Having a Sibling with a Disability During COVID-19

It’s March 2020, and the news, social media, and our daily conversations begin to be consumed with information about this thing called COVID-19. Like a lot of parents, we made the cautious choice and pulled our children out of daycare.
And as instructed by the Government we limited interactions with people to essential only, like grocery shopping. All of a sudden, my husband was working from home full-time, my hours increased to support a non-profit client, and I was juggling a 3-year-old and a 11-month-old.
It has been hard. Every person has been hit by this pandemic in their own way, however, there is an additional, unique element that is added to our own personal experience, and that is having a brother with a disability who is at high risk.
My husband and I chose to limit interactions with others early for the safety of our family, but mainly for the safety of my brother.
My brother, Paul, who is 34 years old, has a Microboard, which allows Paul to live in his own home, and has a support network that helps manage his funding, staff, and daily routines. If Paul didn’t have a Microboard, he would most likely be living in a group home with someone else managing his funding, dictating his daily activities, and choosing the staff that work with him. By having a Microboard Paul can live independently, which our family really appreciated during COVID-19. The moment COVID-19 hit BC and things started to shut down we had the freedom to lay-off Paul’s day support staff and have him isolate with his friend and now caregiver.
Things were not easy at first. Paul was terrified and was living with a previous caregiver before COVID-19.
When my family and I asked the previous caregiver to follow the Provincial Health Officer’s direction to stay home and limit public interaction for Paul’s safety, he refused. Then he quit. What do we do now? Do we have Paul move into my house that is barely accessible, and quarantine himself with a baby and a toddler? Does he move in with my parents who live three hours away, again in a home that is not accessible? Paul has his home. He doesn’t want to leave his home. Can I blame him? No! It was incredibly stressful, but because Paul has a Microboard, a support team, and funding, we quickly hired a new caregiver, a close friend of Paul’s who happily sacrificed his lifestyle to help keep Paul safe.
I’ve heard many stories of family members with loved ones with disabilities who have been challenged emotionally and physically during COVID-19. All different, yet all a little similar. I’m sure we can all relate and say that this has been really damn hard.
The thing that has gotten Paul, myself, and my family through this is knowing that Paul is safe and comfortable in his home. He can control his contact with people. He doesn’t have numerous staff coming throughout the day, nor does he live in a home with multiple other people with disabilities. I understand and respect that many people do not have the option that Paul has living in his own home and many people with disabilities live in group homes, but during COVID-19 that would be scary. As we’ve seen, COVID-19 is a sly creature that likes to get into shared living spaces and infect each resident one by one.
Many families don’t have a choice and live in fear not knowing if COVID-19 is going to affect their loved one with a disability. Also, to keep the residents safe, visitors are not allowed. I can’t imagine the stress and worry that puts on people. Since my brother lives in his own home, I can still visit him from a distance and make sure he is doing well. He has choice and control over his life, who he sees, and what he feels safe doing each day.
I work for Vela Canada, the organization who started Microboards for people with disabilities. The reason I work for Vela Canada is because I strongly support their mission and as you’ve read, I have firsthand experience with Microboards and the good it’s brings to my life and my brother’s life. I chose to write this because while working for Vela Canada, listening to other family’s stories, and experiencing my own story through COVID-19, I wanted to share my story and how thankful I am that my brother has the lifestyle he has because of his Microboard.
COVID-19 has challenged all of us in different ways, and it has brought forth a lot of different social issues and direct challenges for people with disabilities and their families. I’m curious to see how things evolve once life returns to “normal”.
Written by: Alexi McGreer
If you would like to share your experience during COVID-19 please email info@velacanada.org.
This on website called Vela Canada go to the link here
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