The Landscape of State Policies Supporting Family Caregivers as Aligned With the National Academy of Medicine Recommendations

Abstract

Policy Points.

• In the absence of federal policy, states adopted policies to support family caregivers, but availability and level of support varies.

• We describe, compare, and rank state policies to support family caregivers as aligned with National Academy of Medicine recommendations.

• Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended, and benefit restrictions hinder accessibility for all types of family caregivers.

• Implementing policies supporting family caregivers will become more critical over time, as the reliance on family caregivers as essential providers of long‐term care is only expected to grow as the population ages.

Context

In the United States in 2020, approximately 26 million individuals provided unpaid care to a family member or friend. On average, 60% of caregivers were employed, and they provided 20.4 hours of care per week on top of employment. Although a handful of patchwork laws exist to aid family caregivers, systematic supports, including comprehensive training, respite, and financial support, remain limited. In the absence of federal supports, states have adopted policies to provide assistance, but they vary in availability and level of support provided. Our objectives were to describe, compare, and rank state policies to support family caregivers over time.

Methods

We used publicly available data from the AARP Long‐Term Services and Supports State Scorecard, the National Academy for State Health Policy, and Tax Credits for Workers and Families for all 50 states and the District of Columbia (2015‐2019).

Findings

We found that states had increased supports to family caregivers over this five‐year period, although significant variability in adoption and implementation of policies persists. Approximately 20% of states had enacted policies that exceed the federal Family and Medical Leave Act requirements, and 18% offered paid family leave. However, most states had not improved spousal impoverishment protections for Medicaid beneficiaries. For example, from 2016 to 2019, 24% of states provided fewer or no protections, while 71% of states did not improve spousal impoverishment protections over time. Access to training for caregivers varied based on eligibility criteria (e.g., select populations and/or only co‐residing caregivers).

Conclusions

Overall, state approaches to support family caregivers vary by eligibility and scope of services. Substantial gaps in support of caregivers, particularly economic supports, persist. Although the landscape of state policies supporting caregivers has improved over time, few states provide financial supports as recommended by the National Academy of Medicine, and benefit restrictions hinder accessibility for all family caregivers.

Family caregivers play a critical but often unsupported or undersupported role in delivering long‐term services and supports (LTSS) in the United States. In 2020, an estimated 26 million individuals provided unpaid care to a family member or friend. ¹ Family caregivers provide care in the form of LTSS, including assistance with activities of daily living (e.g., bathing, toileting) and instrumental activities of daily living (e.g., managing money), as well as supervision of their care recipients. ² Family caregivers may also provide more complex clinical care support, such as medication management. ² In 2019, 60% of caregivers provided assistance for at least one activity of daily living, and employed caregivers provided, on average, 20.4 hours of care. ² Yet, family caregivers are often unrecognized as members of the health care team. ³ , ⁴ In 2017, family caregivers provided an estimated 34 billion hours of care, with the estimated economic value of unpaid family caregivers far outstripping the total expenditures of the primary payer for LTSS in the United States at $470 billion, ⁵ compared to $124 billion. ⁶

The US Congress has passed several laws to support family caregivers, but financial support remains limited. In 1993, Congress passed the Family and Medical Leave Act (FMLA), which provides workers with up to 12 weeks of unpaid leave to provide care for a family member. Eligibility is limited to workers employed for at least one year at an eligible company (all public companies, most federal employees, and private companies employing ≥50 employees in ≥20 workweeks in the current or previous calendar year). ⁷ As such, FMLA is not a universal work benefit, and only approximately 60% of workers are eligible for FMLA. Yet eligible workers may not take unpaid leave under FMLA due to the resulting income loss. ⁸ , ⁹ As of 2020, several additional laws were passed to support family caregivers, but FMLA remains the primary federal policy protecting (a subset of) caregivers, defined as those caring for a spouse, child, or parent. The United States is the only country in the Organisation for Economic Co‐operation and Development that does not offer annual leave entitlement—that is, paid time off—to support family caregivers. ¹⁰ The sole federal program systematically financially supporting family caregivers is restricted to eligible caregivers of veterans and is administered by the Veterans Health Administration (VHA). The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides a monthly stipend ($600‐$2,300 per month pre‐2020), health insurance, required and optional training (e.g., wound care), respite, peer mentoring, self‐care courses, and mental health services to eligible caregivers of veterans.

Similar to financial supports for caregivers, few federal supports exist to provide systematic training and respite to family caregivers. In 2000, Congress passed the Older Americans Act Amendments of 2000 (Pub L 106–501) to establish the National Family Caregiver Support Program, which funds states’ initiatives to support family caregivers (e.g., training), yet these efforts are generally underfunded. ¹¹ Then, in 2006, the Lifespan Respite Care Program, under Title XXIX of the Public Health Service Act, was authorized to provide “community‐based respite care services for family caregivers.” ¹² In 2011, the Government Accountability Office evaluated life span respite care programs and found states mostly used funds for “respite care provider training, the development of respite care provider registries, public awareness and education initiatives, and improving coordination” among organizations providing respite. With demographics in the United States shifting toward an older population with fewer adult children available to provide unpaid caregiving and a higher proportion of family caregivers in the labor force, ⁵ the need for policies to support caregivers, particularly working caregivers, is critical.

State approaches to support family caregivers vary with regard to caregiver/care‐recipient eligibility and services offered. States have several mechanisms by which they can support caregivers, and these mechanisms can change over time. For example, states can use Medicaid Section 1915 waivers, designed to provide for home‐ and community‐based services, to support caregivers of those who qualify for services under specific waivers. ¹³ Medicaid Section 1115 demonstration waivers are another mechanism by which caregivers may be supported, but these initiatives, such as the Balancing Incentive Program, may require state budget neutrality. States can also legislate tax incentives (e.g., deductions or credits) for family caregivers. Additionally, AARP encourages states to implement Caregiver Advise, Record, Enable (CARE) Act legislation, which requires “hospitals to: record the name of the family caregiver on [the patient's] medical record; inform the family caregivers when their loved one is to be discharged; and provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.” ¹⁴ In 2014, Oklahoma was the first state to pass CARE Act legislation. By 2020, 43 states had passed CARE Act legislation (Barbara Given, PhD, RN, FAAN, FAPOS, personal communication, November 2019). Finally, states may also provide unpaid or paid leave protections exceeding FMLA requirements.

In 2016, the National Academies of Sciences, Engineering, and Medicine (NASEM) released a report, Caring for an Aging America, which examined the prevalence, supports, and challenges of caregiving. ¹³ The report included multiple policy recommendations, including for “state governments that have yet to address the health, economic, and social challenges of caregiving for older adults [to] learn from the experience of states with caregiver supports and implement similar programs.” These recommendations constitute the evidence‐based consensus of the committee and are subject to peer review and approval by NASEM. ¹³ Policies supporting family caregivers’ health, economic, and social needs were identified by seven interrelated components¹³:

1. identify family caregivers and assess/support their needs to deliver care to the patient;

2. reform provider payments to engage family caregivers in delivering care to the patient;

3. train and conduct capacity building of health care providers to engage family caregivers and provide evidence‐based supports and referrals to community services;

4. increase funding to existing supports for family caregivers and toward evidence‐based caregiver intervention programs;

5. explore, evaluate, and, as warranted, adopt federal policies that provide economic support for caregivers;

6. expand data collection to facilitate capturing experiences of family caregivers; and

7. evaluate caregiver interventions across communities in real‐world settings. ¹³

Ultimately, the report called for system reforms to better identify and support family caregivers to ultimately improve person‐centered care by enhancing family‐centered care. ¹³

In 2017, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, which tasked the Department of Health and Human Services with developing a national family caregiving strategy, as aligned with recommendations from the National Academy of Medicine (NAM). ¹³ In October 2021, an initial report to Congress included 26 recommendations to provide a foundation for a national strategy. The recommendations focus on increasing awareness of caregivers, integrating caregivers into health care systems and processes; broadening access to services; strengthening financial supports; and improving data collection on caregiver experiences, as aligned with the NAM recommendations just described. ¹³ , ¹⁵ Our objectives are to describe and compare state policies and trainings to support family caregivers over time. Finally, we rank states’ alignment with the policy recommendations based on provision and expansion of support services and policies.

Notably, we focus on support services for older adults and do not specifically address family caregivers of children with intellectual and/or physical disabilities. We made this decision because of the critical differences in infrastructure supporting families caring for children versus adults. Also, we do not account for community organizations providing support to family caregivers, such as religious organizations, Wounded Warriors, and others. These organizations serve an important role in the support of family caregivers in the absence of systematic supports. However, due to the extreme heterogeneity in identifying and systematically comparing organizations and the populations served across states, we do not include them and other non‐state‐level organizations (e.g., county‐level agencies and private nonprofits) in the analysis. Although important, the scope and reach of community‐based organizations may not keep pace with the demand for caregivers and/or be comparable to other state‐level policies. Finally, we do not examine policies enacted during the SARS‐CoV‐2 pandemic to improve leave policies for workers, given that most of these policies were term limited.

As the demand for family caregivers increases, there is increased attention on policies supporting family caregivers. Describing the landscape of state policies supporting family caregivers and the alignment of policies with national recommendations provides important context for policymakers to formulate future policy reforms to address outstanding gaps in supports and to examine the outcomes among states enacting policies aligned with recommendations.

Methods

Using publicly available data sources, we described state policies that support family caregivers and that align with the recommendations from Caring for an Aging America (see Appendix A for complete policy recommendations). We identified the supporting caregivers and person‐ and family‐centered care domains from the AARP Long‐Term Services and Supports (LTSS) State Scorecard as aligned with the recommendations from Caring for an Aging America. Additionally, we identified the provision of state‐level dependent care tax credits and trainings for caregivers through Medicaid waivers a priori as policies also aligned with the recommendations to support family caregivers.

Data Sources and Policy Metrics

We used four publicly available data sources for the 50 states and the District of Columbia (n = 51). First, we used the AARP LTSS State Scorecard 2020, which describes policies supporting family caregivers of older adults and people with physical disabilities and ranks states with regard to high‐low levels of policies supporting family caregivers. ¹⁶ Policies supporting family caregivers were captured through the following domains: supporting caregivers; person‐ and family‐centered care; nurse delegation and scope of practice; and transportation policies. We extracted data from the supporting caregivers and person‐ and family‐centered care domains. Specific state policies examined include family and medical leave above federal requirements under FMLA; mandatory paid family leave; mandatory paid sick days; flexible use of sick leave; unemployment insurance; protection for family caregivers from employment discrimination; financial protection for spouses of Medicaid beneficiaries who receive home‐ and community‐based services (HCBS); assessment of family caregiver needs; and passing legislation aligned with the CARE Act. ¹⁶ To capture the degree of supporting policies, the AARP state scorecard presents state scores on a continuous scale. Across all policies examined, a higher score corresponds to a state offering a supporting policy and/or greater intensity/prevalence of support. For example, the extent to which a state provides family and medical leave above federal requirements is determined based on “requirements for covered employers, covered employee eligibility, covered relationships, and length of leave allowed” with a potential maximum score of 4, where a higher score indicates greater support. ¹⁶

Second, we incorporate state‐level data presented by the National Academy for State Health Policy (NASHP) on the provision of training and counseling to family caregivers for patients receiving HCBS through Medicaid 1115 and 1915 waivers. ¹⁷ The NASHP report indicates which state waivers provide training and counseling to family caregivers in addition to eligibility requirements and/or exclusions of family caregivers (e.g., legally authorized representative such as a spouse). ¹⁷

Third, we used state‐level data indicating availability of state dependent care tax credits (which includes dependents who are not children and thus may be applicable for family caregivers), whether these credits are refundable, and restrictions on refundability of credits. ¹⁸ Refundable tax credits allow the tax filer to not only reduce the amount of taxes owed but also receive a refund if the amount of the credit is greater than the amount of tax owed. In contrast, a nonrefundable tax credit will allow a filer to reduce the amount of tax owed but will not impact the amount of refund a tax filer may receive. Finally, we used Kaiser Family Foundation estimates of the percentage of Medicare beneficiaries who were dually eligible for Medicaid by the end of the study period (2019) to adjust scores for policies supporting only Medicaid beneficiaries. ¹⁹

Analysis

First, we described state‐level policies, state tax credits, and state training/counseling of existing state‐level supports for family caregivers as aligned with the policy recommendations identified a priori from the National Academy of Medicine. Second, we described state‐level family caregivers’ supporting policies over time and the extent to which these policies have changed over time. Finally, to rank states’ alignment with the policy recommendations, we created a composite score representing the degree of state‐level supports for family caregivers. We augmented the state‐level policy scores from the AARP LTSS State Scorecard 2020 and incorporated ratings for (1) expansiveness of eligibility criteria for caregivers to receive training through Medicaid waivers and (2) existence and refundability of state‐level dependent care tax credits.

We scored states based on training available to caregivers through Medicaid waivers and caregiver eligibility for the trainings (0 if no trainings are available and 1 if any trainings are available). We calculated a weighted score for states with trainings available to family caregivers based on the state‐level percentage of Medicare beneficiaries who were dually eligible for Medicaid by the end of the study period. We normalized the percentage of Medicare beneficiaries who were dually eligible for Medicaid to the maximum percentage of dual‐eligible Medicare beneficiaries. We normalized the score because a relatively small proportion of older adults are also Medicaid beneficiaries, which is not otherwise reflected in the scoring for policies administered through state Medicaid programs and thus fails to take the target population into account.

Similarly, we scored state‐level provision of dependent care tax credits by refundability. As refundable dependent care tax credits are more generous than nonrefundable dependent care tax credits, we scored states higher for refundable tax credits. Thus, we scored states equal to 0 if not offering a dependent care tax credit, 1 if offering a nonrefundable dependent care tax credit, and 1.5 if offering a refundable dependent care tax credit. Scales for training and dependent care tax credits were selected to be aligned with scoring scales used for the AARP scorecard for similar policies with regard to the total possible score per policy, as well as how incremental improvements in scope/expansiveness are scaled.

Finally, we also re‐weighted the AARP LTSS State Scorecard measures specific to Medicaid enrollees, specifically the spousal impoverishment protections, to adjust for the state‐level percentage of Medicare beneficiaries who were dually eligible for Medicaid by the end of the study period (i.e., the target population for the support services).

To create the composite score, we then summed scores from each of the AARP policy scores, the training score, and the generosity of dependent care tax credit score by state for a possible maximum total of 24, indicating strong support for family caregivers as aligned with the recommendations from Caring for an Aging America. We then ranked states by the composite score with random breaks for ties.

Results

Recommendation to Adopt Policies Supporting Family Caregivers

The policy recommendation to adopt policies supporting family caregivers’ health, economic, and social needs comprises seven specific components identified by NASEM. Each component describes a different aspect of a policy, but a single state policy may address multiple components. Table 1 defines each policy component and state policies corresponding to each component.

Table 1.

National Academy of Medicine Policy Recommendations for State Policies and Associated State Policies^a

Recommendation	State Policies
1a. Identify family caregivers and assess/support their needs to deliver care to the patient	● Caregiver assessment
1b. Provider payment reforms to engage family caregivers in delivering care to the patient	● CARE Act legislation
1c. Training and capacity building of health care providers to engage family caregivers and provide evidence‐based supports and referrals to community services	● CARE Act legislation
	● Caregiver training
1d. Increase funding to existing evidence supports for family caregivers and to evidence‐based caregiver intervention programs	n/a
1e. Explore, evaluate, and, as warranted, adopt federal policies that provide economic support for caregivers	● Family responsibility protected classification
	● Exceeds federal FMLA rules
	● Paid family leave
	● Mandatory paid sick days
	● Flexible sick days
	● Unemployment insurance
	● Spousal impoverishment protections
	● Dependent care tax credits
1f. Expand data collection to facilitate capturing experiences of family caregivers	● CARE Act legislation
1g. Evaluate caregiver interventions across communities in real‐world settings	n/a

Abbreviations: FMLA, Family and Medical Leave Act; n/a, not applicable.

^aFull list of recommendations can be found in Schulz and Eden (2016). ¹³

Identification, Assessment, and Training of Caregivers

To address the recommendation of identifying family caregivers and then assessing and supporting their needs to deliver care to the patient, states may provide caregiver assessments conducted through a Medicaid state waiver or demonstration, national or state‐specific family caregiver support program, or state‐funded HCBS to support family caregivers. Approximately 20% of states (n = 10) do not have a policy to identify, train, and/or support caregivers. Identification of caregivers is related to, but not synonymous with, caregiver assessments, which take into account caregiver skills and patient needs. Approximately 14% (n = 7) of states provide a caregiver assessment through one of the programs, and 67% (n = 34) provide an assessment through more than one mechanism. Approximately 47% of states (n = 24) specifically provide training to family caregivers of Medicaid beneficiaries receiving HCBS (Figure 1A). Of those states providing training through Medicaid HCBS waivers, 18 states provide training to any unpaid caregiver or family member/caregiver, 1 state provides training only to co‐residing family caregivers, and 1 state provides training only to family caregivers related to the patient, but excludes legally authorized representatives (e.g., spouses).

Figure 1.

Panel A. State Trainings for Family Caregivers of Home‐ and Community‐Based Services Medicaid Beneficiaries.^a Panel B. Percentage of Medicare Beneficiaries Who Are Dually Eligible for Medicaid, 2019. [Colour figure can be viewed at wileyonlinelibrary.com]

^aIndiana and Georgia provide training for family caregivers, but with restrictions (e.g., only related family caregivers who are not legally responsible adults).

Nearly half of states with waivers providing some training did so using a Section 1115 demonstration waiver, which is required to be budget neutral to the federal government. ¹⁷ , ²⁰ The expected budget neutrality of a waiver is determined through the application and negotiation process with the state. The other primary type of waiver states use is the 1915(c) waiver. However, when considering the percentage of Medicare beneficiaries who are dually eligible for Medicaid (Figure 1B), we observe discordance between states adopting trainings through Medicaid and states with a higher proportion of adults who are eligible for both Medicaid and Medicare and therefore could benefit from the trainings.

Capacity Building of Health Care Workers to Identify and Support Family Caregivers and Provider Payment Reforms to Engage Family Caregivers in Delivering Care to the Patient

To meet recommendations for provider payment reforms, capacity building, referrals to community services, and expanding data collection to facilitate capturing experiences of family caregivers, states may pass legislation related to the CARE Act. CARE Act legislation encourages integration of caregivers with the health care team by providing incentives and/or training to both providers and caregivers, including support for data collection of trainings for caregivers. ²¹ As of November 2020, 80% of states had passed CARE Act legislation. However, the extent to which legislation supports family caregivers of care recipients who are hospitalized can vary by state. For example, an unpublished analysis of 43 states found only 12% of state legislative acts address educating caregivers on medication management, while 51% of states’ legislation included requirements to provide information about community resources to family caregivers. ¹⁴

Explore, Evaluate, and, as Warranted, Adopt Federal Policies That Provide Economic Support for Caregivers

To meet the recommendation to explore, evaluate, and, as warranted, adopt federal policies that provide economic support for caregivers, states have adopted variations of federal policies to provide financial supports for family caregivers, such as the Family and Medical Leave Act (FMLA). Specifically, state policies providing economic support for family caregivers include paid family leave above the federal requirements of FMLA, paid and/or flexible sick days, and laws protecting family caregivers from discrimination in the workplace. We observed approximately 20% of states with some policy exceeding the federal FMLA requirements and 18% offering paid family leave. While only 39% of states have mandatory paid sick leave, 67% of states have some degree of mandatory paid sick leave and/or flexible sick day policies. More broadly, some states adopted laws or regulations pertaining to unemployment insurance for loss of employment due to caregiving needs of immediate family members and/or identifying family caregiving as a protected class from employer discrimination. Forty‐nine percent of states have policies of unemployment insurance supporting family caregivers.

Additionally, as spouses are often caregivers and most LTSS services in the United States are provided through Medicaid, for which eligibility is in part means‐based, some states have enacted legislation or regulations to protect the financial status of spouses of Medicaid beneficiaries beyond the federal minimum maintenance of needs allowance. The minimum maintenance of needs allowance is intended to protect spouses of patients from falling into poverty as they “spend down” resources in order to qualify for Medicaid services. Ninety‐six percent of states have some degree of financial protections for spouses of Medicaid beneficiaries. However, among those states with any degree of spousal financial protections, 57% received the lowest rating (but still greater than 0), and only 14% received the maximum score. See Appendix B for state‐level variation in the degree to which spouses are protected.

To provide economic support for caregivers, some states have adopted variations of federal dependent care tax credits to provide financial supports for family caregivers. Like other policies supporting family caregivers, we observed heterogeneity across states. Forty‐five percent of states (n = 23) offer a dependent care tax credit, with 10 of those states offering a refundable tax credit (Figure 2). Among states offering a dependent care tax credit, eligibility for tax credit amounts varies by state, with some states (e.g., Nebraska) having a tax credit on a sliding scale, while others (e.g., Georgia) have a single income eligibility criterion. For example, Nebraska's dependent care tax credit allows tax filers to receive 100% of the federal child and dependent care tax credit (CDCTC) for incomes at or below $22,000. For tax filers with incomes above $22,000 and up to $29,000, the credit is reduced by 10% for each additional $1,000. Finally, tax filers with incomes greater than $29,000 can claim 25% of the federal CDCTC as a nonrefundable tax credit.

Figure 2.

State‐Level Dependent Care Tax Credits [Colour figure can be viewed at wileyonlinelibrary.com]

Recommendation to Increase Uptake of Policies Supporting Family Caregivers

According to the AARP LTSS State Scorecard 2020, compared to the state scorecards constructed in 2017, all state scores for policies supporting family caregivers (unemployment insurance, family responsibility protected classification, provisions exceeding FMLA, paid family leave, paid sick days, flexible sick days) either stayed the same or improved. In addition to the increasing scores over time, which indicate a greater degree of support for family caregivers, we also observed improvements across policies on the extensive margin, with more states enacting policies that support family caregivers. Fourteen percent of states had no family responsibility protected classifications in 2014 but had enacted policies by 2019. Six percent and 12% of states had no paid family leave and no paid sick days in 2017 but had enacted at least some paid family leave and paid sick days, respectively, by 2019. Finally, 6% of states had no flexible sick day policies in 2016 but adopted at least some flexible sick day policies by 2019. Similarly, we observed an increase in the extensive margin of states passing CARE Act legislation and states having a caregiver assessment: 18% and 16% of states, respectively. However, when considering the domain of spousal impoverishment protections, 24% of states received lower scores, indicating fewer or no protections, in 2020 compared to 2016. Only 6% of states received higher scores, and 71% of states’ scores did not change for the domain of spousal impoverishment protections.

Ranking of State Support for Family Caregivers as Aligned With NASEM Policy Recommendations

Of a total possible score of 24, where a higher score indicates greater support for family caregivers, we observed a mean of 6.54 (standard deviation, 4.23; range, 0.6‐16.7). Figure 3 illustrates the state ranking for alignment with policy recommendations to support family caregivers. The ranking of states based on the composite score is highly correlated with the AARP scorecard state ranking, with a Pearson correlation coefficient of 0.87. Although similar to the AARP scorecard state ranking for supports for family caregivers, the two rankings have notable differences (see Appendix C for direct comparisons between the rankings). We observed the District of Columbia, New Jersey, New York, Oregon, and Washington as ranking the highest for policies aligned with NASEM recommendations to support family caregivers. In contrast, we observed Alabama, Idaho, Indiana, North Carolina, and Virginia with the lowest ranking for family caregiver supports. The differences between the AARP ranking and our ranking are largely driven by the inclusion of additional policies aligned with NASEM recommendations (eligibility for trainings and dependent care tax credits); the exclusion of nurse delegation, scope of practice, and volunteer driver protections; and weighting to adjust for the population potentially eligible for Medicaid policies supporting caregivers. To meet our research objective, our approach is more expansive in capturing policies specifically aligned with NASEM recommendations.

Figure 3.

State Ranking by Alignment With Recommendations to Support Family Caregivers [Colour figure can be viewed at wileyonlinelibrary.com]

Discussion

Based on our description of state and national policies providing support to family caregivers, we largely observed states becoming more supportive of family caregivers over time. Yet, substantial gaps between policies enacted and NASEM recommendations remain, particularly surrounding economic supports for family caregivers. We also observed variation in access to training for caregivers. The use of different types of Medicaid waivers to fund trainings may have additional implications for access. For example, services provided through Section 1115 waivers must be budget neutral to the federal government, which may result in restricted access to services. In contrast, Section 1915(c) waivers do not have to be budget neutral but may use wait lists, which limit the impact of a policy on family caregivers if services are inaccessible in a timely manner. Lack of training access is aligned with findings from Burgdorf and colleagues, who identified that only 7.3% of family caregivers self‐reported receiving caregiver training. ²² States may also restrict access based on eligibility criteria of family caregivers. ²² Although we observed variation across states, variation does not neatly align with state demographics or economic conditions (e.g., aging population or thresholds for Medicaid eligibility), ²³ , ²⁴ and the underlying factors driving variation are ambiguous. The landscape of state supports for family caregivers is improving but falls short of meeting the National Academy of Medicine's policy recommendations.

To be more aligned with recommendations to support family caregivers, state policymakers could focus on four key policy domains. First, states could expand leave policies, including unpaid and paid annual family and medical leave and sick leave. Offering leave exceeding the requirements of FMLA is one step states could adopt to improve protections for caregivers. Yet, evidence exists that the unpaid aspect of FMLA is not feasible for some eligible caregivers. ⁸ Thus, in the absence of a comprehensive and systematic federal policy, state adoption of paid leave and flexible sick leave policies is critical to support family caregivers. Second, improving financial supports for family caregivers through spousal impoverishment protections and refundable dependent care tax credits could further protect the financial well‐being and stability of family caregivers, particularly those exiting the workforce because of caregiving needs. As dependent care tax credits do not benefit non–tax filers, additional supports may be necessary for individuals with an income below the tax‐filing threshold. Third, providing incentives to health care systems to actively include caregivers as part of the health care team is a key opportunity to increase alignment with NASEM recommendations. ³ , ²⁵ Health care systems in the United States implicitly rely on family caregivers to provide home health and personal care services that would otherwise be delivered by an agency. To improve quality of care and ensure optimal patient care, caregivers require more expansive training, such as for proper wound care, not only in inpatient settings before discharge, but also in pre‐inpatient settings such as through primary care services.

In addition to state‐specific policies, state and federal governments could leverage existing programs to improve access to caregiver supports, specifically Medicaid and Medicare. First, eligibility for Medicaid varies by categorical eligibility criteria (e.g., aged, disabled, pregnant women, children), state, and year. Eligibility for Medicaid focused on the elderly and frail is largely based on (1) income and assets and (2) level of care required. ²⁶ Given the eligibility criteria of Medicaid, and since Medicaid is the primary payer for LTSS in the United States, policymakers have an opportunity to leverage existing infrastructure to better support family caregivers. For example, identifying caregivers and implementing caregiver assessments for visits with providers for Medicaid beneficiaries would be aligned with the National Academy of Medicine's recommendations to systematically identify caregivers and integrate them into the health care team. Relatedly, given that most adults in the United States over age 65 have Medicare, Medicare enrollment, “Welcome to Medicare” visits, annual visits, and plan purchasing (e.g., Parts C and D) present other opportunities by which states could systematically screen for and identify family caregivers to connect with supports. ²⁷ Finally, the increased access to telehealth services established during the ongoing COVID‐19 public health emergency, ²⁸ the rise of hospital‐at‐home programs, ²⁹ and the continued development of more advanced assistive devices for care recipients ³⁰ , ³¹ are additional opportunities to increase awareness of and provide support to family caregivers more broadly.

Although no state policies, among the data sources we examined, specifically referenced families’ diversity in assessing caregiver needs and delivering supports, state policies should explicitly address family diversity with regard to family structure as well as sociodemographic factors, including race, ethnicity, sexual orientation, gender identity, and income, as aligned with recommendations to promote equitable access to services and delivery of culturally competent care. In addition to differing experiences of caregivers by race/ethnicity, racial/ethnic disparities exist regarding caregiving intensity (hours per week, level of assistance, duration of care), access to unpaid leave, and access to paid leave. ⁸ , ⁹ , ³² , ³³ , ³⁴ The Diverse Elders Coalition collaborated with researchers to create specific recommendations for researchers and policymakers “to address the needs of multicultural caregivers by informing current and future research, as well as practice and policy.” ³⁵ Recommendations include the provision of financial support, equitable access to technology, and delivering culturally and linguistically appropriate supports (e.g., translators, sensitivity to perceptions of choice about caregiving, cultural history).

Considering the successes and challenges of the federal policy systematically supporting family caregivers of veterans through the VA PCAFC and other VA caregiver supports may provide useful insights for policymakers. For example, the lessons learned from the successes of PCAFC (e.g., systematically identifying and assessing caregivers while increasing access to care for care recipients ³⁶ , ³⁷ ) and the challenges (e.g., unexpectedly high demand for services, heterogeneous implementation nationwide, providers in dual role of provider and gatekeeper to a monthly stipend ³⁷ , ³⁸ , ³⁹ ) may elucidate implementation strategies or areas for improvement when implementing caregiver supports. In addition to PCAFC, the Veterans Health Administration (VHA) also implements multiple evidence‐based caregiver support programs nationally (e.g., Resources for Enhancing All Caregivers Health VA, Caregivers FIRST). Moreover, caregivers of veterans are explicitly recognized in the VHA electronic health record system. Although PCAFC may provide meaningful insights, attention should also be paid to important differences in the scope and heterogeneity of the VA versus the US population when considering extrapolating program components nationwide.

This study is subject to limitations. First, the analysis has limited generalizability, as we do not specifically address policies supporting family caregivers of children with intellectual and/or physical disabilities and do not account for community organizations supporting family caregivers. Second, the analysis is subject to measurement bias, as the data sources may not fully capture within‐state heterogeneity of localities implementing specific policies supporting caregivers. Finally, although we excluded policies enacted in response to the SARS‐CoV‐2 pandemic, if those policies are adopted long term, then the landscape of caregiver supports would potentially be more favorable for caregivers.

Family caregivers play an essential role in the long‐term care system in the United States. Several signs indicate demand for family caregivers is likely to increase: an aging population ⁴⁰ ; growing hesitancy among patients and families to utilize nursing homes, especially during the ongoing COVID‐19 public health emergency ⁴¹ , ⁴² ; and policy initiatives to support home‐ and community‐based care. ⁴³ Thus, implementing policies to support family caregivers will become more critical as the reliance on family caregivers as essential providers of long‐term services and supports increases.

Funding/Support: Drs. Van Houtven and Miller were supported by the Center of Innovation to Accelerate Discovery and Practice Transformation at the Durham VA Health Care System (Grant No. CIN 13–410). Dr. Van Houtven was supported by the US Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, Research Career Scientist Program (RCS‐21‐137). The views expressed here do not reflect the views of the Department of Veterans Affairs, University of North Carolina, or Duke University.

Conflict of Interest Disclosures: All authors completed the ICMJE Disclosure of Potential Conflicts of Interest form. Dr. Miller reports that the VA Caregiver Support Program Partnered Evaluation Center (PEC 14–272) budget includes support for attending meetings and travel to and from meetings, but no travel/meeting funds have been used in relation to this manuscript. No other conflicts were reported.

Supporting information

Appendix A. Policy Recommendations from Caring for an Aging America from the National Academy of Science, Engineering and Mathematics

Appendix B. State Policies Aligned with Recommendation to Support Working Caregivers

Appendix C. State Rankings for Alignment with Recommendation to Support Working Caregivers

Miller Katherine E. M., Stearns Sally C., Van Houtven Courtney H., Gilleskie Donna, Holmes George M., Kent Erin E.. The Landscape of State Policies Supporting Family Caregivers as Aligned With the National Academy of Medicine Recommendations. The Milbank Quarterly. 2022;00:1‐25. 10.1111/1468-0009.12567