Excepts from Life with a Tracheotomy by Jill M. Sybalsky
I do a BUNCH of airline travel and since Sept 11th it is NO fun going through security. Security always want to paw through everything because they have ZERO clue what they are looking at. Add to a few that think they can do whatever they want and hide behind claiming "it's the law." Believe it or not they are usually WRONG about it being the law.
What if I need Oxygen?
You can fly on any airline with oxygen. BUT...you must set this up in advance with their Special Assistance Department (or similar name). There is a charge since you can only use their O2. Any connecting flights you have to pay for O2 on those planes also. The only way to get price reduced on O2 is to check with each airlines regarding cost and tell the airline you choose "that so and so airlines only charges xyz".
You might want to check into an air ambulance if you would have to have multiple connections with O2 needed. Some insurances cover air ambulance expenses. I know nothing about air ambulance travel, but this URL might help:
Talk with Special Assistance
I travel on American the most. In fact I travel so much I have a person in special assistance that deals with me on a personal level and makes things so much easier. They have a folder in their computer connected to my husband's million mile account. It lists each and every piece of equipment, manufacturer and the airline's approval for me traveling with everything. Yes it was a pain to set up originally, gathering all the information about each equipment, getting waivers when the company wouldn't provide info about the batteries, but now it's one phone call "Hi it's me", wham seat assignments up front, info put in passenger profile. This calms agents when they see you walking in with a million pieces of luggage, and luggage that is oversized--they panic and start with you can't fly with that--"read my passenger record, its a short novel"--they babble-"READ the record then we will talk!"--they read my short novel--oh....fine, no problem (relief from them--then a story about the horror of people and what they try to check as luggage).
A few keys to traveling by air--
1. At the counter when you check in, ask for a supervisor to walk you through security. This gets you to the front of the line and they can help deal with security and FAA folks when they try to take equipment away from you. YES I have had FAA take away (temporarily) things that I would need to keep me alive, but a supervisor can override them and take the item back. You then have to have the FAA supervisor or FAA Complaints Resolution Official that handles complaints (which by law must be present at the airport) and airline supervisor walk with you to talk to the pilot, and it becomes the pilot's call if you can or can't have the equipment on board.
BEWARE they will try dumb things like the stewardess will keep it and give it to you if you need it, or the pilot will keep it in the cockpit until you need it. All it usually takes is to ask to speak to the pilot privately and tell him in an emergency you can't wait for the stewardess or him to get you the stuff, for you will be dead by then. Second ask him what medical training his staff has for dealing with a trach patient and what they would do once an emergency occurs. Telling them you, and in my case whoever is traveling with me that they are trained to handle the emergency as long as you have your equipment with you.
Inform them that FAA rules do not fit every situation and it is your absolute right to stay alive and be allowed to travel. I also tell them that if they read my profile attached to my ticket they will see all this has been pre-approved by the airline's corporate office. I also tell them I fly regularly and this is outrageous treatment and not up to their standards for customer satisfaction. I have never had a pilot disagree and they usually repeat the last line about FAA rules and add something about how no one is going to get through the cockpit doors so there is NO RISK for you to have your equipment. Make sure he tells this to the FAA person, once they do the FAA person usually says something stupid like don't let anyone see you have this equipment or allow them to take it away from you and use it as a weapon. I always just say sure and think to myself you give me a weapon when I fly--seat belt extender, can of soda, a blanket...you get the idea.
2. Have a letter (I suggest undated) from your doctor saying it is medically necessary for you to travel with (insert list of items--nebulizer, suction machine, tweezers, paramedic scissors, ambu bags, etc) Have your doctor use words like "medically necessary"...."required to breathe" It's a good idea to have your doctor state items are sterile (or need to remain sterile); this slows them down in the pawing through your stuff. Also if you have a latex allergy make sure that is in the letter and insist they use non-latex gloves before searching your stuff. This falls under FAA guidelines regarding items like syringes for people that need medication instantly. You can show this to the FAA supervisor and see if that is enough to offset the trip to the aircraft and talk with the pilot.
3. Don't back down and let them intimate you. Hell, I had the national guard threaten to call Port Authority Police on me at JFK. I told him to do what he felt he had to, but his job was not to interfere with people trying to resolve an problem. He backed down and did nothing but stand there and act like an asshole. So be aware you will run into jerks that are mad with authority and no clue about how to deal with your special needs, let alone treat you like a human being.
4. Padlock your carry ons. This slows them down in pawing through your stuff. Demand they get NEW non-latex gloves (I have latex allergy so I don't want them touching anything, let alone anything going into my trach tube) and tell them the items you are carrying needs to remain sterile (this cuts down on them pawing through your stuff). You will be amused to know most places don't have gloves and will allow you to handle the equipment to show to them--and usually they have no clue what they are looking at.
5. If they want to do bomb swabbing, demand they use a fresh swab for your stuff.
You may ask why I bother with gloves and new swabs--in this day and age you have no idea who has what germs and security folks are handling stuff that goes into your trach which goes into your lungs, why take a unnecessary risk? Second with them pawing through someone else's stuff and then yours--it is the fastest way to spread any bio-chemical threat (or anthrax). All it takes is one terrorist to have what looks like spilled powder in their luggage, security touches it as they inspect the terrorist luggage (either by their hand or the swabs), along comes the next person, the security persons contaminated hand/swab now goes in that luggage and so forth--spreading from one luggage case to another sending the threat worldwide very rapidly. NO THANKS.
6. Never check anything that will be needed on the other end--what happens when your luggage doesn't make a connection, you want to risk not having your medically necessary equipment? or the airlines damaging your stuff? Let alone trying to get a replacement at 1 or 2am. Airlines must by law waive the limits of carry on baggage if it contains medical equipment/items. They may require you to sign a wavier releasing them from liability DO NOT sign it, they are NOT allowed to do this, point them at the Dept. of Transportation if they try.
7. If you every get a tag that says inspected by (name of airline) leave it attached to your luggage and use it EVERY travel, that helps let them know you have traveled with this equipment before and were approved.
8. Go 3 hours early so you don't miss your plane and you can calmly deal with all the idiots that have power trips about YOUR SAFETY. You don't want to miss your plane and sometimes it can take hours for them to decide to let you fly.
9. Always tell them you wish to PRE-BOARD. Always tell them if you have a connecting flight, as it is their responsibility to provide assistance so you and any checked medical devices make the connecting flight. You have a cause for complaint against the airlines if they mess up on any of these. This also guarantees you get all your equipment in the overhead compartments or under the seats where you are sitting (as long as you make sure to fit all your devices into luggage that will fit in the cabin).
If you travel with a manual wheelchair, let them know when you check in at the counter that you'd like your wheelchair stored in the cabin. By law any plane with over 100 seats they MUST make room to store one wheelchair in the cabin. Be aware they will try every excuse to not do what the law requires. Now they do only have to accommodate one wheelchair in the cabin, and that goes to who tells the agent first when they get their tickets or check in.
The personnel is supposed to assist you in getting you to and from your seat, to and from the restroom, opening packages and identifying the food, and load and retrieve carry-on items INCLUDING assistive devices stored in the cabin. Be aware half the time they will claim they are not allowed to assist. Point them to the FAA law.
10. Write Secretary of Transportation (was Norm Mineta when article was written) about how FAA needs to better accommodate those with trachs and the medical equipment needed and how the airlines and security checks hinder your safe travel by hassling you and threatening or actually taking away your medically necessary equipment.
11. Seek FAA's Exemption for travel or Medical Exemption Petition
Why Paramedic Scissors?
Take paramedic scissors, those they have less issues with. Be aware you would need the scissors if the plane dropped the oxygen masks, you would need to cut the mask off and put the air tube in the trach tube. Tape to secure air tube would be handy as well.
Some helpful URLS (Links working as of September 2013)
URLs regarding travel for those with disabilities, or where you should write and complain:
Air Travel Service Problems How complaints are handled
Aviation Consumer Protection Division
U.S. Department of Transportation
Room 4107, C-75
Washington, DC 20590
TSA Travelers with Disabilities and Medical Conditions
Guidance Regarding Aviation Rules and Statutes
U.S. Department of Transportation
Air Carrier Access Act
Other ADA Links:
For things like Greyhound, Amtrak, etc
New Horizons: Information for the Air Traveler with a Disability
Information for the Air Traveler with a Disability
Key POINT from this document:
-All carriers are now required to have a Complaints Resolution Official (CRO) immediately available (even if by phone) to resolve disagreements which may arise between the carrier and passengers with disabilities.
-Travelers who disagree with a carrier's actions toward them can pursue the issue with the carrier's CRO on the spot.
Please send your suggestions, comments or questions, as well as email for the Secretary and other Department of Transportation officials, to:
Federal Aviation Administration
800 Independence Avenue, S.W.
Washington, DC 20591
General Information and Employee Locator: 202-366-4000
Public Affairs: 202-366-4570
Hearing Impaired TTY (Hours 9:00am-5:30pm): 202-755-7687
FAA's Office of Aviation Medicine @ 202-267-3535
Carrier Access Act of 1986
The Americans with Disabilities Act of 1990
U.S. Department of Transportation
400 Seventh St., S.W.
Washington, D.C. 20590
Disability Direct a government site of federal agencies working on disability issues.
WAPD Resources: Travel
World Association of Physically Disabled Main Page