DOING THE DME SHUFFLE

Let’s talk about a tricky dance with a lot of steps, and I’m not referring to the tango, waltz or minuet. It’s a dance familiar to everyone who uses a mobility device and has health insurance. I’m talking about the DME shuffle.

 

DME stands for “durable medical equipment,” the jargony moniker used by the insurance industry to refer to equipment like wheelchairs and scooters. It also refers to things like oxygen tanks and CPAP machines.

 

I’ve never worked in the insurance industry so I don’t know its inner workings. But I’ve been a consumer of insurance coverage for decades, so I’m an expert of sorts on navigating from the outside of what feels like an impenetrable, byzantine system. And despite my years of experience, I never cease to be amazed by its frustrating unwieldiness.

 

Take wheelchairs, for instance. I’ve been a wheelchair user for 30-plus years. I need one to traverse distances of more than four or five feet. Simply put: I gotta have a functioning wheelchair about 16 hours of each and every day, or I’m screwed.

 

Most of the time, it’s cool. But things get real tricky when it becomes evident that my chair is getting to the end of its life span. One can only repair and hold something together with chewing gum and paper clips for so long.

 

I can’t predict when the chair will crap out for good. And because it’s essential to my most basic functions, I don’t want to wait too long. Why? Because acquiring a new one is about a six-month process.

 

The process begins with getting a prescription and a letter of medical necessity from my doctor. Since he’s busy guy, I supply him with the essential info and suggested language he needs to write them. Once I’ve got these documents in hand, the real fun begins.

 

Insurance providers typically subcontract with other companies to provide DME. The DME provider’s bread and butter, though, is primarily diabetic supplies and off-the-rack walkers. When it comes to wheelchairs, they try to push the bare bones basic, one-size-fits-all variety. Give them your height and weight, and they’ll order you a small, medium or large. Those are fine for the retiree who needs one only for trips to the mall or county fair.

 

But I use a chair many hours every day. I must be evaluated by a rehab professional to determine the type of chair that can accommodate my functional limitations and ergonomic needs. The seat must be high enough from the floor so I can stand up unaided. The back rest must provide comfort and support in the right places. I need a seat cushion that supports my posture but doesn’t aggravate my chronic sciatica. The underside of the chair must accommodate a large bolt that can lock the chair into my van’s tie-down system. I’ll spare you the remaining details.

 

My very real needs are at odds with the one-size-fits-all DME system. This means I must steel myself for a protracted back-and-forth with the insurance provider. It means many months of responding to requests for information and waiting for approvals that allow me, video game-like, to advance to the next level. Months of whistling through the graveyard that my faltering chair will continue to work.

 

It seems that, even if a wheelchair is essential to my ability to function, I’m supposed to have only one at a time. A back-up second power chair is frowned upon.  Apparently, insurance coverage does not mean ensuring I will never be without a working chair so I can go to work or the grocery store.

 

And heaven help you if you need a power chair sometimes and a manual chair others. For instance, I cannot independently propel myself in a manual chair. I need a power chair to get around on my own, but I also need a ramp-equipped van to transport the power chair. When my van is in the shop or not practicable for a trip, I need a lightweight manual chair because that’s the only kind that can fit in the trunk of a car. Insurance companies don’t seem to get that. I once had an insurance company employee on the phone ask me which is my primary chair: power or manual? My efforts to explain why both were essential were in vain. Barely containing my frustration, I asked them woman which was her primary leg: the left or the right?

 

With each passing year, I become a bit more adroit with the DME shuffle. But I really, truly wish I could simply mix myself a caipirinha and change up to a gentle samba.  

The Most Dreaded Disease of All

I like my breasts. I truly do.

They’re nothing special -- certainly not Playboy caliber. But they’re mine. And I’d like to keep them healthy.

Which is why I was disturbed the other day when I passed by a pink mobile mammogram RV. It was parked on a public plaza to motivate women to stop by and have breast imaging done.

I’m all for that. Anything that can detect cancer early on is a godsend. But what stuck in my craw were the four steps at the entrance of the RV. I circled the vehicle but saw no ramp.

I guess the message is this: access to medical care doesn’t necessarily include access for folks with disabilities.

In the interest of full disclosure, I’d already had my annual mammogram done at a world-class cancer clinic. But I thought about other women with disabilities in my community who, for whatever reason, may not able to go to a conventional facility for imaging. Shouldn’t they be able to stop in and get services at the mammogram RV, like anyone else?

It got me thinking. I thought back to my mammogram the previous month. Although the machine’s height was adjustable, there was no way I could have contorted myself into position without standing upright. Because even though I use a wheelchair as my primary means of mobility, I can stand and walk a few steps.

What about others – such as women with spinal cord injuries -- who cannot stand up for a few moments to complete the imaging? And why aren’t people designing imaging machines that are accessible to people with disabilities? If such machines exist, why wouldn’t a major cancer clinic with a stellar reputation have one?

Then I remember how, a couple years ago, I needed a breast ultrasound to supplement the mammography. That same clinic’s ultrasound rooms were so small, I had to park my wheelchair in the hallway and walk into the room to have the test done.

This made me angry, which then jogged my mind further. I remembered how I’ve been going to the same rheumatologist – a wonderful doctor whom I adore -- for 13 years. And though his clientele consists primarily of arthritics who have chronic pain and struggle with limited mobility, none of his exam tables have adjustable height. Should he need me to get up on the table, I would have to either pole vault onto it, or be lifted by a couple of his staffers. Both options are unpleasant and quite frankly, should not even have to be considered.

More memories flooded my brain. I recalled my week-long hospitalization after major hip surgery last year. My room was located on the orthopedic unit, yet the bathroom was inaccessible to me. My surgeon allowed me to get out of bed and use the commode -- even encouraged it. But I couldn’t because the hospital could not provide a garden-variety seat riser. I was also denied a shower because the bathroom had a tub shower but no transfer bench.

Access to health care, from financial and even geographical perspectives, is challenging enough as it is. Why should folks with disabilities have additional hurdles that make them struggle for -- or even  forego -- medical care in one of the most prosperous, developed countries in the world?

I ask the question, yet I already know the answer.

Because ableism -- discrimination in favor of able-bodied people -- is as prevalent and destructive as cancer has ever been.