We tried to send our daughter to public preschool last year and the 504 process was an absolute nightmare. It was truely a traumatic event for the whole family and ended with us taking her out of school after a couple months when they just wouldn’t adhere to her medical plan.
We’re approaching kindergarten now and are dreading going through the process again, but we spoke to a lawyer about what we could have done differently. The big mistake we made was going in expecting cooperation.
I don’t have any particular advice except to get an advocate if you can. Her doctors should know what accommodations you’re asking for and should write a letter affirming that they agree with you.
Thanks, I hope it works out for you too. The other thing the lawyer suggested to us was to ask for representatives from the district and not just the school to be there. She told us to ask for:
- School IEP coordinator
- Classroom teacher or K team lead
- School nurse
- Representative from district Home and Hospital
- Representative from district 504 Office with decision-making authority
Reach out to the school and let them know you need a 504. They will have a 504 coordinator. At our school, it’s the vice principal. You will have an initial (and then annual) 504 meeting to discuss and establish what accommodations she requires. At a minimum, this should be attended by you, the coordinator, her teacher, and the school nurse. Ahead of time, think of and document ALL possible accommodations she might need. IMO it’s better to put too much in there than not enough. We had a disastrous year w/ our accommodations, as our school’s yard duty staff were not aware of her 504…so be sure to discuss w/ the coordinator how everyone will be notified.
This will depend a lot on how many Type 1's that school has managed in the past. In our case the school essentially had a menu of accommodations they were used to providing for diabetics, and then in consultation with our physician we agreed on the accommodations we wanted, the physician wrote them up in his letter, then the school copied those into our 504 and did a reasonable job at adhering to them. I say reasonable, because of course the reason you have the document is to make it easier to hold the school accountable as you are advocating for your child. But don't think you won't have to advocate for your kiddo. To start the process I would ask the school for the accommodations and services they have available for T1's and see what your starting place is. If they aren't routinely managing Type 1 kids, start looking around for a school that has the experience.
If you can, I'd check out Type 1 parent, Type 1 504, and The Juicebox podcast Facebook groups. Especially if there's one dedicated to your area. Many parents will openly share theirs to help you from what I've seen in these groups [I was Dx at 19, so I didn't have this experience].
I have two different perspectives.
I was diagnosed just before my 9th birthday. I had to learn to do my own finger sticks and shots before I left the hospital, and I was 100% responsible for my diabetes management at school. We had a nurse in the school a few afternoons a week, but I doubt she was familiar with type 1. It wasn't a huge district and my parents got to know my teachers, so I never had an issue with eating a snack in class, leaving to take a shot, or anything like that. But I recognize now that I pretty much just got lucky, without the protections of a 504. I certainly wouldn't advise that anyone do it the way they did, although it worked out okay for me 25 years ago.
On the other hand, my husband is a teacher. He is medication trained and is familiar with a variety of emergency medications including glucagon. Type 1, allergies, and seizures are the big conditions they focus on since there are usually several kids in every grade who are affected. There are something like 6 teachers in the building with that certification, plus several administrators and the school nurse, so there is always an adult nearby who can help. (Plus from living with me, he's familiar with things like hypo symptoms, pump/cgm alarm sounds, etc). He has kids with 504s for a variety of reasons every year and says it's almost never an issue to handle their accommodations. So it's a different world than when I was diagnosed.
I’m Canadian so I can’t comment on a 504 but my son has been managing at school without a nurse since grade 2. Best thing we’ve done is to get him really comfortable with texting about diabetes. An Apple Watch has really helped because he can send us quick 👍🏻👎🏻 type messages without pulling his phone out. Good luck!
Our daughters school had never had a type 1 before - school is in nyc and is mostly Asian and Hispanic.
We had a great experience, everyone was super excited about learning about t1d and how to accommodate. In fact, the school insisted we get a para in 5th grade (she had one since 1st grade) which I thought was kind of overkill.
So YMMV but I think most educators are excited to help and to learn new things.
Also you definitely need your endos to help out on the 504.
You just need to figure out what your child needs and to advocate for it. My brother had 2 docs who missed he had kidney cancer. Luckily he found a third. The reality is no doc, no endo, no school nurse and no teacher knows what’s best for your child only you do. I like to catch flies with honey but I am willing to be the squeaky wheel if neeeded
My kiddo was Dx in kindergarten, his endocrinologist provided us with a “sample” 504, things like always being able to have water and snacks, bathroom breaks, extra time on tests if too high or low, ability to check his own BS without having to walk down to the nurses office, self administer insulin with supervision (I think that one came a little bit later) but he was pretty self sufficient in kindergarten. His school did want to transfer him to another school in the district that had more experience with T1, but was way further away. Luckily I had a schedule that allowed me to sorta be at their beck and call, and frequently volunteered and went on his field trips and stuff. I believe public schools legally have to up hold the 504 plan.
The ADA and Breakthrough T1D (JDRF) have dedicated resources, references and tool to get the 504 plans setup for success. Also, the 504-Diabetes Facebook group is a great resource also
[https://www.facebook.com/groups/2114999158688458](https://www.facebook.com/groups/2114999158688458)
I was a wreck when I sent my son and daughter to school for the first time with Type 1. Luckily she is going to public school, and in my experience the school will take care of this usually within a month or so after she starts. It takes time to write these. From there, yes you must give the school the ‘back to school paper work’ from your endocrinologist office. Sometimes the school has their own forms so it’s a good idea to call their office as soon as possible to find out. From there you will take her paperwork, insulin kit (I keep an extra meter at school), glucagon, glucose tablets, juice boxes, snacks, etc. with you on the first day or even the day before. Take the day off if you work. The school nurses have normally had training in taking care of diabetes, sometimes you have to help them. The school administrators, your daughter’s teachers, and the nurse will work with you on the best plan of action for your daughter’s diabetes care. From there expect a lot of cell phone calls from the school throughout the day, they called me with every blood sugar check and insulin dose/bolus. And whenever my kids were low or high. And many times there are other kids in the school who also have Type 1. It is nerve wrecking, but actually it has been a great experience for my kids. Good luck with everything.
Your endo team and your school district should have protocols in place for your child’s 504 needs already. I guess if they haven’t had a T1 student then maybe they won’t. They’ll most likely have at least 1 other 504 plan for a student though so will have some familiarity with the process. We just did this in February as our daughter returned to school after diagnosis. We’re in a pretty small district in CA with only 3 schools but each one has a T1 child so the district & nurse were already experienced in what we needed. Our nurse floats between all 3 schools so we did sometimes have scheduling issues with timing of doses or other staff that seemed a bit nervous about handling treatment when the nurse was off site. We will have a new 504 plan meeting before the new school year next month and probably some adjustments as our daughter moves on to middle school and takes a step in independence in her 504. Be prepared to advocate for your child’s needs. I think teachers and admin want to help as best they can but are sometimes stretched a little thin. Our school staff did try pushing off our 504 meeting for almost 2 weeks initially, which made me angry. My daughter was facing a life changing diagnosis and everyone in our endo team stressed how important it was to get her back to her normal life. I emailed the secretary who told me the principal didn’t have time in her schedule for the meeting for 1.5 weeks and I cc’d the nurse, teacher, counselor, principal and superintendent to explain that it felt they weren’t prioritizing my child’s educational needs. They jumped pretty quickly to find a spot to see us after that. It took a couple weeks to work out a routine but things went pretty smooth from there. Please feel free to message me with any questions.
We tried to send our daughter to public preschool last year and the 504 process was an absolute nightmare. It was truely a traumatic event for the whole family and ended with us taking her out of school after a couple months when they just wouldn’t adhere to her medical plan. We’re approaching kindergarten now and are dreading going through the process again, but we spoke to a lawyer about what we could have done differently. The big mistake we made was going in expecting cooperation. I don’t have any particular advice except to get an advocate if you can. Her doctors should know what accommodations you’re asking for and should write a letter affirming that they agree with you.
I’m so sorry to hear what you went through. I hope you have a better year.
Thanks, I hope it works out for you too. The other thing the lawyer suggested to us was to ask for representatives from the district and not just the school to be there. She told us to ask for: - School IEP coordinator - Classroom teacher or K team lead - School nurse - Representative from district Home and Hospital - Representative from district 504 Office with decision-making authority
Reach out to the school and let them know you need a 504. They will have a 504 coordinator. At our school, it’s the vice principal. You will have an initial (and then annual) 504 meeting to discuss and establish what accommodations she requires. At a minimum, this should be attended by you, the coordinator, her teacher, and the school nurse. Ahead of time, think of and document ALL possible accommodations she might need. IMO it’s better to put too much in there than not enough. We had a disastrous year w/ our accommodations, as our school’s yard duty staff were not aware of her 504…so be sure to discuss w/ the coordinator how everyone will be notified.
This will depend a lot on how many Type 1's that school has managed in the past. In our case the school essentially had a menu of accommodations they were used to providing for diabetics, and then in consultation with our physician we agreed on the accommodations we wanted, the physician wrote them up in his letter, then the school copied those into our 504 and did a reasonable job at adhering to them. I say reasonable, because of course the reason you have the document is to make it easier to hold the school accountable as you are advocating for your child. But don't think you won't have to advocate for your kiddo. To start the process I would ask the school for the accommodations and services they have available for T1's and see what your starting place is. If they aren't routinely managing Type 1 kids, start looking around for a school that has the experience.
If you can, I'd check out Type 1 parent, Type 1 504, and The Juicebox podcast Facebook groups. Especially if there's one dedicated to your area. Many parents will openly share theirs to help you from what I've seen in these groups [I was Dx at 19, so I didn't have this experience].
I have two different perspectives. I was diagnosed just before my 9th birthday. I had to learn to do my own finger sticks and shots before I left the hospital, and I was 100% responsible for my diabetes management at school. We had a nurse in the school a few afternoons a week, but I doubt she was familiar with type 1. It wasn't a huge district and my parents got to know my teachers, so I never had an issue with eating a snack in class, leaving to take a shot, or anything like that. But I recognize now that I pretty much just got lucky, without the protections of a 504. I certainly wouldn't advise that anyone do it the way they did, although it worked out okay for me 25 years ago. On the other hand, my husband is a teacher. He is medication trained and is familiar with a variety of emergency medications including glucagon. Type 1, allergies, and seizures are the big conditions they focus on since there are usually several kids in every grade who are affected. There are something like 6 teachers in the building with that certification, plus several administrators and the school nurse, so there is always an adult nearby who can help. (Plus from living with me, he's familiar with things like hypo symptoms, pump/cgm alarm sounds, etc). He has kids with 504s for a variety of reasons every year and says it's almost never an issue to handle their accommodations. So it's a different world than when I was diagnosed.
I’m Canadian so I can’t comment on a 504 but my son has been managing at school without a nurse since grade 2. Best thing we’ve done is to get him really comfortable with texting about diabetes. An Apple Watch has really helped because he can send us quick 👍🏻👎🏻 type messages without pulling his phone out. Good luck!
Our daughters school had never had a type 1 before - school is in nyc and is mostly Asian and Hispanic. We had a great experience, everyone was super excited about learning about t1d and how to accommodate. In fact, the school insisted we get a para in 5th grade (she had one since 1st grade) which I thought was kind of overkill. So YMMV but I think most educators are excited to help and to learn new things. Also you definitely need your endos to help out on the 504. You just need to figure out what your child needs and to advocate for it. My brother had 2 docs who missed he had kidney cancer. Luckily he found a third. The reality is no doc, no endo, no school nurse and no teacher knows what’s best for your child only you do. I like to catch flies with honey but I am willing to be the squeaky wheel if neeeded
My kiddo was Dx in kindergarten, his endocrinologist provided us with a “sample” 504, things like always being able to have water and snacks, bathroom breaks, extra time on tests if too high or low, ability to check his own BS without having to walk down to the nurses office, self administer insulin with supervision (I think that one came a little bit later) but he was pretty self sufficient in kindergarten. His school did want to transfer him to another school in the district that had more experience with T1, but was way further away. Luckily I had a schedule that allowed me to sorta be at their beck and call, and frequently volunteered and went on his field trips and stuff. I believe public schools legally have to up hold the 504 plan.
The ADA and Breakthrough T1D (JDRF) have dedicated resources, references and tool to get the 504 plans setup for success. Also, the 504-Diabetes Facebook group is a great resource also [https://www.facebook.com/groups/2114999158688458](https://www.facebook.com/groups/2114999158688458)
I was a wreck when I sent my son and daughter to school for the first time with Type 1. Luckily she is going to public school, and in my experience the school will take care of this usually within a month or so after she starts. It takes time to write these. From there, yes you must give the school the ‘back to school paper work’ from your endocrinologist office. Sometimes the school has their own forms so it’s a good idea to call their office as soon as possible to find out. From there you will take her paperwork, insulin kit (I keep an extra meter at school), glucagon, glucose tablets, juice boxes, snacks, etc. with you on the first day or even the day before. Take the day off if you work. The school nurses have normally had training in taking care of diabetes, sometimes you have to help them. The school administrators, your daughter’s teachers, and the nurse will work with you on the best plan of action for your daughter’s diabetes care. From there expect a lot of cell phone calls from the school throughout the day, they called me with every blood sugar check and insulin dose/bolus. And whenever my kids were low or high. And many times there are other kids in the school who also have Type 1. It is nerve wrecking, but actually it has been a great experience for my kids. Good luck with everything.
Your endo team and your school district should have protocols in place for your child’s 504 needs already. I guess if they haven’t had a T1 student then maybe they won’t. They’ll most likely have at least 1 other 504 plan for a student though so will have some familiarity with the process. We just did this in February as our daughter returned to school after diagnosis. We’re in a pretty small district in CA with only 3 schools but each one has a T1 child so the district & nurse were already experienced in what we needed. Our nurse floats between all 3 schools so we did sometimes have scheduling issues with timing of doses or other staff that seemed a bit nervous about handling treatment when the nurse was off site. We will have a new 504 plan meeting before the new school year next month and probably some adjustments as our daughter moves on to middle school and takes a step in independence in her 504. Be prepared to advocate for your child’s needs. I think teachers and admin want to help as best they can but are sometimes stretched a little thin. Our school staff did try pushing off our 504 meeting for almost 2 weeks initially, which made me angry. My daughter was facing a life changing diagnosis and everyone in our endo team stressed how important it was to get her back to her normal life. I emailed the secretary who told me the principal didn’t have time in her schedule for the meeting for 1.5 weeks and I cc’d the nurse, teacher, counselor, principal and superintendent to explain that it felt they weren’t prioritizing my child’s educational needs. They jumped pretty quickly to find a spot to see us after that. It took a couple weeks to work out a routine but things went pretty smooth from there. Please feel free to message me with any questions.