Information accessibility for people with disability during the Covid-19 crisis

DIIU Online Event 26May

UNSW Disability Innovation Institute Research Seminar Series Information accessibility for people with disability during the Covid-19 crisis Transcript – Webinar, Tuesday 26 May 12.30pm

Information accessibility for people with disability during the Covid-19 crisis

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UNSW Disability Innovation Institute Research Seminar Series

Information accessibility for people with disability during the Covid-19 crisis

Transcript – Webinar, Tuesday 26 May 12.30pm

 

Professor Iva Strnadová

Welcome everybody to the webinar Information accessibility for people with disability during the COVID-19 crisis. This event is part of our UNSW Disability Innovation Institute Research Seminar Series, but this time we are presenting to you online whilst we are all in the comfort of our homes.

I would like to acknowledge the traditional custodians of the land that the UNSW Kensington campus sits on, the Gadigal and Bedgegal of the Eora nation. I would also like to acknowledge the traditional custodians of the land that I currently reside on, the Cammerraygal. I pay my respects to the Elders past, present and future, for they hold the memories, traditions, culture and hopes of Indigenous Australia. I would also like to extend that acknowledgement to all Indigenous people that are present today. As we share our own knowledge, teaching, learning, and research practices across our Universities may we also pay respect to the knowledge embedded forever within the Aboriginal Custodianship of Country.

If audience members have any questions during the event, please click on the chat function in the top right corner with a question mark.  If anyone is having any difficulty and cannot use the chat function, please email us or if necessary, please use the number below. Please only use this number if absolutely required so it is available for those that require it. The number is 029585 9114.

Please see the closed captions button at the far-right bottom. You will be able to turn this on and off. The webinar will be recorded and will be available following the livestream in these formats: A recording with captions, Auslan and a transcript. The audience questions and answers will be conducted by the side panel within Teams. Please click on this button. It is in the top right corner. On the slide there are some visual images to show exactly where the button is.

In regard to social media, please feel free to join the conversation online using #UNSW. And you will see the Twitter handles here. For those listening, it is

@DisabilityUNSW

@ariella_meltzer

@CSIsocialimpact

#UNSW

I would also like to say a few words about the Disability Innovation Institute, which I am very proud to be a part of.  It is a world-first initiative that connects UNSW Scholars, community, industry services, government, and practitioners both nationally and internationally. Our aim is to create and share knowledge, which is interdisciplinary, innovative, and most importantly inclusive. At the core of all we do is co-designing and co-producing knowledge together with people with disability and their organisations.

Now it is my great pleasure to introduce to you, Dr Ariella Meltzer. Ariella is a Research Fellow at the Centre for Social Impact, UNSW, Sydney. She is focused on research with people with disability, young people, families, and sometimes other groups, such as social housing tenants and people who are homeless. Her key interest across these groups are the role of relationships in social policy and social purpose programs and accessibility of information for life, research, and advocacy, including writing Easy Read documents for UNSW Research. And now, without further ado, Ariella over to you.  

 

Dr Ariella Meltzer

Thanks Iva, and lovely to be here talking with you all today. I am giving this webinar from Cammeraygal country, and I would like to pay my respects to the Elders past and present of this country that I live and am currently working on, and I would also extend that respect to other Aboriginal and Torres Strait Islanders who are here today.

Today I am going to be talking about information accessibility for people with disability during the COVID-19 crisis. I will be talking about my insights about what accessible information has been available online during this time, and what questions the crisis raises about what good provision of accessible information means in general.

I want to start by saying upfront that my talk is not aimed at detailing what accessible information should look like in a technical sense and it is also not aimed at assessing the quality of any individual resources out there right now. Instead, it is about looking critically at what it means to provide accessible information in a fast-moving crisis.

I also acknowledge that providing accessible information is a contested activity, where there are sometimes different opinions and no easy answers to complex questions about how to do it. I am not intending for my insights to be a critique of any single provider of accessible information – and I am not going to name any specific examples of good or bad practice. Rather, I will be asking questions that I hope can help the whole area move forward.

Over the past few months, I’ve discussed some of the ideas I cover in this talk today with others, who have informed my thoughts – and I would particularly like to acknowledge Yona Lunksy, Diana Palmer, Cathy Basterfield and Leanne Dowse, whose insights have helped shape my talk today; thank you. 

Next slide, please.

For me, the starting point for any consideration of information accessibility is that it is a human right. Article 21 of the United Nations Convention of the Rights of Persons with Disabilities says that people with disability need to be able to access “information and communications… on an equal basis with others”. This is also a right protected by the Australian Disability Discrimination Act, which says it is “unlawful” to refuse to provide “goods and services” on the basis of disability.

So, this means that access to information is a human right – and this is at the best of times, not even in a pandemic. Given that there’s a wealth of evidence that many people with disability are at particular risk of severe health effects from COVID-19, this right takes on even more importance right now – getting the right information is actually a matter of a life and death. This is the very serious background to everything I am going to be talking about today.

Next slide, please.

I want to clarify at the start what I mean by “information accessibility”. There are a whole host of formats that are included under this umbrella.

  • It includes information that is accessible to people with low vision – that uses large text, good spacing and sans serif fonts.
  • It includes information that is accessible on the internet – for example, having alternate text behind images for screen readers to read.
  • It includes information that uses easy language, so it is easier to understand. Common formats include Easy Read and Easy English, where pictures are also present to support people’s understanding of the written information.
  • It also includes information that is translated into Auslan and information made in formats that allow communication, for example, resources for users of alternative and augmentative communication systems.

So, there are lots of formats included, and no one easy answer to accessibility for everybody. This is also part of the background to what I have to say today.

Next slide, please.

As someone who has been interested in accessible information for a long time, in the early days of the COVID-19 crisis, I became interested in what accessible resources were out there about it. Not thinking that it would lead to anything like a webinar, I put up a tweet on the 17th March. It said:

“I’ve been keeping a list of resources about COVID-19 I’ve seen that are accessible to people with disability. Info access is so important at the moment. Although most are online through various orgs already, I will post them in the thread below. Please add any I have missed”.

Not really thinking about it, I thought there would be 10, maybe 20, resources to collect. Two- and a-bit months later, the number is instead around 90, or even more – way over 100 – depending on the way you choose to count the resources. Further, looking at the collection has made me ask a whole lot of the new questions about what it even means to be accessible, which I will talk about today.

One quick note before I do that: The insights that follow in this talk were not generated in a systematic way – it is not research (yet!). I have not done a systematic search for all of the accessible resources available on COVID-19 – and so the ones I am commenting on today are simply those that came across my social media feeds, as someone who is relatively connected into the information accessibility and disability advocacy space.

The main criteria that I applied in deciding what went on my list was that I would focus on mainly Australian resources, but would include those from overseas where (a) they presented information relevant and not contradictory to the Australian experience and (b) they provided a type of resource or topic not otherwise available in Australia.

While this means that what I am presenting today is not rigorous in the sense of being systematic research, it is probably a relatively realistic view of what a person seeking accessible information online might find. The average person is not going to do a research-like search of the whole internet – however they will probably be connected into a few key agencies who they know provide relevant information and they will end up using whatever they can find that way. In many ways, my way of compiling my list replicates this real-life experience, even though it is limited compared to systematic research.

Next slide please.

So finally, after all that background, what actually are the questions that the list of resources raised for me? The first question is this:

How quickly does accessible information come out, compared to other information?

From the time that the COVID-19 crisis really started taking off in seriousness in Australia, which was around mid-March, we were inundated with information about it: rolling news coverage in newspapers and the nightly news, notifications from all the services we use about safety, information from our employers and so many others.

It would make sense then that this would also be the time when accessible information started coming out too.

The earliest accessible information did also come out in mid-March – mainly from a few key disability advocacy organisations and some specialist information access services. The NDIS also put out some information at this time, focusing on what COVID meant for its clients and the delivery of its services. This was all very needed and very appropriate. The information largely focused on some foundational issues that everyone was grappling with at the time, like “What is COVID-19?”, “How do I keep safe?” and “How do I properly wash my hands?”.

Some of the information went into greater depth from a disability perspective as well, for example, talking about safety in the context of having support workers in one’s home. It was all really useful.

However, with the exception of the NDIS information, all of this information was just from the community – it was not provided by government. Government-branded accessible information did not come out until the end of March – almost 2 weeks after the crisis was really being considered very serious. Notably, the government was also criticised at the time for their lack of a timely public health campaign on COVID-19 in general, irrespective of accessible information, but nevertheless more official information was available earlier from government in standard information formats.

That timeline really should have been the same for the accessible information – particularly in a crisis that has disproportionate impacts for people with disability. In a crisis that is escalating quickly, the timing of information really matters.

Next slide, please.

The next question my list got me thinking about was: Which accessible formats are covered, and why?

My list eventually covered information in many formats:

•           Easy Read

•           Easy English

•           Auslan

•           AAC inputs

•           Easy videos

•           Large print and Braille

•           Picture stories

•           Social stories

However, well over half of the information was in Easy Read or Easy English format, and Easy Read was the format that the most separate providers of information created. The next most common was Auslan. All of the other formats only happened in a few cases in comparison and were less commonly from Australia.

The question that follows is why the breakdown of information happened this way – why are some formats more common than others? It is impossible to know the answer for sure. An optimistic assessment would say that those most commonly available are what there is more of a market and need for, however, I fear it is also about some other things as well.

(a)        Is it also about what there is time and resources to produce, and which formats are seen to be “easy targets” for claiming that inclusion and accessibility have been “done”?

(b)        Further, is it also about which formats the social purpose sector and general public have been trained up to know about already? These formats are of course important and have been highlighted for a reason, but they also are not the only ones.

A thorough approach using multiple formats has never been more important than now, a time when people’s lives really depend on getting information in the formats they need.

Next slide, please.

A third question: To what extent is accessible information kept up to date?

One of the huge challenges of providing accessible information during the COVID-19 crisis has been the fast-moving nature of the crisis, and therefore very frequent changes to the information required. Quite often it has seemed that as soon as one set of information is released, it is already out of date or another update is needed. I do not think that I have ever before seen new rounds of accessible – or really any – information be needed or come out at the speed that it has over the last two months.

In general, the accessible information available on my list has been kept relatively up to date, although admittedly with two big caveats on that: (a) it has been kept up to date on some topics more than others and (b) the heavy lifting on keeping it up to date has been shouldered by some providers of accessible information more than others. This also means that some formats are more likely to have been kept up to date than others, with Easy Read, Easy English and Auslan kept the most updated, in line with having the most information available in these formats, as I spoke about earlier.

My reflection on this is that the issue of keeping resources up to date is a timely challenge in information accessibility. One of the real risks of providing accessible information is that, when done poorly, it can sometimes become a tick-a-box form of inclusion – “OK, accessible info done, now we can move on” and no one reviews the resource for a long time. High quality providers of accessible information do not do this, of course, but some others do. In the past, where the issues covered have not been so fast-moving, the lack of updates has been allowed to happen, perhaps almost by accident. But the fast-moving nature of this crisis demands something more – and perhaps this is a good thing, if it highlights the importance of keeping accessible information up to date in general.

Next slide, please.

Closely related to the issue of keeping up to date is the next question: Is only the baseline information covered in accessible resources or the same variety of topics that others receive?

One of the things that I noticed early on in keeping my list is that a huge amount of accessible resources, particularly from outlets that do not specialise in accessible information or disability advocacy, tended to cover questions like “What is COVID-19?”, “How do I keep safe?” and “What should I do if I get sick?” These are, of course, really important, and foundational questions that people need to know the answers to – but the issue is that many of the resources then did not go beyond these questions.

This was at the same time as huge amounts of new rules and laws were coming out about what citizens could and could not do. It was at the same time as people were struggling with staying home so much, and as issues about grief, mental health and loneliness really started to some to the fore. It was at the same time as people had to find new ways of doing things, re-arrange their schedules, live, learn and work differently, and use new resources. It was at the same time as people were losing their jobs, seeking new income support, or having their financial needs really change as the crisis deepened.

The providers of accessible information who went into the most depth did start to cover some of these more detailed sub-topics of COVID-19, and this was really important and beneficial. For example, those who went into the most depth covered things like the laws and rules to abide by, how to manage and cope at home, how to address mental health problems and grief, and provided easy guides on how to use Zoom, and explainers on things like PPE and face masks.

These topics are really important and should not be left out of the accessible information. I think the lesson is that while many accessible formats, including Easy Read and Easy English, require only the key points of information to be covered in any single publication, people who use this information are still interested in many different aspects of what is happening – and it is entirely appropriate that different accessible resources are made available on the different sub-topics. Otherwise it is leaving out very key and important parts of what is happening for people who really need the information. I think the absolute pertinence of the detail to life and death in this crisis has perhaps created a new level of appreciation for the need for all the detail to be covered in accessible resources in general. 

Or at least I hope that is the case.

Next slide, please.

All of this leads to the next question: How, and by who, is accessible information produced and disseminated?

In the majority of cases, provision of the accessible information on my list was done by specialist information access services and disability advocacy groups, and sometimes by service providers or groups like the NDIA. On the one hand, this actually seems very sensible, as these are presumably the organisations with the experience and expertise to produce good quality accessible information. These organisations also presumably have a readership with disability who already know them, trust them, and seek information from them on a regular basis. Therefore, they are logical places to distribute accessible information in an already scary and unsettling time.

On the other hand, though, leaving the production of accessible information to these groups at a time of such critical public health messaging could also be seen as other information outlets not fulfilling their responsibility to make their information accessible. Should news services and governments also, for example, be involved in producing accessible information, and at what scale? With the exception of Auslan translations on a few key news broadcasts, mainly of emergency announcements, and some closed captioning, there is little other accessible information from mainstream news organisations. There is some government-branded accessible information on COVID-19, but should there be more?

I do not think there is a clear answer to these questions and it is probably an area where it’s not clear-cut – obviously, the different parties need to work together to provide the whole scope of information. Nevertheless, it is interesting to think about.

One final thought on this is that a few disability advocacies groups have provided hub pages of information and information triaging services since relatively early in the crisis, and more recently a dedicated hotline and website for accessible COVID-19 information has been created. In some cases, this work has also been requested and supported by government, as part of the government’s effort to provide increased information and safety to people with disability throughout the crisis. This kind of hub and information triage role, including the support from government for it, is a really important part of the answer to this question about how accessible information is produced and disseminated. It means that people do not have to search themselves for information that has been made by different groups but can have a centralised place that is providing it to them. This, in itself, is part of what makes information accessible. 

Next slide, please.

The final question I have been thinking about is: Who checks the accuracy and quality of accessible information?

At a time when good messaging is of critical importance, it is vital that any accessible material provided to people is both accurate in its medical and social information and good quality, in terms of following accessible production guidelines – for example, using proper formatting, pictures and sufficiently easy language when making Easy Read information. Without being accurate and high quality, the information is less useful and, at worst, can confuse people or even give them the wrong information.

The difficulty is that accessible information is an area that has not ever been regulated or subject to quality control checks in Australia. At the best of times, the quality of accessible information varies. This matters and is something that needs greater attention all the time, but it matters even more when people’s lives depend on it right now. The ideal scenario would be collaboration between producers of accessible information who are well-trained in how to do it and between health experts who can check the accuracy of the medical information included. However, this is also hard to achieve at the moment, when time and resources are so stretched, and it is so important to get the information out quickly.

Again, this is one of the questions where there is no easy answer, except to say that when people’s lives depend on it, thinking through issues of accuracy and quality is even more important. 

Next slide, please. 

That is all I have to say today and now I want to have the time left hand over the time left the questions. The reality is that I neither produce nor rely on accessible information about COVID-19. I am just an interested observer. I know there are many people at this webinar today who are experts in using and making accessible information and I am keen to understand more about what you are thinking and wondering about during this strange time. I know many of you have already been posting questions in the Q&A feature if you have not already, please do so now if you have things you want to ask or say.

Please feel free to ask questions, but also please reflect your experiences in what you type into the box as well. I want to learn from you.

Thanks for your time today everyone.

Professor Iva Strnadová

That was wonderful Ariella. Thank you so much for providing us with such a such important insights into how to develop and how to make the world more accessible for people with disability. As you rightly highlighted, it is a basic human right to have information presented in an accessible format and in contexts such as the COVID-19 crises, it can really save lives. Thanks to you, we now know how to do things a bit better.

I hope we have been able to encourage you all listening and following this webinar to submit questions with the question and answer function within Teams Live Events. You can still continue to do so. It actually looks like there are quite a few questions and I want to go to the first of them.

This is a question from Aine: “With the increasing availability of accessible information, has the quality improved Ariella?”

Dr Ariella Meltzer

It is a really interesting question. Thanks, Aine, I think in general some of the quality has improved. I think that particularly in Easy Read information, that I specialise in, I can see that people are following some of the guidelines a bit more than they used to, which is great. There are still examples of instances where that is not the case, or instances where information has been branded Easy Read that does not necessarily meet the guidelines. I am not so much of an expert in some of the other methods, so I will not comment on the quality considerations there.

Professor Iva Strnadová

Awesome, thank you Ariella. Another question we have here is: “Whether you could clarify the difference between Easy Read, and Easy English?”

Dr Ariella Meltzer

Yeah, this is a really interesting point. I think it is one that is not understood very widely in the sector, and it is also probably one where there's different opinions on. I think that with Easy Read, there is a few different things to consider. I think the most widely understood difference between them is that probably Easy English is even easier than Easy Read. Probably that is the difference that most people agree on. Then there are some areas that are a bit more debated. For example, some people would say that Easy Read is specifically designed for people with intellectual disability, whereas Easy English might be used for any number of groups that have low literacy. But again, not all groups agree on that and the branding of information is not consistent in highlighting those differences.

I think this is one of the areas where there is still a lot to be worked out. In some cases, I think it is also a case of people just using different terminology to refer to information that is not too different from each other.

There is a resource provided by the group Access Easy English on their website, which details in a more systematic fashion, some of the differences. So, the person who asked that question, they might want to refer to the Access Easy English website and the clarification of the differences, which is set out in the table.

Professor Iva Strnadová

Thank you so much Ariella. I better read it because I think I need to update my knowledge in this area. The third question that we have here is anonymous: “Who, if anyone, should have responsibility for centralizing information and also in monitoring its availability, accuracy and quality?”

Dr Ariella Meltzer

The 10-billion-dollar question! I am not sure that there is a good answer, and I guess it goes back to my slide about who checks the accuracy and quality of information, but also the question about who produces and disseminates information. There is probably an argument for whatever is done to be government supported, but I think having that centralization and having that accuracy and quality check probably relies on the specialist knowledge of the specialist information access services, and disability advocacy groups. So, it is a good example of where collaboration would probably be required. On the one hand, get the authority of branding it and centralizing it from government, but then the specialist knowledge to actually do that from the people who do it every day.

Professor Iva Strnadová

Thank you so much Ariella, we have another anonymous question and that is: “How do organisations provide multiple accessible formats with limited resources?”

Dr Ariella Meltzer

Yeah, that is another 10-billion-dollar question. And again, I think that is probably a situation where that collaboration piece is needed. So, people produce maybe a more limited set of accessible resources that they have the expertise for and that fit within their budget, but then have the capacity to collaborate with others who are providing different resources. Can you repeat the question Iva, there was another bit in it?

Professor Iva Strnadová

“How do organisations provide multiple accessible formats with limited resources?”

Dr Ariella Meltzer 

Yeah, so I think it is about collaboration. And I also think it is about looking at that centralization piece of bringing them together. Building in the resourcing question from the beginning. It is part of what the bigger organisations can do, I think, is important. I think it is about knowing who your audience is, so I do not think that every organisation needs to do every type of resource. It is about thinking what the particular group who accesses that organisation needs. Now, obviously for some of the big organisations whose work spans more different people who need different types of information, that will be harder. Maybe those groups have more resources to produce more formats. Maybe they do not and if they do not, that is where the collaboration piece comes in.

Professor Iva Strnadová

Thank you, Ariella. Another anonymous question which asks: “Do we need to advocate for bigger policy making and legislation than organisations have to do it instead of being confused, as it is not against the law?”

Dr Ariella Meltzer 

I think maybe it is about some of the policy framework around that being clearer. So, going back to the beginning of my presentation, I spoke about it being part of the human rights legislation and the anti-discrimination legislation. It was interesting when I did the bit of the slide or the bit of the information about the Disability Discrimination Act, because information is not actually specifically referenced there, but it is implied through goods and services because providing information is a service and the product of information can be considered a good.

So maybe it is about the policy frameworks being more specific to actually say, “Information is required”. If that is in there, maybe it becomes easier for the smaller organisations because it is legitimate, and it has got authority behind it.

Professor Iva Strnadová

That it is a perfect point. Thank you. We have here a question from Leanne and she is asking. “Could you comment on issues of diversity around accessible information. What kinds of challenges and opportunities are there when we think about disability accessible information for Aboriginal people or for others from culturally diverse communities?”

 

Dr Ariella Meltzer 

Yeah. I think that is a really excellent question. One of the things that I know is being considered by many of the organisations who produce accessible information is the picture sets that go with Easy Read and Easy English information.

The picture sets that's considered best practice at the moment is made in the UK and the diversity pictures that are represented there are very much the culturally diverse groups that you would have in the UK, but not here. Similarly, a lot of the branding of stuff looks like UK items, so you know, even things like police uniforms look like a UK police uniform and not what we see in Australia. Pictures of ambulances look like British ambulances, not Australian.

Having resources available that are specifically Australian is really important, so that people can see themselves represented in the information. And they firstly know it applies to them and they feel like they belong in that information, because they can see pictures of their community.

I know that there is some work going on producing Australian images, I think to supplement the UK set up. But I am not sure where it is up to right now. It has been underway for a while.

Professor Iva Strnadová

Thank you so much Ariella. I have a question from Michelle, she's asking: “Even if the information has been written or produced, how will people with a disability know it is there or where to look for it? Whose job is it to tell them where to look?”

Dr Ariella Meltzer 

Yeah, that is a really important question. There's a couple of ways to answer that. Part of it goes back to that question about who disseminates it and the point that I made at the beginning of addressing that question about the role of service providers or disability advocacy groups that people already know and trust giving out that information. And so, while it is important that government and news services are also involved, having those organisations involved from the disability community that are already trusted is a really important pathway of getting it to people.

The other part of answering that question is thinking about issues of low literacy among many people with disability and thinking about what happens when people cannot go looking for the information themselves? In addition to that, also thinking through the way the information is used. So again, drawing on my background in producing Easy Read information, some of the best Easy Read information that I've seen has included the information that is targeted to the person with intellectual disability, but also included information written in a more standard format that addresses the person's supporters or advocates, their family, their friends who might be using that information with them. Not with instructions, but detailed guidance on how to help the person use that resource. And I think that is a really important addition to some of the easy information that gets distributed, that can help us take it up in the community.

I also think it is important to recognise that even when easy information, whether it is Easy Read or Easy English, is provided in a format that is intended for people to read themselves, quite often the way they’re used in the community is by supporters or advocates, family or friends, drawing on that information to get ideas about how to explain things to people with intellectual disability verbally in easy ways. You know, quite often, family members will say, “Oh my gosh, you know COVID-19 – or any other number of complex things – are so complicated. I would not even know how to go about starting to explain this to this person who I care about. What can I draw on to help me think about how to explain it in an easy way?”

I think that in the community that is a realistic way that a lot of the easy resources are used. So, including those kinds of guidance information documents alongside the actual accessible material helps to get it to the people who need the information as well.

Professor Iva Strnadová

Thank you so much Ariella. We have another question about the accessibility of research, so it says: “Most of the research papers are not accessible. As researchers should we make our published papers accessible such as providing Easy Read version of our research results?”

Dr Ariella Meltzer 

Yeah, I think that is a really important point, and I think that is something that researchers are very, very, very slowly moving towards. For example, some of the biggest disability journals are starting to require an Easy Read summary at the beginning. In many cases it is probably not easy enough, but it is a slow step in that direction.

Research centres within universities who are community facing have also in many cases started to produce easy summaries of their information. So, for example, many of the reports I have worked on at UNSW particularly with disability focus include an Easy Read summary of the main findings as well. Making very slow progress on it. Some researchers are more tuned into it than others, but I think it is certainly something that is important, and I hope to continue to see the University sector move towards.

Professor Iva Strnadová

Thank you so much Ariella. I very much agree with you over here. We have a question from Alex: “When writing content or information, it can be hard when working with others to convince them of the importance of making information accessible. Also, it can be quite subjective. What I think might not be accessible information or Easy English, others might think it is perfectly understandable. Do you have any tips we can help others to learn what accessible information is and that the content they are producing is not always just aimed to people like them?”

Dr Ariella Meltzer 

Yeah, I think there is a number of things tucked away in that question. One is about increasing acknowledgement of the importance of accessible information. One of the really interesting points that you can raise to support that is even just the statistics on how many people might use it. So, one in five people in Australia have some form of disability. Not everybody who has a disability will need information in accessible formats, but it starts to give a picture of potentially how many people it might involve. When you broaden it out to consider that accessible information, particularly easy formats, are not only used by people with disability – [also] people who may have low literacy on non-functional literacy for any number of other reasons – that figure almost doubles. So, it is something like 44% of adults in Australia have non-functional literacy, which is way higher than what a lot of people would assume. Even just highlighting the sheer number of people for whom the accessible information might be useful, I think goes one step that way.

The other part of that question was about kind of knowing what actually good quality accessible information is and being able to have some judgment of what actually is accessible rather than just thinking of what it might be. This comes back to that question that I had at the end about whether there needs to be any checks on the accuracy and quality of the information. Obviously, instituting a checking system has its own inherent risks and is not necessarily a good idea. But I do wonder whether some type of accreditation on producing accessible information might be useful and what that would do would mean that the organisations who really want to specialize and do a good quality job of producing accessible information and have it as part of their core business could get that accreditation and kind of really rise to the top of the quality considerations there. Whereas kind of some of the organisations that just think “Maybe we should produce a resource for our members?” but it is not really part of their core business, they might not go down that path and that might start to mean that kind of less of the ad hoc resources are created and there is more of a move towards only people who really have the skills to produce good quality accessible information doing so.

You know, who makes that accreditation system, how it is administered, all of that is really complicated, and I have got no idea. And you know, it might be an impossible suggestion that I am making here in answering this question, but there would be some benefits to it if it were administratively possible.

Professor Iva Strnadová

Thank you so much Ariella. We have here a comment from Rachel from the Council for Intellectual Disability. She says, “Thanks for your insights and reflection. We are certainly thinking similar things and have some of the same concerns about quality of information and distribution. We are now working with New South Wales Health around accuracy and quality. We are sending printed copies of information to our membership as our understanding is that some people with intellectual disability access information online and others do not. Any tips for distribution are welcome?”

And I think you have answered it already because you were talking about how this can be distributed. Is there anything to add to it?

Dr Ariella Meltzer 

Nothing to add, except that I think that the distribution of hard copies is really important, and probably something that I missed in my earlier information. I think there are a lot of people who do not access the Internet, particularly where there are accessibility considerations in play. So, having the hard copies is super important, alongside issues of web accessibility where the digital information also has to be accessible. That is not only for screen readers, but also for other technologies, such as, for example, operating a computer through an eye gaze machine and being able to have the technology behind your websites working for that.

Professor Iva Strnadová

Thank you, thank you, Ariella. We have here an anonymous question or comment. “I would also say I'm suspicious of who is providing this information as a person with a disability. I need information that I can trust. Perhaps Ariella can talk about the importance of trusted sources and what makes or builds the trust?”

Dr Ariella Meltzer 

I think this is a really good example of the role of both specialist information access services and disability advocacy groups in producing accessible information for different reasons for each one. So, there is trust built around the roles of specialist information access services, because given that it is their whole core business, there is an understanding that they are focusing on doing it well. That makes for trust in the provision of the information.

The other thing that makes for trust in the provision of the information is where disability advocacy groups do it. Because those advocacy groups often help people advocate on a whole bunch of other things, they have developed their standing or their street credibility with people over a period of time. Then if information is distributed through them in times of crisis, then they are building on that with the membership as well.

I think that is important. Having said all of that, I still do not think it lets new services and governments off the hook in terms of providing the information. Particularly in a crisis like right now where things are changing so rapidly, you want to make sure that those other groups are able to keep up with the information. So, I think there is still that degree of collaboration needed, even while the trust piece is important.

Professor Iva Strnadová

Thank you, Ariella. We have here a question from Leanne, “People who do accessible information well often learn by experience without any formal set of capabilities or skills. If we are to imagine the perfect future for accessible information, how do we begin to properly train people? You have mentioned, Ariella, accreditation, but what are the kinds of skills that would be needed?

Dr Ariella Meltzer 

Practice. Quite often where resources are produced from organisations that do not specialize in producing accessible information, it is probably someone who has never written one before who has a look at a few on the Internet and tries to write one themselves. Which is, kind of, probably where the people who have developed their expertise through practice of comes from – but I think acknowledging the role of that practice is important.

There is also a role for checking with the people who are using the information about whether what you are producing is good quality and taking the time to learn from what they have to say. In my production of Easy Read information for UNSW there have certainly been instances where I thought something was accessible in the way it was produced and then the feedback that we had from the co-researchers or the disability advocates that we work with has been that it's not quite as accessible as I thought it was. I have had to go back and so learning and taking those lessons back, taking the time to consult, taking the time to do “user testing”, as horrible as that term is, is all really important in building that base of knowing how to do it.

Professor Iva Strnadová

Thank you, Ariella. We have here a question from Scott. He is saying, “Just following up an earlier question on diverse groups. There is cultural accessibility and disability accessibility. I am thinking of some awesome materials produced by organisations like First Peoples Disability Network for their community. How can these two aspects of accessibility be brought closer together?

Dr Ariella Meltzer 

Yeah, it is a really good point. It fits in with what I was talking about in the last question about collaboration between people who specialize in producing accessible information and people who have the medical expertise. Then you have Scott’s piece of also including cultural expertise there. Consultation and drawing people from groups like First Nations who have disability experience is key there. Then again acknowledging that trust piece of why people are seeking accessible information from particular organisations that they trust. If it is because that group also understands them from a cultural perspective, then that is really important as well.

A good example of where very specific resources may be required on the one hand, but then on the other where more of that knowledge needs to just be embedded across all of those as well.

Professor Iva Strnadová

Thank you, Ariella. We have a question to wrap up with from Elizabeth, “Where to from here?”

Dr Ariella Meltzer 

There are a few things. One is organisations need to think about whether they are the right ones to be producing accessible information. The organisations specializing it, obviously need to. Some organisations, such as what we just discussed cultural groups, may need to produce that information. But there may be some other groups who are currently making it, where perhaps it's not their role and they need to step back.

The move towards bringing together different accessible resources in hub pages or information triage or dedicated hotlines is really important, and that is a step in the right direction, because it helps people find the information. I think we need more guidance around how to use those resources in the community. Going back to what I said about including complementary guidelines for supporters and advocates and family members about how they might help a person to use that resource.

There is also a need to sort out some of the questions about where the boundaries of the different formats are and to revise that list of formats that are in the public consciousness. The ones that we need to do, such as Easy Read, Easy English and Auslan are in the public consciousness, but are there more?

The note I would end on is just when you see people using accessible information, particularly in circumstances where you might not have thought they would, point it out. Because the more that everybody knows that accessible information is used, the more it will be recognized as something that is needed.

One of my favourite places where I have seen accessible information in the past, which is not COVID-19 related, is in polling stations on voting day. They quite often have Easy English information there. I think having it in public view on a place where everyone needs to go by law is really great. If there are more instances where we can put accessible information on public view, the more people will know about it and more space will be made for it. 

Professor Iva Strnadová

Thank you so much, Ariella, this was a fantastic presentation.

I think one of the very key things that we can take from your presentation but also from the questions and contributions of people within the QnA section is that how important it is that the people who will be using the accessible resources are really engaged in co-design and co-production of these materials. I think that is a very critical, critical thing to take away, among others.

Thank you to all the participants for joining today has been very interesting and very important presentation and discussion. The event has been recorded and this will be distributed to all of you who have registered on Eventbrite following today. There will be numerous accessible formats accessible to you. A transcript, audio recording, recording of PowerPoint, speakers, and Auslan interpretation.

To stay up to date with more events and information, please go to UNSW.to/subscribedisability

In one word, thank you so much for joining us today. Thank you, Ariella, for fantastic presentation. Big thank you to our Auslan interpreters and stay safe everyone and stay in touch with us. Bye.