Breathing Lessons, Part IV
"Now that I know how to control his asthma, I'm not afraid
Before Shawn started the Oliver Community asthma program, his mother knew relatively little about the disease. "I was scared when he used to get sick because I couldn't control it," she says. Now, however, she knows what to do when her son feels an attack coming on. She's learned that cigarette smoke can trigger an attack, so she tries to keep Shawn away from places where people are likely to smoke. And if her son happens to come into contact with smoke, she can handle the situation. "If we go to the mall," she says, "and someone is smoking, then he'll get sick, so I'll have to take him outside."
She adds: "Now that I know how to control his asthma, I'm not afraid anymore."
The home visit lasts about an hour. Afterward, Morgan explains that it was a typical session with a family that has been in the program for a while. For a new family, she says, Matthews would have looked around the house to see how clean it was, and she would have asked about such things as telephone service and health insurance.
"Actually, that was a good visit, in the sense that it was comfortable for us," she says. "There are some houses where the parents are very congenial, but the environment is just not comfortable." She's actually seen rats running around on the floor. "Right around your feet," she says. "And some houses smell really bad. But I always try to remember that it's their home, and if they can live with it all the time, then I can live with it for a few minutes. So I don't make a big deal about it."
One family enrolled in the program lives on a narrow street that Morgan calls "drug row."
"I don't allow the community health care worker to go to that home without someone going with her," she says. "And usually it's me. I didn't realize how dangerous that street was until one day we went there to drop off some forms, and I stayed in the car because she was only going to the door. And the houses next door to this house are both abandoned. And one of the houses has no windows and doors. And these people were just pouring in and out of this house. I thought, 'What is this?'"
It slowly dawned on Morgan that she was parked in front of a crack house.
"The family, it turns out, is involved with drugs, as well," she says. "They don't have beds. The first day that I went in there, the kid that we had enrolled was actually sleeping on a sofa pillow on the living room floor. She was home that day because she was sick. She had been to the emergency room the night before. We had just enrolled her in the program. She hadn't gone to any sessions yet. She was sound asleep on the floor, sleeping like a log. And people were coming and going, walking over her. So that's a really tough house.
"However, the parent, even though she is caught up in drugs, is very conscious of taking care of the kid. She makes sure that she gets to her appointments, and she tries to make sure that she gets to school. She works with us to try to use all the resources that we have."
|Controlling asthma requires changes in environment and habit. It requires planning and understanding. In other words, poverty and asthma are a bad fit.|
The house, she says, doesn't have a phone. "A lot of the families don't have phones," she explains, "because they may have huge phone bills that they didn't pay. It's a big problem for us. If a kid has an attack, the neighbors may not have a phone, either, and because of the drug trade in the neighborhood, there aren't any pay phones. The city takes them out. So you could die. How are you going to call 911 if your son or daughter is having an asthma attack?"
Morgan's point about phone service makes it clear that inner-city asthma is much more than a medical problem. In fact, under most circumstances, the disease is relatively easy to control. Many asthma sufferers take some kind of daily preventive medicine to thwart attacks. "But this is a concept," Eggleston says, "that is not easy for people who live on a sort of day-to-day basis, who don't plan ahead very far, who respond to crises in their environment by habit to understand. It requires planning and understanding. It means they have to change a lot of behavior." In other words, poverty and asthma are a bad fit.
Middle-class families, on the other hand, are used to the idea of preventing bad things before they happen, and they have the resources to make the concept work--by buying health insurance, for example. "But people in the inner city don't have access to good medical advice and care," he says. "And the system is hard for people to work with here. It's hard in some very obvious ways but also in some very subtle ways. For example, transportation to your doctor is not easy because nobody has a car. So you have to take a bus." That can take a long time, Eggleston says, and when you finally get there you may have to wait a long time to see the doctor. "It's not inconceivable to spend half an afternoon going to see a doctor. And middle-class people would not put up with that."
Then there's the matter of getting a prescription filled. "The people in this neighborhood," he says, "if they want a new prescription, their doctor has to write it out for them, and it has to be handed over to the pharmacist. You can't call it in. That's a Medicaid rule." The federal health program also has a three-month limit on prescription drugs, which makes it difficult for asthma sufferers to maintain a constant supply. "Medicaid doesn't want people to waste their services," Eggleston says, "so they pretend that there's no such thing as a chronic disease." (People with private health insurance, on the other hand, can usually can get one-year, refillable supplies of drugs. "And if they start to run out," he says, "all they have to do is call up their pharmacy and drive over and pick it up.")
"So there are a lot of medical and social barriers that make asthma a hard disease to take care of," he says, "even if you have a good attitude. One of the things that Daphne and the community health care workers do is try to help people work the system and figure out how to take care of their disease under the circumstances that they have to live with. You really have to do some tricks of education to get them to change their behaviors and to understand that changing behaviors is important. But once they've been through a few months of doing this, and they understand that they haven't had to go to the emergency room, and they haven't gotten up in the middle of the night, and they haven't gotten sick, it does sort of sink in. And it's easy to keep it going. But getting there is very time-consuming."
Word about the Oliver Community School-Based Asthma Program seems to be spreading. In fact, so many people have called to find out about the effort that Eggleston decided to organize a one-day seminar titled "Confronting Asthma Where It Lives." Slated for April 10, the conference is designed for school and community nurses, managed-care providers, educators, public health administrators, and community leaders. Eggleston hopes the seminar will lead to the establishment of similar school-based asthma programs around the country.
Meanwhile, the program will expand to four more Baltimore elementary schools next year, and Eggleston has dreams of seeing it used throughout the entire school system in the coming years. Administrators have resisted the idea, mainly because of worries about how to pay for such a large-scale effort. But skeptics would be advised to talk to Alma Brown, the principal of Harris Elementary. "You begin to wonder how you managed before the program," she says. "And you really see the value of it. You know, some things come and go, and they're kind of faddish. This is not. It addresses a critical need."