OSF Children's Hospital

Cystic Fibrosis at School School_kid

Many patients and families are concerned about having Cystic Fibrosis and attending school. When those with CF attend school, accommodations may be helpful. Your CF team will 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 willing to do a school visit which could consist of visiting the classroom and talking with classmates; meeting or talking with teachers, school nurses, or school administrators; or attending an IEP or 504 plan meeting. A school visit allows the CF team to explain CF, to explain the challenges of having CF, to help identify accommodations, to answer questions, and to provide support. If you are interested in a school visit, please contact the CF Clinic.

Below you will find some general tips for attending school with CF. Much of the information is from the Cystic Fibrosis Foundation website, and the links are to specific Cystic Fibrosis Foundation webpages.

Elementary School through High School:

If you are interested in pursuing accommodations through a 504 plan or an Individualized Education Plan: contact a teacher, administrator, or school nurse and ask for a 504 plan or IEP evaluation. You can ask your CF Center for a letter from your doctor explaining how CF affects your child and identifying accommodations that may help. Your CF care team may have ideas about how the school can help meet your child's learning and health care needs. Please refer to the following document for further information on accommodations through an IEP or 504 plan, on not getting requested changes from your public school, or on accommodations at private schools: Individualized Education Programs (IEPs) and 504 Plans.

Possible Accommodations: boy-with-water

  • Allow the student to carry water at all times. Allow student to drink water at his or her desk or exit the classroom for water.
    • It is recommended that those with CF do not use drinking fountains as they often contain bacterial that is harmful to those with CF.
    • During exercise, encourage the student to drink 6 to 12 ounces of fluid every 20 to 30 minutes.
    • Allow the student to drink sports drinks with added carbohydrates and salt
    • Encourage the student to avoid drinks with caffeine, which can increase fluid loss.
    • Allow the student to carry snacks. (Those with CF have high calorie needs and should eat three meals and three snacks daily.)
  • Allow the student to stay indoors if it is colder than 32 degrees Fahrenheit. (Cold weather can make it difficult for those with CF to breathe.) If it is hot outside, allow the student to carry water or a sports drink.
  • If necessary, give the student time during the school day to take medication or to do airway clearance therapy.
  • Allow the student to take their own medications like pancreatic enzymes. (Some schools allow students to carry their enzymes.  However, other schools require students to go to the main office or nurse’s office to take enzymes.  Always take enzymes before eating.)  It is recommend if the student does not want to miss social time (lunch/recess) to take his or her enzymes, that another plan is created.
  • If preferred, allow the student to clean his or her hands with alcohol-based hand gel at his or her desk.
  • If the student has a documented illness or hospitalization: allow the student extra time to turn in classwork, homework, or take exams; have a plan to get the student classwork, homework, or a tutor; provide audio recordings, video recordings, or notes of missed; and adjust or waive attendance rules.
  • Allow the student frequent/unlimited access to the bathroom. (If the student prefers, possible access to a private bathroom.)
  • Create a school medical emergency plan.
  • If necessary, determine a plan for mucus clearance during physical activity.

Suggestions for Schools (if preferred by the student and family):

  • Help the student feel comfortable about going to the bathroom when needed.
  • Avoid drawing attention to the student when she or he is coughing.
  • Avoid drawing attention to the student if she or he passes gas frequently.
  • Encourage the student to keep a six foot distance from others with a cold, flu, or an infection in all settings, especially indoors.
  • Encourage everyone to wash their hands by making soap and water and/or alcohol-based hand gel readily available in the classroom. Cleaning hands is particularly encouraged after using commonly shared items (e.g., pencil sharpener, lab equipment, etc.).
  • Encourage all students to avoid sharing personal items such as straws or eating utensils.
  • Encourage all students to cover their coughs or sneezes with a tissue, throw the tissue away immediately, and then wash or clean their hands. If a tissue is not available, encourage students to cough or sneeze into their inner elbow.

College/University/Boarding School:

It is recommended that you communicate with teachers and professors. It may be helpful to introduce yourself at the beginning of the semester/class and explain CF and your needs. It is important that your teachers understand that accommodations/changes to classroom rules/policies are medically necessary instead of an excuse for not attending class or not completing an assignment.

Accommodations for College college-student-on-laptop

Accommodations that may be needed when living at school:

  • If needed due to health, provide the student with a certain type of dorm room (ex. a private room, a room with a private bathroom, or a room with air conditioning).
  • If necessary, change the student's required number of class hours per semester. (However, this change could affect the student's health insurance coverage.)
  • If necessary, change class attendance rules: giving the student additional options like online classes or attending class through live video, etc.
  • If necessary, change student's physical education requirements.
  • If the student has a documented illness or hospitalization: allow the student extra time to turn in classwork, homework, or take exams; have a plan to get the student classwork, homework, or a tutor; provide audio recordings, video recordings, or notes of missed; and adjust or waive attendance rules.
  • Give the student a chance to finish coursework after the course has ended, if much of the semester was missed due to a documented illness or hospitalization.
  • If necessary, provide the student with on-campus housing or parking.  

If you cannot get changes from a college, university or vocational school, you can file a complaint with the school. Your CF care team can assist with this process. You also can report violations of Section 504 to the U.S. Office for Civil Rights.

10 Things I Wish I Knew Before Coming to College

Don’t forget scholarships!  There are many scholarships for students with CF: