SENATE SUBMISSION
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
ABOUT US
I am the mother of 15 year-old, delightful young man with Cri du Chat Syndrome. It is a random genetic condition. Because it occurs at the cellular level at conception or shortly thereafter, his “missing” chromosomal piece affected all areas of his development in utero resulting in lifelong, permanent and severe disability.
My son is not just his diagnosis – he is funny, very kind and I love him with everything because he’s my child.
However, he has very high needs and high needs often are accompanied by very challenging behavioural aspects, which makes sense when you think about how hard the world can be for my young man.
Our son has an IQ assessed at a severely low level (20-35) and struggles with intellectual, physical, sensory and emotional impairments. He has a significant sleep disorder. He is incontinent and struggles to do anything without assistance including eat. I still cut his food up and feed him. He finds the world completely confusing and overwhelming. His entire life is scaffolded by his parents and modified, edited, redacted and sheltered in order to enable him to cope. It is the only way to reduce harmful and distressing behaviours.
This has been so successful due to the NDIS, which has funded core supports for him allowing regular support workers to assist him.
We couldn’t live without the NDIS, and we are beyond grateful to live in Australia.
We are productive taxpayers as a result and our son’s typical siblings (2 younger sisters), are thriving, ready to contribute to the next generation because their homelife is stable and they can love their brother more easily because of this stability.
While his syndrome is reasonably rare, there are many similar ‘rare’ conditions in the world.
Therefore, when the NDIS was introduced, his condition, along with other rare syndromes, was recognized as being an automatic acceptance – because like other rare syndrome groups, it was acknowledged that his needs were severe, permanent and lifelong.
He was the very person the scheme was designed to help.
And it has helped so much. Please don’t take that away for families when there are so many other ways to make savings that don’t involve depriving a person with a disability, or their carer/s.
WHY AM I CONCERNED ABOUT THE BILL?
These proposed changes are so concerning.
We, like other families, stand the most to lose if the NDIS isn’t sustainable. We all want the same thing. However, the means to achieve the necessary cost savings, are in my respectful opinion, being approached from the wrong angles, designed and implemented by those not living the reality and will ultimately not deliver the expected cost savings. Further they are empowering others to
take a negative attitude to those in the community with disabilities, especially during a cost of living crisis. Language and attitude matters. By targeting people with a disability as the primary means of cost savings, it sends a clear message to the non-disabled persons either gaming, or bloating the system that they are not the focus. When they are exactly the persons on whom focus should be placed.
We have to do the hard things now – addressing the real root issues including
an unregulated provider industry lacking guidance and clarity in relation to the Price Guide (have you ever heard of a doctor charging less than the Medicare schedule? Of course not – this is what happens if you don’t provide strict guidance around charging rates; a lack of enforcement for wrong-doing (noting that is in 99% of misconduct is by a non disabled person i.e service provider, support coordinator, nominee An agency that has gross inefficiencies that I could elaborate on, should you wish to know more
SPECIFIC CONCERNS
The 50% cut to social and community participation funding
I have always had concern with the way this category is framed. It does not describe the essential breadth of services that fall within it. It sounds like it’s just support workers taking people to bowling and movies. It is so much more than that, and planners have treated it as such when creating and implementing plans.
Please look at all the price guide categories and you will see the raft of essential supports that get captured under ‘Social and community participation’. It has also, for a number of years, seemingly been the go-to bucket to fund essential care when that care did not fit into more rigid categories.
Because it was always in the broader “core” category, and that was flexible across categories, planners have in my opinion, seemed to treat as a catch all. Now that is coming back to bite participants through no fault of their own.
This category encompasses
Care when parents are at work and the child might be offsite rather than in the home so that parents can work Day programs for adults with disabilities Supervised care outside of the house
Reducing this arbitrarily will do great harm.
The cost savings really will be much lower than you anticipate and it won’t address the root case of the cost ballooning.
Broadened parental responsibility extending into adulthood
The Bill expands what is considered parental responsibility and appears to extend this expectation into adulthood. As much as I love and adore our son, his needs are beyond one person or even one family. I have 2 “typical” daughters (younger) and want to convey to the committee that they have not had one day in their typical lives, that has come close to living a day that is the same as
parenting my son. When he was younger I would argue it was even harder as I was completely out of my depth. I felt like I was drowning.
Even on my “typical” kids’ hardest days – broken bones, sickness, tantrums – the usual ‘child’ things the mental and physical load as a parent is, humbly, so straightforward in comparison. It follows predictability and there is a raft of invisible societal help systems in place that people don’t even realise they benefit from in the “typical” world – daycare from 6-6, before and after school care, school, sporting and social events, other parents via playdates, ride sharing to sport etc.. None of this exists for our son. It is like living in an alternative-reality.
I recall during the Covid era, being emotional because so many families were outraged and lost when their child care centres and schools closed for short periods of time. How would they work? How would they function? How would they make enough money to pay their mortgage? Yet this is what people caring for complex conditions face every day. Mainstream services are not available to them. It isn’t just for a 7-day lockdown. It is for life.
Even before NDIS, there was a feeling when I had my son, that agencies already knew that carers needed support and that concepts like respite were accepted. How can any person function from broken sleep for years on end without a break? I am not sure when this changed and why the attitude is more and more parental responsibility.
SUGGESTIONS
Please listen to people with a disability, and also please listen to their carers. I ask this on both compassionate and economic grounds.
Having met carers over the years I realise they are a resilient and resourceful group. They have to be.
If you aren’t a bleeding heart, then look at the numbers. Tax payers will end up paying more in crisis management – heartbreaking scenarios where people become wards of the state, or via increased pressure on mental health and hospital systems.
I am a dual-degree educated lawyer (honours). I don’t need much sleep and am a reasonably higher achiever. I do not have any underlying mental health conditions and I have been financially stable including before his arrival – and yet I have nearly broken under the weight of my son’s care especially pre-NDIS.
Reducing people’s plans in an arbitrary fashion is not the way to approach cost savings.
It feels like such an easy target – hit the people who literally, like my son, cannot even write his name to tell you how much this would affect him.
I have observed, so many deep inefficiencies with both the department and the fundamental structure of certain aspects of the NDIS. Reducing these could save millions.
Please allow carers like us to show you these inefficiencies. Further, there are so many ways to save when implementing plans, I just do not have the space here to identify those.
NEXT STEPS
I apologise that this submission isn’t as articulate as I would like. It is 11.30pm and I am writing this after work now that my son is asleep – he is likely to wake at 1am again. But this submission was important to me and the time frame was tight, so I take the attitude that it better to write from the heart and share my thoughts than stay silent. I hope you will forgive my writing and look to the intent of my message.
I would welcome the opportunity to a) speak more on this topic articulately and b) offer genuine suggestions for costs savings and improvements in the regime without taking the steps in this bill. Please don’t take steps that look easy or as though they can be applied in ‘bulk’. I guarantee you will not save the money you expect to, and all it will do will shift costs to other taxpayer funded areas, break people caught up the system truly risking life or endangering persons with disabilities and/or even further erode the trust of those interacting with the system.
History consistently tells us that quick fixes and bulk untailored solutions that seem simple, when responding to nuanced and complex problems, are rarely successful. Let’s not repeat the mistakes of the past. Let’s work to make this scheme truly sustainable and one that really meets the vision. We are nearly there – let’s not knee jerk and wind all of that back.
Thank you for reading.