Chronic Conditions, School and Self-Advocacy

Back-to-school time is here again! This can be both exciting and nerve-wracking for students experiencing new places and unfamiliar faces, new social norms, and new expectations.

Kids with chronic health conditions have additional back-to-school concerns, as their condition can impact emotional health, social and family relationships, and academic achievement. Students can positively impact the psychosocial and academic effects of their chronic condition by appropriately and effectively advocating for their own needs. There are opportunities to develop strong self-advocacy skills in the school environment, and learning these is crucial to the transition to independence in adulthood.

Self-advocacy requires an understanding of one’s situation with the ability to confidently ask questions, identify and speak up for one’s own needs. Studies across different chronic illness groups agree that students who are more educated regarding their condition and practice self-advocacy, use more problem-focused coping skills, have better social integration and are more knowledgeable regarding their options. In the school environment, this means a student with a chronic condition understands what supports they need to be physically present, academically successful, avoid isolation from peers, and can speak up to be sure their physical needs are met.

Counselors and teachers play a huge role in helping parents, caregivers and students
understand the importance of developing self-advocacy skills. It is a process that takes time, coaching and practice. It will not just appear when the student approaches adulthood. School staff and parents need to understand the importance of being both role model and coach, so that the student may successfully develop self-advocacy skills over time, and across different scenarios—including in school. School staff can be integral in guiding and educating families about this school process.

Tips for understanding and promoting needs in the school setting:
-Collaborate with 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.
Students should be part of this process when developmentally appropriate. The goal is
to give the student the opportunity to participate in school as typically as possible.

-Identify accommodations: 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.
Appropriate accommodations impact academic performance as well as social health.
Be sure to include the student in these discussions and listen to their input.

-Teach advocacy skills: 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 and advocate for themselves.
Talk to the student about issues of disclosure to peers.

-Practice: Parents should model these important skills for their student in real situations
when possible. Families can role play situations where the student might need to be a
self-advocate and set up practice sessions where parents function as a coach so their
student can gain confidence. Practicing with other trusted adults can be beneficial.
Parents and caregivers should understand how to model these skills and stress how to
advocate properly and respectfully.

-The earlier, the better: It is never too early to encourage young students to talk to their
teachers about their condition and needs. Assure students that their teacher is there to
support them and want to hear from them. Allowing the student to describe their daily
challenges and concerns will give them a first-hand perspective. It also gives the
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.

Self-advocacy skills don’t just appear. These skills need to be taught, developed, and coached to be effective. This is especially true for kids, 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 these students on the right path to adulthood.

Brenda McLean is a school counselor with the Indiana Hemophilia and Thrombosis Center (IHTC) in Indianapolis, with an extensive background in special education. Brenda helps school-aged patients and their families navigate education settings with their health concerns in mind. She also works directly with school staff and administration to help advocate for children’s unique needs in the school setting.

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