Emergency Preparedness After SCI: Planning for Disasters and Power Outages

Disasters and long power outages hit harder when you live with a spinal cord injury. Roads close, caregivers get stranded, and a blackout can stop a ventilator or power wheelchair. A plan made ahead of time can keep a bad day from turning deadly. Build it now, while the lights are on and the roads are clear (per the Reeve Foundation).

🚨 Red Flags — When to Seek Emergency Care

During or right after a disaster or outage, call 911 or get to an emergency department if:

• You use a ventilator or BiPAP, power and backup power have failed or are failing, and you cannot keep your breathing supported. (For a ventilator emergency itself — alarms, a mucus plug, a tube coming out — see the long-term ventilation guide.)
• You have signs of autonomic dysreflexia (AD) — a pounding headache, a blood-pressure spike, flushing or sweating above your injury level — and the emergency keeps you from finding and removing the trigger.
• You cannot empty your bladder or bowel for many hours and develop growing belly pain, severe spasms, or AD signs you cannot settle.
• You have a new or worsening pressure injury, open wound, or possible infection and no supplies or medical help.
• Anyone in your home has signs of carbon monoxide poisoning — headache, dizziness, nausea — from a generator or stove used indoors.

Tell first responders right away: “I have a spinal cord injury at [level] and I am [ventilator-dependent / at risk for autonomic dysreflexia / unable to transfer on my own].” Keep your Reeve wallet cards — vital facts on AD, blood clots, and sepsis — and a one-page medical summary with your go bag (per Reeve).

Understanding the Risk

Disasters disrupt exactly what you depend on: electricity, refrigeration, open roads, a caregiver who arrives on time (per Reeve). The margin for improvising is thin. An outage that annoys a neighbor can be life-threatening for a ventilator user. So the work happens in advance: map what you depend on, build a backup for each piece, and practice the hard parts with real people.

Start with a one-week journal of every supply, routine, and helper your day depends on (per Reeve): bladder and bowel program, skin checks and pressure relief, medications (note any that need a fridge), breathing equipment and its power needs, transfers, temperature control, and device charging. Then plan the worst case for each item. Include any other condition — diabetes, for example, means insulin, a cooling pack, a glucose monitor, and low-blood-sugar supplies.

The care routines themselves live in their own guides — see bladder management, neurogenic bowel, and pressure injuries. This guide is about keeping them running when disaster gets in the way.

Practical Checklists

Pack a go bag (grab-and-go)

Assume there will be no time to pack when disaster strikes (per Reeve). Keep the bag where you can reach it from your bed:

• Two-week supply of all essential medications
• Catheter and bowel supplies, suppositories, lubricant, gloves, and wipes
• A change of clothes, weather layers, and a blanket
• Adaptive utensils and any gear you cannot function without (slide board, cushion, reacher)
• Wheelchair repair kit and spare parts
• Phone charger and power banks
• Flashlight, first aid kit, and a whistle to signal for help
• Cash in small bills and a local map
• Reeve wallet cards and a one-page medical summary
• Prescriptions and key records on a waterproof thumb drive

Keep a second kit in your car or at work. Label your wheelchair and equipment with your name, contact information, and operating instructions.

Organize key documents

Store these in a waterproof bag with your go bag, and scan copies onto a thumb drive on your key chain (per Reeve): Social Security card; insurance, Medicaid, and Medicare cards; medical records and prescriptions; instructions and serial numbers for your equipment; bank records and living will; and written contacts for family, doctors, pharmacists, and your network.

Build a home kit (shelter in place for one week)

It is not always safe to leave home. Stock enough for your household to last a week on its own (per Reeve):

• Water — one gallon per person per day — and non-perishable food
• One-week supply of medications and care supplies
• A manual can opener, matches, and a flashlight for each person
• Extra batteries, power banks, a first aid kit, and a wrench to shut off utilities
• Face masks, plastic sheeting, and duct tape for a shelter-in-place order
• Garbage bags, a whistle, and a battery or hand-crank NOAA Weather Radio
• One week of food and water for your pet or service animal

Plan for power outages

Critical if you depend on a ventilator, a power wheelchair, or temperature control (per Reeve):

• List every piece of medical equipment that needs electricity.
• Register with your utility company as a ventilator or power-wheelchair user. This list is often used to restore service first.
• Ask your equipment supplier about backup power to keep at home, such as rechargeable batteries or a generator.
• Test how long your batteries really last: run the wheelchair or ventilator on battery until it stops. Real charge can range from about 30 minutes to nine hours (per Reeve).
• Learn to run a backup generator before you need it. Never run a generator indoors or in an attached garage. It causes carbon monoxide poisoning — a leading cause of death after storms.
• Ask emergency officials about priority shelter or transport for people whose equipment needs power. Find nearby accessible sites with reliable power — fire stations, hospitals, hotels — where you could charge up.
• If a medication needs a fridge, ask your doctor how long it keeps at room temperature. In an outage, a closed fridge stays cold for about four hours (per Reeve).
• Backup power is costly. Ask utility providers, independent living centers, and disability non-profits about funding programs.

Build a respiratory backup plan

If you use a ventilator, oxygen, a nebulizer, or CPAP/BiPAP (per Reeve):

• Build a supply kit for home and anywhere you spend real time. Depending on your equipment: extension cords, a backup power supply, extra batteries and charger, circuit tubing, distilled water, spare masks or cannulas, and a 30-day supply of breathing medicine.
• Keep a manual resuscitation bag on hand, and make sure caregivers know how to use it.
• Label all equipment and attach its instruction guides in plastic bags.
• Ask your respiratory team how to continue care during and after a disaster, and pick your hospital ahead of time. Keep provider numbers in your phone and on paper.

This is the planning side only. For emergency operation of a ventilator or trach — alarms, a mucus plug, a tube coming out, hand-bagging — see the long-term ventilation guide.

Establish a support network

Ask at least three people who live close by to check on you in an emergency (per Reeve). Do not count on “someone will probably come.”

• Save everyone’s numbers in your phone and print a paper copy.
• Give each person your emergency contacts and a copy of your care needs.
• Share a house key with at least one member, or use a keypad lock and share the code.
• Show them your home layout and where the go bag lives.
• Have them practice your transfers and your equipment — wheelchair, ventilator, evacuation chair — while the weather is calm.
• Show them how to shut off gas, water, and power — but only if a line seems damaged or officials instruct it.
• Agree that one person comes over automatically if cell service is down and they have not heard from you.

Plan for caregiving interruptions

Roads close and agencies get swamped. Decide now how bladder, bowel, transfers, and medications get handled if no one can reach you for days (per Reeve).

• Plan for network members to step in, or to get you to family somewhere safer.
• Tape a written care plan to your refrigerator — injury level, AD triggers, bowel and bladder program, skin routine, medications, transfer technique — where EMS will find it.
• If you may need urgent help in an evacuation, put a visible “RESCUE” label on the front of your home. The labels speed emergency response and come from the Shepherd Center.
• Let the weather guide you: if a storm may cut off your care, go stay with family or friends before it gets dangerous.
• If you use an agency, ask now whether they can send replacement staff from outside the region.
• 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. They cover basic personal care and more complex needs — wound dressings, catheterization, and respiratory care (per Reeve).

Create an evacuation plan

• Leave early. If an evacuation order comes, do not delay. Riding out a storm in a home built around your function is tempting, but the risk is too great. If you believe your life is at risk, don’t wait for an official order (per Reeve).
• Always keep your mobility device within reach.
• In a multi-story building, plan with the building manager. Store an evacuation chair near the stairs, name your helpers, and practice ahead of time.
• If you do not drive, arrange a ride in advance with someone whose vehicle fits you and your chair — transit and taxis often stop running. If you drive, keep the gas tank at least half full (per Reeve).
• Pick accessible shelters, hotels, or family outside the risk zone before a storm, and visit to confirm access. Save FEMA’s shelter finder: text SHELTER and your ZIP code to 43362 (per Reeve). Learn the official routes plus backup roads.
• When you leave, tell your support network and call local police and fire — especially if you are on a priority-response list.

Plan for your pet or service animal

Shelters must admit service animals but may refuse pets (per Reeve). Find pet-friendly, accessible hotels or family outside the storm radius ahead of time. Pack an animal kit: two weeks of food and water in an airtight container; bowl, leash, blankets, and clean-up bags; a week of any medication; and vaccination records, vet contact, and a recent photo in a waterproof bag.

Stay informed and connected

• Sign up for local emergency alerts — many cities send automated calls, texts, and emails (per Reeve).
• Keep a NOAA Weather Radio with a “Public Alert” logo and fresh batteries.
• Download the FEMA app. Save your local emergency-management number and 1-800-RED-CROSS; Red Cross shelters are accessible, and you can request assistive equipment on site.
• In a storm, text rather than call — it uses less network. If a call hits a busy signal, hang up and wait 10 seconds. Save battery with a dim screen and airplane mode (per Reeve).

Speak up for better local planning

Ask your emergency-management office three things (per Reeve): Is there a disability coordinator? Is there a voluntary, confidential registry of residents who need priority evacuation, wellness checks, or power restoration? Are first responders and shelter staff trained in wheelchair transfers, AD, and basic assistance? Offer to join planning meetings — a person with paralysis at the table helps evacuation plans actually work.

After a disaster

• If you evacuated, do not return until authorities say it is safe. Arrive in daylight so you can spot damage and hazards (per Reeve).
• If you hear shifting or strange noises, or smell gas, leave at once and call the fire department or utility company.
• While power is out, spend your days in heated or cooled shelters, and never run generators or camp stoves indoors.
• Photograph damage before cleanup and keep a running list of losses with replacement costs — you need both for insurance and FEMA claims.
• If insurance falls short, apply for FEMA disaster assistance. It can cover temporary housing, damaged wheelchairs and other medical equipment, medications, and daily-living needs caused by interrupted caregiving. Answer YES to every disability-related question on the form (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 it all feels manageable.”

“The go bag is useless in a closet you can’t reach from your bed. Keep critical items next to you.”

“Practice the scary parts while the weather is nice. A transfer in the dark during a storm should not be a first attempt.”

“Plan during a blue-sky moment — and when the time comes, leave early. The people who get in trouble 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), with context from the SCIRE Community emergency and hospital care handout. See RESEARCH-SOURCES.md for complete provenance. All practical checklists draw 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. 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).