Does Medication Have To Be Disclosed to Your School or Added to an IEP?

Parents of children with special needs often ask whether they need to tell their child's school what medications he is taking. This article answers that question, and I have included helpful links at the bottom for further reading.

Making the decision whether to medicate your child

The decision to medicate or not medicate a child is a personal one, or a parental one. I would recommend that you always maximize a child’s input in this discussion, even though many children often do not see the big picture or have this decision-making ability. They at least need to be heard. The decision to medicate a child is NOT an IEP team decision. Nor should a teacher or IEP team member ever suggest medicating a child. Keep in mind, someone’s obnoxious statements on medicating your child are not exclusive to being an IEP team member. I have complete strangers approach me in public to make all kinds of suggestions, knowing NOTHING about our situation. I think it’s just in some people’s nature to want to try to be helpful, when they are not helping.

My response to these “helpful” suggestions varies depending on my mood. I can be short and polite “Thanks, but I’ll stick to letting his team of physicians choose what we do” to snarky “Oh, I had no idea you’re a neurologist, congrats!” So navigate these conversations as you think appropriate. Keep in mind, it is not against the law or in violation of anything (except maybe your school district’s policy) to ask about medication. They can ask all day long without breaking the law.

However, a school cannot demand or require that you medicate your child. Nor can they withhold an IEP if your child is “better” on medication. The law is very clear about both of those issues, I’ve provided links below from Wrightslaw.

Do you have to tell the school about medications?

Short answer, no. You don’t have to. There are no medicine police, and no one from ATF or FDA is going to come hunt you down.

“Great!” said moms everywhere. “Then I won’t tell them!”

Well, let’s hold on a minute. Why don’t you want to tell them?

  • not their business
  • worried about the stigma
  • He doesn’t take it at school, so why should I?
  • don’t want people to think I’m a bad mom
  • fear they will try to take away services
  • fear they will try to change his placement or IEP based on this new knowledge
  • fear they will “hold it against me” (or the child)
  • fear they won’t keep this information private

And you know what? Those are all very good reasons. But here’s some other food for thought.

Reasons to tell your child’s school about medications

  • If there is an accident, EMS personnel may need to administer emergency meds, so they need to know what meds your child takes.
  • You don't want your child to be punished for side effects such as frequent toileting, increased thirst, drowisness.
  • If your child gets into something or eats something, what if it reacts with the meds? (Some meds react with foods as simple as grapefruit or kale!)
  • What if it’s a blood thinner?
  • What if it’s a new med and your child starts to experience side effects?

In a perfect world, parents and all school personnel would have continuous open dialogue, without judgment or reservation, designed only to better the child’s school experience. However, those of us in special needs land know that our world is far from perfect. Every day, school personnel do demand that parents medicate children, they do hold it against you and I recently heard a story where a mom had CPS called on her. Since she misunderstood the prescription instructions, CPS deemed there was a justifiable case for investigation against her for improperly medicating her child! And it all originated with the school calling CPS. (And that’s retaliation, I’ve covered it before).

So what can you do? You do have the safety concerns, and think that the school should know. But, you also have all those other concerns.

Tell the nurse.

Yes, it’s that simple. You can tell the nurse so that he/she is aware and it’s in your child's file for an emergency. You can also ask the nurse to sign a confidentiality agreement/release form that she is only authorized to release that information in case of an emergency (and define emergency!). Keep in mind, your child’s medical records, as far as what the school nurse has, are not covered by HIPAA but rather by FERPA. Many days FERPA isn’t worth the paper it is written on, but there are some things you can do if the nurse violates your child’s privacy. Check with your state’s licensing board and practice act to see if there is a clause about privacy and confidentiality and if you can prove it was violated. File a complaint. Yes, this is a dramatic response and should only be done in worst case scenarios. I’m telling you just so that you know you have options.

Medication and the IEP

Medication really has no role in the IEP process, other than as an accommodation (such as a water bottle at their desk or unlimited bathroom trips). It certainly has no place on the front page of the IEP, so if it’s there, remove it!

And, if any of those other issues come up, like your child is discriminated against, they try to withhold services or remove the IEP, you fight like hell, knowing that the law is on your side. Find an advocate, or join our Facebook group for assistance.

My personal opinion and situation: My son is on many medications for seizures, and if you know anything about seizure management, meds are always being adjusted and changed. So yes, his teacher and school nurse know. The nurse knows which ones, and she helps me with day-to-day stuff. The teacher merely knows he is on meds. I assume she doesn’t bother memorizing which ones since they always call the nurse if there is an incident. And I always inform the nurse and the teacher when we are doing med changes.

But I thought of a different scenario this morning. My son is non-verbal. He’s been attending speech therapy for 10 years and still doesn’t talk. For argument’s sake, let’s say that is his only disability. In every other way, he is normal. If there was a pill that was proven to work and proven safe with limited side effects that would enable him to talk, I would start it today. And let’s say every time I forgot to give him a pill, or we ran out…boom, back to no talking. I would still give it and try my hardest to not forget. And I would rip up that speech IEP and never look back.

But that’s not a choice everyone would make. Some kids do really well on meds and need little to no assistance. Still, parents want them to be able to cope and adapt for when they are not on meds. Like I said, it’s a personal and parenting choice.

Medication Management

Medication management is a life skill. A child/young adult must be able to manage their own medications if they are ever going to live independently. Make sure it is added to your child’s transition plan if she needs it.

Lisa Lightner is a Chester County, PA mom of two. This post was adapted from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.

Categories: MomSpeak