Nuts & Bolts of Getting Your First Wheelchair in the USA

[jesse_the_k]

I've been using a powerchair for community mobility since 1993, and I've just finished the six-month process of getting my fifth one--a Quickie S636 with matte purple paint. If you're wondering whether your life would be improved by using a wheelchair, see my essay Deciding to Use a Wheelchair When Walking is Possible.

Your first chair is a learning experience.

Only time and experience can teach you what you need. Armrests, for example: they get in the way when you do a sliding transfer, and they add weight. On the other hand, when you’ve been rolling around for a while, you may discover your tired shoulders need armrest support to hold a book.

Chances are you have been limiting your travels recently: it’s only once you’re in your chosen environment with a wheelchair that you learn if you need larger casters (to handle cracks and grooves) or smaller ones (to maneuver very tight spaces). Experience will teach you what’s too heavy to lever into the trunk of your car. As you use the chair, your body envelope changes. So will your ability to judge how to navigate and how much room you really need.

Start with a used chair.

Experiment. See what you need and what works in your life.

Used chair pricing is weird. List prices are irrelevant. Insurance companies pay around half the listed price for new equipment; Medicare/Medicaid pay less. Since no insurance company pays for used equipment, the secondary market is based on end-users’ investment–usually, what their copay was when new.

Don’t use insurance to buy your first chair.

Most insurers only pay for one wheelchair every five years, and they only purchase new. If there’s any chance that you’ll need powered instead of manual mobility, it’s very important to get insurance support for that (more expensive) purchase.

Connect with Chair Users for hands-on experience

Independent Living Centers (aka CILs or ILCs) advocate for disabled people. Find the one in your state, and ask for contacts among local wheelchair users. (That’s how I learned to operate my powerchair!)

Find support groups with people who already use chairs who may let you try them out. Wheelchair athletes can be the most flexible about trying out equipment (since they usually have both everyday and sport chairs). Are there “adapted fitness” classes locally? The Wheelchair Sports Federation can point you to a local group.

Some durable medical equipment companies rent lightweight or sports wheelchairs, which is worth investigating if the above don’t pan out.

Places to Buy Used

• New Mobility magazine article discussing used chair market
• CADATA is a US database of Federally-funded state organizations connecting you to assistive technology
• Goodwill / Savers / second-hand stores
• eBay
• Craigslist
• Disease-specific groups, such as amputees (diabetes, veterans); MS Society; ALS support groups; “adaptive fitness” or SCI recreation groups, and UCP/United Cerebral Palsy, whose mission extends across the disability spectrum.
• I used to refer to the Pass It On Center and Independence First Mobility Store, but they're both out of business 2022

More Reading & Reviews

@kabarett's Reinventing the wheel: form, function, and your first wheelchair is an excellent essay on the process. Kab writes from a UK perspective, with a different funding model, and the comments contain much wisdom.

United Spinal Association’s Tech Guide has enduser/caregiver reviews relevant to your interests. Like UCP, United Spinal doesn’t require you to have a spinal cord injury to take advantage of their resources.

The CareCure Community Forum Rutgers professor Dr Wise Young nurtured this wide-ranging board. Lots of equipment info deep in there.

Comments

[delight]

So! I have questions. I am tired and won't be able to read the RESPONSES to the question until I wake up, but here are my questions.

- My dad,before he died, was leaning toward suggesting I get a chair because of all the problems with my feet/my POTS, but,

- I now have a large dog who has bad enough leash manners already how would I walk him (plus he is my medical alert dog and I need him with me most of the time; his leash training is, trust me, REALLY, REALLY BAD because for some reason he just isn't learning not to yank the way he learns most things and it is very tiring but recently I've been too sick to even walk hima nd keep having to ask my husband to do it which makes me cry) and more importantly,

- my muscle wasting disease is has progressed the most in my arms. My forearms are essentially dead weight connecting functional elbows to semi-functional hands. To clarify, I can't lift more than about two pounds and I cannot lift my arms over my head. Or even really touch the top of my head. Hair washing is an adventure and I have to sit down to do it, etc.

A power chair is 300% out for financial reasons, even though I have wanted nothing more in life than an exact copy of the chair-carts they have at the local Target because they require such a tiny arm/hand contribution and have sensitive controls such that I love going to Target just to feel like I can ambulate without pain.

could I even handle a chair with the arm issues? and what about Mr. I Don't Do Leashes Well When You're Standing Up What Would I Do When You're Sitting?

[killing_rose]

I come armed mostly with the internet and my own research.

Having tried my hand/shoulders issues with a manual chair (my partner is a chair user), I suspect that a manual chair wouldn't be a great fit for you.

That said, for a first chair, perhaps check ebay?

That's where I've been eyeballing, and there are actually multiple power chairs currently available for 500 to 600 that look functional (I am at work, digging into every listing esp. when I obviously am Person Sticking Their Nose in, is a bit beyond my brain's capacity for functioning.) and amazingly, there are people who do not charge the earth for the delivery.

As for Mr. Leash issue, my partner has...six cats and a dog and a half? I swear to gods that the dog runs away every time someone goes to walk her. Unless she is being walked by D (my partner), and then she's fine.

[jesse_the_k]

All contributions welcome!

[jesse_the_k]

Yeah, sounds like a powerchair is what you need. It might not be that far out of reach.

The state vocational rehabilitation department has federal money to spend to enable you to continue working. That money can go to mobility equipment--powerchairs, lifts, even vans.

In addition to used equipment, it's worth poking the CADATA folks to see if there's a "loan closet" where you could try out some chairs.

Target's chair-carts are known more formally as "scooters," and are available new for ~$1000 to $3000. Used under $1000. Four-wheelers are much more stable.

Powerchairs go from $2000 to $20,000. The high end is for sophisticated driving controls, like puffing and sucking on a straw, as well a seat tilt and support for ventilators. On the low end, you control the chair with fingers/palm on a joystick requiring grams of pressure (also possible to control it with any other moving part: toes, nose, chin, shoulder &c).

Are you comfortable in the furniture-chairs you currently use? It's possible for a wheelchair seat to be fabulously comfortable, and that's one reason I use it.

Would you be using it principally outside or in?

Riding public transportation?

As far as dogs go, powerchairs are great places to anchor a leash. My previous dog was a wild-ass puller (even with a Gentle Leader/Halti). I used a long lead with one end clipped to the frame with a real carabiner*. I added some flex to the system by passing the lead under my leg, then looped it around my forearm. In the worst case, Lucy was pulling against me + the chair = ~300 lbs. She never won.

Feel free to ask more, and don't worry about perfect spelling :,)


* the kind that climbers use, which are rated for hundreds of pounds pull.

[kaberett]

Ooh, linking to this from my post.

Does the US have something like Shopmobility?

[jesse_the_k]

Not exactly. Since passage of ADA, most large stores have wheelchairs available inside. The manuals are heavy depot clunkers, designed to be pushed, not self-driven. The power devices are very basic, mostly three-wheeled, with a large shallow basket in front of the tiller.

This brand used to dominate:
http://www.amigoshopper.com/products/motorized-carts

The ones delight appreciates so well look like


The Target carts offer a big basket plus a shelf underneath. That underneath shelf sports rollers on the corners, preventing naive users from getting hung up on displays. As with most shopping carts, the sear is very uncomfortable, with a low back, and they have undefeatable back-up beepers.

But these devices are only available for use within the owning store. Personally (some insurances will also cover) you can rent a powerchair/scooter from a durable equipment store. The drawback there is these rentals are hard-used, indifferently maintained, and generally bottom-of-the-line models.

a little late to the party, but

[anankastick]

I actually followed very similar advice for my first chair!

This got too long! I made it an entry: https://anankastick.dreamwidth.org/41314.html

Re: a little late to the party, but

[jesse_the_k]

No comment is too late, or too long :,)

You make a crucial point: a chair that doesn't truly fit is not worth having.

If one is lucky enough to be "average" -- in the U.S. this seems to be 5'-8", less than 180# -- then a stock wheelchair can work. But you're taller; my height is all in my thighs and not in my lower legs; some folks weigh a lot more. For folks like us a standard chair can be worse than none.

Clumsy body mechanics can create strain and dislocations. Incorrect body position can cause pain and degeneration.

[azurelunatic]

Know where your local used object sales/exchanges are taking place. Facebook Marketplace, Craigslist, Nextdoor, local Buy Nothing groups

Scope out powerchair repair places. Batteries are not cheap, but I've come across some remarkable Craigslist deals where the only problem was weak batteries. The ideal situation as a buyer is when someone has upgraded their own equipment and just wants the old chair out of the house because it's taking up space (or, much sadder) when the seller is the family member of a person who cannot operate a power chair anymore or who has passed.

If you are under 250 or 350 pounds, you have a much better selection of used and less expensive chairs available to you. If possible, get a chair where the specs generously exceed your own weight at its highest typical fluctuation, plus the weight of all the things you have to haul with you, including accessories that don't come standard. (I have never tried operating a rolling suitcase from a power chair but I suspect it's hard to get through many doors.) Coming close to the specs means the battery lasts shorter and it has a worse time with hills.

If you have needs that make the most common chairs in your price range unacceptable, it can be worth getting to know the brands and model information of chairs that do meet your standards.

Cane holders are amazing.

Thanks for these helpful additions!

[jesse_the_k]

If you're going to be using the chair outdoors a lot, spend for good batteries -- cheap ones can leave you stranded. (Especially important if you're operating below freezing.)

I've pushed a rolling suitcase in front of me, and you've identified why it's a royal PITA. It's the one time I actually ask people to open doors for me.

For bicycle safety, lights are now attached via a rubber strap. They are flexible and adjustable enough that you can (and should!) attach them to your wheelchair.