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11/19: Visionary Leadership, Dedicated Staff Help Grow FCA

November 18, 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.

I began working at Family Caregiver Alliance (although it wasn’t called that then) in 1988. I had spent several years in publishing and public relations, and one of my clients was Family Survival Project, the organization’s original name. I quickly realized how much I preferred working in the nonprofit sector, and when I was invited to join the staff in the newly-created position of Public Information Officer (eventually Manager of Communications and Media Relations) it was easy to say yes. My charge was to help articulate and increase public awareness of the critical services family caregivers provide.

The issues were clear to me, illuminated not only by the founders’ stories of their struggles as caregivers, but also by personal experiences, as my relatives dealt with stroke and Alzheimer’s, and a close friend suffered a brain hemorrhage at a young age, leaving her husband in the unexpected, overwhelming role of caring not only for his wife, but for their infant son. These families desperately needed support and services.

It seemed then that we could tell the future: we looked at the demographics, at the aging of the Baby Boomers and the increased longevity of our parents. It was clear 30 years ago, and it’s clear now, that there would be a wave of care needs unlike anything seen before.

As the years passed, this grass-root project, an initiative of the San Francisco Mental Health Association, evolved and expanded guided by visionary leadership. After several years and much discussion, we changed the organization’s name to Family Caregiver Alliance to better reflect its mission and impact. The decades saw impressive growth in its size, scope and influence:

  • California’s innovative system of Caregiver Resource Centers (CRCs) was established with state legislative support. Each Center’s services were modeled on FCA’s, and the CRCs served every county in the state.
  • Later, the National Center on Caregiving was established at FCA, highlighting the organization’s evolving national role. Management staff regularly received requests to speak at conferences and legislative hearings.
  • FCA was one of the first social service agencies with a presence on the web. We established online support groups open to anyone in the country, in addition to online support for clients of the CRCs. A virtual library of FCA publications was posted on the website, free to anyone who needed the information.
  • The award-winning FCA newsletter grew from a small local publication to one with a national, then international, subscriber base.  
  • Local weekend camps for people with Alzheimer’s began, as did popular retreats for caregivers.
  • Early on, we talked and wrote a lot about caregiving as a workplace issue. We were instrumental in the development and passage of California’s Paid Family Leave Act, and it was an interesting experience to see how the initiative was molded and compromised on its way to passage. (And for me, a touch of Hollywood—actor/director Rob Reiner was at the press conference!)
  • It’s common now to see stories on caregiving in the media, but in the organization’s early days, it took a lot of educating to raise reporters’ awareness of the complexities and breadth of caregiving. Now reporters call the office weekly, sometimes daily, for information, interviews and resources.
  • Publications like the FCA Fact Sheets were (and are) recognized as offering reliable information and advice on a multitude of topics in a multitude of languages. They’re widely used by caregivers and social service providers, but also in legislative, medical, academic, corporate and research settings.
  • Many issues still remain of course, but they are gaining traction at national levels: paid family and medical leave for all Americans; work/family/caregiving balance; pay for family caregivers; Social Security credits for caregivers; adequate training for families when a loved one is discharged from the hospital with complicated care needs; recognition by medical staff of the important role families and caregivers play in healthcare. (Even recently [11/10/15], Gloria Steinem was on NPR mentioning the important role of family caregivers!)

When I left formal employment with FCA in 2009, it was with a profound appreciation for how this issue touches all of us in one way or another, and how much there is to learn.

At that time I was offered an interesting opportunity to explore a very different side of aging: as Communications Manager with Coming of Age, a nonprofit that worked to capture the talents and energy of people aged 50+ and to promote volunteer work and lifelong learning among active retirees. I took that message to heart, and after three years, left full-time work to pursue other interests and projects.

Still, my relationship with FCA has continued (they say no one ever entirely leaves!). I have recently participated in a variety of interesting projects and publications, including, with FCA’s Operations Director Leah Eskenazi, writing a series of columns on long-term caregiving for PBSNewshour.com.

The relationship continued in another way as well: my husband and I became caregivers for my mother-in-law with Alzheimer’s, who died at age 96, and for my mother, who recently passed away at age 91. Any time we had questions on caregiving, on assisted living, on memory impairments…we knew exactly whom to call: the smart, dedicated and responsive staff at FCA. With all the changes of the past decades, one thing has remained constant and set the agency apart: the professional skills of its knowledgeable staff.

— Bonnie Lawrence, Principal, Lawrence Communications, providing writing,
editing and PR consultation to nonprofit organizations






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