BIRMINGHAM, Ala. (March 30, 2021)—“I can’t pay enough for this.” Clare McHugh shared her experiences in receiving long-term in-home care for her mother in a recent panel discussion from Kaiser Health News. McHugh shared how caregiver Karen Gilmore put her own life on pause when the pandemic hit in order to care for McHugh’s mother.

“Once we met [Karen], we tried to increase her hours and work with her more because it's the ineffable things she brings the job. It's the commitment, but it's also the love. My mother is a very starchy British person. She comes from a different world than Karen, and yet Karen brings out the best in her, my mother's face lights up,” said McHugh.

The panel discussion, “Unsung Heroes: The Crucial Role - and Tenuous Circumstances - of Home Care Workers During Pandemic,” was hosted by Kaiser Health News and the John A. Hartford Foundation. KHN Editor-in-Chief Elizabeth Rosenthal, who lost her mother in 2020 to possible COVID-19 infection, moderated the discussion. Rosenthal’s mother was cared for by home health aides in her Yonkers, New York, assisted living facility.

The panel included Joanne Taylor, the owner of Senior Helpers Westchester (NY), and Robert Espinoza, vice president of policy at PHI, a New York-based nonprofit group that studies and implements ways to improve eldercare and disability services both for those who receive care and those who provide it, along with McHugh and Gilmore. Participants covered not only the heroic role home health providers have played during the pandemic, but also some of the issues facing the workforce.

The pandemic hit the homecare workforce hard. KHN has a series, “Lost on the Frontlines” that tells the stories of those health care workers who lost their lives to COVID-19. The database includes 50 homecare workers, a number Rosenthal said is “almost certainly an undercount becausethese workers are rarely counted. Their voices aren't heard.”

“In terms of demographics direct care workers are overwhelmingly women about 87% of direct care workers are women. One in four is an immigrant and about 59% are people of color,” shared Espinoza. The median age for direct care workers is 43, but about one in four direct care workers is age 55 and older.

Espinoza also shared statistics on wages in homecare. The median hourly wage for direct care workers is $12. 80, and 45% of direct care workers are at or near poverty.

For Owen, coordinating care during the pandemic centered on supporting the caregivers. “One thing I am proud of its senior helpers Westchester, we do pay above minimum wage. We offered a shared cost medical plan, we have a 401k plan, and we do offer some paid time off,” she said.

“After the lockdown we gave people letters so that they wouldn't be stopped by the police and harassed. And they did what they had to do and they kept moving. We focused on three key areas, supporting our caregivers was number one safely delivering services number two, and continuing to market our services so that people knew we were out there.”

Supporting caregivers meant respecting their decision not to work, said Owen. If a caregiver wasn’t comfortable working, they were not removed from the Senior Helpers team. But the agency did provide paid sick and quarantine time, and a percentage of pay to delay unemployment decisions. Personal protective equipment was provided from the corporate office, which dipped into the pulled marketing funds to source and buy equipment. 

The agency currently carries around a 50% vaccination rate, a level Owen said they were proud of. Caregivers working in senior care facilities have stepped up to receive the vaccine, since many of those locations are requiring it for entry. The agency is continuing to address vaccine concerns with its staff.

For many families, paying for homecare can mean “spending down” wealth in order to qualify for Medicaid, which covers personal care visits (Medicare does not, but does cover home health). Rosenthal shared that even her “relatively wealthy” family struggled to pay for her mother’s care after long-term insurance policies failed to cover the cost. 

“I think it's time for us—and we're seeing this in states around the country—to really think about a social insurance program in long term care,” said Espinoza. “Washington State passed a state-based social insurance program that helps consumers pay for long-term care. Obviously with a certain percentage and with some limits there, but this would go a long way to helping middle income people—people who aren't wealthy—actually afford those costs.”

Rosenthal closed the session by asking Gilmore, who has worked in personal care for almost 30 years, what she would like to see change.

“We need to be paid more,” the caregiver said. “Lord knows I’ve been doing this for years without enough pay.” But she said she continues because she loves what she does.

Register for the archived event here.