National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1708
Dear ministers,
Re Community…/NDISFutureGenBill… Nationá al Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 APH.GOV.AU National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is , i worked hard all my life, until disability stopped me in my tracks. I live with secondary progressive Multiple Sclerosis, a very unstable urinary catheter, type two repository failure caused by my MS hug, which stops me having surgery. So having physical assistance to help manage my intimate personal care and catheter issues is actually life and death for me, as complications fixed by surgery will most likely kill me. Any one of us can become disabled overnight, it’s not somthing anyone plans.
I used to volunteer coach at multiple communities groups, until my social and participation funding got cut last plan review and my physical needs during the day use more funding than I have, which leads me to having to stay outside in my wheelchair multiple times a week when my catheter takes up to much funding and I have run out of hours to have support to go to bed. This is making me feel like I’m not even human anymore.
After ending up in hospital in a coma and spending 11 months in hospital, I was discharged without medical support as the hospitals consider me untreatable because my breathing prevents, surgery, treatments and tests. So the new rules about people having done every available treatment, will lead to people like me falling through the cracks and not getting adequate treatment or care. Already I have attended over 40 appointments to be told I’m too disabled to be able to have the X-ray, lung function test, bladder scans ect. That the rooms with the equipment are not wheelchair accessible. So if you can’t walk and sit on a normal chair then they can’t help you. So our medical system is not inclusive and people with disabilities are going to be punished for an inaccessible system by having supports further removed. This is going to lead to so many preventable deaths.
I had lost my previous team of support workers and was knocked back by all the registered agencies and nursing agencies because I was too complex, and don’t have the medical plans to follow the NDIS high intensity rules, because my symptoms means mean I’m often having medical emergencies but I can’t have treatment so we just have to manage them. SO it was unregistered providers and independent support workers that have stepped up to the plate and been trained in my unique situation and care around my catheter, and ventilator ect. I have one Registered nurse that has a full time job at a hospital but she has been kind enough to take on catheter changes and training the staff I have chooses to trust. It’s these people that have been keeping me alive. I have never experienced fraud from them. But I have experienced fraud from support co
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1708
ordinators, wheelchair repair companies many times over. And when you report the fraud, nothing happens. So why are we not concentrating on following up all the complaints of fraud, as that would weed out the bad providers both registered and unregistered.
After suffering severe neglect in the hospital system, I really struggle with being touched and supported. So having the choice to have the same small groups of support workers that I manage my rosters and shifts myself, helps to give me some sense of control over my body, even though I can’t do basic tasks without help. Complex clients like me need the freedom to use unregistered providers, so we can choose people who actually have other jobs but can have the flexibility to meet my complex needs that can change to dangerous quickly. I need them trained in my individualized care needs as the generic training is not appropriate. They would be writing incident reports every shift.
Please don’t pass this bill with all its very big flaws that will lead to people dying. Please don’t restrict who we can use for support as it’s already hard to keep an excellent team. Please don’t make registration mandatory for personal care for people that can manage their own rostering and organise their own training for staff.
Social and community participation is important to allow people to work and be part of society, it’s important for not only people with disabilities but the wider communities that get great volunteers.
I already had my social and community participation halved last plan review. Every day since that plan review I have considered taking my life. As having to go 7 or more hours covered in blood, urine and bowel excrement, and in extreme pain because my catheter is in the wrong position and causing severe spasms and blood vessels to burst. Being unable to fix my catheter or get changed and cleaned up makes me feel like I’m no longer human. If I want to Contribute to society I have to choose to miss out on personal care, meals and going to bed. As I can’t contribute to society without someone’s 1:1 help with catheter adjustments, flushing and helping clean up after the catheter causing me to be covered in all bodily fluids. No wants anyone to be around them or in their club rooms ect if you are bleeding or leaking urine ect all over their floors. It’s completely humiliating. With 1:1 support I can contribute to society still, which gives me a sense of purpose and makes it possible for me to coach for community groups. I still have a lot of knowledge that I can share from in my wheelchair. I’m am not someone who would ever engage with a group disability activity. Requiring constant supervision to be safe, and so much intimate assistance with my catheter, I would not be safe to go to a group program and not have 1:1 care. Those types of programs don’t suit everyone with a disability and stop people from being able to engage with meaningful work and community engagement.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1708
Please ensure Self-management/ and plan managed participants can continue to self direct their supports. Make sure my workers don’t have to register. And that we can continue to manage our own support for personal care in our own home. As I get much better care and no dishonesty and money grabbing from unregistered providers that take on shifts because they care about providing a quality service. They are more flexible without charging late cancellation fees. A Because they are not full time carers they are not burnt out like some of the agency staff I see treat clients so badly in my volunteer roles, the agency staff are on the phone to India the whole time the client is engaged in programs, they don’t cheer them on, or dress them appropriately. Please insure we can continue to choose who provides intimate care. Because I will be forced to take my own life if I can’t have care from people who make me feel safe.
No Minister’s should have the power to cut funding without appeal (s 34A). These decisions should be being made by trained allied health professionals and the people making the decisions should have had to have met the person or people involved. All decisions should by run by a team of people, to increase the chance of big errors being picked up.
Automated decisions and algorithms with no individual appeal. Will kill people who have rare conditions, and unstable conditions as AI cannot possibly capture that level of complexity. Please consider that even though all my medical reports and OT functional assessment say I should have 24/7 1:1, and 2:1 for catheter changes, that is not the funding a receive and as a result I suffer from avoidable pain and health risks and am in unsafe situations everyday. Because the planners can’t read the reports properly and can’t understand real risk when it’s highlighted. AI will make this even worse, for people who don’t fit neatly into boxes. It will never be able to capture complex clients needs.
If I was forced into a sils group home, I wouldn’t be able to afford my medications as they currently cost me $300 a week out of my pension. And then I would still need 1:1 funding because of the personal intimate nature of much of my care needs. And no registered provider would take me because I’m not funded 2:1 for the catheter support and that puts their staff at risk. So it would cost twice as much money for me to be in a sils group home, and I would fall through the gaps of care because not enough staff would be trained in my unstable catheter so I would be sent to emergency all the time. But this is what planners are suggesting.
Complex clients need to be able to hire and train staff to know their care needs in depth, and using unregistered providers and independent support workers allows us to hire nurses and train people in our physical needs, for a lot less money. We just want care to feel human and function and not be scared of the risk of dying. We want to be able to contribute to society and connect in meaningful ways.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1708
Please consider that none of us choose to become disabled, and we are already fighting hard everyday to exist and contribute to the world in a meaningful way. Good supports are life changing and allow people to make the best out of their challenging situations. Please don’t remove choice and control from participants. If participants have small teams of workers, That they are self directing, they are lower risk, because they would just sack anyone they didn’t do the job to high standards.
Please don’t pass this bill without further consideration of the potential damage it can do. The system is not perfect but reform should be informed by those it will affect the most. Registration does not stop fraud, following up on complaints of fraud would be a better approach. Everyone wants to see the bad providers leave the industry so that all the good work and positive changes the NDIS has fostered can be highlighted instead. As there are many providers and individuals carers out there doing amazing work with clients that 100 percent is positively life changing. Many of us would already be dead without the support we have recieved and I’m certainly in that group. Cheers Zia Happy to meet any MP’s in person so they can see first hand what life is like as a wheelchair bound disabled person.