Parents Battle NDIS for Essential Care Funding for Severely Disabled Daughter
Six-year-old Sienna’s parents have fought the NDIS every year of her life for funding that keeps her alive
Image: The Guardian
June and Steve, parents of six-year-old Sienna with severe disabilities, have fought the National Disability Insurance Scheme (NDIS) for adequate funding since her birth. Despite the NDIS's proposed cuts, they successfully appealed for necessary support, highlighting systemic issues in the funding process for disabled children in Australia.
- 01Sienna has cerebral palsy and requires constant medical care, including 24/7 oxygen support and regular suctioning of her airways.
- 02The NDIS proposed to cut Sienna's funding by over $500,000 annually, replacing trained nurses with untrained support workers, which her parents deemed life-threatening.
- 03June and Steve have appealed five times in five years against NDIS decisions, often representing themselves while managing Sienna's complex care needs.
- 04The NDIA has spent over $330,000 in legal fees to oppose the family's appeals, highlighting the financial burden of legal battles on families seeking necessary support.
- 05In April 2025, the Administrative Review Tribunal ruled in favor of Sienna's funding, emphasizing the NDIA's failure to prioritize her best interests.
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Sienna, a six-year-old girl with severe disabilities, has been reliant on the National Disability Insurance Scheme (NDIS) for essential medical support since her birth. Her mother, June, describes the arduous journey of fighting for adequate funding, as Sienna requires constant care due to her cerebral palsy and multiple health complications. Recently, the NDIS proposed significant cuts to her funding, which would jeopardize her safety by replacing trained nursing staff with untrained workers. Over the past five years, June and her husband, Steve, have appealed five times against the NDIS's decisions, often managing the legal process themselves alongside Sienna's care. Their appeals have forced the NDIS to increase funding, with the agency reportedly spending over $330,000 in legal fees to contest their claims. In a recent ruling, the Administrative Review Tribunal sided with the family, reinstating crucial support, but the NDIS has since appealed this decision. June expresses frustration at the system, emphasizing that the support is not a luxury but a necessity for Sienna's survival and quality of life.
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The ongoing legal battles and funding cuts directly affect Sienna's health and well-being, as well as the financial and emotional strain on her family.
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