Frontline Initiative: DSPs Respond to COVID-19

“Responsibility. What’s your policy?” was the tag line in an ad campaign for Liberty Mutual Insurance Company from 2006 to 2010. The ad campaign was nominated for a Cleo award in 2010. The company lost to Progressive Insurance. Everyone loses advertising awards to Progressive. It’s really hard to beat a camel singing about Wednesday. Still, the ad was on heavy rotation and the line comes to my mind often when I think about navigating the COVID-19 pandemic.

I live with cerebral palsy. I need help from other people to stay alive and live where I want to live. The people who support and assist me are direct support professionals or DSPs. Many people of all ages access this type of support, and it goes by various titles.

Self-directing my supports in the pandemic

I live in Minnesota. It is a state that allows for a relatively high degree of “self -direction.” In this context, that means that I am allowed to choose to recruit, hire, train, and if need be, fire the direct support professionals who provide me the daily support I need to live independently in an apartment. Not every state offers this option. I am very grateful to have it.

For people like me who were trying to direct their own care, the COVID-19 pandemic meant making choices that in any other setting would’ve been best suited for a chief executive officer or a human resources manager.

The COVID-19 pandemic meant increased responsibility on my part and the part of my DSPs. At the start of the COVID-19 pandemic, no one was really sure what that meant. For people like me who were trying to direct their own care, that meant making choices that in any other setting would’ve been best suited for a chief executive officer or a human resources manager. Prior to the COVID-19 pandemic, I had always felt very confident in my ability to provide a safe environment for myself and my DSPs. I was not at all sure I could do that given the lack of personal protective equipment (PPE) and the lack of protocols around the COVID-19 virus.

One of the results of that was that a lot of DSPs quit out of fear for their safety or the safety of their families. Some DSPs were college students. Many of them had to quit because they had to move back home and away from the Twin Cities (Minneapolis/St. Paul) where I live.

However, some DSPs were able to continue working for me. We told each other where we had been and where we planned to go, but we couldn’t guarantee each other’s safety. At the time, the newscasts and data were making it increasingly difficult to know how to be safe. In my case, this took on a complexity that most people didn’t have to contend with.

The alternative to my staying at home would have been a group home or a nursing home. Group homes and nursing homes are congregate settings and are not safe places during a pandemic. There was literally no alternative. For many people who need in-person support to stay alive, this problem remains unsolved. This is in spite of mountains of “best practice” evidence that cites that people are healthier when they live in the community and not in institutions.

Other than not being able to guarantee safety for my DSPs, the hardest thing for me was all the COVID-19 “scares.” One particular DSP had no fewer than five close calls, although she never tested positive. It was frustrating on more levels than I have room to write about.

By March 2021, I secured vaccination for all the DSPs who worked for me. It felt really good to do that for people who risked their own health for mine.

Securing vaccines for my DSPs

In January 2021, the COVID-19 vaccine became available for healthcare workers outside of acute healthcare settings. By March 2021, I secured vaccination for all the DSPs who worked for me. It felt really good to do that for people who risked their own health for mine.

In many respects, the hallmark of a healthy relationship is reciprocity. Most people take for granted that they can provide at least some degree of that in an employee-employer relationship.I have never been able to offer reciprocity in my relationships with my caregivers because the hours are so bad, and the pay is so low. COVID-19 highlighted that reality for me. I don’t know if it did the same for my staff. I can’t figure out a good way to ask them. I remain awestruck by how much my DSPs sacrifice to support me. If the COVID-19 pandemic changed anything, it deepened my gratitude and solidified my faith in humanity to be responsible when it matters.

I am far less confident in the systems that govern the fragile programs that provide this option for me. I hope that changes come someday. For now, I rest in the knowledge that others also need those changes. We are not alone.

My favorite podcast has a mug that says, “This is terrible…Keep going.” It’s very popular. When it comes to the current DSP staffing shortage, I find the slogan to be perhaps the most appropriate verbiage on how to proceed. This is terrible… but I will keep going. I have peers who no longer can because they died waiting for appropriate supports.

Learn more about Ashley, a DSP who works for Katrina. Ashley chose to get the COVID-19 vaccine to protect herself and Katrina from getting sick with COVID-19.