“We’re bathing people, we’re feeding people, we’re changing people,” explains Danielle Darby, the chief operating officer of RCM of Washington, one of the largest disability service providers in the District. “We’re brushing teeth.”
And they are doing all that with limited protective gear.
Darby says the D.C. Health Emergency Preparedness and Response Administration gave them about 100 masks and 30 gowns, but those didn’t last long. She has scrounged for more masks and has placed an order for a few thousand from China, but those have yet to ship. In the meantime, a staff member has sewn about 300 cloth masks. Even then, Darby said, they could use more.
“We have a lot of direct support professionals out risking their lives and we don’t have enough equipment,” she says. “N95 masks? We have none. We have a few surgical masks, and that’s it. We have a handful of gowns, and that’s it.”
The man who chose to quarantine with his client works for RCM and Darby says he has been reusing the same sets of masks and gowns, spraying them daily with Lysol.
Think about that image for moment: In the capital of one of the wealthiest countries, a man taking care of one of its most vulnerable residents is counting on a can of Lysol to keep him safe.
Across the nation, we are — rightly — applauding health-care workers nightly, but many people have no idea what that man and his colleagues do daily. They work in one of the most difficult, and hidden, health-care jobs in the country. And it is one that has landed them, too, on the front lines of this pandemic.
They can’t practice social distancing because they have to go into apartments and houses each day to help people with intellectual and developmental disabilities with daily tasks. Some of the people they support can’t talk. Some can’t walk. Most can’t flip open a laptop, look up the safest hours to go grocery shopping and pick up what they need on their own.
They need these workers to help them do all of that, and the agencies that employ them are worried right now that, without more resources, they will start to lose staff members, even as the need for them grows.
“I don’t feel people know who we are and what we do, and this crisis has just magnified it 100 percent,” says Patricia Browne, the chief executive of the National Children’s Center, which provides support services for nearly 100 people with intellectual and developmental disabilities in the city. “I feel we are in a war zone and nobody knows we are there. That’s a little bit of an exaggeration, but that’s kind of what it feels like.”
At least 49 people with intellectual and developmental disabilities have tested positive in the city, says Ian Paregol, the executive director of the DC Coalition of Disability Service Providers, which represents about 50 providers.
Of those people, at least six are believed to have died. Others have been hospitalized. And some remain in their homes, receiving services.
“The general feeling among the providers in the coalition is worry and disconnect,” Paregol says. “I think they’re really scared about what’s going to happen to the people they support and their staff.”
On March 4, he sent a letter to D.C.’s Department on Disability Services, Department of Health, and the deputy mayor for health and human services to encourage them to get ahead of the challenges a local outbreak might bring for people in this community. His letter describes that population as “the very DC citizens who will require a proactive comprehensive governmental approach for the foreseeable outbreak.”
Paregol says he sent another letter on March 12, and another after that.
He describes city officials as not being quick to offer guidance to service providers who have had to restructure their staffing to make up for shuttered day programs, spend more money for overtime and hazard pay — without knowing whether they will be reimbursed — and find protective equipment.
“It’s almost as if the District is not making their most vulnerable a priority,” Paregol says. “This population has been an afterthought.”
He is not alone in that concern. Letters have also been emailed to city officials from people with disabilities and advocates for them, raising concerns about the community’s needs during the pandemic.
One sent to Mayor Muriel E. Bowser (D) and the D.C. Council from Bob Williams, a disability activist, had this subject line: “WhyWeCantWait — Five Actions You Elected Officials Must Take Now to Blunt the Effects of COVID19 on People with Significant Disabilities of All Ages who Need Home and Community Services and Supports to #LiveAsEquals in #DC.”
Another letter sent to the mayor and council came from Disability Rights DC at University Legal Services, the federally designated protection and advocacy agency for residents in the District. It was signed by 22 other organizations.
Andrew Reese, the director of D.C.’s Department on Disability Services, says he and other officials have weekly phone calls with community members and service providers. He also points to other measures the department has taken. He says a quality resource specialist checks in with providers weekly to gather information about their supplies. The department has also put in a request with the appropriate federal agency to get approval for measures that would help staffing needs, including retroactively covering additional pay for staff members who work overtime or with people who test positive for the virus.
He says he can appreciate how for disability service providers working on the ground “help is not going to feel like it comes quickly enough.”
But the department, he says, is working to provide them help “as quickly as possible.”
“They are doing a tremendous job and we are doing everything we can to support them in that job,” he says.
Marisa Brown, the former director of Georgetown University’s DDA Health Initiative, which the city defunded last year, says she has been contacted by service providers looking for guidance. She has heard them express frustrations over the lack of protective equipment and uncertainty in the face of new situations that are arising as more people in the community test positive.
City officials could and should be doing more to address the concerns of providers, she says.
“We are in this for the long haul until there is a vaccine,” she says. “It may be a little late and dollar short but it’s not too late, and this is definitely the time to respond and respond in a proper way.”
David Carrington, the chief executive of Innovative Life Solutions, says three people the group supports have tested positive so far for the virus. One of those people, a man in his early 50s, died Monday.
“I had the pleasure of knowing him for many, many years,” Carrington says. “He was a big Redskins fan. He was a beautiful person.”
Carrington says he would like to see more protective equipment and testing made available for direct support staff to protect both them and the people they work with. He describes seeing some staff members who are hesitant to come to work, despite the agency now providing hazard pay for those working in homes where there have been confirmed covid-19 cases.
The worker who is quarantining with the man who tested positive is earning $4 more an hour. Darby says the organization also has increased the pay for people who don’t work with people who have tested positive. Even so, her agency has lost about 18 staff members. They have also seen at least six clients test positive for the virus.
Four of those results came back on Tuesday, leaving Darby wondering how she was going to provide staff to those homes.
“Do I have enough staff for this evening and tomorrow and onward?” she said when I spoke to her that afternoon. “And then the fear is, what if the staff gets sick? Then what do I do?”
When I called her, she was in her car, driving to pick up supplies and check on staff members through doors. She is trying to avoid getting sick, but not just for her own sake.
“I feel I have to stay healthy in case I need to provide direct care,” she said.
She hasn’t done that for decades. But she is now prepared for that possibility.
Read more from Theresa Vargas: