requesting help finding a mobility device

[MegtheMom]

Hi - I've been lurking on the DisAbilities board for some time. I've learned a lot from the collective wisdom and experience of the generous folks on the board and I'm hoping you can help me with a specific problem my family is having with regard to mobility. Our DD 25 has Prader Willi syndrome, a complex genetic disorder. Along with a whole host of other medical and behavioral issues, DD has low muscle tone, ligamental laxity, some serious joint problems (mostly knees and back) and coordination issues. We have been pushing her in a manual wheelchair in the parks for years now, to help with her endurance and pain issues. It's worked pretty well for us up until this point. But she's an adult now and we are both getting older ourselves and starting to fall apart a bit (DH is 65 and I have back problems). DD can't push herself in the manual chair because of her low tone. She can't use an ECV because she also has a pretty significant intellectual disability and can't navigate through the crowds - she can't plan where to "drive" safely and she has NO reflexes...the first person who steps in front of her or stops suddenly is going to get run over. We think a reasonable solution to this problem would be to find something that's powered like an ECV (so it's not dependent on our pushing) but that we could "drive" while walking next to or behind her. Does anyone know of such a product? Thanks in advance for any advice or recommendations anyone can make -- and have a magical day!

 

[Cheshire Figment]

Hi and to disABILITIES!

My thought would be getting a power chair that has the controls located at or near the back, so a companion and not the rider would control the chair. I'm sure that these would be available; check with a local Durable Medical Equipment company.

The related (and important) questions are (a) will it be covered by insurance, as you are probably talking $5,000 and up, and (b) how will you transport it, as it will weigh at least 300 pounds and cannot be easily taken apart.

 

[Michigan]

You could try power assist wheels on a manual chair and add a stroller handle to make it easier on your back.

 

[MegtheMom]

Hi to you both and many thanks for the warm welcome and your helpful suggestions. Because DD only uses the chair for distance, the insurance company (as you predicted, Cheshire Figment) already said "no" to a power chair. But I had no idea something like power assist wheels even existed; a quick Google search makes me think that's the direction we should be looking in. Yay! Has anyone on the boards used this kind of device and if so, what's your experience? Any thoughts on what I should be looking for/avoiding?
Thanks again -- I just knew the crew here would have a solution!

 

[Michigan]

My oldest daughter has a friend that is a very high level paraplegic that uses them. The only bad thing is they are very heavy and I don't think they are very cheap. You also need to remember to turn them off when not in use.

 

[WheelieBigDisFan]

I don't necessarily think that a power assist wheel is an option here, but I might be wrong. Power assist wheels use a sensor built into the handrim to sense the WC user pushing the chair. It then turns that push into forward momentum, so that the user doesn't have to push as hard to propel the chair. I am under the assumption that just having power assist wheels on a chair doesn't mean that the P.A. function is in use if being pushed by a companion.
I would contact different DME companies as well as the manufacture of the P.A. wheels to see if they are a viable alternative for your situation. Also, I think P.A. wheels run around $12,000 for a set, so they would not be a good alternative for occasional use. My suggestion is to have your doctor write a Rx for a seating physical/occupational therapist to evaluate her for a wheelchair that will meet her needs. If she ever needs to use the wheelchair in the house to get from her bedroom to the bathroom, kitchen, etc. then she might qualify for a wheelchair through insurance. Medicare/Medicaid require that a wheelchair be for "in home use" meaning that the primary means of use is in the home so that the user can get around in their living space. Simply needing the wheelchair for outdoor use, long distance use, etc isn't good enough (although once you qualify for a wheelchair you can of course use it for those purposes).
It does sound to me like your daughter would need a powered wheelchair with companion controls on the back to allow for a caregiver to drive the power chair. With the low muscle tone, lig. laxity and knee and back problems I'm sure there are days where she falls, has pain with ambulation, etc. and has difficulty or is unable to get from point A to point B. If you can show how this impacts her IN THE HOME then you might be able to get insurance to pick up the bill. Your best bet is finding a PT/OT who does seating evaluations to evaluate your daughter, write a good letter of medical necessity and have your daughters doctor sign off on it.
Good luck and I hope you are able to get some answers that will allow you to be more mobile!
Mandy

 

[ttintagel]

This is something you'd have to try at home first to see if it worked, but I wonder if it would be possible for you and your husband to walk on either side of an ECV and operate the controls for your daughter. That way, you'd be steering but not pushing.

Again, I don't know if it would work or not; just brainstorming.

 

[bidnow5]

frankmobility.com has something called Viamobil it's a pushing and braking aid.

 

[Mary976]

One other tip I had was to see if you could upgrade her chair to something lighter weight, with higher quality pneumatic (air filled) tires. Is she using a custom wheelchair right now, or is it one of those hospital style ones that you might rent for someone who needs it short term?

My DD was having a harder time pushing herself in her manual chair, so we thought she was going to be moving to a power chair. She ended up getting a new manual chair, with really high quality lightweight wheels.

Those type of chairs are really expensive however, so I would agree with PP about getting an eval to see if insurance would pay for it.

Mary

 

[MegtheMom]

Hi All,

Super late coming back with an update but I just wanted to say thanks to all for the helpful responses. Sure enough, the power assist was a no go per the insurance company but we had a PT at Sarah's Easter Seals program do an evaluation and she was really helpful. We ended up getting a new manual chair that rolls along like a dream - we feel its an improvement. My back thanks you all!

 

[KPeveler]

The Viamobil is one - I was going to post about that.

The other option is to find the best rehab hospital in your area - most people with life long or slowly progressive diseases generally do not end up in these places (generally they are for people with traumatic issues - car accident, stroke, etc).

Many times these places will have a Wheelchair Evaluation Clinic. It is usually staffed by at least one PT/OT whose job is to fit wheelchairs. This person generally knows what is out there, and what the options are.

When you are talking to the PT, do not talk about your DD's good or even average days. Talk about her worst days - absolute worst. Basically, on a bad day, would you need help moving her around the house? Would her intellectual and/or physical disability ever manifest in a way that would, if you could physically do so, move her from bed to toilet to kitchen/food area? Would her physical, intellectual, emotional, etc issues ever cause an inability for her to complete the Activities of Daily Living (ADLs) on her own?

Does she always follow all directions so that she can bathe, dress, toilet, eat, and move about the house completely on her own? Does she ever require physical help with any of these due to her low muscle tone?

Basically think of her bad days (even for those of us with congenital disorders, we have good and bad days), and have the PT help you plan for that. A power wheelchair with an attendant control would be best. If that does not work, get the PT to help you write for the lightest weight wheelchair imaginable (it is unbelievable the difference between the standard and the ultra-light chairs).

Essentially if on her bad days you need to use a wheelchair in the house, if you could do so, that is what you, the PT, and the vendor need to plan for. Then the PT attached with the Wheelchair Clinic would write the script in detail for insurance. I have had good luck doing this, and this might help. Yes, a powerchair weighs more, but it sounds like you will need a power option soon. As others have said, most power assist wheels require a user to push using the rims on the wheels.

Also to consider would be a used powerchair with an attendant control - there are usually such things on eBay or available through local assistive technology organizations. Even if you got a regular power chair and you walked next to her and pushed the joystick from the side (harder but can be done), that might be helpful.

Hope something in all this rambling helps!

 

[NotUrsula]

I feel for you, my mom had severe arthritis and could not really push her own chair, either. Even with a good lightweight chair, it was a a workout pushing her for long periods.

I think I found what you are looking for, but I've only found it on a UK site; you could take the photo to wheelchair dealers to see if you can get a US version. It is a power pack with extra propulsion wheels that attaches with a bracket to the rear of the chair. http://www.independentliving.co.uk/powered-wheelchairs.html#carerpower