21/08/2025
ANPA President Sarah Langston speaking on the Announcement.
ANPA President Sarah Langston was invited today to speak on the Announcement on ABC Radio Sydney this morning.
The transcript is below. Sarah made the point that individualised supports, and direct guidance by DPROs on policy, are requirements of the - noticeably lacking from the Minister's announcement.
She also pointed to the fact that Inklings has no long term evidence of safety or efficacy, and the Federal government has failed to address these concerns despite them being repeatedly raised by and the general public.
Nothing About Us Without Us, folks! With deepest thanks to the 702 crew for the chat, and to Amaze for backing in our points with their own, solid explainers. Stronger together, fam.
You can catch Sarah speaking on Radio about the announcement at 10.15am today.
TRANSCRIPT BEGINS
7.35am
CRAIG: The Disability Minister, Mark Butler, announced big changes to the National Disability Insurance Scheme.
He said that more than half of new participants on the the scheme are under 9 and 7 in 10 people joining the scheme have autism as a primary diagnosis.
And to replace this over the next couple of years, they're going to bring in a new thing called Thriving Kids program, which will be for people with mild to moderate levels of developmental delay in Autism.
Here was the minister speaking about Thrive program yesterday.
MINISTER BUTLER: We do need, as a matter of urgency, to create a better system that will enable our children to thrive.
They are precious. We all love them. They're our future. Children with mild, moderate developmental delay or autism need a robust system of support to help them thrive.
A program for thriving kids. And that's the program that I intend to deliver.
CRAIG: Yeah. Look, it seems to be some support for this, some concerns, but also a lack of details out there.
Sarah's Good morning, Sarah, good morning. How are you? Very good. You're the president of the Australian Neurodivergent Parents Association.
You have some concerns about this change?
SARAH: Yes, I do, and I think it reflects pretty significant concerns of the parenting community.
I think the first concern is that some of the language that's being used around Autism doesn't reflect the diagnostic criteria that we have.
So mild and moderate Autism is not the language that clinicians use, and I think another big concern is that there's no long term safety data around the Inklings program.
So this is a program that's been spoken about, but there's actually no long term evidence for Inklings and there's no safety data around it long term as well.
This is a concern we've raised repeatedly with governments since this program first came on the scene and those concerns have never really been meaningfully responded to - and they are reflected in the views of quite a lot of parents.
I think a big issue is that the programs being spoken about are not individualised supports and individualised supports are actually what's required for Disabled children under the UNCRPD.
So there's quite a few things going on there.
CRAIG: Yeah, absolutely. And Sarah, you said that the kind of mild to moderate these kind of levels are not generally how Autism is discussed or described - but according to the government, those with more severe forms of Autism will still be accepted onto the NDIS.
Do you think it's not easy to do this kind of in a diagnostic way and distinguish between moderate and extreme, for instance Autism?
SARAH: Well, I think what's critical here is that the Australian government actually has obligations as a signatory to the UNCRPD to be guided by DPROs like us - and we don't recognise those terms.
I think - yes, we do recognise that there are different levels of support needs.
There are definitely people who need higher levels of support and people who need lower levels of support.
So I'm Autistic myself, I need a lower level of support than someone who for instance is an Autistic person who is non-speaking and might have a co-occurring Intellectual Disability.
Absolutely acknowledge that.
However, every Autistic person has a right to individualised support, regardless of support needs.
CRAIG: So support needs might be lower. You don't think thriving kids is going to offer individualised support?
Is that your concern?
SARAH: No, no it isn't [going to offer that support]. So the kinds of programs that are being spoken about, when you look at Inklings, it's an example of what, you know, people in Allied Health would refer to as a ‘tick and flick’ program.
So it's a program where someone goes in, in this case babies go in, and they do a certain number of sessions and then they exit the program.
There's very little follow up. And we can also see this already happening. So it's being trialled in WA and we are hearing, boots on the ground, that there's very little follow up.
Families are going in and going out. So this is not, this is not individualised supports.
CRAIG: Yeah. Okay.
SARAH: Allied Health supports are evidence based. We've had them for decades. They do work.
CRAIG: All right, thank you, Sarah. We appreciate your perspective on that. We're also now joined by the CEO of Amaze Australia, David Tonga, who's Amaze Australia is about creating an autism inclusive Australia.
David, what are your views about this potential change in trying to move people off the NDIS if they have mild or moderate levels of autism and onto the this thriving kids approach?
DAVID: Yeah, thanks Greg, and thanks for the conversation.
I think we largely agree with Sarah. I think there's language that's been bandied around that's very othering and very critical of parents and children.
And bear in mind NDIS review is still not fully completed.
You know, the reforms fully not completed. We've gone from a diagnostic based criteria to a functional assessment and support needs assessment.
Now back to diagnostics that don't really exist from a moderate to severe and everything else that's just not good language and not good for the community.
CRAIG: Do you agree, David, do you agree that there's a problem here?
I mean, the NDIS is kind of blown out. It's got 300,000 more people than it was probably expected to have.
A lot of those people, more than seven in 10 people joining the scheme have autism as their primary diagnosis.
16% of 6 year old boys are on the NDIS. Do you agree there needs to be some kind of reform to this or do you think that the NIS should expand to deal with this?
DAVID: Look, I think, I think there's a few things and Minister Butler, you know, we welcome the, you know, significant investment in therapy and supports for children.
You know, often children are awaiting an assessment.
Can be two years and thousands of dollars out of pocket.
So if we really go to what the needs are of the individual and, you know, not necessarily focus on the diagnosis, you know, autism doesn't end when you turn 10.
And I think that's what Sarah was saying, the previous caller.
You know, it's lifelong permanent disability and so we've got to be careful that we're not just using a one size fits all.
But you know, Minister Butter also mentioned Amaze Autumn Connect and said that was a good program and that's the program that we run, that's the National Autumn Helpline.
We've chatted to over 60,000 people the last five years and we've had hundreds of calls already saying what is this?
What do I do? Am I eligible? Am I not? Should I review our plan? Because the eligibility criteria is not clear cut.
I think there are opinions in the community, community around what it's going to look like, I think it is moving to kind of a maybe a lower level of support potentially, but we just don't know the details.
CRAIG: Yeah, it feels like this is it. The announcement yesterday. The announcement yesterday kind of was a bit of a surprise to start with and didn't come with a lot of details.
So a lot of people in the community, we've had people with this calling up this morning saying, you know, I've got grandkids with Autism and the parents are really worried now.
So, yeah, a bit of concern out there. Thanks for speaking to us, David. We'll see if we can get some more clarity from the government over the next couple of days.
Thanks, David TONGA There, the CEO of Amaze Australia.
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Reframing Autism Yellow Ladybugs Gladstone Region Autistic & Neurodivergent Network Inc - GRANN People with Disability Australia Women With Disabilities Australia (WWDA) Regional Autistic Engagement Network
