The Need for and the Needs of the Direct Care Workforce

As has been noted in these pages repeatedly, the world of long-term services and supports (LTSS) occupies an especially precarious position in American social policy. Along at least three dimensions, it can be seen as a residual world: LTSS addresses vulnerable and often devalued populations, the nature of complexity of chronic illness renders it less attractive to providers than more acute health care needs, and when LTSS is addressed by public policy it is most often through a means-tested and selective public assistance program, Medicaid. Very much caught up in and harmed by this toxic environment are those who do the most demanding work within it: the LTSS direct care workforce. After decades of neglect, much attention has recently been focused on these hands-on workers, who provide the lion’s share of chronic care, serve as eyes and ears to inform and alert kin and other providers, and offer a window to the outside to the individuals to whom they provide care. That the social and health care system and the larger society seem to repeatedly undervalue these contributions is seen in the status and circumstances of these workers: low wages, insecure employment, poor working conditions, lack of respect, and high stress. As a correlate if not a cause, this workforce is comprised largely of women, people of color, and immigrants or first-generation Americans. Given the place of the LTSS population, problem, and policy in the U.S., this being the case should come as no surprise, but is very much in need of remedy. This issue of PP&AR addresses the issues, challenges, and needs of the LTSS direct care workforce. Each of the authors here have devoted enormous time and effort toward improving the status and wellbeing of these workers, recommending steps that would improve their working conditions, heighten the quality of the services that they render, and more closely integrate them into the wider allied health and social systems that comprise the LTSS policy world. Ai-jen Poo and Josephine Kalipeni open the issue by framing the LTSS challenge and the place of the direct care workforce. Most broadly, they note that the consumer-driven world of the post–World War II Baby Boomers has today morphed into a service-driven world, one where an aging older population will need the same volume but a very different mix of attention: LTSS services rather than cars and refrigerators. They also reference an often ignored policy legacy, wherein Southern Congressmen pressed for public assistance programs giving states the ability to limit or cut benefits through broad administrative discretion. At least partially as a result of these macro-level developments, today’s LTSS world finds workers with low wages, few fringe benefits, unstable hours, and few opportunities for advancement. The authors recommend a series of steps under the rubric of recruitment and retention that would improve this situation, and go on to call for a program of universal—not selective—family and LTSS benefits Heidi Hartmann and Jeffrey Hayes document the myriad barriers facing the LTSS workforce. Three-quarters of workers earn less than $15 per hour (yet almost half of these workers have high school or more education), and fewer than half have health insurance. Workers are disproportionately of color and are overwhelmingly female, with personal and home care aides and nursing, psychiatric, and home health aides having much in common with other low-wage female occupations. As well, the direct care workforce is itself aging, with 43% of workers over the age of 50. Hartmann and Hayes highlight the expected growth of 1.7 million direct care jobs over the next decade, but importantly note that there is little evidence that increasing demand for direct care workers has or will result in higher wages. So much for Economics 101. They conclude with an appraisal of the especially harsh world foreign-born LTSS workers are facing in the current political environment. With English language and educational limitations often in play, these workers are exposed to high levels of abuse and an increasingly vulnerable legal status. Robyn Stone, a longtime observer of and participant in the LTSS world, sets her eyes on addressing the recruitment and retention dilemmas that undermine and threaten the LTSS world. There are currently 4.4 million direct care workers and that must rise by a million or so new recruits to meet expected demand. Toward that end, Stone itemizes the steps that must be taken. Improved compensation heads the list; the average annual wage for nursing assistants today is $18,700, and $13,400 for personal care workers. But pay is not enough; to retain workers, there must be greater recognition of the work that they do. And it extends beyond immediate hands-on care to an appreciation of direct care workers as the eyes and ears of the LTSS system: workers see and can anticipate client problems before they arise, alerting physicians, nurses, and family members of issues soon to be seen on the horizon. High quality (and regulated) training is needed both to improve patient care and worker mobility. As well, more people are needed to “train the trainers” and more and better qualified supervisors need to be in place to support workers. Finally, in addition to these challenges intrinsic to the LTSS arena, larger economic forces in the form of employment alternatives in a growing economy are making LTSS worker recruitment and retention that much more difficult. Robert Espinoza focuses directly on policy and training as means for furthering the prospects of direct care workers. He notes that while home health aides are federally required to undergo 75 hours of training, this standard falls short of the 120 hours recommended by the National Academy of Medicine, and there is no federal training requirement for personal care aides. Moreover, research conducted by his organization, PRI, found that the didactic methods often employed in training programs do not constitute best practices for working with the learning styles of a low literacy workforce. Espinoza cites two demonstration projects that suggest a way forward: PHCAST (Personal and Home Care Aide Demonstration), which reduced attrition and increased morale across six states, and an 18 month intervention in New York City, where clients of aides who had had advanced training had 10% fewer emergency room visits than aides without such training. And, as do all of the authors here, Espinoza argues that we must convince policymakers that, beyond the provision of direct care itself, quality care provision can anticipate problems, improve client circumstances, and reduce health care costs. The recent and ongoing growth in demand for long-term services and supports has brought paradigm-challenging entrants into the LTSS world. The degree to which the technology and business arrangements associated with so-called “on-demand” enterprises represents a challenge or an opportunity to long-term service provisions is addressed by the final two articles in this issue. Walter Dawson speaks to the potentially transformative development to LTSS seen in the growing presence of on-demand case management and services. The on-demand economy is one where “economic activities are centered around online platforms, where independent sellers offer goods and services to consumers.” Honor.com and other entrepreneurs are entering the LTSS world, and they are able to do so as elders are increasingly involved in the digital world: 7 of 10 elders are now using the internet, and 42% of them have a smartphone. There are wide variations by education and income but the age-related digital footprint is expanding inexorably. Dawson reports the case of “Mary,” whose health is monitored by a physician, who speaks to providers by phone, and who can text with her caregiver. Online LTSS raises important policy questions around quality, regulation, reimbursement, monitoring, and licensure, among others, but in the face of worker shortages (and perhaps worker shortcomings), there is clear potential for online intervention to make a positive contribution. Dawson is clear that there are larger underlying issues confronting LTSS care provision, but online interventions can contribute to higher quality and lower costs if properly developed. Pamela Doty provides an up-to-date assessment of these new models of service delivery and their potential to be truly disruptive. They represent a distinct new wave of players beyond nursing and assisted living facilities and Medicare- and Medicaid-certified home health agencies. Doty addresses three trends: the rise of non-medical home care agencies, the new variants of the home care agency delivery model, and the rise of online referral services. Between 2009 and 2014, there has been a 53% growth in private duty home care agencies, some of which are independent and some of which are franchised. Importantly, roughly 70% of revenues are private pay, with private long-term care insurance and Medicaid waiver programs each constituting roughly another 10%. Their delivery models are much like existing home care agencies, and they face the same worker shortage challenges of those agencies. But their growth does point to the often under-recognized significance of private-pay long-term care services. Doty reviews the goals and experiences of three of the new disruptive care delivery agencies: Hometeam, Honor, and HomeHero. Beyond the availability of online technology, these new models developed from client dissatisfaction with traditional agency services and the personal experiences of at least two of the founders with assisting their own parents and grandparents. These ventures had different strategies and successes, but the accounts of the three provide a clear insight into how venture capital, entrepreneurship, and technology may alter the LTSS world as we have known it. Of particular importance to the entities, their clients, and especially their workers is whether the formal status of workers is that of employees or independent contractors. The interests of entrepreneur and worker are very different here—and so may be the interests of clients. As well, there are critical compliance issues associated with a 2013 ruling under the Fair Labor Standards Act. Doty lays out the issues and shifting resolutions in clear fashion. The rise of independent provider registries is a third key trend. These new registries cater primarily to private pay clients, often having them opening up accounts, with associated fees allowing access to caregivers or posting a job on the site. These can be compared to online dating sites, though they often have stronger screening mechanisms in place. Doty questions some of the alarms that have been raised about these developments. She does not see a dire pattern of “Uber-ization” unfolding, and workers are increasingly gaining status as employees (with benefits) rather than as contractors. At least anecdotal evidence suggests that treating workers well may result in less worker turnover and heightened consumer satisfaction. To the concern that these new model agencies may place clients at higher risk, Doty notes that Honor.com and a short-lived HomeHero.com voluntarily imposed higher pre-screening standards on their workers (employees or contractors) than required by state licensure. All of this said, Doty concludes that the differences between most private duty home care agencies and the new model agencies seem more incremental than transformational, but that the new registries may represent more of a paradigm shift. Yet, using a wider lens still, she contends that these models will never be truly game changing “until within a person-centered context of integrated medical and long-term care, front-line workers interact as team members with their clients’ medical care providers (managed care plans or accountable care organizations).” The demand for integrated LTSS is growing, and the need for high-quality and well-rewarded workers is growing as well. Hopefully, strategies and options such as those suggested in these pages will lead to both quantitative and qualitative improvements in the LTSS universe.