Experts say NDIS support a ‘postcode lottery’ as autism diagnoses surge

On one side of the city it’s pony rides and piano lessons for children with autism. On the other side, there’s no help at all. Experts say the NDIS is a ‘postcode lottery’.

Experts are concerned about a growing gap in the National Disability Insurance Scheme when it comes to parents of children with autism, describing the current system as a “postcode lottery’’.

That’s the view of Sydney health professionals at the frontline of a surge in clients.

Nationally, under-18s with autism account for a quarter of participants in the $34bn scheme.

In the NSW public school system in 2021, 375 schools ­catered to at least 4950 autistic children – an increase of 335 per cent since 2013.

Psychiatrist and commentator Tanveer Ahmed said he’d seen first-hand how ­autism diagnoses in children and adults were going “through the roof”.

The number of autistic students in specialist support classes in NSW public schools (2013-2021)

“The inequalities in accessing diagnoses and NDIS support is leading to a gentrification of disability,” Dr Ahmed said.

“Increasingly, it’s favouring people with money and resources … and people of the middle-class Anglo-Saxon variety. In other (cultural) groups there is more stigma.”

Rachel and Taylor Savage with their sons Keanu, 3, and Manaia, 6, at home in Caringbah. Picture: Justin Lloyd.

As of December there were more than twice as many NDIS users with autism in southwest Sydney than in North Sydney, yet participants in the north received about 29 per cent more cash.

One Western Sydney speech pathologist described the scheme as “an absolute nightmare” for families not educated in the complex funding process.

“If you are from a disadvantaged background (and) you don’t understand how the health system works … good luck to you,” the practitioner said. “It’s very much a postcode lottery.”

Clinical psychologist Adam Guastella said even getting a child assessed for autism was a “very costly and time intensive process”, forcing families to fork out $2000 to $3000 on average.

“That’s a clear barrier that affects families of low-income status, as well as … the culturally and linguistically diverse population,” he said.

Meanwhile, Dr Ahmed said for some patients at his private practice a relatively mild disorder was enough to warrant funding for “luxurious” therapies such as horseriding and piano lessons.

“There is a bit of a case for it … but you definitely see it being overserviced,” he said.

Such stories are a slap in the face for Caringbah mum Rachel Savage, who has spent years fighting for a funding plan for her two sons who have autism. Her family only recently received confirmation of NDIS support for six-year-old Manaia and three-year-old Keanu.

“It makes me so angry, when I have to fight so hard for my children that are so sweet and innocent and naive and just need help,” she said.

“I try and put up a brave front for my kids, but other parents – and I know so many – just give up because they’re making us jump through these hoops for our kids.

“Once you understand the system and someone teaches you how to use it, people can just run a mile with it. There’s no … accountability.”