Submission 2555
To whom it may concern,
My name is , and I'd like you to meet my 9-year-old daughter, .For this to make sense, you first need a brief history of .
was born in May 2017. There are two things that babies are expected to do – eat and sleep – and she would hardly ever do either. At just six weeks old, she was diagnosed with failure to thrive and oral aversion. Caring for during those early years was incredibly stressful and overwhelming for our family. You would think a hungry baby would eventually give in to hunger, but not our .
Throughout her early years, she started showing more signs of being Autistic. In 2021, we were first referred to an Occupational Therapist. It took us five months to get an appointment. Then, in early 2022, was diagnosed as Autistic with a Pathological Demand Avoidance (PDA) profile.
Things started to click. We began to understand who was and how she was struggling. It is fair to say that by this stage, we were drowning. ’s needs impacted every aspect of daily life—schooling, church, friendships, and family relationships. She was like a little bomb that could detonate at any moment, and we were constantly trying to predict what might trigger the next explosion.
In mid-2022, we started regular Occupational Therapy support. This was life changing. For the first time, we had someone helping us build capacity. Someone who could work with , support us as parents, and attend meetings with schools. Someone who helped with extremely dangerous behaviours such as undoing seat belts whilst driving down highways and running into traffic in car parks.
We were able to better understand and advocate for her needs. Importantly, was also able to understand herself more. Through NDIS funding, I was able to complete a parent-only course for parents of children with PDA. Being able to connect with other parents walking a similar path was a real gift and helped reduce the sense of isolation that so many families experience.
The NDIS did not remove ’s disability, but it has helped us manage it and build capacity. It has helped her grow and understand who she is and how she can contribute positively in a world that has very little understanding of her and her challenges. David and I believe wholeheartedly that if it were not for early access to Occupational Therapy and Exercise Physiology support, would not be where she is today.
While is in a much better place than she was in 2022, it would be remiss of me not to share that there are still daily struggles that impact our whole family. There is a constant worry underneath everything. Will cope with this situation? Will she be able to attend this activity? What will happen if she becomes overwhelmed? What does her future look like?
Submission 2555
Even on the good days, there is a level of vigilance that many families do not see. We are constantly assessing situations, anticipating challenges, and adapting plans to help succeed. The skills and strategies we have learned through NDIS-funded support make that possible. Without them, many of the gains has made would be much harder to maintain.
Even now, we continue to need support. We have recently introduced a dietitian to help with ’s highly restrictive eating—something we have been trying to manage on our own for years.
My concern with the proposed changes is that they may make it harder for families like ours to access the supports we need when we need them. Far from accessing unnecessary supports, we are regularly forced to choose between absolutely necessary supports and reject the least urgent, as needed as they may be. Early intervention and capacity-building supports have made an enormous difference to ’s life. I worry that if access becomes more restricted, funding is reduced, or families are required to navigate additional barriers, children like may miss out on support during critical periods of development.
Without the supports the NDIS provides, would struggle more at school. We would lose strategies that help us navigate anxiety and demand avoidance at home. The burden would not disappear. It would simply be shifted onto our already overloaded family, onto her teachers, and onto other systems that are not equipped to provide the specialised support needs.
is a bright, funny and capable little girl. The NDIS has helped our family support her participation in school, church and the wider community, while helping her build skills for the future.
I urge decision-makers to consider the real-world impact that reduced supports, increased barriers, or delayed access would have on families like ours. We love our little girl more than anything. All we want for her is to live her life to the best of her ability. To have a full life. To know she has great potential.
The NDIS funding is not just helping today—it is helping build the foundations for her future. Every skill she learns, every strategy she develops, and every barrier she overcomes increases her ability to participate in education, employment, relationships and community life in the years ahead.
I believe has so much to offer the world. She is thoughtful, creative, intelligent and determined. The support she receives through the NDIS is helping her develop the tools she needs to thrive and contribute to society in her own unique way.
Now is the time to invest in children like . The benefits will be felt not only by our family, but by the wider community for years to come.
Submission 2555
Yours sincerely,