The back-to-school season can be exciting and intimidating for students experiencing both new places and unfamiliar faces, especially for students with a chronic illness or disorder.
Navigating the education setting with additional health challenges gives rise for these kids to develop self-advocacy skills. Knowing how to appropriately and effectively advocate and communicate one’s needs is an essential skill and crucial to the transition to adulthood.
Self-advocacy means confidently asking questions and speaking up for one’s own needs. In the school environment, this means a student with a chronic condition understands what accommodations are available to them to be successful in school given their condition, and they can speak up to be sure accommodation is met.
Parents and caregivers need to understand that learning self-advocacy skills is a process that takes time and practice. The role of the parent or caregiver is very important, as they must function as both role model and coach so that the student may successfully develop these skills over time and learn how to navigate many different scenarios.
Educate the school: Parents of a student with a chronic illness or disorder must have a realistic conversation with school regarding the student’s diagnosis and how attendance, learning challenges, participation and social situations could be affected. The goal is to give the student the opportunity to participate in school as similarly as possible as their peers who do not have a chronic condition.
Start Early: It is never too early to encourage young students to talk to their teachers about their condition and needs. Assure your child that their teacher is there to support them and wants to hear from them. Allowing a teacher to hear from your child will give them a first-hand perspective of the daily challenges a student with a chronic condition might have. It also gives your student an opportunity to share and embrace their uniqueness while learning basic communication skills that will benefit them as they learn to advocate for themselves.
Put supports in place: All parties will feel more at ease when a good plan is in place. An Individualized Health Plan (IHP), 504 Plan—or where appropriate, an Individualized Education Program (IEP) —can get everyone on the same page. Attendance is crucial to academic performance as well as social health. With a plan in place, accommodations can be determined so that students should have improved attendance, better performance, and feel less isolated from their peers. Be sure to include your student in these discussions and listen to their input.
Educate the student: The student needs to understand their own condition and needs. They need to also understand their support document (IHP, 504, IEP) and what the accommodations mean, as developmentally appropriate. A student will feel much more confident when they can talk about their condition, understand how the accommodations support them, and how the plan works. Talk to your student about issues of disclosure to peers.
Practice: Discuss the appropriate times and situations when the student might need to be a self-advocate. Be sure to model those important skills for your student in real situations when possible. Set up practice sessions where you act as a coach, so your student can gain confidence. Practicing with other trusted adults can be very beneficial. Be sure to model and stress how to advocate properly and respectfully. Self-advocacy skills don’t just appear, they need to be taught, developed, and coached to be effective. This is especially true for kids in the school setting, as they often fear being seen as “different” or “difficult” by their peers or teachers. It is important to set kids up for success by giving them the tools needed to find their voice. Self-advocacy skills are needed in many situations outside of school as well. Developing these skills will set your child on the right path to adulthood.
Steve Yockey is a School Liaison with the Indiana Hemophilia and Thrombosis Center (IHTC) in Indianapolis. Steve works closely with students living with blood disorders to ensure their chronic conditions affect their education experience as little as possible.
