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Locked in: Moving on COVID action for people with disability

This session was part of the Advocacy Sector Conversations forum series held online on 26 September 2022.


Overview

When COVID-19 arrived on Australian shores in 2019, people with disability knew that they would be adversely affected.  But their very real concerns were ignored which heightened the level of fear and sense of helplessness.  From the outset, governments and service providers failed to consider what might be needed to keep people with disability safe.  In frustration, disability peak bodies joined together to endorse an Open Letter to the National Cabinet outlining what immediate action was required.  We’re now nearly 3 years on and so many issues raised have only been tinkered with at the edges.

In this session, Disability Advocate El Gibbs facilitates a panel discussion with sector leaders to consider what barriers remain stubbornly in place that exclude the voices of people with disability.  Why aren’t the people directly effected given a seat at the response planning table?  And what are the next steps to address the shortfalls in the COVID response for people with disability?

El is joined by:

  •  Tennille Lamb, National Policy Director, First Nations People with Disability Network
  • Jamie Bannister, Communications and Engagement Manager, Inclusion Australia
  • William Ward-Boas, Project Officer, VALID
  • Dominic Golding, Policy Manager, National Ethnic Disability Alliance

 

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Transcript

DAMIAN CAVENAGH:
Good morning, everyone.  Welcome to the first session of the September 2022 advocacy sector conversations series.  My name is Damian Cavenagh.  And I’m representing the Disability Advocacy Resource Unit today.

I would like to begin by acknowledging the Wurundjeri people of the Kulin nation, the traditional custodians of the land on which I’m coming from today and pay my respects to the Elders past, present and emerging.  I  extend that respect to all First Nations people here today.

We hope that you’ve all settled in comfortably and are ready for a fantastic series this week.  We encourage your active participation today so please type in any questions in the Q&A box at the bottom of the screen so your questions can be answered by the panel at the end of the session.  We’re here today to talk about the thing that’s been dominating our lives for the past three years

when COVID19 arrived on Australian shores in 2019 people with disability knew they would be adversely affected but their real concerns were ignored which heightened the level of fear and sense of helplessness.  From the outset governments and service providers failed to consider what might be needed to keep people with disability safe.  In frustration disability peak bodies joined together to endorse an open letter to the National Cabinet outlining what was required.

Now, nearly three years on and so many of the issues raised have only been tinkered with at the edges.

In this session disability advocate El Gibbs facilitates a panel discussion with sector leaders to consider what barriers remain stubbornly in place that exclude the voices of people with disability.  Why aren’t the people directly affected given a seat at the response table and what are the next steps to address the shortfalls in COVID response for people with disability.

Please give a warm welcome to the one and only El Gibbs.

EL GIBBS:
Thanks so much, Damian.  And everyone at DARU for having me and the panel today which I will introduce in just a second.  I also wanted to acknowledge that I’m coming to you from unceded Wurundjeri country and this always was and always will be Aboriginal land.

Today we will talk a bit about COVID, not really looking back but looking into the future.  So we’re in the third year now of the pandemic and it is increasingly feeling like disabled people and people with chronic illness having very different experiences from other community members.

So we know from the beginning of the pandemic that we were often left out of the responses.  We’ve all had to work incredibly hard to be included.  And that is actually still happening now.  COVID is still in the community, people are still dying, but most of the public health measures that kept us safe for the last few years have been wound back and they’re increasingly being wound back.  At the same time vaccines and the antiviral treatments have been real game changers but there’s real concerns that disabled and sick peel are still not getting access to them at the same levels as everybody else.

The latest figures show that 76% of disabled people who use the NDIS have had three vaccinations or more.  That isn’t good enough.  And there’s no real record of the other 90% of us who don’t use NDIS supports.  Most older people, though, have had at least three vaccinations.

During the federal elections, so only a few months ago, all 8 of the National Disability peak organisations came together to ask the new government to prepare what we called a COVID Recovery Plan.  This was something that would do three things:  it would help us recover from the last two years;  it would provide the ongoing support that we need to stay safe from COVID;  and it would support the new members of our community, people with long COVID.

There’s no sign at all that the new government is even considering this and it’s leaving many of us to try and make decisions about what is safe and what is not by ourselves.  People who are at risk of COVID, people like me, are being asked to encourage to look after ourselves but our safety depends on the actions of the community.  So we’re here to talk about what does all of this mean for disabled and sick people now and as we look sort of six months and a year ahead, what does it actually mean for our community.

So I’m delighted to be joined by some fantastic colleagues.  Tennille Lamb, who is the national policy Director at First Peoples Disability Network;  Dominic Golding who is the policy officer at the National Ethnic Disability Alliance;  Jamie Bannister who is the communications manager at Inclusion Australia;  and William Ward-Boas from VALID and Inclusion Australia.  So I’m very happy to talk with you all and I will ask you all the first question in just a moment.

Just some brief housekeeping, as Damian said, if you have any questions please put them in the Q&A box, not the chat, in Zoom, and then we can talk about those at the end.  All the links and information that we are talking about will be available in the recording of this session and feel free to chase me via email or Twitter if there’s anything that I can help you find.

So the first kind of question that we’re going to talk about is really kind of where are we now?  So what are the top worries, concerns that your community, the people that you represent, are talking about?  I will start with you, Tennille.  What’s number 1 on the agenda?

TENNILLE LAMB:
I think  thanks, El.  Also I would like to acknowledge that I’m on the lands of the Boonwurrung here in Melbourne today where I live, work and play.

So I think the first thing is that as COVID seems to be forgotten about by the rest of the world in indigenous communities it’s still very much front and centre because we’re still very susceptible and vulnerable to it.  The key thing is that we still need measures in place to protect our people and our communities, and we need the government to be really aware of those things.

Not only that, I think as First Nations people with disability ,quite a high percentage of our mob do have a disability of some kind, and chronic health conditions. We need to make sure those measures are really in place, that it’s a very conscious effort by government, federal government and State Governments.

And also we need to make sure that those measures are infiltrating into our prison systems, where we also have a high number of First Nations people with disability in prison as well, and we know those circumstances are quite often over crowded, unhygienic and measures such as isolation are being used to help prevent the spread of COVID in prisons.

EL GIBBS:
Thanks heaps, Tennille.  Dominic?

DOMINIC GOLDING:

Thanks, El.  And thanks DARU.  I would like to speak from Ngunnawal country in Canberra.

Basically for migrants and refugees, the biggest concern is still trying to work our way through the myriad of different changes of information about COVID responses.  It does feel like that it is back to being the individual responsibility to look after yourself.

Unfortunately, as stated earlier, multicultural communities, those from middle eastern backgrounds, it’s been reported  and have experienced the greater level of death relating to COVID.  Still no clarity over the fact that we’re still dealing with a workforce, essential workers, mainly us bearing the brunt of a lot of government and what are public expectations that we should get back to normal, and that means we as a workforce, as well as those who are working in the workforce but also those who are recipients of essential workers are there still seem to be huge gaps when it comes to service support and provision.  Thank you.

EL GIBBS:
Thanks, Dominic.  That’s a really key point around the workforce, that both we are the workforce and that we rely on.  Will, what about for people with intellectual disability?  What are the key worries about COVID right now?

WILLIAM WARD-BOAS:
Thank you, El.  I’m going to give a quick acknowledgement to the, the Wurundjeri people of the Kulin nation from Victoria.

So the biggest concern, I guess, is the general practice of people in the community wear masks and aren’t sanitising their hands, it’s not happening as frequently as it used to.  As all of us are aware, COVID safety practices are slowly being lifted in all of the individual states which is raising more concern on whether people are going to get it or not

And because I’ve had a significant role in sharing information, the most up to date information on COVID to people in day services for the past year and a half, I guess the other thing is that government are not updating their websites on the most up to date information.  Some of the information can be months outdated and it’s quite concerning when people are looking for that information on, you know, reliable websites and sources.  You know, when,, nothing is updated and they don’t get the reliable information they need, so that’s quite a big worry.  And probably the most worrying thing.

EL GIBBS:
Absolutely.  Jamie, is there anything else particularly around information that you think is concerning people at the moment?

JAMIE BANNISTER:

Hi, Jamie here on Boonwurrung land and from Inclusion Australia.

I think Will has very articulately explained the problem with information, and, you know, it’s about accessible information, and also the speed of information, the turnaround of that information from government. We’re seeing a lot of changes each week and I think we need to kind of keep up and make sure that that information is available.

And I think just one broader thing that I would highlight, and I’m sure we’ll pick up on this later, it’s the disproportionate impact of people with disability on COVID in a number of areas.  For example, in the workplace a lot of people with intellectual disability would be particularly affected by the fact that we’ve had this huge transformational shift across society in the way that we work and the switch to moving online.  So that’s really impacted a lot of the job opportunities and opportunities to be part of the community for people with intellectual disability.  So it would be good if we can cover that at some point later on.

EL GIBBS:
Absolutely.  What an enormously wide range of concerns and, yeah.  So now I wanted to kind of think about what could we do about some of these.  What are the key measures that we could think about as a community that could address some of these issues?

One of the things that I worry about a lot is more and more of the prevention or of COVID as people have said is falling on us as individuals.  But what does that actually mean?  Does that mean that we’re expected to stay home or not participate in events?  And what does that mean for people who rely on income support and don’t have the financial capacity to pay the extra expenses around staying at home.

So I’m interested in how we could ask government but also ask the wider community to support us around COVID.  So we will go around in the same kind of order, I think.  Tennille, do you want to have a crack at that?

TENNILLE LAMB:
Yeah, sure, thanks, El.  It’s a big one isn’t it?

I think in the first instance and touching on the information that the other panelists have touched on as well, I think a big one for our more remote communities is having that information translated into the first languages of the people of each community.  But also in other ways that they understand that as well.

And working with each of the medical  I know the medical services are already doing it, but it’s a big deal to have things done in language.  A lot of our remote communities speak up to 10 languages, because of all the surrounding communities.  So it’s really important that that is done properly and that it’s done quite urgently as well.  In terms of the community around us,

I think a big one is maintaining the pressure on governments and health services to keep the messaging up publicly.  There are still very vulnerable people in the community to COVID and that we all still need to be doing our part to make sure that the spread is maintained.

EL GIBBS:
Indeed.  Dominic?

DOMINIC GOLDING:
Thank you.  Following on from Tennille, I just find it a bit interesting that we, for the last two years  in fact, more than that  in pre pandemic, advocacy organisations have been telling government that there are certain processes about information flow and better communication of messages through various different systems.

What is interesting, I think, is that right in the  midway, one and a half years ago, the government were seriously adopting many of these methods.  So they do know that there is a way forward where you can get the message out but it’s still only reactionary political  it’s still a reactionary one.

So a politician will make a statement, but then the departments and everyone else need to follow through on that message.  What should happen is that we’ve already got the systems and methods in place.  It should be a lot easier just to ensure that you consult your parliamentarians, “Okay, what are the things you really want to say?”  Put these things in place and then by the time the politician or, you know, media makes an announcement about changes to COVID rules or regulations, this stuff is already ready to go to be released out into the public, and are readily accessible to the various different networks and systems that are already in place.

One of the other things I think really needs to be acknowledged is that many of us come from both from CALD and migrant backgrounds, come from countries where according to the UN people with disabilities are vastly greatly impacted because of countries are still dealing with catchup with vaccinations, they are still dealing with the fact that many states have collapsed, so there is the added stress on people in Australia who have to consider not only their own health and family but they also have to consider family, friends and situations back in their home country.

EL GIBBS:
100%, Dominic.  And I can hear the frustration in your voice about how many times we have all talked to government about fixing information for disabled people.  And I know I’ve had those conversations and I know all of you have had those conversations, and yet still information is done in a reactionary way, and as Will said, often is months out of date by the time that accessible information comes out.

Will, in terms of what the government and the community could do to support disabled people at the moment with COVID, what are your ideas for that?

WILLIAM WARD-BOAS:
I think sharing your information on vaccinations has been a big priority in the last year with advocacy organisations because the statistics for people with disability getting vaccinations were low, concerningly, so.  We’ve  I’ve partaken in multiple projects on sharing information about what the appointment of the vaccination looks like, who can you bring with you to get support, the types of vaccinations there were.  So that those were the kind of things people were doing in the midst of COVID but now what people need are reassurance that things are going in the right direction but people are still being safe.

Because I think there are a lot of measures being done to remove practices that have been existing for the last one and a half, two years and there’s no reassurance about whether this is making things better or if COVID numbers are still up.  Because, personally, one of the biggest mistakes I think government made was to go by vaccination rates instead of numbers of people in the community.  It’s a lot more confusing from a person with a disability’s point of view.  And if people aren’t getting vaccinations, then people won’t know what’s going on in their community.

So that’s one thing.  And I think the other is, like, I think there should be more support people who do get COVID because we’ve had people come to us that have had COVID and everyone experiences different symptoms, but I don’t think there’s enough of a safety net for people who get COVID in the case of if they are in a disability group home or even living with family.  Like, what do they have to do, where can they find supports, and who is going to be able to help them in their time of need when they are dealing with COVID?

Because I’m speaking from my own experience as well as others that I’ve heard from, the metropolitan network.  When I got COVID, it was very confusing because there was a lot of phone calls that you had to make and it had to be organised for you, and then if your RAT tests weren’t necessarily accurate, you had to get a PCR test.  They don’t explain these things, like, anywhere, especially from government.

So I just think it’s a matter of if you get COVID, what do you do?  Like something as simple as that.  And also reassuring people that you’re listing these things for a reason and not just out of the blue for nothing.  That’s not reassuring in any sense of the imagination.

EL GIBBS:
Yeah, very good points, Will.  I hope that they’re taking some notes.  Jamie, what about you?  Is there any particular measures that you think the community, or government, or both, could put in place now that would support disabled and sick people?

You are on mute.

JAMIE BANNISTER:
There I was in full flow.  Apologies.

Yeah, just picking up on what Will and Dominic said I think it’s about joining the dots.  I think that we need to remember that for people with intellectual disability, in fact for a lot of people who use services, there are a lot of people in their lives and those people play an important part in the support network.  There are families, there are service providers, there are advocacy organisations, there are government.  There is also our statutory bodies and each of them plays a role in that information sharing but everyone needs their own types of information.

So as William said, there is that instance where people themselves need to know what supports are available.  But families need to know how best to support people to get vaccines, to get medication if their family member gets sick.  So I think it’s about understanding the different audiences that need that information and making sure that they’ve got it.  And as Dominic says, you know, have it in advance.  A lot of this stuff is known.

It was not a surprise that people with disability and older people were the most at risk of becoming very sick from COVID.  We knew it right from the start from the evidence around the world.  And we had plenty of head start here in Australia to be able to get this right.  So having it there in advance as much as possible is really needed but I think it is about that information for specific audiences that’s needed.

We tend to kind of throw out a one size fits all message which for people with disabilities is inaccessible and for other organisations it’s not really meaningful.  And services is another thing we probably need to talk about because there were a lot of services that were really trying hard but they just didn’t have the information that they needed, and without that clarity it went off into some difficult practice, I think would be fair to say.

EL GIBBS:
Yes, I think that there were some particular approaches from some services around  and I think, Tennille, you touched on that as well with prisons, other kinds of congregate care when there was isolation, locking down, denying people with disability their rights  to anything, really in particularly the early stages of COVID.  But I do think that that practice has continued in a lot of those congregate care facilities and that hasn’t shifted.  We haven’t had significant work on a different kind of approach.

So we’ve got a good todo list for government.  I think it matches the todo list we got together in April 2020.  I think it matches the todo list we got in August 2020, 2021, 2022.  So I think disabled and sick people have been using their expertise to ask for what is going to keep us safe for a long time now.

One of the things I did want to talk about is the changes that have happened over the last two or three years.  A lot is different now than it was at the end of 2019.  If we think back to then, it was a time of  just pausing  there we go  the Auslan interpreter is back  the time of the bushfires, all of that.  It feels like 10 years ago, not two and a half years ago.  But some of the things that disabled people had been calling for for a long time, like telehealth like events being made more accessible for people who need them online  a lot of things that we had been asking for happened very, very quickly.

So are there things that we have learnt from COVID that we could apply for other emergencies, and is there anything good that has come out of how we’ve responded to COVID that we want to keep?  So Tennille, off to you.

TENNILLE LAMB:
Thanks, El.  I definitely think  I mean, I think the connectedness we have over the internet with telehealth, it has been really great.  Even the ability for us all to access psychological care through psychologists, psychiatrists, via bulk billing and telehealth has been really incredible as well and I think that’s something that needs to continue.  I think  yeah, those are the things we definitely need to keep.

A sense of togetherness as the community but some of the things we’ve learnt but maybe haven’t acted on that we should have is that, you know, if we talk about Maslow’s hierarchy of needs for First Nations people with disability, in communities a lot of people don’t have adequate housing, a lot of people don’t have hardware, they don’t have running water, they don’t have somewhere to isolate if they are sick, they don’t have a medical service in town that they can access if there are infections in the community.

I think  and with the bushfires and the flooding we also saw a lot of communities have no food.  There was no food in Tennant Creek.  Alice Springs had no food for weeks because of the floods, no way to get food in and the Northern Territory government refused to do it so the Federal Government did it.  There are so many things.

As a nation we have so much means, we have so much money and ability to future proof ourselves from these kinds of disasters, and we need to pull together and do it and stop making excuses.  I think it’s high time that we undervalue people because it costs more to service them, and do what needs to be done.

EL GIBBS:
Thanks heaps, Tennille.  I keep thinking about Damian Griffiths, the CEO of First Nations disability network who spent a good amount of time during COVID driving out in a van with supplies, the essentials for First Nations communities, all of the issues were made much, much worse through COVID, and I think it’s important that when we talk about emergencies and disasters that we remember this and we make sure that communities have what they need now as well as into the future.  Dominic.

DOMINIC GOLDING:
Thanks.  I’m going to provide a bit of a complex answer.  One is that, clearly, resources can be made available by government when circumstances demand it.  As an example is the boosting up of welfare allowances and emergency payments for COVID.  Now, before we had a lot of political argybargy over, “No, we should not increase the rate of welfare payments”, keeping people under the poverty line.

Secondly, corporations can do it when asked, and again when circumstances demand it, that they can have workplaces that are adaptable, that are fluid, and that meet the needs of their employees.  But it is interesting that on the flip side from my learning within the community that all these years of technology apps, information pathways, can be a double edged sword.

It can either promote conspiracy theories about COVID, it can promote racism against Asian Australians, it can also exacerbate and confuse where we should get our trust in government and services and establishment.

I would like to also reflect on the fact, you know, and probably bordering on what Tennille was saying, demonstrating the fact that crisis often outweighs the fact that certain communities will be given more of the support than we like to do what they think is necessary.  While poorer and often those of colour are left to either deal with government restrictions that would not otherwise be put on a more wealthier or established communities like Toorak or North Shore Sydney.  But businesses also given a lot of handouts by government as well.

So I think it demonstrates we’re still dealing with a system, a postcolonial, basically a system where race and wealth and class still play a lot into how government respond to you and your circumstances.  I think the idea of Australia being a fair country is nice.

We can see that in different circumstances but  such as flooding, bushfires.  I mean, I grew up in the country so I’m used to  I have a great understanding of what disasters are and their impact but we’re still dealing with a system that still privileges some over others.  And what the pandemic should have done is that viruses and disasters don’t care what background you’re from;  they’re going to make your life difficult and governments have a responsibility and community have a responsibility to provide services equally and justly.

Thanks.

EL GIBBBS:
Thanks, Dominic.  So, Will, are there any  has anything good come out of COVID?  And are there any of these good things that we can use in the future?

WILLIAM WARD-BOAS:
Good things?  I think the fact that people are making an effort to stay connected during the difficult time was probably the biggest highlight.

A good example of that, which I usually refer to when I speak about COVID in a good sense, is in day services.  Staff were booked for online activities for people to partake in when they are, you know, like isolated, and especially the midst of the first year of COVID with the big lockdown, that would have been so helpful to keep people sane.  And people are face timing their family still.  And I think there was a lot of disconnection brought about because of COVID.  So I think the staying connected aspect was the best part.

But also I think one of the other things that was a positive was advocacy organisations were making accessible resources for people with disability to try and understand what COVID is and what’s going on.  And especially from a project worker’s perspective of working with an advocacy organisation, we’ve definitely made a significant effort to make resources for people with disability to try and understand what’s going on when things are happening, especially within day services and group homes.  I think that’s a big positive.

But I did want to highlight, like, the crisis situation there was no support with the fire relief and then transitioning into the COVID situation.  People lost their homes.  People were in dire need of support and relief after such a traumatic summer, and then to come into a full year of lockdown, and I failed to see any transition support nor support from either situation of the pandemic or, you know, losing their homes.

And I think there were also situations with the fire relief where people with disability had to be transferred and people are so disorientated, and so not supported in that situation.  So I guess, yeah, on the crisis side of things, that’s my two cents’ worth.

EL GIBBS:
Thanks heaps, Will.  That was a good couple of dollars’ worth, I reckon.  Thank you.

Okay, we’ve got some excellent questions coming in from the folks who are watching along.  So what I thought I would do is I will ask the question, and then whoever feels like they want to answer can just jump in and have a go at answering rather than going around again.  I think that’s probably the easiest way to do it.

So the first question we’ve got:

QUESTION:
COVID really highlighted how health services and workers aren’t great at understanding disability.  What ideas might the panel have to improve how people with disability are cared for in health services generally?

EL GIBBS:
So who wants to have a crack at that one?  Come on.  Will?

WILLIAM WARD-BOAS:
Yeah.  Goodness, in general, the health services  well, I guess I should say the medical side of community access is a bit of a hit or miss because there are lots of instances where people are discriminated a lot in receiving medical services.

But what would I recommend?  I would say, firstly  and this is from my experience with being involved in a medical project recently,  is that leave all your previous aspirations behind on disability and your own perspectives on it is.  I would much more prefer for people to have disability training and disability advocacy awareness as well in medical sectors so that all the bias and prejudice on people’s disability and labels are left behind.  So that’s first recommendation.

Secondly is always communicate with the person with the disability and always second the support or the people there to be there to comfort them during the appointment.  That’s the second thing.  Unless the person with disability tells you that, you know, they prefer their support to speak on their behalf, you shouldn’t assume that they can’t speak for themselves.

And I think, yeah, those are the two most important things when going into medical situations.

EL GIBBS:
Thanks heaps, Will.  Tennille, is there anything from the Aboriginal medical services or the Aboriginal community controlled health organisations, ACCHOs that we can learn that the rest of the Australian community can learn about medical services and inclusion?

TENNILLE LAMB:
Yeah, look, I mean there is.  The Aboriginal medical services around Australia have always been really good providing holistic services to our mob.  And kind of a one stop shop really, where people can access everything they need in the one place.

They’re also really good at reaching out and supporting each other in other ways to making sure that services are delivered in people’s homes if they need to be, that, you know, medicines are delivered and all of that kind of thing.  And I think from that perspective, definitely.

Also the other key thing that, three years in the Aboriginal and Torres Strait Islander leadership of this country and the health services got together when the pandemic first started to hit overseas and really ran a really strong campaign with the Australian and States and Territories governments, and also communities to protect them from COVID.  So within the first couple of years there was very few First Nations people who had contracted COVID, and our communities who were very highly vulnerable, particularly to the first wave, were mostly protected.

And I think the rest of the country could probably learn a lot from that, in how quickly everyone acted and pulled together to make sure our mob was safe.  I think that’s probably the biggest learning from my perspective.

EL GIBBS:
Yeah, totally agree.  That was an extraordinary effort, particularly in 2000.  Apologies, the questions have dived off.  Anyone want to dive in on health services before we get to the next question?  Jamie.

JAMIE BANNISTER:
Just a very quick comment about support for language and, in particular  well, community language which Dom could definitely speak to, but also for people who use different forms of communication, and just making sure that our health services have access to translators and other people who can help in that space.

I know for the deaf community this has been a huge issue just getting access to people who can interpret and support people to have safe health services.

EL GIBBS:
Great.  Look, we’ve got a sort of health related question coming next.

QUESTION:
What are the impacts of long COVID and repeated COVID infections on people with disabilities?

EL GIBBS:
Just a note of caution, none of us are medical people, so I think in terms of one of the things I’ve been thinking a lot about with long COVID has been how we can listen to communities who have experienced these kinds of postviral illnesses before.

So our community is full of people who have survived illnesses like polio, and people who have MECFS who are particular survivors of postviral illness and have experienced great deal of disability from that.  So I think there is a lot we can learn from within our community about supporting people who are coming in with long COVID and starting to live their lives as disabled people for the first time, which I think can be a bit confronting, and finding out how Fred Bear our safety net can be for people particularly with severe chronic illness.

Does anyone want to chime in particularly around long COVID and what we can do as a community to support people who are coming into our community?  Dom, do you want to have a go at that one?

DOMINIC GOLDING:
Thank you.  Dominic here from NEDA.  I would like to basically state that those from refugee backgrounds have lived experience in refugee camps fleeing conflict where health systems have absolutely collapsed.  I think we forget that many of us in the community have an inbuilt understanding of how to deal with systems which don’t work or fail to live up to their ability because of certain structural disasters, essentially.  They have also learnt how to deal with emergency situations, and I think a lot of us have  can bring a lot to the table.

But I also want to state that with long COVID, a number of people in our community have had repeated COVID infection.  It’s impacted on the way we perceive how governments give us our supports that we need but it also made us more aware and understanding that the viruses play a significant role in how we perceive where we are in today’s world.

It’s no longer just a third world problem.  It’s no longer just a problem over there, which was  I need to highlight which was the response from the former government that it was an Asian problem.  In fact, the Abbott government had also ripped up the COVID  no, sorry, the Abbott government actually ripped up the national government’s pandemic response that the Australian health system had developed in  hopefully they didn’t need it but unfortunately by the time COVID hit our shores, governments had basically shelved the national response.

In terms of that there, there’s a lot of people in the community where disability and viruses and diseases is something that we’ve learnt to live with, and is something that you can push through.  And on a positive note it is something where there are multiple ways of dealing with caring for yourself, your wellness and your health that just doesn’t have to rely on western approaches so the vaccines have been very helpful but we’ve seen that has also been a very unequal in its distribution.  Thanks.

EL GIBBS:
Thanks, Dominic.  We’ve got a couple more questions to go.  So I will just move along with that one so we can answer the other ones.  The next question is:

QUESTION:
could the panel elaborate about the unique impact of isolation on people with disability?

EL GIBBS:
This is one close to my heart.  I know, like many other people with severe  who are severely immunocompromised as the language goes, we have spent a great deal of time in isolation over the last couple of years.  And as Tennille said earlier, people who are in prison have spent a great deal of time in complete isolation, as have people in group homes and people who live in boarding houses and other kinds of congregate care.

So who would like to have a talk about what kind of unique impacts have there been for our different communities about our isolation.  Tennille, do you want to elaborate a bit more on what you were talking about earlier?

TENNILLE LAMB:
Sure.  Are you talking about the isolation in prisons and whatnot?  Yeah, sure.

So I think what happened  and we know that isolation is often used in prisons for a variety of reasons and misused also when that does happen.  What we were seeing in prisons was that because COVID was such  it was such a risk for the prison population, so that meant that there were no visitors coming in and people who were incarcerated weren’t able to see family and friends and have their regular visits so they were negatively impacted by that.

It also meant that sometimes people were isolated in isolation cells.  And there was an additional negative impact, and we know that has really long lasting impacts on people’s mental health as well in terms of PTSD, and complex PTSD, and aggravating or worsening any kind of mental health issue that might already be present.

The other thing is is that people with intellectual disability  and we know that there are quite a lot of First Nations people in incarceration and in prisons that have an intellectual impairment, and also psychosocial disability, that it’s just really hard to comprehend exactly how that would have affected individuals who were subjected to that kind of treatment.

The other thing about mob with disability who are incarcerated, is quite often there’s not an acknowledgement or there isn’t an understanding that some people even have that kind of a disability, and so they’re not  already not receiving the care and treatment and support that they might need in that environment.  And so things were exacerbated a lot during the COVID time.

And it’s certainly not something I’m an expert about so I can’t talk much about it but I know the impacts have been huge.  And I really don’t,  I don’t want to predict but I think the future outcomes of that we’re going to see in the next few years is going to be pretty devastating.

EL GIBBS:
Thanks heaps, Tennille.  Will, what kind of  what have you been hearing from people and day programs and group homes when you’ve been visiting about the effect of isolation?  What’s it been like for people with intellectual disability?

WILLIAM WARD-BOAS:
Well, we’re still hearing about people coming out of COVID.  And it’s really  I think it’s actually traumatised a lot of people, the fact that they weren’t able to do, like, simple things like going to the grocery store or seeing their families or get the family regular visits.  That’s really been impactful.

But also it’s been  we got the updates as the lockdowns were happening.  So we had regular contact with people with disability and it was awful.  Just like people not being able to see their families and do the usual things that they do on their routines, and going to day programs and doing their usual community, I guess, participation they usually do, like bowling as an example, going to the library.  People missed out on a lot.  And one of the things that was very recurrent at disability group home services was the visiting restrictions were carried for a solid two years, possibly two years and a quarter and practices were still happening, even when COVID was calming down, I should say with quotation marks,  and people were still struggling to get to see family.  Even after, like, the  like the gap between the two big lockdowns, the visiting restrictions were still in place.

Also getting advocacy organisations out into group homes as well was quite interesting and quite a lengthy process as well.  Because for a while services were very strict about people coming into homes because of the risk involved.  So there wasn’t just  you know, like the residents were getting absolutely traumatised by not getting what they usually get and also family interaction but it was also people from outside point of view coming in to make sure people are still getting what they need in terms of support, it was amazing not being able to do that in person.  So, yeah, I think that’s been my reoccurring experience.

EL GIBBS:
Thanks, Will.  We’ve got about two minutes to go and there is one final question.  We will do a quick lightning round of the last question if that’s okay.  The last question:

QUESTION:
Why do governments seem so surprised that people with disability need support in good and bad times.  Why aren’t they asking people with disability for ideas about what we might need?  How can people with disability get our voices heard in the right places to make sure our needs get met.

EL GIBBS:
Just a tiny question.  You’ve got about 30 seconds.  Dominic.

DOMINIC GOLDING:
Well, essentially the government is about the majority, the ableist, able-bodied majority.  And, essentially, what I found is that isolation and social distancing was  showed that it was able-bodied people did not like it.

so now that the COVID restrictions are coming off, it’s basically everyone feeling like it never happened.  But people with disabilities, there has been  we still need to press the fact to the government, and to community and our families and our friends that health matters as much as one does in terms of social interaction.  So what’s more important, having footy with a couple of beers with your mates or is it more important that those who are more at risk are kept safe and  yeah.  Thank you.

EL GIBBS:
Awesome.  Thanks.  Tennille, do you have 10second response?  How do we get our ideas to government across?

TENNILLE LAMB:
I think we need to group together.  So work with your local peak organisations,  your local peak organisations,  your peak organisations or local orgs.  Come together as community, organise as a unified voice and make a big noise.  Civil disobedience if you have to, honestly this is what we need to do, I think.

EL GIBBS:
Excellent.  Jamie and Will?

WILLIAM WARD-BOAS:
Just as simple as connecting with advocacy organisations, seeing what information we’ve got from people experiencing COVID.

JAMIE BANNISTER:
As the non-disabled person on the group I would say listen to disabled people.

EL GIBBS:
Awesome.  Thank you all so much.  I really appreciate your expertise, your wisdom and the two and a half years of longstanding advocacy for our community.  We would not be where we are now without all of your hard work and I’m incredibly grateful.

So I’m really confident that disabled people are some of the smartest and best campaigners and we can come together to get the changes that we need to stay safe and for the rest of the community to remember that we’re still here even if we don’t go out quite as much as everybody else.

Thank you so much to DARU for hosting this conversation today and to our wonderful panel, to Tennille, to Dominic, to Jamie and to Will.  Thank you so much for joining us.

Big thanks to our Auslan interpreters and to our captioner today, and, yes, thank you for having us.

DAMIAN CVENAGH:
Hi everybody.  Well, thank you, yes.  Thank you, El.  And we’ve come to the close of our first session today so a huge thank you to El, Dominic, Jamie, William and Tennille for your excellent contributions today.

I would just like to highlight again that the slides and recording of the session will be available on the DARU website in a few days, as per usual.

Thank you to the Auslan interpreters and captioner for your hard work today.  Thank you to SHOW DIVISION for bringing the production today, and have a wonderful rest of the day everyone and see you next time.

Bye for now.

 

Open Letter To National Cabinet: Immediate Actions Required for Australians with Disability in Response to Coronavirus (COVID19) (off-site)
Topics:
Emergency management