May 28, 2023, Sydney Morning Herald: The autism trials that could divert thousands of children away from the NDIS https://amp.smh.com.au/national/the-autism-trials-that-could-divert-thousands-of-children-away-from-the-ndis-20230524-p5davh.html
Thousands of babies and young children showing early signs of autism could be diverted into early intervention programs each year under changes being considered by the Albanese government to reduce the burden on the National Disability Insurance Scheme (NDIS).
Autism diagnoses are surging, with 11 per cent of boys aged 5 to 7 and 5 per cent of girls in the same age bracket now on the NDIS: a jump of almost one percentage point in just three months. At 54 per cent, autism is the most common disability for NDIS participants under 18 years old.
Results from a trial of treatments for infants showing early behavioural signs of autism in 2021 showed early intervention could reduce early developmental disability so dramatically that a childhood clinical autism diagnosis was two-thirds less likely. This year, three separate pilot programs involving up to 2200 children will assess the impact of early intervention on very young children.
NDIS Minister Bill Shorten said if the pilots replicated earlier successes, they could provide “a new and exciting way” to support future generations.
Melbourne woman Sarah Hockey, who supports family members and clients with autism, said accessing appropriate support for one of her family members through the NDIS had taken 18 months.
“I had to fight tooth and nail to get the support,” she said. “The NDIS pushes responsibility for getting help onto individuals, who may not have the literacy, advocacy or resilience skills to know what to ask for. There’s a lot of inconsistencies within the system.”
Separately, an independent review into the design, operation and sustainability of the scheme is expected to consider whether children diagnosed with level 2 autism – classified as requiring “substantial support” – should be required to demonstrate their level of incapacitation before qualifying for support under the NDIS.
Children diagnosed with level 2 autism are automatically eligible for NDIS support, without parents needing to show the effect their disability has on their child. In the past six months, almost 17,000 new participants joined the NDIS, with autism listed as their primary disability.
There are concerns within government and among some experts that more severe autism levels are being over-diagnosed, so families can receive support for their struggling kids. Hockey is not so sure.
“I think there’s been education around support needs for people with autism,” she said. “But it’s very simplistic to be relying on levels [of autism to assess care needs]. It should be about the function of the person. It’s all very individual, and it should be based on the person.”
A Sydney father who asked not to be named because he is involved in an appeals process with NDIS said “armchair parents” who didn’t think autism was a significant disability should think again.
“When you’re the parent of a disabled child, your expenses go up, but your capacity for earning goes down,” he said. “Therapies and treatments for a child with autism can easily run into the thousands of dollars per month.
“Without NDIS funding we would be between a rock and a hard place. Rather than autism being over-diagnosed these days, perhaps it’s possible it was under-diagnosed all this time.
We may now be only beginning to understand that humans can be far more neurodiverse than originally thought.”
The federal government last month announced a pilot program run by Telethon Kids Institute and University of Western Australia would invite about 700 families whose young children show early signs of autism into early intervention. A second pilot program, at two locations yet to be announced, will include up to 1500 families.
Shorten said previous trials had reported that commencing the program in infancy – as early as nine months – could reduce early developmental disability to the point where a childhood clinical autism diagnosis was two-thirds less likely.
He said the federal government was working with the states and territories to ensure that Australians with a disability would receive the support they need.
“The NDIS was never meant to be the only lifeboat in the ocean for disability supports, but while services in areas like education, early childhood supports and health are unavailable or scarce, people are going to do whatever they can to support their children – I understand what parents who love their kids will do,” he said.
The NDIS has already blown its $34 billion budget for this financial year and is expected to cost $51.8 billion by 2026, climbing by about 14 per cent annually.
Shorten has committed to finding $15 billion in NDIS savings over the next four years, although this target does not include money lost to fraud or savings identified by an ongoing review of the scheme.
“We have inherited a scheme that works well – in fact is life changing – for hundreds of thousands of Australians with disability,” he said....