Helpful Tips for Traveling With ALS

In general, people with disabilities are traveling more than ever, including those living with ALS. In response, the travel industry is paying greater attention to their special needs by providing more services and accommodations. The amount of information is increasing and is more readily available from disability organizations and transportation company websites. In preparation for the upcoming fall travel season, we held a webinar “Traveling with ALS.” Read more for some great tips on how best travel with ALS and to help people with ALS and their companions anticipate some of the challenges associated with accessible travel.

For the most up-to-date travel information, we turned to Alisa Brownlee, our travel guru and Assistive Technology Specialist with The ALS Association Greater Philadelphia Chapter and National Office. On July 31, 2017, she presented a webinar on how to travel safely and successfully with ALS. Here is a summary of some of the useful tips discussed that cover several different means of transportation – airline travel, cruising, RVing, train travel, and driving. All provide helpful considerations and resources that a person with ALS should bear in mind while traveling.

For more information, view Alisa’s webinar and presentation slides.

Before You Go

  • Always check with your physician prior to any type of extended travel.
  • Carry a letter from your health care provider, preferably on letterhead, which describes your medical condition, medications, potential complications, and other pertinent medical information.
  • Carry your living will with you.
  • If you take prescription medication, make sure you have enough to last during your entire trip. Make sure to ask your pharmacy or physician for the generic equivalent name of your prescriptions in case you need to purchase additional medication abroad.
  • Make sure you have adequate and up-to-date health insurance coverage while abroad, including coverage for medical evacuation. Check with your health insurance provider to see whether you will be covered overseas, in which countries you will be covered, and under what circumstances.
  • Ensure that anyone traveling with you also has adequate insurance coverage. Note that U.S. Medicare and Medicaid programs do not provide payment for medical services outside of the United States. You can find the names of some of the companies offering short-term health and emergency assistance policies on the Bureau of Consular Affairs website.
  • Have emergency contact information, a copy of the itinerary, airline tickets, credit cards, and passport details saved and readily accessible by a trusted family member or friend who is not traveling with you.
  • Be prepared and know the answers to key questions before you depart – What type of assistance with you need? Can you walk from the door of the plane to your seat, or do you need an aisle seat? If you transfer planes, how much time is needed during transfer? If you use a ventilator, are you sure the appropriate plugs are available? If you have special dietary needs, does the airline or hotel have the food/formula you need?

Airline Travel

  • People with ALS who are planning to travel by plane need to determine if they are safe to travel. Air pressure is different in a plane and you may need a special test to ensure that you are safe to fly.
  • When making a reservation, book as far in advance as possible. Tell the reservations person that you will be traveling with a wheelchair or scooter.
  • Consider alternative options if the walk to the restroom is too long, or the airplane restroom is too small. For males consider condom catheter or adult diapers; for females, external female catheter or adult diapers. In newer and refurbished wide body jets (the ones with two aisles) there is one accessible restroom. It is large enough to fit the aisle chair inside, thereby making it possible to transfer to the toilet. These planes generally carry an aisle chair, but it is a good idea to confirm that one will be on board.
  • Always confirm with the airline that they have a record of your requests and requirements at least 48 hours prior to departure.
  • All airline passengers must undergo screening at the TSA security checkpoint. If a passenger with a medical device, medical condition, or a disability is approved to use TSA Pre✓®, he or she does not need to remove shoes, laptops, 3-1-1 liquids, belts, or light jackets during the screening process. However, everyone is required to undergo screening at the checkpoint by technology or a pat-down.
  • Always check your chair or scooter at the boarding gate and request it be brought back to you at the gate when you arrive and/or during a layover between connections. It is suggested that you use gel or foam filled batteries (also known as dry cells) in your scooter or power chair. Before landing, remind the flight attendant that you will need your equipment brought to the gate, so they can radio ahead to make the arrangements.
  • If you have any problems or damage to your equipment, ask to speak to the “Complaint Resolution Officer” (CRO). Each air carrier is required to have a CRO available by phone or in person at all times. This person is specially trained in dealing with problems that travelers with disabilities may encounter.
  • 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 — personal medical oxygen, ventilators, nebulizers, respirators, CPAPs, BiPAPs, Trilogies — are allowed through security checkpoints once they have undergone screening.
  • 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. Only some airplanes have electrical outlets to plug in devices, so be prepared to use batteries on your respiratory device if needed during flight.

Air Travel Resources

  • TSA’s toll free helpline, called TSA Cares, enables travelers or families of passengers with disabilities and medical conditions to call 1-855-787-2227 with any questions about screening policies, procedures, and what to expect at the security checkpoint 72 hours prior to traveling.
  • The TSA Contact Centeris a customer call center that is available to answer questions by email at TSA-ContactCenter@tsa.dhs.gov or toll free phone at 1-866-289-9673.
  • Passenger Support Specialistsare highly trained TSA officers at airports who have special training in successfully engaging with, and screening, individuals who have disabilities or medical conditions, or who travel with medical devices.
  • TSA’s websitehas an entire section devoted to traveling with disabilities, medical conditions, and medical devices.
  • A helpful interactive Twitter account, @AskTSA, allows individuals to tweet a question about the screening process for medical devices and for medical conditions, from traveling with a temporary condition (e.g., a cast on a broken arm or leg) to traveling through a checkpoint wearing an ostomy pouch beneath one’s clothing.
  • Air Carrier Access Act
  • New Horizons: Information for the Air Traveler with a Disability

Wheelchair Accessible Vans and Transportation

  • Most major cities have at least one company that runs an airport shuttle service between the airport and hotels. The majority of them either can provide accessible service or will provide accessible alternate service.
  • A good resource for finding transportation options that is often overlooked is the Center for Independent Living in that city. Most cities have one and they all have an information and referral person. They often can put you in touch with transportation options that are generally used by local residents, but that can be utilized by visitors.
  • Paratransit is a door to door accessible service that must be provided by any city in the U.S. that has a public transit system. It is available to passengers that, due to disability, are unable to use the normal public transit system, or in many cases, is more broadly available when the regular bus or train system is not yet fully accessible.
  • Taxis and ride sharing services, like Uber and Lyft, may have accessible vehicles for hire, depending on the city. You should check with each company and inquire about the availability of accessible vehicles in the city you are traveling to.
  • Accessible vans can be rented by the day, week, or month, depending on your needs. Before you rent, know what type of area you’ll be driving in – do you need a smaller vehicle for easier parking? Or a larger vehicle to accommodate more equipment?
  • Accessible RVs can be rented or purchased. Accessible RVs have wheelchair lift, wide entrances, and larger interior aisles to accommodate the wheelchair’s girth. An accessible RV may also feature a roll-in shower, which is larger to allow for more equipment or people.

Accessible Transportation Resources

Rail Transportation – Amtrak

  • Amtrak trains accommodate most wheelchairs in use today, provided they meet the ADA definition of a “common” wheelchair.
  • Dimensions: The chair should not exceed 30 inches (76 centimeters) wide, 48 inches (122 centimeters) long, and 2 inches (5 centimeters) of ground clearance.
  • Weight: The weight limit for an occupied wheelchair is 600 pounds (273 kilograms).
  • Manual and battery powered: Permits both manually operated and battery powered.
  • Amtrak makes many accommodations during boarding and detraining for passengers who are traveling with a disability, such as:
  • Assisting you across the gap between the platform and the train by using a bridge plate
  • Providing a level boarding through the use of station-board lifts
  • Providing a wheelchair ramp to help you board the lower level of the train
  • Allowing you to remain in your wheelchair, if wheelchair lockdowns are available, or transferring you to an accessible seat. If you choose to transfer to an accessible seat, you may stow your wheelchair close by.

Cruising

  • Cruise lines making an increased effort to accommodate passengers by closely adhering to the guidelines of the Americans with Disabilities Act. Cruising has become the vacation of choice for many travelers with mobility issues.
  • New ships are being designed with the needs of travelers with disabilities in mind by offering roll-in showers with drop down benches, raised toilet seats, grab bars, closets with pull-down rods, and wheelchair-level desks, sinks, and outlets.
  • It is recommended that you seek the assistance of a travel professional that is trained or certified to work with travelers who have a disability.

Resources

  1. Medications when Traveling Internationally
  2. Traveling with a Ventilator or Breathing Machine
  3. Disability Organizations
  4. Wheelchairs and Assistive Devices
  5. International Health Insurance
  6. Traveling with Disabilities
  7. About the Air Carrier Access Act
  8. Flying with a Disability
  9. Security Screening for Disabilities and Medical Conditions
  10. Cruising with a Disability
  11. Listing of Accessible Travel Specialists
  12. Resources and Tips for Disabled Travelers
  13. Society for Accessible Travel and Hospitality

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