Submission 2807
Submission: National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
31/5/2026
To whom it may concern,
My name is Rachael I am an advocate for rare diseases, and I am a disabled person.
I am 30 years old. I live in rural North Victoria, and I have grown up with multiple genetic chronic illnesses that have led to me becoming disabled. My daily living, social and quality of life has been severely affected. I myself am not on NDIS.
Before I heard about this announcement, I was getting ready with my Occupational Therapist to start the application process for NDIS so that I may be able to live alone and get a wheelchair. A lot of people with my conditions have been denied NDIS.
I have a lot of friends and family both on NDIS and who work as support workers, and without it they could not afford these supports. The support workers I know also have been able to create a business, having their own hours – meaning some disabled people being able to have jobs. NDIS has also brought in a lot of income and new businesses as well, and I ultimately think it’s a positive thing and can’t understand cutting it when it brings in so much revenue.
I am opposed to this proposed Bill, as I think it will bring so much harm to disabled people, their families, their carers, and to the wider Australian community. As well as actual risk to the lives of disabled people. It will also cost us more in the long term from the impact this will have on a whole generation of people.
I also have a lot of concerns around automated systems and how AI would accurately assess this complex situation that need human care, empathy and compassion.
I don’t think enough thought and time has been put into this bill, considering it is about the whole lives of people. Especially when it has been based around incorrect statistics of how many disabled people are in Australia. Disability is part of everyday life and our society, ultimately everyone will eventually become disabled and it’s extremely common. Cutting the supports of people’s family, their mothers, their friends, their work, etc. is going to put a strain on WHOLE communities.
If a high amount of people are either cut, or their care is reduced to 20% especially with an automated system, changes to Disabled people’s plans who need 24-hour care, and round the clock supervision, for profound disability may result in injury or death.
Last year this devasting thing happened to a boy called Noah. His support workers were reduced, and he had no carer overnight looking at his air tube and it turned off by itself, and as a result, he died.
Submission 2807
This was a preventable loss of someone’s life and is just horrific to hear about.
When we’re talking about cutting any social supports for disabled people, some people will literally not be able to leave their house without assistance. This severely effects quality of life and mental health. I have already heard people talking about Voluntarily assisted dying (VAD)
Why is it okay that disabled people are locked inside and not doing social activities? But the COVID-19 lockdowns were acknowledged to cause extreme mental health issues. Disabled people who rely on carers for hygiene, going to the bathroom, using medical devices such as Ports and catheters, be dressed, get food, and to leave the house, deserve dignity and to be able to continue to do everyday things, and not be scared their care is cut – leaving them stuck not being able to use the toilet for example.
This will cause long-lasting effects, harm, suicide, deaths etc.
When we cut support for neurodivergent children, that places all the unpaid care onto the parents, the early childhood educators, the teachers, and not the people who were previously employed for that specific role. Especially for parents – this leads to unemployment, stress and mental health issues – and potential illness and disability themselves. I am deeply concerned about this. Statistics on NDIS plans show while autistic people are the majority, their plans cost the least amount.
In some neurodivergent conditions like ADHD, not having these fundamental supports like psychology, and carers, can often lead to rage, aggression, and crime in teenage years. which will end up costing taxpayers more money to pay for courts and incarceration.
I know people with ADHD who grew up with no supports – and that lead to them to addiction, diminished learning opportunities and further disability.
The proposed ‘Thriving kids’ program has also not been implemented yet, and I know children who are already being removed from NDIS, if you’re going to be cutting a whole group of vulnerable children off a system – it needs to already be in place or at least have a fully written plan in place – Parents of neurodivergent children have stated they are overwhelmed and have no information.
Other programs for other disabilities either don’t exist or have stopped since NDIS came into play, leading there to be nowhere for people to go once they are cut off. This is especially true in rural areas where I live.
One thing in particular that will affect me personally – in Schedule 1 part 8 under bill – that one must undertake all appropriate treatment’ before accessioning the NDIS under the new changes that’s proposed - but with complex medical conditions causing disability – that is just not realistic and in a lot of cases – extremely invasive, risky and dangerous. My genetic conditions cause me to have allergic reactions, not process or metabolise medications, has paralysed my stomach, and I also have liver issues, constipation and can’t use a lot of medications. I cannot try
Submission 2807
every treatment that is suggested for a multitude of my conditions, some of which could be permanent surgeries on my spine, NJ tubes and ports. My diseases are genetic and cannot be simply treated. Yet it’s one of the main diagnoses that gets rejected from the NDIS – even when it’s supposed to be based on ‘functional capacity.’
I am personally scared, and concerned for my disabled community, especially those of us with poorly understood conditions, children who don’t have a voice, vulnerable members of the disabled community such as those with cerebral palsy, my friends who rely on NDIS for their life saving Psychology sessions, and parents of autistic children. I am scared to start my NDIS application and be turned away, and that my aging parents will continue to be my carer support system.
I acknowledge there are many problems with the NDIS, it has never been perfect, especially with the application system and allocations of funding. There is fraud within the system and people who are taken advantage of, but they are widely NOT the disabled people but are mostly within the businesses who are employing carers. As well as the big corporations who are monopolising and profiteering from the NDIS who are exploiting vulnerable people and families. Cutting those that NEED support doesn’t stop fraud, and frankly has no connection to it, and I believe this is disingenuous of the Government.
Disabled people deserve to live full and dignified lives.
The Amendment Bill in this current form is extremely harmful to the Australian people and should not be passed by parliament, needing time for further review by disabled people, advocates and experts in the field.