NDIS Death Bill Submission – Is this Australia in 2026 or Germany in 1938?
Registration
Registration does not give protection, it just makes you money in registration fees. This push to use big providers = less choice over who sees us naked and touches our bodies! Would you like to chose who touches your naked body or leave it up to a big company that sees you as a number? If you are going to push registration, it needs to be simplified and affordable to sole traders and small businesses.
No contact = Cuts
NDIS rarely contact us on our accessible methods on file. Will I get booted off when they continually call me while I sleep or am in appointments, instead of emailing me like is written all over my profile.
Health Minister playing god
Allowing one person (even worse that it is someone with no qualifications for disability) to have complete control of cancelling 99% of a participants funds allows horrific abuse of power. No-one should have authoritarian executive power – there should always be accountability. Where is the separation of power here?!
Blanket cuts across every participant’s plan
It is disgusting to cut funding from people who have been assessed as needing it. Even worse for those that just went to ART or already just had their funding slashed to pieces. People have already died from having their plans cut, and there will be more blood on your hands.
50% community access gone
99% of mine gets used to go to my never-ending appointments. I can think of 3 fun things I have used it for in 13 months! Will Mark come and take me to my appointments or am I expected to go without vital allied health instead? Mark Butler was quoted as complaining about support workers scrolling on their phones – does he know that its not just the disabled person’s friend? Does he know the participant didn’t ask them to do research for them, looking at funny things on the internet to show each other, dealing with NDIS webchat for us so we don’t swear at them for their constant incompetence to answer simple questions. How is punishing disabled people solving this issue? When will the members of parliament scrolling on their phones be punished? Or is it only OK if you use your phone while being paid with public funding?
Research from the ABS – General Social Survey – states that healthy relationships and social connection aren’t just good for us emotionally, they’re protective factors for our mental and overall health. Slashing funding for leaving the house literally just pushes more demand onto hospitals.
Massive internal NDIA waste not being addressed
$800K for a CEO who can’t seem to manage the scheme, $880K for the bigwigs to travel in the era of zoom (while stripping funding to get around for the most vulnerable), $65M+ for lawyers who lose 75%+ of the time and then have to pay for the necessary supports on top of this massive waste of money. Unqualified people not bothering to read reports from specialists and making up funding as they go, which results in more people needing reassessments and the tribunal. These unqualified people do surprise ambush calls instead of planned reassessment meetings. How much money could be saved by just reading the damn reports, actually talking to us with an appointment booked in, and hiring qualified people in the first place?! Hiring labour hire staff to answer phones who have no idea of the answer is a massive waste of money. Just hire qualified staff, and treat them well so you retain them. All the way down to posting up to 7 copies of letters and plans to us is a total waste of ink, paper, postage and admin time. This is where your NDIS savings should start – inside the NDIA building itself! The NDIA must acknowledge the role that systemic inefficiencies, administrative burden, inconsistent decision-making and poor implementation processes have played out in contributing to NDIS cost blowouts.
If NDIS didn’t cut people’s funds when they don’t use them all, people wouldn’t be using them just to avoid them being cut for when they do need them! Money would be saved while still giving people a buffer for flare ups.
Removal of appeals
Put simply – No one person or computer should hold all the power.
Robo-AI Plans
I-can is not valid unless delivered by qualified staff, which of course you don’t have. It is not suitable for neurodivergent people, people with complex or multiple disabilities.
Removal of secondary diagnosis Can you take away my second disability if you are going to take the funds away for it!? The co-morbidities can severely impact the main disability.
Removal of Autistic children
Any late diagnosed autistic adult can tell you how things go when there are no supports early in life. Many of us end up unemployed, depressed, killing ourselves, self-medicating with drugs and alcohol, eating disorders etc. If I had been diagnosed and had the correct early interventions (for autism and other commodities), I would probably be still able to work. The long-term cost of not providing early interventions is a lot more money spent once damage is done, and more deaths. You are literally going to create another lost generation if these changes go though. Please listen to those of us who know how badly things go without early supports.
Redbridge report and slandering the disabled
You could have saved $400K and just asked the people traumatised by the NDIS how money could be saved instead of paying people to tell you how you can get the public and cause harm and death to the disabled.
Unemployment rates and gender bias
Cutting participant funding means less people with disabilities that can work, more carers that have to give up working, and support workers and allied health losing work. Most of the work being expected to be picked up for free will be dumped on women. The result will be women even worse off in retirement as they won’t have built as much superannuation. Not only is this increasing the unemployment rates but its misogynistic as hell. What will the effects be on the economy of such a large number of job losses? The rates of carer and disabled burn out will increase and more suicides, DV and murders will occur. How much blood are you willing to have on your hands?!
Homeless rate
At least 9% of people who are homeless have a disability and require support to stabilise and escape homelessness. Disability is explicitly named as a key represented group in the 2024 Australian Homeless Report and failure to provide specialised services for those people is also named as an explicit factor in driving homelessness for this group.
Signing a blank contract
It is unacceptable to expect to sign a blank contract and add the details in later when people’s lives are on the line.
Rushed bill inaccessible
Trying to rush this bill through in a fraction of the usual time, only seeks to silence the voice of disabled people who have limited capacity to write submissions. I am pushing through burn out and a 2 day migraine to try to get this in on time. The result will be even more burn out.
Selling disabled people out for tax concessions
It has been published that the Coalition is threatening to block this NDIS bill if Albanese doesn’t agree to hold a public enquiry into the CGT and negative gearing proposals. Why are we pawns to use as bargaining chips for rich people to try to keep their welfare. Basic rights, safety, access to support and family wellbeing should not be something traded around behind closed doors while the people affected are literally begging to be heard. Does anyone other than the greens care about harm and death for disabled people?!
Trying all treatments Who decides what treatments must be tried? If we can’t afford them, do only rich disabled people get NDIS supports? How much are we expected to do for a genetic progressive condition with no cure?
CEO able to decide a support isn’t effective if no published, peer-reviewed research
Many effective disability supports do not yet have extensive published and reviewed evidence because disability research is underfunded (especially when it mostly affects women!), participants with complex disability are often excluded from formal studies and highly customised supports are difficult to standardise. This hierarchy also tells the participant that their experience and long term data come last, even if there is strong individualised clinical evidence or a history of positive personal outcomes. It is concerning that supports can be rejected because there is “limited or no published peer-reviewed research”, even where experienced clinicians support the intervention, participants have demonstrated clear benefit, families and support teams provide consistent evidence and the support has prevented decline, crisis or institutionalisation. This fails to reflect the complexity of disability support in real life.
Kicking off over 1600000+ participants
There are no supports to turn to! The proposed Thriving Kids just places further burden on the schools system (while also ripping funds out of schools) and already burnt out parents. Generic parenting programs are not a replacement for disability supports.
Payment Card
What could possibly go wrong? What happens when the card gets stolen and people can’t access supports? What happens when the system goes down? What happens if the card doesn’t work when it should?
Fraud
None of this deals with the loopholes that allow fraud – eg the big providers draining participant’s funding because they are agency managed and don’t get to approve the invoices first. There was no punishment for the people that tried to steal my funding despite me being passed around to about 30 staff members of the NDIS all giving me no real answers but of course all saying different things. Hell they even passed me to my LAC, as if they can do anything. I was the one punished as I lost crucial hours of funding, as well as the stress and sleepless nights it cost me.
NDIS reform advisers brutal assessment
Even your former royal commissioner warns that these changes will leave participants more isolated and segregated.
Ignoring royal commission
Why did we pay for it just to ignore it?
Employment scheme or disability scheme?
I object to a system where the providers and NDIA staff benefit far more than the participants. The value participants receive can be tiny compared to the money being extracted around them. NDIS needs to be protected from exploitation, loopholes, and providers who see disability funding as an endless stream of money. NDIA just hired 2000 new staff and are advertising for staff for graduate programs. How do we have so much money for employing people if we have no money to look after society’s most vulnerable?
Inequality
This bill pushes more back onto the individual -which relies on family having money, actually having healthy family relationships and support, actually having family at all. This is reshaping our countries values away from community and towards more individualism.
Human rights
Do we still have these? The Australian Human Rights commission is concerned with reforms to the right to live independently, be included in the community and make choices about our lives on an equal basis with others. This involves ensuring people with disability have access to personalised, rights-based disability support services that are flexible, self-directed, and responsive to individual needs. Prescriptive models of support that segregate or restrict personal autonomy are incompatible with Article 19 of the UN Convention on the Rights of Persons with Disabilities. The Commission is concerned that NDIS reform is regressing from its legislated, rights-based intent, and is being rushed without transparency or the meaningful involvement of people with disability. Narrowly defined and prescriptive support lists are incompatible with the CRPD and the original intent of the scheme because they restrict individualisation, flexibility and choice or control. Everyone acknowledges the scheme needs some structural reform, but we need to ensure that the human rights principles which underpinned the creation of the NDIS continues to shape its future.
My story
There were so many signs as I was growing up that got missed. By early 20’s I was searching for answers for why I was so fatigued and sore, but the doctors just threw anti-depressants at me. Over 13 years of being gaslit and dismissed before I stumbled across the right health professional who picked up what was going on. Turns out anti-depressants don’t do anything for genetic connective tissue syndromes! I had found my answers but so much damage was done by not knowing and at this point I could not go on pushing through such severe pain and fatigue. I spent a year to get my paperwork together and applied for DSP and got it first go (which is unheard of). I then spent 12 months putting together an NDIS application which is a truly inaccessible experience, especially for someone with no supports to help do it. It was then another 6 months of back and forward with the LAC trying to work out what they thought was missing. I would just get sent a cut and paste from the website, that I had already worked off to put my application together. I tried asking what specialists I need to go to and I would show them the email and see if they could work out what I need, but alas, the LAC would not give me a straight answer. I eventually got the letter than I had been approved for NDIS under early interventions. This seemed ironic given I was late 30’s with a genetic condition that had only been getting worse and it has no cure.
My first year on the scheme has been nothing short of negligent from the NDIA and totally traumatic for me. I wasn’t given support coordination because “that’s your LAC” according to the planner. The LAC has no idea about anything I ask him so I’ve been left on my own to try to work out this complex system for the first time. Near the end of my first year, the planner ignored my profile and called me despite my communication method is listed as email. I of course did not answer the inaccessible phone call and then received a letter to say my plan was being rolled over because “it was working for me”. How would they know? They didn’t bother to ask me, or even contact me in an accessible way. They hadn’t even received any of my reports
because I had my OT take my FCA funding and not bother to send me an FCA and of course all of the specialised OT’s had epic waitlists and I had basically no time to get this sorted. I reported the fraud to the NDIS and between that and the other attempts at getting assistance from the general NDIS email, webchat and support worker making calls, I got passed around to about 30 people in the NDIS with no real answers yet somehow they all told me different things. Hell they even passed me to my LAC! What was he going to do about getting the defrauded funding back?
Thankfully one OT took pity on me when I begged them to reconsider after saying no to me due to them not being specialised in my condition. She was able to get an FCA out with the very limited funding I still had, but it meant I wasn’t able to do the other assessment I was meant to have done with the money. I wasn’t able to access the support in my plan due to a fraudulent OT and the NDIS did not care about helping me at all.
During the several months of dealing with the sleepless nights, stress and anxiety of dealing with this dodgy OT’s fraud, I also had a support worker try to sneak extra hours in. Another of my support workers reported him but why would I bother if nothing was done about the report I did on the OT?
So now its anxiety of not knowing when my assessment will happen. They only funded enough for reports for 2 of my allied health supports, so who knows how long I wait before I actually get any real help, or if I get kicked off before I can even get help!
I am experiencing severe stress with all these unknowns around the NDIS. I am experiencing more flare ups, more burn out, more stress, more anxiety and sleepless nights. I went backwards to gain access and now it might me taken away after only a year.
Supports I need but can’t access
I can’t access the number one thing that improves my mobility and give me more independence because the NDIS seems to think I am asking for a fluffy relaxing pampering massage. I live with a genetic connective tissue syndrome that results in my muscles permanently overworking to make up for the faulty joints etc not doing their job. Without this, I am too stiff to move, my body parts flare up and seize up and I’m much less able to do things for myself. I am stuck going to a student clinic as I can’t afford professional prices without funding. This is hit and miss and I don’t always get the standard I require to function as much as I can. It is at times that don’t suit my sleep patterns so it messes up my sleep cycle, and I need a support worker to drive to navigate the city and parking. I struggle with the constant noise of a busy student clinic and having to advocate for myself every appointment.
I also have in my plan that I need help with meal prep, but because the word “delivery” isn’t in there, I can’t access meal delivery. This is despite me having a tiny kitchen for anyone to be bulk cooking in, I don’t cope with many hours around people, and it creates more work for me with planning and shopping. Not to mention that I’ve had support workers manage to ruin expensive allergy friendly packet mix cakes!
There are far too many unsafe gaps, burnout, trauma and carrying far too much in this system and these changes will only make that worse!
What these changes mean for people like me
Losing individualised, holistic support that actually works, being shoved into one diagnostic box with no recognition of intersecting disabilities, mental health, trauma, chronic illness or fluctuating capacity. Being forced through assessment processes again under systems that are already inaccessible, inconsistent and harmful. Trying to compress an entire human life into tick boxes and functional impairment categories. All while decisions with life-altering consequences are increasingly being placed in the hands of planners who are not qualified to make complex clinical determinations about disability, mental health, neurodivergence, trauma or capacity. That is unsafe. Disabled people do not exist in isolation from poverty, gendered violence, parenting, housing insecurity, health conditions, discrimination or systemic barriers. When government reduce people down to simplified “functional impairment” categories, real people fall through the cracks.
Summary
understand that using tax money to fund programs that support the community is literally the entire point of having a government!
So much for “no-one left behind” – we have been completely blind-sided by this government. Why are we not taxing gas, billionaires, Gina etc more instead of targeting society’s most vulnerable? If we can’t afford the NDIS, we can’t afford politician’s perks. Why aren’t you tightening your own belt’s before coming after disabled people? Why can we afford money for Israel and war to create new disabled people when we apparently can’t afford the people who are already disabled? Most of us are already too scared to push for a reassessment because so many plans are being slashed and cancelled already! Why is this happening before this bill has even passed?!
Killing us off is one way to save money, but I don’t think its the moral one! So I ask again, is this Australia in 2026 or Germany in 1938?