Roland Bourque was 30 years into a career with the Public Works Department in suburban Biddeford, Maine, when his symptoms became too obvious to ignore. It was 2012, and Roland, 6 feet tall with a gray goatee, high cheekbones, and close-cut hair, was on street-sign detail. He would order the metal shapes and print out their vinyl facings—stop, yield, one way—which he would carefully adhere before driving out to install the new signs or fix damaged ones. He knew Biddeford like the back of his hand. But something changed that year. While out checking on a sign one day, he called in to say he couldn’t remember where the street was. Soon he was forgetting how to do the repairs. His supervisor called Debbie Bourque, Roland’s wife of nearly four decades, to touch base.
Debbie was also concerned about her husband’s flagging memory. Indeed, Roland had been undergoing tests. “It doesn’t automatically go to, ‘Oh, it must be Alzheimer’s,’ because you’re 56 and otherwise really healthy,” she says. But there it was: the abnormal brain scan. Roland had early-onset Alzheimer’s. Before long, he was let go from his job, and his wife, who ran a small cleaning operation, cut back her hours to care for him. It was “by far the hardest thing I have ever done,” says Debbie, a petite woman with shoulder-length, blond hair and blue glasses. “Never could I have prepared for it, ever.”
As Roland’s mind deteriorated, Debbie’s duties became all-consuming. Her husband stopped eating unless prompted and was unable to shower or dress without assistance. He’d be up half the night, confused, and would sometimes sneak out of the house, so Debbie installed an alarm system. Dipping into her modest savings, she hired a home care worker to help but could only afford her for three hours a week. Earlier this year, Debbie gave up and placed Roland in a skilled nursing facility, where she was told he might qualify for Medicaid. “If he was here, at least I’d have him,” she laments. “I wouldn’t be going through this mourning period, and then another when he dies.”
Many more Americans may soon find themselves in a situation like Debbie’s. By 2030, the country will have roughly 26 million more senior citizens than it did in 2015, when at least 1 in 5 received help with daily tasks. The population of people older than 85 is projected to more than double, to 11.5 million by 2035.
This will place a huge burden on families. Even now, as most Americans plan to age “in place” rather than check into institutions, there aren’t enough home care workers to go around. As of 2015, roughly 70 percent of women with minor children were employed and thus no more available than men to take on the traditionally female role of caring for an aging parent or partner. Researchers project a shortage of several hundred thousand home care workers in the coming decades.
Why aren’t people jumping into the profession? Well, caring for elderly or disabled people is a low-status job with meager protections, and though rewarding at times, the work is often grueling, unpleasant, and emotionally draining. “The jobs are so unappealing that it is hard to keep workers in them,” noted the New York Times. “Many prefer the fast-food business.”
The pay is lousy, too. But many agencies that administer home care services are loath to bump up wages lest it cut into their profits. Most families cannot afford home care at its current price point—$20 an hour, or $41,600 a year for full-time help. Medicare doesn’t cover these costs, and Medicaid coverage varies wildly by state. And according to a 2016 report from the Economic Policy Institute, nearly half of Americans have no retirement savings, period. All of which is why families, home care workers, and elder advocates are keeping a close eye on a November ballot initiative in Maine, home to the nation’s oldest population.
“Question 1,” a.k.a. the Universal Home Care proposal, represents a radical overhaul of how a state might pay for senior care and is a new front in the battle over health care for all. The activists behind the initiative, bolstered by a streak of successes, are betting that it will, at least in Maine, transform home care into a desirable career. The idea is to fund the creation of a new workforce and eliminate the ragtag safety net that leaves families in the lurch. UHC would tax wealthy Mainers to cover home care for any senior who needs it. It would also raise wages by requiring that at least 77 percent of the funds the program pays to home care agencies goes toward compensating the workers. (Relatives caring for family members could receive a stipend.) It’s a Bernie-esque approach to a heretofore intractable problem.
Had Debbie Bourque been compensated for at least part of her time, she knows she could have kept Roland at home much longer—although given the endless nature of her tasks, “there’s not enough money in this government to pay for it, honestly, unless you’re getting paid a penny an hour.”
Domestic labor has for centuries been left almost exclusively to wives and daughters—or to slaves, immigrants, and other impoverished women. In the 1930s, when Congress passed the Social Security Act and the first major federal labor laws as part of the New Deal, domestic and agricultural workers were excluded—at the request of Southern congressmen—from minimum wage and overtime protections and the right to unionize. During the 1970s, black domestic workers formed groups like the Household Technicians of America to fight for the rights other industries enjoyed. Their efforts paid off in 1974, when Congress amended the Federal Labor Standards Act to cover most domestic work. But the lawmakers still excluded “companions” of the elderly, lumping them in with the “casual babysitter.”
These days, an estimated 2.2 million paid workers, largely women of color, care for elderly and disabled clients at home. Their median annual income, by some calculations, barely exceeds $15,000. In addition, about 20 million Americans attend to elderly or disabled relatives on their own, according to Paul Osterman, who co-directs an employment research center at the Massachusetts Institute of Technology. A recent report from the Institute of Medicine notes that some family caregivers spend 10 years or more balancing career and care responsibilities. The dearth of public support for these unpaid workers, the report adds, is “among the most significant overlooked challenges facing the aging US population, their families, and society.”
Roland isn’t the only adult Debbie has had to attend to. When Roland’s uncle was diagnosed with cancer, it was she who set him up with in-home hospice care. And when Roland’s mother grew frail, it was Debbie who made sure her mother-in-law was taking her medications correctly. “I am the only girl out of five boys,” she explains.
Indeed, up to 81 percent of family caregivers are women. Many are spouses, but 29 percent are daughters, according to one study—while only 18 percent are sons. “As the graying of America continues, women can expect to spend 18 years caring for elderly relatives,” writes Washington University legal scholar Peggie R. Smith. “A strong assumption endures that women are better equipped than men to attend to the private realm of family life.”
And that’s a problematic assumption. According to a 2012 AARP report, nearly 70 percent of family caregivers say they are compelled to make adjustments at work, turning down promotions, taking leaves, and sometimes quitting their jobs altogether. A 2011 study from the National Alliance for Caregiving estimated that elder care duties cost the average American woman about $324,000 in lifetime earnings. “Women’s progress could be undone,” Maureen O’Connor, a director at the Maine Primary Care Association, warned at a stakeholder meeting for Question 1, if women “are more and more heading back to the home.”
Activist Ai-jen Poo, whose decades of rabble-rousing helped pave the way for the Maine initiative, has a term to describe children of baby boomers who have gotten stuck caring for aging parents and minor children at the same time: the “sandwich generation.” Poo has met plenty of them in her travels. A daughter of Taiwanese immigrants, she graduated from Columbia University in 1996 and picked up where the domestic workers of the 1970s had left off. She spent the late 1990s working for a New York City nonprofit, organizing protests outside the homes of families the group suspected of withholding wages or physically mistreating women they had hired as domestics. Poo would also stake out parks, markets, and bus stops to meet nannies and learn about their working conditions. “Domestic work is so isolating,” she told me. It was her job to bring the women together.
Ai-jen Poo doesn’t come off as an agitator: She is slight, soft-spoken, and impeccably polite. But under her leadership, domestic workers have scored a remarkable series of victories. In 2003, the New York City Council passed a law bolstering overtime and other rights for household and elder care workers in the five boroughs. Seven years later, Poo pushed through a state Domestic Worker Bill of Rights with her newly created group, the National Domestic Workers Alliance—similar measures have since been enacted in seven other states. Starting in 2009, the NDWA and other groups worked with the Obama administration to finally extend wage and overtime protections to workers who assist the elderly at home. But the Maine ballot measure—designed in part by a spinoff of Poo’s group called Caring Across Generations—is her most audacious move yet. Amid growing public support for universal health care and living-wage laws, the campaign pushes the conversation a notch further, bringing some urgency to a crisis even the healthiest among us cannot avoid forever.
The Maine initiative would levy a marginal tax of 3.8 percent on adjusted gross income in excess of a certain threshold—currently about $130,000—and use the revenue to cover nonmedical home care for seniors and people with disabilities. If that sounds like a radical solution, consider that in Maine, as in the rest of the country, Medicare only covers actual medical expenses and preventive services. Medicaid pays for a portion of home care costs, but only impoverished individuals qualify, so elderly couples have to burn through their retirement savings before help kicks in. Some middle-class seniors even dole out their nest eggs to their children in advance to make themselves eligible, only to find Medicaid doesn’t meet all their needs.
The current setup leaves countless families stuck in the middle. While visiting Maine, I met Jessica Browne, who cares for her 63-year-old mother, Monica Browne. In December 2015, Monica was diagnosed with early-onset dementia. Jessica, who is only 33, quit her job at a tutoring agency and moved her mom into her place in Belfast. She and Monica aren’t poor enough for Medicaid, yet they aren’t rich either. Jessica can only afford a helper five hours a week, leaving her on the hook for what amounts to full-time babysitting. She and her mom were never close, Jessica says, but now she has to help Monica bathe, feed her, and chauffeur her everywhere. Although Jessica still tutors students at home part time, she can’t so much as get a weekend off. She tries not to dwell on how dramatically her life has changed, but “I talk to people my age and it’s like, ‘Wow, this is really different.’ They’re getting married and having kids and building their careers. And I’m just trying to survive.”
If Universal Home Care passes, Jessica would likely be compensated for at least some of her time, and she would be able to hire more help. As it stands, she’s looking at decades of obligation. Moving her mother in “was like jumping off a cliff,” she says. “It’s going to really affect my life—and it has—just being responsible for another person and everything that comes with that. What’s going to happen? How bad is this going to get? I just long for freedom.”
The tax imposed by the Maine initiative would raise an estimated $310 million per year, to be distributed—via a board of domestic workers, home care agency representatives, and senior citizens or their family members—to elders who need home care, regardless of their socioeconomic status. In addition to covering workers’ wages, the money could be used for expenses like a home wheelchair ramp or to help compensate a caregiver relative. When a family applies for funds, the board would conduct an assessment and then, in theory, grant enough money to cover the family’s costs. “In the 21st century, when we don’t have anyone at home caring for loved ones, everybody’s out in the workforce, we need a whole new approach,” Poo says—one that supports “the economy at large” and “can actually make all the jobs in the care industry good jobs.”Republican state legislators and their termed-out governor, Paul LePage, also have been vocal in their opposition, both to the proposal and to the Maine People’s Alliance—the local group partnering with Poo’s national organization on Universal Home Care—which has taken heat from the right for receiving money from groups linked to George Soros. But the state Legislature has done little to deal with the elder care fiasco.
The idea has plenty of opponents. The Maine Hospital Association and the board chair of a statewide hospice and home care trade association have complained that the UHC oversight board would be privy to people’s private health information in violation of federal law. In June, lobbyist Newell Augur, who has worked on behalf of the same trade association, helped launch an opposition group called “NO on One/Stop the Scam.” Colleen Hilton, the president of another hospice organization, criticized the initiative for enabling “millionaires” to get tax-funded home care. In May, the state Chamber of Commerce participated in a press conference at which a former chief justice of the Maine Supreme Court called the UHC proposal “deeply unconstitutional in many respects”—the chamber’s president added that it would push the tax rate for some Mainers to nearly 11 percent.
The federal government, too, has largely ignored the problem. A bipartisan commission formed under President Ronald Reagan considered supplementing Medicare to cover long-term, in-home care, but that went nowhere. The Affordable Care Act included a provision—eventually ditched—to improve the market for private long-term care insurance. A 2017 home care bill introduced by Sen. Susan Collins of Maine passed in January but did little more than call for a “family caregiving strategy.”
A few states have pursued limited solutions. In Hawaii last year, Poo’s group helped push through a law that gives family caregivers of kupuna (seniors) $70 a day. But a recent Washington state bill to help families pay for elder care died on the vine. Other states have goosed their Medicaid programs, raising the eligibility cutoff to three times the federal poverty level or shifting some funds from nursing homes to home care. But none of these strategies has been comprehensive.
On a chilly spring day, I head to the Statehouse in Augusta with Poo and members of the Maine People’s Alliance as they try to drum up legislative support for Universal Home Care. As we wait in a small room on the building’s first floor, the activists nibble on sandwiches and cookies. Finally, a handful of Democratic state senators file in. Poo takes a seat at the head of the table, introduces herself, and says a few words about the crisis before ceding the floor to Mirkka Lyons, a young woman with long pink nails and pink and blue streaks in her hair. Lyons was an elder care worker for 14 years, and it “came at a cost,” she says.
One of her clients, a woman in her 90s, needed round-the-clock help with the basics—cooking, cleaning, driving, ambulation—and quickly grew attached. “It’s extremely intimate work,” Lyons tells the senators. “What makes a really good care worker is someone who breaks the rules of health care. Someone who isn’t clinical, who opens up about themselves.” But the long, emotional days left her drained, and the meager pay—she started at $9.25 an hour and worked up to $11.25—made it difficult to provide for her two children.
When another health care company offered her $14 an hour, Lyons worried that accepting the new job would betray her client: “I could not look her in the eye and say, ‘You’re not important enough.’” But Lyons finally caved. “My ‘grandmother’ went to a nursing home against her express wishes,” she says, wiping away tears. “And it’s because I left.”
The lawmakers appear moved, but they are also wary. In recent years, the Maine People’s Alliance has pushed several proposals that were voted down in the divided Legislature and were subsequently approved by voters. Last year, notably, Mainers voted to expand Medicaid eligibility to anyone making up to 138 percent of federal poverty wages, but LePage, a tea party Republican, pledged to thwart the initiative and blew off an April deadline to submit a Medicaid expansion plan to the federal government. (Advocates of the expansion are suing to force LePage to follow the voter-approved law.) “We went out on a limb and were left hanging,” says one female senator. “Honest to God, I’m not sure I can publicly come out and support this.” Some of the others nodded, noting they were apprehensive about such a substantial and targeted tax.
“I am a firm believer in universal health care,” says a tall, gray-haired male senator. “But how will you pay for it?” After Poo explains the tax, Mark Dion, a gubernatorial candidate from Portland, takes a break from his sandwich. “That’s affordable?”
Perhaps sensing the lukewarm reception, Poo offers an ultimatum. The system is due for a change whether the legislators are ready or not, she tells them, and this is not a moment they want to miss out on. “Voters are on fire,” she says. “Women are organizing…There’s going to be a big conversation about this: Not just what we’re against, but what we’re for.”
This article has been updated.