Mother says NDIS failures contributed to daughter's death amid funding cuts

A Geelong mother says her terminally ill daughter would still be alive if the National Disability Insurance Scheme had provided adequate funding, detailing a four-year struggle with a system she says limited her daughter’s care. Koa Gibson, diagnosed with Lissencephaly, died in July after catching influenza and choking on her own vomit while alone on a hospital ward.

Aleisha Gibson says the family fought repeatedly for more support, but with limited success. 'From the moment we started asking for help, there was pushback, it didn't matter how much evidence we provided of her disabilities, how many supporting letters, or what we told them Koa needed to live,' she told the Daily Mail. Koa required 24/7 oxygen, a BIPAP ventilator, eight-hour seizures each day and as many as 60 medications a day. The family says the plan allocated 150 nursing hours per year — about three hours a week — far below what she needed.

NDIS policy changes on May 19 altered how funding is provided: plans are reassessed in three-month blocks rather than offering 12 months of funding at once. Gibson says the change curtailed flexibility at a time when Koa’s needs escalated. 'We must have had about 15 to 20 letters from professionals providing supporting evidence that Koa was not receiving adequate help and she needed more,' she said. 'The button pushers at the NDIS ignored the evidence and we were overruled.'

As Koa approached age two and three, her condition worsened and new medical needs emerged, including precocious puberty, rapid growth and related complications. Gibson said her daughter’s body doubled in size within months, increasing the level of care required, while doctors identified additional problems such as cerebral palsy, scoliosis and respiratory issues. 'She went from needing one person to carry her to three to four, and a standard wheelchair became a basic necessity,' she said. 'Her plan did not reflect a child who was six or seven in function but was treated as if she were two.'

Gibson said she repeatedly pressed for extensions of care during illness. 'We begged for an adequate extension of funding ahead of winter, which is the most dangerous season for at-risk patients,' she said. 'Despite other cases of leniency, the NDIS refused.' She says the demands took a toll on her own health: 'I was doing a doctor's, a nurse's, an ICU worker's job in my home by myself. My mental health was at rock bottom, I wanted to die.'

Earlier this year, Gibson fell ill with influenza, limiting her ability to care for Koa. She said nurses volunteered their time but there was little margin to recover. 'The NDIS didn't leave me any space to get sick, they don't account for life,' she said. Koa was rushed to hospital on July 7, and on July 10 she vomited medication into her respiration mask, a known risk for her condition that requires immediate suctioning. Alone on the ward, she began to drown in her own vomit. She was pronounced dead the following day.

An NDIS spokesman offered condolences and said the agency's role is to provide disability-related supports that complement, not replace, health and palliative care provided by states and territories. 'This is to ensure the best services are provided to meet the disability and health needs related to each person's individual circumstances and that participants access the right mix of disability and health care supports,' the spokesman said. 'The NDIS has and always will assess all relevant information received from participants and allied health teams when making decisions in line with the NDIS Act.'

Gibson called for accountability and greater engagement with the disability community. 'Koa’s gone, but I want accountability from the NDIS, whether it’s lifting funding blocks for other Australians like me. They need to get in touch with the actual disability community,' she said. 'The disabled community is only ever asking for enough to stay alive.'

The family’s account has drawn renewed attention to how funding rules and policy changes can affect access to care for children with complex medical needs, and to the ongoing debate about how disability supports should integrate with broader health services. The Daily Mail published details of Gibson’s account and the family’s experiences with the NDIS after Koa's death.