E&OE TRANSCRIPT
RADIO INTERVIEW
ABC RADIO ADELAIDE
TUESDAY, 26 MAY 2020

SUBJECTS: The deaths of Ann-Marie Smith and David Harris; Efficacy of the NDIS Quality & Safeguards Commission; Structural accountability; Disability advocate funding; Screening carers; Community visitor programs; South Australian Disability Taskforce.

JULES SCHILLER, HOST: Ann-Marie Smith, as we know, died in hospital on April 6, and it’s important to know how she died because this is where it becomes so shocking. She died from septic shock, multiple organ failure, severe pressure sores and malnourishment, which developed in her Kensington Gardens home. It's a shocking death and one that occurred even though she had been assigned a support worker by an NDIS administered non-government organisation, Integrity Care S.A, and that support worker, of course, is now the subject of a criminal investigation. But she isn't the only NDIS client to have died this way. David Harris, now this is another harrowing story, he was 55 and he was living with a serious psychiatric condition that made it challenging for him to manage his diabetes, and when he missed one annual review appointment with the National Disability Insurance Agency, his payments were subsequently cut off. He died alone in his kitchen in early 2019, he was found in July and his body was so decomposed that the coroner could not exactly say how he died or when. Both were failed by a system designed to protect them, is it time for a thorough review of how the system works? Is it now fundamentally flawed? I'm joined now by the Shadow Minister for the National Disability Insurance Scheme, Bill Shorten, welcome Bill Shorten.

BILL SHORTEN, MEMBER FOR MARIBYRNONG: Hello, Jules, thanks for covering this nightmare.

SCHILLER: Well, I mean, for anyone who has a disabled child, who is worried about when they die, a disabled child might be left in the hands of the NDIS, I mean, this is just truly a nightmare hearing the stories of those two deaths, because these are just not deaths, these are shocking deaths.

SHORTEN: It is shocking and it's the midnight anxiety of so many family members, but indeed, people with the profound disabilities themselves, they’re vulnerable. The NDIS was set up - and I'll be interested to hear what Kelly Vincent has to say because she's been a disability campaigner for a very long time - but the NDIS was set up to give people control over their own lives, but something's gone horribly awry here and you can only use minimalist language and say it's an accident or you know, it's not, we don't know and by that I say we know it was an accident. We don't know if other people are in this situation as we talk on radio and as people listen to this show. It is a federal issue as you said, the NDIA provides the funding, but how are we checking that people are actually okay and in control?

SCHILLER: What about the mechanism, though? Because if a tradesman fell off some faulty scaffolding and died, then his business owner is going to go to jail for five years maybe and get a very big fine. It seems that Integrity Care, and we don't know their culpability at this stage, Bill Shorten, at the moment they've just received a $12,000, $12,600 fine for failing to report her death within 24 hours. But surely the penalties, if they're found to have been criminally negligent, should be greater? They should be suspended, shouldn't they, at the moment?

SHORTEN: Oh, suspended – well, we don't know their culpability and each case is separate and so with those caveats, I feel, my first gut reaction when I heard $12,000, it’s the equivalent of a speeding fine, and now the South Australian police are investigating today after several days of Labor calling for it and others, the watchdog, so-called, is getting an independent judge in and those results will be public. So that is a step forward, but they're only looking at one, this one terrible case and not even the case of David Harris in New South Wales. So, I agree, something is profoundly not right and it's not enough. You know, the paid support worker, they’ll investigate their role, they’ll investigate Integrity Care, but I want to know, what was the NDIA doing just paying out the money and not checking if the person was getting value? What was the watchdog? I mean, it's got teeth, but I don't know if there's any evidence that it actually bites anything.

SCHILLER: Well, we know the NDIS was underspent by about $4.6 billion in 2018 & 19 and we know that -

SHORTEN: A vaunted budget.

SCHILLER: Many people say that, well, that was because it was no services in the area or they couldn't get the equipment or they were on long waiting lists. You know, many people have theories as to why it was so underspent, but surely they could assign extra caseworkers or people who can you know, who can check on the support workers, Bill Shorten, surely they can employ more staff?

SHORTEN: Well, they can also stop cutting the funding of disability advocacy organisations, why not have a visitor program? Maurice Corcoran, who was the South Australian Chief Public Advocate or a title similar to that, he put them on notice a year and a half ago. So what worries me is that you’ve got vulnerable people, in this case it was a woman, and the situation that’s been reported in the media is so shocking, but the situation seems to be going for a year and even when she passed away, it took weeks and you know, the ambulance service talking to the police, to both the state government and the national government to sort of be aware, this is not right, it doesn't feel right. I think it's a scandal and for one moment, let's park Liberal/Labor and all that finger-pointing, people with profound disability shouldn't be so disempowered that they're dying in a situation of terrible neglect and neglect by the way, isn't a strong enough word because when you're so recklessly indifferent to the fate of someone, it's more than neglect.

SCHILLER: Yeah, it's, like you say, Bill Shorten is this went over a year and when you hear the terms, even just pressure sores, malnourishment, I mean, these are highly distressing to hear that this was happening in a suburban street over such a large amount of time.

SHORTEN: But it's also happening, this fellow, this man, David Harris, you know, his sister, who I think lives in South Australia, she's been persisting trying to raise this issue but when he didn't turn up for an NDIS funding appointed planning meeting, they cut him off and no one went to check, he lived on his own and two months after he died? The whole - we're all letting our people down when that happens.

SCHILLER: Kelly Vincent is co-chair of the State Government's disability task force. She joins me now, welcome, Kelly Vincent.

KELLY VINCENT, CO-CHAIR OF THE SOUTH AUSTRALIAN DISABILITY TASKFORCE: Thanks, Charles.

SCHILLER: In South Australia, the NDIS hasn't functioned well, you know, we've got the longest waiting lists in the nation, I think there are people who have been waiting to get on the NDIS in South Australia who have died on the waiting list, there’s a 40 per cent rise in abuse and complaints from 2018 to 19. What is going wrong with the NDIS in this state and in the country?

VINCENT: There are a lot of things that need to be addressed here, for one thing, when I get my plan reviewed, when my brother gets his NDIS plan reviewed, we actually have direct contact with the planner that is doing that review. So, where has that happened in Ann-Marie’s case, surely there must have been some contact via the NDIA with Ann-Marie. Someone must have known that she was going without the support, or were they just allowing for the support worker to speak on her behalf? So, there is a lot to be said. As Mr. Shorten said before, the lack of advocacy services, the de-funding of advocacy services here in South Australia has I think, led to people like Ann-Marie being very vulnerable, because it's important to remember that disabled people are not necessarily inherently vulnerable, that vulnerability comes not from the fact that we're different, but the way that society treats us because we are different and we don't have the right support when indeed we are left in the hands of people who are abusive and Bill was quite right when he said that neglect isn't a strong enough word, this isn’t neglect this is torture. To be left in the same place for a year in your own excrement without proper food, and without people with the ability to support you, your body shuts down, over the course of a year is absolute torture. So that's why as part of this task force we won't directly be looking into Ann-Marie’s case, but we'll be looking into how people end up in the situation that she tragically found herself in, or was put in, and how do we get into that situation. It’s a very big task that this task force has ahead of us.

SCHILLER: Is that is the problem, Kelly, that, you know, there's a federal review, there's a task force set off here, that when we look into cases like this you know, this agency is a little bit culpable, that's a little bit culpable you know, NDIS is a little bit culpable, Integrity Care, and so everyone has a little bit of blame, but no one is really held accountable. So everyone says we must do these things a little bit better, and again, her death is, I'm going to say avenged, but it just seems that often no one is held really accountable, everyone’s just slightly accountable and the problem keeps going, the cracks keep existing and people keep falling through them.

VINCENT: Absolutely and I think you've hit the nail on the head there, there is no one agency that we can put to, obviously, the perpetrator of the abuses is the main culprit here and that's an ongoing investigation. However, there are a lot of gaps here, the National Disability Insurance Scheme, the State Government, even at the community level. You know I can't help but think that when a non-disabled person stopped going outside or stopped showing up to their meetings, because as you said in the case of Mr. Harris, somebody usually you know, pops around to the house or knocks on the door, so where is that community responsibility in regard to disabled people as well?

SCHILLER: Yeah, If you see the newspapers and I know that the poor gentleman who died in Sydney, the newspapers are piling up at his front door and no one goes to check. It's only when, I’m not going to go into it because that case is like Ann-Marie Smith, is really disturbing, Kelly Vincent. So, what do you hope that these inquiries might achieve?

VINCENT: Well, I will say I don't want to pre-empt what the taskforce or the federal inquiry is going to find, we're having our first meeting tomorrow, but I think there are a number of issues we can look into here. One is, as we've touched on the way that the NDIA is communicating with participants in the scheme, another is that here, back here in South Australia, a number of years ago, a ministerial disability council was actually tasked with looking into the safeguarding of people with disabilities and they identified a number of issues that still a number of years on haven’t been actioned. I think there's also the need to look into the community visitor scheme as was touched on with Maurice Corcoran and whether that to be expanded, to allow that to go into private homes every once in a while, to allow that kind of oversight to occur. Now, obviously, I can see that that would have to be something of an opt-in scheme and here would have to be some checks and balances with that because you don’t want to invade people's privacy. But I think this goes to show that if this can happen in a leafy, well-to-do suburb of Adelaide, well, let's just think about how much more disadvantaged other people are. So, I think there's a big need for that discussion about the community visitor scheme in private homes as well.

SCHILLER: That’s a very good point and one that is reflected on in the text line. Look, let me end with Bill Shorten, of course, the Shadow Minister for the National Disability Insurance Scheme. Bill Shorten, do we need better training and monitoring of support workers, should we ever leave someone alone with just one support worker, as good as they might be?

SHORTEN: Can I be controversial? Most support workers are so professional and so empathetic, they will be feeling sick about this. Training is important. The NDIS has expanded at a rate of knots. You know, I helped create it and it's great to hear Kelly firing on all cylinders there, a lot of people have pushed to get greater resources. But when I was a union rep, and I know it's unfashionable to say you were a union rep, but I was a union rep and I went through Royal Commissions where there were workplace disasters, and everyone always says more training is the key. Well, yes, it is the key, but someone's got to be responsible. I mean, disability can be deeply uncomfortable for some people, they’ll say oh that's not us, it’s someone else. You know, if you're trapped in a chair, in a house or what have you, it’s like out of sight, out of mind. But what really disturbs me, why I think Anne-Marie has touched a chord is that could be anyone's child, It could be anyone's brother or sister, or it could be any of our partners, it could be us in a blink of an eye, and so it's somehow this should be that mechanism that we check in on people. It is not beyond our wit and wisdom. Every day, every night right now, there will be people would be going to work and are working one-out. Security guards or, you know, gardeners or what have you. But we've got isolated work practices to check people working one-out are okay. It’s not beyond our knowledge capacity, it’s not I don't believe it's expensive, but somehow is able to check in on people not to invade their privacy, but two months in your home dead, and a year in your chair?

SCHILLER: I know, and Bill and Kelly as well I think - I mean, I've got sort of personal experience in this because my brother was disabled and he, you know, he died in care. (Shorten: Oh, I’m sorry about that). This is many years ago. And there is a feeling and this is what I noticed and Kelly Vincent has far more experience in this than me, that when a disabled person dies, people often think while they're in a better place like you know, it's sad but, you know, in some ways it's good because they're not disabled. I think that when this happens, you know, that to a relative or to someone who is disabled, that's highly offensive, that someone has died and disabled, that it's somehow good, Bill Shorten? That they’re not in pain anymore.

SHORTEN: I’m not living in everyone's lives and not living in everyone's lounge room, you know, there'll be a million different opinions, perhaps. But I think fundamentally, you're right. At one point, certainly, which is this, if the Commonwealth's paying taxpayer money to care organisations who are then sending to people's homes or indeed, if they're not funding people - we have an obligation not just to either cut off the money or send the money and, you know, fire and forget. It's about giving people control in their own lives, this was a vulnerable woman who's essentially being coerced in her own house and it's just a disaster, it's a disaster for her, but it's a disaster for all of us.

SCHILLER: Bill Shorten, thank you for your time this afternoon,

SHORTEN: Yeah, and lovely to hear Kelly too.

SCHILLER: And Kelly Vincent, who's the co-chair of the state government's disability task force, thank you for your insight, too.