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Living with a primary immunodeficiency (PI) can affect your child’s education. They may be absent more which can lead to:

  • Falling behind on work.
  • Friends and teachers asking why they aren’t at school.
  • Missing time with their friends.

If their school day is not affected by PI, it is up to you whether you say anything to the school about their diagnosis. However, it is important to tell your school about your child’s disorder in the following situations so they can receive an education equal to other students.

  • They are absent or expect to be absent more than other students.
  • They take medication at school.
  • They need accommodations or adjustments made to their day, like more frequent restroom visits or rest breaks during physical activity.

If any of the above apply, you will want to meet school staff to explain your child’s PI and develop a written plan. Be sure to download the IDF School Guide as a comprehensive resource when dealing with your child’s school, but here is a breakdown of what you need to do.

Request a Meeting

Parents should always contact the school in writing. It is essential that you document all communication with school personnel in writing and request information in writing. Even after a call, follow up with an e-mail or written note that reviews the call. Ask to schedule a meeting to share essential information about your child’s PI and how it affects their education. This meeting should be scheduled before the start of the school year or soon after their child is diagnosed. Prior to the meeting, learn as much as possible about your child’s diagnosis and how it might/does affect their education. Gather the following materials to distribute at the meeting:

During the meeting:

  • Know what you want
  • Stick to the facts
  • Avoid emotions
  • Ask questions for clarification
  • Take notes
  • Complete necessary paperwork to authorize administration of medication at school, educational assessment, etc.
  • Review next steps and request a follow up date

After the Meeting

  • Follow up with the meeting attendees in writing to thank them for their help and review the next step.
  • Keep in touch with key staff regarding changes in your child’s medication and health and questions regarding school work.

Know Your Rights

Most parents of children with PI do not view their child as having a disability. You probably feel the same way. However, if you want the school to provide an accommodation, you should identify your child as having a disability. Federal laws, the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973, include requirements and guidelines for how schools should respond if a student’s learning is affected by a health condition. You, along with school personnel, should be aware of the laws that will make sure that your child will have equal opportunities at school.

Individuals with Disabilities Education Act (IDEA) is our nation’s special education law. Congress originally enacted it in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children. The law has been revised many times over the years. IDEA is divided into the following four parts.

  • Part A – General Provisions
  • Part B – Assistance for Education of All Children with Disabilities
  • Part C – Infants and Toddlers with Disabilities
  • Part D – National Activities to Improve Education of Children with Disabilities

It is important to understand Part B: Services for School-Aged Children. Part B ensures that all children (ages 3 to 22) with a disability will have available to them a free appropriate public education (FAPE) that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living. The Office of Special Education Programs (OSEP) in the office of Special Education and Rehabilitative Services (OSERS) in the U.S. Department of Education administer IDEA. There are 14 disability categories included in IDEA. To fully meet the definition as a child with a disability, a child's educational performance must be adversely affected due to the disability. A child with a chronic health condition may qualify for services under the category other health impairment if the condition adversely affects the child’s educational performance. IDEA requires school districts to identify all students with disabilities and to provide them with a free appropriate public education (FAPE). Under IDEA, FAPE means the student is eligible to receive special education and related services that meet state standards and are provided in compliance with the student’s Individualized Educational Program (IEP), which are explained in more detail below. The IDEA regulations specify how school personnel and parents work together to develop and implement an IEP.

Section 504 of the Rehabilitation Act of 1973 is a federal law designed to protect the rights of individuals with disabilities in programs and activities that receive federal financial assistance from the U.S. Department of Education. Title II of the Americans with Disabilities Act (ADA) protects the rights of individuals with disabilities in all public entities, regardless of whether it receives federal funds. In schools, these laws are enforced by the Office for Civil Rights (OCR) in the U.S. Department of Education. The ADA defines a disability as:

  • a physical or mental impairment that substantially limits one or more major life activities of an individual. Major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. A major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.
  • a record of such an impairment, or
  • being regarded as having such an impairment

This can mean that a child who has a disability that does not qualify for special education services under IDEA may still be entitled to accommodations or other educational services under Section 504. Section 504 describes a process for schools to use in determining whether a student has a disability and deciding upon the services needed by the student. The determination of whether a student has a disability must be made based on an individual inquiry since a student’s needs are unique. Section 504 also entitles students with disabilities to be given an equal opportunity to participate in academic, nonacademic and extracurricular activities. In addition, this law requires school districts to identify all students with disabilities and to provide them with a free appropriate public education (FAPE). To be appropriate, educational programs for students with disabilities must be designed to meet their individual needs to the same extent that the needs of nondisabled students are met. An appropriate education may include regular or special education and related aids and services to accommodate the unique needs of individuals with disabilities. Additional information about Section 504 of the Rehabilitation Act of 1973 is available at http://www.ed.gov/about/offices/list/ocr/504faq.html.

Educational Plans

If you need a written plan, there are some options. There is not one “best” plan for all students diagnosed with PI. The plan decided upon by you and your child’s school should be the one that will work the best for your child.

Individualized Healthcare Plan (IHP) - The Individualized Healthcare Plan (IHP) is a written healthcare plan adapted specifically for the school setting. An IHP outlines the management of school healthcare services for students with significant or chronic healthcare conditions. The IHP is developed by the professional school nurse in collaboration with the family, student (if appropriate), teacher(s), other relevant school personnel and the student’s healthcare provider. The plan ensures quality, comprehensive care of the child’s healthcare needs. It also promotes continuity of care and communication of the child’s needs to relevant school personnel and parents. The need for an IHP is based upon a student’s need for nursing care while he or she is at school or participating in a school activity. It is not based upon educational entitlement such as Section 504 of the Rehabilitation Act of 1973 or special education. Students with specialized healthcare needs may need an emergency care plan (ECP) in addition to an IHP. Sections of an IHP may be included in an Individualized Education Program (IEP) or 504 Plan. An IHP may also be included as an attachment to either of these documents.

Emergency Care Plan (ECP) - An Emergency Care Plan (ECP) ensures that a plan of action is in place if an emergency related to a student’s medical condition occurs in the school setting. The ECP includes whom to call and specific actions that should be followed to maintain the student’s health and safety during an emergency. The ECP is developed by a professional school nurse, the student (if appropriate), parents, relevant school personnel, the student’s health provider, hospital emergency department and community first responders. The school nurse shares the ECP with pertinent school personnel and provides training to these individuals. The ECP is not a replacement for an IHP. The IHP focuses on healthcare needs. The ECP focuses on emergency care. The ECP should flow from the IHP.

Section 504 Plan (504 Plan) - A student does not need to receive special education services to be eligible for services under Section 504. Administering medication, allowing the student to carry a water bottle, make frequent phone calls to parents, or developing a procedure that allows the student to keep up with assignments due to absenteeism are examples of related aids or services (accommodations) that may be provided to a student with a primary immunodeficiency disease. To keep everyone informed, a written document should be developed that lists a student’s accommodations and modifications. This document may be a Section 504 Plan or 504 Plan. A 504 Plan is developed by the educational team, which includes the parents and student (if appropriate) and relevant school personnel. The plan should include any accommodations that may not be readily available to students without disabilities. The types of accommodations offered by a 504 Plan are often informal agreements between parents and school personnel developed sometime during the child’s educational experience. Although outlining accommodations and modifications may not seem necessary, it is always best to put things in writing to ensure consistency among all interested parties. When a child graduates from high school and either continues education or enters the work force, a Section 504 Plan may be continued to guarantee accommodations necessary for success.

Individualized Education Program (IEP) - A child, ages 3 to 22, who receives special education must meet the educational qualifications of special education and have an Individualized Education Program (IEP) developed to meet the educational needs of the individual student. The IEP provides an opportunity for teachers, parents, school personnel and students (when appropriate) to work together to improve educational results for a child with a disability. To create an effective IEP, the educational team (parents, special and regular educator(s), a representative of the school system, someone to interpret evaluation results, others with knowledge about the student and the student) meet and discuss the student's unique needs. When constructing an appropriate educational program for a child with a disability, the IEP team considers the child's involvement and participation in three main areas of school life:

  • General education curriculum
  • Extracurricular activities
  • Nonacademic activities

The team designs an educational program that will help the student progress in the general curriculum. The IEP must include the supplementary aids and services (accommodations) that will be provided for the student and a statement, if necessary; of the program modifications (which change the rigor of the curriculum) needed to facilitate the child’s progress and capability to be involved in the general curriculum. Extracurricular and nonacademic activities refer to school activities that fall outside the realm of the general curriculum. Both Section 504 Plans and an IEP are legal documents between parents and the schools. However, special education has a due process clause should misunderstandings arise. An IEP can follow a student throughout high school, while the 504 Plan can continue past high school. If a child only needs related services and not special education services, the child would not be eligible for services under IDEA, the Individuals with Disabilities Education Act. This child might still be eligible for services under Section 504. Additional information about IEP is available through your local school district or at the following U.S. Department of Education Website: www.ed.gov/index.jhtml.