2. Preparedness

2.3. Ensuring the Safety of Children with Special Health Care Needs and Disabilities During Disasters

Patricia Frost, RN, PHN, MS, PNP; Kara Kowalczyk, MD; and Yae Sul (Hazel) Jeong, MD, MS

Objectives

  1. Identify three contributing factors that make children with special health care needs more vulnerable during a disaster.
  2. Identify three considerations for establishing an effective and comprehensive emergency disaster plan for children with special health care needs.

Introduction

Disasters and emergencies pose significant risks to all populations. Children with complex medical needs and disabilities, however, are disproportionately affected and face unique challenges that require tailored planning and response. These children often rely on specialized medical equipment, medications, and assistance with activities of daily living, making standard emergency procedures insufficient.

This article provides disaster and emergency management guidance tailored to the care of children with complex medical needs and disabilities. It is intended for pediatric health care providers, emergency managers, schools, parents, and caregivers.

Identification and Planning

According to the Centers for Disease Control and Prevention (CDC), nearly 1 in 5 children in the United States has one or more physical, intellectual, developmental, or long-standing medical disabilities or conditions. Children and youth with special health care needs (CYSHCN) is an umbrella term used to describe this population.

A 2020 Child Trends report found that these children and youth experience higher rates of:

  • Family poverty
  • Disparities in access to a medical home
  • Childcare difficulties
  • Lack of health insurance, affecting 1 in 34 children
  • School absences and repeated grades

These families disproportionately rely on pediatric regional center specialists for routine care. After a new diagnosis, families may face the choice of relocating near the child’s comprehensive medical team or traveling hundreds of miles to access care. These centers are often hyper-regionalized, and under normal conditions, families may participate in their child’s care while the child is admitted.

Awareness of the challenges associated with disaster preparedness and readiness is rarely built into this process. As a result, CYSHCN may experience disproportionate effects, service disruptions, and adverse outcomes during disasters. Examples include:

  • Inadequate or disrupted power for families with children who are technology-dependent.
  • Inability to evacuate because accessible transportation is unavailable, particularly for families without vehicles or those who rely on public transportation.
  • Shelters that lack quiet rooms for children who are prone to overstimulation in high-stress environments, including children with autism spectrum disorder.
  • Youth who use wheelchairs becoming stranded or grouped on upper floors of a school while awaiting evacuation assistance from emergency responders.

Disability and Disaster Legislation

CYSHCN are part of the broader access and functional needs population and should benefit from the rights and protections established through disability legislation. Local jurisdictions are responsible for creating many of the necessary services and accommodations, while families must often learn how to access them.

The following resources may be helpful when preparing for a disaster or catastrophic event:

The disability community commonly uses the term YOYO, meaning “You Are On Your Own.” Parents, caregivers, schools, childcare providers, and health systems must work together to ensure CYSHCN and their families have the information and resources needed to reduce and mitigate adverse consequences.

Identify Needs

Create a detailed list of the child’s specific medical needs, including medications, equipment, equipment power sources such as batteries or generators, dietary requirements, and communication methods.

Establish a Comprehensive Emergency Plan

Schools, caregivers, and health care providers should collaborate to create emergency plans that address the specific needs of children with complex medical requirements. Plans should include:

  • Medical information: Maintain comprehensive documentation of medical conditions, required medications, equipment, and instructions for use. The American Academy of Pediatrics and American College of Emergency Physicians emergency information form can help families document these needs. Review and update the information regularly.
  • Emergency contacts: Maintain current contact information for health care providers, family members, and emergency services. Disability organizations recommend identifying at least five contacts, including neighbors and family members, who can check in and assist during an emergency.
  • Evacuation procedures: Establish and practice clear evacuation routes and methods that account for mobility limitations and sensory needs.

Communication Strategies

Providing situational awareness and maintaining communication with families are crucial during an emergency. CYSHCN families may need additional time to evacuate and should begin preparing as early as possible when an evacuation may be required.

  • Talk with the child’s doctor: Discuss the disaster plan and the child’s specific needs.
  • Talk with the local fire department and EMS: Individuals with special needs, particularly those who are technology-dependent, may be flagged in dispatch systems so responders know about their needs before an emergency.
  • Register with local services: Determine whether the community offers programs to assist individuals with disabilities during emergencies.
  • Create a family communication plan: Use verbal, written, and visual communication methods to ensure information reaches everyone, including individuals with sensory or cognitive impairments.
  • Provide training: Train caregivers, teachers, and emergency personnel to communicate effectively with children with disabilities. Conduct periodic drills to confirm that the family communication plan works.

Medical Supplies and Equipment

Access to essential medical supplies and equipment must be prioritized during a disaster. Recommended strategies include:

  • Emergency kits: Prepare and maintain kits containing necessary medications, backup batteries for medical devices, and other essential supplies.
  • Supplier partnerships: Establish relationships with local suppliers and pharmacies to support the timely replenishment of supplies.
  • Backup power: Work with utility companies and local fire agencies to place individuals with power-dependent medical needs on priority restoration lists. Arrange battery backup and identify community locations, such as fire departments, where power may be available.

Shelter and Support Services

Not all shelters are equipped to meet the needs of children with disabilities. Technology-dependent CYSHCN families may seek shelter at local hospitals to obtain power and access medications and durable medical equipment.

Key considerations include:

  • Accessibility: Confirm that shelters are physically accessible and can accommodate medical equipment. Functional Assessment Service Teams (FAST), typically consisting of two to eight trained members, may be deployed to general population shelters to conduct functional assessments before and during shelter operations.
  • Specialized services: Ensure access to staff trained to support children with disabilities and provide necessary medical care. Families may require additional space and quiet accommodations.
  • Service animals: Shelters must have plans to accommodate service animals used by CYSHCN and their families.
  • Designated safe areas: Establish safe areas tailored to the comfort, security, and accessibility needs of children and families with special needs.

Psychological Support

Disasters are traumatic, particularly for children with disabilities who may struggle with changes to routines and environments. Individuals with pre-existing serious mental illness may also be less prepared for a disaster. Children, families, and communities need support during recovery as well as assistance preparing before an event.

Interventions that improve self-efficacy promote resilience and reduce disaster-related psychological distress.

  • Counseling services: Provide access to mental health professionals experienced in working with children with disabilities.
  • Routine and stability: Maintain as much normalcy as possible in daily routines to provide comfort and stability.

Training and Drills

Conduct regular emergency drills tailored to the needs of children with disabilities. These drills should prepare children, families, providers, caregivers, and school personnel.

  • Inclusive drills: Include children with disabilities and their families in drills and practice scenarios to identify and address potential gaps.
  • Feedback mechanisms: Collect participant feedback and use it to continually improve emergency plans and procedures.

Common Barriers and Challenges

Families and children with complex medical needs face numerous obstacles during emergencies and may be less likely to be prepared for disasters. Common barriers include:

  • Mobility issues: Difficulty evacuating because of physical disabilities or the need for specialized transportation.
  • Communication barriers: Difficulty receiving and understanding emergency information because of sensory or cognitive impairments.
  • Medical dependencies: The need for continuous access to medications, medical equipment, and skilled caregivers.
  • Sensory sensitivities: Distress or behavioral challenges caused by overwhelming sensory stimuli during evacuations or in shelters.
  • Lack of accessible facilities: Inadequate shelter accommodations for children with physical disabilities or specialized care needs.
  • Coordination and training gaps: Insufficient training for emergency personnel who must support children with disabilities, complex medical needs, or durable medical equipment.
  • Emotional stress: Increased anxiety and trauma caused by disruptions to routines and exposure to unfamiliar environments.

Takeaway Points

  • Comprehensive planning: Develop detailed emergency plans tailored to the unique needs of children with complex medical requirements.
  • Effective communication: Use multiple communication strategies to ensure information is accessible to children and their caregivers.
  • Regular training: Conduct inclusive drills and training to prepare all stakeholders for emergencies.

Action Item

Reflect on the current emergency plans at your school or health care facility. What specific changes could better accommodate children with complex medical needs and disabilities?

Additional Information

Training and Webinars

Books

  • Who Cares? The Real Patient Experience, M. Winger (2023).

Journal Articles

Webpages

Resources for Families of CYSHCN