Topic: Help! School requesting all medical records
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
I am working on reading about our rights with IDEA and all, but having trouble pulling out what I need right now.
Director of school district EC is requesting many medical records from our LLMD.
Feel this is not kosher as we have provided detailed info from dr on symptoms, treatment, and prognosis.
I signed a release after a long brain-draining mtg about both my kids and regret such a broad release. I can revoke at any time, at God Bless LLMD office who called before sending anything.
any way, Administrators and teachers are not understanding or believing my kids are as sick as they are.
This is, in my opinion, because they have never done home-bound tutoring for more than 6 wks and are opposed to doing rest of yr, which is indicated by their condition.
I am thinking about releasing yesterday's treatment notes. Daughter picc, 2 wks into 4or more months. Son discussion on picc or not, decision increase orals. To give them something to pacify and show good will rather than have another interval of veiled nastiness. We have kids with leukemia that attend school! Why don't you homeschool?
I am loathe to dislose psych meds as director at one pt said,"We have parents who want kid tutored because they have anxiety."
Should I even let them have info on what exact abx taking? Director in midst of heated discussion where I was resisting handing over records, threatened to require dr of their choice to do second opinion. We go to Charlotte Dr. J and I imagine they would easily find dr. to disagree with aggressive treatment.
posted
Can't tell you what to do, but it seems dangerous to me to hand over records to people who already have a bad attitude. Be very careful. Maybe someone else will come along with experience in this, or maybe you could talk to an attorney.
I don't understand why they need this info except to cause trouble for you or your doc. In the meantime, I hope the doc's office has been requested to send nothing until you have looked into the problems it could cause.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Well, while you are waiting for someone to come along with actual experience, maybe do a search of the archives. I know there have been problems like this before with schools.
Also, here is a url that will take you to a yahoo group for parents of lyme kids. Seems like they might have some experiences with this.
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am by no means an expert. I have been following this thread for awhile wondering where it was going. I just cant see the 'good' in turning over medical records to a school. What can they do with them that would be to your advantage? Sounds like they are on a witch hunt and you are their target. IF your kids were infectious to the other kids, maybe then, but not for this, unless they think something that is NOT!! Could you ask them why they want them, for what purpose? Course they are or might be less than honest. Be careful here, dont give them ammunition to hurt you and your kids. This just isnt good, no way!!! Keep your records private, they would!!!Just remember I am --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Please do not turn over the records. Teachers and admins are not better equipped to evauluate your children than the llmd.
Our llmd wrote the school a letter with diagnosis, prognosis and accommadations needed. My son has a 504 based on this. It is not perfect, but the school does sometimes honor it.
I now work directly with the superintendant. He and I have a good relationship and leave out the legal stuff the IEP/504 people dwell on. We focus on what my son needs, an education and what the school needs, to keep costs down. We both compromise. My son has time, flexibility and no penilty for being late or absent. My husband and I did/do the tutoring.
I make it sound easy but it was a huge struggle for two years. This year is better. Maybe my better functioning brain is getting the message across to the teachers better.
posted
I'm so sorry that you are going thru this. I had quite an uphill battle with my school, and one of the things that I learned from it was that you should never allow them to have access to your doctors or to all of the medical records.
We learned the very hard way that they can take the doctor's words out of context and twist them around to fit their argument against you.
Once we learned that this was going on, we revoked the consent form and told them from now on any requests for info about my health would be thru me and my parents. They already had more than enough documentation of the nature and severity of my illness that we had offered them even before the consent form.
As far as them wanting a second opinion from their own doctor, I'm almost positive that you aren't legally required to do that.
From my experience, they throw a lot of things at you at once, and they say them with authority, so you leave the meeting feeling like you are obligated to do all of those things in order to get the help that you need. However, when I did some research, I found that most of what they wanted wasn't required, and really it was them digging for ammunition.
Posts: 56 | From RI | Registered: Aug 2003
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Do not give the records to the school.
They are not docs and don't need any amunition to use against you .
All schools do is make terrible mistakes,they can't even deal with things like touretts,let alone Lyme.
Be very careful that they don't get child services involved,as they are only evil anti american, steal your rights, violate the constitution ,destroy the USA evil bastards.
I am not a lawyer and what I say is only my opinion.
MADDOG
Posts: 4085 | From Ohio | Registered: Oct 2000
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Thank you doesn't describe it.
Everyone response so helpful. Lymetoo and Lou for looking out for me.
Thinking is muddied and I was feeling that I should revoke permission for records, but not sure. Too much going on at once. Anyway, I will revoke it today.
School adm. called to say kids have til Dec.12 to get 1st qtr wk in. Quite gracious.
posted
A letter of diagnosis, and reccomendations from your Doc re: accommodations.. a reccomendation for home tutoring due to medical necessity is ALL you need.
period.
They are not qualified to make medical decisions.
If they do not honor the doctor's reccomendations, then THEY are in violation, not you.
Schools can be very adversarial in Lyme, but you have the law on your side, and you should let them know clearly, and politely if possible.. that you know that.
They sound adversarial, and just want the records for ammunition against your case. Is you child classified?
If not, she certainly could be... but regardless for now..
I would revoke permission and provide them with an updated letter from the MD with just diagnosis,
(partially treated disseminated Lyme disease works well, can list co-infections also.)
perhaps some symptoms (tho this gets dicey, because they can latch onto that info..so if you Doc mentions symptoms, he should be sure to say in EVERY letter that this disease fluctuates, and also that symptoms are inclusive but not exclusive, stuff like that)
and also including the accommodations NEEDED..
should not use words like 'may need'.. but NEEDS or is necessary.
I would not disclose specific medications used. You don't have to say anything more than that she is in treatment. I would not mention psych meds.
Use medical terms when you talk to them..
like 'diffuse brain function die to chronic infection and treatment'
or any term that nmedically addresses a symptom, trying not to use the word 'Lyme' that often...
inflammation, chronic pain, slowed mental tracking.. light and sound sensitivity..
things like that.
All these effect a student's ability to learn and should be EXCUSED and accommodated due to federal protection laws, regardless of the cause of illness.
Good Luck, you are in the right and are the main advocate for the kids rights. If you become more familiar with the law inder IDEA, you will feel more confidant in dealing with them..
and rule of thumb -- never tell them more than you have to to get what is needed...keep Doc notes clear and to the point. This is bull. Would they question a Lukemia diagnosis? Are they or the school physician qualified to question this diagnosis? How many cases of chronic Lyme have they treated to efficacy? None....................................... It doesn't help to get mad, or flustered..but does help to have firm resolve and know your rights. They will pick that feeling up and likely back off.
I had a similar situation, and just got notes each semester with the diagnosis, medical necessity to be home..and need for home tutoring.
I fought the same fight, and knowing the law changed the playing field dramatically.
My son was out of school due to the illness for almost two years.
Yes, we had home tutoring the entire time (when he was up to it) despite the harassment from the school admin.. when push comes to shove they cannot deny it, and could get into trouble if you called an Impartial Hearing, had notes from Doc.. and they were caught not honoring your child with her right to FAPE (free and appropriate public education).. you don't have to be angry to get your point across, if you calmly say and put in writing a few of the phrases from IDEA that apply to your child..they will 'get it'.
Oh, and document EVERYTHING. Jot down phone call info, and put as much in writing as you can when you need to communicate with them on this. There are probably other Mom/advocates in your area..that are working with Special Ed Law with other conditions, but they will at least know the law and may be able to help you know how to apply it. I suggest you stay a few steps ahead of the school even when things seem to be going well. Hassles there can really disrupt your life and your child's recovery.
and never feel that what is actually your child's right is 'doing you a favor.' (IMO they should be supporting you and she any way they can!) ..
Hope something here helps....
Mo
[ 03. December 2005, 07:00 PM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Giving anyone access to medical records except, perhaps, your attorney seems highly risky. Today things can be turned upside down and inside out to bit you instead of help you.
Things have sure changed. Im over 60 but when I was 13 I was diagnosed with Rheumatic Fever even tho I had zero heart symptoms.
They were so afraid of me that they made me be a home student for a whole year and when they did let me back I wasnt allowed to do ANYTHING physical my entire high school years.
Every doc since has said they seriously doubt I ever had RF cuz of no signs. Who knows it could have been lyme even back then. I always was a sickly kid.
Posts: 561 | From connecticut | Registered: May 2004
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posted
Ditto. I don't think the school/school district would have a legal right to request medical records. The government does if you're applying for disability (which homemakers are not eligible for; our own doctors can assume we've worked at a "paying" job so I went through applying, and then feeling a little bitter because of the energy spent). Are they asking in conjunction with 504?
My advice, DO NOT sign anything! like a consent for records release, as from one doctor to another (but in this case from doctor to school or school disctrict).
And DO NOT take a copy of the medical records to the school yourself. If they must have them, and I can't think of any possiblt reason they should, there should be a formality that is legally legitimate, such as a form you sign where you are not the go-between but it is between the school/district and the doctor. ASK FOR A FORM. Then you have something to check on with legal counsel.
When my daughter needed medication at school, there was a FORM her doctor had to fill out. If there is form for that, there should be a form for anything medical. When my kids had asthma and had to be excused from taking P.E. class, the doctor only had to write a NOTE that I took to the school for their files there.
At NO TIME did my school (or the district) ask for medical records on other conditions; Lyme should be no different.
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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posted
I am a school nurse and sit in on these meetings. All the school needs is some kind of documentation. We do have to have something from a doctor,we cannot take a parent's word that their child is sick. The school does not need medical records though. And they do not need to know the name of the medications.Having a doctor say that the child is under care is enough. Have your physician put in writing that your child is under their care and what they will require. Have him/her write that they are unable to attend school due to health reasons and will require to be taught at home until further notice.Hand that to the school. If your school does not accept that,I would let them know that you will be seeking legal advice. I can't imagine it would get to that point.The public school must provide an education. I am a nurse in the public schools but, also a mother of a child with Lyme who needed five months of home teaching so, I do understand both sides. Best of luck.
Posts: 70 | Registered: Nov 2001
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As a social worker who was an advocate for children w/ disabilities, I too like the nurse who posted before me, would tell the parent documentation of the disability on the doctor's letter head is enough. Enough as far as what the school is legally allowed to ask for.
When we knew the teachers and administrators need some education 101 on any disability, condition or illness, I brought a folder full of information sheets for them to keep. For instance telling them what Lyme is, the symptoms, the treatments, and info particularly for children w/ Lyme.
Always document your correspondance in a journal and follow up w/ a memo after meetings. Let them put in writing to you what they feel they can keep asking for.
Good Luck and Merry Christmas!
-------------------- Mitakuye Oysain (we are all related) Posts: 34 | From OH | Registered: Nov 2005
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