ALS Ice Bucket Challenge Progress


Emergency and Disaster Preparedness While Living With ALS

Federal agencies and members of Congress are vital resources to look to if a natural disaster or terrorist act impacts your area.  This website not only provides tips on how you can prepare for emergency situations, but also includes emergency contact information for organizations who provide disaster relief assistance to those living in impacted areas. 

Although the hurricanes and flooding that have affected the U.S. in recent years have been the driving force behind the creation of this update, the information included below can also be used to prepare for any type of disaster, including floods, fires, tornados, earthquakes or acts of terrorism.

Practice Makes Perfect
Louisiana Guide to Supports & Services for Individuals with Disabilities

Which Disasters Impact Your Community?

Emergency Assistance in Your Community

There are several different organizations, both public and private, that provide disaster relief assistance to people living in affected areas.  The organizations listed below are a few of the organizations that provide assistance to people nationwide.  You should also contact your local, state or county’s department of emergency management (or similarly named agency) to obtain assistance information as well.

Federal Emergency Management Agency (FEMA) -- Those living in disaster affected areas can call the FEMA disaster hotline at 1-800-621-FEMA (3362) or by visiting their website.  The information includes "Are You Ready? An In-depth Guide to Citizen Preparedness", FEMA’s most comprehensive guide on emergency preparedness. 

The American Red Cross -- The American Red Cross and its local chapters are a helpful resource to contact following a disaster.  Information is available by calling 1-866-GET INFO (438-4636) or by visiting the Red Cross website.

NOAA Extreme Weather Information Sheets -- NOAA Extreme Weather Information Sheets (NEWIS) contain contact information for local, regional, and national organizations that can provide aid and information during tropical storms, hurricanes, and other extreme coastal events. NCEI created these sheets to help residents of coastal states and the two US territories that are particularly at risk from tropical storms and hurricanes. Click the links below to download your area's NEWIS.

Checklist for Persons with Disabilities:

[  ]  Call GOHSEP - Louisiana (formerly the Office of Emergency Management) in your county now to register for special assistance and to find the nearest special needs shelter to you. The county contact information for GOHSEP is available at 225-925-7500 or visit their website here. 

To contact the Mississippi Emergency Management Agency, please call 601-933-6362 or visit Ask your parish/county Office of Emergency Management whether there is special transportation available to you for evacuation.

[  ] Prepare a medical information list that includes:

    • Names and contact information for medical providers
    • Health insurance information
    • Medications you use
    • Adaptive and support equipment you use
    • Allergies and sensitivities
    • Special care instructions
    • Instructions for getting you out of your home, if necessary
    • The best way to communicate with you, if you have communication difficulties

[  ] Send copies of important documents to your out-of-town contact person.

[  ] Have a pet care plan. Shelters do not always accept pets. Contact your local animal shelter.

[  ] Have an extra battery for a motorized wheelchair or scooter. A car battery also can be used with a wheelchair but will not last as long as a wheelchair's deep-cycle battery. Check with your vendor to know if you can charge your battery by either connecting jumper cables to a vehicle battery or connecting batteries to a converter that plugs into a vehicle’s cigarette lighter. Caution: Charge only one battery at a time.

[  ] Have a patch kit, can of seal-in-air product, inner tubes for a motorized wheelchair or scooter with inflatable tires.

[  ] Have a lightweight manual wheelchair for backup.

[  ] Have a converter for your communication device.

[  ] Pack a low-tech communication board and preprinted key phrases in your disaster kit.

[  ] Order an adaptor kit if you are using a BiPAP. Respironics has a kit that can be used with a car battery and a marine battery.

[  ] Enroll in your electric company's "priority reconnection service", if available. Even with this "priority reconnection service," your power could still be out for a long time following a disaster. Individual homes do not have reconnection priority over emergency facilities.

[  ] Contact your utility company and fire department before you connect a generator to house wiring. Connecting a generator is specifically prohibited by law in some areas. Evacuating to a special needs shelter may be safer than staying at home with a generator during a disaster.

Create a Disaster Supply Kit 

Keep a disaster supply kit in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, letter or picture board, adaptive equipment, and batteries. If you cannot speak, attach a small recorder (like those found on key chains) on the outside of the bag. The recording should say something like. "My name is ____. I cannot speak. I communicate by _____. In case of emergency, please call ____."

Important Family Documents 

Keep these records in a waterproof, portable container

[  ] Copy of will, insurance policies, contracts, deeds, stocks, and bonds

[  ] Copy of passports, Social Security cards, and immunization records

[  ] Record of credit card accounts

[  ] Record of bank account numbers, names, and phone numbers

[  ] Inventory of valuable household goods and import telephone numbers

[  ] Family records (birth, marriage, death certificates)

[  ] Copy of Supplemental Security Income award letter

Whom to Contact about Replacement of Important Documents 

Your U.S. senators and representatives will have staff available to assist you should a disaster or terrorist act affect your area.  They will be able to provide you with the latest information about federal resources that are available and often local resources as well.  You can contact them by calling the Capitol Switchboard at (202) 224-3121.  To identify your members of Congress and obtain their contact information, including locations and phone numbers for local offices, please visit the Advocacy Action Center of The ALS Association and enter your zip code in the space provided. Below is contact information for issuers of common important documents. 

Driver's License Department of Motor Vehicles
Government Issued ID Contact the issuing authority
Insurance Policies Your insurance agent or company
Military Discharge Department of Veterans Affairs
225-922-0500, 1-800-827-1000, or TDD/TTY 1-800-829-4833
Passports State Department - Passport Services, 202-955-0430 (24 Hours)
Birth, Marriage, and Death Certificates Bureau of Records in the appropriate state
Social Security or Medicare Cards Local Social Security Office
1-800-772-1213 or TDD/TTY 1-800-325-0778
Credit Cards The issuing companies as soon as possible
Mastercard Contact issuing financial institution
VISA Contact issuing financial institution
American Express 1-800-441-0519
Discover 1-800-DISCOVER (1-800-347-2683)
TDD/TTY 1-800-347-7449
Titles to Deeds Records department in which the property is located
Stocks and Bonds Issuing company or your broker
Wills Your attorney
Income Tax Records The IRS Center where filed, your accountant, or 1-800-829-1040
Citizenship Papers Bureau of Citizenship and Immigration Services
Mortgage Papers Lending Institution




More Resources: