The rapidly aging U.S. population, increased costs for long-term institutional care, and individual preferences for remaining at home have made home care services one of the fastest growing industries in the United States. Home care workers are paid caregivers who provide essential medical and nonmedical assistance to older or disabled clients, enabling them to remain in their homes. These services vary by type of worker and may include simple procedures, personal care services or routine housekeeping. Home care work is typically low paid, isolated, stressful, and hazardous. Workers often piece together part-time work for different clients and usually have few or no benefits. They may work for home care agencies or be hired directly by the client, although they are typically paid through Medicare/Medicaid funds. Regardless of payment mechanism, wages average less than $12 per hour. Studies have shown high rates of work-related illness and injury among this working population. Prior to 2015, they were explicitly excluded from federal wage and hour protections, and in many states they lack the ability to form unions. Furthermore, while workers report personal satisfaction and intrinsic meaning in their work, they also cite stressors such as exclusion from care plan decision making and lack of respect for their contributions. Policy interventions are urgently needed, including improved funding mechanisms to promote living wages with benefits, legislation to foster unionization, research to explore approaches to enhancing career pathways through enhanced service delivery, paid job training, and research examining cooperatives and other approaches to improving working conditions.
Relationship to Existing APHA Policy Statements
APHA has supported home-based care through a number of policy statements since 1953, including some that have been archived. For example, APHA Policy Statements 20068 (Resolution on the Right for Employee Free Choice to Form Unions) and 9204 (Labor Unions and Health) address labor perspectives across industries and occupations and apply to the long-term care workforce. In addition, APHA Policy Statements 9717 (In Support of Continued Access to Medicare Home Health Care through Prospective Reimbursement), 9005 (Need for Coverage of In Home and Community Based Long Term Care), and 8131(PP) (Toward a National Policy on Long Term Care for the Aging) , although not substantively focusing on the needs of the home care workforce, address the perspectives and needs of home care consumers or the existing payment mechanisms for home care. Only Policy Statement 200911 (Public Health’s Critical Role in Health Reform in the United States) references the home care worker shortage, and only Policy Statement 200014 (Protecting OSHA’s Jurisdiction over Home Workplaces) asserts the jurisdiction of the Occupational Safety and Health Administration over home workplaces.
Although Policy Statement 9005 references the “great emotional, physical, and economic cost to the caregivers and their family” of home care work and the need for “equitable reimbursement of long-term home care providers,” central themes involve home care consumers. This policy statement therefore fills a crucial gap.
Demand for home care is rising: The number of individuals needing long-term in-home care in the United States is rapidly increasing. By 2050, the number of adults older than 65 years is expected to nearly double from 48 million to 88 million, with many needing care as they age. According to one AARP study, 87% of adults 65 years and older prefer to stay in their current home and community. Currently, an estimated 575,000 more direct support professionals need to enter the workforce each year to meet the home care needs of people with intellectual or developmental disabilities and their families. That number is anticipated to grow annually through 2030. Factors such as population growth, increased life expectancy among individuals living with intellectual or developmental disabilities, and aging of those individuals’ family caretakers are all expected to contribute to growing demand.
Home care is often preferable to inpatient care: Every year, more than 3.3 million rehospitalizations occur in the United States, resulting in a cost of $41 billion. In the United States, the rate of hospital readmission among adults 65 years or older who are Medicare recipients is 24.8%, accounting for $15 billion in Medicare expenses. Quality home care is cost effective for taxpayers. Properly trained home care workers (HCWs) can care for these individuals at home, preventing the need for institutionalization and decreasing the risk for readmittance. Among older adults, the highest rates of hospital readmissions are seen in individuals taking multiple medications, those with significant declines in functioning, and those whose length of stay in a hospital is 13 days or longer.[5,6] HCWs are part of the health care team, and home health aides are able to assist patients with taking their drugs correctly, reducing the risks of inappropriate medication associated with hospitalization among older adults. Similarly, trained HCWs can assist patients in identifying minor, treatable symptoms following hospitalizations, which can prevent hospital readmission. Furthermore, home care is recognized as integral to the “quality of life, health and safety” of individuals living with intellectual or developmental disabilities.
Home care is one of the nation’s fastest-growing industries, yet pay, benefits, and working conditions for many workers remain exploitive: It is estimated that the home care field will add almost 1.2 million jobs in the next decade, with the workforce expected to grow by 36% between 2018 and 2028,[1,2] nearly four times the rate of total employment growth. This policy addresses direct care workers who provide support services in the home. HCWs have a wide range of occupational titles, including home health aides, personal care aides, home care aides, personal care attendants, direct care workers, homemakers, and nursing assistants, some of which require different training and entail different responsibilities. These workers are paid caregivers (mainly dispatched from agencies but sometimes employed in participant-directed care programs) who can provide medical and/or nonmedical assistance with daily tasks and also provide social support.[1,7] In response to the rising demand for home care, more than three quarters of states have named HCW recruitment and retention as a major policy issue. Currently, HCWs lack incentives to enter and remain in the workforce, contributing to an HCW shortage. Conservative estimates suggest turnover rates of one in three HCWs annually, with some studies reporting that half of workers leave the profession each year. The primary reasons for leaving are (1) insufficient rate of pay, (2) not enough paid hours, (3) lack of benefits, and (4) pursuit of better career opportunities. Rapid turnover among HCWs undermines quality of care for older individuals and individuals with disabilities while creating instability in the lives of caregivers.
The majority of HCWs are women (89%) and/or people of color (58%), and more than one quarter are immigrants (26%). The Fair Labor Standards Act (FLSA), which guarantees minimum wage and overtime pay, was passed in 1935 with the support of southern Democrats, but only after their insistence on the exclusion of agricultural workers and domestic workers to maintain Jim Crow practices in employment, practices rooted in slavery and socioeconomic control over people of color. HCWs remained excluded until 2015. While home care work is considered less expensive than institutionalization, this calculation is likely partially dependent on HCWs receiving low wages and few benefits. In addition, some common types of personal service provision (i.e., “companionship”) are still excluded from the FLSA. In 2018, HCWs’ median income was $11.57 per hour, or $24,060 per year. A 2016 study showed that HCWs earned about $1.00 per hour less than female workers across all 22 low-wage, female-dominated occupations, defined as occupations with 60% or more female incumbents. Nearly one quarter of HCWs live below the federal poverty line, and more than half rely on some sort of public assistance. In 2014, almost one in four HCWs were uninsured, despite the passage of the Affordable Care Act. With wages consistently below a living wage, HCWs’ economic vulnerability makes illness and injury more dangerous, as many do not have paid sick leave or earn enough money to take time off.[8,9]
Home care workers face challenges in work organization: Home care work imposes physical and emotional demands upon the workforce. HCWs often experience erratic and challenging schedules. Two thirds of HCWs work only part-time or part-year in response to clients’ changing needs. Care plans for clients are often interrupted by unpredictable hospitalizations, admissions to long-term care facilities, and deaths. Other common scheduling practices faced by workers include receiving schedules one day in advance of shifts, being required to work overnight or on weekends, and working split shifts. The isolation inherent to working in a private home reduces opportunities for supervisor support and for appropriate health and safety interventions. Although many home care workers find meaning and purpose in their work, they are often frustrated by their exclusion from care plan decisions and lack of training relevant to their daily challenges on the job, work plans that fail to address client needs, and/or uncompensated travel time between clients. Furthermore, HCWs frequently have to cope with the stress of caring for individuals who are older and struggling with disabilities, often without adequate training.[10,11] Home care work often involves bearing witness to the deterioration and death of the people HCWs serve, which can cause emotional and mental health strain.[12,13] Additional stressors may arise from family members who introduce hazards or additional task demands. Better attention to work organization within home care agency structures would mitigate these job-related strains.M
Home care workers experience high rates of illness and injury: The 2007 National Home Health Aide Survey showed that 18.5% of respondents had experienced one or more injuries in the preceding year. In addition, according to a study focusing on Washington State workers’ compensation claims from 2003 to 2007, HCWs filed 1,375 claims per 10,000 full-time equivalents (FTEs), as compared with 862 claims filed per 10,000 FTEs in other industries. Other large surveys of HCWs have identified occupational risk factors associated with neck, back, and shoulder musculoskeletal disorders and with depression.[16,17] Overextension injuries are common in home care settings due to factors such as improper workloads and postural strain. HCWs are exposed to blood-borne pathogens, infectious and communicable diseases, and community-associated microorganisms, including multidrug-resistant organisms that are often not identified or diagnosed in the home care setting. In addition, HCWs encounter unique hazards not present in the institutional setting such as aggressive household pets, pest infestation, neighborhood violence and drug activity, household chemicals, firearms, clutter, small working spaces for moving clients with impaired mobility, poorly maintained stairs, absent handrails, and icy walkways, as well as stressful interpersonal interactions, all in a setting that is isolated from coworkers and supervisors.[16,17,20]
Falls are a leading cause of both fatal and nonfatal traumatic injuries in the workplace and the leading cause of unintentional injuries in the home. In one survey, 12% of 741 HCWs reported a slip, trip, or fall in the previous year, with 58% reporting falling to the ground and 18% requiring medical attention. The rate of nonfatal assaults experienced by workers in the “healthcare and social assistance” industry in 2012 was 15.1 per 10,000 FTEs, as compared with 4.0 per 10,000 FTEs in the private sector as a whole. When violence occurs in isolated home settings, the consequences can be severe and even fatal. In a cross-sectional study of home care workers’ health outcomes, more than half of the 1,214 participants reported experiencing either verbal aggression or workplace violence. This exposure was associated with higher stress levels, a higher incidence of depressive symptoms, sleep problems, and burnout. HCWs face serious health effects from assaults, especially when they are working with patients with dementia or Alzheimer’s disease.
HCWs function as a part of the health care team: Under the supervision of nurse managers, HCWs carry out the orders of physicians, and while they value the caring relationships they develop with their clients, this can lead them to perform higher-risk tasks such as lifting patients without adequate equipment or going above and beyond their compensated work. Researchers have found, however, that HCWs have insightful solutions when they are given a voice. In a qualitative study, HCW focus groups described workplace risk factors for musculoskeletal disorders and identified problem-solving strategies to improve ergonomic conditions. HCWs rely on their behavioral insights, self-styled communication skills, and caring demeanor to navigate risks for musculoskeletal disorders and increase clients’ physical independence of movement. Such findings suggest that employer and government policies should seek HCWs’ input and acknowledge them as valued team members in long-term care. OSHA must create standards that engage workers in developing and enforcing worker safety and health protections.[26–32] Without clear action from OSHA, HCWs will continue to be at risk for infectious disease transmission (including coronavirus exposure) and will incur serious and disabling injuries and illnesses.[33,34]
Evidence-Based Strategies to Address the Problem
Advance workers’ health by promoting decent work for HCWs: Given that HCWs will continue to be in high demand, resolving deeply entrenched recruitment/retention issues is imperative. Strategies for improving overall job quality include raising wages, providing benefits, and improving work organization to reduce stressors and decrease short staffing. In addition, strategies must include steps to improve occupational safety and health, especially by establishing and enforcing an OSHA safety and health standard addressing HCWs. As in other industries, OSHA should implement specific standards for ergonomics (potentially modeled after New York State’s Safe Patient Handling Law) and workplace violence. In light of the coronavirus pandemic, OSHA should enact an emergency infectious disease standard similar to the one recently enacted in Virginia. Enriching job tasks and workers’ voices by providing relevant training, removing barriers to unions, and experimenting with worker-owned cooperatives is also needed to promote developmental work.
Increase and standardize federal and state training requirements: Standardized training requirements for HCWs benefit both consumers and caregivers. Personal and home care aide state training initiatives provide a rich set of exemplary training programs, as does SEIU Healthcare’s North West Training Partnership.[35,36] Better training programs will improve quality of care and worker retention while reducing hospitalizations, injuries, and medical costs.
Currently, however, policies regarding training requirements vary by state and type of HCW, reflecting a fragmented system. The National Academy of Medicine in 2008 recommended certifying home health aides and raising total training hours to 120. Implementing this recommendation, more than a decade old, with a dedicated federal funding source would improve care for consumers and increase worker retention. Federal funding is required to develop, implement, and evaluate the effectiveness of training interventions and to allow workers to be paid during training. Cost-effectiveness studies to assess reductions in long-term care placements or hospitalizations should be conducted to demonstrate costs and benefits.
Remove barriers to forming unions: APHA has articulated the public health benefits of workers’ rights to organize.[26–28] Failing to protect these rights undermines the safety and health of workers, contributes to wage suppression, and threatens health insurance coverage. Unions also improve societal public health by decreasing income disparities.[29,30] Unions protect the health of diverse workforces in many sectors. Nearly half (46%) of America’s 16 million unionized workers are women. Workers who identify as Black are more likely to be represented by a union (14.5%) than White workers (12.5%). Unions increase wages the most for workers earning the lowest wages, decreasing income disparities among women, people of color, and those with lower educational attainment.[29,31]
Income is strongly associated with quality of life and health outcomes.[30,32] Unions increase workers’ wages by approximately 20%, and after adding the value of other union-won benefits, such as health insurance, overall compensation increases by 28%. Unions also promote the enforcement of labor standards, such as standards involving wage violations, to which HCWs are vulnerable. A California study of more than 1,600 HCWs reported an average of 10.8 unpaid overtime hours each week.[31,37] Unpaid overtime work decreases job satisfaction, as does financial strain from health care expenses and job insecurity. The right to unionize leads to better wages and benefits, which improves patient care, job satisfaction, and worker retention.
Many HCWs have multiple jobs to supplement low wages and unstable hours. One study in Washington State showed more than one third of HCWs had multiple jobs. Low wages and insufficient hours were primary reasons for HCW turnover. Union advocacy for fair wages and safer and less stressful scheduling reduces the need for HCWs to have more than one job and improves client safety and worker retention.[8,30,37]
Access to health care is crucial. Caring for others can be physically and emotionally draining, especially working with patients who are experiencing cognitive impairments such as dementia. In addition, when HCWs are working during an illness, they place their clients at risk. Having the support of a union representative for grievances or meetings with an employer can ease HCW stress. Union membership can provide empowerment, purpose, and social support. Unionization of HCWs could provide a platform to voice the issues that are important for them, as well as helping them gain collective power to bargain and win better work conditions. Unions also support training and mentorship.[8,30] In accordance with collective bargaining agreements, multi-employer benefit trust funds (Taft-Hartley Trusts) can be established for unionized HCWs as a means of creating access to more affordable health care with greater worker control.
Consider HCW-owned cooperatives as a potential solution: Incentivizing and supporting the creation of home care cooperatives may be a viable strategy for improving worker satisfaction and retention. Cooperatives are democratically controlled organizations run by individuals with shared interests to meet their common social and economic needs. By pooling resources and building connections, members of cooperatives are able to establish and retain control of the business.[39,40]
Research suggests that cooperatives can give worker-owners access to better wages, benefits, and training opportunities relative to private firms. Numerous case studies of successful HCW cooperatives show considerable promise for the model. One example, Cooperative Home Care Associates (CHCA) in New York City, reports providing higher wages and better benefits than private home care firms. CHCA also claims a turnover rate of about one in five annually, while the industry average is one in three.[8,41] Although worker-owners already benefited from this collective power, CHCA voted to join the SEIU 1199 union in 2004 in hopes that the partnership could promote improvements for workers industry-wide.
Cooperatives have offered success in other industries and have been supported historically by the federal government through the U.S. Department of Agriculture’s Office of Rural Development, which provides funding, training, and technical support to groups hoping to establish cooperatives and has headed research projects on a wide range of issues facing cooperatives in multiple industries.
Cooperatives allow employees to reinvest profit where they see the greatest benefit. HCWs may decide to increase wages or provide benefits (e.g., insurance, paid time off, pension plans, training, child care, transportation subsidies) with surplus cooperative funds. Not only do these reinvestments directly benefit HCWs, but research indicates that democratic participation in the decision-making process improves worker satisfaction and loyalty. Evidence from cooperative case studies shows that increased trust and social capital lead to improved retention rates and that cooperatives lose fewer resources recruiting and training new hires.[41–43] Cooperatives offer employees coordinated and consistent scheduling, and employee-owners can decide how to balance the number of employees with full- or part-time schedules.
Employee collaboration in a cooperative business model provides opportunities for relationship building and participation in decision making, ultimately reducing worker isolation and providing better work support. Workers have reported that trust between themselves and their clients increases the ability of HCWs to adjust their work space, including implementing safety features. Increased trust and autonomy decrease HCWs’ exposure to work-related hazards.[39,40] While reported results of cooperatives are encouraging, additional research is needed to determine the impact of cooperative models on recruitment and retention on a national scale.
Conduct more research on home care workers: HCWs are an understudied group. Expanding research to include their voices and understand their role in the evolution of home care is critical in developing effective programs and policies. Research in the following areas is recommended.
- Private pay workforce: Relative to the home care workforce paid through public funds, the private pay workforce is underresearched. A better understanding of these workers may facilitate the creation of better support systems, lead to improved home care services for clients, and protect caregiving arrangements that are practical and cost effective for those needing care.
- Cost-effectiveness analysis: Substantial gaps in knowledge regarding long-term care costs, quality, and outcomes need to be addressed. Future cost-effectiveness studies could focus on home care in relationship to public health surveillance programs, hospitalizations, Medicare/Medicaid expenditures, and the financial effects of paid and unpaid home care provision on family caregivers.
- Unique barriers to union formation: Beyond the traditional barriers, research should address the gap in our understanding of why unions struggle to organize home care workers. Research should consider factors such as worker non-co-location, institutional hierarchies, socioeconomic conditions, and other potential barriers.
- Training effectiveness: Effective training improves client care outcomes and job satisfaction among HCWs, but the quality of training has not been extensively researched. Research on which training mechanisms are most effective would help recruit and retain workers and improve patient safety.[48,49]
- Worker-owned home care operatives: Demonstration projects will determine best practices and evaluation methods and provide a comprehensive set of health outcomes.
Executive directors and fiscal managers in home care agencies must work within cost constraints to ensure agency profitability through mergers and other structural transitions. They often believe they are forced to prioritize recruitment and retention over other potential improvements, especially given that Medicare/Medicaid reimbursement rates are set by federal policy. Additional training seems cost prohibitive and inconvenient due to staffing shortages; however, adequate training upgrades the workforce and is linked to overall workforce professionalization, leading to improved recruitment/retention and reductions in injury and illness rates.[1–3,8,10,30,46–48]
Union opponents argue that unions are irrelevant because pay is set by Medicare/Medicaid reimbursement rates, negating any impact unions might have on increasing pay rates. However, evidence demonstrates that meaningful pay rate disparities exist between union and non-union agencies. In addition, non-union agencies offer affordable health insurance and pension benefits less frequently. Unions often stimulate the call for higher wages and/or costly benefits, but the management team asserts it cannot afford them. Opponents of unions may also argue that they lack relevance or traction in home care settings due to variations in organizational models or worker isolation in individual workplaces. Researchers have found unions to be protective not only across the workforce but specifically for home care workers.[14,29–31,50] Critics of home care cooperatives note that the significant start-up investment required to succeed is a barrier to implementation. Cooperatives are also vulnerable to the larger home care market. However, Cooperative Home Care Associates achieved a profit after 2 years of initial investment and reports average annual profits of 1% to 2%.
Because more than one quarter of HCWs in the United States are immigrants who may face additional barriers to workplace safety and job retention, immigration reform could create a pathway to fill HCW jobs. Many have argued for the economic benefits of improved immigration policies for HCWs, advocating paths to citizenship for their immigrant caretakers.[45,46,51] Tax cuts or credits for HCWs and their clients could also work to support the home care workforce. Research has shown that tax credits for home care clients increase private home care utilization. The United States currently offers limited tax breaks to some individuals who live with their home care clients. Canada and nine European countries increasingly utilize formal and informal care plans involving public funding and/or “cash for care” models in which patients choose their care provider.
APHA endorses and supports:
Congressional and State Legislative Action to Raise Home Care Worker Wages, Provide Benefits, and Improve Work Organization
1. Lawmakers in congressional and state legislatures should establish Medicare and Medicaid reimbursement rates, consistent across both programs, that support higher wages for home health care workers at all skill and experience levels.
2. Congressional lawmakers should require private and public home care worker employers to:
- Increase wages for all home care workers and provide benefits including paid sick time, disability insurance, pensions, and paid time off/vacations.
- Implement policies that foster full-time employment and encourage home health care work to be organized by geographical region (to reduce travel time).
3. Congress and state lawmakers should support workers’ rights by removing anti-union legislation such as “right-to-work” laws, enabling home care workers to organize unions to improve their working conditions, incomes, and benefits.
4. Federal and state legislation should be enacted to require home care employers to negotiate with unions, cooperatives, and individual employees to address issues raised by home care workers.
5. Federal and state legislation should be enacted that provides subsidies supporting the hiring of vetted independent or cooperative home care workers by individuals with disabilities, older adults, or family members to improve access to and affordability of home care services.
6. The formation of benefit trusts for home care workers should be facilitated to improve access to and affordability of health care.
Workplace Safety and Health
7. OSHA should should issue the following three standards to apply to home care workers:
- A comprehensive illness and injury prevention program standard that requires employers to adopt a systems approach to identifying and remediating hazards in homes and other worksites. The program should include safety and health training, injury and illness tracking, and hazard identification that prioritizes protection from coronavirus exposure.
- A worksite violence prevention standard that includes hazard assessments and emergency back-up provisions.
- An ergonomics standard that includes approaches to obtaining Medicare- and Medicaid-funded transfer and other assistive equipment in the home and providing training in the use of this equipment.
8. Handguns or rifles (and ammunition) in the homes of clients with cognitive impairments or behavioral disorders should be stored or removed prior to HCW placement.
9. State and local departments of aging and health should receive funding to implement evidence-based programs that identify and remediate structural hazards for low-income residents to reduce slips/trips and falls in and around the home. Such programs might encourage partnerships with organizations representing aging populations (e.g., AARP).
Congressional and State Funding of Research Grants
10. The National Institute for Occupational Safety and Health and the Agency for Healthcare Research and Quality should receive funding to conduct intramural and extramural research exploring the most effective training approaches to improve both worker safety and patient safety.
11. State lawmakers should provide grants for demonstration projects and other research on the formation of self-governed and worker-owned cooperative organizations to assess their collective efforts to improve wages, working conditions, and quality of care.
Congressional and State Legislative Action to Enrich Training and Raise the Quality of Care
12. Workplace cultures should shift to improve recognition of HCWs as full members of the care team and engage in interprofessional education to foster teamwork among care workers at all levels of the professional hierarchy.
13. Federal training standards for HCWs should be raised to the Institute of Medicine’s recommendation of 120 paid hours.
14. Federal and state grants should be provided to promote state and regional collaboration as a means of improving quality of training, benchmarking effective programs, and updating existing training programs.
15. The U.S Department of Labor and state departments of labor should initiate and monitor the implementation of policies that incentivize effective recruitment and retention of the home health care workforce.
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