Thursday, April 29, 2010

Heavy Decisions - The Post That's Been Brewing for Weeks

(Clearly, the heavy decisions going on in our house lately have worn our sweet Sammie B out.)

As I mentioned briefly in my last post, we recently received a notice that Sammie B's regional center funding would be discontinued because we have private insurance. Now, I could go on and on about how I think the system is "broke" or why I think it is that way, but suffice it to say it is an unfortunate situation and one that makes me like my state a little bit less. I get it that the regional centers are supposed to be funding sources of last resort, and that families should use their private insurance first, but unfortunately, the regional centers have been providing funding to everyone and anyone who qualified for so long that most pediatric therapy providers have been able to survive (and thrive) on regional center funding alone, which has allowed them to avoid the cost and hassle of dealing with insurance billing. The result? NO pediatric OTs/PTs take insurance! We haven't ever really loved our OT (we chose her because she came highly recommended with great qualifications, but her personality was less than impressive and her level of enthusiasm sucked), so I wasn't that bummed about a change there but we do like our PT and feel like she's so vested in Sam's treatment. And, all change just scares me and launches me into the usual panic and worry.

So, we got a list of pediatric PTs and OTs from our insurance company and I called every single one of them within a 20 mile radius from our house and not a single one of them (1) sees kids Sam's age, (2) specializes in developmental delays (as opposed to just seeing people post-injury, like orthopedic clients) AND (3) has the appropriate equipment for working with little bitties. (Even those that were listed as "pediatric" therapists told me they don't generally see kids under 5). A few told me they had treated "a toddler" before and I knew I didn't want to throw Sam into the hands of someone who has treated ONE toddler! Based on the information I collected, I thought we could likely lodge an appeal with insurance and get them to pay for an out-of-network provider, but no go there . . . insurance said we had to check within a thirty mile radius, which in LA could be a two-hour drive, and sure enough . . . when I expanded the search to 30 miles, I found providers. Nevermind that we'd spend hours upon hours in a car, with the kiddo cramped in her car seat to get to therapy, right?! To see therapists who would discourage me from having her in 'devices' (like car seats) too much! Frustrating!

Regardless, our insurance only covers 24 sesions of PT/OT (combined) per calendar year, and with three sessions per week, we'll blow through those quickly (though I think they could allow more with doctors' letters, etc. but that just means MORE work, more advocating on our parts, as if we aren't busy/stressed enough, right?!) and once we've exhausted private insurance, the regional center will pick up the cost again.

We are appealing the regional center's decision to terminate her services, based on the above (and arguing that without the ability to see someone who specializes in developmental delay, Sam's quality of services is affected). I drafted a pretty strong appeal (patting self on back) and now we have to wait for an informal hearing. Even as a lawyer who argues all day long, I hate this process. I hate not knowing the result, and I hate that there's any threat to the quality of Sammie B's services. So, tons of stuff to think about and things swimming through our heads. I've been just generally overwhelmed, and we've tossed tons of possibilities around (just biting the bullet and trying other providers, which would require the long drive; asking the regional center to keep paying for PT and we'd do OT through insurance, etc.). At the end of the day, we'll just do whatever the regional center makes us do, but of course, we'll search to the ends of the earth or drive wherever we need to to make sure Sam gets quality therapy, but it stinks to have this little wrench thrown into this therapy regime that slowly, reluctantly become our "new normal."

In the meantime, we will continue seeing our usual PT (who doesn't take insurance), and we've switched to an OT (21 miles away) that takes regional center funding (for now - we have it for one more month definitely) and is in the process of becoming an in-network provider for our insurance company. As I also mentioned in my last post, this OT is our nanny's childhood friend, and already knows (and loves) our Sammie B. She's a new OT, fresh out of school, which I suppose on paper might make her less qualified than the old one, but her sunny disposition, excitement about what she's doing, intellectual curiousity about Sam's issues, and her general love for Sam make her MORE than qualified than the old witch ;o) who, despite 6 months of trying, Sam just never warmed up to (nor could any of us blame Sam!). And, we are just trying to remember that even if we do have to switch PTs ultimately too, things happen for a reason, and everything will work out, however they are meant to. I keep reminding myself to roll with it and just let life unfold, and stop trying to be the puppet master controlling it all . . . because really, its so out of my control.

But that doesn't mean I haven't lost sleep worrying about it, weighing our options, thinking what-if, what-if, what-if. And when I get lost in these thoughts, I've been finding myself thinking "whoah. . . am I really the one responsible for these heavy parenting desicions? For choosing something so important for such an important little creature? What if we pick the wrong option?" And I've been thinking of times in my life when MY parents were probably laying awake, wondering if they'd done the right thing, hoping someone would tell them which door to open. Like in high school, after we'd moved to a new state and I hated my new school and they had to decide whether they should switch me to private school and how they could possibly make that happen financially. Obviously at the time, I knew what I wanted (the private school), but never did I think about what a heavy decision my parents had or how much thought and worry probably went into the choice for them . . . and that seems like it was just yesterday. But it wasn't . . . now I'm the one making the heavy parenting decisions, just hoping and praying I do as good of a job as they did. That we open the right doors.

And with that, I leave you with a few fantabulous pictures of Miss Sammie B, playing, and standing (and smiling)! We are still getting some "spagetti" legs with standing attempts, but much less often, and she's standing for much longer periods of time. Inchstones.

1 comment:

Sebrina said...

Wow!! Go Sammy!! Standing is Big!!
I know what you mean by your relationships you build with your therapist!! We drive several miles 3 times a week for ot, pt and speech and have vision therapy at home..We love our pt and would follow him anywhere!!
Good Luck hope everything works out and Soon!!