National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 139
To Whom It May Concern,
As a severely disabled person and NDIS participant, I am utterly dismayed by the government’s decision to cut funding to the NDIS by such a broad amount in such a punitive manner. These cuts and legislative changes will not only cause suffering to participants of the scheme, it will also not address the sources of the problem the government is claiming it is somehow going to fix. In failing to address those problems at their root cause and instead restrict access and care for participants, it will also kill and harm more vulnerable people. The NDIS in its current form is already killing people, and thousands more are suffering under it needlessly at present.
The proposed changes that Mark Butler wishes to enact with regards to the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 legislation will be disastrous for those of us with complex care needs. Not having proper choice and control over who I allow into my private world at all feels like a complete violation, and goes directly against the United Nations Convention on the Rights for Persons with Disabilities. Not being able to choose if or when I can leave the house for social and community participation makes me feel like a second-class citizen, and once again goes against the UNCRPD.
The ability in the proposed legislation that gives the health minister the capability for discretionary decisions outside of the legislation is also concerning. What is the point of having legislation set up in the first place if it can seemingly be overridden at any time by the minister for health? At this stage, many of us in the disability community do not trust that the government (especially the current health minister) has our best interests at heart - we have seen too many people dying due to lack of funding, or negligence stemming from inadequate supports. How will this legislation ensure the safety of current and future participants, enacting guard rails that protect us from further harm?
This legislation also feels very paternalistic, as if you think the individuals within the disability community don’t know what is right for our own specific needs and circumstances. It removes choice and control from disabled people and instead leaves it in the hands of whichever government is in power at the time. The framing of this legislation as a cost sustainability issue to ensure access for future generations of disabled people means very little if it is killing off the existing cohort of disabled people, surely. If the current legislation is enacted, these harms will also continue, impacting the seemingly very few people who end up being able to access the scheme in the future.
This is the narrative the government has encouraged over the past few years, both actively and passively. The vilification and targeting of disabled people from this government for the “economic blow-out” of the NDIS caused by the poor implementation of the scheme by this government, and the previous LNP government. And yet despite the participants of this scheme having no control over how the NDIS was originally established, we are the ones who bear the brunt of the harms that are being enacted by this legislation. We bear scorn and paternalism from this government, we bear constant questions of legitimacy from the media, and we bear
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 139
anger and hatred from the general population. This barrage of blame being foisted upon us has set back disability awareness, understanding, and inclusion beyond decades, and has contributed to an immense feeling of hopelessness and fear for myself and many of my disabled peers.
Whenever a group of people is deemed less valuable or less important by society, they become vulnerable to abuse, neglect, discrimination and exploitation. We’ve seen this. We had an entire royal commission on this that had thousands of submissions by, for, and about disabled people (with very few of the recommendations from that commission adopted, I might add.) Stereotypes, misinformation and a general lack of interest all contribute to a culture of ignorance where disabled people are viewed as a single, homogenous group, rather than as individuals, with individual feelings, goals and needs. But we aren’t a homogenous group, and to treat us as such in this legislation is not only doing us a disservice, it is incredibly harmful.
Disabled people are worth whatever cost or resources are needed to keep us alive and thriving. We are worth it even if we don’t contribute to the economy. We are worth it even if we will need extra support and resources for every day of our lives. We are worth it even if we spend all of our lives indoors. None of it is wasted. Time, effort, money, resources spent on a life are not wasted. There’s no meaningful point, some arbitrary threshold where you can say “okay, this is enough. After this cost it’s not worth it.” We are always worth it. This is the social contract the NDIS was founded upon. That we are deserving of the same rights as a person without a disability. That all lives are worthy of the same level of dignity, access and respect. That disabled people deserve it just as much. That our lives are not lesser, that we shouldn’t be locked up in institutions or separated away from greater society in group programs. That we are an integral part of the Australian community.
By giving Mr Butler the power to enact sweeping cuts to all participants’ budgets at once, you are saying that our lives are worth less, and that we shouldn’t be seen in society. That we shouldn’t have access to a grocery shop, or we can’t have support to go see our own doctors or medical appointments, or to simply have a coffee with a friend. You’re not looking at the complexity of an individuals’ needs, and are instead saying that disabled people are a monolith - and that all of us will be forced to sacrifice basic access to society (again, a human right according to the UNCRPD) in order to balance the budget.
I myself am currently lucky enough to have some informal supports to help out, but they are already burning themselves out taking care of me when my formal supports are not available, as I am not funded for 24/7 support. I recognise the hard work it takes both in physical and mental load to look after someone with complex disability needs. I know my worth most of the time, and I know I deserve that access and care, but it can’t all fall to my husband to do everything outside of my support worker hours. He needs to sleep, he needs to have his own life too. He can’t be a carer 24/7 without the extreme compassion fatigue and burnout that is so prevalent when you care for people with disabilities severe enough for the NDIS. That is how you end up with situations like with Leon and Otis Clune, where carers feel unheard and misunderstood, and can
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 139
end up making decisions that harm the very disabled people who are relying on them for care. Expecting families to magically figure it out on their own with very few or no support systems is the antithesis of a “fair go” and “mateship” that I’ve always been told exist in this country.
The NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 that is currently under senate inquiry will kill even more people should it be passed. Please know that. Anyone who votes for it will have blood on their hands. We deserve to live as much as anyone else in Australian society. One in five people in Australia live with some form of a disability - that’s over 5 million people. We are a significant part of the population, a population with voting power that shouldn’t be ignored or treated with the lack of humanity displayed by this government. We deserve to thrive, not just survive. And if you can’t do it for us, just remember - unless you die young, everyone becomes disabled at some point in their lives. How would you want to be treated if this were affecting you?
Please consider the harms you will be enabling with the passage of this legislation.