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Traveling Tips for People Living with Neuromuscular Diseases

Before you take off — a little preparation goes a long way

Printable PDF of this page

The basics:

  • Take time to prepare for traveling.
    • Packing — plan in advance for what needs to be packed in checked baggage versus a carry-on. Items like medications and battery chargers should be packed in carry-on bags in case checked luggage is lost or delayed.
    • Travel time may take longer.
  • When booking travel, consider your comfort and plan accordingly. Some people prefer to take direct flights in order to reduce the number of times equipment and luggage needs to be transferred; others prefer to break up long trips by scheduling a layover with ample time to allow for a restroom break.
  • Know your equipment.
    • Create a laminated card with this information for airlines:
      • Free lever handle location
      • Type of battery
      • What can be removed
      • Width and height
      • How to make your chair as compact as possible 

Before you go:

  • Issued by the U.S. Department of Homeland Security, the disability notification card ("Z" card) should make commercial air travel a little easier for people with disabilities.
    • The blue, wallet-sized card allows people to discreetly notify airport security personnel of a disability, medical condition or medical device that might affect the screening they’re required to undergo before boarding a plane.
  • Be sure to provide advanced notice to airlines. You can request bulkhead seating (on most planes this provides more space for easier transfers), and inquire about any special requirements for traveling with mobility and/or respiratory equipment.
  • The limit of one personal bag and one carry-on bag DOES NOT apply to medical supplies.
  • Pack your medication in a separate pouch or bag for easy access during security.
  • Check with your physicians to determine if special care (such as refrigeration) is needed to store your prescriptions while flying.
  • Make sure you have all required documents before traveling, including a summary of medications and other health care needs in the event there is a medical emergency while traveling.
  • Make sure all personal belongings are clearly labeled with your name before traveling.
  • Traveling can be a stressful time for someone with a disability. The Transportation Security Administration (TSA) has a toll-free hotline, (855) 787-2227, to provide information to passengers with disabilities and medical conditions and their families before they fly.
    • TSA recommends calling 72 hours in advance to learn what to expect at security checkpoints. They also will be able to coordinate your security screening ahead of time if it knows about your disability in advance. This is a great resource for families traveling with a child who has a disability. You can plan in advance, and know exactly what to expect at specific airports.

Airport security screening: Know your rights and responsibilities

Items allowed through security:

  • Wheelchairs
  • Scooters
  • Crutches and canes
  • Walkers
  • Casts
  • Support braces
  • Service animals
  • Orthopedic shoes
  • Exterior medical devices
  • Assistive/adaptive devices
  • Augmentative communication device
  • CPAP and BiPAP breathing machine 
  • Hearing aids 
  • Cochlear implant
  • Tools for wheelchair disassembly/reassembly
  • Personal supplemental oxygen
  • CO2 personal oxygen concentrators
  • Medications and associated supplies
  • Other disability-related equipment

Other:

  • Frozen items are allowed through security but must be frozen solid when going through X-ray screening.
  • Liquid medication larger than 3.4 ounces each must be separate from other items going through security and must be declared to a TSA officer.

Tips for the security screening process:

  • If a personal search is required, you may choose to remain in the public area or ask for a private screening (whichever you prefer).
  • You should be offered a private screening if lifting or removal of clothes is required; and you should be offered a disposable paper drape for additional privacy.
  • Don’t be afraid to ask for help — and privacy.
  • Let officers know your abilities.
  • Your caregiver, assistant or family member may assist you in both the private and public screening.
  • You should not be asked to do anything that surpasses your physical abilities.
  • You are allowed to stay in a chair or wheelchair if you have physical weakness or are unable to walk.
  • Medication is normally X-rayed, but you have the option for a visual inspection.
    • Tell the TSA officer if you would rather have that option.
    • You will be asked to repack your bag to avoid contamination and prevent anything from being damaged.
  • Medication does not need to be labeled.

Traveling with children who have disabilities:

  • Inform the TSA officer of  your child’s disability.
    • Inform officers of your child’s abilities.
    • Offer tips to the officer regarding how to keep your child comfortable and the best way to help him/her during the screening process.
  • Know that you should not be separated from your minor child at any point during the security screening.
    • You are allowed to escort your child to the private screening area.

Security screening when traveling with a service animal:

  • At the TSA Security Screening area, you are entitled to move to the front of the security line when traveling with a service animal.
  • You must carry appropriate identification for your service animal.
  • At no time will you be separated from your animal.
  • TSA officers have been trained not to play with or touch animals. If a TSA officer needs to pat down your service animal, they must ask for permission.
  • All airports have designated areas for service animals to relieve themselves; ask a member of the airport personnel to direct you to that area.

At the airport: Helpful hints

Complaint Resolution Officer (CRO) can help you in a variety of ways:

  • A CRO is a designated person within each airline at every airport that works directly with individuals with disabilities.
  • The CRO is in charge of making sure that the airline is following all federal regulations affecting individuals with disabilities.
  • If at any time during your travel process you feel that the laws in place are not being followed, you are able to speak with a CRO.
    • If the airline employee you are speaking with does not know what a CRO is, ask to speak with their supervisor who can then direct you to the CRO.
    • You will either be able to speak with a CRO in person or over the phone while at the airport.
  • If you feel you need to speak with a CRO after you have left the airport, call the specific airline and speak with a representative.
  • If the CRO agrees with the passenger that a violation of the rule in question has occurred, the CRO must give the passenger a written statement summarizing the facts and what steps, if any, the air carrier proposes to take in response to the violation.

For more information, go to the airline’s website or call its toll-free number.

Sources

MDA Services Resources: Transportation and Travel

TSA Travelers' page

Traveling with Ease: Travel Tips and Tools for Travelers with Disabilities (MDA webinar)

Respiratory Equipment: Air Travel Nightmare (Quest article)

Air Travelers Update: Label Issue Drags On (Quest article)

Helpful Card for Air Travelers with Disabilities (Quest article)

Who Ya Gonna Call When Air Travel Goes Bad? (Quest article)

‘TSA Cares’ To Aid Air Travelers with Disabilities (Quest article)

Vacation Abroad Accessibly (Quest article)

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