Educators in this struggling city have long faced the challenges of students affected by poverty and the deterioration of urban areas. Now, both students and educators in this city face a new and deadly social problem: AIDS. With one of the highest rates of pediatric AIDS per capita in the country, school officials are collaborating with medical professionals and community organizations to offer services to the youngest victims of the AIDS epidemic.
"I believe we have a difficult and significant task ahead of us," shared Jeffrey H. Spector, the district’s coordinator of AIDS services.
For Newark, a city plagued by poverty, violence, and drug abuse for many years, acquired immune deficiency syndrome has become another factor that affects the city’s large underprivileged population. Unlike other areas heavily impacted by AIDS, such as New York City and San Francisco, Newark’s AIDS crisis has primarily been driven by intravenous drug use and heterosexual activity, according to medical experts. As a result, women and their babies in Newark have been more susceptible to contracting the human immunodeficiency virus (HIV) that leads to AIDS compared to other areas.
Since the crisis began in the early 1980s, schools across the country have grappled with issues of confidentiality and whether to allow HIV-infected children and those with active AIDS to attend classes. However, until recent years, educators did not have to dedicate much effort to providing services to these students since most of them passed away shortly after diagnosis. Nevertheless, there is increasing evidence that AIDS patients, including babies infected by their mothers, are living longer and healthier lives. Advances in treatment, including the use of the prescription drug A.Z.T., have allowed these children to spend more time in school.
Therefore, school nurses in Newark have received training from a local children’s hospital to identify AIDS symptoms, and they have started administering A.Z.T. daily to children who require the drug. Although educators here do not have precise figures on the number of HIV-positive children enrolled in their schools, they expect an increase in the coming years. Consequently, they believe it is essential to convince parents and the community that these children have a chronic disease, not a stigmatizing one.
"Children with AIDS should be treated like any other children, as long as they are capable," stated Fern Richardson, the principal of Boylan Street School, where many of the district’s chronically ill students attend.
Data from the U.S. Centers for Disease Control and the New Jersey Department of Health reveal that babies and young children in Newark are disproportionately likely to test positive for exposure to HIV or develop AIDS. As of October 1990, there were 2,521 children under the age of 13 nationwide with AIDS, and Newark had the third highest number of confirmed pediatric AIDS cases after New York and Miami, despite being a smaller city. Medical experts believe these numbers only represent a small fraction of potential pediatric AIDS cases, as many more children may have been infected with the virus without experiencing symptoms.
Carlton Duncan, a public health advisor at the CDC, emphasized that Newark is at the epicenter of the AIDS problem, with societal factors such as drug addiction and prostitution contributing to the spread of the virus.
Since newborn babies primarily acquire antibodies from their mothers, the HIV test serves as a better indicator of the mother’s HIV status rather than the child’s, according to state officials. However, between 30% and 40% of babies who test positive will remain positive and eventually develop AIDS.
Sam Costa, director of the state’s AIDS data-analysis unit, reported that as of late last year, 75 children under the age of 13 in Newark had been diagnosed with AIDS, and 42 were still alive. Most infants born HIV-positive are not diagnosed until they are 14 months old, and half of the infected children live at least 4.5 years.
Given that the majority of pediatric AIDS patients in the city come from low-income and minority backgrounds, those who survive until age 4 or 5 are likely to attend schools situated near low-income housing projects, such as the 18th Avenue Elementary School. In the school nurse’s office, Eloise Lee-Smith, the school nurse, and Rhonda Bland-Carter, a visiting nurse, explained how they have taken on much of the responsibility for providing school-based services to HIV-positive children.
During a recent workshop on AIDS for elementary-school guidance counselors in the district, several counselors shared stories about children and families who have been greatly affected by the disease. Sharon Berry, a counselor who works at two schools, recounted one particular case where a child’s mother was involved with drugs before contracting AIDS. It was a difficult situation for the child who felt somewhat embarrassed about his mother’s condition.
School systems in other areas are also taking steps to provide medical and psychological support for children from families impacted by AIDS. For example, in New York City, guidance counselors have received specialized training on counseling children about death, dying, and grief. Some schools have even created bereavement groups for students who have family members with AIDS.
The district’s director of AIDS education, Gerri Abelson, mentioned that they are also considering whether and how to administer A.Z.T. and other medications for illnesses within regular school settings.
In Dade County, Florida, teachers who have students with AIDS receive additional training. They also have the opportunity to attend support meetings with other teachers who work with these children. During these sessions, teachers receive grief counseling, stay updated on pediatric AIDS research, and discuss the medical care of the students.
Contrary to common belief, these teachers form strong connections with the children they teach, according to Nadine Gray, the district’s AIDS-education supervisor. Over the past ten years, nearly 20 students in the district have disclosed their HIV-positive status.
In Los Angeles, school officials collaborate closely with local healthcare providers to ensure that children with AIDS receive the necessary educational and medical services. Helen M. Hale, the district’s director of student medical services, emphasized that students are provided with personalized services.
A similar spirit of cooperation between education and medical officials can be found in Newark. The local pediatric patients primarily receive their medical care at the Children’s Hospital of New Jersey, where several social workers act as case managers for parents seeking educational services for their HIV-positive children.
Heidi J. Haiken, the coordinator of social work services for the Children’s Hospital AIDS Program (CHAP), stated that parents and hospital staff discuss the advantages and disadvantages of informing school officials about the child’s health status. If the school is aware of the child’s condition, they can work closely with the hospital in case the child becomes ill during class. However, some parents still fear discrimination and choose not to disclose their child’s condition.
The social workers also assist parents in obtaining any necessary special-education placement for their infected children. In 1989, out of the 40 HIV-positive children enrolled in the CHAP program, 34 were attending school – 21 in regular classrooms and 13 in special-education classes. The remaining six were either too sick to receive instruction, required home instruction, or left school at 18 years old.
Gretchen MacBryde, the director of the program, expressed that the well-being of children from families impacted by AIDS is often disregarded. She emphasized the importance of reassuring them that they are not to blame for their situation. Neglecting the siblings in such families can lead to negative emotions like jealousy and envy, but it is completely unacceptable to express those feelings towards their parents. The Family Place, which receives funding from the state, CHAP, and various other organizations dedicated to aiding children with AIDS, provides psychological support to HIV-positive children. Ms. MacBryde highlighted the significance of equipping them with the necessary tools to confront their fears. She emphasized that these children need hope to believe in their ability to overcome their challenges.
