For families navigating the National Disability Insurance Scheme (NDIS) in Australia, the journey can be an arduous and emotionally draining battle. The case of Sienna*, a six-year-old girl with profound disabilities, highlights the immense challenges faced by those who rely on the scheme for life-sustaining care. Sienna’s complex medical needs, including cerebral palsy, severe respiratory issues requiring constant oxygen and suctioning, and a history of multiple surgeries, place her among the most vulnerable participants in the NDIS.
Her daily existence is a testament to the dedication of her parents, June and Steve, who have been locked in a protracted fight with the National Disability Insurance Agency (NDIA) to secure the necessary funding for Sienna’s survival and well-being. Sienna cannot speak, sit unassisted, or manage her own bodily functions, necessitating round-the-clock care. This includes frequent airway suctioning, a critical procedure that, without adequate nursing support, previously required her parents to sleep in shifts, constantly monitoring her ventilator.
A Constant Struggle for Essential Care
June recounts the harrowing experience of Sienna’s frequent hospitalisations, which can last from one week to two months, often triggered by common illnesses that would be minor for other children. Sienna’s medical history is extensive, marked by open-heart surgery in 2024 and approximately eight other operations under general anaesthetic. The sheer volume of her medical needs has led to her having a designated hospital nurse familiar with her specific case, underscoring the intensity of her care requirements.
The announcement in April by the Health Minister, Mark Butler, of significant cuts to the NDIS, intended to remove around 160,000 participants and “preserve the scheme for those who needed it most,” ignited fury in June. Her anger stemmed not from a fear of Sienna being removed, but from a deep-seated frustration with the perception that the NDIS adequately supports those with the most complex needs, and that accessing such funding is a straightforward process.
Years of Appeals and Legal Battles
June and Steve’s experience paints a starkly different picture. Since Sienna’s birth, they claim to have encountered relentless opposition from the NDIA regarding her support plans. Over five years, they have been forced to lodge appeals with the Administrative Review Tribunal (ART) no fewer than five times. This has involved juggling the immense legal work with their professional lives, Sienna’s demanding care schedule, and her frequent hospital visits and therapies.
Remarkably, apart from their very first NDIS plan when Sienna was an infant and they were still grappling with the implications of her disabilities, every subsequent plan has required an appeal. While the couple has largely represented themselves, information obtained through freedom of information requests has revealed that the NDIA has spent over $330,000 on legal fees and expenses to contest just their most recent matter, engaging barristers and a King’s Counsel. Each successful appeal to the ART has resulted in significant increases to Sienna’s mandated supports.
June’s frustration is palpable. The fight for funding that is not for a “good life,” but simply to keep her daughter alive and give her a chance to be an active member of society, has been an exhausting ordeal. She vehemently refutes the notion of the NDIS being a “slush fund,” asserting that every cent in Sienna’s plan is meticulously allocated for essential medical purposes.
The Heart-wrenching Appeal Process
The most recent appeal, initiated in April 2024, proved particularly harrowing. The NDIA proposed a drastic reduction of over $500,000 from Sienna’s annual support plan. This substantial cut was largely to be achieved by replacing registered nurses providing crucial overnight care – including airway suctioning and ventilator monitoring – with high-intensity support workers who lack the necessary medical training. Sienna’s parents viewed this as a direct threat to her life.
The ART appeal process spanned nearly a year, involving multiple hearing days. June and Steve, without legal representation, undertook the demanding legal preparations alongside their existing responsibilities. June shared the profound difficulty of participating in case management conferences at the ART while simultaneously preparing their daughter for heart surgery, stating, “We were literally dialling in from the hospital.”
In April 2025, the ART ruled in their favour, reinstating significant portions of Sienna’s funding, including the vital overnight nursing care. The tribunal member’s decision highlighted the NDIA’s plan, while financially attractive to the taxpayer, posed “very high” risks to Sienna’s safety and noted a lack of consideration for the child’s best interests. The ruling brought June immense relief, describing it as a moment of tearful, on-her-knees gratitude.
A Further Appeal and Lingering Uncertainty
However, the legal battle was far from over. Just weeks after the ART decision, the NDIA lodged an appeal against the tribunal’s ruling with the Guidance and Appeals Panel (GAP), a body established to review ART decisions. This news plunged June into a state of despair. “I felt sick… It was just horrible. It was heartbreaking. It was gut-wrenching. It was frustrating. It was all of those things at the same time,” she expressed.
Sienna’s case is one of a select dozen NDIS-related matters accepted by the GAP for review from thousands of ART appeals filed annually against NDIA decisions. The five-day GAP hearing in March saw the NDIA represented by multiple lawyers, including a King’s Counsel. June and Steve initially found the prospect of the NDIA engaging such high-cost legal representation almost farcical, questioning the necessity.
A freedom of information request submitted by June revealed that the NDIA had been billed over $339,000 for external legal fees and expenses related to Sienna’s most recent ART appeal and the preparation for the GAP appeal. This figure is likely an underestimation, as it only covers bills submitted up to November 2025 and does not include the full costs of the King’s Counsel and other legal professionals involved in the GAP hearing. A decision from the GAP is still pending.
A spokesperson for the NDIA stated that engaging lawyers in ART matters is to ensure compliance with “Model Litigation Obligations” and that legal expenses reflect the agency’s responsibilities in responding to applications and assisting the tribunal. Due to the ongoing GAP proceedings, no further comment was provided.
Preserving Dignity Amidst Bureaucracy
Throughout this relentless and emotionally taxing process, June fears that Sienna’s individuality and personhood are being overlooked by the decision-makers. The family strives to humanise the process, hoping to convey that behind the complex case files is a vibrant little girl who loves art, her dog, the outdoors, and embraces challenges. Their ultimate goal is to ensure Sienna’s life is as happy and fulfilling as possible, a fundamental right that has become a constant, uphill battle.
