Educate schools on primary immunodeficiency to better support your child

Building relationships with educators at the beginning of the school year is important for any family, but for those affected by primary immunodeficiency (PI), it’s critical. Most school staff have never heard of PI, and it’s up to parents, and students if they are old enough and feel comfortable, to inform teachers, administrators, and the school nurse that they require special accommodations to remain healthy.

“You have to really be the educator when it comes to what your child’s diagnosis is, what that means for them attending school, what their attendance could look like, things that they may need in order to make their school experience the best that it can be,” said Chris Riley in a recent Immune Deficiency Forum (IDF) “Back to School with Primary Immunodeficiency.”

Chris Riley, director of special education at The Palmdale Aerospace Academy in California, and his wife Valerie Riley, a special educator, co-presented the forum. The Rileys, long-time IDF volunteers, are parents to a young adult with PI, and Valerie Riley is diagnosed with PI.

“We’ve navigated the waters of what it means to go back to school with a child that has PI and a teacher that has PI and what that means before Covid, what it means during this time period, and how to make sure that the experience is the best possible one that your child can have,” said Chris Riley.

“That was our goal with our son was that he could have the best experience that was most like his peers that we could possibly provide for him as he went through school.”

When the academic year starts, meet with your doctor, the couple advised, to find out what they think is the best setting for your child based on their current health. Once you’ve obtained the doctor’s orders for special accommodations, inform the school that your child is at a high-risk status and explain the implications, such as lengthy absences.

Develop relationships with everyone at the school – from the front desk secretary to the principal – so that all team members understand the importance of taking precautions and know how to respond.

“The school site administrator (or principal) has to know what’s going on. They’re the person who is there every single day,” said Chris Riley.

Request a meeting with school staff to develop a 504 plan that outlines specific steps the school must take to create an environment where your child can achieve their potential. The plan might include accommodations like:

• A bathroom pass as often your child needs it.

• An extra set of books at home in case of missed school time.

• Clearance on extended absences.

• Missed notes provided by the teacher.

• Flexible seating to allow distance from sick classmates.

• Timely reports of disease outbreaks.

• Access to the school nurse.

For secondary and post-secondary levels, allow students to choose classes the time of day that works best for them and their energy level. That might be early morning or later in the day.

Follow up on meetings with an email outlining the 504 plan steps discussed and reach out to IDF for support if the school isn’t willing to make certain accommodations.

If you’re not comfortable sending your child back to school, seek online learning opportunities though they do vary with the school systems. Not only can students use technology to attend classes, but they can collaborate with each other through distance learning.

Encourage your child to join IDF’s Teen Escape program and explore other IDF teen resources to ease the social-emotional challenges that can be experienced with a PI diagnosis.

“That helped our son significantly when he was in high school just to understand that he was a part of the community and that he wasn’t really doing this thing all by himself. It gave him people he could have and talk to about what was going on,” said Valerie Riley.

When a child with PI progresses to college, other considerations come into play. Is your child well enough for dorm living with a roommate or do they have to live by themselves on campus or even off campus? Will your child give you permission to make decisions about their healthcare, a choice that is theirs once they turn 18? Is there a doctor near the college?

Follow these tips for your college-bound young adult:

• Visit the disability resource center when you take college tours

• Distribute the doctor’s letter with accommodations to professors (your child’s responsibility)

• Find a local primary care provider

• Sign forms to be involved in your child’s healthcare decisions, if appropriate

Empower your child to be their own advocate. Teach them about their PI, stress the importance of handwashing and other hygiene measures, include them in 504 planning, and support them if they choose to tell others about their condition.

“The sooner they get involved with their education and what they need to be successful, the better the experience will be for them,” said Chris Riley.

Use these resources to learn more:

IDF School Guide for Students with Primary Immunodeficiency

Your Rights Under Section 504 of the Rehabilitation Act

COVID-19 Resources for Schools, Students, and Families