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.
Box 1: Information About the Focus Group Participants
The focus groups included 28 adults who self-identified as paid direct care workers or family caregivers to individuals enrolled in Medicaid and receiving HCBS. KFF worked with PerryUndem Research/Communication to recruit participants and conduct four focus groups. Individuals who were able to participate in our groups needed to have two hours of time, a quiet space, and internet. Participants included adults who varied in terms of the length of their time as a caregiver, type of employment, state of residence, gender, race/ethnicity, age, and immigration status. Groups were stratified into paid and family caregivers and the age of the people cared for. Some paid direct care workers were employed by home care agencies while others were employed and directed by the Medicaid enrollee they cared for through “self-directed services” programs. Some family caregivers received compensation for their role as caregivers, and most maintained other employment. These characteristics may not fully represent many caregivers, so findings may not be generalizable to the entire caregiver population. See Appendix Table 1 for demographic details about the participants in the focus group, and a separate KFF analysis on the demographics of all direct care workers nationwide.
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.
“I started [caregiving] when I was actually fresh out of high school. I had a grandma that needed help…the county of Los Angeles [would] give her hours and in return you help her out, you cook her meals, help her laundry, etc.…I liked helping people so then I continued…I’m a home health aide. I did my 120 hours course to get my caregiver certificate and I take pride in my work. I just want to give the patients…whatever I can do to help them.”
– Latino man, CA, 36, Direct Care Worker
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.
“She’s about 105 pounds so I pick up with one hand and one arm and put her in the shower and I cook, I clean, I do everything for her. Because on a good day, she can sit up by herself and she can possibly hold onto something and stand up for about 10 seconds. I don’t want her doing that, because if she falls and hurts herself, then that makes things worse…she said; she said, cuz why do you do it? I said; if not me, who? That’s how I feel, because I would hope to God that if I ever needed it, someone would do for me what I would do for you.”
– Black man, FL, 59, Family Caregiver
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.
“The physical part is [hard]. I’m getting older and it’s getting a little harder…sometimes my client gets dizzy from his medication, and I’ve got to help him. And he’s 6 foot tall, 250 pounds. So, if he was to fall there’s no way I could catch him. Just keeping up with taking care of him. I don’t know how long I’ll be able to do this as I get older.”
– White woman, MO, 51, Direct Care Worker
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.”
“Mentally, it’s just so hard… my patient will have fits and literally scream all day even though nothing’s wrong with her. And it’s just like draining hearing that scream 24/7 for eight hours a day. She’ll have no problem just screaming; or she just won’t want to put her clothes on or she will just start throwing everything…So stuff like that, I feel like it just gets to me. Because it’s just like, ‘oh I just cleaned up, and now like it’s back to being messy.’ You know you can’t be irritated; you can’t be annoyed because [patients aren’t] capable of knowing what they’re doing.”
– Asian woman, VA, 23, Direct Care Worker
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.”
“I’m constantly turning over scenarios in my head and then I’m always wondering how long can I continue this? You know [he is] going to need care for the rest of his life, unfortunately…He’s always going to have to either live with family or at worst a group home setting. So these are things that I have to worry about, and I’m getting older. And not only worrying about my end-of-life care, but somebody else who’s nowhere near end-of-life and how do I do that? My head’s always in a spin. It’s just always in a spin.”
– Biracial woman, AZ, 51, Family Caregiver
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.
“Sometimes you’re around [the patient’s] family as if they were yours. It’ll be like a family member that flew out here, and they come in and they want to nitpick and do all these things…Meanwhile, you’ve been with this patient for years at this point and you have never seen this man before. And that becomes a sticky situation because now they want to voice their concerns and it’s like; ‘where were you for the last two years I’ve been with your dad, your aunt, your father? I didn’t even know you existed.’ A lot of the times the families are the biggest problem and, to an extent I get it, because they’re emotional, but at the same time I feel like they need to understand it from a caregiver’s point of view, because if that was the case why don’t you just bring them home with you.”
– Biracial woman, NY, 37, Direct Care Worker
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.
“Working with the elderly, sometimes somebody like me, they don’t want…They don’t want me to come in their house or take care of them. I have had that happen. They prefer a white caregiver…they’ll tell you straight to your face; ‘I don’t want you to take care of me.’ I’ll call my job and let them know… ‘hey, this patient doesn’t want me to take care of them so they’ll reassign me to somewhere else.’…If the patient doesn’t want me to touch them, I can’t provide the proper care. That’s putting the patient’s caring at risk.”
– Black woman, GA, 36, Direct Care Worker
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.
“Our big problem is paperwork and reapplying [for Medicaid] and all of that stuff. It’s just exhausting. And you’ll have to do it three and four times, and you’re aggravating your doctor’s office, because they’ve already faxed it and they have to fax it again. Those are the big problems for us, the trying to renew everything that was put in place three months ago or a year ago, and you have to go all the way through it again. And then you get approved, and you’re not approved for the year, you’re approved for three months, after four months of working on it and you’re still working on it and it’s just a never-ending thing, paperwork wise.”
– White woman, FL, 57, Family Caregiver
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.
“My [daughter] is not working, she’s saying the economy is hard…I work such varied hours, I’m not there for her. And then it’s like, am I doing enough? Her mental health is really spiraling out of control…I’ve been at this job for three years. My patient is gradually declining [with] Alzheimer. Also, my daughter tried to commit suicide…I have committed to this job to be here. And then it’s like, I couldn’t find anybody at the time who was willing to work with a dementia patient…it is so hard. It’s kind of stressful, because when I leave [work] and I go home, it’s like I’m going into another stress of trying to talk to [my daughter] and make her feel like it’s going to be okay. So that’s my stress.”
– Black woman, NY, 51, Direct Care Worker
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.
“I’m juggling a lot. I’m sometimes at [loved one’s] house until 11:00, 10:30. I’m feeding him his dinner and then after that it’s [his] medications and getting him from his power chair into the bed and there is just a couple of hours routine that we have to do and it’s making sure that he’s coughing and that he feels his airways are open before I leave and putting the oxygen on and he has to feel comfortable to be left alone for the night, and it takes a while. And so I’m not getting home until maybe 11-11:30, and I have to get up for my regular job in the morning, and I just find myself exhausted. And that’s how it’s affecting me, just exhaustion.”
– White woman, FL, 57, Family Caregiver
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.
“I have to find a way to put myself first because I’m getting burnt out, I’m getting overwhelmed, and I absolutely love my [loved one] but you know, I’m thinking about the long term and I have to try to figure something out. Thank God, I have my husband who helps me with the other things, but I think because I’m doing this alone, that’s the scariest part.”
– Latina woman, NY, 34, Family Caregiver
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.
“I’m not even getting paid the state minimum wage. I’m still arguing with the company that I work for, because I got a raise a year ago to the minimum wage. Now minimum wages went up again this year, and they don’t want to [give me another] raise. And I’m like, isn’t that illegal? And if for some reason I can’t clock in by the telephone and I have to send in a time sheet, they gave me $2 an hour less for those hours on that day. So that’s really stinky.”
– White woman, MO, 51, Direct Care Worker
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.
“Oh, just, well I was just, like I just said earlier, just the fuel cost alone that puts a big hole in your, in your check. (short laugh) And then you got the rent. And car insurance, my car insurance went up, I had to call them yesterday; I’m like oh my God what’s happening? And my wages are not matching what’s happening here.”
– Black woman, NY, 51, Direct Care Worker
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.”
“The biggest issue that I have is we don’t have any benefits. 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.”
– White woman, PA, 28, Family Caregiver
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.
“Right now our life is pretty difficult… so much of my time is focused on attending toward my son, which I don’t mind, but due to the inflation and everything that’s going on, it makes it hard for me to pick up extra work here and there, so definitely it’s a little rough right now.”
– Black man, IL, 34, Family Caregiver
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.
“Because it’s a family member that I take care for a certain amount of hours, I do get paid…it definitely helps, especially with the inflation of the food prices and the gas…[but] it’s not minimum wage.”
– Black woman, NY, 40, Family Caregiver
Box 2: How do Medicaid payments to family caregivers work?
The availability of payments for and support of family caregivers increased during the public health emergency, and nearly all states still allow payments to family caregivers for at least one of their HCBS programs. Different states and HCBS programs have varying processes for getting payments to caregivers, which may be difficult for family caregivers to navigate. Caregivers may have to meet specific state requirements or become certified Medicaid providers in the state to receive payments. Family caregivers can be paid an hourly wage or a stipend through a structured family caregiving option. States are more likely to allow family caregivers to be paid if they are not legally responsible for the person receiving care and if the person receiving care is enrolled in an HCBS waiver. Payments to family caregivers are most common for people with intellectual or developmental disabilities and people who are ages 65 and older or with physical disabilities.
Focus group participants had views about policy changes that could better support caregivers.
“I would like policymakers to know that my job is important, because who would take care of elderly patients who would care for them, not to abuse them? So, you know, put plans in place to assist us, to help us, so we can be great at our jobs.”
– Black woman, NY, 51, Direct Care Worker
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.
“One of the things I noticed in my agency is that we’re top heavy in terms of managers. We’ve got a lot of managers that have a lot of credentials and they’re making much, much higher salaries than the people who are in direct service roles. I think there should be more equity, where the people who are doing the hands-on work should be getting higher wages. I think that some of the higher-level ones maybe are overpaid.”
– White man, MA, 61, Direct Care Worker
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.
“Being able to take a leave of absence, just to take a little break would be wonderful. Just because it is mentally draining, physically draining. Because you’re dealing with a lot…I would like something that will give you a break, not a vacation…[Being able] to take a leave of absence just for a few weeks just to reset, that would be ideal for me and paid.”
– Biracial woman, CA, 42, Direct Care Worker
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.
“I also think that we need to be paid more. And it needs to be easier for family members to be able to get paid…because I think family members overall are able to provide better quality care. There are some people that are not comfortable with people who aren’t family members coming in and being able to give family members more options to make enough to make the caregiving more of a focus, would probably be beneficial.”
– White woman, PA, 28, Family Caregiver