National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1237
NDIS submission
My name is and I am an NDIS participant living with severe fluctuating neurological and psychosocial disabilities, including Functional Neurological Disorder (FND) and Complex PTSD. I am writing to share my lived experience and express concerns regarding proposed NDIS reforms and the impact they may have on participants living with dynamic and complex disabilities.
Before I had access to the NDIS, I was attending the emergency department at least twice a week for years because the public health system alone could not meet my high psychosocial and neurological support needs. The NDIS has quite literally kept me alive, kept me safe, and significantly reduced strain on the hospital system.
My disabilities are dynamic and fluctuate day to day, sometimes hour to hour. A “good day” for me looks like being able to attend medical appointments, go to the shops for groceries, or participate in the community in my wheelchair with a support worker by my side. Even during these periods, I still require constant supervision and support due to the unpredictability of my neurological condition and the ongoing risk of seizures occurring in the community.
A “bad day” can happen suddenly and without warning. Within the space of an hour, my neurological condition can flare severely, causing functional paralysis from the neck down and leaving me entirely dependent on another person for every aspect of daily living. During these episodes, I lose the ability to roll over in bed, reposition myself to prevent pressure injuries, sit upright, feed myself, use the toilet independently, or transfer safely out of bed. My support needs increase dramatically from requiring moderate daily assistance and supervision to requiring full physical support and care.
Alongside the neurological impacts of my disability, I also live with severe psychosocial disability. There are periods where I experience intense suicidal thoughts and urges to self- harm, and it is only through trained support workers and behaviour support strategies that these episodes are safely managed before reaching crisis point. These supports not only keep me safe but they also prevent repeated crisis presentations to the public hospital system.
Because of the NDIS, I can do ordinary things many people take for granted… shower, eat meals, use the toilet on my own, attend crucial medical appointments, leave the house, and participate in my community with dignity and support. Without these supports, I would become increasingly isolated, unsafe, repeatedly hospitalised, and unable to access essential parts of everyday life.
The reality of dynamic disability is that support needs are not predictable or static. Someone may appear relatively “okay” one moment while still requiring significant ongoing support to remain safe and stable.
One of my biggest concerns regarding the proposed reforms is the continued misunderstanding of dynamic and fluctuating disabilities. A person appearing capable briefly
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1237
does not mean they can safely sustain that functioning consistently. Short assessments or standardised systems cannot accurately capture the reality of living with conditions that fluctuate unpredictably hour to hour or day to day.
I am very concerned that increasing reliance on rigid assessments risks oversimplifying disability into scores or categories that fail to capture invisible symptoms, safety risks, supervision needs and fluctuating presentations. Complex neurological and psychosocial disabilities do not fit neatly into boxes.
I am also concerned about community participation supports being cut. Community participation is preventative support, not a luxury. Supports that allow people to attend appointments, leave the house safely, access their community, attend church, buy groceries, and remain socially connected are essential in preventing isolation, deterioration, crisis, and hospitalisation.
Flexible supports through the NDIS are critical in preventing crisis escalation and reducing pressure on the public health system. Support workers do far more than assist with tasks…For me specifically they provide supervision, behavioural support implementation, emotional regulation support, seizure management, and early intervention during periods of deterioration.
Cutting disability supports does not remove participants support needs.. it will just put the pressure back onto hospitals, emergency departments and families. For me this looks like my elderly grandmother continuing to provide essential care and repeated hospital admissions due to lack of formal support and funding. Cutting funds is not going fix the problem.
Psychosocial disability supports are also life saving and frequently misunderstood. Behaviour support practitioners and trained support workers play a vital role in maintaining safety, reducing crisis escalation, and preventing repeated hospitalisation for people living with severe psychosocial disability.
I urge the government to ensure that proposed reforms:
Recognise and appropriately assess dynamic and fluctuating disabilities Protect flexibility within participant supports Preserve psychosocial and community participation supports Meaningfully include lived experience voices in reform development Ensure reforms do not unintentionally increase hospital reliance and crisis presentations
Thank you for taking the time to read my experience and concerns.
Kind regards,