Working with Your Child’s Daycare and School

Everyday kid activities include going to daycare or school, staying overnight with friends, and going away to camp. Such activities let your child have fun while learning independence, building social skills, and giving them a sense of normalcy.

It also requires substantial preparation and planning on the part of their caregivers. Whether your child hangs at a friend’s house or goes to high school, you’ll need to talk to parents, teachers, and organizers of activities about infection prevention and control and your child’s treatment regime, and how vital both are to your child’s health.

Answering questions asked by schools and daycares

If you care for a child with CF, you’ll acquire deep experience answering questions from daycare workers, school teachers and administrators, coaches, and other parents. Common questions (with brief answers) include:

• Is the cough contagious? (No)
• Can’t they suppress their cough? (Sometimes they can, but they shouldn’t)
• Why do they need extra bathroom breaks? (Digestive issues)
• Are all these medicines really necessary? (Yes)
• What are enzymes and why are they needed? (To help with digestion)
• Why do they need extra snacks and extra salt? (To prevent weight loss, malnutrition, and dehydration)
• How will we handle classwork and homework during hospital stays?

You will also have to educate daycare and school personnel about the importance of infection prevention and control in helping your child stay as healthy as possible. You also may need to make officials aware of your child’s need to avoid construction dust, indoor allergens, dirt, perfumes, and other lung irritants.¹

Your child’s teacher may ask you to come to talk to the class about cystic fibrosis and why your child needs special changes to their school day.

Daycares and camps: Common issues

Daycare centers, playgroups, and play centers offer opportunities for learning, fun, and socialization for any child. As the parent of a child with CF, you’ll want to check the cleanliness of the facility beforehand, show staff how to give enzymes and medicines to your child, and teach staff and other parents about CF and your child’s special needs, particularly around infection prevention and control.

As your child get older and wants to attend a camp, you’ll need to conduct the same safety checks and educate staff.

School: IEP and 504 plans

An individualized education program (IEP) or 504 plan spells out how a student will be accommodated at school. These plans document things like how long absences, extra eating time, drinking water in class, or taking enzymes and medicines will be managed at school.

IEPs were established under the Individuals with Disabilities Education Act (IDEA) and 504s by the federal Rehabilitation Act of 1973. IDEA requires public schools to make free and appropriate education available to students with disabilities. Section 504 prohibits discrimination against people with disabilities if an organization receives federal funds. IEPs are generally used for students with a health condition that impacts their ability to learn, while 504 plans are used for students who need accommodations at school.

You can request an IEP or 504 plan for your child. Different school systems recommend one type of plan over another. Ask your school which plan will help your student the most. This is something you will have to do at the start of each school year. Your CF care team may need to send a letter to the school explaining how CF affects your child and recommend any necessary accommodations. Your school will hold a meeting to hammer out the plan with the parents, CF care team members, and the child if they are old enough.

What should be included in an IEP or 504 plan?

• Taking time at school for airway clearance
• Allowing the child to take medicines and enzymes on their own
• Plans for homework and tutoring during absences and hospital stays
• Giving access to a private bathroom, such as in the nurse’s office
• Allowing extra trips to the bathroom
• Drinking water during class

Keep in mind, private schools that do not accept federal funds do not have to follow the rules outlined by IDEA or Section 504, but they still must adhere to the Americans with Disabilities Act (ADA). You’ll have to talk with school officials, teachers, and other parents to find out how flexible the school is in meeting the needs of students with disabilities.²

Getting help with school issues

If you need help or have questions about school accommodations, the CF Foundation Compass service can help you find more information. Call 1-844-COMPASS (1-844-266-7277), Monday - Friday, 9 a.m. - 7 p.m. ET, or email compass@cff.org.