E&OE TRANSCRIPT
SUBJECTS: Autism on the NDIS; NDIS Review
HOST, MELINDA JAMES: All right, Tony, thanks so much for calling in. Look, really interesting experiences from lots of people. Greg says, Mel, the NDIS has supported me to keep working without that support, I'd have to retire. So, lots of people full of praise for the scheme, but there are clearly issues, and they're not issues that have passed the Minister by and he joins us now, Bill Shorten the Minister for the National Disability Insurance Scheme, good morning to you.
MINISTER FOR THE NDIS AND GOVERNMENT SERVICES, BILL SHORTEN: Good morning, Melinda.
JAMES: Look, you're en-route to Wollongong to do a couple of things, including, I think, meet with local providers, is that right?
SHORTEN: Yes, doing that and also opening a new Hearing Services Australia operation at Fig Tree and visiting the Disability Trust as well. And I will be with Alison Byrne, the Member for Cunningham, and Stephen Jones, our member in the Illawarra.
JAMES: We've been getting stories throughout the morning of people's experience of being on the NDIS. It has become revolutionary and for a lot of people it's done extraordinary things for their quality of life, but there are lots of people talking about some of the things that need to be ironed out of which you are all too aware. But I just wanted to just clarify for people, because it all came out sort of over the weekend and then early this week about the potential for flagging, possibly the eligibility for the NDIS for people who are diagnosed as being on the autism spectrum. What is the state of play here? Can you just clarify that for us?
SHORTEN: We want the NDIS to be a consistent, equitable, transparent process for everyone, where the money gets through to the people for whom the Scheme was originally designed. The difficulty whenever there's any talk about autism is that sometimes with respect to the media, it sort of dumbs down the debate to ‘in or out’, which is not the case. A diagnosis of autism is entirely legitimate to be on the NDIS, it depends how your diagnosis affects you with core functions of living. So, autism will remain on the scheme, but not everyone with a diagnosis will be eligible for the scheme. So, autism is a fact of life and we've got to respect that. What we're having a discussion about is that rather than the NDIS be the golden ticket, you're either in that or you get nothing, we want to have a discussion about how do we build up a more inclusive system in Australia where the schools are better at helping people, the workplaces understand better. It shouldn't be all or nothing with the NDIS, but I want to reassure people that if you've got a significant disability of any kind, it's not just about autism of any kind and you're eligible scheme, you'll get in. What we also want to do is make sure that listening to participants who've been ringing up you saying confusion about how their plan works. I think the scheme micromanages too much of the wrong stuff and doesn't focus enough on outcomes. So, we've got a review after the next National Cabinet meeting. We'll publicise the review and we'll work through the review suggestions on how we can make the scheme a much more consistent experience which helps people change lives, as it is for a lot of people now.
JAMES: It looks like there's a lot of work to be done. I know that the NDIS is far beyond just diagnoses of autism, but a lot of people are talking about this because of maybe the number of autism diagnoses that are happening in Australia, and there's some suggestion that your access to the NDIS is driving diagnosis of more severe levels of autism, I suppose, or more debilitating diagnoses of autism. How do you envisage this working then in the future? You'll have to have individual case managers what, doing their own diagnostic work of people to double check because understandably, families go for a diagnosis because they're told it will get them more assistance?
SHORTEN: Well, there's so much in all of this, I'm probably not going to do it justice in a couple of minutes on radio, but I'll give it my best shot. First of all, it shouldn't just be the diagnosis, it's how your disability then affects you. What happened in about 2017 is that there's different broad categories of autism. Of course, every person's unique, but broadly, there was an administrative decision made that if you had a diagnosis of autism two, autism three is very serious, autism two is significant, autism one less so. But if you were categorised as [inaudible], you could practically just get on the scheme. There has been a pattern where autism one has really disappeared in Australia, but a lot more have got autism two. Now, our challenge, therefore but I don't judge parents wanting to make sure their kids have got a developmental delay, really doing anything they can to get assistance for their kids. So, what we're seeing is the phenomena of kids with developmental delay because there's not enough support in the broader community. Everyone wants to get to the NDIS because it can provide that crucial support. But it was never intended for lots of people, it was intended for the most severe. So, before we can talk about access to the scheme, we've also got to talk about what else there is for families. A lot of times parents need to be connected up with other parents. The Scheme wasn't meant to just provide an adult form of support for a four year old, you know, hours and hours of individual therapy automatically, it was about how do we support a family, raise a child, how do we make sure the early years education system helps kids. So, it's not all or nothing. The review is not going to come out and say, well, the day after the review, everyone's world changes, it won't. In terms of then getting onto the scheme, we want to make it consistent. There's a little bit of a two class system in accessing the scheme, there's some people missing out because their English mightn't be great or they might come from a sort of a well off middle class background where you can access lots of doctors. You might live in a more regional, remote part of Australia where you don't have the same resources, people in the middle of the big cities. So, what we want to do is not create a whole industry of doctors and how you get into the scheme, but rather create some consistent tests which families and Medicos and other people can use, so that we're at least talking about the same thing at the same time.
JAMES: It sounds a little like the government and you are saying that you don't want to see necessarily a reduction in services, but you want to see the load shared. We've heard again and again from architects of the NDIS, originally local service providers, et cetera, about how the state governments really need to start pulling their weight a little more, because a lot of this is to do with what should be happening within the education system, for example, and other places. What signals are you getting from the States about them first accepting their responsibility in some of these areas?
SHORTEN: Yeah, I've got a bit of work to do there, the states would say that they paid a contribution to help fund the initial setup of the scheme and that therefore is really they've already sort of paid their way. And there is truth in that. But the reality is that the amount of unmeasured demand of disability in Australia at the time the scheme was set up was greater than originally forecast. So, we need to have another conversation about how the scheme doesn't become the only lifeboat in the ocean. So, there is a discussion to be had about schools, I can't shirk that, and really, when we think about it, and I'm sure for lots of parents and people who've gone through schools and parents have had kids go through schools, they know in their heart of hearts, we've got to do more for disability inclusion in schools, but none of that's easy. But what was never intended was that the NDIS would become a surrogate education system.
JAMES: Can I ask just one final question?
SHORTEN: Sure.
JAMES: And moving to the other end of the lifespan, because here locally we had a local couple, Chris and Bobby English. Chris suffered a catastrophic accident, but just above the age of the NDIS age cap, so he managed to not get any assistance, basically, and so we now know of this Victorian man with a lifelong disability who's lodging a complaint with the UN over the NDIS age cap. If the aged care system in Australia isn't adequately providing for people with a disability, do they need to be included in the NDIS?
SHORTEN: When we were setting up the NDIS, and I know because I was there, aged care was superior to disability back 12,13,14,15 years ago, the only way you could get resources and disability is if you were in crisis and if your crisis was worse today than it was yesterday and would be even worse the day after. That's not a way to allocate resources, that's a disaster. So, we specifically set up the NDIS for people under 65 because the NDIS was covering a gap in the market which was real. For people over 65, that aged care assessment teams, graduated levels of support, what's happened is, under the previous coalition government aged care has gone to the toilet too often. It's not working as well and people are saying, hey, we now want some of that NDIS stuff. The reality is we have to improve aged care, the legislation was clear. To be honest, when I was in opposition, I looked at this issue of 65 plus and legal actions, the law is pretty clear. The Parliament turned its mind to this issue of the age cut off and the Parliament from all sides was very clear that it said NDIS for under 65s, aged care for over 65s. That doesn't mean that your callers Bobby and Chris English are having a good time of it, they're clearly not, I'm sure, but the challenge, I think, is to improve aged care for over 65s. So, I acknowledge there's a challenge there about funding disability over 65, but if we were to put everyone over 65 with a disability into the NDIS, the NDIS wouldn't exist.
JAMES: Yeah. You've had the results of this review into the NDIS for some time. When will we see it publicly?
SHORTEN: As soon as possible. We've given it to the states out of respect, we want to talk to them about it. It'll be discussed at National Cabinet, but I do want to then release the report.
JAMES: I really appreciate you giving us so much of your time this morning. Thank you and enjoy the Illawarra while you’re here.
SHORTEN: Thanks for your interest on the NDIS, always happy to listen to callers and talk about their problems.
JAMES: Bill Shorten, Minister for the National Disability Insurance Scheme, who is on his way to Wollongong now.