03/03/2026
Here is the transcript of the interview with by Minister McAllister by health charity and provider org representative Nicole Rogerson of Autism Awareness Australia.
Comments are off on their YouTube Channnel. They are not here. You are welcome to make your thoughts known. We will provide a report back of comments here, directly to the Minister in writing.
Conflict disclosures and background
since AAA consistently fail to provide this:
1. Nicole was one of the founders of ABA therapy in Australia and owned one of the first large chains, the Lizard Centre. At time of sale a few years ago, the Lizard Centre was worth over 13 million dollars. At last check, Nicole remains a Director. It is now owned by the Nexxt Group. The Nexxt Group are a member of provider lobby group Alliance20.
2. Autism Awareness Australia are a provider of an early intervention parenting support program that will likely benefit from changes to the NDIS. That early intervention program, 'Navigating the Early Years', was designed with Telethon Kids 'The Kids Au' Institute in WA.
3. Professor Andrew Whitehouse, Director of the Board of AAA, was the principal researcher for the trials that underpin the Inklings Program and has been heavily involved in promoting it. Professor Whitehouse is a direct employee of Telethon Kids Institute 'The Kids Au'. The Inklings Program and PACT therapy are two therapies that Telethon Kids own the IP for and both are slated for roll out under Thriving Kids. They are delivered by CliniKids, which is run by Telethon Kids/The Kids Au.
4a. Both programs are derived from the same family of behavioural interventions that Applied Behavioural Analysis is from. Both PACT and Inklings use a modified form of discrete trial training to shape parent, and in turn child behaviours. They do this through strictly timed exercises. In addition, Inklings is done while video taping the parent interacting with their baby, instructing them to move through these times exercises which must follow the same format every time (consistent with discrete trial training), then leaving the room and scoring the parent's performance and then returning to provide 'feedback'.
4b. Late last year, The ANPA made the Federal and State/Territory governments aware of a recently published study from Nahime Aguirre Mtanous which examined over 13,000 insurance records for young people who had been engaged in some form of behavioural intervention (including all forms and all doses). This showed a direct link between exposure to these therapy modalities and increased risk of psychiatric hospitalisation over time.
4c. In 2024, 2025, and in 2026, The ANPA has notified the Federal government of the risks to children and young people as well as their families, of reducing NDIS supports. We have also raised the risks of the modalities provided.
5. The Minister is aware of the risks of these programs to maternal mental health due to what is known as 'social evaluative threat' triggered by filming. We recently tabled our assessment of the Inklings program with her, flagging these risks to mothers and their children. We are also concerned about the development of masking behaviour in mothers and children and insufficient evidence of meaningfully co-designed risk assessment and monitoring of the Inklings program. We have stated these risks to the Minister, to Early Childhood Intervention Australia, to PRECI and to Early Childhood Australia.
6. A copy of that correspondence has been shared with the Special Rapporteur on Disability and relevant media outlets for the maintenance of a public record.
7. Australia is a signatory to the UNCRPD and has responsibilities to consult early, closely, actively and in an ongoing manner with DPOs under Article 4(3) and clarified under General Comment No 7 to the UNCRPD Committee in Geneva (2018). We requested a meeting with Minister McAllister and Minister Butler not long after they were sworn in as Ministers. We were put on a wait list. About four months ago. We are yet to access either Minister for a meeting on any topic.
8. Our children are from the most impacted cohort.
9. No DPO in Australia accepts or uses the terms mild or moderate Autism, nor do they accept or use the term profound or severe Autism. This is not a clinical, diagnostic, or Disabled People's term. It is industry and carer led.
10. Practitioners who implement ABA, PACT and Inklings and other behavioral or developmental-behavioural interventions are not regulated by AHPRA.
Ok. Now those conflicts are disclosed: here is the transcript.
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NR: Welcome Minister Mallister to Autism Association of Australia's discussion this morning.
JM: Thank you. And you of course will call me Jenny.
NR: I imagine I will. I was being really polite to start though. Now I have a really um maybe off-topic question to kick it off. Why are there two NDIS ministers? People ask me this all the time and I give my version of an answer, but I would like to hear your version.
JM: Look, it's a really big portfolio in and of itself. It's one of Australia's most significant social policy interventions and it's really important for a very large group of Australians. Minister Butler has responsibilities across health, disability and aging. And having that combination gives us the opportunity to think really carefully about the synergies between those systems and the opportunities to make the health and the aging systems work better for people with disability. My job is to dive really deep into the NDIS and disability. And what I hope to be able to do is offer Minister Butler really strong advice. And my definition of really strong advice is advice that is grounded in a close relationship with the disability community, people with disability, family, kin, carers, service providers. I really see my job as understanding that deeply so that I can support Minister Butler in the work that he needs to do as the cabinet level minister. It really I love the idea of having um disability at that macro level sitting at the cabinet table with health with aged care it's equally as serious.
NR: Whereas I imagine in your job getting into the weeds of the NDIS can be it must be overwhelming sometimes.
JM: It's not the easiest ministry. Right. Look on the first point um I think the main issue is that we want all the service systems to work well for people with disability and those interfaces with health the interfaces with aged care are some of the interfaces that are most difficult and challenging to manage. So having that advice come from a single department we think will be really helpful to the long-term success of all of those service systems. In terms of my own reaction to the portfolio, lots of it has been really fun and interesting and I think one of the terrific aspects of taking on the role is that people have been incredibly generous. Uh I've needed to learn a lot. People have given me so much time and they've been very patient. I need to ask a lot of questions. people have been very patient about supporting me on that journey and I hope to repay that by being a very serious, thoughtful, responsive advocate for people with disability and their families.
NR: So, let's dig into um we brought you today here because we'd like to talk a little bit more about thriving kids. There's lots of questions about thriving kids. One of them is why did the government make this decision that children or some children with autism would be coming out of the NDIS and moving over into this new system that's called thriving kids?
JM: Look, we'd heard for quite some years now from parents and from experts that the NDIS really wasn't working for that cohort of uh families who had children with low to moderate support needs. And the reason it wasn't working is because early intervention is premised on a fairly rapid response and one that is tailored against the the particular challenges that young people and their families experience if they miss a milestone or have some some some difficulty. The NDIS really isn't structured to respond well to that. In many cases, it's dependent on a diagnosis. It can be time consuming to get into the NDIS and even if you do become a participant you are then allocated a set of resources where as a parent you are then responsible for selecting and choosing and navigating the services that are going to work best for your child. What we've heard from experts and parents starting with the NDIS independent review and then in some of the subsequent work is that we could do better with a much more curated response uh that responds to the evidence and provides parents with really good information and support that's delivered quickly but also is delivered in the settings where families already are. I think lots of your listeners will be familiar with some of those service delivery models. You know, they they continue to exist in states and territories to varying degrees. They were much more prevalent prior to the NDIS. And I think first ministers and the prime minister really agreed back in 2023 that it would be good to start building those services up again. A lot of them withered away with the advent of the NDIS. We think it's really necessary to have these community level supports put back in place. It's interesting because I think parents of really young children won't remember those days. I of course do, but I know that a lot of families won't remember that and they've been in this system where they have had a fair bit of autonomy as to to how they manage their children during these years.
NR: Is the point of thriving kids is the hope of thriving kids that some of those support systems take away some of that pressure off families trying to navigate that system?
JM: Exactly. I was actually talking with a parent this morning uh who said in the age of the internet the problem isn't an absence of information. There's heaps of information. The problem is an absence of good information. And that is one of the gaps that we would seek to fill. I've had the chance of visiting quite a lot of service centers that look like this around the country. I visited a a place few months back in Jalong, a really terrific um family and child center. A place where there are pediatricians, allied health professionals, social workers, but also play-based activity, playgroups, peer support, parental support, um programs, essentially an all-in-one center. And when I spoke with the parents there about how they experienced that, they spoke about how comforting it was to have a wraparound service where they're engaging with other parents and they were learning in really practical ways how best to support their children. I think that that is something that is worth striving for and we have states and territories saying that they agree and that they're willing to make investments in these services. So we've actually got a better ecosystem of support additional to the NDIS. I think the one thing I do want to say to your listeners is that we recognize that for some children they will have significant and permanent disability. And the NDIS will always be there for people with significant and permanent disability. That's true for children. It's true for adults. But for families who are parenting children with low to moderate support needs, we really think there is a better way to get uh really good services to those families in a way that actually is more suited to the needs of those kids and their parents. That that provides um two different ways of looking at it there.
NR: I think parents of children with profound and severe disabilities will take great comfort from understanding the NDIS is not going away from for for them. Um, and I think families with children with milder, it's a tricky word I know, but milder presentations may really enjoy that wraparound service that you talk about, which is really convenient and it's delivered in a place where they are in a place where the child is comfortable and the family is is local. Is there going to be a mechanism that is able to look at the children in thriving kids who maybe have landed in that system but actually it's not really meeting their needs and they might need something more. Is there going to be an avenue for those children to be able to come back into the NDIS if that looks like what they need?
JM: When we said about designing the system, Minister Butler asked Professor Oberclaid to co-chair a task force with him and they've come up with a service model and it's really got four limbs to it. I mean, the first is just having really good information. The second is having multiple pathways in natural settings for uh children's needs to be flagged and identified and so that appropriate referrals can take place. That's the three-year check. uh not just the three-year check. It's about making sure that children, whether they are attending a maternal child health facility or a preschool or a GP, are actually interacting with professionals who are in a position to notice if they might have some additional needs and have the knowledge to refer them to the right place. So, it's that referral pathway and making sure we've got strong pathways for families and kids. Um the third element was support for parents because all of the advice is that kids really thrive when their parents are in a position to support them and have the confidence to do so. You know, parents are the first teachers. They're great uh influences in their children's lives. We want them to confidently approach that with good information and skills. But the fourth is that sometimes families will need targeted supports. And there some of the supports that I think your listeners will be familiar with and are interested in some of those allied health supports that have been so important for kids.
NR: Yeah. So another interesting thing here that you're talking about is you're mentioning the states. So this is what's what's kind of interesting for for families who have been had experience in the NDIS. That's very much sits under the purview of the federal government. But Thriving Kids um who owns Thriving Kids? Are you going to be the boss of Thriving Kids or is this really going to become a state's responsibility?
NR: Well, it's a shared enterprise um just like the NDIS is actually uh the NDIS is a shared governance model between us and the states and territories. Thriving kids has been a really quite quite long discussion now with the states and territories about how best to stand this up. The Commonwealth has agreed to put in $2 billion. The states have agreed collectively to put in $2 billion. the bulk of the delivery will now be done by the states and territories. They said we'd like to do the targeted supports. We'd like to do a lot of this work around uh early early identification of children with additional needs. We'd like to integrate that into many of the service systems that we've already got in place. And so they'll be doing that work to stand up uh to augment existing services and in some instance stand up new ones. um will continue to play a role though. We were uh obviously um commissioned the work from Professor Oberklaid that established the national model that will be the basis of design for all of the systems in each of the states and territories. We'll also take um responsibility for some of those national level information products so parents who are looking for information have easy access to something that's high quality and authoritative.
NR: Yeah. Fantastic. and and meeting parents where they are. I mean, I guess it's a generation of families who often expect answers and responses to be on devices. Is is that the thinking around some of that parent support?
JM: There are lots of parents who will want digital or phone based services particularly as their first port of call. But I think one of the lessons that um are well learned from decades of people thinking about early childhood education and support is that meeting families where they naturally are can be very significant. the the buses that are in local parks uh running playgroups. Enormous opportunities to connect with families, check in on them and just see whether they are feel that they are being appropriately supported and have the information they need. uh those um early appointments with a GP when you know you for people of our generation take out your blue book and uh document how your child is progressing. That can be a really significant uh point of contact for families. Much of our thinking is about using those settings where children already learn, already play, and where parents already gather to make sure that we're accessing children who might have additional needs and directing them to the place where they can best receive support. I think the significant part of the three-year check is oftentimes for parents who remember the blue book. I don't even know if the blue book exists anymore, but um is that, you know, they would check all of those things. You know, 10 fingers, 10 toes, you know, can a child see, can a child hear, but there there hasn't been something implemented which is how is a child meeting their developmental milestones? And this feels like a lot of families would say to us over the years um we feel like we missed it or nobody told us that our child wasn't quite developing the way they were and they feel that they've lost time.
NR: Is this three year check to make sure all the grown-ups are are checking to make sure we're not missing anybody?
JM: Uh look, a couple of things. I think we are looking for more opportunities to identify children's additional needs earlier. And that's not just about a three-year check. That's about making sure that all of the people in these settings who are interacting with children have the skill and the comp and the confidence to to to flag concerns and to make appropriate referrals. Minister Butler's been talked a lot about what we might do with GPS. GPS are, you know, trusted source of advice for so many families. I think we're still thinking through exactly what that delivery model could look like. uh but can see that there's a really clear role for health practitioners in addition to all of those other places where we see kids uh bumping up against early childhood educators, playgroups, or even just in those very early interactions with nursing in in those early years of a of a baby's life. So, I can think some families are likely to ask, um, okay, how's that going to work in my local child care or my local school or with my local GP? Underpinning this, there must be an awful lot of training that's going to have to go into helping upskill the community who who may be not there yet.
NR: It sounds to me like Thriving Kids isn't going to start on the 1st of October and we cut a ribbon and everyone walks away. This feels like a process that's going to take time.
JM: I think that's right. But I would say this, we have a really skilled workforce across multiple professions. One of the things about the NDIS is that of course it's exposed many allied health professionals to this part of their practice and we've got lots of people working in allied health who are now very familiar with disability and how to provide supports. We've got an increasingly skilled uh early childhood education workforce as a consequence of the investments that our government and previous governments have made in early childhood education. Um and we've of course got a primary health workforce that we're continuing to make really significant investments in as a government. So we are attentive in the general to the workforce that sits around children and families. I think the the opportunity for us now is to make sure that those work forces are really alive to some of these very particular issues that confront children and their families who might have additional needs. And that's the that's the piece that we'll be thinking about really carefully as a commonwealth but also with the states and territories in the coming years. And I guess different states, you know, there's not going to be necessarily national consistency. Different states will do it differently. Some states may have a bit of a head start on this.
NR: One of the areas that I think families worry the most about is schools. That seems to be the thing we're hearing more is people are worried that their local school isn't going to be ready for this or to implement that. Is this is that going to be hard? I mean, when where all of a sudden, you know, the six different education systems or in the territories, I mean, how how are you looking is there an area that you think is going to be a bigger challenge? schools feels like a big one.
JM: Under the current arrangements, parents of children with disability have an expectation that schools will be inclusive. So that's a kind of baseline expectation and we are seeing some really encouraging things. You know, we've got increasingly schools taking an interest in how to accommodate uh neurodiversity within their school system. practical interventions such as supporting stmming or fidget toys or establishing quiet spaces. We do see schools starting to implement arrangements that actually are supportive of inclusion for neurodyiverse children. The precise arrangements about how school systems will implement thriving kids will be a matter for states and territories. I think they'll be thinking carefully about the right balance in their own jurisdiction between all of those delivery pathways whether they are uh community health, preschool, early learning or school itself. And I think it'll be states and territories who work through exactly what that delivery pathway looks like.
NR: Given that the new thriving kids is diagnostic agnostic, meaning you don't need a diagnosis. if it's looking at children who are developing differently feels like that's going to be a lot of kids. Uh is is that a concern for for the state governments and and the federal government that my goodness this could be bigger than Ben her?
JM: I think that Minister Butler on a number of occasions has talked about the fact that yes, there is likely to be latent demand. um not every family has sought a diagnosis and not every family has sought access to the NDIS. Um and so we I think acknowledge that it's whilst the cohort we're initially thinking about are those children with low to moderate support needs that would currently seek access to the NDIS, it's quite possible that there's a larger group of people. Um there's an opportunity for evaluation within the program. I think first ministers were really keen to have an evaluation baked in so that we could take a look at it in a few years time, see what's worked, see where we need to make changes. Any good government program has a process of improvement and evaluation built into it. And I think first ministers have been really careful in setting this up in exactly that way. Okay. Another big one that comes up for us is families say, "What happens when my child turns nine?" like what happens when thriving kids finishes? I think the important thing for parents to know is that if your child has a permanent and significant disability, the NDIS will always be available. And so for some children, NDIS access will be really significant in their in their young lives. Um we will continue to think about how best to support children uh and their learning and development needs. States and territories obviously already have obligations to accommodate children within the school system. I think we'll keep thinking about how best to deliver on this. Um but for the moment our focus really is on that early age group and the reason is because of the significance of early intervention.
NR: The use of the labels mild, moderate, profound. Some people are going to struggle with that. But the main question they're going to to ask is who's going to decide if my child is mild or moderate and is going to be in thriving kids or who will they decide if they're going to be in the NDIS?
JM: I think the first and most important point is that we want kids to get access to supports quickly u irrespective of their current diagnosis and irrespective of what any prospective diagnosis might reveal. At some point in a child's journey through thriving kids, a professional may say to a parent, you may wish to consider obtaining a diagnosis. You may wish to consider pursuing additional supports, including potentially through the NDIS. But the most important thing is engaging early with thriving kids, seeking out some supports, uh, and then getting on that journey to providing good support for families, parents, and kids all in the one bundle. So start something. If we need to escalate it to more supports, we can get there.
NR: But it's making sure there's a good baseline program for kids to just get started as quick as possible.
JM: That's exactly right. Parents who maybe have an arrangement with a speechy or a behavioral therapist or an occupational therapist now, so they have services in place who whose children are in that younger age group. They're kind of asking us, they're a bit concerned, does that mean I lose access to that speechy or I can't use that OT anymore? What will it mean for families currently in the NDIS? So, Minister Butler's been really clear. If a child is on the NDIS at the moment, they'll stay on the NDIS subject to the usual reassessments.
NR: When you say subject to the usual reassessments, I think it's important to unpack that a little bit. Reassessments have always occurred, right? This is not something that's new.
JM: Yeah, that's exactly right. And uh reassessments have always been part of the NDIS and they respond to the fact that in many cases early intervention can reduce the need for continuing supports. And so once a child has been in receipt of support for a while, it's sensible and practical to assess whether or not that need is continuing or whether those those early support needs have been addressed and the child can then proceed back into uh a mainstream environment. thriving kids, the devil is going to be in the detail. It is going to be in the roll out. It's um it's really complex and early intervention is a is a much contested area of um science and there are so many aspects to it.
NR: So I I take your positivity with um will be where children are living and learning and and it's supporting families where they are and in their community. Um, it sounds idyllic, like it sounds wonderful if all of your early intervention needs are near you, they're funded, and your child's getting exactly the kind of services that they need. Um, is it is is that is that too much to hope for or are we moving towards a system that we know what good could look like and and it's going to take a bit of time to get there?
JM: I think we should acknowledge that it's a different delivery model to the NDIS. It's a referral into a program that will be run by a state or a territory. And so it's quite different to gaining access to and then managing an individual package. That'll be different to what some parents have experienced. But as I said earlier, for children who are already on the NDIS, they remain on the NDIS subject to those reassessments. States and territories will work through exactly the kinds of service systems that are in place um in each local community.
NR: What do you think that families with autistic children should should they feel confident about this? Because I think there's a lot of worry, but I think the worry comes from newness. This is new. We don't know what it looks like yet. We don't know what the rules are. So, we want to dispel some of that nervousness if we can. What should families be confident about?
JM: The government is really approaching this with a desire to provide support to families and the right kind of support. And in developing the program, we talked to parents, we talked to experts, we talked to people with disability, and we gathered the best information we could about the kind of program that would actually best respondse to the needs of children with low to moderate support needs. That's really been the foundation of all of the things that we've been working on. It starts with the independent review of the NDIS and then rolls through to some of the work that the government's more recently progressed. We really want families to be well supported in a way that responds to the evidence and we're really confident that we're going to be able to work with the states and territories to stand that up.
[Image description: A screenshot of Minister for the NDIS Jenny McAllister speaking to Autism Awareness Australia]
