Thousands of people with disabilities were already on waiting lists for home-based health and personal-care services before the coronavirus pandemic arrived.
Now, the COVID-19 outbreak has made this assistance even more critical to keep people out of institutional settings where the illness has spread rapidly, advocates say.
Advocates are making a plea to Congress to boost funding for home and community-based health assistance through Medicaid so that people living with disabilities can access the help they need at home and stay out of large institutions. They also want to see wage increases for workers who provide in-home health and personal-care support.
Long-term care facilities have become dangerous breeding grounds for COVID-19 across the U.S., with many reports of outbreaks and fatalities.
“We are really seeing a shining example of why we need to have access to home and community-based services all over the country, but unfortunately it’s a flashpoint right now because of the pandemic,” said Nicole Jorwic, senior director of public policy at The Arc, which advocates for people with intellectual and developmental disabilities.
Jorwic pointed to an example of a living center in Denton, Texas for people with intellectual and developmental disabilities that had over 50 residents test positive for the coronavirus as of April 15.
Jorwic supports a proposal to provide grants through Medicaid to states so that home-health and direct-service workers receive higher compensation, people on waiting lists for home-based care can receive these services, and emergency equipment can be purchased for these workers. The proposal was included in House Speaker Nancy Pelosi’s coronavirus legislation released in March.
“That’s really the biggest thing that we know will get funding to states and to the front-line workers and to the service system that will keep people out of those dangerous congregate-care settings,” Jorwic said.
Sen. Bob Casey and Rep. Debbie Dingell included the proposal in bills to address the needs of older Americans and people living with disabilities during the coronavirus pandemic. Dingell said she is currently pushing the proposal to colleagues across the aisle and wants it included in the next coronavirus package.
“We’ve got to make sure that the states have additional new dollars so that we’re minimizing the wait list for home and community-based services,” Dingell said on Wednesday.
Dingell added that workers providing home and community services need higher wages and overtime. “Suddenly, the whole world is dependent upon people that we think are worth $15 an hour,” she said. “The whole world depends on these people, so we need to pay them more and we need to give them overtime and paid sick leave.”
Ensuring that home health aides and personal-care assistants receive better wages is a goal that many disability-rights advocates want to see included in legislation. They argue that these workers are also risking their safety by continuing their work, and retention may suffer.
"I need you to know that the biggest, most cataclysmic event that can occur in this country for people with disabilities is when the direct-care [staff] walk away and there are people with significant disabilities in homes with no one to care for them," Robert Stack, president and CEO of Community Options, Inc., wrote in an email.
The nonprofit provides services to individuals living with disabilities, including housing in 10 states. So far, 30 staff members have tested positive for COVID-19 and two residents have passed away from the disease, according to Stack.
Stack says direct-support professionals should receive double their current hourly rate, adding that this will help groups like his retain staff. He noted that the measures employees may have to take if they’re exposed to COVID-19 while working in one of the group’s houses could be physically demanding.
“That person works an eight-hour shift; they then have to go home to their own family,” he said in an interview with National Journal. “Then they’re going to have to self-isolate at home for the duration that they’re with their own family and then come back to work. ... So it’s kind of a taxing thing on people that you’re giving $15 an hour to.
“The problem is going to be maintaining staff and maintaining morale,” he said. Stack later added in an email that it was already difficult to find people to work in homes before the pandemic. “I am a canary in the coal mine,” he wrote.
There was already a growing shortage of workers who could provide health and personal-care needs to people in their homes, said Valerie Novack, a non-resident fellow at the left-leaning Center for American Progress who has worked as a disability-rights advocate.
“When I was a scheduler ... the amount of times where I had to call someone and say, 'We have no one to send you,' and that person—that meant they weren’t going to eat dinner that night,” she said.
“I remember an extremely heartbreaking woman who called me crying because she had wet herself and her aide never showed up,” Novack said. “I spent hours trying to find somebody we could send out there. It was illegal for me to go out there myself because I’m not certified. She had to sit there in her own waste all night until her aide came the next morning, and there was legally nothing I could do for her.”
Novack insisted that Congress needs to include home health care workers in proposals that seek to provide pay raises to front-line health workers. “They are out there right now risking their health and safety to make sure that their clients have what they need, and should be compensated as such,” she said.