Adaptive Strollers & wheelchairs-- experiences?

[Whereneverever]

DD's docs have agreed it's time to look into one or the other, not for all the time, but as needed. Does anyone have a company that they've worked with that they REALLY loved? For an almost 9 year old, who won't be self propelling, which would you lean towards? 

 

The doc keeps saying it's up to us, but if I knew what I was doing I wouldn't ask. 

 

Ideas?

[Ali in OR]

If she would be in it all the time, I would go with a wheelchair which will position her body better to minimize damaging effects from sitting all of the time. If it's just to help out occasionally when needing to cover long distances, etc, I think I would go with the nice strollers that are meant for disabled kids. We don't have one, so I can't help with brands. I remember looking at one that belongs to a schoolmate of my dd's who is several years younger and just thinking it was pretty cool. We now have a conversion van for dd's chair, but at the time I first saw the stroller we didn't and I thought such a stroller would be so much easier to get into and out of a regular van or car than dd's 75 lb wheelchair. 

 

For help getting the right thing, I would work with a PT. Our PT works with the wheelchair company to make sure we have the right solution for our dd's needs. If you have a Shriner's nearby, they have PTs who can help, no cost to the patient.

[Crimson Wife]

We were in the process of trying to get a SN stroller approved a couple years ago when we switched insurance to a HMO and it was no longer a covered item. We wanted it for safety reasons (DD had a tendency to bolt at that time) rather than for mobility so it was important to us that it look like a stroller rather than a wheelchair. I didn't want to get dirty looks if we let DD out and she started running/jumping/etc.

 

DD's neurologist had recommended a Convaid but unfortunately I don't remember the specific model.

[Whereneverever]

If she would be in it all the time, I would go with a wheelchair which will position her body better to minimize damaging effects from sitting all of the time. If it's just to help out occasionally when needing to cover long distances, etc, I think I would go with the nice strollers that are meant for disabled kids. We don't have one, so I can't help with brands. I remember looking at one that belongs to a schoolmate of my dd's who is several years younger and just thinking it was pretty cool. We now have a conversion van for dd's chair, but at the time I first saw the stroller we didn't and I thought such a stroller would be so much easier to get into and out of a regular van or car than dd's 75 lb wheelchair. 

 

For help getting the right thing, I would work with a PT. Our PT works with the wheelchair company to make sure we have the right solution for our dd's needs. If you have a Shriner's nearby, they have PTs who can help, no cost to the patient.

 

There's days I don't think she'll be in it at all, and then there's days she will be in it all day. I don't have a wheelchair accessible van, and I don't think it's in the near future, so that does weigh in!!

 

She is due to see a PT about this...

[Whereneverever]

We were in the process of trying to get a SN stroller approved a couple years ago when we switched insurance to a HMO and it was no longer a covered item. We wanted it for safety reasons (DD had a tendency to bolt at that time) rather than for mobility so it was important to us that it look like a stroller rather than a wheelchair. I didn't want to get dirty looks if we let DD out and she started running/jumping/etc.

 

DD's neurologist had recommended a Convaid but unfortunately I don't remember the specific model.

 

That's one of the brands I've looked at. Thank you-- and I'm sorry that your HMO won't cover it. They're spendy!!

[DawnM]

Subbing.

 

A friend's son is still in a stroller for days where he is out all day (Disney World for example) but doesn't need it all the time.  She doesn't want a wheelchair because she doesn't want him to feel that there is something wrong with him.

 

He is 8 and even though he is small he is growing out of the traditional stroller.

[Daria]

My experience with both is as a teacher, not a parent, but I think there is a big difference between the way that other kids and people in the environment react to a kid in a wheelchair, compared to a kid in the stroller.  I find that my students are treated much more age appropriately and respectfully in a wheelchair that looks like a wheelchair.

 

In addition, most wheelchair like strollers are somewhat reclined, making it hard for kids to use their hands.  They have to lean forward and work against gravity to write or feed themselves while seated, or do other things.  If you imagine that your daughter will be staying in the wheelchair for any seated activities (e.g. going out to a restaurant and staying in the chair vs. transferring) then I'd keep that in mind.

For those reasons, my instinct would be to get a wheelchair.  

[prairiewindmomma]

DD had a Quickie Zippie 2.  It was a very adaptable wheelchair; if her needs had changed, we could've easily added an iv pole or the like. The wheelchair grew with her.  We originally would just roll her up to the table, but we eventually got her a slide on table for her wheelchair so she could eat or draw or do extensive craft projects at her height more easily.   The wheelchair was light weight; all things considering. I would dead lift it, unfolded, and it fit into the back of our Odyssey as it.  To ride in a car, or on an airplane, we had to fold it. That was a bit of a complicated process--but much easier than dealing with a fully mechanized chair.

 

Wheelchair fitting is an art. A technician was sent to our house, did measurements, asked a bunch of questions, and then customized the chair set up to her. Because she had contracture in one leg and some other things, when the chair was delivered he adjusted the foot rest, and so on.

 

The full padding of a quickie zippie is MUCH more comfortable for all day use. I would go wheelchair>stroller for someone her age unless she is very petite.

[amo_mea_filiis.]

http://www.stealthproducts.com/catalog/lightning/

 

This is the stroller my ds used for a while. It was needed once he was able to get out of a regular stroller, but still needed to be restrained on outings.

 

This thing was completely decked out for tantrums! Unfortunately he got too big for me to put him in it during a tantrum. So I gave it away after it sat unused for about a year.

[Whereneverever]

Thank you, everyone! I'll see what the PT and tech suggest. 

 

I'm worried that a stroller will make her seem and feel more like a baby, and I don't want that... but she does need something comfy enough she can sleep in it. I don't know. This isn't something I thought we'd be getting...

[itsheresomewhere]

Check and see if there are any yahoo groups or facebook groups in your area for the equipment.  I know a few who either got a stroller/wheelchair through those types of groups or tried out a stroller/wheelchair. 

[zimom]

Most insurance companies require a PT evaluation from a PT that specializes in wheelchair seating.  The evaluation is often done in collaboration with a seating specialist from a wheelchair company.   I second what others have said about wheelchairs versus strollers, based on her age, I would stick to a wheelchair.  They will talk to you about her needs, measure her and help determine the best type of wheelchair for her.   Then the fun starts.   I just spent 9 months trying to get my daughter a new wheelchair to replace her six year old wheelchair.   It was finally approved by her insurance company on December 30th, which meant it had to then be ordered, custom built, shipped and delivered to her by December 31st since we changed companies January 1.    Obviously that was not humanly possible.  

 

Edited January 15, 2016 by zimom

[sassenach]

We have a Zippie frame with a Ride Design custom seating system. This is probably more than you need but I want to put it out there for those who might need it. Ride Design has changed DS's life. Any child with severe orthopedic deformities and/or scoliosis should be in this seating system. It's completely molded to his body, which prevents red spots and keeps him totally supported.

[Whereneverever]

I haven't seen any local groups for used equipment. :-/

[prairiewindmomma]

We donated dd's zippie to a friend. Beyond that, our only options were an equipment bank a couple of hours away or a charity that would rehab it for use in a developing country.

 

I pinged your blog which lists your general location. You might check here to see if they know of any contacts: http://www.co.larimer.co.us/health/chs/LoanCloset.pdf You can also reach out to your PT who likely also has a list.

[Ali in OR]

I don't envy you the coming insurance battle. Hopefully you won't have problems, but I have heard that they push back more on strollers vs. wheelchairs (which doesn't mean you can't get it, you might just have to battle harder). Our insurance covers durable medical equipment 100% but still manages to make it pretty difficult--they request more letters/justification from the PT, etc. Took 5 months just to grow her chair a bit bigger two years ago. There are foundations that help provide equipment for  kids. We got a stander from Wheel to Walk based in Portland Oregon after insurance refused to cover one.

 

My dd needs an excessive amount of sleep but cannot sleep in her straight, 90°-angled wheelchair. There are chairs that tilt but they'll only prescribe them (and insurance would only cover them) if there's a medical need such as child does not have the muscle control to stay sitting up. The stroller would work better for sleeping. Hopefully you get great help from the PT to determine the best solution for your dd.

[Whereneverever]

I don't envy you the coming insurance battle. Hopefully you won't have problems, but I have heard that they push back more on strollers vs. wheelchairs (which doesn't mean you can't get it, you might just have to battle harder). Our insurance covers durable medical equipment 100% but still manages to make it pretty difficult--they request more letters/justification from the PT, etc. Took 5 months just to grow her chair a bit bigger two years ago. There are foundations that help provide equipment for  kids. We got a stander from Wheel to Walk based in Portland Oregon after insurance refused to cover one.

 

My dd needs an excessive amount of sleep but cannot sleep in her straight, 90°-angled wheelchair. There are chairs that tilt but they'll only prescribe them (and insurance would only cover them) if there's a medical need such as child does not have the muscle control to stay sitting up. The stroller would work better for sleeping. Hopefully you get great help from the PT to determine the best solution for your dd.

 

I'm really worried it's going to be a nasty fight with insurance. Sometimes she's great-- and sometimes she can't even hold her own head up, you know?

[Crimson Wife]

That's one of the brands I've looked at. Thank you-- and I'm sorry that your HMO won't cover it. They're spendy!!

 

Fortunately with continued intensive behavioral therapy plus just general maturing DD is now able to safely accompany us on outings without the need for a SN stroller. The issue was the discrepancy between her developmental age and her physical size- she was too large to fit in a regular stroller but developmentally she still needed to be in one for her own safety. We are lucky now that it's no longer an issue.

[Crimson Wife]

I'm really worried it's going to be a nasty fight with insurance. Sometimes she's great-- and sometimes she can't even hold her own head up, you know?

 

The more documentation that you can get, the better (assuming it's a covered benefit). Also, don't be afraid to appeal any denial and/or request an independent medical review through your state regulator. Sometimes even the threat of going to IMR can cause the insurance company to back down.

[prairiewindmomma]

We had no problems with our insurance.

 

Seriously, it was a great experience.

We had epic fights with our insurance company over a wide variety of things, but the wheelchair was never an issue. From ordering to receiving the chair, it took about 4 weeks.  The wheelchair guy even had dd's name embroidered in pink on the headrest and threw in the slide-on table as a surprise a few weeks later when he heard she had been re-hospitalized.

 

If eating or drinking is going to happen in the chair, or if incontinence is an issue, give some serious thought as to how to clean the wheelchair.  Thoroughly removing food from the stitching of a chest support is an hour long affair involving dish detergent, a toothbrush, and dry time.

[Whereneverever]

The more documentation that you can get, the better (assuming it's a covered benefit). Also, don't be afraid to appeal any denial and/or request an independent medical review through your state regulator. Sometimes even the threat of going to IMR can cause the insurance company to back down.

 

We have a lot of documentation, including frequent hospitalizations. I'm hoping that since the need is a physical one it will go smoother... 

[Whereneverever]

We had no problems with our insurance.

 

Seriously, it was a great experience.

We had epic fights with our insurance company over a wide variety of things, but the wheelchair was never an issue. From ordering to receiving the chair, it took about 4 weeks.  The wheelchair guy even had dd's name embroidered in pink on the headrest and threw in the slide-on table as a surprise a few weeks later when he heard she had been re-hospitalized.

 

If eating or drinking is going to happen in the chair, or if incontinence is an issue, give some serious thought as to how to clean the wheelchair.  Thoroughly removing food from the stitching of a chest support is an hour long affair involving dish detergent, a toothbrush, and dry time.

Good to know, thank you!!!