Our son Nicholas is 12 years old and has been ready for a power wheelchair for over a year. Due to the unique healthcare system (or at least ours) in So. California, I have been fighting with our insurance company to get him one, unsuccessfully. We are now working directly with the state, with very limited coverage. They will not approve one with a stander and the way things work here, there is no supplier we can go to to try different ones out - everything is done through catalogs based on what coverage you have. (If we decide on one with a stander, we will have to pay for it ourselves, which is obviously a huge financial burden and perhaps not possible). The state will only pay for a basic wheelchair (maybe tilt, and recline...nothing more)...and they will not pay for a separate stander.

Is there anyone who was able to try a chair with and without the stander and compare the pro's and con's and what you based your decision on? And also if you are happy with your decision and what brand - I have heard lots of positive things about the Permobiles. Since Nicholas will be spending most of his life in this wheelchair, even if we have to make payments for the rest of our lives, we want to be sure that we provide him with what is going to make his quality of life the best it can be, now and in the future. Many thanks to anyone who can help me with this information.

Kim

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Hi

Check with your school district. Ours had a stander that we were able to use while he was receiving PT through the district. I don't know about a stander on a chair. I do know that it would be one more system that could possibly go haywire and end up in the shop. Permobiles are great chairs. Is your son through growing? We just got a second chair for our son since his shoulders were severly cramped by the first chair. A seating system was only $2000 less than a new chair, so we went for it. Are there durable equipment stores around where he could try rear, middle and front wheel drive? It may not be a provider that your insurance has a contract with, but it would give you some information. Especially with the first chair, I would think he would need to try some out. Can a vendor bring 2-3 models to the hospital? That's what they did for us when my son was getting fitted for his first chair. Can you do a road trip to a bigger city to try some out. It sounds like you are pickle with a big price tag. Keep asking questions.
Karen
have you tried your local MDA? I know here in Texas as well as in Oklahoma they have loan closets where they will loan you a powerchair for however long you need one. They loaned my son a chair two years ago and I'm still trying to get them to take it back after my son got his chair. I know it won't be yours completely but if your son needs it, it could be a temporary fix for now.
Kim,
I would think the stander type would help preserve your back more with the transfer process. You could use a gait belt, wrap it around his waist which could help you pivot him in and out of the stander wheelchair ( once he is in a standing position) better. My only question is or the only thought that comes to my mind is: Do our boys eventually have the strength to stand up? Anotherwards, the stander is great in helping them come to a standing position but will they have the strength to stand for you once they are standing? Not only strength wise but what about the ability to stand on their two feet once they develop contractures in their legs?
Kim,

Is there no MDA close to you?We are working on getting a chair now and through MDA they sent out a vendor and OT to our house to work with us to choose a chair. They are now in the process of getting the paperwork together to send to insurance.

Janine
Hi Tina: The stander feature is more for the wheelchair user than for the parent. It is a way to shift postitions and is proven to have health benefits for the boys, as well as perhaps a boost in self-esteem since they can raise to shake someone's hand or be at their peers level instead of in a seated position all the time. I don't think it would help at all with transfering, as I believe once they are in a standing position, the chair supports them - it's probably not possible for transfers. Many parents get a separate stander to use at home - I think there may be some different features that are not available on the chair that has a stander. My state will not cover a separate stander or a wheelchair with a stander (and it cannot be added later). I haven't had the opportunity to see one in person, but I am hoping to get a demo soon (although it would have to be paid for privately, which is pretty expensive). You are right, there will be a time when they won't be able to bear their own weight at all...that's a day I'm dreading! Thanks for your reply and take care :)

Tina said:
Kim,
I would think the stander type would help preserve your back more with the transfer process. You could use a gait belt, wrap it around his waist which could help you pivot him in and out of the stander wheelchair ( once he is in a standing position) better. My only question is or the only thought that comes to my mind is: Do our boys eventually have the strength to stand up? Anotherwards, the stander is great in helping them come to a standing position but will they have the strength to stand for you once they are standing? Not only strength wise but what about the ability to stand on their two feet once they develop contractures in their legs?
My son has a powerchair and a seperate stander. Our insurance would not give him the chair with the stander (permobil).A pro to have the chair with the stander is if you go away you still can use the stander since its with the chair. Believe me you cant take a seperate stander when you go away. A con with having the stander with the chair is if the stander needs repair they take the chair with them.
To answer the question "Will our boys have the strength to stand up in the stander"? I dont think my son is standing on his our in the stander. He is postioned, strapped in, supported and then force into a standing postion. He also wears splints on his feet to position him correctly. The stander is used so they can bear weight and try to keep their bones strong. It helps their circulatory system and digestive system. As for the contrctures I just stretch each day the best I can. He has been in a chair for 4 years and is contractures have gotten worse but he can still use the stander.
Michelle
Hi Kim. Austin is 10 and has a Permobil Stander Jr. One thing you need to think about is one wheelchair does not last them forever. This totally sucks, but from the way I understand it, and what I've been told, most boys are only in a chair for about 5yrs. Partially because they outgrow them and partially because they supposedly wear out by then.

Austin loves his Permobil. I love that it's a stander, but so far, he hates to use the stander and never does. He's also not in the chair all the time yet either. He still walks around the house and in the classroom at school. He hasnt really needed the stander yet, but I think he's scared of it, makes him feel like he'll fall over. I think as he gets older and needs it more, he'll use it more.
Our insurance ended up paying for most of it, and MDA will pay up to $3000 I think. There are also other programs you can look into that will help you. I don't know what they are for your area, you'll have to try to find them.

Also, your right that the stander is for the user, not the caregiver. Once our boys are permanently in these chairs, they will not, from what I understand, be able to hold their own weight. This is the reason for the stander, wether on the chair or not, is for circulation and other things that they benefit from. One thing we noticed when we first got the chair is that, Austin can now go into the kitchen, bathroom, closet or wherever he needs to go and get something that would normally be out of his reach. The elevator on the chair is kind of like this also. Not only is it good for them physically but mentally, they can be more independent.
Hope this helps. Let me know if I can do anything.
Hello,
Our son Jacob has a permobile lowrider jr stander. The stander add's 2" to the seat you need to take into consideration for independant toliet transfer. The stander doesn't give him nearly as good of a stretch as the EZ stander. I have contacted permobile several times and they say he should get a good strech but in truth it doesn't. Jacob rarely uses the standing componet. Soon after he lost the ability to walk (15 1/2 yrs) he was also unable to stand. The standing compent bracing makes transfering impossible from a standing position. The wheelchair itself it good but we would not get the stander again. Another consideration is the company is based in Sweeden with an office in TN. We live in rural MN and the DME companies have very little experience with the permobile and when I tried to get the rep back to see if the stander could be made to give him as good of a strech they would not come back, I was told to deal with the local DME which I had already done without success. I had thought for a $40,000 wheelchair they would come back. That said we have had no mechanical issues and to me it looks less clinical and is very comfortable for our son. Good Luck!

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