This session was part of the Disability and Disaster Resilience Forum held online on 27 august 2020.
Overview
Melissa Hale, DARU Coordinator, introduces the forum before handing over to the Victorian Emergency Management Commissioner, Andrew Crisp who provides the opening address.
Key national frameworks, such as The National Disaster Risk Reduction Framework 2018 and The Australian Disaster Preparedness Framework 2018, have been tested and found wanting. People with disabilities require governments – and other partners in emergency preparedness, response and recovery – to do better.
Professor Anne Kavanagh, Chair in Disability and Health, Disability and Health, Centre for Health Equity, University of Melbourne, then takes the stage, measuring the protections outlined in the policy framework against the experience of people with disabilities, particularly during COVID-19, and provides pointers to where the shortfalls might lie.
Links to the resources mentioned in the presentation can be found at the bottom of this post.
Transcript & Audio
MELISSA HALE:
Good morning everyone welcome to the DARU Disability Disaster Resilience Forum. My name is Melissa Hale, and I’m the coordinator of the Disability Advocacy Resource Unit and it is my pleasure to bring this forum to you today.
Before I begin, I would like to acknowledge the traditional owners of the land on which we all meet and pay my respects to their elders past present and emerging.
We are now living in a new world with a new normal due to COVID-19. Like all of you, DARU has had to review its program and the way we deliver our programs to you. We know that the discussion we are about to embark upon today is so critically important. We are pleased to be able to still bring this to you safely and online.
We encourage your active participation today. Please type your question in the Q&A box and at the end of each session I will be facilitating a Q&A session with our presenters. If you are on social media please use the hashtag DERForum to keep the conversations going. If you need to access closed captions for today please see the chat box for the closed caption link.
I hope you’ve all settled in comfortably with your blankets, slippers and warm cups of tea because we have fantastic presentations and some great presenters. In true DARU style, we also have some fantastic music for you to jump up and dance in your spaces in the stretch breaks.
So let’s get to the program. The purpose of this forum today is to explore priority issues in emergency management for people with disability and look at why responses are failing to be consistently inclusive in spite of the rights based framework and policies that are in place.
This year is a strong contender for the year of the disaster. We have seen the longest drought, highest floods and most intense fires on record and a global health pandemic that continues to wreck social and economic havoc.
Time and time again we find the needs of people with disability are overlooked or at best, only considered in a piece meal manner. For example, when COVID-19 hit it took 70 national state and territory disability organisations to sign an open letter calling on all levels of government to consider urgent action that will protect the lives of Australians with disability before public health officials scramble to engage.
As a community concurrently navigates bushfire recovery and COVID-19 response we have a unique opportunity to come together to centre the lived experience of people with disability and reflect on, learn from and advocate for improved responses to people with disability in times of disaster.
We could spend a lot of time unpacking the reason for institutional neglect. What we really want to know is in the context of emergency preparedness response and recovery what has to change to ensure the rights of people with disability are embedded in a meaningful way into all government programs, plans, strategies and policies. How do we clear our path to full inclusion?
I would first like to hand over and hear from Victoria’s Emergency Management Commission Andrew Crisp who will speak to the importance of the discussion today.
ANDREW CRISP:
Hi, Andrew Crisp, Emergency Management Commissioner. Thanks so much for the opportunity to join you today for the start of this really important workshop.
It’s never been a more important time for us to talk about disasters, about emergencies, about resilience, but particularly in terms of the impact it has on people with a disability.
We’ve all been tested in so many different ways in the last few months when it’s come to COVID. I know that has also been the case in relation to people with a disability. I know there is more we can do and that’s why a workshop like this is really important for me to listen to the outcomes and I look forward to that opportunity and to have a follow up conversation with you.
I must admit it really hit home to me when I went to California last year when I was part of an Australian delegation looking at recovery from catastrophic events. As part of that trip we went to California and met with California emergency services and had a great presentation from their executive lead in relation to disability.
It was a person in a wheelchair. This person gave such insights in relation to his experience working in that particular role. He was quite engaging and told a really good story and told a number of stories to make that point. I remember one where he went out to a fire ground where a relief centre had been established. He could get into this particular facility but he couldn’t use the bathroom because he was in a wheelchair it wasn’t set up for him to use.
It was a simple story but also a really strong story and a reminder for me about things that I take for granted, I know I need to do more about. Again can I thank you for coming together particularly during COVID and it is important we continue to engage and to learn. I really do look forward to learning the outcomes of your discussions here today, thank you.
MELISSA HALE:
Thank you Commissioner. This forum is certainly not going to be the type of forum where we all talk about the problem, turn off the computer and forget about it. We will package up all that we have learnt and take from today and put this in an issues paper that the sector will use to advocate for real and practical changes.
Let’s get to work – what are we working within: Peer national framework such as the National Disaster Risk Reduction Framework 2018 and the Australian Disaster Preparedness Framework 2018, have been truly tested. People with disabilities require government and other partners in emergency preparedness response and recovery to do better.
What about the NDIA, how effective has it been as the go to agency for people with disabilities in crisis. How have those people who have faced extra disadvantages faired such as people with complex communication needs, live remotely or are illiterate.
Professor Anne Kavanagh measures the protections outlined in the policy framework against the experience of people with disability particularly during COVID-19 and provide pointers to where the shortfalls might lie. Please
welcome Professor Anne Kavanagh.
PROFESSOR ANNE KAVANAGH:
Thank you for that introduction
I just wanted to acknowledge the traditional owners of the land on which I’m currently residing, the Wathaurong people and I acknowledge their owners past and present and any Aboriginal people in the audience today.
I just introduce myself as my background, I trained in medicine originally and then in public health as an epidemiologist. Now I never have to explain to anyone again what an epidemiologist does or is which is cool because before everyone thought I studied skin. Having said that I’m not an infectious disease epidemiologist, which is what you’ve been hearing from a lot in the media.
I thought I would start by outlining some of the basic principles. I know you have heard them come at infinite over the last six months but I thought I’d just remind us because I think then we can understand how the response for people with disabilities has or has not been ideal in terms of how we’ve responded from a public health perspective.
I’m going to start by talking about COVID, which we all know arose in late December the first case in Wuhan in China. We had our first case in late January from a return traveller. COVID, actual name of the virus is SARS COV2 severe acute respiratory syndrome and it’s caused by a corona virus, which is a virus like the common cold virus. This particular strain is particularly infectious and has a high case mortality, which means more people die from it than obviously the common cold.
The condition you get, COVID-19 is the disease rather than the virus. The main way it’s transmitted is through droplets and we’ve heard a lot about aerosols and droplets, and different types of transmission and really when we’re talking about droplets we’re talking about two types of droplets.
One the respiratory droplets that are kind of bigger and we were early on thinking that was the main way of transmission for up to ten micrometres which are transmitted through direct contact or indirect contact with services and tend to be within one metre in terms of direct contact. Aerosols are a bit smaller and last in the environment for a longer period of time and can travel much more than five micrometres.
Early on, we thought that the main source of transmission was through the direct contacts, the larger droplets, but as times gone on there has been more evidence to suggest there also is aerosol transmission.
The main ways in which public health response looks for COVID-19 is we’re going back, it’s a pretty basic response really, it’s about reducing peoples contacts, minimising contacts with other people to reduce infection. We’re really talking about physical distancing. It’s the we keep apart and we don’t mix so we’re less likely to get it transmitted between us and we reduce transmission and exposure through the travel and border closures or closures of things like schools, gyms, workplaces.
We have as we’ve learnt strict infection control and personal hygiene practices from as you’ve already probably got frequent hand washing or sanitisers and really what we’re looking for is a very strong cooperation from everyone in the community to take part in trying to reduce risk of transmission. This isn’t an individual this is a collective response we’re about protecting each other as well as ourselves in a pandemic public health response. That’s really what underpins a public health response.
Now I’m going to talk specifically about some of the issues for people with disability. Obviously, we’ve talked about these a lot and a lot of these were brought up in the commission last week for those of you who heard a lot of that.
The first thing that comes to mind is many people with disabilities are reliant on external supports perhaps to provide personal care and so forth, which requires close contact so the capacity to physically distance is more difficult.
They may in fact be having multiple people helping to provide their care increasing again their networks and risks of transmission. There’s also the risk of sometimes either living, recreating or working in a group setting, a workplace, a home, or potentially a day program.
All of those increase the risk of the number of people and the close contacts. Of course in terms of us preventing our own risks we need to understand the public health information and very early on as we will speak of there was not much effort really put into making that public information accessible.
Then there are additional issues for first nation’s people with disability and culturally and linguistically diverse communities. We also have higher levels of what people sometimes refer to as comorbidities, diabetes, respiratory conditions and so forth that put us at greater risk if we become infected.
As we’ve talked about a lot previously the health sector tends to have a poor understanding of health and the skills needed to respond and including underlying vices and discrimination which I won’t go into today but clearly put all of us at risk whether or not we have a underlying condition.
I’ve just got a bit of a timeline here because I think it helps us remember. I think this is a story, I’m telling it as a narrative. It tells us the power of advocacy, the power of advocates working together, the power of advocates working with academics, the power of the sector working together to start to mobilise a response here.
I just want to highlight a couple of things on this slide. The first is the 17th of February the Australian Health Sector Emergency Response Plan for COVID, which clearly did not include people with disabilities so that was not an oversight; we can talk about what that was.
I’m going to talk a little about our role as academics in trying to help mobilise a disability response in COVID. I’m a Co-Director of the Centre for Research Excellence in Disability and Health with Llewellyn from University of Sydney. As public health academics and disability researchers we thought we were in an ideal position to start to influence how government thought about their response to people with disabilities. On the 16th of March we released a statement, which I will come back to. There’s a range of other things that happened. There was a joint disability sector union response and a further response that we made.
I just want to highlight a couple of things there in relation to the NDIS on the 21st of March outlining things like potential for telephone planning, extensions to plans, trying to come together with an action plan to ensure on going essential supports, shifting capacity building to core and in my experience that hasn’t been possible.
I would be interested to know whether other people have found that possible. Proactive outreach to what they referred as is vulnerable participants and a 10% loading for services which I think and I’ll come to in relation to what kinds of diverse incentives that might bring for services.
Just to go into a bit more detail about what we said, I need to be conscious of time but our original statement was to call on all parts of government. I think this is critical, we need a commonwealth, it’s commonwealth agencies, the NDIA, the National Quality and Safeguard Commission, The Department of Health, The Department of Social Services. Then in the state’s health, various disability sections of the department, of government departments and potentially regulators within each state of services.
This is a complex response. We acknowledge there was a real problem in the health sectors under preparedness we emphasised the need to accessible testing, tele health a potential dedicated hot line and accessible information and real thought in how we continue to support people with more complex needs in the context of if they need to quarantine or self-isolate. We called for this at all levels of government.
There was some responses but we remained concerned on the 24th of March and in particular in this statement we argued for the need of a national committee that reported to national cabinet as that was established in terms of emergency response in March but there needed to be a plan to think about how we’re going to protect the health and wellbeing of people with disabilities during the pandemic and beyond.
One of the things that as public health researchers we were very concerned about was the lack of an integrated public health disability response. I think this is probably my enduring criticism of the way we’ve gone about this. I think there’s huge improvements but there’s a long way to go.
At that stage we were concerned again about accessible testing, we were wanting up scaled access to tele health. We thought that the NDIA and National Quality and Safeguards Commission needed to concentrate more on a public health response and the NDIA response at that time was very much on processes.
There were some opportunities through their reach out to reach people with disability who might need more information, might need more supports might need some assistance with a range of things beyond disability response.
We asked for the MBS item on vulnerable populations, which is a special MBS item to develop health care plans, to include people with disabilities as a vulnerable group. I’m not going to talk – I know that’s not something that’s contested but it’s actually in the MBS item so it includes people with various other groups Aboriginal, Torres Strait Islanders and so forth. We saw that as an important item which did happen.
We talked about disability services needing to be an essential service. We asked for reach out to self-manage clients who might not get information through their services and we also asked for things like the information hotline, pandemic leave for support workers so they don’t go to work when sick, some local coordination and compensation. And for some direct outreach to services to make sure they were abiding by the public health directives of their state.
It’s fair to say the National Quality and Safeguard Commission at that point had released provider alerts and so forth but we were really really trying to push the need to outreach directly to services rather than have them self-regulate if you like. I’ll come back to that point and wait until an incident happens but rather be much more proactive in terms of enabling a public health response.
As I’ve said before this is a once in a hundred year event and none of us were prepared. Disability services are not health services and so they were perhaps less prepared than our hospitals and so forth. But we’ve seen the problems even in those settings. We thought the need for important local coordination at that point.
Again, there’s two responses here that are important to talk about and that was the health sector union, the unions response with NDS which again talked about some of the things that we did including pandemic leave and it’s notable that that still is not available throughout Australia, it’s only in Victoria at the moment I understand.
Issues again around potential payment of family and carers if they decide to support the person with a disability to reduce social contact and potentially compensate them for having to not be able to work themselves.
I think then in April we saw the advisory committee established on which I’m part of that committee and a number of DPOs, academics, clinicians and service providers to come up with a response to how we might manage the response in the disability context.
A number of other things happened and I’ll come back to the open letter to cabinet from the State and Disability Organisations, and I’ll come back to a couple of other things there. We had on going announcements from the NDIS around continuity of supports; we also had the various other promises in terms of extension of plans and an ongoing commitment to reaching out to participants who they defined as vulnerable.
Just highlighting the sector response, the advocacy response that is the slide on the right hand side, the media release there, which was sent to your organisations. In fact we signed onto that as a CRE. That again emphasised some of the issues around health care access importantly the need to fund DPOs particularly in this context where there was much more need for advocacy both individual and systemic. Again, emphasising continuity of service and the definition of disability services as essential services.
As I said that was the first meeting of the advisory group on the 2nd of April and finally the plan was endorsed by National Cabinet, the Australian Health Care Protection Principal Committee and then National Cabinet. This plan was based on a human rights approach, had a section of preparedness and targeted action in relation to disability and also stand down and evaluation.
You can read that all yourself rather than me go into big detail. Rather that I will do as we go on is describe what happened and what didn’t get taken up and the lessons learnt.
One of the things that I remained very concerned about post this plan was issues around congregate settings be they residential settings, day services, and supported employment. One of the concerns I had was services were – would like to comply with the public health directives yet the decision on whether they could do that was left up to the services themselves.
As I said services don’t necessarily have the requisite public health skills to be able to do that. Marry that with their capacity – with the problems of them being given a financial perverse incentive if you like to stay open given that 10% loading, which I might say was passed on to participants rather than additional funding in the plans.
I was particularly concerned. We can’t close where people live obviously. We can think about ways in which where the day programs for instance or supported employment, where a lot of people are congregating should stay open particularly when there are high levels community transmission. And whether that should be a directive rather than something left to the individual providers to make that decision about.
I remain concerned about that. I remain concerned that there’s a lack of direction around those activities particularly thinking around that areas where there’s increase of community transmission. I recognise this is a difficult problem and we need to think rigidly how we could provide alternative supports in those settings.
Fast forward to June, a lot happened in May it’s not that things didn’t happen in May but things changed in June, July, August as you know. I just want to emphasise some of the issues, I’ll come back to our paper in early June. Lots happened in July and lots happened here in Melbourne and Victoria, which meant that we no longer had a universal response and we really needed to think about a much more tailored response both for people with disabilities and the rest of the population.
Obviously we saw the shutdown of the Flemington and Northern Melbourne public housing estates going into lockdown and that I guess made us ever more concerned about what was happening for people with disabilities and prompted us to put another statement in for a much more localised response.
We can see there was recommendations for the first time around facemasks. There was some change in funding for PPE. I think some of our concerns around that was again it had to come out of people’s plans and it’s great now to know that that’s been changed and it’s not having to come out of individuals plans both from the individual perspective of not having enough but also the very complicated way of getting access to PPE if you have to rely on drawing down on individuals plans.
I’ll come to our statement on the personalisation. We’re all very much committed to the NDIS working but there are some issues that arise when you’re thinking about public health response and how your thinking about a structural policy response versus an individualised response.
I think some of the things that have arisen there, which is not unique to disability services, is the increasing nature of disability service provision in a so called gig economy with lack of worker protections and the paid pandemic leave issues. I’ll come to our survey but there were issues and worries around support workers taking sick leave and losing pay. Quite understandably for a low paid workforce.
It also as I said in relation to PPE meant there was a very complicated way in distributing that PPE through individuals rather than getting it out to services, no cost to individuals, no need to change their plans, which is very awkward in those contexts. People suddenly having to draw down on quite expensive PPE particularly if someone becomes infected. What we need is very easy access to PPE as needed rather than complicated ways of having to access it.
There are some issues there that arise and also the issues arising around needing to for the NDIA rapidly look at individual plans rather than think about a more systemic way of responding to potential funding shortfalls for individuals. That was one comment, one paper that we published on that in disability and society.
Then of course as I said we became very worried in relation to the lockdowns. We were very much thinking well a lot of people we’d always said this, if you think through the NDIA as being the key agency you miss a whole bunch of people with disabilities who also might need support either through other schemes or aren’t necessarily getting NDIS packages or they don’t qualify because they’re not an Australian resident for instance.
We were saying look we’re particularly concerned with people living in the housing flats and the lack of a coordinated response for people with disabilities in that context. We didn’t know who had a disability that became very clear, how do you reach out to people if we don’t know who they are. We were suggesting a very grass roots reach out to people within the housing commission flats and in other at risk settings to assess immediate needs, whether they were continuing to access services.
Things like did they have access to internet, did they know and understand what the personal hygiene and other practices were particularly concerned that it’s very well to have things like – I probably haven’t emphasised this enough, enough accessible information which didn’t come too late. But it’s very important that that gets to people and sometimes sitting on a website is not the way to do that.
Much more active outreach, thinking about issues around proactive health care planning for individuals, which I’ve been pushing all along, and accessible testing. We still didn’t have accessible testing at that stage.
And also thinking about the risks of people in lockdown in terms of violence and abuse but also people in congregate settings. Again emphasising the need to outreach to services, revision of PPE guidelines and audit of services.
We did make some comments around children and young people and school return but I’ll leave that for now because I’m concentrating on public health.
Of course some of you may have heard I need to hurry on I guess about a disability support workers survey which has had a fair bit if media press. I just want to emphasise a few things.
This was done mainly in June. It’s notable that nearly 60% worked in-group homes, many worked across a number of different group homes. It’s important to recognise 23% had not received any infection control training never mind PPE training and still those that had, half of them wanted more training.
Most of that had been online. One of my concerns with PPE is once you move to full PPE you have very high risk of cross transmission and you need very clear guidance on how to do that. I’ll come to health worker infections in a second and the worries about that.
Also very concerned about this workforce generally and the financial consequences for them in this pandemic and psychological consequences. Again many are referred to their difficulties being recognised in the central workforce and access to testing.
We started seeing out breaks in residential services. I think there’s at least 60 disability residential services where we have seen out breaks. We did see some announcements from the NDIA for four large experienced disability providers.
I guess one of our major recommendations from the workforce survey was we needed to think about restrictions on worker movement like we’ve seen in aged care.
We needed much more active engagement in creating a stand by health risk care workforce, response to work alongside disability workers, a surged disability workforce. And we needed to think of alternative places for rehousing if some residents were infected and others weren’t.
One of our major problems I guess was that we weren’t getting the figures on disability infections. It’s notable this is the release from Minister Robert on the 21st of August which provides some information on both communitive cases over the whole time period versus active cases. As you can see at that point there were 106 infections, 70 in workers and 36 in participants. But we know obviously communicatively there has been 164 worker infections and 93 participant infections. Obviously there’s more, that was the 21st of August.
We saw this release interestingly on the last day of the Royal Commission hearing finally to set up disability response, centrally with the Victorian and Commonwealth Governments. I’ll just skip back to this slide. I would like to say the devil is in the detail, the footnotes.
This one requires services to report cases and we know that particularly for workers that’s likely to be an under report. It also doesn’t include self-managed participants potentially, doesn’t include people with disabilities living in aged care services, in residential aged care because they’re not required – the National Quality and Safeguard Commission doesn’t regulate them. And it doesn’t include people in the so-called transfer sites in Victoria, the group homes that are still regulated by the State Government and funded by the State Government in kind which is about 45% of disability residential services in Victoria.
As I said this was a welcome announcement and the devil is going to be in the detail regarding this particularly in relation to how we create a surge workforce. This was released yesterday and I just want to draw your attention to the bottom half.
I haven’t emphasised that early on in the pandemic we might not have expected a huge number of infections around people with disabilities or workers because it was predominately dominated by overseas travellers.
Now with high rates of community transmission unfortunately we are seeing some transmission. Asian disability care workers are included together in this report.
The take home message from this is 73% in this second wave were acquired in the work setting. There’s still 16% to be allocated so if you assume the same in that group it’s about 90% of workers being infected in the workplace, something is happening that is really troublesome.
Some good things, we started to see national and state plans. We saw some health care initiatives, we had the coronavirus hotline set up and that’s been incredibly important.
Finally in Victoria we had paid pandemic leave for support workers. Accessible information has started to become available, some more flexibility in NDIS worker support. There’s worker training modules but I don’t think they go far enough in terms of a much more outreach in terms of worker training particularly in relation to PPE when evidence is suggesting quite a lot of that transmission is happening between workers donning and doffing PPE being together with staff for instance and so forth.
Outreach to services in Victoria has started to happen and that’s been great to see. In some ways I would recommend every other state think about that because it’s a little bit late now. It’s not too late but we need to be doing it proactively.
Risks going forward. No disability specific outbreak management plan. We are included in one word in the Aged Care Outbreak Management Plan but it’s become increasingly focused on aged care and is it really relevant.
Lack of reliable data. The challenges on the roles and responsibilities of the various commonwealth, state and territory agencies I think that’s still getting in the way of systemic response. It’s improved but it’s not perfect. I think as the chair of the Royal Commission said the virus doesn’t really care what jurisdiction is responsible or what portfolio.
Again, auditing of services, community outreach, still don’t have a surge workforce and training as I said before. That’s the end of my presentation and thank you for listening.
MELISSA HALE:
Thank you very much Anne that was really really insightful and it just brought home to me how much has happened over the year and how reactive we have been as a country to the issues of people with disabilities. It’s just simply not good enough. We need to be more proactive in making sure we have a better plan going forward.
We only have time for one question today. The question is going to come up now.
QUESTION:
In seeking out those with a disability in the towers, how did you work with local government?
PROFESSOR ANNE KAVANAGH:
I’d have to say we didn’t work with local government at that point. I think there are a lot of people on the ground working with local government. I think that’s incredibly important to work with local government. We didn’t personally work with local government although we were lobbying very hard through government of the role of local government. That’s my answer.
MELISSA HALE:
It seemed like maybe some of the local solutions can be some of the better solutions.
PROFESSOR ANNE KAVANAGH:
Exactly. One of the ways we’ve now moved is suggest that we need a community led response.
I didn’t get a chance to talk to that but I think Michelle will talk about that in relation to bushfires. That’s where the role of DPOs and various other community organisations are really important.
MELISSA HALE:
Thank you very much Anne. Thank you for taking the time out of your very busy schedule to speak with us today it was really really appreciated.
Now everybody we’re going to a three-minute stretch break so crank up the volume, have a little dance in your spaces and I’ll see you back shortly.
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