Just a few months ago, LuAnn Cooper and her client Margie went on lots of outings together — exercising at the gym, grocery shopping, getting ice cream.
But the pandemic put a stop to those trips.
Margie, who has a developmental disability, hasn’t been able to leave her home in Washington, Missouri, since March.
Lately, she and Cooper have found a new way to pass the time: birdwatching.
“That’s kind of like a hobby for me now,” said Margie (we’re not using her last name to protect her privacy). The songbirds that visit her feeder, she added, are “just beautiful.”
People with intellectual and developmental disabilities often rely on in-home caregivers for help with daily tasks, including budgeting and preparing meals. These workers, known as direct support professionals, have become even more important while clients are isolated at home. But some say the pandemic is putting pressure on an already-fragile industry, weakened by low wages and high employee turnover.
Cooper began working as a direct support professional about two years ago, after a friend recommended she apply for a job with Emmaus, a faith-based nonprofit that coordinates care for adults with developmental disabilities in eastern Missouri.
“I had been a secretary my whole life,” said Cooper, who has multiple sclerosis. “But my hands were starting to go numb and my vision was getting worse, so I said, ‘I need something different that doesn’t require a lot of typing.’”
She now helps care for seven adults with disabilities in two separate homes — cooking meals, cleaning, administering medication and bathing. Normally, she said, there should be at least two workers on duty per shift, but due to a staff shortage, she often works alone.
Juggling the care of three to four adults can quickly become a “running around kind of situation,” Cooper said.
“The challenge is when one in a wheelchair says, ‘I gotta go to the bathroom.’ Well, I have to totally help her, but I've got one that’s got to be in the shower,” Cooper explained. “I can't be in both places at one time.”
Emmaus employs more than 500 direct support professionals across the St. Louis region, said Cindy Clark, president and CEO, but they’re still about 200 workers short.
Before the pandemic, if someone called in sick or went on vacation, the nonprofit could shift workers among households. But that strategy has become too risky, Clark said, because it could expose more workers and residents to the virus.
“We want to have fewer people working in a home, despite what that might cost us in overtime,” Clark said, adding that some may have to work “extraordinary amounts” of overtime in homes that are short-staffed.
Emmaus has also instituted new safety procedures, including limiting visitors and regular temperature checks. Still, six workers have tested positive for the coronavirus in recent weeks, further exacerbating the staff shortage.
Even with record unemployment levels, organizations that serve people with intellectual and developmental disabilities in Missouri have struggled to recruit new workers.
Because most direct support professional jobs are funded through Medicaid, worker pay largely depends on state funding. In Missouri, workers make about $10 an hour on average, compared to about $12 an hour nationwide.
Low wages can be a deterrent for applicants, said Mark Keeley, president and CEO of the St. Louis Arc, a nonprofit that supports people with developmental disabilities.
“Most individuals who are looking for work can go work anyplace and make $15 an hour at Pizza Hut or Target — those jobs that are not required to help people with bathing, grooming and dressing,” Keeley said. “It's really hard to recruit staff that are committed to providing that level of care for minimal pay.”
These challenges are symptomatic of deeper issues that have long plagued the industry, said University of Minnesota researcher Sherri Larson.
“These are people who are not making enough money to be independent of the welfare system,” said Larson, who worked as a direct support professional in the 1980s and has studied these issues for 30 years. “There has been a crisis in direct support for decades.”
Half of direct support professionals receive some form of public assistance themselves, such as housing or food benefits, and most are working two or three jobs, according to a 2017 report from the President’s Committee for People With Intellectual Disabilities.
“Most DSPs who leave the profession do so not because of the nature of the work, but because they cannot support their families on the available wages,” the authors of the report noted.
In the U.S., annual employee turnover rates, or the proportion of employees who leave the field each year, have held steady at 40%-50% since the late 1980s, Larson said.
“What that means is a group home that has 10 direct support professionals would have five new hires in a year,” Larson said. “The challenge today with COVID, is not only do we have turnover, but we have people who are out sick. So people are very stressed in terms of how many hours they’re expected to work.”
For LuAnn Cooper, working with Margie and the other residents has been a “godsend,” but financially, it can be hard to make ends meet.
“Everyone's drowning in debt,” Cooper said. “We're all living on the edge. I don't know many of them that are not living paycheck to paycheck.”
She’s been working 16-hour shifts, sometimes back to back, caring for her clients. Even when she’s off the clock, she’s still thinking about them — like, where she can find a hummingbird feeder for Margie.
But what worries her most is the idea that she might accidentally pass the virus to her residents, so much so that she’s decided to avoid going anywhere but the grocery store.
“I worry about them,” Cooper said. “I could get sick and bring it to them and not even know it. The other ladies I work with, we’ve all talked about [how] we really limit our own lives.”
Her residents are her family, she said, and family sticks together.
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