Building the Caregiving Workforce by Supporting Family Caregivers

Building the Caregiving Workforce by Supporting Family Caregivers

As we continue our Focus on Caregiving series, we examine the role of family members as part of the “caregiving workforce.” Reliance on family caregivers increased dramatically during the COVID-19 pandemic, as direct workforce shortages and overwhelmed health and long-term care facilities forced individuals to remain at and receive care in their homes and often resulted in gaps in outside care. A recent report noted that unpaid family caregivers nationwide provided 36 billion hours of care, valued at $600 billion, in 2021.  

As states rely on family members for some or all of the care a portion of Medicaid beneficiaries need, there are a number of considerations to ensure those family members are not overburdened and have the support they need. 

Considerations for Minimizing Burdens on Family Caregivers

Medicaid programs often limit the amount of paid caregiving covered when family members may be able to supplement that care. Striking a balance with the family caregiver’s other obligations (work, school, care for other family members, time for sleep and self-care) is critical. Over 60% of family caregivers work full or part-time in addition to the unpaid caregiving they provide to a family member. Family caregivers may also be in school and/or be the caregivers for children, for example, not to mention the need for adequate sleep and for time to attend their own appointments, run errands, etc. 

In determining how much paid caregiving is needed, states often include requirements in their prior authorization processes or documentation requirements asking caregivers to provide proof of their other obligations. These can include a requirement to provide work schedules on employer letterhead, school schedules for themselves or other children in the home, or to document changes in their health (which change their unpaid caregiving abilities) signed by a physician. Unfortunately, these requirements can put a burden on already strained caregivers and, as a result, some states are exploring ways to reduce these strains, while still ensuring the obtain the information they need and meeting State and Federal rules.  

One option is to use the documentation regarding the caregiver’s willingness, availability, and schedule already required as part of the comprehensive assessment under the Federal Medicare Conditions of Participation (COP) rather than requiring separate documentation. Using this already-required documentation will reflect the frequent changes that unpaid caregivers go through and can provide a more accurate reflection of their ability to be unpaid caregivers, as well as the need for paid support from Medicaid for the individual receiving services.  

States are also moving to incorporate a more complete consideration of the time needs of unpaid caregivers, understanding that every moment they are in the home cannot reasonably be spent providing care to their family member. For example, making accommodations for an adequate amount of sleep time, with the standard being 8 hours per night. Another consideration is the time needed to get ready for a job or school outside the home, travel time to and from work or school outside of the home, and time spent outside the home on errands, such as grocery shopping and medication pick-up. Additionally there is time spent for the caregiver to attend to their personal appointments, activities, or the activities and needs of other family members, including but not limited to children. All of these obligations and needs should be considered when determining how much time they have available to care for a family member, and how much paid care the individual will need to meet their needs. 

Support for Family Caregivers 

States are also moving toward providing family caregivers with support, including compensating family caregivers for the services they provide just as other caregivers are. There are Federal and State limitations with respect to how and under what circumstances family caregivers can be compensated under Medicaid. Whether states may receive Federal Medicaid match funding to directly compensate family caregivers depends on the type of services provided, and under what Medicaid authority, provider requirements (including licensure and training requirements), and applicable State law. During the pandemic, states relied heavily on temporary federal flexibilities, including Section 1135 Waivers and Appendix K Amendments to Home and Community-Based Services (HCBS) 1915(c) Waivers and Section 1115 Demonstration Waivers, to provide additional support to family caregivers. At the end of the COVID-19 public health emergency, at least 23 states opted to enshrine these flexibilities through longer-term waiver amendments or State law in order to continue paying family caregivers, including parents, spouses, and legally responsible individuals. 

States may compensate family caregivers for provision of Medicaid State Plan services, including personal care services (hands-on services that assist individuals with activities of daily living) and home health services (e.g., home health aide services, skilled nursing services) but within prescribed limitations. Under Federal law, Federal Medicaid funding is not available to compensate legally-responsible family members for providing personal care services. The term “legally responsible individual” varies from state-to-state, but usually is defined to include spouses and parents of minor children. Federal Medicaid funding is available for State compensation of other family caregivers providing Medicaid State Plan personal care services as long as they are “qualified” to provide such services, and subject to State provider qualifications, State oversight of caregiver payment, and necessity of family caregiver care.  

On the other hand, states may compensate family caregivers, including legally-responsible individuals, for provision of Medicaid State Plan home health services with Federal match funding as long as they work for a home health agency and are otherwise qualified to provide such services (e.g, meet provider training, competency, and licensure requirements). Arizona, for example, permits family members, including parents and guardians, to provide home health aide services so long as the individual is a licensed nursing assistant and employed by a certified home health agency. 

States more frequently seek 1915(c) Waiver authority to support family caregivers, as this authority provides states with greater flexibility to provide compensation. Under such waivers, states may compensate family caregivers, including legally responsible individuals, for provision of personal care services that are deemed “extraordinary care.” In order to receive Federal funding to compensate family caregivers under such waivers, states must indicate in their waivers the types of legally responsible individuals and the services that qualify for compensation, what qualifies as “extraordinary care,” limitations on services, as well as State oversight policies and procedures with respect to paid family caregivers. 

Several states support family caregivers through Medicaid structured family caregiving (SFC) services, a bundle of services typically provided under 1915(c) Waivers to the caregivers of waiver service recipients. States have the flexibility under these waivers to define what caregivers are eligible for these services:  

• • • Georgia permits relatives (but not legally responsible adults) to be caregivers;
    • Missouri allows relatives (including spouses) and legal guardians to be caregivers; 
    • South Dakota permits relatives and non-relative fictive kin (individuals who are not related to birth, adoption or marriage but have an “emotionally significant relationship” with the individual) to be caregivers. 

Family caregivers are compensated directly by SFC agencies (frequently home health agencies), which hold caregivers accountable and ensure they satisfy training and other State qualification requirements. 

Many states also provide other types of support to family caregivers in addition to financial compensation. These include caregiver assessments to determine specific needs (both of caregiver and care recipients), training, outreach and educational resources, and respite and back-up support. New York has also developed the Caregivers in the Workplace guidance for businesses, which educates employers about the role of working caregivers and the kinds of employment policies employers can adopt to better support them.  

Several states, including CA, CO, and TX, have also developed Master or Strategic Action Plans for Aging. These plans provide roadmaps for the state to sustainably and equitably support people as they age and include goals and strategies to support family caregivers, such as providing family caregivers with paid family leave and virtual care support, increasing access to stress reducing and wellness services for family caregivers, and caregiving campaigns to increase awareness of services and supports available to family caregivers.  

As we continue our Focus on Caregiving series, we examine the role of family members as part of the “caregiving workforce.” Reliance on family caregivers increased dramatically during the COVID-19 pandemic, as direct workforce shortages and overwhelmed health and long-term care facilities forced individuals to remain at and receive care in their homes and often resulted in gaps in outside care. A recent report noted that unpaid family caregivers nationwide provided 36 billion hours of care, valued at $600 billion, in 2021.  

As states rely on family members for some or all of the care a portion of Medicaid beneficiaries need, there are a number of considerations to ensure those family members are not overburdened and have the support they need. 

Considerations for Minimizing Burdens on Family Caregivers 

Medicaid programs often limit the amount of paid caregiving covered when family members may be able to supplement that care. Striking a balance with the family caregiver’s other obligations (work, school, care for other family members, time for sleep and self-care) is critical. Over 60% of family caregivers work full or part-time in addition to the unpaid caregiving they provide to a family member. Family caregivers may also be in school and/or be the caregivers for children, for example, not to mention the need for adequate sleep and for time to attend their own appointments, run errands, etc. 

In determining how much paid caregiving is needed, states often include requirements in their prior authorization processes or documentation requirements asking caregivers to provide proof of their other obligations. These can include a requirement to provide work schedules on employer letterhead, school schedules for themselves or other children in the home, or to document changes in their health (which change their unpaid caregiving abilities) signed by a physician. Unfortunately, these requirements can put a burden on already strained caregivers and, as a result, some states are exploring ways to reduce these strains, while still ensuring the obtain the information they need and meeting State and Federal rules.  

One option is to use the documentation regarding the caregiver’s willingness, availability, and schedule already required as part of the comprehensive assessment under the Federal Medicare Conditions of Participation (COP) rather than requiring separate documentation. Using this already-required documentation will reflect the frequent changes that unpaid caregivers go through and can provide a more accurate reflection of their ability to be unpaid caregivers, as well as the need for paid support from Medicaid for the individual receiving services.  

States are also moving to incorporate a more complete consideration of the time needs of unpaid caregivers, understanding that every moment they are in the home cannot reasonably be spent providing care to their family member. For example, making accommodations for an adequate amount of sleep time, with the standard being 8 hours per night. Another consideration is the time needed to get ready for a job or school outside the home, travel time to and from work or school outside of the home, and time spent outside the home on errands, such as grocery shopping and medication pick-up. Additionally there is time spent for the caregiver to attend to their personal appointments, activities, or the activities and needs of other family members, including but not limited to children. All of these obligations and needs should be considered when determining how much time they have available to care for a family member, and how much paid care the individual will need to meet their needs. 

Support for Family Caregivers 

States are also moving toward providing family caregivers with support, including compensating family caregivers for the services they provide just as other caregivers are. There are Federal and State limitations with respect to how and under what circumstances family caregivers can be compensated under Medicaid. Whether states may receive Federal Medicaid match funding to directly compensate family caregivers depends on the type of services provided, and under what Medicaid authority, provider requirements (including licensure and training requirements), and applicable State law. During the pandemic, states relied heavily on temporary federal flexibilities, including Section 1135 Waivers and Appendix K Amendments to Home and Community-Based Services (HCBS) 1915(c) Waivers and Section 1115 Demonstration Waivers, to provide additional support to family caregivers. At the end of the COVID-19 public health emergency, at least 23 states opted to enshrine these flexibilities through longer-term waiver amendments or State law in order to continue paying family caregivers, including parents, spouses, and legally responsible individuals. 

States may compensate family caregivers for provision of Medicaid State Plan services, including personal care services (hands-on services that assist individuals with activities of daily living) and home health services (e.g., home health aide services, skilled nursing services) but within prescribed limitations. Under Federal law, Federal Medicaid funding is not available to compensate legally-responsible family members for providing personal care services. The term “legally responsible individual” varies from state-to-state, but usually is defined to include spouses and parents of minor children. Federal Medicaid funding is available for State compensation of other family caregivers providing Medicaid State Plan personal care services as long as they are “qualified” to provide such services, and subject to State provider qualifications, State oversight of caregiver payment, and necessity of family caregiver care.  

On the other hand, states may compensate family caregivers, including legally-responsible individuals, for provision of Medicaid State Plan home health services with Federal match funding as long as they work for a home health agency and are otherwise qualified to provide such services (e.g, meet provider training, competency, and licensure requirements). Arizona, for example, permits family members, including parents and guardians, to provide home health aide services so long as the individual is a licensed nursing assistant and employed by a certified home health agency. 

States more frequently seek 1915(c) Waiver authority to support family caregivers, as this authority provides states with greater flexibility to provide compensation. Under such waivers, states may compensate family caregivers, including legally responsible individuals, for provision of personal care services that are deemed “extraordinary care.” In order to receive Federal funding to compensate family caregivers under such waivers, states must indicate in their waivers the types of legally responsible individuals and the services that qualify for compensation, what qualifies as “extraordinary care,” limitations on services, as well as State oversight policies and procedures with respect to paid family caregivers. 

Several states support family caregivers through Medicaid structured family caregiving (SFC) services, a bundle of services typically provided under 1915(c) Waivers to the caregivers of waiver service recipients. States have the flexibility under these waivers to define what caregivers are eligible for these services:  

• • • Georgia permits relatives (but not legally responsible adults) to be caregivers; 
    • Missouri allows relatives (including spouses) and legal guardians to be caregivers; 
    • South Dakota permits relatives and non-relative fictive kin (individuals who are not related to birth, adoption or marriage but have an “emotionally significant relationship” with the individual) to be caregivers. 

Family caregivers are compensated directly by SFC agencies (frequently home health agencies), which hold caregivers accountable and ensure they satisfy training and other State qualification requirements. 

Many states also provide other types of support to family caregivers in addition to financial compensation. These include caregiver assessments to determine specific needs (both of caregiver and care recipients), training, outreach and educational resources, and respite and back-up support. New York has also developed the Caregivers in the Workplace guidance for businesses, which educates employers about the role of working caregivers and the kinds of employment policies employers can adopt to better support them.  

Several states, including CA, CO, and TX, have also developed Master or Strategic Action Plans for Aging. These plans provide roadmaps for the state to sustainably and equitably support people as they age and include goals and strategies to support family caregivers, such as providing family caregivers with paid family leave and virtual care support, increasing access to stress reducing and wellness services for family caregivers, and caregiving campaigns to increase awareness of services and supports available to family caregivers.