Jul 21, 2011


The above photo is what a Prone Stander should look like.

Below is what we have.

Yes Baby this is a funny antique

This sucker is so vintage that it has a name etched on it of one of the previous owners. I happen to know this name as I was her nurse at hippotherapy camp years ago. She is now a sophomore in college.

With the exception of a wheelchair, there is no other piece of assistive technology that is more beneficial to children and adults with special needs than a standing device yet most insurance companies won't pay for one

The Baby is supposed to be on the Medicaid Waiver program that ALL children with cerebral palsy qualify for the day they turn three years old but for the past 10 years that program has gone to hell with an approximate 7 year wait list and over 10,000 disabled children in the state of Florida waiting. This means (just in case you didn't do the math) that they are 10 years old before they get services they qualified for at three years of age.

When The Teenager turned 3 she became eligible on her birthday and is still on the program.

My how things have deteriorated in 14 years.

I am not ungrateful for the antique we have been using and you all know how I adore vintage everything but The Baby is outgrowing it rapidly. My only hope of obtaining a new prone stander is by forking out between $1,400 to $2,000 dollars and buying one out of pocket.

But wait a minute. There seems to be a hole in my pocket...

Wheel chairs are another dilemma.

Over a year ago we ordered a wheel chair for The Baby. It arrived fairly quickly, that is within 4 months. Or maybe it was six months. I really should pull my "wheelchair" file so I can be completely accurate but it's like pulling your "divorce" file out. Who wants to re-hash those details?

It became immediately apparent upon the arrival of the purple wheelchair that we had underestimated The Baby's ability to self propel. She sat in the chair, took off, and began going in circles because of her left sided hemiparesis.

One would get dizzy just watching her.

At this point our beloved Occupational Therapist suggested a "one armed drive." In my many years of experience I had never dealt with a one sided paralysis and so this was a brilliant new revelation for me. I called the wheel chair company immediately and requested a one armed drive be attached to her chair.

I called.

And called.

And called.

Months went by and I was finally informed I needed a "justification" letter from OT. I got the letter immediately.

I waited.

And waited.

And waited.

Finally last week when I was cranky and sick I called and told them I was cranky and sick and I wanted an answer and was not hanging up. Thirty minutes later I got an apology. They had...and I quote..."let the ball drop"... regarding the Baby's one armed drive.

Yes! They actually admitted they had screwed up.

They promised to call me back by Thursday.

You guessed it.
No call.

On Monday I left a message on their voice mail. I will not go in to detail but i believe they understood that we were no longer best friends forever.

Today I get a call stating that Vick would be at my house within an hour with the loaner chair and the one armed drive because you see it's not enough to have a "justification " letter from an occupational therapist and diagnoses from a pediatrician they also have to video tape the child proving that they can actually navigate the one armed drive system.

But not on the wheel chair they are already accustomed to. On a completely different loaner char that will be "comparable" in size.

As it turns out the loaner chair tire's are 4 sizes bigger than The Baby's and the one armed drive is...whoopsie daisy...tee hee hee...installed on the wrong side.

No, people I do not make this crap up.

Vick man had never changed a one armed drive from one side to the other but attempted it and completed it successfully in my living room while the Baby applauded him and "uh-oh'd" him every time a nut or bolt went rolling across the tile floor.

The Baby has no lip closure due to the cerebral palsy so she kept referring to him as "Tick."

"Yay, Tick!"

Vick told me he'd be back in 3 weeks when The Baby got used to the one armed drive to video tape her so he could submit the tape to Medicaid for approval.

That is until he saw The Baby peel out in the loaner chair, bang a u-turn and streak off towards the narrow hall way.

"I think you should tape her now," I suggested.

"Maybe I'll video tape her now" he replied.

And he did.

So now we wait for the one armed drive. Again.

In the meantime I'm calculating how much lemonade we'll have to sell so we can afford a new prone stander.


Elizabeth said...

This might be one of my very favorite posts that you've written. And all I can say is: Good god.

Birdie said...

I am speechless. This is so horribly wrong. I can't figure out how we as humans can let things get this bad and worse. I can say I hope it gets better but hoping doesn't do much these days. (((hug)))

Zoey's mom, Heather said...

I am with Elizabeth.Great post

Infact Elizabeth saw Zoey in her new little number yesterday. Cute but I think I hate this 5,000 dollar piece of.. um.. equipment! They put the wheels in front so she could maybe self propel, due to her hemi and well, if she does attempt... you guessed it, circles. Her feet get stuck in the sides, the handles are the weak link and over all, again cute but..

I wish our system was better. I wish we didn't have to fight the machine.I wish, I wish, I wish... story of my life.

Hoping praying for the right stander for The Baby.she deserves no less.

Anonymous said...

Does the vintage model work? Because it looks like it wouldn't be that difficult to build. The newer one with all of the tubular - no doubt lighter frame work, yes - but the older one? Is there an old codger woodworkers club in the area? I just think that a retired guy or gal in a garage someplace is waiting to help you out. Could you post a photo of that at the local lumberyard with a plea? Just thinking out loud here, wish I were closer. I'm no builder, but I know a little about how to help other people release the goodness of their hearts.


Anonymous: I think it worked great. I'm not fussy about high tech and used this willingly but she is getting way too tall for it now. I'm with you. When you see this equipment and how much they charge for it and how uncomplicated it is....wheel chairs, for instance, run a minimum of $5.000 for these kids. The mark up is terrible.

Anonymous said...

Are you bald yet? Because I think I would have pulled out all of my hair by now:)

It shouldn't be so hard.

Anonymous said...

How about checking with my sister or other parents who may have one that their child has outgrown?
Ms. M

Big Daddy Dr Weeds said...

Now I know why I havn't heard from you. I have some stuff but I need a better pic of the chair . We used to have one. I will have to look in the archives or garage. Maybe when my head clears .

Melinda said...

You cannot make this Sh** up. I am a social worker in California so i know about a system that isn't working. I'm so sorry for these ridiculous hoops you jump through. As i've said before you are straight from Jesus, a saint of a woman. So glad i stumbled upon your blog.

Anonymous said...

When I taught in a public school in Tampa, my students had to use these as well. They do work as well as the newer models, however, when they begin to outgrow it, they become extremely dangerous. It took 4 months (which was quick in our world) for my student to get a new one because I refused to place him in it for fear of him flipping it when he got excited... public schools at their best!
Good luck to you!

Kathleen Scott said...

Oh my word. I can't imagine finding the patience for this.

Buy a lottery ticket. Surely god will blow the balls your way.