By Yona Lunsky
August 2022
It’s not all bad news. Let’s talk about some good news for a change.
I have been in a blogging slump.
Over the past two-plus years, I have had a fire in my belly, pushing me to write about things that have gone wrong when it comes to the health and wellbeing of people with developmental disabilities and to advocate that they not be forgotten in Canada’s pandemic response plans. If I were to categorize these blogs, I would say they range from bad news to really bad news. At some point this winter, in the midst of a new variant and another COVID wave, my blogging fire just blew out. There were so many things to be upset about, I didn’t know which thing to focus on. It was a hard time personally too and I think I had to reserve my energy a bit more carefully. Since then, I have written a bit here and there, but overall, I have been quiet. How much more bad news could I write about?
However, this month, I have found a spark of inspiration and I am writing this blog to let you know about something very special that I have been a part of for almost two years. In 2020, we received funding from the Canadian Institutes of Health Research (CIHR) to offer courses across Canada to help self-advocates, families, and service providers learn more about the importance of mental health for adults with developmental disabilities during COVID-19. I wrote a little bit about the project when we started, as did self-advocate course facilitators Kory Earle and Victor Pereira in December 2020. With two new journal publications out this week about this effort, I thought it was time to put pen to paper and share some thoughts.
What we did: It started with a major pivot made in March 2020 at the start of the pandemic. Our ECHO Mental Health team out of @camhnews and @surreyplace was just wrapping up our pilot ECHO focused on the mental health of adults with developmental disabilities when the pandemic hit, and we could no longer meet in person as a Hub team. Programs shut down overnight, people were locked in their homes, and health services became unavailable. Our sector was in crisis, so we put our heads together to launch a COVID-focused 6-week virtual program for health and social service providers across Ontario using the ECHO format to teach urgently needed information, work through complex cases and scenarios, and build a community of practice. We published findings from that first course in the fall of 2021.
The Project ECHO mantra is #AllTeachAllLearn and behind that is a firm belief that we can be a learning community together, all of us. Over the past two years, I have been learning together with a vibrant team of scientists, clinicians, people with intellectual and developmental disabilities, and family caregivers about what is most important to address right now to help people cope with the pandemic, and how to explain things clearly so that people can understand them and take action.
After developing our ECHO course, we applied the same #AllTeachAllLearn way of working with two additional audiences: family caregivers and self-advocates. The two papers recently published describe how clinicians and people with lived experience worked together to reach and teach family and self-advocate learners from across the country about mental health strategies during COVID. Click on the links above to read about what we found, or check out a summary of the COVID and Health project here.
In a nutshell, we learned that “if you build it they will come”. But to build it right, you need to provide support to ensure accessibility for all. We had strong attendance in each of our programs, and we made sure that we offered help to anyone who needed it (e.g. providing 1:1 tech support, doing individualized orientation). We also learned that there are many experts in the room – that families can learn unique things from families, self-advocates can learn from self-advocates, and service providers can learn from service providers. And that when people from these different groups teach and learn together everyone benefits.
We learned that just because resources exist, it does not mean that people know about them or use them. We needed to show resources in the right context and give examples of how they can be used, including hard copies of resources for those who prefer them - because not everyone has a printer or can remember or find resources online.
Finally, we learned that it is important to be nimble – this means that when a new issue comes up (like vaccines at the start of 2021), you have to be ready to shift directions.
This project has been about trust, partnerships, and learning together. It has also been about honestly sitting with people in difficult situations and sometimes saying: We don’t know the answer to that, but we can try to figure something out. We will see what we can do.
Our work is not done. In fact, we are only getting started. Since running our national mental health courses, we received CIHR funding to offer and evaluate a second national program, this time focused on mental AND physical health. We have recruited more teachers with lived experience, we have developed new tools and resources, and we have broadened our evaluation. As of this month, we have trained almost 700 providers in our ECHO program, and approximately 400 families and 75 self-advocates have participated in courses developed for them. Stay tuned for updates about this project in future blog posts.
Before I got blogged out, I usually tried to end my bad news COVID blogs on a positive note by offering some helpful action or direction. It seems fitting that I end this good news blog with some difficult truths, harder truths that our team has learned in the past two years.
Yes, the community we have been able to build together during this crisis has been incredible. The courses we developed were relevant and I feel grateful that I could be part of something good that could help people and make a difference. However, the problems I wrote about in my bad news blogs are not fixed – they run very deep, and many people with developmental disabilities and their families are living in some very desperate situations.
Where do we go from here? We can acknowledge that while we can’t always fix things, we can still make space and be present to our own grief, our own trauma and to the pain of the people around us. This helps others to feel seen and heard while helping us to be more gentle and tender in the actions that we take. This is not nothing. It may help people to keep going a little longer, to stay afloat.
Honestly, I don’t know what is going to happen next and I am not certain of how long people can manage with so much less than what they need and deserve. The only thing I am certain of is that we have to keep going amidst all of this uncertainty, something that is truly very difficult. When we can, we can try. And when we try, we do so with the knowledge that there are many of us trying the best we can together.
I am going to use the good news from our COVID and Health project to fan that spark of inspiration and continue advocating and pushing for change to improve the health and wellbeing of adults with developmental disabilities (we have learned about some strategies that work so let’s build on that!).
Here is a video of me with my sister dancing to Try Anything, one of several accessible dance videos made for our most recent self-advocate course series that inspires me to keep going. Dance and sing along!
Additional Resources
- Mental health and COVID-19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities by Lake, et al.
- ‘More together than apart’: The evaluation of a virtual course to improve mental health and well-being of adults with intellectual disabilities during the COVID-19 pandemic by St. John, et al.
- Easy Read Version: ‘More together than apart’: The evaluation of a virtual course to improve mental health and well-being of adults with intellectual disabilities during the COVID-19 pandemic by St. John, et al.
- Virtual education program to support providers caring for people with intellectual and developmental disabilities during the COVID-19 Pandemic: Rapid development and evaluation study by Thakur at al.
- Accessible dance videos made for our most recent self-advocate course series
- Many of the resources covered in our courses can be found at www.hcarddcovid.com/info
