For eight hours a day, five days a week, Mark, a home health aide in New York City, cared for a deaf man in his mid-80s with persistent leg wounds. Mark communicated with doctors on the man's behalf, visited the man every day at rehab after a brief hospitalization, alerted doctors to the man's undiagnosed anxiety disorder, and spent hours painstakingly wrapping gauze around the man's leg, tending to the wounds.
In the coming decades, as the enormous Baby Boomer generation retires, there will be more and more people like Mark's patient, people who need assistance with the day-to-day activities of their lives. In 2015, almost 14 million people over the age of 65 reported difficulties living independently. That number is projected to double over the next 25 years. At the same time, the American economy is currently characterized by skyrocketing income inequality and a persistent lack of middle-class jobs, a so-called "hollowing out" of the American workforce that many blame for the surprising outcome of the 2016 election.
For Paul Osterman, a human resources professor at the Massachusetts Institute of Technology, stories like Mark's illustrate the need to re-think the role of home health aides. In his new book, Who Will Care for Us? Long-Term Care and the Long-Term Workforce, Osterman lays out his belief that the home health aide profession at large might help alleviate the impending shortage in long-term care and our country's current income inequality crisis. The idea at the heart of Osterman's work is simple: What if, instead of relying on a veritable army of low-paid, low-skilled workers to care for elderly Americans in their homes, we started training, treating, and paying men and women like Mark as true professionals worthy of middle-class wages?
Spurred largely by demographic trends, the long-term care industry has been growing for quite some time now. Much of this growth has been concentrated in the community-based care industry, which provides services allowing the elderly to remain in their homes and communities, an outcome viewed as desirable by both policymakers (it's more cost-effective) and patients (who overwhelmingly prefer to age at home). The Affordable Care Act, for example, included a number of provisions meant to increase the availability of community-based services. Between 2010 and 2016, employment in the home health-care services industry increased by 29 percent.
The size of the long-term care industry in America sits at around $310 billion, and the vast majority—72 percent—of these costs were borne by publicly funded programs, with Medicaid being the dominant payer. In 2014, Medicaid paid for home care for 3.2 million people, and the category accounts for 51 percent of Medicaid spending. Despite all that spending, there's never quite enough to go around: In 2014, 582,000 people in 39 states were on waitlists for home and community-based care services.
Most elderly and disabled Americans who need assistance with day-to-day living rely on unpaid family members. Osterman estimates there are about 20 million unpaid family members helping relatives in some capacity,but many others rely on paid assistance. In 2015, there were 2.2 million home health-care aides working above the table and an unknown number working in the "gray market." (There were also 1.3 million Certified Nursing Assistants in this country in 2015, working mostly in nursing homes.)
Home health aides are disproportionately likely to be female (88 percent), black or Hispanic (28.3 percent and 19.5 percent, respectively), immigrants (26.7 percent), and lacking a college degree. Their wages are, by and large, dismal. In 2015, median annual earnings for home health aides were $15,019.
Despite the fact that they are undoubtedly the care providers who spend the most time with patients, home health aides are also often viewed with derision by other health-care professionals—a central examination of Osterman's. His book is filled with stories of home care aides like Mark who've made genuine differences in the lives of their patients; yet many in the industry view them as nothing more than glorified babysitters, incapable of administering medicine or communicating with a care team on patient's behalf. The chief executive officer of one home care agency, for example, when discussing a scope of practice law forbidding aides from administering eyedrops to patients, told Osterman that "I'm not sure the limitation is a bad idea. What if they put in the cat's eyedrops instead of the client's?"
(There are a few notable exceptions to this viewpoint. The Mt. Sinai Visiting Doctors Program, for example, incorporates home care aides into their team care model and trains them to help patients in a variety of ways and communicate with doctors and nurses as needed.)
The profession's origins no doubt drive much of this attitude. The role actually dates back to the New Deal-era visiting housekeeping programs, which provided domestic employment for low-income, predominately African-American women. "The employment of home care aides was viewed as a form of workfare: providing jobs to poor women who would otherwise simply collect welfare," Osterman writes in the book. "Home care aides were poor women who needed work, and the work they were given was taking care of the elderly poor." Until recently, the profession wasn't even covered by the Fair Labor Standards Act.
All of these drawbacks—the low wages, limitations, and often poor treatment—don't exactly add up to a desirable profession. Which is a problem, as the country is going to need to attract a lot more people to the field in the coming years. Osterman projects that, given current demographic patterns, there will be a shortfall of 350,000 direct care workers by 2040.
Making the home health aide job a more desirable one would, of course, go a long way toward averting the coming shortfall. But one of the most tantalizing prospects Osterman raises is that increasing the skills and pay of home health aides would not only improve the quality of life of elderly and disabled Americans, but also reduce overall health-care spending, chiefly by reducing hospitalizations and emergency room visits among patients. There's a rather staggering lack of research on how home health aides affect outcomes (itself an indicator of the lack of attention paid to the profession by the larger medical establishment). The evidence that does exist, however, is promising. A small 2012 pilot program in California, for example, found that expanding the role of home health aides led to a decrease in medication non-compliance, fewer emergency room and hospital visits, and a decrease in the number of unhealthy days reported by patients.
What's more, the role that Osterman envisions for home health aides is one that's somewhat similar to that of a community health worker, health coach, or medical assistant. And there is a growing and encouraging body of evidence on the positive effects of utilizing these kinds of workers, particularly community health workers, on care teams. A randomized, controlled trial at the University of Pennsylvania, for example, found that patients that worked with community health workers (who are demographically similar to home health aides) were less likely to experience multiple re-admissions, exhibited greater improvements in mental health, and were more likely to get timely primary care.
So what, then, is the hold up? Why aren't more people talking or thinking about expanding the role of home health aides? Why haven't there been any bold experiments in this vein? Osterman attributes the lack of attention to the issue to a variety of factors. The attitudes toward the profession, of course. And then there's the turf war issue. Across the country, nurse unions have fought contentiously against any efforts to make even minor changes to the scope of practice rules for home health aides.
The complicated nature of the elderly health-care system presents another huge obstacle. Compensation for home care aides is currently determined by state Medicaid programs; convincing state politicians to increase compensation (and thus increase spending) is a tough sell. And while there is, as Osterman illustrates, possibly a strong economic argument for expanding the role of these aides, Medicaid programs have little incentive to experiment. While Medicaid covers the costs of most home care aides, acute care (i.e. hospitalizations) is covered by Medicare. So traditional Medicaid programs have little financial incentive to invest more in home health aides, since they wouldn't reap the financial benefits of fewer hospitalizations or emergency room visits.
These challenges aside, Osterman is hopeful that a change is coming. Home health aides have begun to organize more effectively. Two states—Minnesota and Massachusetts—have implemented integrated managed care programs in which insurers are paid a fixed rate for both Medicaid and Medicare services, a change that at least establishes the right financial incentives. And there are several integrated pilot experiments ongoing around the country, including several that specifically envision an expanded role for direct care workers.
But perhaps the biggest force for change is the sheer demographic tidal wave that's about to hit the long-term care world—and growing concerns about income inequality.
After all, it's not hard to imagine a scenario in which people like Mark's patient (and the children or relatives of that patient) might start to think that life would indeed be a little better if home health aides were trained and permitted to put in a patient's eyedrops, wrap their wounds, help them with nutrition plans, or communicate with the patient's medical team. And that Medicaid should pay home health aides like Mark a living wage for the valuable work that they do.
"The optimistic view about this is that the Baby Boomers are going to retire and need a lot of help," Osterman tells me. "And, secondly, there is a constituency for improving job quality in this country. So there's a political win for some leader to take up this issue. That's the hope, that large numbers of clients and workers would come together into a constituency."