supports would not increase independence. It would reduce it.
What would the proposed changes to the definition of permanence mean for me? This is one of my greatest concerns. Many disabilities are dynamic disabilities. They fluctuate not only from day to day, but sometimes from hour to hour or even minute to minute. A good hour does not mean a good day. A good day does not mean recovery. A period of improvement does not mean a disability has ceased to exist. I am deeply concerned by any interpretation of permanence that assumes functional improvements achieved through support somehow prove that a disability is no longer permanent. Equally concerning is any suggestion that people should be forced into invasive treatments simply to maintain eligibility for support. The idea that a government agency could effectively require me to undergo another highly invasive brain surgery merely to satisfy an administrative test of permanence is, in my view, deeply unethical. My disabilities are permanent. The medical conditions that caused them are chronic and lifelong. By medical definition, chronic conditions are those lasting longer than six months. Mine have lasted
years and continue to impact every aspect of my life. Even with gold-standard treatment plans, specialist care, advanced therapies, and a great deal of luck, my disabilities will not disappear. Support helps me function better. Support does not cure me.
Conclusion
The NDIS transformed my life. Before the NDIS, I had already lost nearly a decade to illness, disability, and survival. Today I am studying to become a veterinarian. That change did not happen because my disabilities disappeared. It happened because somebody finally gave me the tools I needed to succeed. The greatest cost of cutting the NDIS will not be measured in budget papers. It will be measured in lost human potential. Because if you do not give people the tools they need to succeed, they never even get the chance to try. I am studying to become a veterinarian today because somebody finally gave me that chance. How many future doctors, teachers, engineers, scientists, nurses, carers, artists, researchers, tradesmen, and community leaders will never get that opportunity if those supports disappear? That is the real cost of getting this wrong. That is the cost that can never be recovered.