Questions about plane travel with our disabled daughter.

[daughtersrus]

I posted this on the Community Board but they suggested that this may be a better board.

We're leaving for Hawaii in just over 2 weeks for DD's Make-A-Wish trip and I'm starting to panic.

We're flying United. I have some baggage questions. DD has a special needs car seat that is not approved for plane travel so it needs to be checked. I tried calling United twice and both times got someone that I could barely understand. The first one hung up on me and the second one placed me on hold for quite awhile. When he came back, he said that both the car seat and DD's wheelchair have to go with the baggage but both are exempt from the baggage fee. I explained to him that both of these items are very expensive (the car seat is almost $1,000 and the wheelchair is about $7,000). He said that there wasn't but it's the customer's responsibility to pack the items sot hat they are not damaged and that United is not responsible.

This just doesn't seem right to me.

On the way there, we have to change planes in San Francisco with a little over 1 hour layover. On the way home, our flight is non-stop to Chicago (about 8 hours). We have never flown with DD so I have no idea how or where I will be able to change her diaper on the plane. DD is 16yo but about the size of a 1st grader.

DD has a prescription medication that is liquid and needs to be kept cold. Can we bring that on the plane in a cooler with ice packs? Does this count towards the 1 quart size bag of liquids that we can bring on?

Thanks!

edited to add...

DD's car seat is not approved for plane use. We need to bring it with for the limo to/from the airport as well as for use in the minivan once we get there. Make -A- Wish said that there will be some type of seat or harness for DD to use while on the planes.

 

[visitingapril09]

I posted this on the Community Board but they suggested that this may be a better board.

We're leaving for Hawaii in just over 2 weeks for DD's Make-A-Wish trip and I'm starting to panic.

We're flying United. I have some baggage questions. DD has a special needs car seat that is not approved for plane travel so it needs to be checked. I tried calling United twice and both times got someone that I could barely understand. The first one hung up on me and the second one placed me on hold for quite awhile. When he came back, he said that both the car seat and DD's wheelchair have to go with the baggage but both are exempt from the baggage fee. I explained to him that both of these items are very expensive (the car seat is almost $1,000 and the wheelchair is about $7,000). He said that there wasn't but it's the customer's responsibility to pack the items sot hat they are not damaged and that United is not responsible.

This just doesn't seem right to me.

On the way there, we have to change planes in San Francisco with a little over 1 hour layover. On the way home, our flight is non-stop to Chicago (about 8 hours). We have never flown with DD so I have no idea how or where I will be able to change her diaper on the plane. DD is 16yo but about the size of a 1st grader.

DD has a prescription medication that is liquid and needs to be kept cold. Can we bring that on the plane in a cooler with ice packs? Does this count towards the 1 quart size bag of liquids that we can bring on?

Thanks!

edited to add...

DD's car seat is not approved for plane use. We need to bring it with for the limo to/from the airport as well as for use in the minivan once we get there. Make -A- Wish said that there will be some type of seat or harness for DD to use while on the planes.

You can't use the carseat I don't think. Can you support her in a regular chair?

The med is fine. It needs to be labeled with a medication label. They may swab it for explosives (thats what they did with ours)

The wheelchair you will use right to the plane to board. They will then take it underneath. It will be at the plane door when you exit.

The diaper changing is awkward. If you have a handicapped seat on the plane the dividers between seats lift up. What we do (ds is 11) is lay him across the seat and then have one of us hold a covering up and over him to give some privacy. This is the only way we have come up with changing on the plane.

 

[blondietink]

We use an adult sized travel chair for my 20 yo DS. He also wears diapers. I have become adept at changing him in the bathroom on the airplane. He can stand which helps. I sit on the closed toilet while he stands in front of the door. Then I change his diaper. Good thing he is small (95 lbs.) or it would be nearly impossible because the bathrooms are so small. The travel chair gets stowed beneath the plane and is waiting for us when we disembark. However, we usually stay until the plane is almost empty, as it takes them some time to get the travel chair up to the exit door. If you only have an hour to change planes, you might be cutting it very tight.

 

[blondietink]

Forgot to add .... your local Make-A-Wish who made the travel arrangements should be taking care of the logistics for you like informing the airline of your needs. If you haven't talked to them about it, you should.

 

[peemagg]

I would not check the car seat or wheelchair until at the gate. This is what I do with my scooter.

Also if the airline does damage any of her special equipment, they are responsible for the cost of repairs or the full cost of replacement. Her equipment is exempt from the rules for luggage. I would though bring an extra bag with me for placing anything that will come off her wheelchair and place them in the bag and take it in the plane with me. The airline was right that none of her medical needs things will count against your luggage count.

Check out the Air Carrier Access Act for more info on traveling by air with disabilities.

 

[Cheshire Figment]

When you call the Airline, ask to speak to someone at the Special Services Desk. These are the people who deal with disabilities. (And generally English is their principal language.) They are the experts. And it is best to call during the middle of the day, you are more likely to get someone in the US or Canada.

 

[SueM in MN]

All good advice.

If you look in the disABILITIES FAQs thread, post # 15 is about air travel. It has some resources that are specific to Orlando (like links to the Orlando airport website) and some that are general (like links to the Transportation Security Administration site).
You will find the references to the things that other posters have written - like the medication rules for security, and gate checking a wheelchair. If your wheelchair can fold, it may also be able to fit in the onboard closet, if there is one on your plane. The car seat also may fit in the overhead bin or it may be OK for air travel, but just doesn’t have the sticker - check with the manufacturer. I know that some of the ones made by Columbia are.

You may also want to check into using an aisle chair to get on the plane; there is more information (with pictures with my lovely model) on that thread.

There are also links that talk about your rights traveling with a disability. For example, if the airline damages mobility or medical equipment, they are responsible to pay the WHOLE cost of repair or replacement. This is different than a stroller, where they could just pay a portion of the cost.

Here is a link to the United Airlines page about travel with wheelchairs, with a phone number to arrange for wheelchair service:
http://www.united.com/page/article/0,3224,1040,00.html

The bathroom is the worst thing about air travel. For a while my DD was obsessed with needing to use the bathroom on the plane. That gets to be very difficult when she can not stand and the airplane bathroom is so small. The size was a disadvantage and an advantage - since it is so small, there are lots of places I could ‘lean’ her against while pulling clothing up and down. Let’s just say it is an interesting experience.
TO help not need to worry about diapers leaking, check into inserts that go in the diaper to increase the absorbency. One brand is called Depends Boost inserts.

 

[Bete]

I actually multi layer my Alzheimer's mom with incontinence products when we travel. I use a Moliform liner; they are huge and will absorb both issues of toileting. They have never failed me. You can add booster pads to these liners, as well. It then all fits into the diaper. An adjustable diaper with tabs may be best here to hold all of this.

Try not to let her eat or drink too close to the trip's boarding time. Also, use the airport bathrooms with her just before boarding the plane. It might even be a good idea to get her tired just before the plane ride; so, she will perhaps nap on the plane. If you are really worried about leaking carry a disposable absorbent underpad for use on the plane's chair in a carry on. I don't think I would attempt using the airplane's bathroom.

Is there any way you can use a cheap wheelchair and/or car seat just for the trip? Is there a way to rent one once you arrive?

 

[maroo]

Forgot to add .... your local Make-A-Wish who made the travel arrangements should be taking care of the logistics for you like informing the airline of your needs. If you haven't talked to them about it, you should.

I totally agree with this. If you have not already called them. They may rent you guys a certain seat - they did for Lauren. We ended up having to purchase a seat that was FAA approved for the plane, but she didn't end up needing it.

As far as the wheelchair - I would try to do everything you can to avoid damage, simply because it would be such a pain to have it broken and be in Disney - but United is responsible for it once they take it. If someone on the plane drops it or breaks it, then they do have to cover the costs of repair or replacement. But, they know that and are generally really careful.

You want to remove anything on the chair that is removable. Is it a power wheelchair? If so, you will want to disconnect anything that can be broken off (like the headrest, arm rests, anything really).

When Rachel flies she takes off the joystick (just disconnects it), headrest, arm rests, seat and just sends the shell of the chair down to the bottom of the plane and we put the rest of the things in the plane with us. It works really well. She travels a LOT with her chair and has it broken only once and the airline took care of it as soon as possible.

 

[darthspud]

I second taking everything off the chair... bring a large tote bag to put everything in and then either under the seat or over head

 

[daughtersrus]

Thanks for all of the suggestions. MAW did arrange for a torso harness for the plane rides but we still need to bring DD's carseat with us to use in the rental mini-van. We thought about bringing a cheap seat with us instead but they just dont' have enough padding for DD, especially when she'll be wearing thin summer clothes. Last summer we tried one for a 3 hour trip to our lake house and she had two sores on her spine by the time that we got there.

DD's wheelchair is not power. We're going to leave her headrest at home (only needs it for the school bus). Should we take her foot rests off or just fold them? Other than those two items, the only other thing that comes off of the chair is the seat cusion. Again, renting a cheaper one wouldn't work as DD needs the custome "foam in place" back and the support that her chair gives her.

The flight that I'm most worried about is the one home from Hawaii. The flight is almost 8 hours long. It woudn't be too bad if she just wets her diaper but if she has a BM, I'm not sure what we'll do. DD does not put any weight on her legs at all so leaning her isn't an option. She also has some hip problems (sublexing) so we have to lay her flat inorder to be able to move her legs the way that they need to be moved. On the way there, we have to change planes in San Fransisco so if need be, we'll change her there.

Thanks for all of the links. I've sent an email to the TSA because I read something on their site about them needing to touch a prosthesis and test it for explosive residue. I'm assuming that they mean prosthetic limbs but DD has a prosthetic scleral shell that covers her right eye that was damaged. Their website said not to offer to take it out but there's no way that I'll let them touch it or test it while it's in DD's eye! Hopefully I'll get a response to the email soon.

Maybe we should have opted for a trip to Disney were we could have driven instead of a long flight to Hawaii.

 

[peemagg]

I know the bathrooms are small, but maybe there would be a way to lay her down and change her on the floor with a pad of some sort and someone holding the door open and using a blanket or sheet to hold for privacy? I'm just kind of brainstorming here, so I don't know if it would work. If you used a bathroom towards the back of the plane, it would limit the number of prying eyes.

 

[SueM in MN]

For the wheelchair, I would remove anything that is not securely fastened on.
If the seat cushion is velcro'd on, I eould remove it. If it or the footrests have latches that could open , I would remove them and not take the chance of them unlatching.

My rule of thumb is that anything that is bolted or screwed onto a manual wheelchair can stay on (we do check all bolts and screws before and after the plane ride. All the jostling on the plane can loosen things.

For prosthetics, they are talking about big things like prosthetic limbs - people have smuggled stuff in hollowed out places in legs and things. They probably won't even notice the prosthetic your child has

 

[NotUrsula]

It appears that there MIGHT be an exception to the FAA-approval requirement for carseat approval *if* the person cannot support body weight to sit up:

(2) This paragraph does not apply to seats on which cargo or persons who
are unable to sit erect for a medical reason are carried in accordance with
procedures in the certificate holder’s manual if the seat back does not obstruct
any passenger’s access to the aisle or to any emergency exit.​

That is from 14 CFR 121.311; the US law on using carseats aboard commercial aircraft. It is not particularly straightforward, but it appears to allow the airline to make the decision if there is a medical issue about being able to sit up unassisted. Have you spoken directly with a representative of United's Medical office? (NOT the baggage people.)

If she needs the special carseat it might be approved by the airline as a medical seating support device rather than a child restraint system. I would think that they would need very complete measurements and a photograph before they could decide whether or not it could be used onboard. This is going to be a very long flight for someone who is prone to pressure sores, so I think you can make a case for the seat being considered for a medical exception.

You might want to also ask some questions in two places over on FlyerTalk.com. There is a "disability travel" board, and a United board. I suspect that if you asked nicely and supplied the flight number, one of the UAL frequent fliers on the United board would be willing to take photos of the accessible lavatory that is on the widebody aircraft that would take you from SFO to Hawaii. (On an 8 hour flight it's unlikely that you'll manage not to have to toilet her at all; best to be as prepared as possible.)

 

[WheeledTraveler]

You've said you have a little over an hour for your layover. Is there anyway your MAW chapter can change flights so you have a longer layover? That's not very long if you consider that I've spend 20-30 minutes waiting for my wheelchair when getting off a flight and airlines like to preboard anyone who uses a wheelchair and/or might take extra time. I won't allow less than 90 minutes in the US and 2 hours if it's international because of the fact that as a wheelchair user I'm always the first on and last off. The only time I've not done that I was traveling with my parents and boarding on the second flight had started boarding by the time we got there. (And that's with no stops at all between gates) I hate to be alarmist, but I'd be worried that that layover is too short, especially if you're hoping to have that time to change her.