When you have a rare and complex disability like spinal muscular atrophy, time can be a very precious commodity — like diamonds, Labradoodle puppies or a really good Wi-Fi signal. Since many everyday tasks can take us longer to complete, like showering, eating and getting dressed, we tend to budget the rest of our time wisely and carefully. It’s an important skill to cultivate when you have a disability — otherwise you’d never get that term paper done, never balance your checkbook, and never have time to buy laundry detergent at the store.
Along with these everyday tasks, life with a complex disability comes with a lot of hidden bureaucratic demands that take up time. Between filling out ongoing forms for Social Security and state services, to coordinating between various caregivers, doctors and therapists, to following up on medications and equipment, it’s a vortex of bureaucracy that often keeps our lives in motion.
The time it can take to attend to this red tape is daunting. You know the hours it can take to prep and cook an entire Thanksgiving dinner? That’s a lot of time, right? Imagine having to do that several times a month — even when you’re tired, sick or just want to lay in bed and watch people get decapitated on “Game of Thrones.” That’s what it is often like for us, and we don’t even get any leftover turkey out of the deal.
Recently, I’ve had an extra bundle of fun (can you sense my sarcasm?) added to my usual list of bureaucracy. This task is at the top of my list of The Most Dreaded of All Tasks. In fact, I daresay it is the veritable Mount Everest of tasks a person like me must climb. And I don’t say this lightly because I literally can’t climb anything at all.
It’s the Trying-to-Get-a-New-Power-Wheelchair-Vortex-of-Hell.
Sure, it might sound exciting to get a new custom power wheelchair — to get a bright shiny new model with fancy features and leather upholstery that smells like a pretentious Italian shoe. But a new wheelchair ain’t a Prius, even though it can cost as much. They are also not so interchangeable as to be simply a matter of budget, taste and style.
As I’ve written on The Mighty before, these wheelchairs are built to our specific measurements and our medical needs. They are designed to maximize independence and health. They are the very tool of life. And when you have a complex disability like SMA, a small change in a wheelchair design or an error in a measurement for the seating can mean the difference between sitting comfortably and having a pressure sore on your buttocks. It can mean the difference between being able to drink a glass of water independently and not being able to reach the table at all. So a lot can ride on these devices and making sure they fit appropriately.
That’s a lot of stress — and a lot to add to our already-busy plates. So, it’s not surprising that people with disabilities are often not eager to get a new wheelchair when we’ve still got one that works well. But as time goes on, it can become difficult to get parts and do repairs. Plus I can’t speak for every disabled person, but I’d rather not go too long with a decrepit wheelchair that’s only held together by loose wiring, duct tape and human stubbornness. I think we’ve got enough of that in the White House.
Every seven or eight years, I begin this process anew. Given the price tags on these custom wheelchairs, insurance companies don’t make it easy to qualify for coverage. People with disabilities must jump through many hoops to get a power wheelchair. This is ironic because most of us who need these devices literally can’t jump at all.
First, my doctor must reestablish my need for a power wheelchair and reverify my disability — despite the fact that I’ve been this way for 37 years. It’s as if they think my genetic condition is going to suddenly disappear into thin air like Lori Loughlin’s career. Second, I must be seen by a special neuro-physical therapist who will do a head-to-toe functional assessment — which must corroborate my doctor’s findings and include an analysis of whether my mental state is good enough to operate a wheelchair without driving myself off a cliff.
After that, my doctor has to verify the special neuro-physical therapist’s evaluation and ensure it’s in full agreement with his recommendations. He then sends it all to the DME company, which is in charge of fitting me for the new wheelchair and making sure it’s functional. I’m fortunate that I have a long and positive relationship with my local DME (durable medical equipment) provider, Alan. He has been very accommodating and helpful to me over the years. He’s put up with my tears of frustration, my harassing phone calls, and my complaints about how ugly all their wheelchair paint color options actually are.
Insurance companies don’t make this process easy for DME providers, either. To be frank, they make it a giant pain in the ass, which has driven many DME companies out of business, which in turn makes it hard for disabled folks like me to get our rickety wheelchairs repaired or replaced. It’s the red tape nightmare that just keeps on giving, like a bad case of shingles.
Anyway, Alan came over a few days ago and we came up with an initial plan for my new wheelchair. This plan basically consisted of me pleading desperately:
“Alan, make the new chair exactly the same as this chair. Seriously. Like not even a centimeter difference. OK? You know the old fable, ‘The Princess and the Pea?’ I am the Princess. Trust me, I will know if there’s a pea under the mattress. I’m not kidding. There will be no pea in this wheelchair!”
Realizing I sounded slightly over-the-top, I coughed and added:
“By the way, would you like a cup of coffee? Perhaps you might need it now.”
It’s now up to Alan and his team to gather all his notes, the paperwork from my doctor, the assessment from physical therapist, and combine it all together to submit for insurance approval. Every “T” must be crossed, and every “i” must be dotted. If it isn’t, I will have to begin the process again — the idea of which makes me want to cry.
Here’s hoping the duct tape will hold out until then.
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Author: Elizabette Guéçamburu