Facilitating Client Emergency Preparedness

Why Us?

• OT practitioners often assist with a client's first disability
  • Never have thought like someone with a disability
  • New mobility and other issues
  • Unsure of resources
  • Assume technology will always work
• We can assist with an emergency plan as part of treatment
• Partner with others on the team, community 

We all have this general sense that emergencies are bad and that our clients might be vulnerable. We have a lot of constraints on our time, insurance being one. Today, we will discuss why this topic is essential, especially as technology gets ingrained in our daily lives.

We often assist with a client's disability. If a client has had a disability for an entire lifetime, you may think they have already developed a plan or have a backup. This is not always the case.

Other times, a client may have a new disability like a stroke, broken hip, or an issue requiring a wheelchair. They do not have a disability mindset. And many people with more recent disabilities do not see themselves as having a disability. I have a good friend who has a spinal cord injury, and she does not interact with other people with disabilities. When I ask her why, she says, "Oh, I don't know what I would say to those people." Individuals could also have new ambulation or balance issues necessitating a cane, walker, or wheelchair. They may be in and out of the hospital or now require oxygen. Often, so many things are going on that people are not paying attention to more essential things.

Some folks are unsure about resources and do not have a plan for emergencies. They may have limited caregiving, or their family has to work. They may not have any close neighbors or any financial resources.

The last issue is that many people assume that technology will always work or they will be able to get somebody's help via cell phone. But what if the cell phone service is out? Do they have a landline? What if the power is out? What if a person relies on specific assistive devices driven by technology? Are there backups for those devices?

I think that helping clients prepare for emergencies is an area that occupational therapy practitioners can play a role. This could be a significant practice area, especially if you have a business. You can market this part of your business. 

This is another area for clients preparing for discharge or running out of goals. All the team can work on emergency preparation. To devise a customized plan, you want to look at their network and community.

I will show you some pictures of disasters (more in the handout). Figure 1 shows the aftermath of a tornado.

Figure 1. A neighborhood after a tornado.

How might someone shelter from something like a tornado? Perhaps, a basement, tiny hall closet, bathroom, or storm shelter might suffice. What about those in a power wheelchair or those who do not move very well. Do they have access to a storm shelter? 

If you are prepared, nothing will ever happen due to "Murphy's Law." Folks with disabilities have an increased vulnerability, and we have an essential role in helping them.

Preparedness for Emergencies

• Increased vulnerability to disasters and other emergencies
  • 30% generally prepared
  • < 20% prepared for their specific disability
• Needing assistance from others most common barrier
• Often fatalistic- strong dependence on others and machines, distrust of government
• Self-efficacy and perceived threat motivate action

(Marceron & Rohrbeck, 2019; Finkelstein & Finkelstein, 2019)

Marceron & Rohrbeck (2019) asked clients about their preparedness. Only 30% thought they were generally prepared, like having a generator or a landline in case of loss of power or a neighbor's phone number. Less than 20% prepare for their specific disability. For example, how will they charge their power wheelchair without power, or how will they get to help?

Depending upon their particular disability, many need assistance from others. They may just be scraping by in their homes or on the edge. They may have to rely on other people for their care like family members or pay somebody to come here and there for two hours, three times a week. Caregivers perform bathing, dressing, clean-up, and quick snack prep, and then they are out of there. Caregivers may not have time, and the individuals may not have extra money to pay for help.

Another thing that I have seen in some folks is a fatalistic personality. "Things will happen, but somebody will take care of me." We must help people think through specific plans versus vague ideas.

Some studies have examined self-efficacy and whether they feel they have control over things with a perceived threat. If they do not think they have control, they may demonstrate less motivation to take action.

Emergencies at Home

• Smoke, carbon monoxide
• Fire
• Power outage
• Water off
• Weather
• Consider exits
• First responders
• Make a plan so not dependent on one caregiver

Let's start with emergencies at home, and you can see the list. You probably have had some emergencies at your home, like severe winter weather. Snow is a big issue, but people often have things set up. For example, their neighbor will snow plow, or someone will come to check on them. However, there are a lot of people on the fringe that do not have anyone.

One of the reasons I wanted to do this talk was that my client with ALS almost died in a house fire. He recently switched from a cane to a walker and used a manual chair. A fire started in the kitchen, and he got his manual chair too close to the door and could not pull it open. Thank goodness somebody was walking by and saw him waving in the window. He had not practiced with the new mobility device and got stuck.

If somebody uses a ventilator, is on oxygen, or has COVID, they may be unable to smell things like gas or smoke. Someone on a ventilator or continuous tube feeds is at high risk if the power goes out. What if the water is turned off for just a few hours?

Those using a wheelchair or a mobility device typically have a ramp but only at one exit. What if the fire is by the exit that has the only ramp? Some people will take cookies or other baked treats over to the fire station to let them know about their disability and ask if they will check on them in case of an emergency. This is a good backup plan if they rely on a specific caregiver or a neighbor. In an emergency, the caregiver or neighbor may not be available. 

Emergencies in the Community

• Away from home:
  • Flat tire/auto trouble
  • Bus/train/plane breakdowns, delays
  • Vehicle fire
  • Theft
  • Accidents

We have potentially less control over this, but there are certain areas where we may be able to help. For example, what if their wheelchair-accessible van breaks down? I had a client call me. She was coming in for a wheelchair valve, and her wheelchair van broke down about four miles from our office and was on the side of the road. Luckily, one of the wheelchair suppliers had an accessible vehicle, and we went and picked her up at the side of the road. By then, the police were there, but they may not have known what to do to help her, or it would have taken much longer.

Those with disabilities are often more vulnerable, especially if they travel alone. What do they do if there is a six-hour delay at the airport? A friend's mom got stuck in the corner of the airport, and they forgot about her for about four hours as she could not move the wheelchair herself. She was way off to the side where she could not access help.

I have another horrific story of a client who died in a vehicle fire as they were locked down in their restraint system, and emergency personnel could not get them out in time. If there is an emergency, can someone undo the straps or the easy lock? Will the ramp work? You hope you never have to think about these things, but this stuff happens. What about the theft of a custom wheelchair or a walker? 

Accidents in the community make travel from place to place more difficult. Figure 2 is an image of a plane that flew into an apartment complex and destroyed everybody's apartment.

Figure 2. An apartment building was destroyed by a plane.

A client can be displaced and may need to live in temporary lodging. It could be at a family member's home or a hotel that would not be set up for their needs.

Natural Disasters

• Hurricanes
• Floods
• Snow/ice
• Wildfires
• Tornadoes
• Earthquakes
• Volcanos

I live in North Carolina, where hurricanes, floods, snow, ice, wildfires, tornadoes, and earthquakes occur. There are no volcanoes, but we have all the rest. How will the person get out of their home, yard, and neighborhood? Do they have a road like this in Figure 3?

Figure 3. Crumbling road.

In this case, who will bring them the things they need, or can the caregivers get to them? If they need to shelter in place, we must ensure they are accessible. However, if there is a wildfire, they will have to evacuate. Near me, we had a factory that burned and created toxic fumes. Everybody within three miles had to evacuate the area.

Most of you are probably aware of the risks that can crop up in your community. For example, some parts of Charlotte are very likely to flood, and some tornadoes and hurricanes pass through. You probably already have a plan for managing that in your community.

We also need to think about less common things. Around us in North Carolina, we are starting to get more earthquakes. They are small and infrequent, but what if they are not? 

First Step

• Know the risks of the community
• Know the risks for clients

We must help clients know what could happen in their community and the risks. This includes discussing access to food, medicine, water, shelter, and power in an emergency.

Second Step

• Help clients and caregivers make a plan
• Make a part of treatment

The next step is helping them to make a plan and incorporate it as part of the treatment if pertinent. 

Plan

• Where to meet, how to contact family
• Talk to neighbors
• Plan emergency exits from every room, if elevator/ramp not accessible
• Make copies of important documents
• Plan for kids, pets, service animals
• Write down client's specific info/needs
• Keep instructions for medical equipment with it (if possible)

Part of our role is to help them make a plan. It could be as simple as discussing the importance of a second exit or purchasing a generator. Can we make this part of the treatment? Every case is different, but I think it is not the worst idea as we are already dealing with home and personal safety. In addition to safe transfers, can we add getting in and out of the house? Or a backup plan for power outages if they rely on technology to live independently.

We cannot plan for everything. However, we could tackle the more obvious case scenarios like getting out of the house safely, creating a second exit, having backup caregivers, how to reach out if cell towers are out, where to meet up in an emergency, etc. 

You also want to talk to all the neighbors. A woman had a seizure about a quarter of a mile back from my house, ran off the road, through the neighbor's house, into our trees, plowed on through about 50 miles an hour, and hit a big rock in my garden. She would have gone through the side of my house into my bedroom if the car had not stopped. In the aftermath, we met more neighbors than we had in the past. We want to encourage the client to talk to their neighbors to see if anybody is willing to be a backup if the caregiver cannot get to them. They may not have to be able to do anything physical, but they could stop by to check.

Again, what are the exit strategies? Is there any way to get a second option if they have one ramp? Can somebody who cannot walk down the steps go down on their bottom in an emergency? How they get out if there is a fire downstairs is another discussion. If they are in bed for the night and the caregiver is sleeping or has a medical emergency, how do they get help? There are so many potential emergencies that we can help the client figure out.

We can help people make copies of important documents and help them find a safe location. These include insurance documents/cards, medical records, passports, birth certificates, and driver's licenses.

You also need to ensure a plan for the person with a disability and everyone in the house. For example, they may have young kids, a mother with dementia, and a service dog. What is the plan for everybody in the household, not just the person with a particular disability, because they may also be caregivers for others.

It is also vital to have information about the person's specific needs if they do not communicate well or their communication device is not functioning. Perhaps the caregiver went to the ER, and the person is supposed to have tube feeding every three hours, but they cannot let anybody know. Or nobody knows what medications they are on. Support people other than primary caregivers need specific instructions about medical care and taking care of medical devices like a wheelchair.

• Create a "grab and go" bag- medical supplies, medical documents
• Create a "safe home"- fire extinguishers, water/gas/electricity shut off, detectors, exits
• Determine what is needed if asked to evacuate (in 1 week, 1 day, 1 hour, 1 minute)
  • Family, pets
  • Emergency kits, go-bag
    • Documents, ID
    • Phones, chargers
    • Medical supplies/documents

You can also help clients create an emergency bag. A grab-and-go bag is a small backpack or a bag with basic medical supplies, extra medications in there, and medical documents. This is the bag you want when you have minimal time to evacuate. This includes only the essentials, and many will always keep this with them.

You can also help people create a safer home in addition to accessible exits and preventing falls. Do they know where the water, gas, or electric shutoff are, and can they access them? Do their detectors or alarms have fresh batteries, and are they working correctly? Many fire stations will install free smoke detectors, fire extinguishers, and carbon monoxide detectors. And if you are somebody who cannot smell, they can also provide a gas detector. Those that are hard of hearing may need sound amplification devices or something that flashes or shakes the bed. Can clients physically manage a fire extinguisher, and do they know how to use it? For grease fires, are they aware of using flour or baking soda?

What do your clients need to grab if they had more time to plan, like an hour, a day, or a week? A hurricane, wildfire, or flooding is coming, and they need to determine what they will need. They may end up at a shelter that often does not take pets. What is their plan for their pets? What do they need to take in addition to their grab-and-go bag? A charger or backup battery? Extra medical supplies?

Third Step

• Help make emergency kit- basic supplies and specific supplies for the client
  • 72 hours of water (2L/person/day), food/formula, meds
  • Crank/battery-powered flashlight
  • Cash
  • First aid kit
  • Info on medications, equipment
  • Water/meds/food for pets/service animals
  • Other: hand sanitizer, trash bags, paper towels, basic tools, etc. 

The last significant step is to make a survival kit that lasts upwards of 72 hours. This would include two liters of water per average person per day. If somebody needs more water for formula or flushing a tube, they may need more. They also need food, formula, and medications for all residents and pets for 72 hours. This time frame assumes that somebody will be able to get to them in three days. A crank or battery-powered flashlight and radio are also great ideas. It is also essential to have cash on hand as ATMs may be down. A first aid kit, in addition to necessary medications, is critical to have on hand. Other basics include trash bags, paper towels, diapers, a hammer or a screwdriver, hand sanitizer, etc. So the emergency kit ends up being a pretty big thing. But that's assuming that you've got more time, right? That you've already got the water in kind of a spare closet. You can put meds and food aside and rotate that as things get close to expiration dates. 

Extra Steps With a Disability

• If PWC user, have MWC backup available
  • Know size/weight of w/c, if foldable and how
  • Show others how to operate PWC, put in neutral
  • Consider getting extra battery(s), keep on trickle charger
  • Pneumatic tires- keep patch kit, extra inner tube, can of sealant
• If you evacuate without chair, take seat cushion at least
• Call local emergency management services, fire station
• Call power and water companies
• Extra medications and supplies
• Extra food/water
• Alternative caregivers
• Backups to the backups

You will have to do some extra steps with people with specific disabilities. If they use a power wheelchair (PWC), having a manual wheelchair (MWC) is crucial. How will they evacuate in a boat if they use a power wheelchair for all mobility? How much does the wheelchair with the person in it weigh? Again, do they have any way to charge it or a backup battery? If they need to be pushed, does everybody know how to put the power wheelchair in neutral so it can be moved? Is there a way to pump up the pneumatic or air tires on the wheelchair? This may be crucial if there is a lot of glass around after a natural disaster like a tornado. If you cannot take the wheelchair, can you take the person's seat cushion? This may be imperative if someone ends up at a place like this in Figure 4.

Figure 4. Individual sheltering in a stadium.

The person may be used to sitting in a power wheelchair with tilt and recline for independent pressure relief. Now they are not in their equipment and sitting for long hours. They may not have a great setup for diaper and pad changing, which puts their skin at risk. For this reason, it may be vital to grab at least their pressure-relieving cushion.

It behooves each of us to find out what the community resources are in our area? What do our city, county, state, and national agencies do during emergencies? What would happen if you called the power company and told them there was a vulnerable person at this address? I believe they keep lists and would try to get that person's power turned on faster. This is the same thing with the water company.

As I indicated earlier, the family may want to call the fire station or local emergency management to inform them of a situation. For example, I have had people call the non-emergency number and tell them that if they get a call from this residence, it is not a prank. The person may not be able to speak.

A person with a particular disability might also be in big trouble if they do not have a specific type of food because they are allergic to everything. You might need to take some extra steps in these cases. 

Poor Levels of Preparedness - Why?

• Lack of disability-accessible information
• Cost to set up go-bag or kit
• Inability to stockpile consumables (meds, etc.)
• Relying on others to assist with prep/care
• Making and maintaining support networks

Why aren't people prepared? Many people do not think about it or do not have good information. And somebody who uses a scooter because their legs get tired is in a very different place than someone who uses a complex power wheelchair with ALS or a spinal cord injury. Every person's situation is unique. 

It can be the cost for some individuals. Setting aside 72 hours' worth of supplies is expensive. Not everybody has enough money to keep the lights on, much less stock up. Perhaps they can use a food bank or a close fire station. There may also be some organizations in the area that can help people prepare for emergencies.

They may not have a large enough space. They may have space constraints in their home or live in a halfway house or hotel. They may also be afraid that someone may steal their supplies.  

They often do not prepare because they rely on others for much of their care. I have had many people who are dependent on one person, and then they are stuck when this person is not available. Support networks can be fragile and constantly change, so they must be prepared for this.

Threat Vs. Efficacy

• Risk Protection Attitude (RPA) framework:
  • Interactive relationship between the client's threat and efficacy
  • Increase self-efficacy views risks or threats as challenges to overcome
  • Decrease self-efficacy views fatalistically- less likely to engage in risk-reducing behaviors
  • Individuals with physical disabilities often report lower self-efficacy already
• Unless client feels they can have an impact, differences in perceived threat have minimal (if any) effects.

(Marceron et al., 2019)

The Risk Protection Attitude (RPA) framework looks at the relationship between the threat level (how big the client thinks it is) and their self-efficacy. If they feel better about controlling the matter, they will consider the risks and threats as challenges to overcome. "If I'm going to lose power, I'd better get a generator going." They feel like they can manage these situations. Conversely, f they have low self-efficacy, they think that no matter what they do, nothing is going to work. They do not have power or control over this. "My caregiver won't do it, and I can't get anybody to help me." They often feel fatalistic and think, "Whatever happens is going to happen." They do not feel they can take some power and ownership over this.

Studies show that many folks, especially those with physical disabilities and in a wheelchair, already report lower self-efficacy. The idea of this framework is to help people understand that they can have an impact on some of these things that might happen. They may not be able to have everything done at the same time, but perhaps they could drive their power wheelchair a quarter mile down to the fire station and talk to them, or maybe they could meet a new neighbor. They could call the food bank and say, "Hey, I'm a little worried about this flood. I hear it's coming in a few days. Do you have any extra water?" Is there a way that we can help people gain some control or feel like they could make a difference?

Benefits of Preparing

• For clients- increased safety
• For community- create information sheet, educational materials
  • Education- for clients, public, practitioners
  • Marketing- ensure safety, care about clients
  • Advocacy- Local, state, national
  • Fundraising- provide generators, update/check smoke alarms, provide safety tools, build extra ramps
  • Infrastructure- especially local and state
• For practitioners- extra time for planning sessions with client/caregivers
  • Handouts, education

(Ching et al., 2021)

There are many benefits of preparing for emergencies. The first is increased safety for the individual. For the community, it can help pull people together and create more networking. Many neighbors would be perfectly willing to help, but they might not be right next door and not realize there is an issue.

If you have a business, why not have an emergency preparedness resource list or checklist to give clients?

We can also advocate locally or state-wide to ensure that there are resources in place that people will need. Do we need to think about some specific fundraising for these projects?

Unfortunately, I started researching this topic because somebody almost burned up in their house, but that should not be the impetus. My goal is that you will take some action after seeing this webinar in your neighborhood and community. Open the door so that people can ask questions. 

OT Practitioner Roles

• Current most common OTP roles (Filipino OTs):
  • Encourage connectedness and social interactions among survivors (recovery)
  • Provide supportive mental health services to survivors and their families (response)
  • Attend trainings in disaster response to be part of a response team (preparedness)
• Conclusions: OTPs able to perform various roles and responsibilities in the different phases of disasters; will need extra training. Especially:
  • Mental health services to people with special needs in disasters
  • Intentionally integrate disaster preparedness into rehabilitation
  • Advise community leaders
• Additional knowledge and skills in humanitarian action need to be integrated with clinical expertise to benefit government and non-government disaster management activities.

What are our roles? Ching et al.(2021) looked at OT practitioner roles with those of Filipino descent or living in those areas. They looked at three things: recovery, response, and preparedness. We can encourage social interactions among survivors, be part of a response team, provide mental health services, or attend training to prepare for a future response. Could you be a resource for a hospital, community leaders, a senator, or house representatives?

National and Local Preparedness

• Some national guidelines starting to have disability inclusion
• Need to enhance the capacity of households and individuals to take protective preparedness actions
• Establish alternative sites for training to encourage preparedness behaviors among people with disabilities (beyond work, community)
• FEMA and the CDC programs provide extensive guidance documents, recommendations, and requirements for state and local emergency planners that relate to integrating people with disabilities into planning, exercises, and trainings
  • https://www.cdc.gov/phpr/capability1.pdf
  • https://www.fema.gov/pdf/about/odic/fnss.guidance.pdf

FEMA and the CDC have some national guidelines. I have some guidance documents and recommendations if you want to think more about this advocacy piece. However, I think we need to help enhance the client's ability to prepare themselves and their family. People often think about emergency preparedness from their kids from school, or we hear about it at work. People that are homebound do not have good access to community resources.

How are they going to hear about the need for some of this? On an individual level, we can incorporate emergency planning into our treatment. We can also talk with local, state, and national personnel about integrating people with disabilities into the planning, exercise, and training. People with disabilities want to be included, but we can lead the charge as OT practitioners.

I will give you some resources in a couple of minutes that have some excellent checklists, but you could create your own. 

OT Practitioners' Responsibilities

• Identify vulnerable clients
• Assess the client
• Make a plan
• Prepare a kit
• Strengthen support networks
• Provide education
• Practice drills

Here are some of our responsibilities. We want to identify those who may be vulnerable and ask questions about safety preparation during our assessment. Help people make a plan, prepare a kit, and encourage people to widen their support networks. We want to provide education and practice emergency preparation drills. For example, a child with autism may need to practice skills. Or a person in a wheelchair may want to practice how long it takes to grab their emergency bay and evacuate their home. You would be surprised how fast a fire can go through a house.

Challenges for OTP

• Engaging the client and caregiver
• Tailoring information - accessible and relevant
• Time
• Not having tools to support or prompt inclusion
• More current focus on impairments experienced by the client
  • Less on emergency needs, overcoming barriers in the environment

We are going to need to tailor the information for each client. Even if we do not do emergency preparedness, we need to have a good sense of what is going on in their profile and their mobility challenges. What are their strengths and weaknesses? How can we help? Some folks feel there is no support in their local community. That may be true, and this might be a good capstone or student project. 

One project could be figuring out the community needs and resources. The second goal would be to get emergency preparedness in your community. We often focus on basic skills like getting out of bed, showering, or using the toilet. Our goals do not always include emergency preparation, but if they cannot get out of their house during a fire, this may be just as important.

Potential Solutions

• Targeted education and advocacy
  • Consider person and environment factors needed to increase preparedness.
  • Community and government resources
• In order to develop preparedness in others, OTPs need to have a sound understanding of the steps they can take to increase their own and their client's emergency preparedness.
• There appears to be a misalignment between the values of inclusion and enablement that providers hold and the tools available to enable emergency preparedness with clients in the community.

We need to focus on the person, environment, and contextual factors to increase preparedness among our clients, people, and staff members. Again, it may be great for a lunch and learn. "I'm worried about our clients as we work with some vulnerable folks."

If we do not understand our own needs, we will have difficulty helping others. Get a grab-and-go bag and make some copies of your documents. Remember, some woman almost drove through my house with her car. Emergencies can happen at any time. The more we understand our needs and community resources, the better we can help our clients.

We all support inclusion and accessibility, but what does inclusion look like during emergencies? Can we take that to the next level to help everyone, regardless of their ability?

Wrap Up

• Consider with every client
• Make part of education and training

I would encourage you to think about emergency preparation with every client. Older folks may have a cognitive disability and are also at risk. For example, if a caregiver is working with someone who has late-stage Alzheimer's and is confused, the caregiver may not be able to get them to move or evacuate.

You may need to think about the other end of the spectrum. There may be a fragile baby or young child at home. They need some particular things to survive once they go home.

Some clients may already be on the edge. They may not have a lot of resources. If they are in a mobile home and a tornado comes through, they are in trouble because there is no safe space.

Similar to sexual activity and intimate information that we may feel uncomfortable disseminating to clients, we must force ourselves because it is essential. The first step may be creating some handouts. Honestly, I think it is a fantastic marketing opportunity. For example, you could give out a laminated sheet that people could attach to their refrigerator.

Resources

• www.ready.gov/disability  
• https://www.ready.gov/individuals-access-functional-needs 
• www.nfpa.org/Public-Education
• www.getprepared.gc.ca
• https://www.fema.gov/disability
• https://www.redcross.org/get-help/how-to-prepare-for-emergencies/disaster-safety-for-people-with-disabilities.html

Ready.gov has some great emergency preparedness information. Red Cross and FEMA are other great organizations. Getprepared.gc.ca is a Canadian resource, but they have some terrific checklists. This information could be a nice lunch and learn for your department. Additionally, students always need a project, so perhaps they could pull together resources for your area.

Questions and Answers

Is there any equipment for those in wheelchairs who need to evacuate in an emergency?

There are "sling chairs" with handles you can purchase online for two people to carry somebody down the stairs. Firefighters have them, but I think having one is an excellent idea if they can afford it. There are transport chairs with larger wheels that you can bump down the stairs. You can bump a manual chair down the stairs, but it is not easy. Many families do that every time they enter or exit the house. You have to have strong enough people, and the manual or transport chair needs to be sturdy.

Is there a makeshift ramp for an emergency? What about two two-by-fours or a piece of plywood?

Some places sell ramps, which might be worth putting on somebody's Christmas or birthday list. I know it is not super exciting, but it would be worth it in an emergency. Organizations like firefighters, The Lions Club, The Rotary, churches, et cetera are looking for projects. They may be able to come up with a good solution.

Are any insurances covering backup power? 

I bet you could get a backup battery for a ventilator as it is life-sustaining, but I am not sure about a power wheelchair or a generator.

Someone mentioned that they live in South Florida, and their police station has a disability list. With every hurricane, they call to see if the needs are met.

How awesome. There may even be a special medical evacuation center. Why not have this information in a handout? If they plan, this stuff will not be an issue. 

References