RALEIGH, N.C. — The coronavirus pandemic has forced hard choices on people with disabilities who live independently with the help of workers who come into their homes.

Social distancing isn’t an option. Workers, called direct support professionals, have duties that can include lifting clients into wheelchairs, making their meals and helping them dress, along with keeping them connected to the world outside their homes. Medicaid, the government insurance program, pays for in-home services for thousands of people with disabilities.

“People with disabilities generally experience greater risk because they are more likely to rely on other people to meet their basic needs,” said Corye Dunn, director of public policy at Disability Rights North Carolina.

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With the spread of the highly infectious coronavirus, some people who were living independently have returned to live with family members. Others continue to receive in-home services, but the coronavirus has made them and their support workers cautious.

“It’s kind of nerve-wracking to hear all the stuff about social distance because you can’t be a personal care attendant if you have to keep six feet away,” Bryan Dooley, 29, said through an interpreter. “That did make me nervous.”

Dooley, who lives in Lewisville in Forsyth County, has cerebral palsy and uses a wheelchair. He receives services through a Medicaid program called the Innovations Waiver, which is designed to keep people with disabilities out of institutions. About 13,140 people in North Carolina use the Innovations Waiver, according to the state Department of Health and Human Services.

Dooley is a member of the North Carolina Council on Developmental Disabilities and a member of the Disability Rights North Carolina board of directors.

Assistant developed a fever

Dooley said one of his assistants took off work because he had a low-grade fever and was afraid of spreading any infection. Another had a second-degree exposure to the coronavirus, Dooley said. “Rather than take a chance, he decided to stay home.” Dooley said family members have stepped in when his support workers had to stay away.

“I’m very reliant on family and fortunately they have training,” Dooley said. “Not all people have that. It’s a very tough situation.”

In-home services for people with disabilities have declined since the pandemic, but no one knows how much. DHHS does not have updated claims information.

Kody Kinsley is deputy secretary for behavioral health and intellectual and developmental disabilities at DHHS. Kinsley said he’s heard of cases where a family has decided to self-isolate and suspend services, and other cases where the support personnel decided that going to work was too great a risk.

DHHS schedules weekly call-ins where people with disabilities and their family members ask questions of staff and get new rules explained. DHHS also hosts regular webinars for service providers.

The federal government allowed the state to temporarily relax some of its rules on paying family members when they provide care and making retainer payments to agencies.

“We tried to bring forward every single flexibility we could,” Kinsley said.

DHHS issued guidance, but without supplies

DHHS issued guidance for people providing in-home care that includes bringing hand sanitizer to customers’ homes, and wearing gloves, masks, gowns and eye protection when working with people who have a respiratory illness.

Many of those items are in short supply.

“I can’t buy sanitizer,” said Jennifer Pfaltzgraff, executive director of The Arc of the Triangle. “I can’t buy face masks.”

Pfaltzgraff said face masks are going to be a new line item in the agency’s next budget. She’s also going to beef up the first-aid kits with alcohol wipes and hand sanitizer when those items become available.

The concern that they don’t have enough protection may be keeping some in-home workers away from their jobs.

“I’m hearing anecdotally that people don’t want to come to work — they’re afraid to come to work,” said Sarah Pfau, a consultant for the NC Providers Council who is the senior policy and regulatory affairs specialist at Cansler Collaborative Resources. “Part of that is a dearth of PPE.”

The lack of personal protection equipment is a reason some families decided to suspend in-home services, said Dunn of Disability Rights North Carolina.

“I think the guidance is clear we should be using PPE and we still don’t have it,” Dunn said. “This is inherently close work and it’s life-saving work,” she said. “We should be treating these workers like the professionals and the essential workers that they are.”

Make your own plan’

Betsy MacMichael, executive director of First in Families of North Carolina, said her daughter Janie Desmond, who uses a wheelchair, has a visual impairment and a mild intellectual disability, is remaining in the apartment she shares with a roommate who also has disabilities but receives no services.

First in Families is a state-funded nonprofit that helps people with developmental disabilities or traumatic brain injuries get equipment or other services they can’t get any other way.

Her daughter’s agency is keeping workers in place and quickly finding substitutes when needed, MacMichael said.

Families using other agencies found out abruptly that their services would end, she said.

“There’s a wide range of experience I’m hearing about,” MacMichael said. “What I’ve been recommending to people who ask me is, ‘It will be great if there’s guidance, but make your own plan.'”

MacMichael has had some scares. Early on, one of her daughter’s workers went to the emergency room with a high fever.

“We immediately went over there with sanitizer mix,” MacMichael said. She asked the workers to sanitize the doorknobs and wear gloves.

Pfaltzgraff said her agency continues to provide services to about 64 percent of its pre-pandemic participants. Some of those participants are receiving in-home services, she said. The agency is also offering online services.

While some direct-care workers have decided not to work, the agency is looking for places to send people who say they do want to work, she said.

“It’s not cookie-cutter employment. We can’t just send anyone out to your house,” she said. “There are lots of pieces to the puzzle.”

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