Air Travel with ALS: Advance Planning is the Key

by ALSN Staff on Wed, 2010-09-01 09:27

With the holidays just around the corner and air travel likely for many families, now is the opportune time for people with disabilities to carefully plan their sojourns.

Learn from others

“Traveling with a disability is not easy, but with some extra preplanning and research, it is completely doable, and well worth it,” says Mike Bougher, 46, of Benicia, Calif., who received an ALS diagnosis in 1998.

In the travel tips section of his website, Bougher addresses air travel with a power wheelchair or ventilator, and even discusses “Wheelchairs in the Rainforests.”

Bougher provides comprehensive details about his travel preparations. For example, he and his wife Jen have wheelchair disassembly down to a fine art for commercial air travel. For the benefit of baggage handlers, the couple’s preparations include attaching two brightly colored laminated signs showing how to set and release the chair’s brakes.

Others with ALS have recounted their travel experiences, both good and bad, and how they made the experience more bearable, on Flyer Talk Forums/ALS Travel Advice. There you’ll find practical advice, such as to bring a blanket and extra socks to keep a person with ALS warm while flying. Noted one contributor, “[The] most important thing to remember is to help preserve his dignity. ALS is a disease of the body, not the mind.”

Professional assistance

Are you up for travel but not sure how best to arrange it? Several online organizations offer to help; just be sure to check out any service provider carefully before handing over any money.

Access-Able Travel Source and Global Access News both provide links to disability-related agencies and services around the world. The Society for Accessible Travel & Hospitality is an educational nonprofit membership organization that, for an annual fee, offers travel advice and services to people with disabilities.

At the airport

The Transportation Security Administration (TSA) wants to help travelers with disabilities and their traveling companions get through security screening as smoothly as possible.

TSA has created an optional communication card that helps travelers discreetly inform transportation security officers (TSOs) about any disability, medical condition or medical device that could affect security screening. Travelers simply write their personal information on the wallet-sized card and hand it to the security officer. Note: These cards do not exempt anyone from security screening. The cards (available here as a PDF file) can be printed off at home.

Other things to know about screening: Any of your traveling companions may be present to assist you throughout the screening process, wherever it takes place. For those unable to walk or stand, the TSO will conduct a pat-down search while you’re in your wheelchair or scooter. The family/medical liquids lane is there for anyone needing additional assistance in screening.

Flying with a respiratory device

It is highly recommended that you notify the airlines well ahead of time if you plan to use a respiratory device during the flight. Currently, all disability-related aids  — including personal medical oxygen, ventilators, nebulizers, respirators, CPAPs and BiPAPs — are allowed through security checkpoints once they have undergone screening.

Unlike portable oxygen concentrators, positive air pressure devices like Respironics’ CPAPs and BiPAPs need not have a special label in order to be carried onboard. To be screened, CPAPs must be taken out of their carrying case, put in a plastic bag (which you must provide) and placed in a bin for X-ray screening. Face masks and tubing can remain in the carrying case.

Anyone traveling with battery-operated medical equipment should ensure they have sufficient battery power to cover preflight, in-flight and post-flight time — about 50 percent longer than the scheduled flight time.

What if things go wrong?

Laws protect the rights of travelers with disabilities, but as a traveler it’s your responsibility to have proper government-issued identification and a boarding pass; to cooperate with screening procedures and instructions; to communicate your disability or health-related needs; and to avoid transporting any prohibited items.

If people experience difficulty during the actual screening process, they should contact the transportation security officer supervisor at the checkpoint. If they feel that their civil rights have been violated by TSA, they can file a claim with TSA’s Contact Center at: Or, contact the Department of Homeland Security’s Office for Civil Rights and Civil Liberties to file a complaint.

To pursue a claim against TSA for personal or property damage, you must complete form SF-95, “Claim for Damage, Injury or Death” and submit it to the Claims Management Office within two years. It may be submitted electronically to or in hard copy to: TSA Claims Management Branch; 601 South 12th St.,TSA-9; Arlington, VA 20598-6009.

The SF-95 form and additional relevant information may be found at:

Airline hassles

Problems with boarding passengers with disabilities and moving their wheelchairs to and from the plane are the responsibility of the airlines, not TSA. Similarly, the decision as to whether to allow a nontraveler to provide personal assistance at the gate is also within the airlines’ purview.

The U.S. Department of Transportation (DOT) offers a toll-free hotline to assist travelers with disabilities: (800) 778-4838 (voice). The hotline is staffed 9 a.m. to 5 p.m., Eastern time, Monday through Friday (except holidays). More information is available at

Complaints about airline services (other than safety or security issues) should be directed to DOT’s Aviation Consumer Protection Division. This office accepts complaints on its website; by phone at (202) 366-2220; or by mail: Aviation Consumer Protection Division; C-75, Suite W96-432 (West Building); U.S. Department of Transportation; Office of the General Counsel; 1200 New Jersey Avenue, S.E.; Washington, D.C. 20590.

Someday … a charter flight alternative

Mobility Air Transport, a fledgling nonprofit company with a small fleet of small corporate-type aircraft, hopes to make air travel hassles a thing of the past for travelers in wheelchairs.

Through “ChairFlights,” the company plans to offer custom flights for any purpose (not just for medical reasons) to wheelchair users and up to four companions. Mobility Air Transport says its flights will become available in late 2010.

The company says its fares will match the lowest comparable commercial airline fares. Advantages include no need to check luggage, no security screening, no long layovers between connecting flights, and no waiting to be the last off the plane or for a wheelchair to be delivered. Passengers may stay in their wheelchairs during flight, and service animals are permitted aboard. There’s room for medical equipment and electricity is available during flight. Mobility Air Transport can be contacted via e-mail at

A worldwide medical evacuation option

One air service is not for getting there but for getting out of there. MedjetAssist provides assistance to those who have to be hospitalized while traveling.

MedjetAssist, which describes itself as “a medical evacuation membership service,” arranges bedside-to-bedside medical transfer for members who are hospitalized at least 150 miles away from home.

An individual membership covering travel both in the United States and abroad costs $250 a year; a domestic travel membership is $175.

In addition to its website, the company offers a toll-free number to call for more information: (800) 527-7478. E-mail:

ALSN Staff
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