Supported Decision Making Podcast

More than Isolated - Interview with Mary Sayers, CEO of CYDA

June 24, 2020 Advocacy for Inclusion Season 2 Episode 12
Supported Decision Making Podcast
More than Isolated - Interview with Mary Sayers, CEO of CYDA
Chapters
Supported Decision Making Podcast
More than Isolated - Interview with Mary Sayers, CEO of CYDA
Jun 24, 2020 Season 2 Episode 12
Advocacy for Inclusion

Today we speak with Mary Sayers, CEO of Children and Young People with Disability Australia (CYDA) about their 'more than isolated report'.
Children and Young People with Disability Australia launched a survey in the early days of COVID-19 in Australia. It was a survey focused on finding out how children and young people with disability were experiencing the world of COVID-19 and the challenges, changes and disruptions that we've been through and are still going through.  The survey results became the basis of CYDA's report, "More than Isolated: the experience of children and young people with disability and their families during the COVID-19 pandemic." It was a report developed in collaboration with UNSW. 

You can read the report here: https://www.cyda.org.au/resources/details/161/more-than-isolated-the-experience-of-children-and-young-people-with-disability-and-their-families-during-the-covid-19-pandemic

email us podcast@advocacyforinclusion.org 

Show Notes Transcript

Today we speak with Mary Sayers, CEO of Children and Young People with Disability Australia (CYDA) about their 'more than isolated report'.
Children and Young People with Disability Australia launched a survey in the early days of COVID-19 in Australia. It was a survey focused on finding out how children and young people with disability were experiencing the world of COVID-19 and the challenges, changes and disruptions that we've been through and are still going through.  The survey results became the basis of CYDA's report, "More than Isolated: the experience of children and young people with disability and their families during the COVID-19 pandemic." It was a report developed in collaboration with UNSW. 

You can read the report here: https://www.cyda.org.au/resources/details/161/more-than-isolated-the-experience-of-children-and-young-people-with-disability-and-their-families-during-the-covid-19-pandemic

email us podcast@advocacyforinclusion.org 

Support the show (https://buff.ly/3dGs2dG)

 

Staying Connected Ep 12 More than Isolated Interview with Mary Sayers 

SUMMARY KEYWORDS 

disability, people, pandemic, survey, information, support, children, families, report, impact, situation, services, community, response, lessons, absolutely, emergency, mary, planning, challenges 

SPEAKERS 

Rob Donnelly, Mary Sayers 

 Rob   

Welcome to Advocacy for Inclusion’s Staying Connected podcast series. Last year, we presented a podcast series on supported decision making. That was about building the important skills we need to support other people when they're making decisions. 2019 feels like a million years ago now. Since then, we've had bushfires everywhere and then the relief of rain. Now, we together face the challenge of COVID-19 or the Coronavirus. In our staying connected podcast, we will find our way through these challenging times, together. 

 

One of the challenges of the 24 / 7 news cycle is that vital information no sooner appears on the public radar than it's replaced by the next thing. One report follows another. One story is left in the shadows of whatever comes next. The challenge, in this never-ending avalanche of information, is to give due attention and consideration to those stories and experiences that we need to take to heart in our communities, in the offices of our government ministers, and on the floor of our Parliaments. 

 

CYDA - Children and Young People with Disability Australia - launched a survey in the early days when we were grappling with COVID-19 in Australia. It was a survey focused on finding out how children and young people with disability were experiencing the world of COVID-19 and the challenges that were coming through all the change and disruption that we've been through and are still going through.  

 

The survey results were the basis of CYDA's report, "More than Isolated: the experience of children and young people with disability and their families during the COVID-19 pandemic.” It was a report developed in collaboration with UNSW. Mary Sayers, CEO of CYDA, joins us today to talk about the more than isolated report. Mary, welcome to the podcast. 

 

Mary Sayers   

Thank you very much, Rob. 

 

Rob   

So, I have to say I'm really impressed with your organisation in terms of you really did hit the ground running. The World Health Organization declared a pandemic on the 11th of March. And then you guys within five days you had the survey up and ready and sent out into the community. Mary, can you talk us through the reasons for getting that survey out to people at that early stage of the pandemic in Australia? 

 

Mary Sayers   

Look, one of the reasons we got out so quickly is because we were hearing so many concerns and so much fear about what information was coming out. But also, the fact that so many children and young people with disability are immuno-compromised and may have been at greater risk from the Coronavirus or COVID as we've commonly come to know it. And so, we thought, look, let's get on the front foot and find out what's happening. And what sort of information are people getting? And we're pretty much overwhelmed within the first three days we had 400 responses, which really showed us how worried people were and one of the reasons we knew that we needed to get out there was because the information we were hearing wasn't targeted to the people with disability generally, but was not even particularly targeted for children and young people with disability. So, we really want to understand what were people's information needs so that we could really inform government and inform our stakeholders what was really needed during this situation. 

 

Rob   

You certainly did a very effective job. I think the language in the report is that it provides a really comprehensive snapshot of a moment, which it certainly does. I think 64% of the responses came in that first week - I think 16th to 22nd of March. And for people who might have a short memory, this is, of course, the time of the great toilet paper crisis. So, we had our supermarkets being emptied out; people were panic-buying; it really was a very chaotic time. And we have this survey. So based on the survey, what was that particular time,those early days of the pandemic, what was that like for young people with disability in their families. 

Mary Sayers   

In the early days, there was much fear. Families were really struggling to buy essential equipment and resources for their children. So for some of us, toilet paper might be a big deal, because we are not getting it. But if you've got immuno-compromised children, you need hand sanitizers or continence pads or a whole range of different nutritional supplies that all of a sudden you can't get. Then, of course, the inconvenience for most people, but for children and young people with disability and their health and wellbeing this can be really critical.  

The other snapshot is happening at the same time was that services and supports quickly withdrew. So, families reported that they were having cancellation of their NDIS supports for their children. As well as the whole confusion about moving to remote learning and schools shutting. So, in those first weeks, it was complete confusion. And, you know, this is not to blame anyone, because the whole of the country was in a bit of turmoil. But what did show is that children and young people with disability face challenges in their everyday life in gaining equal access to services supports, but what the COVID situation did was exacerbate that inequality that I already face. So, you know, there were many families who were really left without essential services that the children need for their development and for their wellbeing.  

So, it showed us that there was a lack of proper pandemic or emergency planning. We know that in emergencies, people with disability generally are impacted harder and impacted the longer, so given what we've known about, you know, we are a country that has a lot of emergencies, let's not shy away from that. So, we should have expected that children young people with disability would be disproportionately impacted but we couldn't say that there was that planning in place. So, it was really critical that we got this data out to our stakeholders. So when we were collecting this data, we were analysing it as we went, so weekly, we were providing the information back to the NDIA so that they could refine the FAQs, frequently asked questions, that they were providing to NDIS participants. So it was really data we were collecting, to inform a policy response. And then at the end, obviously, we've been able to write it up as a report. But the most important thing is that we can provide that information back to our funders and stakeholders so that they knew what to do and how to respond. 

 Rob   

One of the focuses with the report seems to be around information - this fairly critical question of people getting information and being informed properly. And the report said that 82% of people felt there was a general lack of information about the coronavirus, particularly targeted to children and young people with disabilities and families. The survey was open for five and a half weeks, so it was open for an extended period of time. Were you able to pick up from the responses as that time went on, were things improving, was the information getting out more effectively as we gained experience of negotiating the virus or was it problematic from beginning through to the present time? 

 Mary Sayers   

Look, sadly, that stat just didn't change. It was really consistent throughout. One of the challenges was, you know, these constant, very scary press conferences that were being held by, you know, health authorities. And so, the information was really targeted everyone, and it wasn't really more the particular groups that might be more impacted. So, whilst there were some groups like those in aged care, that got priority information, for people with disability generally, and children, there was just no information. There was a complete vacuum of information. And so, we didn't see that that improved over the period of time. And I have to say, it’s taken a long time, even post-survey for information to get out.  

The whole impact of remote learning on children and young people with disability we are really worried about, and we did do a follow-up survey which we have over 700 responses to that survey. We shut off our COVID particular survey and then we moved on to the remote learning. And so The University of New South Wales was analysing that data for us, but things we heard is reasonable adjustments were not being provided. People were without information about how to support learning at home. And then for children and young people with disability, who have particular access needs, there wasn't that pre-planning that was needed.  

So that lack of information continued, and for me, that's a real lesson from this pandemic. There's things that the whole community needs. And then there are things that some portions of the community needs and certainly for children and young people with disability and their families, they are a particular cohort that have really specialised information needs, that needs to be prioritised. Yet they're still no messages targeted to children, young people with disability and what does that mean when we're getting this second wave? 

 Rob   

So, you've been able to feed data back to the NDIA, which is absolutely critical and important. Who else have you been able to feed that data back to? Who else have you been able to inform about what you've come to understand? 

Mary Sayers   

Yeah, look, we've certainly provided the data far and wide we've written to every state and territory premier to let them know about the report. Obviously, we want to help them in planning their response. But we also provide the data to the Disability Royal Commission in terms of the Disability Royal Commission completed an issues paper which they released around emergency planning and response. And given that this was such a situation where you may say that there was some systemic neglect of the needs of children and young people with disability, we thought it was important to let the Disability Royal Commission know what had happened. But we also provided a submission into the senate inquiry into COVID 19 because we have to learn the lesson from this situation. It really has exacerbated the disadvantage that children and young people with disability face, and that disadvantage is not because of their disability. It's because of the systems and community and environments that are disabling as opposed to the inherent vulnerability of the children. We don't have a community that is fully inclusive already yet, in a pandemic time, this really exacerbated things. 

 Rob   

It's getting that message out. I know, in the community sector, we were always talking about the social model of disability - the fact that there are structures and processes are disabling. 

 Mary Sayers   

Absolutely and when we think about education and some of the neglect of students with disability that happened during COVID-19. You know, we've heard many stories where there was insufficient or no information provided about how students could actually access the curriculum. There was really terrible information given to school, given to parents. You know we've heard of special schools that are provided the same curriculum from preps through to year 12. Now you can't tell me that is a situation with students with disability have high expectations so and where some of those systemic barriers and discrimination in a time like this can get exacerbated. So that was one incident. I'm sure it's not across the board. But our education survey which will be released in July will tell us how widespread some of these systemic and, dare I call ableism, happened during the Covid-19 situation. 

 Rob   

With the Surveys, you are a Victorian based organisation, with the surveys where you capturing information particularly from Victoria or was it a nationwide? 

 Mary Sayers   

Absolutely, even though we are based in Victoria we are the national representative organisation for children and young people with disability. So, all our work we do nationally. We had data from every state and territory. And we had data from rural and remote areas as well. And so, we can be very confident in the data that we collected was really a representative group of families and children and young people with disability because we got so many responses from different communities. 

 Rob   

It's quite extraordinary with this survey and also the one that you're still working on that there was such a response. Obviously, people, they're experiencing a lot, and they are wanting to be heard. So it's wonderful that they've been provided with an avenue for actually getting their experience out there and, and then on to government, who hopefully will process, you know, the information we've heard and actually see changes in policy, especially emergency preparation management. 

 Mary Sayers   

Absolutely, and how we can use this, the lessons from this situation, to say - Okay, well, if we had more equality in our society, the impacts wouldn't have been as great because we already would have been thinking inclusively, we would have already been targeting, and children and young people with disability were not the only group left behind in the COVID- 19 planning. There are other communities who struggle to receive information at this time as well. 

 Rob   

So, the majority of people who responded to the survey were families of children and young people with disability. So, family members and people providing support. What did you hear directly from young people themselves about their experience? Were you able to capture much information directly from them? 

 Mary Sayers   

Yeah, we captured some, whilst the majority of survey respondents were families, we did hear from young people with disability as well. And we heard from one disabled young person who had no family support. They work as a freelancer because traditional employment had been inaccessible, but their work had been cancelled. And they felt that there was no support for dealing with this lost income. Because you know, freelancers don't get sick pay and they felt they were falling through the cracks. You know, we had others who had more secure work but not being able to attend because they've got preexisting health conditions, who've worked in retail and have had the shifts cancelled. So, the impacts were just as great for young people with disability. And that falling through the cracks - it was a bit that we heard quite a bit in terms of particularly those who are on the Disability Support Pension, who weren't eligible for the COVID supplements, whereas we know that for young people with disability who are on jobseeker or on the DSP. You know, they're pretty much living in poverty as well. So how do we support you know, young people with disability holistically, particularly given the impacts of this jobs crisis that's come out of the COVID situation is going to hit young people longer and harder than other segments of the population. 

 Rob   

Absolutely, I saw that in the breakdown of data, 32% of people indicated that the cancellation of support workers and NDIS funded services was having an impact. So quite a high proportion about a third of the respondents. Can you unpack a little bit? What does it mean? What's the impact on an individual and on a family when a service is cancelled? What does it mean, within a house? 

Mary Sayers   

Yeah, look what it means, particularly if there is in-home support that's provided for the disability, that a lot of that pressure falls back on families to actually you know, try and juggle work, if they can, or that there has not been support or their child is not supported adequately. So we had a reduction in the wellbeing for children and young people, as they routines were dismantled, if you like, and for many children that actually caused a high level of distress. And that lack of communication about cancellations happened, you know, so there was just services cut at very short notice, which threw the routines of families into quite a chaotic scenes. And I guess the way that came out is that many families told us that they've lost income or were unable to work in usual employment because of those loss of supports for their children and young people. The move to telehealth, you know, works for some people, but not for everyone. So, there was adjustments as a service system was trying to catch up with what does the service system look like. And then the other major concern that came up was around personal protective equipment. And it was very unclear for a long period of time whether disability services were considered as an essential service and whether they could access PPE. Now, that did get worked out. You know, but in the five weeks that we were doing the survey that was completely unclear, so families were concerned about workers coming into their house without the adequate PPE. So it was kind of both ways that families will cancel other services because of fear Coronavirus but then services were not engaging either. 

 Rob   

And were those issues, mostly concentrated in the early period of the pandemic and were they resolved as time went on, generally, or are they issues still ongoing? 

Mary Sayers   

Look, I think in the five-week period, bearing in mind that we started in March to sort of end of April, that period was a really long period of uncertainty. And it took quite a while before things got out, things like PPE, hand sanitizers, those types of things that are really essential for some children, young people to have their support workers and carers using. In the survey period, still a lot of those things just didn't get resolved. Whereas now when we're talking three months down the track, many more things have been resolved about that lack of access to equipment, how to get it, where to source it, you know, do they pay for it or does the NDIS pay for it? There was a whole lot of blurriness and lack of clarity, which again comes back to emergency planning and preparation; no one could have planned a pandemic of this scale. But emergency planning should go regardless of the type of emergency that happens; we should be prepared for these sorts of pandemics. 

 Rob   

Absolutely, and as you saw the Royal Commission in the issues paper really kind of highlights that as well. And one of the things that I picked up there is they draw attention to UN frameworks about preparing for emergencies and that people with disabilities should be in the room. Part of that process of working out, you know, how we respond to emergencies. So, hopefully, we'll see a little more of that in Australia coming out of this experience 

 Mary Sayers   

Look, I'm sure we will. We now have a special disability working group as part of the pandemic planning. You know, things have happened. It just took a while to get going. And so, in the period of our survey, was before all of that work really commenced. But really what we needed is a much quicker response. And obviously, one of the things that we're concerned about is some of the long term impacts, particularly around mental health and wellbeing, which was quite high and grew higher over the period of the survey, those mental health concerns. So that long term impact needs to be tracked as well. 

 Rob   

Now, you've already mentioned issues around unemployment, that individuals are losing work. And it's certainly an issue for many people. What does the report tell us about the impact of unemployment on people with disability? Are we seeing a disproportionate number of people with disability who had work and are now out of work? 

 Mary Sayers   

Look, I think it's fair to say we didn't pick up on that in our survey. We picked up on where the COVID situation had meant that people were unable to work in their usual employment, which was about one in five people. But we haven't in this survey actually picked up the long-term trends. And I think that's now where the opportunity is, to actually get on the front foot and say, young people with disability, because the jobs market has shrunk so much. And we know that they already face barriers in their employment. How can we plan for this now, rather than waiting six months down the track when we say we told you so? Yes, so we'd be really keen for the Australian government to form a task force around youth employment that has a specific focus on young people with disability but also on other groups like Aboriginal and Torres Strait Islander young people. We really need a whole of government approach thinking about this impact for young people is going to be huge as the job market. And then for young people with disability because they already face barriers, I'm really worried that it's going to be a long-term problem that's going to get more deeply entrenched. So, I think it would be really great for the Australian state and territory governments to be really on the front foot about youth employment. 

 Rob   

We've got a long journey of recovery ahead with those two major issues of employment and but also the mental health repercussions. So, all the information we can capture, I think that will help hopefully formulate the way we can find our way head. One good thing that hopefully might come out at this time experiencing the pandemic and the lockdown is that we've gained a lot of experience. We've gained experience of strengths and weaknesses related to disaster preparation and management. Overall, Mary, what are the lessons that COVID-19 have taught us in relation to children and young people with disability? And how can we be better prepared for the next disaster or emergency that comes along? What are the key lessons that we need to really take to heart and get into policy and get right? 

Mary Sayers   

Yeah, look, I think one of the really good lessons is, you know, there were over 70 organisations who very early on wrote to the national cabinet with our concerns about the responses for people with disability. And there was a really swift response from the government. And that included setting up a disability-specific pandemic committee which is fantastic to look at all the issues. You know, there was a whole lot more work that done in terms of forming a disability hotline that's now up and running so people can ask questions. But I think what's taught us in relation to children and young people with disabilities is that we can be better prepared, particularly when schools shut, and schools go to remote learning. And I think there are some real lessons to explore around how that went, in what circumstances did it go well, and in what circumstances could we have gone better. So we did hear for some children it really worked for them, and particularly for children who with disability who are experiencing pretty tough time at school. But then for many other children, it wasn't working, they didn't have the accessible curriculum, they didn't have the right supports in place. So I think unpacking some of those lessons now, because we're going to have you know, may not be a national pandemic, but they'll be bushfires, there'll be floods, there'll be a whole lot of other disasters that happen as climate change continues to roll along, that we actually really need to and we can learn from this time so that that richness of human diversity is planned for and we don't forget the whole richness and the whole of people in our community. So, I think there are some really important lessons that we need to make sure that every community member is an equally valued member and we pay attention to the existing inequality that happens. 

 Rob   

Mary, thank you, thanks to you and but also to your team at CYDA for the work that you've done here you've captured that shot of people's experience, you've been able to put it together in this report. I'm really looking forward to the next report that you're working on at the moment around the educational experience. I think that's going to be really vital for us all to take note of. Mary, thank you so much for joining us in our podcast today. 

 Mary Sayers   

Thank you very much for having me.  

Rob   

No worries at all. Bye