posted
Help my sons school is run by idoits that do not understand lyme and it's impact on him and his school. I'm in the process of getting a 504 for him done. He is in the tenth grade and is missing so far the first semester. They do not understand this horrible illness. Does anyone know of any articles that can help? The principal is willing to learn.
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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Unfortunately, most all schools are rin by people who are clueless about LD.
You might consider shooting higher, so to speak..and going for classification under IDEA.. as it has more 'teeth' than a 504. You also will be in for long and hard battles with only a 504 in a difficult recovery.. and an adversarial school.
Also, so long as you have a Doc providing a letter of diagnosis and that it is medically necessary that he be out of school..
the school is required by Federal Law to provide your son with FAPE.
Free and Appropriate Public Education.
That includes if he is home due to medical necessity.
In fact... if you have already let the school know his condition, certainly they are aware he has been out of school this long.. and they have not initiated an eval for classification..
you could turn the tables and effectively catch them with their pants down.. (or threaten to)..
by (in writing) laying out the fact he has a condition which impairs his ability to learn or attend school.. what your son needs as far as reasonable accomodations.. you could insist upon an independant eval at their expence, and get LL neuro-psych testing done (these are just ideas to give perspective, something like that would take a little legal assistance, you shouldn't mention any of this unless you are prepared)
and if they are idiots about it, you can say you want to go to Impartial Hearing.
They know the law, they just don't think YOU do. They will not want to be in front of an Impartial Hearing judge having not serviced a child this ill. Don't take it personally..
it's a budjet concern most if the time, sad to say.
However, many districts do get plenty weird about Lyme..
So I alwaus try and keep letters or communication re: Lyme concise, and always saying only what they need to know. I never get into defending the illness.. when anyone starts to say 'Lyme doesn't do such and such'
ask them 'what qualifications do you have to make medical judgements?'
(that shuts 'em up pretty quick. )
It's incidental..WHAT he has.. the thing they need to service is the IMPACT pf his condition on learning. (they are required to do this by Federal Law)
They are not Doctors and should not try and play that they are.
This is complicated, and I don't know your particulars.. however if there is an Educational Advocate (usually a parent of kids with disabilities thremselves).. they are not attorneys.. but they know the law, and what the school is required to do/provide.. and they know what the school might pull.
They charge about 30 an hour, and can coach you, get your ducks in a row, and/or go to meetings and help get him classified.
You do have to be careful, because some schools can get really nasty about things all of a sudden.. so you do want to get all your ducks in a row, communicate everthing, all things.. in writing, and record all other contact in a journal...remain really calm and strong, and start indicaring you are in the know. (after you really are in the know)
This sounds daunting, but once you learn all the rights your son has right now as we speak..
you will feel allot better, and won't feel like you are coming from the bottom up getting what he needs.
The Lyme part can get sticky.. so you do need a supportive Doc, make sure letters from him are worded well..
and avoid using the term Lyme as much as possible..
and refer to the IMPACT such as fatigue, diffuse brain function, extreme light and sound sensitivity, chronic pain, or whatever the case for your guy may be.
You're in a strong position, and just have to be a little savvy about avoiding school personell who may try and say Lyme is bogus or this case is bogus.
That will make life much more difficult..
but bottom line, they aren't supposed to be doing that.
Avoid agreeing to school physician evals and things like that. The comment there from you could be something like: "How many cases of chronic Lyme has this Doc treated to efficacy" Answer will be "None"
So, you will proivide medical evals from YOUR SON's specialist(s).
Only LL specialists should be overseeing a Lyme case.
I have some papers here, maybe later I will get back to post them.
best of luck, Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Wow, Mo, excellent advice! I couldn't agree more.
Here's the summary:
A.) Have your doctor provide a letter describing the symptoms that need accommodating.
These may include profound fatigue (may need a shorter day or home tuition), processing speed (may need additional time to complete homework or tests), joint pain (may need to be excused from gym), psychological problems (may meet regularly with the school psychologist) and cognitive problems.
B.) Individuals with Disabilities Education Act (IDEA) was implemented to ensure that all children would have access to Free and Appropriate Public Education (FAPE), regardless of handicap. My child is classified as "other health impaired" under this act. It affords him access to special education services.
The Special Ed department will develop an Individual Education Plan (IEP) with input from teachers, you, and the department. The doctor's letter is important here, so it should be as succinct as possible. If the Plan needs adjustment, you or they can ask for a meeting to review it. It MUST be reviewed at least once a year (more often is better).
Section 504 of the Civil Rights Law protects children from educational discrimination because of disability. It is usually the way to access more simple accommodations, like seating the child closer to the teacher. It usually involves helping the child learn without involving the special ed department.
C.) If the school requests that your child be evaluated, insist on an independent eval. (My son was first evaluated by the school staff -- their data was right on, but their interpretation of the results was skewed.)
Get a Lyme-Literate MD (LLMD) to give your child a neuropsychological exam -- a series of tests to target cognitive and emotional function. The school pays if they are the ones requesting the evaluation, so it is free for you.
D.) Don't let the school staff "play doctor." (There's a special ed person at my son's school who doesn't think he has Lyme, because she talked to her brother, the doctor!)
I usually comments about, "He's just being stubborn...lazy...etc." by saying, "I don't know where the disease ends and the child begins. I have to work with the whole child as he is." If the child has a diagnosis, so does the school system! Emphasize the impairments, and don't worry about the cause.
Download Issue #35, and gl to page 13, "No Lyme Child Left Behind -- Lyme-literate psychotherapist talks to teachers"
That should get you started!
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Amy, it is so unfortunate that schools are not are friends when are children are so ill...
You have great advise from 2 very literate posters..Do not think I can add anything except remember they do not know what is best for your child, you do...lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Thanks to all! I have read and downloaded several of the articles! It is really hard here in Michigan for administrators and teachers to take this seriously. My son has had a week from hell and now all this school crap!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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My daughter is in the 10th grade too and is struggling so much this year.
She has had a 504 plan for several years based on Lyme and an additional condition; however, this year she has missed so much school we had to request a "reduced day school week".
Granted, I had asked for this before and was told it was "Not possible"; however, I found this year sometimes it is WHO you ask!!
Her principal arranged it and Dr. J provided a letter requesting it and this was supported by a similar letter from our PCP.
We are crossing our fingers that her only being required to attend 3 days a week will help!
I feel your pain and am here if you need to vent!
Sherry
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Here is an article that should be of help and you can contact the Michigan Lyme Disease Association and get some help on how to deal with Michigan schools. If you go to their website, you can e-mail them from there
The article below is a wonderful discussion about kids with Lyme disease and getting them the help they need in school. And it is by someone who has had first hand experience with a good number of cases.
In addition he is a member of the 2005 Scientific and Professional Advisory Board of Lyme Disease Association.
This would be a good article to show your school administrators and psychologists. Ann-OH
[quote] What Every Parent Needs to Know About Educating Their Child With Chronic Lyme Disease
By Alfred C. Tagliabue, M. Ed. Director of Student Personnel and Community Services, (Retired) Jackson Township, New Jersey
More often than not children who contract Lyme Disease are treated with antibiotics for a few months and do not require any additional educational supports or services to make up for lost time in school. This is the rule for the majority of children who contract Lyme Disease, however there are many children who have a difficult time responding to standard treatments, for any number of reasons, and other children who become re-infected one or more times.
These children are considered to have ``Chronic Lyme Disease''. They have a multitude of symptoms and problems that make it impossible to keep up with their schoolwork without special accommodations and services from their teachers and school. It is important to note that some physicians in the medical establishment do not recognize the term ``Chronic'' Lyme Disease.
Some school physicians are among those who do not recognize the term ``chronic'' when dealing with students who have Lyme Disease. If your child suffers from Lyme Disease and needs special education services or accommodations you may get a hard time from your school district if your local director of special education either had the disease or knows someone close to them who had the disease and was cured with a couple of months of antibiotics.
These people are among the lucky majority that never become re-infected and respond positively to standard antibiotic therapy. This article however, will deal with those students who do not respond well to standard treatment and have a variety of needs for special education services and or accommodations in the classroom.
While all states have their own special education laws there are two federal laws that protect students with Lyme Disease and supercede state code and regulations.
The first law that parents need to become familiar with is the Individuals with Disabilities Education Act or IDEA. This law deals with all students who have some form of disability.
Students with Chronic Lyme Disease may fit several different categories depending on how severe the Lyme Disease has impacted on the child's ability to profit from regular education.
Some classifications or categories could be ``chronically ill''; ``other health impaired'' or ``learning disabled''. You will need to obtain a copy of your state's special education code and read it carefully in order to become an active participant in the decision making process for your child.
Many states have slightly different categories and definitions than those given in IDEA. Remember that, the IDEA law supercedes all state special education laws except when the state law is more protective of your child's rights or offers more services.
It is also possible to have your child qualify under other more intense terms such as ``multiple disabilities'' or other categories depending on how the disease manifests itself at a particular time during the course of the disease. There can be, in extreme cases, both neurological and psychiatric problems that may require additional medical and educational treatment.
A ``red flag'' for parents when dealing with their school or school district, would be a suggestion to classify a child with Chronic Lyme Disease as ``orthopedically disabled''. This would show some archaic thinking on the school's part if they believed that Lyme Disease was like arthritis. The most significant educational impact of Lyme Disease lies with lack of vitality to produce schoolwork, the ability to focus and sustain attention, memory and the overall ability to process and syntheses what is being taught.
If a child with Lyme Disease had some severe orthopedic symptoms they would most likely also have some of the learning problems as well and this would qualify under the term ``multiple disabilities''.
Children with Chronic Lyme Disease can have a multitude of symptoms. These symptoms can change week to week, day to day and sometimes hour to hour. Every child is different, so parents and school special education committees (child study teams, etc.) need to listen carefully to both the students and the family physician that is treating the student for the disease.
Some children have their REM sleep interrupted by the disease and would have significantly more functional learning disabilities in the morning. I have found that allowing them to stay home in the morning and bringing them in at lunchtime provides them with a greater vitality needed for learning.
I would then provide home instruction between 4 and 7 PM for the subjects that were missed in the morning. This may continue for a few weeks or many months depending on the success of the medical treatment.
A very common problem for these students is the inability to focus and attend. In fact some children with Lyme Disease have been misdiagnosed with ADD or ADHD and have been treated with Ritalin.
It is important to remember that Lyme Disease is diagnosed by excluding other diseases and disorders since there is still no 100% accurate test for Lyme Disease.
Another very common problem is memory loss and the ability to organize one's schoolwork. Any insult to the central nervous system can cause memory problems and once again the student's abilities can change day to day or hour to hour.
Motivation is also a key factor to learning. When children don't feel well they will have a tendency to become depressed and develop feelings of hopelessness. This will have a negative impact on their ability to perform academically.
Children with Lyme Disease have been accused of ``faking it'', trying to get out of homework and generally trying to beat the educational system. Educators need to fully understand all of the neurological and psychiatric implications of Lyme Disease and they need to understand that the children would much rather be well than to be sick.
Whenever you deal with a person with a disability you should provide them with an educational program that not only meets their needs but also provides them all the experiences and opportunities that a child without disabilities would encounter.
Children with Lyme Disease should lead as full and as normal life as they are capable given their individual symptoms and the severity of those symptoms at any given time.
The second federal law that is applicable to students with Lyme Disease is Section 504 of the 1973 Rehabilitation Act. This is not educational law. It is primarily civil rights legislation that prevents students from discrimination, if they have some type of disability that substantially limits the child's ability to learn.
School districts and parents together can decide which of these codes and format could best serve the child. While there are whole day workshops on the differences and similarities between Section 504 and IDEA I will attempt to highlight some issues to keep in mind.
As a former public school special education administrator I based the decision of whether to provide service to a student under Section 504 or IDEA on the projected outcome and level of service that could be reasonable assumed for a given student.
For example if a child only need some classroom accommodations and some home work modifications that could be performed by the regular classroom teacher I would prefer to see that child served under Section 504.
While Section 504 requires a written plan signed by the parent, as does IDEA, there are far less procedural issues and students can be served faster than through IDEA in general.
The written 504 plan itself is less complicated, faster and easier to write than an IDEA plan. Parents need to remember that all IDEA students are 504 students but not all 504 students are qualified under IDEA.
There can be some cases that that 504 students would not qualify under IDEA but these cases are rare. However, students with Lyme Disease often fit into these rare situations, primarily due to their ever-shifting medical and educational condition.
In general any service or program that can be delivered through IDEA and also be delivered through Section 504. In most cases districts would prefer using IDEA rather than Section 504 since there is no state or federal financial aid available to school districts through Section 504.
As I mentioned above, as a special education administrator, I would prefer that a child who would need special transportation, tutoring or other services that would increase their cost of education, be handled through IDEA.
If a student's needs can be met with accommodations and modifications that do not involve extra expenses to the school district, I have always felt that Section 504 was a quicker way to go without compromising the quality of service provided or the student's/parent's due process rights.
Parents basically have the same ``Due Process Rights'' if they become in conflict with their school district with IDEA and Section 504. Most state departments of education use the same conflict resolution procedures for both IDEA and Section 504.
You need to check these state procedures with your state department of education. Ultimately the United States Department of Education, Office of Civil Rights will hear both IDEA and Section 504 complaints against school districts. You can call your state department of education to get the address and phone number of your nearest U.S. Department of Education, Office of Civil Rights.
If you are reading this and saying to yourself `` This seems fine if my child is in public education but my child attends a private or religious school''. You are correct in thinking that all of this is may not apply. Times are changing. Since the ``1990 Americans with Disability Act'' the rights of all students, public, private, religious and even home schooled children have been expanded through various court cases.
I recently read a federal court decision in which the judge reinstated a preschool child with disabilities back into a private preschool program that had recently dismissed the child.
Most states have child advocacy organizations that can provide some guidance in conflict resolution or direct you to where you can obtain legal advice.
This site contains the entire 1997 edition of the Individuals with Disabilities Education Act and Regulations, which can be downloaded and printed.
The second site is http://www.504idea.org/ This site contains the entire text of Section 504 of the 1973 Rehabilitation Act (which again, can be downloaded and printed) and gives a detailed comparison between IDEA and Section 504. This data will make you an informed participant when making educational decisions for your child.[end quote]
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