504 Accomodation in Schools

[star2727]

Hello to all members of the diabetic community. I am the mother of an 8 year old type 1, 5 years diagnosed. I have had a 504 Accomodation for almost 3 years now. I had to write it because no one at the school would do it. But of course I can't even get them to follow the **** thing either. The school always interperts the 504 to their benefit instead of following it litterally. Does any one have advice on how to make my son's educational experience a good one for everyone in the family and his school. I hate being the B****Y Diabetic boys mom, but come on!!!:****mate:

[Aftiel]

Hi Star,

I am familiar with 504 because my step son suffered from nystagmus when he was your son's age.

What I found in dealing with the school was that everything relied on the schools 504 contact person.

At one school she was awesome, at the next school the contact person was completely worthless.

If your school does not want to cooperate, my only suggestion is to pursue things at a higher level - namely the state board of education.

- Aftiel

[Erin]

Hi Star,

I'm a teacher, and at one point was an 8 year old diabetic in public school, so I come at this from two angles.

First: Federal Law REQUIRES that schools follow 504 plans. (section 504 I.D.E.A.) which you already know. If your school is being negligent in regard to your son's care I would first approach them in a nonconforntational way, see if there has been a miscommunication. If things do not improve immediately, then threaten legal action.

Second: There should be no room for interpretation in a well written 504 plan. It should say SPECIFICALLY and EXACTLY what teachers / nurses / administrators are supposed to do, and when. You should meet with his school diabetes team (there should be specific individuals who are required to care for your son's diabetes... probably the school nurse, his teacher, and another school staff member, in the school I work in it is a school aide who happens to be type 1 diabetic, and the principal) to work out any kinks in the plan. There may be school protocols and/or union issues that you will have to find a way around. For example, if your son is low he should not be expected to walk to the nurses office without adult supervision. The nurses contract requires that the NURSE treat the low. The teachers contract (and common sense) states that she can not leave her class unattended. What do they do? (Most schools have phones so the teacher can call the nurse to the room, others have protocols in which other, non-diabetic, students have to go and get the nurse). Having this type of meeting will ensure that everybody understands what they have to do. You should also write in the plan when you should be called (if his blood sugar is under X, or over Y, or anytime that HE requests, would be my phrasing)

You also say "I had to write it because no one at the school would do it." How exactly did you expect somebody at the school to write a plan for your son's diabetes care? If they already knew how to care for him, the plan wouldn't need to be written!

Unfortunately the system relies heavily on the parents in this regard, and diabetic kids with uninvolved parents often slip through the cracks at school. Only the most severe lows get treated... we had a kid slip into DKA once, well, the teacher who found him told me it was a really bad HIGH blood sugar, I have my doubts. And this is at a GOOD school, that makes every effort to help every kid who we know needs to be helped. But if there is no 504 plan, or a poorly written 504 plan, and the child does not take initiative to manage his or her own care (which in reality they can't be expected to do) it is impossible to expect non-diabetic teachers to know what is going on or what to do.

Call your son's teacher, as s/he can be your greatest ally. S/he is the person who is with your son for 6 hours every day. If she knows the visible symptoms of high and low blood sugar, and what she needs to do to help him (which will probably be calling the nurse, because many teacher and almost all NURSES unions require that medical conditions be treated by the nurse) you will probably have a much easier time.

good luck!
-Erin

[Aftiel]

Amazingly well written and informative reply Erin.

Well done.

- Aftiel

[Gangrel]

Amazingly well written and informative reply Erin.

Well done.

- Aftiel


Yes, I agree, and I'm not just saying that because you have a cool name.... (though mine is the boy version. ;)

[star2727]

I appreciate your response Erin. I see both sides of the perspective. When I said I had to write it, I had no problem doing that but the school gave us promises that they would do it by a specific date because the district had specific 504 Accomodations that were standard and that I could add to those. I have yet to see those standards. My husband and I meet with his teacher for 2 1 hour training sessions prior to school and have 504 Accomodation meetings 3 times a year. My husband also works part time so that he can go to school at the drop of a hat if something does go wrong. When I wrote his 504 I used the ADA's recommended 504 Accomodation which I thought was adequate.
I have filed with the California Department of Education Civil Rights Department to complain about the problems. The OCR department told me it was a medical issue and they could not get involved.
My son is all so on Lantus, which used to be kept at school for his 3 day disaster plan, in a duc taped container, until the nurse administered it to him 3 days in a row, instead of his Novolog.
The begining of 2004's school year our son was administered the wrong insulin doses everyday for the first 2 month of school. I even write down in his book how much insulin to give him for his food and they still gave him the wrong insulin. I have spoken to the School Board and the Superindent of the school district.
We are not letigise people and all we want is Our son to be educated fairly and in a healthy enviroment. We are at our son's school trying to educate his teachers and staff but they will say things like this is not our responsibility it's yours as a parent, maybe you should home school him.
I don't mean to vent and it's not your fault but this has been a really bad experience for us and our son. I'm tired of being made promises on our son's behalf and then have them be broken. He has just started to notice all this trouble and we try and keep it from him but it doesn't always work. I really feel that we have tried everything and have been given little in return. And to make things worse when we came back from Christmas break the school actually changed his whole 504 Accomodation with out telling us which is illegal.:smokin:

[Dewey]

Hi Star & welcome to the forums. Sorry to hear you're having such trouble with the school. :( When I read your post & the others', I reflected on how easy it was for folks like me to get through our school years.

I went to Elementary (some during the 70s), Middle and High school throughout the 80s, and never recall blood testing or treating lows/highs to be such an issue. My mom said that I had one low where a teacher wasn't sure what was happening (we were taking a test, and I kept writing my name over & over...), but that was the only bad incident we can remember. It just seems to me that back then, we didn't have all this red-tape & political mumbo jumbo getting in the way of us & our educations. Or maybe back then, people just used more common sense (when something's wrong with a student, don't sit by, DO something!). I think it's the former, due to all the government & political changes over the years.

My feelings as an outsider on this are, while the "504 plans" were initially formed with good intentions, people misinterpret(ed) them. Additionally, some in "power positions" may feel that they don't have to listen to a parent, child or family if a situation arises - or they just don't want to take "personal responsibility" if something adverse happens to the child.

In a way, it's too bad we couldn't go back to some of the old ways (i.e. My mom & other parents of Diabetic children would simply talk to, or give informative pamphlets to teachers & staff). It seemed less issues were encountered then. I know each person is different, so a pamphlet may/may not help, but it would at least provide a baseline for teachers & staff to work from in a situation.

[Aftiel]

I am not an alarmist, but if an 8-year-old child is being given the wrong insulin, we have a MAJOR problem.

At this point, if funds permit, I would drop $50.00 on a consultation with a lawyer.

What people don't get (staff at the school,) is that Type 1 Diabetes is serious, and requires attention.

I cringe to think what my reaction would have been had I learned my son had been given the wrong insulin.

It isn't rocket science. How could they screw that up????

- Aftiel

[star2727]

At the time 4 nurses were injecting my son per week and I didn't find out until the 3rd day what was going on. My son said that he kept telling her that the purple bottle was the wrong one, but that she wouldn't listen to him. After 3 days of comming home above 300 & 400 and waking up in the middle of the night with bad dreams and low blood sugar did I finally ask him what was going on. Only being in kindergarten he explained it with the purple bottle instead of the orange one. Of course I felt bad because I thought he was sneaking food and that I was over compensating and then causing the lows in the middle of the night.
Anyways, now I have every meeting tape recorded and followed up by a written statement. We don't want to sue because we don't think getting money will improve the situation. We have met several other families that have sued the district and got money but theit situation didn't change. I appreciate your thoughts and it looks like we will have to make the final steps and get a lawyer.

[rzrbks]

As a Decades teacher who was "Invited" into the T 1.5 Diabetes Club,

My reaction would be the same as Erin's:

Call your son's teacher, as s/he can be your greatest ally. S/he is the person who is with your son for 6 hours every day. If she knows the visible symptoms of high and low blood sugar, and what she needs to do to help him (which will probably be calling the nurse, because many teacher and almost all NURSES unions require that medical conditions be treated by the nurse) you will probably have a much easier time.

as a teacher who worked hard at being caring, I was astounded at what I didn't know about Diabetes until I actually joined.

But, now days, there are 4,567 symptoms you have with deal with in each class and unless the parent comes and speaks to the teacher, personally, and not in a "You Jerk" tone but in the tone you sound like you're using, the teacher really hasn't a complete picture.

And what you want is for you and the teacher to be on the same team AND the same page.

[someone]

What people don't get (staff at the school,) is that Type 1 Diabetes is serious, and requires attention.

My school takes it way too seriously. I can't walk into a classroom without the teacher asking if I am feeling ok.. sometimes I just wish they never even knew about it.

[Erin]

First, thanks everybody for the compliments. you're gonna make me blush :o

Star,

I would take legal action against the NURSES, not the school. I would make a complaint to the state medical board (or whoever governs nursing licenses) and have their licenses revoked if possible, or at least get a black mark on their record.

I'm pretty sure you can get all Federal funding revoked from your sons school district if they fail to comply with his 504 plan. that is $$$$$$$$ and should cause changes to be made.

I have met awful school nurses, and I have met amazing ones. It really is the luck of the draw, but your son should not be put in harms way because the school has a bad nursing staff. I was thinking... or rather hoping, that you were dealing with ignorance, rather than incompetence. Ignorance is easy to fix... incompetence you're sort of stuck with.

Is your son at an age now that he is capable of drawing up and administering his own insulin? You can require that he only be MONITORED while HE does the doses himself. You might have the best luck that way. and train him to say "call my dad, call my dad NOW" if the nurse tries to make him take the wrong insulin.

Good luck, I really hope this works out for you.

-Erin

[Erin]

no,

piss everybody at the school off and get your kid a cell phone. Make sure he only uses it to call you or your husband (maybe get him one of those Mego things). Have HIM call you or your husband if the nurse is doing something bad. This is serious business.

[Dewey]

no,

piss everybody at the school off and get your kid a cell phone. Make sure he only uses it to call you or your husband (maybe get him one of those Mego things). Have HIM call you or your husband if the nurse is doing something bad. This is serious business.
Yeah, they have those "Firefly" phones for children with the one-touch access to mom, dad or the police.

[star2727]

Erin,

Thank you so much for you help, I didn't mean to vent at everyone I just get soooo sick of explaining simple things that a RN should know. At home he administers his own insulin. But he makes mistakes, he's 8, so he needs lots of supervision. Anyways we asked his doctor to modify his plan, but the doctor said he thought we were crazy. He told us if the RN's can't administer the right doses what makes us think that they will supervise him giving his own doses. Unfortunately he's right.
I think the phone is a great idea, I was just afraid he would call me all the time. He has learned that he needs to be his only voice at school because the adults at school don't support him. I'm grateful for that but I feel he has lost some of his innocences in the process.

Thanks to everyone

[Erin]

Star,

Don't think of it as loss of innocence, think of it as maturity gained. Your son is learning how to fend for himself, and he'll be better prepared for the world at large because of it. (*trying* to find the silver lining)

When I was a kid I REFUSED to allow the adults at my school to be involved in my diabetes care. I just made sure my mom made sure EVERYBODY knew I should be allowed to eat whenever and wherever I felt I needed to. I would sneak my bg monitor into the bathroom to test, even though we weren't allowed to do that, because I HATED the nurse, and knew I could take better care of myself than she could. I was a stubborn little kid. I was your son's age. But, back then there wasn't Lantus, and we used the peak in the NPH to be the lunchtime insulin, so I didn't have to inject at school. I turned out okay. Your son will too :)

I only wish you lived in my state. I've a few friends who are second year law students who could help you out with a couple of threatening legal letters on very prestigious letterhead, if you did.

[Gangrel]

Erin brings up a point. Is there any possible way to change his doses or insulin so that he DOESN'T need to do an injection at school? Much like Eric, I used to survive on two injections a day, before breakfast and before supper, so we avoided al the hassles, and tried to let teachers know about low blood sugar, and that was about it.

I know that is not the preferable option, but might be a last resort.....

[JediSkipdogg]

What kind of insulins is he on? I just wonder why he needs to different vials at school. I know when I was on NPH and R back in the day I only kept a bottle of R at the school. And now days with Humalog and Lantus, you would only need to keep Humalog at the school. This would cause less confusion as they couldn't mess up the insulin that way and there is really no need for him to have a long acting insulin at school.

And the solution is to not sue the school or get anyone in trouble. It's to find a compromise on how to get it to work. Suing the school will only cause more problems as the nurses may then be layed off under review, at which point you have no one to give him any medical treatment as they won't have anyone authorized to do it. So you would only be hurting yourself.

I would just try to see what solutions he can work with. And I would start by figuring out if he really needs a long acting insulin at the school.

[star2727]

I think Lantus is the right choice for Adin. He was on NPH for 2.5 years and would have extreme highs and lows. Adin's average now is 131 which is great for him. He usually wakes up under 100 and stays there until the afternoon. We are still not sure if he sneaks food at the end of the day but our battles are with afternoon and evening highs, probably the lack of activity in the winter months, loss of day light and all, he doesn't go out and play after school.

I hope that next year he will do it on his own. He's a smart kid. You are right though Erin, he has learned a lot about his diabetes and himself through this experience and usually makes good choices because he's had to grow up so fast.
It's nice to hear an adults perspective from what my son might be thinking about. Erin do you feel that you held alot back from your parents when dealing with your diabetes at school? What would have made you feel more comfortable talking to your parents?:confused:

[star2727]

JediSkipdogg,

Yeah the lantus is no longer kept at school. I pulled that immediately. Every school requires a 3 day disaster plan for children who have medication and that's why it was kept at school. I explained that he could survive on continuous monitoring with novolog. We live less then 4 miles from school and I work 12 miles and if there was a natural disaster, earthquake, my husband and I would walk because they would not take care of him. We have our own disaster plan, everyone in the family knows that if the big one hits, Adin is first priority. Thats 6 people who will immediately locate him as the center point if communications are down.

Actually there is an interesting case that I just heard about through the ADA and some schools in Northern CAlifornia that are trying to change the CAlifronia Education codes in Califronia to be more Diabetic friendly. I'm watching it closely because it will affect all Diabetic Children.

Thanks for the input and thanks for keeping us all safe.

[nantomsuethom]

Star,
I am sorry you have to go through this. Thomas has a 504 plan in place and so far we have had no real problems. His 504 states that he is to test and treat where ever he feels he needs to. One teacher said something and was corrected and hasn't said anything again. He has a pump so he doesn't have to deal with injections.
I am a school nurse and if any of the nurses gave the wrong insulin we would be out of a job! One time is bad enough but 3 days in a row, that's ridiculous!
When I worked in a hospital we had 2 nurses check insulin doses before they were given.
The rest of our forums family is not going to believe this is coming from me:
But the more you let him do at home under your supervision the faster he will be able to do it all himself and in school.
Good luck.

[Erin]

And the solution is to not sue the school or get anyone in trouble. It's to find a compromise on how to get it to work. Suing the school will only cause more problems as the nurses may then be layed off under review, at which point you have no one to give him any medical treatment as they won't have anyone authorized to do it. So you would only be hurting yourself.

I would just try to see what solutions he can work with. And I would start by figuring out if he really needs a long acting insulin at the school.

I have to disagree here... some of the situations Star describes go far beyond a typical "mistake" or misunderstanding. The attitude of the school staff "maybe you should home school him" is not only offensive, wrong, and naive, it is also ILLEGAL. The repeated mistakes made by the nurses are negligent and constitute medical malpractice. This is not a case of a misinformed teacher not letting a student go to the bathroom or nurses office, or unwittingly saying something that hurt the child's feelings, these are BIG issues. I'm not an overly litigious person myself (****, I have to spend almost every minute of the day wondering if I am putting myself at risk for GETTING sued) If I thought the school genuinely had the child's best interest at heart I would never suggest taking legal action, because that goes against everything I believe in, as an educator. But they clearly do not.

It's funny though, that the school's insistence that every child have a 3 day supply of their medicines available is what resulted in your son getting the wrong medicine. oh what a tangled web we weave.

[Erin]

I hope that next year he will do it on his own. He's a smart kid. You are right though Erin, he has learned a lot about his diabetes and himself through this experience and usually makes good choices because he's had to grow up so fast.
It's nice to hear an adults perspective from what my son might be thinking about. Erin do you feel that you held alot back from your parents when dealing with your diabetes at school? What would have made you feel more comfortable talking to your parents?:confused:

I don't think I held a lot back from my parents while in grade school. My mom and I would have some pretty heated arguments if she wanted me to do something in school that I didn't want to do, like go to the nurses office to test. (She didn't want to encourage me to break school rules and test in the bathroom, but she wanted the results!) I usually won, simply because she wasn't there and couldn't make me do something I was dead set against.

But we had a really open "adult" relationship about the whole thing, and honestly there weren't many things that really bothered me. I was uncomfortable talking about diabetes with new people (teachers) so she'd give them all this information and the advice "Erin knows what she's doing, basically all you need to do is get out of her way" And the teachers did.

I think what made it so easy was how comfortable I was talking to my mom. And it wasn't like I would tell her a problem and expect her to fix it, it was like I had an equal voice (from a REALLY young age). Dad was there too, but he basically just did the grunt work, he wasn't part of the decision making process.

[star2727]

Erin,

We have made some steps for legal action. It's hard as a parent to know if you are being over bearing and expecting too much from a school, teacher or district. I know that my son will be fine. He's gonna be 8 in a couple weeks and will be able to handle this all by himself in a year or so. But the whole system seems so ridiculous. There will be some children out there who aren't as bright as Adin or you, and who's parents won't be well educated about their right's and the school system will railroad them. I worry about Adin everyday at school but I'm sure parents of non diabetics worry about their kids too. He will find his place.
I hope that by next year he will be able to have a cell phone and can call me to verify doses and give me blood glucose readings and leave the school out of it.
Thanks again for all your input it's been great.

[Belinda]

OMG OMG OMG!!!!!!!

YOU need to get a copy of the IDEA laws for a 504 they are federal laws and must be followed.......I teach special ed, was a diabetic student and have had 3 diabetics on my caseload....we never never never waivered from the plan, the students were allowed either to check BS in class or office (depending upon the students choice), meds were administered by school nurse or trained personel ( me being one of them). I can't believe the school and district is so flippant about a students care and health needs. I would check for an advocate to sit in on the meeting, and a lawyer. (I can tell you this....it is every school teacher/administrator/ supervisors nightmare to know they are coming) I would also have them read and explain your rights to you at the meeting where you have brought in legal help. This is one of those things where you can waive your rights by checking a box and signing. I would make them do it and give the explaination...chances are they don't know the law....and IDEA had new laws in effect JUlY !, 2005. PM me if you want me to get specific info from you from our 504 administrator....

[SugaryOne]

I'm also suffering through the public school system. I'm a high school freshman now, and I've been battling with the school district about this ever since kindergarten.

My mom thought about putting me on a 504 plan, but we decided it wouldn't have much effect. After battling my middle school last year, about halfway through the year I was able to store my diabetes supplies in my locker and test there.

Now I just carry my test kit with me in my backpack, and all my teachers know. I just hold up the black case to them and they nod, I go out of the room or to the bathroom to test.

I'm in the same boat as Erin though, my teachers (despite them being new this year to me) know I have handled myself for a long time now. The only time I have been to the nurse's office this year was only partially diabetes-related. I was low and throwing up, and the nurse didn't really even do anything. I just told her what I needed.

See, if you're upfront with the school, you usually don't need a 504. Talk to your son about advocating for himself, it certainly helps a lot. I hope for the best.

[Belinda]

I am shocked at the schools flippant attitude.....these are lawsuits just waiting to be filed. Maybe it is just my school or school district but the 504's here are followed through and we actually make sure kids that are asthmatic, diabetic, ADHD etc have one....... I can't believe it.....I am going to check with our 504 administrator next week....I have to know how you guys can get the right help.

[JediSkipdogg]

Ok, I've been meaning to ask this...but what the heck is a 504? Is this something new and since when? I don't recall ever having a 504 in school and I only graduated in 2000. Can someone give a brief explanation of how they work and what they are? Thanks in advance.

[Belinda]

It is a plan for people with diabilities that has no educational impact on their education. For example, mental retardation falls under Special Education but a person with diabetes, brittle bones, MS, etc.....may have no academic impact but other needs such as wheelchair accessability, checking BS in class or when/where needed, carry an inhaler with you if you have asthma.....etc...this is a plan that the school, parents and students come up with and it is to be followed. It must be followed it is a law if the student has a plan.

For instance, we have a student with arthritis at our school that is allowed to use the elevator as needed. It is as simple as that. Yes, she gets asked on occasions by various staff, me included why she is on the elevator and she simply says. "I have arthritis" and that is the end of that. The staff knows, she knows etc...but with over 900 kids in a building it is hard to remember all of the 504's in place. BUT we do know many of the circumstances of what type of students are in our school. We don't point them out but are given general info on all 504's. Those with diabetes, seizure disorder etc.....the team they are on and all related area teachers meet with the student, parent and administrators. This is why I find it so hard to believe that others are having such a hard time with the schools.

[JediSkipdogg]

When did 504s start? I'm with you Belinda in finding it hard that something like this could not be followed. Heck, I went through 12 years of school WITHOUT one of these and was never questioned about anything. If I had something wrong, I just let the teacher know and they let me go to the nurses office and the nurse had a simple typewriter typed set of instructions on what to do all made up by my mom. Nothing legal and nothing official. I guess I find it sad that schools have resorted to this level.

[Erin]

504's are started as part of the Individuals with Disabilities Education Act (I.D.E.A.) (i THINK in the 1997 revision, but I'm not sure)

They actually get their names from the section of this law which gives students the right to have non-academic specialized education plans. (Section 504 of I.D.E.A)

I also graduated H.S. in 2000 and never bothered with a 504, I just took care of myself. But schools have changed a lot since then, and diabetes care has changed a lot since then (not since I graduated high school, so much as since I was in elementary school) and sad as it may be, it is important that there is a legal record of what teachers/nurses/administrators are supposed to do, these days.