PITTSBURGH — Edward Monk’s job was tough — even before a global pandemic hit.

Monk is a caregiver for two men with Down syndrome in a residential home.

As a direct support professional, he assists those he cares for with tasks like grooming, preparing meals, administering medications and generally helping the men he cares for live in their Mt. Lebanon group home and be part of the community.

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Like everyone else, their routines have been upended by stay-at-home orders and social distancing.

For the clients Monk cares for, not being able to go to their jobs has been particularly difficult, he said in a phone interview.

“One of the guys asks me every day if he gets to go back to work. … It’s hard to explain, I don’t even have an answer for when that is even possible. I just have to keep reassuring him that someday, his work will come back up.”

Agencies that serve individuals with disabilities are facing numerous challenges — both in terms of trying to stop the spread of COVID-19 and keep their residents and staff safe — as well as dealing with the emotional hardships of lost routines and being unable to see family in-person, said Carol Ferenz, director of the IDD division at the Rehabilitation and Community Providers Association, a statewide group representing health and human service providers.

Furthermore, the pandemic is straining what was an already-stressed system of workers and mainly non-profit providers — direct support professionals typically earn low wages and have high job turnover, leading to a number of pre-pandemic vacancies. Providers can’t raise wages without additional reimbursement from the state’s Medicaid program.

Many programs have been paying higher wages and additional overtime because they were under the impression the state would be paying higher rates, though it is unclear if that will happen now. They also have the increased costs of obtaining cleaning products and personal protective equipment supplies, said Mark Davis, president and CEO of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability.

“Our community is really at risk of just being decimated. … We were just not in any kind of position to absorb this,” he said. Providers are hoping for additional funds from the state to cover their costs, he said.

State human service officials say they’re aware the situation has stretched providers — though the state is financially strapped as well.

“We realize the financial strain that the COVID-19 pandemic has placed upon providers. Over the past several weeks, DHS has been collecting data from providers on the impact of COVID-19 in an effort to develop plans that will stabilize the provider community and ensure they are able to serve participants once the pandemic is over,” said Erin James, a spokeswoman for the state’s Department of Human Services.

State officials have said they are expecting a budget shortfall in the billions of dollars due to the loss of sales tax and payroll tax revenues. Under the recently-passed federal CARES Act, the state is expecting to receive about $2.7 billion.

“The Governor’s Office will be working closely with the legislature to determine the most appropriate way to distribute these funds to assist providers with their financial needs,” said James.

In the meantime, however, agencies say they have urgent needs now.

Obtaining protective surgical and N95 masks has been especially difficult for many agencies, Ferenz said.

While not considered medical staff, many direct support professionals might be assisting their clients with eating, bathing or other intimate, hands-on care.

“You can’t keep a social distance when you are assisting someone eating or bathing. You’re doing personal care with a number of people,” said Ferenz.

State guidelines to providers have emphasized hygiene and cleaning, reporting all suspected or confirmed COVID-19 cases and have given guidance on infection control best practices.

“We have had a heck of a time (obtaining personal protective equipment), we are really worried about it,” said Davis. Among the items needed by his members: N95 masks, gowns, toilet paper, cleaning wipes and large bottles of hand sanitizer.

His concern was echoed by Karen Jacobsen, CEO of Emmaus Community of Pittsburgh, which operates 10 area group homes.

Jacobsen said her organization was lucky enough to get donations of medical supplies from the nonprofit Global Links, as well as from Allegheny County.

Faced with a hard time buying out-of-stock cleaning supplies, she resorted to asking for Clorox wipes and other supplies on a neighborhood Facebook page, which resulted in a number of donations left on her doorstep.

Not seen, not understood

While Jacobsen said much public attention has rightly focused on critical first responders and hospital workers, she is concerned that the important work of caring for individuals with disabilities is too often not seen and not understood.

“The DSP (direct support professional) workforce is rather invisible,” she said. “They will never be recognized publicly for how essential they are. They are working one person in this house, and one person in that house … every day of the year to keep people healthy, safe, well and engaged.”

“I’m not convinced that there is enough understanding of how essential these workers are,” agreed disability advocate and state Rep. Dan Miller, D-Mt. Lebanon. “Everybody knows what a firefighter does, everybody knows what a nurse does … DSPs are essential. They are life-sustaining.”

Additionally, group homes and their residents have the stay-at-home challenges many others are facing.

Most group home residents are now home for far more time during the day, as they are no longer in day programs, activities or jobs. Agencies have been filling the days with activities such as video chats with family and friends, photo contests, cooking, crafts, yard projects and more, said Ferenz.

“Routine is pretty important in most people’s lives I would say. But it can be extremely stressful for some of the individuals we work with,” to not have that routine, Monk said. “It’s hard on all of us.”

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