Saturday, September 19, 2009

D.M.E.......or "Durable" medical equipment....


Faith and her baby cousin, Aiden, in her new "temp" chair.

I am posting a blog here in response to a blog over at Dr. Boucher's blog TherExtras ( . Dr. Boucher had been discussing selection of wheelchairs/standers and the like . So I decide to put my two cents in and discuss our experience with the dreaded DME. (Go visit her great blog!)

I apologize in advance, for the long post.....

First off.... Faith has had about 3 things in this category ordered for her since birth. All in the first yr and a half of life. All from different providers, All with problems. A stander (way too big, she was 16lb when it was ordered and when it arrived it would fit a child over 100lbs!!!) A Britax Traveller...(also too big for a one yr old, really w/ our experience, although great for her now, four+yrs later) and last but not least a small bath chair for her before she could sit up (NO complaints about this piece! LOL!)

Now, on to our wheelchair experience... the heart of this blog.

We were approached by our original PT about 2 yrs ago about getting a stroller system for her b/c she was getting too big for an umbrella stroller. We were still in the "issues" faze and were resistant to getting a wheelchair or anything like one. So we procrastinated, lost our PT, got a new PT, Faith got bigger (bigger Too quickly) and before we knew it last year in NOVEMBER we were in a bad way for something to move her around in.

So we approached our PT, who was not really informed about all the potential options/styles/vendors/choices. After 2 months of begging we finally got her to bring in the DME comp. that our therapy place works with. A few more months passed, another meeting, and a lot of discussion about wheelchair vs stroller style.

We did A L O T of research on our own b/c we were not provide it through ANYONE else. Trouble was in our small part of the world there are no Vendor showrooms, hospital chair clinics or even any demos to try out. More time passed, we had chosen one that we liked and thought would be a good option for Faith. We chose the Convaid Convertible chair, a stroller type wheelchair that folds up like an umbrella stroller and also has removable wheelchair wheels. Our thinking was that we could fold it up (very important) but she could still have the potential to learn to use it like a wheelchair. We DID A LOT of research, did I mention?
Now, I will say that our mobility co. did expose us to a Quickie brand wheelchair that they were delivering for another client, but nothing else until we became insistent to try something out.

The problem lay in that our mobility co. wanted her to get a regular standard ole' wheelchair and we wanted the Convaid. Our therapist, at the time, was no help, throwing her money wrench into the mix with the suggestion for a power chair! (NOT appropriate for Faith, who has poor fine motor skills)

Well, miracle of miracles, they finally got their hands on a demo of the Convaid and let us BORROW it for a few weeks. We loved it and were sure that it was what we wanted. So we laid down the line and insisted on this chair. We asked for a purple Convaid Convertible with the double flap trunk support strap and the clear tray so that she could use it during speech therapy. Basically, that was it. Oh yeah, and the issue about size! After using the stroller (12 in model, smallest they make) we were concerned that she might not make it 5 yrs in that size (required amount of time that TEFRA says we have to keep the chair). The equipment guy assured us that she would not outgrow it commenting that he didn't for see her growing that much in 5 yrs!!!! Mind you Faith is perfectly average in every way regarding size EXCEPT her head! LOL! So the chair was agreed upon and the requests began.

Doctor prescrip required stating the ridiculously specific info about the chair and why we needed each piece. Medicaid/TEFRA approval required for the ridiculously specific info for each and every piece on the chair. Ordering for the ridiculously specific chair, which was supposed to take no more than 2 weeks!


After a ridiculously long post, we finally got the chair last Friday! After our request to TEFRA were denied based on their insistence that they already bought us one (they did NOT, although they did rent us a special wheel chair when Faith was in double leg casts in Feb. for 30 days, at a total cost of $155) Anyone out there know where you can buy a ped. wheelchair for $155???? Give me a call, PLEASE! After "they" (unknown organization/gov. agency/Convaid) lost our order 3 different times.......... we did get the chair!!!!

Trouble is..... the FREAKING chair IS TOO SMALL!!! Faith's hips came to the absolute edge of the chair, her feet went to the next to the last notch in the foot plates and her shoulders went to the last notch for the shoulder straps in the fancy multi positional padded three point harness system (that we DID NOT ORDER). Now Convaid does say that it will hold a child up to 66 lbs in this transport model. Faith is 42lbs, 42in tall! Oh did I mention that the tray was no where to be seen, the arm rests were also missing?
Explanation....... well, we only have a few.... the armrest story was that when it was initially ordered they were standard but by the time we were lost 3 times they were no longer standard! Now who has ever heard of a wheel chair without armrest. That's like a wheelchair w/o wheels!

So after a ridiculously long post..... we are here.... they agreed to take the chair back...(Praise GOD) and graciously agreed to include armrests at no additional cost! ( Thank you, oh glorious Convaid, I will be remembering you in my will!).
And they say.....all of this should take less than a month! We will see.

I will say the chair is exactly what we wanted, barring the errors. And if you check my last post, within two times of Faith being put in the chair, she has learned to use the wheels! We are excited to get the right one, sometime in the next 100 yrs.....wait should we have gone 2 sizes up?????????




Anonymous said...

Aw, cmon, Candace, tell us how you really feel. Your frustration is not funny. Sadly your experience is not uncommon.

Research can provide you a lot of information, but trusted professionals can give you insights and opinions. Even in rural areas there are people who will go the extra mile for a parent who is knowledgable.

I sure hope your next equipment experience is better.

(Thanks for referring to my blog.)


Amy Genn said...

Hey Candace, can you send me some pics of her bath chair - we are starting to look for something for Eli.
Thanks, Amy

Cjengo said...

Thank you Candace your insight helps so much.

Jude has cluster seizures that do not need intervention due to any type of lack of oxygen so we don't call the neuro that much. Sucks!

BusyLizzyMom said...

Good for you for holding your ground but what an ordeal. It is hard enough to come to the mindset of purchasing a wheelchair for your child but to hit as many hurdles as you did would put most parents off. Barbara did have some great posts regarding choosing mobility equipment. We just recieved Elizabeth's pink ti lite wheelchair and I think the process took 6mths, I was hoping to have it for the summer but no luck.