National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1275
To: Committee Secretary
Senate Standing Committees on Community Affairs
Dear Committee Secretary,
My name is , and I am writing to object to the proposed changes in the new NDIS Bill. I am an NDIS parent-carer. I am currently undergoing daily radiation therapy treatments and am experiencing severe cognitive fatigue and brain fog. Despite my health crisis, I feel compelled to write this because the proposed changes to the NDIS place a terrifying burden on my family.
My son is 30 years old and relies on NDIS funding for Klinefelter’s Syndrome, ASD level 3, ID, and Social anxiety disorder - his funding affords him the ability to get out into the community, build his capacity, keep his body strong, etc. He has also just been diagnosed with diabetes, which will mean a need for appropriately trained carers.
The NDIS has been a lifeline for us. Because of his current funding, my son has been able to access psychology, occupational therapy, physiotherapy and wonderful independent support workers. These supports have allowed him to learn how to express his needs in ways other than melting down, get him out into the community, and maintain his strength. As a mother who is aging and currently battling my own health challenges, including radiation therapy, knowing these supports are securely in place gives me the peace of mind, and moments of respite, I need to focus more on my medical recovery.
Concerns have been raised over moving to rigid, legislative “in and out” lists of allowed supports rather than individualised, “reasonable and necessary” criteria. If my son’s supports are reduced, or if his therapies are deemed “out” under the new rules, the consequences will be severe:
Risks to my son: Without these exact services, my son risks losing his functional gains, experiencing heightened anxiety, and facing massive barriers to building his capacity and social participation. The personal choice and control of every participant is at risk — wasn’t that the very point of the NDIS in the first place? That people with a disability should be afforded the dignity of guiding their own lives as much as possible? Risks to myself as a carer: I do not have the physical health or mental capacity right now to absorb the work of un-funded therapy or to constantly battle a rigid, bureaucratic system. Forcing families to meet narrow expectations around “permanence” and treatment ignores the complex, fluctuating realities of being a parent of a person with complex disabilities.
The proposed changes create immense administrative hurdles. Expecting parents to navigate increasingly complex reassessments and rigid criteria drives severe carer burnout. In my current medical state, navigating opaque, legalistic changes to my son’s
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1275
plan is an inaccessible hurdle that threatens our family safety net. I am his sole ‘informal’ support. I am the person holding it all together.
The NDIS was designed to give participants and their families choice, control, and peace of mind. This Bill changes the scheme from an individual support system into a cost- cutting exercise that punishes vulnerable families. I urge the committee to reject these dangerous cuts and protect the individualised funding model.
Thank you for considering my submission.