posted
I have posted about school issues before, but can't find what I'm looking for in the search area.
My daughter is 15 and we have had issues with the school systems since she started.
She has LD and coinfections. She has had extreme anxiety and doesn't really leave the house much.
This has been within the last few years and confessed she is having hallucinations last night.
She has a lot of issues with school work and is currently in an online schooling program.
Even with this program she is not able to put in as many hours as they want her to and is unable to do a lot of the work.
They know about her illness and the issues, but keep saying "It's the law". What do you do with children that are chronically sick?
She is home, not out running around. We have had doctor involvement since she was 3 years old.
I don't understand why they don't get this. What are my rights and where do I stand legally?
Is there someone here that is knowledgeable on this?
Thanks in advance for any information.
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surprise
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I am not an expert, just a suggestion.
Look into 504 plan, which is legal help/ schooling guidelines for ill or disabled children and public schools.
Child's attending Dr. writes a letter stating illness, limited capacities, etc. you want to google examples, guidelines,
then set up meeting with school asking for 504 accommodations for your ill child with treating Dr.s letter in hand.
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poppy
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Somewhere I have seen more about the individual plan for kids who have disabilities, which would surely include a disease like lyme. But can't find it and in the meantime, maybe something in this will help. Even though it is mostly talking about kids who are actually going to school not doing online instead.
Here's another one. I am surprised that your daughter does not already have the individual plan with the school, thru section 504. Would have thought it was necessary to be able to do the online program.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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beaches
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The first thing you need to do is request an evaluation of your daughter. Address it to the head of Special Ed or the equivalent. Briefly state what you posted above regarding your daughter's illness. Send all correspondence certified mail, return receipt.
The school system should then work with you to schedule evaluations--educational, psychological, and others which can be conducted in the home.
Once those evaluations are completed, there is a meeting amongst the parents, special ed personnel, teachers and evaluators, etc. to determine if your child qualifies for an IEP or a 504 plan.
From there, accommodations and modifications are worked into whichever plan. For instance, one accommodation for your daughter could be that she has instruction in your home from teachers in your school system. Another could be modified work assignments because she is physically unable to do the work of a healthy student.
If the school system refuses to evaluate your daughter, you will need to go further--enlist the help of an advocate or write to the BOE and super.
Another thing to keep in mind is to get in touch with teachers directly and explain your daughter's situation. Often teachers will excuse some assignments/homework when the kids fall far behind.
The other option you might want to try is homeschooling. Some states have practically no regulations regarding that and some have stringent regulations. If you live in a state with little regulation regarding homeschooling, that is probably your best option.
You should google homeschooling in your state to find out more.
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beaches
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It is your legal right to homeschool your child. You do not need permission from your school system or your state. No one has to "approve it"
And FYI, in order to meet hours required for homeschooling, remember that our children are learning throughout their waking hours eventhough they are ill.
Your instincts are correct regarding the absences and the 504. Think about it. Your daughter is sick. She cannot attend school. Her doctor(s) support this.
Given that, how in the world can she be expected to attend school and continue to be marked as truant?
If your school system took into account how ill your daughter is/was when the 504 was written, she would have an accommodation for receiving instruction in your home, which would be approx 2 hours per day at the secondary level.
You should write a letter to the head of sp ed or equivalent requesting that the 504 committee reconvene asap. This is your legal right.
Make sure you have medical documentation indicating how ill she is and that the severity of her anxiety prohibits her from attending school at this time.
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beaches
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And enlist the help of her doc(s). They can certainly write a note indicating that your daughter is unable to attend school and is in need of instruction delivered at home due to the severity of her illness.
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poppy
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Be careful about hanging this whole thing on lyme. Better to emphasize what she can and can't do, without giving any opportunity for them to question diagnosis. This has gotten parents in trouble.
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Catgirl
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posted
Great advice Poppy!
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beaches
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orrn, believe me I surely know things don't always go as they should. It is bad enough to have a sick child. To have to go through hell with a school system just adds so much more unnecessary stress. And I am sorry to hear about your job situation.
I think you are being railroaded. You DO have rights under the law. I surely wouldn't be taking the word of a truant officer or the school system's attorney! They are not interested in what is best for your daughter.
Poppy, the physician has to write a dx on his notes and IMO if the child has LD, that dx should be on the notes. He can also include other dx such as dyslexia, anxiety, etc. and he can/should state that due to her severe symptoms she cannot presently attend school.
orrn, I really think you need an advocate to help you navigate this. Advocates are much less expensive than attorneys. There is a nationwide organization called COPAA (Council of Parent Attorneys and Advocates). Here is a link to their site:
posted
My daughter too has had to pull out of regular school and enroll in virtual because of her condition.
I will admit that I fudge the numbers when I put in the number of hours she does each day. Our program requires the parent to keep attendance, and I ensure that the records reflect that she's putting in her hours.
Additionally, my daughter chooses to do her work in spurts, with long rests in between. So she does the work when she feels like she's emotionally up to the challenge of dealing with the pain (even typing is painful for her), even if that means it's done at 1am on Saturday night. Then she rests.... for days.... without doing any school work. This was actually a recommendation from her therapist (for dealing with the chronic pain).
This means that she gets really behind, and then goes into a spurt where she gets (mostly) caught up. And I just ignore it when she's really behind.
We have been really lucky that the staff of our online school is very accustomed to dealing with chronic illness. A large portion of the kids in the program are there because of chronic conditions. If your current online program is not working for you, perhaps you can find a private online school that will be more willing to make accommodations.
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beaches
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And just so everyone knows, there is no stipulation regarding attendance/absences in the Section 504 law, nor in the IDEA law (IEPs).
In fact, many times excessive absence due to illness is why a 504 plan or an IEP is created for a student in the first place.
Do not assume that school employees know the IDEA and Section 504 laws. And, do not assume they wouldn't lie to you even if they did. Their allegiance is to the organization signing their paychecks, not to you.
And remember too that these are federal statutes. A school system does not have the right to put its own "spin" on the law. Of course, they will try, which is why parents need to have a fundamental understanding of education law (in addition to medicine lol) and get an advocate who can on represent them and help them work through problems with school systems.
Stepping off soapbox...
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beaches
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carriekaye, our children are learning ALL the time, even when they are too ill to attend school.
For instance, if they cook/bake/shop with us, they are learning math.
When we tell them about the dangers of drugs, they are learning health.
When we watch a documentary with them, they're learning history.
When we correct their grammar when they speak, they're learning English.
I am so sorry to hear about your daughter's health struggles. I hope she gets better soon.
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posted
I agree that kids learn all the time, so do I! At least I hope I do.
However, my 16 y/o daughter is NOT learning calculus, physics, literary analysis,
etc when she's cooking, shopping, watching documentaries. The level of
education she's at requires more formal training.
At this point, I'm just happy she's passing classes and will be able to graduate.
Before virtual school, she was failing classes due to missing class for MD
appts and the pain of writing and walking around campus. Now she's back to
straight As, like before her pain got so bad.
Thank you though, she has her first appt with the LLMD in almost 2 weeks. I'm
also hoping that he can do what no other doctor has been able to.
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beaches
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carriekaye, my point was that in order to fulfill the mandated number of hours of instruction set by a state for homeschooling, a child does not need to be sitting at a desk receiving "formal" training.
A debilitated child, unable to go to school, can still fulfill the # homeschooling hours required by a state.
Online schools have their own deadlines of course, and that model of homeschooling is different than the model I was referring to--ie, a parent doing most or all of the homeschooling. I am glad to hear that your daughter's online school has an understanding of chronic illness and the ensuing difficulties.
I understand what you mean about the level of education. Unfortunately, many children afflicted with tbd are unable to achieve the level of academic functioning they'd be able to if they were healthy due to neurological issues, pain, etc.
My expectation was that my children would be in honors and/or AP classes (and be full participants in school athletics and activities) and be accepted into great colleges.
I have had to curtail those expectations significantly. These days I'd settle for a kid with a C average who is 75% healthy, has a good social life and a few good friends.
I have also learned that when faced with severe illness, some kids turn to creative outlets such as writing, drawing, etc. and those outlets should be encouraged and celebrated just as much as a grade of A in an AP class.
Good luck with the LLMD appt. I hope your daughter feels better soon. It certainly is a tough road.
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beaches
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orrn, how are you doing?
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kelmo
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I do attendance at the school where I work. If the child has a 504 and the parent calls the attendance line and mentions the illness as the reason for the absence, it will not count against them.
Even working in the school system, I had to fight tooth and nail to get accommodations for my daughter.
It was a struggle, involved summer school, home school and a special school for kids with other problems due to pregnancy or crime. But, she graduated on time, on the couch, while her friends walked in graduation.
It's heartbreaking when our children are too ill to have a life. My daughter is now 26, attends college. She has never been able to work and attend college, but she is holding on to that dream. She still lives at home, still in treatment, unsure about her future. We take one day at a time.
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beaches
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Kelmo, Posts: 1885 | From here | Registered: Jul 2012
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