Topic: Homebound (504) Lyme student not allowed on campus?!
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Today we had my daughter's 504 renewal meeting.
She has Lyme & Bartonella, severe chronic neuropathy, and non-epileptic seizures. She takes narcotics daily to help her deal with the neuropathy.
My daughter has a 504 classification which means she qualified to receive homebound instruction and is given acommodations at home to make it easier for her to receive instruction. Some of her acommodations include less required school work, less written work, instruction at a time best for her (afternoons), etc..
The first item on the agenda was the Notification of Rights and Due Process Procedures under the provisions of Section 504 of the Rehabilitation Act of 1973.
This Act states several things, but the part I'm concerned about is "the rights granted by federal law to students with disabilities.
"You have a right: ...
#7. to have your child be given an equal opportunity to participate in non-academic and extracurricular activites offered by the district"
The homebound supervisor and the school nurse said my daughter is not allowed on campus for any event since she receives homebound education.
I was told of a homebound student last year that was not allowed to attend the prom for the same reason.
This fall I took her to the school library to check out a book for an English assignment. I also took her to a pep rally before the school's trip to the state football tournament.
According to the law just read, they are in error.
I've placed a call to my education attorney.
Attending an event for social interaction is different from needing instruction at home because it's the least restrictive environment for learning.
What do you think about this situation?
I think they are trying to yank the wrong person around.
On a positive note, the school will provide my duaghter with a computer device that transmits her spoken words onto the monitor and into a computer document. This will be a big help. Her hands hurt from all the writing assignments.
They also plan to reduce the amount of work required and give her more multiple choice problems.
They will allow her to dictate her answers to me, or to type her answers. She'll have to learn to type...if it doesn't hurt her hands.
They are giving the homebound teacher the authority to reduce her assignments as needed.
Both teachers at the meeting complained because she is so far behind with her schoolwork. Three people at the meeting weren't at the last 504 meeting...so I informed them the school is responsible for her being 4 weeks behind.
I have 2 withdrawal forms which I copied from her school file. I was not informed of the withdrawal and did not give my approval for the withdrawal. Homebound instruction was denied for 4 weeks because someone withdrew her on the first day of school. Her illness has cuased additional delays.
I once-again voiced my desire for a formal speech and language assessment and for a special education referral meeting. Now that they have a sample of her recent work there's no reason why she wouldn't qualify for an IEP as Other Health Impaired.
One teacher was puzzled why I'd want my daughter classified as "mentally disabled" (I don't), but the new 504 coodinator explained a student can be classified for Special Education because of their physical disabilites.
It seems like the 504 committee members want me to continue the 504 and not pursue an IEP for my daughter. Why? Because students with an IEP cost the school more money and the acommodations are more enforceable. The 504 is less legally binding.
An IEP...individualized educational plan is just that. The IEP is more tailored to a student's educational needs. The student is tested extensively and suggestions are made to overcome learning deficits and physical disabilities. The suggested acommodations become legal requirements.
With a 504 classification, the suggested accomodations are merely suggestions to help the student learn. Many teachers provide the suggested acommodations, but some teachers do not. They can get away with it when a student has a 504, but they can't when a student has an IEP.
[ 30. November 2007, 03:00 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
nancy,
i'm so sorry to read this about your daughter! doesn't sound right to me, but i have NO EXPERTISE in this.
other moms with 504 will chide in.
nancy, meanwhile you could do a SEARCH, found at top under new post.
504 SUPPORT SUBJECT LINE; if 2nd search needed, body text any date
leave blank; hit send
read all replies, and perhaps you might find a few answers.
geneal is very familiar with these too i believe based upon her former job! i'm sure she will read your post! good luck!
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My son is 17 and has an IEP classified as other health impairment. He is a homebound student and has been for 5+ years. The Special Ed Department handles the IEP's. It doesn't mean you daughter has a mental impairment.
IEP's don't cost the school more money. They are funded by the Federal government.
We fought with the school for many years. The school told us that we needed an in-state doctor. I finally consulted a education attorney and she told me the school was wrong. I then contacted the MN Department of Education and talked to someone in the Special Ed department. The Dept. of Ed person was so mad when I explained what was going on. She called the Special Ed director immediately and we haven't had any more problems with the school.
The homebound supervisor and the school nurse are not the people I would consider as the authority on this. Have you contacted your state's Dept of Ed? I don't think the school is right.
posted
My two daughters have ADD. They did not qualify for an IEP either. Their IQ was in the gifted range when tested, so I was told they didn't qualify. They did qualify for 504 though because of the ADD.
My oldest daughter was treated for the ADD, and was on the honor roll from then on. My youngest how ever did need help.
I talked to an attorney, and it really helped when I met with the school. She didn't need much, mostly help organizing. Once the school figured out I knew what the laws were they went out of their way to be very helpful.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Pab, does your son have Lyme disease? That site is a great resource. It's good to know we don't have to have an in-state doctor.
Betty & Geneal, thank you for your encouragement.
Kathy, I'm glad you were able to get the help your daughter needed.
Where did you guys find out all these facts? The school doesn't volunteer any information.
I was told there has to be an academic need before a person can be given an IEP. My daughter is now 2 years behind and getting more behind each week. Wouldn't that qualify as an academic need? Her physical condition limits the work she can complete.
I was told she has to complete the minimum requirements for her grade level before being promoted, even if it takes her years to complete those requirements. Is that right?
The 504 coordinator notified me last week by phone of today's renewal meeting. Today I was given a letter dated 11-19-17 notifying me of that meeting. Were they supposed to have mailed this letter? Does it even matter?
Another oddity: The original renewal meeting was rescheduled because the homebound supervisor didn't notify the homebound teacher of the meeting. I informed the homebound teacher of the meeting when I scheduled it over a week ago. The 504 coordinator rescheduled the meeting although the homebound teacher arrived for the meeting. I guess she didn't realize the homebound teacher was waiting in the lobby. ...another whacky communication error.
More lack of communication: The 504 coordinator and the 2 teachers did not have a copy of the 3 physicians' letters, the neuropsych. test results, or other pertinant information. Who is responsible for the distribution of this information? Shouldn't everyone on the 504 committee have a copy of this information?
My daughter's guidance counselor was absent from the meeting today, as was the principal and social worker. The guidance counselor was being very helpful last spring, but at one point she stopped talking to me, as if she were afraid to talk to me.
The guidance counselor began to cut off our conversation when I called and said I needed to talk to someone else. The same thing happened when I called the special ed coordinator. I don't know what went on, but something happened. I feel someone at school may have told them to limit contact with me.
I did not make any harassing calls, and only called a couple of times. I was politely trying to find an advocate for my daughter and trying to get information about special education.
At the last 504 meeting someone (principal or 504 coordinator) wanted to know who I had talked to about my daughter...as if it was wrong to seek appropriate help for my daughter. I thought that was an odd question.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tracy9
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AARRGGHHH...I had the same problem with my son last year; they wouldn't let him go to the Prom. They were wrong, wrong, wrong.
Research "IDEA" and "FAPE" on the internet for laws.
Your state should have educational advocates you can call.
I got the name of a top atty in Hartford who wrote the laws in CT on special ed. One meeting with him, dropping his name at the school, EVERYTHING CHANGED.
They are now bending over backwards for my son, offering to pay for online courses, etc.
You need to know the laws and state them in the meeting. Ask for, in writing, a meeting to request an IEP...in CT it is called a PPT meeting. Your child definitely qualifies for an IEP.
My son has one and initially it was just for ADD. Other health impaired is the catagory.
I have always found going into a meeting prepared with the information, and acting confused, saying things like,
"I'm confused as the law states "least restrictive env," and the student handbook states "student should be encouraged to attend any activities possible while homebound", so I just don't understand why my son can't go to the prom. Wouldn't this mean he is being discriminated against because of his disability, and beiing excluded from school activities?:
Works every time...as soon as they know you are "on to" them, they back down and fast.
There are some awesome articles for dealing with the schools; email me and I'll forward them to you.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I wish you could move to a better school system.
Sheesh!
It may be time to take the bull by the horns so to speak and
Initiate a suit. Hate the idea. I am going through it now and it isn't any fun.
What does your attorney say?
I think that your attorney needs to be present at all meetings and
That all phone calls and correspondence needs to be handled through the attorney.
However, that could be pricey.
Free and appropriate education for everyone (at least in theory that is).
Sending you positive thoughts and more prayers.
I don't suppose this local school system is aware of the tangled web
They are weaving all in the name of denying your child an appropriate education.
Under the umbrella of Sp Ed, your daughter could have the option of diploma, GED or alternative certificate.
You can't go to college on a alternative certificate.
You can on a GED though.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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hshbmom
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I'll call the attorney today. I left a voice message yesterday.
I can't believe they do this stuff either and expect to get away with it.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Get the right atty and everything will change. The school dist. tries very hard to save money for special needs students. Sometimes it is due to ignorance, but mostly due to $. They seem to want to punish those that are not in the main stream, easy to handle.
Using the atty will make everything go much smoother.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
My son has lyme disease and also has a 504 plan. The middle school jerked me around last year so I retained an education attorney. We met all summer and things have changed mostly this year. I would strongly recommend an attorney to everyone who feels they are being jerked around by a school. A lot of times the personnel are ignorant of what is allowed and not allowed. Even though my school district seems to up on a lot of things the school attorney did need to correct some school personnel during one of our meetings because they were spouting incorrect info. If you need the name of a very very good pediatric neuropsychologist that is lyme literate send me a private message and I'll be glad to give it to you. I had her come to one of my meetings and she sure impressed me. Hard to disagree with a doctor like this. Good luck to all the parents here of children with 504 or IEP plans. Its a frustrating process that I wouldn't wish on anyone.
Posts: 547 | From Maryland | Registered: Mar 2005
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quote:Originally posted by hshbmom: I'll call the attorney today. I left a voice message yesterday.
I can't believe they do this stuff either and expect to get away with it.
hshbmom,
My son has Lyme, Babesia and Bartonella. He was diagnosed in 2001 but most likely was born with it.
I found an education attorney from the Wright's Law website.
For us, fighting the school was often worse than fighting Lyme.
Do you know any other kids with IEP's? When you have an IEP, they must provide (we live in MN) information about advocates, mediators, students' rights, and more.
Don't believe what the school tells you. Check with the Dept of Ed or other sources like Wright's Law.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
edited: nancy, since WRIGHT'S LAW was mentioned; contact ANIEK since she is a law student and has things available to her that we DON'T! good luck! betty
nancy, i just added your topic link to my newbie's package since we deal with 504 often on here.
when filing it there, i discovered this one, so copying it here too!
posted
In my experience, government agencies are too overworked to properly address discrimination cases. That leads to careless and costly goofs. A good attorney can help, but they are not easy to find, especially if you need one who understands and can work within your disability limitations. "Just come to my office" or "just file the papers in court" don't happen easily for a homebound person.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Anyone who travels down this road needs an education attorney not just any attorney. Mine did an outstanding jobs as he already understood the education laws.
HsmMom you sent me a PM but your mailbox is full. Empty it and I'll respond to you with name of the pediatric neuropsychologist that is lyme literate.
She's in Silver Spring, Maryland and yes it is expensive but I swear worth every penny. Heres a tip. First time I had my son see her we did not know he had lyme so insurance would not cover the charge. Early this year I had my sons lyme doc write a prescription for him to see a neuropsychologist and the insurance co paid for most of it as its a medical problem now.
Thats the whole issue. Insurance will only pay if its a medical problem which of course lyme is. The extensive evalutation is a two day thing which costs about $2200.00 now. Our insurance co. covered $1600 of the costs so we still paid for some of it. It really is worth every penny. Its an invaluable tool to use in your 504/IEP meetings. They can't refute the data as its solid.
The doc will come to your meetings for a fee. She's very impressive. I had to stop myself from giving her a big hug and kiss in the middle of our meeting. I came home and cried with relief that day. I'm not sure if she would travel out of state though. Its worth asking however. PM me to let me know your box is cleared and I'll be happy to give you her name. She really knows her neuropsychology. In my opinion she unintentionally made the school pyschologist look like a novice.
I've spoken to SB on the phone and shes very impressive as well but she isn't a neuropsychologist.
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
HshMom, Oh yeah. forgot to comment on how someone has made you believe that the teachers can get away with not following a 504 and that they only have to follow an IEP. 504 is a federal law and NO the teachers can NOT get away with not following a 504 plan unless you let them. They tend to "forget" accomodations so we have to unfortunately "police" their actions and remind them what they have to do. I've found it often difficult but something that has to be done. I've also found that having an attorney changed the dynamic of the entire situation. In my experience it has helped everyone involved become so much nicer and a bit more concerned.
Last piece of advice, document everything they do wrong. If you have a verbal conversation with anyone at the school, follow it up with a letter stating what was said and cc everyone. I have a very large book filled with emails that have gone back and forth so no one can refute what they have said or how they have acted. Cover your A.
Posts: 547 | From Maryland | Registered: Mar 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
LymeinDunkirk--good advice. As a teacher I know that I have to follow a 504 plan just as I would an IEP. It is legally binding.
I would suggest that at your next meeting you take an advocate with you--whether it be a friend or a lawyer. I also would send correspondence certified mail, so the school cannot claim they have not received it.
I am frustrated as a teacher with Lyme as my school will not accomodate me. I teach straight through from 8:30 to 12:50 before I get a break and then I get 30 minutes for lunch, 45 minute team meeting, then a 45 minute planning period which I usually spend helping students, and then teach another class until 3:45 and then have duty after school. They won't even buy me a little chair with wheels to sit and scoot around the classroom (I have balance problems and seizures that sometimes make me fall down). That would cost less than $100.
Anyway, I have digressed--just wanted to point out the schools will not accomodate you if they can get away with it. Be assertive!! Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8976 | From Illinois | Registered: Aug 2004
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lymemomtooo
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Member # 5396
posted
I pray that no other children have to go thru this Hell and then there are always more stories of how our kids are getting janked around.
We've been here and done this...I had even been on school board and still got yanked around. My daughter also was not allowed to be in school.
A letter from one of our best psych's allowed her into school for a half day senior year and still they would not allow her to do any extracurriculars.
Discovering she was a half credit from graduating caused all of us to jump and we approched a special ed. advocate that assured us we had many reasons to get a lawyer and sue the district. They were violating many rights.
This was while under an IEP for non-verbal learning disabilities..Even our brightest can be diagnosed with this disability and need and receive help.
The principal and the special ed. coordinator were the problem..Not really most teachers. However one was squeemish over the picc line.
I started calling the board members and said we were getting a lawyer. The superintendent knew me well enough to know I was going to fight this tooth and nail. I do not threaten something that my husband and I are not willing to go ahead with. He pleaded for 3 days to work this out.
Afterwards, my daughter received better respect and all of the accomodations in order to graduate. The principal and special ed coordinator are no longer with the district. We were just one of the familes that were being discriminated against and the rights of our child violated.
Find your mother panther that lives deep within and bring it up to the surface.
Only problem on our side is that once we got her rights reinstated, she was too fatigued and withdrawn to ever take advantage of any special things..But that was ok...She knew that she was now allowed to participate and didn't fell like some unworthy piece of junk that had never been a discipline problem.
Sometimes we have to cross those lines that make us think that those in charge are doing what is legal or best for our children and go with our gut instinct to fight for our child.
And forget the 504..In Writing demand a meeting to test for disabilities..Even if it has to be a psych one. It must be in writing..I think they then have 7 days to respond and plan one..That is if it is a public school receiving federal funding. NOt sure how private works.
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I am really sorry your daughter is having so much trouble. I am a special education professor.
Free and appropriate education is not an ideal or a goal, it is the law, a federal law. A federal law that unfortunately is not funded nearly enough.
It is a law and districts have child find madates to actually go out and find the children in their districts who require services and are not getting them.
I am taking the AL to mean you live in Alabama here is the SPED manual from that state. All states are required to follow IDEA but it is written with room for intrpretation.
If you request your child to be evaluated for OHI, the district has 90 days to evaluate and provide the IEP (if she qualifies). If she really is 2 years behind and is found to be functioning at that level during assessment it sure sounds like she would qualify. Then they legally have 90 days.
The squeaky wheel does get the oil. Finding a local advocate or lawyer often will let you be heard.
Reading up on the law and letting them know that you are not afraid to request a due process hearing will also open some doors.
Good luck.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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lymednva
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Member # 9098
posted
These are all based on federal laws, so it doesn't matter which state you live in.
Parents have the right to initiate a screening of their child. Just put it in writing and there's a federal law about how many days they have to meet with you and then how long they have to do the testing.
I taught elementary school, until I became disabled from Lyme, and always had a bunch of special ed kids in my classroom.
That means I attended the screening meetings and IEP meetings for all these kids. Then I moved up in grades and we met with middle school special ed teacher to get the best placements for our kids when they moved on.
My daughter was a special ed teacher for two years, until she quit to go to law school this fall.
I also have a son who is an assistant principal.
We have a lot of info between us!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Your daughter requires an IEP. She can probably qualify under the handicapping condition of Other Health Impaired. That is a category for children who have cancer, or Lyme, or other health problems that cause them to lose a lot of schooling and fall significantly behind.
Your school is being nutty. It seems like you need an educational advocate or an attorney.
PM me if you have any questions. I was the director of special ed programs for years.
The only problem I see is the practical one -- how much energy does it take to fight? Is the payoff worth it?
Once I get healthy enough, there is nothing more I would like to do than to travel around and advocate for your kids with the schools when they do silly things like what you reported.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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map1131
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Member # 2022
posted
Oh my goodness. I can't believe this thread. We've been told by the powers that be, that this is not a illness that can be contagious.
So what's the deal? Do other children that have illness and are 504 get banned from school property?
I'd be fighting for my child like you and be a wild woman at that.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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My Lymie daughter has an IEP, but she has learning disabilities from Lyme (which are improving with treatment) and had the IEP before her Lyme diagnosis.
We are blessed with a wonderful school district ... I was VERY ill with Lyme when we moved here .... I had stayed back at our old residence until our oldest daughter graduated, so I wasn't even here ... it took two weeks for the school to contact us and suggest we go through the work to get her an IEP. It took a year to get the IEP totally worked out, but special accommodations were made immediately.
But she is on campus .... I would be pitching a fit if I were you ... but after I pointed out the LAW to them ... they might comply if they know the law as it sounds like an ignorance problem.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Good news finally:
We had the initial special ed referral meeting and the referral was accepted. Prior to this meeting she was approved for a complete speech and language evaluation.
The first speech test is this week.
I feel they're finally willing to do what it takes to help my daughter succeed academically.
She'll be evaluated by a physical therapist and an occupational therapist. She'll have many other evaluations. I think she will easily qualify for OHI (Other Health Impairment) classification.
The school now says she may not attend an event on a day when she did not receive homebound service due to illness, like any other student. I understand their opinion, but they don't understand the fluctuations in symptoms from day to day and hour to hour.
The best news of the day is that she's being referred for a neuro evaluation at Columbia University. ...this referral is from a pain specialist! This guy is becoming more Lyme friendly at each visit.
He wanted to run another Lyme titer test. I humbly told him that test wouldn't tell him much since it's such a poor test. He agreed that it wasn't very useful. I let him know some doctors use the CD57 to measure treatment status.
The pain specialist realized the neuro he sent us to was a not helpful. The neuro didn't notice some simple signs and told us he couldn't find anything abnormal. The pain specialist noted the absence of her gag reflex and uneven eyebrows.
The neuro told my daughter to get off all narcotics for pain and to see a psychiatrist for the anxiety she suffers (due to living in pain). Quack Quack!
I'm very happy with how everything is going.
She had a LLMD visit this month. The physician wants her to have IV treatment to speed up her healing. She has deep seated neurological problems and cranial nerve involvement, in addition to diffuse endothelial disease, and pain problems.
The difficult aspect is to convince my daughter to accept IV treatment for the sake of her health...now and in the future.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
nancy, PROGRESS FINALLY after all this fighting and eduction! glad the pain dr. referred you to columbia's lyme center!
or, sorry, our state is doing nothing to help your daughter!
have you ever called kathy cuddeback, pres. of iowa's lda chapter? she may have some good advise for you. best wishes.
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hshbmom
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Member # 9478
posted
Hi orrn,
You must contact your district, county, or state special education department. Have them send you a copy of the special education laws. They must provide this information within a specified time.
You need an advocate to help you negotiate this maze. Contact a special education parent support group in your state.
Talk to anyone who will listen. Go to school one morning and sit & watch the children as they arrive...talk to the parents of the children who use wheelchairs.
Contact the Office of Civil Rights. They deal with discrimination against people with disabilities. They can advice you how to act.
You may request a meeting to review your child's 504 plan, or may request a special education referral meeting. 504 renewal meetings should happen once a year. You can request a meeting even if it's not time for the renewal.
Request a review or formal evaluation (to get an IEP) in writing. The school must set an appointment date within 10 days and must have the meeting within 60 days. State timelines may vary.
Make all requests in writing; make a copy for your file and send the original by registered mail. Send carbon copies to the 504 coordinator, principal, and district special education director.
Put everything in writing; create a paper trail and keep it. Document every phone call, conversation, and other modes of communication.
See the Wright's Law website mentioned above.
Know your rights. Stand firm. Take a person to these meetings with you. Record the meeting & offer to provide the school a copy of the recording.
You are your child's only advocate. You know your child better than anyone else. Your child's education depends upon you.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
nancy,
BRILLIANT ADVISE from your own and others personal experiences; thanks for sharing them.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
orrn, you are from Iowa?
Google Iowa + "special education" + law
...or leave out law and see what you find.
...or use 'advocate' instead of 'law'
Hey Betty, that is a summary of everyone's advice from here...it has been invaluable.
[ 22. January 2008, 07:11 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I learned why the school withdrew my daughter on the 1st day of school despite having a current 504 for homebound service.
504 plans are effective for one year and must be revewed each year. My daughter's 504 was signed in December 2006.
A secretary at school was very adamant that the 504 expired when the new school year began...therefore relieving the school of providing homebound service.
She didn't care when the 504 was signed. I think she's wrong about this...dangerously wrong from a legal point of view.
I'll find out the truth about this today and will let you know, so you don't have to go through this circus.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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