National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026To the Committee,
PLEASE my submission an anonymous submission to NDIS Inquiry without my name or details.
Thank you for the opportunity to provide my experience as an NDIS participant.
I am writing this submission as a person whose life has been profoundly changed by the NDIS, but also as someone who is deeply frightened and distressed about the proposed changes and what they could mean for myself and thousands of other Australians living with significant disability.
I live with multiple permanent disabilities, including a severe neurological condition that causes constant 24/7 stroke-like symptoms, chronic pain, and Deafness. My Deafness is a separate permanent disability. Together, these conditions affect every aspect of my daily life.
Every day I experience numbness, weakness, paralysis, aphasia, chronic pain, balance impairment, foot drop, visual disturbances, communication difficulties, and the additional barriers that come with being deaf. These disabilities impact my ability to safely complete everyday tasks, communicate, access the community, and live independently.
Before receiving the NDIS, my world was incredibly small. I was largely confined to my home, unable to participate in my community, attend appointments independently, or complete everyday tasks safely. Chronic pain and neurological symptoms made even basic activities exhausting, while being Deaf created additional barriers to communication, accessing services, and participating in society.
Tasks that many people take for granted, such as showering, preparing meals, carrying items, attending appointments, or participating in therapy, are impossible without assistance.
Receiving NDIS funding has made an enormous difference to my life. My support workers have given me back some independence, dignity and quality of life.
My support workers assist me with essential personal care because I am unable to shower safely on my own, dress independently, wash and brush my hair, put on my shoes, or prepare my own meals. They support me to attend appointments, participate in essential therapies including speech therapy, access the community, manage communication barriers related to being Deaf and having aphasia, and reduce the isolation that comes with living with permanent disabilities.
Without this support, many of the everyday activities most people take for granted would simply not be possible for me.
However, accessing the NDIS was an exhausting and distressing process. Despite extensive specialist reports and evidence confirming that my conditions are permanent and significantly disabling, my application was denied multiple times. Each rejection meant gathering more
reports, paying for additional assessments, and repeatedly proving the impact my disabilities have on my life.
The process was emotionally exhausting and financially costly. People with permanent disabilities should not have to repeatedly prove that they are disabled enough to deserve support.
Even after gaining access to the NDIS, significant barriers remain.
Assistive technology can take months to access despite being essential for safety, independence and quality of life. I am currently exploring power wheelchair trials because my mobility continues to decline quicly. I also require hearing-related assistive technology to improve my safety and independence as a Deaf person.
Without appropriate supports and equipment, my ability to participate in the community, attend appointments, maintain my health and live independently is severely limited.
I am deeply frightened by the proposed changes to the NDIS. This is not simply a policy discussion for me. This is about my ability to live safely, with dignity, and with any level of independence.
The uncertainty surrounding these proposed changes is already having a serious impact on my mental health. I am struggling to sleep. My anxiety has increased significantly. I am beginning to experience depression again, and I have had panic attacks because of the fear and stress caused by the possibility that the supports I rely on could be reduced or removed.
Every day I worry about what my future will look like if the supports that allow me to function are taken away.
Without my NDIS supports, my life would fall apart.
I would no longer be able to attend the therapies that are essential to maintaining my health and preventing further decline. I would be unable to safely prepare food or even make myself a coffee. I would not be able to safely leave my home without support and would become housebound.
I would become increasingly dependent on others but not have anyone to support me and would spend nearly all of my time confined to bed because I need assistance to get out of bed, dress, and do anything at all that resembles life.
I cannot shower safely on my own. I cannot dress independently. I cannot wash and brush my hair. I cannot put on my shoes. I cannot prepare my own meals. I had to use a software to type this for me.
Without my support workers, I would be left unwashed, unfed, isolated, more extremely distressed and unable to participate in any part of life. The independence and dignity I have fought so hard to regain would disappear.
These supports are not a luxury. They are not optional. They are what allow me to live.
I know I am not alone in these fears. Across the disability community, many people are experiencing enormous distress and fear about what these changes could mean. For many people, their supports are the difference between being able to live in their own homes and being placed in situations where their basic needs cannot be met.
I am deeply concerned about the impact these changes could have on the physical and mental health of people with disability. When essential supports are removed, people risk becoming isolated, unsafe and unable to care for themselves.
The consequences of these decisions are not theoretical. They will affect real people, real families and real lives.
I believe there are several improvements that would make the NDIS fairer and more effective:
Reduce unnecessary reassessments for people with permanent, lifelong disabilities and conditions that will not improve. Make access and funding decisions more consistent. Reduce the administrative burden placed on participants and clinicians. Improve pathways for essential assistive technology so people receive equipment when they need it. Better recognise neurological conditions, chronic pain, invisible disabilities and sensory disabilities that may not always be visible but cause profound functional impairment. Ensure Deaf participants and participants with communication disabilities, including aphasia, receive accessible communication and can properly participate in decisions about their lives. Ensure reforms do not remove essential supports from people who rely on them for basic daily living, safety and independence.
The NDIS has changed my life for the better. I am incredibly grateful for the support I receive. It has allowed me to participate in life rather than simply exist.
But the proposed changes create a level of fear and uncertainty that is already causing harm. My life, and the lives of many other disabled Australians, depend on decisions being made carefully, compassionately and with genuine understanding of what disability looks like every day.
Behind every NDIS participant is a person. A person who wants to live, participate, contribute and have dignity.
I am also deeply concerned about the extreme distress these proposed changes are causing within the disability community. Many people with disability are expressing fear, hopelessness and despair at the possibility of losing the supports that allow them to survive and live with dignity.
I am hearing from people who are frightened about what their lives will look like without essential supports. Some people are experiencing thoughts of suicide because they cannot imagine surviving without the assistance they currently rely on. There are also people
expressing fears that they may consider voluntary assisted dying because they believe they will no longer be able to live safely or with dignity if their supports are removed.
This should never be the situation for people with disability. No person should feel that death is the only option because the supports that allow them to shower, eat, communicate, leave their home, receive care, or participate in life may be taken away.
The purpose of the NDIS should be to support people to live ordinary lives with dignity, independence and choice. Any reforms must consider the very real emotional and psychological impact that uncertainty and potential loss of essential supports are having on participants. The consequences of these decisions are not just financial or administrative; they are about people’s safety, wellbeing and their ability to continue living meaningful lives.
I urge the Committee to listen to the lived experiences of people with disability and ensure that any changes protect the very people the NDIS was created to support.
Thank you for considering my submission.
Yours sincerely,
Terrified participant