The American Care Landscape: Challenges and Solutions for the 21st Century

Category:

This article originally appeared in the Oxford Academic Public Policy and Aging Report. Read it there

 

When my father passed away, I moved in with my mother. A few years later, she was diagnosed with Vascular Dementia and Alzheimer’s. It was my turn to provide care for her.

Between appointments, finding day care, and adjusting to the diagnoses, it was hard not to feel overwhelmed. So I took vacation hours and asked my boss if I could reduce my hours to 30. Of course, fewer hours meant less pay.

Finding quality care was very important. We found an excellent program, but it cost $70 per day. With my reduced hours at work, this was a strain—but we had to keep her safe and well cared for. I put off paying down my student debt or saving any money. Less than a year later, I was laid off.

Since then, I could only take part-time jobs since she needs around-the-clock care. In 2011, I found a 30 hour job. I was so excited! Less than a year later, my mom had a bad fall. I took off a week from work but quickly realized that recovery was going to take longer than my vacation leave. We were lucky that my mom had some savings so that we could hire a caregiver to help during this time of crisis. We were also lucky that we were able to find the help we needed. But this shouldn’t be based on luck—all of us should have the peace of mind that when needed, we can hire some help.

This time with my mother is a gift. But it’s a gift that comes with a tremendous burden.

(Darlene Rodrigues, Hawaii)

After World War II, America experienced an unprecedented population explosion known as the Baby Boom, a demographic shift that catalyzed major social, economic, and political changes. Legislation was enacted to transition from a wartime to peacetime economy, with federal job training, education, health care, and home-buying assistance programs offered to former military. Suburban development of single-family homes accommodated the new trend of larger families, and more schools were built. A robust economy meant a higher emphasis on consumer goods, which expanded employment opportunities. These solutions created the resources needed for the majority of Americans to enjoy a respectable quality of life.

Led by the Baby Boom generation, we are now a population reaching an age that will require the same level of commitment to adapting to the times and investing resources to meet our country’s new needs. Our challenges are different in 2017, but we can build on the momentum started by the Baby Boom, and with a spirit of innovation, create the resources needed for a country whose people are living longer lives. With the right policies and infrastructure in place, older Americans can live and thrive, comfortably connected to their communities and their families during these years.

This paper outlines the current challenges facing working families and the direct care workforce we’re counting on to support them and concludes with promising solutions towards creating the caregiving infrastructure that can carry us into the future with peace of mind and security.

21st-Century Challenges and Opportunities in Caregiving

More and more older adults are aging without family nearby to assist in their care. This and the increased numbers of women in the workforce means that a skilled and professional caregiving workforce will be critical to ensuring older adults can live with dignity. In fact, direct care work is the fastest growing workforce in this country, with home care workers providing 70 to 80% of all paid, direct care (Kahn et al., 2015). A combination of policies and practices have created a highly unstable environment for the workforce. From poverty wages to lack of training or standards for training, we are undermining the strength and vitality of this workforce and therefore, the health and well-being of our families.

Low wages represent a fundamental challenge to sustaining a quality workforce in home care. The annual median income for a home care worker in this country is $13,000 a year, not enough to support an individual, let alone a family (Kahn et al., 2015). It should come as no surprise that a majority of home care workers must rely on public programs, like Medicaid and housing subsidies, to meet their own needs. The economic stability of care workers is further threatened because the available work hours can fluctuate from full-time to part-time depending mostly on public funding and the needs of the person receiving care. Low wages also cause high turnover of providers in work that depends on trusted relationships.

The care workforce is often left unprotected, with a lack of adequate employer-offered benefits, including health insurance, paid leave, and retirement options. The industry’s low wages mean that home care workers are also often unable to purchase these benefits for themselves in the private market.

Home care workers are often locked into a set of tasks limited by scope of practice laws, which have also blocked pathways for career advancement or mobility. Contributing to this challenge is a lack of accessible and affordable specialty training, which would allow workers to develop specializations and expertise to provide care across populations with different needs. Currently, home care training cannot be translated into credits for other health care–related work and certifications. The experience, passion, and ability of home care workers could be easily harnessed toward more advanced roles, enabling them to offer better quality care and develop their skills for related career paths.

Transforming Inequities into Quality

The challenges the caregiving workforce faces in America today are shaped and intensified by deeper social inequities. The value, protections, and status we assign to care work is directly related to who does the work. We have arrived at the current reality after a long history of racial- and gender-based exclusion and discrimination in our economy.

Historically, care work has been associated with women and the responsibilities of maintaining a home. Still today, women make up 89% of the care workforce, and more than half are women of color (Kahn et al., 2015). Caregiving continues to be viewed as unskilled work that happens in the privacy of people’s homes, rather than highly professional work. Low wages, lack of benefits, exploitation, and economic instability also reflect a holdover from this workforce’s exclusion from basic labor standards created as part of the New Deal by Southern legislators, whose goal was to prevent black workers from gaining worker protections. It took more than 75 years to include care workers under the labor protections mandating a wage floor and overtime pay—protections that every other American worker has long enjoyed.

Today, these inequities are further exacerbated by federal threats to the Affordable Care Act, Medicaid, and Medicare that would undermine wages for care workers, cap service hours, lower already insufficient reimbursements rates, and pass the costs currently shared by the federal government onto home care consumers and workers. A third of care workers are covered by public insurance programs, while a quarter of workers have no health coverage at all (Kahn et al., 2015). Cutting funding to these critical programs that both pay workers and provide health care and other benefits will only deepen the challenges experienced by this workforce.

The future of the caregiving workforce is also intimately linked with the fate and treatment of immigrant workers. Currently, one in four care workers is an immigrant (Kahn et al., 2015). As the demand for care grows faster than the population of U.S.-born workers, immigrant workers will continue to play an important role in filling labor shortages in the home care industry. But despite their importance, immigrant workers, particularly those who are undocumented, face threats from discrimination, exploitation, increased mass deportations, the backlog in processing visas, the inadequate numbers of visas approved for immigrant women, delays in authorizing work permits, and the lack of a pathway to citizenship. Immigrant women also earn significantly less than any other demographic, and undocumented workers are excluded from access to public benefits like health care and affordable housing.

There are two additional often under-acknowledged challenges that have long-lasting impacts and need to be considered as part of any comprehensive solution regarding this critical workforce:

  1. Workers themselves are aging. Given the strenuous nature of their work, inadequate wages they are paid, and the widespread lack of employer-based benefits, they are likely aging into poverty and aging sicker.
  2. Care workers are also likely members of the sandwich generation, providing unpaid care to their own children and aging family members at the same time that they care for others through paid employment. Sandwich generation care workers are doing the tightrope balance of stretching poverty wages to pay for childcare while caring for a loved one.

All of these challenges combined lead to economic instability and constant and rapid turnover in the industry. Poverty wages in particular force workers to leave the workforce in higher numbers than those in other fields, as they are unable to support themselves and their own families on such low wages. These challenges create constant difficulties in attracting qualified workers to fill open positions and, if left unaddressed, will make it more difficult to recruit the care workforce we will need as our population of older adults grows.

Shortages in the workforce have a far-reaching ripple effect, impacting families as well as state budgets. When reliable workers are not available, family members themselves fill in the gap by providing the care their loved ones need, often reducing their own work hours or leaving the workforce altogether in order to do so. The financial consequences can be steep, resulting in as much as $300,000 in lost lifetime wages for women as well as reduced retirement security due to the concomitant reductions in Social Security earnings (MetLife, 2011). States, too, often need to bear the higher costs of facility-based care when affordable home care is not available to help families care for their loved ones at home.

As it stands, seven out of ten Americans will need long-term supports and services at some point in their lives due to disability or the aging process (Kalipeni, 2016). While a nursing home or assisted-living facility may be the appropriate and desired choice for some, more than 90% of Americans prefer to receive care in their homes and communities for as long as possible (Kalipeni, 2016). This trend is driving demand for home care workers. Unless we address the challenges that make it difficult to recruit and retain skilled workers, there will continue to be an acute labor shortage that will make it difficult to satisfy the wishes of older Americans.

Our current social safety net is outdated, created in a time when older adults made up a much smaller percentage of the U.S. population. It does not take into account the long-term care needs of today’s families. The combined challenges described above often lead families into the confusing maze of public and private programs and affordable services, forcing them to piece together a care plan they can afford while working. Individuals and families in the United States who do not qualify for Medicaid yet cannot afford out-of-pocket care are left with limited options. Medicare covers very limited long-term care services. While home- and community-based services save families money, state budget cuts and federal threats to funding are leading to decreased services and access to care, at a time when demand is growing rapidly (Kalipeni, 2016). These threats also mean costs will be passed on to individuals, making dignified care inaccessible and unaffordable for the vast majority of Americans.

A Stronger Workforce for Stronger Families and a Stronger Economy

We are in a situation where neither the care workforce nor the individuals and families who depend on those workers are receiving the support they need to live with dignity. While the roadblocks to building the care infrastructure we need now and in the future may seem daunting, our own country’s history in creating the foundational programs that many of us rely on today, in particular the creation of Social Security, Medicare, and Medicaid, can provide us a roadmap as well as inspiration. If we were to build the care infrastructure we want and need, what would it look like?

We need comprehensive federal and state policy solutions that address all of the challenges we face today—affordability, choice, quality of care, and quality of care jobs. The development of policy solutions to transform care jobs into the good jobs of the twenty-first century must begin with meaningful input from workers. One way to ensure this is to develop vehicles that allow care workers to organize together and bargain collectively.

Additional components of any policy must include recruitment and retention plans for the workforce and a path to citizenship for immigrant care workers—all with consumers and family caregivers in mind. In today’s political climate, states have taken the lead on creating bold policy solutions to meet the needs of their residents, and states play a critical role as laboratories of innovation; they should and will lead the way on building the care infrastructure we need.

The fastest growing jobs in this country, the ones that are critical to how we care for our families, ought to pay enough to attracting workers and creating economic stability. To increase wages and economic security, counties and states should set a living wage floor that increases with inflation and takes into account the cost of living. To address wages in publicly funded programs, states should increase the current low reimbursement rates for workers providing care through Medicaid and Medicare and develop transparency requirements that track costs of care to consumers and worker wages.

In addition to existing Medicaid and Medicare training requirements, states should also develop career mobility and advancement programs. Accessible career lattices that offer home care workers training in core competencies and advanced, specialized topics will lead to better care, higher wages, and increased retention of skilled workers.

Caring Across Generations is working with state and national partners to advance state policy solutions that better utilize funds already committed to care and to establish new revenue streams to support paid and unpaid caregivers and consumers alike. Two such fully financed and sustainable state-based solutions that Caring Across is developing are:

  • A universal long-term care benefits model and;
  • Universal Family Care (UFC).

UFC is a state-level benefit that would enable families to access affordable, quality child care, paid leave, and home care for people with disabilities and older adults (Kalipeni, 2016). UFC would create a care infrastructure that increases access to affordable care, alleviates the pressures of family caregiving, and supports the needed workforce while delaying or eliminating the need for reliance on Medicaid. Advocates have worked tirelessly for years to improve child care in America, fight for paid family leave, call for support for people with disabilities, and prepare for America’s aging population. Given that many families are simultaneously experiencing these compounded challenges (i.e., caring for young children as well as older adults in their families), UFC’s comprehensive and multi-pronged approach would address the systemic problems that prevent individuals across the age spectrum from accessing the care they need.

Conclusion

Aging, healing, and living at home for as long as possible for millions of older adults and people with disabilities happens because of the combined work of family and paid caregivers. Family caregivers and home care workers are the backbone of our in-home, long-term services and supports system. Yet our current model is unsustainable. Today, the bulk of the provision of day-to-day long-term services and supports is falling on uncompensated family members, while the jobs in the workforce we desperately need are of such low quality that recruitment and retention are some of the many barriers to developing the system we want and need. One of the most important steps we can—and must—take in creating a twenty-first century, family-centered caregiving system is to address the question of how we can better support care at any age and at every stage of life. We must invest now in elder care, child care, and paid leave for all.

All of us have been, are, or will be impacted by the need for caregiving, either for ourselves or a loved one. If we invest in good public policy, the benefits of affordable quality care do not have to come at the expense of workers. We do not have to believe in the false idea of scarcity. Instead, we can proclaim a path forward that can provide shared stability for all. Care workers provide the daily support that children, older Americans, and people with disabilities need to remain independent and healthy, and to live at home with dignity. Care workers do the work that makes all other work possible. Today, we have a real opportunity to envision a new, sustainable care infrastructure that meets the needs of everyone—children, older adults, people with disabilities, family caregivers, and the professional care workforce that supports them all.