Appendix for Recalibrating for Caregivers
A decade ago, the Rosalynn Carter Institute for Caregiving (RCI) published Averting the Caregiving Crisis: Why We Must Act Now,1 an ambitious position paper that laid out a dozen recommendations to address what it called an “emerging caregiver crisis.” This paper made bold recommendations that called on leaders in all sectors to “address the most pressing needs of family caregivers, including a lack of adequate training, additional respite care, and greater access to support programs.” A decade later, many circumstances are unchanged.
While there have been some promising legislative accomplishments—including passage of the RAISE Family Caregivers Act, VA MISSION Act, and the Caregivers and Veterans Omnibus Health Services Act of 2010, along with widespread adoption of the Caregiver Advise, Record, Enable (CARE) Act, thanks in large part to the dedication of caregiver advocates—the changes largely have been intermittent and fragmented. Ten years since the paper’s publication, progress in addressing caregiver needs has been piecemeal when a systemic change is needed. The time has come to support caregiver health and well-being in the same way we approach any other public health concern. We cannot simply stand by while the problem grows larger; instead, caregiver health and well-being must be addressed as one component of a complex ecosystem that requires rebalancing. The caregiver crisis is no longer looming on the horizon as a prospective threat. Rather, we are today a nation in crisis. Below, we characterize the policy changes that have taken place over the past decade.
The leading call to action in Averting the Caregiving Crisis was to create a National Quality Caregiving Task Force housed within the White House to oversee the National Caregiving Initiative, with shared leadership between the Secretary of Health and Human Services and the Secretary of Veterans Affairs (VA). While such a task force has not been established, President Donald Trump signed the bipartisan RAISE Family Caregivers Act into law on January 22, 2018. This law launched a national Family Caregiver Advisory Council led by the Secretary of Health and Human Services to develop a national family caregiving strategy. The council does not report directly to the White House, nor does it include the Secretary of the VA, but it does have broad interagency participation and representatives from across the caregiver community working together. Separately, the VA created a Veterans’ Family, Caregiver, and Survivor Advisory Committee whose purpose is to advise the VA on how to “assist and represent veterans’ families, caregivers, and survivors…” While the RAISE Family Caregivers Act has received additional funds from private foundations, it needs significant funding and the council’s recommendations will need senior-level support from across the government to be put into effect.
The paper called for state-level systems that would monitor caregiver health by requiring states to adopt the Behavioral Risk Factor Surveillance System’s (BRFSS) Caregiver Module as part of Older Americans Act funding. The Centers for Disease Control and Prevention (CDC) further developed its BRFSS Caregiving module since the paper’s publication. The module has been revised and tested several times, and between 2015 and 2018, 44 states plus the District of Columbia have administered the caregiver module at least once.2 However, states are not required to administer the Caregiver module, and fewer states have administered it each year since 2015. Curiously, there has not been an update on which states have continued to administer the Caregiving module since Spring 2019.
The paper called for a national outreach and public education campaign to be funded by the Department of Health and Human Services (HHS) using resources of the Centers for Medicare and Medicaid Services (CMS), CDC, and Administration on Aging. Over the past decade, there has been minimal federal investment in public education and outreach for caregivers overall. However, a number of federal agencies have invested in condition-specific public education programs. For example, in 2012, HHS unveiled a resource-heavy website and media campaign as part of a National Plan to Address Alzheimer’s Disease.3 Additionally, HHS has held advisory council meetings with public-facing stakeholders to promote best practices for Alzheimer’s caregiving, while the Agency for Healthcare Research and Quality (AHRQ) has published a “Care for the Caregiver” program implementation guide to help organizations develop programs to support caregivers who have been involved in adverse events.4 Just after the paper was released, Congress passed The Caregivers and Veterans Omnibus Health Services Act, which created the Caregiver Support Program that includes education and awareness for family caregivers of eligible veterans.
The paper recommended professional development for those who actively work with family caregivers so they are equipped with the skills necessary to assure an effective and successful working relationship. Outside of the veteran and military family caregiver community, where some progress has been made, there has been little investment or advancement in training professional caregivers — nor the professionals who work within the health system more broadly — to improve the working relationship with family caregivers. In a 2019 survey of family caregivers from the AARP Public Policy Institute,5 many family caregivers indicated they feel alone in learning how to perform complex medical tasks and worried about making mistakes. Continued investment in this area will be needed.
The paper recommended that research and development be accelerated to advance knowledge about the effectiveness of different systems of caregiver support, incorporating information about serving diverse communities, costs, and cost-effectiveness. It advocated for multi-site demonstration projects within the Innovations Center at the Centers for Medicare and Medicaid Services to test the effectiveness of different configurations of evidence-based programs. Although caregiver research has grown marginally, from $74 million in fiscal year 2016 to $151 million in fiscal year 2019 according to the National Institutes of Health (NIH),6 such demonstration projects have not been undertaken, and we need significantly more caregiver research that goes beyond disease-specific caregiving.
A literature review presented in Families Caring for an Aging America, a 2016 report from the National Academies of Sciences, Engineering, and Medicine (NASEM), compares the effectiveness of interventions designed to support family caregivers of older adults.7 It found that effective interventions tend to share multiple characteristics, including assessments of caregiver risks and needs, tailored interventions that address multiple risk areas, and active involvement by caregivers in skills training as opposed to a didactic and prescriptive approach. It also found that some caregiver interventions reduce the resource use of care recipients by delaying nursing home placements and/or reducing re-hospitalizations.
A set of recommendations in the RCI paper call for ensuring access to support programs for caregivers. These include providing opportunity grants, training, and technical assistance to help agencies and organizations provide programs caregivers can easily access during their normal lives; assuring that caregiver services are evidence-based, culturally relevant, and tied to caregiver programs; and establishing a National Resource Center on evidence-based caregiver programs. In all of these, very little progress has been made. It can be difficult to determine overall investments made by private and independent organizations, but the NASEM report notes that promising interventions have not yet been disseminated and adopted in everyday settings.7 However, the National Family Caregiver Support Program, housed within HHS’s Administration for Community Living (ACL), has provided grants to states and territories to fund various supports designed to help family and family caregivers care for older adults.8 In 2018, funding for family caregiver support services totaled more than $180 million.9 That year, Congress passed the sweeping Mission Act to expand VA family caregiving programs to the 5.5 million Americans providing care to a loved one who is wounded, made ill, or injured during their military service. In the two years since passage, administrative challenges, delays in rulemaking, and aging IT infrastructure have delayed expanding the caregiving program, effectively blocking 4.4 million potential applicants from receiving critical support.10
Establishing parameters around the evidence base of programs continues to be desired, but action in this regard has been piecemeal rather than holistic. There is no national clearinghouse for programs, but some advocacy organizations such as the Family Caregiver Alliance offer evidence-based and culturally sensitive resources on their websites. In 2019, the National Academy for State Health Policy launched the RAISE Act Family Caregiver Resource and Dissemination Center to compile resources and expertise for state policymakers and other stakeholders. In early 2020, the Benjamin Rose Institute on Aging, Family Caregiver Alliance, and the Gerontological Society of America launched Best Practice Caregiving, a database for dementia caregiving programs. In addition, the National Alzheimer’s and Dementia Resource Center, part of the ACL, provides technical assistance to grantees at their request.
In the domain of support to health care providers, RCI recommended in 2010 that caregivers be able to access professionals who can routinely perform caregiver risk and needs assessments. This would include incorporating a caregiver component into routine assessments already conducted by providers. An additional recommendation called for the development of university or community-based technical assistance networks for providers to ensure the uptake of evidence-based interventions. Little progress has been made in these areas. Of note, many organizations promote a Caregiver Self Assessment Questionnaire developed by the American Medical Association,11 but there does not appear to be a government entity formally performing routine risk, needs, and/or competency assessments for caregivers. Medicare only covers home care activities that are provided by a Medicare-certified home health agency, and thus, would not reimburse assessments if the caregivers involved were registry nurses, private therapists, or independent/family caregivers who were unaffiliated with any certified home health agency.
Encouragingly, the Caregiver Advise, Record, Enable (CARE) Act became law in 40 states and territories in just four years, and additional states have initiated the legislative process. This law requires hospitals to involve family caregivers in patient care and particularly in the discharge process. The swift uptake indicates policymaker recognition of the support family caregivers need to perform the medical/nursing tasks they face at home after a family member or friend is discharged from the hospital. That said, the legislation focuses entirely on the outcomes for care recipients, not on caregiver health and well-being.
The paper made policy recommendations “to preserve family caregiving as a viable option by protecting families from economic hardship associated with caregiving, and to create incentives for family caregivers to increase their skill level to provide sustained higher-quality care.” It recommended a caregiver tax credit under the Social Security System; a policy mandate for flexible work arrangements for caregivers wherever feasible; and incentives for family caregivers to build their skills and knowledge. In addition, the paper advocated for investment in an essential infrastructure to serve family caregivers and to promote adoption, implementation, and maintenance of the most effective programs.
The federal government does provide some financial support and relief for family caregivers though not at near the level recommended in RCI’s 2010 paper. There is currently a temporary extension of legislation that allows for tax deductions to cover a loved one’s unreimbursed medical costs if the expenses meet certain thresholds.12 Since 2016, Congress has enacted three paid family leave laws, but none fully meet the needs of family caregivers. First, Congress passed a pilot program providing tax credits to employers that offer 12 weeks of paid family leave to low wage workers caring for aging loved ones or adult dependents.13 The pilot will expire in 2020 if it is not extended. Second, Congress passed the Federal Employee Paid Leave Act (FEPLA), which provides 12 weeks of paid parental leave for many federal workers, setting an example for large employers. However, the law only covers new parents and, notably, does not include family caregivers. Finally, in the wake of COVID, Congress passed emergency paid family leave provisions that provide 10 days of paid leave to care for a COVID infected loved one and 10 weeks of paid family caregiving leave to cover time off to care for a child whose care center closed but, importantly, these provisions did nothing to help the tens of millions of working Americans struggling to care for an aging loved one.14 There are also pending legislative proposals, some with bipartisan support in Congress and in state legislatures around the country, that would institute robust and inclusive paid family and medical leave to help working caregivers who need time off work, even intermittently.15
In addition, the most recent appropriations package passed for fiscal year 2020 Labor-HHS-Education funding contained an increase of $3 million for expanding direct services affiliated with the Alzheimer’s Disease Program, including those for paid and unpaid caregivers. The bill also provided resources for the Family Caregiving Advisory Council’s National Family Caregiver Strategy, as well as $196.24 million for family caregiver program funding through the ACL (of this, $10.3 million is exclusively dedicated to Native American caregiver support).16 Many of the funds appropriated by the federal government are distributed to states, which then use their own discretion for the provision of those funds. The variability inherent in this type of discretionary funding cannot, by its very nature, serve as an “essential infrastructure” for family caregivers. The federal government has not provided rigorous standards or incentives for effectiveness research, and while there has been some modest investment, the need today for a strong policy position is even greater.
1. Rosalynn Carter Institute for Caregiving. Averting the caregiving crisis: Why we must act now. Americus, GA: Rosalynn Carter Institute for Caregiving; 2010 Oct.
2. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module [Internet]. 2019 [cited 2020 Aug 15]. Available from: https://www.cdc.gov/aging/healthybrain/brfss-faq-caregiver.htm
3. U.S. Department of Health and Human Services. National plans to address Alzheimer’s disease [Internet]. 2019 [cited 2020 Aug 15]. Available from: https://aspe.hhs.gov/national-plans-address-alzheimers-disease
4. Agency for Healthcare Research and Quality. Care for the Caregiver program implementation guide [Internet]. 2017 [cited 2020 Aug 15]. Available from: http://www.ahrq.gov/patient-safety/capacity/candor/modules/guide6.html
5. Reinhard SC, Young HM, Levine C, Kelly K, Choula RB, Accius J. Home alone revisited: Family caregivers providing complex care [Internet]. Washington, DC: AARP Public Policy Institute; 2019 Nov [cited 2020 Aug 5]. Available from: https://www.aarp.org/content/dam/aarp/ppi/2019/04/home-alone-revisited-family-caregivers-providing-complex-care.pdf
6. National Institutes of Health. Estimates of funding for various research, condition, and disease categories [Internet]. 2020. Available from: https://report.nih.gov/categorical_spending.aspx
7. National Academies of Sciences, Engineering, and Medicine. Families caring for an aging America. Washington, DC: National Academies Press; 2016.
8. Administration for Community Living. National Family Caregiver Support Program [Internet]. 2019 [cited 2020 Aug 15]. Available from: https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
9. Avison C, Brock D, Campione J, Hassell S, Rabinovich B, Ritter R, et al. Outcome evaluation of the National Family Caregiver Support Program. Rockville, MD: Westat; 2018.
10. Schwab S. Challenges remain 2 years after VA’s expansion of caregiver program [Internet]. Military Times. 2020 [cited 2020 Aug 15]. Available from: https://www.militarytimes.com/opinion/commentary/2020/05/07/challenges-remain-2-years-after-vas-expansion-of-caregiver-program/
11. Health in Aging Foundation. Caregiver Self Assessment Questionnaire [Internet]. 2020 [cited 2020 Aug 15]. Available from: https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire
12. AARP. Important IRS tax tips for family caregivers [Internet]. AARP. 2020 [cited 2020 Oct 15]. Available from: http://www.aarp.org/caregiving/financial-legal/info-2017/tax-tips-family-caregivers.html
13. American Enterprise Institute. Extending the tax credit for paid family leave would provide valuable time to assess its success [Internet]. June 19, 2019 [cited 2020 Oct 15] Available from: https://www.aei.org/economics/extending-the-tax-credit-for-paid-family-leave-would-provide-valuable-time-to-assess-its-success/
14. U.S. Department of Labor. Families First Coronavirus Response Act: Employee Paid Leave Rights [Internet]. 2020 [cited 2020 Oct 15] Available from: https://www.dol.gov/agencies/whd/pandemic/ffcra-employee-paid-leave
15. Congressional Research Service. Paid Family and Medical Leave: Current Policy and Legislative Proposals in the 116th Congress [Internet]. June 3, 2020 [cited 2020 Oct 15] Available from: https://crsreports.congress.gov/product/pdf/R/R46390
16. House Committee on Appropriations. Appropriations Committee Releases Fiscal Year 2021 Labor-HHS-Education Funding Bill [Internet]. July 6, 2020 [cited 2020 Oct 26] Available from: https://appropriations.house.gov/news/press-releases/appropriations-committee-releases-fiscal-year-2021-labor-hhs-education-fundin