Friday, January 11, 2013

There and Back Again: The Clouds Burst

We had an entire day between our appointment with Dr. Shoffner and the muscle biopsy...we did absolutely nothing! I think I even took a nap! We played with my cousin's boxer pups (Rae was repulsed by their incessant licking), watched some TV, and gathered our overnight bags for our stay at my brother's house that evening.


The looming fog was finally beginning to lift and I was starting to feel a bit better. Until, I received a phone call from the surgical center with some unexpected news (honestly, I really should have expected this). The conversation sounded a little like this...

Surgical Center (SC): We wanted to confirm Rae's procedure time is scheduled for 9am and we would like her here by 7:30.

Me: Okay, we will be there. Thank you.

SC: We checked with your insurance and you will need to pay $250 when you check in.

Me: Excuse me? I've already paid a co-pay before we left (a complete misunderstanding apparently that was for the surgeon). Also, why are you waiting till the day before to tell us this information (yes, I know there are co-pays, but up until this point they were all paid in advance...or so I thought). We aren't prepared for this additional expense and can't pay it (I was being very honest) because we already budgeted for this trip and that wasn't in the equation.

SC: Well, it's $200 for the center and $50 for the anesthesiologist.

Me: I'm sorry, we weren't expecting this and we don't have it.

SC: The anesthesiologist is going to want his money (she seriously said this).

Me: The anesthesiologist can blow his nose with my $50 co-pay (yes, I seriously said this) when compared to the check our insurance will be sending him. So, I don't really CARE what he wants. We don't have it! (at this point I am more than perturbed and being completely defiant)

SC: Do you think you can pay a portion?

Me: Maybe

SC: Let me speak with someone in financial...


SC: Would you be able to pay $100? $50 to us and $50 to the anesthesiologist (guess he's gonna get his after all).

Me: I think we can swing that. Thank you. Goodbye.

That is the Cliffsnote version of the conversation, but you get the gist. My Aunt and Husband were gobsmacked and when I hung up they laughed. A year ago, I would not have been so brazen in my refusal to pay our co-pays.

When this Hypotonic journey began, we made every effort to pay every medical co-pay...EVERY single the time they were due. $50 here $50 there wasn't too bad, but once it turned into $300 here $300 broke us. I once asked if I could be billed for Rae's EEG and the lady at the counter gave me the stink eye and smugly told me "No!" I later found out that was a lie. Neither of us fully understood the road we just started traveling down and naively thought, "This won't last'll stop soon and everything will be fine." NOPE! Not the case at all.

Now, I have no shame. I honestly tell the doctors offices that I am not able to pay them. I make arrangements when I can or make partial payments if we are able, but we have to pay our mortgage, our electric bill, our insurance, and buy food. Yes, we afford ourselves three luxuries...internet, satellite (we're under contract), and a weekly Taco Bell run (that started when I was pregnant), but we need to have a little something for ourselves. I cut expenses where I can, work the weekly sales, clip coupons, and even purged our home of un-used goods (read as: I sold stuff). Now I operate on a completely different mind set... Make, Reuse, or Make Do!

I no longer cast my eyes down and sheepishly ask if we can delay a payment or make arrangements. In fact, when I check in for an appointment it is usually the second thing I ask (depending on the co-pay amount). We are not beggers. We do not live high-on-the-hog (I got excited being gifted socks at Christmas). We are not trying to skip out on our bills; we just have to juggle them around and pay the priorities first. So far, no one has denied Rae medical care because of it, so until they do, I'm going to keep telling them I can't. It will turn around at some point...maybe...we'll cross that bridge when we get there.

*Yes, we have looked into medicaid, med-waiver, Children's Medical Services (CMS), SSI Disability, etc...guess what...they are income based and we don't qualify. That's the whip cream on the sundae. The cherry is that we still have no idea the total cost of our trip to Atlanta because they haven't finished the testing and therefore haven't billed our insurance yet. Eventually, that bill will land in our mailbox...

**Originally "There and Back Again" was only going to be three parts, but this one incident deserved to be on its own.


  1. This makes me furious for you all! The State I live in has a waiver in the Medicaid/StateCare for kids with disabilities so that even if the family does not qualify, the child still does. Trust me when I tell you, I did not learn of this from them, it was from an Early Intervention Specialist and has been what has saved us countless times. Tess has been covered by both our Anthem and the State Care due to that little, well hidden, waiver. We have zero copays and zero prescription charges billed to us now. Are you sure your State doesn't have something similar? Just wanted to put that out there. Good luck!

    1. I just reviewed the information for the medicaid waiver and for medicaid and in order to qualify for medicaid waiver you must qualify for medicaid. For medicaid you must financially qualify based on family income. I'm sure there are ways to fight this somehow. We completed the application for SSI and were denied due to income. Then some services want an official diagnosis, which we don't have at this time. Then I learn that each state varies in how they determine eligibility and that just makes me even more irritated with this system. It is ridiculous!

  2. I've done some "googling" and found that this waiver is NOT just in my appears to be a federally funded program. It is called the Katie Beckett waiver. I apologize if you have already looked into this but I find it hard to believe that your daughter wouldn't qualify for it. Here is the link for more info just in case you are not familiar.

    1. I don't think I have heard of that wavier. Thank you! I'll check into it. If I have I have already let the information escape me and it got lost in my bookmarks folder. Even with all my attempts at organizing this information it seems things still slip through the cracks. Thank you again!

  3. It's such a disgrace that some states don't have any financial help for family's with kids with sn's. we live in nj and its the same here, everything goes on the parents income not the child's so unless u are on the poverty line u don't qualify for anything. It's so hard to keep on top of everything.

    1. There are so many families that are stuck in this type of situation. As one friend put it, "...we are stuck between not enough and too much." So we have to get creative.