Advisory Councils Are Developing the National Family Caregiving Strategy
On Tuesday, January 25, 2022, the RAISE Family Caregiving Advisory Council and the Advisory Council to Support Grandparents Raising Grandchildren (SGRG) convened to discuss the development and completion of a national family caregiver strategy.
Allison Barkoff, Principal Deputy Administrator of the U.S. Administration for Community Living (ACL), gave the opening address of the council meeting and discussed the effect of the COVID-19 pandemic on family caregivers. Xavier Becerra, Secretary of Health and Human Services, discussed his own personal experiences with family caregiving and underscored the importance that family caregivers provide to the community. He reiterated the current administration’s commitment to recognize and support family caregivers.
Greg Link, Director of ACL’s Office of Supportive and Caregiver Services, presented a work plan that outlined the remaining steps for the completion of the national family caregiver strategy. The steps will include monthly subcommittee meetings, federal partner convenings, and joint full council meetings between the RAISE and SGRG Councils. The tentative goal is to have the national family caregiver strategy completed by August 2022. The current non-federal members of the RAISE and SGRG Councils terms will conclude at the end of August 2022. In February 2022, ACL will publish through the Federal Register a call for nominations for new RAISE and SGRG council members. The new members’ terms will begin in September 2022.
Findings from Stakeholder Listening Sessions: Community Catalyst & UMass Boston
The team—Pamela Nadash, PhD, associate professor of gerontology at the University of Massachusetts Boston, Eileen Tell, fellow of the Gerontology Institute of the University of Massachusetts Boston, and Siena Ruggeri, program and policy coordinator at Community Catalyst—presented an analysis that included information from 1600 respondents to the ACL Request for Information (RFI) and a series of stakeholder listening sessions. This analysis will help to inform the councils’ work on developing a national family caregiver strategy.
For the stakeholder listening sessions, the researchers reached out to over 150 private and public organizations, including organizations that were not previously familiar with the RAISE Council. These organizations included but were not limited to lifespan, respite, kinship and other caregiver-related organizations; indigenous, rural, and faith-based caregiver supports; employers; providers; and government administrators. The researchers highlighted feedback and actions from listening sessions and the RFI that could be carried out at federal, state, local, and private levels to support caregivers. Recommendations included but were not limited to:
- Developing community ambassador programs for caregivers
- Training health systems and providers to better understand family caregivers’ roles in providing care
- Improving home- and community-based systems and expanding access to caregiving supports for a range of populations
- Expanding broadband access for rural caregivers
- Supporting direct care workforce development
- Expanding paid leave options and opportunities for family caregivers to receive compensation
- Providing assistance to employers to support working family caregivers, and
- Standardizing data collection on family caregiving
Family Caregiver Employment and Financial Preparedness: Considerations for the National Strategy
The next portion of the meeting was devoted to panel presentations outlining family caregiver employment and financial preparedness, for consideration in the national family caregiver strategy.
Jennifer Olsen, CEO of the Rosalynn Carter Institute (RCI) for Caregiving, presented on working caregivers. Her presentation included data on the financial strains that caregiving places on working caregivers and the workplace. RCI is conducting pilot programs with employers that evaluate a range of work-related benefits that reflect the needs of caregivers.
Greg Olsen, Acting Director of the New York State Office for the Aging, presented on New York State’s Caregiving Initiative for working caregivers. The state campaign includes creating a business guide to inform employers on the impact of caregiving on employees, a working caregiver survey assessing the effects of caregiving, greater access to family caregiver resources, and a commitment to make caregiving a statewide, cross-sector issue through a multi-agency effort.
Monica Moreno, Senior Director of Care and Support from the Alzheimer’s Association, and Dr. Katherine S. Judge, Professor of Psychology at Cleveland State University, presented on financial literacy and preparedness among dementia caregivers. Their research has shown the dramatic financial impact of caregiving that includes significant out-of-pocket expenses that negatively impact income and savings. This finding led to an effort to better understand the financial needs of caregivers, which resulted in the Alzheimer’s Association receiving a three-year grant from ACL to strengthen financial literacy and preparedness of family caregivers. Through this endeavor, the Alzheimer’s Association released a caregiver-targeted online training program entitled “Managing Money: A Caregiver’s Guide to Finances.”
The National Family Caregiving Strategy: Status Update and Next Steps
Sarah Markel, an aging services program specialist at ACL, reviewed the RAISE and SGRG Councils’ work to date on developing the national strategy. ACL asked federal agencies to report on concrete actions that will support the national strategy. ACL received information from multiple agencies and plans to review and analyze the information for inclusion in the national strategy. The national strategy will also incorporate themes from the current administration’s focus on person-centered care; the impact of trauma; diversity, equity and inclusion; and workforce considerations.
Next Steps
New subcommittees, which will convene in early and mid-2022, will comprise of the federal and non-federal members of the RAISE and SGRG Councils. The subcommittees will focus on the non-federal actions for the national strategy. There will be one subcommittee for each of the five goals in the initial reports to Congress: awareness and outreach; engagement and partnership; strengthening services and supports; financial and workplace security; and data, research, and evidence-based practice.
Washington Demonstrates Cost Savings and Improved Outcomes from Supporting Family Caregivers
Washington has been at the forefront of providing supports to family caregivers, in large part, because state policymakers have been able to demonstrate cost savings and improved quality of life. Washington’s Medicaid Transformation Project proactively supports caregivers of individuals likely to spend down to Medicaid long term services and supports (LTSS). It was designed after Washington’s Family Caregiver Support Program, (FCSP) which assesses caregivers and provides training, respite, and other resources. Robust data collected from these programs demonstrate that Washington’s investments in family caregivers have ultimately contained costs while improving the wellbeing of caregivers and individuals receiving care.
Proven Return on Investment
Washington’s comprehensive Medicaid 1115 waiver program, the Medicaid Transformation Project, has shown a return on investment since its inception in 2017. This waiver has two caregiver support programs: Medicaid Alternative Care (MAC), which serves caregivers of Medicaid-eligible individuals not using Medicaid LTSS, and Tailored Services for Older Adults (TSOA), which supports individuals and caregivers of individuals who are not yet eligible for Medicaid or are choosing to not participate in Medicaid, but likely to eventually need Medicaid LTSS. TSOA and MAC both offer similar benefits for caregivers, including:
- Caregiver assistance with household tasks, respite, home-delivered meals, and minor home repairs
- Training and education
- Specialized medical equipment and supplies
- Health maintenance and therapy supports, such as adult day centers and counseling
The dollar value of the benefits depends on the caregiver’s assessment. Caregivers are eligible for benefits if they receive a screening with TCARE, an evidence-based tool for assessing a caregiver’s own needs. Caregivers can receive up to $4,362 over a six-month period depending on their assessed level of need and care plan. Eligibility is determined primarily by age, income, and assessment, with more flexibility with income and asset limits than traditional Medicaid. Perhaps due to these flexibilities, more individuals and caregiver/recipient pairs have enrolled in TSOA than MAC. Enrollment in the program has been lower than anticipated, in part due to challenges reaching people who do not self-identify as caregivers.
| Eligibility for Medicaid Transformation Project LTSS Initiatives | |
| Medicaid Alternative Care (MAC) | Tailored Supports for Older Adults (TSOA) |
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Washington analysts determine cost effectiveness with a synthetic estimate projection, a method of statistical analysis that compares actual expenditures with projected expenditures if no program had been implemented. Though the waiver is still in progress, data from the first few years show that the program is succeeding in delaying Medicaid LTSS and preventing hospitalizations. Furthermore, survey results find high levels of satisfaction among caregivers and recipients. Washington’s evaluation is largely based on data from TCARE family caregiver assessments combined with data on emergency department visits, inpatient admissions, 30-day readmission rate, nursing home admission rate, and mortality rate.
Prior to the initiation of the Medicaid Transformation Project, Washington used data to demonstrate the cost-effectiveness of expanding its Family Caregiver Support Program (FCSP) in 2012. Under Washington’s FCSP, interested caregivers receive a TCARE screening. Subsequently, eligible caregivers receive support in finding local resources, training on caregiving topics, help with securing respite, and advice and support on specific challenges. This assessment strategy produces a range of data on caregivers and recipients of care and allows the state to establish a baseline from which to study the impact of the program. In an analysis of the FCSP expansion, Washington found that care recipients whose caregivers were screened following FCSP expansion were 20 percent less likely to enroll in Medicaid LTSS in the year post-screening, controlling for other factors. These results identified a return on investment using baseline and implementation data, demonstrating the value of the state’s investment in caregivers and serving as a precursor to the Medicaid Transformation Project waiver.
Multi-Faceted Approach to Support Caregivers and Reduce Medicaid Costs
Washington’s efforts on caregiver supports are multi-faceted to delay the need for Medicaid services. Both Washington’s FCSP expansion and its Medicaid waiver place an emphasis on identifying caregivers in need of support before more formal LTSS are needed and connecting them with resources. These initiatives align with other efforts Washington has taken to support caregivers and older residents, including the state’s Paid Family Leave program and its first-in-the-nation public long-term care insurance program. The combination of these supports, emboldened by robust data demonstrating their effectiveness, forms a cohesive caregiver support strategy that allows Washington to provide LTSS care while spending less per resident on Medicaid LTSS than the national average.
Acknowledgement: Thank you to Susan Engels, Office Chief, Home and Community Services, Washington State Department of Social and Health Services, for presenting much of this information to NASHP’s State Medicaid Policy Institute on Family Caregiving on June 16, 2021. This blog is part of NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center and is supported by The John A. Hartford Foundation.
RAISE Family Caregiving Advisory Council Releases Report to Congress: September 2021 Meeting Summary
On Tuesday, September 21, the RAISE Family Caregiving Advisory Council met to discuss the release of the RAISE Initial Report to Congress and recognize the outstanding work of all those who helped make the report a reality.
Call to Order
Acting Administrator and Assistant Secretary for Aging of the Administration for Community Living (ACL) Alison Barkoff began the meeting by commending the council for their work in completing the report to Congress, especially under the challenging circumstances of the COVID-19 pandemic. This report is the first major step of the RAISE Act, and the recommendations serve as the foundation for the next step, the National Caregiver Strategy. Barkoff expressed her eagerness to move expeditiously on the National Caregiver Strategy and seize this opportunity to support America’s 53 million caregivers.
Overview of Report
Council co-chairs Nancy Murray, MS, Casey Shillam, Ph.D., and Alan Stevens, Ph.D. shared their appreciation for the report as the culmination of years of advocacy and two years of intense work with a wide range of stakeholders. While caregiver stories are intensely personal and unique, the report captures common themes across all caregivers. They also expressed their gratitude for the help that NASHP, ACL, and The John A. Hartford Foundation provided.
Following the co-chairs’ presentations, Barkoff shared a video featuring numerous caregivers speaking about their experiences with caregiving. Following the video, Barkoff spoke with two family caregivers featured in the video, Sarah and Debbi. Sarah discussed how important it is for caregivers to be engaged as partners in an individual’s care. Debbi shared the challenges and sacrifices she has made to serve as a caregiver to her son, but also the powerful bonds for her entire family that have formed through caregiving. She described caregiving as giving quality of life to others and said that it has enhanced her life in ways she could not have imagined.
Looking Ahead to the National Strategy Development
Jessica Schubel, Director of Affordable Care Act and Health Care for the Domestic Policy Council at the Executive Office of the President, shared the Biden administration’s priorities on family caregiving. She described how states can use the American Rescue Plan to expand home and community-based services (HCBS) by using funding to support telehealth, reduce waitlists, and pay for transition costs. Other possibilities to support family caregivers include paying for supplies and equipment, PPE, and in-home vaccination.
Two speakers from the National Alliance for Caregiving (NAC) followed Schubel. First, Mike Wittke shared how caregiving is a dynamic experience. As a result, it is important that the strategy receives ongoing attention to ensure it remains effective. Then, C. Grace Whiting of NAC shared the five pillars of the national effort to implement the RAISE Act:
- Awareness and outreach- not all caregivers identify as such and some resist the label. It is the responsibility of systems to reach out to individuals, not vice versa.
- Recognizing caregivers as partners- the CARE Act is a good start, but there are other opportunities to engage caregivers, such as those in the 21st Century Cures Act 2.0.
- Income security- caregivers would benefit from paid family and medical leave and wage replacement programs. Additionally, the Credit for Caring Act and universal family care would assist caregivers and recognize the value of their work.
- Family centered support- Important work is being conducted to engage the caregivers who are often forgotten, especially young caregivers. State actions like Maryland’s Caregiver Services Corps have helped during COVID.
- Research and data gathering- Actions like expanding the caregiver module of the Behavioral Risk Factor Surveillance System (BRFSS) and implementing the strategic plan created by the National Institute of Nursing Research would help with gathering robust, consistent data.
Closing Remarks
Alison Barkoff concluded the meeting by once again expressing her excitement for the release of the report and for this opportunity to change the landscape for caregivers. She ended the meeting by expressing that the strategy will recognize the hard work of caregivers to let others live with dignity and independence, with the hope that the report will make caregiving sustainable.
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