Does anyone have a 504 plan for your child? I’ve never felt we’ve needed one but Anthony will be in middle school next year. As much as I don’t like the thought of needing one I’m getting a little nervous about not having one. Any thoughts?
hi Jennifer, Jacob is now in high school diag in 5th grade we never had one, I think I created one for middle school and the guidance counselor called me and said he really doesn't need this, especially for us with Jacob being relatively stable esp at school it really was a non issue. All of Jacobs teachers were notified of his D by myself or the school nurse and he did what he needed to do.... he really only tested at the nurses office. now in high school we still work with the nurse but he just has emergency supplies there and does his own testing and bolusing. I know a lot of parents with children with diabetes who advocate for 504's I guess it depends on how stable the child is and how supportive the school nurse and administration is in general. In my mind diabetes is really not a disability, it is a unique illness in that although the medical team of course is involved I feel the parents and child are the best part of the diabetic team, supporting the child with the right doses of insulin and the right can do attitude. Best of luck! Amy
My kindergarten son has one and I have been told it is better to have one in place than not. Mostly because if a problem arises you have some leverage. It shouldn't be seen as a threat to the school, it is merely a tool. Trying to get one after an incident would be more controversial for everyone involved. I would say go for it; think of it as a cushion to fall back on.
My daughter is starting high school next year and the nurse mentioned to me that we should get a 504 because of the possible need to eat or break during tests such as AP exams or SATs. I haven't really investigated the issue, but that may be something to ask the counselor about.
Testing and exams are my main reasons for thinking about getting one. If state testing time comes and his numbers are whacky he has to test as it without the 504. With it he can test at a later time when he is back in range. He's always been pretty stable and we've never had any issues but I will admit I am very much a "What if" type of person! What if he needs it and I didn't get it? Then what? California is changing their state testing this year so scores won't count so I have some time to really think about it. I know some schools take it personally when you ask for one.
My son is now in 5th grade, diagnosed in preschool. We started a 504 plan in 1st grade after a few unfortunate incidents in kindergarten that I believe would have been avoided if we had the definition and clarity that a 504 plan provides. Up until last year, that was the main use of Caleb's 504 plan - to ensure everyone was clear about their roles in Caleb's care and there was no confusion.
Unfortunately, last year Caleb was the subject of significant discrimination and having the 504 plan in place was very helpful. The school tried to completely revise his plan without our consent. We ultimately had to retain counsel, but were able to get our issues largely resolved and it was important for us to have the 504 plan in place and to understand our rights.
I don't think it can hurt. I don't see how it can be anything but a useful tool for everyone.
We did not have a 504 plan in place, but had made several requests related to testing and PE (my daughter is 13, diagnosed 8/13/12). At the beginning of this school year, when I made the same requests as last year, the counselor called me and said the teachers were asking for a 504 plan. It really is to protect her and to protect them... we asked for no testing with a BG over 200, no PE with a BG over 300, etc... and even included allowing for her to call home with questions at any time. Our school has been great about it, but the 504 will follow her all the way through high school and even into college. Also, if another student complains about her getting 'special treatment,' the school then has documentation as to why they do what they do. I did not want to pursue it when she was first diagnosed -- the school is great, and there is already so much to do...and I do not like to think of her as 'disabled' -- but for us I think it was the right thing to do. I have great peace of mind knowing the plan is in place.
My biggest drawback is not wanting any “conditions” attached to his academic transcript. He is not disabled and anyone who sees the 504 will know what it’s for but I don’t want him to ever appear different because he had a 504. I won’t lie. If there was a special form just for diabetes that wasn’t so broad as the 504 it wouldn’t bother me so much. He is super intelligent and I don’t want anything to cloud his accomplishments. I don’t ever want it to appear that he accomplished what he has because of special treatment. I know that’s not realistic but that’s honestly how I feel.
I had always heard you should have one just for safety. So my daughter is in kindergarten and we have one. I've heard some schools don't really like doing them ( I think it costs them money but not sure) but our school just said whatever makes us comfortable. We tried to be very respectful when requesting one and told them that we'd like in place by the 2nd month of school, which gave them sometime to work on it. Our school nurse had actually never done one before. I think it's a good idea. Your son in entitled to have one because of his dx, it's just a safety net and also in ours we made sure Mikayla could have water at all times and have her blood sugar checked and how things would be handled. I know your son is a lot older than my girl so it's a little different.
I wonder if it would be helpful because he is a little older. He doesn’t need someone to look over his shoulder to check his BG or correct it because he has a pump. Would it give him the freedom to do these things on his own?
My daughter does all of her own cares -- checks her BG, gives a correction, adds her carbs, and gives her insulin with her 504 -- because her endo has labeled her as independent. When we put the 504 in place, we basically set the parameters, and most of them revolve around exams (not taking important exams/state testing when she is too high that her thinking is clouded), physical activity, and allowing her to carry her purse/supplies/cell phone with her at all times. I agree with you that I do not want her 'labeled', so this was hard. For me, I came to the conclusion that those who she is with all day need to know she is diabetic so that she stays safe, and if this helps her stay safe and puts her on a level playing field when it comes to her academics, than it is worth it. But, it was a hard decision, so I understand your hesitancy.
Jennifer, Your comments are helpful. A 504 plan can stipulate whatever you wish and is agreeable by the school district. My son is 11 and does everything at school himself. He does everything in the classroom or wherever he is. He does not go to the nurse’s office and doesn’t even see her during the day. The 504 plan makes that clear. It also states that should he need assistance, the nurse will be available to him. It also states what acceptable bgs are for test taking and that he should be allowed to drink and use the bathroom without penalty. His plan was much different when he was six years old - much more detailed. We’ve changed it as his needs have changed. I have never viewed the accommodations as special treatment. The reality is that my son has special needs and accommodations need to be made to keep him safe at school. They are simple accommodations, but they are necessary. He also has a peanut allergy. His 504 plan addresses that. Those accommodations are even simpler, but again necessary to keep him safe. I’ve never had the impression from anyone that I have come in contact with that these accommodations are special treatment or not needed. Nor do I think anyone thinks it gives Caleb an advantage. Caleb is highly functioning and in the gifted program with nearly perfect grades. His accommodations are not learning based, they are medical based for his safety. The concept that a 504 plan may ever be viewed by someone as a negative is new to me. I just haven’t come across that and am curious if people have given you the impression that it might be viewed as a negative. Caleb’s teachers and classmates have by and large been very acceptable and understanding of his needs and I don’t think it’s ever made them view him negatively. If anything, Caleb’s maturity in dealing with diabetes has impressed those that surround him and garnered him respect. Our only difficulty was when a staff member refused to comply with his 504 plan. She has been removed from his care as a result. Without the plan in place, that would have been more difficult to address.
Thank you. Lorraine. That puts it in the rational perspective I needed. Anthony is also in the gifted program and top of his class. Obviously he got there on his own merit since he does not have a 504. I want him to have freedom at school to do what needs to be done without fanfare. He does not need the nurse unless there is a problem, which there never has been. He's never been out of range during testing or PE or anything but if he ever was I have no leverage without the 504.
The one thing I have to have for my son who just started middle school are the medical papers. As for the 504, unless your child really needs something additional, like extra time during a test or has other special needs, this is something you decide on your own or with your doctor. I haven't done it for my son because he has done well academically. I hope you get the answers you seek.
Everyone is different, right? That goes for what they eat, how they deliver insulin, what foods can be complicated to manage and how they want to deal with something like a 504 plan. So you guys should do what makes you feel comfortable. I think your last statement is very meaningful though. Although you may never need to use the accommodations, it's still good to have them in place just in case you do.
I don't think it's unusual for a school to suggest (I won't go so far as to say discourage) that you don't need a 504 plan because they've done this before, or your son is so capable, or whatever. I believe the motivation for such a suggestion is either a lack of understanding of the needs of a person with diabetes or self-preserving in nature (or both). The 504 plan states everyone's roles and provides clarity for everyone, but more than anything it protects your son. If there's a bump in the road and a school staff member doesn't do something he or she was supposed to and there is no 504 plan, the school is in a much better position than if there was. Resolution can be much easier if there is a plan to point to. We have had a couple of situations where we had to provide a reminder. It was easy, because we had the plan that everyone agreed to to point to.
We will always have a 504 plan for Caleb. It will change through the years, but I feel it's very important to secure his rights and ensure his safety as well as eliminate the risk of discrimination. Our experience is people easily forget that diabetes can make being a student difficult. Particularly when the student appears to be fine and is fully functioning and making it look like it's no big deal. That's particularly why I think it's important to get everything in writing.
I think it's worth mentioning that a 504 plan is different than an IEP. A child's academic ability or performance is not relevant to a 504 plan. We actually had some confusion when Caleb started a new school - the administrator didn't understand why we weren't separating things like ensuring Caleb's bg was in acceptable range before an exam in an IEP. It was because he didn't need an IEP and the non-medical references were few and did not warrant a separate document. Things like ensuring that there is a trained person available to the student at all times, including extra-curricular events and field trips are included in a 504 plan. We had a couple of before school activities that did not provide this until we raised the issue and pointed to the 504 plan. Being able to have food on the bus or use a cell phone to communicate with a parent are things that may not be permissible for students but are needed for a child with diabetes. Substitute teachers and bus drivers need to be made aware of this and the 504 plan ensures that. Caleb's bus route in mapped in such a way as to minimize the time he's on the bus. These are all non-academic things, but are important for his safety. Do staff members need to be trained in glucagon? Although the doctor's ordered may specify a dosing, they do not ensure that they are staff members always available to administer it - a 504 plan does.
There is another diabetic child at our school 1 year younger than my son. His mother happens to be a friend of mine and a teacher at our school. She is in the process of implementing a 504 for her son. I get the strong impression the school is not pleased with her decision. It could be that because they all work together the rest of the staff is taking it personally and it is a slightly awkward situation. I don't want to run in now and give them the impression she put me up to it. I don't really care what the school thinks but as she works there I don't want to make things more uncomfortable for her. They have always been good about anything extra I ask them to do but I really like the idea of it being required instead of them being nice. At the same time, in 5 months my son will be finished with the 5th grade and next year things will need to change for middle school anyway.
That is really unfortunate that your friend is being made to feel that way. At best it’s unprofessional but it borders or discriminatory. It’s her and her child’s right to have a 504 plan. It should be an expectation, not an exception. That beig said, there is are good and not so good ways to approach this. I think it’s best that it is in the spirit of clarity. It’s not about watching anyone or forcing people to do things or questioning credibility or anything. Discussion of accommodations is very helpful. Documenting discussions avoids confusion. That is the intent - to have everyone on the same page. Now is a great time for you to approach the personnel of the middle school. I have already done so for one that we are considering for Caleb. I had so many questions and was so pleased by the cooperation and responsiveness I received. Start out with good intentions and the spirit of cooperation. Set the tone and understand what is currently done and it will relieve a lot of stress (should there be any).
I understand the perception you are describing about bringing this up at the current school. If things are going well, maybe it makes sense not to bring up a 504 in that circumstance, although it really should never be an issue. 504 plans are common place and should never be viewed as an inconvenience or afront to anyone. But approaching the raw school asking to understand how your son will be cared for and asking to explain what his needs are (and it sounds like they are very common place and straight forward) should be welcomed by the staff. It makes everyone’s role easier. Have you ever sat in on a Safe at School online session or the like? I can link you up with one. I think you will find it useful in the tone it sets and perhaps reinforce how this is not something that should be taken personally by school personnel or anyone. 
No, I have not. If you could link one that would be great! We will have the same nurse next year since our nurse covers our current school and our middle school. I'm hoping this will make things smoother since she is already familiar with Anthony. I think it can be harder to try to implement one when things have been going well when you haven't had one since the beginning. I think I will wait for next school year to make it official but it is never to early to gather all of the information I need. I would like for it to be already complete on his 1st day of 6th grade. If anything changes this school year, I will get one in a minute but as long as things stay smooth sailing I think it can safely wait a few more months.
Thank you for sifting through my typos from my phone. Hopefully I'll do a little better on a laptop.
Sounds like a good plan. Maybe you can even approach it with the nurse first from the perspective of new school, new people, just want to be sure all things are clear. And if transitioning to middle school now means more teachers (one for each subject) you can even use that in your positioning - many more players, want to be sure there is no confusion.
So here is the ADA Safe at School link - you will find sample 504 plans. You can modify them to be more or less detailed. These are just examples. (Look on the right column of categories).
http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/
The ADA also has a series of YouTube videos which are a wonderful orientation on specific topics for anyone in the school setting who will have a student with diabetes.
This document is a very useful comprehensive statement on a student with diabetes' rights: http://web.diabetes.org/Advocacy/legalmaterials/LegalRights/LR-StudentswithDiabetes.pdf
This is a very practical guide for helping the student with diabetes:
http://www.ndep.nih.gov/media/youth_schoolguide.pdf
The webinar I was thinking of is mentioned here, but I cannot find the archive online to watch now. http://main.diabetes.org/site/MessageViewer?em_id=528082.0&dlv_id=502126 Crystal Jackson is THE expert on Safe at School. Google her and you'll find several great articles. Also, she talks about the program here, although this is not the webinar she typically holds each year in August: http://www.blogtalkradio.com/diabetessocmed/2013/05/14/dsma-live And yes, that is me as one of the cohosts of that show. I didn't mean to make a plug but it's the next best thing to the actual webinar that I can currently find. Crystal really is so helpful and informative on this topic.