When children are first diagnosed with Chronic Granulomatous Disease (CGD), a type of primary immunodeficiency disease, a common question parents ask is, “Can my child attend school and participate in the regular classroom?” The answer is yes. In fact, many parents of children with CGD report that their experience is “nothing out of the ordinary.” They enjoy learning, participating in sports, playing instruments, going on field trips, and all kinds of other social activities.
The difference is that students with CGD may have to miss school for longer periods of time when they are sick. They should also avoid exposure to school-related activities that can put them at risk, such as field trips to a farm or planting seeds in soil or a hay ride.
To assure that a child’s needs are met, communication between school personnel, parents and students diagnosed with CGD is of the utmost importance. It is essential for family members or school staff to initiate a meeting before the school year begins and maintain regular communication throughout the year.
Meetings with school personnel and family members will facilitate an open dialogue regarding specifics about the individual student as well as foster an ongoing relationship to ensure that the student’s needs are met and deal with issues that may arise throughout the year. In some cases, it may be helpful for school personnel to contact the student’s healthcare provider for additional information, provided consent has been obtained from the student’s parent or guardian.
Understand Your Child’s Educational Rights
Parents of children with CGD can feel empowered, knowing that federal laws enable students with chronic health conditions, such as CGD, to attend school and participate in the regular classroom. These laws include:
- Section 504 of the Rehabilitation Act of 1973 (Section 504)
- Americans with Disabilities Act of 1990 (ADA) – Amended 2008
- Individuals with Disabilities Education Act (IDEA)
It is important for parents to take the time to understand the federal, state and local laws regarding their child’s education. These topics are covered in the Immune Deficiency Foundation School Guide. We strongly recommend that all parents thoroughly review the guide and share a copy with their child’s school prior to enrolling.
School personnel need to be aware of their responsibilities to assure that the needs of students with CGD are met.
A school healthcare team should be developed and include:
- School nurse
- Student (if appropriate)
- Principal, administrator, or designee
- Guidance counselor
- Student’s healthcare provider (if necessary)
With the above in mind, parents of children with CGD should feel confident, knowing that school personnel can be key partners in helping maintain the health and safety of their child.
For further questions about working with your child’s school, contact IDF via Ask IDF or 800-296-4433.
Source: Immune Deficiency Foundation School Guide for Students with Primary Immunodeficiency Diseases