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.
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.
RAISE Family Caregiving Advisory Council: January 2021 Meeting Summary
On Jan. 19, 2021, the RAISE Family Caregiving Advisory Council convened to hear presentations on Medicaid supports for family caregivers, listening sessions with caregivers, and the compiling of a federal inventory of family caregiver resources and programs. The council also discussed the process for reviewing its initial report to Congress.
The meeting began with a recorded video message from the council chair, Administrator and Assistant Secretary for Aging at the Administration for Community Living (ACL) Lance Robertson. He reflected on the council’s progress and accomplishments in 2020 and shared parting words and well wishes, thanking the council for its commitment, along with that of the US Department of Health and Human Services (HHS), the ACL, and other partners that have supported the council’s work. The council also took a moment to share its gratitude for Robertson’s support and leadership.
Medicaid Supports for Family Caregivers Presentation
National Academy for State Health Policy (NASHP) Senior Program Director Kitty Purington delivered an informative presentation on ways state Medicaid programs could support family caregivers (read the full report). Purington noted family caregivers’ role in states that are conducting rebalancing efforts toward home- and community-based services (HCBS). Examples of HCBS that could support family caregivers include counseling and respite, education and training, care coordination, and state reimbursement options that could include family caregivers. Purington noted that policy levers, such as state plan options, 1915(c) waivers, 1115 waivers, and Medicaid managed care present opportunities to incorporate benefits for enrollees that support family caregivers.
Purington highlighted examples of states that have incorporated innovative supports for family caregivers and noted opportunities at the federal level to support states in implementing effective family caregiver strategies. Purington concluded by noting potential options to support family caregivers of Medicaid enrollees, such as:
- Partnerships with area agencies on aging (AAA), and similar organizations that offer training and counseling supports through waivers or managed care organizations; and
- Support infrastructure for caregiver assessment.
Purington also explained the importance of developing evidence-based practices to support programs and services, particularly in underserved communities.
Family Caregiver Listening Sessions Presentation
Eileen Tell, chief executive officer of ET Consulting and Fellow at LTSS LeadingAge Center at UMass Boston, presented an overview of the caregiver listening sessions. After receiving caregiver input from ACL’s Request for Information on behalf of the council, a series of virtual listening sessions were held that gathered detailed perspectives from caregivers. Listening sessions attendees included family caregivers of diverse age, race, ethnicity, employment status, and family structure, along with additional groups, such as Latinx, teen, and grandparent caregivers.
The presentation covered the major areas of inquiry from the listening sessions including:
- Respite
- Adult day care
- Information and referral
- Caregiver training and education
- Care transitions, and
- Financial well-being.
The presentation examined how caregivers expressed a strong desire for respite services but expressed concern about finding quality respite caregivers. Council members also discussed caregiver concerns with referral systems and how they can be changed to earn caregiver trust. The presentation also addressed different preferences for training and education of caregivers, including behavioral and medical training in a hands-on or online setting.
Another area of concern covered in the presentation was caregiver perspectives on different financial supports including:
- Workplace accommodations
- Direct pay, and
- Tax incentives.
Tell also addressed how the COVID-19 pandemic is impacting caregivers, describing both positives and negatives. While many caregivers appreciate additional workplace flexibility and the greater availability of family to assist with care, they cited isolation, stress, difficulty adapting some therapies to a virtual setting, and other new responsibilities as challenges.
Inventory of Federal Programs and Initiatives to Support Family Caregivers
Greg Link from ACL shared updates on the compilation of an inventory of federal programs and initiatives that could support family caregivers. Information within the inventory is intended to address family caregivers, kinship/grandparent caregivers, and other stakeholders. The inventory is currently planned to be made available to the public via a webpage in the future, with a high-level overview in the report to Congress.
Initial Report to Congress: Overview of Council Review Process
Sarah Markel of ACL explained the process for publishing the finalized first draft of the report to Congress. Council members will soon have the opportunity to review and provide edits to the first draft and collaboratively discuss changes. Once the report is finalized and passes clearance, the council will vote on final approval.
Closing Remarks
The meeting concluded with a discussion of the review process for the council’s initial report to Congress, and next steps involving development of the Family Caregiving National Strategy. The council subcommittees will meet in February 2021.
In Their Own Words: Family Caregivers from Across the Country Share their Priorities and Recommendations
A new report published by NASHP’s RAISE Family Caregiver Resource and Dissemination Center documents the concerns and recommendations for change shared by 1,613 family caregivers and organizations that work with them. The US Administration for Community Living (ACL) requested input for its report, In Their Own Words: Caregiver Priorities and Recommendations: Results from a Requests for Information, as it works to implement the requirements of the Recognize, Assist, Inform, Support and Engage (RAISE) Family Caregivers Act of 2017.
Three-fourths of the responses came from family caregivers across the age spectrum and of varying racial and ethnic backgrounds, with the remaining from organizations. The responses convey the financial, physical, and emotional stresses that caregiving creates and capture the intense need that caregivers have for appropriate financial supports, the ability to have some time off, and help with everyday tasks.
The RAISE Council will incorporate this input in its report to Congress. This report was made possible by funding from The John A. Hartford Foundation to NASHP’s RAISE Family Caregiver Resource and Dissemination Center in collaboration with the ACL.
Report
Report: In Their Own Words: Caregiver Priorities and Recommendations: Results from a Request for Information, by LeadingAge LTSS Center at UMass Boston and Community Catalyst, February 2021.
Infographic
NASHP State Medicaid Policy Institute on Family Caregiving: Request for Applications
The National Academy for State Health Policy (NASHP), with generous support from The John A. Hartford Foundation, is seeking state applications to participate in its State Medicaid Policy Institute on Family Caregiving. The institute will engage up to five teams of state leaders for one year to develop and/or strengthen health policies and strategies that support family caregivers, with a particular focus on home- and community-based approaches for older adults.
Best practices and lessons learned from the policy institute’s work will be shared with other states and contribute to the national discussion on family caregiving fostered by the RAISE Act, a federal initiative led by the Administration on Community Living to develop the first national strategy on family caregiving.
- What’s in it for states? Each state team will receive $40,000 plus technical support during a 12-month period starting in mid-March 2021. The State Medicaid Policy Institute on Family Caregiving will provide state leaders with opportunities for peer-to-peer discussion, targeted support on their state policy goals, and access to national expertise.
- Team composition: State applications may include a team of up to four members, comprised of at least two senior state officials or administrators (such as state aging and disability administrators, Medicaid officials, governor’s health policy leaders, legislators, etc.). The team may include additional state staff and others who can directly support team goals (e.g., family caregiver organizations, long-term services and supports providers, etc.).
- To apply: Applications should be emailed to Luke Pluta-Ehlers at lpehlers@oldsite.nashp.org by 5 p.m. (ET) on Jan. 29, 2021.
- Informational webinar: Interested state officials are encouraged to participate in an Informational Webinar on the NASHP State Medicaid Policy Institute on Family Caregiving from 3-4 p.m. (ET) Wednesday, Jan. 13, 2021. Register here.
State Long-Term Care Systems and the Importance of Family Caregivers
Across the nation, state health care systems depend on family caregivers, who provide an estimated $470 billion in critical support to help relatives, friends, and neighbors remain at home and in community settings. With the onset of the COVID-19 pandemic, the value of family caregivers is now greater than ever. As states rethink the role of long-term care settings, struggle to support access to care while maintaining social distancing, work to promote health equity, and face unprecedented cuts to state budgets, state health officials are increasingly looking to family caregivers as a critical part of the care continuum for older adults and people with serious health care needs.
NASHP is launching this State Medicaid Policy Institute on Family Caregiving to assist states in their work to implement and/or improve systemic approaches that support family caregivers at this pivotal time. NASHP will serve as a resource and convener to help policymakers connect with peers and experts, identify and share strategies and solutions, and provide insights for other state leaders who seek to support family caregivers through policy change or program development.
States will benefit from individualized and peer learning opportunities about effective and value-based policies and programs that support family caregivers and promote home- and community- based long-term care. Participating states will achieve the following during the course of this 12-month institute:
- Gain practical information and insights into policy strategies to support family caregivers;
- Develop a workplan for implementing key policy or programmatic priorities in their state; and
- Achieve key milestones that will enhance their ability to improve care and/or reduce cost by improving systems of care for family caregivers.
Application Requirements
Team composition: State applicants may identify a core team of up to four members to participate in the institute, including at least two state officials or administrators (at least one of whom should be from the state Medicaid agency) who can implement the state’s specific goals and project activities. Additional members may include other state staff, or representatives from family caregiver organizations, community-based organizations, providers, or other key stakeholder groups that can support the state’s goals. Applicants should also identify a team lead who can provide overall leadership and serve as the primary point of contact. The team lead must be a state official.
State goals: Applicants should describe specific and measurable policy goals and a realistic timeline and activities to achieve these goals. Strong candidates will demonstrate foundational planning for aging and disability policy changes to address family caregivers (e.g., a taskforce or commission, planning meetings, legislation, concept paper, initial policy planning, etc.).
Use of resources: Applicants should describe how they will use the resources provided by the institute to make progress on their goals. Successful applicants will submit a budget that details use of resources.
Technical assistance needs: Applicants should describe what specific expertise, technical support, and other resources would be helpful in making progress.
Letters of Support: It may not always be feasible for the Medicaid and/or aging and disability division or agency directors to be directly involved in the institute. In these cases, a letter of support from these officials is encouraged.
Submission: To apply to NASHP’s State Medicaid Policy Institute on Family Caregiving, please download and complete this brief application.
The application and any letters of support must be submitted electronically to Luke Pluta-Ehlers at lpehlers@oldsite.nashp.org by 5 p.m. (ET) Jan. 29, 2021. NASHP will notify each state of its application status no later than Feb. 15, 2021.
About NASHP
NASHP is a nonpartisan, nonprofit organization with over three decades of experience in helping state policy makers lead. NASHP provides expertise, convenes states, shares innovations and best practices, and supports state policymakers in making concrete and sustainable health system reform. For more information, visit NASHP’s website at www.oldsite.nashp.org
Webinar: RAISE Act, State Policies, and NASHP’s State Medicaid Policy Institute on Family Caregiving
Family caregiver contributions offset the cost of personal care services and can delay the need for more costly care. Hear about ways states can improve their family caregiving supports, including:
- The RAISE Family Caregiving Advisory Council’s newly adopted recommendations to better support family caregivers;
- Information from a Wisconsin state leader who will describe state innovations to support family caregivers; and
- A new opportunity for states to participate in a state Medicaid policy institute for family caregiving.
This webinar is hosted by the National Academy for State Health Policy’s (NASHP) RAISE Family Caregiver Resource and Dissemination Center and funded by The John A. Hartford Foundation, in collaboration with the US Administration for Community Living.
Moderator:
Wendy Fox-Grage, NASHP Project Director, RAISE Family Caregiver Resource and Dissemination Center
Speakers:
- Rani Snyder, Program Vice President, The John A. Hartford Foundation
- Greg Link, Director, Office of Supportive and Caregiver Services, ACL
- Kitty Purington, NASHP Senior Program Director, NASHP
- Carrie Molke, Director, Wisconsin Bureau of Aging and Disability Resources
RAISE Family Caregiving Advisory Council Votes to Approve Council Recommendations for Inclusion in Initial Report to Congress
On Nov. 18, 2020, the RAISE Family Caregiving Advisory Council convened to review and vote on a set of recommendations to support family caregivers, across the lifespan, for inclusion in its initial report to Congress. The council is tasked with creating a National Family Caregiving Strategy, as required by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 (the RAISE Act).
Call to Order
The meeting began with a call to order and opening remarks by Lance Robertson, Administrator and Assistant Secretary for Aging. He acknowledged the celebration of National Family Caregiver Month in November of every year.
Administrator Robertson thanked his fellow council members for what the council has accomplished since its inauguration a little over a year ago and especially, the recommendations that were the focus of this meeting in support of the 50 million family caregivers in our country who he described as “the cornerstone of our long-term systems and a true representation of the very best in all of us.”
He acknowledged members of the public who tuned in to participate in the meeting and expressed gratitude to ACL’s partners such as the National Academy for State Health Policy (NASHP), the John A. Hartford Foundation, Community Catalyst, University of Massachusetts at Boston and Advancing States whose collaborative efforts have brought understanding and meaning to important areas of the council’s work.
Caregiver Voices: Overview of the “Caregiver Stories Project”
Michael Wittke from the National Alliance for Caregiving (NAC) presented a series of caregiver stories and vignettes compiled via interviews by NAC in 2020, with support from The John A. Hartford Foundation. These stories feature a wide range of diverse caregiver experiences from across the United States; caregivers were interviewed about their lived experiences, caregiving challenges and experiences, and what they believed policymakers and society should know about the caregiver experience. Caregiver stories will be included as part of the council’s report to Congress and published on NAC and NASHP’s webpages. In 2021, some stories will be released as video clips to promote and disseminate caregiver voices.
Presentation of Recommendations
The council voted on, and unanimously approved, 26 recommendations to support family caregivers, across the lifespan, structured around the council’s goals for the national strategy. These recommendations will also be part of the council’s initial report to Congress.
Next Steps
No formal council activities are scheduled for December 2020. The next council meeting is scheduled to take place in January 2021. The council will be discussing its draft report to Congress in the winter and spring of 2021.
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