National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1017
26th May 2026
To Whom It May Concern,
I am a participant of NDIS, with two funded conditions including a severe chronic illness. I am also carer to my two young adult children who are both funded for autism (level 2/3) and in the process of applying to have the same chronic illness added.
Please make my submission anonymous.
In my opinion this bill should not be passed without major changes, if at all. The proposed NDIS Bill poses huge risks to myself, my family and others with disabilities and their unpaid carers.
My primary concerns about the NDIS Bill are as follows:
Unpaid carers already carry a $78 billion load - cuts will push us past breaking point. I am one of the hundreds of thousands of unpaid carers in Australia. Our work and care saves the government $78 billion per annum. I am also one of many unpaid carers who are also disabled. My role as an unpaid carer has caused substantial reduction in my own function due to the physical, mental and emotional strain involved. The greater the load the government places on carers like me, the greater the overall burden as our own disabilities will become more severe. My husband is the only (relatively) able bodied person in our home, though he also struggles with neurodivergence and health issues. He works long hours as the sole income earner in our home, and then comes home and provides care to us all in his non-work hours. He is in burnout, has no social life or hobbies, and I am concerned that he will not be able to continue to provide this level of care long term. Then what will happen? I envisage that he will end up needing to stop working, which would mean that I would end up on Disability Support Pension and he on Carer’s Pension. Although that financial burden wouldn’t be on the NDIS, it still means the government would be financially responsible for our pensions as well as losing yet another tax payer. Social and Community Participation budgets are not about letting NDIS participants to spend their days having fun and enjoying luxuries. These budgets serve so many functions such as: o allow disabled people to build capacity, learning and increasing confidence in people in community settings. For example, my son is being taken clothes shopping by his support worker this week. At 22 years old, he has never been shopping for clothes without one of his parents before. His support worker will help him to manage his money, communicate with staff and make wise choices. o allow disabled people to access medical appointments etc. For example, my daughter is unable to drive or take public transport. She needs assistance at all times. Thanks to her social and community participation budget, she has been attending doctor’s and dentist’s appointments without her parents needing to come along as well. In our family, this is vital as I am housebound/bedbound and unable to take her and my husband is our only income earner. Also, it’s important for normal development that she be able to keep her medical appointments private from her parents – it’s not normal or healthy for a 23 year old adult woman to share all of her medical details with her parents. o allow disabled people to do their shopping. I am housebound due to my funded disability. For me, this means that I leave the house about 3 or 4 times per year for essential medical appointments. I have not left the house since my father’s funeral following his death in January. I need to do shopping and run errands in the community in the same way as any other adult. Some shopping I can do online. But not everything. I am reliant on paid supports to assist with tasks such as posting a parcel, returning faulty goods, renewing my mobility parking permit and collecting prescriptions from the pharmacy. Without Social and Community Participation budget, none of these things are possible. The Minister for NDIS has said that he has heard of support workers scrolling on their phones while out with participants, and that the participants have “fallen out of their wheelchairs”. He has used this to justify cutting Social and Community Participation budgets by 50% with no
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1017
consideration for an individual person’s situation or needs. I am confused why this evidence of support workers failing in their responsibilities means that people with disabilities should be penalised! The NDIS Bill changes “reasonable and necessary” criteria to “consistent with financial stability of the scheme’. This means that NDIS participants have no basis to understand their rights or make consistent decisions. It also means that decisions made are no longer based on what is needed by the individual participants, but by what the government deems expedient financially. The NDIA bill fails to define “severe and permanent disability” which is one of the eligibility criteria. o Without this definition, I have seen arbitrary, and frankly baffling, decisions made about participant eligibility. I have seen applications rejected on the basis of severity of their disability when they are unable to walk, but are told that they can crawl to their bathroom. Or they are told that because they can walk as little as 10m, they are able to do their own shopping. o Without this defined, people like myself with fluctuating or complex disabilities are frequently excluded. People who are able to leave the house on their rare good days are rejected despite the fact that they spend the majority of days unable to leave their beds. o It is unconscionable that hundreds of thousands of people will be removed from the scheme for not meeting the “severe and permanent disability” criteria despite the fact that these criteria have at no point been defined. The proposed NDIS Bill expands Ministerial and Agency powers without ensuring that there are adequate safeguards. As we live in a democratic country, it is reasonable for us to expect that there be oversight on individuals to ensure that all people are represented and treated fairly. Allowing the Minister for the NDIS to make unilateral changes to funding affecting large numbers of participants without being answerable to anyone creates a huge sense of fear for participants and their families. I acknowledge that costs are increasing and it’s important to ensure that the NDIS budget doesn’t become unsustainable. However, there are other ways to cut costs. Every NDIS participant can tell you that the NDIA is very inefficiently run, and there is a lot of unnecessary spend. o Prior to NDIS being rolled out in our area, we were taking our children to Occupational Therapy, which cost approximately $85 for a 1 hour session. As soon as NDIS rolled out, the standard cost of occupational therapy became $199/hour. o Support workers with no experience or training other than a first aid certificate are charging the maximum price allowed in the NDIS price guide because they can. o Support coordinators very commonly charge hundreds to onboard participants and then quit or reshuffle the business after very short periods of time so participants have to cover the onboarding costs again. I recently had a support coordinator charge $25 for every text or email (some charge more). This included texts acknowledging my reply ($25 for a thumbs up!). She sent me an email with details of a support group she’d found. This was a face to face support group which she was recommending for me as a housebound/bedbound participant. When I replied that I wasn’t able to attend face to face groups, she replied that she didn’t think I would be able to. And yet I paid $100 for that service including the emails and investigating a group she knew I couldn’t join. A great support coordinator is a huge blessing. But there are far too many out there doing everything they can to grab our money. o Cancellation fees – allowing providers to charge the full rate if participants cancel within 7 days is ridiculous and an enormous waste of money. And it makes me so outraged that support workers are typically casual so although the agency charges us the cancellation fee, the support worker gets nothing. Restricting plan reviews o a lot of people would be very happy to know that they will not be having a plan review every 12 months, though I think we should have more predictability rather than waiting to hear in each 12 month period. However, restricting the option of plan reviews means that participants are suffering. o In theory, we can request a review if our circumstances change or if the plan is not suited to their needs. In practice, these reviews are taking far longer than the participant service
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1017
guarantee allows and are far too often rejected. Planners are giving participants very tiny first plans, instructing them to get an OT report and then apply for review. But the reviews are then being rejected after months of waiting, and then participants have no funding left through no fault of their own. o I requested a change of circumstance review due to significant loss of function (I have a progressive condition) and moving house. It took 9 months, only to be told that I was never funded for the progressive condition and my funding slashed. Through a Freedom of Information request, I was able to demonstrate that it definitely was funded and had been for 5 years. I showed this to the review officer who responded by removing it from my list of funded conditions and telling me this was not reviewable. Thankfully I was able to get this overturned at the ART, but it took another 12 months, and came at the cost of significant and substantial further loss of function, not to mention costs in lawyers etc. o If the new Bill goes through, the NDIA may decide to transition the participants to a new framework plan which removes the right to request a review. Requiring all providers to be registered o Registration is a very expensive and time-consuming process. This effectively excludes small businesses and means all of the money goes to big business. Ironically, big businesses are the most likely to be rorting the system, and they always charge the maximum rates for everything, so this step would make the NDIS more expensive. o As a result of my disability, I am immunocompromised. This means that I cannot have support workers come for a shift if they have any kind of contagious illness. Support work agencies refuse to work with me because they won’t cancel shifts if the worker is sick. They also refuse to be low fragrance, which I need. This is not a preference, it is a medical necessity due to my funded condition. I am therefore concerned that if this requirement for registration goes through, I will be unable to employ support workers. Primary disability – this legislation states that the NDIA will only fund supports directly related to a participant’s primary disability. In some places, we are told it says the disability that people initially made access for. This is extremely concerning. o NDIS participants are human beings. We are not one condition. We are far more complex than this. It is essential that participants are able to be funded for more than one condition. My adult children and I are all funded for autism (my children level 3 and myself level 2, so not this “mild” autism the government repeatedly refers to). We also all have very significant and permanent disability arising from severe chronic illness. These conditions require quite different supports, and we should not have to choose between them. o People are very often approved for the NDIS for one condition and are later diagnosed with others. It might be that the other condition has developed later, it’s taken some time to be formally diagnosed, they needed to ensure it was a permanent condition or (and this is very common) the NDIA rejected the other conditions they applied for. So many people are approved for autism and their other conditions rejected. If the legislation goes through, we would never be able to change what condition we are funded for. This has got to be a breach of human rights? Standardised assessment – the government has announced that it will use standardised assessments to determine functional capacity, which seems to be allowed for in this Bill. o I believe it would be helpful to have some way of providing evidence for access applications that do not require people to pay thousands of dollars for reports. o However, I do not believe that the proposed iCAN assessment is suitable. It has not been validated for use in the way that the NDIA intends to use it. In addition, there are many different types of disability and one single standardised assessment cannot capture the nuance of many disabilities, meaning that a lot of people will fall through the cracks. “Effective and beneficial” supports – while I agree that there is a lot of value in considering peer reviewed research when determining if a support is likely to be beneficial, this cuts out the individual. I am concerned that for people with rare and/or complex conditions, there is frequently minimal peer reviewed research. For example, I recently purchased an item of low cost assistive technology. Although there was no research that my therapist and I could find for the specific use of this AT for people with my condition, we conducted extensive trials on how it helped me over a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1017
6 month period, and were able to apply for this to be funded. The new bill may exclude supports such as this. The new legislation states that applicants must have tried all possible treatments, regardless of accessibility or affordability. o Firstly, the NDIA refuses to tell us what treatments they’re expecting so that we can ensure that we have tried them. Believe me when I say we have asked! o One treatment which the NDIA commonly recommends for people with ME/CFS is to attend a specific clinic in Sydney. The people who are applying for access to the NDIS are usually housebound, frequently bedbound and many do not live in Sydney. How can the NDIA reject their application just because they haven’t tried a treatment which was completely inaccessible to them? o In my first application, one of my conditions was rejected on the basis that I had not tried a treatment recommended by my specialist. This rejection did not take into consideration that this medication was not yet available in Australia, and when it became available here, the cost was approximately $300/month and I was unemployed due to my condition. I was able to provide evidence that this was not a reasonable expectation. But with the new legislation, I would be expected to do this regardless of those barriers.
This legislation is being rushed through. The normal recommended time periods for submissions on changes to legislation is 4-6 weeks. We are being given only 2 weeks, despite being a population who typically need more time to process and respond. It is essential that this process slow down and more consultation entered into before the legislation is voted on. I have only touched on some of the issues that I see. I entreat you to consider these submissions and make changes to keep the most vulnerable people in our community safe.
The NDIS is a lifeline. Any legislative change must strengthen rights, not weaken them.
I urge the Committee to amend the Bill to ensure it protects participants, supports carers, upholds human rights, and remains true to the founding vision of the Scheme.
Thank you for considering my submission.
Yours sincerely