National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 40
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Hi, I am a 60yo female NDIS participant with a lifelong psychosocial disability. I also have osteoporosis as a secondary disability. I live on my own in a townhouse and have no informal supports. I don’t use the phone, drive, and I don’t leave the house on my own due to my disability. My Mum is 85 and lives 90 minutes away, and last year my Dad (87) was put in a nursing home 60 minutes from me due to his Alzheimer’s.
I’m extremely concerned about the cruel changes that the government wants to make to the NDIS. This submission is about how the changes will affect me, and my fears for the future. I’m okay with this submission being published on the website, but would like to remain anonymous please.
Where do I start. I am just so fearful of my future now. As a person with disability our lives shouldn’t depend on the mood of the Minister of the day. At what stage does the government take some responsibility for the damage they do? Does the government have any duty of care, it wouldn’t seem so. People will die with these changes.
Reassessments - As I am currently 60, and the government wants us to be reassessed for access to the NDIS over the next 5 years I am very frightened I will be aged out. I started treatment for my psychosocial problems when I was in my 20’s, that was 40 years ago so I have finished treatment and no longer engage with the mental health system due to the trauma they caused. I’m petrified of being forced into mental health services as “Foundational supports”, you can’t have therapy forever! My support via the NDIS has been working for me. For the first time in my life I can get support without having it be part of therapy or “peer support” (which is awful when you’ve finished
treatment) I am finally acceptable as me despite having a disability. I had no support prior to theNDIS and without the NDIS I will have no support again. I will be totally isolated.
Did you know that mental health organisations that the government are consulting with are not consulting with people who have exited the mental health system? I found out because a friend told me about a survey, so I asked the organisation if they were talking to people who’d exited mental health services and they said they hadn’t even thought about it. They are only talking to people who are currently using mental health services or groups. If the NDIS is meant for people with permanent life long disabilities shouldn’t that include people with psychosocial disability who have finished treatment but still have their disability?
New planning frameworks – as someone who has finished treatment I am worried that it doesn’t take our individual situations into account, and I am worried that it will group me in with psychosocial participants who use mental health services and try and force me into using those services again.
Submission 40
On my profile on the NDIA website it says that I live in shared SDA. This is wrong, I have never lived in SDA and have never talked to the NDIS about SDA. I brought this error to the attention of the NDIA via email, my SC phoning, and also a FOI request all back in January of this year but they only changed that I live in shared accommodation, not the bit about it being SDA. I have no idea who, why, or when they originally changed the information to say I lived in shared SDA but if the NDIA has incorrect information wont that affect my planning? Its been 5 months and they haven’t changed it properly, or replied to my FOI trying to find out why it is saying that when I have never even discussed SDA with the NDIS. How is AI going to work when we can’t correct misinformation on the NDIA system? That could have grave consequences for people.
When does the government have to take some responsibility for the harm they do?
Social and community participation – I use my social and community participation funding to visit my parents, go to medical appointments, go shopping for groceries and other essentials, and go for a walk which is essential for my health. My support workers make phone calls for me. When a pipe broke in my kitchen one Saturday recently it was an independent support worker who came over and helped me ring a plumber. These things don’t happen conveniently when I have a shift planned. My support workers organised an urgent dentist visit when I had a bad toothache, that took a phone call one day and then 2 dentist visits over the next 2 weeks. My support worker sat with me when I was due for my annual mammogram and ultrasound, we were at the clinic for over 2 hours. I had cancer previously so its important I have these things.
Cutting my social and community participation in half, or even taking a third, will mean that I can no longer visit my parents. I only visit my Dad once a fortnight as it takes a half day, and Mum once a month as it takes a 3/4 day shift. I need my worker with me, especially visiting Dad in the nursing home with other people around. I can’t visit both parents on the same day as it would be too exhausting for everyone. I don’t use the phone, and Mum and Dad can’t use the internet to keep in touch with me so cutting my funding means I will never see them again. Or if I do I wont be able to do other things like doctors appointments or getting help to call a plumber when there is water pouring out of my kitchen. No more shopping for cheaper groceries, going for a walk in the sunshine, or grabbing a sneaky treat while I’m at the shops (to bring home as I don’t eat in public) You can’t live your life in just 6 or less hours a week.
Cutting my funding in half will leave me in a long term Covid lockdown type scenario, but I don’t have Covid. I’d have to choose between visiting my parents, going to the doctor, grocery shopping … and with workers wanting support shifts of a minimum of 2 hours that means 3 days a week I get to see a human and never on a weekend or public holiday.
I have a long term severe social phobia as part of my disability, so please don’t say that I have to do group activities. That’s just cruel.
Registered providers – I have had registered providers in the past, in fact I still get supports via one now. They are useless. They take advantage of me and push me around more than any independent provider. More than one registered provider has stolen my funding and left me without supports.
I found out by accident that my current registered provider who is paid to have a care manager find supports for me when my workers are away, wasn’t even looking for one! They told me it was quote
Submission 40
“a waste of time” because I had negotiated to pay slightly lower than the maximum. At the same time a support worker I had via that company found me a replacement worker within a day .. with the same company! So the registered company was charging care management fees but not actually doing it! I reported them to Quality and Safeguards and it took 9 months to get a reply, Q&S said they’d keep my complaint on file. Oh, and of course the registered provider promoted the care manager that didn’t do his job, to a supervisory role over my new care manager. Registered providers are the worst. Don’t give them power and control over us, ask any participant and they will have a horror story about registered providers.
Support coordination – As I am on my own and have difficulty communicating with real people I need a support coordinator who gets to know me. I need them to help put supports in place, help sort out problems with supports, and to help me deal with the NDIS. As I don’t use the phone my support coordinator comes out to visit me at my house (when I ask her to) especially when its time to deal with the NDIS, or when I need her to phone a provider to sort out a problem. We can do it together with her on the phone and me in the background directing the conversation.
I’d like to add here that when I have NDIS reviews we always ask the LAC to come out to my house for the meeting, with myself and my support coordinator there, so that I can be involved. I’m too anxious in government buildings, and I don’t use the phone, so we need a way for me to be able to communicate face to face but also be supported. Thus far, the NDIS has cooperated – albeit with a fight – and has allowed my LAC to come to my house for the meetings after we do the safety survey etc. With the reassessments, reviews etc in the future I hope the government will still allow home visits as that’s a disability accommodation that I need, as do many others.
Suspending participant plans – I am very concerned about the proposal to suspend participant plans if a person does not respond to communication from the NDIS. This is particularly worrying for people with psychosocial disability, including myself.
I do not use the phone, so I rely heavily on written communication. If a letter is lost in the mail, an email goes to my spam folder, or I am otherwise unable to respond in time, my supports could be suspended through no fault of my own. This risk becomes even greater when registered providers are not consistently putting supports into my roster, meaning I may not have anyone available to assist me with communication or advocacy. If my funds are cut I have not have any support at all to sort it out.
There have already been tragic examples of what can happen when vulnerable people disengage or are unable to respond. I remember the case of David Harris, a participant with psychosocial disability whose plan was stopped after he could not respond to the NDIS. He was found deceased in his unit months later.
At an absolute minimum, if a participant stops using their funding and is not responding to communication, the NDIS should initiate a welfare check before suspending any plan. Participant safety and wellbeing must come before administrative processes.
When does the government have to take some responsibility for the harm they cause?
Submission 40
Closing statement.
I’m really disappointed in the attitudes of Australian politicians that people with disability are to be used as political footballs, and that they don’t give a damn what happens to us so long as the politician can get a vote out of it. When do the politicians have to take some responsibility? How many people must die or be harmed before politicians say “that’s enough!”
Over the past few years, NDIS participants have increasingly been demonised in political debate and media coverage. Disabled people are constantly portrayed as a burden, a problem, or responsible for the rising cost of the scheme. This has real-world consequences. When participants speak up publicly or comment on social media, we are often met with abuse, including many comments saying disabled people should die or be killed. No group of people should be subjected to that kind of hatred simply for needing support to live their lives. The ongoing negative rhetoric around the NDIS is contributing to fear, stigma, and dehumanisation of disabled Australians.
Politicians are responsible for these attacks on us.
Giving us only 2 weeks to respond to this enquiry is unfair. It doesn’t give us any time to study it properly or get advice. Why is the government rushing this bill through without any checks to see what harm it will do? Did they actually consult with any disabled people?
If the NDIS was any other organisation or private business the people at the top would have been fired by now. Its poorly run, completely mismanaged internally, and the constant changes and commentary that its all-participants fault needs to stop. Its time for the NDIS to clean up its act and start actually supporting people and you don’t do that by harming or killing disabled people.