Should I try to get my child a wheelchair?

[SueM in MN]

I read another thread about the difficulties of getting through an airport with a wheelchair. That sounded horrible.

It's not that bad. If the person can walk thru the screener, they do that and the screening people check over the wheelchair without them in it. My DD can't get out of her wheelchair and we really don't think it's that bad. A little more time, but nothing major.

Also I don't want my daughter to have a self image that she is sick or disabled. My feet get tired so I ride in a wagon sounds much more kid friendly and less disabling than....I have a disease and need a wheelchair. How would you present a wheelchair to a child without giving them the stigma....it's kind of a major deal.

Shelly

For your trip, you might just want to use the WDW strollers. They are a firm plastic and you could take something along (maybe a beach towel) to pad it a bit. She can always get out and move around if she is getting stiff from sitting. If she's used to using a wagon at home, a park stroller would be several steps up in comfort compared to a wagon.


I've told people to think of a wheelchair like glasses. There should be no more stigma to using a wheelchair than there is to using glasses. Some people need glasses to see well. Some people need a wheelchair to move around well. Using a wheelchair doesn't mean you have a disease; it only means you need some assistance to get around.
My DD's wheelchair is not a sign of a disease, it's how she gets around and it's freedome to her.

 

[Who'syourMickey]

Thank you for sharing your positive perspectives on wheelchairs.

One thing I don't understand. How is someone who can not even cut their own food or brush their teeth and use a fork because their wrist hurts going to push themselves along in a wheelchair?? She can't even lift a glass cup. She can only lift a small plastic cup. Even if she used a wide range of motion, I still can't understand why a manual wheelchair would be best. Her feet work better than her wrists from what I can tell. It seems like she would be trading foot pain for wrist pain. I wouldn't be suprized if insurance wouldn't pay for an electric wheelchair for her though. She has a vision threatening eye disease as well which would open up a whole issue of low vision and a wheelchair that I can't even imagine but since I can't sleep I think I'll google that.

 

[dclfun]

I'm chiming in rather late and please forgive me because I read the other posts kind of quickly. To the OP...you mentioned that your daughter is 7 but can't tell you where it hurts. Is she nonverbal or mentally challenged thus cannot communicate about her pain? Depending on her mental acuity she might not be able to drive a power chair ( and also due to the visual issues you mentioned). You would be the one to push a manual chair for her. Even without arthritis I can't imagine any 7 year old having the stamina to push a w/c through WDW. If she's functioning at school now without a wagon or chair then for "home" she might not need one. I had a foster child who had transverse myelitis and AFO's ( short leg braces). He used a walker for school and home- we just had a large medical stroller for long distances that I pushed for him. Also OT/PT at school is based on a number of factors and your daughter may or may not qualify to be seen by the school therapist. She would need an evaluation first and then it would have to be on her IEP. She should, however, be able to see one via a Dr.'s prescription. I hope you all have a great trip- I'm sure your wish volunteer has experience and will assist in getting the w/c rental for your daughter to use at Disney. ---Kathy

 

[Who'syourMickey]

She's really smart. She does tell me that her wrist, feet, tummy hurt. She doesn't always say she hurts though she just gets cranky. She didn't verbalize her pain at all until after she was diagnosed last September and we gave her the words to describe her pain...but still she will just not do things or do things a certain way and she won't come out and say "I am not brushing my teeth because my wrist hurts" until AFTER you actually take a look at how she is brushing or not brushing and see that it requires movement of the wrist and ask her "are you not doing this because your wrist hurts?" you start to piece things together. The way she does things is because she has had these symptoms for three years from when she was four and undiagnosed and it could be that she does things unconsciously to deal with the pain that she doesn't realize and therefore doesn't announce. She never once complained about the wagon being hard. She's never complained about sitting for long periods making her stiff. She will just turn into a gigantic crank sometimes. When I hear other people verbalize how their arthritis effects them, I will go and talk to her about it and ask her if such and such is true for her and that is how we figure out her symptoms. Maybe she does have an expressive language delay. Two of her previous siblings had language delay. She hasn't complained in the wagon riding with many times all her toys and her cooler of milk in the foot space and her feet all scrunched together. Now that I think about it, she can't possibly be comfortable this way.

 

[KPeveler]

I've seen people use things like smiley-faces to help their kids describe their pain. i've seen it one of two ways.

first, i have seen people put a poster board with velcro on the wall and different smiley faces ranging from big smile (no pain) to a crying face (lots of pain). that way the child could change it throughout the day for how they felt. or, second, they created a "cartoon" cutout of the kid (lay her down on paper and trace an image of her). let her color it and get involved. then put velcro dots on different joints (hands, wrists, elbows, shoulders, neck, knees, etc). have a bunch of yellow happy faces and blue/red sad faces, so she can put a sad face on the parts of her that hurt. if it turns into a game she will do it, but it will be a "fun" way of communicating that wont turn into you asking her "what hurts" all the time.

i have also see people use happy and sad face stickers that they can put on their clothes to describe how they feel...

 

[Michigan]

Even without arthritis I can't imagine any 7 year old having the stamina to push a w/c through WDW. ---Kathy

My oldest was afraid of the characters until she was seven so it took us from the time she was 18 months until she was 7 to go back but when we did she pushed herself the entire time.

Youngest has been pushing herself all the time even at WDW since the age of 3. Both are very athletic and the youngest one just won overall female track athlete at the Michigan Wheelchair Games. In an 800m she beat a man in is 50's by half the track and a 15 year old boy by an entire lap of the track.

That being said I don't think someone that has low muscle tone would never be able to push themself for any period of time.

 

[Who'syourMickey]

I saw a link on the amazing paralympics games. Wow!

What about getting skate shoes for WDW and we could momentum her along for part of the time. Would skate shoes help her stamina while walking?

I googled and found guide horses and guide dogs for low vision who guide wheelchairs so that looked promising but its very experimental. You have to be 16 to get a guide horse. Her vision is still good for now.

 

[KPeveler]

I hope this does not turn into a debate, but heelys are not allowed in disney parks

 

[GroovyWheeler]

Hi, just wanted to add my thpughts: If not a wheelchair, then what about a special-needs stroller? There's several brands that I know of, that makes them for kids, all the way up to adults. Maclaren is one of them, along with Convaid and Baby Jogger (which has the "special-needs" jogging stroller). These kinds of strollers can go from child to adult-size, and fold easily. They look like a normal stroller, and not a medical device like a wheelchair.

Samantha

 

[Who'syourMickey]

I didn't know. We won't do skate shoes then. Just brainstorming here. So far a stroller or wheelchair seems like what we are going to do, just which kind of wheelchair and if we can get her one which kind she would need is probably what the OT PT will figure out.

I have a call in this morning to her doc about a referral.

 

[Who'syourMickey]

I think from what I've read if I'm pushing her anyway, use a medical needs stroller. If she gains independence and can push one, regular wheelchair. Maybe she could enter the wheelchair games and build up her muscles that way like Michigan's child did. Maybe pushing a wheelchair would help her be able to brush her teeth if she could build up muscle strength there. If she can't with the wrist and foot combo..electric wheelchair as she gets older and if her vision gets low The guide horse or guide dog pull and or guide a regular wheelchair or use a cane with a wheelchair. This is what I gather from this thread and doing a google search.

 

[starbox]

If your daughter is used to a wagon, you may like the strollers you can rent at Disney - they are very wagon-like and have a small storage area in the back and a generous sun-shade. I've had two kids age 8 and 6 and more than 47 lbs each in a Disney double stroller before.

 

[Cheshire Figment]

Also, if you use a stroller, you can get a special card and sticker from Guest Relations which will allow you to use the stroller as if it were a wheelchair. This will allow it in lines.

 

[djblu883]

I'm a PT and work with all ages but more generally with adults. From reading all the postings you have written about your daughter my best suggestion would be to go with the stroller at this point... for the simple reason of easier mobility for all of you.!!!! Her wrist pain will prevent her from pushing a chair and would fatigue her easily if she was able to propel it....A stroller would allow her to rest when she needs it and won't be as hard on MOM/ Dad pushing it as wheelchairs can be! I do NOT suggest the WDW strollers as they are not designed for her special needs and would be uncomfortable for her as the day goes on...and later if you did go for a chair it would need to be designed for her needs and not one you could just get off ebay or used...a PT eval and OT eval is an excellent suggestion and most likely the Doc. would then sign for a chair so medicare will pay for it....one for her without insurance would be VERY expensive!Having a chair approved and designed is a lenghty process so if you are going soon I'd google strollers! Good luck!

 

[Who'syourMickey]

I contacted a PT today and this is what they said. Medicaid pays for only one chair every five years, so they recommend we do not get a stroller. I could buy a stroller sometime out of pocket. I saw one on ebay for $300 today. They recommend that we get a growth wheelchair and they will send someone out to the house to question her and evaluate her and make a plan for a chair that will have an add on for growing. Once they pick the chair, we take the chair proposal to the doc and I'm sure he'll RX for it. The other issue is that we have to act quickly because I think we lose our medicaid in a month because my husband got a raise at work and she could be uninsured. Now we have like 2 weeks to decide the chair that might meet her needs for the next 5 years.

Its kind of a good thing we acted on this now!

 

[Forevryoung]

I contacted a PT today and this is what they said. Medicaid pays for only one chair every five years, so they recommend we do not get a stroller. I could buy a stroller sometime out of pocket. I saw one on ebay for $300 today. They recommend that we get a growth wheelchair and they will send someone out to the house to question her and evaluate her and make a plan for a chair that will have an add on for growing. Once they pick the chair, we take the chair proposal to the doc and I'm sure he'll RX for it. The other issue is that we have to act quickly because I think we lose our medicaid in a month because my husband got a raise at work and she could be uninsured. Now we have like 2 weeks to decide the chair that might meet her needs for the next 5 years.

Its kind of a good thing we acted on this now!

Good luck! I don't know how these things work but could your husband ask for the raise at a later date? Maybe he could explain the situation to his boss and figure something out. I guess it depends on how much his raise is but I would believe that having your daughter's healthcare taken care of is much more of a concern than a raise right now.

Just my two cents.

 

[Michigan]

I contacted a PT today and this is what they said. Medicaid pays for only one chair every five years, so they recommend we do not get a stroller. I could buy a stroller sometime out of pocket. I saw one on ebay for $300 today. They recommend that we get a growth wheelchair and they will send someone out to the house to question her and evaluate her and make a plan for a chair that will have an add on for growing. Once they pick the chair, we take the chair proposal to the doc and I'm sure he'll RX for it. The other issue is that we have to act quickly because I think we lose our medicaid in a month because my husband got a raise at work and she could be uninsured. Now we have like 2 weeks to decide the chair that might meet her needs for the next 5 years.

Its kind of a good thing we acted on this now!

Don't get a chair that grows. They are heavier and ugly. Since she has low muscle tone she needs a light weight chair. They tell you they only replace them every 5 years but if you have other insurance that's not true and once she out grows it they can't deny the replacement. That rule is mostly for adults.

Also I don't know when your trip is but don't count on having it if it's soon. At the earliest it will be 2 months and that is only if you keep on the vendor to get it approved. Most people with medicaid wait 6 months to a year before they get the chair after it has been ordered.

 

[dclfun]

I would see if the PT could find a loan closet where you could borrow a w/c just for this trip then take the time for your daughter to be measured and fitted. You didn't say where you live but most states have another insurance program under the CHIP program for disabled children that would pay for a chair. I know it's alot to look into in a short time, but what Michigan said is the best advice..a lightweight chair. It is also correct that Medicaid or any insurance must provide a new chair if a child has grown so that it remains a proper fit. When I was referring to any 7 year old not being able to push a chair through WDW, I was referring to the rental adult chairs they have there vs. a chair that is lightweight and designed for that purpose. With arthritis though she may need wrist splints or be told not to push even a lightweight chair on her own since it could stress her joints. Her physician and therapist would be the ones to make that decision.---Kathy

 

[SueM in MN]

Also I don't know when your trip is but don't count on having it if it's soon. At the earliest it will be 2 months and that is only if you keep on the vendor to get it approved. Most people with medicaid wait 6 months to a year before they get the chair after it has been ordered.

There are a lot of steps to the process and it can easily take 6 months to a year from the time you start until you actually have a wheelchair. And that's if everything goes well. It may take longer if Medicaid has any questions or needs more justification.
The chair won't be actually ordered until all the approval steps have gone thru and the payor (Medicaid, insurance, etc) have agreed to pay for it. Once it's ordered, it can be 2-8 weeks from the time the order is put in until it is actually delivered to you.
So, definately not a quick process.
For that reason, I'd suggest not trying to postpone your husband's raise or anything like that. You have no idea how long the process will take.

I'm not sure from what you wrote where they PT is coming from, but sounds like it might be from the company that sells equipment???
If so, you might also want to get another PT in addition who is not connected with the equipment company. This is not to say that the company person would not give an objective opinion, but having more experts involved means there are more views.
You also want to look at the weight of things they are talking about - something like swing away footrest hangers that swing to the side might sound convenient, but each side adds about 5 pounds to the weight of the chair. They might be necessary for some people who need assistance transfering out of the wheelchair, but shouldn't be needed for someone who can stand and get in and out on their own. Different tires also can be very different weights.

I would see if the PT could find a loan closet where you could borrow a w/c just for this trip then take the time for your daughter to be measured and fitted..............When I was referring to any 7 year old not being able to push a chair through WDW, I was referring to the rental adult chairs they have there vs. a chair that is lightweight and designed for that purpose. With arthritis though she may need wrist splints or be told not to push even a lightweight chair on her own since it could stress her joints. Her physician and therapist would be the ones to make that decision.---Kathy

Since you are going on a Wish trip, your wish coordinator should be able to help you get a wheelchair for your trip.

When I said she could push a lightweight manual wheelchair, I was just saying she would be capable of moving it short distances, not propelling it herself for long distances. She may (or may not) be able to work up to longer distances, but certainly not someplace like WDW. And, even if you are pushing her all the time in it when you are out, it is a big step up from a wagon.
My DD is able to use her manual wheelchair in the house, but for longer distances (like shopping or WDW) she either uses her power wheelchair or we push her. She doesn't have the stamina to even drive her power wheelchair for a full day in a place like WDW.
What I meant about her not needing a power wheelchair was more because it is a big step sometimes even to be able to get a first manual wheelchair authorized for someone who is able to walk and just needs it for stamina/distances. Getting a power wheelchair authorized is not that easy, even for someone who uses a manual wheelchair. Getting one authorized as a first wheelchair for a child who is able to walk would be even harder.

And, as Kathy said, the people who can and need to make the decisions on what is best because they know what is actually going on.

 

[Who'syourMickey]

Good luck! I don't know how these things work but could your husband ask for the raise at a later date? Maybe he could explain the situation to his boss and figure something out. I guess it depends on how much his raise is but I would believe that having your daughter's healthcare taken care of is much more of a concern than a raise right now.

Just my two cents.

They go by last years income which actually started from a raise he got 9 months before she was diagnosed, so it is too late. When I found out, I asked them not to give him anymore raises and they haven't. His employer has offered to buy her insurance. The insurance has a $6,000 a year deductable and we pay 20% after that so it will be an adjustment but still better than medicaid in some ways because they will pay for off label use of drugs like remicade and she will probably get to go to a facility with better equipment. She still might be approved for medicaid...it is going to come down to pennies on if we are approved or not. Part of her wish is to raise money for better equipment for the opthomology dept. where she goes to help them get a much needed retina camera.