What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Cystic Fibrosis. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
A child with CF may be eligible for special education (an Individualized Education Program or IEP) under the Individuals with Disabilities Education Act (IDEA). If he or she requires specially designed instruction to address the unique needs that result from physical and/or mental challenges, an IEP may be needed.
- The IDEA is a federal law that requires public elementary and secondary schools to provide a free appropriate education to children with disabilities.
- Children with CF may be eligible under the “Other Health Impaired” category of IDEA.
- Services must meet the child’s needs and cannot be determined by the child’s eligibility category.
A child with CF may not be in need of special education (an IEP) in order to participate in the regular school curriculum. However, the child may still need accommodation(s) to access regular classes and programs, as well as extracurricular activities.
- Then, the child may be eligible for a Section 504 plan under the Rehabilitation Act of 1973.
- Section 504 is a federal law that prohibits discrimination against anyone because of a disability by any group (including public schools) that receives federal funds.
- A child is eligible for a Section 504 plan if he or she has a “physical or mental impairment that substantially limits a life activity.”
- Life activities include: caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.
What you can do
Have a clear understanding of the need for educational supports.
- Whether through an IEP, Section 504 Plan and/or emergency plan, the team should ensure that the child has the right interventions and accommodations to be successful.
- When creating the plan, ensure that the child’s school day is as typical as possible. View him or her as a child first who just happens to have a chronic health condition.
- Ensure that everyone who comes in contact with the child (including bus drivers, cafeteria staff and monitors, substitute teachers, faculty and administrators, coaches, specialists, etc.) understands and supports his/her accommodations.
- This understanding is particularly critical regarding:
- Access to food/drink
- Access to bathroom
- Carrying/taking approved medications such as digestive enzymes.
- This understanding is particularly critical regarding:
Examples of what an IEP or a Section 504 Plan might include for a child with CF:
- Allow for time during the school day for airway clearance therapy and taking medicines as needed.
- Adjust school rules to allow the child to take his or her own pancreatic enzymes, vitamins, and certain other medicines (as needed).
- The school plan should ensure that all who may come in contact with the child (including bus drivers, cafeteria staff and monitors, substitute teachers, faculty and administrators, etc.) understands and supports his/her accommodations.
- For example, the child may need to carry a note in his/her backpack with permission to carry and take medication such as digestive enzymes so that uninformed adults do not take the pills away from the child such that he or she cannot eat.
- Ensure unrestricted access to food and drink, including salty snacks (see section 1, Dietary/Medical Needs).
- Provide unrestricted access to a bathroom, perhaps a private bathroom in the nurse’s office.
- Adjust or waive attendance guidelines to provide for the child’s individual accommodation needs (e.g., illness, multiple medical appointments).
- Allow for a later start or early ending for a child’s school day
- This can help with time-consuming therapies and accommodate fatigue
- Make arrangements for the child to remain indoors if the temperature outside is too hot or cold.
- Monitor daily progress and activities to help ensure that he or she does not fall behind academically.
- Have a plan to get homework or tutoring to the child when he or she is ill or in the hospital.
- Children with CF may be absent periodically to receive IV antibiotics for lung infections, among other reasons.
- Allow the child to have a second set of text books at home.
- Consider Web cameras or DVD recordings of classes the child may miss.
- Have a communication plan within the school and between the school and the child’s parents.
- Provide counseling to the child
- This can begin in early elementary school
- It can help him or her cope with the challenges of a chronic health condition.
- Prepare a medical emergency plan for the school day, to include:
- Extracurricular activities
- School transportation
- Fire or other drills
- Actual emergencies as needed (see section 6. Emergency Planning).