The Emergency Preparedness and Response Initiative at the University of Massachusetts Medical School’s E.K. Shriver Center works to increase disaster resilience for and with people with autism, disabilities, chronic and mental health conditions, and others with potential access and functional needs. We provide technical assistance, training, resource development, and customized consultation to advance health equity, efficient emergency planning/response, and regulatory compliance to enhance community resilience. We believe that good emergency planning for people with disabilities and others with access and functional needs is good emergency planning for the whole community.

On a practical level, for people with autism and others, emergencies are about disruptions, for example to the built environment, services and supports, and routines. These disruptions can be very challenging. Parents of children with autism and disabilities whom we surveyed told us about the many disruptions they experienced during emergencies: loss of power for wheelchairs and ventilators (child unable to move independently; problems breathing without ventilator); no heat (child developed health problems when body temperature dropped; specialized equipment unusable due to cold); power outage (not able to use computer/DVD/video game to help keep the child calm and calm); closed schools (no child care; no special education services); trouble coping with a different looking environment, sleeping in a new place, and acclimating to a changed routine (causing an extreme behavioral response).

Our Initiative was founded after the September 11, 2001 terror attacks and Hurricane Katrina, which illustrated gaps in emergency planning and response for and with people with disabilities. Historically, American emergency plans at the local, state and federal levels omitted consideration of the likely emergency needs of children and adults with disabilities. Emergency plans assumed that all Americans could walk, talk, follow directions and evacuate themselves by car. Unfortunately, history and recent experience has shown that people with disabilities, including autism, may be particularly vulnerable to the negative impacts of disasters and emergencies. As a parent of a child with a severe disability I am pleased to see the many positive changes that have been made at all levels in the last dozen years. As a professional in the field I know that there is still more work to do.

Our Work

We serve individuals, their families and support networks, local governments, first response organizations, public health and healthcare organizations with a variety of programs and services:

• Self-preparedness education for adults with autism, disabilities, and Traumatic Brain Injury (TBI)
• Parent preparedness training
• Family emergency planning notebook and emergency plan template
• Community Health Center emergency planning tools and consultation
• Service provider organization consultation
• First responder, public health preparedness and emergency manager online and classroom based educational programs (including simulation based courses)
• Local government emergency planning technical assistance, including gap analysis and facilitation of local inclusive emergency planning meetings
• Local government inclusive emergency planning workbook
• Technical assistance for local emergency drills and exercises
• Research

One of our projects has been replicated outside of the U.S. Further replication would be possible by someone with an understanding of the relevant disability rights law and policies, international norms (such as the U.N. Convention on the Rights of Persons with Disabilities), and local emergency planning and response practices.

Advance Planning for People with Autism

People do things every day to keep themselves safe and healthy, like buckling car seat belts, having a healthy diet, and exercising. Emergency planning is another way to keep a household safe and can be a part of a family safety discussion. Advance planning can save lives, reduce injuries and property damage. It can lower fear of the unknown and help individuals and families feel strong, in control, and self-sufficient. And it’s easy to do:

• Do “what if” thinking and planning. What if you have autism and rely on the same daily routine to stay calm and safe, and what if your family evacuates to a hotel where you have to sleep in a different bed? What’s the plan?

• • Think about how to quickly share key information about yourself (or your child) with a neighbor who is helping you, a first responder, or emergency shelter staff
  • Create a household communication plan so you know how to reach loved ones. Have at least one out of area contact
  • Plan to take care of yourself and your household for at least 72 hours before help arrives
  • Decide in advance where you’ll go if you have to evacuate. You may prefer to stay with a friend or family member. Emergency shelters should be places of last resort. They’re often noisy and crowded and may disrupt your routine
  • Gather some basic necessities, including a flashlight/batteries, extra food and water, etc., if you are able
  • Make a list of medicines, adaptive equipment, and assistive technology (include directions for use and vendor information)
  • Practice your emergency plan
  • Share your emergency plan with your support networks
  • Talk to your child about handling emergencies while staying home alone, if they are able

• Ask your local emergency manager or public health preparedness planner about:
  • Potential local emergency shelter sites
  • How the community will share emergency warnings, alerts and other key information with you
  • How you should contact your community during an emergency (it may not be via 9-1-1 phone service)
  • How to participate in local emergency planning and response efforts
  • How the community is working to develop an inclusive emergency plan

• Advocate for your rights under the Americans with Disabilities Act (ADA) and other laws:
  • Equal access to emergency services in the least restrictive environment (most people with disabilities should be served in general population emergency shelters)
  • Free “reasonable modification” to emergency programs, policies and procedures unless modifications would fundamentally alter the nature of the program, service or activity, or impose an undue financial or administrative burden (modification examples: quiet space at a shelter; bringing assistive technology and comfort items when evacuating)
  • Service animals (dogs and miniature horses needed because of a disability and trained to perform specific functions) are allowed in emergency shelters but comfort animals and pets may not be
  • Advocate with your child’s school to include an emergency plan in the individualized education plan (IEP). Discuss how your child can participate in fire drills and other emergency practices
  • Advocate with your service provider and ask how the agency plans to continue to serve you and other clients in an emergency.

Sue Wolf-Fordham
Instructor, Department of Family Medicine and Community Health, and Director, Emergency Preparedness Initiative
University of Massachusetts Medical School, Eunice Kennedy Shriver Center
2017