NDIS hot spots revealed: Where Australia’s $9.2bn autism surge has hit the hardest
NDIS spending on autism has more than doubled to more than $9bn in just five years – find out how much gets allocated to recipients in every council area in Australia.
The number of Australians receiving NDIS funding for autism has more than doubled over the past five years to almost 300,000, official figures show.
Taxpayer spending on autism reached a record high of $9.2bn last financial year, more than twice the $4.2bn cost in 2020-21, agency records state.
That makes it the most expensive disability within the $50bn-a-year system, described by some as a “hot mess” and the overall cost of which is growing by more than 10 per cent a year.
Nationally, half of the top 10 council areas for NDIS autism funding are located in Queensland, where Brisbane has the most participants in the country at almost 11,000 and $494m funding.
Moreton Bay, Gold Coast and Logan, all in South East Queensland, are next on the national funding list.
Central Coast leads the way in NSW on $235m, Greater Geelong for Victoria at $223m and in South Australia, Onkaparinga in Adelaide’s outer south on $163m.
The staggering figures show why the federal government wants to divert children with mild to moderate autism or developmental delays from the NDIS into a new, separate early intervention program.
But the states are pushing back, wary of being asked to pay half the cost of running the new Thriving Kids program – estimated to be more than $4bn a year – and angry at it being tied to a hospital funding deal.
The uncertainty has left advocates and families of children with autism feeling they are being left in the dark and fearing their access to support will be cut.
Disability and NDIS Minister Mark Butler said he was “absolutely determined to build a system that supports kids to thrive”.
“Tens and tens of thousands of young children with mild to moderate developmental delay or autism are on a scheme set up for permanent disability,” he said.
“I doubt very much this is what most of their parents really wanted or expected.
“But it’s all parents currently have available. It’s not the parents’ fault.
“Parents and families need guidance to access well-curated, evidence-based support and therapy – most of which existed long before the NDIS.”
The federal government says the Thriving Kids Advisory Group included experts in pediatrics, child development, research, disability, child and family services, health care, early education and schools.
It says people with lived experience of autism and Indigenous experts were included, and insists the states and territories had input too.
But advocates, some who describe the system as a “hot mess”, say the new program will divert children into mainstream systems that multiple national reviews, including a Senate inquiry, Disability Royal Commission and a government audit found to be “not fit-for-purpose and broken”.
Children and Young People with Disability Australia CEO Skye Kakoschke-Moore warned the reforms must not create a two-tier system.
“We don’t want to grow a system where Thriving Kids is the poor cousin,” the former South Australian senator said.
“Both systems need to provide a confidence to families who have for years always been able to access services on the NDIS.
“Families need that confidence that what they are getting through their NDIS plans is also available through Thriving Kids, as many will not have another option.”
Australian Autism Alliance co-chair Jenny Karavolos said the reforms come at a time of widespread hardship including a cost-of-living crisis, housing stress and negative impacts of recent legislative changes to the NDIS.
Ms Karavalos said families faced being redirected into a program lacking clear guarantees that support would be suitable, affordable, accessible or available when early intervention was critical.
“Right now, the NDIS is referred to as the only boat in the ocean,” she said.
“The proposed Thriving Kids program risks becoming the only lifeboat for children with mild to moderate needs. The current system is not working.
“So when families are told a new system is coming, it feels like history repeating.
“It’s like trapeze artists who want to avoid harm. Safety nets must be in place before individuals and families are told to let go of what currently holds them.”
Autism SA executive manager clinical, care and community, Rebecca Morton, said research consistently showed people with autism experienced long-term systemic inequalities such as higher unemployment rates and educational exclusion, poorer physical and mental health, and lower life expectancy.
Ms Morton said a rise in autism diagnoses did not necessarily reflect a rise in rates of people with autism, but rather reflected increased community awareness, especially about how autism presents in girls, women and people with multiple conditions.
“While Autism SA recognises that the NDIS represents a significant public investment funded by taxpayers, we are deeply concerned by the framing of autistic children’s support needs purely in economic terms,” she said.
“Reducing the lives and potential of autistic children to dollars and cents is deeply concerning and contrary to the principles on which the NDIS was founded.
“If an economic argument is to be made, the evidence overwhelmingly supports early, holistic, and autism-specific investment.”
Federal opposition spokesman Phil Thompson said the Liberals were “seriously concerned” at the government telling parents their children would be moved off the NDIS “without any certainty”.
“To make matters worse, the government tied this new program for children with autism to the next national agreement on hospital funding,” he said.
WE CAN’T LIVE WITH THE UNCERTAINTY
For Allan Lindberg Jensen, life is a strain accessing remote services for children with a disability.
The NSW Central Coast dad of two is primary career for his autistic son Felix, 9, who also has a moderate intellectual disability, genetic condition Fragile X, which causes brain development delays and ADHD-type behaviour.
“You’re on constantly – it’s definitely a strain on our family and relatives,” said Mr Jensen, 56, whose wife Sara, 49, works as an emergency strategist.
“I have to be with him all the time because he struggles to socialise with other children and has problems managing his emotions and behaviours.
“This means that he needs someone to ensure he behaves appropriately in mainstream settings such as the playground or the park.”
Mr Jensen, from Daleys Point – an area that has the highest NDIS funding in NSW – quit his job as an IT project manager to care full-time for this son, who has received NDIS funding since 2019.
He said services were limited in regional areas and if a therapist left, it could take up to a year to source new help.
“There’s a whole battle to find out from the NDIS what is needed for him … so we’ve had to largely do it on our own,” Mr Jensen said.
“But we have received fantastic help from Cyda, which is an advocacy group that has helped my family get through this journey.
“Losing any therapy means it stops you from progressing. If you had a good GP, it’s a lot easier. The access to support is really, really difficult.”
Parents Scarlett and Kelsey Illman are also exhausted, after pleas to federal authorities for more help to look after their autistic son fell on deaf ears.
Their boy Spencer, 3, has received National Disability Insurance Scheme funding for speech and occupational therapy over the past 18 months.
Spencer has global developmental delay diagnosis, which has affected his communication.
But his parents, who live at Roseworthy, north of Adelaide, are battling exhaustion, burnout and mounting frustration as they struggle with everyday demands.
The couple, who have been married for five years and own their own disability support company, have another son, aged 15, from a previous relationship.
Scarlett, 26, who with her wife, 34, tried for four years to have a baby through IVF treatment, is unclear about what support they can get next year when autism is taken from the NDIS and placed in the new Thriving Kids program.
She said they have tried to get extra support to help with their struggles.
“It’s frustrating as trying to get the proper therapy and then extra care is very difficult,” Scarlett said.
“We take shifts on different nights so we’re both not exhausted.
“We’re grateful for the care that we do get but there doesn’t seem to be any more help with families of children with severe needs.
“It just seems that we’re all pulled into the autism spectrum (category).”
More Coverage
Originally published as NDIS hot spots revealed: Where Australia’s $9.2bn autism surge has hit the hardest
Join the conversation
Shock figures: The wild number of Aussie kids diagnosed with autism
Read more
Real talk about teens’ social media ban
Read more