Caregiving Is a Sacred Bond — Our Policies Are Starting to Reflect It
Recognition of caregiving and family caregivers has never been higher at the national and state levels; this expert in family care reflects on our nation's progress
I grew up in South Texas watching my mom balance a full-time job while raising three kids and taking care of my grandmother who battled multiple chronic conditions. It was tough work that she did out of a deep sense of love for her family.
She also did it out of necessity, as there were no alternatives — and she had little support to make it easier. It was my mom's story, and her sacrifices, that made my story possible. She set me on a path to become the first person in my family to graduate from college and the first Latino President and CEO of a national caregiving organization.
It was my mom's story, and her sacrifices, that made my story possible.
As I reach my first year at the helm of the National Alliance for Caregiving (NAC), the nation's largest membership-based caregiving organization, I've found myself reflecting on the progress made in support of family caregivers over the last year and since my mom first took on the role.
My family's story is not unique, especially among Latino Americans, among whom more than one-third of families live in multigenerational households. In the U.S., nine million Latinos, mostly women, provide unpaid care for a loved one.
But things are changing.
First, recognition of caregiving — and America's 53 million unpaid family caregivers — has never been higher at the national and state levels.
The past year saw the release of the National Strategy to Support Family Caregivers, the nation's first whole-of-society blueprint to address the needs of family caregivers. NAC, along with other advocates, had long championed the development of a national framework to drive federal, state, and private-sector action in support of unpaid caregivers.
The National Strategy outlines 350 federal actions and 150 community, state-based, and private-sector actions to address the diverse challenges faced by caregivers, from boosting health outcomes to enhancing economic security.
This new national caregiver playbook — and the $20 million invested by the Biden Administration to implement the strategy — is a foundation to build from as we advocate for bigger and bolder action on behalf of unpaid family caregivers.
That advocacy is working. Following the release of the National Strategy, President Biden issued a historic executive order detailing over 50 actions the administration will take to bolster support for the millions of Americans providing both unpaid and paid care, including improving access to respite services. This represented the most sweeping set of executive actions to improve care ever taken by an American president.
Just recently, the Centers for Medicare and Medicaid Services proposed a new rule to pay health care providers to train family caregivers assisting with activities of daily living and providing complex medical assistance to their loved ones.
As I think about my mom's experience, training would have been instrumental in helping her manage complications from my grandmother's diabetes that eventually lead to an amputation. This new proposal is one step toward better integrating family caregivers into health care teams, which is among the National Strategy's goals. It will also lead to better health outcomes for care recipients and lower emotional distress for family caregivers.
Beyond federal action, states across the nation are passing policies to help caregivers thrive at home and at work.
Beyond federal action, states across the nation are passing policies to help caregivers thrive at home and at work.
In the past year or so, four states — Minnesota, Maine, Maryland, and Delaware — have passed paid family and medical leave laws. As one of the only industrialized nations without a national paid leave policy, these states are helping to fill a critical gap in our nation's care infrastructure. Paid leave policies are critical to helping the 61 percent of family caregivers who navigate the challenges of caregiving while also working.
States have also been innovators in tackling a myriad of other caregiving issues. This year marked the launch of the Washington Cares Fund, a social insurance fund that will help residents of the Evergreen State more easily access long-term care services. Maine also introduced a program to provide grants of up to $2,000 to families that care for a loved one at home.
I can only imagine what that kind of program would have done for my mom. Maybe she would have dipped into her savings less to make ends meet or continued her education.
What I do know after reflecting on my first year at the National Alliance for Caregiving is that the outlook for family caregivers is brighter than it was a year ago and certainly more hopeful than it was two decades ago. Visibility is higher, actions are more clearly defined, and momentum is building.
The last year has made one thing clear: we're a nation of caregivers.
But the challenges ahead are also clearer. We need to turn this momentum into bold and sustained action in support of this growing community. This could come in many forms, including Congressional action to appropriate more funds to implement the National Strategy, strengthen home-based and community-based supports, and sustain the state-based investments policymakers have made in caregiving through the American Rescue Plan. It certainly means finally passing a national paid family and medical leave policy.
The last year has made one thing clear: we're a nation of caregivers. Regardless of political affiliation or culture, caregiving is a bond. My family's story — the story of my mom — is one that millions of Americans share. It's time we recognize this bond and invest in family caregivers to make the work of caregiving more sustainable, dignified and equitable.
