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28 June 2021

MONDAY, 28 JUNE 2021
SUBJECTS: Tragic and preventable death of NDIS participant Jeff Barker.

NADIA MITSOPOULOS, HOST: Last month, I held a morning spotlight forum on the National Disability Insurance Scheme, the NDIS, and the growing and widespread concerns people have about funding cuts and not getting the support they need. And during that forum, Carolyn Tenardi called in to tell us about her brother, Jeff Barker, and how the NDIS had failed him and may well have cost him his life. Jeff was found unconscious in his Bunbury home and died a short time later. He had Type 1 Diabetes and bipolar disorder, and Carolyn told us that had support services visited him every day like they asked them to do, he may well be alive now. Now, this death, Jeff’s death, is now under investigation and Carolyn joins me for an update. Carolyn, thanks again for your time and nice to talk to you again.

CAROLYN TENARDI: Thanks, Nadia. It's great to have the opportunity.

MITSOPOULOS: Can you just remind us about Jeff’s circumstances in those last few days and what you understand happened?

TENARDI: Well, on the 20th of April, we raised the alarm, this year. Jeff had just been transitioning into a private residential rental and we just noticed a decline in his mental health and physical condition. And we conveyed our concerns through his specialist support coordinator, asking for daily welfare checks to be conducted and outlining, I think quite succinctly, the risk associated with not conducting checks and what we had experienced previously when Jeff had been in this condition of decline. And we understood the checks would be conducted, however, we were told by an emergency doctor at Bunbury Regional Hospital on the 2nd of May that in fact, they were not. Following Jeff's death, we were told by his coordinator that these were not conducted because of Jeff's right to say no.

MITSOPOULOS: Okay, so a couple of things. First of all, the state of his house, what did that indicate when he was found about how he was coping?

TENARDI: It was in chaos, absolute chaos. He'd been transitioning into the rental property for several weeks. I hadn't actually been involved directly, but he had been receiving support throughout. And the place was in, I think we calculated, sixty-five hours of cleaning was involved, and he'd been there for ten days. We just couldn't believe the chaotic state of the place, which was just, it was - we were just so distressed by the situation.

MITSOPOULOS: So, under the NDIS scheme, you did ask for those support services to check on him every day. They did say to you that they would do that. Is that right? They did give you that chance.

TENARDI: We had no we had no reason to doubt that it would be conducted. We followed up a written request with phone calls both for myself and my mum. And they seem to be no reason for it not to occur. So, it was only Jeff’s decline in his mental capabilities that would have created agitation and probably objection to what he would have considered an intrusion at that time. So, he said no to support workers coming to visit him and they chose not to.

MITSOPOULOS: And support workers would have been in the position to be able to override that and say, no, we're going to come we're going to just make sure you're okay?

TENARDI: I don't know. If they couldn't, they could have asked the police to. So, the police potentially could have conducted welfare checks as well. We're talking about somebody who could potentially have been unconscious for two days in a critical condition.

MITSOPOULOS: Sorry to interrupt, Carolyn. And did they say to you, look, he said, no, he doesn't want us to come. Was that ever conveyed to you?

TENARDI: No, the support agency didn't say no, but the support coordinator said that they were not, the support agency were not, conducting the daily welfare checks because of Jeff's right to say no. And by that stage, Jeff wouldn't have understood the implication and the risk to his life by saying no. As a family, we'd intervened numerous times in similar situations, but obviously in time for Jeff to be revived. And on this occasion, it just went too long.

MITSOPOULOS: And in the NDIS system and the way you deal with his support services, was there any avenue for you or someone else to override his right to say no? And if not, is there something that needs to be looked at?

TENARDI: I think it is definitely something that needs to be looked at. It's crucial to someone's survival, evidently with the outcome around Jeff. There needs to be a line of reporting that can inform the family as to how acute situations become and also some network with the medical and mental health systems so that there is support when situations do decline to the state that Jeff was in.

MITSOPOULOS: And you were living in different towns at that point, too, weren't you?

TENARDI: We were a 300-kilometre round trip from Jeff, and it was just impossible to conduct daily welfare checks ourselves. And we knew that we couldn't create the stability of supports in Augusta any longer. The support originally in March 2020 were inexplicably removed from his flat in Augusta, which prompted the initial decline, the most recent decline. So, he was hospitalised in an emergency situation in June of 2020 and remained in hospital until the 1st of September. 

MITSOPOULOS: I was just going to remind people that I'm talking to Carolyn Tenardi, the sister of Jeff Barker, who died while on the NDIS and his death is now being investigated. How is that being investigated and what are the answers that you want?

TENARDI: Well, the NDIS Quality and Safeguards Commission, I have been speaking to a representative from their office, and progress will be impacted by a coronial report. So, they need to adhere to the requirements or processes of the coroner's office. But I have forwarded on information that I can, to enable an investigation into what happened and hopefully some improvements to the system to avoid other unnecessary deaths.

MITSOPOULOS: How devastating is your family over this, Carolyn?

TENARDI: My mum... sorry, Nadia. My mum has been undergoing counselling with Relationships Australia who have been amazing, since last year, which we instigated because of the anxiety surrounding the separation from her son. And she feels so responsible for the situation. I know she’s listening now at home and it is really hard to help Mum process this and to understand that she couldn't have done more to try and support her son. She's 84 and we needed to plan for as much independence for Jeff as we could in regard to his living situation. And we were led to believe that this was the best outcome, that he would have the best access to or improved access to NDIS approved care agencies, and he would have better access to specialist medical care. And this would improve his outcomes, not end in this catastrophic way.

MITSOPOULOS: Your family deserves answers Carolyn Tenardi, we’ll keep asking questions on your behalf, as I know a lot of people are. 

TENARDI: Thanks, Nadia.

MITSOPOULOS: And I thank you again for talking to me. This is just a tragedy on so many levels. I just want to quickly go to Bill Shorten. He's the Labor spokesman for the NDIS. Bill, good morning to you. What does this case indicate to you?

BILL SHORTEN, MEMBER FOR MARIBYRNONG: Well, first of all, it's just a shocking tragedy for Jeff and his family. And we just heard Carolyn, I think, put a very human face on what's happened. It's terrible. My frustration on these tragedies and just the loss of life. It's I can't help wondering, was this avoidable? Anyone listening to Carolyn would have to draw the conclusion that the system failed her brother, failed his mother. We’ve had five different stories in recent times about people passing away whilst on the NDIS or people who had been on the NDIS and cut off, where there was no follow up and, in my opinion, insufficient care. This is not an isolated example. This, in my opinion, based on what I know so far, was not inevitable. It's a tragedy.

MITSOPOULOS: So, what needs to change in the system to prevent something like this happening again? Because the issue here is the fact that Jeff was saying, no, I don't need anyone to come and see me.

SHORTEN: Well, first of all, I'm not going to just rely on the case that somehow Jeff brought it upon himself and that that he's the instigator of his own fate. I don't accept that. I do welcome an inquiry by the NDIS watchdog and the coroner. What I think is, at the very start of the system, when someone's given NDIS funding, there needs to be in that screening interview, checks put in and to see someone particularly vulnerable by virtue of their impairment. I mean, if we know that people with bipolar condition who have the sort of impairments Jeff had, these are not new facts in terms of how behaviour will be, a red flag should go up. We have screening for people all the time. Think about the people now, perhaps sitting in a queue to get vaccinated at Perth health facilities. They ask you screening questions. This is not rocket science, I am not inventing some new form of a magical system here. It's already been done; we can screen better. We've got to have a system of checking or making sure the care that's being rendered is actually being delivered. We've also got to make sure that the Agency doesn't just cut people off or just see itself in a diminished payment system role without actually understanding, every individual on the NDIS matters. Now, I must say at this point, there are thousands of hard-working people in the National Disability Insurance Agency, but I believe the problem starts at the top. Now, the problem at the top doesn't necessarily comprehend what happens to Jeff, but the problem at the top I'm describing is they've lost sight of the values and vision of it. It's become a cost cutting exercise, dreaming up new ways of making it harder to access the NDIS. There's imperceptible instructions, we've got to get costs down. I mean, if everything we read every day about the NDIS, both internally and externally is it's too expensive, then these sorts of things will happen. People will get missed; people will fall between the cracks.

MITSOPOULOS: Bill Shorten, I'll leave it there and I thank you very much for your time. Look, if there’s a story you have to share and we talk a lot about this, I'll take some calls. I'll have to do it later in the program after 10, but 1300 222 720. We've asked for a statement from the NDIA, we have one. It expresses its condolences to the family of Mr Barker and has been in direct contact with his family. The NDIS says its cooperating with all investigations. It goes on to say, it is incorrect to say the NDIS at any time made a decision to remove Mr Barker's support services. We didn't say that. Mr Barker continued to have access to NDIS funding, including funding for support coordination. We never said that. We were asking why he wasn't being checked every day, as per the request of the family. It goes on to say, the health and wellbeing of the NDIS participants is of the highest priority and the NDIS are committed to ensuring NDIS participants have the disability related support they need. We will keep pursuing the issue of the NDIS and I'm hoping. I am working on this. and I'm hoping that in a couple of weeks I can get Linda Reynolds, the NDIS Minister, back into the studio to take your calls. It's what you wanted the last time she came in. She didn't take calls. She listened to your story. And I'm hoping if all goes to plan, she’ll take your calls in the studio in a couple of weeks.