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Posted on: Tue, 04/06/1999 - 6:22pm
LauraP's picture
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Joined: 03/10/1999 - 09:00

Hi Janet!
This is in reponse to this thread and your post under the Food Allergy Management Plan. Here are some things to think about on the transportatin issue. Sending your allergic child to school on a bus involves two separate areas of concern:
1. Risk prevention
2. Proper treatment.
RISK PREVENTION
How do you prevent risk of exposure on a school bus?
a. You adopt a no eating policy
Your school has done that.
b. You limit the number of children on the bus.
The small bus is one way to do this.
c. Your child gets his or her own bus.
This would be the optimal way to reduce risk. If the school says they can't do this, remember that in school terms "can't" means "we don't WANT to". Yes, the school can provide your child with his or her own bus. But this costs money. They will not volunteer this suggestion!
Are you satisfied with the proposed measures taken by your school with respect to risk prevention? If not, you may want to request the separate bus (they may tell you no). *This is something which could be pursued at a due process hearing.....I'm not sure you'd win on it, because the small bus does seem to be adequate to reduce risk.
PROPER TREATMENT
All the risk prevention in the world is useless if proper treatment isn't available.
1. The school puts in place an emergency radio dispatch plan. That is a start. O.K. So, now your child is riding on a reduced risk bus, with no medical treatment available. Is this satisfactory? Probably not.
2. The school has a "no drug" policy. It seems this policy was made to be broken! Here are some suggestions. Perhaps an extra epi-pen kit can be kept on the bus at all times. Or, perhaps your child can carry a "locked" epi-pen pouch in his or her knapsack, and a Key to it can be placed on the medic alert bracelet or taped to the bus dashboard (if they are concerned about your child self-injecting by accident, or having some direct access to the drug). Epi-pens are not an illegal drug. This is prescription medication.
I'm thinking of children allergic to bees. Maybe if you use this as an example for the school, it will be easier for them to visualize what we are dealing with than to imagine an airborne or contact peanut reaction. If a child allergic to bees is riding on a bus, there is a risk of being stung every time that bus door opens and closes, as insects can fly in (especially in CT - the yellow jackets are all over the place)!. To have such a child on a bus without epinephrine would be crazy. Same is true for the peanut allergy.
If the school still refuses to budge on the epi-pen on the bus, contact the State Department of Ed again about this. See what they say - if they can offer any support on this. If not, * due process hearing time again!
O.K. Say the school sees the light on the epinephrine issue. Now your child is riding on a risk-reduced bus, with medication available, but no one to administer it. I see three solutions to this problem -
1. Your child can self inject (when they are older). But this isn't always a good idea. Reactions can happen fast. There may be no time to self-inject. Confusion and lack of coordination can set in. Someone else has to be prepared to use the epi-pen.
2. The bus driver receives training in treatment of anaphylaxis. I'm not certain just what kind of control the school has over the bus drivers. (I don't know if they are considered employees of the school, or employees of their dispatching company. I'll find out). The bus driver may not be willing to take on this responsibility.
3. The school hires a monitor to ride on the bus with your child (Again, if they say they can't, it means they don't want to spend the money to do this). *This would also probably lead to a due process hearing.
Remember, you do not have to sign the 504 plan until you are 100% satisfied with it. That means 100% satisfied with the busing issue. There is a down side to the Due Process Hearings. If you wind up taking that path, the smiles you received on the 1st will quickly turn to frowns. The school will now label you a "problem parent". You're entering the realm of costing them money. Legal fees. Big ones. If you even mention due process hearing, the school will start doing the math -- if we give her what she wants will it cost us less than the hearing? If so, you may get that separate bus and the monitor, AND the right to have the epinephrine on the bus (that doesn't cost them one red cent)!
In any event, that's about all I can think of on the busing issue. Should you find yourself in Due Process Hearing land, feel free to e-mail me, and I'll fill you in on how that all works. I take it the school provided you with your sheet of procedural safeguards? Keep us posted!

Posted on: Wed, 04/07/1999 - 12:13am
LauraP's picture
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Joined: 03/10/1999 - 09:00

Hi Janet -
Just spoke to my dad (the retired school district superintendent) about this whole thing. He thinks it is quite clear that the school is not meeting it's duty to assure your child can attend school safely. Riding a bus without prescriped medication is a very unsafe thing. He's inclined to think the school will back down, and let you have your epi-pen on the bus, someway. He also sees two possible scenarios for the administration of the epi-pen. The bus driver, or a school-staff monitor. Neither would really cost the school a heck of a lot. The bus driver may or may not be under the employ of the school - it depends on your school district. Or, the school could make some arrangement to have some already staffed person ride on the bus with your child.
My dad says schools hate to go to these hearings. This thing could wind up costing them 20 or 30 grand. His gut feeling is they would lose on both the medication issue, and the monitor issue (i.e., you would get what you ask for ultimately). The school would have to reimburse your legal fees if you win. He says just the suggestion that you want to go on to a due process hearing should be enough to make them see the light - that they are on the losing side of this issue. Hope this helps!

Posted on: Wed, 04/07/1999 - 12:47pm
Janet Laflamme's picture
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Joined: 02/08/1999 - 09:00

Hi Laura,
Thanks for all the suggestions about the transportation issue.
Here's some further details about our April 1st meeting about the transportation issue.
My husband and I were satisfied about the smaller bus or van and the shorter ride.
When I asked about a transportation aide (citing in CT's "Serving Students with Special Health Care Needs" pages 55 and 56 which states basically that the bus driver although he should be prepared to deal with a true emergency he should never be used to provide routine or intermittent care. The driver's primary duty is to transport all students safely with no diversion of attention. It also states that it is appropriate to use transportation aides when one or more students require specialized health care on an emergency basis only and the school nurse determines the aide can be taught the emergency intervention.) I was told that since the epi-pen involves an injection that only the principal, nurse, or a teacher could administer it. They could not train an aide or a driver to do it! It took my sister 3 direct questions asking who had the power to authorize an aide for bus before we got a straight answer. The school board has this power.
We also asked if we could put a safety sealed fanny pack ( I put a metal grommet near the zipper and used a plastic seal like those used to show if a fire extinguisher has been tampered with. When you unzip the pack the plastic seal breaks easily and you know if anyone has opened the pack.)with the driver so our son could either self-inject or if an EMT arrives before paramedics they could help our son inject the medicine. Basically all we want is for the epi-pen to be with our son to at least give him or whoever is with him the chance to use it. The nursing supervisor said no she doesn't allow bus drivers to transport drugs. Apparently some parents were using drivers to drop off meds such as Ritalin and supposedly it took her 3 years to stop this practice.
So I guess I'm going to draft another letter to the school board members requesting a transportation aide. I'm also going to try and get an exemption from the nursing supervisors policy about the epi-pen being on the bus at the next meeting. If she stonewalls me I 'm going to mention going to the due process hearing.
It's amazing to me the lengths we must go through to get the necessary precautions in place!

Posted on: Wed, 04/07/1999 - 5:39pm
Sue's picture
Sue
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Joined: 02/13/1999 - 09:00

Hi everyone,
Thanks for all the great info on the bus ride and the EpiPen. I think that the one thing I have learned in dealing with our daughter's school district is that they will only do what they are forced to do. I am not going to fool around anymore with all of these meetings with all of the same people.
I think I am really going to ask for a due process hearing after one or two meetings on the same subject instead of draging every issue out for months, as has happened in the past.
Please keep those posts coming!!
Sue

Posted on: Wed, 04/07/1999 - 8:25pm
LauraP's picture
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Joined: 03/10/1999 - 09:00

Janet -
Baloney, baloney, baloney. They sure are laying it on thick. I do need to know if they sent you those procedural safeguards. I'd say e-mail me, but we should probably continue posting all about this, in case someone else encounters it
Anyway, I'd advise you to direct your letter to the principal. and then cc all the board members, and all the people who were present at your first 504 meeting. You know, ANYONE can use an epi-pen. The State Dept. of Ed. has no mandate saying it has to be the principal or the teacher. This is your school nurse talking. She better change her tune! (I'm sure that if and when you come down to mentioning the due process hearing, the principal will sit her down and those "policies" of hers will change).
Maintain a polite, but firm tone in your letter. Did they have another meeting set up with you? If so, don't mention the due process hearing...... yet. But I'd suggest you throw a few legal sentences into the letter you are writing now (so they know you are serious, and may suspect you already have an attorney helping you on this). You can start out about how nice it was to meet with them, and how glad you are that they addressed with concern so many of the issues your child will be facing, blah, blah, blah. Then say "My husband and I however, are not entirely satisfied with the outcome of the meeting. We do not feel your proposal for handling the busing issue adequately provides for my son's safety while travelling on the school bus. While the smaller bus and reduced number of children may reduce my son's chance of peanut exposure, the proposed plan fails to address the treatment issue. In fact, it directly conflicts with and disregards medical directives for my son's life-saving medication to be with him at all times. My son must be permitted to have his medication on the bus, and someone must be made available to administer it (or something to that effect). Then request the monitor (you know, anyone who is already on the school staff can serve as a monitor - they don't even need to hire a new person for this. Heck, the principal could take that bus ride)!
Of course, this is just my one legal opinion on this. You can feel free to disregard my suggestions and do your own thing! Keep us all posted.
[This message has been edited by LauraP (edited April 08, 1999).]

Posted on: Thu, 04/08/1999 - 12:13pm
Janet Laflamme's picture
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Joined: 02/08/1999 - 09:00

Laura,
I was given two things at the meeting on April 1st. A "Student Accomodation Plan" which described the nature of the concern, the basis for the determination of disability (Doctor's diagnosis), how the disability affects a major life activity, and describes the reasonable accommodations that are necessary (I was given an updated Individualized Health Care Plan with the changes I mentioned in the previous posting). It hasn't been the school nurse telling me what can and can't be done it's been the nursing supervisor for the Norwich Public Schools. She is the individual with whom I keep crossing swords so to speak. She repeated at least twice that they were ready to go with the new transportation the next day if I agreed with it. I stated that I was going to pursue a transportation aide through the school board and that I needed to talk with my husband and think everything over before I made any decisions. We scheduled a second meeting to go over the revised draft of the IHCP and to discuss any issues that were not settled.
The drivers for the special ed. transportation I believe are employed by the school system not contracted like the regular buses. (I'm not 100% sure on this and plan to check on this.)
You stated that the St. of CT has no mandate on who may administer the epi-pen. I'm going to call Nadine Schwab who I found is the most knowledgable person about these issues at the St. Dept. of Education and question her further about this issue. We discussed many things in a recent 30 minute phone conversation and I believe she did say that only the principal, teachers, and nurse may administer the epi-pen. She made some phone calls on my behalf when I explained the lack of knowledge that was apparent to me in the nursing staff about the sensitivity of some allergic individuals. One of the questions that kept coming up in a previous meeting was the fact that my son has never had an anaphylactic reaction to peanuts. The background is this- we rushed him to the emergency room when he was 1 yr. old when he tried milk for the first time and his mouth swelled and he got hives on his face. We then found out slowly through trial and error that he was allergic to citrus(hives all over body), egg (mouth swelled and hives) and maybe penicillin(rash all over body).We weren't referred to an allergist. Our ped. gave us the epi-pen and I researched. I knew peanuts and nuts were terribly allergenic and we decided not to let him try them until he was 5 years old. Well his preschool let him touch it to make a bird feeder ( they didn't tell me about it ahead of time). They said they watched him carefully because they knew he wasn't supposed to eat it. Well his eye and the side of his face swelled up and that side of his neck swelled up. We went to the allergist and had our worst fears confirmed peanut allergy and tree nut (cashews) allergy. None of which he has EVER had to eat! So I don't think there is much question to me that some sort of bad reaction would happen if he INGESTED them. The school system apparently has never had such a sensitive child in their care (I find this very hard to believe after all the information I've read). So they don't want to go to the extreme end of caring for him and that's why I think I've had to push so hard.
Take care,
Janet

Posted on: Thu, 04/08/1999 - 9:02pm
LauraP's picture
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Joined: 03/10/1999 - 09:00

Hi Janet-
When I spoke to Nadine (this is going back about 2 years), she told me the state requires adrenaline to be administered. As to who administers is - that is left up to each district to determine.
Nurse or nursing supervisor, doesn't make a difference - this person is not responsible for implementing policies.
As for the reaction thing, I have a similiar situation with my son. He has no known ingested reaction to peanuts. However, if you have had all the appropriate testing done (skin test and blood work), a history of a contact reaction, and a letter from an ALLERGIST stressing that contact or ingestion WILL BE problematic for your child, the school should be satisfied with that. Like you said - if contact caused what it did, you can be sure ingestion would be worse. Your allergist should state that..
I'd say continue with your letter as planned. In the meantime, I have a contact at the American's With Disabilities Act Coalition (a free advocacy group for people disabled under A.D.A). I'm going to see if I can find out where we can access the decisions in due process hearings in this state pertaining to medication administration and peanut allergy (if there have been any yet). When you speak to Nadine, ask here if she knows where we can find these decisions.

Posted on: Fri, 04/16/1999 - 10:18am
barb's picture
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Joined: 03/11/1999 - 09:00

Hi all,
My daughter is in 3rd gr. The bus issue. I have chosen to drive my daughter to school, instead of taking the bus. I ran out of energy training everyone. I tried to pick my priorities. What I saw and heard was that the bus is a lively place. I try to assess situations with eye for REALITY AND RISK. As a stay at home mom, this was not a dilemna.
For those who do not have a choice or choose to ride the bus, a couple of ideas:
1. The nonsense about carrying meds is just that. 504 allows an individualized plan for the needs of the child. It can be written into the 504 plan that you have meds with you at all times for life-threatening conditions. Diabetics have open access to food at all times, so that they don't get a low blood sugar. Children with tracheostomies (tube into the trachea) carry suction equipment with them everywhere. Aides instill saline into trachs and suction in schools. Schools can administer oxygen. This is similar. These are examples of accommodations that 504/POHI can help with. The medication thing is FEAR and CONTROL. (Don't we know about those topics?)It must be framed as what is NEEDED IMMEDIATELY ON HAND AT ALL TIMES. If you act like it is negotiable, then how can they understand that it is not? STAND FIRM. DO NOT NEGOTIATE ON THINGS THAT ARE NOT NEGOTIABLE. Which means you must figure what YOUR BOTTOM LINE FOR SAFETY is and how much effort and energy you have to deal with the issue.
For us, it was EPI with our child everywhere, assigned person trained to give epi in all environments, aide and accommodations in the cafeteria, no peanuts in the class (even tho' this is in reality risk reduction), cell phone for field trips and aggressive management by school administration in the event of harassment. Remember, to pick your battles. Know what you can and can't negotiate on. Don't expect schools to know that. If they want the teacher or bus driver to carry epi, I could go with that, but only for K and Gr 1. By Gr. 2, I would want my child starting to learning that they, not the teacher, must be the Epi carrier. BECAUSE the goal, if one has some vision, is that you AND the school want the child to learn the HABIT of being responsible and keeping EPI on their person. Teens have died in school, because they fail to carry epi. You must SELL the school that you have their interests at heart also. Responsibility learned EARLY will decrease school's and child's risk LATER.
2. You can ask for designated seats on the front of the bus. BUT, the school is responsible to be able to handle an emergency, and that means TRAIN BUS DRIVERS. It is not impossible. Schools systems offer CPR training for personnel, and Epipen training can be linked to this. A 2way communication system is fine, but not the same as TRAINED BUS PERSONNEL. A child can sustain lack of oxygen to the brain while the bus driver waits for the amb. to arrive. And the Ambulance may or may not have epi, depending on your local EMS practices.
3. Some schools have spec. needs buses, whic have monitors on them. But they also may have children with behavioral special needs as well. So you have to consider, do you want your child on a special needs bus; and, if so, what type of supervision is available.
4. We did not do any of this the first time! LOTS of trial and error. But one very important thing I have learned is: DO NOT NEGOTIATE ON NON-NEGOTIABLE ISSUES. And that means it takes a LOT of your time. But actions speak louder than words!! I went to school for first grade lunch everyday for 3 weeks until they got an aide for my daughter. But it was not negotiable. Someone had to be responsible in the cafe. if she was exposed and it could not be the one foodservice woman who also served the food.
best of luck. I am sure we have new challenges awaiting us next yr. [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]

Posted on: Tue, 04/20/1999 - 2:09am
barb's picture
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Joined: 03/11/1999 - 09:00

Hi Janet,
Hang in there! you are making a difference for not olny your kid, but those that follow. I am sorry the nursing Supervisor is an OBSTACLE. That is a tragedy! Their Professional code of ethics states that they should adovcate for the individual needs of the patient! They have forgotten something about who their first and foremost obligation is to--the patient!
They have chosen to focus on the schools and legal concerns first. If they would focus onthe patient first, the other issues would fall into place. You will just have to blast the nursing supervisor out of your way. The American Nurses Association has a position paper on Ethics, I believe the site is [url="http://www.nursingworld.org"]http://www.nursingworld.org[/url] or com. Remind her of her Professional Code and ethics. Use the professional ammunition. And remind her BOSS.
Another possible angle is to call the School Nurses Association. Ask for someone at the top. This supervisor needs some education and help.
She is making your job hard. the school will listen to her, until you can PROVE that she does not know what she is doing. That puts you in a crummy spot. But others have had to do the same thing. you have to get past her as the school will listen to her until it is clear that is unwise. You get to be the one who either educates her or discredits her. I have had to do similar. I did not have to pursue the legal/due process route, but I did present the asst superintendent with evidence that i knew what I was talking about and the nurse did not. So now the asst. superintendent and I are friendly and the RN and I are simply polite to each other. [img]http://client.ibboards.com/peanutallergy/wink.gif[/img]
As you can guess, I am in the nursing profession and this makes me furious.
best of luck!

Posted on: Thu, 08/19/1999 - 11:21am
Janet Laflamme's picture
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Joined: 02/08/1999 - 09:00

Well, after almost a year or letter writing and making phone calls all over Connecticut my son will be riding a special ed. bus with the epi-pen on it. He will be the last on and the first off. An adult must hand the meds to the bus driver who will hold it and pass it to the duty teacher at school to pass it to my son's teacher for the day. Now the epi-pen will be available to whatever medical technicians arrive in case of an emergency. The bus driver will NOT be allowed to administer it - only hand it to EMT's or Paramedics.
My letters were directed to the local and state school board, the superintendent, the president of the local City Council, the head of the local health district, and state representatives. I followed up with phone calls and any information I thought would educate them about the situation. The local newspaper even carried a story about the need to change the law so EMT's in CT could be trained to carry and use the Epi-pen.
Right now my son is looking forward to school and the bus ride. Another bonus--a new principal who has already stated that there will be 2 duty teachers in the lunch room so no more parent volunteers only, who haven't a clue as to individual childrens problems. Hurray for some stability!!!

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