National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1308
Submission
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by
Mother of a complex needs participant
I write this submission out of the fear that my son will become a casualty of the cuts to the NDIS, in a bid to bring the funding spree under control.
I will attempt to make this submission brief, however that does not underutilise that brevity of what it takes to care for my son.
I did the mainstream caring for him for the most part of 14 years before that became too much, and handed the reigns to his father. His father being a strong, stoic man, took this role on with gusto, only to be worn down quite quickly by his son.
Our son has what can only be described as the most profoundly severely affected disability of severe Intellectual Impairment comorbidly affected with level 3 nonverbal Autism. He has Epilepsy also, and is only now at the age of 19 learning to use the toilet for his number 1’s. So you could say he is technically still incontinent. He has no way of communicating that an epileptic episode is about to happen and may drop to the floor without warning. Or worse, fall face first. It’s quite scary.
Our son often doesn’t sleep during the night; he wakes when he wants to - despite taking sleep medication. This led to severe carer sleep deprivation in what I could only describe as over years of living this - worse than when you bring home a new born baby. I can remember in 2018 the NDIA wanting to argue with me over whether I needed just one night of overnight support per week - just one night - to guarantee me to have a night of sleep!!! I couldn’t tell them which night my son may sleep through the night, if that.
Anyway, I said I would keep this brief. Back to it.. I burnt out.. I handed him to his father and said my goodbyes…. It was dreadful - I still see my son, but of course its not the same.. His father became near suicidal according to the reports at one stage, before finally getting some decent respite care for our son.
Fast forward now to where our son is thriving in the arrangement that his father has worked hard to his credit to get. He has a good package of supports that appear to be working. He NEEDS 2:1 support workers all the time, else he can not be taken out in public due to the risk of harm to others and the support workers. He NEEDS 2:1 support at home (in the SIL) house, due to the risk of harm to the support workers. And he needs this at night also (one worker sleeps the other is AWAKE - because if my son wakes - he can not go and wake up a worker to tell them he is awake - he does not speak!)
Now the changes that are proposed are to a Commissioned SIL model that prioritises standardisation over individual complexities. This means that they want to make things “standardised” by saying this will be fairer for all participants using this funding. But in essence, what will happen is that reports won’t be read, it will become “ algorithmic” or assessment based budgeting and “cost containment” rather than highly negotiated individual packages.
These participants are THE VERY PARTICIPANTS that the NDIS set out to first protect. As MP Mark Butler was quoted in the attached Guardian article - this was an easy target group in order to make super quick savings. How dare they cost so much to care for after all!!!!!!!
I wrote to MP Butler who referred this to the NDIA directly - I did not identify my son but they chose to so find that out anyway. I received a response that stated that the “NDIA will continue to ensure every participant has access to the disability related supports they require. When
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1308
making funding decisions, NDIA delegates assess all the relevant information and evidence provided including professional opinions and reports, to make informed decisions in line with the funding criteria in the NDIS Act, NDIS Rules and relevant operational guidelines.”
The NDIA’s response to making this cut was that the funding was “no longer necessary.” Nothing else. Despite all of the evidence. Despite the quote above, planners are being told to make the cuts to every participant’s plans, no matter who they are. No matter if they are one of the 5% costing the NDIS the most because they are one of the participants that need it the most - the most disabled and the ones the scheme was originally designed for. Cut their plans to, no matter if it puts their safety at risk as well.
One thing that is never written about in any of these changes is the words “risk management”. I have seen where the Minister must consider the “safety of participants when considering whether to cut the funding of an entire group of participants for social and community participation - just a generic general statement. Coming from a professional background where the words RISK MANAGEMENT was common - the NDIA doesn’t have a clue about this!!!! And its all about “cost
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1308
effectiveness”, “value for money” (sorry but can’t you find a support worker who will do it cheaper never mind that your son is very high needs!) and “Scheme Sustainability”.
Now back to my son, who only a month ago had a night when he was up all night, but somehow now the NDIA think its ok to reduce his overnight supports. He is regularly up during the night - it is not just the odd occasion. It is a high risk to be managed. But they feel it is a risk they are willing to play with my sons health and safety, and that of the support worker. All in the name of the cost cutting that BUTLER first stated was TOO MUCH money - the 5% of participants at the top of the pyramid. The very participants who NEED the support. The very participants who this scheme was first designed by Julia Gillard to protect. When I can finally see my son living happy, and with a provider who is moving forward and not just turning up to be paid, this is what the NDIA want to do. Always looking to cut the budget - what will happen now is that my son will end up being given his RESTRICTIVE PRACTICE medication more frequently when the SOLE support worker with him on his overnight shift can not manage his behaviours on their own. He then becomes more sedated during the day; less involved in life. His toileting will regress - come on - he’s only 19 - why rush these things after all!!!!
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1308
Seriously I invite anyone who wants to cut the funding to come and meet with my son - guarantee you will not walk out without a tear in your eye!
I apologise if this submission is a bit disjointed - having to deal with not only the Federal budget, but the NDIA budget announcement and my own son’s NDIS plan all at once has taken an emotional toll. I have been busy advocating to help get the word out to other families with regards to changes for Independent Support Workers also (which I started doing once my son left my home - helping them to understand the changes). My spoons are full as you would say. But thank you for reading.