National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 932
The hon Mark Butler MP
Department of Health, Disability and Aging.
To whom it may concern
I wish to lodge a formal submission regarding my grave concerns with the current proposed changes to the NDIS.
My adult daughter aged 25 years lives in my home with high intensity complex needs. She requires 24 hr active support 7 days per week due to her disability and having life threatening conditions. Part of my daughter’s disability is that she suffers refractory epilepsy. This means despite multiple medications her seizures cannot and will never be controlled. Surgery is not an option as her whole brain is damaged.
In addition to my daughter’s disability, her seizures have resulted in neurological damage and deterioration of her overall function. Previously being able to walk independently, she now requires 1:1 support for mobility and needing a wheelchair. Previously being able to drink fluids and eat foods, she now relies on enteral feeding to maintain her dietary requirements. She relies on supports to attend to ALL her care requirements. Her level of care can change in a matter of seconds depending on a seizure. She is a very cheerful, engaging and intelligent young woman.
Currently she is funded adequately, and her basic needs are being met. We are however anxiously awaiting the outcome in a ‘change of circumstances’ to be determined due to a clerical error in her application for a wheelchair. A clerical error whereby NDIS were unable to ‘reverse or rectify’ and we were notified our option to apply for the wheelchair was to submit a change of circumstances.
I am responsible for my daughter’s care and maintain fulltime employment running my own business. My business employs 25 staff. I rely on NDIS funding to maintain my employment, financially support my family and avoid living off a welfare system. This would be detrimental to my families wellbeing.
It is my daughter’s right not only as an Australian BUT AS A HUMAN BEING. To have care and live a dignified life.
Changes proposed by the government will be catastrophic and include repercussions such as:
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people with a disability living with inadequate care.
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unimaginable hardship for people with a disability and their families.
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deaths not only from lack of care but from suicide.
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Increased people on welfare because families will need to leave paid employment to care for their loved ones.
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Poverty YES there are people on the system who do not need to be. YES there are providers committing fraudulent behaviour.
YES we need to review processes and budgets BUT there is a humane way to do so.
I PLEAD WITH YOU. I BEG YOU. My and my daughter’s life depends on the changes to be inline with basic human rights. PLEASE reconsider these drastic changes. There is a better way.
Thank you for your time.
Sincerely in hope