School Accommodations for chILD: 504 Plans and IEPs
A Guide to 504 Plans and IEPs for Children with Interstitial and Diffuse Lung Disease
Children with chILD often need special accommodations at school to manage their lung disease while getting a good education. Whether your child needs oxygen during the school day, takes breathing treatments, or misses school for medical appointments, you have legal rights to ensure your child gets the support they need.
This guide explains two important tools that can help: 504 plans and IEPs (Individualized Education Programs).
Children’s interstitial and diffuse lung disease (chILD) is a rare lung condition that can affect a child’s ability to participate fully in school. It’s important to know that:
Common challenges children with chILD face at school include needing oxygen, getting tired easily, missing school for appointments or hospitalizations, and needing breathing treatments during the school day. The right school accommodations can make a huge difference.
Both 504 plans and IEPs are legal documents that protect your child’s right to a free and appropriate education in public schools. They outline the special accommodations and services your child needs because of their medical condition. However, they work differently and are based on different laws.
A 504 plan is based on Section 504 of the Rehabilitation Act of 1973, a federal law that prevents discrimination against people with disabilities. A 504 plan provides accommodations that help your child access education the same way as their peers.
Who qualifies: Your child must have a physical or mental condition that substantially limits one or more major life activities. For children with chILD, this usually means breathing is significantly limited. Most children with chILD qualify for a 504 plan.
What a 504 plan provides:
What a 504 plan does NOT provide:
An IEP is based on the Individuals with Disabilities Education Act (IDEA), a federal law that requires schools to provide special education services to eligible students. An IEP provides both accommodations and specialized instruction.
Who qualifies: Your child must have a disability that fits into one of the federal categories listed in IDEA AND need specialized instruction to make progress in school. For children with chILD, this might happen if frequent absences cause your child to fall behind academically or health-related limitations affect your child’s ability to learn at the same pace as peers.
What an IEP provides:
504 Plan:
IEP:
Getting a 504 plan or IEP in place takes time, so start the process as early as possible — ideally before school starts or early in the school year.
Step 1: Request an Evaluation
You have the right to request an evaluation for a 504 plan or IEP. Contact your child’s school in writing and specifically request that your child be evaluated under Section 504 of the Rehabilitation Act or under IDEA (for an IEP).
Sample request: “I am writing to request an evaluation for my child [name] under Section 504 of the Rehabilitation Act. [Child’s name] has been diagnosed with children’s interstitial and diffuse lung disease (chILD) and needs accommodations to access education safely and effectively. Please let me know the next steps in this process.”
Step 2: Get Medical Documentation
Before your meeting with the school, get a letter from your child’s pulmonologist or chILD specialist. This letter should explain:
Step 3: Attend the Team Meeting
The school will schedule a meeting to discuss your child’s needs. This meeting typically includes you, your child’s teacher(s), a school administrator, and the school nurse. Bring the medical letter from your doctor, explain your child’s needs in your own words, and ask questions if you don’t understand something. You can bring a support person.
Step 4: Review and Sign the Plan
The school will create a written 504 plan or IEP based on your meeting. Before you sign, read the entire plan carefully and make sure all necessary accommodations are included. You have the right to request changes or ask for more time to review before signing.
Step 5: Monitor and Update
Stay in contact with teachers to make sure accommodations are being followed. Request a meeting anytime your child’s needs change. Attend annual review meetings (required for IEPs, recommended for 504 plans).
Tip: It’s best to have a 504 plan or IEP in place BEFORE your child has problems at school or needs to be absent. Don’t wait for a crisis to request accommodations.
If your child is denied a 504 plan or IEP:
If the school doesn’t follow the plan:
If working with the school directly doesn’t resolve the issue:
If your child attends a private school that does not receive federal funding, the school is NOT legally required to follow IDEA or Section 504. However, the Americans with Disabilities Act (ADA) may still require them to provide reasonable accommodations. Note: private schools that do receive federal funding must follow Section 504.
If your child has an IEP, the law requires the school to help plan for life after high school starting at age 14–16 (varies by state). Work with your child’s care team and school to discuss career paths, college disability services, and transitioning from pediatric to adult medical care.
While federal laws apply nationwide, states have some flexibility in implementation. Specific procedures and timelines, rules about self-administering medications, and attendance policies differ by state. Contact your state’s Department of Education to learn about your state’s specific rules.
504 Plan — A legal plan under Section 504 of the Rehabilitation Act providing accommodations to help a student with a disability access education equally.
ADA (Americans with Disabilities Act) — A federal law prohibiting discrimination against people with disabilities. Applies to private schools that do not receive federal funding.
chILD (Childhood Interstitial and Diffuse Lung Disease) — A group of rare lung diseases affecting children. chILD can affect a child’s ability to breathe, exercise, and attend school regularly.
Homebound Instruction — Educational services provided at home by a teacher when a student cannot attend school due to a medical condition.
IDEA (Individuals with Disabilities Education Act) — A federal law requiring public schools to provide special education services to eligible students. The legal basis for IEPs.
IEP (Individualized Education Program) — A detailed legal plan for students needing specialized instruction and services. Includes both accommodations and specialized teaching.
Nebulizer — A medical device turning liquid medicine into a mist to be breathed into the lungs. Some children with chILD need nebulizer treatments during the school day.
Oxygen Concentrator — A machine pulling oxygen from room air and delivering it through tubing and a nasal cannula. Some children need supplemental oxygen at school.
Pulse Oximeter — A small device clipped to a finger measuring the oxygen level in the blood.
Respiratory Distress — Difficulty breathing requiring immediate attention. Signs include fast or labored breathing, blue color around lips, and skin pulling in at the neck and ribs.
Section 504 — The part of the Rehabilitation Act of 1973 requiring schools to provide reasonable accommodations for students with disabilities.
This information is for educational purposes only. It should not be used as a substitute for the medical advice of your child’s healthcare provider.
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The information provided here is for educational purposes only and should not be used as a substitute for professional medical advice, diagnosis, or treatment.
