{"id":413140,"date":"2026-01-14T21:24:08","date_gmt":"2026-01-14T21:24:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/au\/413140\/"},"modified":"2026-01-14T21:24:08","modified_gmt":"2026-01-14T21:24:08","slug":"scotts-sister-says-an-unlikely-champion-saved-his-life-ndis-changes-may-stop-others-getting-the-same-help-national-disability-insurance-scheme","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/au\/413140\/","title":{"rendered":"Scott\u2019s sister says an unlikely champion saved his life. NDIS changes may stop others getting the same help | National disability insurance scheme"},"content":{"rendered":"

Scott Clough\u2019s life was saved by an unlikely champion, says his sister \u2013 the administrative review tribunal.<\/p>\n

The tribunal is the appeal site of last resort for people, like 47-year-old Clough, who dispute decisions made about the support provided by the National Disability Insurance Scheme (NDIS).<\/p>\n

Clough has cerebral palsy, quadriplegia, epilepsy, is blind and non-verbal. He uses a wheelchair and communicates using a communication book, as well as through tapping his left hand against his sister\u2019s to indicate agreement. Clough is also cheerful and funny. He is smart, constantly studying, and loves space, Harry Potter and Christmas movies, says his sister and primary carer, Julienne Verhagen.<\/p>\n

Since late 2019, Clough\u2019s NDIS funding has enabled him to live with Verhagen, with 24\/7 support from carers. This means he does not need to be in a supported independent living facility \u2013 \u201ca group home\u201d, as Verhagen calls it \u2013 where she says he experienced some wonderful care, but also neglect and serious abuse.<\/p>\n

But in 2023, Clough got a new NDIS support plan which cut his funding by roughly 50% \u2013 slashed from about $835,000 a year to $415,000 a year \u2013 effectively meaning he would have to move back into supported accommodation as he was no longer funded for 1:1 support.<\/p>\n

\u2018It\u2019s been a big fight\u2019 \u2026 Scott is under constant care from his sister Julienne and they rely on the NDIS. Photograph: Christopher Hopkins\/The Guardian<\/p>\n

Convinced that would lead to her brother\u2019s death, Verhagen began the process of appealing against the plan.<\/p>\n

\u201cI told him, \u2018over my dead body\u2019,\u201d Verhagen says.<\/p>\n

After their internal NDIS appeals were rejected, Verhagen turned to the administrative review tribunal (ART). Eventually, in November 2025, after two years and roughly $24,000 in legal fees, they won almost all of what they had been asking for.<\/p>\n

Clough\u2019s new plan, with 1:1 support, overnight carers and reinstated therapies, was signed off by the National Disability Insurance Agency (NDIA). It was worth $1.28m a year, roughly triple the plan amount they had been appealing against.<\/p>\n

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\u201cAs flawed as the ART process is \u2013 and it\u2019s seriously flawed \u2026 and very intimidating \u2013 it was the only choice we had, and he would not be alive today without it,\u201d Verhagen says.<\/p>\n

Clough is not alone. According to data released by the ART<\/a>, in the year to June 2025, 7,935 new cases were lodged with the tribunal of people appealing against NDIA decisions, a 95% increase on the year before. The NDIS reports 7,132 new cases \u2013 a 76% increase on the year before. The ART and NDIA were contacted with questions about the discrepancy and each said their numbers were accurate reflections of the data they had.<\/p>\n

According to the ART, in nearly three-quarters of cases (73%) in the eight months to June 2025 (the period for which data is available), the NDIA\u2019s decision was overturned \u2013 much higher than for any other area covered by the ART, which also makes decisions on topics such as migration, taxation and workers\u2019 compensation.<\/p>\n

\u201cIt\u2019s been a big fight,\u201d Verhagen says, turning to her brother and clasping his hand in hers so he can respond.<\/p>\n

\u201cDo you feel relieved?\u201d she asks him. He looks at her pointedly and does a very slow hand clap against hers. She laughs. \u201cYou\u2019re looking at me going, \u2018yes, of course, that was a stupid question.\u2019\u201d<\/p>\n

A system without checks and balances<\/p>\n

Now their fight is over, Verhagen and Clough have fears of a different kind.<\/p>\n

A Guardian Australia investigation last month revealed<\/a> that the government plans to drastically reduce the ART\u2019s power to change people\u2019s NDIS plans from mid-2026, as part of a major overhaul of the NDIS.<\/p>\n

The investigation revealed that under the new system \u2013 called New Framework Planning \u2013 support plans will be generated by a computer program and NDIS staff will have no discretion to amend them, in a move condemned as \u201crobo-planning\u201d by disability advocates<\/a>.<\/p>\n

The NDIA has said New Framework Planning will reduce human error and increase consistency in the development of support plans and that humans will still be involved in conducting the assessments, the results of which are fed into the computer program.<\/p>\n

Scott is concerned for others who might face a system without the checks and balances that restored his funding. Photograph: Christopher Hopkins\/The Guardian<\/p>\n

The Guardian\u2019s investigation also revealed that under New Framework Planning, if NDIS participants appeal, the ART will no longer have the authority to alter a person\u2019s plan or reinstate funding<\/a>, but will only be able to send the plan back to be recalculated using the same computer-based tool, according to legal advice cited by NDIA bosses.<\/p>\n

Belinda Kochanowska, the founder of Intrepidus Law and a disability law expert, calls such an approach a \u201cloop-de-loop appeal right, of being constrained to asking for the support needs assessment tool to be simply used again and again and again\u201d.<\/p>\n

Legal experts have warned that if these changes are implemented, the impacts could be devastating.<\/p>\n

\u201cThere\u2019s been many, many changes to the scheme and this is going to be, in my view, a catastrophic one,\u201d Kochanowska says.<\/p>\n

\u201cI cannot see this not causing harm.\u201d<\/p>\n

Naomi Anderson from Villamanta Disability Rights Legal Service agrees that reducing the power of the tribunal would be \u201ccatastrophic\u201d for participants.<\/p>\n

\u201cThe tribunal is the independent arbiter \u2026 they can override the decision and make a better one. We\u2019re about to lose that with new framework plans.\u201d<\/p>\n

Anderson says having a robust appeals mechanism is particularly important given the government is looking to introduce a computer-based system for generating NDIS plans.<\/p>\n

\u201c[The new system] is predicated on the big assumption that the [computer] program is good, it\u2019s sound and reliable and consistent and safe and well-tested and all the bugs are worked out. I\u2019m sorry, all the bugs are not worked out of anything at the NDIS,\u201d she says.<\/p>\n

\u201cSo what if you run through this process and somebody who has incredibly high support needs ends up with a plan of a quarter of what they need? What happens then? If nobody knows how it works and nobody has authority to override that, then what?\u201d<\/p>\n

\"MostMost NDIS participants to lose external avenue to dispute funding under new system – video<\/p>\n

Clough is concerned for his friends in the disability community who might face a system without the checks and balances that ultimately restored his funding.<\/p>\n

\u201cYou\u2019re very worried about those people and what\u2019s going to happen to them, aren\u2019t you?\u201d Verhagen asks Clough.<\/p>\n

Clough claps his hand against Verhagen\u2019s over and over.<\/p>\n

What if a machine gets it \u2018completely wrong\u2019?<\/p>\n

At a Senate estimates hearing in December, NDIA executives as well as the NDIS minister, Jenny McAllister, were pushed repeatedly to respond to the Guardian\u2019s revelations and lay out exactly how appeals would work<\/a> under the new system.<\/p>\n

Matthew Swainson, a deputy CEO of the NDIA, eventually confirmed that the ART would no longer have the power to change the total amount of NDIS funding people receive \u2013 as, for instance, it did in Clough\u2019s case – something the Greens senator Jordon Steele-John called a \u201csignificant change in the role of the ART\u201d.<\/p>\n

The Liberal senator Anne Ruston questioned how such changes could be made without further amendments to legislation, but was told that this legislation had passed last year.<\/p>\n

Scott\u2019s new NDIS plan includes 1:1 support, overnight carers and reinstated therapies. Photograph: Christopher Hopkins\/The Guardian<\/p>\n

Kochanowska says that any senators who were shocked by this simply had not been paying attention.<\/p>\n

\u201cThis has been in the legislation since October. And very experienced advocates and lawyers in this space, when we were providing evidence to the Senate committee inquiry on the NDIS bill, were very clear about our concerns on this.\u201d<\/p>\n

Anderson says there is still an avenue for the strong appeal role of the ART to be maintained, citing the NDIA\u2019s contention that \u201crules\u201d governing the way decisions will be made about NDIS plans under the new system were still being developed.<\/p>\n

In a statement, a spokesperson for the NDIA says: \u201cThe NDIA and the Department of Health are working on the design of new framework planning rules with the disability sector and the states and territories. These rules will determine the specifics of the new support needs assessment process.<\/p>\n

\u201cPublic consultation will start in early 2026 to hear the community\u2019s views on the new framework planning rules.\u201d<\/p>\n

Anderson says she hopes there are some safeguards.<\/p>\n

\u201cI would hope at an absolute minimum that the rules include something around risk assessment \u2013 risk to the participant, not the agency,\u201d she says.<\/p>\n

\u201cSomething that gives us any hope that if the machine gets it completely wrong, there is a human being who can do something.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Scott Clough\u2019s life was saved by an unlikely champion, says his sister \u2013 the administrative review tribunal. The…\n","protected":false},"author":2,"featured_media":413141,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[43,44,41,39,42,40],"class_list":["post-413140","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\/413140","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=413140"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/413140\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/413141"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=413140"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=413140"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=413140"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}