Thriving Kids and the NDIS reset

Thriving Kids and the NDIS reset

Some major changes to the National Disability Insurance Scheme (the NDIS) have been announced by the Albanese Government, and they stand to affect tens of thousands of families. Under the reforms, children with mild autism will be shifted to a new early-intervention program called Thriving Kids. But it’s caught a lot of parents off guard, along with state and territory governments, who will need to help fund it... So in this Squiz Shortcut, we’ll look at:

• what’s changing

• why it’s happening

• and where things are up to…

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Squiz the Shortcut

What’s the issue with the NDIS?
It’s become a bit of a juggernaut that’s gotten out of control. Putting it really simply, there are a lot more participants than it was originally designed for. It’s called ‘scope creep’, which means the parameters for disabilities covered by the scheme have been expanding over the years, and the costs have blown out.

OK, so what’s the plan to fix it?
Back in August, some changes to the scheme were announced by the Minister for Health, Disability and Ageing, Mark Butler. They’re designed to bring it back in line with what it was originally set up for, and to bring costs under control.

What sort of changes are in store?
As you might imagine, reforming the NDIS is a big and complex topic, so instead of trying to tackle everything at once, we’re going to zoom in on the headline change that was announced by the Minister - that’s the Thriving Kids program - and explain what that’s about. But before we do that, it might be helpful to understand what the purpose of the NDIS is and why it was set up in the first place…

Let’s dive in… What was it designed to do?
The scheme was launched in 2013 by the Gillard Government, and it was set up to provide individually tailored, long-term support for Australians living with permanent and significant disabilities. 

What was in place before it?
It replaced a kind of patchwork arrangement of state-based services that were underfunded and provided very inconsistent service. Basically, where you lived could determine the sort of support you got… At least, that was the feedback from health and disability groups that fed into the grassroots campaign for a fairer, nationalised system that led to the NDIS.

Got it… How does the NDIS work?
It’s fitted to the individual’s needs - so, people work with planners to get funding for things like alterations to their homes if that’s needed, mobility equipment, support workers, and various therapies. And for a lot of people, it’s been life-changing… 

How many people are part of the scheme?
Around 739,000 people as of June - but that’s far more than was ever anticipated. When the NDIS was first costed up, the Productivity Commission forecasted there would be around 410,000 participants by this time. In terms of numbers, it was meant to cost about $22 billion per year - it’s now blown out to more than double that…

What do the numbers look like now?
It’s now heading for $50 billion per year - and it could reach $125 billion by 2034 if nothing changes… That’s why the government has been saying for a while that the scheme needs a reset. So, the plan is to scale it back to the people who it was set up for - those with permanent and severe disabilities, as opposed to those with less complex or short-term needs… Which brings us to autism…

How many people with autism are part of the NDIS?
Autism has become one of the biggest growth areas in the NDIS. Around 40% of participants have a primary diagnosis of it. And, just so we’re clear on what it is - autism is a neuro-developmental condition that affects how a person’s brain develops and functions. It’s not just a flat diagnosis; it occurs on a spectrum… 

Just explain that a bit more…
For some people, it means profound disabilities like being non-verbal or being unable to cope with certain sensory things like loud sounds and bright lights. But in milder cases, people might have differences in the ways they learn, they might have difficulties in expressing themselves or understanding social cues and norms, and that can sometimes be interpreted as behavioural issues. 

So, under the NDIS reforms, what’s going to happen to people on the milder end?
Well, cases at the milder end of the spectrum make up a lot of that 40% (for example, children who might need some support but not necessarily the intensive, long-term funding that the NDIS was designed to provide). This was something highlighted by the federal government’s review into the NDIS, which was handed down at the end of 2023…

What did it say?
The review found that the NDIS had become a “catch-all” that was making up for a lack of mainstream support for those cases in schools and local health services. Parents have been told that the NDIS is their only way to get therapy or behavioural help for their kids, so naturally, they apply for assistance, and many of them are accepted. But the result of that is that the NDIS is now overstretched - and that’s putting a lot of pressure on the budget… 

Tell me more about that…
The government says the NDIS can’t keep growing at its current rate, which is tracking at around 10% - faster than spending on defence. So, from next year, new measures will start limiting who qualifies and what supports are covered. Along with that, the annual growth cap for the scheme has been revised down to 8% (with a view to reducing it even further down to 5-6% over the next 4 years).

What do those new measures look like?
To help achieve this, and to alleviate that budget pressure, the government is planning to shift thousands of children with mild autism and developmental delays off the NDIS and into a different support program called Thriving Kids. It wants to start rolling out services from July next year, with the goal of having it fully up and running by mid-2027. 

Tell me about Thriving Kids…
It’s an early intervention program that the Albanese Government says will provide better support for children with mild autism and developmental delays, without them needing to be on the NDIS. It’s still in the design phase, so concrete details about how it’ll work aren’t widely available yet, but the broad idea is that it’ll apply to all children aged 8 and under, and it’ll be delivered through local health and education systems…

What does that mean in practice?
Again, details are scarce, but reports say that instead of parents applying for NDIS funding, kids would be referred to services like speech therapy or occupational therapy through their doctor or their school, or preschool/childcare centre… But the first phase of the rollout - the announcing bit - hasn’t gone over smoothly… 

Why not?
The news blindsided a lot of parents, as well as state and territory governments, who say they weren’t properly briefed about the fact that they’re expected to co-fund the new program.

How much will Thriving Kids cost?
Minister Butler says the federal government will put up $2 billion over 5 years, but the states will be called on to chip in too. A few Premiers - David Crisafulli in Queensland, Chris Minns in NSW and Victoria’s Jacinta Allan - have pushed back to say they were caught off-guard by the announcement, and they’re unclear about how the program will work, and how much money they’ll be up for. But Butler says they’ve been in talks about it for nearly 2 years. 

And how did it go over with families?
The uncertainty around the new arrangement is causing some real anxiety in a lot of households, and many parents have vented their frustrations in the media since the news broke. A lot of them say their kids have benefited enormously from NDIS-funded therapies and they’re worried about losing access to that support… Also approaching with caution are autism advocacy groups. 

What are they saying?
Australian Autism Alliance and Aspect have both welcomed the move, but they've raised concerns about the possibility of a gap in the transition between programs. A parliamentary inquiry into the program has also heard similar concerns from families worried about being left in limbo while the new program is being set up… 

What does Minister Butler say about that?
He says parents and carers shouldn’t panic - no one will be cut off overnight or anything like that, and he’s assured people that the government is working with the states to make sure there’s no gap in support… Still, that might not stop people from feeling nervous in the lead-up. 

So, there’s still a way to go yet?
Sure is, so we’re bound to hear a lot more about it before services start to roll out from the middle of next year… 

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Onto our Recommendations

Reading: Here’s the transcript of Mark Butler’s address to the NPC, so you can read it for yourself - and here are some fact sheets released by the government on Thriving Kids…

Watching: This video by Orion Kelly, who goes by That Autistic Guy on YouTube. He’s got 215,000 followers, and he talks about why he’s worried Thriving Kids could take families back to the pre-NDIS days. He reckons there could be fewer choices for families, particularly those in regional areas, and he questions why the government’s “cost problem sits with autistic people”.

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