Stacy Ellingen

Stacy's Journal: The Reality of Equipment

2019-07-01
By: Stacy Ellingen
Posted in: Stacy's Journal

Whether it’s getting a new car, a new outfit, new appliances, or whatever it may be, getting something new brings excitement to people most of the time.  Usually, people want to show the item off or tell others about it.  Depending on what it is, it’s often fun to try it out or play with it.  It’s almost human nature to feel some excitement when we get something new.  Sometimes, though, getting new things can bring on mixed emotions and can feel like a reality check.

Every five to ten years, I get a new power wheelchair.  I’ve used one since I was two years old, so I’m on my sixth one.  My current one is just over three years old, so I won’t be due for another one for quite awhile.  People are often surprised when I say that’s a good thing.  Most people assume getting a new wheelchair is like getting a new car.  When it’s time for a new chair, countless people tell me, “oh, you must be so excited to get your chair.”  I just smile and laugh to myself when I hear that because it couldn’t be further from the truth.

When people get a new wheelchair—especially a customized one—it’s often a several month (or longer) process.   First, if people rely on government benefits, which most people with disabilities do, you need a very specific letter justifying why you need a new chair.  With Medicaid, a new chair has to be less expensive than the repairs and modifications needed to fix your current one.  Getting that letter from your Durable Medical Equipment (DME) provider isn’t easy.  They have to specify every single thing wrong with your current chair, explain in detail what modifications are needed, and why a new chair would be more beneficial for you.  It often takes at least a month to get a response from Medicaid.  If they say no or have questions, the DME provider has to submit a response again and wait another month to hear.  Once you finally get a yes, you then have to meet with your DME provider and often a physical therapist to determine what specific chair and features would be best for you.  Based on that, you have to meet with your primary doctor to discuss the features (it has to be in the case notes that you specifically discussed it) and get a prescription for a wheelchair.  The DME provider then submits all the paperwork to Medicaid again and we play the waiting game again.  This process takes a very long time—especially if you have customized features (elevate, tilt, recline, etc…).  Eventually, when Medicaid comes back with a decent compromise (you likely won’t get everything you want—even with justification; I was denied the elevate feature on my current chair), the provider then finally orders your chair.  At that time, depending on the type of chair you get, if you’re lucky you get to choose the color of your wheel fenders.

Once the chair ordered, it takes another couple months for it to come in.  When the DME provider gets it, they assemble it and modify it to further meet your needs.  Finally, you setup an appointment to get your new chair.  Sounds exciting, right?  Not really.  It’s actually a pretty stressful day.  With you there, they make even more adjustments and modifications based on your body and ability.  For many people, including myself, it’s very hard to adjust to a new seating system.  Even though, our posture is likely better in the new chair (because in many cases that’s one of the main reasons why we end up getting a new chair), our bodies aren’t used to it.  In fact, many times, people have to ease into using their new chair because it’s so overwhelming on the body.  It definitely takes a couple weeks to get used to.  While, yes, it’s eventually kind of cool to show people your new chair sometimes, I don’t consider it fun.  It’s frightening to think about what my life would be like without the invention of power wheelchairs, but, having said that, I’d give anything not to have to rely on one!

Power wheelchairs aren’t the only equipment I now rely on.  In a past entry, I mentioned that I had to get additional pieces of equipment a few months ago.  I received a Hoyer lift and a shower/commode chair.  While it didn’t take quite as much time as power chairs do, I had to go through the same process.  This equipment allows for safer transfers and better hygiene.  My mom, dad, and sister were all with me when my DME provider delivered the Hoyer lift.  The Rehab Tech trained them on how to use it, and then my mom and sister spent a day training my staff on it.  This probably sounds very petty, but having the lift brought into my apartment wasn’t easy for me.  Besides my adapted computer table and desk in my office, I didn’t really have any special equipment.  To simply put it, my apartment looked pretty “normal.”  Even though I know they’ll help me be able to live independently longer, bringing two additional pieces of equipment in was a reality check for me.  It was a punch in stomach realizing that I need these things to live.

Sometimes, getting new things isn’t always fun, but often, it’s necessary.  This is the case for people who rely on medical equipment to literally survive.  While getting new medical equipment or assistive devices isn’t necessarily fun and can come with mixed emotions, it’s part of life for many people living with disabilities and health conditions.  It just makes it that much more special when we do get those fun new things! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

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Beth Ellingen
07/02/19 09:08:24PM @beth-ellingen:
This was a great read for me, Stacy! Thanks for sharing some very real sentiments about new equipment.
Jason Endres
07/02/19 07:16:05AM @jason-endres:
I also feel the same as you do. I often will do my homework looking at all the websites of power Wheelchairs, before going to the doctor or talking DME provider, and I still get questions why do you need this, or Medicaid is never going to pay for this.
Stacy Ellingen
07/02/19 12:33:55PM @stacy-ellingen:

Totally agree, Jason. I research as well, but it often doesn't pay because such specific justification is needed.  I guess by researching we have an idea of what to at least try for.  


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