The Individuals with Disabilities Education Act (IDEA) is a federal law that requires a free and appropriate public education is available to children with disabilities. Section 504 is a federal law that prohibits discrimination against a person because of a disability by any group that gets federal funds. An individualized education program (IEP) or 504 plan outlines educational needs and accommodations, such as how the school will manage your child's absences or medical treatments like taking enzymes.
IEPs can be used for students whose health conditions, or other factors, have caused a need for specialized instruction; 504 plans are used for students who need accommodations to access their education the same as their peers. Through evaluation, school personnel can work with you to determine the type of plan that will benefit your child the most. Some children will be found eligible for a 504 plan as cystic fibrosis does not cognitively affect a student's ability to learn. However, schools may find a child eligible for an IEP since missing school because of an
Families, a school health coordinator, a care provider, and a social worker talk about partnering with school staff to accommodate the specific needs of students with CF, including 504 plans.
Requesting an IEP or 504 Plan
Some schools will recommend an evaluation for an IEP or 504 plan even before a parent suggests one. However, some will not, so it is a good idea to check with your child's school — and your state — about their policies. If a school does not recommend an IEP or 504 plan, you can request an evaluation. It can take some time to put an IEP or 504 plan in place because it is a federal and state process. For this reason, approach the school about an IEP plan as early as possible. For example, because of the terms of their contracts, school staff may not be able to meet during the summer or before the start of school.
To request an evaluation for a IEP or 504 plan, or a review of your child's plan or program, request a meeting from your child's school. Contact a teacher, administrator, counselor, or school nurse, and request that your child be evaluated under the IDEA or Section 504 of the Rehabilitation Act. Before the meeting, ask your CF care center to send a letter to the school that explains how CF affects your child and identifies accommodations that may help. Your CF care team also may have ideas about how the school can help meet your child's learning and health care needs.
Under the IDEA, students qualify for services if they are found eligible under one of the federally listed categories. Difficulty with attendance is one way an illness can impact your child's ability to access their education. Extended absences from school because of illness may qualify your child for services, like additional educational resources. But, you need to have an IEP or 504 plan in place before your child is absent because of illness. If you do not, it may take weeks to get help from the school.
Once a student qualifies for services, the school will hold a team meeting with the family to develop an IEP or 504 plan.
Not all parents want to have a written IEP or 504 plan. Instead, you may have a verbal agreement with the school so your child can take medication at school. But, without a written plan, the school is not legally responsible.
What to Expect From an IEP or 504 Plan
The IEP or 504 plan documents will be a detailed plan on how the school will meet your child's needs. Before writing the plan, you, the school's special education supervisor/coordinator, the teacher, and the people who know your child's needs should attend a team meeting. A member of your CF care team may also be able to join via conference call to provide additional medical expertise or insight on the educational implications of CF. Students ages 14 and older often are encouraged to attend. You can also ask a family member, friend, or colleague to accompany you to the meeting for support. Bring a copy of the letter from your CF doctor to the meeting, along with any other records that show why your child needs certain accommodations.
“So our next big challenge was helping everyone understand the intricacies of CF. For each meeting, we wanted to be sure that everyone would get the same important information. So aside from Silas' 504 plan, we prepared a binder with background materials on CF that could be kept in the classroom for any substitutes and aides to refer to. We made index cards with images of Silas' medications and instructions on how to administer them. We also brought in his medicine with the correct prescription labels, so everyone could see what he would be taking at school. In addition, at each meeting, we gave a short presentation that explained the details of cystic fibrosis. Visual examples helped us explain CF, how it affects Silas and the accommodations the school would need to make for Silas' safe transition to school.” — Erin Delaney, mother of a child with CF, from the CF Community Blog
If the IEP or 504 plan does not meet your child's needs, do not sign it. You have the right to stop and reschedule the meeting if you need to learn more before a plan is signed. Ask your CF care center for a copy of a sample plan to to help you develop a program or plan — but make sure you tailor the plan to meet your child's needs.
It is legally mandated that an IEP should be reviewed at least once a year to see if changes are needed. Yearly reviews are not a legal requirement of 504 plans but are recommended. You are also legally allowed to call a meeting throughout the school year, as needed, if concerns or new developments arise.
The school may not find your child eligible for services under the IDEA. It may state that the impact of CF on their education does not meet qualifications under one of the federal categorical designations. If that is the case, you can ask that your child be evaluated under Section 504 of the Rehabilitation Act of 1973. Section 504 requires the student to have a disability that substantially limits a major life activity, including learning. Many people with CF qualify for services because their ability to breathe or digest food is limited. So, Section 504 should give your child the accommodations needed to access school.
Sample IEP or 504 Plan Accommodations
- Leave class early or have additional time during the school day to take medication
- Adjust school rules to allow the child to take their own medication, like pancreatic
enzymes (each state determines if this is allowed) - Have a plan to get homework or a tutor when the child is ill, including in the hospital
- Give audio or video recordings of missed classes
- Adjust or waive attendance rules (each state determines if this is allowed)
- Give access to a private bathroom
- Don't limit access to bathroom or water from a faucet
- Have a school medical emergency plan
- School notifies parent of increase of illnesses such as RSV, Flu, whooping cough, or COVID-19
- Sanitize high-touch areas, such as door knobs and shared desks
- No tests upon return from absence
- Extended time on assignments and assessments (this can be helpful during standardized tests if the child needs restroom breaks or a snack)
Transitions
Schools also must provide assistance to students who have IEPs with the transition after high school. The transition section of the IEP helps students begin to think about career goals, independent living, and post-secondary education. Schools may not understand the child's health conditions and it may be important for you to advocate for your child.
In some states, the section of transition in an IEP goes into effect when the child is 14 years old. In other states, they go into effect when the child is 16 years old. You can help telling the school's IEP or 504 team know about restrictions on careers that affect breathing, and the need to balance career goals with attention to CF care. You may also want to consider ways in which the school's transition process and your CF team's health care transition process can work together to prepare your child for adulthood.
Watch families, a teacher, and other school health specialists talk about the transition from elementary to middle and high school, fitting in day-time treatments, and managing school work while in the hospital.
Getting Changes When Denied
If working with a school to accommodate your child becomes challenging, keep in mind that you may need to work with the school for many years to get the educational accommodations or interventions that is necessary for your child by law. IDEA provides help for parents who cannot get needed accommodations or services for their child. Your CF care team can help with the appeal process.
If the school will not make needed changes, you have some options:
- You can request contact information for an education advocate from Compass or your Department of Education.
- You may file a complaint with your state education agency. You may need to request mediation with the school and a mediator from your state education agency to solve the issue.
- If mediation does not work or is not offered in your state, ask the school to have your complaint heard by a hearing officer or administrative law judge or have the states Office for Civil Rights review your concerns
- If a hearing does not work, you can file a lawsuit in federal court alleging violations of the IDEA; however, this can be complicated and expensive.
Section 504 allows each school to create its own way to appeal a denial for accommodations or services. However some schools may use the same way outlined for the IDEA. At the least, parents should be told of a denial, have access to school records about the student and be allowed to work with the school to solve the issue. If you and the school cannot agree about the needed changes, you can file a complaint with the United States Department of Justice.
Private Schools
If your child attends a private school, talk to the school administrators, teachers, and other students to learn how flexible the school is in meeting the needs of people with CF or with other health conditions. Private schools that do not get federal funding do not have to follow the IDEA or Section 504 laws. But, the Americans with Disabilities Act (ADA) may help students with CF get changes or accommodations at a private school. This could be in the form of a health plan or an agreed upon verbal commitment, however, that is not legally binding.
The ADA protects a person who has a physical or mental impairment that substantially limits one or more major life activities, who has a record of impairment, or who is regarded as having an impairment. It applies to schools, day-care centers, public buildings, and other places that are open to the public.
Most students with CF meet the ADA's definition of a person with a disability because they are substantially limited in major life activities, such as breathing and digesting food. Your CF care team can help you document your child's needs in order to request school accommodations. You can request changes like those found in an IEP or 504 plan; however, the request will not necessarily be granted as private schools who do not get federal funding legally do not have to follow an IDEA or 504 plan.
A private school that does not get federal funding may decide not to accept a student because of the need for accommodations. If the private school does receive federal funding, they may not legally refuse to accept someone because of requested health accommodations. If this happens, contact COMPASS or your state's Department of Education.
You do not have to disclose health needs unless or until you need to request accommodations. However, those accommodations may only apply after they are in place. You can tell the school about your child's health concerns, or you can wait to tell them when you need accommodations. If you are uncertain or have questions, ask your CF care team for help.
Assistance with School Accommodations
If you have questions or would like more information about IEPs, 504 Plans, and school accommodations, contact CF Foundation Compass for a referral. Call 844-COMPASS (844-266-7277) Monday - Thursday, 9 a.m. - 7 p.m. ET and Fridays 9 a.m. - 3 p.m. ET, or email compass@cff.org.
