Understanding primary immunodeficiency (PI)
Understanding PI
The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
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Living with PI
Living with PI
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
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Get involved
Get involved
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
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Advancing research and clinical care
Advancing research and clinical care
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
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Primary immunodeficiency and school

As your child's first teacher, you know your child better than anyone. To ensure your child has the best educational experience possible, it's important to learn how the system works.

For parents

If your child has a primary immunodeficiency (PI), it can affect their education by causing them to miss more school days. This can result in falling behind on schoolwork, missing out on time with friends, and being questioned by teachers and peers.

That’s why it's important to notify the school if your child is absent more frequently than other students, requires medication during school hours, or needs special accommodations, such as extra restroom breaks or rest periods during physical activities.

To ensure your child receives the same education opportunities as their peers, you should meet with school staff to explain your child's PI and develop a written plan that outlines the necessary accommodations.

If your child's school day is not impacted by PI, it's up to you to decide whether to inform the school about the condition.

Federal law and your child’s school

Federal laws, including the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973, provide guidelines for schools to follow when a health condition impacts a student's learning.

Parents should identify their child as having a disability in order to receive accommodations.
IDEA ensures that children with disabilities receive a free appropriate public education that meets their unique needs and prepares them for further education, employment, and independent living.
Services are available to all children between the ages of 3 and 22 who have a disability that adversely affects their educational performance. This regulation is spelled out in Part B of IDEA.
Schools must identify all students with disabilities and provide them with a free appropriate public education, which includes special education and related services that meet state standards and comply with the student's Individualized Educational Program (IEP).
Section 504 protects the rights of individuals with disabilities in programs and activities that receive federal financial assistance.
A student with a disability may be entitled to accommodations or other educational services under Section 504, even if they do not qualify for special education services under IDEA.
Schools must use an individual inquiry to determine if a student has a disability and provide them with an equal opportunity to participate in academic, nonacademic, and extracurricular activities.
Schools must also provide a free appropriate public education that accommodates the unique needs of individuals with disabilities, including regular or special education and related aids and services.

A brief overview of educational plans

Children diagnosed with PI may require a written plan that outlines their healthcare and educational needs while at school. Here are some of the most common options:

Individualized Healthcare Plan (IHP)

Developed by the professional school nurse in collaboration with the family, student (if appropriate), teachers, other relevant school personnel, and the student's healthcare provider.
Outlines the management of school healthcare services for students with significant or chronic healthcare conditions.
Ensures quality, comprehensive care of the child's healthcare needs, promotes continuity of care, and communication of the child's needs to relevant school personnel and parents.
Based on a student's need for nursing care while at school or participating in a school activity, and is not based upon educational entitlement such as Section 504 of the Rehabilitation Act of 1973 or special education.
May be included in an Individualized Education Program (IEP) or 504 Plan.

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.
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.
Not a replacement for an IHP. The IHP focuses on healthcare needs, while the ECP focuses on emergency care.
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, making 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.
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.
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.
Types of accommodations offered by a 504 Plan are often informal agreements between parents and school personnel developed some time during the child's educational experience.
When a child graduates from high school and either continues education or enters the workforce, 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 IEP developed to meet the educational needs of the individual student.
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.
The IEP team considers the child's involvement and participation in three main areas of school life: general education curriculum, extracurricular activities, and nonacademic activities.
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.
An IEP can follow a student throughout their school career.

More support for parents and caregivers

Caring for someone with PI, including children, takes a lot of patience, understanding, and support.

View caregiver resources Learning about caring for a child with PI

For children, teens, and young adults in school

As you grow older and move on to middle and high school, you'll have more responsibilities. Your teachers and parents will expect more from you. It's important to do your best, but living with PI can make that challenging. Being absent from school due to PI can lead to falling behind on work, missing time with friends, and not being able to participate in extracurricular activities.

If your PI affects your school day, you should tell your school. Especially if you need to be absent more than other students, take medication at school, or require adjustments like frequent restroom visits or rest breaks during physical activity. Your parents can arrange a meeting with your school to discuss your needs.

To keep up with school work, plan ahead and manage your time wisely. Getting organized and creating a good study environment can also help. Avoid procrastination and try to concentrate on one task at a time. If you're struggling, don't hesitate to ask for help from parents, teachers, friends or other school staff.

If you're being bullied, tell a trusted adult right away. If they don't listen, keep telling trusted adults until you're heard. Remember, your health and well-being come first. Don't be afraid to advocate for yourself and ask for help when you need it.

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Primary immunodeficiency and school

For parents