504 Plans And The Insanity of Some People

AppleBack in the olden days, there were no 504 plans. (Feel free to cue the Scott Joplin ragtime music player piano and take your hat off while you’re inside the establishment, please. There are ladies present.) After my diagnosis in 1983, I skipped through the hallways of my school with a backpack full of syringes and needles and lancets, insulin bottles jingling melodically at the bottom of my bag. I wrote each of my teachers a letter about diabetes and what the symptoms of hypoglycemia were, handing them the letter and a roll of LifeSavers™ to keep in their desks.

Halcyon days, I tell you.

No one cared that I checked my blood sugar in class. I drew up my insulin in the bathroom and shot it wherever I felt like. The school nurse? Ha. My mother reminded me the other day that I knew more about diabetes and didn’t trust the school nurse to blow my nose, never mind participate my diabetes management. High school was much the same, but by that time, I didn’t bother with the cute little letter and the LifeSavers™. To be truthful, I didn’t bother much with my diabetes either. Reflecting back, I can say with certainty that the majority of my exams were taken with the haze of hyperglycemia clouding my brain. But when I did check my blood sugar and take insulin, no one batted an eye.

It’s nothing like that now, from what my friends tell me. Children with diabetes are encountering, in the mildest form, resistance to help with diabetes management. At its worst, blatant refusal and lawsuits filed to keep children with T1 in schools, even with a 504 plan in place.

What’s a 504 plan?

According to the American Diabetes Association, it’s this:

The 504 Plan sets out an agreement to make sure the student with diabetes has the same access to education as other children. It is a tool that can be used to make sure that the student, the parents/guardians, and school personnel understand their responsibilities and work through challenges or misunderstandings to avoid problems in the future. 

It’s not a wish list of things that the parents want the school to do (“Keep my child’s blood sugar between 80 and 140 throughout the day.” Uh, no.). It’s not unreasonable requests (“Provide a nurse to sit in the back of the classroom to monitor my child.”). It’s an agreement stating that the school will do, what the parent will do, and what the child will do. 504 plans can include:

  • Understanding hypoglycemia and hyperglycemia and taking appropriate steps under the child’s diabetes management plan to mitigate risks.
  • Permitting the child to test blood sugars and administer insulin – and if the child is too young, training a school professional to administer and test for them.
  • Making reasonable adjustments when the child’s blood sugar is high or low when completing academic assignments in class, such as tests. (This might include scheduling to take a test at a later time when the child’s blood sugar has returned to range.)

None of this sounds crazy to me. What do you think? 504 plans are not just for children with diabetes. If a child has a medical condition such as asthma or ADHD or a developmental disability, 504 plans are put in place to ensure that all children get an equal education.

Something is wrong when a school sends a note home in a backpack saying that a child with diabetes is not welcome in the school anymore, after a parent tries to enforce the 504 plan. (Here’s what’s wrong: it’s illegal. I’m not even going to get into the immoral part of it.) When school nurses won’t administer insulin or glucagon, it’s wrong. When a 504 plan is ignored, it’s wrong.

Yet, it still happens. The horror stories of parents who fight to have their children remain in public school and are forced to hire attorneys to ensure they are heard. The rigamarole these parents deal with and the hoops they jump through to make sure their children are safe are appalling. Parents of T1s already deal with enough. More than enough.

Safe At School

The American Diabetes Association has an entire section on their website called Safe At School. They also have Crystal Jackson, who is the name parents breathe as their gunslinger in the fight with schools who just don’t get it. And the media is always a popular choice to help raise awareness. (Public schools rely on federal funding. Don’t follow a 504 plan? They can lose federal funding. Seems insane, right? Yet, some people…some administrators… think they are above these laws.)

I’m still trying to understand why people who are responsible for a child’s education would teach everyone the lesson of denial, ignorance, and discrimination through their unwillingness to follow a 504 plan. It’s children, for goodness sake.

What are they teaching them?

You know what they are teaching me? Diabetes is still a mystery to the general public. Something to be feared (which it is, sometimes, but I digress). Something that they don’t want to deal with.

That’s not acceptable.

Not for me. My days of trailing my fingertips along metal lockered walls are long gone, but I would stand in them to stand up for these children. Any day of the week.

T1 Warrior Parents who have taken up 504 plan issues:

Moira has a great open letter to school administrators.

Hallie talks about the 504 plan from a teacher’s (and Mom of a T1’s) perspective. 

(There are more. Many more. It’s scary how many parents have to become well versed in 504 terminology and the law to keep their children safe at school.)

  1. Good grief – I had a box in my classroom with all sorts of hypo goodies in the 80s after my mom met with all of my teachers at the beginning of the year. And there were a few times my teacher had to yank me out of a test because I was showing hypo signs. The office ladies knew me by heart and had my mom on speed dial. My, my – have times changed.

  2. Safe at School is an amazing effort led by am more amazing woman, Crystal Jackson (behind every amazing program is a more amazing woman! Isn’t that the saying?) She is the emotional and energetic the heart and soul of all the great work ADA does with the safe at school program. Not the least of which are sample 504 plans.

    All to often diabetes get tribal in side the diabetes bubble. We fight amongst ourselves and support one organization over another, cure vs care and the all time worst one type verses another. Crystal and her works is so powerful, so empowering of kids and it makes it so clear that ADA brings passion to the table. That passion can and is growing to support adult PWDs in the work place.

    So next time you feel tribal inclinations that would seek to divide the diabetes community, remember it takes a village to raise a kids with diabetes, that kid needs a 504 while in school. That kid needs insulin test strips better care and eventually maybe even a cure. Love it all cause YDMV.

  3. In the mid-90s the rule at my brother and my junior high and high school was that all the diabetics had to show up in the nurses office to test BG before lunch and write it down in a notebook. We did all our injections in the cafeteria right before eating (w/o nurse supervision). I do remember that we never carried our meters or glucose on our person. If we felt low we asked to be excused and then had to test and treat in the nurses office. I think we could have carried the supplies with us, we just never thought to, which now sounds insane.

  4. This made me cry. It’s like you’re inside my life or something. My 10 y/o was diagnosed just under a year ago. I have been fighting with the school since the beginning of the year. They readily agreed to give her a 504 plan, I modified a version of the ADA’s Sample 504 that is available on the diabetes.org website. The 504 meeting went relatively smoothly, everything was signed and agreed upon and then… nothing. Not a thing has changed. They are still refusing to let my daughter test in the classroom, they are refusing to let her have insulin outside of lunchtime, I heard recently that she was made to go to another classroom to finish a test, which apparently took 4 hours. During that time it was known that her blood sugar was near 300, no wonder she was having so many issues. All of this was covered in her 504 Plan. I don’t think that the school is purposely ignoring her 504, I think that the people that actually are responsible for her on a daily basis have not READ it (her teacher and the health tech), since they were not present at the 504 meeting and did not sign the 504 plan. And also, the nurse (who is not involved in her day to day care/supervision) wants every possible detailed scenario written into the doctor’s orders before they will do anything, which just isn’t possible.

    Sorry to vent on the comments of your blog, but it just drives me crazy. And of course, I have to try to be diplomatic and avoid going all Mama Bear because when all is said and done these are the people who are responsible for my child 30+ hours a week. She still has to go to school there and we don’t’ want them to HATE us, especially if this is how they are acting when they are simply indifferent.

  5. I think I know what Bennet is saying. To that I will say that I co-hosted a webinar on rights for college students WITH the ADA – while wearing my JDRF shirt. You really can’t beat ADA for legal advocacy.

    type1dmom’s story above drives me batty! Seriously, what is the point of a 504 meeting if the teacher wasn’t even there!!! Everything was signed?! By who, if the teacher didn’t sign it. That school needs to be called on the carpet!!

    On the other hand, I did hear recently about someone claiming diabetes discrimination for something that had nothing to do with their child’s diabetes and everything to do with a rule that is equally (and legally) applied to all students. Nothing that could even be in a 504 plan. We need to be careful to protect the 504 plan and our diabetes advocacy for the people who truly need it like type1dmom above!!

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