Emergency Preparedness: Creating a Disability-Inclusive Emergency Plan

A 'Living Rare' Editorial

By Aston Martinez Published 2 years ago • 21 min read

Emergency preparedness is an important topic for anyone - your average person should have a set plan as to what to do during a natural or manmade disaster, what to take if ordered to evacuate, and have a backup plan for sheltering in place. However, people with chronic health conditions need an emergency preparedness strategy that maps what to do during a flare, what to take to the emergency room, and where to store backup medication and an extra set of clothes just in case. The truth of the matter is that having an emergency preparedness plan can (and often does) save lives!

Recent events and conditions around the globe – such as the war in Ukraine – have brought this topic to the forefront of discussions among the disabled community. However, emergency preparedness for those with rare diseases and disabilities typically involves quite a bit more thought and planning, and it can initially seem overwhelming for patients and/or their carers.

The guide below covers everything you’ll need to include and account for to create a comprehensive inclusive emergency preparedness plan suitable for your unique needs! It’ll first guide you through the three core steps that are vital for creating any emergency preparedness plan:

Get informed
Make a plan
Build a kit

Next, it includes a list of items and tips specific to various types of disabilities, as well as advice for carers and rescuers in the event that disaster strikes and help may be needed.

Get Informed

First things first: you can’t adequately prepare if you’re unsure what you’re supposed to be preparing for. The Federal Emergency Management Agency (FEMA) recommends getting informed.

Know what type of disasters or emergencies are most likely to impact your area. For instance, it doesn’t make a whole lot of sense to center your emergency plan around hurricanes if you’re landlocked in the center of the United States. Could it happen? Possibly. Is it very likely? No. It’s better to spend that time and energy primarily planning for whatever makes the most sense for you, your location and your specific medical condition.
Figure out how you’ll be getting your notifications and who you want to be in direct contact with in the event of emergencies. Follow local weather alerts and/or keep an NOAA Weather Radio on hand. Several people who live with autoinflammatory diseases experience flares and chronic pain episodes when the barometric pressure steadily drops. When the barometric pressure steadily drops, it signals an approaching storm. For other potential emergencies, keep your designated emergency contacts up-to-date. Even if you are unable to call and speak, text messaging or sending a group message via Telegram, Signal or even WhatsApp can help make sure your designated emergency contacts are able to stay up to date and execute on last minute, unexpected requests when necessary. For those with vision or hearing impairments, it may be necessary to consider more accessible options for staying informed.
Set up your Medical ID if you have an iPhone. On apple phones, under Settings, you can enter important data, such as your blood type, medications, allergies, reactions, weight, and emergency contact. When you use Emergency SOS to call emergency services, it also sends a message to your emergency contacts with your current location and a mobile number. For other smartphones, there are Medical ID apps you can download (special thanks to Know Rare for this valuable tip).

It’s also a good idea to go ahead and start obtaining information about accessible shelters, assistance services, or resources available in your local community. Perhaps, a local friend or family member would be willing to store a “to-go” bag for you, complete with vital spare medication, heating pads, ice pads, comfortable clothing, snacks, etc. Preparing a personalized to-go bag and storing it at a trusted location outside of your home, can really help when it’s time to nail down your emergency action plan!

Make a Plan

This phase of the process is arguably the most labor-intensive and requires thoughtfulness. But you don’t have to go through it alone. In fact, the first key step in creating your plan is to first designate your personal support network.

1. Designate your personal support network

Your personal support network will ideally consist of a trustworthy group of people (any amount will do, but preferably at least 2-3) that you can count on to:

Help you identify and access resources.
Help you cope through stressful emergency situations.
Help you create & execute your emergency action plan.
Provide you with the necessary care and support.
Advocate or communicate on your behalf, if needed.

They could be caregivers, care partners, close family/friends, trained medical staff, neighbors, or co-workers. Once you’ve determined who you’d like to include in your personal emergency support network, it’s important to contact them and verify that they’re willing and able to do what you’ll need them to do.

When your emergency plan is complete, take time to fully review and discuss your emergency plan with your personal support network. Execute practice drills if possible so that everyone involved is aware of exactly what to do and how to help you. Exchange any necessary information and items (a spare set of home and/or car keys, organized printed binder complete with info about your disabilities, medications, etc.) and be sure to keep their contact information somewhere you can easily access it during an emergency or be sure to include their contact information in your smartphone Medical ID app.

2. Perform a personal assessment

The next recommended step in creating your plan is to perform a personal assessment like the one designed by the Red Cross. This will help you determine what unique factors you might need to account for in order to create a truly comprehensive and inclusive plan. Below is an example of some of the important questions included in the Red Cross personal assessment, but you can find the full version here.

Do you require assistance in daily living, functioning, and personal care?
What will you do if you lose any utility services during a disaster (water, electricity, propane, etc.)?
Do you regularly use or depend on any adaptive equipment, adaptive feeding devices, mobility aids, or assistive devices?
Do you use or rely on any personal care equipment, such as shower chairs, transfer benches, or bedside commode?
Is any of your medical or assistive equipment electricity dependent? If so, do you have a backup power supply of some sort if you lose electricity?
How will you deal with any debris or damage to your home that makes it difficult to reach an exit or safe space?
Do you require accessible transportation, such as a specially equipped vehicle?
Do you rely on someone outside of the household to run errands? If so, how might you manage to get your groceries, medications, or medical supplies if they cannot get to your home for any reason?
Do you live or work in a large building or high rise? If so, are you aware of the exit routes, alarm locations, and safe evacuation plan for that building? Are there other accessible escape routes if the elevator stops working?
How will you call for help or alert others if you need assistance during an emergency? If you have disabilities that impact communication, how might that present challenges and how might you respond to those challenges?
What can you do if you lose ramp access or can’t find your mobility aids?
Do you have service animals? If so, do you have another caregiver that can take care of them if you are unable to meet their needs? Do you have all the necessary medical information and licenses for your service animal?

Now, it’s time to move on to actually creating a plan. Keep in mind that any plans you make need to account for all members of the household, as well as common scenarios such as:

What to do if you get separated from your support network …
What to do if you have to shelter in place …
What to do if you have to evacuate and/or need transportation …

3. Fill out an emergency communication plan

In the event that your household members get separated, it’s important to have a household emergency communication plan. You can find a fillable FEMA emergency communication plan template to save and print here. Give a copy to each member of your household to keep with them in their wallet, purse, backpack, or car.

4. Make a plan for sheltering in place

Depending on the type of emergency, you may be asked to shelter in place. The most important thing to consider if you have to shelter in place (aside from your emergency kit and supplies) is to be able to access the safest area of your home. For most people, this would be a basement, stairwell, bathroom, or central hallway. Once you’ve determined which part of your home would be the safest place to shelter in place, you then need to identify a primary and secondary entry/exit to your safe space.

Though you’ll have access to all your items at home, you may have to consider how you’ll be able to run errands, get groceries, receive medication or receive necessary assistance if you can’t leave or caregivers can’t make it to your home.

5. Make a plan for evacuation

If an emergency situation requires you to evacuate, it’s especially vital that you have a plan and a ready-to-go bag to safely expedite the process without leaving anything important for you behind. Emergencies are also inherently stressful, and having a sturdy plan can help to prevent life-threatening mistakes.

Just as you did with your shelter in place, identify both a primary and secondary exit route. Be sure to once again plan for all members of your household and for everyone’s unique needs. Be especially mindful of any children or adults who may struggle in unfamiliar/hectic environments, such as if you must head to a public shelter. Figure out where you would stay, gather information about your local public emergency shelters, and make sure that they’ll be able to accommodate you. Plan for any service animals you may have and determine what resources you’ll need to be able to continue caring for them.

Before finishing up your evacuation plan, figure out what sort of transportation you’ll need and create a transportation plan like this one from Ready.gov! This is especially helpful for anyone without other means of accessible transportation, but it can even come in handy as a backup plan if your current mode of transportation becomes unavailable for any reason.

6. General Tips & Additional Planning Steps

While the above steps are the most crucial planning steps to take, there are tons of other ways you can make sure you’re prepared for any emergency. Furthermore, not all emergency situations will require you to evacuate or take shelter – such as personal medical emergencies or family crisis situations. Regardless of the situation, here are some additional tips you may find helpful:

Check with your local emergency management office to see if your city and/or county maintain any voluntary registries that send targeted assistance to people with disabilities in the event of a public emergency or disaster.
If you receive state or federal benefits, consider how that might be impacted by an emergency situation. For example, receiving your benefits through direct deposit rather than through the mail helps to ensure that natural disasters don’t impede access to necessary benefits.
If you receive any life-sustaining medical treatments such as dialysis, make sure that you know the location, availability, and contact information of more than one facility just in case.
If you use any special equipment, assistive devices, or mobility aids, consider how you’ll evacuate those items and how you’ll replace or repair them if necessary.
Keep an updated list of your medication names, dosages, prescribing physician, and pharmacist information on hand.
If you don’t already own a corded phone or another communicative device that doesn’t rely on electricity, consider getting one. Corded phones can temporarily continue working in the event of a power outage, which allows you to call for assistance if needed.
Another good list to have on you at all times is the login information for your online medical records/patient portals in case of an emergency medical situation. This gives you or your caregiver instant access to any pertinent records that emergency medical staff might need.
Wear a medical alert, tag, or bracelet, and keep any urgent medical information stored on your cell phone/electronic devices in case first responders, rescuers, or medical professionals need to know how best to help you.
If you have any communication barriers or disabilities, consider carrying a few printed cards in your pocket, wallet, or bag that have pertinent information about you and how best to communicate with you.
Keep links or printed copies of any helpful medical articles, studies, or information about your rare conditions for ER physicians/staff that might not know about or understand your condition. Focus mostly on articles that help them understand your symptoms, current treatments, or treatment contraindications. Include whatever you feel would help them to help you!
Re-evaluate your emergency plans on a regular basis (at least once a year, if not more often) and tweak them if necessary. If you undergo any major life changes that would impact your emergency plans – such as moving to a different house, adding/subtracting household members, or changes to your health and how it’s managed – be sure to update your plans as soon as possible.

Build a Kit

The final step may be one that doesn’t happen all at once, which is completely okay. While it’s still important to prioritize getting your kit complete as soon as you reasonably can, there are likely going to be at least a few items that you don’t already have on hand and would need to obtain at a later date. Focus first on the items that are absolutely essential, then add any extras as you’re able to do so.

The National Organization on Disability (NOD) recommends creating two separate kits. The first is your “Ready Kit”, which contains enough supplies for three days of sheltering in place. The second is your “Go Bag”, which contains all the essentials you would need if you had to immediately evacuate. What you include in each one is up to you and your individual needs, and there may even be some overlap between the two.

Don’t forget to include each of the item categories in the checklist below, and when you’re done, store and organize your kits somewhere clean, safe, and easy to access or carry in an emergency.

A 3-day supply of non-perishable foods (make sure that they meet your dietary requirements and that you bring along a manual can opener)
A 3-day supply of drinkable water for the household (at least 1 gallon per person, per day)
A 7-day supply of medications and a list of known drug allergies, if any (you can speak to your pharmacist about how to obtain an emergency/vacation fill of your medications for this)
Any important information and documents, such as a copy of your birth certificate, social security card, passport, proof of address (such as a mailed utility bill with your name on it), emergency communication & transportation plans, and pertinent medical information
Extra medical supplies, such as tubing, syringes, bandages, lancets, or test strips
Any medical equipment, mobility aids, or assistive devices, as well as backup chargers, batteries, or other power sources if applicable
An extra set of important keys, such as to your home or car
Emergency cash or cards
Personal hygiene and sanitary products (soaps, toothbrushes, toothpaste, sanitary pads, etc.)
Alerting items, such as a white distress flag, emergency signal flares, or whistles
A basic first aid kit that includes bandages, tape, scissors, aloe, antibiotic/disinfectant ointments, and anti-inflammatory pain medicine (such as acetaminophen, ibuprofen, naproxen, or aspirin)
Spare changes of sturdy, sensible clothes
A blanket and pillow

Disability-Specific Tips & Recommended Items to Include

There is no one-size-fits-all plan for everyone with disabilities – ideally, your plan should be completely unique and tailored to your individual needs. No one knows and understands your needs quite like yourself, so feel free to take charge and play an active role in refining your emergency plan and building your kits.

Mobility Impairments & Disabilities

Mobility limitations can be difficult to tackle during an emergency, making it all the more important that you plan and prepare in advance. Once again, it’s important to account for any mobility equipment you need and use regularly. For power chairs or electric scooters, have a backup plan and a backup power source if necessary. If you have any areas of the body with reduced sensation, include those in your personal assessment so that whoever assists you will know to check those areas for injuries.

If you live or work in a large multi-story building, speak with the building manager and request that they store an emergency evacuation chair somewhere near a stairwell or somewhere else that you can easily access while evacuating. You can also designate a primary and secondary contact to assist you during an evacuation. You’ll also have to consider whether the public emergency shelters near you are wheelchair accessible, which you can find out by calling them individually or contacting your local municipal office.