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Two Steps Forward and…

July 23, 2011

one step back

Friday morning something impossible happened in the van on the way to camp.

For ten days we’ve been trialing a medication for Hope’s ADHD.  The good news is that we found one she can ingest by chewing. The bad news is that with soccer camp every morning this week, I was only eye-witness to the first three days of the trial (crazy) and to the effects every afternoon after it wore off: an increase in impulsiveness, anger, and melt-downs compared to even a ‘bad’ day pre-medication.

Friday morning we were half way to camp when  Hope discovered she was not happy with the way she had tied her cleats. Or the way she re-tied her cleats. Or the way she re-tied them again. No matter what she did, she could not get the flap to lay flat enough to feel right. And she could not move beyond the fact that it did not feel right right now. Never mind that she could take off her shoes and I would help her tie them right at camp. No matter how calmly I re-assured her, she was escalating toward a pull-off-the-road-meltdown over shoelaces. Except about half-way to thrashing and screaming (being trapped in a seatbelt sends her there faster than anything else) Hope plateaued. And after about ten minutes of perseveration she decided she would live until we got to camp even if her flaps were not flat, so relaxed in her seat and sucked her thumb.

Then Friday afternoon, after camp, I read this note Hope’s coach wrote inside a card with her team photo: “Hope, You are one of the sweetest players I have ever had the privilege of coaching in all of my 10 years here! Your willingness to play every game we had for you mixed with your tender, kind words & smiles was amazing! You did do well all week especially in the heat and storms!”

Her coach got the best three hours of Hope’s day, before the med hit half-life in her system. I’m very curious to see how this next week unfolds at home.

And one step back.  Or, When is a Wheelchair not a Wheelchair?

Joy in her demo-model 'transit option'

Today the letter arrived informing us our insurer has denied authorizing Joy’s wheelchair because  it is not a wheelchair (covered), but a “transit option” (not covered). Hmmm… I guess she has other ‘transit options’ like army crawling to get around the house and neighborhood and to and from school. Or I could strap her to my back and jog. Or we could duct tape her car seat to a skate board and harness her to Norm, the neighbor’s Husky.

I am not worried (although now we’ll have to appeal and they’ll have 30 days to respond which puts us within nail-biting distance of school starting). Our insurer seems to have a First-Time-We-Deny-Everything Policy. And if for some reason on appeal they rule that a little girl with quadriplegia has other ‘transit options,’ MA is supposed to pay for it. (Except a new vendor won the State contract for MA equipment approvals –you guessed it, starting the day the State shut down. Guess who is behind?)

So I’m not worried, only annoyed. I don’t feel persecuted because this is par for course for the world of disability benefits.  I just thought we might land on “Pass Go!” this time because we lost two months getting the vendor’s specs right, and another month waiting for the wrong doctor’s signature.

I should probably double-check what finally got submitted to insurance. By the time this  landed in their in-box, maybe it was a request for roller skates. Purple plastic, please.

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One Comment leave one →
  1. Amanda permalink
    July 26, 2011 3:43 pm

    Other transit options? Totally absurd. So sorry you have to fight for this!

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