<div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The federal government's bombshell announcement that it will remove 160,000 people from the National Disability Insurance Scheme (NDIS) has sent a wave of anxiety through the disability community, leaving carers and people with autism questioning where they will turn for support.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>In a move designed to curb the scheme's 10 per cent annual growth and save the budget $35 billion over the next decade, Health Minister Mark Butler confirmed yesterday the government will move away from a "diagnosis-based gateway." </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Instead, a new assessment tool - slated for 2028 - will determine eligibility based on a person's "functional capacity."</span></div></div><div><div id="adspot-mobile-medium"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/ndis-changes-announcement/22da4bdd-95d2-4ab8-a9f0-1ee26918dc90" rel="" target="" title="What does the NDIS overhaul mean for you?"><strong><span>What does the NDIS overhaul mean for you?</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>For the autism community, which makes up nearly half of all current participants and four in five new entrants, the news has been met with a mixture of pragmatic acceptance and deep-seated fear.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Autism Awareness Australia CEO and founder, Nicole Rogerson, said while the reforms were "long overdue" in terms of cleaning up fraud and slowing a "runaway train of costs," the human impact remained the primary concern.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"I do hope everyone doesn't panic too much in the short term," Rogerson said. "People are very, very nervous. They don't like change, and they're nervous about what it means."</span></div></div><div><div class="OUTBRAIN" data-reactroot="" data-src="//www.9news.com.au/national/measure-twice-cut-once-nervousness-grows-as-people-with-autism-face-ndis-exit/50b35621-d983-4e9d-9180-bf046563fa27" data-widget-id="AR_5"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><h3><span>A shift from diagnosis to need</span></h3></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Under the current rules, a diagnosis of Level 2 or 3 autism often guaranteed access to the scheme. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Minister Butler intends to scrap these "access lists," arguing that the NDIS should be reserved for those with the most significant, permanent disabilities.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Rogerson said she supported the shift toward functional assessment in theory, noting that the label of autism had become so broad it often failed to describe a person's actual struggle.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"The word itself doesn't really tell you much about the person," she said. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"For some people, their autism is much more of an identity... for other people, it's a devastating, serious and profound disability that affects their whole life. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"It's okay for us to do an assessment of need before we decide what funding someone will get. That's just reasonable."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>However, she cautioned that the government must use a "scalpel, not a machete" when carving out these new rules, stressing that the quality of the assessment tool will be everything.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><h3><span>The 'Thriving Kids' gridlock</span></h3></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Rogerson said what parents feared most was being caught in a political tug-of-war. The Commonwealth's plan relies on diverting children with "low to moderate" needs into a new $4 billion state-run program called "Thriving Kids."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The problem is that the program does not yet exist. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Queensland has already refused to sign on, arguing federal funding is insufficient, leaving a massive question mark over what happens to the 160,000 people scheduled to leave the NDIS.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"My biggest concern is that the federal government may have made these changes too soon before some of the state services are ready to go," Rogerson said. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"Most parents will say, 'Look, I don't really care where my funding comes from, as long as my child's getting the support they need.' But they do care if the supports go away because this becomes a tug of war between the state and the federal government."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Former Deputy Chief Medical Officer Dr Nick Coatsworth echoed the sentiment that the burden had now shifted to state premiers. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Coatworth said the 160,000 people likely to be removed were largely young boys with neurodiversity issues who "never had a place on the NDIS" and were only there because state education systems had "abandoned" them.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"Parents and carers should be deeply concerned," Dr Coatsworth told the Today show this morning, adding that while the reforms were "absolutely necessary," the focus must now turn to state-funded programs such as occupational and speech therapy within school communities. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"Turn your attention to your state government to make this happen for your kids," he advised parents and carers.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>For many, the NDIS has been the only "lifeboat in the ocean," as former Minister Bill Shorten once described it. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Now, with the government aiming to shrink the scheme to 600,000 participants by 2030, families are left waiting for the "devil in the detail", Rogerson said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"People will accept it a lot better if this is done smartly and well," she said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"I've been saying, measure twice, cut once."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><em><strong><span>NEVER MISS A STORY:</span></strong></em><span> </span><em><span>Get your breaking news and exclusive stories first by following us across all platforms.</span></em></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><ul><li><em><strong><span>Download the 9NEWS App here via</span></strong></em><span> </span><a href="https://apps.apple.com/au/app/9news/id1010533727" target="" title=""><em><strong><span>Apple</span></strong></em></a><span> </span><em><strong><span>and</span></strong></em><span> </span><a href="https://play.google.com/store/apps/details?id=nineNewsAlerts.nine.com&amp;hl=en_AU&amp;pli=1" target="" title=""><em><strong><span>Google Play</span></strong></em></a></li><li><em><strong><span>Make 9News your preferred source on Google by</span></strong></em><span> </span><a href="https://9.nine.com.au/8x987w" target="" title=""><em><strong><span>ticking this box here</span></strong></em></a></li><li><em><strong><span>Sign up to</span></strong></em><span> </span><a href="https://login.nine.com.au/edm?client_id=nineatnine" target="" title=""><em><strong><span>our breaking newsletter here</span></strong></em></a></li></ul></div></div>