Home health aides care for the elderly. Who will care for them?

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Part of Issue #5 of The Highlight, our home for ambitious stories that explain our world.

When the alarm clock went off at 7 am, Angelica Rios had barely gotten four hours of sleep. She rolled out of bed anyway and slipped into her Winnie the Pooh scrubs.

“I have a lot of trouble sleeping,” Angelica said as she combed mousse through her thick brown curls. She picked up two silver hoop earrings and clasped one onto each ear. Then she laced up her sneakers and grabbed a bottle of Gatorade on her way out the door.

Angelica has a lot to keep her awake at night. As a 25-year-old single mom, she worries about how she will afford day care when her 4-year-old son, Elijah, returns from spending the summer with his father. She worries about coming up with $680 to cover the rent for her two-bedroom apartment in Albuquerque if her car breaks down again. She worries about how she will pay back the $150 cash advance she took out from her employer to pay July’s bills.

“I really need to get a second job,” Angelica said. She recently interviewed for a position working the assembly line at a factory, making prepaid phone cards, but hasn’t heard back. “It’s a struggle. But when is it not? Life’s always a struggle if you’re a single mom.”

Angelica already works seven days a week as a home health aide, caring for an 89-year-old widow with dementia who lives alone. The $12.50 an hour Angelica earns isn’t enough, so she and her son rely on government assistance, such as food stamps and Medicaid.

On a recent morning, Angelica drove her 2002 Ford Taurus (it has “stage 4 cancer,” she joked) along the dry, dusty foothills of the Sandia mountain range. The sun was still hiding behind the granite peaks, but the temperature was climbing to 90 degrees. She drove past auto body shops, an elementary school, and a go-kart track.

Fifteen minutes later, Angelica turned right into a neighborhood of tidy beige houses with two-car garages — a world apart from the cramped rowhouse where she grew up in Philadelphia. Then she pulled into the driveway of a house with a red-tiled roof.

Her client, who asked not to be identified for privacy reasons, stood waiting at the door to her garage, clutching a walker. She was tall and slender with sharp blue eyes, still wearing her pajamas and bathrobe when Angelica arrived.

“Has Sparky gone out to pee?” Angelica asked, referring to the widow’s 7-year-old terrier. Her client shook her head.

Angelica walked inside and opened the back door to let Sparky out. Dishes were piled up in the sink. The bed was unmade. The refrigerator was nearly empty.

Angelica mostly likes her job, despite the low wages — even though she never gets a day off. Her current client is far less difficult than others she’s had. Her last client masturbated in front of her (she quit), and the person before him soiled herself constantly, leaving Angelica to clean up (that client later died).

“How’s your throat? Do you want me to make you a cup of tea?” Angelica asked cheerfully as she scrubbed a pot in the sink.

“Yes, please,” the woman answered, sitting down.

Her client was in a good mood, but that wouldn’t last long. Later, she would get cranky and yell at Angelica for not following her orders, like failing to get two visiting journalists to leave before lunchtime. None of it ever seemed to faze Angelica.

She carefully wrote down each task she completed. “Left to run errands. Finished dishes. Cleaned dog poop from backyard. Disinfected stovetop and sink,” she scribbled. The list went on for about half a page. Angelica keeps track of each chore she completes to help her stay organized, and for other caregivers and relatives to reference.

This is what it’s like to do one of the most in-demand jobs in the US, a job that has many names, depending on the state and tasks involved: Home caregiver. Personal care assistant. Home care worker. Home health aide. The title doesn’t matter; what’s important is that this is the future of work for millions of Americans.

According to the latest estimates from the Bureau of Labor Statistics, the US economy is expected to create about 1.2 million new positions for home caregivers like Angelica by 2026 — a 41 percent increase from the 2.9 million personal care and home health aides working in 2016.

Aging baby boomers and expanded Medicaid coverage have led to the surge in the need for workers to care for the sick and elderly in their own homes. But these positions, which require minimal training and no college degree, are among the lowest-paid in the country.

Beyond that, home care workers are an easily exploitable workforce. Because of the job’s roots in slave labor, these workers have long been excluded from US labor laws. Live-in caregivers are not entitled to overtime pay or a minimum wage under federal law, or any other labor protections. Neither are caregivers who spend less than 20 percent of their job helping clients do basic tasks. None are protected from racial discrimination or sexual harassment. They have no right to a safe workplace, and in some cases, they have no collective bargaining rights. One of the fastest-growing jobs in the US is a really lousy one.

It’s no wonder the caregiving profession has one of the highest turnover rates in the country. In interviews, several home health aides described their work as emotionally and physically draining, with few rewarding moments.

“I pray every day for change,” said Deborah Brockington, a 57-year-old home health aide in Raleigh, North Carolina. “We need the work, and [employers] think paying us little money is better than no money. But we still have to pay our rent.”

The stakes are high. The problems health aides face could compromise not only the future of American work but also the state of care for the aging population. If unemployment keeps dropping, and caregivers discover better job options, they won’t stick around for long. Yet few policymakers have attempted to address the problems in a system rooted in racism and sexism.

In response to a growing call for change, a handful of states are paying attention and extending labor rights to home care workers for the first time. But that’s hardly enough to avert a coming crisis.

The labor force of the future

There’s a lot of hype about the future of work. You may have heard dire warnings about robots taking jobs, or that work will be all digital.

There’s a grain of truth in that thinking, but the reality is that the future of work will also include a lot of low-skilled, unglamorous service jobs, just like the one Angelica does.

Only one industry is expected to grow faster and add more jobs to the US economy than home care work in the coming years: the renewable energy business.

But it’s not just about future growth. The US economy has been adding thousands of jobs each month. Most of the new jobs are in health care. Many are in caregiving.

Last year alone, there were 153,050 new positions filled for home health and personal care aides. That’s three times higher than the number of jobs created for registered nurses, which has been another one of the fastest-growing professions since the Great Recession.

One reason for this is simple: Baby boomers are getting older, and within a few years, the oldest of them will reach the age when they need help to do basic tasks. Right now there are 6.3 million adults over the age of 85. That number is expected to more than triple to 19 million by 2050.

“Demand for home health care workers is growing at unprecedented rates also because people are living longer, and living longer with chronic diseases,” said Adam Seth Litwin, who teaches industrial and labor relations at Cornell University.

The second reason is a cultural shift in how Americans value their independence toward the end of their lives.

Twenty years ago, it was common in many regions for older adults to live in nursing homes. In 2000, there were 1.5 million people who did.

Fast-forward to 2018 and 80 percent of those over the age of 50 said they would prefer to live at home with help rather than move into a nursing home. A lot of the change is related to family guilt about institutionalizing relatives, and part is a desire for personal independence. Federal and state governments now also prefer what is known as “aging in place”: Medicaid, the federally subsidized health insurance program for low-income Americans, is the largest source of funding for personal care for the elderly and those with disabilities, spending about $82 billion a year.

“I thought, ‘I don’t have to sweat or work in a factory anymore’”

The third reason is that state governments began diverting more money to home care services starting around 2015. It wasn’t just because of patient preference, but because it’s a lot cheaper than institutional care. They also had to comply with a 1999 Supreme Court ruling that required government-run programs to provide health care in the least restrictive environment available. The justices ruled that it was a violation of the Americans With Disabilities Act for the government to send people with disabilities to facilities that limit their freedom if they can continue living at home with some help.

Medicaid now spends far more on home-based care than institutional care. That helps explain why fewer and fewer people are living in nursing homes. By 2016, the number of people living in nursing homes had dropped slightly to 1.3 million, and more than 1,000 nursing homes have closed since 2000, according to the latest data from the US Centers for Disease Control and Prevention. It may not seem like a huge change, but it’s significant when you consider that more — not fewer — Americans are reaching the age when they are more likely to need care.

However, there might not be enough Angelicas willing to provide that care if the pay means they can barely take care of themselves.

Who takes care of elderly and disabled Americans?

In many ways, Angelica represents the typical American home care worker.

She is a woman (87 percent of home care workers are). She is a person of color (60 percent are). She didn’t go to school past high school (52 percent have a high school diploma or less). She gets food stamps and Medicaid (51 percent get some form of public assistance).

Like many of the professional caregivers interviewed for this story, Angelica said she learned how to do the job by caring for her relatives. She grew up in a rough neighborhood in Philadelphia and raised her younger sister.

Angelica’s parents had issues with alcoholism and were physically abusive. Her eldest sister disappeared for weeks at a time, often leaving behind her four young daughters for Angelica to take care of too.

“By the ninth grade, we had no parents because they were either drunk or in bed,” Angelica explained. So she became the main caregiver. She cooked meals for her nieces and her younger sister. She made sure they bathed and would dress them.

Meanwhile, she worked one factory job after another to help pay the rent — seven jobs in seven years.

During and after high school, Angelica assembled medical syringes, made newsprint, and prepared tortilla chips in an assembly line. But she longed to be an artist. She even enrolled in a fine arts high school, making clay sculptures, drawing with charcoal, and painting with acrylics and oil.

After high school, Angelica moved to Michigan and met Elijah’s father. They dated for several years, but after things ended with him, Angelica decided to start a new life out West. She realized that she didn’t want her son to grow up in the same environment she did, where, she says, she had seen too many shootings and corpses.

So in early 2018, she packed up Elijah and the Taurus and moved to Albuquerque. The first job she got was at a factory. She made solar panels for $11 an hour.

It was a few months after she moved to Albuquerque that she learned about the New Mexico Direct Caregivers Coalition, a nonprofit that was starting a co-op for home care workers. As part of the program, caregivers would own a home care business together, instead of working for an agency that takes a big cut of their pay.

Angelica loved the idea, especially because she didn’t need a professional license in New Mexico. Some states require minimal training, but few states require a license.

“It sounded great,” she said. “I thought, ‘I don’t have to sweat or work in a factory anymore.’”

It’s been a year since she started working as a home health aide, and she’s watched other caregivers come and go. While it’s nice to be part-owner of the co-op, the job is physically and emotionally taxing, and turnover is high. But demand for workers like Angelica isn’t slowing down.

Making $11.57 an hour

It’s no longer news that the US is experiencing a widespread labor shortage. But the shortage is most severe for unskilled and low-skilled jobs. Home care workers are among those who are hard to find. Not everyone is willing to deal with difficult patients for low pay and no benefits when so many other jobs are available.

Some agencies see 100 percent turnover within a year; 50 percent turnover is considered good, says Bill Dombi, president of the National Association for Home Care & Hospice, a trade group that represents more than 33,000 home care agencies and hospice providers. He says the top complaint he hears from employers is how hard it is to find and keep workers.

The median annual salary for a home health aide was $24,200 in 2018, above the $16,460 federal poverty level for a family of two. That’s about $11.57 an hour. Cooks, janitors, and farmworkers make more than home care workers do, and they aren’t caring for the sick and elderly.

In interviews with Vox, economists shared various reasons wages are so low for such a high-demand job. After all, basic economic theory suggests employers will pay more when they can’t find workers.

However, jobs that require emotional and social skills are valued less in the labor market, some economists say. Another theory suggests that caregiving is a business with low profit margins. One economist believes the labor shortage may be overstated and that there’s actually a bigger pool of low-wage workers than government data suggests.

“Despite an appearance of a tight labor market, it’s probably not that tight for this group,” Michael Carr, an economics professor at the University of Massachusetts Boston, told Vox.

“If women are devalued in the marketplace, women of color are even more devalued”

But there’s one underlying problem they all agreed on: demographics. Home health care workers are overwhelmingly women, people of color, and immigrants with low educational attainment. Randy Albelda, who is also an economics professor at UMass Boston, says research clearly shows that occupations dominated by women are lower-paid.

“If women are devalued in the marketplace, women of color are even more devalued in the marketplace,” said Albelda, who studies women in the low-wage workforce.

But it’s not just about low pay. The majority of home care workers get zero benefits.

About 88 percent of domestic workers don’t get paid time off, sick time, employer-sponsored health insurance, or any other benefits. Angelica, for example, never gets a day off.

“Take a day off? And miss paying a bill? I can’t really afford to take a day off,” she said.

So she worked through Christmas Eve and Christmas Day, New Year’s Eve, New Year’s Day, and every holiday since. When her son is sick or her car breaks down, she can have a co-op colleague cover her shift, but Angelica won’t get paid. That means it’s even harder for her to make rent.

“We don’t go out; we don’t do anything that month. It’s just ramen and eggs to survive,” she said.

Yet she’s one of the lucky ones. Because Angelica is part of a co-op instead of working at a for-profit company, she gets to keep about two-thirds of the money clients pay for her services. The co-op charges clients $18.50 per hour if they need more than nine hours of care each week; Angelica gets $12.50 of that. The rest covers the co-op’s administrative costs and goes toward a pool of money that caregivers will split at the end of the year.

That’s not common. About two-thirds of all home care workers are employed by businesses that take a huge cut of the earnings. For example, in New Mexico, the median pay for home health aides is $9.50 an hour, but most agencies charge clients up to $20 an hour, said Adrienne Smith, director and CEO of New Mexico Direct Caregivers Coalition, which advocates for home care workers.

“It’s a really crummy job,” said Smith. “They are undervalued, underpaid, and overworked.”

Smith notes that the fast-food chain Wendy’s pays about the same but provides workers with health insurance.

Deborah Brockington, the home care worker in North Carolina, gets $10 an hour to care for two sisters who live together, five days a week. One is 75 and the other is 86, and they have trouble with basic tasks. So Deborah dresses them, brushes their teeth, cooks, and does light housecleaning for them.

Unlike Angelica, Deborah works for a home care agency that placed her with the clients. She hasn’t gotten a raise in four years. Deborah said she believes the company charges clients at least $22 or $23 per hour but doesn’t know for sure because the companies don’t tell their workers. When she recently asked for a raise, her boss said no.

“[My supervisor] said that if I needed more money, I had to work more hours,” she said.

Deborah is on Medicaid and qualifies for food stamps. Two months ago, her car was repossessed because she couldn’t pay the monthly lease. Now she takes a bus and walks nearly 2 miles to get to work, unless she can get a ride.

“I am tired, I’m frustrated,” she said in a phone interview. “I get my paycheck and I can’t pay for some things I need to pay for.”

Dombi, whose group represents the home care agencies like the ones that hire caregivers such as Deborah, was one of several people Vox spoke to who placed a lot of the blame on governments for keeping wages low, in particular through state Medicaid programs. The health insurance program only pays about $12 to $15 an hour for home care work, depending on the state. So agencies pay low wages to cover payroll taxes, training, and background checks while still turning a profit.

“It puts [agencies] in a terrible position,” Dombi said. “They don’t want dissatisfied workers. Turnover creates costs.”

He argued that lobbying states to reimburse home care providers at a higher rate is one possible solution. Lawmakers could even include a provision ensuring that the rate increase would go entirely toward increasing pay for home care workers.

Kezia Scales, director of policy research at PHI International, a national nonprofit that advocates for home care workers and their clients, agreed with Dombi. But she pointed out that agencies have many private clients who can afford to pay higher out-of-pocket rates, but that doesn’t translate into higher pay.

“What we’re seeing is wages remaining low all across the sector,” Scales said. “This is where we confront a need to better finance our long-term care systems.”

If nothing changes, said Cornell’s Litwin, there will be an extreme home care shortage.

“This may be a crisis that can only be solved through policy,” he said.

Violence on the job

Another reason the job has high turnover: It’s exhausting — physically and mentally.

Clients with dementia can be difficult. They get confused, disoriented, and overwhelmed, which often gets translated into aggression and depression. Mood swings are common among clients with developmental disabilities too.

Amalia Rodriguez, a 54-year-old immigrant from Mexico, runs the caregivers co-op Heart Is Home in Albuquerque that Angelica is part of. She occasionally fills in when Angelica and other caregivers are sick. Before that, she worked for an 85-year-old woman who, she recalled, repeatedly made racist, derogatory comments about immigrants and Mexicans.

It often happened when Amalia was driving her to doctor’s appointments. They would see someone asking for money at an intersection, and it would set her client off, regardless of whether the person was Latinx.

“She would say, ‘Mexicans are lazy and they just want everything handed to them,’” Amalia recounted. In February, Amalia pointed out that a homeless person could be a veteran, and asked her client why she thought he wasn’t getting government help. “She said, ‘You don’t know anything about the law; you just make stuff up. If you don’t like America, why don’t you go back to Mexico?’” Amalia said.

She quit.

“Our work isn’t valued and we’re treated as inferiors,” Amalia said. “Not to mention what a hard job this is — transferring immobile, heavy [clients] all around the house.”

Yet home care agencies offer little to no training on how to deal with difficult situations, said Smith, of the New Mexico Direct Caregivers Association. Amalia, for example, never learned the proper way to move immobile clients until she heard about the nonprofit and participated in its free training programs. If she’d injured herself at the job she had before the co-op, she wouldn’t have been entitled to workers’ compensation because home care workers are not considered their clients’ employees.

Now Smith’s organization hosts free training sessions for home care workers. Sometimes the sessions focus on communication with clients, but they’re also about self-care and personal safety.

On a recent Wednesday, Smith led a session for five women who work at a group home for people with developmental disabilities. The point of the training was to help the caregivers deal with difficult clients.

“What do you think is most challenging for you, emotionally, in these settings?” she asked the group of women seated around the kitchen table.

“When we get hit,” answered one woman.

“We tend to take a lot of physical abuse, mental abuse, you know,” said another. “We’re called every name in the book and get spit on. Stuff can get pretty physical. When a client is having a behavior, they have rights, so we can’t do anything to protect ourselves ... we have to literally just stand there and get the physical abuse. And that’s very frustrating.”

She then described a recent scenario in which a client grabbed a colleague’s hair, pulled her into a corner, and spit in her face several times.

“So what is it like when you’re hit and spit at?” Smith asked.

“It messes with you mentally,” one caregiver said. “It makes you traumatized.”

“It makes you question if this is something you want to commit to. Is this a place I want to be at?” said another, adding that it’s normal to get bruises and black eyes at work. “It’s degrading.”

Smith moved on.

“What was it that brought you to this field?” she asked the group.

They all said the same thing: caring for people, and the deep human connection it can create.

“I feel good knowing that I am helping somebody’s family member, even though it’s not mine,” one caregiver answered. “And I would hope that if I were in the same situation and it were one of my family members, I would want them to get the best care possible.”

Their answers reflected a deep empathy and willingness to put others’ needs before their own — a willingness too often taken advantage of by employers and lawmakers who won’t even give them the right to a safe workplace.

Congress created loopholes to deny labor rights to home care workers

Nearly every expert interviewed for this story pointed to historical reasons to explain why home care work is difficult: American society has always undercompensated the work of women, immigrants, and people of color.

“It’s part of America’s historical legacy that work considered unskilled and primarily done by women and people of color is not recognized as a distinct occupation,” said Scales, of PHI International.

That legacy is one reason behind the gender and racial pay gaps. Women are still earning 80 cents for every dollar a man earns, and women of color earn as little as 53 cents on the dollar.

That legacy also helps explain why Congress excluded domestic workers and farmworkers from the first federal labor protections it passed in the 1930s as part of the New Deal.

The Fair Labor Standards Act (FLSA) of 1938, for example, excluded both groups from the right to earn the minimum wage or get overtime pay. Farmworkers and domestic workers were left out as a concession to Southern lawmakers, whose constituents were highly invested in paying low wages to personal servants and farm laborers.

At the time, that workforce was overwhelmingly black and Latinx, and excluding them from a minimum wage was intentional. Today, about a quarter of farmworkers and 67 percent of housekeepers earn less than the minimum wage. Their second-class status is directly tied to America’s legacy of slavery and racism.

Lawmakers amended the FLSA in the 1970s to cover most domestic workers, but not live-in housekeepers, nannies, and home health aides who provide “companionship services.” Because most caregivers are also companions, the amendment meant that home health aides — once again — were excluded from minimum wage and overtime rules.

Both groups were also left out of the National Labor Relations Act of 1935, which gave workers the right to form labor unions and organize for better working conditions.

When Congress passed the Civil Rights Act in 1964, some domestic workers were left out again. That’s because the law didn’t include protections for workers whose employers have fewer than 15 employees. To this day, it’s not illegal under federal law for employers to sexually harass their nannies and housekeepers, or to discriminate against them based on race, religion, gender, or national origin.

The same thing happened when Congress passed the Occupational Safety and Health Act in 1970. The landmark labor law, which established a worker’s right to a safe and healthy work environment, didn’t extend that right to domestic workers and farmworkers.

This is not a tiny part of the workforce: About 2 million people in the US do domestic work, according to the National Domestic Workers Alliance.

In 2015, the Obama administration closed some of the FLSA loopholes. The Labor Department finalized a rule that year clarifying that caregivers who spend most of their shift helping clients dress, bathe, eat, or clean are not excluded from federal labor laws as mere “companions.” But that still left some space for employers to argue that their caregivers aren’t covered by the FLSA if they don’t spend most of their shift doing chores or helping their clients bathe and dress.

Domestic workers are no longer accepting the status quo, though.

Caregivers are fighting back

The fact that home care workers and nannies can’t unionize has made it hard for them to fight congressional efforts to exclude them from labor protections. So instead, they began organizing without a union at the national level in 2007, launching the National Domestic Workers Alliance, the nonprofit group that advocates for housekeepers across the country and has pushed change at the state level.

So far, nine states have passed laws extending labor protections to domestic workers: Oregon, California, Connecticut, Illinois, New York, Massachusetts, Hawaii, Nevada, and New Mexico. In July 2018, the city of Seattle did too.

The group has since taken its campaign to Capitol Hill. Hundreds of domestic workers have been traveling to Washington, DC, in the past year to talk to lawmakers about their need for federal labor protections. In April, a group of them met with Sens. Kamala Harris (D-CA) and Elizabeth Warren (D-MA), Rep. Pramila Jayapal (D-WA), and other women they believe will support their cause. In July, Harris and Jayapal introduced the National Domestic Workers Bill of Rights.

The legislation would essentially amend federal labor laws to include domestic workers. But it would also extend new benefits to them, such as guaranteed paid time off, privacy protection, and a written employment contract.

Republicans have long resisted laws extending labor rights to workers, so the bill has little chance of passing the GOP-controlled Senate, but domestic workers have momentum on their side with successes at the state level.

New Mexico became the ninth state to pass a domestic workers bill of rights law earlier this year, requiring employers to pay all caregivers the minimum wage and overtime. The law also protects workers like Angelica against sexual harassment and discrimination.

During my visit, Angelica told me she planned to file an official report about the masturbation incident with her last client. Now she is entitled to overtime pay too.

Despite all the drawbacks, Angelica is surprisingly happy doing her job. (She even remained cheerful after her shift, when her car broke down for good.) She says it’s the best job she’s ever had because she loves talking to people, and she feels particularly invested in it as part-owner of the co-op.

The low pay is hard, she explained as she defrosted hamburger meat to prepare for her client, but other things can upset her more. Like saying goodbye.

One of the women she took care of recently died, and it was tough on Angelica.

“They didn’t even invite me to her funeral,” she said.

Angelica will soon say goodbye again. Her client, the widow, is moving back to New Jersey in August to live with her son. She spent the morning on the phone scheduling time for the movers to come. Angelica has been helping her pack.

“I’m really going to miss you,” Angelica told her.

Her client sat silently, staring at her address book. She didn’t even look up.

This story has been updated to clarify that home care workers have collective bargaining rights in some cases.

CREDITS

Editor: Jessica Machado

Visuals editor: Kainaz Amaria

Designers: Amanda Northrop

Copy editors: Tanya Pai and Tim Williams

Cover designer and graphics: Javier Zarracina

Additional reporting: Adria Malcolm