All I Want is an Easier Way to Get New Durable Medical Equipment
by Blog Writers
Editor’s Note: This blog shows the complex systems disabled people have to navigate just to receive the equipment they need to live. Have you experienced something like this? Share in the comments!
By Mike Ervin
You could say that 2023 was The Year of Receiving New Durable Medical Equipment (DME) for me. I finally took delivery of a lift (a.k.a. Molift Smart) so that now my assistants can transfer me by basically pushing a button. I also finally took delivery of a commode that can be slid across a detachable rail into my adjacent bathtub, where it becomes a shower chair. Now those same assistants can just slide me from toilet to tub and back, no lifting required.
But you also could say that 2022 was The Year of Jumping Through a Lot of Flaming Hoops in Order to Acquire Durable Medical Equipment for me. About 18 months passed between the day I began the process of acquiring my new DME and the day I took possession of it.
I suppose the process would have gone a lot faster if I had enough money to pay for my DME directly. But I just assumed I didn’t. I don’t even know how much my DME cost. I just assumed that it was grossly overpriced, as DME tends to be, and thus far beyond my range of affordability. I tend not to even think about researching DME or other assistive technology that might make my life better for the same reason I never go shopping on the swanky Magnificent Mile here in Chicago. I figure all I’ll be able to afford to do is window shop. Some people find that to be enjoyable. It motivates them to achieve their aspirations. But I find it to be depressing and frustrating. It’s a cold, harsh reminder of how far I am from where I thought I was.
So, I turned to the Illinois Department of Human Services for help. My counselor (fancy name for social worker) said I had to begin the process by getting an evaluation and referral from a therapist. A physical therapist and an occupational therapist came to my home and took a lot of pictures of my bedroom and bathroom. I already knew what kind of DME I wanted so all the therapists did was put together a multi-page report (complete with pictures) detailing why I needed this type of DME and recommending that DHS purchase it for me.
The Molift Smart
A few weeks later I contacted my DHS counselor for an update, and she told me that she now had to put the referral out for bidding. That meant that she had to invite several DME dealers to tell the state how much they would charge to supply me with the DME.
A few weeks after that, my counselor informed me that the bidding process had run into a snafu. Only one dealer responded, and she had to have at least three bids to submit to her higher-ups so that they could select a winner. She said she felt as if she was at an impasse. She didn’t know how to proceed. I finally convinced her to submit the single bid to her higher-ups and explain to them that although only one dealer responded, I still needed the DME. But, she said, before she could do that she had to submit a claim to my insurance because, even though we both knew that the DME wasn’t covered by my insurance, she would need an official rejection from the insurance company stating that this type of DME wasn’t covered to submit to her higher-ups. Otherwise, she said, they would probably kick it back to her and instruct her to submit it to my insurance first.
It took a few more weeks for all that to play out. And then, a few weeks after that, my DHS counselor informed me that we’d hit another snafu. She said her higher-ups instructed her to begin the bidding process anew, this time for a cheaper, lower-end lift that my insurance might cover. I told her to please explain to her higher-up that a lower-end lift would not meet my needs. I told her some of the reasons why. She said she would plead my case to her higher-ups, but I would first have to get a note from my doctor explaining that I needed the type of DME I was trying to get the state to buy and why.
My doctor and I have been through this many times. Whenever I’ve gotten a new wheelchair or a wheelchair repair or some other kind of DME, he’s had to supply a note of medical necessity. He finds this to be very amusing because he doesn’t know squat about wheelchairs or wheelchair repair or any of the stuff that I need, but he figures that I must need it or I wouldn’t be asking him to authorize it. So I give him very explicit instructions stating exactly what I need him to authorize and he crafts a note authorizing it. And the next time I see him I explain to him what he authorized.
Well I finally got the state to pay for my DME. And now I’m just praying that it never breaks; I fear that will set me off on another dizzying odyssey, like when my wheelchair breaks. When that happens, I call one of the two behemoth companies that sell and repair wheelchairs that are still in business in these parts. I usually know what’s wrong with my wheelchair. I just don’t have access to the parts that will fix it or the wherewithal to do the repair. So the repair people at the wheelchair company offer me their first available appointment to have a repair guy come to my home and officially diagnose what’s wrong with my chair, which is usually anywhere from two to six weeks up the road. The repair guy comes over and confirms what I already told them was wrong and then the weeks-long process begins of the wheelchair company sending a claim to my insurance company (along with my doctor’s authorization) and my insurance company deciding whether or not they’ll pay for the repair — and then the wheelchair company ordering parts and when the parts finally arrive the wheelchair company arranging another appointment for the repair guy to come back out to my home and fix my wheelchair.
This is why I always hang on to my old wheelchair after I get a new one and keep it in a closet as a backup. I know that when my new chair breaks, it’ll be out of commission for several weeks.
So here’s hoping that 2024 will be The Year of No DME Breakdowns for me.
Mike Ervin is a writer and disability-rights activist living in Chicago. He is a columnist for the Progressive magazine and writes the blog Smart Ass Cripple.