Wheelchair & van advice?

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Jamesgol

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I have now reached the stage where a wheel chair and van combination are needed. My neurologist just wrote the prescription for a wheel chair yesterday.

The ALS Society is going to loan me a Permobil F3 until I can get one of my own. Which type of wheel chair (and options) do you prefer?

What about the van? Side load? Rear load? Brand? Size? My wife seems to lean toward big vans (we have 2 mastiffs).

We are getting a Hoyer lift too. What do you prefer, manual or electronic.

Thx
James
 
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swalker

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I am 6' 3" and weigh 175 pounds. The F3 is too tippy for me. I have chosen an F5 for my next wheelchair.

There are many good wheelchairs on the market. I recommend going to a wheelchair provider (such as NuMotion) and try out as many as you can.

I learned an amazing amount when I did that!

It can take a long time to get the wheelchair. My first wheelchair took 4 months after my first visit to NuMotion. Now, 4 years later, I am working on getting the F5. I started that on October 22, 2018. We are still working on insurance approval. Once that gets taken care of, it will probably be a month until my wheelchair arrives.

I strongly encourage you to get the wheelchair before getting the van. By doing so, you will be able to make sure the wheelchair will fit in the van (my current wheelchair will not fit in most vans).

I wound up with a full-size van, a Chevy Express conversion van. I actually like it a lot. It allows me to take 2 wheelchairs along with lots of other equipment. After having it for 4 years, I would not consider a minivan. Most folks like their minivans, though.

Here is a link to a thread I wrote that you might find interesting: https://www.alsforums.com/forum/tips-tricks-gadgets/30826-things-i-have-learned-about-wheelchair.html

Steve
 

KarenNWendyn

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Steve is the expert. I’m a relative newby, but I’ll share my experience and opinions.

I’m unusually fortunate to have two power wheelchairs. One is a Permobil F5 that I got through my insurance plus a hefty chunk of out of pocket cash because Medicare will pay for a group 3 package, but I wanted the standing feature available on the F5. I believe Medicare would have payed for a F3 or M3.

I also was very generously gifted a Quantum V6 2.0 by the widow of a veteran who died of ALS. The Quantum was nearly new.

The Permobil F series chairs are front wheel drive. The M series are midwheel drive. My Quantum is a mid-wheel, similar to a Permobil M3.

I use both the F5 and the Quantum. Here’s what I’ve noticed.

The front wheel drive handles great outdoors but still spun out in wet decomposed granite and gravel. I’d need 4 wheel drive for that. The F chairs have a bigger turning radius and are a bit more awkward to maneuver around tight turns or in my van, which is a converted Toyota Sienna.

The midwheel drive chairs turn on a dime and are a great choice if you have a lot of tight turns in your house. I find my Quantum to be far more maneuverable than my F5 and easier to get in and out of the van. So far, it is my go to chair when I use the van and go to lectures, appointments, concerts, movies, etc.

The disadvantage of midwheel drive is what is called “caster jerk”, referring to little wheels in front and behind the main driving wheels. These little caster wheels sometimes have a mind of their own and seem to jerk the chair around. If you make gradual turns, you don’t notice it much, and if you slow way down (when maneuvering in the van, for example), it can be managed.

Mid wheels can also get hung up more easily with obstacles outdoors (such as ruts).

If your house has a lot of tight turns, consider a midwheel (I like the Quantum, but think Permobil M3 gets better reviews). Otherwise, a Permobil F3 should be fine for most people. Or an F5 if you want to stand and are able to pay more.

If you want to hike trails, get a 4wd.

My van is a VMI-modified Toyota Sienna with a side ramp. The ramp comes out with the push of a button, and the van kneels to decrease the slope of the ramp. Modification also involved lowering the floor, which reduces ground clearance.

The minivan drives like a car, and I can get up to 24 mpg if I’m lucky, though usually less.

The disadvantage is that because of the space the pwc needs for getting in and out, the only space for luggage, groceries, etc is in the back back (behind what would normally be the 3rd row of seats). I’m concerned that for traveling, that might not be enough space for luggage, and things like a commode chair and lift. The dog is going to be harnessed and attached to the back seat.

With multiple big dogs, you might consider a full sized van.
 

KarenNWendyn

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Addendum to above: my Permobil F5 does fit into the Toyota Sienna (minivan), it’s justa bit harder to maneuver. I use the same EZ lock mechanism in the van for both chairs (special brackets have to be installed on the bottom of the chair).
 

Jrzygrl

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DH is 6'1" with a long torso. He has a Permobil F3. He has used it extensively both in our home (which we had remodeled to widen doorways) and outside. Get the chair that is best suited to you. Make sure you go to a seating specialist to figure that out. They should have a variety of chairs for you to try.

My only advice on vans is not to get one until you get "your" chair. The only minivan conversion that DH fit comfortably in was a Dodge Grand Caravan with a Braun XT conversion. Mobility Works brought several different makes/models out for us to try. We wanted a minivan so it would fit in our (2 car) garage. We can deploy the side entry ramp and he can load into the van in the garage.

Both the PWC and van are big expenses. Take your time and figure out what is right for you - your home, lifestyle and comfort.

We started out with a manual hoyer - which I believe was the cheapest one that the DME could provide. We were lucky to be able to later get a power hoyer from the ALS loan closet. It is a VAST improvement over the manual. I have the manual stored in the garage as an emergency back-up. Check with your local ALS chapter to see what they have. Most insurance will only pay for a manual as far as I know.

Good luck in finding a good fit.
 

lgelb

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James, your home. grounds and where else you go should determine whether you get a front wheel or mid wheel drive wheelchair. The F3 is a front wheel version.

The wheelchair supplier or PT who writes up your wheelchair order after measuring you (and ideally, this should be done in your home so they can see it) will include a host of features needed for PALS, like power foot rests, tilt and recline.

It is worth trying to get the "seat elevator" (makes the chair go up for using more tables and makes transfers easier for a time, among other things) and anterior tilt (makes pressure shifts easier, may also help with transfers), funded by your insurance plan (which is more likely if you have a case manager that you work with on the order), and Permobil funds a limited number of PALS in need for the seat elevator each year.

Probably most important is getting a wheelchair supplier (check your plan's in-network provider list) most likely to treat you like a customer more than a commodity. You do not have to go with the clinic's recommendation, and you shouldn't feel under the gun.

You will want a power lift, even though Medicare will only "pay" for a manual, leaving you with the rest. Paying cash on line may be cheaper. Your ALSA chapter may have a long-term loaner.

You may want to search for past threads, read the Equipment sticky, and of course there will be more good advice here.
 

blitzc

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So, it sounds like you are saying that Medicare will not pay as much as many private insurance? I have my private insurance until End of August, retirement insurance starting in September and hopefully Medicare in November after 5 month waiting period. Do I inquire at Clinic about starting this process while private insurance still exists? I know Steve says it takes months.

Cathy
 

KarenNWendyn

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Cathy, I don’t know if the process is different or faster depending on private insurance vs. Medicare. When you need a wheelchair, you need it. Insurances will have different criteria of what hey will cover and what your out of pocket costs are.

The clinic PT/ OT determined I was getting close at my visit last August. They referred me for evaluation at a “wheelchair clinic” a month later. There, I was evalated by an OT. A guy from NuMotion was also there, and he took all kinds of measurements of me. They wrote up an order and submitted it to insurance. My neurologist had to fill out some paperwork as well.

It took about 3 months from that evaluation until I got the chair. In the meantime I used a loaner Permobil F3, and I also received the Quantum during that time.
 

swalker

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I obtained my first wheelchair (Permobil C500s VS, comparable to a Permobil F5) via private insurance in the first few months after I quit working.

I currently have Medicare as primary insurance with private insurance as secondary (not a supplemental policy...a full up policy that keeps my wife covered).

I am in the process of getting an F5 approved by insurance. We are still in the process, so I don't know what the final outcome will be. Medicare has agreed to fund the basic wheelchair along with power tilt, recline, and legs. The agreed to fund upgraded support items like headrest, thoracic supports, and roho seating.

Medicare has denied the standing functionality, power seat elevate, lights, arm supports, phone holder, and USB charger. My secondary insurance (private) says they should cover many of those things for me. Unfortunately, I have not been able to get the funding department at NuMotion to submit a preauthorization request to the private insurance company.

For my Permobil C500s VS, private insurance paid for power tilt, recline, and legs, along with the standing feature, lights, and many support pieces (headrest, thigh supports, thoracic support, etc. I had to pay for power seat elevate and a cup holder (plus normal out of pocket expenses like deductible, etc.).

In summary, I don't think you will be able to know what insurance will pay for until you actually apply. Whether or not Medicare is primary or secondary depends (I have been told) on the size of your employer. Sorting out who will pay what may be a long and tortuous process. In the end, you may not know until after the wheelchair is delivered.

That is a reason I recommend to everyone that they start the wheelchair acquisition process early. My first one took 4 months. I am now 4 months into the process for my second wheelchair and we have not yet cleared the insurance hurdle. Once that happens, we are probably still a month away.

I will add that it is a good idea to have access to a backup wheelchair. This might come from the loaner closet or you might decide to buy a used wheelchair yourself. Used wheelchairs can be surprising inexpensive...rarely more than the total out of pocket costs encountered during the initial purchase.

I have bought two wheelchairs for under $1,000 each and a really good C500 for under $4,000. All had very low miles (< 100, 36, and 26, respectively). Each took about $1,000 of extra parts to get them to fit me and work just the way I wanted. I would not want to give any of them up!

Steve
 

swalker

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As an additional thought...

All of my wheelchairs have a power seat elevate function. I would not be without it and would be willing to pay full price out of pocket to get it. I highly recommend it.

My Permobil C350 came without power seat elevate. We purchased used components off of ebay for about $250 and bolted them on. It took a bit of research to get it working correct, but was actually not much work (especially for me, since I did not do any of the heavy lifting:)).

I had to pay out of pocket for the power seat elevate on my Permobil C500s VS. I am glad that I did.

Both my Permobil C500 Corpus 3G and Magic Mobility X4 wheelchairs came with power seat elevate. It was broken on the X4, but we managed to find and fix the electrical fault causing the problem.

Steve
 

lgelb

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Traditional Medicare can be harder to penetrate in terms of gray area reimbursement. Medicare Advantage, you can usually find a way in. I recommend that everyone explore their eligibility and options for Medicare Advantage because then your medical/drug costs are integrated, and you can access a case manager who knows or can learn something about ALS, instead of a paint-by-numbers minimum-wage claims processor.

If you switch insurance during the process, that can make reimbursement more difficult depending on whether the supplier is in-network with both plans, and Medicare sometimes kicks later about repairing a chair it didn't buy. For accountability, if you do have the option to order and receive the chair via a plan other than traditional Medicare, I would do it if you can.

As for the waiting period, evaluations can be scheduled quickly if the supplier knows your situation, you get the order in for approval, then approved as quickly as possible (this requires being a bird dog between your clinic/supplier/plan as this is usually the pinch point and communication between them is catch-as-catch-can), and Permobil generally turns submitted orders for PALS around within a month.

Steve, the DME cannot submit a preauth request for what Medicare covers to the secondary plan until they get the official notice of rejection (an actual notice, not their best belief) from Medicare. If you are having difficulties with the supplier, I would call your case manager at the secondary plan and ask how you can expedite their consideration of the incremental cost. Unfortunately, the supplier is likely in no rush because billing is always behind and they know you can pay for the remainder. Sorry to be blunt.

To all -- this process should not take 4-5 months if you are in need. If it does, the supplier is not doing their job and sometimes you have to be assertive with many calls/emails to make that happen. But don't rush and skip something you need. Look at the order before it goes in because if something is left out you might never get it reimbursed. Some things are small and not too much cash, but might not be available except through the DME. And once the big-ticket deal is over, you are seldom their top priority.
 
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lgelb

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One other wheelchair reminder: several Permobil and other brands of wheelchair models, as well as lifts, have been recalled to be inspected for potential covered repairs due to risk. Dealers are supposed to contact you; they won't always do that. So it's wise to check the recall database periodically.
 
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frankb

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Re: Power wheelchair and restaurants

my first van was a Toyota sienna modified by vmi. mobility works had difficulty installing an ez-lock for my f5 pwc and finally had to install strap-downs (I rode as a passenger, not as a driver). my second van is a Chrysler pacifica, modified by braun ability, and find it much easier to deal with and although a base model we found the controls to be superior as well as the quality of the ride. one problem to be aware of when using the ez-lock feature is the bolt installed on the pwc is usually too long and must be shortened to provide clearance when using ramps, etc. the dealer can easily shorten the bolt. good luck !
 

Jamesgol

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Wow! This a lot of really great information and I am forever indebted to those of you who responded. THANK YOU! THANK YOU!

The folks at Numotion measured me and recommended the F3. They said it was a good compromise for inside and outside use. And, they are loaning me to try out.I am keep the loaner until mine is approved.

I love the idea of a standup position but Numotion said it would cost $12k more.

Thanks
James
 

Kristina1

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Karen: "caster jerk" omg I had no idea there was a name for that! I have the Permobil M3 and it has way way better maneuverability than the F series loaner I had been using, but those little wheels definitely have a mind of their own. I can be holding the joystick in a perfectly straight angle, but the chair will weave drunkenly for no reason at times. Going over small bumps the little wheels totally go nuts and spaz out. I love the chair and it's a much better drive than the loaner, but those smaller wheels totally act up seemingly at random!
 
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