Problems With The School, Hipaa Release

[dilettantesteph]

I hope that someone will be able to offer some good advice here.

 

My son is a junior in high school.  We have had all sorts of problems with his diet.  He can get sick even from gluten-free certified foods, so that the only way to figure out if he will be made sick by a food is for him to eat it and see.  When glutened, he has terrible brain fog and goes from near the top of his class to failing everything.

 

Last year he missed a ton of school, but was able to make up for a lot of it when returned and in summer school.  They were very supportive and helpful.   I guess that they decided to crack down on that this year.  He's been out again, but this time, he has recovered a lot more quickly.  We learned some lessons about the diet last year that we were able to apply this year.  He still missed the end of his first semester. 

 

Normally students are allowed one day to make up work for each day missed.  They have decided that doesn't apply for long absences and he has received zeros and Fs for his first semester, although he did do and hand in about half the work at an A level.  He has a lot of work completed at home that they will not accept towards his grade like they did last year.  Now they say that deadlines have passed so that it cannot be handed in.

 

They want us to sign a HIPAA release form to allow their doctor to speak to his doctor to make a plan.  His doctor says that their doctor twists her words in outrageous ways and advises against it.  We didn't get a 504 plan for that reason.  They would not give us one without the HIPAA release signed.  We sought out an attorney and were told that was within their legal rights.  We also spoke to our local government representative who said that there was nothing they could do.

 

We have to decide what to do now.  The high school seems to be an unsupportive learning environment for him.  He is old enough in this state to leave school and do high school equivalency testing.  He did very well on his PSAT and was taking advanced classes so has already learned the content tested.  We are thinking of having him attend community college for a year and then apply to university.  We are thinking that would be a better learning environment for him.  The cost is within our budget. 

 

How does it compare applying to a 4 year college from community college, hopefully with a good performance, or from high school with a poor performnce?

 

 

[kareng]

The stuff I have learned about Community College classes, bad grades one semester of HS and state University-

Good grades in CC show you have buckled down and grown up, which most Universities like. You might talk to the admissions counselor at the places he might want to go. State schools are more likely to accept the credits and forgive the stupid high school semester than places like Perdue or Princeton.

I say " stupid HS semester" because most of them don't really care why it was bad, if it was just 1 or 2 semesters. They just like to see the improvement. Means this kid is less likely to have a stupid party semester at their school.

You will need to talk to the admissions counselors of a particular " school". For instance, Engineering programs. They may not accept cc math for instance. They may not accept him directly into their program but will consider him after 1 or 2 semesters .

I have to run right now. But I'll check back. And add anything else I think of.

[mamaw]

sorry  your  school is  so  rotten....there  are many of  them....Have  you  considered  a  private  school?  Home  schooling? We too  have  never  had  a  problem  with  the kids  being  celiac  until  high  school......it  appears   kids  in  high  school skip  &  miss  a lot  of school  so  all pays  for that!

I  honestly  think  home  school  would  work out  for him..... I do  know  many  very  sensitive  celiac  students  who  have  had to do  just  that (home school) because  of their  having  reactions to  many  food  issues including  corn, soy ....almost  impossible  to hid  from corn or  soy  in  the school lunch program.....

It  doesn't  seem like the  school is  getting  it.... what  does the school nurse  have to  say?  The  school is  within  it's  rights but  still very  sad....kids  who  get  kicked  out  for  drug  possession can attend  an  after  school program  to  get  a diploma , or  kids  who  cause  fights  & bully  can do the  same  but  a medical  condition  doesn't  cut  it  for  an  after  school  program....or  any  help in  acquiring  a  diploma.....

hugs  to  you.....I  would  be  so  angry I would  pull;l  that kid  out  of school , home  school &  send  him off to  college... I'd  prove  he  is worth  saving.....

 

hugs

[1desperateladysaved]

Home school does have many options these day.  There is public online education.  There are other online schools. There are video options.   If he is in the top 10% of his class and gets post high school grades on standardized tests, there is PSEO.  One can also do online college or study and take clep tests.  All the best to you and your son!

 

I can field more questions on homeschooling if anyone is curious.  I have been in home school over two decades!

 

 

D

[simplemom]

I agree about considering homeschool to finish out this semester if possible. If within your budget and if there are other homeschoolers in your area, there may be tutorial classes in advanced subjects he could attend 1-2 days/week. There are also computer based curriculum options for math. There are also curriculum boxed packages written to the student at that level. It sounds like your son is bright and would do well self learning with some direction from you and outside resources. In our state, a child has from July 1st of one year to July 1st on the next to complete 180 4 hour school related instructional days. If the laws are like that in your state, your son could work into the summer or on the weekends if he is sick during the regular public school days.

[StephanieL]

Did you call the OCR and ask if they can require you sign a HIPPA form? I know we've talked about it before but I ca't remember.

 

Sorry it's still such a pain

[dilettantesteph]

Thanks to all who gave helpful comments.  This is going to be difficult.

[frieze]

it appears it is actually your doctor that is the problem.  I do think that HIPAA can be limited to a certain

topic.  There is no need to give the school system carte blanche on his whole record. 

the fact that he is dx, and is considered hypersensitive should be enough.  I am guessing the school is calling it psychological, even if they aren't saying that to you, I would ask for equal transparency and get a look at his SCHOOL records.

[GF Lover]

There is a variation to the on-line School thing.  My son does this and he is in his Senior year.  His School is an option to the City School System.  He goes 2 hours a day and does additional work at home on-line.  They are completely flexible with the program.  For instance, when the kids get a job, they work with those hours and coordinate school work.  They will even let a kid do mostly on-line if they have an issue.  Here's the great part.  When I researched it I found that there are 3 levels of a high school degree.  The GED is a level 1, On-line schools are a level 2 and High Schools are a level 3.  These part time schools are a level 3 with graduation ceremonies and all.  These school were typically used in the past for problem students but not anymore.  My son takes his accelerated courses and incorporated a college course this year. You can also transfer at any time of the year just like transferring to any other school.  It might be something for you to look into.  I never even knew this school was in our City. It might be just what you are looking for because they DO look at the transcripts and want to hear the issues at hand.  Check with the School District to see if they have something to offer.

 

Good luck Steph

 

Colleen

[dilettantesteph]

  I do think that HIPAA can be limited to a certain

topic.  There is no need to give the school system carte blanche on his whole record. 

 

Nope, they say they have to have carte blanche.

[dilettantesteph]

His school doesn't  have an online program.  We have spent some time negociating.  I see now that it isn't a problem with the diagnosis.  They don't believe that the symptoms are enough of a reason to miss school.  His brain fog is so severe that he can't complete homework or learn anything, but they don't understand that.  He is a diligent student and would attend school if he could.  He has tried in the past, but fails any tests that he takes, and doesn't understand and can't complete homework assignments.  I am afraid that no amount of information from the doctor can convince them of that.  They want the clearance to talk to her so that they can say that she agrees with them.  I have handled this directly and said that she will provide them with what they need in writing or we will withdraw our son from school. 

 

I believe that it is damaging to send a child to school who is so sick that he fails at everything and feels terrible and keeps having to run to the bathroom for what's coming out at both ends.  He is old enough now that I don't have to do it anymore.  I really hope that we have the diet figured out enough so that it won't be a serious problem in the future, but if we have problems again, he needs support, not doubt.  He is a really smart kid and won't  have problems with passing entrance exams for college, attending a year there and then taking a high school equivalency test.  The community college allows those without a high school diploma to attend very nearly full time.  If he gets sick, he will have the option to withdraw.  We still think that high school is the best option and we are still working with administrators to come to an agreement.

 

For those doing 504 plans, there needs to be some definition of who decides if your child is too sick to attend school.  In our case the school wants to have that power.

[frieze]

GET A LOOK AT HIS SCHOOL RECORD, get a lawyer involved if you must.  I would bet a weeks pay they are going for psych or some conversion disorder situation.  YOU DON'T  want that on his record!

[StephanieL]

Before you start jumping through all the hoops of the school, I really would call the OCR to verify if you need to sign away his HIPPA rights.    What authority does the school have to determine if he's to sick? Are they all M.D.'s with the training to make that determination?

[africanqueen99]

I'm so sorry your son is having all these issues with adults that are supposed to be supportive.  It's just so unkind that they're not willing to work with him.

 

Frankly, I'd seriously consider an equivalency exam and then roll into either community college or university.  Because university professors make their own rules and regulations for their courses it might be beneficial for your son to speak with them at the start of the course.  That way everybody is on the same page regarding homework and exams.

[dilettantesteph]

GET A LOOK AT HIS SCHOOL RECORD, get a lawyer involved if you must.  I would bet a weeks pay they are going for psych or some conversion disorder situation.  YOU DON'T  want that on his record!

 

That has occurred to me.  In 5th grade when he first fell ill he was taken to the school social worker without my permission.  He was throwing up every morning before school and instead of celiac disease, they assumed anxiety.  When I found out, I put a stop to it.  Interesting that they would put more confidence into the diagnosis of a social worker than a board certified in her area of specialty MD.  More recently, anxiety keeps being brought up by the school administrators.  What is the impact of having that on his record?

[frieze]

it may well go on to college with him.  and I don't have the greatest trust that those things remain as private as they are supposed to! And since they have done it already, and you got "in their way" this may go a ways to explain their attitude, ie " our way or the highway".....do you have a psychologist you trust?  that you can have him seen by privately?

[dilettantesteph]

He hasn't been seen by anyone for mental health issues since that 5th grade social worker.  Perhaps they think that he should be.  I think it is mainly that they want to get a system in place where he attend full time.  They need funding to afford to give him an education.  They don't get paid when he isn't there.   The problem is that when he is sick, his abilities are so different than when he is well.  They can't seem to understand that.  I hesitate to remove him because I am worried about the long term impact of that decision.  I am still hoping that we can resolve the probem.  We really need him to be able to not attend school when he is sick, and then work like crazy to catch up when he isn't sick.  They want a permanent solution involving full time attendence whether sick or not, which I feel would not be ideal and may follow him to college.  They feel that the working like crazy to catch up situtation will be too stressful for him.  They don't realize that without gluten in the diet, he can handle the stress.  We keep negociating.  Meanwhile, I will work like crazy to maintain a good diet.

 

They tried to enforce the development of this plan by giving him Fs and zeros and telling him that he can't make up his work.  That created a big negative impact that made it hard to deal with rationally, but I think I am calming down now.

[1desperateladysaved]

Oh, groan, you work so hard.  I recommend a grain free diet to try to stabilize the situation.  I use SCD.  Meanwhile, I will check with a friend that does public online school and see if it is a local thing, because I don't think it is.

 

D

[dilettantesteph]

Grain free is exactly what we did to achieve his present symptom free state.  I got him out of there today.  We have several options to explore and I have several appointments scheduled in the next week or so.  I am confident that we will figure out a good solution and that we did the right thing.

 

I think that the school was just trying to get him set up in a program that would work for him.  They don't understand :

gluten in the diet = sick,

gluten out of the diet = well

They see child having problems in school and think that he needs an easier program.

 

Last year he was sick for even longer.  He was told that he could make up courses in summer school if he took Fs in them because summer school is only remedial.  We were assured that those Fs wouldn't be in his GPA, so that repeating the year was not the best option.   I got his transcript.  Guess what's included in the GPA. 

[1desperateladysaved]

Grain free is exactly what we did to achieve his present symptom free state.  I got him out of there today.  We have several options to explore and I have several appointments scheduled in the next week or so.  I am confident that we will figure out a good solution and that we did the right thing.

 

I think that the school was just trying to get him set up in a program that would work for him.  They don't understand :

gluten in the diet = sick,

gluten out of the diet = well

They see child having problems in school and think that he needs an easier program.

 

Last year he was sick for even longer.  He was told that he could make up courses in summer school if he took Fs in them because summer school is only remedial.  We were assured that those Fs wouldn't be in his GPA, so that repeating the year was not the best option.   I got his transcript.  Guess what's included in the GPA. 

I couldn't guess.  It sounds disappointing.  I am glad for progress in his health.

 

I did find that my friend that did online high school used a school called "Connections" which is in many states. I think they have required attendance daily as regular school.  Something self paced may be better for you.   I guess I thought  that you were saying that he was getting glutened accidentally at school.    I am hoping you will be abl;e to stablize him and am excited what he will be able to do with school and life after that.

 

D

[dilettantesteph]

It looks like here in New York, colleges do not accept online diplomas.  The ones I called did not.

 

At least his administrators are not as bad as these ones who gave parents of a dying child in a coma in hospice care grief over not taking standardized tests: Open Original Shared Link