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care economy
America Runs on Care Work, and I’m Tired of Pretending Otherwise
The labor that sustains human life gets pushed to the margins, while the labor that scales software gets paraded on magazine covers.
Mar 08, 2026
A few days ago, I stared at a federal bar chart on my laptop and felt my stomach drop. I started asking people a party-trick question: What’s the biggest occupation in America? Almost everyone guessed something visible: teachers, retail, fast food, office work. That’s what our culture trains us to notice.
Then I pulled up the Bureau of Labor Statistics’ (BLS) “largest occupations” data, and the answer was sitting there in plain English: Home Health and Personal Care Aides, 3,988,140 people.
I’m not reading that as an abstract statistic but something I see daily through my work in running CareYaya, a social enterprise that helps families find affordable in-home care support. I hear the voices behind those numbers every day: the exhausted daughter trying to keep her job, the older man determined to stay in his own house, the care aide who shows up anyway even when her own life is fraying.
What hit me wasn’t just the size of the workforce, but the silence with which society treats caregivers.
Care work sits at the intersection of everything America avoids looking at directly: aging, disability, dependence, death, and the truth that every “independent” adult is one accident, cancer, or dementia diagnosis away from needing help.
In a country that can’t stop talking about “the economy,” I rarely see the economy described the way it actually functions at street level. I see caregivers keeping older adults safe so that family members can work, so the bills get paid, so other industries keep humming. I see care work acting like the hidden scaffolding under everything else.
And, I see how quickly that scaffolding gets treated as disposable labor.
When I talk to families, they often whisper about their difficulties getting care support almost like they’re confessing a moral failure. “We’re trying,” they tell me, as if the need for help is some private weakness instead of a predictable part of aging or serious illness. When I talk to care aides, they talk about the stress from the care work. They talk about rushing between clients. They talk about loving the work and sometimes still not being able to make rent.
PHI’s snapshot of the direct care workforce puts numbers to what I keep hearing, that median annual earnings for direct care workers were just $25,015. I read that figure and think about what it really means in 2026 America: The largest job category in the nation is, effectively, a low-wage backbone.
I also think about who gets stuck holding the bag. Care work is still treated as “women’s work” in the cultural imagination, and that bias leaks into policy, pay, and prestige. I watch the same pattern repeat: The labor that sustains human life gets pushed to the margins, while the labor that scales software gets paraded on magazine covers.
What makes me angrier is that this isn’t a small sector we can ignore until later. The BLS projects 17% growth from 2024 to 2034 for home health and personal care aides, with about 765,800 openings each year on average. This is not a “future” problem but rather a present problem that is going to grow much worse, faster.
And yet I keep watching public conversations drift toward fantasy. I hear endless speculation about AI replacing workers, while the largest workforce in America can’t even get a stable ladder, a living wage, or basic respect. I hear investors pitch “aging tech” like it’s a consumer gadget category, while the core issue is whether a real human being can afford to do this work and stay in it.
I don’t think this is an accident, but rather, a choice embedded in our system.
Care work sits at the intersection of everything America avoids looking at directly: aging, disability, dependence, death, and the truth that every “independent” adult is one accident, cancer, or dementia diagnosis away from needing help. So we do what societies often do with uncomfortable truths. We outsource them, we underpay them, and we call them “personal responsibility.”
Even the funding structure says it all. Medicaid is the main payer of long-term services and supports in the US, and a recent Centers for Medicaid and Medicare Services brief says so plainly: “Medicaid is the largest payer for long-term services and supports (LTSS) in the United States.” I read that line and think about the whiplash families face when they confront a vast public health need paired with political rhetoric that treats caregivers and recipients like line items to be squeezed.
So when I’m asked what to do, I start with a moral stance and then I get practical.
I want a country that pays the people who keep elders safe, like they truly matter. I want Medicaid rates and payment models that stop forcing providers into churn, and stop forcing workers into poverty. I want training and advancement pathways for care workers, and I want the caregiving workforce to have real power: bargaining power, scheduling power, and dignity at work.
I also want us to stop acting surprised when the care workforce pipeline breaks. If the biggest job in America is care, then the “care crisis” isn’t a niche issue, but a core labor rights issue; a public investment issue; and an economic issue that’s as critical as housing, wages, and healthcare.
When I look back at that BLS bar chart, I don’t see a pop-quiz type question anymore. I see millions of workers holding up millions of families. I see the work that makes the rest of American life possible.
And I can’t unsee the insult of how little we talk about it.
If I want anything from readers, it’s this: I want you to say the name of the job out loud, and then demand that we build an economy that treats it as essential, because it is.
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Medicaid Cuts Put Services for Vulnerable People at Grave Risk
Medicaid doesn’t just provide healthcare. It is the single largest payer for the community-based services people with intellectual and developmental disabilities need to live, work, and thrive in our communities.
May 22, 2025
With the House passing their budget reconciliation bill with a vote of 215-214, hundreds of billions in proposed cuts to Medicaid have moved one step closer toward very real, harmful consequences, including for people with intellectual and developmental disabilities, or I/DD, whose health, safety, and quality of life depend on Medicaid.
Medicaid doesn’t just provide healthcare. It is the single largest payer for the community-based services people with I/DD need to live, work, and thrive in our communities—services that range from assistance with intimate activities of daily living and personal hygiene, to employment supports to find and maintain a job, to providing residential and in-home supports to support independent living.
If lawmakers approve the proposed cuts to Medicaid, state budgets will be unable to absorb the financial shock. Even if targeted to other groups like those made eligible for services through Medicaid expansion, programs that enable people with I/DD to meaningfully participate and thrive in our society will be the first to go. We know because home- and community-based services for people with I/DD are optional services, meaning they are some of the last services to be funded when there’s a state funding shortfall. We saw this following the Great Recession when, following cuts to federal funding, every single state made cuts to services and 36 states specifically made cuts to services for people with I/DD.
If lawmakers truly care about boosting economies, they would invest in, not divest from Medicaid, because these services actually play a critical yet often invisible role in state economies.
Divesting from Medicaid will be devastating to providers of I/DD services who are already struggling immensely due to insufficient Medicaid reimbursement rates that haven’t kept pace with inflation. As a direct result, 90% of community providers report moderate to severe staffing shortages as workers seek out higher-paying jobs in entry-level retail, convenience, and fast food industries. Without sufficient staffing, 69% of community providers report they’re unable to take new referrals for people with I/DD who need and qualify for services.
Medicaid cuts by another name in the form of increased red tape eligibility requirements or work reporting requirements also threaten people with disabilities, who may lose coverage due to barriers completing onerous reporting requirements, even if they are provided an exemption. Such requirements also threaten to further exacerbate the direct support workforce crisis, as 49% of direct care workers rely on public assistance programs themselves, and approximately one-third work part-time or with inconsistent schedules—two job features that are generally incompatible with work reporting requirements. If direct support professionals, the very backbone of disability services, are unable to meet burdensome reporting requirements, it will only force them to find more stable, higher-paying jobs outside of care work.
If lawmakers truly care about boosting economies, they would invest in, not divest from Medicaid, because these services actually play a critical yet often invisible role in state economies.
New York State’s $6.7 billion investment in home- and community-based services generated $14.3 billion in economic activity, while Maine is estimated to have lost out on over $1 billion due to its shortage of direct care workers. That’s because Medicaid-funded services create jobs, while enabling the family members and caregivers of people with I/DD to remain in the workforce too. Without services, families are also more likely to need public assistance.
The House’s budget proposal will force unthinkable decisions on states and providers. It will undoubtedly lead to people with I/DD losing access to services, potentially being forced to languish in their homes without the assistance they need for using the restroom, supportive hygiene, and preparing and eating meals. It will lead to people with I/DD losing their jobs without the employment supports they need to maintain their careers. And it could mean unnecessary institutionalization of people whose right to live and thrive in their communities was codified by the Americans with Disabilities Act and, later, the Supreme Court’s decision in Olmstead v. L.C.
Senators hold the opportunity to continue protecting our most vulnerable populations by rejecting any cuts to Medicaid and not putting further stress on a system already in crisis.
Update: This piece has been edited to reflect the fact that the U.S. House of Representatives passed their budget reconciliation bill on the morning of May 22, 2025.
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We Know How Bad Trump's Tax Policy Is, But Just How Good Will Harris' Be?
Harris wants to invest in the care economy and has signaled support for raising corporate tax rates, while Trump has been largely silent on care investments and signaled support for more tax cuts at the top.
Aug 25, 2024
U.S. Vice President Kamala Harris and former President Donald Trump have starkly different views on taxes and how the tax code can support families.
Harris voices strong support for families through investments in the care economy. She’s vowed to advance paid family leave, affordable childcare, care for disabled or aging family members, and healthcare. This could be funded with a better tax code.
These policies would help all of us care for our families and strengthen our communities. Investing public dollars in care could also narrow racial and gender pay gaps by boosting the pay of care workers—who are mostly women, and many of them women of color.
Strengthening care infrastructure would help us all thrive and make the economy stronger. But we need to collect sufficient revenue to support those transformational policies.
The Trump campaign has been largely silent on care investments. But his campaign has signaled support for more tax cuts at the top. Such cuts would increase inequality and reduce the availability of federal funding to strengthen the care economy.
We saw this in the 2017 tax law that former President Trump signed. It cut taxes for the wealthiest people and corporations, including cutting the effective tax rate for our largest corporations from an average 22% to an average 12.8%. It also preserved loopholes that allow some of the wealthiest corporations to avoid taxes on most—if not all—of their profits.
These tax cuts for the ultra wealthy led to huge losses in federal tax revenue and spiked the national debt, making it harder for the government to fund new investments in priorities that are important to families.
If reelected, Trump has said he wants to slash corporate taxes further—even though some billionaires pay a lower share of their income in taxes than nurses and teachers do.
By contrast, the Biden-Harris administration created a minimum corporate tax so the wealthiest corporations could no longer pay nothing, added a modest tax on stock buybacks, and funded the IRS to better collect taxes from corporations. These policies raised revenue for care investments and other priorities.
Going forward, Harris has signaled support for raising corporate tax rates, which are at historic lows, and closing loopholes.
Harris and Trump also have different priorities on taxes for families. As a senator, Harris championed a tax credit of $6,000 for married couples and $3,000 for single people in her Lift the Middle Class Act. This would have delivered 88% of its benefits to earners under $119,000.
Harris might not promote this specific plan going forward, but it suggests she’d aim to direct benefits to moderate earners instead of the wealthiest. More recently, she’s proposed expanding the Child Tax Credit and adding a $6,000 credit for families with newborns.
By contrast, the tax bill that Trump signed delivered more than half its benefits to the top 5% of households—those with incomes over $263,000. (Like Harris, Trump’s vice presidential nominee, J.D. Vance, has suggested a bigger Child Tax Credit. But Vance has also floated making people without children pay more taxes.)
Taxing the wealthiest and big corporations would support care investments and make our tax code more fair. Strengthening care infrastructure would help us all thrive and make the economy stronger. But we need to collect sufficient revenue to support those transformational policies.
There is strong public support for better care and for fairer taxes. Tax justice advocates should call on both the Harris and Trump campaigns to commit to a fairer tax system—and to use the money it would raise to invest in the childcare, elder care, and healthcare our families need.
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To Protect Landmark Victories for Disability Rights, Fund Community Care
A lack of investment in home- and community-based services and the low wages that result threaten to turn back the clock due to a severe national shortage of direct support professionals.
Jul 07, 2024
This past June 22 marked 25 years since the Supreme Court ruled in the landmark case
Olmstead v. L.C. that individuals with disabilities have the right to live in their communities and in the most integrated setting possible.
To think about it a different way, it was only 25 years ago that our nation codified its rejection of the warehousing of human beings in large, state-run institutions, isolated from their families and from opportunities to enjoy independence and autonomy.
The two plaintiffs in the Olmstead case, Lois Curtis and Elaine Wilson, cycled through numerous institutions and hospitals through their childhoods due to their disabilities before they ended up at the state-run Georgia Regional Hospital. Doctors decided both women were ready to transition to community-based treatment that would offer greater independence, but the state stopped the women from moving, confining them to the institution several years beyond what was necessary.
Olmstead and the ADA were milestones meant to ensure the civil and human rights of people with disabilities, and we must protect them against the possibility of going backward.
The lawsuit these women filed against the state declared that the unjustified isolation they suffered as the result of their disability was discrimination under Title II of the Americans with Disabilities Act of 1990 (ADA).
Like the ADA, which will celebrate its own anniversary later this month, the court’s Olmstead decision came with a promise: It is “appropriate and required” that individuals with disabilities receive the support they need to thrive in our communities.
Since these landmark human rights victories, we have made significant progress. But a quarter-century later, a lack of investment in home- and community-based services and the low wages that result threaten to turn back the clock due to a severe national shortage of direct support professionals, or DSPs, who are the backbone of the disability service delivery system.
In fact, a survey of hundreds of disability service providers across the country in 2023 found that severe staffing challenges had them facing impossible choices. More than 3 in 4 providers reported that they are no longer accepting new referrals, while 63% were forced to close programs. Meanwhile, nearly a half a million people nationally are languishing on waiting lists for services.
DSPs support people with intellectual and developmental disabilities (I/DD) to carry out activities of daily living, find and maintain employment, develop and sustain meaningful relationships, and so much more.
One of us, Doug, is a DSP whose interest in supporting others dates back to childhood. When I was 10 years old, I often babysat a little boy with Down syndrome. Even at my young age, I was aware of how his family struggled to find resources for their son, cover mounting costs, and make ends meet.
But throughout my tenure as a DSP, I’ve only seen things get worse. The people I support see skyrocketing costs for everyday essentials. Whereas I used to be able to open my wallet to help with these costs from time to time, I’m finding my own finances stretched thinner and thinner. I recently agreed to begin supporting a second person, thinking it would help me bring in more income. Instead, the additional bills mean I’m only falling farther behind.
Nevertheless, I will continue committing to this work because of the impact I know I’m having in the lives of those I support. One of the people I work with is a 65-year-old disabled trans person. When we first started working together, he experienced debilitating anxiety, had no support from family or other natural networks, and felt completely ostracized from his community. By building trust, connecting him with local support groups, and supporting him to find safe spaces, he developed the courage to come out as trans and begin his transition.
The other one of us, Barbara, leads a national association representing thousands of disability service providers like those that employ outstanding DSPs like Doug. Our entire service delivery system rests on the civil rights promises made possible through legal landmarks like Olmstead. But without increased funding for these services to improve DSP wages, more people with I/DD will struggle to find—and keep—people like Doug committed to person-centered support. And that means longer waits for services and a higher risk of unnecessary institutionalization.
Olmstead and the ADA were milestones meant to ensure the civil and human rights of people with disabilities, and we must protect them against the possibility of going backward. Both state and federal leaders have the power to do just that, but they must be willing to commit to the long-term sustainability of the DSP workforce.
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In the US, All Elders Are on Their Own
Pretty much anyone who isn’t affluent can find that old age brings economic desperation.
Sep 22, 2023
For 12 years starting in 1982, my partner and I in San Francisco joined with two friends in Seattle to produce Lesbian Contradiction: A Journal of Irreverent Feminism, or LesCon for short. We started out typing four-inch columns of text and laying out what was to become a quarterly tabloid on a homemade light table. We used melted paraffin from an electric waxer to affix strips of paper to guide sheets the size of the final pages.
Eventually, we acquired Macintosh computers, trekking to a local copy shop to pay 25 cents a page for laser-printed originals. We still had to paste them together the old-fashioned way to create our tabloid-sized pages. The finished boards would then go to a local commercial printing press where our run of 2,000 copies would be printed.
This was, of course, before ordinary people had even heard of email. Our entire editorial process was mediated through the U.S. Postal Service, with letters flying constantly between our two cities. On the upside, through 12 years and 48 issues, we only had to hold four in-person meetings.
My article was depressingly prescient about just how much this country would expect aging people to shift for themselves by the time I reached that strange period of my own life.
All of which is to say that I’m old. That fact—and recent events in the lives of several friends—have brought to mind the first article I ever published in LesCon: “Who’s Going to Run the Old Dykes’ Home?” It’s a question that’s no less pertinent today, and not just for lesbians. My worldview was more parochial back then; I naively believed that someone—the state or their families—would look out for heterosexual elders, but that we lesbians were on our own. It turns out that we—the people of this country—are all on our own.
Playing Aging Roulette
These days, my partner and I seem to be doing a lot of elder care. Actually, I’ve long been a source of tech support for the octogenarian set, beginning with my own father. (“OK, you’re sure you saved the file? Can you remember what name you gave it?”) With our aging friends, we also help out with transport to doctors’ offices, communications issues (with landlines, cell phones, and the Internet), and occasionally just relieving the loneliness of it all.
In recent months, elderly friends of ours have faced losing their housing, their spouses, their mobility, or their cognitive abilities. I find it terrifying and ache because there’s so little I can do to help them.
I shouldn’t be surprised, but I’m daily reminded that getting older can indeed be frustrating and frightening. It pains me to know that my bones are weakening, that I don’t hear as well as I used to, that my skin’s drier and wrinkling, that my once familiar face in the mirror is growing ever stranger. I’m lucky that—like my father who used to say, “After 70, it’s all maintenance”—I’ve managed to maintain a fair amount of brown hair on my head. I especially hate the way words that used to leap down my tongue in merry cadence now frequently lurk sullenly in the backwaters of my brain.
These are the people—old, disabled, permanently unemployed—who, according to the political philosopher Iris Marion Young, experience a particularly sinister form of oppression: marginalization.
In a piece about our aging political class, Robert Reich, secretary of labor for President Bill Clinton, has written charmingly about the “diminutions” that come with growing older and his own decision to stop teaching after decades of doing so. His take on anomic aphasia is similar to mine. He laments his trouble remembering people’s names, noting that “certain proper nouns have disappeared altogether. Even when rediscovered, they have a diabolical way of disappearing again.” I know what he means. For some years now, whenever I want to talk about cashew nuts, all I can initially think of is “carob.” Some devious gremlin has switched those words somewhere in the card catalog of my brain.
But even as I grieve for capacities lost and departing, I’m still not ready to come face to face with the only true alternative to aging: not some tech bro’s wet dream of eternal life, but the reality of death. I’m opposed to dying, and, had the universe consulted me, I’d have left mortality out of its design completely.
No One Else Is Going to Do It for Us
Written more than 40 years ago, parts of my piece “The Old Dykes’ Home” are flat-out embarrassing now. Getting old seemed so strange and far off before I was even 30. When I imagined being aged then, I think it was with the piercing sorrow of Paul Simon’s song “Old Friends/Bookends”:
Can you imagine us years from today
Sharing a park bench quietly?
How terribly strange to be seventy.
In other ways, my article was depressingly prescient about just how much this country would expect aging people to shift for themselves by the time I reached that strange period of my own life. Not only old dykes, but pretty much anyone who isn’t affluent, can find that old age brings economic desperation.
Yes, U.S. citizens and permanent residents over 65 can get medical attention through Medicare, but the standard program only covers 80% of your bills. Beginning in 2006, we gained access to some prescription drug coverage, but that requires sifting through an ever-changing menu of medications and the ability to predict today what meds you might need tomorrow.
Most people who live long enough will receive some monthly income from Social Security, although the amount depends in part on how much they were able to earn during their working lives. But we’re constantly staving off attacks on Social Security, including attempts to privatize it, reduce benefit amounts, or increase the age at which people can collect because Americans are living longer. That last proposal, as economist Paul Krugman has pointed out, is really another way of penalizing low-wage workers. As he wrote,
Life expectancy has indeed risen a lot for the affluent, but for the less well-paid members of the working class, it has hardly risen at all. What this means is that calling for an increase in the retirement age is, in effect, saying that janitors can’t be allowed to retire because lawyers are living longer. Not a very nice position to take.
Suppose the disabilities of age mean you can no longer safely live in your own home. Well, you’re on your own. Unless you can afford to move to some kind of assisted-living facility, you’re in real trouble. Your main alternative is to spend down most of what you own, so you qualify for the pittance that your state Medicaid program will pay a (most likely for-profit) nursing home to warehouse you until you die.
The threat of being old and unhoused is very real. A recent major study of unhoused people in California found that almost half of them are over 50 and 7% over 65. As housing costs continue to rise, we can only expect that more old people will find themselves on the street.
Back then, I wrote that, under capitalism, we could expect the “owners of wealth” to do very little for people who are no longer creating profits through their labor—or indirectly, by doing the work “to make it physically and emotionally possible for the paid laborers to go out in the world and work one more day.” Why, after all, should capital take any interest in people who are no longer a source of profit?
In retrospect, it seems clear to me that I was then inching my way toward an ethos that could free the project of caring for each other from the claws of capitalism.
These are the people—old, disabled, permanently unemployed—who, according to the political philosopher Iris Marion Young, experience a particularly sinister form of oppression: marginalization. “Marginalization,” writes Young, “is perhaps the most dangerous form of oppression. A whole category of people is expelled from useful participation in social life and thus potentially subjected to severe material deprivation and even extermination.”
There were some other missing pieces in that article. I left out the fact that it’s easier to justify low pay for the art (and science) of caregiving when most of its practitioners are women. I failed to envision caretakers organizing on their own. I never imagined that, decades later, a National Domestic Workers Alliance would arise to represent the interests of the poorly paid, disrespected workforce of immigrants and women of color who largely do the work of caring for the aged in this country.
I had just lived through an episode in which on the bus to work I suddenly fainted from pain caused by a herniated disk in my back. I found myself lying on my bed for several months recovering while living on a monthly welfare check of $185 and food stamps. Still, the lesson I drew was that the solution to caring for people with chronic disabilities was what had then worked for me: drawing on a community of volunteers, a roster of almost 30 women who took turns shopping for groceries, doing my laundry, and ferrying me to doctors’ appointments. Why couldn’t that work for everyone?
That network of support existed, however, because I belonged to a lesbian community self-consciously constructing a parallel society tucked inside the larger city of Portland, Oregon. It was packed with institutions like a women’s bookstore, a drop-in community center, a women’s mental health project, and a feminist credit union, among others. I acted with a women’s theater company and, at times, worked as a secretary at a women’s law cooperative.
In reality, though, we weren’t nearly as independent as we thought we were. Most of those institutions were staffed by women paid through the Comprehensive Education and Training Act, passed during the presidency of Richard Nixon and continued under Jimmy Carter. When Ronald Reagan and his new brand of Republicans took over in Washington in 1981, those salaries disappeared almost overnight—and with them, most of our community’s infrastructure.
So, my answer to the problem of aging then was to endorse an ethic of volunteerism rooted in specific communities, like our lesbian one. “Feminists,” I wrote, “are rightly uneasy about asking each other to perform any more unpaid work in our lives than we, and centuries of women before us, have already done.”
Nevertheless, I argued, “the truth is… no one is going to pay us to take care of each other… and we can’t afford to believe the capitalist and patriarchal lie that we are cheating each other when we ask each other—even strangers—to do that work for free.”
In retrospect, it seems clear to me that I was then inching my way toward an ethos that could free the project of caring for each other from the claws of capitalism. But I was naïve about the amount of time and energy people would be able to spare outside of their day’s labor—especially as real wages were about to stagnate and then begin to fall. I didn’t imagine a time to come when people without much money would need to work two or even three jobs just to get by. I didn’t think, as I do now, that it would be better, instead, to focus on raising the status and pay of caring work.
Even back in the 1980s, however, I recognized the limits of volunteerism. I knew that I’d been lucky during my period of temporary disability. I was an outgoing person with quite a sizeable set of acquaintances. With a reasonable levity of spirit and a dependable store of gossip, I knew then that I could make taking care of me relatively pleasant.
But I also knew that no one’s survival should depend on having a winning personality. Instead, as I wrote at the time, we needed to “develop simple, dependable structures to serve those among us who require physical care.”
How hard could that be, after all? “A file of volunteers and a rotating coordinator could do the job,” I wrote then. Here, too, I was more sadly prescient than I even realized. In recent years, the market for aging care has indeed found a way to commercialize volunteer efforts like the ones I imagined in the form of Internet-based options like Lotsa Helping Hands and Mealtrain.
On Our Own?
My point back then was that, as lesbians, we were on our own. No one was going to run the Old Dykes’ Home if we didn’t do it ourselves. (Perhaps I should have foreseen then that someone might indeed run it, if they could make money doing so!) I figured we had 10 to 15 years to develop “formal networks of support to deal with illness and disability,” because eventually each of us would need such structures. We lesbians would have to look out for ourselves because we lived then “on the edges of society.” I didn’t realize at the time that we shared those edges with so many other people.
Building volunteer structures was, I thought, just the short-term goal. The longer-term project was something much more ambitious: to build “a world in which the work of caring for each other happens not at the fringes of society, but at its heart.”
I still believe in that larger goal, and not because it’s a lovely fantasy, but because it’s a response to a fundamental reality of life. It’s a fact that human beings, like all beings, live in a web of interdependence. Every one of us is implicated, folded into that web, simultaneously depending on others, while others depend on us. The self-reliant individual is an illusion, which means that constructing societies based on that chimera is a doomed enterprise, bound in the end (just as we’ve seen) to fail so many on whom—though we may not know it—we depend.
The truth is that we have much less control than we’d like to believe over how we’ll age.
Aging really is a roulette game. My partner and I are gambling that good genes, regular exercise, a reasonable diet, and sufficient mental stimulation will keep our limbs, organs, and minds hale enough to, as they say, “age in place.” We plan to stay in the house we’ve occupied for more than 30 years, in the neighborhood where we can walk to the library and the grocery store. We don’t plan to get Parkinson’s or Alzheimer’s or congestive heart failure or (like yet another friend) take a life-changing fall down a flight of stairs. Having somehow forgotten to have children (and never wanting to burden even our hypothetical offspring in any case), we’re planning to take care of ourselves.
Talk about hubris!
The truth is that we have much less control than we’d like to believe over how we’ll age. Tomorrow, one of us could lose the disability lottery, and like so many of our friends, we could be staring at the reality of growing old in a society that treats preparation for—and survival during—old age as a matter of individual personal responsibility.
It’s time to take a more realistic approach to the fact that all of us lucky enough to live that long will become ever more dependent as we age. It’s time to face reality and place caring for one another at the heart of the human endeavor.
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We Need an IRA for Care Work
The lack of investment in the care sector not only jeopardizes economic growth but also perpetuates a disregard for the significant contributions of care workers—contributions that have gone unnoticed for far too long.
Aug 18, 2023
The pandemic spotlighted the indispensable role care workers play in upholding the health, well-being, and economic equilibrium of individuals, families, and communities. Amid widespread care center closures, millions of Americans found themselves devoid of care worker support, leading to a marked decrease in labor force participation, especially among women.
Next month, Americans may once again experience a critical gap in care services if funding from the American Rescue Plan’s childcare stabilization fund is not renewed. One year after the Inflation Reduction Act’s and CHIPS and Science Act’s extraordinary investments in clean energy and semiconductors, it’s clear that industrial policies work and that the care sector is in dire need of investment.
Presently, more than 4.8 million Americans provide care work such as childcare, eldercare, and health and disability services. When we add teachers to this equation, the number balloons to 12.2 million workers—amounting to about 7.6% of the total workforce. This care workforce endured some of the harshest working conditions during the pandemic, deepening the legacy of systemic worker exploitation in the industry.
Policymakers have not undertaken successful initiatives to enhance working conditions for care workers or to modernize the sector to better align with the nation’s care needs.
As a result, more than 230,000 workers have transitioned from care work since February 2020. Childcare worker employment has plummeted by 101,000, and care aides and assistants have seen a reduction of 141,000 since the pandemic started. Additionally, the number of elementary and middle school teachers has dwindled by 4.4%, resulting in approximately 16,000 fewer educators.
This decline in care work employment stems largely from a decline in new entrants to the field, as younger women have opted for other industries instead. Yet, policymakers have not undertaken successful initiatives to enhance working conditions for care workers or to modernize the sector to better align with the nation’s care needs. In the absence of adequate public investments, employment in the care work sector is expected to continue its decline.
This vacuum has far-reaching economic implications, affecting labor force participation, productivity, and prices—the foundations of economic growth (Lagarde and Ostry 2018). Data shows that while prime-age women’s participation increased, the decline in labor force participation among women over 54 has offset this positive trend—dragging down the overall labor force participation rate of women.
Additionally, the dearth of healthcare support workers—nurses, psychiatric aides, occupational therapy assistants, home health aides—has overburdened existing staff, leading to burnout and high turnover. Consequently, patient care levels have suffered, culminating in adverse health outcomes. As an aging population grapples with a rise in pandemic-induced disabilities, the demand for care services is set to soar, driving up medical care expenses. The anticipated need for 2 million healthcare occupation jobs by 2031 indicates an impending surge in medical care costs that could accelerate inflation.
The lack of investment in the care sector not only jeopardizes economic growth but also perpetuates a disregard for the significant contributions of care workers—contributions that have gone unnoticed for far too long. President Joe Biden proposed investments in the care sector in 2021 as part of his Build Back Better legislative package, but those provisions were cut in negotiations with Congress over the Inflation Reduction Act.
As implementation of the IRA continues, care work still deserves to be one of the administration’s primary issues. In the absence of an industrial policy that bolsters care work, investments in various industries and the broader economy will be severely compromised, as will the economic security of care workers.
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I Love Working With People With Disabilities, But Lack of Federal Funds Makes My Job Harder
Our elected leaders need to start investing in people with disabilities and the organizations that support them.
May 26, 2023
I was teaching a class on personal finance to my students with disabilities when I read the story about the ant and the grasshopper. While the ant was busy putting food away for the winter, the grasshopper laid out to enjoy the beautiful day. Finally, when winter arrived, the ant had plenty to eat, but the grasshopper was starving.
I asked my students why the grasshopper wasn't prepared and, much to my enjoyment, one of my students responded, "He didn't have a calendar, so he didn't know winter was coming."
I work as a Direct Support Professional, or DSP, at Community Access Unlimited in New Jersey, where I provide daily care and support to people with disabilities in my community. When I'm not working as a DSP for individuals, I also serve as an Education Specialist for Community Access Unlimited's Academy for Continuing Education (ACE), teaching and inspiring adults with disabilities on a range of topics, from personal finance to the visual arts. I cherish my work. But it's not easy, and it's only getting harder.
Just like the ant and the grasshopper, Congress needs to plan for the future. That means passing home-and community-based services funding before our system completely collapses.
For decades, and even more so since the pandemic, DSPs like me have been dealing with rampant understaffing and high turnover, due in large part to the nationwide funding crisis for caregivers.
Providers like Community Access Unlimited rely on Medicaid reimbursement rates to pay their DSPs, and these rates have been stagnant for years. As a result, providers can't pay their workers living wages—the national average wage for a DSP is just $13.36 per hour—driving DSPs to companies like Target and McDonald's that have more consistent hours and don't rely on rates set by the government to pay their employees. The end result: Providers, dealing with rampant understaffing, are forced to shut down essential services or even close their doors completely.
The funding crisis holding DSP wages down is so dire that some states are considering radical solutions, like eliminating income taxes for DSPs in order to help them keep more earnings in their pockets.
Significant funding for home-and community-based services (HCBS) has been proposed to Congress numerous times. In 2021, President Joe Biden proposed $400 billion to expand Medicaid HCBS in the America Jobs Plan. In 2022, the Biden administration proposed $150 billion. Meanwhile, this April, Biden signed a groundbreaking executive order designed to strengthen the caregiving workforce in the U.S.
One side of Pennsylvania Avenue is clearly putting in the work. Yet, Congress continues to leave out or remove these crucial investments from congressional legislation.
Just like the ant and the grasshopper, Congress needs to plan for the future. That means passing HCBS funding before our system completely collapses.
Last year, 92% of providers reported struggling to achieve quality standards, according to a survey from the American Network of Community Options and Resources (ANCOR). The same survey shows that 83% of providers have been forced to turn away or stop accepting new referrals due to insufficient staffing, a 26% increase since the beginning of the pandemic.
Congress cannot wait until there are only a few disability providers left to provide services. Our elected leaders need to start investing in people with disabilities and the organizations that support them.
Earlier this year, ANCOR Foundation and United Cerebral Palsy (UCP) released their annual report, which provides a comprehensive look at the state of services for people with intellectual and developmental disabilities and the workforce that serves them. The report indicates that nearly 500,000 people with disabilities across the country remain on their state's waiting lists for services. It also notes that by 2030, demand for DSPs is projected to increase 37% over 2020 levels, with an estimated 7.9 million new job openings in the direct care industry.
Being a DSP is an incredible job. It brings me so much joy knowing that I'm helping people and making this world a better place. As a DSP, I provide daily support for people with disabilities taking them to doctor appointments, grocery shopping and more.
I also help people with disabilities engage with their communities, and oftentimes that means going above and beyond for them. For example, one of the women I support is deaf; to communicate with her, I not only enrolled in the ASL course offered by Community Access but also enrolled in ASL I, ASL II, and ASL III offered by a local community college. While I wasn't the best at sign language, I worked hard to sign with her and give her a sense of community.
I love what I do, and I can't imagine doing anything else. It's time our elected leaders recognize how essential this work is and pass Medicaid HCBS funding.
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Progressives Applaud Biden Executive Order to Expand, Improve Care Economy
"Biden has heard our calls and sees the growing power of our movement," said one advocacy group.
Apr 18, 2023
Labor unions and other progressives on Tuesday said a new slate of executive actions unveiled by U.S. President Joe Biden demonstrated the political power of caregivers and their supporters who have spent years advocating for fair wages, affordable childcare, and an extension of labor protections across the care economy.
Biden signed an order that the White House said amounts to "the most sweeping set of executive actions to improve care in history," including measures to make childcare more affordable for families, increasing pay and benefits for childcare workers, and improving supports for people who provide care for their family members.
"We applaud the administration's unprecedented executive order on care," said advocacy group Care Across Generations. "Biden has heard our calls and sees the growing power of our movement."
The White House said the executive order will direct federal agencies to take several steps to lower childcare costs for families, more than half of whom pay 20% or more of their income on care. Biden is calling on agencies to:
- Identify grant programs that can support childcare and long-term care for people working on federal projects;
- Lower costs for families who benefit from the Child Care & Development Block Grant (CCDBG) program, potentially by eliminating co-pays; and
- Review opportunities to expand access to childcare services for their employees through federal childcare centers, childcare subsidies, or contracted care for providers.
The actions would also:
- Boost access to home-based care for veterans by directing the Department of Veterans Affairs (VA) to consider piloting a new care program and adding 75 new teams to its home-based primary care program, allowing it to serve 5,600 more people;
- Direct the Health and Human Services Department (HHS) to ensure childcare providers whose clients use CCDBG receive higher reimbursements;
- Direct HHS to more strictly regulate the quality of home healthcare jobs and condition Medicaid and Medicare payments on minimum staffing and staff retention at home health agencies and nursing homes;
- Introduce a new dementia care model at HHS that would include support for short-term help that a family caregiver can retain in order to have a break and require the VA to consider expanding access to its mental health support program for family caregivers;
- Direct the Department of Labor to publish a sample employment agreement "so domestic childcare and long-term care workers and their employers can ensure both parties better understand their rights and responsibilities"; and
- Streamline the process for Indigenous tribes that receive federal childcare assistance and Head Start to construct and improve childhood facilities, allowing tribes to expand care for the "approximately half a million American Indian and Alaska Native children under the age of 13 who potentially need child care so their parents can work."
U.S. Rep. Pramila Jayapal (D-Wash.) said the executive actions demonstrate that Biden has "rightfully recognized... that access to affordable, quality care services are necessary for every family to thrive."
Jayapal, who chairs the Congressional Progressive Caucus (CPC), noted that the policies are "directly responsive" to the CPC's Executive Action Agenda that was unveiled last month.
"As the Covid-19 pandemic made abundantly clear, care workers are essential to our economy and to the health and well-being of all our communities," said Jayapal. "But for too long, child care and home care have been unaffordable, inaccessible, and care workers dramatically undervalued and underpaid. That is why the Congressional Progressive Caucus has advocated for legislative and executive action on the care economy, and why I'm thrilled to applaud this new order from the Biden administration today."
Child care advocates including Jayapal noted that they will continue pushing for Congress and the White House to pass legislation to ensure universal paid family and sick leave, "child care, aging, and disabled care."
"Lawmakers have long understood that ensuring families have access to affordable child care will require action from every level of government," said First Five Years Fund executive director Sarah Rittling. "We look forward to continuing to work with the White House and Members of Congress to build on the long-standing bipartisan support for child care, and enact solutions that address the daily challenges too many families across the country face in accessing the care they need."
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States and Cities Urged to Use $150B in Unspent Covid Relief Funds to Rebuild Public Sector
"There is no better use than spending the money on transformative investments that can restore the public sector and provide vital help to low-wage workers and their families," said one expert.
Jan 11, 2023
The American Rescue Plan Act of 2021 created a $350 billion fund to help state and local governments mitigate the Covid-19 pandemic and facilitate economic recovery. Nearly two years later, however, more than $150 billion remains unspent even as employment in the public sector and caring professions remains below pre-pandemic levels.
Dave Kamper, a researcher at the Economic Policy Institute (EPI) and 20-year veteran of the labor movement, argued Wednesday that states and cities should use tens of billions of dollars in untapped relief money to reconstruct the public sector and strengthen the care economy.
"The ARPA dollars earmarked as part of the State and Local Fiscal Recovery Fund (SLFRF) have fueled transformative investments across the country, but there's more to be done now," Kamper wrote in an EPI blog post.
"A return to the pre-pandemic status quo is not sufficient."
"As 2023 begins, state and local governments should prioritize spending relief funds on... rebuilding the public sector; expanding access to paid leave; and bolstering our systems of care through increasing access to quality childcare and eldercare, and supporting the workers who perform that work," Kamper continued. These are "three critical areas that are incredibly important for the welfare of children and families."
As shown in the map below, the 10 states with the lowest uptake of SLFRF dollars have each spent less than 7.5% of their allotted funds.
"It's not clear why those states have not yet made significant use of the money," wrote Kamper, though he noted that "all 10 states have Republican governors and Republican-controlled state legislatures."
Another tab in the map depicts significant public sector job losses nationwide since the emergence of the coronavirus.
"While private sector employment has exceeded pre-pandemic levels, public sector employment is still far below February 2020 levels," Kamper wrote. "In December, there were 452,000 fewer workers in the public sector than before the pandemic, and state and local governments in particular have 2.3% fewer workers than before than pandemic."
"Fully half those losses are in K-12 public education," he continued. "Not only are flourishing public schools necessary to the long-term well-being of children and communities, but it's also the case that parents can't easily reenter the workforce if safe and nurturing schools aren't available."
Noting that "state and local governments never fully recovered from the Great Recession of 2008-09" thanks to an ill-advised bipartisan austerity regime throughout the 2010s, Kamper stressed that "a return to the pre-pandemic status quo is not sufficient."
According to Kamper, "The shortfall in state and local government jobs is driven in large part by the inadequate wages paid to public sector workers."
As he explained:
Fully one-third of state and local government workers are paid less than $20 an hour, and 15% are paid less than $15 an hour. Black and Latinx employees are especially likely to be paid inadequate wages in the public sector, which also employs a disproportionate share of women workers. These workers need a raise, and state and local governments will need assistance in raising pay for their workers. Meanwhile, the teacher pay penalty has hit a new high: Teachers are now paid 23.5% less than comparable college-educated, non-teaching peers.
Fortunately, a solution is in sight, Kamper pointed out: Rather than continuing to sit on "substantial SLFRF dollars," policymakers "can and should" use these funds "to increase public sector pay and fill vacant jobs."
Kamper went on the make the case for investing idle SLFRF money to expand paid sick and family leave—a popular and lifesaving policy that is currently denied to most of the country's worst-paid private sector employees—and to boost care worker wages.
Low wages in the care economy, where "women and Black and Brown workers make up a disproportionate share of the workforce," are a key reason why "only 76% of the childcare service jobs lost during the pandemic have been recovered" and why there were nearly 300,000 fewer employees nursing and residential care facilities in November 2022 than in February 2020, Kamper observed.
"The needs of today demand action."
"It is unlikely that federal policymakers will enact significant new paid leave policies in 2023, nor can we expect substantial new federal investments in childcare, domestic healthcare, or long-term residential care" given the current makeup of Congress, Kamper wrote. "State and local governments can and should use SLFRF dollars to fill the gap, providing needed supports to working families and children."
"State and local governments, which spent so much of the Great Recession dealing with the consequences of austerity policies that ravaged public services, may very well be reluctant to spend down their still-ample SLFRF balances," he acknowledged. "There is, however, no better time than the present."
"The needs of today demand action," Kamper concluded. "State and local governments have more than $150 billion left to spend, and there is no better use than spending the money on transformative investments that can restore the public sector and provide vital help to low-wage workers and their families."
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