airplane travel with disabled child

[goofyandmore]

Hi everyone and happy holidays! I have a 6 year old daughter who has tramatic brain injury from birth. She walks and looks fine, but doesn' speak and if someone might mistake her for an autistic child because of her sensory integration problems and behavorial issues that may come up depending upon the day. Are there any airlines that will give certain seating preferences or anything because of a disability? We made it ok when she traveled at 2 and 1/2 but now, I don't know if we will be disturbing the rest of the place with tantrums and screams or if she will be fine. Thanks, Carolyn

 

[goofyandmore]

bumping please

 

[SueM in MN]

Welcome to disABILITIES. It may take a while to get more answers because a lot of the people who post on this board are too busy to visit every day, but you should get some helpful answers. A number of posters have children with autism spectrum disorders. Since your DD has some similar issues, you should be able to gain from their experience.
Airlines do have to comply with the ADA, so it's really not preferencial treatment if they help you, just giving what you need to make your trip possible.
Each airline also has to have someone (often a special department) that deals with people with special needs. Most of the airlines do have a link to general special needs information on their websites. So, I guess, my first suggestion would be to look there. The reservation agent that you talk to on the phone may not know they have a special needs department, or may think it just applies to people with mobility disabilities, but the ADA applies to a lot more than that. If the person you talk to doesn't know, ask for a supervisor.
Many airlines will allow people with special needs to reserve seats before they allow the general public to do so. Also, ask at the gate (well before they start boarding) to preboard if you think it would be helpful to you. Some people (like us, because DD has physical disabilities as well as other problems) need to preboard. Some people find that it works better for them to board as late as possible so that they are not sitting in the plane for as long.
For choosing an airline, one of the things we look for for our situation is a non stop, direct flight. That might be best for some people, but others may find that it works better for them to have several shorter legs to their flight. If you need a direct flight, your options for which airline to choose might be limited.
Here's a phone number that might be helpful:
Hotline for Air Travelers with Disabilities:
(800) 778-4838 (voice)
(800) 455-9880 (TTY)
We haven't used it, but I found it in an article about federal offices of help to people with disabilities. It's a "real time" assistance number that you can call to help get assistance if you have trouble at the time of boarding.

 

[goofyandmore]

Wow, you certainly are knowledgeable! Thanks so much for the information. My husband doubts we can make the airplane trip since she usually hates to be confined. But I am hopeful it can be done somehow. We live in NJ, so if I recall, the flight is about 2 and 1/2 hours or less. THanks, Carolyn

 

[SueM in MN]

Originally posted by goofyandmore
Wow, you certainly are knowledgeable! Thanks so much for the information. My husband doubts we can make the airplane trip since she usually hates to be confined. But I am hopeful it can be done somehow. We live in NJ, so if I recall, the flight is about 2 and 1/2 hours or less. THanks, Carolyn

18 years of living with a child with multiple disabilities gives a wealth of information. I'm just glad it can be useful to someone else.
Here's a website that might be useful to you. I'm not sure if the webmistress is still keeping it up, but she has a lot of very good info that might be helpful.
I'm sure you will also get some other helpful replies.

 

[mbb]

everything Sue said

Life does get busy...as you well know!!

One more tip - ask for the bulkhead seat on the airplane...its the first row behind the wall of first class...and explain why you're requesting it...they usually hold them for travelers with infants or other med needs...it has a little more space, and no one directly in front - may help with the confined spaces issue...

Our sons have ASD/SID...we usually try to fly EARLY in the am...thye will usually sleep for most of the trip - and yes, we medicate with a decongestant so that their ears - hopefully!- won't bother them too much...check with your Dr. Feel free to pm anytime !!

 

[goofyandmore]

Mbb and Sue, thanks again. The seat recommendation is exactly the kind of thing that would make a big difference. I have two other children who have no issues. They are 14 and 10 year old boys who also love Disney World. I have thought about staying home with my daughter and having my husband go with the boys, but she had such a great time in 2001, although she was 3 then and it helped that I could keep her in a stroller much of the time. That is another issue. It is very hard to walk around with her anywhere whether it be outside some place or in a store because when she sees something that sensory appealing like even a paper cup, she will break away, scream, or just flop on the ground where it is and it is hard to get her back up. When she was 3 people didn't give a second look to see her in the stroller. But now, they will especially since she is very big. What do you all do? When your kids were around 6 were they well enough behaved to walk around Disney or did you use a stroller? I will have to get a bigger one because the umbrella stroller is getting too small.

Thanks again, it really helps to have people to talk to about this stuff. I really want to go to Disney and hope we can make it work out.

Thanks, Carolyn from NJ

 

[roadtripper]

Hi-
My friend's son (7) seems to have some of the same issues that you are describing, and she brought a kid kart type stroller for him on their last trip. She was thrilled that she did. Even though he is ambulatory, he did enjoy sitting in the stroller, especially when it was really sunny (it had an awning). Also, the kid kart strollers should be recognized by CMs, and should help you avoid waiting in lines for certain rides, which may help out. I would definitely suggest a Guest Assistance Pass to avoid any possible hassles with the line situation. I think her stroller was made by Leckey. My son is 7 and uses a w/c, and we still get a Guest Assistance pass just in case there are any problems. Thankfully, we've had few. Good luck!

 

[goofyandmore]

I will definitely look into that strollerl you mentioned. Every bit of info helps. Anything else anyone can think of, please let me know.

Does anyone know if any particular airline is better with accomdating for special needs? I usually go Continental but will call Delta, united and American. We fly out of Newark, NJ.

Thanks, Carolyn

 

[SueM in MN]

A lot of people have mentioned that their children did well with the WDW strollers. Except for the Studio which has jogging type strollers, the other parks have hard plastic strollers with sort of large sides and a canopy. The sort of thing where a child can feel sheltered. They have sizes of strollers at WDW that will fit up to a small 12 year old. You can see pcitures of the strollers on allears.com website.
If you want to look into getting your own stroller, check if your insurance will pay for it. They may since you have a special needs child who (even though she can walk) has need for a stroller above what the average child her age would.

 

[mbb]

I tried to get the link to www.allearsnet.com with the pics of strollers to work...it wouldn't but got to Deb's site...it has all the info you could ever want, and then some!!

We usually fly with whoever has the best seat sale
Granted, the larger airlines would be my first choice - just because there are less "surprises"...and less I have to worry about. Some of the Charters that fly from Cda. don't serve food, drinks etc., but those are all just convenience stuff. Flying with the larger airlines, for us, is just more familiar

Our kids do the "flop and kick Twist" too The best thing about WDW is that there is always another sensory distraction right around the corner!! I hope you're smiling at that because we just ignore the "why can't those parents control their children better" stares

The boys will be six, and we plan on getting strollers for them. They will walk some, but the comfort of that "shielded" feeling is a definite plus for them.

Funny, after rereading this post, it almost makes me wonder why we go at all...and then I remember...
"Mommy, look at all the Magics!!"

 

[goofyandmore]

I called Continental and Delta. Continental seemed more accomodating but said that they could only put 2 people in the bulkhead (sp?) since it is reserved for "elite passengers." So, thinking it over, it might help more if I have my husband with me if she acts up so, they offered us the 29th row. We also received a good rate from Delta Song, so we may be going with them and I will let you know what their response is. Thanks, carolyn

 

[jaysue]

I hope all goes well for your trip

thanks
jaysue

 

[SueM in MN]

Originally posted by mbb
I tried to get the link to www.allearsnet.com with the pics of strollers to work...it wouldn't but got to Deb's site...it has all the info you could ever want, and then some!!

When I posted about the stroller pictures, I wasn't on my regular computer (with a nice bunch of saved important info on my stickynotes). The site that you posted www.allearsnet.com is the one I meant and does get you to Deb's site. Some of the pages will let you post a link and get there and some won't. I think it depends on how they were saved on her website. Thanks for putting the correct link.

originally posted by goofyandmore
So, thinking it over, it might help more if I have my husband with me if she acts up so, they offered us the 29th row.

Depending on the plane, that might be the back row. There are advantages to that too. You are usually going to be close to the bathroom and you won't have anyone (or at least not many people) behind you.

 

[D L and K's Mom]

We are jsut back from our trip to Disney with our 13 year old special needs son. We flew DELTA. I requested seating in the first row (not first class) and was told they would try but could not guarntee it. When we recieved our tickets we were given 2 seats for all 4 "legs" of our trip in the front rows but....then they switched planes and departure times and our new tickets we were seated in the 42 row etc. I was told to go to the gate early and see what they could do there. The people were great and they changed the seats right at the gate. I would try to pre-arrange this before hand with the airlines. We brought a small portable DVD player with us this time and it was HEAVEN. DS watched a movie and he was so happy. I know it was expensive but...it was wonderful!!!!!! I had a terible time with DELTA however with the planes boarding and de-boardisn I will write more later as I have to go now. Let's just say they left DS chair out in the rain and didnt help me get him off the plane. We were parked outside the terminal and there was not a walkway we had to use stairs...no help...chair was soaked after DH carried DS (Over 100 lbs ) off plane in pouring rain,......I will write more later as I want to see if anyone else has had this problem in the past. Good luck

 

[SueM in MN]

I'm not sure what type of arrangement the airlines have for getting people with disabilities down steps if they are parked without the jetways. You would think they would have some arrangement though. We have always traveled with big planes that had jetways. The wheelchair also stayed in the jetway until just before loading, so we haven't had the probelms you did.
We have had some experiences where they did not call for pre-boarding, so we always make sure now that they know we wnat/need to preboard.

 

[D L and K's Mom]

We had a great flight from our "home" airport (Rochester NY ) to Atlanta. When we were getting off the flight we waited until everyone else was off since we had to wait for DS wheelchair and DD's stroller. It was pouring and I mean sheets of rain outside and there we were faced with steps!!! I was so surprised. The stewardess was of no help although I said ," Is there someone who can please help us". We had DS, DD (6months) and DD 12 along with diaper bags etc. The wheelchair and the stroller were both left....with no one there out in the pouring rain. Hubby had to carry DS down the steps (Over 100 lbs) put him in the chair, come back up get baby in car seat (we had bought her her own seat) put her in her stroller while DD and I walked down. I didnt feel comfortable carrying the baby in her seat as it was slippery. We ran to the building and there we were faced with 2 flights of cement steps!!! This is where I had my little Mommy breakdown.....yup..I lost it and started crying...I was so tired and this was just to much. Hubby sent DD(12) up the steps to go into the airport to get an employee to help but she came back and said there was no one there. So Hubby carried baby up the stairs adn DD followed, DD stayed with baby while hubby came back down to carry DS up while I dragged the chair up behind. It is heavy and I fell with it , cut up both my shins and twisted my ankle and knee...again tears on Mommy's face. As we were going up the stairs someone passed me I think it was one of the employees who was out on the runway but I can't be sure and said,"Wow that looks heavy". Again, I can;'t be sure it may have been another passsenger but I don't see how as we were the last ones off the plane. When we finally got into the airport we were wet and now cold as it is airconditioned. There was no one in the wing of the airport..it was late and all the gates were empty. We had to dash to catch our connection. I called the airlines the next day and had to talk to 3 people (all who were very nice) until I reached someone who could help me. All I wanted to do was to make sure this was not going to happen on the return trip home. WE had traveled through Atlanta but on the flight home we were going through Cinn Ohio. I was told they didnt know, sometimes gates change etc. I asked how they could do this as DS was in a chair and this is where she got very very nasty and said that they had no record of DS being handicapped on the the ticket WHAT?? I told her that I doubted that as I had made the phone arrangements myself and that the people on the Atlanta -Orlando flight were waiting to help etc. She said that they were just being curtious. She want on to say that they didnt have to worry about the baby as she was not a paying passenger...Ok now I was angry First the only mention of the baby that I had made was to say was that hubby had to carry her down to and stroller was soaked . I went on to say I had paid for a seat for her. I said I didnt feel that my son was treated with respect and that I felt that his safety was compromised. She told me it was X-mas eve and that it was busy and that there was nothing they could do. I asked to speak to a supervisor and she put me on hold and then came back on and said none were available but she could give me an address where I could write my complaints. I wrote it downa dn again asked if she could check to make sure this would not happen again adn she told me to call the airport directly as they have no idea as to the layout of different airports. Well I did call the airport and they gave me the airlines # and I spoke to someone there who assured me that it would not happen in Ohio...guess what it did. When we walked out to board the plane there it was again sitting 40 feet away from us with its steps down again in the pouring roain (our flight had been delayed for an hour due to loss of electricity fromt he storm) I almost fell over. These were not tiny planes. Granted they were probably only 75-100 seats but not small prop type planes. At least this time they did have someone there to help us. The nice young man tried to load DS chair on to this lift but it would not go on so he had to transfer him on to a skinny wheelcahir and push that on to the lift only troulbe being that the chair was soaked from being out in the rain and DS's behind got wet. DS started crying because fo this and the noise and being moved 3 times it was horrible. I do have to say the yojng man was so nice and he really tried his best but there was nothing he could do. We ended up getting hubby off the plane (he had gone ahead to put DD's on ) and he carried DS up the steps again. I can't believe it!!! I am definitly going to write a letter as I feel DS was not treated with respect and I felt all our safety was compromised. I will mention that most of the people on the second flight were very gracious and tried to help but that it really was a bad situation. Has anyone had this trouble before?? Any ideas as to what I should do. My legs are still all cut up and I am still sad to think of DS sitting there all wet with great big tears in his eyes and his hands clenched in fists in fear. DS is a special needs child and he really needs to feel safe. I really want to ask for our $ back for his ticket as he had a terrible exerience but they did get us to our destination. I just don't think anyone should have to go throught this kind of He** jsut to get on a flight. Sorry to vent here but I know you will all understand how it feels. I was so sad and hurt and then angry. I don't think I will ever use this airlines again which is to bad as it is very convient from our home airport.

 

[SueM in MN]

I have heard some bad travel stories before, but yours is the worst I have ever heard. It sounds like they were totally unprepared and didn't really care about it at all.
Here's a
link to the FAA Office of Civil Rights . It is the federal agency that is in charge of rights of air travelers with disabilities. Here's the address of the agency to send complaints to:
Department of Transportation
Aviation Consumer Protection Division, C-75
400 Seventh Street, S.W.
Washington, D.C. 20590
A few of the things that I saw on that site that pertain to your situation:

- 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 with disabilities must be provided information upon request concerning facilities and services available to them. When feasible this information will pertain to the specific aircraft scheduled for a specific flight. Such information includes:
* Any limitations which may be known to the carrier concerning the ability of the aircraft to accommodate an individual with a disability;
* The location of seats (if any) with movable aisle armrests and any seats which the carrier does not make available to an individual with a disability (e.g., exit rows);
* Any limitations on the availability of storage facilities in the cabin or in the cargo bay for mobility aids or other equipment commonly used by an individual with a disability;
* Whether the aircraft has an accessible lavatory.

- Airlines may not require passengers with disabilities to provide advance notice of their intent to travel or of their disability except as provided below. Nonetheless, letting the airline know in advance how they can help you will generally result in a smoother trip. (the "parts below" that they refer to didn't include any of the things you had)

-Boarding and Deplaning

Properly trained service personnel who are knowledgeable on how to assist individuals with a disability in boarding and exiting must be available if needed. Equipment used for assisting passengers must be kept in good working condition.

Boarding and exiting most medium and large-size jet aircraft is almost always by way of level boarding ramps or mobile lounges, which must be accessible. If ramps or mobile lounges are not used, a lifting device (other than a device used for freight) must be provided to assist persons with limited mobility safely on and off the aircraft.

For certain small aircraft, however, at present there are few suitable devices to assist persons with limited mobility in boarding and exiting. Lifting devices for smaller aircraft are now under development and will be put into place as soon as they become available.

They do have a few disclaimer items in there, such as, equipment may be substituted because of mechanical, etc. problems. There is also a disclaimer that says airports are in the process of getting equipment and accessibility of the terminal.
The thing that gets me is that the flight attendants knew when you got on that you had a person with a disability, so (knowing what the conditions were when and where you landed) it should have been the responsibility of the head FA to make sure your needs were met. They could have called ahead to make sure the gate agent had prepared for you. And, the wet wheelchair could have been easily prevented by them having some plastic to cover it with until just before your DS got into it.
Good luck. Let us know how it turns out.

 

[momof2inPA]

D and Ls Mom

How horrible. Your money back is not nearly enough in my opinion. I wonder if a newspaper would be interested in your story, because Delta is obviously not taking special needs seriously. My mother in law has flown USAir prop planes and had to walk down the steep steps, but there has always been a wheelchair escort waiting for her at the bottom. My guess is the holidays and rain made them a little short handed, but that is absolutely no excuse.

 

[mbb]

How awful!!

Let us know how this works out...