Emergency Preparedness

Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their homes. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. We recognize how important it is that people living with ALS and their family members have the resources they need to make plans to protect themselves in the event of a disaster.

While we are not a disaster response organization nor direct care provider, we've assembled the following information and resources to help you and your family plan and prepare. Should you need non-emergency assistance, call or email us at 1-877-568-4347 or info@alsnc.org.

PLEASE print all relevant information you may need to access in case of an emergency so you are prepared in the event of lost power or Internet access. Click here for a more detailed preparedness guide.

Additional Resources: Emergency and Medical Information, Communication Board with Pictures, Eye Gaze Board.

FIRST:

Contact your local fire department and other first responder organizations and report to them that a person living with ALS resides in the home. Make sure they understand any specific medical needs (e.g. tracheostomy, ventilator-dependent, feeding tube, mobility issues etc.) In the event of an emergency or disaster, the 911 system would have a “disability notice” through the Computer Aided Dispatch (CAD) that would alert responders that a person living at that residence needs additional attention immediately. The address also appears on EMS computers during 911 calls, serving a double purpose.

If you rely on a ventilator, cough assist device or other necessary medical equipment that requires electricity or battery back-up, you may want to have a back-up generator and adequate fuel supply for power outages. Backup/portable batteries should be charged and tested. Make sure you are comfortable using those batteries in the case of a loss of power. Understand that if you do lose power, your battery is intended to give you time to get to a safe place that has power.

Contact your local electric service operator to ‘register’ the household as having an occupant requiring electricity for medical devices. This may include providing documentation of disability. This must be done ahead of time and not during a disaster. If you have not yet registered, please try to do so as soon as possible.

Find local North Carolina County Emergency Management Offices here: www.ncdps.gov/emergency-management/em-community/directories/counties

Emergency shelters may be opened should a hurricane approach North Carolina. Before heading to a public shelter, first consider staying with family and friends or in a hotel out of the evacuated area. If those options are unavailable, the American Red Cross will provide a safe place to stay when you have no other place to go. Cots and blankets will only be provided in the public shelter after hurricane conditions subside. Although food may be provided, specialty items for individuals on restricted diets may not be available. If you plan to evacuate to a shelter, you will want to carry the supplies listed in your Disaster Supplies Kit, PLUS:

  • Blankets, sleeping bags, pillows, cots, face masks & hand sanitizer
  • Special foods, if you are on a restricted diet.

(Please Note: ‘Regular’ shelters may not have the electrical service or additional staff required for persons using power wheel chairs or other medical equipment requiring electricity.)

SECOND:
Review and keep the important information below handy in the event of an emergency or disaster.

Important Links:

Important Phone Numbers:

    • Emergency: 911
    • FEMA: 800-621-3362
    • NC DOT Statewide Road Closures: 511
    • Disaster Distress Helpline: 800-985-5990

Disaster Distress Helpline is a resource available 24 hours-a-day, seven-days-a-week that provides immediate services to anyone who may need crisis counseling after experiencing a natural or man-made disaster or tragedy.

American Red Cross:

Red Cross - Eastern North Carolina Region

  • Triangle Area Chapter - 919-231-1602 - Serving Chatham, Franklin, Johnston, Lee, Wake and Warren Counties
  • Cape Fear Chapter - 910-762-2683 - Serving Brunswick, Carteret, Columbus, Craven, Duplin, Greene, Jones, Lenoir, New Hanover, Onslow, Pamlico, Pender and Wayne Counties.
  • Central North Carolina Chapter 919-489-6541 - Serving Durham, Granville, Orange, Person and Vance Counties
  • Sandhills Chapter - 910-867-8151 - Serving Bladen, Cumberland, Harnett, Hoke, Moore, Richmond, Robeson, Sampson, and Scotland Counties
  • Northeastern North Carolina Chapter - 252-355-3800 - Serving Beaufort, Bertie, Camden, Chowan, Currituck, Dare, Edgecombe, Gates, Halifax, Hertford, Hyde, Martin, Nash, Northampton, Pasquotank, Perquimans, Pitt, Tyrrell, Washington and Wilson Counties

Red Cross - Western North Carolina Region

  • Charlotte Metro Chapter - 704-376-1661 - Serving Mecklenburg and Iredell Counties
  • Southern Piedmont Chapter - 704-283-7402 - Serving Anson, Cabarrus, Montgomery, Rowan, Stanly and Union Counties.
  • Piedmont Triad Chapter - 336-333-2111 - Serving Alamance, Caswell, Davidson, Davie, Forsyth, Guilford, Randolph, Rockingham, Stokes, Surry and Yadkin Counties
  • Sandhills Chapter - 910-867-8151 - Serving Bladen, Cumberland, Harnett, Hoke, Moore, Richmond, Robeson, Sampson, and Scotland Counties
  • Blue Ridge Piedmont Chapter - 828-322-4151 - Serving Alleghany, Alexander, Ashe, Avery, Burke, Caldwell, Catawba, Cleveland, Gaston, Lincoln, Watauga and Wilkes Counties
  • Asheville Mountain Area Chapter - 828-258-3888 - Serving Buncombe, Cherokee, Clay, Graham, Haywood, Henderson, Jackson, Macon, Madison, McDowell, Mitchell, Polk, Rutherford, Swain, Transylvania and Yancey Counties

Apps:

Additional Resources:

Prepare. Plan. Stay Informed.
By Alisa Brownlee, ATP

Be prepared. It takes work, but it is worth it! The more you do, the more confident you will be that you can protect yourself when the time comes.

Make a plan. The plan should include:

  1. Know what kinds of disasters (especially weather/natural disasters) could happen in your area and consider what your environment might look like after one occurs. Sign up for alerts from FEMA or local weather sources. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number. ReadyNC
  2. *Complete a personal assessment and personal support network of family, friends, relatives, neighbors, roommates and co-workers who could assist you at a moment's notice. Keep this list handy at all times. Make sure your personal support network knows your plan (whether you plan to evacuate, where you will go or if you will stay at home).
  3. *Make an emergency information list so others will know who to call if they find you unconscious, unable to speak, or if they need to help you evacuate quickly.
  4. *Compile a medical information list that contains the names and numbers of your doctors, your medications, dosage instructions and any existing conditions. Make note of your adaptive equipment, allergies and any communication difficulties you may have.
  5. Keep at least a seven-day supply of medications on hand. Ask your doctor or pharmacist what you should do if you cannot immediately get more.
  6. Identify evacuation routes and safe places to go during a disaster. Remember that in the event of a natural disaster you may be under mandatory evacuation. Should this occur and you don’t have accessible transportation, call your local police department and inform them of your situation.
  7. Keep a disaster supply kit, also known as a “go bag,” in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, adaptive equipment and batteries.
  8. *Show others how to operate your wheelchair or other assistive devices.
  9. Advocate for yourself. Tell someone the best way to safely guide or move you and your adaptive equipment. Give short, clear and specific ways (verbally or in writing). Keep in mind that during an emergency, you may need to explain to first responders and emergency officials that you need to evacuate and shelter with your family, service animal, caregiver or personal assistance provider so they can provide the support you need to maintain your health, safety and independence.
  10. If you cannot verbally communicate, make sure you always have a Rapid Access Communication System in place. This could include a letter board, laser pointer, or other communication system that does not rely on electricity. You can find more information at www.patientprovidercommunication.org.
  11. If you have a service provider coming into the home (home health, palliative or hospice care, respiratory therapy company etc.), talk to them about their emergency plans.

*See Medical Information Packet, Key Medical Information Card, Printable Eye Gaze Board and Medical Information: http://www.alsa.org/als-care/resources/publications-videos/medical-information-packet/

Resources for Living with ALS