Education of Children With Human Immunodeficiency Virus Infection

Abstract

This Policy Statement was retired April 2016
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.

Full text

AMERICAN ACADEMY OF PEDIATRICS
Committee on Pediatric AIDS
Education of Children With Human Immunodeficiency Virus Infection
ABSTRACT. Treatment for human immunodeficiency
virus (HIV) infection has enabled more children and
youths to attend school and participate in school activi-
ties. 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 disclo-
sure. Youths also should assent or consent as is appro-
priate for disclosure of their diagnosis.
ABBREVIATIONS. HIV, human immunodeficiency virus; AIDS,
acquired immunodeficiency syndrome; CNS, central nervous sys-
tem; IDEA, Individuals With Disabilities Education Act; IFSP,
Individual Family Service Plan; IEP, Individualized Education
Program; AAP, American Academy of Pediatrics.
A
symptomatic children with human immuno-
deficiency virus (HIV) infection cannot be
distinguished from children without infec-
tion, 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 ap-
propriate education of all school personnel. Partici-
pation in school provides a sense of normalcy for
children and adolescents with HIV infection and of-
fers 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 par-
ticipate in all activities in school
3,4
to the extent that
their health permits, which includes a spectrum of
illness ranging from no symptoms to acquired im-
munodeficiency syndrome (AIDS). The need to ex-
clude 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 consul-
tation with the child’s parent or caregiver.
HIV INFECTION AND DEVELOPMENTAL DELAY
The majority of children with HIV infection reach-
ing 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 cog-
nitive function followed by a decline in academic
performance. Controlled clinical trials of antiretrovi-
ral therapy have shown improved neurodevelop-
mental function in symptomatic children.
9
Clinical
trials have also shown that with different antiretro-
viral 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 educa-
tion 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 ado-
lescents with disabilities including HIV infection.
Several laws have been enacted to improve the avail-
ability 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 Handi-
capped 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 dis-
abilities and health impairments. It includes a provi-
sion 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 per-
sons to be eligible for services under IDEA, their
condition, specified by the law, must have the poten-
tial to interfere with the educational process and
normal school performance and requires special ed-
ucational-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
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.
PEDIATRICS (ISSN 0031 4005). Copyright © 2000 by the American Acad-
emy of Pediatrics.
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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 knowledge-
able 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 occu-
pational therapies.
The Americans With Disabilities Act also provides
children and youths with disabilities certain protec-
tions 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 precau-
tions and in recognition and management of medical
emergencies.
11,12
Students with chronic illnesses, in-
cluding HIV, may need medications administered
during the school day and established school proce-
dures should be used.
13
Confidentiality must be en-
sured. Under optimal circumstances and with paren-
tal consent (and student assent when appropriate),
the person(s) giving medications should be informed
of the student’s diagnosis and the side effects asso-
ciated with the drugs being taken. In the event that
the HIV diagnosis is not disclosed to school person-
nel, 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 bath-
room privileges should occur in response to physi-
cian requests.
HOME INSTRUCTION
Children and youths with symptomatic HIV infec-
tion 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 in-
struction when the disease progresses. The policy on
home instruction published by the American Acad-
emy of Pediatrics (AAP) provides guidelines for ref-
erence, 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 un-
der 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 be-
tween school and other special arrangements, in-
cluding home instruction.
The student’s ability to continue his or her educa-
tion 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 sup-
port. The school may also assist other students to a
better understanding of chronic illness and how to be
supportive of their classmates. Although family dis-
ruption and community rejection occur for students
with HIV infection, they are more common in fami-
lies who may need assistance from school mental
health personnel.
CONFIDENTIALITY
As long as disclosure of HIV infection can stigma-
tize students and families, confidentiality is impor-
tant. 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 pri-
mary 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 disclo-
sure, 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 pro-
gram for school personnel provides accurate infor-
mation 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 recom-
mended by the AAP
2
are designed to be applicable to
HIV-infected children and youth. General immuni-
zation 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 ill-
nesses. 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.
CONCLUSION
Transmission of HIV from mother to child has
been significantly decreased with treatment, result-
ing in fewer HIV-infected children entering pre-
school and kindergarten. The advent of early aggres-
sive 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 under-
standing by school personnel of chronic illness man-
AMERICAN ACADEMY OF PEDIATRICS 1359
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ifestations attributable to HIV infection is essential
for providing appropriate educational programs.
RECOMMENDATIONS
1. All children and youths with HIV infection
should have the same right as those without in-
fection to attend school and receive high-quality
educational services.
2. 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.
3. 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.
4. Continuity of education must be ensured for chil-
dren and adolescents with HIV infection and en-
compasses the spectrum of traditional school,
medical day treatment programs, and home
schooling.
5. 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 stu-
dent.
6. The pediatrician/medical home provider should
maintain appropriate communication with the
school to facilitate the education of children in
their care.
Committee on Pediatric AIDS, 1999 –2000
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
Liaison Representatives
Mary Lou Lindegren, MD
Centers for Disease Control and Prevention
Consultant
Martin W. Sklaire, MD
Staff
Eileen Casey, MS
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DOI: 10.1542/peds.105.6.1358
2000;105;1358Pediatrics
Committee on Pediatric AIDS
Education of Children With Human Immunodeficiency Virus Infection
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