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PCD Foundation | Primary Ciliary Dyskinesia

PCD at School

For children with Primary Ciliary Dyskinesia (PCD), it’s essential that school staff understand how the condition may impact learning, attendance, and participation.

Two federally supported educational plans can help ensure students with PCD receive the accommodations they need: the 504 Plan and the Individualized Education Program (IEP).

This information is provided for general educational purposes. Always consult with your child’s school and healthcare provider to determine the most appropriate support for your child’s specific needs. Additional services may also be available at the state or district level.

504 Plan

A 504 Plan provides accommodations to help students with health conditions—like PCD—participate fully in general education. It is designed for students who may not qualify for special education but still require modifications to succeed in a standard classroom setting.

Common Accommodations for Students with PCD:

  • Seating near the teacher due to fluctuating hearing loss (linked to chronic ear infections)
  • Assistive hearing devices such as FM systems
  • Inhaler access or other medication during the school day (with doctor’s note)
  • Tissues and hand sanitizer at the desk (parent-provided)
  • Unlimited restroom access due to productive cough
  • Temperature-based accommodations: stay indoors below 40°F; stay home below 15°F without penalty
  • Wear jackets during fire drills
  • Grading flexibility for absences related to illness
  • Extended time on tests and assignments
  • Home instruction during extended absences (check district policy)
  • Standardized testing accommodations such as small group settings, breaks, and extended time
  • Extra set of textbooks for home use during absences

How to Develop a 504 Plan:

  • Start with a school-based evaluation
  • Provide documentation from your child’s primary care provider (PCP) detailing the diagnosis and needs
  • Collaborate with your school nurse, 504 Coordinator, and teachers
  • Be specific about physical and instructional accommodations

For more about 504 Plans, visit:

Individualized Education Program (IEP)

An IEP is a legal document developed for public school students who qualify for special education under the Individuals with Disabilities Education Act (IDEA). The IEP outlines personalized goals, accommodations, services, and how progress will be measured.

IEP Eligibility:

  • Requires a multidisciplinary team evaluation
  • Must confirm that the child has a disability that impacts educational performance
  • Must show that special education services are needed for the child to benefit from instruction

Members of the IEP Team:

  • Parents/guardians
  • General education teacher(s)
  • Special education teacher
  • School system representative
  • Evaluation specialist
  • Anyone with expertise about your child (invited by you or the school)
  • Transition services staff (when applicable)
  • The student (when appropriate)

Because each state and district may format IEPs differently, consult your local school system for guidance.

For additional resources:

  • IEP Process Guide – Center for Parent Information & Resources
  • IEP vs. 504 – Understood.org

Scholarship Opportunities

Students with PCD may be eligible for educational support, including scholarships.