The National Disability Insurance Scheme (NDIS) has plunged a Geelong family into crisis after abruptly withdrawing funding for the round-the-clock care of their profoundly disabled six-year-old son, Koa Gibson.
Koa suffers from a rare and severe neurological condition called lissencephaly, which means 'smooth brain'. This results in daily life-threatening epileptic seizures, an inability to speak, walk, or eat independently, and requires constant, specialised medical supervision.
His mother, Tamara, has been his primary carer, a role she describes as a relentless, 24/7 vigil. "We don't sleep. We just survive," she told reporters, the strain evident in her voice. The recent NDIS decision has shattered the fragile stability they had built.
A Cruel Blow: The Funding Cut
The family's approved NDIS plan, which included funding for crucial overnight nursing care, was suddenly slashed. This care was not a luxury but a medical necessity, monitoring Koa's complex seizures and ensuring his airway remained clear—a literal matter of life and death.
Without this professional support, the immense physical and emotional burden falls entirely on Tamara and her family. "The system is failing us," she stated. "We are being pushed to the absolute brink."
A Mother's Desperate Plea
Tamara's fight is not just for funding; it's for recognition. She argues that the NDIS review process fails to grasp the intense, unforgiving reality of caring for a child with such high-needs disabilities.
"They see a document, they don't see the child," she lamented. Her days are consumed with administering medication, managing medical equipment, and providing every aspect of Koa's personal care, all while living with the constant fear of a fatal seizure.
The Wider Crisis in the Disability Sector
This case highlights growing concerns about the sustainability and administrative consistency of the NDIS. Advocates report a rising tide of similar stories, where essential supports are being reduced or denied without clear explanation, leaving vulnerable families in limbo.
The Gibson family's story is a powerful testament to the gaps in Australia's flagship disability support system. Their battle underscores the critical difference between simply existing and having a quality of life, and the vital role that appropriate funding plays in sustaining families caring for the most vulnerable in our society.
