Four-year-old dies after years with limited NDIS support, mother says system failed

A four-year-old girl with a rare, incurable neurological condition died in hospital after contracting influenza, days after leaving her mother's care amid disputes over funding and support from the National Disability Insurance Scheme.

Koa Gibson, known as Koko to her family, was diagnosed with Lissencephaly when she was five weeks old. Her mother, Aleisha Gibson, said Koa required constant support for severe disabilities that included cerebral palsy, epilepsy and respiratory issues. Gibson said Koa was on oxygen around the clock and depended on a BIPAP ventilator, with seizures lasting hours and a daily medication load she estimated at about 60 doses.

Gibson said the family's care was constrained by an NDIS plan that did not reflect Koa's growing needs. She said the 150-hour annual nursing allocation equated to less than three hours of in-home care per week, a level she described as inadequate for a child who by age two had already shown rapid health deterioration associated with precocious puberty and worsening respiratory and neurological complications. The NDIS had changed how funding was provided on May 19, shifting to three-month blocks for plan reassessments, rather than providing a year's worth of funding at once.

Gibson said there had been substantial evidence from pediatricians and other professionals indicating Koa’s needs, but the response from NDIS staff was often insufficient and the plan did not adapt to her reality. By age two, Koa’s body grew rapidly during precocious puberty, increasing care needs beyond the 12-month plan.

In July, Koa was hospitalized after catching influenza. On July 10, she vomited medication into her respiration mask while alone on a ward—an event Gibson described as a known risk given Koa’s reliance on suction and respiratory support. A nurse typically covers about four cases on a ward, Gibson noted, and she said there was little space for error when she could not be there to assist. Koa was pronounced dead the following day.

The NDIS issued condolences to the Gibson family and reiterated that the scheme is intended to complement health systems rather than replace them, adding that it reviews information from participants and allied health professionals in line with the NDIS Act. Advocates for the family have pressed for accountability and for policymakers to engage with the disability community to ensure funding reflects medical realities rather than administrative constraints.

The case has renewed advocacy for changes in how the NDIS assesses need and allocates supports, including closer alignment with families’ lived experience and greater flexibility during periods of illness. Gibson said she hopes her daughter’s case prompts a broader reckoning about disability supports in Australia, particularly for children with complex conditions who rely on both disability and health-care services to stay alive.