Family caregivers — relatives, friends, or neighbors who provide informal and typically unpaid care for individuals who are older, sick, or with disabilities — are navigating new terrain during the COVID-19 pandemic as they struggle to provide care in the middle of increased safety precautions, service disruptions, and the sudden loss of formal caregivers. These individuals face new challenges in balancing their time, finances, and resources as they work through economic strains and increased caregiving responsibilities — including for some, having to remove care recipients from long-term care facilities due to potential increased risk of COVID-19 exposure in these settings. Many states are seeking to support family caregivers in the current environment, including finding ways to pay them for the care they provide. This includes using Appendix K — an addendum that allows for temporary modifications to an existing 1915c waiver — to guarantee continuity of services during the pandemic.
- A quick note on family caregivers. Family caregiving is a common and often personal experience that has no uniform approach or standard. Who caregivers are and the nature of their responsibilities depends on a variety of factors — including but not limited to their age, location, relationship to the care recipient, and the care recipient’s needs. They may help with personal care activities like bathing, dressing, grooming, etc., or provide support with housework, errands, and transportation. They may also oversee health care routines, such as scheduling appointments, managing medications, assisting with medical and therapeutic tasks, and serving as a health advocate. Although some caregivers may not think of themselves as one, family caregivers are valuable and often instrumental — especially for those needing long-term care — in allowing individuals to remain living at home and in the community rather than in institutional settings.
- Family caregiver pay under Medicaid. There are options through Medicaid state plans and waiver programs to get paid as a family caregiver, which existed prior to COVID-19. Yet, eligibility, benefits, coverage, requirements, and compensation differ from state to state. For example, while self-directed services allow a Medicaid recipient to choose their providers, which can be family, most states restrict who can be considered a caregiver (in many cases spouses are not allowed) and where the caregiver resides (there may be restrictions around living in the same residence as the care recipient).
- How has COVID-19 impacted family caregivers? The pandemic has affected family caregivers in a number of ways, but a primary obstacle is dealing with its impact on long-term services and supports (LTSS), including access to respite care, adult day care, and formal caregivers like nurses, home health aides, and personal care attendants. Due to worries about exposure to COVID-19, many families are apprehensive about receiving home care from formal providers. Some family caregivers who work outside the home are weighing the risks of forgoing work to lessen the possibility of infection spread. Furthermore, many home-based care services have been restricted due to social distancing measures, limited personal protective equipment for providers, or smaller home health businesses shutting down due to financial losses. Many families also removed their family members from nursing homes and other institutional care facilities given the high risk of the virus spreading among older, frail residents. As a result, many family caregivers are taking on new or more involved roles in managing the health and needs of the care recipient without adequate training or resources to do so. While this increases the stressors on family caregivers in general, the financial strains are of particular concern. For working family caregivers, this can mean taking uncompensated workdays (more than half of caregivers are employed elsewhere) to fulfill caregiving obligations, or, for those who are unemployed, furloughed, or whose hours have been cut, trying to manage expenses with limited or no income at all. In addition, many family caregivers already cover many costs out-of-pocket.
- What is a 1915c waiver? State Medicaid programs often use home- and community-based services waivers (1915c waivers) to pay for formal caregiving supports — including home health aides, personal care attendants, adult day health, respite, and other services — intended to keep people at home and in the community rather than in institutional settings such as nursing homes. Physical distancing and other safety measures brought on by COVID-19, however, have put a temporary hold on these types of supports, leaving family caregivers to fill gaps in care. Many states are using Appendix K, an addendum that allows for temporary modifications to an existing 1915c waiver, to guarantee continuity of services during the COVID-19 pandemic.
- How can Appendix K waivers help family caregivers? Nearly all states have an approved Appendix K waiver and many have included language in waiver provisions to pay family caregivers using Medicaid funds. To date, 37 states are using Appendix K waivers to pay family caregivers for services that would normally be done by aides, direct care workers, or other providers. This reimbursement could provide much-needed support for family caregivers, particularly for those who may no longer be in a position to financially support an individual’s care, or whose options for formal services are now limited.
- What’s the bottom line? Many family caregivers are facing increased challenges as they try to provide care at home for individuals during the pandemic. Reduced access to formal supports and increased strains on family caregiver finances are top concerns, especially during a time of increased layoffs and unemployment. These, combined with concerns about leaving individuals in nursing facilities and institutional care due to high rates of infection, have led many to make difficult decisions when balancing the needs of care recipients and limited resources. As a result, COVID-19 has further underscored the importance of family caregivers and the flexibilities that states have to support them through Appendix K waivers — such as permitting payments to family caregivers with fewer restrictions. As states consider different strategies to support family caregivers amid COVID-19, there may be opportunities to develop more permanent policies related to paid family caregiving, particularly as states think through ways of bolstering the long-term care system post-pandemic.
What Else is Worth Watching?
- Health Insurance Marketplaces are Stepping In: As the economic fallout of COVID-19 continues to impact access to employer-sponsored health insurance, state marketplaces are working to ensure that there are opportunities for the newly uninsured to keep health coverage.
- Tracking Racial and Ethnic Data — State Strategies Amid COVID-19: The racial and ethnic disparities highlighted by the pandemic are reinforcing the role of data in understanding and addressing health disparities. This tool, developed by the National Academy for State Health Policy, tracks which states are recording case and mortality data by race and ethnicity, as well as how that data is being recorded at the local level.
- The Consequences of COVID-19 on Emergency Care: Social distancing and stay-at-home orders have been critical strategies for curbing the spread of COVID-19. However, many hospitals are also experiencing reductions in emergency department visits due to fears of contracting the virus. Although the intention is to remain safe, there can be risks in delaying care.