Emergency Preparedness for
Children with Special Health Care Needs

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 (Adobe Acrobat PDF File - 84K) which can be used as a tool to transfer critical information about these children. It is hoped that the form will gain acceptance and be utilized by primary caregivers and specialists so that emergency physicians may have access to vital information when emergencies occur. The form and policy guidelines on developing emergency care plans will be simultaneously published in the October 1999 issues of Pediatrics and Annals of Emergency Medicine, and will be accessible on the AAP and ACEP Web sites. A blank and sample copy of the Emergency Information Form can be downloaded and may be duplicated as needed. The blank form will also be sold in pads of 100 at a nominal cost through AAP Publications (Please call 888/227-1770).

We urge you to review the AAP and ACEP guidelines along with the Emergency Information Form and work to make the form available to emergency care providers as necessary. MedicAlert® Foundation, a nonprofit 501c(3) organization has also agreed to serve as a repository for the data (for any child who registers with the MedicAlert® program) collected via the Emergency Information Form.

Robert A. Wiebe, MD, Chairperson
AAP Committee on Pediatric Emergency Medicine