National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2334
NDIS Amendment Bill Inquiry Submission 2026
Submission on the NDIS Amendment Bill
My name is and I have been living with significant neurological and physical disabilities since 2018. I spent seven years trying to gain access to the scheme, (4 applications, 3 internal reviews, and 18 months spent at tribunal with five lawyers put on my case to fight this despite every piece of evidence I needed to have being accounted for). I was finally granted access a week before I was due to go to court last year. Despite this and the numerous functional capacity assessments the NDIA had ordered stating what supports I need, I was given a five year plan with bare minimum funding that has not as of yet left me any better off than the state supports deemed insufficient by multiple occupational therapists. I have been awaiting any update on a plan review since February. The whole process of dealing with the agency and the lack of appropriate supports given in a timely manner has left me more physically disabled than I was prior to starting this process. Unfortunately, I need the supports and have no alternative option. I am writing this submission in the hopes that lived experience of people like myself is considered by those in charge prior to making such sweeping cuts as those proposed by politicians with zero idea what it’s like to be disabled or living on a pension that is below the poverty line in a cost of living crisis.
I have many serious concerns about this bill and the way it disregards the needs of disabled people.
Firstly, as someone who had such a difficult road to access despite significant evidence as my primary energy limiting condition is much maligned by the agency, I worry about being one of the 160000 people slated to be kicked off the scheme. I also worry that the proposed automated systems for planning and functional capacity assessment will lead to putting those of us with complex conditions in a very small box, if the assessment makes allowances for us at. The same conditions are never going to be one size fits all. Especially concerning is if this ends up being put to use in the review process. These concerns have been addressed by many advocate bodies.
Secondly, the proposal to limit the frequency of reviews actively puts people in danger should their needs significantly change, or if like myself, the agency is giving a plan that isn’t suited for long term needs in spite of the evidence. For instance, I will be needing to put in a second review for home modifications to make my home safe and accessible sometime soon after my current one goes through because I haven’t been given the funding for construction and OT reporting for this. There are other supports I desperately need now- if these get knocked back yet again, I should be entitled to a fair and impartial review process that actually carries weight. Other situations I could consider here would be plan reviews in the instance of changes in progressive disability, someone needing to move home in a domestic violence situation or as a result of the housing crisis. It’s not good enough that timeframes are already so blown out and its actively going to cause harm to many to place restrictions on the number of reviews allowed.
Changing the definition of fully treated to be arbitrarily defined by the agency is to disregard the far more qualified voices of doctors and specialists. A few examples from my personal experience: Pg 1 of 4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2334
NDIS Amendment Bill Inquiry Submission 2026 One of my approved conditions, Thoracic Outlet Syndrome (vascular and nerve compressions under the collarbone), is sometimes treated with surgery to relieve compressions by removing extra ribs if there are any (I do not have these) and muscles in the neck that help hold up the head. This surgery has a roughly 50% success rate, and my medical team indicated that at this stage I am not a good candidate for surgery; it will leave me with further permanent upper limb impairment and should only be considered if I end up with recurrent vein or arterial blood clots as this is the point where the risk of not getting surgery outweighs the risk of danger not doing so entails. The primary condition I was approved for, POTS, can be treated with off label use of heart medication to lower heart rate. This often doesn’t alleviate disability as it doesn’t resolve the cerebral hypoperfusion aspect of POTS (lack of blood flow to the brain exacerbated by but not entirely related to postural changes). A cardiologist wouldn’t prescribe me any medication for this purpose— as my heart rate frequently dips too low it’s contraindicated and actively dangerous. The agency disagreed with these doctors’ medical opinions numerous times throughout the appeals process because they were of the opinion I should’ve tried these measures (that were medically deemed unsafe) before it could be determined my conditions were permanent. This is not an extensive list of things they tried to say weren’t adequately treated against the medical evidence. Currently, when it comes to an external review, they legislatively don’t have a basis to do this. It greatly concerns me the government wants to give them that power, especially if it’s been discussed that access shouldn’t be based on conditions. It’s people with complex and varied conditions like mine that are already targeted with this kind of mentality by the NDIA that are going to be further eviscerated by this proposed change.
The proposed changes to participant engagement rules and ‘non-contactable participants’ places significant burden on those on the scheme and not the agency itself. My listed communication preference with the agency is email as I have cognitive issues as a part of my neurological disability— I process writing far better as a result as I can reread things; come back to it at a later point if I’m really struggling at a given moment; it means I can communicate with accessibility features (i.e. voice to text, slowly typing, or with physical assistance as I intermittently lose my voice due) and with my energy limitations I used significant amount of energy trying to fill in gaps to follow a phone conversation with constant tinnitus (part of the same condition). It gives me time if I’m in a health flare. I can’t recall many occasions where the agency has stuck to this mode of communication. I know of others with the same or similar conditions who have previously been penalised by the agency for lack of engagement when the agency has ignored this reasonable access request that they provide an option for time and again. Once again this ignores disabled people facing increasingly common crises like homelessness who may not have phone access as well as punishing people who aren’t being given adequate supports to be able to engage with the agency on a whim.
Shortening administrative timeframes is a huge concern. Over the last two years I haven’t been able to get appointments with my specialists within 3-9 months even if things are urgent. As far as they are concerned urgency applies to legitimate health needs and not bureaucratic ones. The timeframes keep increasing, so to shorten the time that participants are allowed to comply with agency requests is really ignoring the Pg 2 of 4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2334
NDIS Amendment Bill Inquiry Submission 2026 medical climate and will punish us for something we have no control over. Given the existing ones are already too short to obtain new evidence perhaps these should be extended with opportunity for multiple extensions if necessary. As compliance goes I have also dealt with the agency trying to summons some private health records that were absolutely irrelevant to the matter at hand. This was used in a way that felt very intimidating, I had to fight for this to not occur. I feel incredibly anxious about the vast power that its being proposed the agency should be given, given the way the power they currently have is being abused.
There was also discussion of removing funding for support coordinators and plan management. As my primary disability comes with energy limitation and cognitive dysfunction I rely on plan management to ensure invoices are paid. Without this I will inevitably either make a mistake or not submit something to be paid in time. I manage my own bills and appointments and have more than enough life admin on my plate managing complex conditions without also having to be my own personal accountant as a result of needing disability supports. I am also getting burnt out managing these supports on top of everything and often this job falls to my mum as I can’t keep up with it. My mum barely has capacity for this and will not also be able to take on plan management on top due to her own disability. Neither of these is a bonus thing to have; it’s completely essential. This should be kept as it is within the scheme and not cut to save a buck.
Sweeping cuts to social supports are actively dangerous. Apart from basic community access like if I need to go to the post office or just want to go outside (I cannot do this unattended) I use my social supports for very essential things like to go to medical appointments, have someone pick up groceries or medications from the pharmacy, or to go and gather quotes and trial equipment for necessary assistive technology. I was not given sufficient hours for supports and the social support hours I have are also covering meal prep and some personal care at the present time.
Finally, as someone living in a regional area I am incredibly concerned about the prospect of all providers needing to be registered. I believe strongly this will cost the agency significantly more money. For instance the same kind of waterproof mattress protector and ergonomic pillow bought from a big box store both cost me a third of what it would’ve cost to buy the former at a registered disability aid store or the latter from a registered provider online. Additionally for items that need to be trialled in person, living regionally means going to a registered provider isn’t always an option but a standard store will stock identical items I go in and trial. Living in a retirement town my support provider predominantly has aged care clients, they are a small business as a few large ones failed on multiple occasions to comply with safety requirements for my severe allergies. I think I am their only NDIS client. If all providers are expected to pay for registration it means both larger and small businesses won’t pay out of pocket for something that isn’t a major part of their business earnings. This will leave me scrambling to find new supports, and likely put my health at risk. It will also leave me paying significantly more for assistive technology without actually having been able to trial it.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2334
NDIS Amendment Bill Inquiry Submission 2026 I strongly believe that any crackdown on fraud needs to be directed in a way that keeps participants safety, autonomy, and needs as a chief focus. This current bill does none of that. I also strongly believe the agency itself needs to operate on timeframes set out with legislation, reviews need to be allowed to apply for when needed and be addressed timely- this is not currently happening and participants have no recourse. There should be no assigned quota of people to remove from the scheme. The agency should listen to the professional health and allied health opinions it asks for. Costs could be saved on lawyers by not dragging cases with really obvious outcomes through the Administrative Review Tribunal and High Court when the agency loses. The NDIS is not working in many ways but that’s not on participants with legitimate needs to suffer for. If there’s going to be a shift to foundational supports they need to be fully implemented and it needs to be proven they work first. Even then, if they were aimed to be providing even a similar level of support (the concern is it won’t) it’d cost more to set up separate agencies and do all the marketing, branding, etc. that comes with that. We could tax gas exports and Gina Rinehart and fully fund the NDIS and other areas of the budget. As it stands this bill pushes disabled people further into poverty than the disabled pension and our extra living expenses that aren’t covered already does while achieving absolutely nothing to crackdown on fraud. You can’t cost cut disability needs, and to do so irrevocably shifts burden onto the health system and has a negative flow on effect for large parts of our economy.
The current proposed changes to the legislation is going to kill more disabled people and disable others further, increasing reliance on future supports. For those of us lucky enough to have some kind of small family safety net it will force us into our homes and those around us to support us to a point of burnout (which if we disregard the humanity of those affected, puts more strain on the economy). The collective mental health crisis this will perpetuate for disabled people and our loved ones is huge and will be expensive. This is not a well thought out budget saving measure by any stretch of the imagination. The government should be ashamed of it’s willingness to partake in eugenics and throw the most vulnerable people in the country under the bus. The Prime Minister who cites his disabled mother and the concept of a ‘fair go’ as his reason for getting into politics should be particularly ashamed of himself. This bill in the wake of years of dragging the LNP’s mismanagement of the NDIS, and empty election promises to the disabled community is an insult to her memory. I hope that my experience and the voices of other disabled people across the country are listened to by those who represent us before this is implemented and the harm this bill will cause to so many is allowed to occur.
31-05-2026
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