After a one year “ugly battle” with the National Disability Insurance Scheme (NDIS), Pakenham parents Nurindah Lestari and Tony Sullivan have finally secured additional funding for their eight-year-old son following an Administrative Appeals Tribunal (AAT) review.
Blade was diagnosed with Level 2 Autism Spectrum Disorder and ADHD, along with severe anxiety, a bowel problem, eating disorder, delayed language and emotional skills, and self-harming behaviors.
In September last year, his family noticed a significant reduction in their NDIS plan, with key therapies cut in half and leaving his family struggling to provide adequate care.
They first requested an Internal Review of their son’s NDIS plan when the initial funding decisions didn’t meet his needs.
When that failed to resolve the issues, they escalated the matter to the Administrative Appeals Tribunal for an external review, enduring months of paperwork, reports, and hearings.
“There were many tears in our journey and we kept pushing through,” Lestari said.
“To be honest it was an ugly battle and we almost wanted to give up in the middle. Facing a government agency was not easy and they made it hard with the hope that we would give up.”
On August 8, 2025, the Tribunal approved additional funding, which will provide more hours and greater support for occupational therapy, speech pathology, continence nursing, and support workers. The agreement also sets a 12-month review date for the child’s plan.
“This additional funding will allow our son to receive the proper support he needs, support that is not only essential, but timely,” Lestari said with joy.
“We firmly believe that early intervention is critical. He now has a far greater chance of achieving his potential and enjoying a better quality of life and it’s also about giving him the foundation to thrive.”
The family describes the tribunal victory as a “huge relief”.
“This victory means we can now focus on improving our son’s development and supporting him to build a brighter future.
“It’s not just a win in paperwork, it’s a validation of his journey, our advocacy, and the belief that every child should have access to the right support to thrive.”
As a mother and disability support worker, Lestari warns that the system still hinders families from getting the support their children urgently need.
“Without solid, well-prepared reports and strong backing from your child’s therapy team, it’s nearly impossible to win. It’s about being prepared, supported, and resilient every step of the way.”
Still, she urges parents navigating the NDIS journey, not to give up the fight.
“Be your child’s advocate. Be firm, be bold, and don’t be afraid to challenge decisions when you know your child deserves better,” Lestari said.
“Our children rely on us to be their voice and it’s our responsibility to fight for their rights, their support, and their future.
“Observe your child closely. Listen deeply and take action when it’s needed. They are watching us. They see how we stand up for them, how we persevere, and how we never give up.
“Through our example, they learn resilience, strength, and self-worth. Stay strong. Keep going. You are not alone.”
