Did you know that children with primary immunodeficiencies qualify for special services at school to help them achieve their best? A recent IDF Education Forum entitled “Understanding Your Child’s Educational Rights” detailed how parents can be the strongest advocates possible for their child as they navigate the school setting and strive to succeed academically.
During the forum, presented virtually on August 8, 2020, guest speakers and parents of a child with a PI Christopher Riley, an assistant principal, and his wife Valerie Riley, a teacher of children with medical needs, discussed steps parents can take in order for their children to be provided with either a 504 Plan or an Individualized Education Plan (IEP). Both types of education plans are created by parents and teachers together, and, by law, must be provided to any student with a disability.
“If you have a student with PI, you have a student who qualifies as a student going to school with disabilities,” said Christopher.
Though the purpose of the plans is to assist students in the classroom, each achieves this goal in a different way.
The 504 Plan provides assistance for students who are performing fine academically but require certain accommodations in their education. For example, a child with PI who misses a lot of school days due to sickness might benefit from having extended deadlines, missed assignments and notes ready for them upon return to school, and two copies of text books – one to keep at home and one to leave at school.
“When it comes to a 504, we have to be sure that we are providing a free public education and that we are doing what we are supposed to do for a student who qualifies with a disability to actually level the playing field and make sure they can have the same educational experience,” said Christopher.
The IEP is for students who face learning challenges and their academics are being impacted as a result of the disability. An IEP must contain measurable annual goals and describe how educators plan to utilize specialized instruction and special services (like speech therapy) to help the student meet those goals.
So, where do parents begin in their efforts to seek services? The Rileys recommend that parents have the following ready before meeting with school officials:
- An understanding of the child’s diagnosis and the medications they receive
- A letter from the doctor describing recommendations on types of services he or she thinks the child needs
- A list of modifications the parent thinks are needed
- An understanding of their rights under the disabilities laws which include: Section 504 of the Rehabilitation Act of 1973; Free Appropriate Education; Americans with Disabilities Act; Individuals with Disabilities Education Act; and the Family Education Rights and Privacy Act
“Education is huge because when you go into a school to communicate with them, the more information you know, then you can go in to really be your child’s advocate,” said Christopher.
“Know your rights. That’s huge because sometimes you’ll go into a school and they will tell you ‘Oh, we just can’t do that,’ and it’s like, ‘No, you can,’ but a lot of parents will take that because they don’t feel confident. They think, ‘Well, they are the specialists, they are telling me it can’t be done,’ but, you know, it can be done.”
The Rileys also recommend accessing IDF education resources and sharing them with educators, including with every teacher every year a child moves up a grade. The resources include: “School Guide for Students with Primary Immunodeficiency Diseases,” “Patient and Family Handbook,” “Our Immune System,” and “Immune Deficiency Transition Guide: Pediatric to Adult Care.”
In addition to preparation, parents must also be dedicated to documentation, and keep a record of all meetings, phone calls, and e-mails exchanged with school officials. Be persistent, said the Riley, when trying to contact educators. If parents don’t hear back, send additional communication until they get a response.
“We want to answer those concerns. We want to have those conversations, but sometimes we are just busy with those things that happen in the course of running a school,” said Christopher.