Emergency Preparedness After SCI: Planning for Disasters and Power Outages

Natural disasters and extended power outages carry outsized risk when you live with a spinal cord injury. Roads can become impassable, caregivers may be unable to reach you, and a loss of electricity can shut down ventilators, power wheelchairs, and other essential equipment. A plan made in advance can be the difference between staying safe at home or in an accessible shelter and facing a life-threatening crisis.

You cannot control the weather or the timing of an emergency, but you can control how prepared you and your support network are. The time to build these plans is now, while the lights are on and the roads are clear (per Reeve).

🚨 Red Flags — When to Seek Emergency Care

During or immediately after a disaster or power outage, call 911 or go to the nearest emergency department if:

• You depend on a ventilator or BiPAP and power and backup systems have failed or are about to fail and you cannot maintain breathing. (For how to respond to a ventilator emergency itself — alarms, a mucus plug, a tube coming out — see the long-term ventilation guide.)
• You have signs of autonomic dysreflexia — a severe pounding headache, a blood-pressure spike, flushing, sweating above your injury level, blurred vision — and the chaos, evacuation, or lack of supplies keeps you from finding and removing the trigger.
• You cannot empty your bladder or bowel for many hours and develop worsening abdominal pain, severe spasticity, or AD symptoms you cannot resolve.
• You have a new or worsening pressure injury, open wound, or suspected infection and no access to your usual wound supplies or to medical help.
• You or someone in your household shows signs of carbon monoxide poisoning — headache, dizziness, nausea — from a generator or stove used indoors, or you cannot safely remain in your environment.

Tell first responders immediately: “I have a spinal cord injury at [level] and I am [ventilator-dependent / at risk for autonomic dysreflexia / unable to transfer independently].” Keep your Reeve wallet cards — which carry vital information on AD, deep vein thrombosis, and sepsis — and a one-page medical summary with your go bag at all times (per Reeve).

Understanding the Risk

Two things make disasters different when you live with SCI. First, the routines and infrastructure you rely on — electricity, refrigeration, predictable roads, a caregiver who arrives on schedule — are exactly what a disaster disrupts (per Reeve). Second, the margin for improvising is thin: a power outage that is an inconvenience for a neighbor can be life-threatening for a ventilator user, and an evacuation that is stressful for others can be impossible without an accessible vehicle lined up in advance.

The work of preparedness is therefore mostly done in advance — mapping what you depend on, building redundancy into each piece, and rehearsing the hard parts with real people before a storm is on the radar.

Assess Your Real Daily Needs

Keep a detailed journal for one week, tracking every supply, resource, and routine that is critical to your daily function (per Reeve). Capture the obvious and the easy-to-forget:

• Bladder and bowel program — supplies, timing, and who can help
• Skin checks and pressure-relief schedule
• Medications, including any that need refrigeration
• Respiratory equipment and its backup-power needs
• Transfers and mobility — how you get out of bed, on and off the toilet, into a vehicle
• Temperature regulation and any heating or cooling you depend on
• Communication devices and how you charge them

Then use the list to build contingency plans for the worst-case version of each item. If your caregiver cannot reach you for 48 to 72 hours, who handles each task? Plan for any secondary conditions too — for example, someone managing diabetes needs to pack insulin, a cooling pack, a glucose monitor, and low-blood-sugar supplies (per Reeve).

The self-care routines themselves are covered in their own guides — see bladder management, neurogenic bowel, and pressure injuries — so this guide focuses on keeping those routines running when a disaster interrupts them.

Pack a Go Bag (Grab-and-Go for Evacuation)

Assume there will be no time to waste when disaster strikes. A bag packed and ready helps you reach safety faster and stay healthy in unpredictable circumstances (per Reeve).

• Two-week supply of all essential medications, plus catheter and bowel supplies, suppositories, lubricant, gloves, and baby wipes
• A change of clothes, including weather-appropriate layers, and a blanket
• Adaptive utensils and any adaptive equipment you cannot function without (slide board, specific cushion, reacher)
• A wheelchair repair tool kit and spare parts
• A fully charged cell phone charger and power banks for your phone and communication devices
• A flashlight, a first aid kit, and a whistle to signal for help
• Cash, including small bills, and a local or regional map
• Reeve wallet cards (AD, DVT, sepsis) and a one-page medical summary
• Copies of prescriptions and key medical records on a waterproof thumb drive

Keep a second kit anywhere you spend significant time — your car or workplace. Label your wheelchair and other durable medical equipment with your name, contact information, and operating instructions, using index cards and clear packing tape (per Reeve).

Organize Key Documents

Gather important records before an emergency, store them in a waterproof bag, and scan copies onto a thumb drive on your key chain (per Reeve). Keep this with your go bag:

• Social Security card; insurance, Medicaid, and Medicare cards
• Medical records and current prescriptions
• Instructions, serial numbers, and model numbers for your medical equipment
• Bank records and a living will, if you have one
• Written contact information for family, doctors, pharmacists, and your support network, in case your phone’s address book is inaccessible

Build a Home Emergency Kit (Shelter-in-Place for One Week)

It is not always safe to leave home, so keep a kit that lets you and your household survive on your own for at least a week (per Reeve):

• Water — one gallon per person per day — and non-perishable food
• A one-week supply of essential medications and condition-management supplies
• Personal health items: gloves, extra catheter supplies, suppositories, lubricant, baby wipes
• A manual can opener, matches, and a flashlight for every household member
• Extra batteries and portable power banks
• A first aid kit and a wrench to turn off utilities if instructed
• Face masks, plastic sheeting, and duct tape in case of a shelter-in-place order
• Garbage bags, a whistle, and a battery-powered or hand-crank NOAA Weather Radio
• A one-week supply of food and water for a pet or service animal

Prepare for Power Outages (Critical for Ventilator and Power Wheelchair Users)

Wind, rain, and falling branches can knock out power for hours or days. If you depend on a ventilator, a power wheelchair, or temperature control, plan for an outage well ahead of time (per Reeve).

• Identify every electricity-dependent piece of medical equipment you use frequently.
• Register with your local utility company as a ventilator or power-wheelchair user — this list is often used to prioritize restoration of service (per Reeve).
• Consult your equipment supplier about backup power to keep at home, such as rechargeable batteries or a generator.
• Test how long your batteries actually last by running a wheelchair or ventilator on battery alone until it stops; real-world charge can range from about 30 minutes to nine hours (per Reeve).
• Learn to operate any backup generator before you need it. Never run a generator indoors or in an attached garage — it causes carbon monoxide poisoning, one of the leading causes of death after storms (per Reeve).
• Ask your emergency-planning officials about priority shelter placement or transport to an EMS facility for people who need electricity for durable medical equipment, and identify accessible local sites with reliable power — police and fire stations, hospitals, hotels — where you could charge equipment in an emergency (per Reeve).
• If you refrigerate medication, ask your doctor how long it stays stable at room temperature. During an outage, a closed refrigerator keeps items cold for about four hours (per Reeve).

Backup batteries and generators can be expensive, but funding may exist in your community — contact utility providers, independent living centers, and disability non-profits to ask what programs are available (per Reeve).

Develop a Respiratory Response

If you depend on a ventilator, oxygen, a nebulizer, or CPAP/BiPAP, anticipate how a disaster could put your breathing at risk and assemble the right supplies in advance (per Reeve).

• Build an emergency supply kit for home and for any place you spend significant time. Depending on your equipment, that may include extension cords, a backup power supply, extra batteries and a charger, circuit tubing, distilled water, multiple masks or cannulas, and a 30-day supply of any breathing medicine (per Reeve).
• Keep a manual resuscitation bag available, and make sure your caregivers know how to use it.
• Label all respiratory equipment and attach copies of its instruction guides in plastic bags (per Reeve).
• Ask your respiratory team how best to continue care during and right after a disaster, and decide in advance where you will go if you need hospital care (per Reeve).
• Store your provider’s contact numbers in your phone and write them out with your emergency kit.

This guide covers the planning side of respiratory backup. For the emergency operation of a ventilator or tracheostomy — silencing alarms, clearing a mucus plug, responding to decannulation, and hand-bagging — and for the full picture of building power redundancy around a home vent, see the long-term ventilation guide.

Establish a Support Network

A designated network of friends, family, and neighbors can be critical to staying safe. Ask at least three people who live close by to check on you during an emergency and offer help (per Reeve). Do not rely on “someone will probably come.”

• Program everyone’s contact information into your phone and print a hard copy in case phone service is disrupted.
• Give each person your emergency contacts (doctors, pharmacists, out-of-town family who can coordinate from outside the storm zone) and a copy of your daily care needs.
• Share a house key with at least one member, or install a keypad lock and give out the code.
• Make sure members know your home’s layout, including where your go bag and supplies live.
• Demonstrate and have them practice operating any critical equipment — wheelchair, ventilator, transfer board, evacuation chair — and transfers, while the weather is calm.
• Show them where and how to turn off gas, water, and electricity, but only if they suspect a damaged or leaking line or officials instruct it.
• Arrange for at least one person to come to your home automatically if cell service goes down and they have not heard from you within a pre-agreed time (per Reeve).

Plan for Caregiving Interruptions

Roads close, caregivers get stranded, and agencies are overwhelmed. Decide now how you will manage without your usual help — for bladder, bowel, transfers, and medications — if no one can reach you for 48 to 72 hours (per Reeve).

• Have a plan for support-network members to step in, whether by giving hands-on help or by getting you to family in a safer location.
• Keep a written care plan — injury level, AD triggers, bowel and bladder program, skin routine, medications, transfer technique — taped to your refrigerator where EMS personnel will find it.
• If you may need urgent help during an evacuation, place a visible “RESCUE” label on the front of your home; the labels are designed to speed emergency response and are available from the Shepherd Center (per Reeve).
• When a storm threatens and caregiving looks uncertain, let the weather guide you — make plans to stay with family or friends before the situation becomes dangerous.
• If you work with an agency, ask in advance whether they can provide replacement staff from outside the affected region in the days and weeks afterward.
• In a presidentially declared disaster, you can request personal assistant services at an emergency shelter: the shelter manager arranges them through local and state officials, and they can cover basic personal care as well as more complex needs including changing wound dressings, catheterization, and respiratory care (per Reeve).

Create an Evacuation Plan

A packed go bag is the first step in any successful evacuation; the next is anticipating the obstacles a chaotic situation will throw at you (per Reeve).

When to leave. If an evacuation order is given, do not delay. It is tempting to ride out a storm in a home set up around your function rather than face an unfamiliar setting — but the risk to your health and life is too great. Don’t even wait for an official order if you believe your life is at risk; err on the side of caution (per Reeve).

How you will go. Always keep your mobility device within reach. If you live or work in a multi-story building, make an evacuation plan with the building manager, store an evacuation chair in an accessible spot near the stairs, designate helpers, and practice using it down the stairs ahead of time. If you do not drive, arrange a ride in advance with someone whose vehicle can carry you and your chair, since transit and taxis are often suspended. If you do drive, keep the gas tank at least half full during high-risk seasons to avoid long station lines (per Reeve).

Where you will go. Identify accessible shelters, hotels, or family and friends outside the risk zone before a storm, and visit ahead of time to confirm they are accessible. Program FEMA’s shelter-locating text service — text SHELTER and your ZIP code to 43362 — into your phone, and learn the official evacuation routes plus backup roads in case of closures (per Reeve).

Let people know. When you evacuate, alert your support network and family, and call your local police and fire departments — especially if you are on a priority-response list. Letting others know you are safe frees emergency personnel to focus on those who urgently need help (per Reeve).

Plan for Your Pet or Service Animal

Emergency shelters must admit service animals, but they may not accept pets (per Reeve). Identify pet-friendly, accessible hotels or family outside the storm radius ahead of time. Pack a separate kit for your animal:

• A two-week supply of food and water in an airtight container
• A bowl, leash, blankets, and plastic clean-up bags
• A week’s supply of any medication and a pet first aid kit
• Vaccination and license records, vet contact information, and a recent photo in case you are separated, all in a waterproof bag

Stay Informed and Connected

• Find out how your community delivers emergency alerts and sign up for local notifications — many cities use automated calls, texts, and emails (per Reeve).
• Own a NOAA Weather Radio with a “Public Alert” logo and keep fresh batteries in it.
• Download the FEMA app and bookmark the National Weather Service and your state emergency-management site.
• Program your local emergency-management number and 1-800-RED-CROSS into your phone; Red Cross shelters are accessible, and you can request specific assistive equipment or supplies on site.
• During a storm, text rather than call when you can — texting uses fewer network resources; if you must call and hit a busy signal, hang up and wait 10 seconds before redialing. Conserve battery by dimming the screen and using airplane mode (per Reeve).

Advocate for Better Local Planning

Your lived experience makes community plans better for everyone. Contact your local emergency-management office and ask (per Reeve):

• Whether they have a designated disability coordinator or access-and-functional-needs planner — and if not, lobby for the role.
• Whether they maintain a voluntary, confidential registry of residents who need priority evacuation, sheltering, wellness checks, or power restoration.
• Whether first responders and shelter staff are trained in wheelchair transfers, AD recognition, and basic assistance for people with disabilities.

Offer to join planning meetings, an emergency-preparedness committee, or first-responder training. Having a person with paralysis at the table helps ensure evacuation plans actually work for people with disabilities.

After a Disaster

• If you evacuated, do not return home until authorities say it is safe. Arrive in daylight so you can assess damage and avoid hazards, especially if the power is out (per Reeve).
• If you hear shifting or strange noises, or smell gas, leave immediately and call the fire department or utility company before re-entering.
• While power is out, spend your days in heated or air-conditioned shelters and never run generators or camp stoves indoors.
• Document damage with photos before cleaning up, and keep a running list of losses with replacement costs — you will need both for insurance and FEMA claims (per Reeve).
• People without adequate insurance can apply for FEMA disaster assistance, which can cover temporary housing, damaged wheelchairs and other durable medical equipment, medications, and daily-living needs caused by interrupted caregiving. Answer YES to every disability-related question on the form so your needs are recorded (per Reeve).

What Many People Find Helpful

People who have lived through major disasters with SCI tend to say the same things:

“Start small. Pick one thing on this list each week until everything feels manageable.”

“The go bag is useless if it is sitting in a closet you cannot reach from your bed. Keep critical items next to you.”

“Practice the scary parts with your support people while the weather is nice. The first time you do a transfer in the dark during a storm should not be the first time you have ever done it with that person.”

“Label everything. First responders are not mind readers, and you may not be able to speak for yourself.”

“Plan during a blue-sky moment. Don’t wait till it’s cold and the wind is blowing.” And when the time comes: “Leave early. The people who get in trouble are almost always the ones who waited to see if it would really be that bad.”

Evidence & Sources

Synthesized from the Christopher & Dana Reeve Foundation Emergency Preparedness for People with Paralysis booklet (First Edition, 2023; retrieved 2026-06-24). See RESEARCH-SOURCES.md for complete provenance and additional context on disaster preparedness for people with disabilities. Primary practical guidance on go bags, power-outage and respiratory planning, support networks, caregiving interruptions, and evacuation draws on the Reeve booklet; the ventilator and tracheostomy emergency-operation drill, and full home-vent power redundancy, live in the companion long-term ventilation guide.

Printable One-Pager Notes

• Target printed length: 1100–1400 words. This guide runs long by design (definitive completeness over print budget); the renderer/print pass may paginate. Keep the Red Flags block and the core before-a-disaster checklists (Go Bag, Power Outage, Support Network, Evacuation) in the upper half.
• Emphasize that planning is an act of self-advocacy that protects both you and the people who care about you.
• The markdown itself is the source of truth for print content; layout and typography live in the future site renderer (SCI-003).