As some of you may know, Mama C’s career involved designing health insurance plans for large, high tech employers. Thanks to a super hard working, family loving, thoughtful Daddy P, I was given the opportunity to step out of the work force and spend more time with the kids. In doing so, we thoughtfully considered what it would mean for Graham and his healthcare – we knew there would be changes, and possibly some challenges, but never thought it would be quite so heart wrenching…

You see, we received a call last week from G’s speech therapist that G is not eligible for speech therapy based on his diagnosis. What?!? To be fair, I did look into this before the change, and while we couldn’t speak to someone at the insurer until our start date, I never imagined there would be a flat out “no”. We knew his 300 visits a year (2x week for speech, physical, and occupational therapy) would be reduced to 60. That’s a decrease to one visit every other week which is already a hardship. We knew we would need to be creative, and his current services are billed as home health care…and there is a different limit for outpatient rehab…SO, if we (inconveniently) take him to a facility for services 6 months of the year, and do home health for 6 months (they see him at school or home), that gets us 120 visits! Still not enough, but much better!  (although in speaking with a case manager at the insurance company, she said this likely won’t be covered because he is either able to get out of the house or isn’t…can’t be both. dumb.)

So as we are meandering this, we get the dreaded call…the insurer only covers speech therapy for an “illness” (mostly cancer), and in their viewpoint, since G won’t talk, there is no point covering this type of therapy for him. WHICH IS RIDICULOUS! He is making drastic improvements in his speech and has made huge strides in just the past year.

And to top it off, his developmental pediatrician called me the very next day to say she has concerns with G’s feeding, and his speech therapist needs to do this and that…while I hold back tears until she is done, to tell her that we can’t do any of that because insurance won’t pay for it. (okay, maybe I didn’t hold the tears actually…poor lady…)

She is of course fairly livid about this, but we then turn to the vicious cycle of the US healthcare system. Talk to the insurer, find out how to appeal, talk to the therapy company, tell them what to write, the therapy company says it’s not their place to appeal, the doctor needs to do it, and around and around we go. So now we are in limbo waiting for the doctor to get back to us about all of this and how she may be able to convince the insurer why speech therapy in necessary…despite his “diagnosis”. Erg.

This has been a huge disappointment, and there isn’t anything we can to about it at this point, but sit and wait. In the meantime, G loses out on valuable services. I called the therapist to see if we can just pay it out of pocket…and guess what – for private pay they STILL charge the SAME as they charge the insurance companies – $125/visit. So, with the 240 uncovered visits (300 he needs minus the 60 they will cover), that is $30,000 a year.  I did that math 3 times because even I cannot believe it!!!!! THIRTY THOUSAND DOLLARS TO GET G WHAT HE NEEDS!!!! So, we decrease his visits to once a week, and we pay $12,000 out of pocket…just insane.

So, the last resort is looking for private therapists that don’t work with insurance (which I used to think was crazy) and they charge $90-ish…a little bit of savings we will take!

The bright side…it’s almost summer (!!) and G will get a break from his crazy therapy schedule! School is out next Tuesday (tear) and I am both excited and terrified of spending the next 6 weeks with the 2 crazy munchkins! Look out Austin!

Splash pad fun!
Splash pad fun!

G had a check up with Dr. F, his developmental pediatrician a few weeks ago, and overall it went well. It wasn’t the intense testing he went through last time, but she did feel he is working at about a 12 month level now, which reflects progress which is awesome. A key outcome was to encourage him to play with toys appropriately – for example, he LOVES cars, but flips them over to turn the wheels, instead of rolling them on a surface. He “reads” books, but just likes to flip the pages without paying attention to the orientation of the book.

Most notable however, was the education I received on autism. We have recently changed benefit plans, and basically nothing is covered (more on that in another post), unless you have an autism diagnosis.  When we left the NICU 2.5 years ago, we were told G would most likely be autistic, but didn’t really know what that meant. A provider at some point along the way said if he doesn’t talk, he is automatically designated as autistic. We of course didn’t (and probably still don’t!) have a good understanding of the spectrum and what it means anyway, but he shows obvious affection, babbles incessantly on occasion, and loves to be around people and play, which doesn’t seem stereotypical autism in alot of ways.

Where we are now is that Dr. F has said that she cannot diagnose him as autistic unless she can differentiate his behavior from just being “delayed.” So, basically, he might just be delayed in his behaviors, and we have to give him extra time to get there. She is actually working with his school right now to observe him there and have a better idea of his full social scale, rather than for an hour at her office.

With G’s full range of diagnoses as they stand today, I am not sure adding one more makes that much of a difference in the grand scheme of things. The things we were worried about, such as not connecting with his family or not showing affection, he does, so that has been a weight lifted off our shoulders. As parents, we of course don’t want to add autism to the list. However, thanks to the healthcare system in the US today, we are now hoping and pushing for it, as that will open up doors to therapy he is no longer able to access under our new health insurance, specifically, speech therapy. That is for a whole different post….but the fact that G’s future successes are now limited by an autism diagnosis is a huge failure of the system today. All kids (and adults for that matter) should be able to access the care that they need and have shown success with! Erg, now I am getting on my soapbox…must end this now, and am sure it will continue in another post for another day…. 😉

I will end this with a few pics of the most recent sibling love…big sis hugging on her brother, and he beating her up thereafter… I LOVE this stuff..typical sibling strife!  😉

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