National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3637
My name is and I am the mother of a son with Autism and ADHD. We have been on the NDIS for two years. I am so thankful that we had the resources, education and understanding to access diagnosis and subsequent support. I dread to think where we would be without it. I dread to think about where other families like ours will be in the future if this bill passes in its current state.
I am writing to the senate inquiry with concerns about eligibility of the scheme being based on “all appropriate treatment” being explored and functional capacity assessments. I believe that these measures will serve to create a class-based gap for the NDIS, effectively blocking it from low-income and disabled families.
We have recently completed an FCA as part of an application for plan review. It took about 6 hours of interviews, surveys and collating paperwork to complete. The total cost, when all professionals were paid for their time and the assessments, amounted to about $4000. And that’s from people who already knew my son and had spent months, or years, working with him. I imagine that if you were completing an FCA on someone you just met, that the process would be longer and more distressing for the family involved. Parents with neurodivergence or disabilities would also find this process more difficult and therefore more time-consuming; possibly increasing costs further. And many families simply don’t have this kind of money, especially for an assessment that may not help them in any other space. One Plans in education are currently very-diagnosis based. Meaning that a family may pay $2000-4000 for a diagnosis to receive support in school, and an additional $3000-$4000 for a Functional Capacity Assessment to apply to the NDIS- all to support their disabled child. And this is not even taking into account the “appropriate treatment” that you’re supposed to access BEFORE applying.
We have spent thousands on supports that are not covered by the NDIS that other parents simply don’t have to. Fidgets, compression clothing, specialised sunscreen, incontinence underwear, bedwetting alarms. The list goes on. My son is lucky in that he has two parents with good incomes. We were able to start therapies while waiting for NDIS approval. I estimate that, even with NDIS, we have spent amount $8000-10,000 on supports for my son over the last 4 years. And this is not the price of being a parent, I have another child that simply hasn’t needed these supports. There are SO MANY families that simply cannot afford to do that. That are having to cut work hours to support their children. That are relying on carer payments. How can they afford $8000 to enter the scheme? How are they to support their children? Removing diagnosis as a way to enter the scheme doesn’t make it more accessible, it makes it more expensive and more laborious to families that are already under strain. I propose that if the government wants to use FCAs, that they do so after being accepted as a way of determining budgets and appropriate supports. This way, supports would be backed by the NDIS’s own assessments and low-income families could access the support they need.
The nebulous phrasing of “all appropriate treatment” is also a concern. Desperate people will try deresperate things. I know of Australians travelling to other countries to try stem-cell therapies to cure“ their autistic children, despite there being little evidence that this is possible or even advised. I am concerned that this provision may lead to more charlatans offering snake-oil to vulnerable families. Who determines what “all” is? Will this be updated with peer-reviewed evidence? Who decides what’s appropriate? I know that you amended the bill to remove forcible medications but what else is included? There are peer-reviewed studies that show the positive effects of equine therapy on autistic children- do we have to try that? About 80% of autistic people have gross motor issues- do we have to do physiotherapy to access the scheme? What we need instead is more effective monitoring at the other end of people’s plans. Early intervention can mean less supports are necessary later on. Plans can taper down if someone’s support needs lessen over time. More active monitoring of this would be a more appropriate way of curbing frivolous spending.
The part of the bill that refers to “consideration of a participant’s eligibility for other service systems when determining access to the NDIS” also raises concerns for me. In addition to being a mum, I am
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3637
also a teacher. And Thriving Kids scares the crap out of me. Teachers in schools are already drowning. Roughly 25% of students are currently on a One Plan and very few of them qualify for individual support (which is the level of funding required for an SSO). This means that teachers are expected to adjust to support these students. This expectation often comes without meaningful support. We are handed a list of 6-8 students with various disabilities per class, with differing needs, and told to do our best. Many are not. Adding additional programs, even with allied health professionals attached, into schools is not the answer. In my opinion it’s likely to make an already strenuous situation, worse. It will negatively impact teacher retention (which is already not great) and wellbeing, negatively impacting the education of all students. What should be encouraged instead is incentives for group therapies for both providers and those who access them. This makes them more affordable for the NDIS, increases profit margins for providers and still has the goal of providing support in a less-individualised way.
I think these amendments are extremely dangerous and short-sighted. From an economic view, the NDIS is expensive, I won’t deny it. But it’s not only a cost. If we didn’t have NDIS, I know that there is no way that I would be working full-time. I possibly wouldn’t be in the workforce at all, despite being a highly-qualified Lead Teacher who is exceptional at her job. The physical, mental and emotional demands of caring for my son would be too high. Supports mean that I am able to work, to pay taxes, to not-claim Centrelink payments. This is also true of many on the scheme- they are able to work with their supports and contribute to the overall economy.
And there is another cost. One that we only have to look back 6 months to remember. I cannot describe to you the deep and profound sorrow that I felt when I heard of the double murder-suicide in Perth in January of this year. I never knew Jarrod Clune, Maiwenna Goasdoue or their sons Otis and Leon. My son does not have profound autism and I cannot imagine how hard their days and nights were. But I felt their passing like a punch to the chest. Because they were part of our community. They were doing their best under difficult circumstances. It is clear that they loved their children very much and it is such a tragedy that they felt their best option, after their funding was cut, was for an entire family to die. Their loss was one felt keenly by the autism community and it is a fate that I worry others will find if this bill passes as it stands. We should not be so quick to forget such an avoidable tragedy.
The Labor party did a great thing in making the NDIS. It has transformed Australia for the better in so many ways. I have always believed that the Labor party stands for human rights and working class people. Stand for those things now. Protect our vulnerable citizens and a future where disabled people and their families can live in the light.