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IEP for education (sickle cell)


Your child might qualify for an education plan called an Individualized Education Program (IEP). You can get an IEP if sickle cell disease has affected your child’s learning skills, such as thinking, reasoning, and remembering.

What is an individualized education program (IEP)?

An IEP is a special education plan for your child or teen. It is part of a federal law, the Individuals with Disabilities Education Act 2004 (IDEA). By law, you and a team of staff members from your child’s school can create an IEP to help your child learn better. The IEP is a plan for teaching your child and meeting your child’s specific education needs.

Possible IEP modifications (changes) and related services

An IEP allows your child to have “modifications,” or changes, to regular school. Possible modifications (changes) are:

  • Being in a smaller class,
  • Having an extra teacher in the classroom,
  • Having changes in the classroom–Such as sitting in a different area, using different class materials, or using technology to help with learning,
  • Getting teaching and assignments designed for your child’s specific needs, and
  • Other services, such as speech and language therapy or occupational therapy.

What are the benefits of an IEP?

  • It highlights your child’s medical and learning needs.
  • It creates a team with you, your child’s health care team, and the school staff.
  • It tells you about specific rights you and your child have.
  • It raises the chances of your child doing well in school.

How do I schedule an IEP meeting?

  • Call your child’s school and speak with the school guidance counselor.
  • Tell the counselor that you would like to schedule a meeting to discuss your child’s medical condition and create or update an IEP. Tell the counselor that you would like the school nurse and all your child’s teachers to attend. This includes teachers for PE, music, art, and other activities.
  • As soon as the meeting is scheduled, call a STARR coordinator at 901-595-5775 or 901-595-5695 and give that person the date and time. STARR is the St. Jude sickle cell disease program called Success through Academics, Resources, and Research. The STARR coordinators are here to help you and your child. For example, a STARR coordinator might be able to go to the meeting to help you speak about your child’s needs. It depends on your need, the coordinator’s schedule, and where the meeting is. A STARR coordinator can also send the school any needed documents and copies of a booklet called “An Educator’sGuide to Sickle Cell Disease.”
  • Before the meeting, make a list of concerns you want to discuss.

How can I speak up for my child at an IEP meeting?

A STARR coordinator can always talk to you before a meeting to answer questions and give guidance. Call 901-595-5775 or 901-595-5695 to talk to a coordinator. You can also talk to a coordinator during your child’s regular clinic visit.

STARR coordinators regularly give parent workshops on how to advocate for (speak up for) your child during school meetings. If you would like to go to a workshop, ask your child’s STARR coordinator.


If you have questions about IEPs, ask your child’s STARR coordinator. You can also ask another member of your child’s health care team, such as a doctor, social worker, psychologist, or Child Life specialist. You may also call the St. Jude Psychology Clinic at 901-595-3581.


This document is not intended to take the place of the care and attention of your personal physician or other professional medical services. Our aim is to promote active participation in your care and treatment by providing information and education. Questions about individual health concerns or specific treatment options should be discussed with your physician.

St. Jude complies with health care-related federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability, or sex.

ATTENTION: If you speak another language, assistance services, free of charge, are available to you. Call 1-866-278-5833 (TTY: 1-901-595-1040).

ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al 1-866-278-5833 (TTY: 1-901-595-1040).

تنبيه: إذا كنت تتحدث باللغة العربية فيمكنك الاستعانة بخدمات المساعدة اللغوية المتوفرة لك مجانا. .يرجى الاتصال بالرقم. 5833-278-866-1  (الهاتف النصي: 1040-595-901-1).