For our final post in the Emergency Preparedness and People with Disabilities series for National Preparedness Month, we and our colleagues at AbleData are sharing resources and information related to emergency and disaster preparedness for people with intellectual, developmental, and cognitive disabilities. Examples of these disabilities can include Down syndrome, autism spectrum disorders, dementia, and some types of cerebral palsy and spina bifida. They can also include traumatic brain injury and stroke, which can cause cognitive changes. Some people with these types of disabilities may have difficulty communicating with first responders. Others, such as older adults with advanced dementia, may not comprehend that there is an emergency.

To make things easier during an emergency or evacuation situation, it can help to prepare ahead of time (#PreparedNotScared). Using key principles from National Fire Protection Association’s Emergency Evacuation Planning Guide for People with Disabilities (PDF), we’ve gathered research and resources from the NIDILRR community and elsewhere to help people with intellectual, developmental, and cognitive disabilities, their families, caregivers, and government agencies prepare for and stay safe during an emergency.

For individuals with these disabilities and their families or caregivers:

• Work together to create a go-bag or emergency kit and a plan for what to do in an emergency, whether you will stay where you are to go to the nearest shelter. Create a simple list of instructions that can easily be followed in an emergency. Include where you can find a your emergency kit, all necessary medications, assistive technology (AT) and mobility devices, and evacuation or emergency exits.
• If you are instructing or assisting someone during an emergency, find effective ways to communicate with them, such as drawn or written instructions, or use landmarks instead of general terms such as “turn left.” Keep instructions simple and repeat them if necessary. Practice during the year so everyone knows their role and what to do.
• Keep a contact list of your support network sealed in a watertight container in your emergency kit.
• If you use an alternative communication device or a powered mobility device, ensure there is a backup power source or spare batteries for the device. Keep emergency instructions which will tell emergency responders or rescuers the best way to communicate with you or to assist you physically.
• Include a substitute communication option that can be used if the alternative communication device is not working or can’t be brought along when you evacuate. Examples include communication boards, books, and cards.
• Experiencing an emergency may be overwhelming for some people and stress may worsen any medical conditions. Some people may benefit from bringing a favorite item (e.g., book, music player, trinket) to help them stay calm and focused.
• Brainline, a service of WETA, provides a brochure filled with disaster readiness tips for people with developmental or cognitive difficulties. The brochure is designed to help people with developmental and cognitive disabilities begin to plan for emergencies. It includes information on general and “special needs” shelters, sheltering tips, and creating a ready kit and go bag.
• The Centers for Disease Control and Prevention (CDC) provides disability and health emergency preparedness tools and resources from several states in an in-depth and easy to read webpage. This webpage includes brochures, booklets, guides and other materials and tools that people with cognitive, intellectual, and developmental disabilities and caregivers can use to prepare for an emergency.
• The American Public Health Association (APHA)  has several resources in its Get Ready Campaign to help people with cognitive, intellectual, and developmental disabilities, their families, and their communities prepare for emergencies and disasters:
  • Each year, APHA provides a free and downloadable calendar with fun photos, cute animals, and tips for preparing for disasters and emergencies.
  • APHA also provides answers to frequently asked questions (FAQ) related to preparing for emergencies and disasters from different communities. The topics of these FAQ include information for people with disabilities, information for employers on keeping their employees safe, keeping older adults safe and healthy during emergencies, and what to do during a disaster – including how to protect pets.
  • Finally, APHA provides infographics that provide tips to help people with disabilities, their families, and their communities prepare for emergencies. Topics include essential go-bag supplies, flood safety, preparing for winter storms, home safety preparedness, emergency stockpiling, and preparing for earthquakes.
• American Congress of Rehabilitation Medicine (ACRM) has published an emergency preparedness guide for people with disabilities through its journal, Archives of Physical Medicine and Rehabilitation. The guide includes information on creating and practicing emergency plans, how to respond to emergencies and knowing the signs of stress, additional resources, and an emergency kit go bag checklist.

For emergency planners, Centers for Independent Living, community providers, and others involved with emergency preparedness, the following resources may be helpful in preparing to assist people with these disabilities:

• The Centers for Disease Control and Prevention (CDC) provides materials and presentations from several States that have been used to train emergency management agencies on how to develop plans that address the needs of people with disabilities in emergencies and disasters. The CDC also provides training that addresses the specific needs of people with disabilities for first responders. Finally, the CDC provide community-based resources on how to plan for emergencies and disasters for community-based organizations, such as Centers for Independent Living (CILs) and Aging and Disability Resource Centers (ADRCs), that regularly provide services to people with disabilities.
• The Disability Rights Section of the Civil Rights Division at the US Department of Justice offers An ADA Guide for Local Governments: Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities (PDF). The guide discusses how local governments can make emergency preparedness and response programs accessible to people with disabilities and discusses how making these programs accessible is required by the Americans with Disabilities Act of 1990 (ADA). The guide discusses how local governments can help their citizens with disabilities plan for emergencies, how to provide information in different formats to people with communication disabilities, adopting policies to ensure that ensure that community evacuation plans enable people with disabilities to safely self-evacuate or to be evacuated by others with the use of accessible transportation, creating accessible shelters and staff training, and assisting people with disabilities to return home after being evacuated due to an emergency.
• The Arizona Governor’s Council on Developmental Disabilities (GCDD) sponsored the Emergency Planning Guide for Persons with Developmental Disabilities(PDF), a step-by-step guide designed to aid caregivers in preparing an individualized plan to ensure the appropriate personal and daily care of their loved one in the event the caregiver is incapacitated during an emergency. The guide is divided into three sections for ease of use: Support Systems to assist caregivers with identifying community supports, Daily Schedule helps document the daily routine of a person with developmental disabilities, and Emergency Information Checklist and Cards gives information on preparing for an emergency.
• The Midwest Regional Traumatic Brain Injury Model System Center created a two-part video TBI and Its Implications: A Training Video for Continuing Education for Paramedics and Emergency Medical Technicians (Part 1 and Part 2). The video features signs and symptoms of people with traumatic brain injury (TBI) and how they may influence first responder’s management of people with these injuries. Interviews with medical staff, TBI survivors, and their family members provide in depth information on the symptoms of cognitive/language and behavioral/emotional disabilities that can develop because of a TBI.
• Connect with Centers for Independent Living, Arc affiliates, Brain Injury Association affiliates, and other advocacy organizations as part of the planning process. Inclusive emergency preparedness starts by making space at the table for all who may be impacted.

Over the years, NIDILRR has funded research projects on emergency preparation and safety for people with disabilities. We looked at the history of these research projects and the newest efforts funded by NIDILRR in Inclusive Disaster Preparedness – Progress Made, Progress to Come, part of our NIDILRR at 40 series.

NARIC’s information specialists searched REHABDATA and found several research articles on emergency preparedness and planning that may impact individuals with these disabilities and their families.

• The issue, Family support everyday and in time of crisis from Rehabilitation Research and Training Center on Policies Affecting Families of Children with Disabilities, focuses on the definition, components of, and need for family support.  Topics include tips for families of people with developmental disabilities on how to prepare for and survive a natural disaster, family support provided by the Pyramid Parent Training Community Resource Center after Hurricane Katrina, the challenges that people with developmental disabilities and their families face daily and during emergencies, related research on family support, and more.
• The article, Peer-mentored preparedness (PM-Prep): A new disaster preparedness program for adults living independently in the community, discusses a study that implemented and tested a health promotion program called Peer-Mentored Prep (PM-Prep) that was designed to improve disaster preparedness among adults with intellectual and developmental disabilities (IDD) living independently in the community.  Participants’ knowledge about earthquake safety and preparedness supplies was evaluated before and after the program. The researchers found that the participants’ knowledge increased after participating in PM-Prep.
• The webinar, Emergency preparedness in PAS users from  the Rehabilitation Research and Training Center on Personal Assistance Services and the project Personal Assistance Services (PAS) in the 21^st Century, presents the results of an Internet-based emergency prepared survey from community residents with cognitive and/or physical disabilities who use PAS. Results from the survey show that people with and without disabilities are not prepared for natural disasters, even though disaster events have increased over the years. The webinar discusses disability and caregiver status, emergency preparedness planning elements, prior emergency event experience and its impact, and recommendations form participants to other people with disabilities. The webinar includes resources and questions are answered at the end.
• Emergency preparedness of families of children with developmental disabilities: What public health and safety emergency planners need to know was published in the Journal of Emergency management in 2015. It discusses the results of a survey of parents of children with I/DD to assess their emergency preparedness knowledge, behaviors, and training needs. The results suggest opportunities and methods for public health and safety planning, education and outreach to parents of children with DD who would benefit from targeted training such as information and skill building to develop effective family preparedness plans and connections to local emergency management and responders.
• If you would like to learn more about research and resources from the NIDILRR community and elsewhere, you can download NARIC’s reSearch issue on emergency and disaster preparedness and management for people with disabilities. Also, NARIC’s Research In Focus series, includes articles on support for people with cognitive, intellectual, and developmental disabilities, their families, and caregivers.

If you would like to learn more about emergency preparedness for people with cognitive, intellectual, and developmental disabilities and emergency preparedness, please contact NARIC’s information specialists. If you would like to learn more about assistive technology for people with cognitive, intellectual and development disabilities during an emergency, please contact your state’s Assistive Technology Project.

Check out other articles in this series:

Emergency preparedness for people with visual disabilities.

Emergency preparedness for people with auditory disabilities.

Emergency preparedness for people with mobility disabilities.

Emergency preparedness for people with psychiatric disabilities.