Submission 4
I was a first-time mum, and my now diagnosed Level 2 autistic daughter was my first real experience raising or even being around children. She was my “normal”.
I suffered from postnatal depression and anxiety after she was born. She was a colic baby, but unlike what many people told me, things did not simply improve with time. Deep down, I knew something was not right.
By around 18 months old, I started noticing developmental differences. What stood out most was her emotional regulation. She would cry constantly over what seemed like “nothing”, but I now understand those moments were not nothing at all. They were sensory overwhelm, frustration, and an inability to communicate her needs.
I completed a screening quiz on the Autism Speaks website, which indicated a high likelihood of autism and recommended following up with a GP. I understand this was not diagnostic criteria, simply a screening tool, but it validated concerns I was already carrying as a mother.
I went into my GP appointment prepared. I brought an entire A4 page listing my concerns, including the fact my daughter had regressed in speech and other skills. Instead of support, I was made to feel like I was overreacting. I was told, “You can’t expect her to do it because you say so,” and, “I can write a referral, but nobody will do anything until she’s at least two.”
I left that appointment feeling dismissed, unsupported, and questioning myself as a mother.
About a month later, I sought a second opinion. That doctor immediately saw what I could see and referred us to a private paediatrician. Thankfully, I was in a position where I could afford private care, because many families cannot.
My daughter was eventually diagnosed with Level 2 Autism Spectrum Disorder.
Accessing NDIS-funded early intervention changed both my daughter’s life and mine. When professionals say early intervention is critical, they are right. My daughter is living proof of that.
We went from constant meltdowns, regressions, and distress to genuine progress. Over time, the meltdowns reduced. Working alongside occupational therapists helped me understand my daughter better and gave me practical tools to support her at home.
We attended weekly speech and occupational therapy sessions. We also completed an intensive early language program called Hanen More Than Words, which gave me invaluable knowledge and helped kickstart my daughter’s speech development. These are services I never could have afforded privately.
Submission 4
One of the hardest parts of the proposed NDIS changes is feeling like the goalposts are now being moved for families like mine.
My daughter met the eligibility requirements for the NDIS when she was diagnosed in 2021. We were told early intervention was critical. We were encouraged to access supports early because it would improve long-term outcomes, and it did.
Now, years later, families are being told children with the exact same diagnosis and support needs may no longer qualify under proposed changes.
It is incredibly difficult to understand how a child can qualify for support when they are struggling, make progress because of those supports, and then have the system suggest they no longer meet the threshold. That progress did not happen by accident. It happened because early intervention worked.
To many families, this feels like the goalposts are being moved after we followed the advice given to us by professionals and the government itself.
Families should not have to live in fear that the very supports responsible for their child’s progress could be taken away simply because those supports were successful.
My daughter eventually attended an early intervention daycare and made significant progress there. However, over time it became painfully obvious that many disability providers viewed children like mine as opportunities for profit rather than vulnerable children needing support.
For example, I was charged against my daughter’s NDIS funding simply for sitting in on one of her therapy sessions. I was also quoted $2,000 of NDIS funding for a two-week toilet training program at daycare, with the understanding that if she was not toilet trained by the end, another $2,000 would be required.
I later moved her to another centre, only to experience similar practices. One example was being charged for “music therapy”, which in reality was simply circle time — something that occurs in every mainstream daycare setting. The difference was that because these children had disabilities and NDIS funding attached to them, providers saw an opportunity to claim more funding.
I absolutely believe there are issues within the NDIS that need addressing. I have witnessed misuse and exploitation firsthand. But the answer cannot be reducing access to children and families who genuinely need support.
My daughter made progress that simply would not have been possible without these services. Like many Australian families, we never could have afforded this level of support out of pocket. A child’s future should not be determined by their family’s income.
Submission 4
Children are the future of this country. If we want better long-term outcomes, we should be investing in children early, when intervention has the greatest impact.
My daughter now attends a mainstream school. After experiencing disability-specific early intervention settings, I can confidently say mainstream schools are not equipped to provide the same level of support for many autistic children.
This is why it deeply concerns me to hear discussions about pushing children with disabilities back into mainstream systems without adequate supports in place.
Teachers are doing their best, but most do not receive specialised autism training, and there are not enough permanent teacher aides or support staff in classrooms. In my experience, there are often multiple children in one class with additional needs competing for limited support.
My daughter does not present with major behavioural challenges, and because of that, she is often unintentionally overlooked while teachers are forced to focus on managing more immediate behaviours in the classroom.
These children still matter. Quiet struggles are still struggles.
The reality is that without adequate early intervention and ongoing support, many autistic children risk falling behind academically, socially, and emotionally — not because they lack potential, but because the systems around them are not designed to meet their needs.
I ask the government to remember that behind every budget decision, policy change, and funding cut is a real child, a real family, and a future that can either be supported or neglected.
The NDIS is not perfect, and reform is needed. But reforms should focus on reducing exploitation and improving accountability, not limiting access to vulnerable children who rely on these supports to have the same opportunities as everyone else.