Deep Dives

Why we need to put our nation’s caregivers first

Cheer 0
Share
Bookmark
5 min read
Anita and her mother hold Anita's daughter
Photo by Nicolas Zurcher

W hen my parents moved in with me, people would always ask me how I balanced it all—caring for them while working and raising a young daughter. I told them it wasn’t about balancing. Instead, it was about making hard choices—and sometimes, sacrifices. Would I take my mother to the doctor or go to my daughter’s soccer game? Would we spend some of our savings helping out my dad, who is living with Alzheimer’s, and put off saving for our own future plans? Balancing went out the window, but at least we managed.

But many caregivers I’ve met across the country aren’t so lucky—even managing becomes impossible when you’re already on unequal financial footing and are facing impossible choices. On top of emotional stress, providing care for a loved one who is sick, aging, or disabled costs a lot: Family caregivers spend, on average, 20 percent of their incomes on care, while some families of color and low-income families spend nearly half. The financial stresses facing low-income families, who are already 54 percent more likely to be caregiving than those with higher incomes, force them into precarious situations that cause them to fall deeper into poverty.

Supporting low-income caregiving workers—whether they’re caring as their job, for their families, or both—lifts up the people they care for, their communities, and the economy at large.
Fixing our nation’s care system means putting the needs of our nation’s caregivers first, because a system that lifts them out of cycles of economic instability will help us all. Supporting low-income caregiving workers—whether they’re caring as their job, for their families, or both—lifts up the people they care for, their communities, and the economy at large.

And yet, caregiving has historically been done by unsupported women, women of color, and immigrants for free or poverty wages—which perpetuates the idea that their work, in itself, is less valuable. Though we, as a country, would like to think that we are past systems that are rooted in a legacy of slavery and sexism, we’re still relying on $470 billion annually in free labor provided by family caregivers, 60 percent of whom are women, while care workers, who are overwhelmingly women of color and immigrants, are powering a $78 billion industry on an average salary of $15,000. This is the work that makes all other work possible by enabling those workers who are more visible in society to go out into the world every day and do their jobs. But caregivers are doing a job too, and we need a shift in values, a collective investment, and a society-wide solution to recognize and support them.
A group from Caring Across Generations holds a banner with raised fists in the air.
Photo courtesy of Caring Across Generations
Caring Across Generations grew out of the need for this solution—one that supports working caregivers so they have a choice to stay in the workforce and don’t have to risk sliding into poverty as they age, that guarantees that the care workforce has the wages and benefits they need to care for their own families, and that empowers seniors and people with disabilities to receive affordable, flexible, and compassionate care. We are a movement of caregivers and families, sharing our stories and pushing for policy and culture change to transform the way we care in this country. We are grounded in the belief that the needs of these groups shouldn’t compete—what works best to support family caregivers will also help professional caregivers, and, in turn, help those who need care.

One way we’ve sought innovative change is through our work with IDEO, a global design company. We’ve taken a human-centered approach, to help us imagine a care infrastructure that works for everyone touched by care—what we call the “Caring Majority.” Whatever solution we come up with, we know it will not be a one-size-fits-all approach. We are a diverse nation with diverse needs, and we need to create flexible options for families and individuals that fit their cultural beliefs and values. IDEO helped us develop tools, including a user interface concept, to depict how our public policy proposal, called Universal Family Care (UFC), could touch the lives of everyday Americans who need a little help.
Left: Griselda is a member of the "sandwich generation," meaning she is responsible for caring for her own children and her aging parents. Right: Caregivers in Hawaii rally to push for new legislation to provide benefits directly to family caregivers.
UFC provides for care needs at every stage of life, so you know you’re covered if a moment of crisis hits. Family caregivers will no longer have to choose between their jobs and care responsibilities, and can maintain their financial wellbeing. And with portable benefits—which untether benefits from your employer and allows you to take benefits from job to job—UFC allows caregivers in all manner of work situations, including care workers who often have multiple employers, to access the same benefits as anyone else.

To make UFC possible, we know we have to shift cultural norms around caregiving. That’s why we’re also working with Second City Works, the professional services arm of the Chicago-based comedy club, to frame caregiving as an ensemble effort, and challenging harmful gender norms through digital storytelling campaigns like #WeKnowYouCare. And public policy is starting to catch up: The state of Washington just passed legislation for the nation’s first publicly funded long-term care program, and care is showing up in 2020 presidential candidates’ platforms too.

To keep change going, though, we must all step up as members of the Caring Majority. By sharing our stories and making our voices heard, we can transform caregiving from an individual burden into a collective responsibility—the responsibility to be there for our families, but also the responsibility to lift up our society’s most vulnerable.

Posted: June 4, 2019
Edition: Data/Driven


The ideas and views reflected in this article are those of the author and do not necessarily reflect those of Evoke or Melinda Gates.