Children and Youth with Special Healthcare Needs in Emergencies

A boy using a walker

Nearly 1 out of every 5 children in the United States has a special healthcare need. Children and youth with special healthcare needs (CYSHCN), also known as children with special healthcare needs (CSHCN), require more care for their physical, developmental, behavioral, or emotional differences than their typically developing peers. A special healthcare need can include physical, intellectual, and developmental disabilities, as well as long-standing medical conditions, such as asthma, diabetes, a blood disorder, or muscular dystrophy.

All children have unique needs in emergencies, but care for children with special healthcare needs is often more complex because of their various health conditions and extra care requirements. They may have a hard time moving from one place to another, urgent or constant medical needs, difficulty communicating or have trouble with transitioning to different situations. A disaster can present all these difficulties at once. Knowing what to do can help maintain calm and keep your family safe. Read more about the real stories of children with special healthcare needs preparing for and responding to emergencies.

Planning is key. It is important for families to have an emergency care plan in place in case a public health emergency like a natural disaster, act of terrorism, or disease outbreak occurs. If there is a child with special healthcare needs in your family, you and your family can prepare by developing a written emergency care plan and practicing your plan. For example, a plan can include medicines or assistance devices that your child needs. If possible, let your child help make the plan. Healthcare providers can work with families of children with special healthcare needs to make sure the child’s needs are covered in the family emergency plan and to identify support networks in your community.

Appropriate response. Stay as connected as possible with children and with others, as these connections can help in providing care and support in an emergency while distracting children to lessen their worries and anxiety. Talk to children about what is happening in a way that they can understand. Keep it simple and consider the child’s age and type of disability. For example, it may be hard to know how much information a child with autism is learning through television and conversations. Adults may have to look for clues that provide information on the feelings and fears of these children.

Children with special healthcare needs may need special support services, including medicine and medical equipment, which typically are not available in traditional emergency shelters. In addition, children requiring medical services are not legally able to provide consent for treatment. If your child has specific equipment needs, and/or the needed equipment requires electricity to operate, notify local Emergency Medical Services and other responders of these needs in advance of an emergency. The American College of Emergency Physicians (ACEP) and the American Academy of Pediatrics (AAP) developed an Emergency Information Form to help emergency care professionals and healthcare providers give appropriate care for children with special healthcare needs during an emergency. These children should also have access to appropriate resources for safe transportation during an emergency. Families can learn more about safe transportation for their child with special healthcare needs in AAP’s Transporting Children With Special Health Care Needs.

After the disaster. A disaster can have long-term effects on the mental and emotional health of all children. Coping with a disaster can be particularly difficult for children with disabilities. Children who have serious emotional and behavioral problems are at high risk for severe stress after a disaster or traumatic event. In many cases, it may help to maintain as much of a normal routine and environment as possible. It is important that parents, caregivers, and healthcare providers know how to help children cope after an emergency to support their health and well-being.

Additional Resources:

Preparing Children with Special Healthcare Needs for an Emergency

Emergency Preparedness for Families with Special Needs

Children and Youth with Special Health Needs

Transporting Children with Special Health Care Needs

Emergency Preparedness for Children with Special Health Care Needs

Promoting Adjustment and Helping Children Cope

Make a Plan: Individuals with Disabilities

Guidance: Including Children with Disabilities in Humanitarian Action

Checklist for Recovery and Reconstruction: Considerations for Including Children with Disabilities in Recovery and Reconstruction

Preparedness Checklist: Considerations to Include Children with Disabilities in Preparedness

Child Health USA, 2014: Children with Special Health Care Needs

Resources for People with Disabilities, Access & Functional Needs

MCH Directors, CSHCN Directors, and State Family or Youth Leaders by State