June’s six-year-old daughter Sienna* is one of the more profoundly disabled people on the national disability insurance scheme.
Sienna has cerebral palsy and a number of comorbidities. She cannot talk, she cannot sit unassisted, she is fed through a tube, she is incontinent. She has two types of lung disease and is on oxygen 24/7.
Her lungs need to be suctioned – with a tube inserted down her nose and throat – every five to 10 minutes, including overnight.
This means that before the NDIS provided funding for overnight nursing care, Sienna’s parents would sleep in four-hour shifts, taking it in turns to sit by her bed, suctioning her airways and monitoring her ventilator to make sure pressure in her lungs did not become too high, or too low, either of which could be fatal.
“She had open-heart surgery in 2024,” says June*. “She’s had, I think, about eight operations under general anaesthetic.” The common cold will put her in intensive care where she stays for anywhere between one week to two months.
Sienna is in hospital so often that she has a designated nurse who is familiar with Sienna and her medical history for her stays.
In April, the health minister, Mark Butler, announced huge cuts to the NDIS that would see about 160,000 people removed from the scheme in order to preserve the scheme for those who needed it most.
When June heard his announcement, she was furious.
Not because she feared Sienna would be kicked off the scheme, but because of what she sees as “a big lie” that the NDIS is adequately supporting those who need it most, and that getting money to support people like Sienna is easy for families.
June says the support Sienna has received since she was born is money that she and her husband, Steve* (none of the family can be named for legal reasons) had to fight for.
The couple said the National Disability Insurance Agency (NDIA) opposed them every step of the way.
Five times in five years, June and Steve have appealed against Sienna’s NDIS plans all the way to the administrative review tribunal (ART), juggling the legal work involved around their jobs, Sienna’s care, her hospital visits and her therapy.
This means that apart from the very first NDIS plan they received for Sienna – when she was just a few months old and they barely had a grasp of what her disability was and would mean – they have had to appeal against every single NDIS plan that Sienna has been issued in her short life.
Sign up for the Breaking News Australia emailWhile they have been self-represented for almost all of the legal matters, information released under FoI shows the NDIA has spent more than $330,000 on legal fees and expenses to fight the family on the most recent matter alone, briefing barristers and a King’s Counsel to represent them.
Every time the couple have appealed to the ART, the NDIA was forced, or agreed during pre-hearing negotiations, to significantly increase Sienna’s supports.
June is furious that getting the support Sienna needs, not even to live a good life, but simply to stay alive, has been so hard – and that the NDIS is perceived to provide a “slush fund” that people with disabilities can spend however they wish.
“It is not. I can tell you exactly what every cent [in her plan] is for. And everything is for medical purposes to keep her alive and breathing every day and to give her a chance to be in the population and an active part of society,” says June.
‘Dialling in from the hospital’
Of the five appeals in five years that June and Steve have brought against the NDIA, they say their most recent was the most harrowing.
In April 2024, Sienna received a support plan in which the NDIA proposed cutting her plan by more than $500,000 a year.
These savings were going to be made, in large part, by swapping out the registered nurses that provided overnight care for Sienna – suctioning her airways and monitoring her ventilator – with high-intensity support workers, who are not medically trained; a move Sienna’s parents said risked her life.
The full ART appeal went on for nearly a year, including multiple days of hearings.
June and Steve, who had no legal representation throughout, did the work required for the legal process around their work and care of Sienna.
“We were even going through [case management] conferences at the ART while our daughter was being prepped for heart surgery. We were literally dialling in from the hospital,” says June.
In April 2025, the ART ruled that significant portions of Sienna’s funding should be reinstated, including overnight nursing care.
The tribunal member wrote in a publicly available published decision that while the NDIA’s original plan for Sienna’s care came at “a substantially lower cost” to the taxpayer, it presented “very high” risks to Sienna’s safety.
“There is no indication that the Agency [NDIA] has given consideration to the best interests of the child in this matter,” he wrote.
When the decision was handed down in their favour, June was overcome with relief.
“I was on my knees literally crying,” says June.
‘It was gut-wrenching’
But despite the emphatic ruling, this was not the end of their fight.
A few weeks after the tribunal ruled in June and Steve’s favour, the NDIA appealed against the tribunal’s decision to the Guidance and Appeals Panel (GAP), an appeal body that was instituted in 2024 to review decisions of the ART.
“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,” said June.
To date, Sienna’s case is one of around a dozen cases involving the NDIS that have been accepted by the GAP to be reviewed out of thousands of ART appeals that are lodged against decisions made by the NDIA each year.
The hearing took place over five days in March, and the NDIA engaged multiple lawyers and briefed a King’s Counsel.
“I think we laughed at first; we thought it was a joke, because we know how much a KC can cost,” says June. “But I really just don’t know what they’re trying to prove. I just don’t know why they need a KC.”
June submitted a freedom of information request to the NDIA to find out how much the agency had spent on external legal fees in their most recent case and in the preparation of the GAP appeal.
The NDIA released the figures to her earlier this month showing that the government had been billed more than $339,000 for external legal fees and expenses in relation to Sienna’s most recent appeal to the ART and preparation for the GAP appeal.
The full legal cost to the government is likely to be significantly higher as this figure only includes bills submitted by November 2025, so does not cover the legal fees of the King’s Counsel and the other lawyers involved in the five-day GAP hearing.
A decision in the GAP matter is pending.
A spokesperson for the NDIA said: “The NDIA engages lawyers in the Administrative Review Tribunal (ART) matters to ensure it meets its Model Litigation Obligations.
“Legal expenses reflect the NDIA meeting its responsibilities in ART proceedings, including responding to applications, assisting the Tribunal to reach timely and well-informed decisions, and working with applicants and their representatives to resolve matters as early as possible.”
The spokesperson added that as the matter was before the GAP it was not appropriate to provide further comment.
Through the entire relentless process, June fears that Sienna’s personhood risks being lost in the eyes of the decision-makers.
“We … try and make it a more humanised process so that they can see that there is a little girl involved.
“She is a lovely girl who very much wants to interact with people and be part of the world in her own way,” says June. “She has a love for art, she has a love for her dog, she has a love for the outdoors, she just – she loves a challenge.
“We just try and make her life as happy and fulfilling as possible.”
*Not their real names
