Public hearing 5: COVID-19, Sydney - Day 3
Video transcript
COMMISSIONER SACKVILLE: Good morning, everybody. I would like to start by acknowledging the Gadigal people of the Eora Nation, the traditional custodians of the land on which those of us in Sydney are sitting today and to pay my respects to the Elders past, present and emerging as well as to all First Nations people who may be viewing this public hearing. Yes, Ms Eastman.
MS EASTMAN: Good morning, Commissioners, and those following the proceedings of the Royal Commission. We're starting earlier this morning, at 9.30. The plan is to take the morning tea adjournment a little bit earlier, at 11am, and then resume at 11.15am and from 11.15, Dr Mellifont will have the conduct of the proceedings during the day. So, Commissioners, I may ask to be excused at that point in time.
COMMISSIONER SACKVILLE: Certainly.
MS EASTMAN: Commissioners, can I start with our witness this morning, Professor Anne Kavanagh.
COMMISSIONER SACKVILLE: Yes, can we bring Professor Kavanagh up on the screen, please?
Good morning, Professor Kavanagh. Thank you for joining us. First, I'll ask you please to take the oath or affirmation, so my associate will explain what is needed. Thank you.
ANNE KAVANAGH, AFFIRMED
EXAMINATION BY MS EASTMAN SC
MS EASTMAN: Good morning, Professor Kavanagh. Can I start by confirming you are Anne Marie Kavanagh?
A. Yes.
Q. You are the Chair of Disability and Health at the Melbourne School of Population and Global Health?
A. Yes.
Q. You've prepared a statement for the Royal Commission dated 12 August?
A. Yes.
Q. And are the contents of the statement true?
A. Yes.
Q. I think there's a few dates in the statement where we may vary by a day or so, but we'll correct those dates as we go through.
A. Okay, thank you.
MS EASTMAN: Commissioners, can I just deal with the formalities. A copy of Professor Kavanagh's statement you'll find in the tender bundle, part B behind tab 22, and I'll ask you to make the statement exhibit 5.30.
EXHIBIT #5.30, STATEMENT OF PROFESSOR KAVANAGH DATED 12 AUGUST 2020
MS EASTMAN: Professor Kavanagh's CV appears at tab 23, and then there are a number of exhibits, including publications, and you'll find those documents in tender bundle part D at tab 97 to 110 and Commissioners, if you could mark those exhibits 5.30.1 through to 5.30.15.
EXHIBIT #5.30.1 THROUGH TO 5.30.15, EXHIBITS TO PROFESSOR KAVANAGH'S STATEMENT
COMMISSIONER SACKVILLE: Yes, thank you.
MS EASTMAN: Professor Kavanagh, can I start with your professional background. As you've said, you are currently the Chair of Disability and Health, but you're also the head of the Disability and Health Unit at the Centre of Health Equity at the Melbourne School of Population and Global Health, and that's a role that you've held since March 2018?
A. Yes.
Q. You are also the co director and lead investigator on the Centre of Research Excellence in Disability and Health and that's a role that you've held since November 2016?
A. Yes.
Q. You have been appointed to a number of advisory committees for both State and Federal Governments?
A. Yes.
Q. You are by training a medical practitioner and you're an epidemiologist with a medical degree from Flinders University and a PhD from the Australian National University.
A. Yes.
Q. You've provided to the Royal Commission a copy of your CV, with a very extensive list of publications and research papers; is that right?
A. Yes.
MS EASTMAN: Can I say, Commissioners, I won't trouble you taking you through Professor Kavanagh's research work set out in her CV, but it is extensive.
Professor Kavanagh, can I ask you about your current areas of research? Your research focuses on the health of people with disability and you focus on how social determinants such as employment, housing, poverty and education influence the health of people with disabilities?
A. Yes.
Q. And your work identifies potential policy solutions to reduce disability related socioeconomic and health disadvantage.
A. Yes.
Q. Part of your research work has focused on the operation of the NDIS and impact on disability support worker workforce; is that right?
A. Yes.
Q. And your work also focuses on violence, abuse, neglect and exploitation of people with disability with a concentration on data?
A. Yes.
Q. Your work also takes an approach of focusing on the intersections of gender and other socioeconomic determinants and health outcomes?
A. Yes.
Q. The COVID 19 pandemic has certainly put a very sharp focus on both your research work and also the demands on you to participate in a large number of advisory committees; is that right?
A. Yes.
Q. During the course of this time, notwithstanding those demands, you have published a number of either opinion pieces or research papers during the course of COVID 19, focusing on particular issues; is that right?
A. Yes.
Q. Now, there are probably a myriad of issues that we could discuss with you this morning, but I want to focus on the six key issues that you've identified in your statement. But before I do that, can I bring you back perhaps to your role as a medical practitioner and epidemiologist. We've had a lot of discussion over the last few days about COVID 19, but we haven't had anybody with relevant health expertise to tell us what is COVID 19, how do we understand it in terms of a disease so can I ask you that first secondly, it would be of assistance to the Royal Commission to understand what COVID 19 means in the context of a public health response as opposed to responses that might be individualised. Could I start by asking you to just school us a little bit in the science and the medicine of COVID 19?
A. Okay. I don't pretend to be any big expert on this, but so COVID 19 is actually the name of the illness that's caused by the virus SARS CoV 2 which is related, people remember the SARS pandemic. SARS CoV 2 stands for Severe Acute Respiratory Syndrome, coronavirus and so, COVID 19 is actually the illness that comes from that. If you like, SARS CoV 2 is the bug. And as we know, it first emerged in Wuhan in China in late December and then we had our first case in January 2020. So it's a highly infectious virus and it causes quite a good degree of morbidity and death. So it was always a worry for infectious disease clinicians and infectious disease epidemiologists who saw very early the potential for it to be a pandemic. And, of course, there's no at that point in time, it's a new virus, that's why it's called a "novel virus" so there's no effective vaccine or treatment. The only way you can reduce transmission of SARS CoV 2 in the community to take a public health response to prevent an exponential rise of cases that you would get if you didn't put those containment measures in place.
Q. When you're talking about a "public health response", what does that mean?
A. What does that mean? So what we're trying to do is restrict people's contact, and restrict people's contact with people who could potentially have infection. That's the main game. So that's why we introduced things like restrictions on travel, closed borders. There are recommendations now which everyone's aware of around physical distancing, personal hygiene, washing your hands, wiping down surfaces and so forth which are just to prevent the spread of it. Of course, we closed things like schools and workplaces to reduce people's contact with each other. Importantly, testing and contact tracing remains an important part of this pandemic, so if someone is found infected, that they're isolated so they can prevent infection among others. So those are the main public health measures, so it requires everyone in the population to participate in reducing the spread of this virus.
Q. So, Professor Kavanagh, a public health response means that there has to be uniform rules and procedures across the country, rather than tailored for particular groups at particular circumstances; is that right?
A. Well, of course we're seeing in Australia now that we have different public health responses across the country which is based on the levels of community transmission. On the whole, we do need to have a fairly consistent approach across the whole population, yes, recognising that sometimes that's not possible for particular groups in the same ways and people with disabilities might be one of those groups where we need to think about how we can protect, have a good public health response while balancing individual needs.
Q. We've heard over the course of the evidence of the past two days that the uniform public health measures have had a greater impact on people with disability and in your statement you address, from paragraph 39, the increased risks faced by people with disability in COVID 19. So the first bit is a higher degree of risk for people with disability, but the second part is a higher and greater impact on people with disability with respect to the public health measures, and this has been part of the research that you've undertaken over the last six months in responding to COVID 19. So can I ask you, just in terms of the increased risks that you've set out in the statement, first of all, you've said that Australians with disability are an at risk population because they have many other health conditions. I think we've heard this expression, "co morbidity"; is that what that's intended to cover?
A. Yes, that's exactly what it's intended to cover.
Q. And the second is that people with disability, particularly people with complex needs, require personal support that puts them in close contact with other people. And so this is the point that a measure that might be applied across the whole of the community in relation to physical distancing might create a greater challenge for people with disabilities because it just may not be possible; is that right?
A. Yes, yes.
Q. And so if it's not possible, then the question is how can you either adapt or adjust a general rule to specifically deal with the needs of a person with disability if close contact is essential to managing complex needs? Is that right?
A. Yes.
Q. The other issue that you've identified this is paragraph 41 is that some people with disability live in group homes or attend respite services and many different workers will provide support to people living in these settings, sometimes moving between multiple homes and services, and you say the potential for spread of SARS CoV 2, it may be higher because of the wide networks and difficulty with physical distancing, with potential issues concerning personal hygiene. So this is something that we've heard some evidence coming out of the Aged Care Royal
Commission. Are there any similarities from what we hear about the issues in aged care for people with disability living in group homes or attending respite services?
A. Well, of course, we've got a very similar situation in terms of having a number of people living together and we have the same situation where we have people, the workers, moving between potential different settings like you said, and some of that may be they're working, say, in a group home but then they might also be providing support in the home. Or they might even, indeed, be working in a day program as well, where you have a number of people with disabilities together in that context. So the other issue which I think we'll come to later probably is the issues around the workforce itself and the casualised nature of that workforce.
Q. Yes.
A. But I think that those are the ways in which it is similar to aged care. Traditionally, not as many people in those settings, although we have seen in Victoria outbreaks in supported residential services which are somewhat bigger than group homes and often have people with mental health issues and intellectual disability. So that's another setting where there are dozens of people living in potentially at risk.
Q. Jumping ahead a little bit, one issue you identify in paragraph 46 is the lack of health care professionals with specific expertise in the health care of people with disabilities and low levels of existing skills in health care workforce related to disability and this places people with disability at a risk of poor health care if they're infected with COVID 19. Have you seen this how have you seen this work in the COVID 19 experience? Has the lack of expertise resulted in any particular outcomes in terms of health care for people with disability?
A. That's a good question and I don't know the extent to which that has been a problem, so, you know, I've had some anecdotal evidence, but I wouldn't I don't actually know the extent although it is a risk and particularly around assumptions around discrimination that people bring to their decision making and very early on, concerns about people with disabilities being de prioritised for care in the care sector. But also a recognition that sometimes issues like the hospitals not allowing someone else to accompany you into the hospital was a real risk for people with disabilities who might need someone else to help support them through that system. And here in Victoria there has been a directive that people with disabilities should be able to have someone accompany them if they want to through the health care journey, particularly in a hospital and so that's a good thing.
Q. One issue the Royal Commission heard in its hearing into access to health care services for people with cognitive disability earlier this year was the concept of diagnostic overshadowing.
A. Yes.
Q. Has that arisen in your research during the course of COVID 19?
A. I have to say I haven't actually researched people's interactions with the health system, so I wouldn't be able to comment on it. But of course we were very concerned that that may well be the case.
Q. Now, again, I'm going to jump ahead. At paragraph 71 this is page 13 of your statement you set out under the heading, "Key issues and themes", I think seven key issues. The final one includes your personal experiences and I'm going to ask the Commissioners to read that part of your statement, we won't deal with that today, so can I focus on the six key issues and I'll work through each of them. The first is you've said that you believe the response of governments was relatively slow despite the known potential risks for people with disability in emergency situations.
So that's the first issue. It's the case, isn't it, that on 16 March this year
A. Yes.
Q. you were part of a group of academics and researchers to write to government to express your concerns about government's seemingly inaction in relation to responding to the rights of people with disability; is that right? I can direct your attention to paragraph 51 of your statement, where I think you deal with this.
A. Yes, we did.
Q. So you made a number of recommendations in this first response. Do you want to tell the Royal Commission what prompted the Statement of Concern and what were the recommendations that you sought to raise?
Commissioners, a copy of this document appears in the tender bundle, in part D, the final volume at tab 97.
I don't need to put that one up on the screen at the present time, but you were identifying in that document that the health sector was under prepared to meet the urgent needs of people with disability. There was a concern about the disability service sector not being able to meet the care needs of people with disability, information was not accessible and you made two recommendations. The first was rapidly scaling up the health care sector's capacity to care for people with disability, and secondly, rapidly increase the capacity of disability care workforce to respond to the pandemic and its consequences.
With respect to that first Statement of Concern back on the 15th or 16th of March, did you receive any response from any governments in relation to those concerns?
A. I think it I sent the statement to the NDIA, the National Quality and Safeguards Commission and the Commonwealth Government at that time and relevant ministers and did receive responses acknowledging receipt of it and I did
then start to have conversations more broadly with people within the Commonwealth Department of Health at about that time, just after that time.
COMMISSIONER SACKVILLE: I'm sorry to interrupt, but I think Ms Eastman asked you also what prompted you to issue the statement? Would you mind responding to that question?
A. Thank you. Well, I was basically our group, the CRE in Disability and Health at the University of Melbourne are interested in the health of people with disabilities, so really, we saw that this was a perfect storm and that, really, the people with disabilities were at risk for the reason we've talked about and that we weren't observing a response from government in the same way as we had in the aged care sector at that point, and a plan developed for Aboriginal and Torres Strait Islander people. So we were deeply concerned at that point, that there was a lack of acknowledgement of the particular risks of people with disabilities and a lack of preparation for how we might respond to that problem.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN: The following week, a second Statement of Concern was issued, and that was on I think you've said in your statement the 26th
A. It's the 24th.
Q. I'll ask that that one will be brought up on the screen. Can I ask you, first of all, what prompted the issuing of this second Statement of Concern? Then I'll turn to the recommendations.
A. Well, we still weren't seeing the kind of response we wanted and we wanted to make some more specific recommendations to government about how they could respond to this situation, and from the previous response, other people had also pointed out some issues that perhaps we could have dealt with more in the first response. And one of the key reasons we were we pushed in this particular Statement of Concern was the need to establish some sort of expert advisory committee bringing the disability and health sectors together, advocates and experts from academia, clinical workforce and so forth, to rapidly mount a coherent public health response. So that was a one of the things that we were deeply concerned about at that time. We were worried that people with disabilities needed to think about health care planning, weren't getting information that was specific to their needs. There was little information at that time around whether they should be using personal protective equipment and there was also a lack of acknowledgement, I think, that the disability support workforce were actually essential services, as health care and aged care had been named as at that time.
Q. The document has two strong recommendations. Can I ask you about the first recommendation. Perhaps if we can just highlight that? It's the shaded box.
A. Yes, that we recommended that a committee is established, that National Cabinet establish a committee of expert advisors knowledgeable in disability and health services. I think the issue we'd been worried about all the long is that this is a public health emergency and that it needs a coordinated health and disability response. So they can't be siloed responses. Yes.
Q. So that was the sort of overarching recommendation and then you set out some detail in terms of recommendation for health care and people with disability and recommendation for the disability workforce?
A. Yes.
Q. All right. Now, in terms of any response from government to that Statement of Concern, it's the case, isn't it, that by 2 April, the Commonwealth set up an advisory committee?
A. Yes.
Q. Mr Cotterell from the Department of Health is the chair of that committee?
A. Yes, he is.
Q. He has said in his statement that the role and responsibilities of the committee are as follows:
The committee will provide expert advice to inform the development of the plan.
And that's a plan that will be the Management and Operational Plan for People with Disability.
A. Yes.
Q. So expert advice to inform the development of the plan on the health care needs of people with disability, their families and the disability service sector, including access to COVID 19 screening, prevention and health care, and secondly, to oversee the implementation. What can you tell us about the process of the development of the plan?
A. It was led through the Department of Health, but there was a lot of input from the committee and they led the writing of the plan but were very open and directed by the committee and also what the committee members were hearing from the community. So it was very much a collaborative effort and I would say they had many of the recommendations did come, for what should be done, did come from committee members.
Q. Do you feel that the recommendations and issues you had identified in the
Statements of Concern on the 16th of March and the 24th of March formed part of the development of the plan?
A. Yes, I do. Noting, of course, that one of the things about this committee is it was about the health care response and so in some ways, again, we have that issue where we have limitations in what that committee can do in terms of responding to the disability service sector. So it very much concentrated on the health care response. Having said that, there were representatives from the NDIA, the Quality and Safeguards Commission and DSS, as well as State Governments on that committee and questions that overlapped with other sectors were taken back to those relevant departments, but the plan was a health plan.
Q. You've remained a member of that committee and Mr Cotterell will tell the Royal Commission tomorrow that up till 28 July there's been 12 meetings of the advisory committee and a number of broader roundtables. So you've participated in all of those meetings?
A. I can't say whether I've participated in all of them. I think I've participated in the great majority. It would be either 11 or 12, but I may have missed one meeting, I don't I can't recall.
Q. One of the tasks of the committee is the implementation of the plan and I want to ask you this, because on 22 April, you published another piece of work indicating that the plan did not go far enough for people with disabilities in congregate settings and you've set that out at paragraph 55 of your statement. Can we take it that the concerns that you had about the plan and its application to people in congregate settings may indicate that you had some criticism of the plan in terms of the extent to which it covered people with disability in a range of settings. Can I ask you, were there other concerns that you had with the plan in its form, as at 17 April?
A. I think the main issue with the plan was more that it was, perhaps understandably at a very high level, and so how some of the things could be implemented were going to be difficult. And, again, this arises from the issue of having a plan where the commitment comes from everyone on that committee to the implementation of that plan. So my criticism there around congregate settings is that there wasn't enough direction, but partly the responsibility in terms of who makes those calls about congregate settings. I think there was still a lot of issues around access to PPE and a lack of clarity at that time around what the recommendations should be for that workforce and that took a while to resolve for that committee. So I think the plan could have gone further in relation to perhaps groups that were at higher, at particularly high risk, and people in congregate settings, but also the capacity for us to influence things like how do you pay the disability support workforce when they're sick? And how do you take away those kinds of questions. I think part of the issue with the plan was it wasn't clear where the roles and responsibilities for the implementation of those observations and actions were.
Q. But overall you've expressed that the fact that the plan was a positive measure
A. Yes.
Q. and it was welcomed at the time?
A. Yes.
Q. So you're not critical of the fact that a plan was developed?
A. No.
Q. But if you have criticisms it's really that the plan was brought together very speedily, but it needs to evolve and be responsive to the needs of people with disability as the pandemic continues; is that right?
A. Yes, and there has been a revision, one revision of the plan, and the plan's currently going under another revision and that latter revision reflects one of my concerns and others' concerns that we don't have a uniform response anymore across Australia, that in particular in Victoria, well, where there's high levels of community transmission, that the response will have to be different, and so we really need to think through how we have a plan that can move forward to deal with the fact that we're dealing with very different scenarios across Australia.
Q. I think the concerns that you raised about the congregate settings back in April, you've really seen come to the fore in Melbourne where there's much higher rates of infection and there have been outbreaks in congregate settings in Melbourne and we haven't seen the same level of outbreaks in comparable settings across the rest of Australia. What do you think is either the reason behind that, but more importantly, how do you respond to a more acute situation in Melbourne, and does the plan address that in any way?
A. No, no it doesn't at the moment and that's why it needs to be revised. Remembering, of course, that the response then becomes a State Government response as well. So there's a lot of players in this response, but of course the plan doesn't cover the current situation in Victoria and needs to be rapidly changed to do that. The congregate settings, like you said, that was my great fear in March in April and one of the things that I think we haven't touched on yet and it hasn't happened as far as I know were the settings like day programs and supported accommodation services as well.
Q. Yes.
A. And but there still remains a potential in those settings for high levels of transmission. Yes, unfortunately what I worried about in April has come to bear.
Q. Can I put this to you? The starting point of the plan in April was very much the
Commonwealth's response, but over the course of the pandemic, the plan itself has highlighted where there are gaps between what are matters of Commonwealth responsibility and powers and what become more localised response need from either State Governments, Territory Government, or even for that matter, local government areas and from your perspective, how do you manage this in terms of planning? As you know, we're only looking and our focus is the Commonwealth
A. Yes.
Q. but your work seems to highlight the fact that a pandemic itself doesn't say, "Well, this is the Commonwealth and this is the State", and work around it that way.
A. That's actually what I would like to say. To some extent I don't care whose responsibility it is, I just want them to work together and come up with the best response, because that's clear. Even the Commonwealth is slightly more complicated than you raised, because within the Commonwealth, it's the Department of Health, it's DSS, there's NDIS, NDIA and there's the National Quality and Safeguards Commission as players in this, and my point is that they really need to work very closely together to optimise the public health response and while protecting the rights of people with disability in the pandemic. Then at a State level you also have the Department of Health, but you also have and what we've seen in Victoria is where we've had group homes that still remain under the regulation of the State Government, and some that are NDIA and covered by the National Quality and Safeguarding Commission. So it is a complex situation, but people with disabilities really require those, all of those parts of government, to work very closely together and to rapidly develop their resources within their own States, but also I think the key thing now, and what we've seen in Victoria, is that they need to develop an emergency response strategy should COVID 19 break out, and that's only happened in Victoria in the last few weeks.
COMMISSIONER SACKVILLE: I'm sorry again, if I may ask a question. I think we can accept that coronavirus probably hasn't read the Australian Constitution, but I wonder whether anybody within this Committee, or in the deliberations you've been party to, turned their mind to whether the Commonwealth itself could take control of this entire problem?
A. The entire problem for people with disabilities or coronavirus?
COMMISSIONER SACKVILLE: Coronavirus, plus people with disability.
A. Well, I can't answer more generally. I mean, the National Cabinet, I think, and the Australian Health Protection Principal Committee was some attempt to do that at a Commonwealth level, but still ultimately, responsibilities around, say, public health directions and so forth remained a State responsibility. I think there has not been enough of that cross jurisdictional, cross government response and we are seeing some of that, the fault lines in that, arising in this pandemic. Yes, so I think while we sat around the same table we did sit around the same table and there was a
level of collaboration that perhaps I hadn't seen before I think it could go further.
COMMISSIONER SACKVILLE: Yes, thank you.
MS EASTMAN: Part of the concern about the escalation of the emergency in Victoria led to a third Statement of Concern that was issued on 13 or 14 July.
A. Yes.
Q. I might just call that one up, because this was a recommendation on a tailored COVID 19 response for people with disability. Can we bring that document up? If we turn to the next page, there are a number of recommendations here which start to address that problem of who has responsibility? So, who is in control, and one of the recommendations which you'll see highlighted in the shaded box there is that there needed to be some "immediate actions" taken and the first was the proactive community outreach to households and a suggestion that community workers could reach out to individual households to provide immediate care, and a range of matters that are then set out on the rest of that page as dot points. And the second was specific health care and social welfare initiatives that could include a range of measures to ensure that testing could be done for people with disability in an appropriate manner. The third recommendation, over the page, was the provision of disability services, and some of these recommendations related to the NDIA and the local area coordinators reaching out to all participants to assess whether an urgent plan review was required, and you also make some recommendations about the Victorian Government working proactively with the NDIA and the Quality and Safeguards Commission and a range of dot points there. And then the final recommendation was in relation to the health of children and young people with disability returning to education.
A. Yes.
Q. So these are very specific recommendations which were prompted by the acute situation in Victoria. Professor Kavanagh, for us reading these recommendations, it seemed that there needed to be planning for when emergencies became acute and localised?
A. Yes.
Q. And they reached a point where that localised I think some of the words used are "clusters" and "localised areas", but there needed to be quite detailed emergency planning where there were very high rates of infection and if the lockdown Stage 4 situation that we now see in Victoria spreads more generally around Australia as a mechanism to address the ongoing infection, you have to have very, almost bespoke
A. Yes.
Q. responses. That was my understanding of reading this material. Like, even getting to the level of school staff being trained in particular degrees of infection control, or how families would look to individualise plans and matters of those kinds.
A. Yes. I think what Melbourne has shown and continues to show is that you can't have a one size fits all approach, but I also think this emerged after we saw the outbreaks in the Housing Commission flats and we were worried about people with disabilities living in those Housing Commission estates, and one of the things we were also worried about is to some extent we concentrated a lot on NDIS participants, but there were a lot of people living in these settings that weren't NDIS participants and we didn't know who they were and we didn't necessarily have a plan for each of those people as to how to support them if they have to isolate, as they were in the Public Housing estates, in quite small environments. There were many people sometimes in one flat and so we were very worried about the immediate health and social welfare needs and some of that doesn't relate to their risk of COVID 19. Some of that relates to mental health needs, whether issues around people being socially isolated leads to an escalation of behaviours of concern and exposes people to risks of abuse and neglect.
The other issue I think that's become very obvious for me, and it's also obvious in terms of the response to people from culturally and linguistically diverse backgrounds, is that it's all very well to produce easy read material and so forth and put it on a website, but that doesn't mean that someone's going to get it, and so I was deeply concerned that people weren't actually getting the information they needed, and so believed that a much more proactive community outreach approach was needed, and in some instances, that would require actually door knocking. So we were terribly concerned at that point that people were being left behind in that response and so that's why we made those suggestions.
We also wanted to ensure that testing was accessible, recognising that some people couldn't necessarily go to a testing site, and we've now seen only in the last week or so, the possibility of in home testing. Saliva testing doesn't seem to be taking off, for a variety of reasons, I think. So it still remains a challenge for testing and, yes, I think we really believed the need to think very carefully about people in Victoria, particularly those living in very disadvantaged circumstances who had a disability.
The school settings continue to be a concern. I was particularly worried, for instance, when children were going to special schools on special school buses and the potential for them, many of them sitting next to each other. Some of them, you know, 17 and 18 year olds, so effectively the same as adults, issues around personal hygiene and that continues to concern me. It's been an issue I've raised a number of times with the Education Department. So I think and again, infection control in a school setting being particularly difficult potentially in a special school setting, where issues around some of the children, young people in those settings, having finding it difficult to either understand the information or comply. So "comply" with personal hygiene recommendations.
Q. Can I move to the second issue that you identified and it flows from what you've just been saying and that is the issue about the availability of data and transparency in data. So you've identified this in paragraph 72 of the statement and deal with it in a little more detail in paragraphs 89 to 100. Can I ask you this: do you know how many people with disability have been infected with COVID 19 since 22 January?
A. No, I don't.
Q. Do you know how many people with disability have died because of a corona or COVID related illness since 22 January?
A. No, I don't.
Q. Do you know if there is any data that would be available to the Royal Commission that would tell the Royal Commission how many people with disability have been infected with COVID 19 or who have died as a result of the virus?
A. There I think this is where there is a major issue. So the only data that I'm aware of at the moment is the data reported to the National Quality and Safeguards Commission where services have reported cases to the Commission and I should point out, we also would want the cases amongst the disability support workforce as well. It's a terribly important number to have, to understand transmission. Some services will be reporting that. To my mind, I'm not clear that they are getting a full count of everyone. It's reliant on the services reporting and some people won't necessarily use NDIS registered providers. So that deals with people who are in the NDIS. But then you have people who aren't in the NDIS, or you have people who are in State funded, you know, group homes and so forth. My understanding is the Victorian Government is starting to get that information. I think it's very hard to know who's been infected in the community and certainly not in relation to people who aren't in the NDIS or in a group home setting. So there is no routine data collected about people with disabilities. There's no routine data collected on the support, which makes it very hard for us to know the extent of the problem.
Q. I think you say in your statement at paragraph 94 that:
It is clear that the data system infrastructure was not "fit for purpose" for tracking infections among people with disability and their workers.
That remains your view?
A. Yes, and I think that reflects something the Commissioners probably dealt with all along, is the lack of good data collection in disability in any administrative data set, and this makes it you can't you're in a situation there where you haven't got routine data collected; you haven't got a commitment to collecting disability data in any data sets. People are trying to make up what to do in an emergency situation, which we shouldn't be having to do. It should be part of any system.
Q. The third issue
COMMISSIONER SACKVILLE: Again, I apologise for interrupting. This may be obvious, but would you mind just explaining briefly why data is so important?
A. I without having information on who's being infected and who's being infected who have disabilities, without knowing whether the workforce is being infected, we don't know the scale of the problem. We also don't know how it's being transmitted, which is terribly important in working out, how do we intervene? If we know, and if we know that there is a lot of transmission happening between workers and people with disabilities, then we know something is going wrong in terms of risk of transmission. You know, if we know that people living in group homes or going to day programs or working in supported employment environments are getting infected, we need to know that. We need to know what to do about those environments. Obviously, they're not safe places in terms of transmission risk. I can't underscore how important it is for us to understand what's happening and I also think it's an accountability issue. We need to know. It's an accountability issue to the public, to people with disabilities, and it's an accountability issue for governments in terms of how well they are protecting people with disabilities in this pandemic.
COMMISSIONER SACKVILLE: I take it that the people who tragically have passed away in aged care homes, many of those would have had disabilities?
A. A large proportion of those would have had disabilities, a large proportion.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN: The third issue that you raise is the response of the NDIA and the NDIS Quality and Safeguards Commission and you identify this at paragraph 73 of your statement and elaborate on the issues at paragraphs 101 to 125. There seem to be three particular issues of concern in relation to the response of these Commonwealth agencies. The first is the extent to which they had the assistance of a public health specialist and they looked at issues from a public health response. So I want you to comment on that.
The second is directions to the service providers and I think it's your view that none of the service providers could have been expected to have had a plan in place to deal with the type of pandemic and emergency that we have faced with COVID 19, but what assistance has been provided to the providers, and in a sense a question that we've heard in the community a lot is, "Who is in control?" And then the third issue is the use of the NDIS funds and NDIS planning and that is an issue which is certainly picked up in the Statements of Concern that I've drawn your attention to a little earlier. Can we deal with the first issue?
The first concern that you identified is whether the Quality and Safeguards Commission and/or the agency had, or were equipped to deal with the issues from a
public health perspective? What would you like to say about that?
A. I don't think anyone was equipped and they did need it is a very specialised kind of response. This, as we've said, is a 100 year event. We were perhaps thinking if services were thinking about pandemic plans they were thinking about influenza not SARS CoV 2, not what we're facing right at the moment. So I don't think you can expect an agency or a commission that has no background in public health to be able to rapidly scale up their internal skill set to be able to deal with a public health response. I can't comment, because I don't know the Agency or the Commission, the extent to which they did bring in some of those skill sets, but I think it remains a very important recommendation of ours that they rapidly scale up their capacity in relation to a public health response and work closely with public health, people in public health in the Commonwealth and States.
Q. Right. And in relation to the service providers, you say in your view the approach of the Quality and Safeguards Commission could have been more directive about whether services and supports continued to be provided to individual service providers, rather than sorry, rather than the individual service providers making that decision. So you had a concern about the response for service providers might have created incentives for service providers, for example, to stay open or continue to provide services, but that lack of direction for service providers to make a decision as to whether to continue or not.
Can you just assist us, in terms of what those concerns were?
A. So the Quality and Safeguards Commission did reach out to services and provide them with information, but it was incumbent on the services to make the decision as to whether they could continue to provide the service and particularly, in this context I'm talking about day services and supported accommodation services supported employment, sorry. I'm not talking about group homes, because obviously you need to continue to provide that service. And also making sure so to come back to your question I do believe that if you're thinking about a public health response, that you do need directives because essentially that's what we've done throughout the pandemic. Everyone's been told how many people you can have in your house, and it's not up to you to decide whether or not you're going to let more people into your house.
So I think we've done that across the board, really, so we need to think about ways we could have done that better in the disability service sector. It's not easy and I'm not saying it's easy to close a day program, or it's easy to close a supported accommodation service. I don't think it's easy, because other people you know, people rely on those things, but I think there needed to be much more guidance and much more working with providers to think about alternative ways to provide supports.
Like you said, the financial incentive was there, particularly as the response was to give providers 10% more to continue to provide a service. So it's very difficult then,
you know, you're financially dependent on providing that service to maintain your financial viability and some services don't have the capacity to rapidly shift to a different way of providing that service, so people would need to go to different service providers in those instances.
Q. You've said in paragraph 119 of your statement that in your view the 10% loading created a perverse financial incentive to stay open. You also recognised the additional costs of service provision during COVID 19, but you say there needed to be other ways to support services when they needed to cease activities or programs.
Do you want to say anything more in terms of what you raise as a concern about the perverse financial incentive?
A. No, I think I answered that before. I think there is a perverse financial incentive. I do think there needed to be some funding to services to be able to rapidly skill themselves up in the public health response. I don't think that needed to be linked to service provision. I think that was the problem, yes.
Q. The fourth issue was the coordination between different parts of the Commonwealth, but also between the Commonwealth and the States. I think we've covered that in the earlier questions. The fifth issue was workforce issues, and in early August, you were part of the research team that published a report, "Disability Support Workers, the Forgotten Workforce of COVID 19".
Commissioners, you have a copy of the report in the tender bundle part D behind tab 107. Perhaps if we could just bring that up on the screen. There's some infographics in that report which are the fact sheets, if we can have those pages?
There was a survey undertaken in relation to people who are in the disability support worker industry; is that right?
A. Yes.
Q. And the result of the survey came back with a range of results and we've got them on the infographics, but can you just take us through what the key results were for this particular workforce?
A. Okay. I think the key results of this workforce is that we found that at that point in time so this was done in June that there was still about a quarter of people who hadn't even done an online infection control training module in the disability support workforce, and those that had, 50% nearly half of them actually wanted more training, didn't feel like they were properly prepared. So I think that so this is basic infection control training, this is basic personal hygiene and physical distancing and so forth. So I think that, to me, pointed out the fact that we didn't have a confident workforce and also that the use of PPE at that time wasn't recommended. As we know, that's changed in Victoria now so that support workers are wearing masks and so forth, but at that time there was quite a lot of concern that
support workers should be using some PPE and some services had actually acquired those and people themselves had actually acquired them. I think the other issue was the issue around support workers who did decide that they didn't want to go to work, because they had symptoms
Q. Just pausing there. We'll get that graphic up. That's on page 0088, so two pages along. In the top box is the results of the survey on testing for COVID 19.
A. Yes.
Q. This is quite a concerning finding, isn't it?
A. So 23% were tested and 11% wanted to be tested. Some of the reasons they wanted to be tested were they didn't actually have symptoms, they were concerned about their risk as a disability support worker and passing that on to the people they were supporting, but others were, at the time they went for testing, disability support workers were not recognised as an essential workforce like health care and aged care workforces so they weren't prioritised for testing at that point in time, which I think is pretty terrible and something we had been recommending from the start. I think there actually was some misunderstanding of the testers, but also miscommunication from government regarding them being a priority group for testing.
Q. Can we go back a page on the infographics, because I want to ask you about the physical distancing
A. Yes.
Q. but also the infection control. So the survey found that 90% of workers were not able to maintain physical distancing in their day to day work and 53% so this is just up the top there provided support with tasks that involve very close personal contact such as feeding and brushing teeth.
A. Yes.
Q. So the consequence of these findings also prompted you to ask the question about the infection control and what PPE was provided to the support workers. So if we go further down that page, you've addressed the level of training for infection control
A. Yes.
Q. but I just want to go to the next issue. So that's the results on infection control. The next issue was the PPE and so 64% of disability support workers had received or purchased some form of PPE?
A. Yes.
Q. Then in terms of the PPE, the infographics set out where the equipment was provided by the employer, or where the worker had provided. Does this suggest that in some cases the employer was providing, but in other cases, that the last line of worker provided, these were the workers themselves obtaining PPE?
A. Yes, yes. Yes, and some of them may have bought it themselves and got some from their employers, but yes, there were still a significant number of workers purchasing gloves and masks in particular.
Q. This might seem very simplistic from my part, but why hasn't there been a national approach to ensuring that every disability support worker can be supplied or has been supplied with appropriate PPE? If you have a look at the demographics of the disability support workers, the majority are women and they seem to also be an older cohort themselves. You've identified in the infographics that 7% of workers are over the age of 60, and 31% are over the age of 50. Why hasn't there been an immediate response to ensure that all disability support workers can have a guaranteed access to PPE?
WITNESS SCREEN FROZEN
MS EASTMAN: Perhaps could we have a very short adjournment just to ensure that we can organise for Professor Kavanagh to come back on? I'm almost complete. I have about three questions to go, but I would like to complete Professor Kavanagh's evidence.
COMMISSIONER SACKVILLE: I think that would be highly desirable, so we will take a short break. Thank you.
ADJOURNED [10.39 AM]
RESUMED [10.44 AM]
COMMISSIONER SACKVILLE: Yes, Ms Eastman, we've managed to recapture Professor Kavanagh.
MS EASTMAN: I can see Professor Kavanagh has moved locations, so thank you very much for that.
I think I was asking you just about the workforce issue and about whether one might have expected by this stage of the pandemic, and particularly given the situation in Melbourne, whether and why all disability support workers haven't been provided with PPE?
A. I just want to point out the survey was done in June and we're actually about to go back and resurvey the workforce in the next week or so, so I imagine we'll get slightly different results at that point in time. I think there were a number of issues early on which was there was actually not sufficient PPE in Australia and so the initial guidelines were did not include masks and so forth. I also think there is now increasing evidence about the importance of masks in preventing transmission. So, ideally, I think it would have been better to have the workforce wearing masks from the start, but that wasn't the case and I really welcome the new recommendations for greater PPE. But when we're talking about PPE, if you don't mind me just kind of going to my other concerns around PPE. So, you know, at a basic level masks need to be used and we're all learning how to use masks and there's some people that won't be able to use masks, who have disabilities. That's one side of it, but when we're talking about the workforce, what I'm incredibly concerned about is that they are in a COVID positive situation or someone's either got COVID or they're suspected to have COVID and they have to use full PPE which means gowns, goggles, masks, gloves. And that's actually highly technical skill and we've seen in the health care workforce cross contamination in the health care workforce all across the world. And we're talking about support workers needing to suddenly learn how to use full PPE. The risk of cross contamination is high and you can't learn that off of a video. There's just no way, I believe, that you can learn how to use adequate full PPE off a video. You need training and in the case where there's a COVID positive environment, you need health staff working alongside the support workforce to enable the support workforce to stay safe and for people with disabilities to stay safe.
So I think there is a real need to think about that and I don't believe you can leave it on services to make sure that their support workforce is trained to do this.
Q. The sixth issue was NDIA and I think we've covered that again in the course of the discussion this morning. Can I ask you this: looking at the situation at the present time, so we're now mid August, what are the immediate needs in the sense that the Commonwealth, in particular, needs to address, and to the extent that there are issues touching on a State response, what are those immediate needs?
A. Okay. So one immediate need is to have a workforce. Services could lose a large proportion of their workforce quite quickly if there were particularly smaller services and aren't in a position to upscale. So we need to make sure we have that surge workforce and
Q. Just pausing there. In terms of having a surge workforce, I think we've heard about "surge workforces" in the context of aged care
A. Yes.
Q. but are you talking about a workforce that is a surge workforce specific for disability, or a surge workforce that is a health response?
A. Both. So I think we need a surge workforce that's a health response, so we need to make sure that we have a health care workforce that can work with the disability support workforce and we need to be able to rapidly deploy that, within an hour. You know, like it can't take two days to get that workforce mobilised.
Q. Who should have responsibility for that? Should that be localised at a State or local government level, or reflecting back on the question the Chair asked you earlier, is this an area where you expect the Commonwealth to take the lead or have the primary responsibility?
A. I think you would expect the State to be able to identify their workforce, but with the Commonwealth, the Commonwealth needs to take leadership across the States on what an ideal disability emergency response would look like, I think, and then work with the States. Now we've learnt from Victoria. We've had to do that pretty quickly and so now each State around Australia needs to be doing that and I think that's something that we should be working on at a Commonwealth level as to what that would look like. How would that look like in terms of best practice? And resourcing the States to do that in collaboration with the relevant Commonwealth agencies.
The other issue I think that's incredibly important and which we'd seen in aged care is restricting people's, workers' movements between settings. So at the moment, and in our survey you might note that a number of people were working across multiple settings and in the pandemic, in fact, some workers told us that, you know, like I said, some services closed, like day programs. They actually started working across multiple, multiple group homes, because the residents were home more. In fact, that's a real issue, and some of them work for multiple service providers and some work in aged care. So we have a perfect storm there and we really need to think through how we can do minimise movement of workers so they're only providing support for a specified number of people.
And that requires much greater collaboration across the sector, because some services are smaller and don't have the capacity to do that. Support workers may end up losing income, which we have already seen in the pandemic, and we need to make sure that they don't suffer financially because of that. But I think it's really critical when community transmission is high that we think through how we reduce the mobility of that workforce.
Q. I jumped in and asked you some questions about the responsibility for such a workforce. I think we were dealing with the immediate needs and actions; is there anything else in addition to workforce issues?
A. Can I mention one more thing around the workforce? I think we need to guarantee paid pandemic leave for that workforce. It's an absolute must and so they don't come to work sick. Sorry, your other question was sorry?
Q. Just on the areas of immediate need. So given the issues you've raised over the course of the pandemic stemming back to mid March, and I think you've said in your evidence many of the concerns that you've raised have been acted on, Government has responded to them. I suppose I'm trying to do a marker now at this point in time in mid August; what is either remaining, or what are the immediate needs because of the changed circumstances?
COMMISSIONER SACKVILLE: Can I put it another way that supplements what Ms Eastman has asked? What would you like us to do?
A. What I would like you to do?
COMMISSIONER SACKVILLE: Yes.
A. I would like you to recommend that there is a rapid scaling up of each State's capacity to respond to COVID positive situations, a rapid scaling up of the workforce, more support for the disability services, not leaving the onus on them to ensure that they're providing safe services; more direction on when it's safe to provide particular types of services and what they should do; greater outreach into the services themselves and to the workers. People aren't talking to the workers. This is all conversation happening at a higher level. People aren't talking to people with disabilities. That conversation needs to start to happen so we come up with on the ground solutions. I feel very strongly that there's a lack of understanding in the health sector about what happens in the disability sector and there's probably a lack of understanding in disability about what a public health response is.
And so I would really urge you to reach out to make sure that services can continue to be provided, but are done safely so that they protect people with disabilities and the workforce and there are a range of ways that that can be done, but there needs to be leadership and there must be emergency responses that can be rapidly scaled up. And we saw here in Victoria when we first saw outbreaks in group homes, that we were not ready to scale up that response. So there's a lot to learn from Victoria and we should learn it.
MS EASTMAN: I think, just given the time, those are the questions that I wanted to ask you. The Commissioners may have some questions and then, Commissioners, I'll come back to you on the planning for the rest of the morning.
COMMISSIONER SACKVILLE: Thank you, Ms Eastman. I'll ask Commissioner Bennett first.
QUESTIONS BY THE COMMISSION
COMMISSIONER BENNETT: Thank you, Professor Kavanagh, for appearing today. The issue that I'm trying to understand, or the feasibility of it, goes to your
proposition that you would have nursing staff working with support workers when the health system itself was trying to recall nurses, there was a shortage. I note that you also say there's sort of different models where there's "train the trainer", so the real outcome is that there's proper training. It doesn't necessarily have to be delivered by medical staff if there is pressure on having enough medical staff in our health system; is that right?
A. Well, I think I don't know that the nursing staff would need to be there the whole time. I think they could be there early in the response to make sure everything's going well. I do think there are train the trainer models that could be used. I think we have it is difficult. The other possibility is using later year nursing students for instance, but also bringing in a workforce from interstate, which we have seen happen in some situations.
COMMISSIONER SACKVILLE: Commissioner Galbally?
COMMISSIONER GALBALLY: Thank you very much for your evidence. Are there other countries where they've done this better and actually brought health and disability support workers together?
A. Not that I know of, unfortunately. I actually know of the appalling situation in the UK, so I could tell you how bad that has been, but I'm not aware because I work with colleagues in the UK I'm not aware with where there has been good responses. You've made me think, though. I'm going to look for it.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: I also want to thank you, Professor Kavanagh. You've covered an enormous number of areas in your statement and in your evidence. When Ms Eastman asked you about urgent steps, immediate steps to be taken, you didn't mention the compilation of data. I take it that will be one of the areas that you would like to see action taken as soon as possible?
A. Yes, absolutely ASAP.
COMMISSIONER SACKVILLE: And who would do that?
A. Well, I think that's the question, isn't it? I think it needs to be collected at the time when we're collecting information about the infections, because again, like I said before, the NDIS only has some people and some participants and they don't the Quality and Safeguards Commission doesn't have oversight of non NDIS registered providers. You know, there's a whole lot of situations where you're going to get an incomplete picture with just using Quality and Safeguards Commission data. That's important, but it's only some of it, so we need it collected at the coal face in terms of when we're recording infections, we need to know whether the person has a disability and we need to know if someone is a disability support worker as well.
COMMISSIONER SACKVILLE: Yes, thank you for that. You may not have seen this, I'm not sure, but there was a media release from the Minister for the NDIS yesterday which announced that the Commonwealth will commence providing data on infection rates of COVID 19 for NDIS participants and workers have you seen that media release?
A. No, I haven't, I missed that media release.
COMMISSIONER SACKVILLE: The media release indicates that, cumulatively, since March 2020 there have been nationally 86 participants, 145 workers who have been positive for COVID 19, but I just want to understand the significance of this material. I take it this is material that's been collected since March but just hasn't been published, so it's now being published?
A. Yes, obviously. It's now being published, yes.
COMMISSIONER SACKVILLE: And the figures for the reasons you've given are very likely to be incomplete?
A. I would say I think they're an undercount.
COMMISSIONER SACKVILLE: And when we talk about people on NDIS, we're talking about people under the age of 65?
A. Yes, yes, of course.
COMMISSIONER SACKVILLE: Yes, all right.
A. And we're talking about 10% of people with disabilities.
COMMISSIONER SACKVILLE: Well, I think we saw the figures, 360 odd thousand people are on the NDIS, people with disability, 4.4 million people with disability in Australia, 2.4 million people under the age of 65 with disability.
A. Yes, exactly, so we are missing out on a lot of people there.
COMMISSIONER SACKVILLE: Thank you. Professor Kavanagh, I'd like to thank you very much indeed for the statement that you have prepared, the evidence that you have given. It is enormously helpful. We very much appreciate it. Thank you.
A. Thank you.
THE WITNESS WITHDREW
MS EASTMAN: I've finally got to that point where our timetable is a little out of the shape that I wanted it to be in, so I apologise to our two witnesses who were waiting to give their evidence before 11. If it's convenient to have the morning tea adjournment now till quarter past or just after quarter past 11 and we'll resume with Dr Meltzer from Sydney. At that point I'll hand over to Brisbane, and my apologies to our colleagues in Brisbane for this morning's arrangements, but I think we'll still be able to get through all of the evidence today, but there may be a smaller breaks throughout the course of the morning to just accommodate the witnesses as they're coming through.
COMMISSIONER SACKVILLE: We'll resume, then, at 11.15.
MS EASTMAN: Thank you, Commissioners.
COMMISSIONER SACKVILLE: Thank you very much, Ms Eastman, we'll adjourn until then.
ADJOURNED [11.01 AM]
RESUMED [11.16 AM]
COMMISSIONER SACKVILLE: Yes, Ms Eastman.
MS EASTMAN: Commissioners, there is also a statement provided to the Royal Commission from Professor Julian Trollor. You'll provide a copy of Professor Trollor's statement in part B of the tender bundle behind tab 34 and there are some annexures to the statement. They are to be found in tab D sorry, part D, tabs 123 to 125. Could I ask you to mark Professor Trollor's statement as exhibit 5.36 and the annexures 5.36.1 to 5.36.3.
EXHIBIT #5.36.1, STATEMENT OF PROFESSOR JULIAN TROLLER
EXHIBIT #5.36.3, ANNEXURES TO PROFESSOR JULIAN TROLLER'S STATEMENT
MS EASTMAN: I don't propose to deal with Dr Trollor's evidence in any detail, but I'll just draw Commissioners, your attention to paragraph 20 of his statement, where he says:
In my opinion, this situation and he's talking there to the advisory service
calls and a knowledge bank highlights a current lack of ability to rapidly collate, catalogue and approve information for distribution to relevant parties for their use across all jurisdictions. This approach requires the ability to work locally at a State and Territory level and national jurisdictions to ensure that resources are available, readily shared and not duplicated.
So Professor Trollor has indicated a number of concerns of a similar nature to those identified by Professor Kavanagh. Commissioners, if you'd take that evidence into account.
COMMISSIONER SACKVILLE: Thank you.
MS EASTMAN: Can I move then to our next witness and my apologies to Dr Ariella Meltzer who I know has been waiting to come on for a period of time, and she's our next witness. You'll find a copy of her statement in tender bundle part B behind tab 24 and she has a number of annexures, one at tab 25 and then in part D of the bundle at tabs 111 to 122 and I'll ask you to mark the material as exhibit 5.31, and then 5.31.1.
EXHIBIT #5.31, STATEMENT OF DR ARIELLA MELTZER DATED 7 AUGUST 2020
EXHIBIT #5.31.1, ANNEXURES TO DR ARIELLA MELTZER'S STATEMENT
MS EASTMAN: Could I ask the Brisbane hearing room to go on mute? It will be marked 5.3.1.2 and 5.3.1.13. Thank you.
I'm sorry, Dr Meltzer. Thank you for joining us.
COMMISSIONER SACKVILLE: Dr Meltzer, I also am sorry for keeping you waiting, but I'll ask my associate to administer the oath or affirmation, please.
ARIELLA MELTZER, AFFIRMED
EXAMINATION BY MS EASTMAN SC
MS EASTMAN: You are Dr Ariella Meltzer?
A. Yes.
Q. A
nd you're a Research Fellow with the Centre for Social Impact at the University of New South Wales?
A. That is correct.
Q. You've prepared a statement dated 7 August; are the contents of that statement true?
A. They are.
Q. Can I start with a little bit about your professional background. As you've said, you're a research fellow at the Centre for Social Impact at the University of New South Wales and the research centre is a national research and education centre dedicated to catalysing social change for a better world. You have been a number of the centre since June 2015; is that right?
A. Yes.
Q. And you've done other work as part of the University of New South Wales in a research capacity since May 2010?
A. Correct, yes.
Q. Your research focuses on research with disadvantaged groups, gathering lived experience information to contribute to research and evaluation to improve the functioning of social purpose sector and address complex social problems?
A. Yes.
Q. The nature of your research methodology is what? I know you've set this out in the statement, but can you help the Royal Commission about the approach that you take to research, given the particular focus that you have?
A. Absolutely. So I do mainly qualitative research which is based on talking with people and gathering information based on what they say. In particular, in my disability research, I focus on using accessible research methods to ensure that as many people as possible are able to contribute to the research process in a way that is meaningful to them. In most of my research, this means using easy questions that are straightforward for people to understand and answer in their own language. The level or pitch of the language will vary depending on who I'm speaking to and sometimes I'll also use other accessibility tools in the research process, such as the pictures that you might see in Easy Read information and I've also done some research, for example, that has used Auslan interpreters in interviews.
Q. Now, the Royal Commission has heard over the course of this hearing, the importance of information and the importance of information being in an accessible and appropriate form. So it's easy to say there should be accessible information, but
in your statement, you explain to the Royal Commission what is accessible information. Can I ask you to address those matters.
Commissioners, you'll find these matters set out at paragraph 10 through to paragraph 14 of the statement.
A. Absolutely. So in a really plain English definition rather than a technical definition, "accessible information" refers to information that can be used and understood by people with disability, because it appropriately accommodates their support needs. There are different types of accessibility that information might conform to, so some examples are that visual accessibility or print accessibility are where documents are made in a way that's accessible to people with low vision. For example, it may use large text, wide spacing or certain sans serif fonts. Another type of accessibility is web accessibility, which refers to information being made technologically in such a way that it accommodates people's support needs. A really well known example of this is that images have alternate text behind them so that screen readers can read out a description of a picture. That's not the only component of web accessibility, but it's one good example. Web accessibility is governed by an international code.
Conceptual accessibility is another form. This means that information uses easy language and only the main points of information so it's easy to understand. Common formats in Australia are Easy Read and Easy English and another really important example of information accessibility at large is translating information into Auslan.
Q. The approach that you take in your work, it's also informed by the fact that information accessibility is a human right and you've referred to Article 21 of the United Nations Convention on the Rights of Persons with Disabilities, about the nature of the right to information and communications being provided on an equal basis. So that also informs the approach that you take in your research; is that right?
A. Yes. It means that, fundamentally, information being accessible is something that needs to happen in research and in society at large and as we'll discuss today, in situations such as COVID.
Q. Let's get to COVID 19. You have undertaken some research with the onset of the COVID 19 pandemic. You've identified that one of the significant issues for people with disability was accessibility to key health information and information that may impact upon people's day to day lives and you've said in your statement that having access to good quality and up to date information in accessible formats might be quite literally a matter of life and death. So knowing what to do, where to go for help, what the safety rules are and people with disability being in serious or imminent danger, that there needs to be accessible information.
A. Yes.
Q. So the approach that you took to your research was, in the early days of the crisis, you started to compile a list of information on the virus that claimed to be accessible for people with disability and can you tell us that the work that you did between March and late May, what were the results of the exercise of compiling a list and what did you find?
A. Absolutely. So I compiled that list between March and late May 2020. I didn't use a systematic approach for that search, so there are some limitations to it from a research perspective. However, the approach that I used was observing what accessible information came up in my social media feeds and in many ways that simulated the experience of a person with a disability and how they might locate accessible information in their everyday lives. The end result of the list by late May was that there was between 90 and slightly over 100 accessible resources on the list, depending on the way that they're counted, which is there were various ways that they were documented, and there was quite a variety of information on that list across various formats as well, which I can talk about if you would like a bit later.
Q. You've provided a copy of the list as part of your statement, but I won't take you through all of the list. But about the nature of the information, what came out of your research in terms of the 90 or possibly over 100 accessible resources? What were the features that you observed about the nature of those resources and the degree to which they were accessible?
A. Sure. There were a number of issues that came out of the list in terms of my observation of it, in terms of what it actually meant for the information to be accessible. So making information accessible is not simply about providing a resource, but actually thinking about issues such as the timing of when it comes out, how it's disseminated, who makes it and issues about the coverage of the information and the updates as well. I guess the underlying point is that in a fast moving crisis such as COVID, you really need to be thinking about all of those aspects to make your accessibility work well.
Q. One of the reflections that you had on undertaking this research was about what does accessible information need in terms of mitigating against the risk of the information not being properly thought out, not being properly designed and planned and becoming possibly tokenistic and not actually addressing the information that the reader, the viewer or the recipient might actually need. So you've reflected on that, and those reflections are addressed in your statement by identifying a few particular issues. So can I take you to those matters?
A. Yes.
Q. The first one was the issue of how quickly does accessible information come out? So how quickly is the information available? You observed that you started to see disability advocacy organisations putting information into Easy Read or other accessible formats and you referred in paragraph 24 to your statement to the "The Growing Space" and also some resources from the NSW Council for Intellectual
Disability and other groups and you say this was very useful and reassuring to see. They're the disability groups. What about from government and government agencies? Was there anything that you saw about the speed in which accessible information was coming from government?
A. Sure. So, when I first started keeping the list in mid March, most of the resources that were coming out were from the types of groups that you've just mentioned, disability advocacy agencies or specialist information access services. In terms of the resources that came out from government in that early period in mid March, the NDIS put out some early information about the implications of COVID 19 for its participants, for the way its services would function and for its support workers, but beyond the NDIS information, the other government branded easy information only came out two weeks later, at the end of March. That was from the Department of Social Services. While a two week lag in normal circumstances might not have much of an impact, in a fast moving crisis, two weeks is a long time. Particularly in mid March, we didn't know how serious COVID would be in Australia, we didn't know how fast it would escalate and people with disability who, as the Commissioners heard, really had some serious concerns about COVID, particularly at that time really needed that information earlier than it came out. The government, the Australian Government, was criticised in the media at the time for not having a timely public health campaign on COVID 19 in general, but more standard format information came out earlier than the accessible information did.
Q. Can I jump to another topic that you've identified, which is the extent to which accessible information is kept up to date?
A. Sure.
Q. So the Royal Commission has heard evidence that during the pandemic things are very fast moving, situations may change, a situation such as Victoria going into a hard lockdown, that information is required quickly and it's kept up to date. One of the risks that you've identified is that the information in an accessible format might not be kept up to date to address changes as they're occurring. What were the particular concerns that you identified in your research with respect to information being kept up to date?
A. Sure. Where accessible resources have been made in the past pre COVID, I think quite often what has happened is that one accessible resource has been made and then that is often what's there, if not for perpetuity, then certainly for a long time on that particular issue. That approach in a crisis such as COVID is not appropriate because the information continues to change; it continues to develop; the rules continue to change; the dangers to people continue to change as well. So there was really an imperative for the accessible information that was produced to come out much quicker and at a much faster pace than probably had ever happened for many people producing accessible information ever before.
What I noticed in keeping my list was that only some of the groups who produced accessible information on COVID 19 really updated their offerings or continued to constantly update their offerings during the time that I was keeping my list. Notably, the groups that did continually update their offerings are the ones that I would consider to be the very high quality providers of accessible information, in part, precisely for that reason.
The other thing I would note is that more progressive updates came from the specialist information access services and disability advocacy organisations than came from government in the Department of Social Services resources. Those were updated, there were updates from government, but they certainly didn't happen at the same pace as some of the other organisations, particularly when there were a lot of new social distancing rules being announced very progressively. It was sometimes on a weekly basis that some of the specialist providers such as Access Easy English who was providing the updated information after each round of new rules came out, rather than that specific information being provided in the government resources.
Q. The final question I wanted to ask you and you've covered this in some detail in the statement is the importance about who takes responsibility for the accuracy of information. So while some of the information might be information about rules coming from governments, who ensures that the information, if it's information provided to advocacy groups or other sources, who checks the accuracy and who is responsible ultimately for the accuracy of accessible information?
In paragraphs 55 and 56 of your statement you've made some comments about how accuracy can be maintained, but at the same time ensuring a broad reach of accessible information. Can I ask you to comment on that? That's my last question, and the Commissioners might have a few questions as well.
A. Sure. I think the issue of accuracy of information is very important. The issue around the accuracy of the information kind of pertains to two areas. So, on the one hand, you want high quality information that's accurate from a technical perspective of what makes it accessible, and on the other hand you want accurate information from the perspective of the medical and social or legal information included about COVID 19 and the legal requirements around it. And so there's two very different areas of expertise in there to constitute what will make accessible information.
I think the reality is that some collaboration is required to make information accessible and accurate. I think there needs to be collaboration between organisations who are making the accessible information, who are specialist providers of accessible information and know how to do it well. I think there needs to be collaboration with health and legal experts who can check the accuracy of the medical and legal information included. There also needs to be collaboration with people with disability who will use the information, who should also be involved in making it, including from a design perspective, as well as checking the quality of the information as well.
How to do that in a practical sense when there are timeliness issues, particularly in COVID, is a really difficult question. Collaboration takes time and quality checking takes time as well. And so how to balance those issues of how to make things accurate and high quality and also be timely is a challenge. There has been so far some collaboration where the Information IDEAS have been asked by government to run the disability information helpline which has a specific remit of distributing COVID information and I think that has been a very useful model.
I think in terms of ensuring this idea of accurate high quality information, there's probably the opportunity to further fund and resource that work and there's probably an opportunity to have a quality check system so that information can be checked and marked as high quality where it meets certain criteria.
I think it's also important, though, that the information continues to be disseminated by the original provider, potentially before it has the quality checks so that it meets that timeliness component, but when there is a notification that it hasn't passed a quality check approval, then that can be noted so that people can know where to find that information and maybe it's distributed by a central provider such as the disability information helpline.
I think what would need to constitute the remit or the characteristics of a quality check system is something that probably requires further research and evidence to know what to include there. An obvious contender would be that providers of accessible information need to be appropriately skilled and have undertaken training to do it and probably that it needs to be core business for their organisation.
However, beyond that, I think that there is a lot of scope for consultation and engagement with both the relevant information providers and people with disability who'll use the information to know what constitutes that, that high quality. I think a structure for enabling collaboration between those people to make it high quality is also important. So a structure for collaboration between information producers, medical specialists and people with disabilities is also important and may be separate to the quality check approach.
MS EASTMAN: Thank you, Dr Meltzer. Commissioners.
QUESTIONS BY THE COMMISSION
COMMISSIONER BENNETT: Did you examine accessible information that would go to culturally and linguistically diverse communities or First Nations people? And did you have any observations, if you did, any specific observations about that material?
A. I did not specifically examine that information. I focused my list predominantly, or exclusively on information that was appropriate and made
accessible for people with disability. There is some overlap, however. So, for example, some of the Easy Read and Easy English documents are used by people from non English speaking backgrounds as well, or who have low English literacy for other reasons other than disability. So there's some overlap, but it wasn't something that I examined specifically.
COMMISSIONER SACKVILLE: Commissioner Galbally?
COMMISSIONER GALBALLY: Thank you very much for that very important presentation. I'm thinking about your paragraph 55 and your discussion about people with disabilities being part of the making of the accessible information. Would that also include them identifying what information they wanted, as well as being part of the actual production of the information so that it's tailored to what they're likely to use?
A. Absolutely. So I think where people with disability are involved in a design process for information, that really needs to be from the beginning. It needs to be from saying what's needed, what form it needs to take, what will make it accessible for them and then involved in some of the logistics around making the information and checking that it does meet the quality criteria and I think that including people with disability right from the outset and having them drive that process is going to be really critical to making sure that people with disability get the information that they need.
COMMISSIONER GALBALLY: And would you say that should be for government, too, to build it into their production of information that's supposed to be accessible?
A. Yes. I think where information is made to be accessible, it needs to include people with disability in the production process right from the beginning, no matter who's making the information, certainly government and others, because the process will be richer and more accurate with their feedback and their capacity to drive what happens in a way that's going to be useful for them.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: Dr Meltzer, thank you very much for both your research work, the statement that you've provided and for your evidence today. Thank you very much.
A. You're welcome. Thank you.
THE WITNESS WITHDREW
MS EASTMAN: Commissioners, I'll now hand over to Dr Mellifont in Brisbane.
DR MELLIFONT: Thank you, and good morning. The next witness is Dr Dinesh Palipana. Dr Palipana's statement is at tender bundle A, tab 30. I ask it be marked exhibit 5.13. The associated documents are at tender bundle A, tabs 31 through 34. I ask they be marked exhibit 5.13.1 through to 5.13.4.
EXHIBIT #5.13, STATEMENT OF DR DINESH PALIPANA DATED 4 AUGUST 2020
EXHIBIT #5.13.1 THROUGH TO 5.13.4, ASSOCIATED DOCUMENTS TO STATEMENT OF DR DINESH PALIPANA
COMMISSIONER SACKVILLE: Yes, thank you.
DR MELLIFONT: Dr Palipana joins me in the Brisbane room having travelled from the Gold Coast this morning. May I ask that the affirmation be administered.
DINESH PALIPANA, AFFIRMED
EXAMINATION BY DR MELLIFONT QC
DR MELLIFONT: Could you state your full name please?
A. Yes, it's Dinesh Bandara Palipana.
Q. And you've made an 11 page statement dated 4 August 2020?
A. Yes, Senior Counsel.
Q. Are the contents of that statement true and correct?
A. Yes.
Q. You are obviously a doctor?
A. Yes.
Q. You're currently working as a senior house officer in the emergency department of the Gold Coast Hospital and Health Service?
A. I am.
Q. You're also a lecturer at Griffith University and a researcher at Menzies Health Institute of Queensland?
A. I am.
Q. In your spare time, you also managed to do a Bachelor of Laws from QUT and completed a graduate diploma of legal practice; is that correct?
A. Yes, I have.
Q. And you're busy preparing admission documents?
A. I am, Senior Counsel.
Q. Good luck with that.
A. Thank you.
Q. You've also completed an advanced clerkship in radiology at Harvard; is that correct?
A. Yes, I have.
Q. Amongst other things you are an ambassador for Physical Disability Australia, a member of the Inclusive Workplace Committee, Treasury, a member of the Ambassador at the Hopkins Centre and a member of the Scientific Advisory Committee for the Perry Cross Spinal Research Foundation?
A. I am.
Q. Okay, and you're here, though today expressing your own views, not on behalf of your employer or any other organisation?
A. That's correct, Senior Counsel.
Q. Now, you have a spinal cord injury?
A. I do.
Q. Tell us about that.
A. I suffered a spinal cord injury in 2010 as a result of a single motor vehicle accident. As a result of the injury, I have lost the use of all sensory and motor functions below the chest, as well as the use of my fingers and parts of my arms.
Q. And you use obviously a wheelchair for mobility?
A. Yes, I use a wheelchair for my mobility.
Q. From your medical training, you are aware of intrinsic physiological vulnerabilities that can increase the risk of complications and death from COVID 19?
A. Yes, Senior Counsel, and I can speak to them from my own situation as an example. As a part of the spinal cord injury, it was high enough that my respiratory muscles were also paralysed. Normally, a person uses the muscles in their chest to cough and breathe, for example. In my situation, all these muscles are paralysed and I use a diaphragm only in my body to breathe, and as a result, my respiratory function is significantly compromised. When the accident initially happened, I couldn't talk a full sentence like this to you, and was dependent on supplemental oxygen for a long period of time. There are other people in our community who are dependent on a ventilator 24 hours a day and have other respiratory compromises as a result of their disabilities as well, and this means that I and others like me have to be particularly cautious.
Q. Now, are you aware of instances where some people with disability delay presentation to hospital due to being scared of contracting COVID 19?
A. Yes, absolutely. The general community was afraid to present to hospitals during COVID 19 because they were scared of contracting COVID 19. In fact, our emergency department experienced quite a significantly reduced number of presentations at the height of the pandemic early on. I can speak about one particular friend who had a very complicated course through COVID 19 because of a complication related to their disability. This was very complicated due to some social situation problems that they had as well. This person had a very difficult set of social circumstances. They lived alone and some of the care agencies that were attending to him were also taking advantage of him before and during the pandemic. At the start of the pandemic, they became isolated from the community. Their access to caregivers was also reduced and they were afraid to present to a hospital to a mounting complication that they had. When they did present to the hospital, it was very late in the course of their problem and they ended up requiring intensive care for a period of time and they were in a very precarious situation as a result. It's arguable that if they presented to a hospital earlier and if they had more comprehensive care in the community, that this could have been avoided and their life may not have been put at risk.
Q. Can you tell us of your experience of working in a hospital at the start of the pandemic? You've already mentioned the reduction in numbers, but can you speak about the impact you observed on staff?
A. Senior Counsel, we often work in a stressful environment. Hospitals are a stressful place, emergency departments are a stressful place to work at a baseline and my colleagues do an amazing job every single day, but they see the toughest things
in life. They see assaults, they see death, they see suffering every single day. So the level of stress put on people is very high. COVID 19 increased that level of stress and we saw a significantly elevated level of anxiety. We saw elevated levels of stress and even conflict. Apart from patients that were presenting late due to complications from even things like appendicitis who required protracted courses of screening for COVID 19, even things like managing PPE, which was previously a very easy thing to access, became tightly managed. But all these things raised the level of stress enough where some of my colleagues around the world sadly had some tragic consequences, and we saw an increased level of suicides.
One of the most publicised ones was an emergency physician in New York who committed suicide during COVID 19 and this has also been the case in our country as well unfortunately. So the levels of stress and difficulties that people are undergoing were significant. Some of my colleagues were isolated from their families. They had kids, they had babies, they had elderly parents who they had to isolate themselves from, so all of these things made life more stressful than it already was.
Q. I want to move to the topic of health care rationing, which you've referred to in your statement. What is this?
A. Health care rationing is allocating a limited amount of resources to patients that require them. A very prominent example during the pandemic that came up in some countries is allocating a limited amount of ICU beds to more patients than there were beds. So far in Australia, we've been lucky and we haven't had this situation happen, but we have certainly seen it in places like Italy, and more recently, Texas.
Q. In Europe, are there guidelines for critical care in adults?
A. Yes, Senior Counsel. One guideline I can refer you to is from the National Institute of Health Care Excellence, or NIHCE and I must say that the guidelines that they developed for COVID 19 are not so "nice", in that if you look at the algorithm explicitly, they allowed the discrimination of people with stable, long term disabilities like cerebral palsy and even autism and intellectual difficulties. These guidelines called on decision makers to consider how frail a person is and if they were considered to be too frail, based on any of these disabilities, the guidelines suggest that you defer critical care for these patients. And after you defer critical care, if they suffered significant deterioration in their condition, to refer them to end of life care, whereas an able bodied person or an otherwise healthy person would not be referred to end of life care.
Q. And you're speaking there about the COVID 19 rapid guideline title?
A. I am, Senior Counsel.
Q. Has the Australian and New Zealand Intensive Care Society adopted the same approach?
A. No. We've also got in Australia some decision making tools for complex decision making during the pandemic and these guidelines call for respect among all patients and it asks practitioners to ignore unnecessary considerations such as race, gender, sexual orientation and disability. These guidelines also recommend prioritising people that experience social inequities in society and when allocating resources, to consider redressing those vulnerabilities.
Q. So those guidelines are the guiding principles for complex decision making during COVID 19?
A. Yes, Senior Counsel. I must add, though, even though these guidelines build some protection, we still need to be vigilant.
COMMISSIONER SACKVILLE: Dr Mellifont, I wonder if I might ask a question there? You've referred both to the NIHCE guidelines and ANZICS; which one is authoritative, or are they both authoritative? Which one takes precedent?
A. For Australia, Commissioner, we would go by the ANZICS guidelines.
COMMISSIONER SACKVILLE: When you say "we", you mean intensive care medical practitioners?
A. Sorry, we mean in the country. I'm not an intensive care physician, but intensive care physicians would.
COMMISSIONER SACKVILLE: Thank you.
DR MELLIFONT: Whereas the NIHCE guidelines have applicability in Europe predominantly?
A. Yes.
Q. So you speak about our guidelines here building in some protection, but do you still hold concerns that bias, whether unconscious or conscious, might come into clinical decision making in respect of treating people with disability in this pandemic?
A. I do. And I have spoken to intensive care physicians who say that who are amazing people and they say that they would do everything to make sure that people are treated with respect and equity. I have also, though, spoken to several people who are decision makers that are close friends and colleagues of mine who say that we need to give intensive care resources to patients who have the best chance of surviving. If you take me, a 35 year old with a high level spinal cord injury and a 35 year old without, and there's one intensive care bed, I can argue that I would have a poor chance of survival compared to the other person.
We often hear in medicine, for example, when we care for the elderly, I have sometimes heard the conversation, "Is this person a good 80 year old or a crumbly 80 year old?" The answer to this question can sometimes guide the clinical decision making and what care they get. In a similar vein, there's literature that people with disability experience unfounded judgments about their quality of life, and thus, the care that they get. I think particularly when a patient's ability to express their wants and needs and their intellectual capacity is limited, I worry about the risk that they're put at.
I more than once provided care for people with disabilities in my capacity as an emergency doctor who've experienced suboptimal care in the community by their caregivers. I've seen neglect and I've seen people come in with significant complications as a result of that neglect. And I think COVID 19 exacerbates all these risks for people. I've also seen this happen to people that I know.
Q. Do you have a particular example in that respect?
A. I mean, the example that I gave earlier about my friend suffering neglect is one. I have seen, I have had caregivers in the past that also care for other people and one particular day I spoke to a caregiver who had dropped a person in their home and when you don't have sensation below in your legs or elsewhere, you could easily fracture something and get into serious trouble, and this person was laughing about dropping that person. I've seen this happen all the time, and I've seen people come into the ED as a result of neglect.
Another story that I've come across recently was people there are people that are dependent on 24 hour care, or people that are dependent on care to go about their day to day lives. I am one of them. I require help from people every day to get dressed, shower, go about my activities of daily living and get to work. And a lot of people are dependent on transactional care by care providers. Now, if these I came across a story recently where people where a certain person was affected by some respiratory symptoms and these days whenever we have these symptoms, even a cold, people get a bit worried and, you know, sometimes they require testing, as well, and their care agency stopped sending caregivers. So how do these people survive, then, when they're dependent on care to even just get out of bed? They end up being neglected.
So these the situations that people can find themselves in and I think that, even for me, that's a risk. We have to even think about testing. When someone develops upper respiratory tract symptoms or fevers or anything like that, it is recommended that they test themselves for COVID 19 and it's actually one of the strengths of our country, is that we test so vigorously, but after being tested, you're supposed to isolate for a period of time until you get your result. So what do I do when I present for testing and I need help from someone to get to the testing centre; I need help from someone to get home, and then what do I do when I get home until the result comes? I've actually been tested twice so far and I've been lucky enough to get the result fairly quickly where I could just sit in a corner by myself. But if there are protracted
test results, I think people can run into some serious difficulties.
Q. And all of these things, as I understand your evidence, speak to the very clear need to ensure sufficient education of carers and medical staff to protect against any kind of conscious or unconscious bias in the care or medicine they give or administer?
A. Absolutely. I think the most fundamental risk that people face if things deteriorate is facing bias, and I have seen it and it's well documented in the literature as well. Apart from the bias, it's understanding the difficulties that people with disabilities face and having the knowledge to navigate that.
Q. I want to move now to page 6 of the notes. In the event that we are stretched to a resource limited environment, what's your hope?
A. I hope that (a) people with disabilities are treated equitably and have a good chance of accessing resources, and (b) that health care providers and health care institutions have the knowledge and resources in place to accommodate people sufficiently.
Q. Can I ask you this question: for some people, they have potentially acute consequences if they go without care for even one day?
A. Yes.
Q. Yourself is an example. For you, if you went without care for one day, what might be an acute consequence?
A. Absolutely. For example, I have I'm dependent on a catheter for urinary function. If that catheter gets blocked, I can develop a complication called autonomic dysreflexia. Before the pandemic, health care providers had a poor level of education on this complication, as it were. Some of the literature suggests that somewhere, even up to 48 to 90% of health care providers were not well versed enough on how to manage this complication. So if I was left at home, apart from basic needs like food, water, showering, if a catheter blockage happens or something else happens, I could potentially develop this complication and I know people who have died from it, because until you resolve it quickly, it just escalates and you can suffer a heart attack or a haemorrhage in the brain.
Q. Again, according to the need to ensure that support workers are available?
A. Absolutely. Support workers need to be available and support workers need to be educated.
Q. I want to ask you now whether you're concerned that strict infection control measures demanded by COVID may mean that some people with disability might not have access to equipment that they need within the hospital environment?
A. Yes. I think when you go into a hospital, the patients can be put in isolation and I'm dependent on my wheelchair, for example. Some people are dependent on communication devices like iPads or communication boards that they might carry around. Some people are dependent on walking sticks, hearing aids. We need to make sure that when a person presents to a hospital, that these bits of equipment are kept accessible for them, so they can at least communicate to them and that they're not removed for infection control measures.
I have also spoken to a person, for example, who has a hearing impairment and they're dependent on lip reading. Before COVID 19, they were at a procedure, a surgical procedure, and everyone was wearing a mask and this person was unable to communicate to their caregivers that they had a significant allergy and as a result, they had a really poor outcome. So with COVID 19, health care providers wear a significant amount of PPE and for someone dependent on lip reading or communication methods like that, this can be a significant challenge to sometimes get across critical medical information that might be life saving or threatening their life.
Similarly and, again, I'm not a person that is specialised in this area but there are people who are dependent on ventilators in the community. In hospitals at the moment, ventilation in emergency departments are approached very cautiously because there is some concern that ventilators and things might aerosolise virus particles and cause an expansion of air in these departments. For people dependent on ventilators in the community who might become affected by COVID 19 and would need to present to emergency departments, I think I would like to see some information, or at least consideration around that.
Q. So these issues in terms of ensuring that people with disability continue to have access to the equipment that they ordinarily use for support in the hospital setting speaks to you, to the need to make sure hospitals turn their minds to those things and develop plans in advance?
A. Absolutely.
Q. Okay. I've got a couple more questions before I hand over to the Commissioners. Can you share with the Commissioners a particular difficulty that you faced as a consequence of physical distancing rules?
A. I recently there are annual surveillance requirements that someone with a spinal cord injury has to prevent the risk of, for example, bladder cancer and kidney stones. So there are annual requirements of the urinary tract that must be carried out. Recently, I was required to get a scan on my bladder and I attended a radiology clinic to do that. When you are getting a scan at one of these clinics, you're required to move onto a bed to do that and it's not always that they have measures in place for someone to transfer onto such a bed. So I attended the clinic with two people so they could help me move onto the bed safely. When I came to the reception, the
receptionist told me that I can't have more than one person there and it was just too it was a very complicated process to have that one person that day to help me onto the bed. And when I told the receptionist that, they just told me that, "Well, that's just the way it is so you'll have to cancel your scan today." And they had no solution for me to get on the bed, and I think we have a population of people with disability that are already missing out on their regular care and regular follow up, because clinics are cancelled and access is more difficult, so that situation really showed me that the risks that people could run into.
Q. What specific research would you like to see done in the future, and why, to help people with pandemic, in circumstances of a pandemic such as this?
A. I'm involved in a spinal cord research project and we have collaborators across the world and across the country and we were looking for data around how COVID 19 affects people with spinal cord injury, for example. Apart from a couple of isolated case reports, there's not much data on how COVID 19 affects people with spinal cord injury and I think data is a really valuable thing. One of the things that would be great to see is more aggressive data gathering on how COVID 19 affects specific disabilities; not just medically, but socially as well, and I think gathering that data will allow us to build more research and better methods to protect people.
Q. And if there's one recommendation that you could make which could be implemented which would make a real difference to people with disability in a pandemic, what would it be?
A. I think we've talked about a lot of complicated social and medical issues that people face and there are so many different complications that we need to address. But I think that the most important thing is to look at this from a societal perspective. I think we've seen that the pandemic can be controlled and at least suppressed if we all gather round and do the right thing. I think the single most important thing that we could do is around messaging to our community. If we I think if we told an Australian, any one of our citizens, that if you sacrifice something little and if you sacrifice some comforts, you'll be protecting my friend who is ventilator dependent and you'll protect them and you'll allow them to have more years of productive life. Or if you told them that you'll be protecting someone's granddad so they could hang out a bit more with their grandchild, I think that kind of messaging would I would suspect that every Australian would stand up and protect the vulnerable people in this nation and they would carry out the measures that our governments have put in place.
So I think the single most important recommendation is to get the messaging out, that by doing the right thing we're protecting the most vulnerable people in our society.
Q. Before handing over to the Commissioners, can I extend my thanks to your mum for coming up with you today and her support of you and the Commission. I wish you all the very best with your admission, and hand over to the Commissioners, thank you.
A. Thank you, Senior Counsel.
QUESTIONS BY THE COMMISSION
COMMISSIONER SACKVILLE: Thank you, Commissioner Bennett? No, Commissioner Galbally.
COMMISSIONER GALBALLY: I want to ask you the degree to which you think that the inaccessibility of the health system has just been absolutely, you know, now really highlighted and that we always had a very inaccessible health system really. I'd like you to comment on that, if you could?
A. Yes, Commissioner, and that's a really good point. I'm involved in at least two projects at the moment. One looks at accessibility in hospitals and the other looks at accessibility in primary care and even things like pathology and radiology clinics. So these things are, funnily enough, very inaccessible to people with disabilities. And I think it's something that's been highlighted more and more. I should also point out that our counterparts in rural Australia face even more difficulties in accessing health care and they're more dependent, actually, on presenting to hospitals for even the simplest of things.
If you have a spinal cord injury, it's far easier to live in metropolitan Australia than rural Australia. So I think those inaccessibilities are more amplified. Funnily enough, I have a medical colleague who uses a wheelchair, that was based in NSW, and when my colleague suffered their accident and started to use a wheelchair, their hospital said that it was too risky to have them working in a hospital with a wheelchair, which is quite ironic since all their patients would be using wheelchairs at some point.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: Dr Palipana, how close did we come in Australia to having to ration critical care? I know that was not an issue in Queensland, whether by good luck, good management or a combination of both, but how close did we come?
A. I put this question to an intensive care specialist recently and their response was, "We haven't come close yet and we're well resourced", Commissioner.
COMMISSIONER SACKVILLE: Good. Thank you. Thank you very much for your statement and coming today and for giving evidence to the Royal Commission. We appreciate your contribution, thank you.
A. And I thank the Royal Commission for this amazing work.
THE WITNESS WITHDREW
COMMISSIONER SACKVILLE: Thank you.
DR MELLIFONT: The next witness is Christian Astourian. Mr Astourian's statement is at tender bundle D tab 25, exhibit number 5.32, if it could be marked in that respect.
EXHIBIT #5.32, STATEMENT OF CHRISTIAN ASTOURIAN DATED 29 JULY 2020
DR MELLIFONT: I also seek to tender a transcript of a YouTube video that Mr Astourian did a few years ago called Talking to a Stranger, it's a transcript that the Royal Commission has prepared and asked it be marked as 5.32.1.
EXHIBIT #5.32.1, TRANSCRIPT OF YOUTUBE VIDEO OF MR ASTOURIAN CALLED TALKING TO A STRANGER
DR MELLIFONT: And to also mark as an exhibit a page of nine dot points that Mr Astourian has provided to the Commission just this morning thank you, and ask they be marked as 5.32.2.
EXHIBIT #5.32.2, PAGE OF NINE DOT POINTS PROVIDED BY MR ASTOURIAN
COMMISSIONER SACKVILLE: Yes, thank you.
DR MELLIFONT: We have Mr Astourian on the screen.
COMMISSIONER SACKVILLE: Yes, thank you.
Mr Astourian, thank you very much for coming to give evidence. My associate will administer the oath or affirmation if you wouldn't mind.
CHRISTIAN ASTOURIAN, AFFIRMED
EXAMINATION BY DR MELLIFONT QC
DR MELLIFONT: Good morning, Mr Astourian. Thank you for joining us today. Is your name Christian Astourian?
A. Yes.
Q. Thank you. You've made a 7 page statement dated 29 July 2020; is that correct?
A. Yes.
Q. And are the contents of that statement true and correct?
A. Yes, definitely.
Q. Is it correct that you've worked as a disability advocate for over 25 years?
A. Yes, I have.
Q. I'm going to list some of your work, Mr Astourian. I'll just check these with you. You've been a member of the Advisory Committee for the Victorian Human Rights Commission, the Victorian Government Disability Service Commissioner Board, the new Victorian Government Disability Workers Registration Board, the Federation of Ethnic Community Councils of Australia Disability and the Disability Advisory Council for your local area; is that correct?
A. Yes.
Q. Thank you. You have a particular interest in raising awareness of the challenges faced by people with disabilities from culturally and linguistically diverse backgrounds; is that correct?
A. Correct.
Q. Okay. And you live independently and you work and contribute to the community as an active member?
A. Yes, I do, and I need to clarify that I do live independently because of the support that I get every day from my support workers. Because if it wasn't for their support, I would not be here now talking to you and living my life the way I want to.
Q. You're able to live independently because of the support you get from your support workers?
A. Correct.
Q. You are currently the manager of the Diversity and Disability Program at the Migrant Resource Centre, North West Region, St Albans, Victoria, a role you've had for nearly 15 years; is that correct?
A. Correct.
Q. And that centre helps people from culturally and linguistically diverse communities, people with disability from those communities, to be more independent in their everyday lives and to speak out for themselves; is that right?
A. Yes, definitely and to be empowered for self determination.
Q. And to be empowered for self determination?
A. Yes.
Q. It's very important work, Mr Astourian. Can I confirm also that the Centre provides a Diversity and Disability Program, which is a disability self advocacy program?
A. Yes.
Q. And it runs support groups in Easy English and with interpreters; is that right?
A. Yes. Correct.
Q. What I wanted to do, Mr Astourian, if this is okay with you, is to read out the dot points that you've provided to the Commission, which I understand
A. Yes.
Q. to be the key points you would like to communicate in your evidence today.
A. Yes.
Q. Is that okay?
A. Yes, thank you, Counsel.
Q.
1. During the pandemic, the availability of support workers has gone down for a number of reasons, including that they do not feel comfortable working and would prefer to stay home and look after their own families. Support workers do not feel comfortable to work with new clients. It is also the case that some people with disability do not feel comfortable to work with new
support workers. This has also meant that there is less availability of support workers.
2. Isolation is very dangerous, because it can create even more situations of people with a disability relying on very few, or even only one person to support them in their everyday lives. This issue can create situations of abuse and neglect for people with a disability.
3. Support workers in the disability sector are not considered health care workers and, therefore, they have to wait between 5 to 7 days for COVID 19 results, which decrease the disability workforce yet again. Only a few testing sites have considered support workers to be essential health care workers.
4. COVID 19 has exacerbated a situation that is already critical in the disability sector, particularly with support workers being employed on a casual term, not getting enough hours with one provider and some working for different providers at the same time. Workers who work for different providers are more at risk of getting both infected and transmitting COVID 19.
5. There are now government guidelines through DHHS on support workers wearing full PPE in supporting people with disability who are infected and can't wear a mask. Some providers don't have enough full PPE. Support workers don't have the knowledge, experience and expertise that medical staff in hospitals do to support infected clients with a disability.
6. There have been situations at the start of the pandemic where support workers have not been provided with personal protective equipment and have had to buy their own.
7. COVID testing has been very challenging for people with a disability because of non accessible venues in hospital and carpark areas where the person with a disability doesn't have a car.
8. Supermarkets have created a community hour, usually between 6am to 8am, for people with disability and elderly people to have priority shopping. This timeframe is not suitable to people with a disability.
9. Having more police around has been stressful and left some people with a disability feeling less safe when out in their local community because of questioning by police about things other than COVID 19, more often than before restrictions. Police need better training about interacting with people who have a diverse range of disabilities.
Your dot points end with this general statement:
Generally, the biggest issue I see, both at government and community level, is the very low expectation they have of people with a disability as citizens who
achieve everyday life's goals. As long as this attitude doesn't change, people with a disability will never be considered as equals and have the same opportunities in life as ordinary citizens.
Mr Astourian, can I thank you very much for that very well considered document. Does it reflect the evidence you wish to provide to the Commission today?
A. Could you repeat that question?
Q. I just wanted to confirm that the information which I've just read out, that is the dot point document you provided to the Commission today
A. Yes.
Q. reflects the evidence you wanted to give to the Commission today?
A. Yes, definitely. Do you have any questions or any clarification?
Q. Yes, I'll just clarify a couple of things, Mr Astourian, before I hand over to the Commissioners. You speak about the supermarkets having created a community hour between 6am and 8am and that's not suitable for some people with a disability. Is that due to reasons such as it's too early for their support workers to come to them and to assist them to get to the supermarket on time?
A. Yes, definitely, because many people with a disability need at least two hours to get ready in the morning, so if the community hour is between 6am to 8am it means that the support worker would need to come at 4am to assist the person with a disability. And this to me demonstrates, again, the lack of consultation from the retail sector in planning the community hours without proper consultation by people with a disability.
Q. Thank you, Mr Astourian. As I understand your evidence here today and from your statement, people with disability may need at least two hours to get ready which would mean the support worker and the person with a disability may have to start at 4am and you see an important need for there to be communication with the community before setting these community supermarket hours. Do I have it correct?
A. Correct.
Q. I wanted to ask you one more thing before I ask the Commissioners if they have anything they have to ask of you and that is: as we mentioned before, you run support groups and that they use Easy English. Is it the case, Mr Astourian, that you believe that government's messaging about the pandemic should first be translated into Easy English and then into community languages?
A. Yes, definitely, because that would simplify the language in the general comm
unity getting the information. Also, we need to consider that there are people within the community who cannot read in their own language and there are other people even more isolated than other people in the community.
DR MELLIFONT: Thank you, Mr Astourian. Can I ask the Commissioners if they have any questions for you?
QUESTIONS BY THE COMMISSION
COMMISSIONER SACKVILLE: Thank you. Commissioner Galbally?
COMMISSIONER GALBALLY: I would just like to ask Mr Astourian about his one on one support that he's giving now in your role, because you've stopped running the groups. So just what the nature of the issues are that you're finding?
DR MELLIFONT: I'm sorry to butt in. Could I just clarify that the centre ordinarily runs five support groups, but we're down to two at the moment which are running online through Zoom. Some people haven't been able to connect online. Sorry to interrupt.
COMMISSIONER GALBALLY: I'm just asking about the issues that are coming up for you as an advocate with your community.
A. Well, my role is really around is to provide the information that people are not receiving from the government. So everything we get from the Department of Health and Human Services is critical to our client, and this is one of my roles around that, and because also I self advocate. My role is to support people to learn to look for information for themselves. So to make people be more independent in their life, to look at what is available in the community for the best support that they need.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: Thank you very much. Mr Astourian, thank you very much for giving evidence. Thank you for your statement and also thank you for the additional points that Dr Mellifont read out. As it happens, there has been some evidence I think about each of those points and it's a very good summary of a lot of the evidence that we have received over the last two and a half days, so thank you very much for your contributions to the Royal Commission. Thank you.
A. Thank you to all of you for giving me the opportunity to do that.
THE WITNESS WITHDREW
DR MELLIFONT: The next witness is Damian Griffis. His statement is tender bundle B, tab 29 to be marked exhibit 5.34. There is a supplementary statement at part B, tab 30 to be marked 5.34.1.
EXHIBIT #5.34, STATEMENT OF DAMIAN GRIFFIS DATED 11 AUGUST 2020
EXHIBIT #5.34.1, SUPPLEMENTARY STATEMENT OF DAMIAN GRIFFIS DATED 13 AUGUST 2020
DR MELLIFONT: There are a number of annexures in tender bundle E, tab 52 to 54 to be marked 5.34.2 to 5.34.4.
EXHIBIT #5.34.2 THROUGH TO 5.34.4, ANNEXURES TO STATEMENT OF DAMIAN GRIFFIS
DR MELLIFONT: In the course of the evidence of Mr Griffis, we'll play a part of an extract, a pre recorded of evidence from Ms Riemer. It's at tender bundle B, tab 26, to be marked exhibit 5.33.
EXHIBIT #5.33, EXTRACT OF PRE RECORDED EVIDENCE OF MS RIEMER
DR MELLIFONT: That's her statement. The pre recorded evidence is at B, tab 27, to be marked 5.33.1. There is a transcript of the pre recorded evidence at B, tab 28, 5.33.2.
EXHIBIT #5.33.1, PRE RECORDED EVIDENCE OF MS REIMER
EXHIBIT #5.33.2, TRANSCRIPT OF PRE RECORDED EVIDENCE OF MS REIMER
COMMISSIONER SACKVILLE: Thank you, Dr Mellifont.
Mr Griffis, welcome back to the Royal Commission and I will ask my associate to administer the oath or affirmation. Thank you.
DAMIAN GRIFFIS, AFFIRMED
EXAMINATION BY DR MELLIFONT QC
DR MELLIFONT: Can you state your full name please?
A. Damian Griffis.
Q. You've made a 12 page statement dated 11 August 2020 and a 2 page supplementary statement dated 13 August 2020?
A. That is correct.
Q. Are the contents of those statements true and correct?
A. Yes, they are.
Q. And your statements and your evidence today are made on behalf of the First Peoples Disability Network of which you are the CEO and have been for at least 10 years?
A. That's correct.
Q. Your qualifications and experience are vast, but in short, you've worked in the disability sector for over 30 years?
A. Correct.
Q. And amongst your many current roles is being a member of this Royal Commission's First Nations Peoples Strategic Advisory Group. Correct?
A. Yes.
Q. Now, June Riemer is the Deputy CEO of FPDN?
A. Yes.
Q. Ms Riemer has provided a statement, as I've indicated. I'll ask for her pre-recorded evidence to be played. Can I indicate that we will play live just an extract of it and indicate to those responsible for the technology that next time I stand up, if they can cease playing of the video, and we'll return to Mr Griffis' live evidence please.
COMMISSIONER SACKVILLE: Yes, thank you.
VIDEO OF JUNE PATRICIA RIEMER BEGINS
Q. Thank you. Could you state your full name, please?
A. June Patricia Riemer.
Q. And you are the Deputy Chief Executive Officer of the First People Disability Network Australia?
A. Yes.
Q. You have over 40 years' experience collectively across community care and disability industry, Aboriginal development offices, Aboriginal home care manager and program development?
A. Yes.
Q. And you also hold a Bachelor of Nursing, Bachelor of Dental Therapy and Radiology, a Bachelor of Management and a Bachelor of Aboriginal Community Development?
A. Yes.
Q. And you are a representative at the United Nations of Aboriginal and Torres Strait Islander people with disability?
A. Yes
Q. That's as a board member for the Commonwealth Disabled People's Forum and the Pacific Disabilities Forum?
A. Yes.
Q. You are also a board member and director for the Aboriginal Children's Advancement Society and an advisory member for many State and Federal committees for Aboriginal disability?
A. Yes.
Q. You've prepared an 11 page statement for this Royal Commission which you signed on 5th August 2020?
A. Yes.
Q. And is that statement true and correct to the best of your knowledge and ability?
A. Yes.
Q. And the evidence you give today and that within your statement represents your own views?
A. Yes.
Q. And you also speak on behalf of the First People Disability Network?
A. Yes.
Q. All right. Ms Riemer, we've heard in the course of this pandemic that some people have had difficulty in obtaining food and other essentials. Can you please assist the Royal Commission to understand this particular issue in the context of some of the First Nation communities your organisations assist?
A. So what we have done, and Aboriginal and Torres Strait Islander people living with a disability already lived in an impoverished state before the pandemic hit, so in regards to you know food security before and during this pandemic, it was also an issue because the low socioeconomic participation and enablement to, you know, be available to, you know, for education or employment avenues, particularly in rural and remote regions and what we saw during the pandemic, that availability even lessened due to not having support, you know, appropriate income support but also in remote areas there were already food shortages happening because of border closures and other extenuating circumstances in the community, so the basic fundamentals that people needed to, you know, weren't available anyway in very remote regions and the access to those because of their disability was another issue that impacted greatly on these individuals, families, and across many communities.
Q. Do some of your communities need to travel across the border in order to purchase food ordinarily?
A. Yes, so in some particularly in New South Wales we've seen that, that on the borders of Queensland, it's less, you know, kilometres for those groups to travel across to Queensland to bigger centres that may have more access to generalised food supplies, where to come back down into New South Wales, they may be travelling three or four hours and then because of lack of appropriate income support, they don't actually have the petrol or sometimes even the car to get to those facilitates.
Q. And have you heard anecdotes through your work of people actually doing those long drives or commutes and getting to the stores and finding that the shelves were bare?
A. Yes. So that happened particularly up in Utopia, which is 250 kilometres for a lot of those communities to get to the nearest store, and we also heard it in western New South Wales. So for many of those communities, they would come into Dubbo as the large regional centre. When they got there, all the basic utilities or food supplies that they needed were gone. So it was a round trip that they did for nothing and at that stage in the early days of the pandemic, there was no other food supports or emergency supplies getting to a lot of those communities.
Q. And do you know why?
A. I just think, you know, this goes back to the generalised issue that people with disability, as we would say, you know, they're like the last bastion to, you know, people being thought of, or what they need, you know, they need to access community in general. So for people with disability, they're living on the marginalised areas of community already and it wasn't just it's just not thought about, you know, how these people can be better supported, you know, particularly when a pandemic or other crisis happens. You know, people were in communities, not you know, disability is not acknowledged in general across communities and so then when you add that other label of being Aboriginal, being isolated, there's many layers to why people are impoverished or disadvantaged and this is a conversation that Australia needs to have.
Q. Thank you. Your statement speaks of a partnership with the Al Ihsan Foundation to provide care packages to First Nations communities. Can you tell us about that?
A. They originally approached us, so they're an international foundation and charity that support, generally, overseas and war torn regions and they originally rang us first of all to see how they could support communities. They were really concerned for the Aboriginal and Torres Strait Islander communities. The original conversation was also about, you know, the bushfire season and they'd acknowledged that particularly in southern New South Wales, a lot of our community were still living homeless because of the bushfires.
So after several conversations and emailing back and forth, we they wanted to build a partnership with us, but it was a collective partnership. They could supply the essential food packages, but FPDN actually had to distribute, so they were happy for us to nominate regions where they should go and it's been a fruitful partnership in regards to, normally they don't deliver also, it was about picking up, but FPDN doesn't actually have that capacity, so they delivered to regional areas for us and then it was about FPDN then developing a volunteer workforce, developing an information sheet of the most vulnerable and that came down to our workers in regions who knew families, so we not only delivered to Aboriginal and Torres Strait Islander people with disability, but also you know, the elderly. Then after that we delivered to other vulnerable groups that we knew of in particular regions.
Q. With respect to the regions that you delivered to, were there some key regions which were in most desperate need of assistance?
A. Yes. So we started with the South Coast because that had been devastated, particularly our communities from Nowra in the Shoalhaven region down to Bega, because they were still having impacts from the previous bushfire season. Many are still to this day living in tents or caravans, haven't been supported and because for a lot of our communities they'd lost their identity, so they weren't eligible for or didn't know how to navigate the government systems to get other supports in their life. So people were living day to day, you know, week to week in regards to hand outs supporting them. So we knew of that and that's a cultural thing in being a First Persons Disability organisation and our workers being key advocates on the ground. They knew communities and they knew who to contact and once the word got out, which happens in our communities, they were contacting back to our workers on the ground and sharing information who needed this valuable support at this time.
Q. And when you speak about people having lost their identities, are you speaking about them having lost records of identification that would ordinarily be used to navigate the system?
A. Yes, yes. So they'd lost all of their personal information and for a lot of our mob, it still goes back to not really understanding how to navigate systems or how to work through sitting on a telephone line for an hour to get through, and people really you know, when it goes to a central point of communications for government agencies, they're not understanding the stress and the vulnerabilities that people at that moment are in and asking questions that mightn't be, you know, relevant to the current situation. They're already living in a stressful environment and trying to do the best they can and so we found there was a lack of compassion which kept coming through from the community. So they would give up rather than pursuing several telephone calls, or accessing other entities that were government buildings that they felt marginalised anyway prior to the pandemic, or prior to the bushfires.
VIDEO OF JUNE PATRICIA RIEMER CONCLUDES
DR MELLIFONT: If I can ask that recording be stopped now. That's an extract of a larger pre recording with Ms Riemer and I apologise previously for mispronouncing her name. The full, unedited pre record and transcript will be tendered and can I ask they be marked exhibit 5.33.3 and 5.33.4 respectively.
EXHIBIT #5.33.3, FULL UNEDITED PRE RECORD OF MS RIEMER
EXHIBIT #5.33.4, TRANSCRIPT OF FULL UNEDITED PRE RECORD OF MS RIEMER
DR MELLIFONT: Now, Mr Griffis, you've in fact read Ms Riemer's statement and her full transcript?
A. That's correct.
Q. Ms Riemer also speaks to issues such as access to education being very problematic during the pandemic, particularly in remote areas; children not having access to devices or to good internet connections and children falling behind; financial struggles given that the Disability Support Pension only received two supplements of $750, whereas expenses increased significantly, particularly in regional and remote community areas where things cost more. She also spoke about the FPDN working with media to help engage with the community in a culturally appropriate way; the need for media to move away from a text heavy environment and do more visual content, individualising communications in ways that are culturally appropriate. And at the end of her evidence, and very critically and importantly, she speaks of the need for more comprehensive data collection and mapping across Australia of First Nations people living with disability.
Do you agree with the contents of Ms Riemer's statement and pre recorded evidence?
A. Yes, absolutely.
Q. Can I turn to a couple of additional issues, please? FPDN endorsed a Statement of Concern, which was made by internationally recognised, independent experts in the area of human rights, bioethics and disability; is that correct?
A. Yes.
Q. And co signed an open letter to the National Cabinet which outlines the immediate actions required for Australians with disability in response to COVID 19?
A. Yes.
Q. Okay. I want to ask you also, at the outset of the pandemic, did FPDN recognise the need for culturally appropriate community messaging?
A. Yes, it did.
AUDIO DROPPED OUT
We are commonly the most disadvantaged of all Australians. This is because First Nations Aboriginal and Torres Strait Islander people with disability often face discrimination based on their indigeneity and their disability. So the stakes are very
high in terms of vulnerability to COVID so as a consequence we thought that it was critical that we be proactive, so we developed a range of information resources that were both disability and culturally accessible. So these included short animated films and a short film by the Deadly Deaf Mob for our deaf community.
Q. You found them to be effective communication mechanisms; is that correct?
A. Yes, we definitely did. We also participated in a number of media interviews, particularly with Indigenous media that has wide coverage across the country and the feedback we received was that that was a very valuable way to get information out.
Q. Thank you. Now, is it correct that in partnership with Professor Cameron Stewart and Professor Jackie Leech Scully and their organisations which are Sydney Health Law, the University of Sydney, and the Disability Innovation Institute at UNSW respectively, that FPDN developed an ethical decision making for First Peoples Living with Disability policy document, which outlines how the treatment of First Nations people living with disability should be prioritised and managed. Correct?
A. Yes, that's correct.
Q. Those guidelines were finalised on 27 April 2020; is that correct?
A. That's correct.
Q. And why were those guidelines developed?
A. Well, over the existence of the First Peoples Disability Network, we've regrettably encountered many examples of institutional racism in the health system. Indeed, it's often the case that in particular regional based hospitals that there is a reputation often of Aboriginal people experiencing racial discrimination and sometimes what can result is that Aboriginal people with disability when they present at hospitals they can be viewed or labelled as being drunk, or we can have covert or more casual forms of racism which can result in a less urgent response, for example. Or, we've known of incidents where Aboriginal people with disability have been turned away. So we were very concerned about that. We were concerned about a scenario, for example, where, say, a 50 year old Aboriginal man with psychosocial disability who perhaps is a smoker may be triaged out of the health system, and we were basing this on the experience of African Americans in the United States and also, people from Hispanic communities and also people from low socioeconomic communities and we were also aware that in England and Wales, it's now being reported that as many as two thirds of the deaths are of people with disability.
So we were very concerned and very nervous about scenarios where Aboriginal people who are considered to be ageing at a much younger age could be triaged out of the health system. So that's why we wanted to make a strong public statement to say that every Australian is valuable and every Australian has a right to their health
supports that they need. We were particularly concerned about the risks in terms of triage related to intensive care and we still have that concern with the way things are progressing in Victoria, but generally speaking, Australia appears to be performing well, but we certainly wanted to make a statement, a public statement.
Q. So, in effect, you wanted to get on the front foot to raise this as a concern in Australia, because you were deeply concerned about the vulnerability of First Nations people with disability due to the double disadvantage of disability and indigeneity, is that correct?
A. Exactly right, and we were also concerned that the Aboriginal health plan, COVID health plan, which was done in partnership between National Aboriginal Community Controlled Health Organisations and the Commonwealth Department of Health, despite being some 40 pages long, made no mention of disability. This is an all too common experience when you're dealing with the issue of intersectional discrimination. We don't get enough a high enough profile in disability and we don't get a high enough profile in Aboriginal justice, if you like, and we're walking in both those worlds. So what ends up happening is the needs of our people with disability sometimes get completely overlooked or only tokenistically mentioned.
Q. And Ms Riemer spoke of the collaboration between Al Ihsan and FPDN to deliver fresh food and key items to your community; I take it that was a welcome approach from Al Ihsan?
A. We were very grateful for that approach. It's a reality, as June said, that many Aboriginal people across Australia, always experience risk around food security. It's not unique to the pandemic. We can provide care packs for many of our people across the country all of the time, because one of the major challenges, particularly in regional and remote Australia, is access to fresh produce and healthy food. It's not uncommon to see swinging price mark ups, for example. I've seen it myself only very recently, $9 or $10 for a 2 litre bottle of orange juice, for example. If you live in poverty, you can't possibly meet those costs and you end up eating the cheap takeaway food, if you like, and that has a serious consequence in terms of health outcomes. That's a constant problem across Aboriginal Australia, the pandemic has only served to highlight that.
Q. Your statement also refers to some members of the community not having access to running water or experiencing a compromised water supply, or not having access to hot water and you make the point that the lack of access to a reliable water supply can clearly have serious adverse health effects and exacerbate COVID 19 risks.
A. I don't believe that Australians know sometimes the extent of poverty experienced by Aboriginal Australians, particularly in regional and remote parts of the country. It is true that there are some Aboriginal people in Australia who can't access a reliable water supply, or don't have access to hot water. I think this is an issue that needs greater exposure and it's frankly a national shame and it's a common
experience for Aboriginal people particularly in regional and remote Australia, that they don't have access to the basics of life, the fundamentals of human rights.
Q. If you could just hold with me there in a minute Mr Griffis.
Chair, I will be about 5 to 8 minutes more with Mr Griffis. Would you like me to press on now or resume at 2 o'clock?
COMMISSIONER SACKVILLE: Please do press on and I'm sure Mr Griffis would prefer that.
DR MELLIFONT: Thank you. Has there been an increased demand for FPDN services over the pandemic?
A. Yes, there has. Our staff have been overwhelmed, frankly. We get calls from around the country from every corner of the country asking for a range of different supports. Sometimes these can be basic requests, other times they're often very complex. Often what happens for some of our people with disability and their families, they make contact with us at absolute crisis point. They've exhausted all the other avenues that they're aware of and they come to us seeking support. We're not funded for that work, but we never turn anyone away. June, my colleague, will often work late into the night and receive calls into the night asking for help,
So, this goes outside the normal remit of our work. It's evidence why we need an Aboriginal owned and operated disability individual advocacy scheme. We've needed that for a long time and we've been calling for that for more than a decade. To be frank, it's time to get on with that.
Q. To get a sense of the real personal nature of this, you've been getting calls from people who simply can't get incontinence pads for their disability needs?
A. It can range from exactly that issue to, "I need to get my wheelchair urgently repaired and I live in a remote community 500 kilometres from a large regional centre." It can be, "I can't access my medication", or "I've lost my Disability Support Pension, I've been taken off that." It can also relate to and we had an incident only a couple of weeks ago where we were asked to support a young Aboriginal woman with intellectual disability who had travelled from Melbourne was travelling from Melbourne to Ballina on a plane. Not being aware of the rules, she arrived in Sydney to transit through and then she was placed into quarantine. She was deeply distressed and we had to provide some support to her. So the issues range broadly, but regrettably, often they are very, very urgent and require immediate action.
Q. Now, your supplementary statement sets out a specific recommendation. That is, you would like this Royal Commission to consider making a recommendation that the Commonwealth Government fund a 1800 telephone number and text messaging service for FPDN, so that members of First Nations' communities from around the
country can have a free number that they can call for help, guidance or direction about where to get help and support for First Nations people with disability, their carers and their family. Is that recommendation specifically in respect of help related to COVID 19?
A. Yes, it is, but it often can be broader than that, but certainly it's in relation to COVID 19. Such a contact point needs to be in place for the long term. So, a lot of Aboriginal people and a lot of Aboriginal people with disability do have access to mobile phones in regional and remote Australia, but the cost to engage with phone based support systems is prohibitive for many people, so that's the logical reason why we need a 1800 contact point. But we have to particularly during COVID where we can't travel as an organisation, we have to at the very least it's a very simple model be available to people to be able to give them advice. It's a very simple idea. I realise the government is investing heavily in what they call the ‘on line disability gateway’, but that's not going to be accessible to the vast majority of Aboriginal people with disability, so that's why we need this standalone system.
Q. What do you see as being the specific benefits to First Nations communities specific to COVID 19 of such a resource?
A. So it can act as a referral point, so we could potentially answer any sort of question around where your nearest COVID testing place might be, provide more information on how to maintain good personal hygiene, what do we mean by social distancing. Anything, really. Nothing would be off limits. Anything a First Person with a disability needed help with.
Q. My last question, Mr Griffis: in your view, what needs to happen in terms of recovery from this pandemic?
A. So, we would say three things. An immediate investment in an Aboriginal owned and operated nationwide individual advocacy program. As I've said before, we've been calling for this for a decade now. It's long, long overdue. The observation I would make, it seems that "advocacy" is a dirty word to government, to be honest, but this Royal Commission alone demonstrates the need for it. It would be great if FPDN didn't need to be in existence, but it does and that is a reality.
The second point we would say, is the ‘online disability gateway’ that's been heavily invested in by the Commonwealth Government is a resource, but I fear that there is a view in government that this will be the fix all for all things disability. The disability gateway will not be able to address the poverty experienced by many Australians with a disability. It is utterly meaningless to an Aboriginal man with disability who's homeless, living on the riverbed in a remote community. It will have nothing to contribute in terms of addressing overcrowded housing, for example, in some of our communities.The gateway is a resource. Individual adequacy is the conduit for meaningful change in the lives of all Australians with disability.
And my final point is the development of a parliamentary accountable mechanism
similar to Closing the Gap. FPDN has been advocating for this for some time now. Similar to the Closing the Gap structure whereupon every Prime Minister of the day has to make a statement to the Australian Parliament about the situation for Australians with disability. The potential measures are already there in the National Disability Strategy. We feel if this was developed in partnership with the disability communities, it could evaluate the needs of Australians with disability into the public consciousness.
DR MELLIFONT: Thank you, Mr Griffis. Can you pass our regards to Ms Riemer. Commissioners.
QUESTIONS BY THE COMMISSION
COMMISSIONER SACKVILLE: Thank you, Dr Mellifont. Commissioner Galbally? I think you said you don't have a question, because you're not on. You're muted.
COMMISSIONER GALBALLY: No, thank you very much. No questions, thank you.
COMMISSIONER SACKVILLE: Thank you. Mr Griffis, what is the Al Ihsan Foundation?
A. Yes, so it's a foundation that operates mostly overseas and they approached us to provide support to our community, because they knew there was a gap there. We were very grateful to receive it. It's a lovely partnership across cultures, which has been a wonderful experience and a very positive one and we've been very grateful for their kind donations. The value of their donation is difficult to quantify, but we're very grateful to receive it.
COMMISSIONER SACKVILLE: Where is it based? What's the source of funding, do you know?
A. I don't know, to be honest. I don't have that information about where they're resourced. They're certainly Australian based, but they do do overseas aid work also.
COMMISSIONER SACKVILLE: I see. Thank you very much.
Thank you, again, for yet another of your contributions to the Royal Commission which are many and we hope that they will continue. Thank you, again, for coming today and for your evidence.
A. Thank you.
THE WITNESS WITHDREW
DR MELLIFONT: Time for the luncheon adjournment, Commissioner. Is 2 o'clock convenient for resumption?
COMMISSIONER SACKVILLE: Just.
DR MELLIFONT: 2.15, 2.10? I'm in your hands.
COMMISSIONER SACKVILLE: Can we manage if we have a break until 2.10? Will that be okay?
DR MELLIFONT: Absolutely. Thank you.
COMMISSIONER SACKVILLE: We'll resume at 2.10. Thank you.
ADJOURNED [1.09 PM]
RESUMED [2.10 PM]
COMMISSIONER SACKVILLE: Dr Mellifont, yes.
DR MELLIFONT: Thank you. The next witness is Dr Jason Agostino. His statement at tender bundle B tab 31 to be marked exhibit 5.35. His curriculum vitae is at tender bundle B, tab 32 to be marked as exhibit 5.35.1. Other related documents are at tender bundle D tabs 59 through 69A to be marked exhibits 5.35.2 to 5.35.13.
EXHIBIT #5.35, STATEMENT OF DR JASON AGOSTINO
EXHIBIT #5.35.1, CURRICULUM VITAE OF DR JASON AGOSTINO
EXHIBIT #5.35.2 THROUGH TO 5.35.13, STATEMENT OF DR JASON AGOSTINO OTHER RELATED DOCUMENTS
COMMISSIONER SACKVILLE: Thank you. I think we have Dr Agostino there. Thank you very much for giving evidence today. I'll ask my associate to administer the oath or affirmation to you.
DR AGOSTINO: Thank you.
JASON AGOSTINO, AFFIRMED
EXAMINATION BY DR MELLIFONT QC
COMMISSIONER SACKVILLE: Dr Agostino, thank you. Dr Mellifont will now ask you some questions. I take it you are in Canberra, she is in Brisbane and we are in Sydney. Let us hope all will be well.
DR MELLIFONT: Thank you, Doctor. Can you state your full name please?
A. Jason William Agostino.
Q. You've made a 17 page statement dated 12 August 2020.
A. That's correct.
Q. Are the contents of that statement true?
A. They are.
Q. And your statement and your evidence today is made on behalf of the National Aboriginal Community Controlled Health Organisation known as NACCHO for short?
A. It is.
Q. You are a General Practitioner and an Epidemiologist?
A. I am.
Q. And is it the case that most of your clinical work for the last 15 and a half years or so has been within rural and remote Australia?
A. It has.
Q. And of that time, the last 10 and a half years approximately, has this been mainly in the field of Aboriginal and Torres Strait Islander health?
A. That's correct.
Q. You are a Medical Advisor to NACCHO, a General Practitioner to the Gurriny
Yealamucka, which is an Aboriginal Community Controlled Health Organisation in Yarrabah, far North Queensland, a Lecturer at ANU and a Research Fellow at the National Centre for Epidemiology and Population Health; is that all right?
A. Yes, all those things.
Q. There's 143 NACCHOs across Australia providing about 3 million episodes of care yearly for 400,000 people?
A. That's correct.
Q. Is it your understanding of available data that the percentage of First Nations people with disability is considerably higher than that percentage in the non Indigenous population?
A. Yes, it's much higher than in non Indigenous Australians.
Q. Okay. Now, is it the case that NACCHO, together with the Royal Australian College of General Practitioners, the Lowitja Institute, ANU and expert clinicians, collaborated to prepare the COVID 19 Primary Health Guidance document. The purpose of which is to provide recommendations to support health care teams in the prevention and management of COVID 19 for First Nations people?
A. That's correct.
Q. Is that document, a document which is updated from time to time seeking to respond to the rapidly changing environment we live in?
A. Yes, that's right. Some new guidance will be out soon.
Q. I want to ask you about the increased risks that coronavirus presents for First Nations people. Is an increased risk of rapid spread a more severe impact for the First Nations population, compared to the non Indigenous population?
A. Yes, that's right. There's increased risks of both rapid spread and more severe disease. More rapid spread is due to crowded housing, so more Aboriginal and Torres Strait Islander people are living in crowded housing than non Indigenous people and often those houses have inadequate infrastructure and I noted Damian highlighted the lack of water, you know, in terms of highlighting sort of really crucial structures that are needed for cleaning in some houses. So, in that environment with crowded housing, multigenerational families and poor access to cleaning then potentially if one person in that house gets coronavirus than it will spread rapidly to the rest of the household.
Q. Risk of severity?
A. The risk of severity has to do with the high prevalence and early onset of chronic
medical conditions. We know that some conditions mean that you're at higher risk of being admitted to intensive care or dying if you get COVID 19. Those conditions include heart disease, diabetes, chronic kidney disease and emphysema or chronic obstructed pulmonary disease. In all those conditions Aboriginal and Torres Strait Islander people have high prevalence of those conditions, significantly higher than non Indigenous Australians, and they also have it onset years earlier, sometimes 20 years earlier. The final thing is more than any one condition, what infers higher risk of more severe disease is if you have two or more chronic conditions and Aboriginal and Torres Strait Islander people frequently have two or more of these chronic conditions that can confer poorer outcomes with coronavirus.
Q. Now, I'd like to ask you about telehealth and your observations about the use of telehealth during pandemic insofar as it relates to the provision of health services to First Nations people.
A. The pandemic has seen a rapid expansion of Australia's telehealth capacity, and through that expansion the Government has been listening to some of the needs of Aboriginal and Torres Strait Islander communities, with most Medicare items that are aimed at Aboriginal and Torres Strait Islander people available through telehealth. The area where there has been less response and where there's some needs that haven't been met is around patient end support. So what I mean by that is that for many of our patients, they're not accessing telehealth in their home, they're still coming into the clinic and in the clinic they're accessing remotely based general practitioners, allied health professionals, or hospital based specialists and when they do that, they're often supported to do that by a locally based clinician. Normally an Aboriginal or Torres Strait Islander health worker or APRA nurse, or sometimes if they're seeing a specialist they'll be supported by a general practitioner and throughout the pandemic, all of that patient well, not all of it, but nearly all of that patient support has been provided with no remuneration to the health service.
Q. Okay. Without that support, is the consequence that telehealth remains largely inaccessible to many First Nations people with disability?
A. Yes, there's a lot of barriers to accessing telehealth. You know, in general there's issues with connectivity and having sufficient band width, but then if you, for example, have got hearing impairment or impaired health literacy, then you really do need that support from the patient end support to engage meaningfully and safely in telehealth.
Q. Your statement refers to there being some suggestions by some NDIS workers that larger screens may help some people with disability to engage better with a remotely based clinician; do you agree with that?
A. Yes, I think amongst the infrastructure that would support telehealth, bigger screens would be a helpful addition.
Q. And is it your view that there needs to be more appreciation by government,
both of the cost of internet connectivity to the patient and of the need to have enough band width to engage in video conferencing?
A. Yes. Where possible, we do want people to engage in video, but the costs are prohibitively expensive for that, so we need to find ways to support people to engage in video telehealth facilities where possible.
Q. Now, are there particular funding challenges for providing patient end support?
A. Yes, there are. One that preceded the pandemic, but is still an issue, is about accessing specialists via telehealth. In the current requirement for accessing funding for patient end support, the remote specialist needs to claim Medicare and that then triggers that the clinic can claim patient end support, but the thing is that most of the patients that we see are seeing hospital based specialists who don't bill Medicare. Therefore, even though our services provided that patient end support, they're not getting funded whereas if they were providing support to a private specialist, they would get funded. It's completely inequitable and needs to be changed.
Q. Okay.
A. The other thing --- sorry, Kerri.
Q. Please continue.
A. The other thing is about now that we do have all these other health professionals that can be seen remotely via telehealth, we need to create equivalent patient end support Medicare items to support to help them seeing remotely based GPs, Allied Health professionals and psychologists.
Q. Do you see a remedy or remedies for these particular funding challenges?
A. You know, these items exist, so if we remove the requirement for the remote specialist to claim Medicare, that will then make that more accessible. And then there needs to be new Medicare items created for patient end support.
Q. Okay. And new Medicare items for patient end support for what particular context?
A. For if you're seeing a remotely based general practitioner, Allied Health practitioner and psychologist.
Q. And do you regard that those changes to Medicare, if they are in fact made in the future, would be advantageous for people with disability in general. That is, not just First Nations people with disability, but people with disability in general across Australia?
A. Yes, I think for many reasons, patient end support is really best practice
for can be best practice for people with disability. You know, it supports team based care. It helps with, you know, issues that may be occurring around health literacy. For Aboriginal and Torres Strait Islander people, if it's with an Aboriginal health worker, it supports culturally safe care as well.
Q. Have you seen challenges in First Nations communities where a member or members need to self isolate?
A. Yes. As we discussed, many people live in crowded homes with multi generations within the one household and there is really no adequate space within their own house for them to isolate safely. So if we're putting them into that environment, we're running a really high risk that they are going to spread coronavirus to other members of their family.
Q. Okay. So your statement speaks to the default model of isolation being for people in spacious homes who are able bodied and who don't have caring responsibilities and that this is not the position for many First Nations people with disability and that there's been no clear guidance provided on how a person may isolate if they live in a crowded home, have caring responsibilities, or are themselves in need of care. They're opinions you hold and held when you wrote your statement?
A. Yes, that's correct. You know, speaking to NDIS workers around, you know, what might happen if people with significant who are living on their own, but have significant caring needs, if they were to quarantine, there is no clear guidance for those people about what to do.
Q. Can you assist the Royal Commission in understanding your belief as to the need for culturally appropriate psychological and medical supports proactively arranged for people in isolation?
A. Yes. I think if we are going to support people through a 14 day isolation period, we need to be engaging them early in both psychological supports and in medical care. You know, people often don't know how to seek out medical care or psychological support, so it can't be something that we just assume people will request. It needs to be something that is built into how we provide isolation in quarantine, and when we talk about "culturally safe care", people that are familiar with caring for Aboriginal and Torres Strait Islander people and can provide the appropriate care there.
Q. And that need arises out of a concern that mental health can decline and rapidly decline in circumstances of isolation for First Nations people; is that correct?
A. Yes, that's correct.
Q. I want to move now to the topic of contact tracing and ask you whether it's your impression that some privacy requirements have produced an impediment to optimal
contact tracing?
A. Yes, that's correct. Staff within our health services are highly skilled in contact tracing and that's been used to good effect with other infectious diseases that we've found or have been reported to us through this pandemic, that often those skills amongst our Aboriginal health workers aren't being used to effectively and efficiently contact trace.
Q. Okay. So from your experience you believe that ACCHOs may be able to offer support to the efforts of public health units through contact tracing and to provide psychological support; is that correct?
A. That's true.
Q. Two of the reasons you hold that view is because, in your experience ACCHOs, or at least some of them, will have familiarity with that process, because they've done it before for other diseases and that there is a degree of community trust and knowing how and where to find people; is that correct?
A. Yes, that's right. You know, often people might not for whatever reason, their phone might be disconnected, they might not be at the one residence, they might be living between a couple of homes and, you know, within Yarrabah where I work, the community members have always been invaluable in helping find where people are and also having conversations around contact tracing that are more likely to provide useful information in terms of controlling the pandemic.
Q. And does this issue link, in your view, to the importance of government working closely with First Nations communities in their efforts to combat COVID?
A. Yes, that's right. I think there's been an under appreciation through this process of the public health functions of Aboriginal community controlled health organisations. They've got obviously a great deal of expertise in communicating public health messages, but also in doing contact tracing and helping control spread.
Q. In paragraph 33 of your statement you say there needs to be better communication of positive test results coming back to general practitioners. What's been the problem?
A. Look, across the board, we've heard multiple reports that general practitioners haven't been informed of positive results or negative results for their patients. Most of our testing is occurring outside of our clinics, so we're reliant on State based clinics or Commonwealth funded clinics to inform us of a positive result, and in many cases, that has not been occurring.
Q. Okay. And your view is that general practitioners are a very important resource for supporting the patient through this time when they get a positive COVID result, so it's important that they are advised, is that correct?
A. Yes, that's correct. The vast majority of patients that are positive will end up being managed in the community and in that case, their GP and their local clinic is vital to the management of the illness.
Q. Okay. I want to move now to the COVID 19 Advisory Group and you sit on that group, is that correct?
A. That's correct.
Q. And it was established in the first week of March to advise on health issues related to COVID 19 and it reports to the Australian Health Protection Principal Committee; is that correct?
A. That's correct.
Q. It has representatives from each State and Territory, general practitioner experts plus First Nation expert epidemiologists, correct?
A. That's correct.
Q. Now, if I can move through this relatively quickly because it is set out in your statement, you consider that the rapid formation of that group was a recognition of the threat that COVID 19 posed to First Nations people?
A. Yes. The last pandemic, H1N1 in 2009, disproportionately impacted Aboriginal and Torres Strait Islander people. There was five times the rates of hospitalisation and death and reflecting upon that, one of the limitations was limited policies and programs for Aboriginal and Torres Strait Islander people. So this was set up to address that gap from the previous pandemic.
Q. I want to move now to paragraph 45 of your statement, which says that:
Up until now the case rates for First Nations people are approximately one third of the case rates for non Indigenous people and that the statistics also tell us that 1% of COVID 19 cases nationally is amongst First Nations people.
What can we take from those statistics?
A. Yes. So just to clarify what I meant by that, we know that 3.3% of the Australian population is Aboriginal and Torres Strait Islander and therefore we would expect that 3.3% of cases, of COVID 19 positive cases, would be Aboriginal and Torres Strait Islander people, but in fact, it's less than 1% which is very positive news for Aboriginal and Torres Strait Islander people and speaks to the strength of the response. What we can take from that is, first, to give the due credit to Aboriginal and Torres Strait Islander people and their communities. They identified
the potential threat of coronavirus to their communities, in particular elders, and were very proactive in putting in measures to educate the population and also to protect their population.
The second thing is that this success has highlighted that if the government prioritising Aboriginal and Torres Strait Islander voices and listening to Aboriginal and Torres Strait Islander experts gets results. We are now five months into this pandemic and we continue to have lower case numbers than we expect. Any case is unwanted, but you know, and I think a lot of that has become due to listening to experts, Aboriginal and Torres Strait Islander people and experts in Aboriginal and Torres Strait Islander health.
Q. Do these comparatively low rates mean that we can relax, that we can take our foot off the pedal?
A. No, definitely not. Because of those vulnerabilities that we spoke about in terms of rapid spread and in terms of more severe disease if it gets into the population, you know, that means we need to continue to be really proactive in communicating, in doing targeted communications for Aboriginal and Torres Strait Islander people and also supporting communities to implement interventions to protect their communities.
Q. Okay. Have any of the ACCHOs communicated to you any specific difficulty with communication from Commonwealth Government or the NDIS or the NDIA?
A. Yes, they have. So in some areas where NDIS coordinators and where the community connector programs are working, communication has been able to work well and we've been able to use community connectors to communicate messages to people with disability around coronavirus and what's available to them. But where that integration doesn't exist and where the Aboriginal community and people with disability in particular is reliant on mainstream NDIS providers, we're finding that those messages aren't getting through clearly and people aren't aware of what services are available to them throughout the pandemic.
Q. Does this highlight the need for the importance of locally tailored and culturally appropriate information by NDIS, QFC and the agency?
A. Yes, it does. We've seen that health services have been really effective in communicating general health messages and I think we need to support them to also communicate more specific messages for people with disability as well.
Q. All right. Are you aware that there are some concerns amongst health practitioners about First Nations people, including First Nations people with disability refusing testing?
A. Yes, we have heard some reports that there have been some refusals and some concerns around the test itself. You know, we want to maintain a really high rate of
testing so that we can detect coronavirus as early as it enters into a community.
Q. So is the perception that the test, or what people believe the test involves, is a barrier to clients, people presenting for a test?
A. Yes, I think that is one of the concerns. People are really concerned about, you know, pain associated with a test and things like that. So targeted communication that sort of explains for the community what the test involves and perhaps some high profile people having the test I think would go a long way towards allaying those concerns.
Q. And you indicated that testing rates are important and your view is that high testing rates is key to monitoring and controlling COVID 19, is that correct?
A. 100%. The higher the testing rates the earlier we're going to detect it circulating in any community.
Q. Okay. Finally from me, NACCHO's recommendation to seek to try to address this perception that the test is not something you want to put yourself through, I suppose, is that Australian Government ensures its communications be expanded to include descriptions and videos of prominent First Nations people getting the test, take the myth out of it; is that correct?
A. Yes, that's correct. I think that would go some way towards allaying people's concerns.
Q. So your belief is that having examples of and understanding how the test works in practice will actually help to dispel any residual fear or concern in getting the test
A. That's correct.
Q. and that a more informed public will result in a rise in the number of tests conducted; is that correct?
A. That's correct.
DR MELLIFONT: Thank you, Dr Agostino. Those are the questions from me. I'll hand it to the Commissioners.
QUESTIONS BY THE COMMISSION
COMMISSIONER SACKVILLE: Thank you. Commissioner Galbally?
COMMISSIONER GALBALLY: Thank you very much. Look, I just wanted
to I'm sure that you've covered this but First Peoples Disability Network are very involved with the advisory group and the whole roll out from your point of view?
A. Yes, I think I was listening to Damian's testimony before and, you know, he pointed out that the management plan doesn't include specific mentions of actions for First Nations people with disability and I accept what he's talking about, intersectionality and how it can be left out. I think sometimes well, often, you know, considering the high prevalence of disability when we're making plans we're implicitly thinking about people with a disability, but I think that he's made a good point, that we need to be more explicit about those plans for people with disability at times.
COMMISSIONER GALBALLY: Thank you.
COMMISSIONER SACKVILLE: Dr Agostino, who was responsible for setting up the advisory group?
A. It was really led by NACCHO, so my organisation here, and Dr John Casey is the co chair of that with Dr Lucas Detoka who works within the Australian Government Department of Health. So those two co chaired it and the department runs a secretariat for it.
COMMISSIONER SACKVILLE: The composition of the group includes quite a number of people within various departments. But it was essentially the Indigenous organisations themselves that were the moving forces, were they?
A. Well, yes. We had already for reasons not to get into, I missed the first meeting, but that was based on the community control sector wanting to come together and be more informed about COVID 19 and from that became this advisory group with the Department supporting that. So it has representatives from each State and Territory Health Department, but also each State and Territory ACCHO affiliate.
COMMISSIONER SACKVILLE: Well, it's striking that it was set up so early in the piece.
A. Yes, I think if we look back to some of the communications that were happening, there was significant communications happening in February. I think the community controlled sector understood what this could possibly mean for their communities and was very you know, wanted to be on the front foot and to protect their communities and to prevent what happened in 2009 happening again.
COMMISSIONER SACKVILLE: Yes. I have noticed that, of course, the relatively low rates of COVID 19 infection among First Nations people. It's readily understandable that those low rates have occurred in jurisdictions like Western Australia and the Northern Territory which took, as I understand it, very substantial
and rigorous measures in order to ensure that remote communities, for example, were not exposed. But what, in your view, was the most important consideration that has or factor that has prevented infection in urban communities, where as as you say most First Nations people do live?
A. It's always hard to pin it on one individual action. I think, you know, really it is about leadership by Aboriginal and Torres Strait Islander people and the community controlled organisations in there and the governments listening to that. I think there's been excellent communication and those health services in those regions, especially in Victoria where we're seeing a lot of cases, they've done exceptional work in not only educating their patients, but also supporting people that do test positive for COVID 19, or that have to quarantine for various reasons. So really I think the success is because of the actions that Aboriginal and Torres Strait Islander people have taken themselves.
COMMISSIONER SACKVILLE: Recognising the point that you made to Dr Mellifont that, of course, nobody can afford to relax at this point in the pandemic, would it be fair to say that so far this has been a very successful response as far as the protection of First Nations communities and in particular, First Nations people with disability?
A. Yes. I think at this stage it is, but as I said, because of those risk factors we can't relax and we're not relaxing.
COMMISSIONER SACKVILLE: Thank you. Dr Agostino, thank you very much for your statement, for coming to give evidence and for the work that you are doing. Thank you very much.
A. Thanks very much for having me.
THE WITNESS WITHDREW
DR MELLIFONT: The next two witnesses are Claire Robbs from Life Without Barriers and Andrew Richardson from Aruma Services. Both of these parties have been granted leave to appear. I understand the parties are still coming into the virtual waiting room, so if I might just deal with some of the formalities to start with. Aruma Services is represented today by Ms McLeod, a Senior Counsel instructed by MinterEllison. Life Without Barriers is represented today by Ms Mitchelmore, a Senior Counsel instructed by Corrs Chambers Westgarth.
COMMISSIONER SACKVILLE: Perhaps I should invite the legal representatives to announce their own appearances.
DR MELLIFONT: Thank you.
MS MCLEOD: Your Honour, and Commissioners, please I appear for Aruma Services and Mr Richardson, the CEO of Aruma. My name is Ms McLeod and I am instructed by MinterEllison.
COMMISSIONER SACKVILLE: Thank you very much, Ms McLeod. You can do away with the "your Honour" stuff. It doesn't apply anymore. Yes.
MS MITCHELL MOORE: May it please the Commission, my name is Anna Mitchelmore and I seek leave to appear instructed by Corrs Chambers Westgarth for Life Without Barriers and for the witness, Ms Claire Robbs.
COMMISSIONER SACKVILLE: Thank you, Ms Mitchelmore. Are there any other appearances, other than those previously announced? If not, Dr Mellifont, please continue.
DR MELLIFONT: Sorry for jumping in with those appearances myself. I didn't realise everybody was in the virtual space.
I'll start, though, with the formalities of where the material is. The statement of Andrew Richardson is tender bundle G, Tab 1 to be marked exhibit 5.250. The Aruma response to a notice given by the Commission to Aruma, tender bundle G tab 2, to be marked exhibit 5.251.
EXHIBIT #5.250, STATEMENT OF ANDREW RICHARDSON
EXHIBIT #5.251, ARUMA RESPONSE TO NOTICE GIVEN BY COMMISSION
DR MELLIFONT: Attachments to the statement are at tender bundle G, tabs 3 to 47 to be exhibits 5.250.1 to 5.250.45. Other documents are at G tabs 48 to 59, to be exhibits 5.252 to 5.254.1.
EXHIBIT #2.250.1 THROUGH TO 5.250.45, ATTACHMENTS TO STATEMENT
EXHIBIT #5.252 THROUGH TO 5.254.1, ATTACHMENT TO STATEMENT OTHER DOCUMENTS
DR MELLIFONT: The statement of Ms Robbs is at G, tab 51, to be exhibit 5.255. A supplementary statement is at G tab 51 to be exhibit 5.270.
EXHIBIT #5.255, STATEMENT OF MS CLAIRE ROBBS
EXHIBIT #5.270, SUPPLEMENTARY STATEMENT OF MS CLAIRE ROBBS
DR MELLIFONT: The LWB Response, Life Without Barriers response to a Commission notice is at G tab 52, exhibit 5.256. The attachments to the statement are at G, tabs 53 to 72 to be marked exhibits 5.255.1 5.255.20. Other relevant documents related to Ms Robbs' evidence are at G tabs 73 to 84, to be marked exhibits 5.257 to 5.268.
EXHIBIT #5.256, LIFE WITHOUT BARRIERS STATEMENT IN RESPONSE TO COMMISSION NOTICE
EXHIBIT #5.255.1 THROUGH TO 5.255.20, ATTACHMENTS TO LIFE WITHOUT BARRIERS STATEMENT
EXHIBIT #5.257 THROUGH TO 5.268 OTHER RELEVANT DOCUMENTS RELATED TO MS CLAIRE ROBBS' STATEMENT
DR MELLIFONT: Might the witnesses be affirmed.
COMMISSIONER SACKVILLE: Yes, thank you very much. All that will be done.
ANDREW RICHARDSON, AFFIRMED
CLAIRE ROBBS, AFFIRMED
EXAMINATION BY DR MELLIFONT QC
DR MELLIFONT: Ms Robbs, if I can start with you please. Can you state your full name?
MS ROBBS: Claire Lorraine Robbs.
DR MELLIFONT: Are you the Chief Executive Officer of Life Without Barriers?
MS ROBBS: I am.
DR MELLIFONT: Did you commence at Life Without Barriers in 2004 and then hold various roles across training, quality and management before becoming CEO in 2011?
MS ROBBS: Yes.
DR MELLIFONT: Do you have a degree in Sociology and Social Policy, a postgraduate degree in Psychology and an executive Master of Business Administration?
MS ROBBS: Yes.
DR MELLIFONT: Do you have over 20 years' experience working in disability mental health, aged care and out of home care services?
MS ROBBS: Yes, I do.
DR MELLIFONT: In your statement and in your evidence here today, do you speak on behalf of Life Without Barriers?
MS ROBBS: Yes.
DR MELLIFONT: Mr Richardson, could you state your full name please?
MR RICHARDSON: Andrew Donald Richardson.
DR MELLIFONT: Are you the Chief Executive Officer of Aruma Services?
MR RICHARDSON: Yes, I am.
DR MELLIFONT: Do you hold a degree in Law, a degree in Computer Science and an MBA?
MR RICHARDSON: Yes, I do.
DR MELLIFONT: Are you currently a non executive director of Special Olympics Australia and a member of the National Disability Insurance Agency's Industry Reference Group?
MR RICHARDSON: Yes, I am.
DR MELLIFONT: Can I ask you a little more about Aruma? Is it the case that Aruma or Aruma Services, but from time to time I'll just say "Aruma", is one of
Australia's largest providers of support services to people with disability across New South Wales, Queensland, Victoria and the ACT.
MR RICHARDSON: Yes, that's correct.
DR MELLIFONT: Is it a not for profit organisation and a registered charity?
MR RICHARDSON: Yes, it is.
DR MELLIFONT: Have you held the position of CEO since 2006?
MR RICHARDSON: Yes, I have.
DR MELLIFONT: And does Aruma support approximately 5,400 customers employing close to 5,800 staff across the organisation including 499 supported employees with disability?
MR RICHARDSON: Yes, that's all correct.
DR MELLIFONT: And in very short terms, does Aruma deliver a broad range of support services to adults and children with disability, including supported independent living, flexible supports, support coordination, therapeutic services and supported employment?
MR RICHARDSON: Yes.
DR MELLIFONT: I turn to you, Ms Robbs. Is Life Without Barriers also a not for profit organisation and registered charity?
MS ROBBS: Yes, we are.
DR MELLIFONT: And does it work in more than 530 communities from remote outback to major cities and provides services to more than 23,600 people including 6,000 adults and children with disability and employs over 7,000 staff?
MS ROBBS: Yes, that's correct.
DR MELLIFONT: An extract of your business organisational chart in your statement indicates that there are a number of different areas of work that Life Without Barriers do and that disability, aged care and mental health services are just part of that work; is that correct?
MS ROBBS: Yes, that's correct.
DR MELLIFONT: A significant part, nonetheless.
MS ROBBS: Yes, indeed.
DR MELLIFONT: Ms Robbs, since the pandemic commenced, have you also been a participant in a number of committees including the COVID 19 Disability Working Group, which is a committee chaired by the CEO of the NDIA and which includes representatives of disability sector groups, the NDIS Minister's Office, the NDIS QSC and the Department of Social Services, that's a Commonwealth department?
MS ROBBS: Yes.
DR MELLIFONT: And are you also a participant in the Charity, Philanthropy and Fund Raising Advisory of the National COVID 19 Coordination Commission?
MS ROBBS: Yes, I am.
DR MELLIFONT: Do the Terms of Reference of that group include the gathering of information from the sector on the impact COVID 19 is having on vulnerable Australians, and advising on how responses by the sector, businesses, the community and government could be better tailored to meet their needs and identifying barriers to organisations to continue to deliver vital services to the community?
MS ROBBS: Yes, that's correct.
DR MELLIFONT: And by the term "vulnerable Australians", is that intended to include some people with disability?
MS ROBBS: Yes, that is.
DR MELLIFONT: What's the reporting mechanism and dates with respect to reporting of that committee?
MS ROBBS: That committee reports straight through to Prime Minister and Cabinet, the COVID Commission. The group that I was part of was a working party advising to the COVID Commission.
DR MELLIFONT: Now, Ms Robbs, you've provided a 43 page statement dated 14 August and a 25 page statement dated 14 August 2020. Are the contents of those statements true and correct?
MS ROBBS: Yes.
DR MELLIFONT: Mr Richardson, you've provided a 37 page statement; are the contents of that statement true and correct?
MR RICHARDSON: Yes.
DR MELLIFONT: Now, Ms Robbs, can I please start with you and with a brief overview. This is dealt with at length in the statements, and same with your
statement, Mr Richardson, but just dealing with some things here, in response to the pandemic you took on the control of national controller for the Life Without Barriers COVID 19 response on 16 March 2020?
MS ROBBS: Yes, that's correct.
DR MELLIFONT: All right, so that means you're working with your national emergency management team on the pandemic response?
MS ROBBS: Yes.
DR MELLIFONT: Is it correct that part of that response included a communication strategy, which itself included the introduction of a COVID 19 call centre?
MR ROBBS: Yes.
DR MELLIFONT: Now, as I understand it, that's a 1800 hotline run by trained staff 24/7 for people with disabilities, their families, carers and staff to discuss enquiries and other information about COVID?
MS ROBBS: Yes.
DR MELLIFONT: Does it contain language service and options for people with hearing impairment?
MS ROBBS: It does have access to those services. They would be requested then when the person contacts the call centre.
DR MELLIFONT: How does Life Without Barriers monitor the questions and feedback provided to the hotline?
MS ROBBS: There's a comprehensive review and report provided through to the national emergency management team and myself daily on both the reports in regards to the numbers of reports and also the content of those reports in a summarised form and also any trends that are coming up from the reports that we feel is something we need to attend to, either through more communications, any decisions or any other support for our clients, our families or our staff.
DR MELLIFONT: Now, your statement sets out the way in which you've sought to communicate specifically with people in enclosed residential settings, people who don't have computer or internet access and people with cognitive intellectual or developmental disability. What I want to ask you about now is communication strategies in respect of people who are from culturally and linguistically diverse backgrounds. So I note that your statement at paragraph 64 says that:
Translating and interpreting services are made available as needed, including in relation to the call centre to ensure that service users from CALD
backgrounds can access information about COVID 19 and changes to services and restrictions to disability service users.
I just want to explore that paragraph. It refers to people from culturally and linguistically diverse backgrounds accessing information. Does this require self initiation by them?
MS ROBBS: May I refer to my statement, if that's helpful?
DR MELLIFONT: Most certainly. That's page 16, at the very bottom, paragraph 64 commences, and it goes over to the top of page 17.
MS ROBBS: Thank you. Yes, so we're aware that a number of the people we support and a number of our staff, English is not their first language, so we do provide access to translator services and also do actually translate material. One of the reasons being we have also at Life Without Barriers a large program that supports refugees and therefore have a lot of communication strategies there to make sure that we're able to translate our material to the language groups of the people that we support. As well as people being able to come to us for support to access translator services or material that meets their language needs, we also provided the ability for our local staff to come to us to request, if they were aware that a particular family or colleagues or particular clients required translation.
DR MELLIFONT: The Commission heard evidence earlier this week from Ms Sarah Yahya, who works in communications and particularly for people in the CALD backgrounds and she spoke about the need to really have carefully tailored communication strategies and to take into account that some people, particularly refugees, may have come from a very traumatic or tortured background and the need to ensure that communication strategies take into account those features, including aspects of trust. Has Life Without Barriers engaged to that level in their communication strategies for the CALD communities, or is that something you might want to delve in deeper in the future?
MS ROBBS: I think we do have we do understand the issue that has been identified because of our support for refugees, however, that being said, we actually have had lower than expected requests for information and we've produced lower than expected variations in language material, which tells us that we're not offering that in as helpful a way as people might need us to offer that and in hindsight, something that we actually we need to be more assertive in the way that we provide those resources, but also that service to people, and that's definitely an improvement for us.
We haven't had any direct feedback to indicate that people's needs haven't been met, but just merely on the lack of demand makes us think that it's something we need to take a different approach towards moving forward.
COMMISSIONER SACKVILLE: Dr Mellifont, I'm sorry to interrupt, I'd just like
if I might to get a better understanding of the services that Life Without Barriers provides, and I apologise if the material is in here and I haven't fully appreciated it. Ms Robbs, would you explain who your customers are? What are the categories of and I think "customers" is the word you use, don't you, to describe the people who receive your services?
MS ROBBS: We tend to use "clients", actually.
COMMISSIONER SACKVILLE: That's fine, whatever the term. Would you mind just explaining, at least for my benefit, who the clients are?
MS ROBBS: So the largest group that we support are people with a disability and they are generally adults with an intellectual disability and that's across the country, so in all States and Territories. We also have a large child protection program and that's predominantly children that aren't able to live with their families anymore and have been taken into State care and we provide foster care, mainly for those children. We also provide services to people who are here seeking asylum and are waiting the outcome of their visa status and refugee services, and people who would be in the community that would need support to live in the community independently, so people with mental health challenges, older Australians and those requiring support with drug and alcohol challenges as well.
Really, in summarising, we really are focused on people who live independently in the community, but need additional support to enable them to do that safely and well.
COMMISSIONER SACKVILLE: What proportion of your clients, if you know, are people with disability of one kind or another?
MS ROBBS: So our disability service is the largest part of our organisation. We support just over 5,500 people with a disability and overall in a year, the organisation would support just over 22,000 people in some sense. The difference is that in our disability services, the majority of people who we support there require not maybe 24/7 support, but certainly reasonably intensive support to live in the community. While some of the other services, like our refugee services, it's a much, much lighter service that we provide. It's not as intense in their life.
COMMISSIONER SACKVILLE: And the proportion or numbers of your clients who are participants in the NDIS?
MS ROBBS: So all of the people within our disability services program are participants in the NDIS.
COMMISSIONER SACKVILLE: All of them? Can I just ask something that, again, may be due to my lack of understanding? At paragraph 65 of your statement, you say that as of 9 August 2020, you give numbers as to the numbers of staff and clients who have had confirmed who are confirmed as having COVID 19 and I think there are what seem to be rather different figures that are given elsewhere.
For example, in your witness statement, paragraph 5 talks about two staff being confirmed, one supported independent living client, and then over the page, there's 13 group homes in which there have been COVID positive infections, COVID 19 infections confirmed. I'm just a bit confused as to what the figures actually are. Would you mind clarifying that for me?
MS ROBBS: Certainly, I can try. My understanding is that those are different figures, because they refer to different time periods. In the main statement, in point 65, those are our numbers as at 9 August.
COMMISSIONER SACKVILLE: Yes.
MS ROBBS: In my second witness statement at point 5, those are the numbers as at 18 June.
COMMISSIONER SACKVILLE: And over the page at paragraph 6, there were outbreaks, were there, at 13 group homes between 9 August and 19 August?
MS ROBBS: And so that relates to all of the notifications that were made through the Quality and Safeguards Commission, and I apologise, I'm not sure if that is also up to 9 August or indeed it was requested to a third date. I can confirm that. Sorry.
COMMISSIONER SACKVILLE: Perhaps it would be helpful if after you're finished today, if you could let us know what the figures are up to date and in some uniform way, it would be quite helpful.
MS ROBBS: Of course.
COMMISSIONER SACKVILLE: Dr Mellifont, I apologise for interrupting your questions. I shall now keep quiet for a little while.
DR MELLIFONT: Can I just indicate our understanding, Ms Robbs, so that this can be checked subsequent to your evidence. We understand, in summary, the evidence to be that from the period of commencement of the pandemic until 18 June 2020, two staff were confirmed positive and one SIL client, that from the period 18 June to 9 August, a total of 14 staff and 7 clients, and that as at last night, late last night, the time of the statement and no criticism, given we asked for it just shortly before yesterday that there are 13 group homes where a COVID 19 positive infection is confirmed in respect of either staff or clients?
MS ROBBS: Yes, that's my understanding, thank you.
DR MELLIFONT: Can I then come back to the questions that I was asking about, that is, communications with respect to the CALD community, but ask now Mr Richardson. If I can ask you in terms of your communication strategy for that particular group and appreciating that that particular group is, in fact, constituted by many different communities, was there a particular emphasis or particular
consideration given with respect to the way in which COVID information was disseminated or provided to people from culturally and linguistically diverse backgrounds?
MR RICHARDSON: Yes, it was quite a challenge in that the information and the need to communicate has been very fast moving. We've pursued a sort of a broad, two pronged approach. One is to use electronic mail and websites and other forms of communication where we have access to online communication technologies. So, for example, if you go to our website you can translate any of the information there into multiple languages, but I think the main way we have sought to communicate with people from culturally and linguistically diverse backgrounds, given the nature of the pandemic, has been at a local level through local staff who already have relationships and effective communication channels with those customers, with those family members.
DR MELLIFONT: Can I ask you whether your communication strategy has a particular specialisation, I suppose, with respect to First Nations service users?
MR RICHARDSON: No, it doesn't.
DR MELLIFONT: Ms Robbs, same question?
MS ROBBS: Yes, so we did produce particular material both for First Nations clients and for First Nations staff.
DR MELLIFONT: Mr Richardson, is that an area that you might give further consideration to into the future.
MR RICHARDSON: Yes, it's an area that we are giving further consideration to. I think we'll get to reflect on the lessons learnt to date. There are lessons around communication to minority groups and to Aboriginal and Torres Strait Islander people and also, striking a balance between communication and consultation in a fast moving context such as the pandemic.
DR MELLIFONT: Yes, and we will come to the challenges of the information highway, if I can call it that, in this very fast moving environment we live in.
Ms Robbs, at paragraph 21 of your statement, which is page 6, in response to a question asked by the Commission, "Did Life Without Barriers restrict access to external visitors to disability accommodation?" You state that:
Decisions regarding access by external visitors were made to ensure compliance with public health orders and stay at home directives that have been in force and amended from time to time across the various states and territories of Australia and that where Life Without Barriers place restrictions on access by external visitors in the early days of the pandemic, the restrictions were generally speaking consistent with standards applicable in the general
community.
Then you say that where there are special vulnerabilities with certain clients which placed them at a higher rate of infection and/or complication, local staff had the flexibility to consider implementing access restrictions in addition to those required by public health orders, and that access restrictions, therefore, varied between locations and over time.
First, a short question; do I understand that to mean, therefore, that there was a level of discretion vested in local staff about the extent of restrictions that could be placed in their particular locality?
MS ROBBS: Yes, there was a level of discretion provided at an organisational level.
DR MELLIFONT: Was there oversight in respect of ensuring that that discretion was exercised in a proportionate way, and by that I mean by balancing safety concerns with the fact that, for example, group homes are people's home, which should involve a certain degree of liberty?
MS ROBBS: Yes, it was a really challenging area for us to navigate, I think as an organisation, because there were such competing views from our clients and their families and indeed our staff, about exactly that balance that you speak to, the safety and wellbeing. I'm confident that we articulated the way that we wanted this to be managed as an organisation and we most certainly were clear there was no unilateral exclusion for any visitors to homes. That we indeed felt that we were clear about essential visitors being family and friends and people that were important to our clients. Where we allowed discretion was where perhaps someone had a particular health need that left them more vulnerable to the virus.
That was decided, then, in consultation with family, so some family, for example, chose not to visit their sons or daughters in this time because either they or their son or daughter had a complicated health need that they felt was a risk. We monitored this through our visitor checklist and our visitor sign in book which we kept at all of our homes and then they were part of the assurance check, both at a house or group home level and then there was a second level of assurance from our safety, health and safety team across the country as well.
DR MELLIFONT: Can I ask, Mr Richardson, I want to take you to paragraphs 14 and 16 which again deals with the issues of restrictions and paragraph 14 says that:
Restrictions were applied to different forms of support at different times in response to State based public health orders and subject to the consideration of the level of community transmission within a particular region.
The paragraph goes on. I won't read it all out, but I am trying to understand, was there a level of discretion proposed in the locality as to what restrictions could be
imposed? If so, what was the oversight mechanism to make sure that they weren't being imposed disproportionately?
MR RICHARDSON: No, we sought not to give discretion. I think you'll see the number of the annexures to my statement that our policies and communications spelt out as clearly as we could our interpretation of the public health directives, or the care facilitates directions enforced in that State at that time and then followed that up with frequently asked questions and the like to try to communicate as clearly as possible what our expectations of our staff were in that setting. Clearly, restrictions varied by service type. For example, we closed our community hubs, I think it was on 26 March, in response to the directions about social distancing and when you could and couldn't access the home, whereas clearly in supportive living you don't go and close someone's home.
Where we sought to have discretion was to maintain discretion as much as we could within those public health guideline contexts for our customers. So, for example, we consulted with our customers individually if they wished to attend, for example, another provider's day program after that directive was in place and we might have spoken with their families if that was appropriate. But ultimately, whilst we encouraged people in certain directions, we respected their choices and supported them in those choices.
DR MELLIFONT: What's the oversight mechanism
COMMISSIONER SACKVILLE: Dr Mellifont, my self imposed silence has come to an end.
I'm trying to understand how this works and I apologise again. Paragraph 21, Ms Robbs, of your statement states that:
Where the special vulnerabilities of certain clients place them at higher risk of infection, et cetera, local staff have the flexibility to consider implementing access restrictions in addition to those required by public health orders.
If we confine ourselves to supported independent living, these are people, I take it, with disability living in their own accommodation?
MR RICHARDSON: Could you repeat the paragraph reference please?
COMMISSIONER SACKVILLE: I'm talking about Ms Robbs' paragraph 21 of her statement. Did you hear my question, I'm sorry.
MS ROBBS: I did, thank you, yes. The paragraph 21 was referring to people who would be in what we would call "group homes", generally.
COMMISSIONER SACKVILLE: I see. That's limited to group homes, is it?
MS ROBBS: Group homes
COMMISSIONER SACKVILLE: It doesn't say so, but
MS ROBBS: Yes, I think we have assumed that perhaps from the question that references disability accommodation and we would usually use that language to mean some group home that we were responsible for rather than someone's personal home in the community where we just go in and provide service.
COMMISSIONER SACKVILLE: I take it that with Supported Independent Living you wouldn't regard yourself as having authority to limit access to the person?
AUDIO DROPPED OUT
MS ROBBS: .... restrictions came about trying to reduce the number of people entering and coming through the group homes at any one time in an effort to try to, I guess, support people's safety and reduce the risk of the virus being spread. Those decisions were very clear in stay home provisions in Victoria and have been clear in various jurisdictions over the time as they have implemented different health regulations as well, as they have been relevant to people with a disability.
COMMISSIONER SACKVILLE: But you do have clients, I take, it supported independent living clients, who live in their own accommodation not group homes?
MS ROBBS: Yes, we do, yes.
COMMISSIONER SACKVILLE: Did your organisation impose restrictions on visitors to those people in their homes?
MS ROBBS: My apologies, I understand your question now. My apologies. No.
COMMISSIONER SACKVILLE: Thank you. Sorry, Dr Mellifont, again.
DR MELLIFONT: No problem. Thank you, Commissioner.
I will return to my question, which was with the oversight, what was the oversight mechanism for ensuring that the guidelines issued with respect to when restrictions could be placed and when they could not, whether that was complied with?
MR RICHARDSON: The main way was reporting through the line of management and then the academic response team has had some oversight provided to it as well, so two prongs of oversight.
DR MELLIFONT: I want to move on the question of PPE and ask you what challenges were faced by Aruma Services with respect to PPE during this pandemic?
MR RICHARDSON: Major challenges. And the situation has improved steadily as agencies and Aruma, as all organisations have learnt and built supply chains. Within Aruma we did not traditionally maintain a large central stock of high grade PPE, so N 95 masks, face shields, full gowns, et cetera. We had basic stocks at each home as needed but we did not have a centralised supply chain.
As the pandemic broke in its early stages, as I think we're all aware, there was a considerable shortage of PPE, both for members of the general community and also for disability support organisations. We sought clarification from government agencies, both Federal and State, through multiple channels about would we have access to high grade PPE through the national medical or state stockpiles, if we had an infection, and it was very difficult to get a "yes" or "no" answer. It was typically "no" in the early stages. And if it was "yes", it was "Yes, but it will only depend if hospitals and aged care haven't used it all first."
So I think it's one of the learnings for all of us out of this process, is the need to efficiently maintain adequate stocks of high grade PPE so that wherever there's an outbreak, be it hospital, be it aged cared, be it in disability support, there is sufficient access. It is certainly something we have changed our practice, so we now have pretty significant stockpiles as supply has eased up. But it was a challenge for the first month or two and we are were quite thankful that our first significant outbreak happened recently and we didn't have to put those rather tenuous supply chain options to the test at scale.
DR MELLIFONT: Your response to the Commission, that is Aruma's response to the Commission, said that:
National PPE stockpiles were difficult to access due to the stockpiles being opened to disability serves at a later stage than other health and aged care services. The application process and priority criteria also made PPE difficult to access.
Does that speak about the deprioritisation you have just mentioned?
MR RICHARDSON: Yes. I think there was a shortage of PPE across the country, government agencies were appropriately seeking to ration it until they could build stocks but unfortunately they did not build disability support as an essential service and therefore disability support workers were well down the pecking order, if I can put it that way, in the potential to access those stockpiles.
DR MELLIFONT: You speak about the application process itself being a difficulty with access. What does that mean?
MR RICHARDSON: I'm probably not the best person to give you details. But anecdotally what the staff had told me and some colleagues have told me is you would be asked to fill out a form, then there would be a different form, it is submitted
electronically, you might never get a response or you ring up someone and they would say, "It should be State, not Federal." There was just no clarity of application for disability support organisations to get a guaranteed response.
DR MELLIFONT: Ms Robbs, the Life Without Barriers response to the Commission spoke of access to PPE for the frontline disability workforce during the COVID 19 pandemic being initially extremely problematic. You state that planning by Health Departments for priority access by the disability sector to PPE stockpiles would assist, provide and bring peace of mind to people with disability, their families and the disability workforce.
Can you explain, so far as you understand, why priority access wasn't provided to the disability workforce and people with disability? Do you have an understanding of that?
MS ROBBS: So my understanding around the PPE is there was limited supply in those early days in March and early April in the country. Then I do think that that had a relationship with the definition of whether disability services were essential services, and certainly the understanding of the sector at the time, that that was a barrier. And I know that then there was a move for there to be preferential access to masks for people with disability and service providers from the stockpile, and that was a very positive step from the NDIA and government.
I think that the reason that we have made the statement about being worried what people with a disability and providers have is because without having that essential status, or whatever status you require, to be able to access the PPE reliably, when a decision is made, like Victoria recently made around eye protection for disability support workers, then there is a flurry of activity to then be able to source that next PPE item. And understandably that causes people with disability, their family, carers and providers a lot of worry now but also in the days and months ahead.
DR MELLIFONT: I want to move now to the topic of PPE training. Ms Robbs, what guidance was Life Without Barriers, if any, provided by Commonwealth agencies or governments with respect to training for your staff and your customers about the use of PPE?
MS ROBBS: In regards to guidance we would receive from Commonwealth, that would come from the Safeguards Commission, the National Safeguard Commission. That generally comes in the form of alerts which draw providers' attention to regulation changes or any other requirements we need to be aware of and also provide links and sometimes hyperlinks for others to resources, be that videos or training material or tool kits that would be helpful for providers to then use to be able to train their staff.
DR MELLIFONT: Can I get to the nitty gritty of it. There was really no specific training, as I understand it, provided by Commonwealth agencies or governments, apart from some online resources, which would enable a trainer to see that the person
being trained understood what they were being told was putting the PPE on correctly, was doing appropriate donning and doffing in appropriate locations. Is that your understanding?
MS ROBBS: Yes, my understanding is that providers will be all using different resources because they will be sourcing them from different places in an effort to try to find something that helps train their staff. Some of them will have competency checks as part of that, which is what you are referring to, and some will not. As far as I'm aware, there isn't one particularly approved or mandated training course across the sector at the moment as far as I'm aware.
DR MELLIFONT: Is that your understanding too, Mr Richardson?
MR RICHARDSON: Yes.
DR MELLIFONT: Okay. I want to move then to the set of guidelines called "The Communicable Diseases Network Australia Coronavirus Disease 2019 Outbreaks in Residential Care Facilities: CDNA National Guidelines for the Prevention, Control and Public Health Management of COVID 19 Outbreaks in Residential Care Facilities in Australia.” You are both familiar with that document?
MR RICHARDSON: I wouldn't claim familiarity, Dr Mellifont. There are many documents that have guided us. Our teams would be familiar with them. I don't have personal familiarity.
DR MELLIFONT: Ms Robbs?
MS ROBBS: If this is the residential services practice guidance ---
DR MELLIFONT: Yes.
MS ROBBS: --- I'm not familiar with the exact title, but if that is what this is then, yes, I am familiar with the document.
DR MELLIFONT: If I can ask you both to take it from me that the following is correct: that the COVID 19 information pack "Information for NDIS providers and workers" encouraged providers of residential accommodation for disability accommodation settings to view those CDNA guidelines; and if you can accept from me that those guidelines make reference to things like clinical waste, diagnostic materials, residents having their own room with en suite facilities, sections or areas of the facility which can be cut off, can I ask you whether those things would uniformly apply across your residential facility?
MS ROBBS: Most certainly not.
MR RICHARDSON: No, there's variability in the physical property design and layout in particular.
DR MELLIFONT: Okay. I want to turn to the topic of Community Visitors.
Ms Robbs, in your statement you say that restrictions were not placed on advocates or Community Visitors, including where the accommodation was situated in a hotspot. The requirement was that the visitors adhere to visiting requirements of all visitors, for example, handling and social distance. Can I ask you: did advocates and Community Visitors, to your knowledge, continue to visit your services in person during the pandemic at around the same level as pre pandemic, or was there a reversion more to online community visits or telephone community visits?
MS ROBBS: Some states --- New South Wales, I think and possibly Queensland --- did move their Community Visitor program to telephone at a point in time related to the national lockdown. Other jurisdictions kept that face to face. And I'm not aware that many advocacy groups have particularly changed the way that they engage with clients and both certainly had access to Life Without Barriers clients.
DR MELLIFONT: Mr Richardson, your statement refers to Community Visitors visits being suspended, not by Aruma, but suspended in New South Wales and Queensland, and that visits in those states moved to an online platform. I want to ask --- sorry, let me preface this by saying that the Commission has heard evidence in previous hearings about the critical importance of Community Visitors as a protective mechanism.
I want to ask, Mr Richardson first, were specific measures put in place to ensure that those online community visits could occur in circumstances of privacy and confidentiality?
MR RICHARDSON: To the best of my knowledge, absolutely, yes, in that I would strongly agree that Community Visitors are an important part of protecting the rights and wellbeing of our residents, particularly people who don't have strong social and family networks. The more independent people, be they Community Visitors or advocates, who can visit in my mind the better.
DR MELLIFONT: Ms Robbs, in Life Without Barriers were specific mechanisms put in place to ensure privacy and confidentiality of community visits in that online forum?
MS ROBERTSON: Certainly I'm confident that we were clear that we wanted that to occur and I know that we definitely purchased additional equipment to enable that, if it were to be done by telephone or tablet form. And I'm not clear of the specifics around the privacy and confidentiality but I would have some confidence that our staff would know how to facilitate that.
DR MELLIFONT: Okay. With those qualifications, you would agree with the critical importance of ensuring privacy and confidentiality in those settings?
MS ROBBS: Oh, most certainly.
DR MELLIFONT: And that's something which organisations such as yours should ensure happens and is audited to make sure there's compliance. Do you agree with that?
MS ROBBS: Yes, I do.
DR MELLIFONT: Mr Richardson, do you agree with that?
MR RICHARDSON: Yes. I think we --- with one rider, I guess, just to be transparent, that Community Visitors look at a whole home and the dynamics of the whole home and the behaviours of staff that they observe, as well as meet with individual people, and that's really important too. Often those type of prompts tell you more than someone putting it in a file or whatever it may be. So subject to that, yes, clearly, privacy of any relationship and discussion between a Community Visitor or advocate and a resident is fundamentally important.
DR MELLIFONT: Okay. Can I move now to the general topic of pandemic and COVID 19 planning? Is it the case, Ms Robbs, that Life Without Barriers hadn't test run a pandemic or infectious disease plan prior to COVID 19?
MS ROBBS: We have a comprehensive emergency management plan and we did test run that and we then fine-tuned that with the bushfires and the floods also over the Christmas period. Within that there was a lot of mechanisms that were consistent with our pandemic management plan. But when we started to realise the potential impact of COVID 19 in March, we chose to have a specific COVID 19 pandemic management plan. And at that time we obviously hadn't tested that, although we certainly had tested our emergency management plan, which had a lot of very similar components; leadership, communication, decision making, were all in the emergency management plan.
DR MELLIFONT: But I am correct in saying, aren't I, that the emergency response plan prior to March 2020, that is the March 2020 pandemic plan, did not include specific planning for a pandemic situation?
MS ROBBS: Correct.
DR MELLIFONT: And we have, of course, in relatively recent history been through the swine flu pandemic. Were to your knowledge any particular steps taken in consequence of that pandemic with respect to emergency response?
MS ROBBS: So the part of our emergency response plan that most related to a pandemic, the reason that we didn't think it was as relevant in the COVID piece, because that was generally where we assumed it would be confined more geographically or by particular groupings. So it was more around infectious disease, not what we expected the COVID 19 to be. So in that way there was an infectious
disease part of the emergency management plan but it wasn't sufficient for what we thought we were going to need for COVID 19 as well.
DR MELLIFONT: In respect of those infectious disease components of the emergency response plan, that wasn't the subject of a specific test run prior to the pandemic?
MS ROBBS: No, it was not, no.
DR MELLIFONT: Mr Richardson, same questions to you. Is it correct to say that Aruma's emergency response plan prior to January 2020 did not include specific planning for a pandemic situation?
MR RICHARDSON: Yes, that's correct.
DR MELLIFONT: Is it correct to say therefore that prior to the COVID pandemic Aruma hadn't test run a pandemic or infectious disease plan?
MR RICHARDSON: Yes, that would be true. As with Life Without Barriers, we made the decision to take our enterprise crisis management plan and build a specific COVID 19 plan off the back of that; in late March that was completed. But yes, up until then we had tested our emergency --- our response plan and it had been very live through bushfires and floods in the month before but it did not have a specific pandemic response component.
DR MELLIFONT: Again, the swine flu question, that didn't trigger specific attention to pandemic planning or infectious disease planning for your emergency response plan; is that correct?
MR RICHARDSON: That's correct.
DR MELLIFONT: Okay. Can I ask you, each of you, have you --- "you", that is your organisation --- ever been audited or assessed in relation to pandemic or infectious diseases or outbreak management plans by the NDIA, NDIS, QSC or Commonwealth departments?
MR RICHARDSON: Not to my knowledge, no.
MS ROBBS: I would say the same, I'm not aware that there's a specific requirement around that.
DR MELLIFONT: And to your knowledge has the Commonwealth Government or any Commonwealth agency, including the QSC and the NDIA, made any checks with your organisations about whether you have a pandemic or infectious disease outbreak management plan?
MR RICHARDSON: Same answer. Not to my knowledge.
DR MELLIFONT: Ms Robbs?
MS ROBBS: Look, we have had a plan requested from a number of external government departments. I couldn't be sure if the Safeguards Commission was one of those but certainly we have been asked for our plan from a number of authorities.
DR MELLIFONT: From a number of, sorry?
MS ROBBS: Government departments. Sorry.
DR MELLIFONT: And the details of that are something that we could ask you to check on at a convenient time?
MS ROBBS: Of course, of course.
DR MELLIFONT: Now, you are each aware that there's a requirement to notify the NDIS QSC of a confirmed worker or participant infection; correct?
MR RICHARDSON: Yes.
DR MELLIFONT: And yes, Ms Robbs?
MS ROBBS: Yes.
DR MELLIFONT: It's the case, isn't it, that each of your organisations have made notifications pursuant to that requirement from time to time; correct?
MR RICHARDSON: We have.
MS ROBBS: Yes.
DR MELLIFONT: And as we heard earlier, Ms Robbs, Life Without Barriers has had a number of infections and so there has consequently been quite a number of notifications to the QSC; is that correct?
MS ROBBS: Yes, that's correct.
DR MELLIFONT: Has the QSC provided any specific advice or required Life Without Barriers to take any specific action as a result of those notifications being made?
MS ROBBS: No, not that I'm aware of to date.
DR MELLIFONT: And Mr Richardson, the same question to you.
MR RICHARDSON: No. We did receive correspondence from the Commission
regarding the non submission of some notifications but that was subsequently withdrawn, as one of the complexities of the moment is that in Victoria, where as we all know the bulk of COVID outbreaks have been, there are Supported Independent Living services that are still under the regulatory control of the State Government, not the NDIS QSC, and so our outbreaks in July were in that setting and therefore the reporting obligations amongst the --- several reporting obligations was to the State Government, not to the NDIS QSC.
DR MELLIFONT: Okay. So can I take it from both of you that that all means that there's been no specific advice from any Commonwealth department or agency to do anything in relation to any of the confirmed infections of workers or participants or impact on your facilities or your operations? Is that correct?
MS ROBBS: Yes.
MR RICHARDSON: Just to clarify, Dr Mellifont, did you say Commonwealth Government?
DR MELLIFONT: Commonwealth Government.
MR RICHARDSON: Yes, that's correct.
DR MELLIFONT: And Commonwealth
MR RICHARDSON: Yes, that’s correct. The State Government, but not Commonwealth.
DR MELLIFONT: Okay. I want to turn briefly to the topic of the workforce. This is dealt with in both of your statements, so I won't re-traverse what is there. But, Ms Robbs, your statement identifies the risks which can be presented by casual workers working across a number of different locations and that Life Without Barriers is trying to take steps to reduce the amount of times that that occurs. From the information provided, for example, in respect of some of the positive infections in COVID, workers at those locations, a number of them worked across a number of locations at the relevant time.
Can you speak to the challenges involved in having a casual workforce in the disability sector?
MS ROBBS: Yes. So the challenges of having a casual workforce existed before COVID, so before the pandemic. And really the challenges there are having the right balance to be able to have flexibility for your staffing, balanced with continuity of care and a familiar team and people in the home. And part of that is being able to attract and retain staff that want to make disability care a career for them. Within the pandemic, though, that really has been exacerbated because when a house has a suspected or a positive case we often then have to isolate entire staff teams, which can be up to 12 people possibly, and then we have to be able to bring in additional
staffing who have not had contact with that house. And really in that situation we often have to rely heavily on casuals and then those casuals, by means of the fact that they are casual and not permanently on a roster, often do work across several locations, which we know is something we want to reduce. So it's really a fine balance between being able to maintain the agility and the flexibility that we want within those rosters in group homes but knowing that at any point we need to have access to a surge workforce, if indeed we do have an infection and we need to self isolate cohorts of staff. To be honest, that is actually very logistically challenging for organisations to work out how to do that and how to do that in consultation with clients and families and of course the industrial requirements around staff.
DR MELLIFONT: Mr Richardson, I want to ask you the same question and preface it by observing that whilst about 26 per cent of your staff are casual, at Pascoe Vale, where there was a COVID positive case, around 6 of 11 of Aruma's employees were casual, with another five agency staff. Can you speak --- again, same question, it's the challenges faced by casual staff.
MR RICHARDSON: Certainly. I support Claire's comments to start with, so I won't repeat those. At Aruma, one of the extra challenges that we have faced in Victoria, as we have taken over other services from the Victorian State Government last year, which includes the home at Pascoe Vale, there have been early retirement programs available to the staff, who are currently still government employees until the end of the year, and also hiring freezes. So that has exacerbated the challenge of having a full complement of largely permanent staff in supported living settings, which is our preference.
In addition to Claire's comments, I would add another challenge around casual staff is that whilst we have knowledge of where they have worked on our account, you are never quite sure of where they may have worked on other people's account and we are not legally able to oblige them to disclose that to us. So there are some extra challenges.
The final comment I would add would be that the funding model under the NDIS, which is a wonderful and very welcome reform, does tend to drive a more fragmented and casualised workforce in order to maintain sufficiently high levels of staff utilisation to be able to provide a service for the level of funding available, particularly the inflexible support type settings.
DR MELLIFONT: Before I proceed with a few more questions for each of you, can I just indicate to the Commissioners that I probably have another five to 10 minutes of questions and then could I ask for a very brief break and then to hand most likely directly over the Commissioners, if that's convenient.
COMMISSIONER SACKVILLE: Yes, that's fine. Thank you.
DR MELLIFONT: Thank you.
Ms Robbs, can I start with you: with the benefit of hindsight, and hindsight is a very fine thing, what would you do differently?
MS ROBBS: So with the benefit of hindsight, one of the first things I referred to earlier was around our support for people who English is not their first language and that definitely is something that we needed to do better and need to do better.
The second one is that in the urgency to act and to try to communicate, for our clients and our families we did more communication than we did consultation. So I appreciate that for all of our team there was an urgency to act and it was confusing and people were doing their best, but actually in hindsight I think we could have done better to put consultation mechanisms in so that we actually better balanced consultation and communication with our clients and their families.
The third piece in hindsight is that we have worked really hard to have a thorough and comprehensive response to infected and positive cases. In hindsight it really would have been good to have more nursing and medical support, that we have received recently in Victoria, to some of the positive matters, and actually that would have been more helpful in those previous matters and certainly something we want to be doing better in the future.
DR MELLIFONT: Thank you. Mr Richardson, the same question to you, please.
MR RICHARDSON: Yes. I reserve upfront we have learnt a lot, as has everybody, so there's several lessons that we've already learnt. For example, we've already discussed having a specific pandemic response plan. That's clearly something that we will maintain as an organisation. Like Life Without Barriers, we will work to refine our communications as well, particularly around CALD and Aboriginal and Torres Strait Islander peoples, and consultation, I think we did that well at the micro level. We want to look at ways we can do a lot better at the macro level. Another important area for us would be to improve workforce design, both at an establishment level and surge level. I mentioned before in Victoria we're still seeking to build the workforce we want going forward, but we want to reduce the number of sites on average at which staff work. That's a real juggle that impacts people's wellbeing, their lifestyles, our industrial obligations, but we're working through that.
I think we've been very happy with our rapid response team process who've led the on the ground response. We would document that more strongly in advance, capture information in advance for volunteers and profiles. So we would like to have those more easily ready to turn on in any location, including across borders.
We would apply the lessons that we've learnt to a whole lot of policies, protocols, staff training, infection control. I think this unfortunate experience of the pandemic that we're all going through has helped us raise the bar across the board on infection control and droplet measures, for example. We want to maintain a higher standard
going forward. Pragmatically, every time we have a COVID notification, we need to capture a great deal of information for our own look back and tracing as well as for government agencies. There are six notifications to various government agencies we need to make every time there's a positive case, so we actually update our systems and forms to automate more of that.
Then there's a whole lot of practical things. We never thought through how do you support your residents in a deep cleaning exercise when you're not allowed to be in the house while it's being deep cleaned or it ruins the efficacy of it? So a whole lot of little practical things as well. Probably the two final ones I'd add and they're related one is we would allocate a whole lot more administrative response, administrative support to our response teams. The administrative load of responding to a pandemic through sudden roster redesign, surge staff, sourcing, local communications, look back tracing, managing the access restrictions, consulting, isolating quarantine it is a heavy administrative burden and the related point around that is, we have some incredibly capable and dedicated staff doing amazing things. They really do work incredibly hard to keep our customers and each other safe. They're at risk of burnout and so we don't have an answer, but we do want to work out how we address staff exhaustion and potential burnout through a crisis like this that is going for such an extended period of time.
DR MELLIFONT: Thank you both for that. I'm going to ask my last question to each of you. It's going to be a double barrelled question which lawyers are not supposed to do, but I'm going to do it anyway and it's this: I want to ask you what your wish list would be, your wish list to Commonwealth Governments and agencies moving forward and in the context of that, I want to ask you about whether it's okay from your perspective just to carry across aged care guidelines, or do you need a bespoke response for the disability sector? Ms Robbs?
MS ROBBS: I'll take the second question first, if that's okay, because that's easier to answer and that is we definitely need bespoke. The disability sector is not a subsection of the aged care sector and although there are similarities, there are obvious differences as well and I think that really needs to be acknowledged at all levels of government and into that, practical operational directions as well, included all the way through to the national pandemic plan and the consideration of people with a disability within that. So, no, we can't just take aged care guidelines and add the word "disability" and then be fit for purpose. It's more than that.
To respond to your first question, if I had a wish list, I would like us to make some things better now, and some things will take a little bit longer. I think now, in hearing some of the witness statements from this Commission also and my own experience, I think we have to address the PPE supply and cost. It is causing stress. It's not that government aren't trying to help or other people aren't, but it is a real worry and I think it can be fixed.
I think we need to deal with the ongoing confusion around information and guidelines provided on what to do and how to keep people safe. Again, everyone is
trying and everyone is to keep in communication, but I really think we need to keep our eye on the clear, simple and practical directions for people with disability and providers to be able to follow and I do not believe we've hit the mark on that. Not for want of trying.
I also think that there needs to be more support provided to providers. We can't expect all providers to be able to know exactly what to do to support people through this pandemic. We have not experienced it before. We can't possibly know everything we have to do and if you have both Aruma and Life Without Barriers on here, as large providers with resources and relationships to lean on, and we have struggled, then I think we need to work out between Commonwealth Government, State Governments and the sector has to step up here in a leadership role too. What do we need to do so we share resources, share information, actually have a very assertive response to positive cases that people can rely on, and that we together consider the workforce challenges that Andrew spoke well to and consider the challenges around training and supply and particularly surge workforce too. And what are we doing so that people with a disability are supported by workers who know they're valued and properly compensated and supported for their work?
If you could indulge me with one more point before you go to Andrew. I also think that in the longer term, I work closely with Commonwealth and State Governments in the panels and groups that you mentioned at the beginning of the hearing, and generally in my role, because we're a larger organisation and I know that they're working really hard. I know they are. I think that one of the things in hindsight that I would really have on my wish list is that we establish an operating model for us all for a pandemic. We had an operating model developing for the NDIS before we came into the pandemic around the roles of the Commonwealth Government, Safeguarding Commission, State Governments, the sector, and how all of that needed to come together, and we're the voice and views of people with a disability and their families sat front and centre in that. We were only just developing that, because that is new in the NDIS although it's been around for a few years, it's still new. I think we brought that into the pandemic and it's not fit for purpose as an operating model, so my wish list would be that we're able to have a proper, coordinated, operating model for a pandemic with all of those agencies with clear roles, clear guidance and communication and a coordinated approach so that we don't have people with a disability, their families, workers and organisations experiencing the level of stress and anxiety that they have and that all of the government efforts are targeted to the things that really will make a difference.
DR MELLIFONT: Thank you. Mr Richardson, I'll move to you. I'm going to ask you a global question first. Do you agree or disagree with what Ms Robbs just said?
MR RICHARDSON: The global question comment would be I broadly agree.
DR MELLIFONT: Okay. Now please answer it yourself.
MR RICHARDSON: Okay, and thank you for asking Claire to go first, because it
does give me a little chance to scribble down a few things, but I would like to make the point quite strongly first that the disability sector is fundamentally different to residential aged care and it needs a specific approach. It can't just adopt an aged care approach. We're supporting people over a much longer time horizon, typically. People of all ages. Someone with a disability may need support for 80 years plus so it's quite a different context. It's much more about choice, control, human rights in all aspects of all life, not just a combination. It's relationships, it's work, it's education and learning, it's community engagement and, contrast to residential aged care, people with disability, except those who are unfortunate enough to still be living in residential aged care, live either on their own or in family groups or in small group settings such as supported independent living. It is a very, very different model and the other reason why I think it needs a very different policy approach is that the focus primarily should be on prevention and best practice, not just on response and a health response.
And so disability support organisations such as Aruma and Life Without Barriers and many others would really value additional helpful guidance and support to minimise the risk of people contracting COVID 19 or other infectious diseases in the first place and to provide that type of practice support, it's a very different context to a residential age care model. So apologies for the long list. I'll try and go quicker on my wish list.
The first is simply a disability sector specific nationally consistently, well resourced response to this and any future pandemic. So things like a single source of truth and information. Not conflicting information from multiple agencies at both Federal and State level. It's not fun chasing the hyperlinks trying to find out something, you end up back where you started. I think we need clear, consistent direction as part of that for both providers and people with disability.
We've talked about day program and other types of things that were very confusing. As I said, we want a proactive focus on keeping people well, on infection prevention, on upskilling, not just responding when they're sick, and a range of strategies under that to mitigate risk. You touched before on the usage of high end PPE. Staff are not normally trained or expected to safely use high end PPE and a range of other things under that. As part of that, disability support work must be recognised as an essential service. It is fundamentally disrespectful to people with a disability to think otherwise and we've heard some of the stories already over the past couple of days why that is just so critical.
That would bring with it things like guaranteed access to appropriate PPE, priority access to testing for staff and customers. People get turned away from testing, trying to do the right thing. Ease of travel during lockdowns and across borders and the like. Ability to purchase essential supplies when there's rationing. The third thing I think we should have in addition to that consistent response and essential service clarification is access to scalable outbreak teams, expert advice and specialist in home testing as a matter of course available in all jurisdictions. I commend the Victorian Government for their work in that area over the past couple
of months and suggest that's a potential model that should be consistently rolled out across the country.
I agree strongly with Claire that we need a different or at least a complementary funding mechanism to support organisations in a pandemic context. We love the NDIS. It's a great social reform for people with disability. But at the end of the day, a piece rate, fixed price, transactional market model for the provision of human services such as disability service tends to break down in a pandemic. And finally, I would argue that we need a plan to support people with disability to reintegrate back into the community, to be fully included again in economic life and in their communities as we head into recovery and whatever the new normal may be and it strikes me that the National Disability Strategy which is due to be renewed and in a consultation process at the moment really could be a vehicle both for upping the ante in terms of a dedicated targeted response to future pandemics, but also in planning for this very difficult journey that a lot of people with disability are now going to have to go through as they seek to re engage with the workforce or re engage with the community, or with education, or whatever it might be. Quite a long shopping list, but thank you for asking me.
DR MELLIFONT: Thank you. Chair, might we adjourn briefly. I'll do my best to aim for 4.15, if that's okay.
COMMISSIONER SACKVILLE: We can. What's going to happen between 4.10 and 4.15?
DR MELLIFONT: Can I just have a moment? All right, I've just been advised that we don't need the break and can I hand over to the Commissioners for any questioning of these witnesses.
QUESTIONS BY THE COMMISSION
COMMISSIONER SACKVILLE: Commissioner Bennett?
COMMISSIONER BENNETT: Thank you, both. I'd like to first ask Mr Richardson, in your submission there were questions 6 and 7 that you answered on page 6 and 7 of your submission and questions 6 and 7 were going to go to restrictions on the way people, the residents of the group home lived and what restrictions were placed on them. Do your answers, in fact, go to quarantining, what you did when there was a quarantining. I want to know if there were no cases, as set out in question 6, confirmed infections or international travel or contact, were there any other restrictions that limited change, the freedom of movement of residents within their homes and within the community in accordance to what other citizens were allowed to have?
MR RICHARDSON: Thank you, Commissioner. The broad answer is mostly no
and a little bit of yes. Apologies for that. We strive to maintain all of our residents as having the same rights as any other member of the community. One of the challenges is that when you have people living together and someone is suspected or confirmed of having COVID 19, then it's in everybody's interest to impose self isolation, or if someone has COVID, then quarantine and within a group living setting, depending on the nature of the physical property, that can be quite a challenge.
So in some instances we have had to restrict some people to this part of the house and other people to that part of the house. It's easy when there might be a couple of villas or a few units that make up a supported living setting, but when it's a more traditional house, that's when we have imposed additional restrictions to help people isolate or quarantine, as the case may be.
COMMISSIONER BENNETT: I understand if there was a suspected case or if someone was not well, but if all the people in the bubble were still no sign of something that was as set out what was required, were they still able to exercise, to move within their home, to go out to the restricted shopping if they wanted to? Did that occur?
MR RICHARDSON: Yes, Commissioner, it did, consistent with our care facilitates directions, whilst from time to time we did restrict some of those activities for a number of people and the duration of visits and those types of things.
COMMISSIONER BENNETT: And those restrictions, they were in accordance, you've said, to public health orders. For group homes, for the residents in those homes, were they the public health orders that applied to the broader community? Because I've read through some of the attachments and I haven't been able to find what you've provided about restrictions, saying that someone should stay in their room unless there is a possibility of a sickness, waiting for a test result, a confirmed case. We've heard here that there were some homes where people were just told to stay in their rooms. And you're saying that's
MR RICHARDSON: No, I'm confident that that was only in cases where there was a suspected or actual case of COVID 19 in the home. Either them, or another resident.
COMMISSIONER BENNETT: And they would have been reported to the Quality and Safeguards Commission?
MR RICHARDSON: I'm not sure, Commissioner. I apologise. Could I take that question on notice?
COMMISSIONER BENNETT: Okay. Ms Robbs, you said you were much clearer, you said to questions 6 and 7 "No", which is page 9 of your submission. You just said "No". So you're saying that unless there was a confirmed case, awaiting a test or that there'd been contact which could have been through a family member or
some concern, you made no restrictions on the residents in their own homes in accommodation?
MS ROBBS: Correct.
COMMISSIONER BENNETT: Did that include them being able to go out to exercise if the rest of the community was able to and to go shopping?
MS ROBBS: Yes, the same as the rest of the community.
COMMISSIONER BENNETT: Thank you.
COMMISSIONER SACKVILLE: Commissioner Galbally, do you have a question?
COMMISSIONER GALBALLY: No, thank you. Thank you.
COMMISSIONER SACKVILLE: Thank you very much. We have heard, as you no doubt are aware, of concerns expressed by people with disability about the casualisation of workforces, of the workforce for carers and that includes people of course in group homes, people in their own homes sometimes. I have seen the answers on the proportion of the workforce that are casual employees, so that in the case of Mr Richardson, I think you indicate that Aruma has, 26% of its group home workforce are casual employees and of those, 23% have been employed for less than six months and there is a gross turnover of casual staff of 32% per year. Why is there such a high proportion of the workforce that are employed as casuals?
MR RICHARDSON: Primarily I think, as we said before, because it is tough to recruit staff to do disability support work, so our preference as an organisation is, in supported living, to always hire permanent staff and we routinely survey all our casual staff to ask if they wish to convert to either permanent part time or permanent full time status. A lot of workers might be university students, for example, doing an Allied Health degree, where it's actually good for them, I think, for their professional and career development to work in disability support for a period. And whilst the percentage of workers is high, the actual percentage of hours worked, as you'd understand, is considerably lower simply because casuals on average work substantially fewer hours than a permanent member of staff.
COMMISSIONER SACKVILLE: Did you observe, or your staff observe the kind of anxiety that has been referred to in the evidence among people with disability because of the discontinuity in carers for group homes and perhaps in other forms of accommodation as well?
MR RICHARDSON: Yes. I'm not aware, Commissioner, of any instance where we haven't provided a service, but there is a lot of concern, a lot of worry and as Claire mentioned a little while ago, as soon as you have a suspected or confirmed case of COVID 19 in your staff, then suddenly a whole staff team needs to be isolated, a new staff brought in and whilst we do our best, they will not know the customers or
have such strong relationships with the customers as the staff that they know better and are more comfortable with, so there's a high degree of stress and worry, I think, amongst a significant proportion of front line staff and also people with a disability who we're supporting as they navigate the coronavirus.
COMMISSIONER BENNETT: Could I follow up on the casualisation question? Casualised workers are not entitled to sick leave and holiday pay and those arrangements, so particularly sick leave, if they're not well, they don't get paid, where if they were permanent part time workers, they could have agreed hours, but they would be entitled to those employee benefits, wouldn't they?
MR RICHARDSON: Absolutely.
COMMISSIONER BENNETT: Have you looked at a model where increasing your permanent part time workforce could bring stability and make those workers feel more secure during such an issue as a pandemic, or other emergency situation?
MR RICHARDSON: Yes, and we do very genuinely seek to encourage casual staff to convert to permanent part time, or full time if they wish, but permanent part time would be the normal path. For a variety of reasons, it could be the 25% loading, more often it's lifestyle and flexibility with family or studies when courses change each semester and the like. A lot of people don't accept that. I would, however, note that we have introduced a special leave policy at Aruma and we do give casuals with at least three months' service now two weeks of paid pandemic leave, because the risk of having people turn up to work when they don't feel well, because they're trying to pay the rent and feed the family, is just too high.
COMMISSIONER BENNETT: How many of your workforce are permanent part time and how many are permanent full time?
MR RICHARDSON: We have I can't think of the numbers off the top of my head, but it's approximately twice as many staff are permanent part time as permanent full time, so we would prefer that ratio to be the other way and we're seeking to move it there over time.
COMMISSIONER BENNETT: And consequentially reduce your casual workforce and agency workforce?
MR RICHARDSON: Yes, yes. Our goal would be to have absolutely no agency workforce. It's a goal that we have not yet achieved.
COMMISSIONER SACKVILLE: I was going to ask you what measures you took to alleviate the anxiety that people with disability in your residential homes were experiencing by reason of these extraordinary events occurring during the pandemic?
MR RICHARDSON: A range of ways, and again, when there's an ongoing relationship between stable staff and our residents, and that's a huge help, and when
that relationship includes a strong circle of support, so friends and family and others in a person's life. But one thing that we have done is make extensive use of social stories. For example, to help people understand in pictorial and a very simple English story telling way why you might wear a mask, or what it's like to have a COVID test, or why you can't do this or you can do that. So there's no perfect response but we've pursued a range of ways as best we can to help people feel as comfortable as they can.
COMMISSIONER SACKVILLE: I was really directing attention to the specific forms of anxiety and stress associated with discontinuity in staffing that would follow, for example, when people or staff members had to isolate themselves, or were removed for some reason from the roster. The evidence indicates that this was something that people with disability find often have found extremely stressful and difficult. Was there any form of support in relation to mental health?
MR RICHARDSON: We have a free employee and customer assistance line that people can call if they want advice, or just to have a confidential conversation. The challenge with that is that that's not necessarily readily accessible to a significant proportion of our customers who may not feel able or comfortable to make those types of contacts. I think the other thing that we've sought to do is to maintain as much continuity as we can.
One of the benefits of having casuals who've worked across more than one service, for example, is that they do become known to a broader cohort than staff who only work at one service and typically, particularly in Pascoe Vale, where a major infection location to date has been, to have the coordinators and managers and other people, practice advisors and the like, who those people know still in their lives has helped, but it's an incomplete answer. It's a challenge.
COMMISSIONER SACKVILLE: Yes. Can I ask you, Ms Robbs, to address the same questions? I notice that your statement indicates, if anything, a higher ratio of casualised workforce and a turnover of 40%. Do you give the same answers in effect that Mr Richardson gave as to why those figures are as they are?
MS ROBBS: Yes, I'd agree with Andrew's comments and the only piece I may add is just to put some more fat around Andrew's comment about the hours worked, that the casual numbers are high on head count. The average hours worked by permanent workers in Life Without Barriers is 85%. So although the casual numbers are high on head count, they don't represent a large percentage of the hours worked across our group living program. And the only other piece that may be helpful to build on Andrew's comments, which I agree with, are that we have also taken steps, really from experience from positive cases in Victoria, to intentionally make sure that for every house we have a staff member who knows all of the clients within that home. We picked one for each house and relocated them to another house or another duty so that in the event that there is a positive case in that house, we know that we're able to put someone into that home that knows those clients really well to be able to provide that guidance and support to whatever team come in if we do need to isolate
the rest of the staff in that house and that's something that we're hoping helps manage the understandable anxiety for clients when the house staff are isolated, people are wearing PPE in the home and they don't have familiar faces around them, which we perfectly understand must be very stressful.
COMMISSIONER SACKVILLE: In the schedule to your further witness statement, I think there are 10, perhaps more, 11 or so examples where a staff member tested positive at one of the group homes and then there was a process of testing staff members and residents who had come in contact in some way with a staff member who had tested positive. I assess from the information being provided, as it happened, nearly all the tests of staff members and residents proved to be negative. But during the period of testing and waiting for results and so forth must have been extraordinarily difficult for residents. What steps specifically were taken in these 11 instances to alleviate that stress, that anxiety that and I take it that some of these people were people with cognitive disability?
MS ROBBS: Yes. So from the point where there are suspected matters, so someone goes off to be tested, be that a client or a staff member, then we do then ask all the staff to wear PPE as though it was a positive case and that's part of our efforts to enable people to move around the home freely, but actually be able to keep clients and staff as safe as possible from further infection. Now that understandably raises concerns for the clients, because they're supported by someone with masks and gowns and everything on. So the things we've been trying so far is really talking with all of the clients before that ever happens and for the last few months about what that's like, showing them the PPE, letting them wear the PPE if they want to, looking at staff in PPE and trying to really explain to them about why and how that's going to work using the Easy English tools or other communication methods that are really best for those particular individuals, really just trying to give them a sense of what might happen to try to mitigate some of that anxiety.
And then we've also got videos of people in those homes to show people so they know what it might actually be like if it happened. Then when it does happen, we do work really hard with the incoming staff and with the families supported by those technology and digital tools to recognise that there'll be heightened anxiety for clients. One of the things that makes us think we've been somewhat successful in that, notwithstanding it must be very difficult, is that we actually wondered if we'd see an escalation in the reporting about anxiety driven behaviours from some residents if their house was isolated, and we have not experienced that in the houses that have been isolated and wearing PPE. So we're hopeful that that's a sign that there's not behaviours resulting from that anxiety or concern for those residents.
COMMISSIONER SACKVILLE: Do you have staff who are specifically trained to address this kind of, I imagine, exceedingly difficult situation, whether they be psychologists, social workers or others with specific experience and training in assisting people with disability in these kinds of stressful situations?
MS ROBBS: So we do have staff within Life Without Barriers and we also do
access services with those sorts of expertise external to Life Without Barriers too. So clinical services and counselling services as well, and we certainly encourage them to be accessed at any time that the clients need and particularly through this lockdown period and if clients do have to self isolate.
COMMISSIONER SACKVILLE: Were any of those services utilised in the 11 cases referred to in the schedule?
MS ROBBS: I would hope so, but I might need to take that on notice and check that, but I would certainly hope so.
COMMISSIONER SACKVILLE: If you wouldn't mind checking that, that would be quite helpful, thank you.
MS ROBBS: Yes, of course.
COMMISSIONER SACKVILLE: If I can follow up, Mr Richardson, we're getting very late and I think it's probably time for us to terminate the proceedings for today, but the same sort of question to you. Were resources of that kind available to you in similar situations, and were they utilised?
MR RICHARDSON: A very similar answer to Claire's response. We are more dependent on external clinicians and therapists, but we do have a small internal cadre who provided that type of support. The other thing I would flag just for clarity is not everyone in the staff team at a house when there is a suspected or confirmed case needs to self isolate. Because of the nature of shift work and patterns, it's nearly always a subset of the house have not had recent contact. So there is that extra level of continuity which can exist.
COMMISSIONER SACKVILLE: Thank you. Dr Mellifont, is there anything else that you would like to ask, perhaps arising out of those questions?
DR MELLIFONT: Nothing further, thank you.
COMMISSIONER SACKVILLE: Of the representatives of the two organisations from which we have heard, is there anything that you wish to contribute to our discussion?
MS MCLEOD: Nothing from me, thank you, Commissioners, on behalf of Aruma.
COMMISSIONER SACKVILLE: Thank you.
MS MICHELMORE: Yes, nothing from me either, thank you, Commissioners, on behalf of Life Without Barriers.
THE WITNESSES WITHDREW
COMMISSIONER SACKVILLE: Thank you very much. All right, does that mean, Dr Mellifont, that we can conclude the proceedings for today?
DR MELLIFONT: Yes. See you at 9.30 in the morning.
COMMISSIONER SACKVILLE: What time are we resuming in the morning?
DR MELLIFONT: 9.30.
COMMISSIONER SACKVILLE: No rest for the wicked.
DR MELLIFONT: None indeed.
COMMISSIONER SACKVILLE: Thank you very much. We'll adjourn until 9.30 tomorrow.
HEARING ADJOURNED UNTIL 9.30 AM ON FRIDAY, 21 AUGUST 2020