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

KFF estimates that there are over 4 million folks utilizing Medicaid home- and community-based providers (HCBS), which embrace medical and supportive providers that help folks with actions of day by day residing (equivalent to consuming, bathing, and dressing) and instrumental actions of day by day residing (equivalent to getting ready meals, managing drugs, and housekeeping). Direct care employees play a pivotal position in offering such providers for individuals who need assistance due to growing old, persistent sickness, or incapacity. Direct care employees carry out demanding, high-stress work for low wages and infrequently no advantages. There have been longstanding challenges discovering sufficient direct care employees, and the COVID-19 pandemic exacerbated these points significantly. In a 50-state survey of officers administering Medicaid HCBS applications, almost all responding states reported they have been experiencing shortages of direct assist professionals, private care attendants, and/or residence well being aides.

In response to workforce points, the federal and state governments have taken motion to assist direct care employees. The American Rescue Plan included a provision to extend the federal matching price (FMAP) briefly for spending on Medicaid HCBS by 10 share factors, and all states used not less than a part of these extra federal funds to recruit and retain direct care employees. The Biden Administration additionally finalized a rule aimed toward enhancing entry to Medicaid providers, which included a number of provisions aimed particularly at strengthening the HCBS workforce, together with a requirement for states to spend least 80% of complete funds for sure HCBS on compensation for direct care employees. Practically all states have adopted fee price will increase for HCBS suppliers with the aim of boosting staffing ranges, as reported to KFF in a 2023 survey.

Though long-term providers and helps (LTSS) isn’t a dominant election challenge, assist for caregivers resonates with voters and each presidential candidates have known as for investing extra in residence care. Former President Trump has known as for extra residence look after seniors, whereas Vice President Harris has known as for elevated residence look after seniors and other people with disabilities, and has additionally promoted guidelines and laws to strengthen Medicaid HCBS. Vice President Harris lately put forth a proposal that may set up a brand new Medicare residence care profit, amongst different adjustments. Though the proposal doesn’t but have specifics, it proposes to elevate up care employees by offering entry to higher wages.

KFF carried out 4 focus teams in Might 2024 with direct care employees and unpaid caregivers who present HCBS. See Field 1 and Appendix Desk 1 for extra details about the main focus group members and strategies. This challenge transient presents findings from the main focus teams together with caregiver traits; bodily, emotional, and psychological caregiving calls for of caregiving; their wages, funds, and alternatives for development; and what caregivers would really like policymakers to find out about their work. Key findings from our teams, which can’t essentially be generalized to all caregivers, embrace the next:

All caregivers reported that they have been drawn to the work as a result of it allowed them to assist folks. Many paid caregivers began as unpaid household caregivers earlier than changing into paid caregivers whereas many members within the household and buddy focus teams reported that they began caregiving as a result of they have been the one individual obtainable to assist.

All caregivers reported that their jobs have been bodily and mentally demanding and there have been restricted assets to assist cope with challenges of caregiving. Caregivers described the difficulties of balancing paid and household caregiving tasks with caring for his or her different household and pals, skilled commitments, and self-care.

Caregivers in all teams reported struggling to make ends meet and that their compensation didn’t match the calls for of the work. Some paid caregivers described this work as a steppingstone to a special profession, whereas different caregivers described this profession as extra everlasting, although almost all agreed that there are little to no alternatives for development. Individuals within the household and pals teams who have been receiving funds from Medicaid reported that the Medicaid funds have been decrease than their earnings from different work. Not surprisingly, caregivers voiced assist for polices to extend wages and advantages for paid caregivers and supply coaching and assets for all caregivers, which may very well be achieved via elevated funding for Medicaid HCBS or different mechanisms.

All caregivers reported that they have been drawn to the work as a result of it allowed them to assist folks.

Each paid and unpaid caregivers reported that they have been drawn to the work as a result of it allowed them to assist folks. Caregivers throughout the main focus teams described offering a variety of providers to those who they cared for, together with bathing, feeding, getting ready meals, working errands, and offering companionship.Some caregivers reported serving to with particular actions, equivalent to getting ready meals whereas different caregivers reported that they helped with “every thing from A to Z.” Although most members described the work as mentally and bodily strenuous, almost all reported it gave them a way of feeling like they have been serving to folks by offering assist with issues people couldn’t do on their very own or with out help. Caregivers reported feeling an important sense of satisfaction from their work, with household caregivers deriving success from caring for family members whereas paid caregivers derived success from serving to these individuals who have been unable to look after themselves. One caregiver famous “for me, personally, the top consequence was to simply get that smile,” whereas one other famous that “you sort of construct a bond with [the clients] over time… and so they change into like household.”

Many paid caregivers began as unpaid household caregivers, generally for a number of members of the family, earlier than changing into paid caregivers. Paid caregivers described being drawn to caregiving jobs as a result of that they had first skilled taking good care of members of the family, equivalent to grandparents or dad and mom, and have been in a position to “make a distinction” of their shoppers’ lives. One caregiver famous he began caregiving proper out of highschool for his grandmother and found that he loved the work immensely. He continued on to get his caregiver’s certificates, ultimately changing into a house well being aide. One other caregiver took care of his grandmother and his dad earlier than ultimately beginning to work with non-family members on a paid foundation.  

Many members within the household and buddy focus teams reported that they began caregiving as a result of they have been the one individual obtainable to assist. Household caregivers famous that whereas they have been doing this out of affection for the individual they have been caring for, additionally they felt they have been the one individual obtainable to do the work. One participant shared: “it grew to become identified all through the household that [she] was the caregiver, that [she] was the one to name.” Household caregivers additionally shared that they hoped somebody would at some point look after them the best way that they’re caring for others.

All caregivers reported that their jobs have been bodily and mentally demanding.

Individuals in each teams described bodily demanding tasks, with older caregivers reporting that caregiving grew to become more and more tough as they aged. Practically all caregivers described the job as taking a bodily toll on their our bodies and shared bodily well being circumstances that they had developed as a result of calls for of caregiving, together with again ache, knee ache, and general fatigue.One participant who was 58 years previous and recognized with fibromyalgia famous that there have been days the place “[she] feels worse than [he] does,” referring to the liked one she cared for. One other 60-year-old participant described that “it takes an incredible quantity of power to have the ability to do the sort of work that we do,” noting that he not has the bodily capability to do the work.

Individuals in each teams described the mentally demanding tasks, which included watching folks’s circumstances deteriorate over time. Practically all caregivers throughout teams expressed that excited about the long-term prognosis for the folks they cared for was extremely emotionally difficult. Caregivers working with older folks, notably these with dementia, shared that it was tough figuring out that the folks they deal with gained’t get higher, and described the work as “thankless.” Caregivers who cared for youthful kids described the toll of the work as much less bodily demanding however way more emotionally difficult. A paid caregiver defined, “If I’ve a sick baby that’s on the verge of loss of life, that’s actually, actually onerous for me.”

For folks with kids who’re medically advanced or have vital bodily, psychological, or mental disabilities, caregiving goes nicely past the “abnormal” tasks of being a mum or dad. Dad and mom of such kids are sometimes required to offer what the Facilities for Medicare & Medicaid Providers (CMS) describes as “extraordinary care,” which exceeds the vary of actions {that a} mum or dad would ordinarily carry out within the family on behalf of an individual with out a incapacity or persistent sickness of the identical age. Such tasks are sometimes crucial for youngsters to keep away from being positioned in an establishment, which is why Medicaid pays for these providers in some instances. Dad and mom within the focus teams shared fears about what caring for his or her kids would appear like sooner or later, particularly because the dad and mom themselves aged. One participant famous that it was extraordinarily mentally difficult to examine the long run and take into consideration how her son was “at all times going to need to be, both liv[ing] with household or at worst…a bunch residence setting.”

Individuals in each teams famous there have been few assets to assist cope with psychological, emotional, and bodily challenges of caregiving. Most paid caregivers defined that their employers offered restricted emotional and psychological assist. A lot of them relied on assets outdoors of their employer to cope with the calls for of the work, noting examples equivalent to remedy, train, and faith. Household caregivers additionally famous that that they had few assets to deal with the calls for of their work: one participant described the main focus group as their first alternative to open up in regards to the challenges of caring for his or her liked one.

A number of paid caregivers described tough and infrequently unkind remedy from shoppers and their households, including to the psychological challenges of an already tough job. Paid caregivers overwhelmingly described the job as emotionally draining and a few described having to mentally put together for the calls for of the work previous to a shift. A number of described tough conversations with the members of the family of these they look after, explaining that they’re incessantly accused of not correctly caregiving for the household’s liked one. One caregiver defined “When [the patient’s families] do come they may swear you’re not taking good care of their mother or dad appropriately, regardless of not coming round for months at a time.”  A caregiver agreed, describing the caregiver as “caught in between” caring for the affected person and coordinating with tough members of the family who’re emotionally drained and will not perceive the bounds of Medicaid funding.

A number of direct care employees who have been Black reported experiencing racism from shoppers or members of the family of shoppers. These caregivers reported that racial discrimination impacted their capacity to efficiently do their work and added to the psychological challenges of the work. One Black caregiver shared that her aged sufferers generally “don’t need [her] to come back of their residence or deal with them…They like a White caregiver.” These experiences echo findings in KFF’s 2024 survey, wherein greater than half of Black adults responded that racism is a significant downside for employment within the U.S.

For household caregivers, a few of the distinctive calls for stem from the emotional calls for related to caring for a liked one and administrative obstacles to accessing Medicaid HCBS. Practically all household caregivers reported that the work was a difficult obligation, however that they actually needed to keep away from making their family members really feel like a burden. They noticed their roles as fulfilling and applicable duties for members of the family. One participant summed it up: “it’s my mother, she took care of me – so I must deal with her.” Past the emotional challenges, some members described vital administrative obstacles associated to accessing Medicaid HCBS for his or her family members. One participant struggled to navigate the paperwork and complex timelines of guaranteeing their liked one remained enrolled in Medicaid and one other expressed frustration that they weren’t in a position to get permitted for sufficient hours of paid care, which was notably difficult as a result of their liked one wanted assist round the clock.

Caregiving is a fancy balancing act.

Individuals within the paid focus teams described having difficulties balancing work with different tasks, particularly to their very own households. Caregivers described the immense problem of caring for somebody after which, going residence and instantly caring for different members of the family. A number of caregivers famous how they have been typically emotionally and bodily depleted and felt they didn’t have power left to correctly care for his or her kids and spouses. One caregiver described that between her evening shifts at work and her college commitments through the day, she has puzzled whether or not she remains to be being a great mother. One other caregiver agreed and defined, “I’ve a five-year-old and he or she desires to generally play, and generally I don’t have sufficient sleep, generally I’m drained.” Some caregivers had their very own emotionally intense household challenges at residence that they weren’t in a position to present adequate consideration to as a result of lack of emotional and psychological capability after an extended day of caregiving. Some caregivers labored schedules that made it tough to have time with their kids in any respect. One other caregiver described the problem of giving her greatest to her consumer after which “generally not having that power to go and mainly give [her] greatest to [her] residence, [her] kids.” The state of affairs turns into more durable when caregivers’ shifts finish and there’s no one coming to switch them. One caregiver works the evening shift earlier than getting residence to take her youngsters to highschool and daycare. When the day shift employee by no means arrived to switch her one morning, she known as the company solely to be instructed that legally, she may very well be there for 20 hours. She was pressured to decide on between not displaying up for her youngsters or leaving the affected person—who required round the clock care—alone.

Individuals within the household and pals group described difficulties balancing caregiving tasks with self-care. Many household caregivers talked about compromising look after themselves, forgoing train, or medical doctors’ visits to satisfy their caregiving duties. One participant described laying aside mammograms to the purpose of getting to have surgical procedure, noting that “I knew there was one thing incorrect.” She defined that she has had physician appointments scheduled, however one thing would give you her mom and he or she wouldn’t be capable of discover assist in time to attend her scheduled appointment. Household caregivers additionally described elongated intervals after they have been caregiving on their very own with no assist as “overwhelming,” and that splitting the accountability of caregiving with different members of the family helped enormously.

Many household caregivers didn’t have paid caregiving assist to assist steadiness tasks due to a scarcity of belief in paid caregivers, excessive prices, or problem discovering somebody. Some household caregivers defined that they have been reluctant to have paid caregivers assist out as a result of lack of belief in paid caregivers, whereas others have struggled to seek out somebody that matches the wants of their household. One caregiver famous that her grandmother “is choosy….She solely desires to cope with household.” One caregiver described the problem of discovering culturally competent care as a result of her father solely speaks Spanish.

Caregivers in each teams reported struggling to make ends meet and compensation didn’t match the calls for of the work.

Practically all caregivers agreed that their compensation didn’t match the calls for of the work. Individuals typically agreed that the work was not valued as extremely accurately, with one participant noting that “folks pay extra to deal with their animals than they do [for] our aged.” Amongst members, there was no consensus on the precise stage of compensation that was adequate. One participant defined “I really feel such as you’re by no means going to receives a commission sufficient… they smack you, they spit on you…however I really feel like we undoubtedly deserve… a better wage.” In 2023, the Bureau of Labor Statistics reported that the median pay for residence well being and private care aides was $16.12 per hour or $33,530 per 12 months. KFF evaluation discovered that in 2022, 65% of direct care employees made lower than $35,000 yearly.

Some caregivers felt that their low wages mirrored inequitable remedy by employers. One paid caregiver felt underappreciated and indignant when she discovered that one other caregiver serving the identical consumer was being paid $10 extra an hour than she was. One other caregiver described pay disparities throughout the company between administration and the caregivers: “I believe there must be extra fairness, the place the people who find themselves doing the hands-on work must be getting larger wages.” These sentiments expressed by caregivers align with the provisions within the current Medicaid entry rule which requires that not less than 80% of Medicaid funds for sure HCBS be spent on compensation for direct care employees. 

Individuals within the paid teams reported little development in wages over the previous few years regardless of larger prices of residing. Practically all members agreed that inflation and the excessive value of residing mixed with low wages have been inflicting monumental monetary stress of their family. One paid caregiver described that she had been “struggling financially attempting to maintain up with groceries, meals, and fuel,” whereas one other defined having to work two jobs to cope with the impacts of inflation.

Most paid caregivers reported having no paid day off or different advantages. Most caregivers didn’t obtain medical health insurance via their employer and as a substitute relied on different sources for medical health insurance together with Medicaid, the Market, or a partner’s employer-based medical health insurance. Practically half of paid caregivers within the focus teams have been on Medicaid and several other caregivers have been uninsured as a result of they didn’t qualify for Medicaid and thought non-public insurance coverage was too costly. One caregiver defined that she was uninsured as a result of “plenty of these healthcare plans that these jobs provide will not be inexpensive.” A number of caregivers talked about wanting paid day off, given the calls for of their jobs. One participant defined, “The corporate we work for we don’t have trip days, we don’t have day off, we don’t have any medical health insurance, and I don’t assume that’s proper.” One other participant talked about that retirement advantages would even be a great profit to have, explaining “once you attain retirement age, you don’t need to be relying in your youngsters to complement your revenue.”

Some paid caregivers described this work as a steppingstone to a special profession, whereas different caregivers described this profession as extra everlasting, although almost all agreed that there are little to no alternatives for development. A number of of the paid caregivers within the focus teams have been at school and expressed the will to make use of their forthcoming diploma to depart the direct care workforce and go make more cash elsewhere. One paid caregiver who was at school to change into a registered nurse defined “I don’t see myself doing residence well being in the long run. I wish to be like a healthcare administrator in a nursing residence.” One other caregiver described “I’m going to depart this area as a result of clearly it’s underpaid, and I’ve to place my youngsters first.” A number of of those that described this profession as extra everlasting additionally lived in households the place there have been different earners and defined that these different earners have been key to with the ability to proceed their caregiving profession.

Individuals within the household and pals group additionally reported struggling to make ends meet, particularly after they needed to scale back their hours due to caregiving duties. A number of household caregivers needed to scale back their variety of working hours due to caregiving leading to decrease revenue ranges and cautious budgeting. One participant famous that after decreasing their work hours, their family finances bought tighter. Their youngsters have been “with out as a lot as they [were] used to” and the participant “hoped to be making extra money you recognize, in an effort to be saving up for [their] personal retirement.” Some household caregivers reported counting on different members of the family, particularly spouses, to maintain up with family bills. One household caregiver shared that their associate had change into the “main bread winner” of their family. A number of household and buddy caregivers who cared for older members of the family famous that they have been additionally confused about their liked one’s funds.  

Individuals within the household and pals teams who have been receiving funds from Medicaid reported that the Medicaid funds have been decrease than their earnings from different work. A number of household caregivers reported receiving funds from Medicaid, although different household caregivers reported not figuring out that this was an choice obtainable to some household caregivers (Field 2). One caregiver defined that she knew that her dad certified for a part-time paid caregiver via Medicaid, however by no means appeared into whether or not she would be capable of obtain funds, noting “I’m curious to know…if I may since I’m already doing the work.” Those that obtained funds famous that whereas the funds have been useful, they have been inadequate for the work carried out and didn’t offset the impacts of inflation and general prices of residing. One household caregiver reported looking for a special company to work with since totally different companies pay totally different charges.

Focus group members had views about coverage adjustments that might higher assist caregivers.

Practically all caregivers highlighted the significance of elevated wages to assist entry to high-quality paid care, and the forms of insurance policies that may make wage will increase doable, which embrace extra funding for Medicaid HCBS. There was no consensus on a perfect stage of compensation for caregivers, however all focus teams mentioned the necessity for extra Medicaid funding to deal with the inadequate fee charges. Paid caregivers and household caregivers alike believed that Medicaid must be paying extra for paid caregivers. A paid caregiver defined that larger wages would imply that “[he] wouldn’t need to work one other job, and [he] would really be capable of have a greater steadiness with my private life and [his] job.” A household caregiver famous particularly that paid caregivers wanted to be paid extra, saying “our family members should be taken care of as nicely and these folks, they pay them nothing. In order that displays within the care that…[our] family members get.”

Most caregivers thought that larger wages would require extra Medicaid funding, however some caregivers reported that they felt a better share of Medicaid spending may go to wages for direct care employees. A lately finalized rule below the Biden-Harris Administration goals to deal with the latter challenge: Beginning in 2028, states shall be required to make sure that not less than 80% of Medicaid funds for private care, homemaker, habilitation, and residential well being aide providers go to compensation for direct care employees.

Paid caregivers expressed that along with larger wages, they needed higher advantages, coaching, and development alternatives. Paid day off was one of many extra incessantly requested advantages. One paid caregiver beforehand had PTO however misplaced it after switching companies. Individuals expressed that PTO “was a giant assist for [them], simply to have the ability to take a break as a result of [providing] healthcare is taxing in your physique.” A number of paid caregivers believed medical health insurance was an vital profit as nicely, particularly as a result of bodily calls for of their job. One paid caregiver who was uninsured was involved that the bodily calls for of their work would ultimately “take a toll” on them. Caregivers additionally defined that they felt caught on the stage of labor they have been doing and expressed curiosity in profession development alternatives. One paid caregiver mentioned their employer offered truthful wages, however no coaching or development for full-time workers.

Paid and unpaid caregivers alike reported wanting extra helps for the psychological and emotional calls for of caregiving. One paid caregiver mentioned they might be focused on a assist group explaining that the work would “catch as much as them” as they continued within the career. A number of caregivers mentioned they needed emotional assist to higher handle the stress of caregiving. One household caregiver mentioned, “the assist community isn’t there by way of even having an area [to] focus on it with different carers…there’s simply nothing actually there for us to mentally unpack every thing that we have now to cope with.” Overwhelmingly, caregivers needed coverage makers to know that the caregiving work they do is vital and that they deserve truthful pay and truthful remedy.

Past psychological and emotional helps, household caregivers voice assist for insurance policies that would supply them with extra alternatives for coaching, respite care, and reimbursement for his or her time, notably when caregiving tasks rendered them unable to work. Household caregivers famous that they hardly ever obtained particular coaching on the right way to care for his or her family members. They described relying closely on exterior analysis from sources equivalent to Fb or Google to offer them with particular directions on the right way to care for his or her family members. One household caregiver talked about that coaching on time administration would possibly assist them higher handle the demanding schedule of their caregiving duties. Some household caregivers additionally expressed curiosity in respite care to offer them with a break and alleviate the stresses of fixed caregiving. Some household caregivers described methods wherein monetary reimbursement may very well be useful, notably for individuals who needed to scale back their working hours due to caregiving. One caregiver defined that they weren’t conscious that they may probably be paid for his or her position as a caregiver and famous that growing consciousness of these alternatives is vital. A unique caregiver famous that tax exemptions or deductions tax exemptions or deductions may very well be one path to compensating household caregivers who weren’t paid by Medicaid.