Chandra Campos works as a caregiver in San Luis Valley, a picturesque part of south-central Colorado punctuated by the Rio Grande River, whose headwaters lay just north. Caregivers in that part of the state are in short supply – meaning Chandra has lots of work helping clients dress themselves, bathe, and making sure they get enough to eat – the things that enable people to live independently at home instead of in long-term care facilities. 

It is also means lots of mileage for Chandra as she drives from client to client in this rural section of Colorado. During her eight years as a caregiver, Chandra has gone through three cars due to wear and tear. She says because of the low wages caregivers earn, in addition to the fact that she does not get reimbursed for mileage, it is difficult to save up enough money for a good car that will last. 

“While I was lucky to keep my job during the pandemic, it meant I was putting my family and my health at risk each day,” she says. “I was forced to make the impossible choice of going to work or risking being unable to pay my bills.” 

Chandra told her story in an op-ed published by the Colorado Sun, which serves the San Luis Valley.  As a member of Colorado Care Workers Unite, she wrote the op-ed in support of the Better Care, Better Jobs Act currently pending in Congress. This proposal – which reflects a key part of President Biden’s American Jobs Plan and is included in budget blueprints passed by both the Senate and House — would directly invest $400 billion in essential care infrastructure, in part by paying caregivers a decent wage. It would create middle-class jobs and it would give workers the right to join a union, meaning they could negotiate better, safer working conditions. 

Under the legislation, states would receive additional Medicaid funding for taking steps to improve the access to and quality of home-based care, increase the wages and benefits of caregivers, improve training standards, and provide relief to unpaid family caregivers.  Advocates are now working to ensure that the $400 billion is included in the detailed legislation that follows up on the budget roadmap Congress just passed. 

Peter Berns, Chief Executive Officer of The Arc of the United States, said the proposal in particular would help people with disabilities as well as aging adults. 

“The infrastructure of care for these groups currently includes the labor of unpaid family caregivers who fill in the gaps in the service system, and a paid workforce that is not paid a family sustaining wage,” he said in a statement. “The $400 billion included to both expand access to HCBS and raise wages for the direct care workforce will shore up the care infrastructure so that people with disabilities can live independently, aging adults can age in place, and family caregivers can return to the workforce.” 

Advocates for caregivers, including SEIU, hope to see the $400 billion included in the final version of the budget expected to pass Congress this fall, and are lobbying to make this happen. SEIU currently is waging an aggressive digital campaign on caregivers’ behalf. 

Such an investment would transform an industry largely made up of women, particularly women of color. There are around 4.6 million paid caregivers in the United States, with most working as health care aides, personal aides and nursing assistants. About half of this work force are women of color; about one-fourth were born outside the United States. 

As Americans age, the demand for caregivers is only going to increase – which means pay will have to increase in order to attract people to the millions of jobs that will need to be filled. Currently home health and personal care aides such as Chandra earn an average wage of $13.49 an hour. And there is an entirely separate, invisible work force of tens of millions of people who provide caregiving services for loved ones without compensation. 

It is clear that if we are to transform our economy – or, as President Biden says, “build back better” — then addressing caregiving must be part of the equation. 

“We can’t have a strong economy if we have millions of people working as full-time caregivers and making so little that they are still living in poverty,” Secretary of Commerce Gina Raimondo told the New York Times. “We can’t have a strong economy when we have millions of other people dropping out of the work force to take care of elderly loved ones.” 

Experts say that the low level of compensation inside the caregiving industry exists for three reasons – first, the impression that many Americans have that home care is not a “real” profession; second, the demographics of the industry itself; and third, who pays. 

“The notion of the home as a workplace is an oxymoron to people – it doesn’t make sense to them,’ Eileen Boris, a professor of feminist studies at the University of California at Santa Barbara told The Lily. “What we do in the home is associated with love, not money. Then there’s a double devaluing, because it’s work that’s associated with the legacies of slavery and Jim Crow and discrimination [against] immigrants in the low-wage labor market.” 

While the large number of families dependent on home care for family members either aging or with disabilities recognizes how essential this work is, public or insurance payments for home care are inadequate to meet the need, and families who need home care often are on their own trying to pay for it. Most find it a struggle to cover the costs, putting more downward pressure on wages for home care workers. 

And since the onset of the pandemic, things only have gotten worse. 

“I think it’s impossible to overstate how challenging the last 18 months has been for this workforce,” Kezia Scales, Director of Policy Research at the direct-care nonprofit PHI, told The Lily. “In many cases, they were making the almost impossible choice to continue doing their job while putting themselves and their families at risk – while also being responsible for the lives of their clients – or staying home and forgoing their paycheck. Since many of these workers are earning poverty-level wages, they’re not in a position to do that.” 

Back in San Luis Valley, Chandra Campos agrees. 

“The way I see it, caregivers would be better at our jobs, and more people would want to do this work, if we were paid a liveable wage and had benefits such as paid time off, sick leave, and health care,” she wrote. “It can be hard to take care of others when you can barely take care of yourself.”