A steady drizzle fell on Erica Payne as she waited in Pittsburgh last week. It was not the best weather for an outdoor motorcade greeting. Payne had hoped to be inside, at the nearby Carpenters Training Center, to watch President Joe Biden introduce his $2 trillion infrastructure plan, but she couldn’t get in, so she went with plan B. That’s how she found herself braving the elements with a group of fellow home care workers to cheer on the President as he arrived in his stretch Cadillac.
“I just wanted to thank him for remembering us,” she said. A large part of Biden’s plan—about $400 billion—would support Medicaid coverage of long-term care outside of traditional institutional settings. The money would provide greater access to home- and community-based health care services and bolster pay and benefits for largely underpaid home care health workers.
In-home health workers include professional nurses, therapists, and personal care aides, but it also includes family members and friends.
In the U.S., about 53 million adults act as informal caregivers, assisting spouses, partners, and family members who have fallen ill or suffer from chronic ailments. Nearly 32% of all employees have at one point voluntarily left a job during their career because of caregiving responsibilities, according to a Harvard Business School study. A majority of those who leave their jobs are women, particularly immigrants and women of color—groups that have also been disproportionately burdened by the economic impact of the COVID-19 pandemic.
The latest data shows that unpaid home care workers gave 34 billion hours of care—worth $470 billion—to their families and friends in 2017. That number will only increase as America hurdles into the silver tsunami, when baby boomers reach their senior years and longevity increases.
But the home care economy tends to go unseen because it’s typically unpaid or underpaid labor performed by women and minority workers. Biden’s infrastructure plan aims to make it easier for those who perform the work to get paid for it.
All 50 states currently offer some form of Medicaid services for long-term care of aging or ill Americans by their loved ones. But benefits, coverage, and eligibility differ from state to state: Some states pay family caregivers but not spouses or legal guardians; others pay family members as long as they don’t live in the same house as the care recipient. The amount of money caregivers receive depends on a Medicaid assessment of need and the average state wage for in-home care aides.
Others are able to opt into a home and community-based services program (HCBS) which provides support and oversight for caregivers while providing them with a tax-free daily stipend to ease their burden. Biden has specifically targeted these programs for expansion.
The President has said he will extend the Money Follows the Person (MFP) program, a federal Medicaid program designed to move elderly nursing home residents out of institutional care and into their own homes or into the homes of family members. The program provides states with grants to develop their own HCBS programs and provide other forms of monetary and medical support.
Biden will also encourage easier access to union membership for professional home care workers, who make an average of $12 per hour. Currently, one in six caregivers lives in poverty.
About two years ago, Payne made the decision to quit her job to become a full-time home care aide for an ailing relative. “I was working full-time and giving my attention to my employer, but my attention needed to be here at home,” she said. “So I stepped back at work to care for my family member.”
Under current law, Payne’s family did not qualify for additional services or funding, so she took on other patients in order to support herself. “I have to work two other jobs just to make ends meet,” said Payne. “We need to be able to support our families because we’re largely a group of women, and we’re largely a group of color, and we’re largely the heads of our households.”
Her story is not uncommon.
The economic effects of family caregiving often result in financial strain. A 2020 AARP study found that 18% of caregivers reported high financial strain, and 45% reported at least one financial impact as a direct result of their caregiving. Nearly a third of caregivers have stopped saving, and 23% have taken on more debt.
“Our family members must be taken care of, that’s the biggest thing,” said Payne. “The second biggest thing is that health care providers should be able to take care of our families without depending on other sources for paychecks. I don’t think that anyone would say it’s appropriate to work 40-plus hours a week and still need governmental support to live. That doesn’t make any sense.”
Celebrations, however, could be premature. Biden’s plan is just that—a plan. There is no congressional bill, and negotiations are ongoing. Anything that does emerge will likely face severe opposition by Republicans. Still, home care workers are heartened to receive acknowledgement after a decades-long fight.
“It was amazing. I’ve never seen anything like that,” said Payne after the President waved at her group from his car. “There were a ton of people there, and it was a special moment. It was a very special day.”