National Alliance on Mental Illness
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The Leaders and the Bridge: Building a Grassroots Program for the Latino Community
by Kim Puchir, NAMI Communications Coordinator
El que quiera ser líder debe ser puente.*
Every grassroots program begins with three things: identifying a need, envisioning a future where that need is met and—perhaps most importantly—believing that it is possible to get to that better future. As educators, advocates and family members, the Latino leaders of NAMI know that their community has unmet needs. The lack of culturally competent services and linguistically appropriate materials, as well as stigma, complicate efforts to provide education and support to Latinos. On Sept. 17-18, 10 leaders from NAMI’s Latino community gathered in Arlington, Va., to lay the groundwork for a new grassroots program that would build a bridge to their vision of a better future for Latinos living with mental illness and their families.
Cada cual siente sus males y Dios siente los de todos.*
Like any construction project, bridging the gap between today’s needs and tomorrow’s services requires a plan and the labor to make it possible. Under the leadership of MaJose Carrasco, director of NAMI's Multicultural Action Center, the workers for this effort are veteran presenters from NAMI's Family-to-Family educational program (de Familia a Familia in Spanish) and other NAMI support groups from around the country. They took time out from their lives already filled with classes, health fairs and family obligations to talk about the people that have yet to be reached by NAMI’s message—those who may be affected by mental illness but lack information about the services and treatments that can make recovery possible. Over an early breakfast, they began drawing a blueprint of how to find and help these people they may have never met. Like the group members themselves, this target audience will be made up of Latinos who speak English, Spanish or a combination of the two.
Before the meeting, participants examined NAMI’s Sharing Hope program, an initiative designed to foster understanding about mental illness within the African American community. Sharing Hope targets faith congregations because they are a pillar of African American culture and support. Sharing Hope sprang from the idea that if NAMI could provide information about mental illness to church groups, these congregations could become allies in helping African Americans living with mental illness and their families move toward recovery. Would a similar model work for the Latino community?
Studies have shown that spirituality and religion can be important in recovery—in fact, Latinos are more likely to look for help with mental illness first from a non-mental health source such as a church. Since according to a Surgeon General report from 2001, fewer than one in 11 Latinos living with mental disorders contact mental health care specialists, churches are naturally on the front lines for grassroots outreach. This observation was echoed by all of the advisory group members, many of whom regularly conduct outreach to churches as a way of spreading the word about their de Familia a Familia classes. The lines between beliefs, emotions and spirituality tend to blur among many people, including many Latinos, and some health care providers have become aware that keeping religion out of discussions may be neglecting a useful avenue of communication. "I ask people what they pray about to figure out what their problems are," says Joseph M. Cervantes, Ph.D., a professor in the department of counseling at California State University, Fullerton.
One advisory group member recalled an experience with a psychiatrist who helped her rediscover the role of spirituality as she tried to cope with a family member’s mental illness. “The doctor said, ‘It’s wonderful that you are a believer, but where is that faith now?’ He encouraged me to see the difference between what I could control and what was beyond my control.” She had a positive experience working with a doctor who understood that spirituality could be a powerful source of healing, much like the Serenity Prayer, which is central to the recovery process taught by Alcoholics Anonymous.
Many advocates agreed that churches are a nerve center for many Latino communities, but finding an “in” to new congregations can be difficult—sometimes requiring years of patient effort to develop the groundwork for a class or a talk about mental illness. One participant keeps a spreadsheet to track the multiple calls and e-mails made to each pastor and the result of each contact. Others have had success with contacting prayer group leaders directly when church leaders were not receptive. The advisory group agreed that any outreach effort must be rooted in the strengths of Latino faith-based audiences. “We need something written from the point of view of a religious person that begins from the importance of meditation, prayer, familia (family), community or church,” was the consensus.
Más vale maña que fuerza.*
By lunchtime, the group had decided that it would make sense to adapt the Sharing Hope program for Latino churches. Just as if they were taking a blueprint from an existing bridge, there were several areas where adjustment would be necessary for the new terrain. Creating the trust necessary for people to share their highly personal experiences with mental illness requires a special touch within any culture, and Latinos are no exception. One person told the story about a presentation she helped lead at a prayer group. “At the end there was a complete silence. Nobody asked any questions or volunteered their experiences. We thought we failed. But afterwards we found that they had written in their evaluations what they didn’t feel comfortable saying out loud.”
Because of these and other potential sensitivities, the group strongly advocated for a gradual approach, to “entrar suave” or start gently when talking about the symptoms of mental illness and move from more familiar conditions like anxiety or depression to other issues like schizophrenia. No matter what someone’s particular diagnosis might be, they would be able to sense from the beginning that “aquí hay algo,” or “something is here for me.”
The advisory group also suggested addressing areas of special interest for the community, adding additional conditions like Posttraumatic Stress Disorder (PTSD) that are important to the Latino population. The time allotted for discussion is also important, not only to allow extra time to explain concepts in Spanish, but to give room for people of varying comfort levels to warm up to the group. Trust, after all, is one of the hardest things in the world to build. One advocate shared her experience with organizing a health fair, revealing that the successful event was the result of a year’s worth of planning and outreach on multiple levels, including flyers distributed in target neighborhoods and radio advertisements. Grassroots successes require a different kind of strength than you might expect for a construction project, but all those phone calls and relationships act like filaments that together suspend a bridge in midair—each one is essential.
Cuando Dios cierra una puerta, abre una ventana.*
Blueprints can be deceptively simple—they leave out the challenges that inevitably crop up when the real work starts. For example, each of the advisory group members has job and family responsibilities as well as ongoing classes and support groups. They are working against the tight mental health budgets of their states and the scarcity of fully bilingual providers, frequently encountering dilemmas such as people in need of NAMI support but who can’t make it to class because they work several jobs or don’t have transportation. What about the Latinos who are isolated from family members or who have gotten incorrect information about mental illness from peers or church? And then there is the lack of access to care, which is especially dire among Latinos. The Office of Minority Health of the U.S. Department of Health and Human services found that “in 2007, 32.1 percent of the Hispanic population was not covered by health insurance, as compared to 10.4 percent of the non-Hispanic white population.”
Not every question raised during the meeting had an immediate answer, but any solution will involve two things familiar to everyone sitting around the table: persistence and creativity. Other assets include strengths within the Latino community. It was proposed that the program target adults but include youth-related information that could be passed along to younger family members, a trickle-down effect that would allow NAMI to eventually reach the entire family. This strategy has been backed up by research—evidence suggests that familismo (family-centered values) has been linked to positive health outcomes.
By 2012 the Latino version of Sharing Hope may begin to have a similar level of success as its predecessor has in the African American community, adding Latino congregations to NAMI’s growing list of allies. Like in many other successful NAMI grassroots programs, a small group of leaders will create a movement, build a bridge to a better reality and create tangible support where there is now only potential. Where there was once an empty room there will be a supportive environment, listening ears and information about mental illness tailored to the needs of the Latino community.
*Folk sayings known as “dichos” or “refranes” are sources of traditional wisdom in Latino culture and may have therapeutic value.