National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3040
I am an NDIS participant living with severe Long COVID, a post-viral condition. I am writing to express my deep concern about the proposed changes in this bill.
Firstly I want to say emphatically that the bill should be completely dropped. It is unjust and guaranteed to cause enormous harm to thousands of disabled people.
A bit on my personal story:
The NDIS accepts the evidence provided by my specialist GPs, neurologist and physiotherapist that I am completely bedbound, outside of assisted toileting by my bedside. I cannot walk, I do not have access to a wheelchair, I have very limited use of my arms and hands, and I can’t do even simple things like use a laptop.
Despite accepting that this is my level of disability, my current NDIS funding provides only four hours of support each day. I require assistance with toileting, preparing and eating meals, shopping, personal care and almost every aspect of daily living. I am also not funded for any wheelchair (let alone a reclining power wheelchair which is what is needed). My current funding is already inadequate to meet my basic needs.
Without adequate daily support, I cannot reliably access food, personal care or toileting. These are not optional services - they are essential to my survival. Death is a likely outcome if my funding is cut.
I am deeply concerned about seeking a review of my plan because I have watched many participants in my community submit updated evidence of their disability only to have their funding substantially reduced, despite the fact that their condition has deteriorated. Rather than feeling safe to ask for the support I need, I fear that doing so could leave me even worse off.
The proposed bill would only increase that fear. The savings appear to come primarily from reducing participants’ supports, rather than addressing provider fraud, waste or inefficiency. Many participants are already surviving on funding that does not meet their basic needs. Further reducing supports will not improve the sustainability of the scheme if it leaves disabled Australians without the care they need to live safely and with dignity.
Before becoming disabled, I worked in community health as a personal trainer and was studying exercise physiology. I contributed a lot, and I deserve adequate care now.
One aspect of the bill that particularly concerns me is the proposal that applicants must have exhausted “all appropriate treatment” before they can access the NDIS.
For people living with post-viral illnesses such as Long COVID, there are very few established treatments. Many interventions remain experimental or are highly contested within the medical literature. Some treatments that people may be expected to try are not funded through the PBS because the evidence is considered insufficient. It is difficult to understand why treatments that are not considered sufficiently evidence-based for public funding can nevertheless be considered “appropriate treatment” for the purpose of determining NDIS eligibility.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3040
This is especially dangerous for people with post-viral conditions. Some interventions have been shown to worsen symptoms for people with illnesses such as Long COVID and ME/CFS, namely Graded Exercise Therapy. GET has been long removed from treatment guidelines in many countries around the world. It is scientifically backwards that the NDIS requires this intervention for some participants. Requiring people to undergo interventions that carry a significant risk of deterioration is inconsistent with the purpose of the NDIS, which is to support people’s functional capacity, not place it at further risk. Decisions about what constitutes “appropriate treatment” should always be made by a person’s treating medical specialists, taking into account the available evidence and the individual’s circumstances.
I also have serious concerns about the expanded role of automated decision-making and artificial intelligence within the NDIS.
Disability is complex. My circumstances cannot be reduced to a checklist or an algorithm. Decisions about whether I receive the support that allows me to eat, use the toilet, remain safely at home and participate in society should always involve meaningful human judgement. Automated systems can make mistakes, fail to understand nuance, and reproduce biases contained within the data they are trained on. When those decisions have life-altering consequences, there must be strong safeguards, transparency and genuine opportunities for review by human decision-makers.
I ask the Committee to carefully consider the real-world consequences of these changes. I am already living with inadequate support despite overwhelming medical evidence of the severity of my disability. I fear this bill will make it even harder for people like me to access the assistance we need to live safely and with dignity.
The NDIS should exist to support Australians with disability, particularly those with the highest support needs. I urge the Committee to amend or reject provisions that further restrict access to essential supports, require participants to exhaust “all appropriate treatment” regardless of the quality of the evidence or the risks involved, or replace individual assessment with automated decision-making.