Project PENCIL Helps Children With Chronic Illnesses in School


More than 4 million elementary school-aged children in the U.S. have a chronic illness, and 25 percent of them miss more than one week of school each year because of their condition. These intermittent school absences make it difficult for children to fully participate in their classes; process information and learn; and make friends and navigate social situations. The burden of making it easier for children to cope with all these impacts of chronic illnesses falls heavily on parents.

Parents often have many questions when their child is first diagnosed, especially:

• How will this diagnosis affect my child in school?

• How will my child’s school support him/her?

• How do I get my child educational accommodations if he/she needs them?

• How will I manage his/her frequent absences from school?

Because the missed days from school can create obstacles to learning and get in the way of establishing friendships, a child with a chronic illness may suffer behavioral, emotional and social adjustment problems in school. But educational accommodations, such as unlimited bathroom breaks or extra time on tests, can help a child better manage the effects of his or her chronic illness at school.

While a child’s right to an equal education is protected by two federal laws — the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 — many schools may not understand a chronically ill child’s needs and lack the experience, resources and information necessary to provide such a child with appropriate educational accommodations. That’s why securing those special arrangements for a child with a chronic illness requires a team approach involving the child’s teachers, medical team, and other school personnel. Laura, whose daughter has cystic fibrosis, attests to how valuable these extraordinary measures are.

“All these accommodations have made it so much easier for my daughter to transition back into her educational environment and her social situation at school.”

If your child has a chronic illness, the best place to begin getting the help he/she needs is to notify the school of your child’s diagnosis and planned, or likely, absences. Then, develop a checklist of actions that you, your child’s teacher and your child will take during such absences.

For more information, please visit www.projectpencil.com.

Project PENCIL provides parents and teachers with practical skills to understand and cope with chronic illnesses, and to advocate for the school services that children with chronic illnesses need to decrease their stress and succeed academically and socially at school.

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