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Hi, We have a meeting to determine if my son 'qualifies' for a 504 plan tomorrow. The school is pushing an informal list of strategies to help my son instead of a 504 because standardized testing shows he is within normal limits. My issue with that is that the testing was not done during an exacerbation. Also, It was done in a quiet, non-distracting room which does not reflect his ability in the classroom. They did not test attettion or memory. He is moving up to middle school next year and I feel we need something in place before he starts to fail. How do I convince them that he has a disability regardless of what the standardized test says and that his ability will fluctuate during exacerbations. Any suggestions would be greatly appreciated!

Thanks,

Debby

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Do you have a therapist or a doctor who can either appear at the meeting or send along a written evaluation of your son's condition and how it might impact his ability to function in the academic environment? Either of these would add "professional heft" to your position and help assure the school that you're not looking for accommodations that give your son an edge; your looking for accommodations that will keep him on level ground with his classmates.

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be sure to stand your ground on this!

 

a child does not need to have learning disabilities to get a 504! All they need is some form of HEALTH impairment which a PANDAS child has. Diagnosed Emotional liability can also qualify a child for a 504

 

I absolutely agree that a doctor's letter is important....if you dont have one yet, let them know you will provide it and get hold of the doctor ASAP to write it

 

many schools will try to block specialized accommodations as it means a bit more work for them. If needs be, find an advocate to appeal if you are denied. get every bit of info you can on PANDAS to provide to them as they likely do not have a clue!

 

info on the TSA website may help you, even tho a different criterion, yet so much overlap

http://www.tsa-usa.org/educ_advoc/education_main.htm

Edited by Chemar
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Hi, We have a meeting to determine if my son 'qualifies' for a 504 plan tomorrow. The school is pushing an informal list of strategies to help my son instead of a 504 because standardized testing shows he is within normal limits. My issue with that is that the testing was not done during an exacerbation. Also, It was done in a quiet, non-distracting room which does not reflect his ability in the classroom. They did not test attettion or memory. He is moving up to middle school next year and I feel we need something in place before he starts to fail. How do I convince them that he has a disability regardless of what the standardized test says and that his ability will fluctuate during exacerbations. Any suggestions would be greatly appreciated!

Thanks,

Debby

 

What will you be asking for in the 504 plan? What problems have surfaced in the past that you are trying to avoid by leveling the playing field with an accommodation?

 

I agree that an outside evaluation / letter / documentation is very important. It is also important to let the school know how the 504 plan will make your child even with the other children (not at an advantage), and how it will increase the teachers' ability to facilitate learning in your child.

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I brought a letter from the doctor, with diagnosis and explanation of possible difficulties and recommendation for modifications. They still balked at the diagnosis, but didn't dare refuse to offer accomodations. You need a letter to back you up.

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OK. This is coming from VERY personal experience. We have just settled on a Due Process case that carried on for 3 years, because of exactly what you are describing. It was very, very messy. We brought a 504 plan with us when we moved out of state, and our school district refused to honor the 504 plan. Instead, they created an informal list of modifications (actually in our case, we thought the 504 was in place, but at this point, it became irrelevant.)

 

As a result, there was never any requirement that the modifications be followed, and they weren't. It was a complete and total nightmare. When we moved here, he did not, yet have the dx of PANDAS, but did have 2 other diagnoses, which certainly qualified him.

 

For our Due Process case,we brought in the big guns...big named doctors who testified on our our behalf., but trust me, the case was very messy, dragged on an insane amount of time, very, very costly, and we were forced to place our son in a very expensive private school for 1 1/2 years while we fought them, because he crashed.

 

Get a doctor on board NOW. Make sure you have someone who will definitely support you (the first one we had, who made the dx, did not support us, in the end, and I can't stress that you make sure that s/he does,...really slowed down our case by 1 year.) I don't know who you use, but if you PM me, I will discuss it directly with you.

 

Anyway, you have to get a formal plan...504 or IEP...you decide what is really needed, although for an IEP, he does have to have a qualifying diagnosis...PANDAS can qualify under either Other Health Impaired (OHI) or Emotional Disability (ED).

 

Again, I cannot stress enough the importance of getting a formal plan. And, you will probably have to have a doctor onboard who really knows the disorder. For your child's sake, do not go informal.

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NVAmom,

 

How did your meeting go? We had ours last Thursday and after working tirelessly for months just to get them to meet with us, we were told our ds doesn't qualify for a 504. The whole meeting and the report on which they based it were a sham. The pscyhology intern they had assess him claimed anxiety isn't causing him to miss school, but when she came to our house to observe him, he cowered in the closet almost the entire time and spent the rest of the time clinging to me or hiding his head under his pillow. They even had the gall to tell us that we hadn't provided them with a letter from his treating doctor documenting his illness. We had provided them with two letters from our psychiatrist who has excellent credentials - one explaining the diagnosis and the other recommending accomodations. Nothing they said made sense, and we out-argued them on every point. By the end of the meeting they were saying, "Well, why do you want a 504 Plan so badly?" We ended the meeting by telling them we were contacting an attorney, but they had successfully run out the clock for this year. So, while I agree that having the documentation from your doctor (we even had ours participate in the meeting, but she could only stay on the phone for the first half), I now wish we'd had an attorney with us for the meeting.

 

I hope your meeting didn't go as badly as ours did.

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I'm reading all of this with great fear. We have a couple of years before pre-k but we have a meeting with the school districts early intervention program for his OCD. He's in the federal Early Steps program now for his behavior therapy, so the transition should be easy, but I'm hoping by being a part of the school districts early program we won't have these problems when it comes to the 504.

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NVAmom,

 

How did your meeting go? We had ours last Thursday and after working tirelessly for months just to get them to meet with us, we were told our ds doesn't qualify for a 504. The whole meeting and the report on which they based it were a sham. The pscyhology intern they had assess him claimed anxiety isn't causing him to miss school, but when she came to our house to observe him, he cowered in the closet almost the entire time and spent the rest of the time clinging to me or hiding his head under his pillow. They even had the gall to tell us that we hadn't provided them with a letter from his treating doctor documenting his illness. We had provided them with two letters from our psychiatrist who has excellent credentials - one explaining the diagnosis and the other recommending accomodations. Nothing they said made sense, and we out-argued them on every point. By the end of the meeting they were saying, "Well, why do you want a 504 Plan so badly?" We ended the meeting by telling them we were contacting an attorney, but they had successfully run out the clock for this year. So, while I agree that having the documentation from your doctor (we even had ours participate in the meeting, but she could only stay on the phone for the first half), I now wish we'd had an attorney with us for the meeting.

 

I hope your meeting didn't go as badly as ours did.

I am so sorry to hear about your experience. Are you appealing the decision. I worked on documenation until midnight last night. Before bed my husband asked me to recheck the date of the meeting.....I told him I was sure the meeting was Tuesday June 2.....Well the meeting is June 2...which is Wednesday. I will let you know how it goes tomorrow. I think I could use some accomdations myself :wacko:

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OK. This is coming from VERY personal experience. We have just settled on a Due Process case that carried on for 3 years, because of exactly what you are describing. It was very, very messy. We brought a 504 plan with us when we moved out of state, and our school district refused to honor the 504 plan. Instead, they created an informal list of modifications (actually in our case, we thought the 504 was in place, but at this point, it became irrelevant.)

 

As a result, there was never any requirement that the modifications be followed, and they weren't. It was a complete and total nightmare. When we moved here, he did not, yet have the dx of PANDAS, but did have 2 other diagnoses, which certainly qualified him.

 

For our Due Process case,we brought in the big guns...big named doctors who testified on our our behalf., but trust me, the case was very messy, dragged on an insane amount of time, very, very costly, and we were forced to place our son in a very expensive private school for 1 1/2 years while we fought them, because he crashed.

 

Get a doctor on board NOW. Make sure you have someone who will definitely support you (the first one we had, who made the dx, did not support us, in the end, and I can't stress that you make sure that s/he does,...really slowed down our case by 1 year.) I don't know who you use, but if you PM me, I will discuss it directly with you.

 

Anyway, you have to get a formal plan...504 or IEP...you decide what is really needed, although for an IEP, he does have to have a qualifying diagnosis...PANDAS can qualify under either Other Health Impaired (OHI) or Emotional Disability (ED).

 

Again, I cannot stress enough the importance of getting a formal plan. And, you will probably have to have a doctor onboard who really knows the disorder. For your child's sake, do not go informal.

Thank you for your response. Another great reminder as to why an informal model won't work. Embarassingly enough I had the date wrong. I knew the meeting was June 2 but was thinking that was Tuesday. Thankfully, my husband caught the error. I'll let you know how it goes tomorrow.

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Just a word on 504 and the re-certification of it and how it affects our kids. I am a special ed. teacher in the district that my son attends. He was dx in Feb. of this year. I had known that he was being impacted- tics disrupting others so treated unfairly as a behavior problem, ADHD severely increases w/ flare ups, too anxious to even start work for fear he won't finish, etc. However, he had two good teachers who worked to add modifications into his day, provide OT tools to help reduce tics or at least impact on others. Dr. and therapist recommended that he get an IEP or 504. I too was leaning towards this as he goes to the middle school next year and I wanted something formal in place to mandate accommodations be made.

An incident happened at school that infuriated me so I called the doctor that day and had her write up a letter documenting his dx and asking that she back me.

I brought the letter to the school, asked that a 504 meeting be set up which we did have. He is NOT on a 504 but an informal "student support plan" , it falls under "response to intervention" but is not a true legal plan. Due to his diagnoses he meets the criteria of being under the legal protection of 504 but the only way to get an actual plan is to prove that the school is in fact discriminating against him so that he can not have the same rights as other average students.

THe special ed director has come to staff meetings informing us that there should not be any 504 plans in the district because they are now only for those being discriminated against and since no one should be therefore no 504. It is not just to get accommodations anymore.

Maybe other districts are treating this differently but this is what we have been told. I really thought as a special ed. teacher I would have no trouble getting him what he needed but I'm shut out too. The diagnosis isn't enough.

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THe special ed director has come to staff meetings informing us that there should not be any 504 plans in the district because they are now only for those being discriminated against and since no one should be therefore no 504. It is not just to get accommodations anymore.

Maybe other districts are treating this differently but this is what we have been told. I really thought as a special ed. teacher I would have no trouble getting him what he needed but I'm shut out too. The diagnosis isn't enough.

 

I'm just a parent . . . not a teacher or administrator . . . but I've not heard this "interpretation" of the law with regard to 504's. In fact, I just came back from a meeting with my DS's IEP case worker, and there was no mention of any sort of "global shifts" in the world of academic accommodations, whether 504 or IEP, which I recognize are substantially different in their own rights.

 

Is it possible this is just this director's "interpretation" of the law?

 

Frankly, I've never really understood the unwillingness of some districts to agree to 504's (which do not automatically entail special school services and therefore cost the district nothing or next to nothing to grant) or IEP's when a kid obviously needs one to be effective in the school environment. The goal is to help EVERYONE . . . teachers, student, classmates, parents . . . have the most productive, successful school year possible. It really chafes me when bureacracy gets to make decisions of ease and expediency (and thrift) over what is best for the kid. :(

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Mom WithOCDSon,

Yeah, I don't know why they resist either. As a special educator, it is so annoying to put up with cuts or changes being made to my program when the higher ups don't even observe my program, don't understand it or have a concept of what my kids are like. Annoying how money is the only factor not the kids who should be the heart of it.

 

And yeah, maybe it is my director trying to interpret things in her own way but I know she also had an education lawyer in to speak with our administrators regarding the changes in Section 504. I tried to just research it on my own and did find an amendment went into effect Jan. 2009 but don't see it limiting but rather broadening the definition of disability.

 

If things get worse when ds switches to middles school next year, I'm not above taking him off meds in order to get him the services he needs. :lol: Off everything he might even qualify for an IEP.

Edited by becjonz
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If things get worse when ds switches to middles school next year, I'm not above taking him off meds in order to get him the services he needs. :lol: Off everything he might even qualify for an IEP.

 

Well, it worked for us! :P DS was given an IEP for OCD before we knew about PANDAS or began to treat effectively (with abx). By his "official diagnosis," they knew we were doing everything we could (therapy, psych meds) to meet the situation, basically to no avail, so they basically had no choice but to expand his accommodations and make social services available for him in the school environment, as well. Without the support of abx or steroids, I'd be willing to bet the vast majority of our kids would qualify for accommodations, no sweat! What I'm not sure of is whether or not the schools would specifically accept "PANDAS" as a diagnosis for those accommodations, or if, for at least the next while, we'll have to acquire those accommodations via alternative "labels" like OCD, TS or, as I think someone else mentioned, "emotional lability." :(

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