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Teaching self-advocacy to students with chronic conditions

By Brenda McLean, School Counselor

Indiana Hemophilia & Thrombosis Center

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.

The back-to-school season can be exciting and intimidating for students experiencing both new places and unfamiliar faces, new social norms, and new expectations. For students with a chronic illness or disorder, an extra layer of challenge exists. According to the Centers for Disease Control (CDC), approximately 40% of school age kids are diagnosed with one or more chronic conditions. A chronic condition can negatively impact emotional health, social and family relationships, and academic achievement. Studies show that having a chronic illness also negatively affects academic performance.

Navigating the education setting with health challenges gives rise for students to develop strong self-advocacy skills. Students can help minimize the psychosocial and academic effects of their chronic condition by appropriately and effectively advocating for their own needs. Learning these skills is crucial to the transition to independence in adulthood.

Self-advocacy, as used in this context, involves being confident in understanding one’s situation with the ability to confidently ask questions and speak up for one’s own needs. Studies across different chronic illness groups agree that those who are more educated in 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 accommodations are available to them to be physically present, academically successful, avoid isolation from peers, and can speak up to be sure their physical needs are met.

Counselors 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 and practice. It will not just appear when the student approaches adulthood. Counselors can promote the importance of being both role model and coach to parents and caregivers, so that the student may successfully develop self-advocacy skills over time, and across different scenarios—including in school. Families can use guidance knowing how to navigate this process as well.

Tips for understanding and promoting needs in the school setting

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 to their peers who do not have a chronic condition.

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 the student should have improved attendance, better performance, and feel less isolated from their peers. Be sure to include the 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 the student about issues of disclosure to peers.

Practice: Discuss the appropriate times and situations when the student might need to be a self-advocate. Encourage parents to model those important skills for their student in real situations when possible and set up practice sessions where they function as a coach, so their student can gain confidence. Practicing with other trusted adults can be beneficial. Be sure parents and caregivers understand how to model these skills and stress how to advocate properly and respectfully.

Start Early: 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 wants to hear from them. Allowing a teacher to hear from the student will give them a first-hand perspective of the daily challenges a student with a chronic condition might have. 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 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 these students on the right path to adulthood.

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