How-To

Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

Family-Centered Planning:
Preparing Before an Emergency

Author(s)

Julia Sterman is an assistant professor in occupational therapy and rehabilitation science at the University of Minnesota in Minneapolis. She may be reached at sterm154@umn.edu.

Preparing is one of the best ways for families to increase resilience to natural hazard emergencies such as flood, fire, severe snowstorm, or tornado. To be appropriately prepared for an emergency, children with intellectual and developmental disabilities (IDD) and their families need tailored information specific to their child’s capabilities and support needs (Hipper et al. 2018; Stallwood 2006). In this article we provide families of children with IDD-specific ways to support family preparedness.

Preparedness is not a concrete endpoint. Emergency planning is an ongoing process that evolves as your plan develops and your family’s needs change. We will also discuss ways you could seek additional support to prepare.

Learn about natural hazards in your area

Learning about likely hazards where you live is an important step in becoming prepared. The Federal government, the Red Cross, and local organizations have broad information on preparing for hazard emergencies.

For example, here are resources on preparing for a winter storm:

Here are resources on preparing for a wildfire/bushfire:

Plan for “stay” and “go” scenarios

You should consider two broad scenarios when preparing. A “stay” scenario, if you had to shelter in place for up to a week, such as a snowstorm; and a “go” scenario, if you had to leave the house quickly for up to a week, such as a fire or flood.

To think about what and how to prepare, you should consider your child’s support needs in everyday life, and then consider what supports they would need in emergency. Here are three examples of support need considerations.

Hand-drawn pictures of communication devices, a bottle of water, batteries, a flashlight, a house, and a car packed with suitcases on top.

Communication

How does your child typically communicate? Do they use a communication device? Do you have a back-up way to charge it like a battery pack or the car battery? Does your child’s communication pattern change during a stressful event? Would they require additional communication support during emergencies, such as communicating through texting or a dedicated communication device?

Sensory needs

How does your family meet your child’s everyday sensory needs? Which of those strategies might support their needs in an emergency scenario (e.g., chewy items, compression garments, or noise cancelling headphones)?

Emotional regulation

What supports your child to stay calm during stressful events? Do they have a calming item like a blanket or stuffed animal? Do they do well when given specific tasks to do? Does singing songs, being sung to, counting, drawing, or reading help to distract them?

Go scenario

To prepare for a “go” scenario, you should gather required items and have them in a “go bag.” This includes general items such as extra food, a flashlight, and water, and items specific to your family’s needs. Items may include ways to support your child’s routines in an unfamiliar environment, a “social story” to support your child’s understanding of the events, or extra medication. Families may want to compile a list of current medication, medical providers, and relevant medical history for all of its members. Your child’s pediatrician could support you to fill out an emergency information form. Consider everyday items that you would want to take such as clothes, mobility equipment (e.g., wheelchairs, walkers), communication devices (e.g., voice output device, picture cards, or a tablet with a communication app), medical equipment (e.g., feeding pumps, monitoring equipment, or tubing), or favorite items. You should consider any allergies in your family, and how you would plan for them if you were away from your home.

Talk with people you are close to about your emergency plan, and ways that they can support you and your family in an emergency. If you do not know where you would go or who could support your plan, think about how you could develop community connections. Can you get to know your neighbors better? Are there people you could ask from your child’s school, your work, your volunteering roles, church, temple, or mosque? Do you have family locally or within driving distance? What other community connections do you currently have or could you make to support your network? If the evacuation option that would work best for your family in an emergency is an emergency shelter, contacting your community’s emergency services can enable them to plan for your family’s specific support needs.

Stay scenario

In a “stay” scenario, many items would be similar from the “go” scenario, such as gathering items to support your child’s health (e.g., medication, catheters or specific formula), and maintaining a week’s supply of food on hand that align with your family’s dietary needs and preferences. In this situation, however, you should also consider back-up power. A generator may be needed for larger devices like feeding pump or oxygen, or you could use your car’s battery for devices such as phones/tablets. You should also consider items that you would need to maintain your daily routines if you were stuck at home.

It is important to practice your family’s plan with your entire family. For example, doing a fire or tornado drills or simulating the power going out are important exercises. You should talk through potential emergencies in a way that makes sense for your child and your culture. You could use a story or video to talk about what would happen in an emergency, or download phone apps such as Monster Guard by the Red Cross, or include emergency relevant icons on your child’s communication device after you have introduced the topic to allow them to ask questions. Family preparedness is an ongoing process, and your child will benefit from repeated discussions about and practice for emergency situations.

Seeking additional support

You may need additional help to plan and be ready for emergencies. People you might want to have a conversation with about how they can support your family prepare for emergencies include:

  • Providers such as social workers, occupational therapists, or pediatricians, to help plan for your child’s specific support needs.
  • Emergency services departments that can describe hazard risks in your area and offer support in planning for them.
  • Local advocacy groups, which can expand your network and advocate for your child’s disability needs in an emergency. Advocacy groups can include: The ARC, PACER, Family Voices, Autism Society of Minnesota, or Multicultural Autism Network.
  • Your child’s school, where you can advocate for the inclusion of emergency preparedness as part of the curriculum.
  • Your pharmacy or insurance company, to inquire about stockpiling medication or other medical or health items.
  • Case managers, to advocate for emergency preparedness items (e.g., a generator or back-up supply of items) to be included in your child or family’s disability support.

Begin to develop an emergency preparedness plan with your family that considers your family’s unique support needs in both stay and go scenarios. You should talk about and practice your plan with your whole family and consider any additional support community providers and organizations can offer to develop your plan.

References

  • Hipper, T. J., Davis, R., Massey, P. M., Turchi, R. M., Lubell, K. M., Pechta, L. E., & et al. (2018). The Disaster Information Needs of Families of Children with Special Healthcare Needs: A Scoping Review. Health Security, 16(3), 178–192. https://doi.org/10.1089/hs.2018.0007

  • Stallwood, L. G. (2006). Assessing Emergency Preparedness of Families Caring for Young Children With Diabetes and Other Chronic Illnesses. Journal for Specialists in Pediatric Nursing, 11(4), 227–233. https://doi.org/10.1111/j.1744-6155.2006.00074.x