Managing Your Child’s Chronic Disease: Make Your School Your Ally

Getting out the door and to school every morning can be a feat in itself. For kids with chronic illnesses, that’s just the beginning. Being able to go to school with their peers requires careful planning and attention to detail to keep them safe and healthy.

Fran Goldsleger, MSW, a social worker in the Division of Pulmonary Medicine at Children’s Hospital of Philadelphia (CHOP), shared some advice for parents to ensure that a child’s health needs are met at school.

“When a child has a chronic health condition,” Goldsleger explains, “they may need medication during the school day. They may have special food or exercise needs. They may need to be protected from exposure to allergens. And they are often at higher risk for infection. Parents need to discuss all of this with the staff and make sure the school is able to meet their child’s health needs.”

Your child’s medical team can help you by writing a letter explaining the disease and any special accommodations your child may require. If the school receives federal funding, as most public schools do, you may have the right to request a 504 plan or an individualized education plan (IEP) from the school. (The IEP is used when a child needs specialized instruction or special services.)

Whether or not you request a written plan from the school, the kind of information included in the plans is important to discuss with any school or day care before you send your child there.

Here are some key issues to discuss when you meet with staff at your child’s school:

What medications will your child require?

• Be sure a plan is in place for giving your child any medications they may need during the school day — both scheduled doses and medications that are given only when needed, such as during an asthma attack or an allergic reaction.
• Discuss who will give the medication and where it will be stored. Find out if a nurse is on staff. Be sure to talk to the person who will be giving your child medication.

Does the school have sound infection- and allergy-control practices?

Many children with chronic diseases are at higher risk from normal childhood infections. A common cold that makes an otherwise healthy child stuffy and tired can send a child with a heart or lung condition to the hospital. Things to look for:

• Look at the facility during a normal school day to make sure it is not overcrowded.
• Ask how the school handles children who are found to be sick during the day. Is there a way for your child to be kept at a distance from a child who is showing signs of sickness?
• Ask about infection- and allergy-control practices, like hand-washing.
• Make sure practices are followed to separate children who have the types of chronic illness that can make them a risk to each other. Children with cystic fibrosis, for example, should not be in class together.

How will your child’s food needs be met?

Some children with chronic diseases require a special diet. That might be a high-fat, high-calorie diet. Or it might be a strict requirement to avoid certain foods —exposure to gluten, for example, for a child with celiac disease. What you can do:

• Explain your child’s food requirements and explore with the staff how those needs might be met.
• Ask if a refrigerator is available where your child can store perishable food brought from home, or a freezer and a microwave.
• If your child needs frequent hydration, will they be allowed to keep a water bottle at their desk?
• If they require snacks during the morning or after lunch, will they be able to keep those at their desk?

How will your child get the exercise they need?

All children need some type of exercise, but children with chronic disease may not be able to join in all of the activities of their classmates.

• Explain your child’s exercise needs and limitations, and any physical therapy exercises they may need to do during the day, and discuss how those needs can be met.

What other special needs does your child have?

Your child’s medical team can help you make a list of any other special needs your child may have, so that you can discuss them with the school when you meet. For example, your child might need permission to get up and go to the bathroom without waiting to get the teacher’s attention.

“Your goal as a parent is to build a partnership with your child’s school,” says Goldsleger. “Be clear and helpful in sharing information about the condition. You may need to be firm and persistent in pushing to see that those needs are met. But you should make an effort to show your appreciation, too, when things are going well. You need the school to be aware of your child’s needs and motivated to help them stay healthy.”