Autism experts still in the dark on Thriving Kids initiative

The Thriving Kids initiative is federal government’s NDIS alternative for children 0-8 years with developmental delays and/or autism. It was announced as NDIS Minister Mark Butler vowed to cut more than $36 billion dollars from the scheme over the next four years. 

Thriving Kids begins its rollout in October. 

While advocates and experts are optimistic about early intervention, many say the best-case scenario is currently theoretical. 

Dr Amanda Mazzoni is a psychologist with a PhD in autism diagnostics and intervention. She is the CEO of the Humanity Health Group and co-founder of Care Squared Kids.

“I am in two minds about Thriving Kids,” says Dr Mazzoni.

“There is a huge push towards diagnosis, when it may not be necessary, and that holds up kids from getting services. And we're seeing a delay in service.”

Dr Mazzoni says that families really do need support, but they have to ‘scramble’ to get it, and without a diagnosis, they get kicked off the NDIS. 

“What I'm hoping for is something more tailored to early intervention. But what I'm really worried about is that nobody knows. Everybody only knows about 10% of the [Thriving Kids] model.”

“There's such a lack of transparency right now.”

Screening, delivery, and workforce concerns

Dr Mazzoni says there isn’t much information about what standards will govern Thriving Kids. Take screening, for example. 

“Right now, in the NDIS, you have ECEI (Early childhood early intervention) providers who will capture children, go to the preschools, do some observations, get some reports if necessary. And then you'll get a package from the NDIS.”

“I don't know what that looks like going in [to Thriving Kids].”

“You go in through a screener, almost from a GP now; a 3-year-old developmental screener, or something broader. It looks like they might get practice nurses to do it [as well].”

“I'm hoping it’ll go through schools as well, but [the other] is what we know is confirmed. And then it will be a 3-part process. There’ll be an assessment phase, I'm assuming. That assessment phase is not known.”

“And then you'll go into a tier. Tier 1 is parenting courses, parent groups, things like that. Tier 2 is a more like group therapy. Tier 3 is one-on-one supports with allied health. We don't know which people will fall into which tier.”

Dr Mazzoni has other concerns.

“Are you using evidence based best practice? Because best practice hasn't just started to happen. Best practice for early intervention has been around for a long time.”

“We don't know the frequency of sessions. We don't know if it's community-based, in-home, in-school. We don't have clear information on the delivery, the mode, the cadence or frequency, duration, or the intensities of services.”

“And then we need to have transparency on who runs these models. Who's going to be doing group therapy, one-on-one sessions, allied health?”

“Who is signing off? You must know what you're looking for and understand observations over time. What does it look like in the school environment? At home? GPs aren't going to do that.” 

“And it's not no shade on GPs. It’s just a time issue.”

“Diagnostics takes a long time because it should. You need specific knowledge if you're determining whether it’s an NDIS package or a tier in the Thriving Kids.”

“Because you’ve taken it out of the family's hands. And out of specialists' hands. You've given it to — well, we don't know.”

Professor David Trembath is the head of autism research at the Kids Research Institute Australia (interviewed here for InSight+). He helped create national guidelines for supporting autistic children. He told the ABC that it is “impossible to draw a clean line" between "low, moderate or high" support needs.

"My main concern is that there might be a group of children who are somewhere between Thriving Kids and the NDIS who have the potential to miss out on the supports and services that they need."

A states issue

The ABC reported in June that Dr Tim Jones, the Child and Young Person's Health Chair for the Royal Australian College of GPs and member of the Thriving Kids advisory panel, had concerns about the rollout of the initiative.

“A state-based model is a departure from the panel's original intention and could leave vulnerable families at risk,” said Dr Jones, noting that when the panel handed its report to the government, it did not expect the states to take on as much responsibility for services on the ground.

Dr Mazzoni says that the states creating different programs could mean varying results, less consistency, varying quality of assessment, and an unnecessary reproduction of systems.

“Each state is very, very different in who they are employing to do the work. New South Wales have said only NGOs, no private. Other states are open to private. We still don't know.”

“It's not standardised because it can't be, and each state gets to choose how they roll it out themselves.”

“What would be really interesting … is to see which model becomes more effective. Because they're rolling it out in different ways based on early childhood ECEI findings from the NDIS.”

“It will be interesting to see the outcomes, and if other states adopt different models over time.”

“I sat on a Thriving Kids panel for the ACT. They engaged providers, paediatricians, allied health, primary care. There was a cross-section of the community. It was excellent … there was a convergence on what we thought could be done better.”

“Families are either right now scrambling to get a diagnosis to stay on the NDIS because they're either too scared of the unknown, or they're just waiting. They’ve either silently lost their package because that's happening without saying it's happening, because it absolutely is happening, or they're just going to wait until this happens and they don't know.”

“It's very serious if you think about what they hold in their hands.”