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By Greg Link, Director, Office of Supportive and Caregiver
Services, ACL
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.
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