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By Alison
Barkoff, ACL Principal Deputy Administrator
It’s fitting that National Family Caregivers Month is
celebrated at the same time as Thanksgiving. Last week, we
paused as a nation to gather with our families and to give
thanks for the good things in our lives. What better time
could there be to recognize and honor the 53 million people
who provide the informal and unpaid care and support that
make community living possible for millions of older
adults, people with disabilities, and children whose
parents are unable to care for them? And when better for us
to recognize – and commit to addressing -- the challenges
that family caregivers often face.
Today’s family caregivers are expected to perform highly
complex tasks, including nursing-related activities that
extend well beyond basic day-to-day assistance with things
like housekeeping. The experience can leave them
financially, emotionally, and physically depleted, and
socially isolated.
Recognizing and supporting family caregivers is a public
health issue that we cannot afford to ignore. The nation’s
system of long-term service and supports could not continue
to function without the unpaid contributions of family
caregivers; the value of the care they provide for older
adults alone is estimated to be $470 billion. Without the
support they provide, millions of people would find
themselves with no choice but to move to nursing homes and
other congregate settings, which carries significant costs
to personal finances, public health care resources, and
quality of life. And, as we have seen during the COVID-19 pandemic,
can have disastrous health consequences.
Similarly, the 2.9 million kin and grandparent caregivers
who open their homes—sometimes temporarily, sometimes
forever— play a crucial role in supporting children who
cannot remain with their parents. Almost half of these
caregivers are themselves older adults juggling the changes
that come with aging along with the challenges of raising
one or more children. While kin and grandparent caregivers
represent all demographics, they are more likely than other
families to live in poverty. They have been
disproportionately affected by the pandemic and many have
faced the loss of critical services, such as special
education and respite care while at the same time
experiencing increases in their responsibilities and
expenses.
This year, ACL published two reports to describe the needs
of the nation’s family caregivers and kin and grandparent
caregivers. Together, the reports offer 48 clear
recommendations for reforming the nations systems of
services and supports to caregivers.
In September, the Recognize,
Assist, Include, Support and Engage (RAISE) Family
Caregivers Advisory Council released its initial
report to Congress. This document included a
comprehensive review of the current state of family
caregiving and 26 recommendations for how the federal
government, states, tribes, territories, and communities—in
partnership with the private sector—can better recognize,
assist, include, support, and engage family caregivers.
On November 16, to highlight the specific needs of kin and
grandparent caregivers, the Advisory
Council to Support Grandparents Raising Grandchildren
released its own report
to Congress. That report, which included 22 key
recommendations, is a powerful and moving testimony to the
resilience and grit of a generation of kin and grandparent
caregivers who have put their own physical, emotional, and
financial well-being on hold to raise children within the
embrace of loving families.
Together, the recommendations in these reports have laid
the groundwork for the development of a cohesive National
Family Caregiving Strategy to address the multi-faceted and
complex needs family caregivers face each and every day.
From changes to ensure that family caregivers are
recognized and included in discussions about the needs of a
loved one to ensuring that caregivers have the knowledge,
skills, and supports necessary to be in that role, a
national strategy for supporting family caregivers will go
a long way toward advancing improvements in in the health
and social service systems that support family caregivers.
Caregiving
Affects Everyone
There’s a well-known saying by former First Lady Rosalynn
Carter that very neatly encapsulates the reach and impact
of family caregiving, “There are only four kinds of people
in the world: those who have been caregivers, those who are
currently caregivers, those who will be caregivers, and
those who will need caregivers." Whether we’re on the
giving end or the receiving end, family caregiving will
touch most of us in some way, at some time.
As National Family Caregivers Month comes to a close, we
encourage everyone to read the two reports and join all us
in considering how we can use the recommendations, even
before the Strategy is released, to begin to better meet
the needs of family caregivers.
I also challenge each of us to consider what we could do
now, to improve the life of the caregivers we know. Could
you offer to pick up groceries or stop by with a cup of
coffee for a brief visit? For those of us in the aging and
disability networks, could you revamp your local program to
be more holistic, taking into account the needs of both the
caregiver and care recipient?
Most important, if you are a caregiver yourself, don’t try
to go it alone. Reach out, ask for help, and remember to
take time for you, wherever and whenever you can. Our
National Family Caregiver Month page can help you find
the resources that are available to help.
Together, we can make a difference to our nation’s family
caregivers, including kin and grandparent caregivers.
Please join us!
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