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11/5: FCA—A Lasting Legacy for Caregiving Families

November 5, 2015

As part of FCA’s 30 Days of Caregiving blog during National Family Caregivers Month, former FCA staff members were asked to be guest bloggers as part of a unique “Throwback Thursday” series. They were asked to address how FCA has influenced their work in their current positions, what they learned at FCA that they have carried forward, and if they were King or Queen for a day, what they would make happen for family caregivers. FCA is pleased that so many of its former staff members, wherever they may be, have remained in the fields of health care, social services, research and public policy, and still are advocates for caregiving families.

As a gerontological social worker and a policy researcher, my career has focused on family care issues for about 30 years now—well before family caregiving for an aging relative or friend became the “new normal” of my generation, the baby boomers. Now I work at the AARP Public Policy Institute as a Senior Strategic Policy Advisor, continuing to collaborate with my colleagues to inform and stimulate public debate on family caregiving and long-term care issues.

But most of my professional career was at FCA where I worked for 23 years, helping to create a national movement on caregiving. I began as the Manager for Research and Information Programs where I directed research, policy, technical assistance, and information components for California’s Caregiver Resource Centers—modeled after FCA’s programs and services—the first statewide system of caregiver support services in the U.S. In 2001, Kathy Kelly and I established the National Center on Caregiving at FCA. I had the great opportunity to direct the National Center for eight years.

To this day, I remember a conversation I had with the organization’s co-founder, Suzanne Harris, when I began work at FCA (then called the Family Survival Project) in 1985. Suzanne had been a family caregiver for her husband, and founded FCA in 1977 along with a small grassroots task force of other family members caring for relatives with adult-onset cognitive impairments. Suzanne said to me: “You need to develop a uniform caregiver assessment tool for California’s Caregiver Resource Centers.” She believed deeply that wherever a family caregiver lived, they should have an assessment of their own needs and access to the same supportive services offered by FCA’s model program for families in the San Francisco Bay Area. Suzanne understood that while systematic assessment of people with chronic or disabling conditions occurred in medical and social service settings, family caregivers’ own care-related strain and compromised health and financial resources, were often overlooked. In the mid-1980s, an assessment of family caregivers’ needs was non-existent in care settings.

At the time, I had no idea what a “family caregiver assessment tool” was or why the concept of caregiver assessment was important. But over the years, I listened to many family members share their worries and concerns. I also listened to FCA’s social workers who worked on the frontline with many family caregivers day in and day out. I learned that the goal of assessment is to help the person in need of care and the family providing the care achieve the best possible quality of life, based on their values, needs, resources, and preferences. Just asking a family member, “How are you? What help do you need?” can make a huge difference in easing the strain on caregiving families who are dealing with the increasing complexity of family care today. If family caregiver needs are not recognized and addressed by health and social service providers, they can risk burnout from prolonged distress, the physical demands of caregiving, and the high cost of health and long-term care.

I have learned that change is slow, but it can happen. In 2005—17 years after developing the California Caregiver Resource Centers’ initial family caregiver assessment tool in 1988—I had the privilege of directing FCA’s National Consensus Development Conference for Caregiver Assessment. At that landmark meeting, consensus was reached by a group of nationally recognized leaders about fundamental principles for caregiver assessment to guide public policy and practice. Today, at least 15 states include an assessment of family caregiver needs as part of client assessment tools in Medicaid home and community-based services. In 2013, the federal Commission on Long-Term Care called for identifying and assessing family needs, especially when care plans are dependent upon them, and that family caregivers should receive supportive services when needed. And for the first time (in 2014), the Centers for Medicare & Medicaid Services (CMS) formally recognized the importance of assessing the needs of family caregivers when their assistance is part of the care plan for the older adult or person with disability. 

Over the last three decades there has been remarkable progress in recognizing and addressing the needs of caregiving families. FCA has been at the forefront in education, advocacy, services, and research—leading the way for positive social change for America’s family caregivers. I’m so proud to have worked with so many dedicated FCA staff and board members. We continue to work together to improve the lives of caregiving families. Together, we really are making a difference.

— Lynn Friss Feinberg, MSW, is Senior Strategic Policy Advisor at the AARP Public Policy Institute. In 2007–08, she was the John Heinz Senate Fellow in Aging, working in the office of Senator Barbara Boxer. Currently, she serves as Chair of the Board of Directors, American Society on Aging (ASA), and is a member of the Institute of Medicine’s Committee on Family Caregiving for Older Adults. Follow Lynn on Twitter @FeinbergLynn.

 #ThrowBackThursday #TBT
Left to right: FCA staffers Carol Whitlatch, Tammy Pilisuk, and Lynn Friss Feinberg, late 1980s



View all 30 Days of Caregiving blogs (to date) at caregiver.org/blog.