E&OE TRANSCRIPT

SUBJECTS: Autism on the NDIS; NDIS Review

DAVID BEVAN, HOST: Bill Shorten joins us now. Good morning, Minister.

BILL SHORTEN, MINISTER FOR THE NDIS AND GOVERNMENT SERVICES: Good morning.

BEVAN: Are you going to put the brakes on funding for autism?

SHORTEN: No, I think it's important that - one of the reasons I wanted to make myself available to talk to you is that it's important that on one hand, we make sure the NDIS is working as was intended. But on the other hand, I don't want whole groups of people just sort of panicking because they've got half the picture. We're reviewing the NDIS. In many cases, in the ten years since it was created, it's been changing lives fantastically, but in some cases, it's not working as intended. We're seeing some service providers provide services which are inappropriate. We're seeing some people get between the taxpayer and the participant and sort of siphon off money for their own profit, rather than focusing on the participant in the scheme. There's no doubt that early intervention is crucial, and what we want to do is make sure that kids who have a developmental delay, which is so serious that they warrant being on the scheme, that they're getting the early interventions, which are based on the best evidence, not junk therapies.

BEVAN: Right. Well, to tease that out and put it in some sort of context, is autism the disability, which has grown more than any other since the NDIS was set up?

SHORTEN: That is certainly true. That is certainly true. About 270,000, roughly of the 600,000 plus participants are kids, and a diagnosis of autism in amongst the disabilities that the kids present with is the largest group and I've got no doubt that diagnosis may be correct. What we're seeing, though, is the scheme was designed for those whose disability has the greatest functional impact on their development. We all know early intervention is an excellent tool to help get kids with developmental delay to do better because we're helping them earlier, but the NDIS is in danger of becoming the only lifeboat in the ocean, and so we've got to have a conversation in Australia about helping kids with milder forms of developmental delay, who don't need to be on the NDIS, but we have to have a conversation, how do we make sure they don't miss out on early intervention, which will set them back?

BEVAN: Right, because if you're the only lifeboat in the ocean, everybody's going to want to jump in there. Although that, are you saying that particular boat was never designed for and got to choose our words so carefully here, Bill Shorten, but all right, I'll stick my head out, my neck out, it was, the NDIS was never designed for, how should we say low level disability like some?

SHORTEN: Well, use perhaps to help you out here, if you assume that there is an average development capability in a child, if then you assume there's certain standard deviations away from what is the average or the mean, the scheme was designed for kids who are quite well below what a developmental norm might look like. What's happened, of course, is that there's not enough support for early intervention. I mean, South Australia is a bit of a standout. They're doing pretty well. You've got Emily Bourke, who Peter Malinauskas put in to help with autism in particular, but as a general rule, we don't have enough inclusive services which provide support for families, parents, kids, without being on the NDIS. So that's the conversation we've got to have. It shouldn't be such a steep cliff between you get on the NDIS and your life is better resourced, and it's not - because the scheme wasn't intended to help all people with disabilities. But the issue for parents listening to this right now, people on the scheme is our aim is to humanize the scheme, to make it a less bureaucratic, more human experience. We are completely committed to the power of early intervention. We just want to make sure that the early intervention is actually meaningful, and that families and participants and kids are not just being billed for hour upon hour of service, which, frankly, isn't adding to the developmental outcomes for a child. So, there's a lot of moving parts here. We get that we want to make the scheme sustainable for future generations. Autism has been a fast-growing group, but the review's not about a single condition and I don't – so, I just don't want people who are listening to this who might have a child on the scheme to think something's going to change tomorrow, because it's not, but we do have to have a conversation about what's the most inclusive environment that all levels of government can create for a child who is some form of developmental delay.

BEVAN: Yeah, and is the problem here that with the best will in the world, if you're developing a system which hands out taxpayers’ money, you have to draw the line somewhere, and if one child with autism and the next child with autism, they could have completely different levels of functionality but they're both –

SHORTEN: Yeah.

BEVAN: So where do you draw the line? And if you draw the line, then somebody is going to say, well, hang on, I just missed out, that's not fair.

SHORTEN: Well, first of all, the scheme was designed for people who need assistance with core functioning, with the most profound disabilities. I don't think the scheme was ever intended just to say I have a diagnosis, therefore I'm on the scheme. Your question goes to the heart of it, it's how does your disability interact with your ability to live life and engage? So, I think one thing which we have to have a conversation about is rather than just saying, I've got autism too, therefore I'm on the scheme, it's, how does my autism affect my learning? And, you know, obviously there's every person is an individual and unique and it all depends on evidence. We just want to move away from diagnosis writing you into the scheme because what happens is everyone gets the diagnosis then. So, we need to look at what a child or an adult's needs are not just with autism but with any disability.

BEVAN: So, do you have to, and eventually the buck will stop with you, Minister Bill Shorten, do you have to put some new strict guidelines in place?

SHORTEN: I think we need to have clarity around entry.

BEVAN: So that's a yes? That's what clarity means, strict guidelines?

SHORTEN: Well, you used the word strict, but I just use the word clear. Sometimes, I found that in the first nine years of the scheme it's been rolled out very inconsistently. I guarantee you'll have callers who've, you know, seemingly got, with the same set of facts, two different answers from two different people in the NDIA or within their local area coordinators or the people they deal with. So, we've got to have consistency. We've got to have equity. If you've got a, you know, to use a sort of a bit of a stereotype, but if you're an articulate, well-educated, middle-class family and you've got the right treating professionals, you can write yourself the report which you need to access support. But if you come from a more disadvantaged background, you don't know the right language and you don't know the right reports, then all of a sudden you don't get access. So, there's an equity issue, there's a consistency issue. The other thing is when decisions are made, they've got to be transparent. Like, people are basically fai, they'll do anything they can for their families, and you know, I'm no different, but people always want to know what the reasons are, the yeses and the nos and I think the scheme's growing at such a pace that the supporting structure around and scaffolding around decision making is not always been clear to people. So, it can be quite traumatising.

BEVAN: Okay, we're talking to Bill Shorten, he's the Minister for National Disability Insurance Scheme and there were reports on the weekend that well the way I read it, it was suggesting that somebody was going to put the squeeze on autism funding from the NDIS because the whole thing is just blowing out. That was, I think that was the takeaway impression a lot of people would have had.

SHORTEN: Yeah, that was the headline, and autism has been, people with a diagnosis of autism are certainly the largest group of people on the scheme, but I'm not focused on a particular disability or diagnosis. I just want a consistent, transparent scheme based on evidence where the money's getting to the people for whom the scheme was designed.

BEVAN: Now, you might have a question for Bill Shorten before he leaves us, if you have, call now 1300 222 891 is the number to call. The text line is 0467 922 891. We have this text from Belinda, she says my parents are profoundly deaf, my mother since birth from German measles and my father since 22 months of age. So, these are her parents she's talking about. They don't qualify for the NDIS on age alone despite going to special schools. We have seen state service providers closed since NDIS and they were left without support to even call an ambulance. You'd hear those sorts of stories all the time, before.

SHORTEN: I do. What I have learnt with these stories is there's always a back story, so if the individual wants to reach out through your producer to us, we'll follow up. But and as for being able to call an ambulance, like the NDIS can't do it all. But in terms of this age issue, there is an issue where if you get your diagnosis of disability after 65, then that's the aged care system. When the NDIS was created, there was at least the aged care system, but there was no consistent scheme for people under 65. So that's what the whole parliament legislated for, under 65. There are some people who decide to apply for the NDIS after the age of 65, and they're barred by the legislation. So, I can understand if people are frustrated with aged care, but that's the path that they've got to go to, getting a better aged care system. For people under 65, then they can see if they're eligible for the NDIS, and the other thing you mentioned, the caller or the correspondent mentioned is the states. The states do a good job, Nat Cook is your Minister in South Australia. She's quite a rock star, really. Her level of empathy and understanding of the system is second to none across the Commonwealth. Part of the challenge, though, is that when the scheme was set up, states would bundle in their disability services to sort of match the federal funding, and sometimes what's happened is that there's been concern within the broader community that these states, in bundling up their services put in the NDIS, there's not enough other supports for people who are not as profoundly disabled. And the feds, we've got to work with the states to try and work out what that looks like.

BEVAN: Well, didn't the state government just see this as an opportunity to cost the shift… shift the cost of the federal government?

SHORTEN: I'm a big believer in making the state-federal relations work, so I'm not going to criticise them. But that's a challenge.

BEVAN: But that must have been what happened ten years ago when this scheme set up. They said fantastic, Jay Weatherill, he was premier at the time. He'd been pouring money into disabilities, and then Bill Shorten says I got this great idea. We'll have a National Disability Insurance Scheme. Thank you very much, catch the ball now, I'm throwing it, Bill.

SHORTEN: There's a saying sometimes in politics, no good deed goes unpunished. But no, genuinely, I'm enjoying working with Premier Malinauskas and Minister Cook and Bourke. We want to have a discussion about not making the NDIS the sort of giant tree under which people seek shade, and there's nothing else for miles around. We want to have a discussion about how, the federal government included, can help support Australians with a disability, just to get a more inclusive environment. Like, what I mean by that is a better experience of schools, transport, employment opportunities, the whole thing that it takes to support people rather than just saying, I must get to the NDIS.

BEVAN: Right. Now, we've got a few texts coming in. One says, well, look, I'll read out the text in a moment, but Karen's waiting on the phone line. Hello, Karen from Myponga.

CALLER: Yes, hi, how are you? Thanks for listening. I just want to ask two questions. My grandson is on the NDIS scheme, he's only 11. The first few services that my daughter received there was a big discrepancy in the hourly rate charged and apparently the government sets the rate. This is approximate, I'm not quite sure of a real price, but between $200 and $600 an hour. So of course, the service company is going to charge $600 an hour. They're not going to say we'll do it on the cheap for you, and she had a couple of services come down to Aldinga and they said, oh, we’ll come on Monday because we've got 2 or 3 clients in that area, and we're going to charge you $200 each client for petrol. So, I mean that that's a big rip off. I mean, that's where a service could be trimmed back, and also, she's now allowed respite care for her son, but she's not allowed to take him away. She's allowed $2,000 a night to take him somewhere, anywhere, for respite. Not overseas, not on big holidays, but just for respite, but she can't go with him, but she can pay a carer to take him. Plus, the $2,000.

BEVAN: What, $2,000 for one night, Karen?

CALLER: Yep. That's what they're allowing to cover food and any activities that he wants to do and accommodation.

BEVAN: I don't mean to pry, Karen, but what's his level of disability? I mean, how much support does he actually need?

CALLER: Well, he can't go to school. He's allowed to go to school for an hour a day. He gets very, not violent, but very physical if things aren't right, if it's supposed to be a maths lesson and changes, then he gets upset about that.

BEVAN: Okay, but he's got autism, has he?

CALLER: Yes. Yes.

BEVAN: Bill Shorten $2,000 a night?

SHORTEN: I'm not sure that's right, okay? Let's - I mean, Karen is no doubt observing something which I've also observed, is that some service providers and I think I said it in an earlier answer, are getting in between the taxpayer and the person on the scheme, and they're siphoning off profits. If Karen wants to give us the name of the service providers, I'll check that out.

BEVAN: All right.

SHORTEN: I mean, the other thing is, though, which go here is the NDIS can't become the surrogate school system. Our job is to help kids get to school and what have you, but, you know, the school system's got to step up. The third thing, and there was a whole lot of things going on there is, I agree that some service providers are having a lend of the system. Not everyone should be being charged the same amount of petrol. It's one tank of petrol and if a service provider is charging three different people, they're getting three tanks of petrol for the price of using one.

BEVAN: Just before you leave us, and we know you've got to go soon, but text from Anne, she says, can you ask Mr. Shorten what supervision is being given to carers and NDIS clients? I've seen them down the bay, that's at Glenelg, totally ignoring their clients, talking on the phone, listening to music with headphones, not really caring.

SHORTEN: Yeah, I think that's right too. I think that is happening. What happens is that… the scheme has been poorly administered, in my opinion, up to now. I've got to listen to people with disability, I just can't come in with my big boots and say, we need to do x, y, z. We've been doing that for a year now, but now we're ready. One of the issues which has got on my goat is that the scheme creates, has registered providers and unregistered providers, which is ridiculous. Ultimately, whilst I understand that might have been necessary to get enough people into the scheme and I get some of the red tape and registration can be annoying to people, where you've got some disability carers, paid carers, taking someone down to the shops, sitting on the phone, just parking them in their chair and doing nothing, that is not what the scheme was designed for. So, we want to have better accreditation going forward of the workforce. We also want to make sure that there's reputable service providers who pay long service leave worker's comp, you know, do the training of the workforce. Then you've got others who create a business out of the boot of their car overnight, and it just pocketing the whole money without any proper examination of, are they up to the job? So again, the review will be discussed between Premiers and Prime Minister. It will then be made public, but the issues that last correspondent’s raising, and some that Karen was raising too will absolutely be front and centre.

BEVAN: And when will we get the new set of guidelines, rules, whatever you want to call it?

SHORTEN: Well, the direction hopefully in early December. Then I've got to convince states and territories and ideally our political opponents, to sign up to rules which make the scheme true to purpose rather than the sort of examples we've just heard through your listeners just then.

BEVAN: All right. Well, Bill Shorten, thank you very much for your time. That won't be the last time we speak on this.

SHORTEN: I'm sure it won't be.

BEVAN: Bill Shorten, Minister for the National Disability Insurance Scheme.