In the U.S., nearly 55 million caregivers, most of whom are family members, face new situations and challenges on a daily basis. A typical day often includes a bit of uncertainty topped with moments of elation and gratitude. Whether assisting with navigating the intricacies of the health care system or providing complex medical care themselves, family caregivers often need information, training, and other services and supports to help them manage their roles.
Regardless of the unique circumstances and challenges each caregiver faces, those of us who provide care and support to others share many similarities. When we need information about our caregiving situation, it must be reliable, current and from trusted sources. Because it can be confusing to understand the array of supports that are available, we might need someone we can turn to for assistance navigating the system. Sometimes, however, we just need a break. Having access to affordable, quality and flexible respite options can give us the respite we need to look after our own emotional, physical and spiritual wellbeing.
Too often, family caregivers don’t know where to turn for help and do not feel their voices are heard, much less understood. Because caregiving is the foundation of our nation’s system of long-term supports and services, families facing these challenges must be supported, empowered and heard.
One year ago, The Administration for Community Living first convened the Family Caregiving Advisory Council as part of its responsibility for implementing the requirements of the Recognize, Assist, Include, Support and Engage Family Caregivers Act, commonly known by its acronym, RAISE. Guided by the principles of respect for diversity and inclusion, person- and family-centered philosophies, and ensuring the autonomy, choice and empowerment of caregivers, the Council’s efforts have included:
- Proactively seeking the input of caregivers, key stakeholders and others in advance of preparing a report and National Caregiving Strategy that reflects the voices and preferences of the families we are seeking to recognize and support;
- Conducting substantive deliberations and work in five open meetings and public forums; and
- Surveying the federal landscape to identify programs and initiatives already in place that can support caregivers and identify opportunities to strengthen collaboration and reduce duplication of such efforts.
Throughout this journey, both the Family Caregiving Advisory Council and ACL have been fortunate to collaborate with the National Academy for State Health Policy’s RAISE Family Caregiver Resource and Dissemination Center. Funded by The John A. Hartford Foundation, the Center is developing family caregiving resources for state and federal policymakers and other stakeholders; providing support to the council and its subcommittee member as they develop policy recommendations; convening experts and thought leaders to provide perspectives and expertise to the council; and supporting states as they develop policies to address family caregiver issues.
In the coming months, the Family Caregiving Advisory Council will deliver its initial Report to HHS Secretary Azar, who will review the findings and submit it to Congress. Through this process, a spotlight will be focused on the specific needs and concerns of caregivers and the recommendations of the Council will form the basis of America’s National Caregiving Strategy, to address the complex needs of caregivers.