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.
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.