Experiences of Direct Care Workers and Family Caregivers of Home- and Community-Based Services (HCBS)

KFF estimates that there are over 4 million people using Medicaid home- and community-based services (HCBS), which include medical and supportive services that assist people with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medications, and housekeeping). Direct care workers play a pivotal role in providing such services for people who need help because of aging, chronic illness, or disability. Direct care workers perform demanding, high-stress work for low wages and often no benefits. There have been longstanding challenges finding enough direct care workers, and the COVID-19 pandemic exacerbated those issues considerably. In a 50-state survey of officials administering Medicaid HCBS programs, nearly all responding states reported they were experiencing shortages of direct support professionals, personal care attendants, and/or home health aides.

In response to workforce issues, the federal and state governments have taken action to support direct care workers. The American Rescue Plan included a provision to increase the federal matching rate (FMAP) temporarily for spending on Medicaid HCBS by 10 percentage points, and all states used at least part of these additional federal funds to recruit and retain direct care workers. The Biden Administration also finalized a rule aimed at improving access to Medicaid services, which included several provisions aimed specifically at strengthening the HCBS workforce, including a requirement for states to spend least 80% of total payments for certain HCBS on compensation for direct care workers. Nearly all states have adopted payment rate increases for HCBS providers with the goal of boosting staffing levels, as reported to KFF in a 2023 survey.

Although long-term services and supports (LTSS) is not a dominant election issue, support for caregivers resonates with voters and both presidential candidates have called for investing more in home care. Former President Trump has called for more home care for seniors, while Vice President Harris has called for increased home care for seniors and people with disabilities, and has also promoted rules and legislation to strengthen Medicaid HCBS. Vice President Harris recently put forth a proposal that would establish a new Medicare home care benefit, among other changes. Although the proposal does not yet have specifics, it proposes to lift up care workers by providing access to better wages.

KFF conducted four focus groups in May 2024 with direct care workers and unpaid caregivers who provide HCBS. See Box 1 and Appendix Table 1 for more information about the focus group participants and methods. This issue brief presents findings from the focus groups including caregiver characteristics; physical, emotional, and mental caregiving demands of caregiving; their wages, finances, and opportunities for advancement; and what caregivers would like policymakers to know about their work. Key findings from our groups, which cannot necessarily be generalized to all caregivers, include the following:

• All caregivers reported that they were drawn to the work because it allowed them to help people. Many paid caregivers started as unpaid family caregivers before becoming paid caregivers while many participants in the family and friend focus groups reported that they started caregiving because they were the only person available to help.
• All caregivers reported that their jobs were physically and mentally demanding and there were limited resources to help deal with challenges of caregiving. Caregivers described the difficulties of balancing paid and family caregiving responsibilities with caring for their other family and friends, professional commitments, and self-care.
• Caregivers in all groups reported struggling to make ends meet and that their compensation did not match the demands of the work. Some paid caregivers described this work as a steppingstone to a different career, while other caregivers described this career as more permanent, though nearly all agreed that there are little to no opportunities for advancement. Participants in the family and friends groups who were receiving payments from Medicaid reported that the Medicaid payments were lower than their earnings from other work. Not surprisingly, caregivers voiced support for polices to increase wages and benefits for paid caregivers and provide training and resources for all caregivers, which could be achieved through increased funding for Medicaid HCBS or other mechanisms.

All caregivers reported that they were drawn to the work because it allowed them to help people.

Both paid and unpaid caregivers reported that they were drawn to the work because it allowed them to help people. Caregivers across the focus groups described providing a wide range of services to those that they cared for, including bathing, feeding, preparing meals, running errands, and providing companionship.Some caregivers reported helping with specific activities, such as preparing meals while other caregivers reported that they helped with “everything from A to Z.” Though most participants described the work as mentally and physically strenuous, nearly all reported it gave them a sense of feeling like they were helping people by providing help with things individuals could not do on their own or without assistance. Caregivers reported feeling a great sense of satisfaction from their work, with family caregivers deriving fulfillment from caring for loved ones while paid caregivers derived fulfillment from helping those people who were unable to care for themselves. One caregiver noted “for me, personally, the end result was to just get that smile,” while another noted that “you kind of build a bond with [the clients] over time… and they become like family.”

Many paid caregivers started as unpaid family caregivers, sometimes for multiple family members, before becoming paid caregivers. Paid caregivers described being drawn to caregiving jobs because they had first experienced taking care of family members, such as grandparents or parents, and were able to “make a difference” in their clients’ lives. One caregiver noted he started caregiving right out of high school for his grandmother and discovered that he enjoyed the work immensely. He continued on to get his caregiver’s certificate, eventually becoming a home health aide. Another caregiver took care of his grandmother and his dad before eventually starting to work with non-family members on a paid basis.  

Many participants in the family and friend focus groups reported that they started caregiving because they were the only person available to help. Family caregivers noted that while they were doing this out of love for the person they were caring for, they also felt they were the only person available to do the work. One participant shared: “it became known throughout the family that [she] was the caregiver, that [she] was the one to call.” Family caregivers also shared that they hoped someone would one day care for them the way that they are caring for others.

All caregivers reported that their jobs were physically and mentally demanding.

Participants in both groups described physically demanding responsibilities, with older caregivers reporting that caregiving became increasingly difficult as they aged. Nearly all caregivers described the job as taking a physical toll on their bodies and shared physical health conditions they had developed due to the demands of caregiving, including back pain, knee pain, and overall fatigue.One participant who was 58 years old and diagnosed with fibromyalgia noted that there were days where “[she] feels worse than [he] does,” referring to the loved one she cared for. Another 60-year-old participant described that “it takes a tremendous amount of energy to be able to do the kind of work that we do,” noting that he no longer has the physical capacity to do the work.

Participants in both groups described the mentally demanding responsibilities, which included watching people’s conditions deteriorate over time. Nearly all caregivers across groups expressed that thinking about the long-term prognosis for the people they cared for was incredibly emotionally challenging. Caregivers working with older people, particularly those with dementia, shared that it was difficult knowing that the people they take care of won’t get better, and described the work as “thankless.” Caregivers who cared for younger children described the toll of the work as less physically demanding but much more emotionally challenging. A paid caregiver explained, “If I have a sick child that’s on the verge of death, that is really, really hard for me.”

For parents with children who are medically complex or have significant physical, mental, or intellectual disabilities, caregiving goes well beyond the “ordinary” responsibilities of being a parent. Parents of such children are often required to provide what the Centers for Medicare & Medicaid Services (CMS) describes as “extraordinary care,” which exceeds the range of activities that a parent would ordinarily perform in the household on behalf of a person without a disability or chronic illness of the same age. Such responsibilities are often necessary for children to avoid being placed in an institution, which is why Medicaid will pay for those services in some cases. Parents in the focus groups shared fears about what caring for their children would look like in the future, especially as the parents themselves aged. One participant noted that it was extremely mentally challenging to envision the future and think about how her son was “always going to have to be, either liv[ing] with family or at worst…a group home setting.”

Participants in both groups noted there were few resources to help deal with mental, emotional, and physical challenges of caregiving. Most paid caregivers explained that their employers provided limited emotional and mental support. Many of them relied on resources outside of their employer to deal with the demands of the work, noting examples such as therapy, exercise, and religion. Family caregivers also noted that they had few resources to cope with the demands of their work: one participant described the focus group as their first opportunity to open up about the challenges of caring for their loved one.

Several paid caregivers described difficult and often unkind treatment from clients and their families, adding to the mental challenges of an already difficult job. Paid caregivers overwhelmingly described the job as emotionally draining and some described having to mentally prepare for the demands of the work prior to a shift. Several described difficult conversations with the family members of those they care for, explaining that they are frequently accused of not properly caregiving for the family’s loved one. One caregiver explained “When [the patient’s families] do come they will swear you’re not taking care of their mom or dad correctly, despite not coming around for months at a time.”  A caregiver agreed, describing the caregiver as “stuck in between” caring for the patient and coordinating with difficult family members who are emotionally drained and may not understand the limits of Medicaid funding.

A few direct care workers who were Black reported experiencing racism from clients or family members of clients. Those caregivers reported that racial discrimination impacted their ability to successfully do their work and added to the mental challenges of the work. One Black caregiver shared that her elderly patients sometimes “don’t want [her] to come in their home or take care of them…They prefer a White caregiver.” These experiences echo findings in KFF’s 2024 survey, in which more than half of Black adults responded that racism is a major problem for employment in the U.S.

For family caregivers, some of the unique demands stem from the emotional demands associated with caring for a loved one and administrative barriers to accessing Medicaid HCBS. Nearly all family caregivers reported that the work was a challenging obligation, but that they really wanted to avoid making their loved ones feel like a burden. They saw their roles as fulfilling and appropriate duties for family members. One participant summed it up: “it’s my mom, she took care of me – so I need to take care of her.” Beyond the emotional challenges, some participants described significant administrative barriers related to accessing Medicaid HCBS for their loved ones. One participant struggled to navigate the paperwork and complicated timelines of ensuring their loved one remained enrolled in Medicaid and another expressed frustration that they were not able to get approved for enough hours of paid care, which was particularly challenging because their loved one needed help round-the-clock.

Caregiving is a complex balancing act.

Participants in the paid focus groups described having difficulties balancing work with other responsibilities, especially to their own families. Caregivers described the immense challenge of caring for someone and then, going home and immediately caring for other family members. Several caregivers noted how they were often emotionally and physically depleted and felt they did not have energy left to properly care for their children and spouses. One caregiver described that between her night shifts at work and her school commitments during the day, she has wondered whether she is still being a good mom. Another caregiver agreed and explained, “I have a five-year-old and she wants to sometimes play, and sometimes I don’t have enough sleep, sometimes I’m drained.” Some caregivers had their own emotionally intense family challenges at home that they were not able to provide sufficient attention to due to the lack of emotional and mental capacity after a long day of caregiving. Some caregivers worked schedules that made it difficult to have time with their children at all. Another caregiver described the challenge of giving her best to her client and then “sometimes not having that energy to go and basically give [her] best to [her] home, [her] children.” The situation becomes harder when caregivers’ shifts end and there is no one coming to replace them. One caregiver works the night shift before getting home to take her kids to school and daycare. When the day shift worker never arrived to replace her one morning, she called the agency only to be told that legally, she could be there for 20 hours. She was forced to choose between not showing up for her kids or leaving the patient—who required round-the-clock care—alone.

Participants in the family and friends group described difficulties balancing caregiving responsibilities with self-care. Many family caregivers mentioned compromising care for themselves, forgoing exercise, or doctors’ visits to fulfill their caregiving duties. One participant described putting off mammograms to the point of having to have surgery, noting that “I knew there was something wrong.” She explained that she has had doctor appointments scheduled, but something would come up with her mother and she would not be able to find help in time to attend her scheduled appointment. Family caregivers also described elongated periods when they were caregiving on their own with no help as “overwhelming,” and that splitting the responsibility of caregiving with other family members helped enormously.

Many family caregivers did not have paid caregiving help to help balance responsibilities because of a lack of trust in paid caregivers, high costs, or difficulty finding someone. Some family caregivers explained that they were reluctant to have paid caregivers help out due to the lack of trust in paid caregivers, while others have struggled to find someone that fits the needs of their family. One caregiver noted that her grandmother “is picky….She only wants to deal with family.” One caregiver described the difficulty of finding culturally competent care because her father only speaks Spanish.

Caregivers in both groups reported struggling to make ends meet and compensation did not match the demands of the work.

Nearly all caregivers agreed that their compensation did not match the demands of the work. Participants generally agreed that the work was not valued as highly as it should be, with one participant noting that “people pay more to take care of their animals than they do [for] our elderly.” Among participants, there was no consensus on the exact level of compensation that was sufficient. One participant explained “I feel like you’re never going to get paid enough… they smack you, they spit on you…but I feel like we definitely deserve… a higher wage.” In 2023, the Bureau of Labor Statistics reported that the median pay for home health and personal care aides was $16.12 per hour or $33,530 per year. KFF analysis found that in 2022, 65% of direct care workers made less than $35,000 annually.

Some caregivers felt that their low wages reflected inequitable treatment by employers. One paid caregiver felt underappreciated and angry when she learned that another caregiver serving the same client was being paid $10 more an hour than she was. Another caregiver described pay disparities within the agency between management and the caregivers: “I think there should be more equity, where the people who are doing the hands-on work should be getting higher wages.” These sentiments expressed by caregivers align with the provisions in the recent Medicaid access rule which requires that at least 80% of Medicaid payments for certain HCBS be spent on compensation for direct care workers. 

Participants in the paid groups reported little growth in wages over the past few years despite higher costs of living. Nearly all participants agreed that inflation and the high cost of living combined with low wages were causing enormous financial stress in their household. One paid caregiver described that she had been “struggling financially trying to keep up with groceries, food, and gas,” while another explained having to work two jobs to deal with the impacts of inflation.

Most paid caregivers reported having no paid time off or other benefits. Most caregivers did not receive health insurance through their employer and instead relied on other sources for health insurance including Medicaid, the Marketplace, or a spouse’s employer-based health insurance. Nearly half of paid caregivers in the focus groups were on Medicaid and several caregivers were uninsured because they did not qualify for Medicaid and thought private insurance was too expensive. One caregiver explained that she was uninsured because “a lot of these healthcare plans that these jobs offer are not affordable.” Several caregivers mentioned wanting paid time off, given the demands of their jobs. One participant explained, “The company we work for we don’t have vacation days, we don’t have time off, we don’t have any health insurance, and I don’t think that’s right.” Another participant mentioned that retirement benefits would also be a good benefit to have, explaining “when you reach retirement age, you don’t have to be depending on your kids to supplement your income.”

Some paid caregivers described this work as a steppingstone to a different career, while other caregivers described this career as more permanent, though nearly all agreed that there are little to no opportunities for advancement. Several of the paid caregivers in the focus groups were in school and expressed the desire to use their forthcoming degree to leave the direct care workforce and go make more money elsewhere. One paid caregiver who was in school to become a registered nurse explained “I don’t see myself doing home health in the long term. I would like to be like a healthcare administrator in a nursing home.” Another caregiver described “I’m going to leave this field because obviously it’s underpaid, and I have to put my kids first.” Several of those who described this career as more permanent also lived in households where there were other earners and explained that those other earners were key to being able to continue their caregiving career.

Participants in the family and friends group also reported struggling to make ends meet, especially when they had to reduce their hours because of caregiving duties. Several family caregivers had to reduce their number of working hours because of caregiving resulting in lower income levels and careful budgeting. One participant noted that after reducing their work hours, their household budget got tighter. Their kids were “without as much as they [were] used to” and the participant “hoped to be making more money you know, in order to be saving up for [their] own retirement.” Some family caregivers reported relying on other family members, especially spouses, to keep up with household expenses. One family caregiver shared that their partner had become the “primary bread winner” of their household. Several family and friend caregivers who cared for older family members noted that they were also stressed about their loved one’s finances.  

Participants in the family and friends groups who were receiving payments from Medicaid reported that the Medicaid payments were lower than their earnings from other work. Several family caregivers reported receiving payments from Medicaid, though other family caregivers reported not knowing that this was an option available to some family caregivers (Box 2). One caregiver explained that she knew that her dad qualified for a part-time paid caregiver through Medicaid, but never looked into whether she would be able to receive payments, noting “I am curious to know…if I could since I’m already doing the work.” Those who received payments noted that while the payments were helpful, they were insufficient for the work performed and did not offset the impacts of inflation and overall costs of living. One family caregiver reported trying to find a different agency to work with since different agencies pay different rates.

Focus group participants had views about policy changes that could better support caregivers.

Nearly all caregivers highlighted the importance of increased wages to support access to high-quality paid care, and the types of policies that would make wage increases possible, which include more funding for Medicaid HCBS. There was no consensus on an ideal level of compensation for caregivers, but all focus groups discussed the need for more Medicaid funding to address the insufficient payment rates. Paid caregivers and family caregivers alike believed that Medicaid should be paying more for paid caregivers. A paid caregiver explained that higher wages would mean that “[he] wouldn’t have to work another job, and [he] would actually be able to have a better balance with my personal life and [his] job.” A family caregiver noted specifically that paid caregivers needed to be paid more, saying “our loved ones need to be taken care of as well and these people, they pay them nothing. So that reflects in the care that…[our] loved ones get.”

Most caregivers thought that higher wages would require additional Medicaid funding, but some caregivers reported that they felt a higher share of Medicaid spending could go to wages for direct care workers. A recently finalized rule under the Biden-Harris Administration aims to address the latter issue: Starting in 2028, states will be required to ensure that at least 80% of Medicaid payments for personal care, homemaker, habilitation, and home health aide services go to compensation for direct care workers.

Paid caregivers expressed that in addition to higher wages, they wanted better benefits, training, and advancement opportunities. Paid time off was one of the more frequently requested benefits. One paid caregiver previously had PTO but lost it after switching agencies. Participants expressed that PTO “was a big help for [them], just to be able to take a break because [providing] healthcare is taxing on your body.” A few paid caregivers believed health insurance was an important benefit as well, especially due to the physical demands of their job. One paid caregiver who was uninsured was concerned that the physical demands of their work would eventually “take a toll” on them. Caregivers also explained that they felt stuck at the level of work they were doing and expressed interest in career advancement opportunities. One paid caregiver said their employer provided fair wages, but no training or advancement for full-time employees.

Paid and unpaid caregivers alike reported wanting more supports for the mental and emotional demands of caregiving. One paid caregiver said they would be interested in a support group explaining that the work would “catch up to them” as they continued in the profession. Several caregivers said they wanted emotional support to better manage the stress of caregiving. One family caregiver said, “the support network isn’t there in terms of even having a space [to] discuss it with other carers…there’s just nothing really there for us to mentally unpack everything that we have to deal with.” Overwhelmingly, caregivers wanted policy makers to know that the caregiving work they do is important and that they deserve fair pay and fair treatment.

Beyond mental and emotional supports, family caregivers voice support for policies that would provide them with more opportunities for training, respite care, and reimbursement for their time, particularly when caregiving responsibilities rendered them unable to work. Family caregivers noted that they rarely received specific training on how to care for their loved ones. They described relying heavily on external research from sources such as Facebook or Google to provide them with specific instructions on how to care for their loved ones. One family caregiver mentioned that training on time management might help them better manage the demanding schedule of their caregiving duties. Some family caregivers also expressed interest in respite care to provide them with a break and alleviate the stresses of constant caregiving. Some family caregivers described ways in which financial reimbursement could be helpful, particularly for people who had to reduce their working hours because of caregiving. One caregiver explained that they were not aware that they could potentially be paid for their role as a caregiver and noted that increasing awareness of those opportunities is important. A different caregiver noted that tax exemptions or deductions tax exemptions or deductions could be one path to compensating family caregivers who were not paid by Medicaid.