What Parents Need to Know
As a parent of a child with a chronic illness, you’re not alone. Almost one in five children in the United States has a chronic illness serious enough to interfere with school.
Missing school or feeling left out is hard on kids, both academically and socially. As a parent, you play a critical role. You are your child’s advocate at school, ensuring that he or she gets the support they need to thrive.
So where to begin?
The infographic below outlines eight steps for helping your child succeed in school, starting with learning about your child’s rights. Schools are required by law to provide equal access to education for all children, including those with disabilities or a chronic illness. Your child might be eligible for educational accommodations to help manage the effects of his or her chronic disease while at school. Educational accommodations can take many forms, such as unlimited bathroom breaks or extra time on tests.
However, schools may not understand your child’s needs and may lack experience, resources, and information about providing educational accommodations to children with chronic illnesses.
That is why securing educational accommodations for your child requires a team approach with your child’s teachers, medical team, and other school personnel. Yvette, Laura, and Stacey—parents themselves—share their experience as part of a team in this video.
The downloadable Project PENCIL Parents’ Guide offers more detailed information about your child’s legal rights, and further details about what you can find on this site.
Hear three children with chronic illnesses talk about how they feel at school.
Meet three parents, Stacey, Laura, and Yvette, whose children have a chronic illness. The parents describe their children’s symptoms and the challenges of balancing a chronic illness with school.
Listen to Laura explain how she established a 504 plan for her daughter, Emily, with the help of doctors, teachers, and her homebound advocate.
How can school personnel help parents and children with chronic illness who are frequently absent from school
Teachers and school nurses can be enormously supportive in helping your child manage his or her chronic illness. Parents discuss some of the rewarding experiences they’ve had with their child’s school.