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If we don’t count, they don’t count

If we don’t count, they don’t count – Numbers and stories about COVID, vaccines, and developmental disabilities in Canada and the UK

By Yona Lunsky

More than 10 years ago, I remember hearing an Ontario Deputy Minister speaking about the closure of institutions in our province with some advice for the future. He said that when it comes to government, simply having anecdotal examples did not add up to numbers that could be used to influence cabinet decisions. They needed more than a collection of heartbreaking stories to demonstrate the extent of a problem, determine the best way forward, and act upon it. Our H-CARDD research program and others like it have worked hard to establish partnerships that allow us to get those numbers and move beyond anecdotal information. Through linking existing administrative data from across sectors, we have used the power of numbers to demonstrate  how adults with developmental disabilities use healthcare in Ontario,  and what it costs. In 2019 we went further and highlighted some even more concerning figures around costly healthcare use and premature mortality. Indeed, we found that adults with developmental disabilities were almost four times as likely as other Ontario adults to die prematurely, before the age of 75.

Having this kind of information is crucial when it comes to healthcare decision-making, especially during a pandemic. Our colleagues on the other side of the pond in the UK have instituted a number of processes so that they regularly count and report on developmental disabilities (what they call “learning disabilities”), and therefore have been able to accurately demonstrate what is occurring for people with developmental disabilities, as well as other disabilities during COVID. This information has been incorporated into their Joint Committee on Vaccination and Immunization (JCVI) guidance, and as more evidence has emerged, further adaptations have been made.

Despite having some ideas about how we could track similar COVID numbers here in Canada, it has not been mandated and acted upon by our government. This means that we don’t have reliable numbers from our own country to draw upon, nor an established process embedded into how we make decisions. It is not surprising then that we have not been able to rapidly present numbers to inform decisions. The UK numbers have been influential not only because they could not be ignored by decision makers, but because the people telling the stories, including those with disabilities themselves, could use these numbers within their narratives. This puts the numbers in the public domain; they are heard by people with disabilities, by families, and by the broader public.

The importance of stories: “People don’t care what you know, till they know that you care” - Cormac Russell 

Numbers on their own are not enough. We don’t know what the numbers mean and, especially during COVID when numbers are thrown at us every day, they don’t stick to us without them being contextualized. Indeed, when we don’t have a story introducing us to someone we can relate to, we can think of statistics as a problem for other people while we focus more on what we already understand and are familiar with. To really build partnerships, we have to be able to speak multiple languages. For some people this is the language of numbers, but for most people, it is the stories that resonate. Especially for a group of people on the margins, whose stories are silenced, not believed, or just not heard, building a space for these stories to be told really matters. As a scientist, it is through these stories that I can start to understand what I could not explain with numbers alone, and that I can get new ideas about what needs to be done. And more importantly, by deeply listening to these stories, and providing a place for them to be told, trust can be built. It is the packaging together of these stories with the numbers that can truly lead to change.

In the UK, they have not only done a good job of sharing relevant numbers, but they have paired these numbers with stories from many exceptional storytellers including healthcare providers, researchers, as well as a Baroness in the House of Lords, famous book authors, stellar sibling print and TV journalists, and even a very popular VJ for the BBC. But first and foremost, they have a strong self-advocacy movement, with funding for several self-advocacy organizations, and people who have been given the training, support and platform to tell their own stories and who work together with healthcare organizations. Some of the most compelling statements that have inspired me to act during this pandemic have come from people with developmental disabilities in the UK.  These groups did not form for the first time because of the pandemic. They were already in place, with lots of experience (sadly) advocating around health inequities, and the COVID circumstances simply pushed them to speak louder.

In Canada, we do not have the same story telling infrastructures as of yet. Our media are less used to recognizing the importance of featuring these stories, and they still have a ways to go in terms of knowing how to best include the voices of people with developmental disabilities. This means that people feel less heard, and that the public can’t have the understanding of what is going on that is required if the needs of this group are to be prioritized.

Numbers and stories: Who shares them and who tells them?

I have been thinking about how changes have come about in the UK at different stages of this pandemic. Immediately, we saw a frailty index being inappropriately applied and GP’s being instructed to put Do Not Resuscitate Orders (DNR’s) on their patients with developmental disabilities. Numbers and stories were quickly shared to address these terrible errors. And they were corrected (although concerns about DNR’s were flagged again more recently). Numbers with stories about COVID deaths and the impact of COVID restrictions have led to people with developmental disabilities being included in UK vaccine prioritization efforts. Recognizing that there were problems with the initial proposal, that only focusing on people with the most severe disabilities was not supported by science, was overly complex to implement, and didn’t make sense to the many people impacted, numbers and stories were shared by many people in order to improve upon what was first proposed by the JCVI. In this last week, the criteria for Stage 6 was expanded to include all individuals with developmental disabilities on the GP registers.

Who tells the story or who shares the numbers makes a difference. When I hear someone with a developmental disability on primetime news telling the public about how they are more likely to die of COVID than other people, and that they are scared of being sick and having to go into the hospital alone without anyone to support them, I listen. When I hear an entire group of self-advocates doing this, I listen even harder. When I read an article in the BMJ written by clinical experts, one of whom has an appointment in the House of Lords, I pay attention. When I see a tweet sent in the middle of the night by a VJ who is also a sibling and has a couple of hundred thousand followers more than I do, asking anyone for advice on how to help her distressed sister in hospital with COVID to accept oxygen, I notice this and so did many other people. What led to the JCVI expanding its inclusion criteria for developmental disabilities? All of these together. Yes. But when a famous person speaks out about her family situation it reaches a wider audience. We all have our platforms. Some of us have bigger platforms than others. Who tells the story matters just as much as what the story is, and what the numbers are that go with it.

As we work so very hard to make sure people with developmental disabilities are prioritized here in Canada, we can learn a great deal from studying what has led to change in the UK. We are at a disadvantage by not having our own numbers and communicating to the public about how much we value this group by failing to do so. And although we are seeing some storytellers working tirelessly to get their stories heard (people with disabilities, families, journalists, healthcare providers and scientists), we are not having the same traction. Until we have our own numbers, we need to understand the numbers from elsewhere. We can share them, so long as we appreciate that numbers from elsewhere reflect what is happening in certain contexts which may or may not be the same as our context. We need to combine these numbers with stories from diverse voices, and we need to provide platforms for these stories to be heard. We need to keep at it, build momentum, build community, and come together. Perhaps having some famous book authors or VJ sisters in the mix might help, but I believe that each of us can do more to highlight and amplify the voices of those most impacted and that will make a difference.

If you have a story to tell, if you have numbers to share, or if you have a platform that others can use, now is the time. We need to make sure that Canadians with developmental disabilities know they are valued, that we have a vaccination strategy that includes them, and that this strategy can accommodate their unique needs. If you would like to understand these issues from a numbers perspective, you can read our review of the literature here. To understand how policies are recognizing this group across the country, go to www.readyformyshot.ca, a grassroots community effort that is amplifying the perspective of people with lived experience, and tracking media stories on this group across Canada. If you want to know more about vaccines, and COVID healthcare issues more broadly, as they relate to developmental disabilities in Canada, please explore www.hcarddcovid.com/info.