Thursday, July 20, 2017

Turkey Talk

I don’t want it to seem like we’ve been wandering completely alone in the wilderness because that wouldn’t be fair to the wonderful teachers and therapists that have been walking along side us for the last 2 years.  They have all recognized the Thing that is there, but none of us have felt particularly equipped to deal with it.  It doesn’t help that SPD is relatively unknown and poorly understood.  Most friends and family have no idea what I’m talking about when I say it’s something we are dealing with (though many have since become quite educated, a real testament to their love for Becca); every doctor I’ve talked to – and you bet there have been a bunch of them – says something along the lines of “yeah, there’s something to it, but….”  The American Academy of Pediatrics doesn’t recognize it as a distinct disorder and the ICD-10, the international log of diagnoses, does not include it.  Consequently, insurers do not cover it.  And treatment of any kind, as you certainly know, is expensive.  Treatment that insurance won’t cover is painfully expensive – so much so that you find yourself wondering if it is a luxury you can afford.

So you start to read.  A lot.  You begin to recognize those behaviors you see every day in the descriptions provided by experts in the field.  You start to understand that the Thing is real and that there are tools to tame it – but they are hard to find and it’s difficult to know if you’re using the right one.  Eventually, you realize that this is not a DIY sort of project.  You absolutely need an expert.
It was while reading Sensational Kids that I first learned about the STAR Institute in Denver.  The author of the book, Dr. Lucy Jane Miller, is also the founder of STAR and a leading researcher in the field.  Her descriptions of their treatment philosophy and family-centered approach to intervention felt like a lighthouse cutting through SPD’s unrelenting vapor.  The more I read the more convinced I became that this is what Becca needed – or really, what Rob and I needed – to finally equip us to navigate through the fog.
But it was in Denver.  And with two jobs, three kids, and deep roots in Indiana, Denver may as well have been Timbuktu as far as I was concerned.  Because of the sheer distance and practicalities of relocating all of our lives, not to mention the overwhelming expense, I dismissed the dream to pursue this kind of treatment.  It just wasn’t realistic for us.
And then one day after Becca’s visit with her OT, Jamie, I mentioned that I was reading the book she had recommended to me.  And I had decided (ha ha, wink wink) that we needed to take Becca to STAR. 
And Jamie looked me dead in the eye and said “I think you should.”
So that was that.  Rob really didn’t take much convincing; there is literally nothing the man won’t do for his family, most especially his children.  I mentioned to my manager that I had found out about this program, and would it even be possible for me to take leave for a month?  (It would.)  I read more, stalked the STAR website, floated the idea past family and friends and finally screwed up the courage to fill out the intake form.
We were in.
* * * * * *
To say “we were in” is a gross simplification of a long and often times frustrating process of getting from There to Here.  To retell every obstacle would be tedious and pointless and, worse, might discourage someone else out there from pursuing a seemingly overwhelming goal - but trust me when I say that life threw us plenty of curveballs along the way and I lost hope more than once that we would get here.
But we did, and while the therapists and researchers are a dedicated crew, passionate about helping children and adults with a misunderstood disorder while at the same time advancing research to help the greater medical community accept and identify it….  They still have to be paid. And daily treatment sessions, uncovered by insurance, becomes very expensive very quickly.
When I first started writing this post the debate about our government's plans for healthcare was a particularly hot topic; I suppose it still is.  And while I certainly have opinions about that, it wouldn't be honest to hold Becca up as an example of one of the tens of thousands of children with complex medical conditions who rely on Medicaid to support their medical expenses.  She's not - although by now you've realized that Becca's ongoing treatment costs are significant.  We easily meet our annual family deductible (and it's higher than ever) within the first couple of months of the year.  So before we've even stopped shoveling the snow our family has paid out thousands of dollars in treatment costs, with thousands of dollars still to come as the year wears on.  And we will do it for as long as it takes because this is what she needs.
Now add to this the cost of an out-of-network program, one that insurance wouldn't pay for anyway because the nature of the treatment is to address her "developmental delays," something our insurance plan very explicitly excludes.  And this program also integrates parent education and counseling - something no insurance provider would ever cover, never mind that it is an essential piece to any treatment model. 
So the costs, at least for our very middle class family of five, are overwhelming.
I don't share this because I want anyone to feel sorry for us.  The fact is that my family has insurance - though admittedly, for our circumstances, it's not ideal - and we have the margin to make sacrifices to get our daughter what she needs.  She is also lucky enough to have a parent who works "in the biz," isn't afraid to ask questions and is in a position to ask for a few favors when necessary.  (I have picked the brains of a LOT of professionals, let's put it that way.)  The vast majority of families are not in this same situation.  It breaks my heart that they cannot make the same choices that we have made.
STAR is expensive: several thousands of dollars for 20 days of evaluations and treatment; add to that half as much again to cover travel, lodging, and food and this month-long investment hovers somewhere around $10,000, give or take.  And we, uh, don't just have $10,000 stashed in our piggy banks.  In fact the cost alone was one of those obstacles that I thought would keep us from ever getting here.  But this has proven to be another blessing of sorts, if we choose to look at it that way (and we do), because it forced us to become creative and diligent in our approach toward paying for it all. 
Countless hours of Googling, stubborn determination, a whole bunch of persuasive writing and most certainly a healthy dose of good luck resulted in us securing grant funds that covered over 75% of STAR's program costs.  Two different foundations have provided the bulk of the funding for Becca's evaluation and treatment at STAR, and when I stop to think about that it is overwhelming: perfect strangers reviewed our requests and decided that she was worth the investment. And let me tell you, they are right.

(photo submitted with applications because....  come on)
Grant writing wasn't new to me, and I've always enjoyed it. I mean I get to use all the words, tell a story, and hopefully win over new believers to help support a great cause.  Going through this process has only reinforced my belief that it's a path I need to continue to pursue.  There are so many places out there that want to help kids like Becca and I feel more committed than ever to helping great organizations find the funders that want to support them.  So thanks again, Becca - you've helped your mama find her way in this world. 
The least I can do is help you find yours. 
(yes, she can.)
 * * * * * *
If you have, or know of a child with overwhelming healthcare expenses these are two foundations that may be able to provide supports.  We cannot begin to thank them enough for their investment in our sweet Bex.  And if you have questions about how or where to begin with your own search for funding please let me know.  I'd love to help.

1 comment:

PapaGunn said...