CF Navigator Resources
Your Guide to IEPs and 504 Plans
Making the most of school accommodations
What is an IEP?
An Individualized Education Plan (IEP) is meant to specifically outline a student’s special education accommodations, modifications, and goals. The IEP can include special services (for example, speech, physical, or occupational therapy, or personal aide assistance), which are provided at no cost to the family. Read the federal government’s legal definition of an IEP.
IEP development must follow a strict legal process, and involves parents or caregivers, at least one general education teacher, at least one special education teacher, a school psychologist, and a representative of the school district. Testing and assessment may also be required. Parents or caregivers may also wish to involve outside legal support to review IEPs or participate in IEP meetings.
What is a 504 Plan?
A 504 plan outlines how a school will remove barriers and provide support for a student with a disability. These accommodations most often come in the form of services (for example, medication support from the school nurse) and changes to the learning environment (for example, unrestricted bathroom time or catch-up plans for missed work due to illness). Read about how Section 504 protects students with disabilities.
A 504 plan is a bit more flexible than an IEP. Generally, they are developed by a team of people who know the student. The 504 plan team might include parents or caregivers, general and special education teachers, and the school principal.
Although state regulations vary, both IEPs and 504 plans are generally reviewed every year, often in the spring. Be sure to ask about the timing of IEP creation and review in your school district. You may also want to consider reviewing your child’s plan before the start of a new school year, or if their needs change.
Accommodation for CF that might be included in an IEP or 504 plan
You may want to consider accommodations in the following areas:
People with cystic fibrosis (CF) may have more frequent or longer trips to the bathroom. Consider bathroom accommodations such as unrestricted access to student bathrooms or use of a private bathroom (for example, in the nurse’s office). You may also need to consider school and classroom rules, and accommodations to those rules. For example, for schools with a strict hall pass system, perhaps your child could be given a permanent pass.
Making up for missed work
Planning ahead for extended absences (such as hospital stays, or during outbreaks of respiratory illnesses) may help to relieve some pressure when your child does need to miss school. Consider accommodations such as prioritized catch-up assignments, excused work, extra time for tests, and, if applicable, a plan for distance learning.
Meals and snacks
People with CF have specific dietary needs that may be different from other students. Consider accommodations such as access to extra snacks, ensuring appropriate rehydration after gym class or recess, and access to a refrigerator if needed.
Schools have strict rules in place regarding medication storage and onsite administration but people with CF need to take treatments at specific times of day. Consider outlining your child’s treatment plan in their IEP or 504 plan, including who will be responsible for administering each type and dose of medication. You may also want to consider who will conduct training on medication administration: can a caregiver train the school staff, or will they require training from a CF professional?
Top tips for creating and reviewing an IEP or 504 plan
- Work collaboratively with your child’s team. You are the expert in your child, but principals, teachers, and school district representatives are experts in the IEP/504 plan system. School staff may also have experience with IEP/504 plans for students with other chronic illnesses or disabilities that could be helpful for your child’s plan.
- Consider walking through a day in the life of your child to ensure all possible accommodations are considered.
- Don’t assume the school representatives know about CF and its manifestations. Consider providing a quick overview of CF at a planning meeting, or direct them to the Cystic Fibrosis Foundation’s Teacher’s Guide to CF.
- Be sure to ask if there are any other students with CF at the school. Extra planning will be needed to keep all people with CF safe.
- Encourage older students to provide insight into their school life and suggest accommodations that work for them. The care team at your CF center may also have good suggestions.
- Don’t be afraid to advocate for what you think is best. You know your child best, and what they are capable of.
- Plan ahead. Request a meeting with new teachers before the school year begins or within the first few weeks to review accommodations, particularly when your child is starting at a new school. For students starting college, accommodations can be discussed as early as orientation.