It’s that time of year again. Preparing to send the kids off to school for a new year. That means new teachers, new pencils, new books and… a new diabetes toolkit.
The DOC (Diabetes Online Community) is all abuzz about what to include in their children’t toolkits. Will the school allow them to carry lancets and syringes, or will they consider those weapons and require they be locked in the nurse’s office? Do they have a 504 plan? Is the school allowing your child a 504 plan? Do you even know what a 504 plan is, or if your type 1 child needs it? If your answer to any of these questions is ‘no’ – pay attention. While the first question may be negotiable, the others are not. If your child attends public school, or private school that receives ANY federal funding (In the U.S., of course) you child is ENTITLED to a 504 plan for their, and the school’s, protection. A 504 plan is a legally binding document that the parameters are agreed upon by the parent/guardian and school personnel to provide accommodations for a child with a medical disability. Type 1 Diabetes is a listed condition, your child automatically qualifies, regardless of what the school says when you ask for one. It doesn’t matter what state you live in either, Section 504 is a federal law that supersedes any state and local laws.
A 504 plan for Type 1 Diabetes will generally accompany a DMMP, Individual Health Plan, or “Doctor’s Orders”, this is the form that your child’s endocrinologist submits to the school with specific directions of how to manage your child’s diabetes at school. It seems many schools will tell a parent they don’t “need” a 504 plan because they can just use the child’s DMMP to provide care and accommodations, and will work with the parent to provide additional care that the parent may request. However, the “trap” that many people fall victim to (myself included) is that the DMMP and a verbal agreement with the parent isn’t a legally binding document. Which means that the school can tell you they will do things the way you ask, but if someone drops the ball or simply chooses not to follow that agreement, you have little to no legal recourse if something were to go wrong.
No one wants to think about the “what if’s”, especially at school. I think we all want to believe that our child’s school has their best interest at heart. And in some cases, it may seem that way. Now, I’m not advocating that everyone go out and demand a 504 plan and then threaten to sue the school the first time they miss a scheduled BG check and your child is fine. I’m just saying that the 504 provides that protection because the school knows that IF they don’t follow it to the letter there can be consequences outside of a parent who gets angry. They can attempt to tell an angry parent without a 504 that they’re not required to provide accommodations, but they’re doing it out of the goodness of their hearts because they care about your child. Warm fuzzy feelings aren’t going to protect your child from potential medical negligence though.
When Angelina was diagnosed in March, she was in the middle of spring break, so we had about 10 days before she had to attempt to go back to school. One of the first things I did was contact the school district pupil services director along with the principal at her school through email and let them know that she had been diagnosed with T1 and I wanted to update her existing 504 to include t1 accommodations. I also very firmly stated that she would NOT be returning to school until accommodations were in place. Apparently I was too firm though because it sent everyone into a panic. I got a flustered reply from the pupil services director saying that she would get me in touch with the director of the district nurses to go over a plan. When I spoke with the nursing director she said that for other students with T1 they don’t usually do a 504 plan and they just follow the dr’s orders and try to make additional accommodations that the parent requests. Here is where I fell into the sense of false security that they would do all this for my daughter out of the goodness of their hearts. I emailed back and forth and played phone tag with the nursing director for a few days getting things in order and by Friday afternoon I had an appointment set up on Monday morning (which was the first day back from Spring Break) with the district nurse who oversees Angelina’s school.
Angelina and I went to the school that morning and brought all her supplies and doctor’s orders. The nurse already had a binder all set up with their logs and info sheets and most of the additional things we had agreed upon that weren’t covered on the doctor’s orders. I wasn’t expecting Angelina to go back to school the next day but they assured me that they were ready for her, and she was enthusiastic about returning so she ended up only missing that 1 day. They placed a new health tech at her school who was an RN. We live in California and our state law is that only registered nurses can administer injections. Since she was so newly diagnosed she needed help with most of her care still. She did start doing her own injections at school with supervision. However, the “backup” health tech who came when the regular HT was out was only an LPN, which means that he could not administer injections. There were a few days when I would get a call at lunch time that Angelina didn’t want to do her own injection and he couldn’t do it, could I please come up and give her her insulin. He seemed nice enough and asked a lot of questions about her.
Then a few weeks later I was looking over her weekly logs. We had it set up that the paper log they kept of every bg check, every meal, every injection would come home with her on Fridays. Well, I have the most disorganized, forgetful kid so they usually didn’t come home on Fridays. I usually only got to see them if I happened to be summoned to the school to do something for her that the HT couldn’t do, or if Angelina wasn’t cooperating and I remembered to ask for it. So it was really like every 2 weeks or so that I would get a copy of her log. While reviewing the logs I noticed something pretty alarming – a couple of the days the sub HT was there Angelina had low blood sugars (one day was a 47) and I never got a call. Not only did I not get a call, but there was no record of a recheck and she got sent home on her hour long bus ride like nothing ever happened. Obviously things turned out okay, but it’s still scary because what if they hadn’t? I never got the chance to speak with her bus driver to relay information about her t1, I don’t even know if the bus driver knew about her t1. Not to mention that the bus driver is driving the bus and can’t watch Angelina the whole time to make sure she’s okay. The other times Angelina experienced lows at the end of the day the regular HT would call me and relay her numbers, what she had to eat or drink to treat it, what her number was after 15 minutes and left it up to me whether Angelina could ride the bus home or if I wanted to come pick her up.
After I discovered this lack of notification and follow-up I contacted the district nurse and told her what I had found in the logs. She did say that the sub HT had notified her of Angelina’s low. Which is great for record-keeping, not so great for Angelina’s safety or my peace of mind. I told myself that he did recheck and just forgot to put it in the log, it was the end of the day. So, I accepted the district nurse’s promise to speak with him to make sure he called me if there was a next time. Except a few weeks later I noticed it again on the log, after I had contacted the district nurse. There it was – a 59 – “gave juice, feels ok”. No phone call home, no record of a recheck at 15 minutes and she went home on the bus. Since she did end up being okay it was just frustrating. But imagine if that juice and “feeling okay” wasn’t enough to bring up her BG. Imagine that she got on the bus and her bg continued to drop and within 30 minutes she “fell asleep” on the bus. Only no one realized it until she didn’t get off the bus at her stop and maybe the bus driver didn’t notice until she got back to the bus barn. It’s scary to think that could happen, but it’s not out of the realm of possibility. In that instance though, without a 504 in place I wouldn’t have had much legal ground to stand on because “call mom” and “don’t send on the bus in case of lows” isn’t in the medical plan. That’s in the informal verbal agreement that I had with the school. As far as their legal responsibility, the sub HT giving her juice and calling the district nurse to let her know about the low is all he was required to do.
In our case, things were okay but I was left with feeling of frustration and worried about if things didn’t turn out so well next time. Type 1 diabetes is an unpredictable beast. It doesn’t always do what it “should”. And I know enough about school red-tape to know that if something “bad” were to happen that the schools’ defense would be “We weren’t required to notify the parent, and the times that we notified the parent previously were out of the goodness of our hearts.” and it’s possible that would be the end of that and I would be advised to get a 504 plan that does make them responsible and required to contact me, if that’s what the plan says.
A 504 isn’t just about keeping the school accountable and helping to prevent accidental gap in care. It also can protect the child from discrimination. There’s nothing in my child’s medical plan about her being able to attend a class party and have a cupcake. So, if the school doesn’t feel up to figuring out her insulin needs and carb counts for a cupcake, without a 504 plan they can say she can’t participate becaue of her diabetes. Or, if she has a high BG and needs to use the restroom during standardized testing she can be penalized or get in trouble for getting up and using the restroom. Her medical plan doesn’t say anything about allowing her unrestricted restroom access, or extra time to finish a test if her blood sugar is out of range. Or, allowing her to take the test on a different day without penalty. Her medical plan doesn’t say that there may be days that she comes in to school late because we were treating a stubborn low BG in the morning. Or maybe we were up half the night treating a low or high bg and she didn’t get enough sleep so I let her sleep in for a couple hours and took her in at lunchtime. Normally, all of those would be considered “unexcused” tardies. Which means that they count towards truancy, and too many tardies or absences can lead to legal proceedings against the parents for truancy. Her school district requires a doctor’s note for any tardies or absences over 10 in a school year.
I don’t know about anyone else, but I certainly don’t take my child to the doctor every time they experience a low blood sugar. And Angelina doesn’t just have type 1. She also has asthma, allergies and an immune system that likes to catch every illness that goes around and make it worse than it was in the person before. I don’t take her to the doctor every single time she has an asthma attack. But I can’t send her to school if she can’t breathe, right? In 3rd grade she missed a lot of days because she would get a cold that would go straight to her lungs and she would be struggling to breathe for DAYS. She missed most of the month of January 2012 because of this. She would get better for a day so I would send her to school and the next day she would come down with something else that kept her home for several days. I wish I was exaggerating. Her teacher made an offhand comment to me one day about all her absences, I think she thought I was keeping her home just for fun. Especially since she would seem better when I did allow her to go back to school. So, one day she work up with junky lungs, but she said she felt mostly okay. I decided to give her a breathing treatment and send her to school. I dropped her off at 8:30am and went home and waited for the phone to ring. The call to come get her came at 10am. I headed up to the school and went into her classroom to help her collect her things. Her teacher came over and said “She was fine this morning and then all of sudden she just couldn’t breathe and started wheezing and coughing! I had no idea!” To which I just responded, “This is why she has missed all of these days lately. This actually isn’t that bad, which is why I decided to send her today.”
Anyway, the point of that is that not every single missed or late day due to a chronic illness requires a visit to the dr, but unless you have a standing document that says that, you are in danger of legal action being taken against you or your child for excessive absences or tardies. In some districts, excessive absences may also equate to the child being forced to repeat a grade, even if they have a passing report card and seem to be grasping the concepts.
For additional information on 504 plans and what to pack in your child’s school tool kit, please click on the page labeled “Info For School” on the top of this blog. Or just click here.