Your Questions Answered: School Disclosure and Privacy Protections

Written by Jen Sloniger
Your Questions Answered is a blog series which addresses Project HOPEFUL blog readers’ most burning questions. Send your questions to:

Today we feature related questions from two of our readers :

QUESTION 1:What are the legal implications of sending your children affected by HIV to school? Do you have to offer this information publicly?

QUESTION 2: How do you handle negative and/or hysterical reactions [at school]?
~ Valerie

I’ll Address Andie’s question first because the answer takes a little more time.

Andie, According to a 1993 CDC article1, “no cases of HIV transmission in school have been reported, and current epidemiologic data do not justify excluding children with HIV infection from school or isolating them in school to protect others. Children with HIV infection should be able to participate in all school activities with the same considerations as other children, to the extent that their health permits.”

According to the same CDC article, “despite the large number of persons participating in contact sports, only one case of HIV transmission attributed to sports had been reported worldwide.”

That was in 1993. I hunted all over for any updated numbers but couldn’t find any.

Do you wanna know why I think that was? Because there AREN’T ANY.

Today, the ability for patients to receive HAART makes it extremely likely that those numbers haven’t changed since 1993 . So, if there was only ONE sport related case of transmission WORLDWIDE in 1993, and NO cases of transmission in school, it is safe to say there is no reason for parents to be concerned about transmission in school or during sports activities these days.

As Dr. Steven J. Anderson, Chair of the Academy of Pediatrics Committee on Sports Medicine, and team doctor for the U.S. Olympic Diving Team puts it:

“There is clearly no basis for excluding any student from sports if they are infected. — I personally feel parents have no obligation to disclose the infectious status of their children to anyone.”

The US government feels the same way too.

An HIV+ person’s health information, whether they be a man, woman, or child, is protected information under United States law. There are also laws in place to protect citizens with HIV/AIDS from discrimination.

I’ll explain these laws briefly:

Section 504 the Rehabilitation Act of 1973
Section 504 prohibits discrimination against persons with handicaps in federally assisted programs such as elementary and secondary schools. It provides that: No otherwise qualified individual with handicaps in the United States … shall, solely by reason of his or her handicap, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.

The law of which Section 504 is a part of defines a handicapped person as one who has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is perceived as having such an impairment.

Persons with HIV/AIDS are substantially limited in a major life activity due to the reaction of others to their perceived contagiousness. The fear of HIV/AIDS includes a perception that a person with the disease is substantially impaired in his/her ability to interact with others, for example, to attend school. Persons, such as those with HI/AIDS, who are “regarded” as impaired, are just as “handicapped” under the law as those who possess the physical limitations that arise from actual impairment. Discrimination based solely on the fear of contagion is discrimination based on handicap when the impairment has that effect on others.2

Title II of the American With Disabilities Act (ADA)
The Title II of the ADA prohibits discrimination by state and local government entities, even if they don’t get Federal funding. Examples of entities that may be covered by Section 504 and the ADA include hospitals, clinics, social services agencies, drug treatment centers, and nursing homes. Again, under these laws, discrimination means that you are not allowed to participate in a service that is offered to others, or you are denied a benefit, because of your HIV disease..3

In the first Supreme Court case involving HIV/AIDS discrimination (Bragdon v. Abbot), the Court ruled that Congress intended HIV infection to be included as a disability under the ADA. HIV infection has been found to meet the definition of disability under Federal and state laws protecting the disabled from all forms of discrimination.4

The Health Insurance Portability and Accountability Act of 1996 (HIPAA)
HIPAA is designed to protect the privacy of patients’ medical records and other health information. It also provides patients with access to their medical records and with significant control over how their personal health information is used and disclosed. HIPAA has proven to be very effective in preventing discrimination against people living with HIV/AIDS by preventing others from knowing their HIV status.

Together these laws provide strong protections for children with HIV. Families are under no obligation to disclose their child’s HIV+ status to schools, coaches, or anyone. (except medical providers who care for them.)

Now to answer your question, Valerie:

Any one who shares personal medical information about an individual without being authorized to do so is subject to punishment according to US law.

Local county health departments will notify a school if a student in their population is HIV+ but they will not disclose the identity of that student. That’s because there is no need. Law abiding schools practice Universal Precautions FOR EVERYONE in attendance. A school’s operations should not be affected one way or another by the presence of an HIV+ individual in their student population.

Some types of negative reactions toward a child who discloses their HIV+ status by school staff, students, or their parents could be considered a form of harassment and/or discrimination, which is against the law.

People with HIV/AIDS who believe that their health information privacy rights have been violated may be eligible to file a complaint. For information about your privacy protections, see the US Department of Health and Human Services  HERE.

1. CDC: 2. US Department of Education:
3. 4.

4 responses to “Your Questions Answered: School Disclosure and Privacy Protections

  1. I informed our daycare provider (babysits out of her home) that we may adopt an HIV+ child. She asked her DCFS caseworker if she could babysit an HIV+ child and the caseworker told her that she can but she would have to let the other parents know. Is that right? Under law am even required to tell the babysitter? Thanks!!

  2. Whitney, The DCFS worker is clearly ignorant of the privacy laws in place for HIV+ children. You are NOT required to tell anyone because it is protected health information. Only health care providers and sexual partners need to know a persons HIV+ status. Your child would NOT be a health risk to any child in the daycare. This daycare wouldn’t be approved by the government if she did not know and practice Universal Precautions and therefore having a positive child in her care should have no bearing on her daily operations.

  3. That’s what I thought! Thanks!

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