Attention: Committee Secretary, Senate Standing Committee on Community Affairs
Submission to the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Submitted by email: community.affairs.sen@aph.gov.au
NDIS Participant
31 May 2026
I would like to make a submission to the Senate Standing Committee on Community Affairs about
the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill
I am a person with multiple complex physical and sensory disabilities with no family in the Southern Hemisphere and live what can be a dangerously isolated life in regional Australia.
I am extremely concerned about the harm some of the proposed changes will cause me as my life was very precarious prior to the NDIS and , quite frankly, not really a life worth living.
Prior to receiving funding for capacity building and assistance with accessing social, community, & civic participation , I was not able to access or afford services that can build my capacity – services that are out there but out of reach. My isolation and being almost housebound due to mobility challenges and lack of transport had me stuck inside my home waiting to die. It felt unfortunate that I had many years of this ‘non-life’ ahead of me still, until the NDIS gave me funding to be able to participate in the world again. Not a ‘normal’ life of course, but with sufficient opportunities to do ordinary things , life was worth living again, as it had been before my catastrophic acquisition of disabilities at only 44.
I believe the Bill requires further scrutiny and amendment before it proceeds. And I would like to tell you just a little of the harm that will be caused by the sections I object to. Having been given such an incredibly (to be honest, outrageously) short time period to prepare a submission as a person with disabilities and limited capacities, I cannot do the submission I would have liked. I know I am harming my health just by pushing myself to do this before June 1st. .
Parliamentary Scrutiny and Transparency
The Government guide to policy impact analysis says consultation should occur for a minimum of 30 days where possible.
Recommendation: Amend the consultation period for a minimum of 30 days as recommended
Key decisions left to ministerial instruments, not law
The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule 3) by signing an instrument, without going back to Parliament. The rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.
How this affects participants: The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.
This makes my safety and basic quality of life extremely vulnerable to fluctuating governments and removes my protection and rights under the law. Living with disabilities is not only incredibly hard, it is highly stressful. Knowing that a minister at any time can change what I can depend upon is quite frankly terrifying.
Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Existing participants face narrower criteria and fewer rights to challenge decisions
The issue: The Bill changes the rules for existing NDIS participants and makes it harder to challenge poor decisions about supports and funding. It also restricts when you can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge poor decisions about their supports.
How this affects participants: This does not protect participants already on the NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced or their plan renewed automatically, they may have limited or no ability to challenge that decision. This could make it harder for people to get extra support when their circumstances or disability change.
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There have been many poor decisions made for participants which have been acknowledged and rectified during the review process. I feel that, to have no rights in this way to checks and balances can only lead to unacceptable suffering and terrible outcomes. My disabilities are all a deteriorating
and insufficient supports speeds this deterioration up. Disabilities are often far more complex than You can possibly expect every single decision maker to have a good understanding of.
Recommendation: Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.
Unreviewable ministerial power to cut funding across all support categories
The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).
How this affects participants: A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.
A minister making decisions, to the best of their ability but at a distance from the lived experience of my disabilities, can lead to great harm without any ability to appeal and impart important information such as: , Because I live regionally and because I have so many different specialistappointments due to the complexity of my mitochondrial disease, I have to spend over half of my accessing community etc. funding on being taken some distance to these appointments. Some take all day and my annual heart appointment involves staying overnight because I don’t have the capacity to do the journey in a day. If you halve my funding for accessing community, social & civic participation, I will not be able to get to all my medical appointments. I will have absolutely no funding for getting out of the house, and be back to being housebound and just waiting to die, as I was before the NDIS. No way of going shopping, no way to get clothes or shoes, to go for a walk in the park, so essential for my health, to go anywhere. No social events, no dinner at a friend’s, and no time in nature which reduces my stress. And no more volunteering, my way of feeling connected to community because I have no family. Being housebound and inactive like this deteriorates my capacities rapidly, causing mitochondrial die off and leading to being bedridden for a greater proportion of the day an and increased need for supports.
Because I am legally blind I am dependent upon technology to give me any independence. Technology constantly improves , giving me the ability at times to be more independent. I have This assistive technology is beyond my reach financially and sometimes you have to save up your funding for it.
I have to try and save some funding for the times when my capacities are at their lowest and I can hardly get out of bed at all, so need more help. If you introduce removing saved up funds, I will be unsafe for the first few months of the new plan.Spending needs to be able to fluctuate.
Recommendation: Have a human being assess complex circumstances including the high number of hours I need workers to take me to medical appointments and how far away they are. Require that
unspent funds carry over at plan renewal for participants saving for high-cost items or very high needs periods, and require independent review rights before any funding reduction takes effect.
Requirement to exhaust treatment options before eligibility
The issue: A person with disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will be removed (Schedule 1 Part 3).
How this affects participants: People with disability will need to prove their impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them.
IF a treatment ever becomes available , I would be unlikely to be able to access it unless NDIS supplied the funding and worker to support.
Recommendation: Do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.
Unvalidated functional capacity assessment tool risks misidentifying need
The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.
The named assessment tool is the Instrument for Classification and Assessment of Support Needs (I CAN). I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.
How this affects participants: If the assessment tool does not accurately capture the full extent of a person’s disability, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience.
My disabilities are multiple and complex , mostly because of the nature of mitochondrial disease, as well as the way they interact with each other. Vicious circles are common, such as insufficient supports leading to a need for even more support. Where I live and being without family or informal supports, long periods where I am bedridden and fluctuating capacities are examples of what needs to be understood when assessing what supports I need.
Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those
with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.
Supports cut before replacement system is ready
The issue: From 1 October 2026, the government has announced funding for social, civic and community participation supports will be cut by 50 per cent and capacity building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4. The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.
How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.
Because I live regionally and because I have so many different specialist appointments due to the complexity of my mitochondrial disease, I have to spend over half of my accessing community etc. funding on being taken some distance to these appointments. Some take all day and my annual heart appointment involves staying overnight because I don’t have the capacity to do the journey in a day. If you halve my funding for accessing community, social & civic participation, I will not be able to get to all my medical appointments. I will have absolutely no funding for getting out of the house, and be back to being housebound and just waiting to die, as I was before the NDIS. No way of going shopping, no way to get clothes or shoes, to go for a walk in the park, so essential for my health, to go anywhere. No social events, no recreation, , and no time in nature which reduces my stress. And no more volunteering, my way of feeling connected to community because I have no family. Being housebound and inactive like this deteriorates my capacities rapidly, causing mitochondrial die off and leading to being bedridden for a greater proportion of the day an and increased need for supports.
Recommendation: Require that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.