THEME 3: Empowering the Community

    • October 1, 2008

Long BeachMoms Advocate for Clean Air
"I don't understand much about politics—believe me, not a whole lot," Evangelina Ramirez, speaking in her native Spanish, tells a Long Beach forum on local air pollution in early 2005. "But what I do understand is I have a child with asthma."

With that introduction, Ramirez outlines her transformation from a mother who was up in the middle of the night worried that her daughter was choking to a community activist fighting a major freeway expansion through her urban neighborhood.

He words, translated into English by a colleague, tell the story of how she pushed her doctor to explain what asthma is all about, how she learned to clean her home with vinegar and baking soda, and how she started using special bedding fabrics on her daughter's bed to block dust mites and other allergens.

"Even with that, it wouldn't stop. The girl continued to have these asthma attacks," Ramirez says. "It didn't matter what I was doing inside my house because the problem was on the outside, and air comes in wherever you are."

Ramirez is a member of what has come to be known in Long Beach as the LBACA Moms—a corps of parents from low-income, inner-city households whose personal struggle with pediatric asthma has turned them into committed, outspoken advocates for clean air and better housing.

LBACA stands for the Long Beach Alliance for Children with Asthma. Supported initially by RWJF through its national program Allies Against Asthma and now by other resources, the alliance instituted a series of interventions to help families, health care providers and school personnel control childhood asthma in Long Beach's urban, ethnically diverse population.

Going beyond a one-on-one approach to improving asthma management, the alliance included in its arsenal of activities an effort to improve the region's environment—both outdoor and indoor.

The core of this grassroots work—and its public face—has been the LBACA Moms. "They are just an incredible, dynamic group," says Elisa Nicholas, MD, MSPH, chief of staff of Miller Children's Hospital, CEO of the free-standing Children's Clinic and founder of LBACA. "They've become leaders in their community."

In addition to speaking at public events like the 2005 forum, the parents have appeared before local and state governmental agencies, including the California Air Resources Board—always providing personal testimony on the ordeal of raising asthmatic children in dirty air and sub-standard housing.

A major focus has been the heavy diesel truck traffic in and out of the Port of Long Beach, one of the world's busiest container ports and a next-door neighbor to many of the LBACA families.

Joining with other groups, the parents successfully opposed initial plans for a major expansion of Interstate 710—a 24-mile-long artery connecting the port with the Los Angeles freeway system. They are now working to help shape the redesign of the I-710 expansion project.

Through involvement in the I-710 fight, LBACA became aware of other issues—including the city's dearth of good, affordable rental housing. As a result, the parents joined a push for funding to build low-income units.

Ramirez, one of the LBACA co-chairs, has been a prominent part of these efforts. When the Long Beach Press-Telegram published a series in 2004 on the area's air pollution problem, she and her family of five—including Lorena, the daughter with asthma—were the subject of one of the articles.

Living in a one-bedroom, $500-a-month apartment wedged between the port and I-710, the family had to contend not only with mold, rats and "las cucarachas" (cockroaches) inside but diesel fumes outside, the paper reported.

"Sometimes in the evening, we go to the park, we feel it in the air, the smells," the article quoted Ramirez saying. "It's so bad."

The Allies project helped Ramirez and others like her gain their public voice. Starting with a nucleus of parents trained to be community health leaders through an earlier initiative that was not asthma specific, LBACA provided education in pediatric asthma control and—with support from the California Endowment—training in advocacy.

"The Allies grant allowed us to build that base of knowledge among the parents," says Nicholas.

MilwaukeeAllies Attack Asthma Door-to-Door
The Allies Against Asthma project in Milwaukee also worked to empower parents with asthmatic children but through a different approach.

Fight Asthma Milwaukee Allies (FAM Allies), the coalition supported by the RWJF program, partnered with a grassroots service agency, Family House, to motivate parents of asthmatic children to improve asthma control in their homes and neighborhood, one of the city's poorest.

"We found this place [Family House] and said, 'Would you be the parent organizing center?" explains John Meurer, MD, MBA, director of the FAM Allies coalition. "It's evolved to be just a gem." Meurer is chief of general and community pediatrics and an associate professor of pediatrics and population health at the Medical College of Wisconsin.

With support from the Allies project, Vicky Edwards, the Family House outreach coordinator, went door-to-door in the surrounding section of North Milwaukee, identifying households with pediatric asthma and trying, as she puts it, "to empower these families with knowledge so they can take control of their situations."

Edwards, a resident of the neighborhood, found many families with asthmatic children, but engaging the parents proved difficult, she says. Miss Vicky—as she was frequently called when she came knocking—often found the parents wrestling with more immediate issues than dust mites and cockroaches, like too little food, no rent money, drug abuse and soured domestic relationships.

One lesson she and Meurer learned is that serious personal difficulties must be addressed before successfully tacking asthma, which parents generally saw as episodic coughing, not a chronic disease.

In response, FAM Allies provided funding to support a community food pantry at Family House, and Edwards tried to provide what assistance she could as she made her rounds. In one instance she made arrangements with a funeral home for free burial of a prematurely born child whose mother had no money.

Persisting, Edwards managed to develop a cadre of mothers who did learn about asthma management and took steps to manage their child's disease. One was Sylvia Sharp, the mother of four children, two with asthma.

"I now know what to do," says Sharp, explaining that Edwards taught her the importance of cleaning carpets, using the right cleaning supplies and keeping dogs and cats away from her children.

Additionally, with Allies project support, Sharp took a computer course, learned to type and temporarily joined the Family House organizing effort. In addition to going door-to-door, she helped get neighborhood parents together for asthma meetings and handled office chores for Edwards.

With assistance from Sharp and Edwards, the parents' group composed a letter to area landlords requesting their help "to create and maintain dwellings that promote the environmental health of our children." The request drew two positive responses, but the group subsequently decided that working with the local health department was a surer route to housing improvements.

More recently, the parents made plans to institute what they call Women Empowerment Days—a series of Saturday self-help programs for women featuring presentations on such topics as smoking, drug abuse and health care. While they still need to secure funding for the series, their interest and planning effort were themselves affirmation of neighborhood progress, Edwards suggests.

When the Allies project ended in early 2006, the organizing effort led by Edwards had reached 242 residents and was continuing, FAM Allies reported. Meurer is making no prediction about the end result.

"It's a roller coaster ride," he says, explaining that parents get involved and then drop out. Maybe the family car breaks down, and they can't get to a meeting. Or maybe it's worse.

What is clear, he says, is that in this poverty-stricken area of North Milwaukee, there are parents of asthmatic children who are passionate about improving the situation. "We're trying to develop (their) leadership skills," Meurer says.