National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1500
Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am an NDIS participant living with young onset Parkinson’s disease. I was diagnosed at age 48 after years of living in pain.
The supports I receive through the NDIS have been pivotal in allowing me to maintain my independence, dignity, health and quality of life. The funding I receive is not excessive or optional. It allows me to access the care and support workers that are right for my specific needs and circumstances.
Living with a progressive neurological condition means my needs can change over time. Consistency, flexibility and trusted supports are critically important. The ability to choose providers and workers who understand my condition has made a significant difference to my safety, wellbeing and ability to participate in daily life.
I am concerned that aspects of this Bill may make it harder for people like me to continue accessing the supports we genuinely need.
In particular, I am concerned about:
increased uncertainty around what supports will continue to be funded, greater NDIA powers to reassess or restrict supports, decisions being shifted into rules and lists that may change over time, and the possibility that people with disability will be expected to rely on mainstream systems that are already difficult to access.
For people living with degenerative conditions such as Parkinson’s disease, instability in supports can have serious consequences. Delays, funding reductions or repeated reassessments create stress and uncertainty in circumstances where stability and continuity of care are essential.
The NDIS has enabled me to receive support from the right people rather than simply the only people available. That choice matters. Appropriate support workers who understand complex and progressive disability needs cannot easily be replaced.
I understand the importance of ensuring the long-term sustainability of the NDIS and preventing misuse of funding. However, reforms should not come at the expense of participants who rely on these supports to live safely and with dignity.
I ask the Committee to ensure that:
participants with progressive and lifelong disabilities are protected from unnecessary disruption to supports,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1500
any changes to funding rules are transparent and subject to proper Parliamentary scrutiny, participants retain meaningful choice and control over their supports, and no reforms proceed without genuine consultation with people with disability and those directly affected.
The NDIS has had a profound positive impact on my life. I urge the Committee to carefully consider how these reforms may affect people living with complex and progressive disabilities such as young onset Parkinson’s disease.
Thank you for considering my submission.