NARELLE GRAHAM, HOST: The Federal Government, as you’ve been hearing, wants to divert children with developmental delay and mild to moderate autism from the NDIS to a new program called Thriving Kids to roll out from July of next year and you’ve heard the figures on this today. The NDIS costs $52 billion a year and that could double in 10 years. Mark Butler is the Federal Minister for Health. Mark Butler, good afternoon.
MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: Hi Narelle.
GRAHAM: Minister, you’re aware of the concerns. Why the need to divert some children away from the NDIS?
BUTLER: Remember the NDIS was set up to support Australians with permanent and significant disability so we want to come back to that cornerstone definition for the NDIS. What’s happened though over the past many years is that tens and tens of thousands of children with mild to moderate needs, either developmental delay or mild to moderate symptoms of autism, have ended up on the NDIS as well, largely because it’s been the only port in a storm for parents. A lot of the mainstream, broad-based systems that were in place, in some cases for many, many years before the NDIS was set up, were largely withdrawn or dismantled in order to fund that disability scheme. What we’ve been told now for some years is that that’s just not been the right fit. It’s putting a lot of pressure on the NDIS itself but more importantly, it’s not the right fit for parents whose kids aren’t hitting some development milestones or who might exhibiting relatively mild to moderate symptoms of autism. That’s very common. That’s a pretty broad-based, mainstream issue and I said yesterday should be supported by a broad-based, mainstream services.
GRAHAM: These kids, though, they will still have developmental delay, they’ll still have mild to moderate autism, and they’ll still need care and management. So how does diverting them from the NDIS to Thriving Kids save taxpayers money and how does it rein in the cost blowout that’s anticipated in the NDIS?
BUTLER: Reining in the cost blowout in the NDIS which I also talked about yesterday, is a broader issue, much bigger than what's happening with kids right now, introducing much more integrity and discipline into a system around pricing, around the sorts of providers who are in there. I think your listeners will be aware of far too many stories of dodgy providers and rip-off merchants in this scheme because there's not enough regulation, 15 out of every 16 providers in the NDIS are not registered. We have no sense of who they are, what their qualifications are.
GRAHAM: Isn't that on you? Isn't that on the Government?
BUTLER: Absolutely. It's on the scheme and what I outlined yesterday was our determination to do better on that. Part of bringing the disability portfolio into health and aged care, which I have responsibility for, is to learn from those older systems of aged care, veterans care, health care, how you do introduce more discipline and integrity into a scheme.
GRAHAM: Right.
BUTLER: That's a much bigger challenge than the challenge we have with kids. The challenge we have with kids is getting the right system, the right fit for parents whose kids aren't hitting those milestones.
GRAHAM: This is another funding bucket by the sounds of things. So instead of them being funded through the NDIS, it will be funded in another way. Kids will still receive some sort of care and management. Who funds Thriving Kids?
BUTLER: It would be co-funded by states and the Commonwealth, that was -
GRAHAM: So, NDIS is funded by the Commonwealth. Sorry to interrupt you, Minister. So, is that cost shifting?
BUTLER: No. The NDIS is funded jointly between the Commonwealth and the states, just as the hospital system is. We fund more of it than they do, and they fund more of the hospitals than we do, but they're both co-funded. We're in this together, which is why the premiers and the Prime Minister made a commitment in 2023 to set up this alternative system of support for children under the age of nine with relatively mild to moderate needs. Traditionally, those kids have been supported in mainstream systems. They're identified often in infant and maternal health systems in that first six, 12 or 18 months of life. If not then, then through their GPs, through community health centres, provided services in those settings, also services in early childhood and ultimately in school. This is not a blank sheet of paper we're pulling out and designing a new system from scratch. This is about rebuilding systems that were there for many years before the NDIS but have frankly just been degraded to the point where parents understandably have felt the only port they have in a storm is to get onto the NDIS and they've got to get a diagnosis for that which can take years and can cost thousands of dollars. We've got to find a better way to support them.
GRAHAM: So, are you saying that under Thriving Kids they won't need to get a diagnosis?
BUTLER: No, they'll obviously want to get some checks and they can do that through infant and maternal health systems, they can do that through their local GP. We want to bring back the three-year-old health check that we had in place years ago that was abolished probably in 2014 or 15 that GPs have been calling for because the evaluations showed they really worked. GPs or infant and maternal nurses and doctors were able to sit down with parents who are noticing some differences in the way in which their child communicates, for example, or their child's not hitting milestones. Instead of having to wait very long periods of time to get this formal diagnosis from a senior specialist, we should be getting those supports to kids and their parents as quickly as possible in as many settings as possible where parents are familiar going to.
GRAHAM: And we'll start- we’ll take a couple of calls from people. Lou is saying, it seems to take the Government of today forever to get this issue sorted. However, do they realise our standard of living might be a reason? Thank you. And Chris says, re Thriving Kids, high-functioning children with autism often have high needs. Providing therapy is expensive. The new service must not reduce services to these high need kids. Can you guarantee for people like Chris, Minister Mark Butler, that it won't reduce services to kids who need it?
BUTLER: What I can guarantee is that this system will be designed by the best possible people and will be robust and give parents and their children the support that they need. What I did say, frankly, yesterday is that the NDIS I think, has been providing levels of therapy that aren't supported by the evidence. In Medicare and other systems, to qualify for funding particular types of therapy, you have to go through a pretty robust process to show that therapy is going to make a real difference. What we find is that children with relatively moderate needs in the NDIS might be getting, on average, over 70 therapy sessions a year. I'm not aware of any evidence that supports that extent of therapy in such a broad-based way. We also know it's highly individualised. School principals are reporting literally dozens of therapists turning up to their school, asking for a room to provide one-on-one therapy to children. Surely we can find a more coordinated, evidence-based way to provide that support to kids.
GRAHAM: Let's go to Jared, who's in Flagstaff Hill. Hello, Jared, what's your situation?
CALLER JARED: Hi, Narelle. Look, I have a 12-year-old who was diagnosed with autism several years ago, and I have a five-year-old who has developmental delays and has been on the NDIS and he has funding for that. This week has been particularly fun with Book Week, all the dress-ups. Both boys were sent home from kindy and school because they had overwhelmed due to all the different things. The schools couldn't deal with it, so they were sent home. So, if you're talking here about changing the supports or pushing the supports into schools, they're saying, the schools are telling me, we can't do it, and they're sending us home. So yes, both boys have speech therapy. The younger one also has coordination therapy and a few other things. And the schools are not willing, well, sometimes, sometimes they are, but this week, it was too much for them and they sent them home.
GRAHAM: Jared, thank you. Mark Butler.
BUTLER: Jared, I'm sorry you had that experience this week. That sounds like a terrible experience, and I'm glad you feel like your kids are getting good support from their Allied Health providers, speeches and providers like that. We want that to continue. Obviously, that would be a core part of our Thriving Kids program, and frankly, it was before the NDIS. Speech pathologists, occupational therapists, psychologists were always important providers of services to help kids thrive in those early years.
GRAHAM: So, would, and just on the surface of it, I understand that a diagnosis would need to take place, but if a child is able to attend school, would that put them in the category of being mild to moderately autistic?
BUTLER: Look, I don't want to get into that clinical definition. I'm not a doctor, Narelle -
GRAHAM: So, who’s going to decide?
BUTLER: Obviously, we've got to be very careful about these questions. I mean, clinicians will be deciding these questions, and we've got to work through that over the course of the coming period as well. I want to reaffirm that the children on the NDIS right now will remain on the NDIS subject to all of the usual arrangements on the scheme. Children will be able to enter the NDIS over the coming period. This new system, I don't expect to be fully operational until mid-2027, and until then, children on the NDIS now or entering the NDIS will be subject to those usual arrangements. I just want to give a really strong reassurance. There is no way I'm going to leave parents and their children high and dry or leave a gap between the two stools.
GRAHAM: I have a texter asking, should there be a pause on NDIS reassessments until real alternatives are in place?
BUTLER: Reassessments have been a part of the scheme since it was introduced. If you are coming through the intervention stream into the NDIS, it's been a very common feature to check how you're going or how your child is going. And if, for example, their developmental delay had largely been resolved, then they would be released from the NDIS into more mainstream supports. We're not proposing to change that. There's expert advice that those reassessments, for young children in particular, should happen every one or two years to see how the child is going. And I don't have any plans to change what is essentially an operational part of the NDIS.
GRAHAM: Let's go to Nicole, who is from Flinders University and has called in. Nicole, hello.
CALLER NICOLE: Hi. So, I'm a student at Flinders.
GRAHAM: Okay.
CALLER NICOLE: I'm a student at Flinders University, I’m studying developmental education, and I am also part of the Australian Neurodivergent Parents Association and the Regional Autistic Engagement Network.
GRAHAM: And what did you want to say, Nicole?
CALLER NICOLE: I just have a couple of questions for the Minister because it seems like from the discussions that I've been having with community members as well as various peak bodies that it doesn't seem like there’s been any consultation, and so I'm wondering what consultation has occurred for him to determine that this is the most appropriate action to be taking?
GRAHAM: Nicole, that's an excellent question because, Minister Mark Butler, you said at the National Press Club yesterday you doubt it's what most parents wanted or expected, that is to have their kids on NDIS and receiving assistance that way. Did you ask them?
BUTLER: This really started with a review of the NDIS that I'm sure Nicole's aware of back in 2022 and 2023 that National Cabinet, the premiers and the Prime Minister, received and broadly accepted at the end of 2023. And one of the recommendations there was to build an alternative system of supports for children under the age of nine with mild to moderate levels of developmental delay or autism. That's not a new concept. We've been working on it for 18 months. Over the course of 2024, consultations occurred with, I can't remember the number exactly, but somewhere between 3,000 and 4,000 people involved. This has been a pretty developed conversation.
But what I announced yesterday was very much the broad parameters of what I'm proposing to introduce. There's a lot of work to do to design that program. I said yesterday that would be a process of co-design, which we see commonly in the disability space and in health. And over the course of the coming months, we'll be working with the community, obviously with state governments who are an important partner here, with parents and others, to make sure we get this design right. I want to start rolling it out from the middle of next year, and as I said, see it operational in 2027. There's a lot of work to do, and of course, it will be done on a very consultative basis.
GRAHAM: That is a short timeframe. You do have a problem, and you've already said that during this interview, Mark Butler, that with some NDIS providers rorting the system. Is it easier to run checks and balances by breaking up the NDIS into different- like what is happening here, with some people who are currently serviced by it now moving to a different stream so they'll be under Thriving Kids? And is this the start of more people being diverted from NDIS?
BUTLER: No, it's not. No, it’s not. I think going back to the earlier point that I made in my interview, the design of the program or the NDIS scheme from its start was very clear. It was intended for people with permanent and profound or significant disability and broadly -
GRAHAM: And just to kick it along, you're saying that this doesn’t, the NDIS was not ever going to be the right spot for these children with mild to moderate autism or developmental delay. Let's go back to the fixing the loopholes in the NDIS system.
BUTLER: That’s right.
GRAHAM: So, some providers are rorting the system. How do you deal with that?
BUTLER: Really three big changes. We need more of a crackdown on fraud and non-compliance. We started that over the last little while. Bill Shorten started that. The Audit Office had said previously there were no controls on fraud and non-compliance in the NDIS. Since we've started that work, we’ve had hundreds of investigations, many dozens of search warrants and prosecutions started as well. But we've got to do more on that because, still, your listeners will be aware of a drumbeat of these stories. We have to register the providers. As I said, I think 15 out of every 16 NDIS service providers are unregistered. We don't know who they are, what their qualifications are, what their background is.
GRAHAM: How do they get funding if they're not registered?
BUTLER: Because the funding goes through the participant. This is quite unique. You don't see that in aged care or veterans care or healthcare.
GRAHAM: No, you don’t.
BUTLER: I said yesterday, you've got to have a robust system of registration. And the last thing, we've got to get pricing discipline in the system. We see that in aged care. We see it in hospitals. We need much more discipline about what prices are charged in the scheme.
GRAHAM: Katrina is in Walkerville, has a point to raise about problems with checks. Katrina, what's the issue with checks?
CALLER KATRINA: What I was going to say was the Minister mentioned the three-year-old GP checks with kids. So for a lot of kids, that's actually a little bit late because if we're looking at early intervention, some of these kids need intervention from the age of about 12 months, particularly if they're not communicating, if they've got behavioural challenges. And also your average GP, I don't think, is equipped to be able to actually make an assessment about a child's development. That's why we have specialists who do assessments for autism and assessments for- you need actually quite a complex battery of tests to work out whether a child has a developmental delay. So, GPs aren't equipped to do that.
GRAHAM: Minister Mark Butler -
BUTLER: I strongly agree strongly agree with that. Checks need to happen well before three. We need to leverage the infant and maternal health systems to do more of them. South Australia is doing a lot of that work as a result of the Gillard Royal Commission that Malinauskas Government had, but need to see more of that across the country. And I talked about a program in yesterday's speech called Inklings which started in WA but is starting to roll out here that really leverages those checks at six or twelve months of age, particularly to support parents if their child or their baby really is showing some differences in how they communicate. I couldn't agree more that the checks to start early, but three years of age is also -
GRAHAM: But not with the GP, with maternal child health instead?
BUTLER: Obviously, yeah, because they're doing those sorts of checks anyway. But three years of age is also an important time to see how a kid is going. Not just in terms of some of the issues we're talking about, a whole range of other physical health issues are important to check a child on at about that age before they start moving into preschool and then school.
GRAHAM: Mark Butler, the Minister for Health, Federal Minister for Health. Let's quickly go to Patrick Marr, who is the Strategy Director at Music Culture Adelaide. Patrick has autism and wants to weigh in as someone who is impacted. Patrick, what did you want to say?
CALLER PATRICK: Thanks, Deb. Firstly, I don't really want to talk about the policy. I want to talk about some of the language that we're using here and we're talking about, We keep saying people with autism, people with mild autism, people with, that's not how it works. We are autistic people. The levels in the diagnosis, ASD level 1, level 2, level 3, they're not a delineator of mild, moderate, severe. They're a delineator of how much support, what is the quantity of support and the complexity of support that we would require so that we can participate in neurotypical society. So I think that's something that is really missing from here. And the Minister talks about, let's go back to the old way, the way that we had these checks and things we had in the past. Well, the reality is 75 per cent of autistic people don't finish year 12. So I don't know what we're referring to when we're saying, let's go back to the old way it was working. I don't think it was.
GRAHAM: Patrick, thank you. Appreciate your call this afternoon. And Minister, I want to move on to the issue that we have, that the continuing issue of ramping. And I know that Sonya and Jules were speaking with our State Health Minister, Chris Picton recently, who said much more action is needed from the Aged Care Minister. So, if you can pop on this hat, we'll just remind people of what Chris Picton said.
[Excerpt]
CHRIS PICTON, SOUTH AUSTRALIAN HEALTH MINISTER: I don't think that anybody could have possibly considered that this issue of federal aged care was going to become such a problem across the country. As we are opening up hundreds of extra beds, they are all getting taken up with aged care residents. And that's a big problem. It's the most expensive way of looking after somebody, it deprives another patient of the bed that they need. The Federal Government have on the table about $1 billion worth for capital investing into building new aged care beds. How much of that is available for Adelaide aged care providers to bid for to build? $0. And it's leading to an investment drought, it's leading to our aged care providers not building additional capacity. And that's putting more pressure on hospital and more pressure on our community.
[End of Excerpt]
GRAHAM: So what's the fix? We know the issue is that people are in hospital, they don't have an aged care place to go to.
BUTLER: Just to what Chris Picton said there, the billion dollars of capital is available, particularly for rural and remote areas where there frankly aren't a lot of providers out there building nursing homes, where often those facilities are more expensive to build because of the tyranny of distance. I just want to correct that point that Chris Picton made. But I do agree with Chris that we need to see more aged care beds built, not just here in Adelaide, but right across the country. And we did, we could have predicted this. what I complained about is that over the last decade before we came to government, nothing happened to reform the aged care sector and prepare it for the increase in demand that we're seeing right now with the ageing of the baby boomer generation. There was an investment drought, no one was building. We changed the laws at the end of last year in response to a request from the aged care provider sector to make it investable again. We just need them to get on and build. We've changed the laws. They get much more money now to build a new aged care facility, we just need them to get on and do it.
GRAHAM: So why isn't the South Australian aged care sector able to bid for federal funding to build capacity?
BUTLER: They can outside of the major cities. That capital program is for essentially areas of market failure. It's very expensive and there are no providers flocking to rural South Australia or the Northern Territory or rural Western Australia to build aged care facilities. It's hard to make a buck out there building them, which is why the Commonwealth steps in and helps underpin or underwrite the cost of building. We've designed these laws, though, that was passed in the Federal Parliament just before Christmas last year, so that private providers, church providers, are able to start building facilities in Adelaide and every other major city in the country. We did what they asked us to do. They said that would allow the banks to lend, that would allow their boards to approve them going ahead building new facilities. We just need them now to get on and do it.
GRAHAM: So, you're saying the Federal Government has put the money on the table, but it's only available to outside of Adelaide. Couldn't there then be more money put into a different scheme so that more aged care could be built in Adelaide and therefore have that impact on ramping?
BUTLER: No, we made the changes to the law that now make it investable to build facilities in Adelaide. The providers said that, they've just got to get on and start doing that. They’ve got -
GRAHAM: Can they even resource aged care facilities in regional areas?
BUTLER: With staff? Is that what you’re asking?
GRAHAM: Yeah. It's really difficult.
BUTLER: Yes. It's always challenging just to staff services of any type out in rural Australia, but it's much easier now because of what we've done to increase their wages. The increase in aged care wages, including aged care nurse wages, has transformed the ability of aged care providers to recruit and retain staff. There's no question about that, including in rural South Australia. But we don't have enough beds, because not enough was done over the last decade to prepare the sector for that wave of baby boomers that is starting to hit. I know that is putting pressure on the hospital system, which is why we're doing as much as we can to support the funding of the hospital system, including here in South Australia where we've increased funding this year by 15 per cent. The largest ever increase from Commonwealth to the state.
GRAHAM: And what about the issue of home care packages, home aged care packages? They're still not rolling out quickly enough for those who need it. Is there money for that to grow?
BUTLER: Yeah, there is, and we'll see a big increase in those packages start to take effect in only some weeks with the introduction of the new scheme that again we passed to Parliament.
GRAHAM: Some weeks? Like, by the end of September?
BUTLER: 1st of November.
GRAHAM: 1st of November. Okay.
BUTLER: On the 1st of November. We're rolling out new packages all the time. We roll out new packages every budget or budget update that we have. They're constantly entering the system. They still are this month. But there's a very big structural increase in the number of packages that will start when the new scheme takes effect on the 1st of November this year. That will add to what is already a growing market.
GRAHAM: Let's hope that makes a difference. Mark Butler, Minister for the NDIS and Minister for Aged Care, thank you.
BUTLER: Thanks, Narelle.