TOM CONNELL, HOST: Thank you, Minister. So, you’ve really approached head on there, I guess, the biggest sustainability issue or budget increase that a lot of experts talk about, people on the scheme with ADHD or autism. You spoke around a low or mid-level in terms of where they’re best suited not with the NDIS. A lot of experts speak about getting away from diagnosis and addressing it in terms of functional impairment. Well, what will you rely on? Is it just diagnosis? Is it functional impairment? Is it a combination?
MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: The scheme more broadly is moving more to the question of functional impairment. That is the way assessments will work into the future. And there’s no question that there will be significant numbers of people with autism still on the scheme because they have a level of autism that is permanently and significantly disabling, and that is as it should be. The concern I’ve raised, and is the subject of substantial conversation in the community, is the degree to which young children with more mild and moderate levels of developmental delay or autism are on a scheme, frankly, because there’s nothing else – a scheme set up for permanent, significant disability. That unintended consequence of the establishment of the NDIS is what I’ve said today we intend to deal with.
But I come back to the point, the whole reason for both of those two challenges I’ve talked about, is to secure the future of this scheme. We should celebrate this scheme as probably the most significant example of social progress in the last 30 years. It has transformed the lives of people living with permanent, significant disability. And I feel very deeply the responsibility to do everything I can to secure its future for the long term.
CONNELL: And just to clarify, you spoke about people if they qualify for the scheme, they’ll stay on it as a default. But for people for whom Thriving Kids is a better fit, will there be a measure to push them, force them, suggest to them that they go into Thriving Kids? How will that work?
BUTLER: Parents ultimately make up their minds when there are alternative systems. I’m absolutely convinced that a mainstream, broad-based system of supports for Thriving Kids, to support Thriving Kids, is the best choice for Australia’s children and their parents with the level of developmental delay and autism I’m talking about. Over that sort of transition period while we’re building that system, parents will make a choice if there are two options available to them. But from 1 July 2027, there will be access and eligibility changes put in place that do steer those parents and their children towards the system of Thriving Kids. That will be entirely appropriate.
JOURNALIST: Thank you, Minister, for your address. Since, I suppose, so much of the discussion here about the NDIS is comparing initial forecasts to where we've ended up a dozen years later, with this new system, do you have an idea of how many children you anticipate will be using it either at the beginning or when it's actualised? And similarly, how much that system would cost? You mentioned a $2 billion starting Commonwealth contribution shared by the states. So what is a reasonable Commonwealth contribution over the long term to this system, given that the Commonwealth will continue to fund the NDIS? And just additionally, if you wouldn't mind, you mentioned, obviously, the significantly larger take-up among children in regional parts of New South Wales like the Hunter. That's mirrored in Victoria, South Australia and Queensland. To what extent is workforce and resourcing going to be a challenge when it comes to rolling this system out to address that level of need across the country equally?
BUTLER: First of all, I made it clear that quite a bit of design work needs to happen between states and the Commonwealth, in partnership with the sector and with parents themselves. We've obviously, through the agency, been doing work to model the numbers of children with more mild to moderate levels of developmental delay and autism. States are keen to understand that as much as we are because we do have to work out financing, the scheme design and things like that, and that work is still underway. Precise numbers, precise design of the program is something I've indicated we do need to start work on with states, because this work has drifted.
But I also want to reinforce my sense of the urgency of this. Children with mild to moderate levels of developmental delay and autism should not, in my view, be on a scheme set up for permanent disability. It is not the right fit. But I recognise it is the only port available to so many parents, tens and tens of thousands of parents. We should treat as a matter of urgency the need to provide them with a more suitable system of broad-based mainstream support. Yes, there's more work to do, but it is urgent work. It has drifted for the last couple of years, and we need to start to deliver it.
To your question, though, about regional impacts, there are a couple of reasons why you see different numbers in different parts of Australia. As I said, some parts of Australia like the Hunter or South Australia more broadly were early launch sites or pilot sites for the NDIS in relation to children, so they're a little bit further down the road than some other parts of the country. That reinforces the need for action, because looking at where those parts of the country are up to gives you a sense of where the rest of the country is likely to head if we don't make serious change here. But like so many things in the health, aged care, veterans care, disability care sector, there are challenges getting workforce out into the region. That’s why as much as possible leveraging mainstream broad-based systems like primary care, infant and maternal health systems that states run, schools, early childhood education and care is going to provide a much better system of access for parents including in regional Australia.
JOURNALIST: Hi, Minister. Thanks for your time. I also wanted to ask about the Thriving Kids program. Is this essentially a rebrand of foundational supports? And given you haven't been able to get the states on board so far, what makes you confident that you'll be able to get them on board with this?
BUTLER: I wouldn't describe it as a rebranding. Foundational supports is a generic term, I think you take from the Bonyhady and Paul review, to describe a system of supports that would be targeted at quite different cohorts. Children naught to nine is our first piece of work, but adults with quite severe and complex mental illness is another cohort identified in that review. It's a generic term. It’s appropriate that we refocus that principle into something that speaks to parents and speaks to the sector, and that's why we're using different terminology. We are focused on helping those kids thrive. That's what we should be focused on.
As to where states are at, I've heard a couple of pieces of feedback from states. The first is that states felt that they shouldn't have to take full responsibility for leading this program, which is why I've indicated today we want to lead. We want to hold the pen on this with them. We think that it's far preferable to have a single, nationally consistent program for Thriving Kids rather than eight different programs developed at state and territory level. That's certainly been the feedback, not just from states, but I've also got from the community more broadly. It doesn't make sense in 2025 not to have that single national consistency. Also, feedback I received from states was that they were concerned that we hadn't committed funding on an ongoing basis beyond the five years that were talked about at the National Cabinet meeting in 2023. Today, I make that commitment to ongoing funding, not just for that fixed period of time.
JOURNALIST: WA Premier Roger Cook has slammed the Federal Government in recent days. He's had a series of damning reports into state hospitals. He's claiming that a lack of federal aged care funding is impacting WA hospitals through bed blockage. Why did the Federal Government reject WA Labor's request to match its $100 million election promise for capital works on new residential aged care homes, especially given new modelling shown that there will be a gap of 2800 beds by 2029 and up to 30 residential aged care homes will be needed to be constructed?
BUTLER: We've done a range of things to relieve pressure on state hospitals, including in relation to aged care. We passed legislation through the Parliament at the end of the last year that frankly delivered once-in-a-generation aged care reform. And right at the heart of that was making this sector, the residential aged care sector, investable again. We'd been told by provider after provider, and also by financiers and banks, that the sector simply wasn't investable.
Changes we need to retention payments in the sector, to lifting the maximum room rate, were all focused on doing what the providers told us were necessary to unleash the capital to build the beds that we need. Particularly for that ageing generation of baby boomers who will start to hit the residential sector, on average, in the next three to five years. We have done what the sector was asking us to do.
In the meantime, this year we've increased our funding to state hospital systems by 12 per cent, the biggest increase in Commonwealth funding to hospitals you will find for many, many years. We're building Urgent Care Clinics to take pressure off Western Australian and other state hospital systems. Only this morning, we announced that expressions of interest for the next wave of Urgent Care Clinics in your great state have opened today and we hope they'll be open by the end of the year at the earliest or early next year at the latest.
We’re doing everything we can to assist hospitals in the pressure I know they're all experiencing. That includes, frankly, for the first time in many years, making the aged care sector invest those beds can be built. That's the contribution we've made top that pressure.
JOURNALIST: Minister, two things can be true. You can deliver record funding and the issues can still remain. The Premier is bringing a delegation to Canberra next week. Will you meet with him? What will you say to him?
BUTLER: Of course I'll meet with him.
JOURNALIST: What will you say to Roger Cook about these issues?
BUTLER: I'm not going to spoil Roger's surprise by previewing it with you, with the greatest of respect.
JOURNALIST: Thank you, Minister, for your time. A Family Court judge who presided over the 2013 Re Devin case on allowing parents to prescribe their children puberty blocking medication without core intervention, recently said, the outcome would have been different if the case were decided today because of all kinds of new evidence that's going into the lasting impacts of this medication. In light with this, along with the Re Devin judgement this year that criticises some elements of the affirming care treatment guidelines, and of course the UK, Finland, Norway, Sweden and Denmark restricting the access of these blockers - I wanted to ask your view on this today. Are you looking at any kinds of restrictions, particularly until something like the NHMRC review is complete?
BUTLER: We considered this as jurisdictions in different ways quite deeply over the course of the summer. I announced in January that I'd asked the NHMRC to undertake a review of clinical guidelines around what’s described as gender affirming care for children and teenagers.
The NHMRC has a statutory charter to do that work, it's done it for decades. Its capacity to do that is unparalleled. And frankly, given the level of debate and contest around this, I thought it was appropriate that the most esteemed body in this area in the country do that work, rather than have these debates play out in different ways in different jurisdictions.
I've also asked the NHMRC to expedite some advice about the use of puberty blockers, obviously for teenagers because that is the age they take effect or even a little earlier than adolescence and that advice will be provided in the middle of next year.
In the meantime, these services are all provided by state governments across the country. They are the ones who fund the services, employ the clinicians, make these decisions, ultimately. Queensland has taken a decision about this that is different to some other states - that is their right and they're accountable to communities for those decisions.
My job, as I see it as the Federal Health Minister, is to ensure those states and those services, but most importantly, parents and their children have access to the most up-to-date and most expert clinical advice, and that's what they'll get from the NHMRC.
JOURNALIST: So to be clear, it's up to the states and you won't intervene until the middle of next year at least as you say?
BUTLER: I've done what I think is appropriate from the Commonwealth, which is to ask the NHMRC to ensure states are acting on the best possible advice. The broad guidelines will take a little longer, but I recognise there is a little bit more urgency for clear advice about the use of puberty blockers, which is why that will come in the middle of next year.
JOURNALIST: Minister, I'd like to talk to you a little bit about evidence-based decision-making, which you talked about with the NDIS, and turn your attention to an older scheme, the PBS, where evidence-based decision-making has been done for 30 years. And the result of that, as you've said is, of course, we drive a very hard bargain for medicines listed on the PBS. The proportion of our GDP going on innovative medicines for the PBS is 0.21 per cent compared to 0.4 per cent in Germany, 0.5 per cent in Italy, and 0.78 per cent in the US. But of course, that comes at a cost and the cost is that we're now seeing only one in four new medicines launched in Australia. And on top of that, those medicines are not funded on the PBS for another two years after they land in Australia.
And then of course, we have the proportion of funding going to PBS is also innovative medicines means that has flat-lined. The investment in the innovative medicines has flat-lined over the last five years, and we're also seeing the proportion of money that people are paying for non-PBS medicines has doubled.
What the evidence suggests is that we are actually privatising the PBS by stealth. Is this your intention? And if not, what are you going do to reverse that trend?
BUTLER: The PBS is deeply important to a Labor Government and it’s deeply important to Australia. It delivers Australia a terrific medicines system and has for close to eight decades now. Delivering Australians access to the best medicines available from around the world at affordable prices -, prices that we want to make even more affordable. We have legislation in the Parliament now to reduce that co-payment to $25 from 1 January.
But I do recognise that the PBS is under strain. That is why we continued with a commitment the previous government made to a once-in-a-generation review of our health technology assessment systems, that evidence-gathering and assessment system you talk about. I've had an implementation group looking at that to provide me with more specific advice about how to sequence the implementation of that review. I actually had a look at their report over the course of the weekend and I'll be publishing that in the very near future.
I know that this system is under pressure, in part because we're lucky enough to be living in a turbocharged period of discovery where the number of new therapies coming onto the market, their complexity and, frankly, their cost in many cases is putting pressure on these sorts of assessment and reimbursement schemes. I've said on a number of occasions, updating our cherished PBS is a priority for this term of Government from my point of view as Health Minister. It delivers extraordinary outcomes for Australian patients, which become more extraordinary over time.
If I can make a plug while the meeting up the hill is taking place. New medicines, innovative medicines, are a huge driver, perhaps the most important driver for productivity in the health care system. The Productivity Commission found that last year when they looked at a different way of assessing productivity and health.
Quality-adjusted productivity measured on the basis of quality-adjusted life years, has been increasing in health by three per cent per year, one of the highest rates of productivity improvement in any health system in the OECD. I think we rank third. The big driver of that is new medicines, particularly in cancer, where productivity has been growing more likes eight to nine per cent. I want to see the opportunity, the enormous opportunity of new medicines development become part of our productivity discussion, if I can make a plug to the discussion up the hill. I recognise we do need to modernise our HTA system to ensure that, for another eight decades, Australians can enjoy one of the best medicine systems in the world, because that's what they've enjoyed over the past eight.
JOURNALIST: A quick one off that interim report. Your own department has recommended that you set up an interim fund for implementing those reforms. Will you agree to put that in MYEFO?
BUTLER: No, I'm not going to make any announcements about what we're going to do here, Megan, I don't think that will surprise you.
JOURNALIST: Thank you, Minister, for the speech. You said the current growth rate for the NDIS of 8 per cent by July next year is unsustainable in the medium and long term. With some of the original timelines proposed by the former Minister following the NDIS review's release in late 2023, do you expect to be able to bring the growth rate to four or five per cent by the end of the decade, based on the work already under way and the announcement of the Thriving Kids program? Or are there other changes yet to be announced in the coming months and years?
BUTLER: The first thing I’d say is that in addition to the 4 to 5 per cent I mentioned an inflator for ageing, which might be as high as 1 per cent. I talked about a 5 to 6 per cent being probably the range, although much more detailed modelling would need to take place about that. Ultimately, this is a decision of National Cabinet. I'm stating a position on behalf of the Commonwealth about this, but states and Commonwealth are co-stewards of this scheme. States are more exposed to cost growth in the scheme now because they signed up to increasing their cap on growth spending in the NDIS from 4 per cent to 8 per cent. This is a discussion that should happen at National Cabinet, but I do expect that we should start that process next year.
Right now, we're focused on the current target, which is getting growth to 8 per cent and the work that is underpinning that. But once that is achieved, we should not waste time in the next wave of reform. That will be well beyond the work I've talked about in relation to kids. I talked about the things we should be doing in this scheme. We've got to introduce more discipline and integrity into this scheme. The sort of discipline and integrity you see in health, aged care and veterans care, those more mature schemes. Pricing discipline, market stewardship, more providers registered and accountable for the services that they deliver to people with disability, more evidence to justify the sorts of supports that are being provided. This is the really hard but critically important reform work that will underpin that next wave of constraining growth.
But I come back to the point I made earlier. This is all about people living with a disability. This scheme has transformed their lives. But we are at a fork in the road right now, I really sincerely believe, where we have to make sure that we shake up this system and get that sort of discipline and integrity into it that will deliver maximum value for people with a disability as well as for taxpayers and secure the long-term future of this scheme.
JOURNALIST: Do you foresee that additional reform being prompted by another NDIS review in the future?
BUTLER: No, as I said in my speech, we will draw on the ideas that are there in that 2023 review from Bonyhady and Paul. Also, bringing these portfolios together gives our department, me as Minister, Jenny as Minister for the NDIS, much more capacity to compare and align systems in the NDIS with those other health and social care systems, particularly health and aged care, pricing systems, market stewardship, the sorts of evidence-based systems that give taxpayers confidence that the supports and services being delivered are actually going to make a difference for the people covered by the scheme.
CONNELL: So in terms of what really makes a difference, when you spoke about the instances of fraud, which are shocking in non-registered providers, but is one of the big elements here when you talk about pricing discipline what people or what registered suppliers are allowed to charge whether it be for an OT or a psychologist or kilometres travelled? Some if you experience the system, you're staggered at how high these numbers can be, are you going to go through line by line and say, hang on, we're allowing people to charge too much for this service? This really isn't what people need to be able to have a thriving business.
BUTLER: We will look very seriously at independent pricing in this scheme of the type that we have had in hospitals now for over a decade and have more recently developed in aged care. There is a very significant crossover in services delivered to people with disability under the NDIS and people in aged care. A very significant crossover. I can't for the life of me see any reason why there should not be pricing alignment between those services. Often, they're the same provider working in both schemes. We have workers moving between both schemes. Where there is not aligned pricing, you see distortion, you see leapfrogging, and you see a whole lot of perverse trends operate within a labour market that should be focused in a much more rational way on serving the needs of patients in health, recipients of aged care and participants in the NDIS.
JOURNALIST: Thank you for your address, Minister. You spoke about how these changes are not only an issue of budget but also of social licence. How has the focus on NDIS blowouts affected those families who are relying on this scheme? Is there a risk of further alienating already vulnerable people who need this support by the way this conversation is unfolding?
BUTLER: There is a real risk to the sustainability of the scheme itself because that is underpinned by social licence, by a sense that the broader community wants to continue putting the very substantial investment into the scheme itself. But also, it is going to ultimately, if we don't address this, start to rebound on participants themselves. They should be proud of what the disability community created through this scheme. It didn't drop out of the sky, as I said. It was the product of decades of determined, relentless advocacy by the disability community itself. I know how proud they are of the scheme that they largely built, obviously with government support and all the rest. That sense that there is a growing belief in the community that, to go back to the research I talked about, it's got too large, it's out of control, there are too many dodgy providers in it. That's going to be of more concern to participants than anyone else in the community, I'm very confident about. They more than anyone will expect a Government, Ministers like myself and Jenny, to do everything we can to get it back on track and to secure its long-term future. And that's what today's speech is all about.
JOURNALIST: Thank you. Health Minister, thanks for your speech. Earlier you described the foundational supports as a generic term. I've just looked back at a press release that was put out on 30 January 2024 under different Ministers, it's fair to point out, talking about the establishment of Foundational Supports Strategy, outlining that you'd got agreement at the National Cabinet in December to do this, and there had been an agreement on the funding split of 50/50, and also the Commonwealth giving, investing, $11.6 million. Is it fair to say that the foundational supports scheme, as originally put, is dead? This is the investing in kids now scheme that you've outlined today as the new program that the Commonwealth will take control of. And I guess, many people would wonder what happened to the $11.6 million that was set aside to do that?
BUTLER: I wouldn’t agree with that at all. What I am doing is giving shape to what was a generic commitment to deal with a broad-based, quite diverse set of challenges in the scheme. What we end up doing in relation to kids under the age of nine with mild to moderate levels of developmental delay and autism will be profoundly different to the way in which we provide supports for adults, often middle-aged adults, with severe chronic mental illness, often psychotic disorders. Those were the two cohorts identified under the generic umbrella term of foundational supports. Those are the two very specific pieces of work that all governments have.
I don't accept at all the idea that we have shifted away from the intent of the decision made by National Cabinet at the end of 2023. I do accept that that work has drifted. I do accept that today what I'm doing is indicating on behalf of the Commonwealth our intention to lean more heavily into the design of that part of the program for kids, to support kids to thrive over the course of those ages.
JOURNALIST: So, there'll be a thriving program and a foundational supports?
BUTLER: No, this is the encapsulation of foundational supports for that first cohort. National Cabinet decided that when we think about foundational supports, they wanted us to do work first of all on kids under the age of nine, and then come to that second big cohort of adults with psychosocial disability. I don't accept at all that we have shifted from the intent either of the Bonyhady and Paul review or of the decision of National Cabinet. We're giving shape to it.
JOURNALIST: Thank you for your speech here today, Health Minister. The NDIS now has more than 700,000 participants, but that's still a fraction of the estimated 5.5 million people in Australia who live with disability. You've discussed reforms relating to children in depth today, but I'm asking what would you say to an adult living with disability to help them understand why they might not meet the criteria and to assure them that there are still avenues and a pathway forward?
BUTLER: The point you make that there are significant numbers of Australians who have a level of disability out in the community was always clear. When the review work that the Productivity Commission largely led, the campaign that led to the NDIS, when all of that was being developed, it was quite clear that we were building a scheme for people with significant and permanent disability to provide them with the reasonable and necessary supports that they need. What we've seen for today's purposes, for kids under the age of nine who might have a level of disability through developmental delay or autism, is that those alternative systems that were imagined at the time that would complement that NDIS to the extent they existed, they were often defunded to find money for the NDIS. That's certainly the case in many instances for those adults with long-term psychosocial disability I talked about who aren't in the NDIS right now. A lot of the programs we were building at the time, when I was Mental Health Minister, have largely been defunded with that money being diverted back to the NDIS. That really was the reasoning behind the recommendation that Bonyhady and Paul made in their review. That's the reasoning behind the decision of National Cabinet. There will be different levels of disability that remain in broad numbers out in the community. The NDIS was for people with permanent, significant disability. It was always understood broadly what that number would be, and we've pretty much stuck to that number except, as I said, in one area and that is kids with developmental delay and autism.
JOURNALIST: Thank you, Minister. The Australian Government has recognised and taken steps to address the systemic issue of medical misogyny in the healthcare system. I wanted to put to you two key measures that we're told would go a long way to make meaningful change for women in pain. One is, will you provide greater funding for longer GP consults? And will you mandate that all government-funded medical research embed sex and gender considerations at all stages of the research project when applicable?
BUTLER: Congratulations for the award that you and your colleagues received earlier for the long piece of work you've done around medical misogyny. It's helped inform a lot of the work that we've done around women's health in particular, work that we announced before the election to provide women with more choice and more control and greater affordability for a range of supports that women need, often not because they're sick, but because they're women around their reproductive health during periods of perimenopause and menopause and such like. But that doesn't finish the job of dealing with what people increasingly recognise is some entrenched, to use your term, your paper's term, medical misogyny.
There is more to do. We recognise that. I know the NHMRC, for one, is focused on reflecting on gender and sex in research. The case is well made that for many, years, research tended to focus, and clinical trials sometimes tended to focus just on men because it was easier and cheaper just to focus on men as trial or research participants with all of the consequences that your articles and others have pointed out. We’ve got to do better than that.
On longer consults though, I will say that as part of the strengthening Medicare budget back in 2023, we did fund a Level E consult, so more than 60 minutes for GPs. We funded it at a very good rate. We didn't nickel and dime it. We made sure that it would be worth the while of the GP to do it, particularly at a bulk-billed level. The uptake of that level E consult for 60 minutes or more has been very strong. We have made an impact there, and that was in response particularly to advice from largely female GPs who do a lot of that work with longer consults, particularly for women patients who didn't feel they were being compensated or reimbursed sufficiently for that. We’re also doing that in areas like longer consults for perimenopause and menopause, for contraception and things like that. I do think we are making inroads there, but we recognise there’s more to do.
JOURNALIST: Thank you. You better incentivised shorter consults, though, when you made that funding announcement. And the NHMRC does say that it strongly encourages these sex and gender characteristics to be included in Government funded research, so why not just mandate it?
BUTLER: I haven’t got that advice from the NHMRC, that that’s something I should do. I’m happy to take that advice and consider it if it comes to me. I don’t necessarily accept the argument that we’ve incentivised shorter consults, we’ve provided significant funding for those Level E consults, and with the bulk billing incentive on top of that, you’ll find that we calibrated it so that you didn’t get that drop off in reimbursement that GPs were getting after the 45th or 46th minute that they’d seen a patient.