John Hersey
My grandmother spent months confined to a hospital bed, weak and unable to swallow, before she miraculously recovered enough to return home. But once there, she needed assistance to accomplish the basics of her life: preparing meals, cleaning the apartment, bathing. Such support was so expensive that it would quickly bankrupt her.
She wasn’t alone. What my grandmother faced was precisely what our current care system requires before it steps in to help.
Medicaid will pay for long-term nursing care in the home, but only if applicants can show that they carry no more than $2,000 in assets. That includes cash, savings accounts, investments, or property other than a primary residence, the equity of which cannot exceed a certain limit. Elderly Medicaid recipients can still have a car, but most 90-year-olds like my grandmother don’t have much use for one. They are also allowed to put some money aside in a burial fund so they won’t be interred in a pine box.
Every check my grandmother had written and every withdrawal she had made for the previous five years was scrutinized to ensure she was truly poor and not hiding her financial condition. Eventually, she got that vital in-home care paid for through Medicaid, but at a cost. Many of the elderly on Medicaid can no longer afford independent living; many survive on food stamps; many seek charity, or the support of family, to subsist. Their ability to choose how to live out their final days becomes constricted, and their anxiety in retirement heightened.
The other option for those who don’t want to see their loved ones forced into this penury is to care for them themselves. But had it fallen to me at that time, I would have faced an insoluble dilemma. For close to 20 years before I took over at the Prospect, I was a freelance employee. Taking off weeks or even months to care for a loved one would have brought my income to a sudden stop. Unless you have a job with generous benefits, a forgiving boss, or the technical ability and determination to be able to juggle caregiving and full-time work from home, you’re probably in this situation too.
I don’t have a child care story of my own to draw from because I don’t have children. But just a couple of weeks ago, I was speaking with Migreldi Lara of Reading, Pennsylvania, a hair stylist and single mother of three. She told me through an interpreter that her salon had closed almost immediately after the COVID-19 pandemic began, but reopened several months later. She hasn’t been back, however, because her children didn’t have in-person schooling to attend, and they were too small to be left alone. She was months behind on rent, and at the time that we talked, on the verge of homelessness.
I’d be willing to bet that there isn’t a family in America that doesn’t have one of these stories. Virtually everyone can tell you about a time in their life when a parent or grandparent or uncle or aunt or child or grandchild needed care, and the struggles and sacrifices the family had to make to secure it. Mine are relatively benign. My grandmother was fortunate to have a family willing to support her and allow her to complete her life with a modicum of dignity. The family or medical leave moment never happened for me. My mother-in-law and her sister, both of whom suffered with dementia in their final years, had accumulated enough savings through their lives to afford strong support.
I’m the lucky one; not every story ends this way. And American public policy doesn’t seem to care. Every four years, Republicans and Democrats spar over which party will do more for working families. But then they discuss tax credits and apprenticeships and ladders of opportunity. When it comes to helping people care for family members, though, the country is failing.
In the years when a single income could produce a middle-class lifestyle, we pushed these burdens onto uncompensated mothers, who may or may not have wanted to stay home as caregivers. Today, the majority of children grow up in a home where all the parents caring for them work. Removing a breadwinner from the workforce to care for someone is unthinkable to most families. And we have not adapted public policy to account for these changes.
Family life today involves a perpetual strategizing to figure out how to incorporate care work into busy lives and strapped budgets. When a child is born, the family must figure out who can raise them; when a parent grows ill, their care must be worked out. Often these things can happen simultaneously, squeezing sandwiched families to the breaking point. Families with children are typically in the earliest part of their career cycle, while seniors are beyond their working life and often on fixed incomes; in both cases, the care needs occur at the worst possible financial moment. And an unexpected illness or disability creates an even bigger shock.
Family life today involves a perpetual strategizing to figure out how to incorporate care work into busy lives and strapped budgets.
These almost universal situations receive virtually no support. State and federal child care coverage is simply inadequate, with fewer than one in six eligible children receiving coverage under the main federal program. In-home and center-based child care is somehow simultaneously prohibitively expensive for parents and pervasively unremunerative—paying poverty wages—for workers. And often it cannot be found at all in the child care deserts that blot the American landscape.
Only three countries in the world supply no paid parental leave, and just 13 provide no mandatory sick days; Americans live in the one and only country that lacks both. Only 7 percent of adults over age 50 have the kind of insurance policy that can cover long-term care needs, the average cost of which in the U.S. is $266,000. We have institutionalized long-term care in nursing homes that are often substandard and have increasingly become means for private equity vultures to extract the final bits of wealth from their customers. Direct care services for the elderly, either in nursing homes or in the home, is one of the fastest-growing jobs in the economy, but as low-wage a career choice as child care. Meanwhile, the small businesses that handle child care, many of them minority-owned, verge on bankruptcy or closure as a fact of life.
And while the pandemic has shone a bright light on these inadequacies, the care economy was in crisis before we ever heard of the novel coronavirus.
The effects of these dilapidated frameworks touch every corner of our lives. When someone must leave the workforce to care for a child or elderly loved one, more often than not it’s a woman, stalling her lifetime earning potential. Yet, this stunting of financial growth is often seen as preferable to going into debt to pay for outside care. Forced to choose between giving care and keeping a job, workers’ morale suffers, as does worker retention. Child development, elderly vitality, and personal health outcomes all suffer from how difficult America makes it to care for our families. And the creation and growth of a low-wage workforce, even though it’s in a critically valuable profession, is intolerable and contributes to the runaway inequality that hovers over the entire economy.
These burdens fall most heavily on women of color—the primary group in the care workforce and the cohort most likely to have to leave their jobs to perform uncompensated care. Historically, the care work of Black and Latina women has been undervalued and neglected in terms of its contribution to society. Our broken care infrastructure reinforces this lingering discrimination.
Liberal advocates have a host of recommendations to fix the care economy, but they remain troublingly segregated from one another. There are plans for universal child care that do nothing for long-term care; there are plans for parental leave that offer nothing for medical leave; there are plans to solve the problems of seniors and people with disabilities that keep the problem of caring for small children unsolved.
Yet we’re all part of families that can include children, parents, grandparents, siblings, even those outside the immediate family who might need help. We don’t have one stable or static care need over the course of our family lives. And the problems families face with care are integrated. A family that must suddenly care for a parent may also need assistance for their child; a caregiver who falls ill must be cared for and replaced in caregiving. These waves of care needs rise and fall in unpredictable ways, and just one part of a safety net won’t cover them all.
About a year ago, the National Academy of Social Insurance issued a long report identifying options for a Universal Family Care system, a social-insurance fund paid for through worker payrolls along with other special assessments. Universal Family Care would cover, with one point of access, universal child care and early learning, paid family and medical leave, and long-term services and supports. This would fill a distressing gap in American life that has grown into an absolute crisis. More than anything, it would allow families to exhale.
Even relatively affluent families worry about a sudden shock that requires extra caregiving, or the management of child care costs that continue to escalate. Universal Family Care would offer peace of mind to these and other families across America. It would give them the freedom to choose to work outside the home, or be gratified rather than stressed with care work. It would give them the security to have children, without the financial burden becoming too big a hurdle to clear. It would give seniors the option of staying connected to their communities and loved ones by aging in place. It would make life in America a little more pleasant and connected. We would all have more of a stake in each other, and in the success of each other’s families.
This special issue, in partnership with our friends at the National Domestic Workers Alliance and Caring Across Generations, is about family care: how it works right now, and the universal solution that can make it better. Family care has too often been placed on the peripheries of the top issues in American politics. In this election season, we want to stress the basic inhumanity of how hard public policy makes it to create and maintain a family, and provide ideas about how we can change it so that families thrive.
We do it through on-the-ground reporting that documents the stress that caregiving causes right now with scant federal support. We provide evidence for how a universal social-insurance system can work to alleviate the care burden by sharing the cost burden. And we highlight the grassroots movements for improvements in caregiving that have already paid dividends. Most of all, we talk to people, mostly women of color, in the caregiving industry and at the forefront of decisions within families on care, whose testimony explains why and how this system is crying out for an overhaul.
Child development, elderly vitality, and personal health outcomes all suffer from how difficult America makes it to care for our families.
Time and again, opportunities to transform aspects of family care have fallen short in Washington. But the worm may be turning. Four years ago, Hillary Clinton called for 12 weeks of paid family leave and a cap on family child care costs. This year, Joe Biden has made caregiving one of the four pillars of his “Build Back Better” agenda, with $775 billion in investment focused on expanded access to in-home support for long-term needs, universal pre-K, improvements to care facilities, and increased pay and union representation for caregivers. The progression from Clinton’s plan to Biden’s, to bigger and better promises of intervention, shows the growing importance of the caregiving crisis. Dealing with family care can no longer be confined to a swiftly forgotten position paper; it’s now a policy imperative.
Today, we bury families in worry, game-planning, and paperwork. We punish them for having too much money and fail to fully support them if they don’t have enough. We’ve failed to remove a key obstacle to families’ quality of life. In 1935, when the situation of elderly poverty was intolerable, we created Social Security, devoting the resources of the nation to ensuring dignity for senior citizens. That investment in each other, spread across workers and employers, made an enormous difference. This issue tries to make the case that we all must pitch in again. Because at one point or another, we all need to be cared for.
