A Wheel Mystery

20130709-005428.jpgNo one wants to use a wheelchair. It’s a tool to help a person do something or go somewhere they otherwise couldn’t.

And it’s the view of it as a tool that has allowed me to change my perspective and expectation both of the machine itself and my need for one.

In the spring of 2012, Seth and I recognized that I needed a set of wheels so there would be no retail store or mall that was off-limits. Big box stores often have electric or manual wheelchairs to borrow; otherwise, it’s every man for himself.

We purchased an affordable, lightweight folding transport chair which fits in its own duffel bag. Compared to no chair, it’s been great. We’ve used it quite successfully in the mall and to trek through the airport instead of waiting on slowly dispatched, private airport employees.

But with tiny wheels and a mostly fabric frame, the transport chair is to a wheelchair what a travel umbrella is to a golf umbrella. You may recall this post from March where Seth and I had to borrow a full-sized wheelchair to make it through the streets of Boston in one piece. The transport chair is great for indoor corridors, but that’s about it. It bulks at parking lots, sidewalk ramps, and even the errant power cord.

With that knowledge, the search for a new wheelchair began. We needed something lightweight that Seth can easily load in and out of the cars. (I don’t want “unloading the chair” to ever deter us from doing something fun.) But it still needs large wheels that will handle whatever (reasonable) terrain we throw at it. I would like to be able to stroll the Boardwalk this summer, for example, and that’s not happening unless I have a “real” wheelchair.

Seth searched high and low and finally found the perfect chair: the Ergo Flight Ultralight Weight Wheelchair by Karman Healthcare. Here’s their spiel:

In today’s market, people are tired of the heavy wheelchairs that were meant to promote mobility to disabled or mobility impaired individuals. Where mobility and ease of transportation were meant to be the primary importance of manufacturing a wheelchair, somehow manufactures got lost on what was most important to the people using the chairs. Karman proudly announces the product that will redefine ultralight weight at the most competitive price. We did this by mixing a competitive metal (Aircraft Grade T6 Alu) with the most efficient geometry possible in designing a wheelchair. What we get is a functional wheelchair that slashes price on any Titanium wheelchair driving economy directly to the homes of individuals that wish to have the ultimate mobility wheelchair possible.

And as durable medical equipment goes, it’s not THAT expensive. The MSRP is $1,437, but it can be ordered from an online dealer for $749.

Now, $749 is a lot of money for any patient to pay for a wheelchair. And that’s why I’m thankful to have excellent insurance. Well, almost.

You see, my Aetna point-of-service insurance has been top-notch 95% of the time. I haven’t struggled to get a single procedure or hospital stay covered. (This is also a great testament to my oncologist’s office.)

Of course I try to be a savvy patient and am very careful to keep everything in network. Sure, I must pay several thousand dollars each year until I hit the maximum out-of-pocket contribution. That’s just the way health insurance works.

But I never struggled with Aetna until I tried to buy a goddamn wheelchair.

You see, insurance companies think you should get the $50 wheelchair from Walgreens. Or the one that the hospital might provide you after you fall and break your hip. Insurance companies think wheelchairs are steel traps used to push someone from the bed to the commode.

And quite frankly, a 32-year-old woman shouldn’t need a wheelchair. She shouldn’t need something that’s easy to take in and out of a tiny car so she can go to the park for the day.

Certainly there are young adults who have wheelchairs, but aren’t most capable of pushing themselves along? Those are wonderful, admirable, strong people who wear their wheelchairs like badges of honor. They play wheelchair tennis and wheelchair basketball, and do more in a wheelchair than I ever did with cancer-free lungs! Those are the young adults who earn nice, special wheelchairs.

But I’m not that. And luckily I don’t need to be pushed from the bed to the bathroom, either.

I need a wheelchair because I can’t walk very far. And because I need good back support if I’m to be out of bed all day.

I need a better wheelchair so I don’t feel embarrassed when mine nearly collapses while going up a little incline… Or so I don’t have to stand up while Seth pushes it over a the tiniest bump in the road.

My hope is that Seth and I will both take pride in my new vehicle and its ability to take me anywhere I want to go (Boardwalk included!).

So what’s the hold up?
We can’t figure out how to get Aetna to pay for even part of a wheelchair. Yes, we have a prescription from my doctor and the correct medical codes for an ultralight wheelchair with great back support. But there are no Aetna-participating medical providers who stock this manufacturer. And if I can’t use an in-network provider, I will have to pay everything out-of-pocket.

Seth and I are trying, with all our might, to put a local Aetna provider in touch with the manufacturer who lists said company in their “dealer locator.” We visited in person to provide the prescription and copies of my insurance and ID. And since then I’ve phoned every 3 days for two weeks. Unfortunately, I’m only told that the owner needs to deal with it, and he seems to be on vacation or out sick every time I call.

I realize it will take someone special at this local company who really wants to go out of their way to help me. They would order special order the chair (which they should be able to do since Karman Healthcare lists them as a dealer) and then bill Aetna on my behalf. Unfortunately no one there will yet acknowledge that they are a dealer. (sigh) Finally, Aetna would agree to pay x% of the wheelchair, and I would pay the balance to the local company.

At this point, I’m not even concerned about what that x% might be. I would just like something to be covered. Is it “the principle” of the matter? Nope – it’s the cash! I’ve threatened (myself?) many times to just break down and buy the damn thing online. But no, stay strong, just call back in another 3 days… Maybe I’ll only wait 2…


5 responses to “A Wheel Mystery

  • Sjoukje

    Fingers crossed that they will come up with some part of the money!!! Hope it all works out!!


  • dwilliams066

    I don’t know why some things that are so obviously the right and logical thing sometimes seem to be so difficult. If anyone can do it, you can. I was planning to get a transport chair based on your experience, and thank you for the information and research you and Seth have done on this wheelchair. I’m fighting my oxygen supplier for a portable concentrator at the moment, but the wheelchair will likely be my next goal. I’m rooting for you!!

  • Sabina

    Hi Jessica,

    I have learned something today. Never having needed a wheelchair myself, I never investigated what is available in terms of features, functionality and cost. It makes sense that most of the lightweight, portable, cheaper ones wouldn’t be able to handle the “outdoors”. Your foldup -vs- golf umbrella analogy is very clever. I’m glad you found such a fantastic portable that can handle the outdoors. I have decided to be optimistic that you will be able to persuade the local supplier to special order one for you and recoup part payment from your insurer. The first step is, as you say, getting to speak to the man who can make this happen. Here is my suggestion…

    Never under-estimate the power of perseverance. Calling once every three days is not enough to motivate a “gatekeeper” (receptionist, executive assistant, other minion) into helping you by putting you in touch with the man with the power. I would start calling them every day – at a different time each day. Use a landline and block the “caller id number” if you can so they won’t be forewarned it’s you calling. Gatekeepers learn to recognize the number of regular callers. In my country, you can do this by simply dialling four prefix numbers before the actual number you are calling.

    Before each call, mentally prepare yourself so that you will remain calm and friendly no matter what kind of reception you get. Remember, the gatekeeper may not even know your story. They are just acting on orders or company policy. Think of it as a game in which you don’t particularly care about the outcome. If they don’t put you through today, you will be no worse off than you were yesterday, so there is no need to get frustrated or upset. Get the gatekeeper’s name and remember it. Next time you call, ask “how are you today, xxx?” Try and make them your ally. Even the most hardened gatekeeper will buckle under daily pressure. Whenever you get an excuse such as he’s out, politely ask for a definite time when he will be back and make sure you ring back at that time. Hopefully, it won’t take too long for the gatekeeper to let you through. Most people hate having to tell lies on a frequent basis (such as saying he’s out when he’s in) and they may get fed up enough to plead with the boss to at least speak to you.

    I apologise in advance if you find my advice tedious. I’m a chronic “helper”. I just can’t help myself. I no longer get hurt or annoyed if people choose to ignore my advice, since I now have a better understanding of human motivation, includng my own. I will say a prayer for your desired outcome… regardless of how it is achieved.

    • Jessica

      Hi Sabina,

      Thanks for taking the time to write and for your eternal optimism!

      Your attitude about calling is SPOT-ON! I always kill them with kindness. After all, we have no way of knowing what someone’s day is like before they pick up that phone. I do rather good in writing down names and developing those relationships. Even with strangers, relationships make the world go around, don’t they?

      Your advice is wise, not tedious. That said, I think you and I are already of the same school of thought. Hopefully you saw the more recent post. Although the local company wasn’t able to help, someone else was! A generous mother of one of my closest friends decided that she would BUY THE WHEELCHAIR FOR ME. I’m just in shock. And so relieved! I thought the whole summer would dwindle away before I finally got some real wheels!


  • kimmywink

    Janet at grayconnections.wordpress.com seems to have some insurance company haggling experience. You two connecting might be a positive thing.

    But… How can I help?

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