How do you handle disclosure in school (if your child is in school)? How does the school system handle children who are HIV+? Who do they disclose that information to in order to protect the privacy of the child? What are your required or chosen obligations in informing the school/teachers about your child's HIV status?
Let me start by saying that only two of our six children are in school. That said, all of them are in educational programs at church, so this post will address both school disclosure and church disclosure. In other words, when I talk about teachers, unless I specify otherwise, I'm talking about all kinds of teachers: school (in our case, public school), Sunday school, Sunday evening kids' programming at church, and so on.
First, what are our legal obligations? In school, church, or childcare settings, nothing. Nada. Zilch.
Because HIV is not a risk to other children and because HIV status is protected from discrimination as part of the Americans with Disabilities Act, we are not required to disclose our child's status to anyone in a school, childcare, or church setting. In fact, we're only required to disclose to medical professionals.
(The other category that must be disclose to is sexual partners, but we're not there yet, and I'll be writing an entire post about that later.)
As we knew we'd be moving forward toward an HIV+ adoption but before we found out about our waiting three, one of whom is HIV+, I sat down with our school's principal and school nurse at a meeting I requested. We were trying to decide how much and to whom to disclose, and we wanted to know how they would handle a situation if another parent or if a teacher or other staff member found out about our child's status and was fearful, ignorant, or confrontational about it.
The nurse had talked to the school district's head nurse and some other higher up at the health department. They said - and she agreed - that we should absolutely not disclose to anyone. While we were thankful to add their input to the research and recommendations of other medical professionals and adults with HIV, we obviously haven't followed the specific advice about disclosure offered that day by our school nurse.
That said, I agree with her to a point: If you're not sure about disclosure, then don't disclose. You can always disclose later, but you can't undisclose. Her recommendation was based on a desire to protect our child - who was only hypothetical at that point - from the hurtful stigma and ignorance and rejection that can often be the result of disclosure.
From our principal, who is quite possibly the most supportive and helpful and professional educator I have ever met, I received assurances that our child's confidentiality would be protected and that any concerned parties would be responded to with facts about the school's commitment to both complying with the ADA and using universal precautions (that is, treating every individual as if they could be carrying a blood-borne pathogen and using precautions with any exposure to blood).
Furthermore, she pointed out that she would not legally be allowed to disclose our child's HIV status to anyone else, even if we gave her permission to do so. In the words of the NC Bar Association, North Carolina law makes it a misdemeanor to disclose information about HIV infection. However, there are a few exceptions. First, information about your HIV status can be disclosed with your consent. Also, as discussed above, your doctor has to report your HIV infection to the State. The State can inform your spouse.
So do we disclose in school and church environments?
Yes. Selectively.
Actually, we disclosed long before any conversations took place. A lot of people from our church already read our blog. Some of the teachers and other staff members at our school do too. Since we have shared here that one of our children is HIV+, that means we've already disclosed - in part, at least - in those environments.
More than that, though, we do disclose to teachers now and plan to in the future, at least through third or fourth grade. Given that other children are not at risk of getting HIV from our child in a school or church setting, we are comfortable in changing that decision in the future and not disclosing to every teacher (for example, not going out of our way to tell the music teacher or art teacher, and not informing substitute teachers). As our children get older and more self-sufficient, we may shift to only informing one trusted staff member at the middle school and high school, in case of emergency, and to continuing to inform our youth pastor but maybe not every single teacher/leader. With age, we'll transition more and more about the disclosure decision to our child, as we teach each of our children to advocate for themselves.
Edited to add: To clarify my paragraph above, we don't disclose to the teachers because other kids are at risk. We disclose to them because our child is at risk for discrimination because we've chosen to go public as an HIV-affected family. It is possible that other parents at our school or church might express concerns, and I like for teachers to be knowledgeable if they're ever in that position.
Now, a note for potential adoptive parents: This topic, and many others I'll be addressing, just reflect our own family's decisions. Now that I'm connected to a lot of other adoptive families with HIV+ children, I am realizing more and more that the majority of families are more private about this than we are. You'll find that the loudest voices online are the ones who, like us, have chosen to disclose. Please remember that our voices aren't the only ones - just the most easily accessible ones - and don't worry that you have to be as open as we are if you decide to say yes to adopting a child with HIV. Just as my friends and I represent a variety of decisions on other topics - public schooling/home schooling/private schooling, for example - we also represent a variety of decisions about disclosure.
We've chosen what we've chosen based on our child, our school and church environments, our personalities, and a whole host of other personal decisions. Other families use the same factors to make a completely different decision.
And that's totally okay.
