Frontline Initiative: DSPs Respond to COVID-19

Karlene French has worked in direct support for over 20 years, but the majority of that time she has been a manager. Karlene grew up in Jamaica, where people with disabilities didn’t always have the chance to go to school or live in the community. She was instantly interested when she learned about direct support. “I look at the people I support as, okay, I’m responsible for trying to get to know someone and build a relationship with them and understand how they feel and their needs and their wants.” This can be complicated because many people who Karlene supports do not communicate with words.

For almost 4 years, Karlene has been a manager in Jewish Association for Developmental Disabilities's (J-ADD) Fisher Home. “I like to lead. I’m that kind of take-charge person,” she says. But, like many managers, she does a lot of work as a direct support professional (DSP). “I go back and forth,” she explained, “because your job is never done. Even when you are a manager, you are still direct support staff.” But she loves this work. She remembers an administrator at the first home and community-based services organization where she worked who shared a philosophy of work that continues to impact her.

If you have to get up in the morning to come to work and ask yourself, ‘Why am I here?’ you really don’t need to be there. And you can ask me, ‘Why do you come to work every day with a smile on your face?’ And I’ll tell you, ‘When I walk through these doors, a person I support will say, ‘Good morning, I love you, I miss you.’ And when you hear those words, who wouldn’t want to come to work? In the home that I run, we work as a family and as a team.

COVID-19 impacts the Fisher Home

The seriousness of the COVID-19 pandemic hit the Fisher Home right away in March of 2020. Karlene explained:

In the beginning, we hear about this thing on the news called COVID-19. We don’t know what COVID-19 is. We just know that it is bad. When it started, I thought about Janine, an assistant manager who also worked in Fisher Home. She was someone that I’ve known for over 30 years. She’s also my younger daughter’s godmom, and so we talked about it. And I know that she had a major underlying sickness. I was worried because she was the person that went out to do shopping and pick up people. She’s younger than me but because of her underlying sickness, I took on the responsibility of doing these jobs so she would stay in the home. Incidentally, she ended up getting COVID-19. Don’t know how, don’t know where, but COVID-19 left a mark.

Before she knew she had COVID-19, Janine came into work late. She relieved Karlene at work apologizing, “I’m so sorry. I just woke up. I don’t know what it is, but I’m so tired.” Karlene saw her again at work the next day. Karlene told her, “You don’t look good.” Janine said it must be the Lysol spray. Karlene explained, “’Cause we, at this point, we doing our spraying, wiping down, washing hands. We were taking precautions and she said the spray got in her throat and give her a cough.”

That night Janine called Karlene saying she went to urgent care and was diagnosed with pneumonia. She called her cardiologist and he told her to check into the hospital in two days if she wasn’t feeling better, which she did. She spent a couple days in hospital, and they sent her home.

“That weekend I spoke to her,” Karlene recalled. “Then on Friday, I came to work. I actually was by myself because I had no staff, and that’s when I got the call that she passed away.” It was the same day that one of the people Karlene supports went into hospital, and another staff member went to hospital and tested positive. “It leaves a mark, because I actually watched something take a person’s life that was very close to me,” Karlene said.

Karlene was devastated. She went home and worked from home for several days. But she felt she had deserted her staff, so she came back to work. Several other staff members who worked in the home had underlying conditions that were concerning. “At the time,” she said, “I sent them home and told them not to come back until we had things under control.”

The people supported had difficulties understanding what was happening. It was hard for them when staff were coming and going and there was talk of death. Karlene recalls that one woman she supports was so worried. The woman knew somebody passed away, but she hadn’t understood who it was. That day was Karlene’s day off. Karlene got a call from one of the DSPs saying that the woman at Fisher Home was not herself. The woman had misunderstood and thought Karlene had passed away because she was not at work. The DSP put Karlene on the phone to speak with her. Karlene said, “those are words and memories that you live with for the rest of your life.”

Thankfully, the man Karlene supports recovered from COVID-19 after three weeks in hospital. But he has lasting mobility challenges and could no longer climb stairs at the home even after he recovered. He moved to a new home. None of the others who lived at Fisher Home got COVID-19. However, Karlene and almost the entire staff at Fisher Home got COVID-19. Karlene recalls, “Another of my staff went out. Until today, she has not fully recovered. It messed her heart up. She was out for two months with COVID. That’s why, when I talk to people, I let them know if you talk nonsense to me about COVID-19, I don’t want to hear it. COVID-19 is not a joke. COVID-19 is something serious.”

Taking responsibility

Karlene always believed that strong leaders lead by example. “My thing is, don’t ask someone to do what you will not do. That’s always my stand. Suppose [someone I support] had an accident and needs a shower. If I, as a manager, am not willing to roll my sleeves up and partake, how can I expect my staff to do it? An effective manager has to be an effective leader. There shouldn’t be anything that you as a manager refuse to do, but expect your staff to do. I can’t have a double standard. Lead by example.” After all they had been through with COVID-19, she knew that she needed to set a standard in the home.

They had been cleaning and wearing masks at work. Many of the people she supports were uncomfortable wearing masks. But it was important for her to wear a mask and require it of the other staff. When vaccinations became available, Karlene and two other staff members were first in line to get one. Thinking of Janine, the staff, and the people she supports, Karlene said, “If we can take this vaccination and save one life or ten lives, it is something that we do for her. We know what tragedy is and we’re trying not to lose anyone else to this disease.” When they were vaccinated, Karlene and the two other staff members got information to bring it back to other staff. But when they brought it back to others in the home, Karlene pleasantly realized that the other staff knew that getting vaccinated was the right thing to do. “At that point, they just wanted to protect themselves and who they were working with. They had seen what could happen without the kind of protection and immunity from the vaccine. They were ready to do it. It didn’t take much convincing.”

If we can take this vaccination and save one life or ten lives, it is something that we do for Janine. We know what tragedy is and we’re trying not to lose anyone else to this disease.

The Fisher Home that Karlene manages was the first home in the organization where all staff were vaccinated. Now the organization requires all staff to be vaccinated against COVID-19. Prior to that, Karlene was upfront with new hires about the importance of being vaccinated:

They know from the get-go. That was one of the questions I asked when I interviewed candidates to work in the home. I said that COVID-19 has impacted us a lot. The people I work with… we watched someone almost pass away from COVID-19 and we lost a staff member. We, the staff, have a responsibility to them because we go home, we go outside, we interact with people. Is it fair for you to bring something from the outside, into these people’s home? So, I would love to have you working for me, but to be honest with you, I have to put the needs of the people who work here first, and I need you to take all reasonable precautions. If you are not willing to take a vaccine to protect yourself and protect the people you work with, then this is not the home for you.

For some time, this meant more work hours for Karlene because the home was short staffed. But she said, “I was the manager, I didn’t care. For my staff here, we don’t work with people that’s not vaccinated.” For Karlene, the safety of Fisher House is just too important to not take all precautions.