While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
Position: Former Director, El Portal: Latino Alzheimer's Project
Los Angeles, Calif.
"She asks the type of questions that get people to think creatively. She'll just very softly urge people to look beyond."—Dr. Maria Aranda, associate professor, School of Social Work, University of Southern California
"The reason I'm not suing is that you're a nice girl."—Elderly Santa Monica woman wrongfully placed in a psychiatric ward until Trejo intervened
"I see myself as a conscience of the system ... my job is to try to help providers see the clients in ways they haven't seen them before."—Laura Trejo
Laura Trejo was about 16 when her grandmother had her first stroke. Laura, who had moved from El Salvador to Los Angeles five years before with her parents, was the most bilingual member of the family. So as her grandmother, who spoke no English, suffered other strokes and lost cognitive function, "I was the person who communicated with the doctors. Being the interpreter was part of growing up. People tend to defer to the most fluent English speaker."
"I would see other people discount who I knew my grandmother to be," Trejo recalls. "It was disarming to see other people question it. They saw a frail patient. I saw a powerful grandmother. I wanted to get some of that power back to her."
Her grandmother died six years ago (in 2000), and looking back on her illness now, Trejo says it taught her two key lessons: The need to respect the dignity of the elderly and how cultural and language barriers can make this difficult. Those were the lessons she brought to her life's work with a private social agency, with the City and County of Los Angeles and as an internationally known expert on Alzheimer's disease in Latino populations.
In 2002, they brought her a Robert Wood Johnson Foundation Community Health Leadership Program award.
"The vision that has always motivated Trejo," says Debra Cherry, Ph.D., associate director of the Alzheimer's Association of Los Angeles, "is sharing what she knows to improve the lives of those who cannot speak for themselves, whether marginalized ethnic minority groups, older adults or those who experience mental illness."
"I always saw this as a new area where so much needs to be done," Trejo says. "I've been very privileged to work in this."
Trejo says she knew from the age of 10 that she would go into the mental health field, though she is not sure why. She entered the University of Southern California (USC) in the late 1970's expecting to become a clinical psychologist, perhaps working with children. Then she took some electives in gerontology and became fascinated with the subject. "I think my interest in aging was always related to being around two very strong grandmothers," she said—including her paternal grandmother, who never left El Salvador. "That always inspired me. I had a very positive image of older people."
After graduating in 1982, she joined Wise Senior Services, a nonprofit organization that held contracts with the City and County of Los Angeles. Hired as a long-term care ombudsman coordinator, Trejo had responsibility for some 5,000 seniors residing in nursing homes in the Long Beach area. In her first year, she remembers visiting a nursing home, noticing a Latina woman who spoke no English and having someone on the staff tell her, "She doesn't understand anything. She's demented."
Trejo looked at the woman and said, "Buenos dias, Senora."
"She grabbed my hand," says Trejo. "She said, 'Get me out of here.' I'll never forget that." As it turned out, the woman—who had no family—was communicating quite lucidly, but only with Hispanic persons on the night custodial staff, who did not report this to the professionals. She was not demented and was quickly transferred to a nursing home whose staff included Spanish speakers.
"It reaffirmed my belief that even when someone says a patient is demented, you don't assume they know. It validated my intuition that if you're there to talk to everybody, talk to everybody. I could see how isolated someone could get very quickly. It was one of those moments when you know why you are here."
In 1986, she Los Angeles County hired her as coordinator of older adult services, a position she was to hold for 17 years. At the time, she was also enrolled at USC in a double master's program (gerontology and public administration). Over the next few years, Trejo became increasingly aware of the problems Latinos with Alzheimer's disease and their families faced. Latinos in the United States had historically been a very young population, and the problems of both aging and the lack of services available to address Alzheimer's disease and other problems of the elderly were unfamiliar to many.
"Up to that point," she says, "even very knowledgeable Latino gerontologists would tell you, 'We don't know where these clients are.' It was very frustrating. We knew they had to be out there suffering in silence and we didn't know where to find them."
In 1990, she and Rosa Ramirez, a fellow USC graduate who was working for the Project Head Start preschool program, blanketed Latino neighborhoods in Los Angeles with flyers announcing a community meeting on Alzheimer's disease. "We didn't know how to do a targeted mailing," she says.
They posted notices in churches and schools. They described the issue as "working with older people with memory problems," rather than Alzheimer's disease. The reason: Many people in the Latino community at the time thought of Alzheimer's as a disease that affected only Jewish people.
When 25 people showed up, Trejo and Ramirez were initially disappointed, but they quickly got over it. "We were looking for needles in a haystack and we found 25," Trejo recalls.
"I was fresh out of college and Trejo was called in to do the presentation," Ramirez says. "I was awed and amazed with the conviction with which she spoke about helping older adults, and the role we could play." Although Trejo was well versed in the statistics and science of gerontology, "What I was most impressed with was her compassion and call to service," Ramirez says.
The early 1990s turned out to be a good time to attack the issue. The national Alzheimer's Association was focusing more attention on the particular challenges of reaching minorities, and the federal government was preparing to fund inter-agency demonstration projects through the Health Resources and Services Administration. "It was an alignment of need and opportunity coming together," Trejo says.
Jim Howard, who at the time was heading up the Alzheimer's division of the California Department of Health Services, was seeking one of the 15 federal grants and looking for a place to base the project. Los Angeles was the likeliest candidate because of its significant underserved population and "we had had very positive experiences working with agencies in Los Angeles County, including the Alzheimer's Association and USC."
What was needed was someone to run the program and keep the agencies working together rather than stepping on each other's bureaucratic toes. "We needed somebody who had an extensive network," Howard said. "Someone who would focus on the real needs of real people. Trejo was the glue that brought this variety of people together. She knew how things had to get done within the system. She doesn't mince words but she's always professional."
The new project was launched in 1992 with a three-year $500,000 grant that was later renewed. "El Portal"—literally, "The Doorway"—was run by a coalition of social agencies and coordinated through the local Alzheimer's Association, which asked Trejo to run it as a volunteer. For the next four years, she would work 70 hours a week, running the project while still holding down her job with the county. "It was a long four years," she says. "I didn't get a lot of sleep."
One of the first El Portal projects was a survey with California State University, Los Angeles, that showed just how unaware of available services the Latino community was. Very few families with a relative suffering from dementia would think of going to their family doctor—if they had one—or to a public agency. More likely answers were "the police" or "missing persons."
El Portal began a massive effort to educate the community, ranging from donated radio and TV time, to a bilingual help line, to the daughter of an Alzheimer's patient who distributed post cards. It also provided training for professionals working with the community.
There were also some humbling setbacks. The help line was seriously underutilized because callers did not realize they were welcome to use it repeatedly, not just for one referral. A meeting about a new day care center drew an empty house because the literature announcing it stressed the "burden" it would lift from caretakers rather than the programs offered. The latter problem required a focus group to sort out, and only one person there would tell Trejo what the problem was. "It was like she was appointed to tell me," Trejo recalls, laughing.
At the Department of Mental Health, Trejo was starting another new program called Genesis—mobile field teams to do on-site evaluations of persons who appeared to be suffering from dementia and other mental health problems. The teams were made up of a social worker and a nurse. "They're talking to each other right there. For older people it's harder to sort out whether it's a physical or a mental problem."
Trejo says this also marked a "groundbreaking" form of cooperation between the departments of mental health and aging.
The results were impressive. Only 3 percent of the people visited by Genesis teams after referrals by law enforcement or other agencies had to be hospitalized. In some cases, she says, the older person just needed a hearing test or a hot meal, not a hospital room.
The Genesis workers were trained to look for reasons to question whether a person was really experiencing some form of mental disorder or needed hospitalization. "The role of my staff was to remember that they were there, first and foremost, to be the advocate ... Our motto was always, 'What if they're right?'"
Trejo specifically remembers one incident at the beginning of Genesis. It involved an elderly Santa Monica woman who was unnecessarily hospitalized following a fracas that started when she complained about mice fleeing to her house after they were gassed out of a neighbor's house by an exterminator. "Everyone thought she was delusional. It was heartbreaking that we had done this to her," Trejo said. She asked the woman to be the keynote speaker at a quarterly meeting of mental health managers. "I wanted them to hear what it was like, in her own words, to not be listened to."
Under El Portal, participating agencies started three new day care facilities for Alzheimer's patients, worked with local diagnostic centers, established support groups and hired care advocates for patients and their families and a part-time elder law specialist. Eventually the project involved 11 agencies. Over the next decade, services quadrupled for Latinos suffering from dementia and their families.
Trejo had become increasingly concerned about the dearth of Spanish-speaking professionals in agencies dealing with the aged. Many of the positions required master's degrees, and few Latinos held them. As part of the project's strategy, staff were encouraged to return to school and pursue advanced degrees. Several did and joined the ranks of trained professionals in the aging network.
"I saw how she worked to bring together people from different organizations, different perspectives about what could be done," says Ramirez, who took over the directorship of El Portal in 1996 and is now with the National Council on Aging. "She has the gift of being able to unify people for a common purpose."
Genesis and other initiatives continue, however, El Portal, which was never intended to be a permanent program, was phased out in 1999. Its findings changed how local service providers serve this group and are now being replicated in minority communities in other cities in California and elsewhere. Trejo has also become involved in the fight against Alzheimer's disease in Latin America, traveling to El Salvador, Guatemala, Mexico, Puerto Rico and Cuba to lecture and help set up programs.
With the support of Peter Braun, executive director of the Los Angeles Alzheimer's Association, she used the $105,000 Community Health Leadership award to establish a field office of the Alzheimer's Association in East Los Angeles, the first health charity in the city to open a headquarters in a minority community. (She also received $15,000 as a personal award.) The Greater East Los Angeles Regional Office of the Alzheimer's Association is located in a two-room suite of offices in a highly visible corner building in the heart of East Los Angeles. "Local community businesses have subsidized almost everything in the office," she says. "That was wonderful." The grant funds will run the office for two years, and a fund-raising effort is underway to continue beyond that. "We just needed to have the physical presence there," she says.
The visibility provided by the award also led to increased professional responsibility. A recruiter seeking candidates for a general manager position in the City of Los Angeles Department of Aging saw the Robert Wood Johnson Community Health Leaders press release and called her. "At first I thought she was a reporter calling about the award," Trejo says. "I wasn't looking for a job." She was hired that December, becoming the City's first Latina general manager.
In the future, she wants to increase her work in Spanish-speaking countries and is particularly hopeful about using the Internet to spread knowledge about successful programs. She plans to work closely with Orien Reed, a former television news reporter who is the incoming president of Alzheimer's Disease International, the worldwide umbrella organization. "She has an incredible vision of a world without Alzheimer's," Trejo says of Reed.
While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
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