| advertisement |
|
|
|
|
|
|
Back to School Chat with Crystal Jackson - August 30, 2006
Jeff dad of Nikki, 18, dxd @ 8 (70.146.37.160) Wed Aug 30 09:05:34 PM EDT 2006
Hello all
hello
Hi Jeff. Glad to see my msg got through.
Hey, Brenda
Hi!
How's Marissa doing in college?
Hi Brenda
We have a 504 every year
Hi all. Some are in the parent chat room and I will be moving over.
Marissa did very well academically and diabetically.Roommates were an issue. New ones when school resumes on 9/20 (U. of Cincinnati is on quarters).
Hi Barb We also are 7 and got diagnosed this year.
Hello Crystal
That's great to hear. She's a strong, smart girl so I'm sure she'll continue to do well.
I have no idea if she ever explained to any of her teachers about her diabetes. As she gets more into the nursing program, I am sure she will. She can probably TEACH the diabetes portion of the program.
Hi everyone. Let's get started a I know this is a busy time of year and probably lots of questions.
We never had a 504 so I will allow Crystal to take over and provide proper advice.
Does everyone have a 504 and health care plan in place for your child for the upcoming school year?
Yes we just did ours we got diagnosed on Aug4th
We do every year
Hi Crystal..private school..going in tomorrow to do health plan..504 in place for bus.
Does anyone have anything in particular they want to discuss? Problems, success stories?
my school doesn't seem to want to even discuss anything
Not yet, the assist principal agreed to a plan that she apparently couldn't agree to. Issues with rules in the health suite. Very frustrating.
What should the 504 have in it?
Sue, if you are doing a 504, then your private school must be receiving federal funds, yes?
We are still getting emails/calls from individual schools not giving 504
We deal w/ them as a one on one basis...go to the school meetings support the parents
504 should list which school staff personnel have been trained, where care will take place, field trip coverage, alternate time for academic test taking, etc. Check out the ADA's sample plan at www.diabetes.org
They said they want him to go to nurse for a pass if he's ever late switching classes due to D. I'm thinking no..what do you think? 504 for public school providing transportation.
You can find sample 504 plans at http://www.childrenwithdiabetes.com/504/
That's great Jeff. I have heard from more parents this year whose schools are resistant to 504. Happened in my own school district this summer and had to go in and give the administration an education and it is working.
We have a 504 in place every year
Sue, what is going to the nurse going to accomplish? And how often would he be late for class due to D?
when i was young, school was easygoing about all of this. whatever i needed. why is this so hard today??
Unfortunately, schools still are confusing 504 and IDEA. They get hung up on "major life activity."
our school is being difficult also. no one wants to take responsibility
We had a guardian angel for a school nurse last year. Worked 20 years this school system. They did not renew nurse's contract. All nurses who had been trained quit. One substitute nurse with sick children herself. Who told me they may have to bring in an agency nurse for Erin if she gets pulled to go to one of the other schools. Hired a nurse but we are not privy to when she will start.
Can a Coach keep my daughter from getting a drink and bathroom during P.E.?
Michelle, it's more difficult because schools are more concerned about liability. Sad, but true. What they need to understand that liability lies in the failure to act rather than the action.
Steve's concerned if he has to change a set, check ketones, treat a low that he'll be held up in between classes. Nurse would give him late pass.
The city school system only provides care during the lunch hours. They won't provide a backup at other times. Any ideas on how to start tackling this?
Paula, why would a coach deny that to any child? Write a provision in your child's 504 plan that states your child will have free access to water and bathroom.
A coach cannot!
We are VERY lucky with our school...We only had 1 problem when the County nurse tried to say Seth couldn't give himself a shot, that he had to use the pen. The Principal over-ruled her..
Write it into your 504...specifics about P.E.
hello
Barb, under 504 and ADA schools must provide care to keep kids medically safe. Kids are not safe if care is only being provided at lunch. Start with the development of a 504 plan and include coverage during school hours and extracurriculars in your 504.
Not if it's stated in the 504 that they can't
New high school..inexperienced nurse wants to be overly involved.
What type of training does the school have to have if no nurse is not on staff?
504 a good forum for initiating dialogue.
Hi Kyle
Schools must have a trained adult available at all times who can perform diabetes care tasks. Everyone who has custodial responsibility for your child needs to have a minimum knowledge of hypo and how to respond to hypo. Everyone at school should have a basic knowledge about diabetes.
Crystal, I agree about the liability issue. We are talking about kids and their health . . . it should be a non issue. Where can i find someone to come in and help with training . . . and more info on the laws of what responsibilities the school must have?
Jeff we had that in our 504 about water and restroom!!!
If the school is not receptive to development of a 504, what's the next best step?
My school district offers a 5 hour training several times during the school year that provides an overview of diabetes and teaches necessary skills like insulin and glucagon administration.
Each state's laws are different, then each school district is different.
Paula, if you have that in your 504 then and there's non-compliance then you need to discuss this with your 504 coordinator and maybe even the entire 504 team.
You have to find out the state laws and hold the school districts tot hem
We have a Health clerk...She's great!
Barb, schools have no choice about whether or not to implement 504 eligibility process.
How do find out state laws?
I'm willing to talk with anyone who is willing to listen at school. I've lived with the disease for 31+ years. They just can't find the time or don't want bothered
Federal law trumps state law. For example, if there's a state nurse practice act that says only nurses may administer insulin, then it is the school's obligation to make sure a nurse is available. Most school districts do not take this position because they do not have or do not choose to allocate funds for nurses.
Barb - I'm in Maryland too and have info on state laws if you want to email me: selketine@yahoo.com - I'm in Rockville
Thanks Carol, I really appreciate that. Will do.
Paula, give ADA a call to find out about state law. We have an ongoing research project re: school diabetes care and what a nurse is and isn't able to "delegate."
Crystal we have no nurse at our school. We live in Texas
Even though Federal law trumps, it is getting the individual districts to follow it
HI Crystal. Just popping into the chat for a few minutes. School starts for Sam on Tuesday. 504 in place. New principal of the high school is a pumper!
Paula, ADA just finished its work to pass a law in TX that requires every public school to have a minimum number of trained adults. Again, go to www.diabetes.org/schooldiscrimination and there's a link to the TX law. TX has been doing lots of training so you should be in good shape.
Crystal what about the bus drivers in New York State. Bus drivers in Thornwood, NY area refuse to get involved with "the medical use of cake frosting" or "medical use of juice." Was advised by Business Administrator who hires the bus company for the schools that they are aware "that the parents are up in arms in Albany" but they will do nothing until the laws are changed.
True Jeff and unfortunately - sometimes - it's district by district, but federal law must be followed regardless.
Hi Laura. Wow- Sam's principal is a pumper! Now if we all had it so good.
Agreed. That is why Debbi and I go to many meetings
Bus drivers is a tough area. But at a minimum they need to know how to treat a low. I am working on a project right now with NYDPCP re: glucagon training. NY is a tough nut to crack, but we are cracking it little by little.
Sam's mom, we have a new principal this year as well.
We are not sure how receptive he will be. I know that there are 2 freshman in my daughter's class coming in with Type I.
If anyone needs help with a school in Florida, just email me and I will help in anyway that I can
Yes, and I go to many 504 meetings as well. It is a struggle sometimes, but I also have found education truly makes a difference. Just went through a huge ordeal with my own "model" school district of Loudoun County, VA.
Use of glucagon is futile right now because they absolutely refuse to do it. I am just trying for then to use glucose gel if necessary.
That's great Jeff. We need more advocates like you.
Toni, where in NY?
Well, fingers crossed. Let's hope it's good. (He's not much of a tester.)
Ann - Do you have a 504 in place? We haven't had a nurse at all until last year - then we got a 1/4 nurse. I wasn't sure what that would help with... but actually she was quite good. She taught all the teachers how to administer glucagon. Go figure.
Jeff, We are very very new to this so what meetings do u attend?
Thornwood, New York. It's in Westchester county.
It is not unreasonable for a bus driver to at least be able to help a child - if needed - to get and open a juice box. Maybe come up with a plan where your child checks bg before he or she gets on the bus in the afternoon.
Royal Coach Bus Company.
Other people's 504 meetings. The schools don't always help the parents with the 504 (too much work for them). We make sure the parent gets what is need
what is needed for their child
Sadly, there still are a lot of problems out there, but I think we are so much further along than we were several years ago.
Yes, we do have the school nurse check before she gets on the bus, whoever she is....
We have never had to do a 504 and hoping not to have to do one this year either. Can a 504 be done even once school has started. I write a quick letter explaining Type I, bathroom privileges, snacks, need to get a drink and Phil hands it to each teacher attached with his picture. That has worked the past 3 yrs. of high school.
Crystal, do you have any upcoming Train the Trainer sessions (for school advocacy) like you did last summer in Orlando?
Ann yes you can do a 504 anytime
Ann, I recommend that you use 504 pro-actively rather than re-actively and develop it while things are going well.
Question. Regarding a bus driver helping a child with a juice box, what if there is a policy of no eating on the bus?
Ann, we never had a 504 either. As long as we had a meeting with the nurse/teacher(s) and explained everything, had written guidelines, etc. and there were no problems, we didn't need the 504. Marissa didn't have problems at SAT and ACTs either.
Remember - administrators, teachers, school nurses come and go. What is working well this year doesn't guarantee that things will continue to work well.
Ann - A 504 can be done anytime. When Sam was in 5th grade, his guidance counselor suggested he have a 504 to 'protect him later.' Boy, am I glad we have one in place. He hasn't used it a lot, but when we've needed it, it has been there. If you'd like to see a copy of it, please email me privately: laura.billetdeaux@childrenwithdiabetes.com I'm happy to share
Jeanelle, write a provision in your child's 504 that he or she is allowed to eat on the bus to treat a low.
Absolutely.
Oh gee, that was easy! I have my 504 meeting this Friday so this is well-timed. *Thank you!* I guess I didn't know I was "allowed" to do that :)
hello
Ann, do they let him re-take tests if he's high or low during that time??
Laura, ADA is planning to offer a school advocacy train-the trainer session next summer pre-FFL conference. This training is geared for parents and others who are interested in helping other families and for advocates who are willing to facilitate school advocacy workshops in your own communities. Keep this in mind if you are interested in participating next summer. More info to come soon.
Sorry to just jump in. I just saw that this chat was happening and thought I'd skip over and see what it was about. Thanks again.
Crystal after you write a 504 plan can u change it?
Hi again Kyle
does anyone have a pump
Paula, yes you can change it. Usually this means re-convening the "team."
Jeanelle, this isn't a private chat, it's for everyone...Jump in with both feet
Although the regs don't address it, I recommend tweaking your plan at the beginning of every school year.
His grades are great if he studies.
He does test during school, so lucky with that. If he is running high, he will go to the office and then run home to do a pump change and shot injection. If he misses a test they let him retake at the end of the day or next day. Doesn't happen to often.
Yes, that's a good question - can you change the 504. We are expecting to change from injections to pumping during this school year. I would expect that would be reason enough to change the 504. Are there other "qualified" reasons, or does one just say that they want to make a change (obviously within reason so as not to be troublesome).
If you "tweak" the plan, do you have to re-convene the team?
Jeanelle, you'll need to change your health care plan and your 504 - depending on how you've worded the 504 and how specific the language is for insulin administration.
Here is a letter that we give to all newly diagnosed kids for school. It has help a great deal. http://www.type1info.com/montgomery_letter.htm
Crystal, yes, I can see that is correct. Both will need to be updated. Thanks.
Whether the team needs to be reconvened is going to be different for each school district. If there is some contention about what needs tweaking, then the whole team will probably need to be reconvened.
Hello all. One question as I'm catching up...
Who is the "Team" for the 504. I just downloaded it off the ADA website and wrote it up and then signed it and gave it to the nurse along with the orders. Should there be a "team" involved with writing it?
Do any of your kids use a CGM device?
Another question, do others request that the parents be notified of substitute teachers? My son is entering first grade. Do I ask about substitutes for each "special" as well (gym, Library, Music, Art)?
No my son does not use a CGM device.
doctor, parents, administrator, teacher, coaches..
Joanna, usually a team is convened to determine whether or not a student is eligible and then a different team is convened to develop the plan. If you were able to develop the plan without a team, that's great.
bus driver, cafeteria director
sorry Crystal if I stepped on you
Thanks. Should I be sure that I get someone to sign it (like the principle or nurse) from the school?
Jeannelle, your school/child's teacher needs to have a plan in place for notifying substitute teachers. Sometimes this a one-pager with your child's info and his or her hypo signs and appropriate treatment.
That's a great question, Crystal. What are you seeing as far as success/non success in teaching school folks about continuous sensors? We are hoping to have one for Sam in the near future. And he will wear it to school. I hadn't thought about what to modify in the 504.
I know when we have a substitute Shannon goes to a regular class with a teacher that has been trained to handle her.
It's a question that came up for the first time a couple days ago. Obviously, we need to make sure that custodial staff know that bg needs to be checked before any action is taken. Also, I have to admit, we need to figure out how to handle the alarms and this is what I am struggling with.
Crystal, I was thinking to put something like that together. I just haven't done it yet. The cover of my 504 has my son's picture scanned in on it. I was thinking to use that and include his hypo signs and distribute that one sheet to his other teachers and the bus drivers. Would I be able to ask for notification of a substitute bus driver too??
Re: CGM - write into both the 504 and hcp that bgs need to be checked before action is taken. Shouldn't rely on cgm alone.
Jeanelle, all subs.
What if they tell me they can't do that?
Is anyone being told that parental attendance is required in order for your child to go on field trips?
That is another one that burns me up!!!
Jeanelle, work with your school or school district nurse to make sure that staff who need to know do know - this includes bus driver, coaches, cafeteria staff, music teacher, etc.
Interesting concepts with CGM. Teachers/staff need to be immediately responsive to alarms (for younger kids), or the device is less helpful. With older kids, I suppose it should be written into the 504 that they need the latitude to respond to the alarms independently.
Yes. The School Nurse is the ONLY one the principal will allow to be trained in Glucagon administration. Period. I or my sister must attend because the school nurse cannot leave the school.
I haven't been told that Crystal as I go anyway. I just don't trust the nurse to handle it so I make plans to go. She was very happy to hear that I would be going though.
Jeff, terrible problems in St. John's County (FL) re: refusal to administer insulin and refusing to allow kids to go on field trips unless parent attends.
Yes I have been told that. Last year the teacher told Shannon if I didn't go she couldn't go. But I told the teacher right away that my daughter would not be left out they would have to provide someone if I could not attend
I think it was implied that it was expected I would go. I've added to my 504 that parents, or the nurse or another trained person approved by the parents would go. I'm hoping that covers me.
Joanna, if you are willing to go that's terrific. But just know the school has a legal obligation to send a school nurse or other trained staff member. Also, believe it or not, your child will get to a point where he or she doesn't want parent to come along on a field trip. Trust me, it happens.
I went on many field trips (just to be sure Nikki was taken care)
Jeanelle, again, if it's your choice to go, then that's fine. But many parents work or have other obligations and cannot go.
At some point (when they get older) they don't want Mom or Dad going on the trips (you still worry though)
I haven't gone on a field trip with Devin since 5th grade. She is now a high school junior. There have always been trained personnel to help her if she needs it.
It has not been an issue but it may become one when I work more hours again.
This will be my first 504 Meeting on Friday. Is there anything I should be prepared with (I've already written the 504 (I'll make adjustments now). But I'm just nervous and wondering if I need anything else to prove I can do this (I have dr orders too).
Yes, Crystal I can see that will happen in the future. At this point he is 6 and wants me there. I'm hoping that the older he gets he will be able to take care of his bolus. I will worry about the lows..
My kids would be horrified if I said I was coming along.
Joanna, totally understand and agree. Been there, done that. Just remember that even when kids become self-sufficient there will be times when they need help treating a low. So even the most mature and experienced high schooler still needs coverage - during the school day, while on the football field, and during extracurriculars.
If you have a child who is involved with extracurricular activities, like sports, I recommend that you write specifics into their 504. For example, athletic trainer will be trained and available at all times when child is participating in football...
Oh golly, I think I'm just "getting" something! I should give out a copy of the 504 Plan cover to my son's soccer coach too! Man why didn't that dawn on me until now?! I'm so glad I came to this chat!
Crystal, I will look into St. John's County. Please email any of the particulars...school district, school name, etc
Great Jeff. We have an ADA volunteer who has been working it, but the school district is being very stubborn. We shall overcome. May I give our parent advocate your contact info?
I need to scoot. Thanks, Crystal, for all the great info. You are such a wonderful resource to all of us.
Our Soccer league speak of diabetes (pumps, insulin, snacks, etc) because Nikki was in for many years.
Crystal would the "athletic trainer" be an school aide? Don't think they'd go for this without an IEP.
Let's talk about distribution of the 504 plan. It is the schools responsibility to give and review a copy of the plan with school staff members who need to know.
Absolutely! Anytime to anyone. We are here to help
Toni - most high schools have an athletic trainer for its varsity sports to take care of injuries and such. This is what I am referring to.
Hi all
Jeanelle, is your sons soccer part of the school program. Here they are offered by the YMCA/YWCA
Hi Beth!
If it's a school program, then falls under 504. If it's a rec program, then ADA applies.
I don't really need to be here, but have been observing from the start
Hi Crystal............glenna Loch here.........we are still doing great
Beth, No, my son's soccer is part of a town parks and rec league. So if ADA applies, what does that mean? I could still do up a sheet about his hypos and give it to the coach (just not put it in a 504 heading). I or my husband will plan to be at all games/practices anyway.
If not a school program, then you just need to educate the coach and be clear about what the coach needs to do in the event of a hypo episode. Also, make sure the coach understands that your child needs to check bg.
Hey Glenna.
Crystal, I've got to go (early wake up). Thank you for everything you. May I post my web address for people to get info about school and contact me?
Beth, the more education the better. If you are going to be at all practices/ games by choice, then you will obviously be looking out for your child. Still, emergencies happen, schedules change, so a good idea to let your child coach know what's going on.
Sure Jeff. Great chatting with. Let's talk soon. Take care and good night.
Always put it in writing
Absolutely. If it's not in writing, then it didn't happen.
I just meant that Reann is a senior in college, so I don't have these problems. She is in a small Catholic college and just about everyone knows she has D.
My web address for school issues (mainly in Florida). Information does work for other States. You may also email through the web page..... www.type1info.com (Children Have Rights In School).
Beth, you've been there, done that. So I'm sure there's much you can contribute.
If anyone has any specific problem you'd like to discuss or want more information, then go to www.diabetes.org/schooldiscrimination and to CWD's fabulous school webpages. Also, you can get a free packet of info by calling 1-800-DIABETES.
Jeff, I came across that website today on a piece of paper I had laying around, Thanks, Now I know what it is for.
Thank you, Jeff, for sharing your expertise. Much appreciated.
Hope to see some of you at my advocacy training session next summer in Orlando (pre-FFL).
Thank you Crystal. Looking forward to seeing you again.
Toni, I never had a formal 504 in place, but did do handouts for her teachers. All but one or two were really great and Reann was able to resolve the problems on her own. Both principals told me if I had a problem with any teacher to contact them and they would take care of it.
Talk soon Jeff. Hope to see you in Orlando in July!:)
Thanks for being so helpful Crystal. I'm sure the ADA will be getting a few more phone calls in the next few days.
Wish I could come Crystal. I would love to be an advocate now that I am retired.
Thank you, Crystal for all your help.
We are hoping to make it to the conference and if we do, I'll hope to attend that conference. I would be most interested in helping other parents.
Hope so Jeanelle. Laura & Jeff will have info posted in the coming months about the training.
Beth, I had nuns in school until the 8th grade. I do believe I could trust any one of them to handle D.
I am going to sign off for now. Thank you so much for your help, especially for a "newbie" like me
If anyone has any additional concerns, please e-mail me at CJackson@diabetes.org. Thanks everyone for joining in.
Any last questions or discussion?
Thanks once again, Crystal.
Thank you
Hope to get some good news soon
All through Catholic school, Reann has had very few nuns, Has more in College than she did in elementary and HS put together.
I'll keep in touch
Absolutely. Always a pleasure and please know that the ADA is here to help with school challenges.
Good to see you here Crystal
Good luck with the new school year. Good night all.
Goodnight and thanks
|
|||
 |
 |
||
Last Updated: Thursday August 31, 2006 08:37:20
This Internet site provides information of a general nature and is designed for educational purposes only. If you have any concerns about your own health or the health of your child, you should always consult with a physician or other health care professional.
This site is published by Children With Diabetes, Inc, which is responsible for its contents.
By using this site, you agree to our Terms of Use, Legal Notice, Privacy Policy, and Safe Harbor Policy.
© Children with Diabetes, Inc. 1995-2013. Comments and Feedback.