Education of Children With Human Immunodeficiency Virus Infection
- Committee on Pediatric AIDS
Treatment for human immunodeficiency virus (HIV) infection has enabled more children and youths to attend school and participate in school activities. Children and youths with HIV infection should receive the same education as those with other chronic illnesses. They may require special services, including home instruction, to provide continuity of education. Confidentiality about HIV infection status should be maintained with parental consent required for disclosure. Youths also should assent or consent as is appropriate for disclosure of their diagnosis.
Asymptomatic children with human immunodeficiency virus (HIV) infection cannot be distinguished from children without infection, and their educational opportunities should be the same as other children. Children and youths with HIV infection should not be excluded from school or isolated within the school setting.1 The spread of HIV infection in school has not been documented, and fear of its communicability must be allayed by appropriate education of all school personnel. Participation in school provides a sense of normalcy for children and adolescents with HIV infection and offers opportunities for socialization that are important to their development. School attendance promotes a sense of belonging and reduces feelings of isolation and rejection.2 Those with HIV infection should participate in all activities in school3,,4 to the extent that their health permits, which includes a spectrum of illness ranging from no symptoms to acquired immunodeficiency syndrome (AIDS). The need to exclude children or youths with HIV infection from school to protect their own health is unusual. Such a decision should be made by the physician in consultation with the child's parent or caregiver.
HIV INFECTION AND DEVELOPMENTAL DELAY
The majority of children with HIV infection reaching school age have normal cognitive function.5–8 When symptoms develop in a child or adolescent with HIV infection, central nervous system (CNS) dysfunction can occur and cause a decrease in cognitive function followed by a decline in academic performance. Controlled clinical trials of antiretroviral therapy have shown improved neurodevelopmental function in symptomatic children.9 Clinical trials have also shown that with different antiretroviral therapy, CNS disease occurs at different rates, indicating that optimal therapy can delay or prevent CNS dysfunction.9 The pediatrician should ensure that initiation of developmental testing, evaluation of CNS function, and appropriate referral of children and youths to early intervention and special education programs are the same as for children and youths with other chronic illness that can require such services. Physical education programs suitable for the needs of the developmentally disabled or chronically ill child, including those with HIV, should be available.
FEDERAL DISABILITIES RIGHTS LAWS
Important protections exist for children and adolescents with disabilities including HIV infection. Several laws have been enacted to improve the availability of services in schools to assist children with special health care needs to benefit optimally from education.10 The pediatrician should be familiar with federal disabilities rights laws.
The Individuals With Disabilities Education Act (IDEA), as reauthorized in 1997, is an outgrowth of the Education of All Handicapped Children Act of 1975 (PL 94-142) and the Education of the Handicapped Act Amendments of 1986 (PL 99-457). IDEA is a federal program that applies to children and youths, ages 3 to 21 years, with developmental disabilities and health impairments. It includes a provision to encourage states to expand opportunities for children younger than 3 years who would be at risk of having substantial developmental delay if they did not receive early intervention services. IDEA guarantees access to needed educational services and provides for related services that may be required to assist a child with a disability to benefit from special education. Related services include transportation, speech pathology, audiology, counseling, physical therapy, and medical services for diagnosis. For persons to be eligible for services under IDEA, their condition, specified by the law, must have the potential to interfere with the educational process and normal school performance and requires special educational-related services.
For infants and toddlers birth to age 3 years with disabilities, an annual Individual Family Service Plan (IFSP), which is a component of IDEA, is developed to provide early intervention services. For children and youths 3 to 21 years of age who require special assistance, schools must prepare an Individualized Education Program (IEP) and update it annually. The IEP sets out a plan for special education and related services to meet the child's education goals. The plan is designed by a multidisciplinary team that includes the student's parent(s), regular education teacher, special education teacher, a representative of the school administration, and, when appropriate, the student. Ideally, the IEP team may include the pediatrician and school nurse who are knowledgeable about the student's condition.
Section 504 of the Rehabilitation Act of 1973 is available for any children or adolescents with special health care needs and is applicable to those who do not require special education instruction. It provides the legal support for education in regular classes with the use of supplementary services including medical, nursing, psychological, physical, and occupational therapies.
The Americans With Disabilities Act also provides children and youths with disabilities certain protections by ensuring that schools and school programs are available and accessible. For example, this act mandates wheelchair-accessible buildings.
HIV MANAGEMENT IN THE SCHOOL SETTING
School personnel must be educated about HIV disease and the potential long-term needs of the infected student. All schools should have programs for educating school personnel in standard precautions and in recognition and management of medical emergencies.11,,12 Students with chronic illnesses, including HIV, may need medications administered during the school day and established school procedures should be used.13Confidentiality must be ensured. Under optimal circumstances and with parental consent (and student assent when appropriate), the person(s) giving medications should be informed of the student's diagnosis and the side effects associated with the drugs being taken. In the event that the HIV diagnosis is not disclosed to school personnel, only the person(s) directly involved with the provision of medication should be informed of the student's need for medication. Some medications have special requirements, such as increased fluid requirements. Appropriate access to fluid and bathroom privileges should occur in response to physician requests.
Children and youths with symptomatic HIV infection or other chronic illnesses may be absent from school and need home instruction sporadically until the illness improves, or may require other special school arrangements including permanent home instruction when the disease progresses. The policy on home instruction published by the American Academy of Pediatrics (AAP) provides guidelines for reference, and schools must meet the requirements and Section 504 of the Rehabilitation Act of 1973, the Americans With Disabilities Act of 1990, and IDEA.14 Home instruction should be provided promptly under IDEA guidelines through the special education coordinator working with the school medical advisor and the student's physician. The student's physician should help parents to facilitate the transition between school and other special arrangements, including home instruction.
The student's ability to continue his or her education may diminish as disease progresses, and anger, withdrawal, or depression can be present. The school should continue to work with the medical system to assist the family with counseling and emotional support. The school may also assist other students to a better understanding of chronic illness and how to be supportive of their classmates. Although family disruption and community rejection occur for students with HIV infection, they are more common in families who may need assistance from school mental health personnel.
As long as disclosure of HIV infection can stigmatize students and families, confidentiality is important. The need to safeguard the rights of the student must be balanced with information essential to the school to educate the students and faculty. The primary responsibility of the pediatrician is to care for the child or youth and the family. Disclosure of the child's HIV status should be done only with the consent of the parents and age-appropriate assent of the student. Some families may not permit disclosure, which should not prohibit the student from attending school. Also, some HIV-infected children who attend school have not had their conditions diagnosed. An effective HIV/AIDS education program for school personnel provides accurate information about HIV infection and its transmission. This education should provide reassurance to school personnel and a more accepting environment for the HIV-infected student.11
EXPOSURE TO ILLNESS
Specific immunization requirements as recommended by the AAP2 are designed to be applicable to HIV-infected children and youth. General immunization requirements for healthy children are also available in the 1997 Red Book. These immunization requirements are designed to protect all children and adolescents and should be rigorously enforced to reduce risk of exposure to vaccine-preventable illnesses. Parents should be informed when measles or varicella is occurring in the school setting.1 Parents of children and youths at increased risk of developing severe illnesses should consult their physician.
Transmission of HIV from mother to child has been significantly decreased with treatment, resulting in fewer HIV-infected children entering preschool and kindergarten. The advent of early aggressive antiretroviral therapy has prolonged the number of years that children can attend school,15 enabling many to continue their education through high school and perhaps higher education. An understanding by school personnel of chronic illness manifestations attributable to HIV infection is essential for providing appropriate educational programs.
All children and youths with HIV infection should have the same right as those without infection to attend school and receive high-quality educational services.
Children and youths with HIV infection should have access to special education and other related services in accord with their needs as the disease progresses.
Mechanisms for administration of medications, including confidential methods for HIV infection, should be in place in all schools. This includes appropriate facilitation of specific needs for fluids or bathroom privileges.
Continuity of education must be ensured for children and adolescents with HIV infection and encompasses the spectrum of traditional school, medical day treatment programs, and home schooling.
Confidentiality of HIV infection status should be respected and maintained, with disclosure given only with the consent of the parent(s) or legal guardian(s) and age-appropriate assent of the student.
The pediatrician/medical home provider should maintain appropriate communication with the school to facilitate the education of children in their care.
Catherine M. Wilfert, MD, Chairperson
Mark W. Kline, MD, Chairperson-elect
Donna Futterman, MD
Peter L. Havens, MD
Susan King, MD
Lynne M. Mofenson, MD
Gwendolyn B. Scott, MD
Diane W. Wara, MD
Patricia N. Whitley-Williams, MD
Committee on Pediatric AIDS, 1999–2000
Mary Lou Lindegren, MD
Centers for Disease Control and Prevention
Martin W. Sklaire, MD
Eileen Casey, MS
The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
- HIV =
- human immunodeficiency virus •
- AIDS =
- acquired immunodeficiency syndrome •
- CNS =
- central nervous system •
- IDEA =
- Individuals With Disabilities Education Act •
- IFSP =
- Individual Family Service Plan •
- IEP =
- Individualized Education Program •
- AAP =
- American Academy of Pediatrics
- Copyright © 2000 American Academy of Pediatrics