National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 619
Submission to the Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Summary:
I am the husband and primary carer for my wife, Jody, who suffers from young onset dementia. This is a cruel, progressive, and terminal condition that makes any semblance of independence impossible. Becoming an NDIS participant in January has transformed the quality of Jody’s life. She has limited nursing needs at present but cannot be left alone even for a short period of time. She relies on two fantastic carers for social support about fourteen hours a week to provide vital companionship, oversight to ensure she is safe, and community access so she can continue to participate in society. This gives me a break from caring and allows me to continue working part-time. The Bill has potential to cause a catastrophic impact on Jody’s life. I submit the following key concerns:
- Parts 34A, 34B, and 45C of the Bill would enable a massive overreach in Ministerial power and endanger the very existence of the NDIS. The amendments grant current and future NDIS Ministers unfettered authority to cut funding for necessary supports. This bakes in uncertainty for every vulnerable person on the NDIS and leaves the supports they rely on at the whim of one person subject to pressure from ill-informed and divisive public rhetoric.
- The proposed Bill only allows for reductions in funding. There is no ability to reinstate, reallocate, or increase funding for services. Cuts by any future Ministers are in effect permanent. This is a sure-fire way to slowly kill the NDIS rather than secure its future.
- The Bill appears to focus on enabling the current Minister to reduce funding for social supports. The impact this will have on Jody and myself will be devastating. I will be forced to quit work and rely on welfare benefits rather than being a taxpayer. We may have to sell our house and move to a rental causing a huge disruption to Jody’s life, isolating us from our friends, and endangering my future financial position. We are not alone.
- The Bill intends to be focused on sustainability but does not consider the fiscal impacts of tax take and welfare needs of participants and redundant support workers, along with the costs of setting up state-level foundational services. A full costed analysis including all knock-on impacts is required to be inform policy and this does not exist and there is no basis for believing the Bill will result in a better economic position for Australia.
- The inclusion of tackling fraud is understandable and I am generally supportive. However, the cost involved means it is unlikely to make real savings. If the scale of potential savings has been over-estimated there is likely to be increased pressure for the Minister to cut services to meet budget commitments. Further, the public discourse a focus on fraud has provoked has been incredibly damaging and hurtful. The vast majority of participants and suppliers are good, honest people who deserve support and praise rather than abuse.
The NDIS is something we should be incredibly proud of as a nation. It helps treat the most vulnerable people thrive in our communities with dignity by enabling social participation. The Bill endangers this hard-fought position and places its trajectory into decline. All I want to do is help make Jody’s last few years bearable and the NDIS makes this possible. As proposed, the Bill will at best take away our certainty and at worst enable the Minister and his successors to make her life (and mine) miserable. Our position is not unique. This Bill as written will ruin lives.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 619
Full Submission:
I would like to start by thanking the Committee for inviting submissions on the proposed NDIS Amendment Bill and for taking the time to consider our lived experience. Disabilities are such a complex area, manifold in nature and impact, and sensitive to the context of the individual they impact and their loved ones. This submission will hopefully give you an insight into our particular case, how the NDIS has transformed our lives, highlight the areas of the Bill causing sleepless nights and worry, and suggest potential improvements.
My wife, Jody Sayers, was diagnosed with young onset Alzheimer’s disease in July last year aged 55. She had shown signs of cognitive decline for quite a while that we had put down to menopausal brain fog before things deteriorated more swiftly in the last couple of years. It then took a further year to get a diagnosis. The hospitals and specialists have been wonderful - although there is little they can do. Similarly, the support we have received from Dementia Australia has been a huge part in helping us to cope.
Jody is classified as having moderate to severe dementia. Her short-term memory and executive functions are severely compromised. She has gone from someone who ran her own business until six years ago to not knowing the day, month, or year, not being able to wash her hair independently, and needing help with even the most basic tasks. Jody can no longer work or drive and requires someone to be with her for her own safety when she goes out. Jody is (so far) physically in good shape, fully mobile, and her speech is relatively good. She does suffer from acute distress if she is left alone even for a short time (she will knock on the bathroom door to check where I am if I am taking a shower as she is frightened). Despite all this, she is the same beautiful, kind, and positive person I married 18 years ago and just wants to live a good life.
I am 46 and trying to balance work (we still have a mortgage and bills to pay), being a full-time carer forced to watch the love of my life slowly die, and somehow trying to look after my own wellbeing. I am self-employed so do not have access to leave in the same way other people do. On the other hand, I am lucky that I have been able to find contracts I can largely do from home - at least for now (I was predominantly working on client sites until a year or so ago when this became impossible). Due to Jody’s condition, I am the sole earner in the household but have had to reduce my work commitments to 3 days a week. I was referred to a psychologist to help me cope and have been flagged as at high risk of suffering carer burn-out. We have no children and no family in Queensland. Our friends have been very understanding and have continued to include us, but they all have their own lives to live. All I want to do is give the woman I love the good life she deserves but it is so difficult, and I just can’t do it on my own.
Jody was approved for the NDIS in January. Although her package does not quite cover the three days a week I am trying to work, it has been truly life changing for both of us. Jody has two fantastic social support carers who take her out and do fun things like going for walks, trips into town for exhibitions, and visiting cafes. This has freed up a lot of my time outside my work commitments to also do things with Jody while we still can, keep our heads above water financially, and most importantly, Jody no longer has to sit and watch me work and is enjoying life again. In short, the NDIS has provided an immeasurable improvement to Jody’s life.
I understand there are huge costs involved in the NDIS. I understand spending is higher than forecast. I understand there are despicable people out there defrauding the system. But I also understand the NDIS is one of the ways Australia leads the world. It is something we should be
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 619
proud of as a nation. If passed, I worry the Bill will dangle the sword of Damocles constantly above the most vulnerable people in our society.
The wording of section 34A, 34B and 45C appears to grant the Minister sole discretion to reduce funding for supports. In contrast to the opaque wording of the Bill, I feel the need to be really explicit here: This is simply abhorrent. In a functioning democracy one person should never have unfettered authority to make decisions that fundamentally and catastrophically impact people’s lives, especially when those people are the most vulnerable in our society.
The wording of 34A (and other sections) specifically only talks about reducing funding. There appears to be no equivalent provision to undo cuts or increase funding for groups of supports. The NDIS will only be able to be cut but never strengthened or reshaped. With this approach, eventually we will be left with nothing. I submit that the Bill imperils the future of the scheme and makes its subtitle (‘Securing the NDIS for Future Generations’) deceptive and misleading.
I am particularly concerned debate has focused on funding for social supports. I want the Committee to acknowledge the simple fact that social supports are not a luxury when you cannot go out by yourself or safely spend time alone. Mercifully, Jody does not yet need nursing (although that time is coming), but if left alone for more than five minutes she will become distressed and start looking for people – this means wandering alone outside where she will get lost and potentially come to harm. Social supports help prevent this while allowing for meaningful participation in society (a core goal of the NDIS), and enable me to do other things than care. Having the friendship a social support provides and going for a coffee or a trip to the City is one of the few things that makes Jody’s life bearable.
From a financial perspective, if Jody’s social supports are reduced, I fear I will be forced to quit work altogether. The tax dollars I pay would no longer be flowing into the system, Jody would need to enrol on a disability pension, and I would need to enrol on the Carer’s Payment system. This would be a bigger hit to the economy than the savings made by reducing Jody’s social supports. The mooted halving of social support funding will punish Jody for having a severe condition and make Australia worse off. I fail to see how this makes any sense.
Reducing Jody’s social supports would present the real dilemma of needing to choose between getting behind on our mortgage or selling our house – a massive disruption I am not sure Jody could cope with and isolating us from our current group of friends. This would be utterly devasting for Jody’s quality of life. From my perspective, every member who votes in favour of the Bill will be complicit in wilfully contriving to make the last few years of Jody’s life miserable.
At a macro level, many good people who provide social support will be out of a job, not paying taxes, and possibly reliant on welfare if major reductions occur. The approach and cost of re- establishing state-based foundational supports are also missing from any analysis I have seen supporting the Bill. I suspect the savings to the NDIS the Bill intends to deliver will be offset by these other impacts. It is an exercise in moving money around that achieves precious little financially when looked at in broad terms at a catastrophic personal cost to those impacted.
There are aspects of the Bill I do support. In particular, a crack-down on fraud and unethical behaviour is warranted. I worry the savings are not as big as hoped as the cost of compliance and extra governance will offset savings made by uncovering fraud in the system. I still think it is worth doing – and ensuring punishment acts as an effective deterrent. However, the language and generalisations being used in defence of the Bill have become divisive, causing hurt and abuse to the vast majority of participants and providers who I believe are good, honest people.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 619
In the spirit of making practical suggestions, a letter to participants, providers, and support workers clearly stating their obligation not to defraud the system, what the punishment is, and how to report suspected fraudulent claims would be a low cost but effective action. This simple measure - along with mandatory jail time and lifetime bans for systematic offenders – could be a low-cost approach but does not appear to have been tried (I certainly haven’t received anything).
Further, while we have been using an unregulated open provider (Mable) to find supports for Jody, I reluctantly accept that regulation and certification may be needed to weed out fraudulent operators. This would also provide a way of enforcing standards and codes of conduct.
Before voting on legislation, I implore you take a long hard look at the impact changes to the NDIS will have on the majority of participants and their informal supports who are doing nothing wrong and just want a fair go at having a good life.
Thanks for your time in reading this submission. I hope for your sake you never have to face what Jody and I are going through, but that if you do the supports you need will be there to enable you to continue to have a good and fulfilling life.
Thanks,
Ian.