This is Amos' story and I play the role of narrator, mother, fighter. I'm not sure I'm winning. I'm fighting though, I'm fighting for the most brilliant
cause that has ever been and I doubt any parent would disagree. A child, my child, Amos, my Amos. He may have no voice of his own but he has a
right to services that BCBS promises are available for their patients. The battle is fought over what services are deemed "necessary." I can't
help but think of the old adage my clever father instilled in my brother and me: Is it a need or a want? As much as this seemingly rhetorical question
annoyed me as a child, I have found myself echoing the same verbiage to my own four children.
It's tricky though, isn't it? Do you need a car? I may say yes, but do I really need it for my survival? No. Do you need water? Yes, absolutely yes.
Do you need a place to live? Maybe, but maybe not as you could stay with friends. Do you need to talk? No. No, you don't need to talk says BCBS.
Amos can gesture and vocalize to get what he needs, they say, at least for his most basic needs. He can. He can walk in the pantry and bring me
a box of Cheerios and steal my drink and thus, his needs are met. He can say "Mama" and "wa-wa." This is the path our beloved BCBS of NC has chosen
to offer and it is not a pleasurable walk in the woods, unless you long to be Hansel or Gretel. I, however, refuse to follow this ridiculous trail
of breadcrumbs.
I'm fighting the good fight. I'm right, I know I am. Does anyone "need" an MRI or genetic testing or speech therapy? According to BCBS, the answer
is no. It is no, over and over again, I am told no. I'm a mother though and mothers don't take no for an answer and this mother wants more than
Amos needs evidently and if that's wrong, then take away my license to parent. While he may not need the services we request for his very survival,
I say to BCBS, come spend a day with us and fall in love with Amos and then tell me that his gestures and his vocalizations are enough. I dare
you, BCBS. Tell my little boy that he should just talk with his hands and that a voice from a computer will never be his own because you say he
doesn't need it. Someday he will tell his own story and I wonder which character you will be in his tale.
Choose wisely, my friend, choose wisely.
Comments
We've paid out-of-pocket for years for private speech therapy for two of our kids, but we're incredibly fortunate that we're able to do so. It's outrageous that families/parents without similar means would not have access to the same, critical services because of a ridiculous determination by an insurance company that recovering the ability to speak is more worthy than developing it in the first place.
That said, one saving grace, at least for our family: We also qualified for speech services through the Infant-Toddler Program in our county (also in NC), which supports kids under the age of three, and then our kids qualified again through the public schools, so all of that speech therapy was "free" for us. In our experience, the speech therapists in those programs were much, much better than the private therapists that our children saw (that was not the case for occupational therapy, which we also qualified for, as those therapists tend to focus on school skills only, whereas private OTs will work on general coordination, vestibular issues, sensory integration,etc.). You can find more information here: http://www.beearly.nc.gov/index.php/providers/eligibility-referral - your provider may be able to refer your son, such that if he's determined to be eligible, your county CDSA would cover the cost of the sessions.
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