Cystic Fibrosis at School

Many patient and families are concerned about having Cystic Fibrosis and attending school.  When people with CF attend school, they may need to make special accommodations.  Your CF team will help work with you, your family and your school to make sure you are able to maintain your health and well-being while attending school.

Your CF team is more than willing to do a school visit.  A school visit consists of a classroom visit, a professional visit (teachers and school administrators) or both.  A school visit allows the CF team to explain CF, the challenges of having CF, and answer questions.  If you are interested in a school visit, please call the CF Clinic.

Below you will find some general tips for attending school with Cystic Fibrosis and with some fantastic classroom resources for teachers and staff.

Basic Accommodations:

Your CF team will commonly recommend the following accommodations:

  • Ability to carry water at all times.  Drinking fountains may contain bacteria that is harmful to those with CF.
  • Carry snacks. We all know the importance of extra calories. Many schools will allow students to carry small snacks with them.
  • Unlimited access to bathroom.
  • Indoors if under 32 degrees F.  Cold weather can make it difficult for students with CF to breathe.
  • Access to Enzymes.  Some schools allow students to carry their enzymes. However, most schools require students to go to the main office or nurse’s office to take enzymes.  Always take enzymes BEFORE eating, and we recommend that social time (lunch/recess) not be missed to take enzymes.

IEP/504 Plan

Sample IEP Accommodations:

  • Give time during school day to take medicines or do airway clearance therapy (if necessary).
  • Adjust school rules to allow child to take own medicines, like pancreatic enzymes.
  • Have plan to get homework or tutor when child is ill or in the hospital.
  • Give audio or videotapes of missed classes.
  • Adjust or waive attendance rules.
  • Gives access to private bathroom, perhaps in nurse’s office.
  • Don’t limit access to bathroom or water.
  • Have  school medical emergency plan.

College/University/Boarding School

Accommodations that may be requested when living at school:

  • Provide student with certain type of dorm room, like a private room, or room with private bathroom or air conditioning, if needed because of health.
  • Change the student’s required number of class hours per semester. However, this change could affect the student’s health insurance coverage.
  • Change class attendance rules, giving student other options like Internet, video, etc.
  • Change student’s physical education requirements.
  • Plan to change project due dates or test dates if student is absent due to illness.
  • Plan to give student notes from class or class audiotape if absent due to illness.
  • Give student a chance to finish coursework after the course has ended, if much of the semester was missed due to illness.
  • Give on-campus housing, parking.

Getting Accommodations in School

  • Goal is education for you or your child
  • Request and work with the school to get a written IEP
  • CF care team can help
  • If changes are denied:
    • Public School
      • Contact your state education agency and request mediation
    • Private School
      • Contact US Department of Justice to file a complaint
    • College/University/Boarding School
      • Contact the school and file a complaint or report a violation of Section 504 to the US Office for Civil Rights.