People First Canada President, Kory Earle, and Azrieli Adult Neurodevelopmental Centre Patient Advisor, Victor Pereira, spoke at “Intellectual/Developmental Disability & COVID-19: Challenges, Opportunities and the Road Ahead ... Lessons from Those Left Behind” a national policy summit led by People First Canada and Inclusion Canada on Thursday December 3rd, 2020. Read their speeches below which address health care ethics and access during the COVID-19 pandemic.
Introduction | Kory Earle
Hello everybody and thank you for having us here today. This session is about access to healthcare and how to respond in the middle of a pandemic. Healthcare is a very broad topic. AND it includes talking about our mental health. I cannot stress enough how important it is to talk about mental health and COVID. These past 8 months have shown us that mental health issues have almost become a pandemic in themselves. People are struggling. It has not been easy on anybody. And we know it has been really hard on people with intellectual and developmental disabilities. COVID has put a spotlight on mental health issues. It has forced us to acknowledge and confront the challenges that people are having.
Challenges
When the pandemic first hit, it quickly became clear that we were facing a lot of challenges.
- People had to quarantine and isolate.
- They couldn’t see their family.
- They lost access to their usual supports.
- Some had reduced staff supports.
- Many couldn’t access their usual community supports.
Overall, we quickly realized that many of our members were feeling very isolated and alone. So, our staff and executive came up with a plan to reach out to as many people as we could. We started reaching out to People First members by phone. Email was not going to cut it for this challenge. Our people needed more connection than that.
We then shifted our work to include a COVID plan. We needed to create space for people to talk openly about their mental health and how they are coping with the challenges from COVID. From the beginning, we felt that this was just as important for people as having information about the virus itself. We reached out to our members and here are some of the things that we heard from people across the country.
What we heard from People
“I was always on the go outside and going places and then all of a sudden it was lock down and I was stuck in my apartment. I had to have my groceries delivered to me. I couldn’t visit my friends. I could visit my mom and that was about it and it was horrible for me.”
“I have not been able to see my family and my friends. Stuck in the house to the point I was afraid my depression and anxiety would go through the roof. I don’t like to be alone.”
“If I’m sitting down at home by myself, I get really depressed.”
It was obvious that some of our members were really struggling with their mental health. And we realized that we didn’t have the resources to help people with intellectual and developmental disabilities to deal with their mental health issues. And they didn’t know where to go either.
So, when we had the opportunity to join the project with the Centre for Addiction and Mental Health (called CAMH), we knew this could be a great way to help. They approached us to work together. And we’re so happy they did. This slide has the name of the course which is called “Mental health for adults with developmental disabilities during COVID: A virtual course for self-advocates.”
I’m going to hand it over to Victor who will share more about this course and what it means. Victor----
About the Course | Victor Pereira
Thank you Kory. The course is all about self-advocates (people with intellectual and developmental disabilities) dealing with COVID and how it impacts their mental health. This slide shows a picture of all the people in our course on a video chat call on WebEx. It is a 6-week course, where we learn about different topics like: anxiety, grief and loss, depression, sleep, healthcare communication tools, and problem solving.
We start each session by answering an icebreaker question, and then practicing a mindfulness exercise. Then we discuss the news about COVID, and talk about the topic of the day. We then break out into smaller groups where we discuss the topic further. A lot of our sessions use self-help booklets about mental health and we do the activities in these booklets in our small groups.
Some examples of what we have talked about include the HELP model, which helps people understand why they may not be feeling well. Here is a picture showing people with examples of these 4 things: Health, Environment, Lived Experience, Psychiatric. Another example is when we talked about where in the body we feel anxiety. This picture is taken from a workbook and shows the different parts of the body where we feel anxiety and a checklist that helps people identify these changes for themselves.
People with intellectual and developmental disabilities need support with their mental health and need people to talk to. The pandemic has worsened symptoms for many of us: people are feeling alone and scared.
With this pandemic, it feels like the world has been put on pause and we don’t know when it’s going to start up again. Because I don’t think you know this, it really impacted self-advocates, all of a sudden having our programs stopped.
The pandemic has put life into perspective, of how a really good support system can make or break you.
This course has allowed self-advocates from across Canada to get to know each other and build a community, where people are really open to talk about their experiences in a safe environment.
Over the course, I have seen people come out of their shell, and how the course has boosted their self-esteem; it means the world to me that self-advocates can make their lives a lot better through this course. Seeing people connecting with others online and be a part of a community of similar people has been an uplifting experience during this time. These little victories help us deal with the larger fight against COVID.
We need the government to support us during this time of crisis - you should be able to support everyone. People with intellectual and developmental disabilities are being discriminated against. We need more courses like this, to help support self-advocates with their mental health at this time. It is important for all self-advocates to have the technology needed to meet in this way and that we find ways for self-advocate leaders to work with people in healthcare to run courses like this. Kory – back to you.
Closing Remarks | Kory Earle
Thank you Victor. This work is very important. Did you know that almost 50% of people with intellectual and/or developmental disabilities also have mental health issues? This work is very important. We can’t leave people behind.
Doing this course together has taught us so many things. We have learned how to use some new tools for when we are anxious and depressed. Sharing in a safe space has empowered people. It has let them know that they are not alone.
Some comments from people in the course are:
“I find it really good, really positive, full of information, listening to peoples concerns, their stories, and wanting to find a way to help ourselves to deal with this mental health situation.”
“I really enjoyed the whole session there were some good discussions. We all do get anxious from time to time and it was good to learn some coping techniques.”
Message to policy makers
This pandemic has changed the way we do a lot of things. It has changed the way we behave – at work and at play. It has changed the way we interact with family and friends and our communities. It has changed the way we think about our world and what is happening in it.
It has also brought to light how mental health is affected by these changes and challenges. Mostly, we would like to see life go back to the way it was. But there are some things we want to keep.
Like this work around mental health. We don’t want this work to end. We have a message for all the policy makers out there. We are asking the government to keep focussed on mental health during the pandemic – and after the pandemic.
We know the healthcare system is stretched. But let’s not decrease access to mental health support. Let’s keep these resources available for people with intellectual and developmental disabilities.
Quite frankly, people’s lives are depending on this support.
More Information and Links
- COVID-19 Information for People with Intellectual and Developmental Disabilities
- Email for more information on Mental health for adults with developmental disabilities during COVID: A virtual course for self-advocates
- Guided Self-Help Booklet Series
- Mental Health and IDD: H.E.L.P. Framework, Nuts and Bolts of Health Care Toolkit
For self-advocates
For family caregivers
