A Look Inside the Community Health Literacy Project
A Literacy Assistance Center training session at United Bronx Parents, July 2005
by Jon Steinberg, Director of Development
In New York City, and even nationally, the South Bronx has been synonymous with urban poverty at least since President Carter paid a visit in 1977 to promise renewal. For many residents, that renewal is yet to come. In 2003, the latest year for which figures are available, 46 percent of households in the largely Latino Morrisania section of the South Bronx had annual incomes under $15,000 in 2003, as compared to 22 percent citywide; 37 percent of the children were receiving emergency food assistance. The public libraries there had two books per child in 2002; the citywide average was 6.5 books.
United Bronx Parents is a 40-year-old organization that describes itself as “a private, not-for-profit ‘community-grown’ human services agency providing a variety of social services in the South Bronx and on a citywide basis.” As its name indicates, UBP was established to improve local schools, but the founders soon realized that creating a better life for the area’s children demanded a comprehensive response to poverty-related issues. UBP currently has seven sites, all devoted to providing free services throughout the community. “Our motto is, ‘Nobody goes away empty-handed,’” UBP announces in its literature. “If we don’t have the service you need, we will find it for you.” The HIV/AIDS center on Prospect Street in the heart of Morrisania makes good on the promise. It offers intensive case management services for persons living with HIV/AIDS and their partners and families, including assistance in obtaining primary medical care, emergency care, entitlements such as Social Security, Food Stamps, Home Relief or AFDC and the Division of AIDS Services and Income Support (DASIS), transitional and permanent housing, mental health services, substance abuse counseling and treatment services, family support services and nutritional services and social services.
From the outside, the center building is solid, even fortress-like. Inside, the short, narrow hallway is bordered on one side by a thick plexiglass window. A guard sitting behind it greets visitors and presses the buzzer that opens the strong interior door. The program for older clients meets downstairs. This is a rapidly growing part of the center’s work. “We used to have five people in the group sessions,” said Center Director Delores Anderson, a tall, formidable African American woman. “Now we have more than fifty.” The intensive case management program is located one flight up. There, in the back, down a long, dark hallway, the training room is light and spacious, with high ceilings and nearly bare yellow walls. It bares a striking resemblance to a 1960s high school classroom, down to the metal and yellow plastic chairs lined up in even rows facing a table at the front.
When Delores introduced Winston Lawrence as the Literacy Assistance Center health literacy specialist and Lisa Van Brackle as the LAC Deputy Director, they looked out on 18 staff members filling most of the chairs. All seemed to be in their late 20s, 30s, or early 40s; fifteen women and three men. Almost all were Latino; the rest were African American. Many lived in the immediate neighborhood, and most of the rest also lived in the Bronx. A majority were case managers, who help clients obtain a broad spectrum of health care, housing, and other services. Most of the others were counselors, whose specialty is intensive one-on-one and group sessions that explore emotional and psychological issues. As became clear, clients they were working with were not that different from people they might have seen on the street where they lived, or even some of their relatives.
Before saying anything else, Lisa asked the participants to rearrange their chairs in a circle. This they immediately did, with great energy. Winston followed up by reading two quotes from health literacy studies, one saying HIV-positive adult patients missed more treatment doses than patients with higher literacy, and the other saying patients with poor health literacy skills were five times more likely to misinterpret their prescriptions than those with adequate skills.
Lisa asked for a volunteer to play a patient who had just learned she needed tests for an unexplained illness and had to get home to take care of her children. When no one volunteered for this role-play exercise, she turned around and recruited the young woman sitting behind her. Rene, an alert, slightly built young African American with short, dark hair, does case worker follow-up, which means she makes sure that clients actually obtain the services they need. That entails endless phone calls, copious paperwork, and escorting clients to health clinics and other service locations. Reading from a script, Lisa rattled off a standard, speech filled with large words and medical terminology, occasionally peering down over her eyeglasses at the seated “patient,” assuming an air of impatient disdain. She concluded by saying, “If you have any questions, ask your counselor.” After hearing the entire speech, Rene admitted that she had no idea what she had heard and made several attempts to ask a question. Each time, Lisa cut her off with a brusque, imperious reply: “Ask your counselor.” All of Rene’s 17 colleagues leaned forward in their chairs, listening intently, as if they were almost convinced the interaction was real. “How do you think this patient felt?” Lisa asked them afterward. “Puzzled,” said one. “Confused,” volunteered another. “Angry,” offered Randy, a heavy-set African American counselor with a gold earring and a New York City Mission Society t-shirt. “Yes, angry,” responded Lisa. “I would have wanted to clock her.”
Winston then distributed a paper, asking the participants to raise a hand when they had finished it, and not speak to anyone else about what they had read. The room fell into a puzzled silence as everyone tried to read a document with many of the words spelled backwards. Some quickly figured out the problem, struggled to decipher the code, and eventually raised their hands. Others continued to stare at the paper, brows furrowed. Lisa asked one of the women raising her hand to read the paper. She did, with some difficulty, skipping a few of the longer backwards words. “How did you feel?” Lisa asked to circle. “Embarrassed,” called out one participant. “Frustrated,” said another. By this time, it was clear from their responses that the participants understood the issue the workshop was going to deal with, and knew that at least some of their clients were confronting it in one form or another.
Winston then listed a series of issues he had encountered in interviews with BPA staff members on an earlier visit: Most communication was oral, in part because many clients have a variety of difficulties with written information. A large number are undocumented. Some can’t write at all, except to sign their name. Others have trouble reading materials downloaded from the Internet. In groups, people who can read well sometimes are disdainful of people who can’t. (Hearing this, several participants murmured agreement; others nodded.) A lot of clients have a drug problem.
“What can you do when you see the client you are talking to has trouble getting the information orally?” Lisa asked. “Draw a picture,” offered one participant. “Role play,” said another. “Demonstrate,” said a third, offering the example of showing someone how to put on a condom. “Show something visual, like a chart,” someone else suggested.
Lisa went over the list of Knowles’ five characteristics that distinguish adult learners from children: They are self-directed, bring their experience to learning, have a strong orientation to learning for a purpose (“This makes you perfect teachers,” she commented), they have to be ready to learn—and usually are; and they have to be motivated to learn. “Now,” she said, “What can you do to invite people to begin to exhibit these traits? I’m going to divide you into five groups to see what suggestions you can come up with for one of these characteristics.”
Once in groups, the participants immediately became absorbed in their task. Although all were staff members at United Bronx Parents, they worked at a several of the 7 sites; some did not know the names of their colleagues. One group chose the “self-directed” trait. “If I’m self-directed, I know who I am,” said Randy. “A lot of the clients don’t feel they have strengths. I have to do some strength-based counseling, identify goals, tell them, ‘you don’t survive in jail, you don’t survive on the street without strengths.’ And you have to identify their weakness too.” The other two members of the group nodded in agreement. “Sometimes they tell you what they think you want to hear,” one of them pointed out. “You have to dialog with the client to understand what their priorities are,” Randy added. “Our values are different, but you have to understand theirs.”
The groups reformed the circle and reported on their conclusions. One group had chosen the trait “experience,” and suggested that sometimes changing their environment is an effective way to make clients feel more comfortable about bringing their experience to the interaction—for example, by taking them outside for the counseling session. “Right,” responded Lisa. “You want to draw out their positive experiences so they leave feeling better. They have to feel that you recognize their experiences.”
“I know you people are familiar with Maslow’s hierarchy of needs,” a young Latina put in. “You have to see where they are. When you talk about something with a client, other things are going to come up.” After all the groups had reported, Lisa summed up their suggestions: It’s important to use rewards, positive reinforcement; meet the clients where they are, be culturally sensitive, show them positive options, ask open-ended questions—“Ask how are you today and they’re going to say ‘fine.’ Ask them ‘what did you do today?’ and you’ll get a lot more.”
“Active listening, reframing what they say and making good eye contact, make a real difference,” added Randy.
Concluding the exercise, Winston suggested that everyone think of one client and ask, where is this client on the continuum of these characteristics? He then asked the group if they could tell if someone can’t read just by looking at them. People thought about it, and most shook their heads back and forth. “What are some clues that one of your clients can’t read?” he asked, preparing to write them on a flip chart. The group began calling out:
“I didn’t finish school.”
“They sign without reading,” said one, demonstrating with a sweeping gesture with her arm.
“They withdraw.”
“They put an ‘x’.”
“I don’t have my glasses,” suggested Winston, drawing laughs of recognition.
“They say, ‘I don’t understand.’”
“They read backwards.”
“Sometimes you can tell by how they speak.”
“They misspell words.”
“They react defensively.”
“Sometimes they can read and write in Spanish but not in English.”
“They say, ‘Can I take this home?’”
After a brief pause, a Latina in the corner who hadn’t spoken before interjected, “Now that you mention it, I have one client who has to go to the clinic every morning to be sure he takes his medication.” She paused briefly, savoring her realization: “It’s because he has low literacy.”
After a break for lunch, Lisa and Winston distributed and briefly discussed other worksheets, one on strategies for communicating with clients who have limited literacy skills. Another, on areas of learning difficulties, such as complex material, had spaces opposite each where a participant could respond to the question, What can I do? Winston noted that even people who have good literacy skills may have trouble understanding information if it is conveyed with unfamiliar vocabulary. It might be a single word that stops them; while puzzling over it, they don’t hear anything said subsequently. He handed out a sheet of words to watch, with plain English translations, and read each one, explaining that it was just as easy to use the readily understood term as the other.
It was almost one pm. After reiterating salient points covered in the training session, including the importance of seeing their interactions with clients as an opportunity to act as literacy teachers, Winston and Lisa distributed evaluation sheets. All of the participants answered every question and returned the sheets before departing. Unanimously, they gave the training session a rating of four or a five on a scale of five; many added other praise. To the question, “What did you learn from today’s session?” the responses generally mentioned learning how to identify low levels of literacy in a client and learning how to communicate better. In the words of one participant, “I learned how to provide better services to our clients that are in need. I learned how to be patient with others who are illiterate.” To the question, “How might you incorporate what you have learned into your work?” one participant responded, “By executing what I learned at home and at work.” In answer to the question, “What was the best part of today’s session?” most of the participants cited the interactive segments, the role-play, and breaking down into groups—“getting an idea of what my co-workers think about what we do.” One had a more operational response: “Explaining to the client that there are opportunities for them to grow and learn.” When one participant, the Director of Outpatient Services, handed back her sheet, she used the opportunity to leave Lisa with one request: “You should do this for our other staff members.”