Sign up for the Breaking News Australia email<\/a><\/p>\nWhile 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\u2019s Counsel to represent them.<\/p>\n
Every time the couple have appealed to the ART, the NDIA was forced, or agreed during pre-hearing negotiations, to significantly increase Sienna\u2019s supports.<\/p>\n
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 \u2013 and that the NDIS is perceived to provide a \u201cslush fund\u201d that people with disabilities can spend however they wish.<\/p>\n
\u201cIt 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,\u201d says June.<\/p>\n
\u2018Dialling in from the hospital\u2019<\/p>\n
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.<\/p>\n
In April 2024, Sienna received a support plan in which the NDIA proposed cutting her plan by more than $500,000 a year.<\/p>\n
These savings were going to be made, in large part, by swapping out the registered nurses that provided overnight care for Sienna \u2013 suctioning her airways and monitoring her ventilator \u2013 with high-intensity support workers, who are not medically trained; a move Sienna\u2019s parents said risked her life.<\/p>\n
The full ART appeal went on for nearly a year, including multiple days of hearings.<\/p>\n
June and Steve, who had no legal representation throughout, did the work required for the legal process around their work and care of Sienna.<\/p>\n
\u201cWe 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,\u201d says June.<\/p>\n
In April 2025, the ART ruled that significant portions of Sienna\u2019s funding should be reinstated, including overnight nursing care.<\/p>\n
The tribunal member wrote in a publicly available published decision that while the NDIA\u2019s original plan for Sienna\u2019s care came at \u201ca substantially lower cost\u201d to the taxpayer, it presented \u201cvery high\u201d risks to Sienna\u2019s safety.<\/p>\n
\u201cThere is no indication that the Agency [NDIA] has given consideration to the best interests of the child in this matter,\u201d he wrote.<\/p>\n
When the decision was handed down in their favour, June was overcome with relief.<\/p>\n
\u201cI was on my knees literally crying,\u201d says June.<\/p>\n
\u2018It was gut-wrenching\u2019<\/p>\n
But despite the emphatic ruling, this was not the end of their fight.<\/p>\n
A few weeks after the tribunal ruled in June and Steve\u2019s favour, the NDIA appealed against the tribunal\u2019s decision to the Guidance and Appeals Panel (GAP), an appeal body that was instituted in 2024 to review decisions of the ART.<\/p>\n
\u201cI felt sick \u2026 It was just horrible. It was heartbreaking. It was gut-wrenching. It was frustrating. It was all of those things at the same time,\u201d said June.<\/p>\n
To date, Sienna\u2019s 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.<\/p>\n
The hearing took place over five days in March, and the NDIA engaged multiple lawyers and briefed a King\u2019s Counsel.<\/p>\n
\u201cI think we laughed at first; we thought it was a joke, because we know how much a KC can cost,\u201d says June. \u201cBut I really just don\u2019t know what they\u2019re trying to prove. I just don\u2019t know why they need a KC.\u201d<\/p>\n
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.<\/p>\n
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\u2019s most recent appeal to the ART and preparation for the GAP appeal.<\/p>\n
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\u2019s Counsel and the other lawyers involved in the five-day GAP hearing.<\/p>\n
A decision in the GAP matter is pending.<\/p>\n
A spokesperson for the NDIA said: \u201cThe NDIA engages lawyers in the Administrative Review Tribunal (ART) matters to ensure it meets its Model Litigation Obligations.<\/p>\n
\u201cLegal 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.\u201d<\/p>\n
The spokesperson added that as the matter was before the GAP it was not appropriate to provide further comment.<\/p>\n
Through the entire relentless process, June fears that Sienna\u2019s personhood risks being lost in the eyes of the decision-makers.<\/p>\n
\u201cWe \u2026 try and make it a more humanised process so that they can see that there is a little girl involved.<\/p>\n
\u201cShe is a lovely girl who very much wants to interact with people and be part of the world in her own way,\u201d says June. \u201cShe has a love for art, she has a love for her dog, she has a love for the outdoors, she just \u2013 she loves a challenge.<\/p>\n
\u201cWe just try and make her life as happy and fulfilling as possible.\u201d<\/p>\n
*Not their real names<\/p>\n","protected":false},"excerpt":{"rendered":"June\u2019s six-year-old daughter Sienna* is one of the more profoundly disabled people on the national disability insurance scheme.…\n","protected":false},"author":2,"featured_media":705504,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[43,44,41,39,42,40],"class_list":["post-705503","post","type-post","status-publish","format-standard","has-post-thumbnail","category-headlines","tag-headlines","tag-news","tag-top-news","tag-top-stories","tag-topnews","tag-topstories"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/705503","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=705503"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/705503\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/705504"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=705503"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=705503"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=705503"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}