President Joe Biden proposed $400 billion in home care aid. Health workers say it can't come soon enough.
When Engracia Figueroa was 22, she fainted inside a train station and fell onto the tracks and remained stuck there for about 15 minutes. Three train cars ran over her, she said, throwing her body 50 feet from one leg and breaking her neck in several places.
"The first thing I heard him say: 'Oh God, is she still alive?'" she remembered of the moment she was rescued.
The accident left Figueroa needing a wheelchair and reliant on personal care assistants to go about her life. Now, 30 years since her accident, Figueroa works as a disability rights activist.
With her caregiver Christine "June" Laing, Figueroa was one of hundreds who participated in the "Care Can't Wait" day of action, a nationwide demonstration organized by the Service Employees International Union, National Domestic Workers Alliance, and several partners to press Democrats to include President Joe Biden's proposed investment in home and community care in the forthcoming infrastructure and jobs package.
"Caregiving in America has been seen and been treated as a low-end job," Figueroa said. "Caregiving needs to be seen as an industry, as a career, as a real good job, and they need to be paid equitably."
Amid loud chants of "We are essential!" health workers and advocates in Washington, D.C., marched on foot — and by wheelchair — from the U.S. Capitol to Freedom Plaza for the launch of "Communities of Care," an interactive art installation by Women's March co-creator Paola Mendoza, in which Figueroa and Laing were featured.
Though the official speakers projected optimism about the prospect of getting more funding appropriated for these causes, some activists in the crowd appeared less convinced.
"If we don't get it, shut it down," some chanted as they made their way down Pennsylvania Avenue towards the White House.
"Unseen, underpaid, and undervalued"
Tuesday's demonstrations highlight the precarious position Democrats are in: under pressure to deliver on bold promises from groups who see themselves as central to Biden's election victory, while simultaneously facing razor-thin majorities in Congress and little Republican interest in compromise.
Democrats have responded with a dual-track approach, pursuing a bipartisan deal for some measures while also pushing a bill with their other priorities — like home and community care — through budget reconciliation, a complex process that enables them to pass certain types of legislation without Republican support.
The White House initially proposed that Congress invest $400 billion toward expanding access to home- and community-based care for elderly Americans and those with disabilities. Though light on specifics, the White House said the money would fund long-term care services through Medicaid and support the ability of home health workers to unionize.
"For too long, caregivers — who are disproportionately women, and women of color, and immigrants — have been unseen, underpaid, and undervalued," Biden said in announcing his infrastructure proposal in Pittsburgh on March 31.
Republicans swiftly condemned the offer, arguing for a more traditional definition of infrastructure as just roads and bridges.
"This is about Democrats' goal of increasing government-controlled healthcare," Rep. Jason Smith (R-MO) told the Wall Street Journal in April. "It doesn't belong in an infrastructure bill. This takeover of government healthcare, they're just trying to slip it through."
But health workers and advocates reject the notion that health care should't be included in infrastructure.
"What could be more fundamental to society functioning than people being able to work and having access to good care for their families?" asked Ai-jen Poo, executive director of the National Domestic Workers Alliance.
"Some people need a bridge to get to work and some people need care to get to work. And I think even the guys who will be repairing our bridges and tunnels need care for their families," Poo added.
Late Tuesday night, Senate Democrats announced an agreement on a $3.5 trillion budget reconciliation plan. Though few details about spending priorities were immediately available, investments in home care were expected to be included in the bill.
An aide to the Senate Health, Education, and Labor Committee noted that Chair Sen. Patty Murray (D-WA) recently introduced separate legislation to benefit home care workers and said Murray was "working hard to include a historic investment in home- and community-based services in the upcoming budget resolution."
Secretary of Labor Marty Walsh, who spoke at Tuesday's demonstration, told The American Independent Foundation in a statement, "President Biden's Build Back Better agenda invests $400 billion to make high-quality care — for our elderly relatives and family members with disabilities — affordable and accessible. It's finally time to give care workers the respect, the rights, and the pay they deserve."
"I just can't live off $12.50 an hour."
The coronavirus pandemic's devastating impact on long-term care facilities and nursing homes accelerated the expansion of the already-growing home health care industry. According to some estimates, nearly 175,000 Americans have died of COVID-19 in nursing homes or long-term care facilities, accounting for over a third of all COVID-19 deaths in the U.S. as of last year.
As the pandemic ravaged large care facilities, many Americans who are elderly and those with disabilities turned to home care to receive the services they needed. Yet home care workers receive low pay and work long hours, while those receiving care often struggle to afford it.
Douglas Fewell, who cares for his aging mother in Pennsylvania, said she requires 24-hour assistance, but her insurance only covers 16 hours per day. Beyond providing the extra hours of care for free, he highlighted inequities between pay for home care providers and those in larger facilities.
"I'm at home making $11.47 an hour," Fewell noted, "yet if I decide to get my mom to a facility, the same people that pay me $11.47 an hour will pay that facility $25 an hour."
Most older Americans and those with severe disabilities receive their health insurance via Medicare, but the program does not cover 24-hour care or nonmedical support like cleaning, bathing, or dressing.
Medicaid, the federal and state health program for Americans in low-income households, provides more coverage, but due to strict eligibility standards only the poorest individuals qualify, leaving those who are not eligible for Medicaid but can't afford care on their without coverage.
Gemma Calinda, who was diagnosed with multiple sclerosis in her teens, is mostly in good health but has required assistance with dressing and cooking for the past 10 years.
Calinda initially received a grant to help with home care expenses, she explained, but that only covered care for six hours a week.
"All the other time that I needed, I had to pay," Calinda said. "I emptied out my 401(k), you know, but I needed the care."
Nineteen-year-old Brianna Jocelyn works for minimum wage as Calinda's home care aid in upstate New York.
"I'm going to college; I'm working to make more money," Jocelyn said. "I just can't live off $12.50 an hour."
"Something is gonna happen, something positive."
Though advocates were split on what specifically Congress should do to support home care workers and recipients beside raising wages, everyone agreed that momentum for change was growing.
"People have been, you know, pushing for this silently, but now —" Precious Aroh, a home care worker from Houston, trailed off.
"They need to listen," Aroh continued, adding that she's "very, very optimistic something is gonna happen, something positive."
Jennifer Bell echoed Aroh's sentiments. She and her sister Janelle, who uses a wheelchair and has needed home care for the past 14 years, traveled to Washington from Pittsburgh to join Tuesday's demonstration.
"A couple years ago I thought we were in this fight alone, and you just feel so alone when there's nobody out there listening to you," Bell said.
"And then now to see this and see the union coming together and everybody wanting to come together ... it's amazing."
Published with permission of The American Independent Foundation.