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

[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!