Diabetes and schooling - questions?

[selketine]

Tami and I are attending a conference sponsored by the ADA on school advocacy (in the USA) and diabetes so if there are any questions that we can bring with us (not until later in October) please feel free to post them here. Of course maybe we or someone can answer them before then but otherwise we'll try to find out at the meeting.

Schooling can be daycare through college and public or private.

It always helps to note what state you are in. Federal laws apply equally everywhere but some states have reinforced the laws with policy and guidelines to clarify the process and entitlements.

Anything else you can think of Tami? Hope you are feeling better!

[Tamara Gamble]

Carol, I'm popping this up.

Hey, you guys help us out here. We need your input to be successful. Our goals are to not only focus on our own states but to isolate the one's with the biggest problems and trouble shoot it by using what has been succesful elsewhere.

We need your list of questions and problems so we can do a good job for everyone not just ourselves. Carol is working on a project that I think can revolutionize a few things and we need you. So speak up.

I think hearing about what is working for you is important as well. How is your school accomodating your children? What little tips and tricks have you found to be successful? Who is having a problem with getting a 504? Who has never heard of one before and where do you live? Did the school identify your child and give you the handbook and schedule a meeting or did they say it wasn't necc when approached about the subject?

Please help us to be better advocates by participating in this project. We would really appreciate it.

Can't think of any thing else. I'm not better yet but working on it. Don't worry it's not fatal or anything, I just have exhausted myself so it's going to take a little time. I can't think as clearly and it's ticking me off.

Talk to ya later! Tami

[wendyc]

Ladies,
I don't have any questions pertaining to us because you answered them all already:)
My questions are just things that have bounced around in my (very empty?):p head.

What if a child goes to a private (religious or other) that does not accept or abide by a 504. The school does not receive federal funding. How does that effect the child? Does the parent document that the school did not accept the 504?

What if the teen gets diabetes between graduation and the start of college? Obviously a 504 could not be put in place.

What if the student gets D while in college?

I can't believe I'm thinking of college...the girls are only 5 they just started K last month:eek:

[Pammers]

My big question would be what leverage one would have to get an aide in a Kindergarten or Pre-K class? I don't like the idea of my little one going back and forth to the nurse and am concerned that the teacher will be too busy and distracted to notice sign of hypoglycemia until it is too late. :(

[wendyc]

In our school, the nurse comes to Abby. We have it written in the 504 that in the event she needs to go to the nurses office (say if nurse is treating another child) then someone is to walk her. Preferably, her sister.
The student teacher ratio is 1 to 18 with a classroom aide. On top of that, there are parents who come in to help also. Abby's teacher will advise them of signs and symptoms.

We however, are lucky. I know not as many students have the same setup we do.
I would want very specific rules about how my child was to get to the nurses office.

[pookas]

Very good question, Pam. Hunter had an aide in K and now in 1st grade. I was ready for a fight, but the school obliged. Extra money is usually needed for a fulltime aided to be in class w/ the child unless she/he is the classroom aide as well.

Here's my question? Why can't we have a school nurse in all public schools? I know, funding, well, someone needs to find the money somewhere. If HUnter's school didn't have it's own nurse, I would move so he could have a nurse present in the school. It's ridiculous that these small kids who can't even tell when they are getting low, have to take full responsibility of their own care until the parent comes in at lunchtime to check BS and give insulin.

Also, I feel something needs to be in place for all parents to go by and state health depts need to get on board to help w/ training the schools. I had the sample 504's which were great, but I didn't know where to start to get meetings, who would train the school, etc. I had someone come in from the PA State Dept. of Health come to the school and she did a great power point presentation for Hunter's teacher, aide, school nurses, principal, bus driver, etc. We as parents [especially newly dx'd] need more guidance on the 504 road.

[Pammers]

Our school has a full time nurse - the same one that moved my other son some 1000 feet or so when he obviously had two (and I quote) "misshapen" arms and wouldn't call an ambulance for me. Sorry if I don't have alot of faith in the skills of the school nurse. :(

[selketine]

From asking around at my school it seems that even with IEP's in place that give money to the school it is unheard of almost for a student to have an aide assigned to them. There are aides in the kindergarten classroom but they'd be there anyway helping out so I'm not sure they'd count. I've seen a few people mention that the school was very willing to hire an aide just for their child and that was the school's way of dealing with things but that seems to be rare.

Our schools tend not to have nurses - the nurses "float" - I guess they are ghosts or full of helium. The schools have "health aides" who are trained and that is o.k. I have not had the most positive warm fuzzy experience with this health aide but I still hope she will be very capable.

The school training issue is a good point. How did you find that person Linda? I wouldn't have thought to look to the state health office.

Another thing I've been wondering is whether it is typical to sign some sort of "release" form for the school to contact the doctor directly with questions. I can see questions once the 504 is in place and they have some sort of emergency and need help or whatever. But I'm thinking more during the 504 process as to whether members of the committee can talk to the doctor directly without me being in on the conversation. It was mentioned to me when I was talking to them at our school about the 504 that they would want me to sign some sort of consent form so they can contact the doctor and they'd be sending that along with the other forms. I didn't think about it at the moment but have later.

[wendyc]

Our school has two nurses, they each are assigned to the elem. schools (we have two) so that the switch back and forth on designated days and one is always on site.

They invited me to the school to do a presentation about D for Abby's class.

Joslin sent me a brochure about nurses training for D, and I gave it to them. The nurse on duty copied one for every nurse in the school system, and said that one of them is going to go.

I guess something is going right in my life right now:)

I really feel for those of you who have just ok care for your kids. This is the first time since A's diagnosis that I've felt comfortable leaving her somewhere other than Grandma's or my T1 babysitter.

[pookas]

The school training issue is a good point. How did you find that person Linda? I wouldn't have thought to look to the state health office.



I called our endo. to see if one of the CDE's or CNE's could train the school staff and they gave me the number of this woman in our State Health Dept. I don't know how she knew the SDH could help. I guess prior schools needing training. But she was happy to come in and in-service them w/ the power point. I could have never done a better job.

[Momof4gr8kids]

We have had great support thus far through our school, and with daycares we have looked at. The one thing is our teacher is so scared of taking care of Julia that unless she has no other choice she wont. Who's responsibility is it? Just the school nurses? Does responsability to make sure Julia is ok, check B/G, help with lows ect...... fall to anyone else? We have 2 nurses for our small distrct, and the one assigned to us is really good about being there when she needs to be, but like today for example our school nurse was the only one, the other was on a weeks vacation. So an emergency came up at another school. Julia checked her B/G by herself, her teacher read the numbers, and knew they were good, and that Julia could have snack, and stuff, but that was only because my cellphone died, and is in the shop and she wasn't able to reach me. I guess it wasn't to bad because she didn't call dad. It all worked out in the end, but it is a scarey thought that it could have gone bad.

[Tamara Gamble]

Hi guys! We contacted the health department and sadly they were of little help in this area but great help in others. We contacted the county, they were cluless to be clear it was Childrens Special Health Care Services.

We contacted the ADA, JDRF, Diabetic Outreach Network (which in Michigan is now run by the kidney foundation), our doctors office and the diabetic educator that worked with us when Tyler was first diagnosed.

Every state and county will be different. It depends on where the state is with it's laws in regards to this matter. Michigan has none so they were useless.

The other organizations were a great asset to us. We had one trainer out already who was pretty good but we have another training session going on with my person of choice from the hospital on Tuesday and I met with her today. She's doing a stellar job as I knew she would. Bringing supplies, saline etc so the DTP's can practice. I found out that the ADA can supply many of the items needed at no cost to the school. Saline, syringes etc. So training is affordable and can be on going as it should be. We are looking into a monthly training session for all DTP's. I would be happy with quarterly. Wait and see what happens.

The problem with most hospitals and doctors offices is that they want the school to come to them. The schools are alot less willing so it's great if you can find someone that will come to the school. Again I think based on the location the services will vary.

Carol, our diabetic management plan contains that information. I have a written statement to the effect that if I am unreachable that they are to contact the doctor immediately and he will assist them in any way possible. I signed, the school signed and the doctor signed. 504: Refer to the diabetic management plan for coarse of action. 911 is first for emergencies of coarse.

Calling the doc is to be done only if a pump broke or an emergency takes place and insulin to carb and corrections need to be done and I am unreachable. Or EMS needs numbers. I better be going through a tunnel or something.

It is not as though they need access to Ty's entire file. Their funcion is a little different than another doctor's so be clear about what they are allowed to have and in what situations they are allowed to have it. It is a violation of federal law for them to be going behind your back and doing things that are not their place to do. Refer to HIPPA laws. Patient's right to privacy act. It's complicated. But believe me, the doc won't go beyond what he needs to. His liceanse is at stake. How do you spell that dang word anyway. Ugh!

I don't know if this is the best way to go about it but that is what I did. The doc has a copy in Ty's file so he can refer to this information. We will have to find out the correct way when we go to training.

God Bless! Tami

[selketine]

I bring up the release form for contacting the doctor because some folks getting 504 plans on the peanut allergy boards have had problems with allowing the school to contact the doctor directly. I think this is during the process of writing up the 504 and not afterwards. I will have to look that up and give you more info on it. The school wanted unlimited past and future access to ALL of the child's medical records, etc.

It does seem that the school has to be able to contact the doctor in case of emergency or they can't reach the parents, etc.

[Tamara Gamble]

Access to all medical records is extreme to me. I think it should be limited to what is applicable in each situation as outlined in whatever plan is applicable at the time. Allergy, disease or whatever. This protects the childs rights for privacy in regards to other matters that have no bearing on the current situation at hand.

I think the doctor needs to understand quite clearly what the situation is and release the appropriate information in accordance with the guidlines laid out by all three parties. School, parents and the doctor. It sounds like the doctors are trying to protect themselves from getting sued because of pt right to privacy act but are taking it to far.

Endangerment of a child could lead to horrible ramifications on all ends. I agree with you that certain information must be made available to the schools at all times. I'll be interested to see what you come up with as this was never in question when we did it. I would have a heart attack if something happened and the doctor refused to help them out with my son.

It almost makes me feel like the schools are afraid of being accountable for anything that could possibly happen to the child and they want the records from past present and future in case there's a law suit. When we go to Chicago I do have some questions in regards to the good semaritans law. That was brought up and I have conflicting feelings because if what I was told is true then, well I don't even want to go there right now.

The new law here in Michigan anyway (don't know how far reaching this is) is that when I sign a release for records the access time is supposed to be decided on as well as the amount of information given. Two months is max for exchange of information. I don't know how this works for the situation that we are discussing as this is supposed to be in place for the entire year for our kids. Huh.

I hope I wasn't pushy or offensive. I am beat tonight and probably shouldn't even be posting. I can't even spell. I think I need to stop. I want to help but my brain is fried today. I hope this isn't to jumbled up and makes some sense.

Talk to you soon. I hope this was well recieved as I am concerned for all of our kids. Especially yours as there are several more issues you will be facing for William than most of us.

Good Luck and God Bless! Tami

[Ellen]

How can we get ADA to find a Congressperson or Senator to sponsor a bill to push for national legislation so all of our children will have the right to check blood sugar in class, take insulin wherever when necessary, have school personnel trained to administer glucagon etc. It's crazy that in 2006, individual parents are forced to reinvent the proverbial wheel on a daily basis.

Equally important is getting Type 1 diabetes to be made a reportable disease so we can have an accurate tally of how many children are being diagnosed with type 1 diabetes. Sampling is NOT sufficient. CDC has resisted. ADA has not pushed for this. The World Health Organization has tried to get the U.S. to push for this. We need accurate reporting to prove how much accomodation is needed.

[EmeeSu]

Our school has a full time nurse - the same one that moved my other son some 1000 feet or so when he obviously had two (and I quote) "misshapen" arms and wouldn't call an ambulance for me. Sorry if I don't have alot of faith in the skills of the school nurse. :(

I am with you Pam. Although my school doesn't have a nurse, the one assigned to us part-time isn't all that well versed in diabetes management. She tries, but I think I know more than she does. One would think that by having a medical degree, one would know more than a lay person. NOT. I then get irritated because they try to talk like they know and end up p*ssing me off to no end! I would rather have a lay person who listens to every word I say and does what I want her to do for my son's care. I have had better luck with that.

[Ellen]

BTW, I REFUSE any access to my child's medical records whatsoever. I also do not give permission for the nurse to contact the doctor unless going through me directly. I have never allowed access to even my son's blood sugar logs. I consistently cross through forms where they request permission and clearly write NO on the form. He checked bg in class all through public school and only went to the nurse if he felt it necessary. He was capable of managing those things. If there's an emergency, the nurse can phone 911.

[pookas]

Just curious, why would you deny access to your childs medical records? Moral reasons, or something else? I want the shcool nurse to know what she needs to know to properly care for Hunter. I also tell her if I'm not available, to call his Endo. nurse or doctor. I guess it depends on the size of the school and how comfortable you are w/ the school and nurse? Just curious...

[selketine]

Not moral reasons - there was an incident (or several) from parents getting 504's for peanut allergy about the school requesting permission to access the student's medical records and talk to the doctor. This was during the 504 process - not after it was signed. I guess some of the parents had problems with this. And in one case a 504 was written without any doctor's note.

It is an interesting issue. I would not want the school calling the doctor during the process and requesting medical records that don't seem to be any of the their business. I don't mind them contacting the doctor if there is an emergency and they cannot reach us.

[Momof4gr8kids]

I think one of the reasons I wouldn't give them permision to call the doc, is if they were to call the doctors office to get instructions they are probaby out dated. Julia changes so much that the school has current knowledge moreso then the doc since I do not call in for every change I make anymore.

Another thing I have learned from having a child with ADHD is sometimes the school tries to take over the dosage, and such.

Because of the expiriences with other children I will never allow my school acsess to medical records, however they have not asked yet for Julia's so it probably wont be an issue.

[Tamara Gamble]

Great questions! Keep them coming! I agree about having to recreate what's already in place at a federal level. The ADA feels it's an added push. I want state laws to push but my concern is that it can get so sticky. Well what about glucagon they'll ask. Federally this is not a limitation. My fear is that things will become limited with too many hands in the pot. But I feel we need something in place because what's there just isn't working. I think that accountability is the issue here.

The State Rep that the ADA is currently working with here in MI wanted DTP's in one of the laws but was limiting it to two. Not enough. He's type 2 and came upon an incident that happened within his county with a child who has Type 1. I don't know all of the specifics.

I do know that the ADA turned it down. It's at the table until elections are over. They felt that it would limit those who were getting a minimum of three and it would be counter productive. They are looking for real people who have real stories to go to the Reps with them to plead the case. How many of us are out there with real stories? Alot!

I am unclear as to what standard policy and procedure is for this proccess with the ADA. I do know based on my experience that the squeaky wheel gets the grease. All of our government officials phone numbers are on the web. As citizens of the United States of America our government is accountable to us for what they do and choose not to do. So make some noise.

I am not going to go into any specifics right now but I am having my own issues with the school. They are playing a tried and true game. I will make a post when the situation is resolved and let you know how it plays out.

I have neglected to call my contact at the ADA in MI but it is on my list of to do's this week. I will find out what I can about college. I will be at the walk in Stoney Creek Park on Sunday. I just was asked and have had so much on my plate that shamefuly I hadn't looked. I will only be registering people at the desk but look forward to see what the day will hold.

Carol, thanks for the help. I'm back! So no worries!

Good Luck! God Bless! Tami

[Ellen]

Just curious, why would you deny access to your childs medical records? Moral reasons, or something else? I want the shcool nurse to know what she needs to know to properly care for Hunter. I also tell her if I'm not available, to call his Endo. nurse or doctor. I guess it depends on the size of the school and how comfortable you are w/ the school and nurse? Just curious...

My son never needed to rely on any school nurse to make insulin dose decisions so we may have been in a different situation than you. When he started preschool, he was on two shots of insulin per day that were both administered by me at home and he checked his own blood sugar and wore an alpha numeric watch that reminded him to check bg or eat the packed snack or meal etc. The summer before second grade he started on a pump and became quite adept at handling it over the summer, and I worked at the school for the next couple of years and was able to help him determine doses for the school lunches. Thereafter he managed well on his own and learned to guess the carbs well and bolus and correct later if necessary.

I personally don't like anything to become part of an "official record" unless it's positive like an award. My son's medical records are private and none of the school's business. I never wanted any labels with respect to the diabetes or blood sugar control to be in the record. We have had an awesome ped endo who has been there for us whenever we needed her and his care has been top notch.