What’s an IEP, and How Can It Help Children with Pompe Disease?

Mary Chapman avatar

by Mary Chapman |

Share this article:

Share article via email
adaptive equipment and Pompe

Children with Pompe disease, like other children with special needs, may benefit from an individualized education plan (IEP; also called an individualized education program).

What is an IEP?

An IEP, authorized under the federal “Individuals with Disabilities Education Act,” is a plan or program intended to ensure that a child with a disability attending a public elementary or secondary school (including charter schools) receives specialized instruction and related assistance. Such assistance can include a personal aide, special equipment, assistive listening and communicative devices, or adaptive physical education activities.

Private schools do not use IEPs, but have offer their own service plans.

Who puts an IEP together?

Individuals from various educational disciplines, working together with your child, you, and other family members, develop the IEP. Your child’s multidisciplinary team of Pompe specialists — which can include cardiologists, neurologists, pulmonologists, respiratory therapists, metabolic specialists, dietitians, orthopedists, and occupational/speech therapists — also usually play a role.

What are the components of an IEP?

The IEP covers areas that include the following:

  • The involvement and progress of your child in general school curriculum
  • All services for which your child qualifies
  • Appropriate educational accommodations necessary for your child to be successful at school
  • Your child’s current levels of academic performance
  • Measurable annual goals and objectives for your child’s education

Other steps you can take

Going to school and interacting with peers is a key part of childhood. As a parent, you are your child’s greatest advocate, and you play a crucial role in shaping his or her experiences. Adopt an open mindset and be willing to actively listen. Empower your child to have a voice by encouraging an open dialogue about his or her experiences, which can help you understand what they are going through. That understanding can also help in developing an IEP.

Have an open discussion with your child’s school counselors, staff, and teachers to help them understand Pompe disease and its challenges. Counselors and teachers should be able to provide support. Stay in touch with them to ensure the IEP is working for your child as intended.

Ask your child’s primary physician about the care he or she may need during the school day. Can your child easily walk between classes? Does your child need help at lunch? How much work can your child do when he or she is experiencing fatigue? It’s important to anticipate as many circumstances as possible when establishing an IEP.

About the 504 plan

Your child may be entitled to a 504 plan, so-named because it was created as section 504 of the U.S. Rehabilitation Act of 1973. A 504 plan specifies physical accommodations to help eligible children navigate school grounds and access classrooms and bathrooms. Among other things, a 504 plan can also help qualify your child for special transportation.


Last updated: April 28, 2020


Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.