posted
One of my daughters has lyme. She just entered middle school and I was told I should get a 504.
She currently sees Dr. H's PA in Colorado who in my opinion is not the greatest doc at all.
After talking to this PA, the school nurse came up with a plan. Here it is:
Allow ____ to limit her activity as she needs too.
If she is experiencing joint pain some physical activity may be more difficult for her and they may need to be modififed on some days.
Allow her to rest for 10-15 minutes at her desk, when she says she is tired.
One of my daughters biggest complaint has been her stomach. Her LLMD PA can't seem to address that at all. Keeps wanting to give her prescriptions that my insurance comnpany won't approve.
When I've asked this PA to call the insurance company, that's what Aetna keeps requesting, she will not.
My daughter recently missed two days of school because of what I think was related to lyme. Severe stomach issues. One of her class grades feel to a C.
The form that the school nurse wants me to sign doesn't even say 504 on it.
Could someone please tell me what I need to do to protect my daughter? Last year she missed so much school, I received a letter from the school district warning me.
Since her stomach is one of the main complaints, I want to make sure that it's some how mentioned in this plan.
How have others dealt with absentism? Was that listed on the plan? This form is listed as a Heatlh Care plan.
Posts: 911 | Registered: Mar 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
A health care plan is not a 504, and doesn't carry the same weight as a 504.
I pm'd you some info.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Up anyone else?
Posts: 911 | Registered: Mar 2005
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Shosty
Unregistered
posted
I think the previous poster was trying to say that an IEP provides more accommodations, and wrote 504 by mistake, but I can't be sure.
I recommend a 504. It is quick and easy, only requires a doctor's note (no evaluation or big meetings), and you can write it yourself, bring to a brief meeting, and have them sign it. Then, they are obligated to follow it. It really does have teeth, and can be enforced by the Fed.Dept. of Education's Office for Civil Rights, easily reached by phone.
First, write all the accommodations you want. We had all the accommodations the previous poster mentioned, in a 504, not an IEP-except for the resource room.
Then, have your doctor or the PA sign a letter on their letterhead, with those accommodations listed on it. Give that to the school.
Third, write a 504 plan with those accommodations on it. There is no standard form. Make it offical looking, by putting, on the top, "504 plan for_______", school, grade, your child's birth date, and at the end put the principal's and nurse's names, or whoever, with lines for them to sign on- as well as you, as parent.
Your school cannot penalize your child for absenteeism due to an illness documented on a 504. In fact, your child deserves help in keeping up. Some get tutors. We never asked for tutors, because we could not anticipate when our child would be feeling best to work with a tutor and also, by NOT asking for that, we got a lot of cooperation. Tutors cost money, and the things we asked for just took time, not money.
The main thing in our plan was a system suggested by a lawyer: every day, all our child's teachers would fill out a sheet with sections for work done in class, homework assignment, any grades missing, and worksheets, classwork, tests and quizzes were attached. Some years our child also got notes, copied by a sped person who was in the room anyway- but most years she got notes from friends, often copied by the teacher, or by office staff, not our daughter.The nurse collected these "sheets" and we picked them up, or my younger daughter did.
Get an extra set of textbooks so your daughter can move easily between home and school. Our daughter might go up for two classes, come home and rest, and then go up for a class and band practice. It was very flexible, and the system of "sheets" made it all possible.
We had a lot of credibilty because our daughter did very well, kept up, clearly worked hard, and never took a break or an accommodation if she could possibly avoid it.
She is now at a top Ivy league college, and still has some accommodations there, just in case, although not for Lyme, but for some other health issues.
We also worked with the school to get them to allow her to do extracurriculars, even if she had missed a class or classes that day. The argument was that they were important for her emotional development, and prevented her from becoming isolated.
If your child has some cognitive issues with Lyme, you can have neuropsyc. and educational testing done, and get an IEP. But if things are mostly medical, a 504 can be done as quickly and easily as you like: write it, and have them sign it.
Meeting with teachers helps with the politics of all this. I have had 4 teachers contact me about relatives with Lyme, as a result! Good luck.
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posted
You may not qualify for an IEP: my ADHD daughter did not, my Asperger son did, so I think it depends on the "involvement". Both my children had Lyme diagnosed after they had their IEP and 504 in place.
You can get all the accommodations you want under the 504; it is a bit different legally & meeting-wise, and my son's IEP had to have regular written evaluations until they changed that law.
When my daughter developed Lyme (or was finally diagnosed) I composed a letter myself then had her doctor sign it. I listed her symptoms and asked that she be allowed to go to the nurse's office to rest, be allowed to eat her lunch in a quiet place (maybe the nurse's office or the special ed room), and requested that she be excused from all noisy situations (school shows, assemblies, recess, sports, etc.). I mentioned her fatigue, nausea, headaches, dizziness, joint pain, and asked that her teachers excuse her as needed, that they grade her on work done (as opposed to what was not done) as long as they can see she did learn the material, that they orally question her for quizzes as need be or allow her to do do oral presentations when she cannot keep up with writing/typing. She has extra time for quizzes and tests, and takes them in a quiet location.
She eventually had to have a doctor's letter excusing her from the Phys. Ed. requirement in HS. That came from a local doc and not the LLMD's PA who was also not very helpful! This same doc requested shortened homework and a shortened school day as needed; he wrote her a blanket excuse for sick days as needed.
She also has the nausea. They did call the insurance co. and got approval for Nexium and Nexium is what worked best for her, compared to all the other possiblities. She does carry crackers and gum and candied ginger and pink bismuth tablets with her at all times; she needs to snack as needed to quieten her stomach.
You may be able to leave ginger ale with the nurse - a friend's daughter gets migraines & has cola available in the nurse's office.
Most school nurses are helpful but you need to ask for a meeting with the appropriate personal: school nurse and the vice principal. Type up your concerns and present them at the meeting and tell them you are requesting a 504 Plan. Also give them any info you can - i.e. a copy of the numerous symptoms of Lyme, whatever you think will help them to understand what your daughter is going through.
Get this done now and then you will be paving the way for high school, if need be. Also with the 504 in place now, the HS personnel will meet with you to work on the transition to HS.
My daughter used to come home and collapse - she would have to go to sleep as soon as she got home. Now, many years later (be warned!) she is able to participate in after-school activities, but not sports. The nausea is greatly improved, as are the headaches, but they flare up viciously when she gets tired.
Even with the 504 in place, every year was a new beginning in that I had to send notes to her teachers explaining the 504 & her health issues. Don't hold back regarding her health if you want all the support you can get!
She is now a senior in HS.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Unless things have drastically changed (I don't think so)
PL 94-142 is the law that states that all children must receive a free and appropriate education.
The process to be evaluated follows this:
1. Referral for a 540 SBLC meeting.
This is where any specific educational difficulties are brought up.
Modifications are discussed and are to be implemented in the regular classroom.
If the modifications work, then there is no further need for evaluation.
Parents can make this referral, but a teacher's support helps.
2. Referral for an Evaluation.
The school system (Special Ed Department) has found that a child
Has unique learning style (doesn't do well even with modifications),
Or continues to be unable to retain info, or continues to fail, etc.
Parent permission is requested and if granted, the system has
60 school days to complete an evaluation.
3. If the evaluation determines that your child meets the criteria for Special Ed placement
Then there will be a diagnosis persay on the eval.
Can be Speech Impaired, Hearing Impaired, Learning Disabled, Other Health Impaired, etc.
4. An Individualized Education Program (IEP) is created to make long term goals
That they want the student to reach.
It also includes short term goals that will help the student reach the long term goal.
IEP's can be changed at any time by parent request,
Or I've changed them due to progress or lack thereof.
However, no changes can be made without calling a meeting and having a
Parent approve of said changes.
Parents may disagree with IEP's and ask for changes or modifications.
Parents can refuse to sign an IEP or pull their children from special programs.
Parents are supposed to have all the rights.
5. Beginning of Individualized Instruction or Modifications
Now....both my children have Lyme.
My LLMD will fax me an excuse for absence if the absence is related to Lyme disease.
Not for a cold or the stomach flu, etc.
I do not abuse this.
My daughter missed over 13 days last year.
Eight of those days were excused with a doctor's note (related to Lyme and/or pediatrician issue.)
A health plan is a place to start.
Is your daughter failing due to absences?
Or inability to aquire info and retain it?
Or something else?
Maybe ask about home schooling if you know your daughter will be absent for extended periods.
I spent many years as a Speech Therapist in the Public School System.
I was a full team member of the Pupil Appraisal Team.
I did Speech Evals as well as participated in other evals
Such as gifted, Learning Disabled, Mentally Challenged, Emotionally Disturbed, etc.
My son is coming up for 504 committee soon.
I am hoping that the teacher can either provide him with additional
Support within the classroom (I am not sure she is interested)
Or let him spend his nap time (he doesn't nap) in a different classroom.
That way he gets a different approach and more practice on things he is struggling with.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Looks like you have had a lot of response already about 504 plans. My child is in the 8th grade and has had a 504 plan for 5 years now. Just prior to 7th grade I hired an attorney and got exactly what he needs into his plan. Of course I have to be the 504 police constantly with the teachers! Also,I recommend you take your child to see a neuro pychologist. I have taken my son twice for evaluation in 3rd and again in 7th grade to an excellent one in Silver Spring, Maryland. Your child more then likely has executive functioning issues due to the lyme. My son gets of course worse during a herx period. If you PM me I can of course tell you my story and hopefully help you. Also, if interested Pm me and I can give you the name of the pedatric neuro psyhchologist we used. It makes me shake my head to think the nurse is going to set up a 504 plan. OMG!
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
Find out if there is a local chapter of the learning disability association in your area. They can be helpful with information on 504 or IEP meetings and how they should run as well as be supportive. They may also have materials to help you with understanding your rights as a parent. I had the President of our chapter attend every meeting with me. Keep in mind these are volunteers and parents like you and me. Our chapter really doesn't know much about lyme but I didn't need them to. A lot of times just the support of knowing yet another person was there to help me with the fight was great.
Posts: 547 | From Maryland | Registered: Mar 2005
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Shosty
Unregistered
posted
In our experience over 15 years, teachers had nothing to do with the 504 plan, other than, at our request, meeting with us and the principal and nurse each fall. Teachers did not refer our child, or make suggestions, but her situation was medical, and she does not have ADHD.
The Federal Dept. of Education's Office of Civil Rights, which enforces 504's, will tell you that the key person is the 504 coordinator in your school, which should be posted. It is usually the principal, or vice-principal, or dean.
In the early days, our school did not know enough to even bring up a 504. We did it ourselves, and they signed it. Ultimately, this plan brought more peace and fewer dangerous problems for our child, because everything was spelled out clearly, and it provided a plan for the school as well as a vehicle for us to make sure everything was taken care of.
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