Submission 1899
SUBMISSION TO THE NDIS BILL INQUIRY 29th May 2026
What the NDIS means to me right now
I have two out of four children currently on the NDIS. NDIS supports have changed our lives from a family in crisis barely able to make it through each day and unthinkable that we could continue for much longer, to now, we have made structural changes to how we live and manage our family that, although they were largely personally driven and funded, could not have happened without having NDIS supports.
We began access in 2022 and now in 2026, our family, although we have been through a lot and still have a workload literally double any other 4 child family without disability, we can manage, and positive relationships have been restored amongst all siblings, parents are slowly recovering from burnout, and the children with disabilities are stable in themselves and gradually starting to pass milestones that were impossible for them previously.
How I feel about the proposed changes to the NDIS Act
Changes to definition of parental responsibility
This one worries me the most – I had to go through ART to get a suitable plan for one of my children and the NDIS definitions are so out of touch with how families live. I asked sensible questions like how many hours a day is a parent supposed to provide 1:1 care of a child, and at what level of intensity (e.g. de-escalating a meltdown being one of the highest levels of intensity). The load on parents is not quantified, and the wording in the proposed bill that tries to increase the scope of parents’ labour by making it ‘substantive care’ is a move in the wrong direction.
We need to get real about what parents can and can’t do – and we need to get real about how carers do get burnt out and the negative impact that has on those they care for – and that parental care is cheap disability support from a governmental perspective – so sustaining parents is not only essential to care for disabled children but it is the most cost effective way to provide supports. A clearer and fairer definition of what parents should and shouldn’t have to do is welcome, but blurring the lines by insisting that high level disability care 24/7 is reasonable is just going undermine the whole system.
Planned reduction in number of people on the scheme
I am worried that my children may at some point no longer be eligible for the scheme depending on how this is assessed. This would be devastating not only for me but for my children who need a system that believes in their right to have a life, and not just allow them to exist in isolation and misery. They don’t even have to have a life that is on par with children without a disability but I just don’t want to see them slip into a space of not coping and not enjoying life and being marginalised because of their higher level of need not being deemed important to support.
I am also devastated to think of the more than 1 in 3 people with disabilities (350,000 out of 944,000 as Senator Jordan Steele-John found out) who will be denied access to supports when they would have otherwise been eligible. Why? The ‘cost saving’ is not really going to save anything – poverty, mental health issues, poor quality of life, poor quality of health will all cost not just the government, but society. Marginalising disabled people is not a forward move for society. The planned spend is well worth the money in my opinion. And some weird public opinions have swayed the public narrative that somehow, the disabled should carry the cost
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cutting when there are so many other places to find $15b – gas taxes for one. Taxing the rich for another. Just get on with that instead.
Use of standardised functional capacity assessments
I have heard that the proposed tool for assessments has not even been tested AT ALL on psycho-social disabilities. Which doesn’t surprise me. My experience with the NDIS has shown me that it is geared towards physical disabilities. This is a serious oversight. Any tool that is used as a standardised assessment needs to have robust evidence of its efficacy on the target groups that it will be used on, and a clear wrap around system that will have suitably qualified people interpreting it and applying it correctly.
Negative anti-disability attitudes
One of the things that has shocked me the most is the pervasive views about disabled people akin to the old ‘dole bludger’ mentality. Nobody chooses to be disabled, and literally anyone can become disabled at any point. No mother births a disabled child out of choice. It feels like society has forgotten this, being disabled is an unwanted burden and those who carry it deserve extra love and care to balance that burden. If anything, people with disabilities need continuous respect and care and deep understanding for their vulnerability in needing help.
When I hear the conversation about disability, it seems like people have forgotten what it means to be disabled and to need that help.
When I think about the bad old days of Centrelink where just putting in an application for a support payment, allowance or other support meant that you were subjected to negative attitudes, marginalisation, long wait times and really poor service ………. These days are long gone for Centrelink. Now, Centrelink is professional, neutral, you can walk in there, call up, or easily use online services to access support at whatever stage of life you need it without any judgement. Your need for help is expected and understood. My mind boggles that the NDIS is starting where Centerlink was 30 years ago. I recently spoke to someone who worked for Services Australia for decades and they voiced that they cannot understand how the NDIS gets away with their sensibilities. I couldn’t agree more from my experience. And as shocking as it is that these attitudes pervade within NDIS, seeing the general discussion and narrative and now this bill evolve outside the NDIS is even more shocking. Please politicians, can you remember that it could be you, your mother, your sister, your son who becomes disabled, out of the blue?
My son got Type 1 diabetes 2 years ago to add to his already complex picture. It happens just like that. One day you’re fine. The next day you’re not. Have compassion and be sincere.
Poor understanding of impacts on families and carers
What I have found in dealing with the NDIS is that there is almost no understanding that when a family needs a high level of support, it is because they are under extreme duress. Instead, the bureaucratic system is set in motion to make it as difficult as possible for that family to access supports for their loved one. Only the most desperate and vulnerable of families push ahead and keep going subjecting themselves to more and more trauma.
For example, I am spending my previous free hours putting this submission together. Not only do I have less free time than a non-carer has and much higher levels of burnout. But to try to ensure that there is a system that supports my children and all other families like ours, I have to put in extra hours of fight wherever I possibly can. This is a burden that families without caring
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responsibilities don’t even have to think about, let alone spend hours of their lives dedicated to changing.
There are thousands of families you won’t hear from because they just couldn’t put together a submission this week even if they might have really wanted to.
Their silence becomes the social licence to take action that hurts them and their loved ones. I beg you to consider this in all you do.
Worsening care for children
One of the things that worries me the most is that I think the government with all their statistics has misinterpreted the data. The increasing access to the NDIS for supports for autism in particular is not just families flocking to the one honeypot to access all these luxuries and treasure. There is genuinely an increasing level of need out there. It is farcical to think that Thriving Kids will address that need to the extent expected.
Currently, we already are hearing of stories where families who can’t cope with their child’s disability are being told that they will be referred to chid safety for assessment because they clearly aren’t parenting well enough. My family were also told to access Safe Families when my disabled child’s behaviour was out of control. To which we were rightly told that it was a disability issue.
Ignoring the scale and level of disability in children and their needs is a direct contradiction to our societal responsibility to safeguarding children.
You can guarantee that if you reduce disability funding for children, you will reduce the care and supports they are getting which will increase the pressure on families. When families break and they need to surrender their children then all of a sudden it gets a lot more expensive and complicated for government.
The absolute best way to prevent all this is to ensure children, and families, have the support the need in the first place.
It makes no sense to wind this back when the need is ramping up. One way or another the government will find out, but if you listen to people like me, you can know now, and act.
Impact of reducing or removing community and social supports
These supports are the supports that move the needle for our family in a way that nothing else does. Seeing an allied health professional at well over $200 an hour weekly or fortnightly will give our child some small strategy that we then need to spend hours implementing to see what transformation it might make. By comparison, if that same $200 plus is spent on my child having 3-4 hours with an adult who is not their parent, who is fresh and there just for them, who can take them to do something that they otherwise wouldn’t get to do, all the while modelling things that they need to learn, helping them regulate their nervous system in ways that struggling burnt out parents aren’t capable of. Meanwhile, the rest of the family gets to have a breather from the intensity of the 1:1 care, the loud noises, the high level of emotions, the feeling of just living in survival that pervades the house most of the time. We get to eat a meal together, make some jokes. We might even be able to go out of the house for a little while.
You will hear the same from so many families, but even with community and social supports, we’re not bathing in some luxurious life where we have live-in help so that we get to swan around
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doing nothing while the paid help does all the work. We get just enough of a breather that we can come back to centre just a little bit. Enough to just be ready to launch into the next day. Families like ours can’t think in weeks or months, but to just know that you’ll probably make it through to the next day with the whole family going at least ‘ok’ is an awesome gift sometimes.
I think it’s wise to be aware of how much of these supports people have and what they are using them for. As always, a sensitive and nuanced approach is required, rather than just a blunt instrument that strips away people’s access to these essential and life giving supports.
Removing these supports at a large scale misses the point that the goal of the NDIS should be about disabled people living lives at an acceptable standard. Removing these supports will plummet disabled people into a sate where they can’t access things, they can’t go out, they are even more isolated, and their mental health, and their families deteriorate … it will not save costs in the long run - just create a looming crisis, and create unconscionable inequity between those with disabilities and those without - where as long as you are not disabled, you will be ok.