E&OE TRANSCRIPT

SUBJECT/S: Touring Healthy Strides; evidence-based treatment and care; NDIS funding; The Voice

ZANETA MASCARENHAS, MEMBER FOR SWAN: I acknowledge the Whadjuk people of the Noongar nation and their elders past, present and emerging. It's wonderful to be here at Healthy Strides in East Victoria Park and I would say that this is not a national leading facility, it's a world class leading facility. It's a phenomenal place where kids can live their dreams and reach their full potential. And the thing that I'd say is that it's such a special place that I really wanted to bring our federal Minister for Disability here, and that's why Bill Shorten is here today. But first I'm going to hand over to Dayna, who is the amazing CEO, to share some words.

DAYNA POOL, HEALTHY STRIDES CEO: Thank you, Zaneta. Thank you for joining us here today at the Healthy Strides Foundation. Healthy Strides was built on research. It was built on the backbone of knowing we can do better for our kids. It was built on this idea that we can always find better ways to improve outcomes, and for children, it just means they live the best life possible. It means setting them up for the greatest future they could possibly imagine to be the best versions of themselves. So, we use the latest science, the latest research, and we implement it into practice. And by doing so, we're seeing results that we've never seen before. I've been a physio for 20 years now, and even now I'm still amazed by the kind of results that we see day in, day out. Because when you follow the science and evidence and we learn from each other as researchers from all over the world, I truly believe we can get real outcomes. And we see that day in, day out with our children here.

So here at Healthy Strides, we're a team of about 18 of us. We've got physiotherapists, occupational therapists, and therapy assistants. We also have data science and software engineers because we know that the future is also in technology. And what we do here is intensive therapy, intensive therapy built over six weeks, very goal specific. We work with the families to achieve the outcomes. And another thing that we do here is we translate knowledge. So not only do we generate new knowledge and research generation, we also translate it through our podcast, research podcasts where we travel all around the world and we speak to researchers so we can all actually be aligned together. This is not a journey that we want to do by ourselves. This is something we want to do with a whole team of collaborators, of clinicians and brilliant minds of researchers. And we're so proud to be here in East Victoria Park and to be able to showcase what we do today.

BILL SHORTEN, MINISTER FOR THE NDIS AND GOVERNMENT SERVICES: Thanks, Dayna. And my goodness, she's impressive, as are all the people here. It's great to be here with Zaneta Mascarenhas and Hannah Beazley, the state and federal members for this area. I'd also like to give a shout out to Christine Simpson Stokes, who's a big supporter of looking after people with disability, who is here today. I'm the Minister for the NDIS in Australia. The NDIS is changing lives on a scale unimaginable a decade ago. Whilst there's a lot of discussion about making sure that we ensure the NDIS is sustainable for the future, let me just reassure families and people with disability that under the government the NDIS is here to stay. We want to make sure that every dollar is getting through to the people for whom the scheme was designed. But sometimes when you open the newspapers or you turn on the news, you see stories about the NDIS which are not favourable or flattering. But I just invite some of the people who knocked the NDIS to come here to Healthy Strides. This is evidence-based practice which is, as Zaneta said, not just national leading, its world leading. There are 297 precious kids here who, because of the evidence and the research, 297 kids annually, they're not being looked through the prism of cerebral palsy or a particular impairment. When they come here, they’re looked at and said, right, what can we do so these kids can have fulfilling lives? What this research does, what I see here, what we're doing with the NDIS, is we look at a person with a disability and we look at the whole person. You know, to hear people communicate when in previous generations no one would have listened. To watch kids be able to walk when in previous generations they wouldn't have had that opportunity. This centre is changing lives. The National Disability Insurance Scheme is changing lives. It's when you realise that before the NDIS there was just simply nothing. There was crisis. Before the NDIS, your next day had to be worse than your previous day in order to just to get some modest resources. We're leading in the world here, but West Australia and the Telethon Institute and the research that we're seeing practised here, this is leading in the world. But the very best thing is for champions like Nate, who have just met his lovely mother, Kelly, all of a sudden what we are saying as a nation, as a community, is when we see Nate, we see him all. And we see his right to go to school. We see their right to walk and to talk and to participate and to fulfill their goals. So, you know, politics some days are not so good and other days are better. This is a fantastic day for me and my colleagues. To meet Dayna and her team, well, that's just simply inspirational and to see the kids and their families getting the best chance in life, that is why we have an NDIS. So, I'm really just - I feel very touched to be here today and to work with such marvellous people. And from our end nationally, we'll keep working with the Telethon Institute, we'll keep working with Healthy Strides because there's 297 kids annually here whose lives are much better off because they come here. I might just perhaps invite people to take questions and Zanetta, Dayna, and myself, if there's any issues that people have.

JOURNALIST: Yeah, just in relation to the modelling that informed the cut of $56 billion sorry, billion to the NDIS, there's been an FOI request to obtain the underpinning of that modelling, but it's been refused by the Department of Social Services. Can you explain why the public can't see the reasoning behind those cuts?

SHORTEN: Oh, I don't make the decision on the FOI, but can I just say the basis of your question is, do we think the scheme is working or can we improve it? I'd invite you to talk to the families here. This is what's happening. If you want to see how we can make the scheme sustainable, we make sure that there's evidence-based therapies. The reforms which we outlined are, by the way, probably without boring you to tears. I've done about a thousand speeches on, and of course if you can be bothered, Google any of them.

What we've said in our reforms to justify the improvements to the cost growth trajectory, one is we want to move from annual plans. We've got to start thinking longer term in the scheme. It might surprise you, but if you talk to the families here, they'll tell you, a person with a lifelong disability shouldn't have to prove that they have a permanent lifelong disability every year. So, we're moving to longer default plans. That's going to save a lot of time and money. We're also going to start tracking down what I call unethical behaviour as part of our reforms. There are people who, when they hear that someone has an NDIS package, they put the price up. I think that's scandalous and immoral. So, what we want to do is start making sure that the therapies which people are getting are evidence based. Bang, that's why, you know, Dayna and her crew here are in the sweet spot.

We also want to work with other government departments and other levels of government to make sure that the NDIS isn't the only lifeboat in the ocean. Because the NDIS has being created, then it's sort of become the golden ticket. I don't blame any parent wanting to make sure their precious lovely child can get OT or occupational therapy or to get physio or speech pathology. But what we've got to do is, it takes a community to raise and support people with disabilities, so it can't just all be on the NDIS.

These are all sensible measures which will contribute to lowering the cost growth over the next four years from 14% to about 8%, and we have explained in the past how we sort of work out the billions of dollars which can be saved. But I say that all from the underpinning of this: this scheme is here to stay. It will grow every year. People with a disability shouldn't be rationed. Like, you can't help if you have a disability, so I just want to remind people that it will remain demand driven. But I think with a better administration of a government who gives a stuff about people with disability and wants to make the scheme work in the best interests of people with disability, we will not only get some of that moderated cost growth, we'll help make Nate and so many other precious kids’ lives better.

JOURNALIST: Mr. Shorten, could you walk us through how the NDIS is helping this organisation? Does it have existing funding? Will it be getting more funding?

SHORTEN: Dayna is probably well placed to talk about some of the individual support they've received, and I acknowledge that Chris Ellison, for example, and his organisation helped put the some of the capital investment in here, as has the Telethon Institute. But what we contribute nationally is that most, if not all, of the 297 kids who come here have an NDIS package. There's 17,680 Australians who have a primary diagnosis of cerebral palsy. There's about 1,800 West Australians with a primary diagnosis of cerebral palsy, about 7,400 of the 17,680 Australians with cerebral palsy are kids. We provide individual packages. The average package for a child with cerebral palsy is about $56,000. Of course, that's an average depending on their needs. For about 25% of the people with cerebral palsy, we provide them with care in terms of supported independent living. So literally, because of the generosity of the Australian taxpayer, because of the work of our clever researchers, because of the interaction of our business in Western Australia, because of a government who wants to see better value. What we're saying is that your disability shouldn't define your whole life, but I hope that gives you some data points.

JOURNALIST: Thank you. And could you tell us, obviously Dayna is quite an entrepreneur. What do you see as being the unique gap that has been filled by this service?

SHORTEN: I think for me, what I take away from the visit here is that this is a scalable proposition. What we're seeing is clever researchers applying their research with kids and then keeping the evidence, and then by the application of clever researchers, by the interaction with kids and their families, what we're seeing is evidence which allows people not just in the rest of Australia, but people around the world to say, wow, maybe we can do things better. And the beauty of what I see here, and this bit gives me goosebumps, is that the help that we're giving, or the Dayna and her crew are giving Nate and all the other people who use it, is it means that they're going to have a better school experience, which means they'll learn more, they'll have more friends. They won't be isolated. Just as ignoring a child and treating them with the tyranny of low expectations sentence them to a sort of very bleak view of the world, when you can see and not have a deficit view of the child, but an optimistic view, an investment view in that child, the exponential benefit to all of us is breathtaking.

JOURNALIST: So, you see it as quite unique. Would you like to see it rolled out much more broadly?

SHORTEN: Well, I certainly see that what it's doing is scalable, replicable, and clever. And I've got no doubt there'll be parents around Australia and services around Australia who say, that's really interesting. See, sometimes it's possible in our busy lives to get into our silos and we don't always compare knowledge. Dayna and her colleagues have got a podcast which you can listen to. But apart from the mainstream media, which you all represent, but you know, when you're in between your shows.

But it is comparing the knowledge. So yes, I do see this as an expansionary idea. And gee, I'm pleased that Zanetta encouraged me to come here today because this is why we have an NDIS and it just makes me more incentivised and more idealistic than maybe the diagnosis of an impairment is the start of a non-standard journey. But it's not - there's not one off-ramp when you've got a disability. In fact, there's a whole highway of life, and this provides many different off ramps for kids to pursue as adults.

JOURNALIST: Mr. Shorten the NDIS Financial Sustainability Framework. Can you tell me, was economic modelling done to inform that? And will you commit to releasing that model into the public?

SHORTEN: It's part of National Cabinet, so you'd have to ask the people of National Cabinet, of which I'm not one. In terms of national Cabinet documents, as a general rule, they're not released. But what I will undertake to whoever sent you that question, but more importantly to people in Australia, is the NDIS is here to stay. We will make sure that every dollar gets through to the people for whom the scheme was designed. I think through sensible management we can decrease the trajectory of growth. By that, at the moment it's growing, it's been growing higgledy piggledy, 14% per year. But I actually think some of the culprits for that excessive growth, they're not the people with disabilities, they're not the researchers, they're not these service providers. I think if you run the scheme better, if you invest in the capability of people running the scheme, if you have longer term planning, if you start looking at making sure that our housing options are sensible, if you start clamping down on fraud, if you start tackling and removing unethical practices, if we have clarity about eligibility for the scheme, if we make sure that the therapies that are getting funded are evidence based, this country is smart enough, generous enough to make sure that your disability doesn't become the only thing which defines you. And yes, I think we can run it in a more sustainable fashion than my Coalition colleagues did for the last nine years.

JOURNALIST: Mr. Shorten, can I ask you a slightly different topic? We've got the date coming out tomorrow for The Voice. Obviously, polling has been slumping, particularly here in WA. Are you hopeful that with the date tomorrow that we're going to see a big pick up in the Yes campaign? And are you worried about that lagging support in WA that lots of polls keep pointing to?

SHORTEN: Obviously, I won't make a comment particularly about Western Australia, it’s the last thing you need a Victorian to do. But in terms of what I see about the referendum generally nationally, I think with the date a lot more people will start to switch on to it. I think there's a lot of people who, I know we talk about it every day, but a lot of people haven't yet engaged in the issue fully. And as for the actual issue, the Constitution, which was written in the 1890s, does not include our First Nations people in it. So modern Australia's birth certificate doesn't have a part of the Australian population in it.

But the people who wrote the Constitution never said that you can't touch it. They put in mechanisms to change the constitution. So, some of the perhaps people who say, oh, it's not good to change the constitution, the people who wrote it gave us permission to change it and they gave us mechanisms to do it. But I think the argument, which will also, I think as people engage, start resonating, is this: there is a proposition which says that somehow by consulting First Nations people, Aboriginal and Torres Strait Islanders about decisions immediately impacting them, it gives them special rights. That’s wrong.

Because at the moment, in every milestone that an Australian experiences from birth to death and all the big things in between, Aboriginal and Torres Strait Islander people don't start from the same spot. The Voice and this Referendum is not something extra for Aboriginal people. It's just bringing Aboriginal people back from where they sit behind the rest of the population to an equal starting spot of being consulted. I know that Australians fundamentally have this whispering in their heart that we haven't got it right with our relations with Aboriginal people. And it's not about blaming anyone, but we have a whispering in our heart, an uneasiness in our conscience, which says just doing the same thing again and again and expecting a different result isn't quite good enough.

So this is, I genuinely believe, a modest proposal which says that if we're going to make a decision affecting you, we want to talk to you because we recognise you start from further behind. I think it's a sensible, modest proposition and as Australians go on, I think that we will correct the omission in our constitution because as someone once said, no lie can live forever. Currently the Constitution contains the lie that we don't include our first Australians.

JOURNALIST: [inaudible]

POOL: To try out an idea. I had an idea of how we can get kids with cerebral palsy up on their feet, a group of kids that really don't ever get the opportunity to be on their feet. They kind of always just in their wheelchairs. So, we developed an intervention. We tested it out at Princess Margaret Hospital previously, obviously, the Perth Children's Hospital now, with a team of researchers and the results were absolutely incredible. There were things we had never seen before, and as a result of that, I remember walking to my research team one day and saying to them, I think we should just make this available in the community. Like, it can't just be locked away in the hospital. So, I said, who’s coming with me. And so, five of us ventured out on our own. No funding, just did it out on our own terms. Got a small room not too far away from this place right now, 80m² and just got started.

And we just stayed with the mantra of providing evidence based therapy because we knew there was a gap. We knew there was a gap for children who have really profound physical impairments that just don't get given opportunities. And we found an intervention that worked. From there, we just built on that time and time again, and we've been lucky enough to be able to keep building on that through telethon funding once again through research grants. And again, that's just spurred on more innovation and that's why we're here now. So, five years later, we went from an 80 square metre space to a now 800 square metre space and continuously growing. So, it was meeting a need and the families were central to that. Families told us exactly what they wanted. We just need to be brave enough to step out and give it a go, which is not an easy thing to do when you decide to go from full time pay to probably absolutely nothing for a little while, but it's been a privilege at which to do so.

JOURNALIST: So you dug into your own savings or took on debt to do this?

POOL: Yeah, we did. Just remortgaged our house and just to get started, get some initial capital to start, to buy a treadmill. And we were really innovative what we could do with very little money. And I think that's probably the really cool thing about what we've done is we've always been really responsible with very limited resources, and that mantra has carried on now. We respect every piece of equipment that we have here as a result of it. So, we've managed to pay ourselves back now over time, but now we're self-sustaining. Families choose to come to us. So, a lot of our families here do have the NDIS and it's their choice if they want to come and engage with us and we just say unapologetically, we just do things that are following the science and these are the results that we do see and that's been really supported. And that says a lot. Yeah.

JOURNALIST: This might be a bit of a tricky one, but we've seen the wait times blow up for occupational therapists quite considerably. Well over a year. Is there any more that the Federal Government could be doing to help in that respect?

POOL: I think that's all about training. So, I think we really need to get - we have so many graduates that do come out every single year, but how can we inspire those graduates to want to be in this area and how can we upskill them fast enough so they can meet that need and that service? And I think that's probably where it's at, too. So, I think if we can be more coordinated with our training on a national basis, I think we can meet that need.