For years, educators in this troubled city have dealt with students suffering the effects of poverty and urban decay. Now both students and educators here have a deadly new social ill to contend with: AIDS.
Faced with one of the highest per-capita rates of pediatric AIDS in the nation, school officials here are working together with medical professionals and other community organizations to provide services to the youngest victims of the AIDS epidemic.
“I think we have a hell of a task ahead of us,” said Jeffrey H. Spector, the district’s coordinator of AIDS services.
For Newark, a city long plagued by high rates of poverty, violence, and drug use, acquired immune deficiency syndrome has become yet another factor that is disabling the city’s large underclass.
Unlike most areas that have been hard hit by AIDS, such as New York City and San Francisco, Newark’s AIDS crisis has always been propelled chiefly by intravenous drug use and heterosexual activity, medical experts say. As a result, women and their babies here have been far more likely than those elsewhere to contract the human immunodeficiency virus that causes AIDS.
Since the crisis began in the early 1980’s, schools nationwide have struggled with issues of confidentiality and whether to bar H.I.V.-infected children and those with the active disease from classrooms. But until the past few years, educators did not have to devote much effort to providing services to such students, since most died shortly after being diagnosed.
But there is mounting evidence that AIDS patients, including babies infected perinatally by their mothers, are living longer and healthier lives. And advances in treatment, including the use of the prescription drug A.Z.T., have helped these children spend more time in school.
Thus, Newark’s school nurses have received training from a local children’s hospital in how to identify the symptoms of AIDS and have begun to administer A.Z.T. daily to children who are taking the drug.
Although educators here say they do not know how many children with the virus are enrolled in their schools, they expect more to be attending for longer periods of time in the coming years. As a result, they say, parents and the community must be convinced that these children have a chronic, rather than a stigmatizing, disease.
“Children with AIDS should be treated like other children, as long as they can be,” said Fern Richardson, principal of the Boylan Street School, where many of the district’s chronically ill students attend classes.
Data collected by the U.S. Centers for Disease Control and the New Jersey Department of Health indicate that babies and young children in Newark are disproportionately likely to test positive for exposure to H.I.V. or to develop AIDS.
Through October 1990, there were 2,521 children under age 13 nationwide who had AIDS, according to the CDC Newark, with 124 confirmed cases of pediatric AIDS, had the third largest caseload in the nation after New York and Miami, both much larger cities. Medical experts believe that these numbers represent only a small fraction of all potential pediatric-AIDS cases, since many more children may have been infected with the virus but be free of symptoms.
Carlton Duncan, a public-health adviser at the CDC, said that New ark “is right in the epicenter” of the AIDS problem.
“You have people trading sex for drugs, crack cocaine,” he said. “There are a lot of societal factors contributing to this.”
Since the antibodies that are measured in a newborn come mostly from the mother, the test is really a better indicator of the mother’s H.I.V. status than the child’s, state officials said. Nonetheless, they noted, between 30 percent and 40 percent of these H.I.V.-positive babies will remain positive and will eventually develop AIDS.
Sam Costa, director of the state’s AIDS data-analysis unit, said that as of late last year, 75 children in Newark under the age of 13 had been diagnosed with AIDS, and that 42 were still living.
Most infants born H.I.V. positive are not diagnosed until they are 14 months old, he said, and half of the children born infected live at least 4.5 years.
Since the vast majority of the city’s pediatric-AIDS patients are poor and are members of minority groups, those who do live until at least age 4 or 5 would likely attend a school such as the 18th Avenue Elementary School, located adjacent to a low-rise, low-income housing project.
Sitting in the nurse’s office, Eloise Lee-Smith, the school’s nurse, and Rhonda Bland-Carter, a visiting nurse, explained to a visitor how school nurses have borne much of the brunt of providing school-based services to H.I.V.-positive children.
Under the district’s regulations, the parents of children who are H.I.V. positive are encouraged, although not required, to tell the principal and the school nurse about the pupils’ health condition, the nurses said.
Ms. Lee-Smith said that maintaining confidentiality can sometimes be difficult when a child is supposed to receive a midday dose of A.Z.T., which is administered in liquid or pill form every six hours. Since the district requires the nurses to keep all prescription drugs in their original containers with their original labels, she said, school employees are careful to keep hid den any bottle labeled “A.Z.T.”
In one case, she said, an H.I.V.-positive child at another school sometimes skipped going to the nurse’s office for his daily dose of A.Z.T. because he did not like its taste. The nurse at that school could do little to improve the boy’s compliance with the drug regimen, she said, because his family would not tell his teacher about his health status. Unable to tell the teacher herself, the nurse was having a difficult time stressing to the teacher the importance of the boy’s receiving his medication daily. “It’s kind of cumbersome,” Ms. Lee-Smith said.
Since nurses have no way of knowing which, and how many, of their students have AIDS, they must use rubber gloves and take other precautions to avoid contact with body fluids when working with all students, said Ms. Bland-Carter.
“I think if nurses actually knew how many children here have AIDS, they would be overwhelmed,” she said.
School counselors are also trying to cope with students who come from families that have been affected by the disease.
At a recent workshop on AIDS for the district’s elementary-school guidance counselors, several said they knew of children and families that had been hard hit by the disease. “When I first started working with the child, his mother was involved with drugs,” Sharon Berry, a counselor who divides her time be tween two schools, recalled of one such case. “Then it became AIDS.” “It was a real trauma for the child,” she said. “He was a little embarrassed about his mother having AIDS.”
School systems elsewhere are also working to provide medical and psychological services for children who come from families that have been affected by AIDS. For example:
In New York City, guidance counselors have received special instruction on counseling about death, dying, and grieving. Some schools have established bereavement groups for students whose family members have AIDS.
Gerri Abelson, the system’s director of AIDS education, said the district is also deciding whether, and how, to administer A.Z.T. and medications for other illnesses in regular-school settings.
In Dade County, Fla., teachers of children who disclose that they have AIDS receive special inservice training. They can also attend monthly support meetings with other teachers who work with these children. At these sessions, the teachers receive grief counseling, learn about research findings in pediatric AIDS, and discuss the children’s medical care.
“Contrary to what most people believe, these teachers are very attached to these children,” said Nadine Gray, the district’s AIDS-education supervisor. Over the past decade, nearly 20 students have told the district that they had AIDS, she said.
In Los Angeles, school officials work closely with local health-care providers to ensure that children with AIDS receive the educational and medical services they need. Helen M. Hale, the district’s director of student medical services, said that students there are provided services on a “one-to-one basis.”
This same spirit of cooperation between education and medical officials exists in Newark. At the Children’s Hospital of New Jersey, where most local pediatric patients get their medical care, several social workers act as case managers for parents seeking educational services for their H.I.V.-positive children.
Heidi J. Haiken, the coordinator of social-work services for the Children’s Hospital AIDS Program, or CHAP, said that parents and the hospital staff discuss the pros and cons of telling school officials about the child’s health status.
If a school knows of the child’s condition, she said, it can work more closely with the hospital should the child become ill in class.
On the other hand, she said, some parents “are still afraid of discrimination.”
The social workers also help parents obtain any needed special-education placements for their infected children. Of 40 H.I.V.-positive children enrolled in the CHAP program in 1989, 34 were attending school: 21 in regular classrooms and 13 in special-education classes. Of the other six, three were too ill to receive any instruction, two needed home instruction, and one left school at age 18, Ms. Haiken said.
If a child needs to stay in the hospital for more than two weeks, whether for AIDS or any other illness, a teacher paid for by the Newark school district provides individualized instruction, Ms. Haiken said.
The hospital program’s staff has also provided special training to Newark’s school nurses about the symptoms and treatment of pediatric AIDS.
Carolyn K. Burr, coordinator of the National Pediatric H.I.V. Resource Center at the hospital, said the symptoms include enlarged lymph nodes, weight loss, respiratory complications, and slower than average growth rates.
Children with AIDS can develop serious complications if they are exposed to such common childhood diseases as chicken pox and measles, she said. If a nurse knows of an outbreak of such a disease at her school, she can advise parents to keep their H.I.V.-infected child home for several days, Ms. Burr said.
Although nurses cannot diagnose the children themselves, they can tell a parent to seek medical attention if they find a suggestive pattern of symptoms, Ms. Burr said. Since many children in the Newark school system lack a regular health-care provider, she said, “if that child is as yet undiagnosed, the school nurse may be the only [medical professional] with regular contact with the child.”
Families of H.I.V.-infected children also need special services, and a church-sponsored program here across the street from the hospital is attempting to meet their psychological and pastoral needs. The Family Place, housed at St. Barnabas Episcopal Church, helps caregivers obtain medical and social services for their sick relatives, offers respite care, and organizes separate support groups for infected and uninfected siblings.
Gretchen MacBryde, the program’s director, said that the healthy children in a family affected by AIDS are often overlooked.
“They need to be reassured that this is not their fault,” she said. “The
siblings may get ignored, [or become] jealous, envious, but it’s totally unacceptable to say that to your parents.”
The Family Place, which is also funded by the state, CHAP, and sever al other groups that provide services to children with AIDS, gives H.I.V.-
positive children the psychological “tools to deal with their fear,” Ms. MacBryde said.
“They need hope that they can time,” she said.
