Voices of Paid and Family Caregivers for Medicaid Enrollees Receiving HCBS

Key Takeaways

The COVID-19 pandemic has intensified longstanding issues surrounding the unmet need for home and community-based services (HCBS) among seniors and people with disabilities and shortages in the direct care workforce that provides these services. The Biden Administration recently announced that it will require vaccination for staff in Medicaid and Medicare certified home health agencies, along with nursing homes and other health care settings. However, a notable share of direct care workers are vaccine hesitant, so new requirements may exacerbate existing staff shortages.  Efforts to develop policies to expand HCBS and strengthen the direct care workforce have centered on Medicaid as the primary payer for these services. The American Rescue Plan Act (ARPA), passed earlier this year, provides states with a one year 10 percentage point increase in federal Medicaid matching funds (FMAP) for HCBS. Congress is currently debating efforts to build on the ARPA investments as part of an overall budget reconciliation package, and the final funding amount remains in flux as policymakers weigh competing priorities.

To help inform the ongoing debate, KFF conducted four focus groups in July and August 2021 with direct care workers and unpaid caregivers who provide HCBS, assisting seniors and people with disabilities with daily self-care and household activities. These focus groups are not necessarily generalizable to all caregivers, but can provide insight into their experiences to help inform current policy debates. Key findings include the following:

• In addition to physical demands, paid caregivers reported that their jobs had mental demands, which intensified during the pandemic. A number of unpaid family caregivers explained that the mental demands associated with caregiving were often “overwhelming.”
• A number of paid caregivers described regularly experiencing uncertainty about whether they would be able to leave work at the end of their shift due to staffing shortages and scheduling challenges, which were exacerbated by the pandemic. It is unclear how vaccination mandates might contribute to workforce shortages, as participants in the paid direct care worker groups were divided about whether to receive the COVID-19 vaccine. While the majority of those weighing in on this issue were vaccinated, a vocal minority were unvaccinated. Among the unvaccinated, some expressed hesitancy, while at least one said their opposition was strong enough to lead them to leave their job if faced with an employer mandate.
• It is perhaps not surprising, but participants in the paid direct care worker groups universally agreed that their wages are low and do not reflect the demands of their jobs. They described their financial situation as “getting by” and “living paycheck to paycheck.” Those who live in a household with two wage earners universally noted that their spouse was the “primary breadwinner” and observed that their earnings alone were not enough to support a family. Some participants in the unpaid caregiver group said that their caregiving demands made it impossible for them to have paid work.

Introduction

The COVID-19 pandemic has intensified longstanding issues surrounding the unmet need for home and community-based services (HCBS) among seniors and people with disabilities and shortages in the direct care workforce that provides these services. The pandemic has led to service disruptions and permanent provider closures in many states and has magnified staffing shortages due to COVID-19 outbreaks among HCBS enrollees and staff. The Biden Administration recently announced that it will require vaccination for staff in Medicaid and Medicare certified home health agencies, along with nursing homes and other health care settings. However, a notable share of direct care workers are vaccine hesitant, with nearly one-fourth of those providing in-home patient care reporting that they do not plan to be vaccinated, and another 20 percent undecided, in an April 2021 poll by KFF and The Washington Post.

Efforts to develop policies to expand HCBS and strengthen the direct care workforce have centered on Medicaid as the primary payer for these services. The American Rescue Plan Act, passed earlier this year, provides states with a one year 10 percentage point increase in federal Medicaid matching funds (FMAP) for HCBS. President Biden then proposed a landmark $400 billion federal investment in Medicaid HCBS as part of his American Jobs Plan. Funding in the current House bill has been reduced to $190 billion, the majority of which would be available as a permanent seven percentage point FMAP increase for HCBS for states that choose to participate and meet program requirements. This legislation is part of the overall budget reconciliation package, and the final funding amount remains in flux as policymakers weigh competing priorities.

To help inform the ongoing debate, KFF conducted four focus groups in July and August 2021 with direct care workers and unpaid caregivers who provide HCBS, assisting seniors and people with disabilities with daily self-care and household activities. The groups included a total of 24 paid direct care workers and eight unpaid caregivers. Participants worked in a range of job types and cared for people with a variety of disabilities and long-term care needs. We sought diversity in how long people had worked as caregivers, those working full vs. part-time, and racial/ethnic background. We also sought to recruit people primarily serving Medicaid enrollees. All groups were held by online video conference, allowing for participation from states across the country.¹ KFF worked with PerryUndem Research/Communication to conduct the focus groups.

This issue brief presents findings from the focus groups including caregiver characteristics; physical and mental caregiving demands; the impact of workforce shortages; wages, finances, and opportunities for advancement; and what caregivers would like policymakers to know about their work.

Who are caregivers?

The paid direct care workers in our focus groups generally reflect the national data in terms of gender, race/ethnicity, and full vs. part-time work status. Box 1 describes national data about caregiver demographics. Most of our focus group participants are women and included people who identified as white, Black, Hispanic, and Asian. They work in a variety of job types, including home health aides, personal care attendants, direct service professionals (DSPs), and certified nursing assistants, and most work full-time. Workers’ years of experience ranges from less than one to over 25 years, with most having worked between one and five years in the field. Most are employed by provider agencies, though a few worked for state agencies, and some were hired directly by clients who self-direct their Medicaid services.

The direct care worker focus group participants care for people with a range of disabilities and in a variety of community-based settings. Their clients include seniors, including some with dementia; nonelderly adults with physical disabilities such as Parkinson’s disease, cerebral palsy, multiple sclerosis, and spina bifida; children and adults with intellectual or developmental disabilities (I/DD) such as Down’s syndrome and autism; children who are medically fragile; and people with mental illness. They work in individual client homes, group homes, day programs, and schools. The number of clients per week ranged from one to more than five. The vast majority of participants reported that their clients receive services covered by Medicaid.

Many focus group participants who are paid caregivers started as unpaid family caregivers.   Several participants described being drawn to caregiving jobs for their paid employment because they had first experienced taking care of family members (including young children or siblings as well as relatives with disabilities) and/or had seen relatives who worked in paid caregiving jobs and were able to “make a difference” in their clients’ lives. A male direct care worker in Texas observed, “[y]ou have to have a service-oriented, nurturing, caring spirit and be genuinely interested in helping out [the] person. . . that you’re assisting.” A frequently cited attribute for success on the job was “patience.” Others underscored the importance of “social skills,” both in terms of establishing rapport and “creati[ing] a bond with [your] client” and in communicating with family members.

“[S]ome of these patients, they value your company. Like they’re lonely so that’s what gives me the most gratification. . .” – 34-year-old female paid caregiver in New York

Nearly all participants in the unpaid caregiver group were women and described themselves as the primary caregiver for someone receiving Medicaid, typically a family member. This group was about evenly divided between people who identified as white or Black. They care for seniors with physical disabilities and/or dementia, and nonelderly people with autism, serious mental illness, and physical disabilities. Some had paid employment, either full or part-time, in addition to their caregiving responsibilities. They describe Medicaid as helpful in covering doctor visits, prescriptions, medical tests, supplies, transportation, and home health aide services. Transportation to medical appointments and daily supplies such as gloves, wipes, and adult diapers were cited as items that participants would find expensive to cover out-of-pocket without Medicaid. A couple of participants noted that Medicaid home health aide services allowed them to do paid work as well.

Participants in the unpaid family caregiver group experienced a variety of circumstances that led to them assuming their caregiving roles. Some were parents of a child born with I/DD and had been caregiving since their child’s birth and into adulthood. A woman in Florida described the sudden onset of her adult daughter’s caregiving needs:  her daughter had been living on her own and working when she began experiencing symptoms that led to discovery of a brain tumor. She now lives with her mother and requires constant care. Several participants who are caring for aging parents observed that they expected to be caregiving eventually but had not anticipated their parents to need care as soon as they did. Most participants in the unpaid caregiver were not formally trained as caregivers and reported varied experiences with accessing the information and resources they needed to support them in their caregiving roles. Some had one-time training when they began caregiving, while others had no training. Participants generally agreed that information was not easy to find and required time and persistence to pursue. Several cited their family member’s doctor as the most helpful source of information about available resources.

What are the physical and mental demands of caregiving?

Participants in the paid direct care worker groups described daily caregiving work involving a variety of physical demands. Typical tasks include helping clients with eating, bathing, and toileting; preparing meals, doing laundry and other household chores; and managing medications. They described the physical demands of their jobs, including lifting and transferring patients in and out of bed and wheelchairs. Other common job characteristics included long hours and unpredictable schedules.

Participants in the paid direct care worker groups also described their jobs’ mental demands, which intensified during the pandemic. Several said that they “love” their work but also acknowledged that everyone is not well suited for the demands of caregiving jobs. They described the demands of caring for clients with challenging behaviors. They cited increased stress especially in the pandemic’s early days. Participants described the uncertainty of working during the pandemic and fear of infecting their clients or bringing the virus home to infect their families.

Similarly, participants in the unpaid caregiver group recounted a range of daily caregiving duties with a variety of physical demands. They assist with preparing meals, bathing, dressing, running errands, laundry, managing medication, and monitoring to ensure safety and prevent falls. Nearly all participants live with the person for whom they care. Many noted that they “don’t really get breaks” from their caregiving duties. Participants described relying on other family members to fill in when they needed someone to cover their caregiving responsibilities, rather than formal respite care.

Participants in the unpaid family caregiver group also explained the mental demands associated with caregiving, which they often described as “overwhelming.” They described the all-encompassing nature of their caregiving role, which existed prior to the pandemic. Participants described caregiving during the pandemic as “scary,” “extremely busy,” “very stressful,” and “a nightmare.” Several had experienced COVID-19 infections themselves or in their households. A 60 year old woman in Minnesota lost her stepmother to COVID-19, which led to her having to assume caregiving responsibilities for her father.

How are caregivers affected by workforce shortages?

Several participants in the paid direct care worker groups described regularly experiencing uncertainty about whether they would be able to leave work at the end of their shift due to staffing shortages and shifts not being filled if a worker called out. These issues existed prior to the COVID-19 pandemic. A few participants mentioned the toll that working overnight shifts took on their schedules, especially when balancing another job and/or school. Some participants had regular weekly hours, while others said that their schedules changed from week to week, and they did not know their schedule for the upcoming week until a couple of days before the week started.

On the other hand, participants who provide self-directed services said that they and their clients enjoyed the flexibility to decide how to allocate their allotted hours during the week. Self-direction is a service delivery model that typically allows beneficiaries to select and dismiss their direct care workers, determine worker schedules, set worker payment rates, and/or allocate their service budgets.

The COVID-19 pandemic created additional scheduling challenges and intensified pre-existing staffing shortages for paid direct care workers. Participants agreed that COVID-19 led some of their colleagues to leave their caregiving jobs for fear of getting sick themselves or bringing the disease home to a family member and observed that staffing shortages intensified during the pandemic. Those working in group homes found that they had to increase staffing during the day when outside day programs shut down due to stay-at-home orders, and clients were suddenly at home during the day. Participants also underscored that “social distancing is impossible” when helping clients with personal care needs.

Unpaid caregivers also were affected by the pandemic’s disruption of in-home and day program services on which some unpaid caregivers relied so that they could work outside the home. A 56 year old woman in Ohio had to leave her paid employment to care for her adult son with autism after the pandemic began and his day program closed. A 42 year old woman in Florida said that her adult daughter’s home health aide stopped coming during the early days of the pandemic, but services later resumed. A couple of participants noted that they no longer had the same home health aide coming consistently since the pandemic, which created additional disruption and required additional time to orient new aides. Others described discontinuing in-home services during the pandemic due to fear of infection.

It is unclear how vaccination mandates might contribute to workforce shortages, as participants in the paid direct care worker groups were divided about whether to receive the COVID-19 vaccine. While the majority of those weighing in on this issue were vaccinated, a vocal minority were unvaccinated. Among the unvaccinated, some expressed hesitation, while at least one said that their opposition was strong enough to lead them to leave their job if faced with an employer mandate.  A number of participants described contracting COVID-19 themselves or working where there were outbreaks among staff or clients, but these experiences did not necessarily mean that they wanted to be vaccinated. A female paid caregiver in California had just learned that her employer was adopting a vaccine mandate and was preparing to leave her job rather than comply. A female paid caregiver in Maryland who had had COVID-19 said that she did not want to be vaccinated due to “anxiety” and seeing family members who were vaccinated experiencing breakthrough infections. A female paid caregiver in Missouri said that she did not want the COVID-19 vaccine after becoming ill when she received a flu vaccine. Participants noted that clients increasingly were requesting workers who are vaccinated to fill open shifts. Unlike the division among participants in the paid caregiver groups, those in the unpaid family caregiver group generally were supportive of vaccination.

Participants in the paid direct care worker groups who were vaccinated cited the benefits they saw for themselves as well as their clients. A male paid caregiver in Texas who has diabetes reported getting vaccinated as soon as he was eligible, while a female paid caregiver in New Jersey said that she felt comfortable getting the vaccine after doing her own research and preferred that route to getting vaccinated through her employer. One paid caregiver in Texas working with immune compromised children was frustrated that some families were not getting vaccines despite additional risks to their children

How do caregivers feel about their wages, overall finances, and opportunities for advancement?

Perhaps not surprisingly, participants in the paid direct care worker groups universally agreed that their wages were low and did not reflect the demands of their jobs. They described their financial situation as “getting by” and “living paycheck to paycheck.” Those who live in a household with two wage earners universally noted that their spouse was the “primary breadwinner” and observed that their earnings alone were not enough to support a family. Some noted that they had been able to earn additional money by picking up extra hours during the pandemic when colleagues called out, though they also noted the additional stress of working more long shifts. On the other hand, one woman described the financial challenges her family faced during the pandemic when her husband was out of work and their income was limited to her caregiving wages. Full-time employees generally reported access to employer-sponsored health insurance, and some employers offered retirement savings plans. Some but not all had paid vacation days, and most did not have paid sick leave.

Participants in the paid direct care worker groups generally did not receive raises and expressed the desire to have good job performance recognized with wage increases. Those who had asked for raises generally reported that their employers said that this was not feasible due to low Medicaid reimbursement rates. A 24 year old female paid caregiver in Pennsylvania who had been working at her employer for four years said that small hourly increases were available based on an annual evaluation:  “based on your performance, they’ll give you like maybe an extra 30 cents an hour, an extra 20 cents.” She reported that her employer had been in business for 17 years, and during that time the starting hourly rate had increased only from $9 to $10.

Participants in the paid direct care worker groups are interested in opportunities for training that lead to wage increases and the ability to advance in their careers. Some participants said that their employers offered online or in-person training on topics such as safe lifting practices, allergy management, and tracheotomy and gastrointestinal tube care and that they were paid for their training time. However, these trainings did not appear to be tied to wage increases or career advancement, and most participants did not feel that their jobs offered a career ladder to higher wages based on increased skills or job responsibilities.

Some participants in the unpaid caregiver group have paid employment in addition to their caregiving, while others said that their caregiving demands made it impossible for them to work. Those that are working often described their outside jobs (often from home) as a break from caregiving, though they also noted difficulty in balancing their paid employment with their caregiving responsibilities. A 42 year old woman in Florida who cares for her adult daughter noted that she lost a job due to her inability to focus, which led to mistakes, because she was preoccupied with her daughter’s needs. Others agreed with her description of “always being in caretaker mode.” She has now found another job but noted that she is unable to go to work or take her younger daughter to school if the home health aide for her adult daughter does not show up on time. A 44-year-old woman in Illinois who cares for her adult brother with serious mental illness and a brain tumor said that her caregiving responsibilities only allowed her to work part-time.

What is Congress considering to support caregivers and what do caregivers want policy makers to understand?

The Congressional debate about the overall budget reconciliation package and the amount of new federal funding for Medicaid HCBS is continuing. President Biden proposed $400 billion in new federal funds for Medicaid HCBS, while the current House bill includes $190 billion. Box 2 describes key provisions of the new funding as they relate to paid and unpaid caregivers.

Participants in the paid direct care worker groups cited improving wages as the top issue for policymakers to address. There was a general feeling of being “overworked and underpaid,” which existed prior to the pandemic. Participants emphasized the importance of any reimbursement rate increases being passed through to direct care worker wages. Participants also supported increased training, especially if tied to career advancement and higher wages, and access to the equipment and supplies they need to perform their jobs safely.

Participants in the unpaid caregiver group asked for recognition of the value of the services that they provide for their family members. They all said that they wanted to keep their family members at home and were willing to provide the caregiving necessary to avoid having them institutionalized. At the same time, they did not think that people who have not had the experience of family caregiving fully understand the challenges it presents. One suggested providing tax credits to family caregivers to recognize that in-home care is less expensive than nursing home care. Other suggestions included additional opportunities for community integration and a centralized website with current information about caregiver supports. They also emphasized that policies should be flexible enough to recognize that each person has unique needs to be met and administrative burdens to access services should be minimized.

Looking Ahead

The COVID-19 pandemic has intensified long-standing issues related to the unmet need for HCBS, such as growth in the aging population and direct care workforce shortages. Many states used Medicaid emergency authorities to support HCBS providers during the pandemic by increasing reimbursement rates and/or offering retainer payments. CMS guidance encourages states to identify any temporary policy changes adopted under emergency authorities that increased access to HCBS and to consider making those changes permanent. However, states’ ability to do so could be limited by budgetary constraints. While the American Rescue Plan Act provides a temporary increase in federal matching funds for Medicaid HCBS, the expiration of this increase after one year could limit states’ ability to adopt longer-term HCBS program expansions.

Congressional debate about the overall budget reconciliation package and the amount of new federal funding for Medicaid HCBS is continuing. President Biden proposed $400 billion in new federal funds for Medicaid HCBS, while the current House bill includes $190 billion.

The major HCBS program in the bill would increase federal matching funds, without a time-limit, for state spending on Medicaid HCBS. To qualify for the new funds, states would have to take certain actions, a number of which are relevant to addressing issues raised by caregivers in our focus groups. For example, states would have to review, and update as necessary, HCBS provider reimbursement rates every three years, and any rate increases would have to be passed through to direct care workers. These actions could help to address issues with low wages cited by focus group participants. To receive the new funds, states also would have to develop training opportunities for paid HCBS providers as well as for unpaid family caregivers, which could help to address needs in these areas expressed by focus group participants. Another set of activities under the new program centers on states providing supports to family caregivers, such as respite care, caregiver assessments, peer supports, or payment as providers. Participants in the unpaid caregiver group cited these areas as gaps in which additional resources and supports are needed. How much the reconciliation package does to address the concerns raised by caregivers will depend in large part on the level of funding committed. There is pressure to reduce the overall price tag in the package, and planned HCBS expansions could be reduced further as they compete with other priorities.