While many GPs believe the NDIS needs improvement, few buy into Mark Butler’s underlying premise that many autistic children are receiving excessive therapy…

When Health Minister Mark Butler unveiled the government’s plans to divert kids with mild to moderate developmental delays and autism away from the NDIS to a new support program, he cited spiralling costs and an alarming proportion of children aged under 9 in the NDIS – including one in six grade 2 boys.

The implication was that many were being unnecessarily pathologised, and as he put it, “overserviced.”

“The extent of therapy provided to those children now in the NDIS is extremely high, compared to anything you’d see in the health system,” Minister Butler said.

“On average – just average – a young NDIS participant with moderate needs is receiving more than 70 therapy sessions per year,” he said.

“There is no evidence I’m aware of that supports children being taken away from learning and other activities for that much therapy.”

It is this belief that underpins the plans for Thriving Kids, the program that will replace the NDIS for these kids.

But is he right?

Just 16% of GPs believe their relevant paediatric patients are getting more support than is warranted by their clinic needs, according to a Healthed survey of about 1200 GPs. In other words, only a tiny fraction of doctors agree with Minister Butler’s hypothesis.

Moreover 29% of GPs say these patients are getting less support than they need under the NDIS, while 34% reckon the support these patients are receiving is about right.

Most GPs agree reform is needed, with just 18% saying the NDIS is working well for this cohort of children – with many noting inconsistent levels of support.

“This is hugely variable. I have several patients of varying support needs, and the level of support does not often match the level supplied in my opinion. Some get lucky and have a lot of support (sometimes not all is needed) and others need significantly more support,” one GP commented.

Clinical psychologist Professor Tony Attwood, a specialist in autism for over 50 years, says the drive to save money could reduce services that are indeed needed.

He is concerned that people with autism will be left to depend on programs that may not adequately meet their needs, such as family support services and mental health care plans. “Especially when you’ve got depression, anxiety, etc… When the problems are so deep and so difficult to reduce significantly, it’s going to take more than 10 sessions,” Professor Attwood says.

“And GPs will then be experiencing the complaints of their patients that they’re either not getting the services, or they’re reduced services.”

Still, Professor Attwood agrees there is room for improvement.

For example, 46% of GPs said they have one or two, or even a few, paediatric patients with an autism diagnosis they believe was driven by a desire to access resources that weren’t fully warranted by their clinical severity.

“Whenever finance is available, there will be people who rort the system,” Professor Attwood said. “And there must be provision to prevent that occurring.”

Diagnostic drift

“One of the problems is if you use a system of diagnosis as a gateway to support, then where do you draw the line, because it is not an exact science. It’s not like Down syndrome, where you can look at chromosomes and confirm it. This is a matter of opinion,” Professor Attwood says.

“And the difficulty is this particular child needs services. If the paediatrician, for example, says that they’re not autistic, then they get no services. If they say they are, then they may be, in benevolence, making a decision to confirm the diagnosis, when in fact, they are very sceptical of the diagnosis. But otherwise, there’s nothing,” he says.

“So the categorical system — diagnosis, you get support; no diagnosis, nothing — I think that needs to be also modified. It should be based on the person’s needs rather than diagnosis.”

Other experts say a system where children with severe autism can still access the NDIS while others with mild to moderate autism are funnelled into Thriving Kids could accentuate ‘diagnostic drift.’

“Some health professionals or families may seek a diagnosis that gives them access to better support,” they say.

What your colleagues are saying

“Level of support is adequate, but accessing it is harder for some due to location, rural, waiting lists etc.”

“There are some families I have that seem very well supported, and some that are definitely unsupported.”

“In my experience, support through the NDIS for children with mild to moderate developmental delay or autism can be inconsistent, with some families navigating long delays and variable access to therapies. While many benefit significantly, the level of support is often not well matched to need, and navigating the system can be burdensome for families.”

“Some providers are providing the appropriate supports for the patient’s needs. Some, on the other hand, are providing excessive and unnecessary support that does not align with the patient’s clinical needs.”

“Some patients seem to be getting much more funding than they really need, and some seem to not qualify at all; very inconsistent.”