If your child has a serious health condition, the time is now to be transparent with teachers and other school staff, experts say. Get tips on how to start the conversation:
Dr. Ashley Moss, Pediatric Psychologist with Seattle Children’s Hospital
Moss, who specializes in helping patients cope with chronic illness, urges parents not to put off these important conversations.
“Some parents worry about sharing information with schools about their children’s health,” she said. “However, open communication is critical to ensure the school knows what to do and how to create a safe and supportive environment.”
Schools are legally bound to keep your child’s health information confidential. Involving your child’s medical team will give a measure of authority to your requests, Moss said.
“Your medical team is the best resource for learning what information is critical to share with your child’s school,” she said. They also can recommend accommodations, if needed. Here’s how to invite your child’s health care team into the conversation:
“The best way to make sure students get the care they need and are treated fairly at school is to put together a written care plan, which outlines specific care students may need at school. Written care plans or doctor’s orders are used as the basis for a Section 504 Plan or an Individualized Education Program.
Give consent to your medical team and your child’s school to communicate directly with each other so everyone who cares for your child has the necessary information about your child’s medical needs. The school staff should know how to reach your child’s medical team, especially in the event of an emergency.
Christine Kingsley, Advanced Practice Registered Nurse and Director of Health and Wellness at the Lung Institute
A parent needs to be transparent with school staff and then keep a watchful eye, Kingsley said.
“To ensure your children's health conditions will not hinder them from gaining the best possible experience at school,” she said, “you must be your child's advocate.” Here’s what she recommends:
Ask for one-on-one meetings to explain the full extent of your child's conditions and come equipped with hard copies of diagnoses, medical certificates, physician's requests, etc. to offer proof and motivate school authorities to act on necessary special requests.
You should also consult with your child's medical team first so the information you'll be providing during the meeting is curated for addressing the illness in a school setting. Finally, don't forget to involve the school nurse in the equation -- keep in touch so the nurse can be the point of contact for handling your child's medical care and medication intake while they're at school.
Cheryl French, who has hereditary angioedema (HAE), and is raising daughters who also have the rare disorder that causes dangerous swelling episodes.
When a child has a rare or serious disease, parents are “the first line of defense,” French said. She recommends doing a lot of prep and communication on the front end to ensure a successful year. Tap into resources offered by patient advocacy organizations, such as the U.S. Hereditary Angioedema Association and consider taking these three steps:
- Ask your child’s doctor for a diagnosis letter. This can be sent to the school so that your child’s condition is verified and on the record in writing. The doctor can detail your child’s needs, including medication requirements.
- Get medical alert bracelets so your child has this ID at all times. These bracelets can communicate a lot of info, including diagnosis, doctor’s name and health care plan.
- Include your child as an important member of the care team. He or she can take on an age-appropriate amount of responsibility and can learn to self-advocate. For instance, even a younger child can share the basics about their condition and should know the procedure for telling a teacher or nurse that they don’t feel well.