Emergency Preparedness for Children with Special Health Care Needs

Program Overview

Are the Emergency Care Needs of Children with Special Health Care Needs Being Met? In our rapidly changing high tech health care environment, children with very special health care needs are increasing. Kids with high tech gear such as ventriculoperitoneal shunts, gastrostomy tubes, indwelling central lines, tracheostomies, pacemakers and home ventilators are becoming common in the community. Children with very complex and difficult health care needs which not only include rare genetic and metabolic problems but also those with difficult to manage asthma, diabetes, sickle cell disease, malignancies and a variety of other problems are increasing. Because of the complex and varied needs of these children, they are often lost in the cracks between the specialists and the primary care medical home. When a crisis occurs and children with special health care needs must access the emergency system, they are often left vulnerable because of a lack of access to information about their medical problems. There can be delays in treatment, unnecessary tests, and sometimes serious errors as a result of lack of access to information available to the treating emergency physician.
To facilitate prompt and appropriate emergency care for children with special health care needs, the American Academy of Pediatrics (AAP) and the American College of Emergency Physicians (ACEP) have developed an Emergency Information Form (EIF) which can be used as a tool to transfer critical information about these children. Families can ensure that emergency responders and medical personnel have access to their child's critical health information during a disaster by completing the EIF and including a copy of it in the family's go-kit and disaster preparedness kit.

The EIF form was developed in tandem with revised joint AAP/ACEP policy guidelines on Access to Critical Health Information for Children During Emergencies: Emergency Information Forms and Beyond | Pediatrics | American Academy of Pediatrics (aap.org) published simultaneously in Pediatrics and Annals of Emergency Medicine in March 2023.

Other resources from the AAP on this topic may be viewed via the National Center for a System of Services for Children and Youth with Special Health Care Needs.