Emergency preparedness for children with special health care needs - Children's National

For many families, being ready for disasters and everyday emergencies isn't just about a checklist-it's a mindset.

Nearly 1 in 5 children in the United States has a special healthcare need. If you're a parent or caregiver of a child or youth with special health care needs (CYSHCN), your emergency planning requires more than just the typical list of supplies to include in a disaster kit.

Unique challenges

Children and youth with special health care needs may rely on a range of supports that require extra planning in an emergency. Here are ways to prepare:

• Medications and formulas: Keep at least a week's supply of medications in a separate, labeled container. Ask your pharmacy about emergency refill options and talk to your child's provider about early refills if needed. For specialty formulas, store extra in a cool, dry place and have insulated bags or portable coolers with ice packs on hand in case refrigeration is unavailable.
• Medical equipment: Make a checklist of all devices your child uses daily-such as feeding tubes, pumps, tracheostomy supplies, ventilators, or wheelchairs. Pack duplicates of small items in your go kit and clearly label them. For larger equipment, ask your provider if portable versions are available and practice disassembling or transporting devices so you're ready in a hurry.
• Transportation and accessibility: Plan evacuation routes that accommodate wheelchairs or other mobility aids. If possible, keep a lightweight, portable ramp in your vehicle. Research ahead of time which local shelters or community centers are accessible and confirm they can support children with complex medical needs.
• Backup power: Many medical devices depend on electricity. Consider a battery backup system or generator designed for safe use. Ask your equipment provider whether devices have external battery packs and practice swapping them out. Register your child with the local utility company's medical priority program so power restoration can be expedited during outages.

With these additional supplies and steps, your disaster go kit may be too large for a single bag - but being prepared makes all the difference.

Listen to the real experiences of these mothers and advocates on the podcast, Ready Prep Go!:

Build a care map

A care map visually organizes the people, systems, and services involved in your child's care. Having one ready helps emergency responders, schools, and caregivers quickly understand your child's network of support.

To create an effective care map:

• List all providers: Include primary care doctors, specialists, palliative care, and therapy teams. Note their names, roles, and contact information.
• Add pharmacies and equipment suppliers: Identify where prescriptions are filled (retail, compounding, infusion) and who provides critical medical equipment.
• Include home support: Note nursing agencies, home health aides, or therapists who regularly care for your child.
• Connect the school team: Document teachers, aides, the school nurse, and any special education or IEP contacts.
• Emergency and legal details: Add guardianship, backup caregivers, and key family contacts.

Keep a printed copy of your care map in your disaster kit and share it with your child's school, caregivers, and local emergency responders.

Complete an Emergency Information Form (EIF)

An Emergency Information Form (EIF) is a standardized document that summarizes a child's medical history and provides critical details during a crisis. It ensures hospitals, first responders, and temporary caregivers can act quickly if you're not immediately available.

An EIF typically includes:

• Child's identification (name, birth date)
• Contact information (address, emergency contacts)
• Healthcare providers (primary and subspecialty physician names)
• Medical conditions
• Medications and allergies

Store copies of the EIF in your child's backpack, your car, and your go kit. Keep a digital version on your phone and share it with your care team. Update it at least once a year or whenever medications or providers change.

Advocate for policy and system change

Many insurance and medical supply companies don't allow early refills or stockpiling of medications. During an evacuation, many shelters may not be equipped to handle a child's complex care needs. Families, providers, and policymakers must work together to solve these challenges and strengthen community-wide emergency preparedness.

Your child's safety during disasters depends on more than a checklist - it depends on a community ready to support you.

Share your story. Your lived experience can guide real improvements in emergency planning for children with special health care needs.

For more information, check out this resource guide from the Pediatric Pandemic Network.

This article is the second in a four-part series for National Preparedness Month. Stay tuned all month long for more family-friendly emergency preparedness tips.