The CPHRC recently completed a four-year research project to understand and address the information needs of families with children and youth with special health care needs (CYSHCN) during disasters. The project was funded by the Centers for Disease Control and Prevention, who were also collaborators.

As part of this project, we developed a toolkit of materials for families of CYSHCN and their healthcare providers to help address these information needs. We reviewed each of the materials with families of CYSHCN and health care providers, and incorporated their feedback into revised versions of these materials. 

Disaster Preparedness Checklists - Tailored for Health Conditions

The families who participated in our study indicated a need for clear, concise checklists that could help them prepare for emergencies. They also expressed a desire for more targeted information that addressed the unique needs of their child. We created multiple versions of a disaster preparedness checklist, each of which features unique information targeted to specific health care needs including physical disabilities, intellectual or developmental disabilities, and hearing or vision loss.

Checklist for Families with Children with Physical Disabilities

This checklist is designed specifically for families who have children with physical disabilities to help them get ready for emergencies that may keep them at home without power or force them to leave their home urgently.

It includes guidance on evacuating a child with physical disabilities, planning for equipment that requires power, and questions to discuss with your child's durable medical equipment provider.

Download Checklist (pdf)

Checklist for Families with Children with Intellectual or Developmental Disabilities

This checklist is designed specifically for families who have children with intellectual or developmental disabilities to help them get ready for emergencies that may keep them at home without power or force them to leave their home urgently.

It includes guidance on communicating during emergencies, helping your child cope, and thinking through your child's unique needs during a power outage or evacuation.

Download Checklist (pdf)

Checklist for Families with Children with Hearing or Vision Loss

This checklist is designed specifically for families who have children with hearing or vision loss to help them get ready for emergencies that may keep them at home without power or force them to leave their home urgently.

It includes guidance on communicating during emergencies, helping your child cope, and thinking through your child's unique needs during a power outage or evacuation.

Download Checklist (pdf)

Emergency Evacuation Shelter FAQ

An important part of planning for a disaster is knowing where your family will go if you need to evacuate your home.

This one-page fact sheet addresses common questions about emergency evacuation shelters to help families with CYSHCN learn what to expect at emergency shelters and help them to determine whether these shelters should be a part of their evacuation plan.

Download FAQ (pdf)

Local Resource Guide

Families of SHCN expressed a need to be connected with local sources of credible disaster information. This customizable, one-page local resource guide is designed to help connect families to credible resources of disaster information in their area. The example included here provides resources for the Philadelphia area, but this template can be edited and customized by any jurisdiction to reflect their local resources and accurate information sources during a disaster.

This template also includes a section at the bottom where health care providers can include their practice contact information before sharing with their patients.

Download Local Resource Guide (Word doc)

Checklist for Pediatric Medical Practices

Pediatric practices are trusted sources of information before, during, and after disasters, especially for families with CYSHCN.

This one-page checklist is designed to help pediatric practices prepare for emergencies as well as to help them prepare their CYSHCN patients for emergencies.

Download Checklist for Pediatric Practices (pdf)