By Jessica Hilberman

Moira Fordyce is a geriatrician who has specialized in home care, nursing home care and hospice care for more than 20 years. She is a clinical professor of medicine at the Stanford University School of Medicine, Stanford, Calif., and has served as a member of both the HAN Leadership Council and the HAN editorial board. Reflecting her interest in caregiving issues, she recently signed on as chair of the California Caregivers Coalition. In this interview, she offers observations on her experience working in the leadership of the coalition and provides advice for caregivers in other states looking to replicate the model developed by the California coalition.

What needs does the California Caregiver Coalition fulfill?

When you say California, most people think of the cities of San Francisco, Los Angeles and San Diego. However, when you fly over our golden state, it becomes obvious that it is largely rural, and covers a wide area, with coastline, mountains and desert. Caregiving in rural areas brings challenges different from caregiving in urban centers. Being aware of these challenges, CCC provides networking for the diverse groups active in caregiving matters throughout the state and offers support to them, sharing resources and expertise, and above all keeping them updated about caregiver-related legislative issues in the state Capitol and how to influence these issues.

For example, after 10 percent budget cuts in California healthcare funding were announced this year, a call for support went out from the Alzheimer’s Association. CCC forwarded it to our members, and in mid-April, that call helped bring together the largest-ever Alzheimer’s-related protest -- a rally of some 1,500 people on the steps of the Capitol. As a result of the rally, both the Assembly and the Senate budget committees rejected the 10 percent cuts that the governor had proposed for the Alzheimer’s daycare resource centers, adult protective services and in-home supportive services.

Our next job as advocates is to ensure that the governor doesn’t eliminate these items in his final budget process. When the time is right, we will issue a call to write letters to the governor in support of maintaining funding. Our coalition members will respond.

How is the organization funded?

At present CCC does not have a reliable funding source. We have received several small grants to help us with the two educational symposia we have done for health professionals and caregivers, as well as for a “Sharing and Caring” day, where we brought together family caregivers with legislative staff from local and state politicians' offices. For these events, space was donated. AARP also has been supportive of CCC: They let us hold video-linked quarterly meetings simultaneously in their offices in two California cities -- Sacramento and Pasadena -- and they arrange monthly teleconference calls for us. They also have assigned a wonderful staff person to help with our various endeavors.

How was the coalition established -- and with whom does it work?

In June 2004, the AARP Foundation and the U.S. Administration on Aging provided a two-day coalition training to assist organizations and groups in forming and sustaining caregiver coalitions. They taught about strategies that work as well as factors that might impede progress or threaten the success of the coalition. As a result, the California Coalition for Caregivers was created. Following that training, a coordinating council created the infrastructure and operational plan that prepared the California Coalition for Caregivers to launch in 2005.

What are the major challenges caregivers face in California -- and how does the coalition help caregivers overcome these challenges?

Our major challenges include the size of California, the diversity of its land and people, budget cuts and the high costs of gasoline and foodstuffs -- especially in rural areas, where there is no readily available public transit. Communicating among our membership and lobbying in Sacramento are some of the ways in which CCC is trying to address these challenges. But some of these problems need solutions at the national level.

What tips would you give people looking to replicate this model or to start their own coalition?

Don’t use any one coalition as your model. Look at the various existing ones and take tips from all of them, because each deals with different issues. The New York City coalition is dealing with one large city, so communications and organization is easier for them than for us; Hawaii is working with a relatively small population, a string of islands and a helpful legislature that is willing to listen to them and often act on their recommendations. Here in California we have a sizable state and a large, diverse population, so we face our own distinct challenges.

Jessica Hilberman formerly served as a senior associate editor at the American Society on Aging, San Francisco.

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