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    Wife to Bryce and mother of three children, LJ, Noah, and Sofia. Living in a very "special" world of special needs. LJ has cerebral palsy, myoclonic seizures, developmental delays, and cortical visual impairment. This is our yellow brick road.
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Wheelchair and insurance blues

We had a wheelchair evaluation yesterday.  We actually had the DME Supplier (Durable Medical Equipment) come out in July to adjust LJ’s kid kart and do the evaluation then, but he informed us at the appointment our insurance required us to go into the seating clinic.  I thought this was a little ridiculous considering the professional we’d be seeing in the clinic know nothing about my son.  He could be having a great day where he’s having excellent head and trunk control when they see him.  Which means he probably wouldn’t get the support he needs during his bad days.  But whatever makes sense to them, right?

As I listed some of the options I researched, I could tell we weren’t going to get anywhere.  We discussed the different options in chairs.  Wheelchairs vs strollers vs pediatric chairs.  I guess we came to the conclusion that the chair we have is the best option for another year or so.  Considering my animosity towards the kid kart, you can imagine my frustrations.

We talked about future options.  The most frustrating part was how insurance kept coming up.  It really ticks me off the we have to think about what insurance MIGHT cover instead of what is best for LJ.  That’s secondary.  And with insurance, nothing is guaranteed.  Even if you have a pre-approval, they can still refuse to pay a claim. 

I found out the other week that when LJ’s insurance was switched to having straight Medicaid instead of having a provider through Medicaid, that coverage DID change.  First off, no one bothered to tell me they were switching his coverage.  I found this out after we had trouble getting one of his prescriptions filled.  But no one would talk to me since they failed to put me on his case when they made the switch.  I finally was able to talk to a medical liaison who told me that nothing would change in our coverage.

She was oh-so wrong.

Now we only get 20 visits for therapy per incident.  And less coverage for DME.  Oh, and we don’t get a case manager, which is insane to me, since according to what I heard, anyone who is switched to straight Medicaid probably needs one more than anyone else.  For those of you who aren’t sure what a case manager would do, basically she would know who we are.  She would know our story and she would be my go-to person if I had any issues.  Instead, I have to wait 30 minutes to get a customer service agent (who have been less the helpful) and then I get to spend time telling LJ’s life story.  Over and over.  And over. 

I know these issues are minute.  But when I think of other parents who struggles are greater than mine and I get worked up again.  There are so many struggles we work through on a daily basis.  So many battles we have to fight.  And we will stand up to the plate, over and over again.  But I can’t help but think it shouldn’t be like this.  Not everything should be a fight.

And yet, I expect it now.  I expect everything to come with a battle.  Every doctor’s and therapist appointment.  Every IEP meeting or school review.  Every time there’s a new prescription or a change in medical care.  Every time someone suggest a piece of equipment that could be seen as a convenience. 

I’ll continue the fight, as I know other parents will.  We do what we need to, for our children.  I know these posts can seem whiny and can come off like we’re trying to play up sympathy.  But it’s a reality we live in.  And you know what they say about a squeaky wheel.

Anyone got some WD-40?


One Response

  1. So sorry things are not going smoothly! And whiney, no way! Truthful, absolutely! Hope it all gets worked out (so that you’ll be able to fight the next battle).

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