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.
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.”
Instead, a new assessment tool – slated for 2028 – will determine eligibility based on a person’s “functional capacity.”
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.
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.
“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.”
A shift from diagnosis to need
Under the current rules, a diagnosis of Level 2 or 3 autism often guaranteed access to the scheme.
Minister Butler intends to scrap these “access lists,” arguing that the NDIS should be reserved for those with the most significant, permanent disabilities.
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.
“The word itself doesn’t really tell you much about the person,” she said.
“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.
“It’s okay for us to do an assessment of need before we decide what funding someone will get. That’s just reasonable.”
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.
The ‘Thriving Kids’ gridlock
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.”
The problem is that the program does not yet exist.
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.
“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.
“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.”
Former Deputy Chief Medical Officer Dr Nick Coatsworth echoed the sentiment that the burden had now shifted to state premiers.
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.
“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.
“Turn your attention to your state government to make this happen for your kids,” he advised parents and carers.
For many, the NDIS has been the only “lifeboat in the ocean,” as former Minister Bill Shorten once described it.
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.
“People will accept it a lot better if this is done smartly and well,” she said.
“I’ve been saying, measure twice, cut once.”
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