The COVID-19 pandemic has had an enormous impact on older adults and people with disabilities everywhere, but one area that has not been fully examined is how it affected home- and community-based services (HCBS) systems. This article fills some of that gap and identifies how policy responses to COVID-19 deprioritized HCBS systems. It discusses the implications of this for consumers, providers, and government programs. The authors make recommendations for action to prepare for and better support HCBS in the future. The article also discusses the urgent need to strengthen the HCBS workforce. COVID-19 exacerbated the long-existing worker shortage, which must be addressed to meet the large and growing demand for HCBS.
home- and community-based services, HCBS, policy responses, worker shortage, long-term services and supports, LTSS, COVID-19
Covid-19’s deadly arrival in February 2020 in a nursing home in Washington shocked America. The virus quickly spread in nursing homes on the East Coast and then across the country, taking a devastating toll on residents and staff. With so much of the public health and media focus on nursing homes and hospitals, the impact on people receiving long-term services and supports (LTSS) at home has received little attention and still has not been adequately examined. What happened to people and providers in home care, adult day services, and other home and community-based services (HCBS)? We are just now beginning to understand. HCBS recipients may have been less at risk of infection than nursing home residents, but we know that the loss of services and in-person contact many experienced carry consequences. What lessons have we learned? What signals may help us envision a brighter future?
The Pandemic Begins
As COVID-19 arrived in the United States, states and localities began to close adult day services centers and other congregate community-based LTSS sites to contain COVID-19 infections and prevent the virus’ spread (ADvancing States, 2020). Some states and localities also placed restrictions on the provision of in-home care, including home health and personal care services. Length of closures varied, with some lasting only a few weeks and others lasting into 2021. The absence of in-person services led some HCBS providers to close permanently. A lack of federal data, which we discuss later, make it difficult to quantify closures, but based on state-level surveys and media reporting, we know that providers closed and that those closures were and remain a burden on the people they served and their families. The initial literature on COVID-19 and LTSS identifies several disparities by race and ethnicity, including in HCBS (Shippee et al., 2020).
Larger care settings, including nursing homes, saw a more coordinated response from the federal government. This discrepancy—a centralized response for nursing homes, and a fragmented, delayed, or nonexistent response for HCBS—is a persistant problem of the pandemic. We identify instances where this occurred and recommend how to ensure prioritization of HCBS recipients and providers in the future.
HCBS Closures: Consumer Impact
A natural outcome of closed community-based settings and suspended in-person care is worse outcomes for people who need that support and rely upon HCBS. In the absence of national data, we look to state-level data to highlight the impact of a lack of HCBS on people who received that support before the pandemic.
In Ohio, five in six adult day program directors reported that “participants had to move to higher and more expensive levels of care such as nursing homes and assisted living facilities” (Gaugler et al., 2021). Sixty-five percent of adult day providers in Minnesota reported similarly, and 80% said at least some of their participants had a loss in cognition, while 88% reported that some participants experienced a loss of mobility (Falck, 2020).
We also consider the literature on LTSS access and utilization before the pandemic. Studies consistently have found that Black and Hispanic older adults are less likely to receive LTSS in a nursing home than are their white counterparts (Thomeer, Mudrazija, & Angel, 2015). Certain HCBS settings serve more diverse populations than nursing homes. For example, Centers for Disease Control and Prevention (CDC) data show that Black, Hispanic, Asian/Pacific Islander (API), Native American, and other non-white adults comprise more than half of the people who receive LTSS at adult day services centers (National Center for Health Statistics [NCHS], 2020). Thus, discussions of the implications for closing adult day services centers necessarily includes the outsized impact on individuals and families from these communities.
Fully quantifying the impact of HCBS loss on participants and their families is an important area for future study, including by race and ethnicity, and could include national surveys, interviews, and claims data analyses.
Public Health Response and HCBS: Consistent Lack of Prioritization
Federal and many state public health responses to COVID-19 did not prioritize HCBS. This included the provision of personal protective equipment (PPE), development of federal guidance, availability of emergency funding, and ultimately vaccine deployment.
In April 2020, the Federal Emergency Management Agency (FEMA) announced it would ship PPE to all Medicare- and Medicaid-certified nursing homes. These shipments included one week’s supply of masks, gloves, eye protection, and gowns, distributed twice in May and July 2020 (FEMA, 2020).
There was no such system-wide provision for people receiving HCBS, or the workers who provide this support. Instead, community-based LTSS providers were forced to rely upon the open market for these critical supplies, navigating high prices, unfamiliar suppliers, and delayed shipment timelines. To be clear, the FEMA shipments provided just two weeks’ worth of PPE to nursing homes, and nursing homes also experienced challenges procuring PPE, but there was at least some federal and system-wide effort made to provide PPE to those facilities that never materialized for their counterparts in home- and community-based settings.
Throughout the pandemic, the CDC issued guidance on various aspects of COVID-19. In early April 2020, the agency issued guidance specific to nursing homes. More than a month later, in late May 2020, guidance followed for direct service professionals and for group homes, geared primarily for those serving people with disabilities. The agency did not publish guidance specific to adult day services until April 2021 (CDC 2020a, 2020b, CDC, 2021). In the absence of specific guidance on providing HCBS during the pandemic, states used health settings guidance as well as general guidance for community-based organizations to inform their own guidance for providers. Any future public health crisis response needs to ensure that HCBS providers have the appropriate, specific guidance they need to support people in their homes and communities.
Upon authorization of the COVID-19 vaccines, the U.S. Department of Health and Human Services (HHS) moved swiftly to provide vaccinations to nursing home residents and staff through the Federal Pharmacy Partnership, through which CVS and Walgreens pharmacies provided nursing homes with on-site vaccination clinics at no cost to the facility (HHS, 2020a).
While this deployment was appropriate, it should have been coupled with—or followed by—similar clinics for HCBS recipients. This did not take place, however, and instead both workers and service recipients needed to procure their own vaccines through their respective state’s prioritization methodologies. Most states included older adults in early waves of vaccine access, but states inconsistently prioritized community-based LTSS workers—sometimes including them early with other healthcare workers, others not at all.
Community-based LTSS providers relied upon the open market for critical pandemic supplies, navigating high prices, unfamiliar suppliers, and delayed shipment timelines.
The early vaccine rollout for community residents was often chaotic, with some states and local entities relying upon internet platforms typically used to sell concert tickets for vaccine appointment sign ups (Morrison, 2021). Appointments usually ran out within minutes of opening, and then to get vaccinated a person needed to show up at a local pharmacy or mass vaccination site. This multistep process presented multiple barriers that could easily stymie an HCBS consumer from getting vaccinated: internet access, quick dexterity to sign up for an appointment, transportation, and walking into or around a vaccination site.
Relying upon the internet in particular could have contributed to inequity in vaccine access, as Black and Hispanic older adults are less likely to have reliable internet access than are white older adults (OATS, 2021). What we need instead for HCBS consumers is a process as simple and legwork-free as what nursing home residents received, particularly as boosters become available.
Onsite clinics and in-home vaccine administration for HCBS participants is one response that would have been helpful. For HCBS, however, these only took place on an ad hoc basis, as opposed to the centralized Federal Pharmacy Partnership program. Some states, like Nevada, helped facilitate clinics in partnership with community pharmacies (Wootton-Greener, 2021). This is a good practice that could be replicated for any future vaccine deployment and would help ensure equitable vaccine access for people who need LTSS no matter where they receive it.
The CARES Act authorized billions of dollars to support healthcare providers navigating the pandemic. With these dollars, HHS created the Provider Relief Fund (PRF) and began to disburse the CARES monies to providers (HHS, 2020b). The order and magnitude of funding, however, reinforced how low HCBS was as a priority. Phase 1 of PRF, $50 billion in total, went to providers based on their Medicare fee-for-service (FFS) billings and were sent to providers automatically in April 2020 with amounts calculated by HHS. Medicare does not reimburse for most HCBS, so providers who only or mostly offer HCBS were not eligible for these dollars.
Instead, the HCBS network had to wait for a later distribution for Medicaid and CHIP providers to apply for funds. Phase 2 payments were first announced in June 2020, were available for just 2% of a provider’s patient care revenue, and required detailed paperwork submitted before any organization could receive funds (HHS, 2020c). While Phase 1 recipients needed to complete paperwork to retain the PRF dollars they received, Medicaid providers like those in the HCBS network faced the extra hurdle of applying for funds before receiving them, while the Medicare billers who received Phase 1 dollars only had to complete paperwork after they received their share of the funds. Ultimately, just $6 billion went to Medicaid and CHIP providers (including and beyond HCBS providers) as of September 2021 (Health Resources & Services Administration, 2021).
The delay and reduced funding from the PRF for HCBS is important because in practice these providers already had limited financial resources to pay their staff, buy PPE, and otherwise position themselves to provide safe and adequate services to HCBS participants. Receiving a smaller share of the PRF on a delayed basis and with more red tape exacerbated this problem and put both HCBS providers and the people they serve on less stable ground than Medicare providers, who received a larger pool of funds on an expedited basis with limited front-end administrative burden. Moving forward, we need to have structures in place ready to deliver emergency support to HCBS that we already have for nursing homes, hospitals, and other healthcare providers. This is something the federal government and state governments can work on now.
Data Collection and Availability, or Lack Thereof
Data availability further underscores the lack of federal attention to HCBS. In May 2020, the CDC and the Centers for Medicare & Medicaid Services (CMS) required nursing homes to submit data on COVID cases, deaths, staff and supply shortages, and other key metrics (CMS, 2020a). This made it relatively easy for researchers and for the public to study the impact of the pandemic on nursing homes in real time and bolstered the case for nursing homes to receive continued PPE allocations, high vaccine priority, and financial support. The lack of federal data on HCBS caused the opposite—we still do not know how many cases or deaths took place among staff and participants, nor are we able to track whether there were enough staff or PPE among settings. We also cannot on a national level quantify for how long HCBS settings were temporarily closed, or how many providers closed permanently.
This lack of data also hinders our understanding of COVID-19 and HCBS through the lens of health equity. The robust data available for nursing homes and other health settings provides insights and trends in those settings by race and ethnicity. For example, nursing homes that primarily serve Black and/or Hispanic residents were more likely to experience early COVID-19 cases and more deaths compared to other facilities. While the same may be true among HCBS settings, the lack of federal data for home- and community settings makes it impossible to fully quantify at the national level.
‘The early vaccine rollout for community residents was often chaotic.’
According to a September 2021 Government Accountability Office (GAO) report, CMS “considered issuing regulations during the emergency requiring states to provide monitoring information about HCBS, as it had done for nursing homes, but decided not to do so,” citing a lack of “infrastructure” within CMS (that exists for nursing homes) to respond to such information from HCBS providers. This is again a structural problem that leaves HCBS behind and that we must remedy with improved data collection practices, including data-sharing with states and other entities that may be able to respond when federal agencies do not.
Medicaid Policy and HCBS
As the pandemic began, CMS took action to empower states to shore up their HCBS networks. This primarily took place via emergency amendments to state HCBS programs, commonly referred to as “Appendix Ks” (CMS, 2020b). These emergency amendments gave states the flexibility to allow for virtual assessments and person-centered planning meetings, to allow services to take place remotely, temporarily increase provider rates, and more.
Most states allowed for remote delivery of HCBS. Instead of having a personal care aide come to the home or an older adult going to a day center, participants would receive a phone or video call from an aide. While remote HCBS can only help so much (e.g., one cannot provide hands-on personal care over Zoom), this flexibility allowed providers to keep HCBS participants engaged, check on participant well-being by phone, and sometimes even arrange for food and supply drop offs. Critically, remote services allowed states to pay providers their full or partial Medicaid rate and help these providers to stay afloat and operational even with in-person services suspended. Without these types of interventions, there could have been even more long-term damage done to HCBS networks nationally.
States also provided financial support to the HCBS network through Appendix K retainer payments, but these were time-limited and included many CMS-imposed conditions that limited their workability (CMS, 2020c). Other common approaches included holding evaluations, assessments, and person-centered planning meetings virtually, expanding what types of services certain providers/individuals can perform, and expanding payments to family caregivers.
While states acted to protect HCBS consumers enrolled in their programs, we do not know the full impact of these emergency measures. The September GAO report raised concerns over the lack of oversight CMS had over these state actions, as well as low oversight at the state and practice levels. The GAO report identifies a key structural need moving forward: reforms to the HCBS emergency amendment program that includes better oversight and monitoring.
HCBS Financial Relief Arrives
The American Rescue Plan Act (ARPA) allowed states to receive a 10-point increase to the percent of Medicaid HCBS spending for which CMS will pay. This is a temporary enhanced match that must be spent in three years ending in March 2024. These enhanced dollars come with conditions that states do not narrow services, restrict eligibility, or cut provider rates until March 2024 or earlier, only if they spend the funds down before March 2024.
States began to submit their proposed spending plans for these funds to CMS in June 2021. Workforce is at the center of what most states have proposed to do with these funds. Most of the initial proposals included increased wages and/or bonus payments for workers, including retention bonuses spread over several months. In these states, workforce payments commonly account for at least half of proposed spending for a state’s share of the ARPA dollars. The frequency and magnitude of these payments underscore the need for better worker pay in HCBS. But money alone will not solve the problem, and additional proposals from states take system-level approaches to increase the number of workers available as well as improve their skills and capabilities.
Several states proposed to use the ARPA funding to develop or bolster HCBS career ladders. Career ladders are an important tool in HCBS workforce development, as they provide workers with tiered levels of training, sometimes specialized in certain areas, and tie completion of training(s) to wage increases. In theory, the worker gets trained, gets paid more, is more likely to stay on the job and the people they support receive better services. Workforce training also comes up in several state proposals, with state agencies looking to develop new training content and pay for workers to receive training (including from community colleges). Each of these and other proposals may help enhance the HCBS workforce. However, it is important to remember that the problems that the ARPA monies seek to address are long-standing and far predate the pandemic.
COVID-19 Exacerbated the Long-Existing LTSS Workforce Crisis
Job categories most central to HCBS and nursing home care—personal care aides, certified nursing assistants, and more—have for several years been close to the top of the Bureau of Labor Statistics’ (BLS) lists of fast-growing jobs (BLS, 2012, 2018), without matching increases in people filling those jobs.
We know anecdotally that vacancy rates are higher than ever and likely to get worse before they get better, as all lower-paying industries compete for workers. One key driver of workforce shortages in the field is the low pay for workers (Tyler et al., 2021). The median hourly wage for these workers ($13.02) is 35% lower than that of workers across all occupations ($20.17) (BLS, 2021). The low pay, little-to-no employee benefits like paid sick leave, and difficult, hands-on work has led to endemic, persistently high turnover in the workforce. More than half of direct care workers across all settings, including HCBS, are Black, Hispanic and/or API. The vast majority are women (Campbell et al., 2021).
‘Federal and many state public health responses to COVID-19 did not prioritize HCBS.’
Recruitment and retention challenges beg the question: Why do we pay direct care workers so little? If worker wages were subject to typical labor market forces, wages for these workers would be going through the roof. These are essential jobs. Demand for HCBS services has been increasing and will only grow over time. But Medicaid is one of the biggest payers, with an enormous market share (Kaiser Family Foundation, 2020), so Medicaid reimbursement rates drive what HCBS providers pay and how they train their staff (Campbell et al., 2020).
We will not come out of this crisis without making significant and long-term investments in this workforce. States have no choice but to increase Medicaid rates for HCBS providers, add requirements and actively monitor what workers are paid and what benefits they receive, create incentives or even penalties related to what training they get.
The pandemic has shown us that most people who need LTSS would be safer in a home- and community-based setting than in a congregant setting. The result will very likely be a continuing decline in nursing home occupancy rates. As nursing homes are “right-sized” to serve only those with short-term needs and/or the highest levels of need, worker wages across all LTSS settings need to be right-sized.
What Comes Next?
As vaccination rates rise, we look ahead to the future of HCBS and how it might reemerge in a “post-COVID” world, whenever that comes about.
One key aspect we know predates the pandemic and has not changed: the ages 65 and older population is growing and getting older. Through 2030, the ages 75 and older population will increase by almost 40% (Flinn, 2020), and there will be fewer family caregivers available to help with LTSS needs (Redfoot et al., 2013). These factors alone will increase demand for LTSS across all settings. The pandemic particularly impacted older adults regardless of where they live. A 2021 study from HHS researchers found that 40% of excess deaths among older adults related to COVID-19 took place in nursing homes, and 60% took place in the community (Tarazi et al., 2021). We must make sure our systems of care can support older adults safely no matter where they live.
At the same time, the COVID-19 pandemic has made clear the systemic problems that have long existed in nursing homes and other institutional settings. As a result, demand for this type of support could decline over the long term even as the overall demand for LTSS increases. Federal data show that nursing home occupancy has not recovered to pre-pandemic levels. Before the pandemic, nursing home bed occupancy was at just over 80%. It has since fallen to about 70% on average, with some state averages below 50% occupancy (CMS, 2021). Continued low demand for nursing home care will only increase the need for strong home- and community-based service options that meets the needs and preferences of all communities.
We must act now to ensure that future needs for LTSS can be met in the home and community. This includes policy reforms at the federal level and how the federal government is positioned to respond to future crises: the provision of supplies and emergency funding to HCBS providers, data and monitoring to improve our understanding of HCBS, and more. It also must entail finally resolving the most critical barriers the field has long faced: financing a well-trained and adequately paid workforce.
Susan C. Reinhard, RN, PhD, FAAN, is AARP’s Senior Vice President directing the Public Policy Institute, and the Chief Strategist of the Center to Champion Nursing in America and Family Caregiving Initiatives at AARP in Washington, DC. She may be contacted at Sreinhard@aarp.org. Brendan Flinn, MPH, is a Senior Policy Advisor with the AARP Public Policy Institute in Washington, DC. Carrie Blakeway Amero, MPAff, is the Director of Long-Term Services and Supports at the AARP Public Policy Institute.
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