Australia’s National Disability Insurance Agency (NDIA) announced plans in April to remove around 160,000 people who are disabled from the National Disability Insurance Scheme (NDIS) to supposedly save the scheme for people who need it more. June (a pseudonym) and her husband argue otherwise however.

June and her husband have a six-year old daughter with cerebral palsy, two types of lung diseases, along with multiple comorbidities that keeps her in bed, in need of her lungs being suctioned 24/7 and in the hospital for most of her life. Upon hearing the NDIS’s plan to remove people from the scheme to better prioritize people, June was outraged as she believes this reasoning is not true and has not been true due to past experiences.

June and her husband have had to fight to receive financial aid that could aid in paying for medical care such as overnight nursing care for June’s daughter to help suction out air from her lungs and monitor her lungs to ensure pressure within does not become too fatal. These fights for funding that could ensure at least the survival of their daughter’s life have started since their daughter was a few months old and have been carried out through appeals that the couple mostly represented themselves for while simultaneously attending their own jobs, caring for their daughter, and visiting hospitals or sitting through their daughter’s surgeries when conditions became dire. 

Appeals have been carried out throughout the last five years as the NDIA attempts to change plans for June’s daughter. Recently, the NDIA has attempted to cut June’s daughter support plan by more than $500,000 in April 2024. They had proposed to swap out overnight nursing care for June’s daughter with high-intensity support workers that were not medically trained which could risk the life of June’s daughter. June and her husband had to appeal , without legal representation, to the administrative review tribunal (ART) which went on for a year until April 2025, where ART ruled that the NDIA had to reinstate funding and overnight nursing care for June’s daughter. Despite this, the NDIA appealed ART’s decision to the Guidance and Appeals Panel (GAP). The appeal to GAP cost the NDIA more than $339,000, with the full legal cost to the government going higher. This draws into question whether the NDIA truly wishes to save money to better help people with disabilities or if the money is being used in other ways.

As of now, the GAP appeal is still being decided, but the NDIA’s actions draw concern as to whether they have the best interest of people with disabilities in mind. More details can be found in The Guardian article linked in the sources.

Sources

Lyons, Kate. “Six-Year-Old Sienna’s Parents Have Fought the Ndis Every Year of Her Life for Funding That Keeps Her Alive.” The Guardian, Guardian News and Media, 30 May 2026, www.theguardian.com/australia-news/2026/may/31/ndis-funding-celebral-palsy-parents-of-six-year-old-ntwnfb.