Tonight 8/30 Back to School Chat

[Ellen]

Wednesday
Aug 30Back to School Chat with ADA School Advocate Crystal Jackson
9pm Eastern
Back to School Room

www.childrenwithdiabetes.com/chat (http://www.childrenwithdiabetes.com/chat)

[hold48398]

Bummer, I missed this. Would have loved to join in but I was out tonight. Is there any way we can get more advanced notice? Thanks, Ellen!!

[Tamara Gamble]

I'm bummed, I missed it too! Tami

[Ellen]

The chat transcript will be posted here: http://www.childrenwithdiabetes.com/chat/transcript/

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[hold48398]

Thank you, I have signed up for this now.

[twicker1]

I wish I hadn't missed it either, as I can't seem to get any help from our local ADA chapter. When will she have another chat?

[selketine]

Tuesday,

The chat is up from last night at: http://www.childrenwithdiabetes.com/chat/transcript/BackToSchool20060830.htm

Towards the end of the chat on the transcript you'll see that Crystal gave her email address if you want to contact her. Perhaps she can give you a direct contact there in Texas. And she may have links to TX info I don't know about.

I know in this document from Texas: http://www.dshs.state.tx.us/schoolhealth/pgtoc.shtm

See especially this chapter: http://www.dshs.state.tx.us/schoolhealth/chap7.pdf

Look on page 342 for the actual mention of diabetes and 504. This is the section where it talks about 504 plans. This is page 342 of the actual document itself (and a different page of the PDF because the PDF is broken into chapters).

Here is a quote:

"Diabetes, seizure disorders, and asthma or chronic allergies are just a few examples of physiological disorders that can place affected students at risk for severe health problems and/or emergencies. Blood sugar fluctuations, asthma, or allergy attacks, and seizures are events that impact "major life activities" as described above. Reasonable accommodations can, and should be, planned and documented in a "504" plan by the designated "504" case manager in each scohol district The written "504" plan provides for clearly understood and accepted interventions that support the child and school personnel. ......"

What problems are you having there? Refusal to do the 504 or some other issue in the 504?

[twicker1]

I have read everything I can get my hands on, but that is not the problem. The problem is how the school district interprets the laws. I hate repeating this so many times because many of you have probably seen me rant about this before, but the school is trying to say they are not responsible for certain things.

First, they do not think they are responsible for sending someone trained on field trips. They think that having someone aware of lows and how to treat them is enough, but it is not since he is on insulin and will need it. Also, what about the Glucagon? The 504 coordinator also "suggested" that if his numbers were fluctuating, then maybe I might not want him to go anyway. They also made an issue out of having the nurse attend, or having to hire a substitute if she or the UDCA went on the field trip. I assured them that I PLAN on attending, but if I am sick, or he gets to an age where he doesn't want me to go then the district needs to be prepared to send someone. They said that we could worry about that when he didn't want me to go, and I said no, I wanted to set a precedent now. I didn't want them to come back 4 years from now and say everything went great when I was there. They are stating that it has been their "interpretation" that they are not responsible for off campus activities and the parents usually attend. People have told me over and over that they can't do this, but I am having a hard time finding the LAW/LAWS that back this up. Something that can NOT be MISinterpreted.

Second, the principal has an issue with him checking his blood sugar where other children might see him. She is afraid that one of them might go home and try to stick themselves with something, OR they might think they might have to get shots, OR they might not like the sight of blood and get sick or start crying and cause a disruption. It took everything for me not to laugh in her face! He did this all last year in a class of 4 year olds. Her response to that was that he was in a private school where the children had more parent involvement and affluence and a lot of the children here don't have that much supervision or involvement from parents. I told them to let us teach the class and they will know what is going on. Also, my main objective is to protect him in the event of having to check BG during a fire drill, field trip, or if I am present at a school party. Otherwise, we have a plan for him to go to the nurse at certain times of the day. She agreed as long as it stated that he could check anywhere on campus ONLY during special activities as those I listed above.

The last thing, and the part that really ticks me off, the lady over all the district nurses made sure to point out that there may be occasions where both the nurse and UDCA may be off campus due to illness, etc. I said then they need to find someone else. She said that may not be possible, and "if his sugars aren't stabilized" then I might want to keep him home that day. Again with the "not stabilized" and "fluctuating" numbers thing! I pointed out that first of all, I would be the one to determine if his numbers were "fluctuating" too much, and second, why should he have to stay home? This is public school!

I have written an email to the Office of Civil Rights, the JDRF, and have left two messages over the past two weeks with our local ADA chapter. I haven't heard back from anyone. The school is supposed to be checking with their lawyer to see what they are responsible for, but I want my own independent answers in case they come back and say they don't have to do any of it.

I know they have to follow the 504, but you have to first get them to AGREE to it and sign it.

[selketine]

I understand your frustration. It would be simpler if it was just spelled out clearly in some federal law that diabetic kids get a 504 and here is what is required - blah blah and blah!

I find I have to look all over the place in different documents. Plus there are state and local documents - some kids have easier times getting their rights.

I would copy and paste what you just wrote and send it to Crystal as TX is supposed to have passed some better laws.

I agree that they have to provide someone for all school sponsored trips, that they can't tell you to keep your kid home on the days no one is there to treat him (!!!) and he does need to be able to check anywhere. How come this: http://www.dshs.state.tx.us/diabetes/PDF/HB984.pdf isn't enough proof that he can test anywhere? I think if his doctor says he is allowed to self-test he can. But I am a bit confused - he is too young to read and interpret the reading right? So someone has to supervise the test. Do you want him to self-test and report the number? Or have him self-test with the nurse present in the classroom or ?

[twicker1]

I copied my earlier post, attached the 504 I typed up and sent it to Crystal.

Yes, he is too young to self-manage. I just want it in the 504 that he can be tested at any location on campus, field trips, etc. They are concerned about another child witnessing the test. If I am there for a class party and have a meter in my purse, then I don't think I should have to take him away from the party to the nurse's office to test him. Right now, he goes to the nurse before lunch for BG, after lunch for shot, and before gym for BG. I just don't want him confined to that should situations or circumstances arise.

HB 984 is a huge step for diabetics, but the head of school nurses has made her own interpretation of the law. It never ACTUALLY states that the nurse or an UDCA MUST attend on a field trip, only that "reasonable accomodations" must be made. And the reasonable accomodations do not cause undue costs. I think they see having to hire a substitute as "undue". They are only looking at the section that applies to persons transporting or supervising the child, and that section states that they only need a one page care sheet with high and low symptoms identified, what to do in an emergency, and contact numbers.

I am hoping that their lawyer is not stupid and "loosely" interprets the law. I mean, how can it not be discriminating when he wouldn't be able to attend if he didn't have access to insulin and emergency treatment?

[selketine]

Got it on the testing thing. Yes you should be able to test anywhere - you or the nurse, etc.

I am interested in what Crystal says - let me know. I guess you may have to contest this interpretation of how field trips are handled and let higher powers than the nurse decide. I still think that you will ultimately prevail even if it isn't right away or by the time for the first field trip - but it will get you where you want to be for the future. I think Crystal is very interested in how the laws get interpreted and wants to work to make sure they are not misinterpreted! At least the field trip thing is more of a side issue - not an every day care issue.

I am more worried that they would expect you to keep your child home on days that the nurse isn't there. That seems flat out wrong - I would not agree to it at all. Even if the school has to hire someone to cover for that day (don't they have floating nurses? on-call nurses? maybe they'll have to hire some!).

[Tamara Gamble]

Hey, Carol great info.

Listen, law in part is interpretation, you can tell this is how the school attorney is telling them to cover their butt, they have indeed been in contact with him/her. However it is very clear that the intent of the law is more important. You need to let them know this. Again, it's the intent or spirit in which the law was created that it is to be followed. This would stand up in a court of law and they would lose, period.

Our federal government created the laws with clear intent to allow for all children to have equal rights in and out of school as well as be in the least resricted environment as possible and a safe environment. People like the one's your dealing with are the reason these laws are created.

They cannot deny your child his/her rights! They must make a reasonable accomodation for your child that would include but is not limited to having a DTP on staff and available at all times. To accompany your child not only on field trips but also to cover them if they are involved in any extracurricular activities having to do with school.

As far as the blood testing goes their reasons they give are utterly bogus! The truth is that if the child is not self managing they unfortunately can set the rules as far as where the child tests if they are making reasonable accomodations and it is followed. Although, if you took them to court on this I can almost gaurantee you would win. (just a side note)

However, if I had a young one, I may fight for an OHI so that he/she could have an aid if needed or additional accomodations could be made above and beyond the 504. They get money for this so if the nurse or her partner in crime(the other DTP) is to spent to do her job it wouldn't matter your childs needs would be met.

Your child could be eligible for this with type 1 only. A learning disability is not necc for you to get it. Although you will be told otherwise. You just have to prove that they are not self managing to a degree and need assistance above and beyond what the school is currently providing. They have already admitted to being incompetent, unwilling, however you choose to see it so this shouldn't be a problem.

The ADA can be a little frustrating with direct questions some times but what they do have is a discrimination package. It's free. You just have to request it. Alot of information that you're looking for is in there. They even give you the phone number if your child is being discriminated against and the procces for resolution. They'll come in and take care of it for you.

It is clear discrimination to deny a child the right to participate is something their peers can freely because a DTP is not available, that is to include any field trips and they have to make the accomodations. You do not have to attend. They can't go because they have a chronic disease and we can't provide anyone to take care of him/her, is clear discrimination regardless of how you interpret the law. You can say it five different ways and it's still discrimination.

They think that by throwing what their attorney say's in your face it will freighten you. Been there, done that. They think that you can't afford an attorney that will beat theirs. They're dead wrong! These are civil matters and if you make that little phone call it is my understanding that all of a sudden you have a civil rights attorney appointed by the government at no cost to rip their very tiny local one to bits.

If they lost in a court of law which they would they could be forced to pay heavy fines not only to your family but also to organizations designed to educate the public about diabetes as well as make the neccesary accomodations.

Ideally, you don't want any of this because your child has to go to school there. But now you know and can politely let them know you know and proceed from there. Parents aren't the only one's who can be charged with child endangerment you know. Schools can too.

Even though I sound like a tyrant I'm not. I just had really bad experiences last year like you are this year. I made it my job to know everything that I could before I went it. I went in before the meeting this year and talked with the principle, I even gave him the sample of my proposed 504 and DMP. I tried to educate him ahead of time so that he would understand the need and dismiss any attempts made by others to detour me from getting what I needed for my son. It worked. Had I been dealing with the principle from last year we would have been in court.

Like you I never wanted this and expressed that it didn't need to be this way. I tried really hard to take the high road and offered to help them devise a plan not just for Tyler but for all that come behind him. Unfortunately, so many people just look out for themselves anymore it's rediculous. I wonder when our children became so unimportant to the schools. we pay to give them what they need to become educated, healthy, well rounded individuals. What makes me really mad is when they understand the need and try to skate around it to cover their butts. Most of what we encounter is lack of education. People can be taught.

I fought for my son's rights about seven years ago and won. This particular situation involved speech and language not diabetes. I got my hands on the childs and parents rights manual, I typed out all of the offences and used all of the coding for the law to prove utter neglect and abuse of possition. I enlisted the help of an Advocate because I had no idea what to do initially and needed to get educated. I just knew what they were doing was wrong. I stated my possition and stated what I wanted. I handed it to the principle, the teachers involved, the super and the board of ed. Before I got my last copy handed out. I was being begged to stop the proccess and was given all of the accomodations I needed for Ty. He was given a whole new IEP, a whole new teacher and a whole new set of rules.

At that time I let the principle know that I hadn't wanted it this way but she had ignored my requests in the past etc. She let me know they would be trying to fire the teacher involved. Unfortunately, there was a loop hole and she was still on staff but she was not longer my concern at this point and was now under the microscope.

You are not helpless. Be educated, be bold. You will get this done. Maybe not tomorrow but soon.

Good luck! God Bless! Tami

[Tamara Gamble]

Okay, this one will be short. Reasonable accomodations is having a DTP there.

The key here is that once the school is informed in writting that there is a need for a 504 they have thirty days to completely execute the plan. What will their excuse be for not having done this? What? They wouldn't sign it because of their interpretation of the law? Get it in writting. If in thirty days it's not complete they are then in violation of federal law and stand to lose all of their federal funding ie shut down! There's some leverage for ya!

Good Luck! Tami

[twicker1]

Thank you so much for the information. If not anything else, you have giving me many useful phrases to add to my ever growing vocabulary in dealing with all these morons! I was not aware that there was a definite timeline in which a 504 had to be completed. I had heard of a reasonable time, but not the 30 day limit. However, I never requested a 504 in writing. We all met last Thursday, and today marks one week. I am, however, kicking myself in the behind for not bringing a tape recorded to the initial meeting.

Yes, I understand that since he is not self-managing that they can set a place for help to be administered, but I was more afraid about them forcing ME to take him to the clinic to do BG checks if I was there for a party, if he needed to be checked during a fire drill, or on the bus on a field trip. Kinda hard to eliminate other children seeing. I was confronted the second day of school by the principal, because I checked him in the classroom. I was up there the entire day since no one had even told his teacher that she had a child with diabetes in the class. Bless her heart, this is her very first teaching position. I know this may sound trivial, but I want to pave the way for when he is older. Might as well get some things accomplished now. I will be sure to keep everyone updated, and thank you again!

[twicker1]

I posted this in another thread, but I did want to brag about something the school initiated. They came up with "Code Sugarbear". If Brandon should pass out the teacher would hit the emergency button to the front and call for this code. The nurse then knows to grab his box - snacks, meter, and Glucagon - and rush to where he is. As a matter of fact, the principal, who I don't like, came up with the code name.

[Tamara Gamble]

Make sure your 504 states that in the event of a lock down, fire drill, tornado drill etc that the 504 remains in full force.

They must accomodate him regardless of the situation. The sneaking around bit is garbage. That is discrimination. What will they do if he is on the bus? Tell him to wait until all of the others are dropped off to treat him? They can enforce the self management issue but they cannot deny him the right for proper care and treatment as it is laid out in his 504 and by his diabetic management plan which should include specific times for testing as well as when the child is symptomatic, treatment etc. This could happen at any time and it needs to be taken care of right then or it's life threatening. If they are refusing again it's a civil matter as well as child endangerment.

It would be far better for them if they cooperated here. The bottom line is that if your child dies because of their neglect they aren't going to get a slap on the wrist. This is what it comes down to. Either they have to do what is neccesary or the child will die period. This should put it into perspective.

I don't envy you at all right now. I want to wring their necks for you on this. I told them that I no longer work and would be happy to be at school all day every day if that's what it took. This was last year. This is a new year and a whole new scenario now but believe me they didn't want me around critiquing every move they made at the elementary. I was clear I wouldn't be there to treat Tyler, they would be, I would just be watching. (and they knew waiting)

Sad it has to be like this. There will come a day when things are different because of parents who are jumping through hoops to make it all happen like the one's on this board. I just wish it were sooner than later.

The sugar bear name is cute but not enough. If they think this will get them off of the hook because they thought of it, they're dead wrong.

I'm going for the red and green card deal when Ty test's in class. He's in junior high so it's a little diff.

Good Luck! God Bless! Tami

[selketine]

I am not sure that it is the same in every state or school district for the deadline the school has to complete the 504 - or hold the meetings, etc. I've read in some state policies that they had 25 "school days" to respond (i.e. set up the meeting). I've just not ran across much info on that. I'm sure there has to be a limit though - they can't drag it out forever.

After thinking about what you said about you being able to test your child anywhere on campus it makes me think about when I bring William up to the school if we are doing something there with my older son who attends there now (4th grade). I've often tested William there - during school functions like parties and award ceremonies and after school things like the ice cream social, bingo night, etc. I can't imagine someone telling me I couldn't test him - LOL!

[Tamara Gamble]

Yeah, You may be right. I thought about it while I was gone today. I'm from Michigan so it may be different but you need to look at deadlines for 504's not specifically diabetes they may not have it outlined for individual disease. I spoke with the woman in charge of special education in the state of Michigan. She told me they have thirty days from the time you write the letter. She also stated they had to be in session. So you can't write the request in June and expect it to be done in July obviously. At least not here. But there has to be a deadline. It still packs punch.

Good Luck! Tami