Submission 2696
A submission on the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Submitted to: Senate Community Affairs Legislation Committee
Submitted by: , Balmain NSW 2041
Date: May 2026
SUBMISSION:
Like the vast majority of NDIS participants and their careers, I don’t have the skills to write a formal submission. And unlike Senators of this Chamber I don’t have the funds to employ someone to do it for me. Instead I’m pouring my heart to you through my family’s lived experience to give you a little glimpse into our lives and what the proposed to Bill NDIS cuts will mean for us. So I’m asking you to read this with an open heart and mind, and for an instance just try to put yourselves into our shoes. And just for a moment don’t see us as numbers on a balance sheet, but see us for what we are - Australians - fellow human beings just like you and your loved ones - only with additional needs trying our best to live dignified ordinary and productive lives
I am a 67-year-old cancer survivor living with multiple serious health conditions, including heart disease, severe arthritis, chronic back pain and muscle spasms, for which I have been hospitalised, as well as chronic depression. I am also the sole carer for my 45-year-old son, , who lives with an intellectual disability and severe anxiety disorders, including debilitating panic attacks.
When the NDIS was introduced it was one of the happiest days of our lives. It gave us hope. For the first time, I could imagine a different future — a productive life, a safer life for , and a life that felt less frightening.
Please hear us out before rushing changes to the NDIS.
needs support with most daily living activities, including:
- Preparing food
- House cleaning and maintaining hygiene
- Washing and laundry
- Personal self-care
- Time management, including getting ready for work
- Transport to and from work and activities
- Weight management, fitness, and diet education
- Therapy for balance and posture
- Psychological support for anxiety disorders and meltdowns
- Medication administration
- Attending medical appointments I agree that any changes to the NDIS must ensure the scheme remains sustainable. But for families like ours, these proposed “savings” are not simply budget measures — they are cuts that would make our lives unsustainable.
Submission 2696
When father died a few years ago, it was the support provided through the NDIS that helped us survive that devastating time. It was support team who had the necessary skills that helped him greatly deal with trauma and grief. I couldn’t do that, I’m neither skilled or had the energy to do that. I was just a parent trying my best and I was exhausted from grief and pain myself. I couldn’t get out of bed, how could I support my son? If it wasn’t for his support workers what would he have survived??
I am a cancer survivor with heart disease, and my cardiologist advises me to avoid stress. These proposed changes cause me enormous stress and fear, which directly impacts my health. The NDIS proposed cuts might reduce spending in one government department, but the costs do not disappear. They are simply shifted elsewhere — into the health system, hospitals, mental health services, and emergency care. So for our family we go back to what was routine for us, revolve around hospitals and mental health facilities and emergency departments. It’s simply terrifying.
The NDIS has had an enormously positive impact on life. It has enabled him to work, study, volunteer in the local community, participate in health and fitness groups, and build genuine connections and relationships in the community and people who know him, value him, and understand and accommodate his needs. He no longer is known as “ ’s disabled son“ - people now know and call him by his name. The NDIS supports have helped create the means for my inclusion, dignity, and belonging. If funding is cut, all of this is at risk of being undone. And that in return helped his emotional and mental health.
My son and his support team, and I have worked incredibly hard to build a life where can participate meaningfully in the community. Inclusive communities do not happen by accident. They take years of effort, understanding, and support to build. It is heartbreaking to think this progress could be dismantled with the stroke of a pen.
Historically, before the NDIS, people with disabilities were invisible and heavily stigmatised. And these attitudes started to shift positively as people with disabilities started to access mainstream society through NDIS community participation funding supports- they become visible, people that were involved and integrated into local community etc. Regrettably, the Minister’s comments that somewhat community access is a waste of money and not useful had a very negative impact on how the public conversation about people with disability/ies is shaping - especially online and in the media — increasingly portrays people with disabilities and their families as burdens or “cheats”. That is deeply offensive, irresponsible, and harmful.
I self-managed my NDIS funding. I submit all required documentation and invoices for every single claim. Families like ours are not “rorting” the system. Most of us are simply trying to survive and give our loved ones the best life possible. If large companies are exploiting the system, then government policy and regulation should address that — not punish vulnerable people.
I invite you to spend 24 hours in our home and witness our reality.
Come and see how hard life can be for and me as his sole support person. See how exhausted we both are after nights where I hold my 45-year-old son through repeated meltdowns and panic attacks. See how essential his support workers are — helping him get ready for the day, ensuring he eats properly, takes his medication, goes to work and attends appointments, and
Submission 2696
maintains his personal care, in short when they take over when I am completely drained (and often drowning)…
Those few hours of support give me a little respite, allowing me a brief chance to rest and recover, so I can continue caring for him.
I live with constant fear about the future.
What will happen to my son if these supports are reduced? What will happen when I can no longer care for him? What will happen when I am gone? What will he eat, how will he care for himself, take his medication, get out of bed…in short survive…
Yet is a beautiful human being and a good person, he is genuine and loving and caring and has much to contribute with the right supports. He is also very loving and lovable and has a lot to offer - he has put a lot of work and effort into his life and he deserves a good and dignified life. He didn’t choose his disability, this is how he was born. And I as his mother love him dearly and I am very proud of the man that he is. And I would submit to you that to deprive society of the contributions and qualities my son has to offer is to do our society a disservice. Because our strength as a society lies within our diversity, it makes us better, richer and thus sustainable and cohesive as a whole. The social balance sheet is truly worth the dollar costs.
Over recent years, with the support of the NDIS, we have been working very hard to help build independence and life skills. It’s a slow but steady progress. I fear these proposed cuts will undo years of progress.
Please do not rush these changes. People’s lives literally depend on receiving appropriate and adequate NDIS support. and my life depend on appropriate supports to live with dignity and safety.
Thank you for listening to our story.
Respectfully,
Balmain, 2041