Home Care in Crisis

In most industries, it’s not catastrophic when an employee doesn’t show up to work. But last December, a few weeks before Christmas, my mother’s long-time home health aide announced that she had to go on indefinite leave, which left my family reeling. That’s becoming an all-too-common story thanks to a growing shortage of home care workers, a problem that raises thorny issues of who’s able to unionize and which jobs — and which workers — we value.

I was 7 when my mother, a high school English teacher in upstate New York, was diagnosed with multiple sclerosis (MS). Over the next several decades, MS progressively robbed her of many of the things she loved. First her stamina and ability to tolerate hot summers; later her balance and her pride, as strangers assumed her staggering walk meant she was drunk. When I was in middle school, MS forced my mom out of her teaching career, and by the time I graduated from college, it had relegated her to a wheelchair.

My mother’s initial diagnosis was of a type of MS called relapsing-remitting, marked by periodic flare-ups that came on as mysteriously as they retreated, but which took something with them each time they left. More than once, the disease threatened to separate our family, as doctors suggested that she needed to be cared for in a nursing home. But eventually, the disease seemed to plateau, leaving my mother at a relatively stable level of disability. That plateau is where my parents have lived their lives for most of the last decade, following a carefully planned routine of meals and exercises, wheelchair transfers and naps, and contending with a series of complications, predictable only in that there’s always something new. It’s an almost impossible balance, and one that depends heavily on the two hours of daily support they receive from their home health aide, a gruff but capable woman I’ll call Shirley.

Six days a week, Shirley helps my mother with everything from bathing and dressing to stretching and exercises to organizational projects around the house, which also gives my father a two-hour reprieve to run errands and take his daily walk. But while my parents are in their early 60s, Shirley is a few years older still. And in December of 2013, Shirley announced that it would be her last day for the foreseeable future, while she attended to personal family issues of her own. When my father called to tell me, it was like the air had gone out of him. He and my mother knew, from previous experience, what the next few months would bring: a rotation of new aides, unfamiliar with my mother’s condition and liable to find her case too difficult to stay on. In their small, rural town, trained health aides are already few and far between, and can consequently be selective about their caseload, choosing between able-bodied senior citizens who just need help going to the grocery store and more intensive cases assisting those with severe disabilities. My mother’s care is undoubtedly one of the harder jobs.

Over the next two and a half months, several new aides came through, but none stayed full time. In the end, the local agency was only able to replace four of the 12 hours per week that were medically prescribed for my mother’s care. The agency was apologetic, but at a loss — too short on staff to cover not just my mother’s missing eight hours, but a total of 200 hours prescribed to patients across the three-town rural area it serves, likely affecting dozens of families. It wasn’t just them, the agency explained, but rather a problem that’s happening nationwide, particularly outside cities, as the demand for home healthcare outstrips the number of people able or willing to do the work.

​‘Consistency of care’

The reasons for the shortage are clear enough. Home care aides have a hard job. Not just physically taxing, it’s often messy and potentially dangerous, with risk of injury from helping lift clients or infection from body fluids. And though it’s considered unskilled work, aides walk a complicated line. Their workplaces are also their clients’ homes, turning the worker into a guest, and demanding that all parties possess the interpersonal skills to accommodate everyone’s changeable roles.

But what makes this hard job too often a bad job is the disrespect the workers receive — sometimes from their clients, but most often from the system. There’s little room for advancement, leaving workers stagnating in entry-level positions, sometimes for decades. And of course, home health and personal aides are so famously underpaid that many teeter on the poverty line and rely on government assistance to supplement low wages.

That’s partly thanks to the gendered nature of the work: a form of low-skilled labor that takes place inside the home and is thought of as women’s work — fit to be compensated in platitudes rather than a living wage.

It’s also due to racism. Along with agricultural workers, domestic workers were deliberately excluded from New Deal minimum-wage and overtime laws, as a sop to Southern senators who wanted to keep the mostly African-American workers in a state of semi-slavery. When Congress extended minimum-wage and overtime protections to some domestic workers in 1974, many home care workers were again excluded, under an exemption that treats them as ​“companions.” It was only last year that President Obama issued an executive order extending these protections to home care workers beginning in 2015 — and the administration has now delayed implementation for six months, until June 2015.

Yet that measure is only the bare minimum, says Sheila Bapat, author of Part of the Family? Nannies, House-keepers, Caregivers and the Battle for Domestic Workers’ Rights. ​“Obama’s regulations are radical in the face of the history of racist exclusion, but they are also so basic — they just bring home care workers up to the current pay floor. There are so many factors beyond take-home pay: control over schedules, fringe benefits like health-care, your boss or your client’s regard for you, paid time off, and more.”

Today, the home care workforce looks in many ways like it has for a century: 90 percent women and 56 percent people of color. Many are recent immigrants, and most are middle-aged or older, with workers aging alongside their clients.

The difficulty of the work and the systemic disrespect has led to high turnover and low recruitment. The shortage already experienced in rural areas like upstate New York is a sign of things to come nationwide. While urban areas may still have a large enough population of poor women and immigrant workers willing to take on the jobs others refuse, even cities are set to face a critical home care worker shortage soon. Aging Baby Boomers overwhelmingly want to remain at home, and states and insurance payers recognize that home care is more cost-effective than exorbitantly expensive nursing institutions. The Bureau of Labor Statistics has predicted that there will be a 48 percent increase in national demand for home nursing and personal assistants by 2022, even as the current workers continue aging out of their jobs.

That makes home healthcare a growing industry, everyone agrees, but it’s one that comes with a catch for industry leaders. Unlike many other low-skilled service-sector jobs, where workers are treated as disposable, the key to providing good home health services is what the industry calls ​“consistency of care.” From the perspective of consumer-patients, home care only works well when they can rely on having the same high-quality worker stay with them for years.

The general solution that economists and healthcare professionals recognize seems simple: To attract and keep more workers in positions that are known as bad jobs, they have to make those jobs better. And that realization has led to an unusual situation, where many workers, employers, clients and payers are all striving for the same goal.

After Harris v. Quinn

This June, the Supreme Court weighed in on the efforts of one state to do just that. In the face of extremely high turnover and shortages in some areas, Illinois wanted to figure out how to make its home care workforce more sustainable. The issues were predictable: Workers were badly paid, often poorly trained, and sometimes lacked the most basic supplies, such as gloves.

But the state was faced with a problem. Home care workers are, almost by definition, an isolated and disconnected workforce, with each employee working in someone else’s home, rarely coming together in a common office or shop.

“There’s a whole range of patients, a whole range of scenarios, and different types of training,” explains Moshe Marvit, a fellow at the Century Foundation and co-author of Why Labor Organizing Should be a Civil Right: Rebuilding a Middle-Class Democracy by Enhancing Worker Voice. ​“Figuring out how to manage that workforce is extraordinarily tough.” Rather than reinvent the wheel, Illinois turned to the union model, defining home care workers as public employees for the sole purpose of organizing them in a public sector union.

“The state saw the union as offloading that pressure — let the representatives gather that information and report to the state, and figure out how to make this work,” Marvit says. ​“It was a win-win: Patients got care, there were regulations in place, and the state doesn’t have to bargain with 60,000 workers, but can instead bargain with one union.”

The model was adopted by 20 other states, becoming a rare situation, Marvit says, ​“where the employee, the employer and the client all had the same solution.” But then, ​“It was scuttled by the conservative view of the market.”

In 2011, the anti-union National Right to Work Foundation took reflexive aim at the Illinois model, arguing that the home care workers weren’t true public employees and therefore shouldn’t have to pay membership fees to cover the costs of union representation. The complaint made its way to the Supreme Court as Harris v. Quinn. The court ruled against Illinois, critically threatening the financial survival of unions by allowing ​“free riders”: workers who benefit from union negotiations but don’t pay for their share of its services. The case likely foreshadows a number of broader anti-union lawsuits to come, attacking teachers and other public sector unions, but its impact was immediately felt by home care workers, who have only recently begun to win improved workplace conditions.

To critics like journalist Kathleen Geier, a public policy researcher who focuses on women’s economic equality, writing at The Nation, it was an example of conservative justices under-cutting the progress of a marginalized, female workforce: ​“structur[ing] care work in a way that ensures the continuing economic inequality of those who perform it.”

In the wake of the decision, there has been intense discussion about how home care workers should move forward. Some states have floated the possibility of state-run commissioner boards that would function as a government-funded union for the purpose of organizing home care workers. But some advocates are looking to a more radical model already working in a few corners of the country.