I am reposting this blog post I wrote a few years ago on a different blog...
So we just took our first airplane trip with Ellie and with our family. Here are the things we did, or the lessons we learned. I hope it makes sense...it was a lot of stuff.
A little about Ellie...she is 10 years old. She has no trunk control and no head/neck control. She is the size of a normal 10 year old. 4 ft 6 in tall and 63 pounds. She uses a wheelchair and briefs. In her wheelchair she uses a body brace to help support her trunk.
We sacrificed and paid for an extra ticket for another adult to come and help us with Ellie. This was a huge help. We have 3 other kids to worry about, so there were 7 of us total. 3 adults and 4 kids (1 of which was Ellie). We also paid $16 extra per ticket on priceline to be able to get a refund on our ticket if we had to cancel. We felt like you just never know when Ellie will get sick and not be able to go.
Tip #1) Arrange your seats together if at all possible. If not, we always made sure to have 3 seats together (Ellie, Mom and respite worker). Then Dad could be in charge of the other kids.
We had the back row (by the bathrooms every time). This was good and bad. Bad because we were right over the wings and engine so it was noisy and had no view, was right by the bathrooms, you had to carry all of your stuff and Ellie all the way to the back of the plane and your seats did not recline much. The only good part was Ellie had 2 messy diapers, so I was glad we were by the bathrooms so we could blame the smell on that and it also felt like we had more privacy. Still...I think on future trips...Tip #2)I would not want the last row. I would want the seats to recline, I would want to be as close to the front as possible because it is really a pain getting everything and everyone to the back of the plane. But if you decide to use the CARES device listed below, you will have to be in the last row or in front of the bulkhead (no-one behind you).
Tip #3) You can't be on an exit row
Carseats and special positioning seats have to be next to a window so tip #4) make sure you have window seats for your kids using carseats and your special needs kids. For your other kids...booster seats are not allowed. Forward facing carseats are allowed if they say in red letters "approved for airline use". Which, every 5 point regular (not special needs) carseat I saw said that. But you also need to tip #5) check with the airline on the width of the seats on the plane you will be on to see if your carseat or positioning seat will fit. On our plane the seats were 17.44 inches wide. We also thought if the special positioning seat was just a little wider than 17.44 we could have put one of her smaller siblings next to her and left the armrest up. Regular carseats for kids can be strapped into the airplane seat, but the special positioning seats cannot (unless if says approved for airline use in red letters).
We flew American Airlines and they gave us grief. They have a special department to help people with special needs. (I believe each airline is required to have a similar department) I emailed the special department and called and left a message to discuss our needs. I waited several days and did not hear back. I called the regular customer service and told them, they said they only call you 48 hours before your flight. This is ridiculous because they say that it takes a week to have machines approved that you are going to be using in flight, plus I needed to possibly order things off the internet and get Dr.'s prescriptions for using the oxygen, etc, etc. I explained this to them and they said someone would call me in the next 48 hours. No one did. I called back again and they were able to connect me with their special care department. So tip #6) contact their special needs department (if they have one) a few weeks before your flight (maybe 2-3). Tip #7) Have all of your questions written down because they are hard to get a hold of.
Tip #8) Before calling...make a list of all medical equipment you will be bringing and which you will be using in-flight.
Here are some of the things I discussed with them
Tip #9) I had heard that medical equipment flies free (by law on all airlines)---TRUE. You each get 1 carry-on and 1 personal item (backpack, laptop case, etc.) per person. Plus the medical equipment flies free with no limit to the number of carry-on size bags filled with medical equipment.
Tip #10) Medical equipment that you are going to use in flight...the specific device needs to be approved by their people. You give them the make and model and they check on it...this can take a week.
Tip #11) You can (and they encourage you) keep all of you medical equipment with you in carry-on's. (You don't want it getting lost, or thrown around in the bottom of the plane).
Tip #12) Talk to them about oxygen use in-flight (if your child uses o2). Some airlines allow you to hook into their supply, or there are special airline approved concentrators. No compressed tanks are allowed on the plane at all. (I will talk about O2 down below).
Tip # 13) Set up your seating the way you want. seatguru.com has all airlines and planes listed. So if you ask which type of plane you will be on...you can go to the seatguru website and see which seats have legroom, power ports, good views, recline, etc...
Tip # 14) Some seats on some planes have power ports (plugs, that you could plug machines and things into).
The airline doesn't look in your luggage at all...so they don't care what medications, supplies, etc..you bring. If you make it through security you are golden.
Tip #15) We were unable to use her special carseat in-flight...not FAA approved and too wide for the seats anyway. But we gate-checked her carseat. I couldn't risk not having it when we got to our destination. I couldn't run to Wally-world and pick up a new one. We also gate-checked her wheelchair. (They want to know if it is power or manual and if it folds down). Ellie's is manual and does not fold down. If it is a power wheelchair...there are certain types of batteries that are allowed and ones that are not...I don't know the specifics on this. Gate-checking carseats, wheelchairs and strollers is also free.
Tip #16) Oxygen in flight use, or for when you arrive at destination. First call your homecare company, see which models of FAA approved concentrators you can use. Find out if they need a new prescription from the Dr. for you to have it (mine didn't). Reserve it for the dates you need. Call back the week before the trip and double check your reservation. Call and let the airline know a few weeks ahead of time you will be needed oxygen in-flight. They want to know the model you will be using and your liter flow. Don't just say a high flow to be safe. Because you have to have 150% flight time of battery life. So for our 6 hour flight we had to have 9 hours of battery. (Although no-one actually checked this at the airport...they asked, but did not check). You will have to get a prescription for using oxygen in flight faxed to the airline. It needs to include diagnosis, liter flow and type of concentrator. Compressed O2 tanks are not allowed. Ellie only needs o2 while sleeping, but I wanted to be prepared in case she went to sleep. (She goes to sleep with over-stimulation and plus we had to get up at 2:30 AM to catch our flight). And she did go to sleep, so I was glad I was prepared. Make sure to bring a nasal canula along. Some airlines allow you to connect in to their O2 in-flight...mine did not. Even though the Dr. had faxed the airline the prescription, they still asked to see it when checking in.
Tip # 17) Golf carts---you cannot arrange beforehand. Some airports have them and some do not. Tell your flight attendants near the end of your flight that you would like one, and then tell the gate agent when you get off the plane. If they don't have golf carts, see if they have wheely carts you can use, or people that can help you with all of your luggage.
That is the end of things I discussed with the airline.
Tip #18) Can you ship any medical supplies ahead by mail? We shipped 6 boxes ahead with diapers, syringes, chux, feeding pump bags, alcohol wipes, saline bullets, suction cathedars, formula, etc...etc... Anything you have extra of and can do without for a few days. Tip #19) If you are doing this, arrange with the hotel before hand so they know to expect it. Also...find out where it will be stored, so that one clerk doesn't put it somewhere and then another clerk can't find it.
Tip #19) Positioning. How to position Ellie in the seat was the biggest headache...but I think I have several options figured out for any future travelers...
First she already had a body brace that she uses anytime she sits up. So we knew she would be using that.
2nd we tried getting her carseat approved, but it doesn't say "Approved for airline use" in red plus it is too wide to fit in the seat. (The airline also said that she couldn't use it because she was over 2 years old and over 40 pounds...but this is completely not true...I found a fantastic lady at the FAA that was a TON of help, her email is below). If your carseat fits and said "approved for airline use" in red and it fit in the seat...you could use it no matter what age or size of child. The child has to fit within the specified sizes that the carseat is made for also. You would be able to strap it into the airline seat (with no straps behind back of seat) and then strap child into the carseat. A possibility would be to get 2 seats or go 1st class (you would have to pay for either) if the only problem is that it is too wide.
3rd I found a device called CARES. It straps behind the seat and holds a person up. It is 1 pound and can be shoved in a small bag. It is the only FAA approved straps and can be used on any United States of America airlines. We thought we could use that along with her body brace. (The airline told me no...but the FAA lady said I could with an exemption from the FAA.) The device is only FAA approved to 44 pounds, but you can fill out a special form and get an exemption from the FAA. The exemption takes a month to get, but you only have to do it once. The CARES for kids over 44 pounds has to be used with no-one sitting behind them (so basically the last row of the plane). Here is their website
http://kidsflysafe.com/ . Here is the info on their website about special needs and the exemption
http://kidsflysafe.com/instructions/cares-for-special-needs-flyers/. If you don't get your exemption letter in time...you can still use CARES during flight, just not during take-off and landing. They sell for about $80 new. You can rent them for a month for about $25. There are individual websites, or rental people on ebay. We decided against it because the CARES is actually made for people with mild to moderate disabilities. I think it would have worked along with her body brace. But then we found option number 4.
This is the lady at the FAA who helped with all of these problems...
nancy.l.claussen@faa.gov. SHE WAS AWESOME. She responded to each email by the next business day. Knew what she was talking about and could send me the FAA regulations, etc...etc...
Nancy Lauck Claussen
Federal Aviation Administration
Air Transportation Division, AFS-200
nancy.l.claussen@faa.gov
202.267.9991(Washington, D.C.)
602-379-4864 Ex 268 (Phoenix CMO)
4th The FAA allows Orthotic Positioning Devices to be used in-flight during all phases of flight (take-off landing and in flight). The problem was...the airline couldn't tell me what one was...they said to contact my Dr. or homecare company. Neither one knew anything about it. Well guess what...it can be a body brace, or a DRUMROLL PLEASE...Tumbleform or special tomato seat. Can you believe it? So just call your tumbleform an "ORTHOTIC POSITIONING DEVICE" and you are good to go. You CANNOT strap it to the seat, it is used for positioning only. So the person still has to use the airline seatbelt to secure them. But this is what we used along with her body brace and it worked great. Honestly...if you're going to crash, you're going to die anyway.
The 5th option we came up with was to sit in a seat that reclines (to help her lay down instead of sitting up). You would still have to be sitting up for take-off and landing however).
Something interesting to know is that airlines are not required to ADA rules...I know...weird huh. However, they have their own set of rules for people with disabilities. If you have problems, each airline is required to have a CRO "Complaint Resolution Officer", so you can file a complaint with them. Also, when I was having so many problems, I filed a complaint with the aviation consumer protection and enforcement under disability and discrimination complaint here
http://airconsumer.ost.dot.gov/CP_DisabilityandDiscrimination.htm .
We had 27 pieces of carry-on luggage. (Plus remember we had already shipped 6 boxes). We each had a carry-on size suitcase (so that's 7). Plus 1 personal item (that's 7 more). Plus 2 carseats (we're up to 16). Plus Ellie's tumbleform (17). Umbrella stroller (18). Wheelchair (19). Oxygen concentrator plus batteries in a bag (that was 2 more---so 21). A cooler bag with liquid formula for the day and liquid medications (22). And the rest were all medical supplies (5 more). She has bi-pap and humidifier, suction, apnea monitor, pulse oximeter, vibrating vest, nebulizer, sun shades, electric blanket, meds, syringes, g-tube replacement kit, blood sugar stuff, gloves, briefs, chux, etc, etc...So we were really a sight to see. Tip #20) Put some things in rolling bags and some things in duffles to go on top of rolling bags...that way one person can carry more things rather than if everything is in rolling bags...that was a mistake we made. Tip #21) Checking clothes. The airline was begging us "isn't there anything you can check?" So they let us check all of our clothes for free (remember we each had only 1 carry-on for clothes. So technically we could have carried them on. But they allowed us to check them for free because they needed the overhead bin space.
Tip #22) Pack smart. While packing...group things into several different categories and keep them together in the same suitcases.
Group #1) Things that you will need in flight or in airport. So I knew I would need O2 and batteries, pulse ox, briefs, wipes, chux, 2 spare changes of clothes, warm blanket, flat sheet (I will discuss in a minute), meds, large empty ziplocs for wet/dirty diapers/clothes, etc... So all of these things went into 1 suitcase so I knew where they were.
Group #2) Medical equipment and supplies...I wanted to keep it with me (and they encourage it). These were in carry-on size bags and stayed with us in the overhead bins.
Group #3) Gate check items. Carseats, wheelchairs, strollers
Group #4) Can be checked to final destination. Clothes.
So keep the separate categories in separate bags.
You can imagine we didn't have this many carry-on bags. So tip #23) we posted on facebook that we needed to borrow some carry-on size suitcases and had no problems finding enough. I made up little slips of paper that had our name and contact info and then said borrowed from _______. I would fill in the blank with who we borrowed the suitcase from so we could return it. I placed these slips of paper where you slip your name into the suitcase.
Tip #24) I bought a bunch of yellow ribbon and then a bunch of different colored ribbons. So everything we took had a yellow ribbon on it. That meant it was part of our family's stuff. Then each suitcase had a different colored ribbon on it (in addition to yellow). Then I made a Tip # 25) master list of each color of ribbon and what was in that suitcase. So it would read something like this...
Light pink: sunshade, braces, small medical supplies, power strip
Blue: vibrating vest
White: oxygen (2 pieces)
Red: Briefs, o2 canula, chux, wipes, change of clothes, liquids
Bright Pink: Apnea, pulse ox, bi-pap masks
Green: Suction, Bi-pap
Purple bag: Electric balnket
Purple ribbon: nebulizer, neck pillows, warm blanket
Formula cooler backpack
Feeding pump
Meds
wheelchair
umbrella stroller
neck pillows
Ellie tumbleform
3 YO carseat
Ellie carseat
Mom personal item
Dad personal item
ETC...ETC...
Everytime we moved (so getting out of the car, getting through security, going onto plane, getting off plane, etc...) I would tip #26) pull out the list and we would go through each item. I would call out "light pink" everyone would look around and when we found it we would say"check". Then I would say "blue", "check". It worked really well and the kids had fun helping with it. I not only listed the different ribbon-colored suitcases but any stand alone items...such as wheelchair, feeding pump, Ellie's carseat, other carseat, tumbleform, Mom's carry-on, Dad's carry-on, etc, etc. So we went through each item we were supposed to have.
Tip #27) Keep the list in a small flexible 3 prong folder. Also put any other papers you will need inside. List of luggage, Airline tickets, O2 prescription, maps, contact numbers, etc... 1 person is in charge of this folder at all times. For us it was me. Then you never have to say..."who has the folder?".
Tip # 28) Medical summary. I have a medical summary that I have typed up on my computer and keep updated as much as I can. I print it off for each Dr. appointment and it is a lifesaver. I of course brought a copy with us and put it in the binder as well. It includes, Current meds (name, concentration, dose, way of administering, time given, reason for giving...I don't but you could also include side-effects, date started and date of last dose change.), Diagnosis (including brief lay-mans explanation of what it is and date diagnosed with), Feeding plan or formula with way of mixing and way of administering,Hospitalizations and surgeries dates, locations, diagnosis or procedure performed, what did they do to fix it. Allergies. List of upcoming appointments.
Tip #29) We didn't do this...but I think it would have been a good idea...each able bodied person (including children) are assigned to a certain color of bag. So person A you do green and blue. Person B you do purple and light pink, etc...based on their capabilities. We just had SOOOOO much luggage we couldn't carry it all by ourselves...we had to have a cart and/or airport personnel help us.
Tip # 30) How to change a brief (diaper) on a large person in the airplane. We had to do this 3 times out of 4 flights (once she peed through her clothes and everything, and 2 were BM's...so here's what we did. Remember how I got 3 seats together (Ellie, respite worker and Mom)? We pulled Ellie out of her seat. I sat in the middle of the 3 seats and spread my legs wide, this supported her torso and bum. THe respite worker had to stand up. Ellie's head was either resting on the tumbleform or my respite worker was standing in the aisle supporting her head in midair. I placed a chux under her. I placed a flat sheet over Ellie (We bring one with us when we are going to be out and away from the car for a long period of time, then you can lay her on a table or on the grass and change her under it for privacy). Wet diapers I can do under the sheet without looking. BM's I have to go under the sheet with her so I can see what I am doing. Then we placed the wet and or poopy things in ziplocs and zipped them up and carried them out with us. Tip # 31) It would probably be a good idea to line the seat under the person with chux so if they wet through. We didn't and thankfully it worked out.
Tip # 32) How to change a brief/diaper in the airport. I called each of the airports and asked them about accommodations (larger counters, first aid stations that you can use the cot, etc...). Out of the 3 airports we went to they all had family/handicap restrooms. None had first aid stations. 1 had 3.5 ft long counters. 1 said they had cots for when people got stranded overnight so we could request one and take it in the family restroom. (We didn't have time...but it was nice to offer). Otherwise you're stuck with throwing a sheet or blanket on the floor or chairs or table and putting a sheet over the top of them. If the germs bother you (putting the sheet on the floor) then bring several flat sheets and bring grocery bags to put the "dirty" ones in.
Tip #33) TSA
It lists anything you can think of. Wheelchairs, liquids, syringes, implanted devices, medical equipment, etc...Basically anything is admissible except compressed oxygen.
I made a list of all the things I thought they might have problems with (needles, applejuice for blood sugar, liquid formula, powdered formula, machines, implanted devices, liquid meds, creams, etc) and I called them to get all of my questions answered. TSA Cares 1-855-787-2227. They were really nice and helpful. I asked if I would need a Dr. prescription for any of the items I asked them about. They said I could bring one if I wanted, but did not have to.
Anything I asked about they said it was fine just to let the TSA agent know. But it was really no big deal. I didn't tell them what was in any suitcases...they just sent it through and if they questioned it they opened it up.
They say that they can send a special agent to help you through, you just have to call and request it 72 hours before your flight. I called, and the agent said someone would be calling me back...but they never did. It was fine without them. All of the TSA agents were really helpful and nice and put everything aside to help us. You don't have to wait in line, they have a special handicap line that you skip right to the front of the line.
The handicap person does not need to go through the scanners. They walk on through. Then they swab their hands and their chair. They test it for explosives and drugs. They are trying not to do pat downs on kids under 12. So they just have to call their supervisor and get approval. On the way home, the wheelchair tested positive for something, so Jason had to get patted down instead of Ellie. It didn't make any sense...there were 3 adults with her, just because he happened to be with her he got patted down, but me and the respite worker didn't have to.
The special needs person, does not need to get out of their chair.
Ellie has several implanted devices...shunt, Vagel Nerve Stimulator, Baclofen Pump and G-tube. The Baclofen pump can set off security, but the others will not. I brought a Dr.'s note saying she had them, even though TSA said we didn't need a note and we ended up not needing it. I still brought it. But I probably wouldn't next time.
We had a huge thing (3/4 gallon) of liquid formula, no problem.
Syringes and needles, no problem
Medications including liquid, controlled substances, OTC, prescription, no problem
Lots of machines, some they had to swab and test, no problem
Implanted devices, no problem
Creams including electrode gel, ben-gay, KY, no problem (these were full-size tubes)
A bottle of water for meds, They asked what it was for...I told them, no problem
Applejuice for hypoglycemia, They asked what it was for...I told them, no problem
Tip # 34) I did put all of my liquids together in 1 bag, so that perhaps they wouldn't have to open up every single bag. The things they questioned were the water, the apple juice and the ben-gay. But as soon as we said why we needed them, they let them through.
Tip #35) I read somewhere that ice packs had to be at least 2/3 frozen or something like that...so I made sure to only include fully frozen icepacks with her formula and refrigerated meds.
Tip #36) Put your liquid formula in containers with screw-tops, not pop on tops...our spilled on the plane. Plus then it doesn't need to be standing upright.
Tip # 37) Kids 12 and under do not have to remove their shoes going through security.
Tip #38) Extra time. It did take extra time to check in and to get through TSA. I would say arrive at airport 2- 2.5 hours before departure time. And check to see if time listed is departure time or loading time...sometimes it's one and sometimes it's another.
Tip #39) Don't be afraid to ask for help. We asked more than once..."Do you have a cart we could use or a person that could help us?" Most people genuinely tried to help.
Tip #40) Use the sky-cap. They will help you unload your luggage and put it on a cart for you. You are supposed to tip them, so bring some cash for this. But it was a big help. Both times going through security TSA let us bring the skycap cart all the way to the gate for all of our luggage.
Tip # 41) Renting a car. They rent vans with lifts and tiedowns...but they are pricey. You could do an SUV that you could put the wheelchair into the back of and your special needs child could ride in their special carseat. We talked about renting a van with a hitch and renting a small uhaul to put the wheelchair in. (Which is basically what we did except that we borrowed it from family). You could possibly even just rent a moving van, they have ones with larger cabs to fit more people. If you had a stroller like a MacClaren or other collapsible chair and could get by without your wheelchair it might be a lot easier...we don't have one. Remember to bring your hanging handicap tag for your vehicle.
Tip # 42) Bath chair. While on vacation you won't have your bath chair. I debated bringing it. I'm sure you technically could. But here is what we did. One adult wears their swimming suit and sits down in the tub. Then place the naked child in the tub. The person in the swimming suit is acting as the bath chair. Then another adult washes the special needs child. Then both people help to lift the child up and out of the tub.
Tip # 43) Stretch. Try to allow child to lay down and stretch before you get on plane and change brief before you get on plane. On plane once in air lay child across you and your respite workers laps to allow them to stretch. Make sure you get them buckled back up before preparing for landing.
Tip #44) Warmth. Ellie gets really cold really easy. So I made sure she was wearing sweat pants and sweatshirt and we brought her really warm blanket on the plane. They keep the planes pretty cool. Layers are good, then you can always take them off or add them on. I almost checked her electric blanket, but I'm glad we didn't because we ended up needing it between flights in the airport.
Tip #45) Awake. This probably only applies to us...but Ellie has sleepy days or awake days. There is no pattern or predicting why or when they will happen. We have recently started her on ritalin which will wake her up. She can have 1 in the morning and 1 4 hours later if needed. So we gave her one when we got up and both flights we had to give her another. So we needed to have it handy. (She drops her o2 when asleep, so we needed her awake).
Tip #46) Aisle chair. A lot of airlines have a device called an aisle chair. It is a super skinny wheelchair that fits down their airplane aisles. I thought it was going to be stupid and she would just fall out of it. It had lots of straps so she couldn't possibly fall out of it. It was actually very helpful. There is no head support. We just had someone walk along and help hold up her head, or let it flop to the side. But you could use a neck pillow if that would be helpful.
Tip # 47) Timing of meds. I try to be really strict about the time that Ellie gets her meds...am I perfect?...no...but I try. So instead of giving them at 2:30 in the morning (when we woke up) I brought them with us and gave them at 7:00 AM her normal med time. Then it didn't mess up night meds and I wasn't giving 2 doses too close together.
Tip #48) Hydration. I didn't do very well on this trip...but normally Ellie spends more time in the sun than usual. So I try to give her some extra pedialyte or gatorade to keep her electrolytes stable. We just drink more water, but she can't tell me when she is thirsty.
Tip # 49) Keep most used suitcase closest to you. The suitcase with the briefs and chux that you are going to use most, keep in the closest overhead bin that way you're not bugging other people in the plane.
Tip # 50) In airplane keep luggage all together in a few overhead bins.
Tip #51) Gate attendant. When you get to the gate tell attendant that you have someone with special needs in a wheelchair and you have a whole grundle of luggage, make sure to tell them it is all medical equipment. They won't believe you, but they don't check in your suitcases either. You will be the first to load get onto the plane (for us it was 35 minutes before departure and normal passengers started at 30 minutes before departure). You will also be the last to leave the plane. Tell them you want the aisle chair. Then ask for a golf cart or some help with your luggage.
Tip # 52) Adult distribution at security. Send one adult through security first they will be collecting the bags. Send another adult through security, then they will take special needs child through security and sit with them while they swab special needs child and get permission not to pat down. 3rd adult will be sending all of the luggage through security and keeping people from butting in (see below).
Tip #53) People butting at TSA. In SLC airport the handicap TSA line and the flight attendants/pilots is the same line. They kept butting in line. I have these 27 things to send through security and flight attendants and pilots kept stepping in. Ask them politely to let you finish because you have someone else waiting on the other side picking luggage up and you don't want it to get confused. Or ask TSA if they can butt into another line.
Tip #54) At some point you have to send the other kids through security. You could split them up between the 3 adults, or have them with the adult with the special needs child.
Tip # 55) You need at least an hour and a half between flights if you have a connecting flight. You have to have everyone go to the bathroom, eat, have special needs child get out and stretch. You will be last off the plane so that takes time. You have to wait for a golf cart (if available). It all take time.
Tip #56) If they don't have carts available for you to use. You can rent carts. You could ask for an employee to help you. You could ask if you could pile things in a wheelchair. And if worse came to worse...drag you luggage ahead 200 feet leave someone there to guard it, go back to where someone is guarding you other luggage. Drag some more luggage ahead 200 feet and repeat until you get where you are going.
Tip #57) Snacks. Bring snacks to eat on the plane. This keeps the kids and parents happy. Beef jerky, crackers, oranges, hard candy, gum, trail mix, etc...Something a little filling healthy and not just total crap.
Tip #58) Vacation over-ride. I called insurance and medicaid (we have both on Ellie) about what if it was too soon to refill meds before we left. They said you just call them and ask for a vacation over-ride. It takes a few hours, but then you can refill your meds early. I asked what is something happened and we needed to fill prescriptions on vacation. They said the big pharmacies like walmart, walgreens, etc...were best. I did get a written copy of each of her prescriptions form her Dr. to take with us. But the Dr. said they might not be accepted in some states because it was an out of state prescription.
Tip #59) Hospitals and clinics. I called my insurance and medicaid about if we needed to go to a Dr., or urgent care, or hospital, or children's hospital while on vacation which were preferred. Insurance gave me a list. Medicaid said it didn't matter since it was all out-of-network and they were secondary anyway, it didn't matter to them. I took the list with me, just in case, so I would know where to go.
Tip # 60) Housing. Look around for what you need...minimal or no stairs, air conditioning, fridge, freezer, pool, tub, etc... Hotels that have a handicap room are usually just 1 bed because they have left more space around the bed and everything. so they are nice because they have extra space...but bad because there is not another bed for the child with disabilities or other kids. We usually just cram into a regular room, not a handicap room. Think about adjoining rooms (with a door in between). Or renting a condo.
Tip #60) Stay positive and nice. You will probably get some questioning looks, some grumbling employees and things are not going to work out exactly as planned. It's OK.
This might be kind of boring...sorry...but the rest of this post are the emails I got back from Nancy with the FAA regarding all of the seating situation...The documents she referenced are PDF's I can't figure out how to attach them here...but I would be happy to forward them to you if you need help..or you could email Nancy...she was wonderful.
Mikael-
I responded to your second message before I saw this message. To answer your questions....if you want to use CARES, you need an exemption to the regulations. If you have an exemption from the regulations, then there is nothing to prevent American Airlines from allowing your child to use CARES.
If your child exceeds the weight limit (44 pounds) for CAReS, the regulations prohibit the use of CAReS during taxi, takeoff and landing on US Aircraft. because your child is within the weight limit for use of the CAReS (22-44 pounds), you may use the CAReS on aircraft without any additional documentation. Even if your child ever exceeds 44 pounds, you can use the CAReS CRS anytime except for taxi, take off and landing (which means there is no regulation that prohibits its use during cruise flight) without getting an exemption from the regulations.
If you want to use CARes during all phases of flight (including taxi, take off and landing) and your child exceeds the weight limits, the following URL has great instructions on how to submit a petition for exemption and a template that you can use-
http://www.kidsflysafe.com/how-to-use-cares/cares-for-special-needs-kids
I have also attached an example of a grant of exemption.
The process typically takes about a month.
You may also wish to think about using an FAA Approved CRS (child restraint system---AKA carseat) that can accommodate a larger child. That way you won't have to apply for an exemption. The FAA does not recommend any particular CRS....but here are some websites where you can find CRS's (approved for use in automobiles and aircraft) that can be used with children up to 105 pounds. The FAA considers anyone who has not reached their 18th birthday to be a child for the purpose of our regulations regarding CRS...so your child could use a CRS that accommodates their weight on any US airline until they turn 18. I have attached a legal interpretation that supports this FAA position.
Columbia Medical--http://www.columbiamedical.com
1-562-282-0244
( TheraPedic Positioning Vehicle Restraint System- Child Car Seat 2000-- Two sizes available, accommodating users weighing between 20-130 lbs and up to 5 feet six inches- Approved for use in Aircraft)
Carrie Tumbleforms--(Adaptive Mall- http://www.adaptivemall.com--1-800-371-2778) ( Elementary Carrie Seat 4641M--For children up to 60 lbs--Approved for use in Aircraft)
Brittax--http://www.britaxusa.com (Phone- 1-888-427-4829) (High Capacity Convertibles- Up to 65 lbs- Models: Marathon, Marathon CS, Decathlon, Boulevard, Boulevard CS, Advocate CS--Are all approved for use on aircraft)
I have also attached an FAA Advisory Circular that contains more information regarding the use of child restraint on aircraft.
Best Regards,
Nancy
Another email from her...
Hi-
I just listened to your voicemail again. I wanted to clarify the following. I am not a lawyer, but this is how I understand the regulations---
If you have an FAA approved Child Restraint (like the kind in the list below) and you child is within manufacturer weight limits and is under 18....no air carrier can prohibit you from using the FAA approved CRS. They would be in violation of 121.311(c)(2). (FAA Regulations). This is the easiest solution.
If you have a Child Restraint for which the FAA has granted you an exemption so it can be used on aircraft.....no air carrier can prohibit you from using the restraint. That would be a violation of DOT 382 Nondiscrimination on the Basis of Disability in Air Travel which requires air carrier to make reasonable accommodations for people with disabilities.
I would call American Airlines and ask to speak to a CRO (Complaint Resolution Official). This is someone that each airline is required to have on staff to resolve disability issues.
I have attached the Child Restraint regulation, as well as a URL to DOT 382.
http://airconsumer.ost.dot.gov/rules/Part%20382-2008.pdf
Best Regards,
Nancy
Another email from Nancy
Mikael-
It is illegal for an air carrier to prohibit the use of an FAA approved CRS if a ticket is purchased for the seat , the child is accompanied by a parent, the child fits securely in the CRS and the child fits within the manufacturer's weight limits. See the attached regulation and FAA Guidance document that addresses this issue.
(2) Except as required in paragraph (c)(1) of this section, no certificate holder may prohibit a child, if requested by the child's parent, guardian, or designated attendant, from occupying a child restraint system furnished by the child's parent, guardian, or designated attendant provided—
(i) The child holds a ticket for an approved seat or berth or such seat or berth is otherwise made available by the certificate holder for the child's use;
(ii) The requirements of paragraph (b)(2)(i) of this section are met; (Note- this requires the child to be accompanied by a parent or guardian)
(iii) The requirements of paragraph (b)(2)(iii) of this section are met; and (Note---this requires the CRS to be in an approved forward-facing seat, the child must be properly secured in the restraint system and must not exceed the specified weight limit for the restraint system, the CRS must bear the appropriate label(s))
(iv) The child restraint system has one or more of the labels described in paragraphs (b)(2)(ii)(A) through (b)(2)(ii)(C) of this section.
It may just be a communications issue. Typically airlines always try to do the right thing. I am happy to talk to whomever you are talking to at American and clarify the regulatory requirements.
Nancy
I emailed her the following question...
"I can't come up with a carseat that would fit her and is FAA approved and cost under $500-$800. So...
What is an orthotic positioning device? Can you give me an example. Would this count
http://www.adaptivemall.com/sosimotiweki3.html
(not the wooden part...just the seat.
The seat would not be attached to the airline seat. We would use the airline seatbelt to restrain her...the special tomato (link I sent) would just be to help hold her upright.
Mikael
Nancy's response
Mikael-
The OPD you describe (Special Tomato) and the use of that OPD meets the criteria in 3 (C) of the attached FAA guidance document. This document is inactive, but it still represents the current FAA guidance on this issue. This guidance is currently being incorporated into FAA Order 8900. As stated in this FAA guidance document, this positioning device may be used during all phases of flight by a person with disabilities in order to be positioned so the aircraft seatbelt can be used effectively as the primary method of restraint.
Air carriers are only required by FAA regulations to allow the use of FAA approved CRS on aircraft. Ultimately, an air carrier could deny the use of this positioning device and the air carrier would not be in non-compliance with FAA regulations. However, DOT 382 Nondoscrimination on the Basis of Disability in Air Travel generally requires air carriers to make reasonable accommodations for passengers with disabilities as long as it does not conflict with an FAA safety rule.
If your child uses this positioning device for all phases of flight as you describe, it does not conflict with an FAA safety rule (as clarified in the attached FAA guidance document).
Best Regards,
Nancy
Have you ever traveled with your child with disabilities? How did it go? what tips do you have for us? Comment below.
