Direct Care Workers Play a Vital Role in Providing Care but Need Support and Recognition

Direct care workers — home health and personal care aides, for example — play pivotal roles in providing essential personal care, homemaking, and home health aide services to people who need help with daily tasks. These services allow Medicaid and Medicare beneficiaries to live at home and avoid costly medical or institutional services. Many direct care workers are employed by home care agencies or are compensated family providers — both funded by Medicaid — but this largely invisible workforce face challenges. They perform demanding work under considerable stress for low wages and without adequate benefits. The shortage of direct care workers is deepening and the demand for services is growing as the population ages; it is time for policymakers to act.

We conducted four focus groups of direct care workers to explore ways to strengthen recruitment and retention. These agency workers and paid family caregivers are diverse in terms of geography, gender, race, ethnicity, and age. They provide services to beneficiaries including older adults, children, and individuals with disabilities. The focus groups revealed the following insights.

Diverse Entry Paths. Direct care workers enter the profession in various ways. Some are led to it by family or community members needing care. Many are motivated by a desire to help people, while others follow in the footsteps of relatives working in nursing or direct care work. Others transition from different fields or health-related professions like nursing and social work in pursuit of more fulfilling and flexible work, but low pay remains an issue.

Scope of Services. Direct care workers provide a wide range of services at home, including assistance with activities of daily living (ADLs) like bathing or showering, dressing, getting in and out of bed or a chair, walking, using the toilet, and eating. They also handle instrumental activities of daily living (IADLs), such as medication management, appointment scheduling, meal preparation, and housekeeping. Many engage in complex tasks like infusions, injections, wound care, and bandage changes, even without specific training. A significant number have experience with Alzheimer’s disease and related dementias in older populations and autism in younger clients. Cognitive impairments can be particularly challenging, requiring constant supervision and safety monitoring. Workers also offer companionship to address social isolation and depression. However, they often feel excluded from discussions with families and health care professionals. When this happens, they miss critical information needed to ensure the safety and health of their clients.

Challenges of Full-Time Work. Full-time employment as a direct care worker is often unsustainable due to financial, emotional, health, and career-related factors. Low wages, typically ranging from $9 to $14 per hour, make it difficult for workers to cover basic living expenses. Part-time work is common because of the demanding and stressful nature of the job. Part-time hours also allow workers to manage their childcare responsibilities or take on second, higher-paying jobs.

Health and Well-Being Challenges. The demanding nature of the job takes a toll on workers’ physical and mental health. Many experience burnout and social isolation but persist out of a desire to help. Focus group participants said they value a job with a human connection and expressed concern for the health and safety of their clients. Most are low-income and need to work to support their own families. Some grapple with unaddressed mental health issues like depression and anxiety; some seek therapy or counseling. Health issues like high blood pressure and chronic illnesses can further compound their challenges. They have limited access to health care services and often work through illnesses because sick leave is not typically provided. Many workers said they have health insurance coverage through Medicaid.

Underpaid and Underappreciated. All participants struggled with feeling unrecognized, underappreciated, and underpaid for their arduous work. They noted that their wages are approximately half of what fast-food workers or house cleaners earn, despite requiring a higher skill level. Many report not receiving compensation for extra hours spent waiting for family members to arrive or accompanying clients to the hospital. Few receive overtime pay; most do not earn a living wage. Those nearing retirement age did not see a way to afford retirement.

Findings suggest the following policy priorities to retain and attract more direct care workers:

Increase pay and benefits. Policymakers could address the high turnover rate by providing higher levels of funding and requiring home care agencies to raise wages and offer better benefits. Agencies could include signing and quarterly bonuses for providing quality care. Workers seek improved benefits like health insurance, retirement plans with employer contributions, paid sick leave, paid holidays, and tuition reimbursement. Establishing a workers’ union is also viewed as a way to safeguard pay, benefits, and working hours.

Provide greater support. Recognize and address the stressful and physically demanding nature of the job. Greater on-the-job support by supervisors and employers could help address the emotional and mental health demands. Paid leave and bonuses for quality work, as well as safety measures and training, could significantly improve worker well-being. Increasing the number of available staff and enhancing leave benefits could help ensure workers receive the necessary time off.

Enhance recognition. Direct care workers often feel invisible and undervalued. Policymakers could elevate the visibility of direct care workers through hearings, legislation, press events, and public recognition. These activities would acknowledge the vital role caregivers play in supporting older adults, children, and adults with disabilities and recognize their contribution to helping people remain at home and avoid unnecessary hospital and nursing home admissions. Better recognition would raise the profile of this profession as an essential service career.

Promote the profession. Improve awareness of the direct care worker profession and encourage new entrants by targeting high school students and offering compensated training or hosting programs to introduce people to direct care jobs. Publicity should emphasize the importance of this career, with a focus on a living wage and adequate benefits.

The experiences shared by direct care workers in these focus groups underline the urgency for policymakers to address the challenges faced by this largely invisible workforce. They perform demanding work under considerable stress, for low wages, and without adequate benefits. As the shortage of direct care workers deepens and the demand for their services grows with an aging population, the time is ripe for meaningful change.