Can a School Demand Medical Information?

I can’t believe that I am even doing a blog post on this topic. But it’s only Tuesday and it has already come up three times in our Facebook group. We’ve had several situations where a school or IEP team member has asked or demanded medical information or access to medical records.

Here’s one scenario: Someone from your child’s school has asked you to sign a release form. It’s a fairly mundane blanket form, but it gives your school the ability to communicate with your child’s medical providers.

a woman is looking through a child's medical records

Sadly, most parents just sign it because they either don’t know what they are signing (don’t really bother to read it) or they feel uncomfortable saying “no.”

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So what should a parent do?

Read all IEP forms that are put in front of you.

I know it can be overwhelming to be a disability parent. We are overwhelmed with forms and paperwork. Still, you have to read everything that is put in front of you. And, if you don’t understand something, ask. The IEP process can be intimidating and not everyone wants to step out of their comfort zone and say “no” or ask for assistance. But, you must. And it gets easier the more often you do it. That’s your starting point.

No, a school cannot demand medical records.

Nowhere in IDEA does it say that this is a part of the IEP process. Nowhere. And as far as I know, no state regs require it either. They cannot withhold IEP services until you sign this form (a common bullying tactic). You can always file a state complaint, one of the many IEP complaint options.

So why do they ask for it? It makes absolutely no sense to me. Schools are always saying “we don’t have time for this, we don’t have time for that….” but now all of a sudden they have time to have IEP teams communicate with doctors’ offices?

Also, I have seen so many times, a parent gets a list of recommendations from a doctor, asks the IEP team to consider it. They balk at the idea. But now they want access? Why?

When we are going through something new with my son, I ask for extra consult appointments. And then I come home, read all I can on the appropriate websites, and usually pose even more questions to my son’s doctors.

My point is: Medical records for many of our kids are incredibly complex and not easy for the layperson to understand. And the IEP team is going to do what?

They don’t need to have this access. Period. Full stop. If you are a parent fully engaged in the IEP process and your child’s case manager so to speak, then they have all the information they need.

A school team does not need a direct line to our doctors.

Well, what’s the harm in sharing medical records?

Probably nothing. But it could be something.

Just last week I was accused by a group member of being paranoid for sharing my experiences. I’m not paranoid. These experiences, thankfully, are not the norm.

But they still happened. And again, I go back to…it could have been avoided because the school district does not need access to your medical team.

But what I have seen with a client- A school district gained access to some information about a student and tried to use it to bully the family into a more restrictive environment. This was based only on the new information from the doctor-not any IEP evaluations or behaviors at school.

Another parent reported that her team did the same. Learned information and used it against them.

Again, doesn’t happen all the time. But it has happened. And they don’t need access.

Do you even know everything that is in your child’s medical records?

Well, do you? Is there a phrase in there like “Mom reports that she also has a history of this condition.” Could they possibly learn something about you, your spouse, or the siblings, by accessing these records?

When is the last time you reviewed your child’s medical records? I read what is put online, but my guess is that there are other doctor’s notes that I don’t see. Definitely food for thought!

Is there ever a time to allow the team to communicate with our doctors?

Certain items will be required. But the information can always be provided with a letter or email or by having the office fill out a form. In my experience, doctors’ offices do this all the time and often have form letters ready to give to you. 

Examples may be a form for your doctor to fill out for a health plan, a form for the Ophthalmologist or Audiologist to document vision or hearing loss, a seizure action plan, etc.

Ugh, I already signed one. What should I do?

No worries. Just contact your doctor’s office. Provide them with a formal letter saying that they MUST have written permission from you before releasing any information to anyone or any agency.

More thoughts from parents on this issue:

As always, the Facebook group is very opinionated on this topic. Some random thoughts:

  • In my case, they can use it against you later on. They use the excuse that my son’s medical appointments are the reason he behaves the way he currently behaves.
  • Most of the staff will act like you grew two heads when you decline to sign their form. They are used to many parents just complying.
  • Allowing them to discuss my son’s medical care and condition without me around doesn’t make me comfortable at all. If they need to discuss something with my son’s doctor I’d be happy to facilitate but I ALWAYS want to be part of it. I wouldn’t sign.
  • You are absolutely entitled to act as the liaison to provide them whatever medical information they feel they need- ask for their questions in writing and tell them you will consult with the MD’s and provide them the answers.
  • Nope. I signed a very long time ago before I knew better and next thing I know the school is trying to get copies of blood work from when my daughter was 2. She was 9 at the time! Thankfully my kid’s pediatrician called to let me know what they were doing.

So there you go. My 2 cents’ worth and then some.

And if they retaliate: How to file an OCR complaint and other IEP complaint options.

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