• ADA Home Page - www.ada.gov - Information and Technical Assistance on the Americans with Disabilities Act

• Typical instructions from a school manual:

4. Regarding chronic illness, parents should submit a doctor's note to the attendance office indicating the nature of the chronic illness and how it may affect a student's school attendance. Chronic illness notes will be kept on file from year to year - they need not be renewed annually. The doctor's note should be filed with the school at the beginning of the school year or at such time when a chronic illness is identified. After a doctor's note has been submitted to the school, parents must verify each absence related to the chronic illness by submitting a doctor or parent note to the school. Any parent/doctor note that relates to chronic illness must be specified in nature, i.e., the note must state the chronic condition as the reason for the absence. Should the status of the chronic illness change, the parent must notify the attendance office.

• A letter to a parent whose school-age daughter suffers from KTS:

This is pretty typical of how most schools approach chronic illness.  You need to get your daughter on a 504 plan, described above.  As one of the conditions of the 504 you need to specify how you want chronic absence handled.  Makeup work, a more lenient timetable, etc., can all be specified in the 504 plan.

My son had this same problem.  I can't say we ever really resolved the  primary problem, and he had to drop out of AP classes in high school because you just can't make up chemistry labs.  The school worked with him as much as possible, though, on absenteeism.  I did not go thru the attendance officer at the school; I went thru the school nurse.  If he was ill and needed to miss, I phoned the school nurse.  Then I would circulate an email to all his teachers letting them know of his absence.  We had a folder in the school office where teachers would drop any assignments, etc., and I would pick them up in the afternoon. 

When we established the 504  we used one letter from a vascular clinic and literature from the www.k-t.org web site describing KT in general.    That took us thru 4 years of high school.  Tell them it isn't curable, and you won't have to re-apply each year.  One 504 will last her a lifetime.

I have been extremely active in school and got to know teachers and administrators.  Get your paperwork in place, then prepare to advocate for your daughter.