An estimated 12 million US children have special health care needs. Children with special health care needs (CSHCN) are those who have, or are at risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount not usually required by typically developing children. Advances in medical science and technology have enabled children with complex medical problems to survive to older ages and to live longer in our communities. These children are a growing population who have become frequent users of the emergency medical system. Acutely ill children with special health care needs account for 24% of pediatric emergency department visits. Children with special health care needs are usually in the care of adults who have been trained to manage most of their medical emergencies.
Emergency Medical Services (EMS) is mainly activated during the time of a crisis. This crisis may occur because of equipment failure or panic by the caregiver who is fatigued or new at caring for their child. Sudden respiratory distress or arrest will invariably prompt a call for help. However, a survey of families with CSHCN conducted at Children’s National Medical Center shows that although 97% of the families had sought emergency care in the past, only 23% of the caregivers had ever called 911 before, and 93% had driven their child to the hospital during an emergency. There are several reasons why parents choose not to call 911. The results of the aforementioned survey showed that 30% of the parents/caregivers were afraid that their child would get transported to the nearest community hospital and not taken to the hospital where the child is normally followed. Ten percent of the caregivers did not trust the care that 911 could provide, and 36% of the parents felt that they could transport their child faster by driving them directly to the child’s home hospital.
Since children with special health care needs often present with uncommon medical conditions that EMS is not routinely exposed to, the purpose of this program is to improve the pre-hospital care responder’s knowledge and comfort level with chronically ill and technology dependant children and the EMS issues that affect them. The intention of this program is to provide basic information on various chronic medical conditions these children may have, as well as technologies and equipment that may be necessary for their survival. Ultimately, the goal is to educate the EMS community in how to care for and manage children with special health care needs in the event of a medical or traumatic crisis.
For more information, please contact the program office.