You think I'd crumble? You think I'd lay down and die? Oh no, not I . . .*

A full week of no updates . . . and what do I have to show for it?

This:

Those are the supporting documents that were included in my insurance appeal.  (No, I didn't include 6 packets of blank paper---those ones are just flipped face down due to identifying information).  While I've often alluded to the misery of fighting with insurance, I don't think that I've ever taken the time to really lay the battle out.  Now that our appeal has been finished and sent, I have the presence of mind for some explanation.

I have regular fights debates clarifying conversations with the kind customer service folks over at our insurance company.   Just this week, we had 2 chats:

Monday: I receive 3 denials of claims for pediatrician visits (I tend to save up receipts and then send a bunch at once).  Upon calling and talking to the rep, I explain that I don't think it's possible that we haven't met our deductible for Maya.  He says "well, remember, the amount is not based on how much the doctor bills, it's based on how much we pay out."  I fumble with receipts, sigh, and ask why her vaccinations weren't covered, since the form says "Vaccinations are only included until the patient's 19th birthday."  At this point we realize that all of the claims were processed under my name instead of Maya's, and we have the exact same exchange that I have at some point during Every Single Call to the company:

Him:  Well, ma'am, the doctors office must have made an error in filling out the forms.
Me: Actually, I fill out the forms.  And at this point, I could do them in my sleep.  Are you able to pull up an electronic copy on your computer and verify that there's not a mistake on the forms?
Him: Hold on one second (click clack clickety clack).  Hmmmm.  (click clack clickety clack) Well, ma'am it seems like everything is in order here.  I'm going to just go ahead and reprocess them for you.
Me:  Ok, great.  (eyes rolling until they nearly touch my brain)  Thanks so much for your help.

Tuesday:  While cleaning off my desk (sorting through papers for the appeal) I find an older denial for 2 pediatrician visits.  This time the reason for the denial is "The treatment was given in an inappropriate or invalid place of service"  (yes, that's a direct quote).  And the call went like this:

Me: I'm calling because I think these claims may have been processed incorrectly.
Insurance: Well, ma'am, I'm seeing that they were denied because the service was provided in an "incorrect or inappropriate location".
Me: Well, they were pediatrician appointments. In the pediatrician's office. I'm not sure where else we could have met with him.
(then we looped directly into the conversation quoted above)

Anyway, this appeal was not about these smaller denials---it's about 79 (so far) denials for Maya's feeding therapy.  Maya gets private feeding therapy twice a week, which is invaluable to the development of her muscles and coordination, and is a large part of the reason that she's not still eating jars of baby food (which she was still on until after her 2nd birthday).   To make a 3-month-long-story short, after manymanymany phone calls and re-submissions, we found out that the therapy was being denied because it was being provided by a speech-language pathologist (SLP) . . . to the company, appropriate providers of feeding therapy included pediatricians, GI surgeons, and family practicioners. 

(If I hadn't been in frustrated tears at this point of this particular phone call, I would have burst out laughing.)  For those of you not in-the-know, this is the equivalent of saying "We cover root canals, except if they're done by an oral surgeon.  If you have a root canal done by a manicurist, janitor, or high school principal, we'll totally hook you up."

So my appeal was two fold---providing ample evidence that this treatment is medically necessary and highly beneficial for Maya, and attempting to convince them that an SLP is the most highly qualified provider of this service***.  It was a 45 page appeal, including:  a letter of medical necessity from our pediatrician, a letter of medical necessity from our developmental pediatrician, a letter of medical necessity from our feeding therapist, Maya's first feeding evaluation (at 9 months), Maya's most recent feeding evaluation (at 31 months), a phone call log of all of the discussions that I've had regarding these claims, an Excel spreadsheet of the claims and their pertinent information, 2 documents from 2 different insurance companies that show that they only pay feeding therapy claims to SLPs, 2 research articles that explain why SLPs are the most qualified providers for feeding therapy and explain that their knowledge base is unique and nontransferrable to other types of providers.

Whew.

It's taken me a few months to gather the appropriate paperwork (we couldn't get a letter from the developmental ped until we had our check-up, which takes a few weeks to schedule, etc).  I didn't realize how much having this thing hanging over me was really affecting me (subconsciously) until it was gone. 

It all goes right back to that learned helplessness stuff that I've talked about before.  It's such a downer to have something that you need to do, when you're powerless to get it done.  My to-do list felt insurmountable when I had this deeply subconscious inner dialogue of "Why bother calling that doctor to schedule an appointment?  You haven't even made a dent with the insurance yet."  or "How can you take the time to respond to emails when you should start typing a call log for the appeal?"

So either I would do smaller things on my list and feel guilty about not making appeal progress, or work on the appeal and watch my apartment get messy, take-out get ordered, and a million little things amass on my daily list and fester.

It's so hard to feel powerless.

And I'm so glad that the appeal is done :)

So now the ball is in their court. 

Be sure to stay tuned for a ridiculous update about how it was denied because they are only able to process appeals that are typed in Times New Roman, or postmarked on a Saturday, or whatever.

 ***As an aside, I'm not fully convinced that it actually is their policy that SLPs are not payable---I feel like they may have just been using that as a deterrent in the system to get me to throw up my hands and give up.  They refused to provide me with the policy in writing, telling me that then I could "just commit insurance fraud."  (How?  I'm not sure.)

I realize this makes me sound like a conspiracy theorist, but these people have pushed me right to the edge.  During one call, at 12:27pm the person I had been speaking with said "Ma'am, I'm sorry, I suddenly can't hear you at all---you're breaking up---let me just put you on hold for a minute and then reconnect to see if that helps."  She hung up on me.  When I called back at 12:29 I got a recording: "Thank you for calling.  It is currently our lunch hour.  Please call back after 1:30pm EST.  Thank you." 

Seriously?  It's enough to make anyone go postal.

And go round and round and round in the (ridiculous insurance) circle game*

If you "like" us on Facebook, you have been privvy to a few random I'm-going-to-crawl-into-a-hole-and-die-because-I-can't-handle-dealing-with-the-insurance-company rants.

It's got me thinking (more) about all of the bureaucratic nonsense that parents of children of special needs end up dealing with.  Yeah, I know that many people without kids with SN have insurance wars, and many people deal with other bureaucracies . . .but it can become (literally) a full time job for parents of children with special needs.  And, referring back to the learned helplessness model that I'm such a fan of, it's hard to keep trying to fight the shocks.  Last night when Dave got home I took a long, hot shower and had cookies and wine for dinner, because I was ready to just give up.  (Thanks to the KIPP cookie exchangers for providing my dinner ;)  )

If you are lucky enough to not understand what it means when someone says that they're "fighting with the insurance company", or if you don't understand why it would be stressful to just make a few phone calls, I hope that the saga below will help to shed some light:

Background:
Maya gets a lot of therapy, most of which is through the state's Early Intervention program.  However, we also supplement with private speech & feeding therapy, which we pay for out of pocket.  Insurance reimburses us for about 1/3 of what we shell out (don't get me started on the additional expenses of having a child with special needs).  Once we have a statement (EOB) from the insurance explaining what they will or won't pay, we can take money out of our FSA (a special account that we pay into at the start of each year, tax free, and can use only for medical expenses).  Without those EOBs, our money is stuck in the account.  If we don't submit EOBs to use it, we lose it.

The Saga:
I submitted a bunch (60ish) claims back at the end of Sept. Some were processed, some just seemed to disappear (meaning that I never heard anything about them, whether they were approved or denied). I've now spoken to different representatives about these claims a bunch of times---each time "something" is wrong with them, preventing them from being processed at all.

Call #1 : The first time I called, they "didn't have the provider's name and address"---but when I spoke to a representative and explained that all of that information was on the receipts that I sent in she was then (miraculously) able to see it. She then submitted them for re-processing.

My thoughts: Hooray!  That was easy to fix.  Now I'll just wait a few weeks for checks to come in the mail.
  
Call #2: The second time that I called they said that the person who resubmitted them the first time did it incorrectly, so we had to re-do everything from the first call.

My thoughts: Argh!  It's annoying that I waited all this time thinkng that it was being processed!  Oh well, at least now it seems like everything is fixed, and I just need to wait a few weeks for checks to arrive.

Call #3: The third time they said that the problem wasn't the missing address information, it was that they felt like the therapist wasn't qualified to provide feeding therapy (because her letterhead says "speech pathologist"). I pointed them towards 2 other claims that I had submitted and they had paid. She agreed that it didn't make sense, and put them all through for re-submission, again. She said that she would mail me EOBs that said the claims were denied, so that I could submit them to the FSA.  This phone call took 47 minutes, as we had to individually identify each date of service and claim (it's a good thing I've learned to keep good records).

My thoughts: What the hell-o goes on at these places?  How is it even possble that there are so many issues with these claims?  I'm starting to suspect that things are done incorrectly intentionally so that eventually I will give up.  Or be committed to a mental institution.  It's a good thing this girl was so helpful, she'll at least get those EOBs out to us tomorrow so that we don't lose our FSA money.  If I don't get them in the mail in the next few days I'm going to call and check.  


Call #4: The fourth time I called, the person said that we couldn't get EOBs in the mail because our account was now paperless (I'm 100% sure that this is another stalling tactic.  We never changed our account to paperless.  I have statements that were mailed to me in Oct, but in Nov they started posting notices to our "online insurance account"--which I had never even heard of prior to this call.  WHAT THE HELL? ).   She also said that they would never agree to mail 36 EOBs without something in writing. When I offered to fax in something she said that wouldn't work.  Then I had a crying, cursing mental breakdown on the phone and got the supervisor :) I faxed over 50 pages (that I had previously mailed in) to the supervisor. She said that she would try to figure out some way to help.

My thoughts: IswearonallthatiisholythatifiknewwherethisofficewasiwouldbetherecampingoutwithmywhinytoddlerandchangingherdiapersonsomeonesdeskandsingingwheelsonthebusandrowrowrowyourboatallthelivelongdayIfyoupeoplemakemelosemyFSAmoneyIwillcallyou3tmesadayeverydayfortherestofeternity.


Call #5/6/7: The 5th-6th-7th times I called, the supervisor dodged my calls. 
My thoughts: Shocker.  I think they may be starting to realize that I've crossed the line from "Overwhelmed victim of this company" to "Angry and annoying client who won't. ever. stop."

Call #8: The 8th time that I called, the supervisor saw that all of the claims are in the limbo of resubmission (for the umpteenth time). She emailed the manager to see if there was a way to print EOBs for the ones that have been denied and send them to me.  I still don't think that this will help with th 36 claims that are in limbo.

My thoughts:  I'm coming to the realization that the "supervisor" does not seem to be much more capable of getting things done then the call answering folks.  But at least now I have a name, and I get to the same person each time.

Call #9 (today): Supervisor dodged my call

Call #10 (today): Supervisor said that her manager emailed her back, but it was a secure, encrypted emal so she couldn't open it.  So she emailed the manager back and asked her to re-email it but not in a secure encrypted way so that she would be able to open it.

My thoughts: Ok, now you're just making shite up.  There's not even a remote possibility that any of that is legit.

So, there you have it. In my humble opinion, the insurance company is deliberately giving me the run around, trying to wait me out. 

It's maddening. 

Literally.

And every time that I get out my notes and stack of papers to call, I think of one of my old favorite quotes (which you may have seen on the FB page):

"Courage does not always roar.  Sometimes it is the quiet voice at the end of the day saying 'I will try again tomorrow'.- Mary Anne Radmacher

And I guess that's what I'll do.

OH, AND THE 2010 HOLIDAY CARD GETS POSTED HERE TOMORROW!!! HOORAY!!!!

Under Pressure*

Why are we having evaluations this week?  What the heck is CPSE?  Here's my understanding of the situation, in a nutshell:

In the state of NY, therapies for children are provided through EI (Early Intervention) from birth until their third birthday. We’re starting to prepare for Maya’s transition out of EI and into CPSE(Committee on Preschool Special Education) which is run by the DOE (Department of Education, aka Board of Ed.). In general, the DOE is known for being extremely stingy with services, and very difficult to work with (placing children in “special needs” schools that are across the city from where they live, drastically cutting therapies, not providing one-on-one aides without a huge fight, etc.). 

By the way, this all ties in really well to the learned helplessness model again---it's us parents vs. the DOE, very David vs. Goliath-esque-----and they know all of the rules and hold all of the power, while we're scrounging around trying to gather as much infomation as possible to fight back with.


So this week we have a group of evaluators coming to, well, evaluate Maya. This morning we had the PT evaluation---later this week we’ll have OT, Speech/Feeding, and Psychological evaluations. Each evaluator will ask me some questions, watch Maya, interact with her, and administer some type of standardized assessment. The scores of each assessment will say how delayed she is in each area of development, and those scores will be used at the big meeting with the DOE in which we try to find an appropriate preschool setting (and whether she’ll be at a therapeutic—aka “special needs”—preschool, or whether she would be in a mainstream preschool and get therapies at home).

Also, I’m calling preschools, setting up tours, trying to find schools in the area. Trying to figure out what would be best for Maya, when really I have no idea. How can anyone know this stuff? I’ve gotten the name of a place to call this week that is supposed to help parents navigate all of this a little bit easier . . . I’ll be interested to see if I can find some guidance.

This stuff is all so stressful. I feel like a few months from now, my hair will fall out again.

I'm not joking.

I have felt my base stress/anxiety level increase, and I can’t really figure out how to best combat that. If you saw my last post, you saw what our schedule looks like . . . granted, this week is busier than usual, but even on a “normal” week, all of those therapies are there. We’re busy. There’s not a lot of time for relaxation or unwinding.  There's a lot of worrying.  A lot of "what if there's something I'm missing" and "what if there's some school that is only doing tours right now but I don't find out about it for a few months".

(sigh)

December is my favorite month, and I don't want it to get lost in this.  I've been addressing our holiday cards :)  I'm going to start decorating this week, and wrap presents.  We made reservations to go out to dinner for my birthday.  I'm going to make shopping lists.  I'm trying to figure out how to Maya & Parker proof our future Christmas tree, since they are getting more and more mischievous.  Like this:

That's Parker in the bottom corner, saying good morning to Maya.  And that's Maya, who somehow was trying to undress herself in the crib, apparently.

I'm going to try not to let this giant dark evaluation/CPSE/DOE/preschool placement cloud overwhelm my favortie month.  But I hate the fact that it feels like it will take effort.

Learned Helplessness & Early Intervention

Warning: The first three paragraphs here are kind of science nerd-y, but I tried to keep it short, sweet, & simple, and I think what I'm getting at here is really interesting from a psychology standpoint.

The Theory:
As you may or may not know, I was a zoology major in college.  I took a good number of ethology (animal behavior), behavioral neuroscience, & neuropsych classes . . . classes that looked at animal behavior and animal psychology (which, as it turns out, is very very closely related to human behavior and human psychology). 

There is a very interesting model of animal (and human) behavior called "Learned Helplessness".  Basically, experimenters exposed dogs to a series of shocks.  "Group A" dogs could turn off the shocks by stepping on a bar, "Group B" dogs couldn't control the shocks.  Later on, the dogs were put in a new situation where they could all control the shocks by jumping over a little bar and getting away from them.  "Group A" dogs jumped away, but the "Group B" dogs just laid down and whimpered, taking the shocks. 

Since the dogs in Group B had learned that their behavior didn't help their situation, they just gave up.  They  didn't assert themselves.  They were depressed.  (Human tests have found similar results.)

I've come to the realization this week that many bureaucratic systems (Early Intervention, filing claims with insurance companies, etc.) can set up the same sort of learned helplessness situation----by making people feel helpless, like they have no control over the outcome of their circumstances and no power to accomplish anything, many eventually become depressed and just give up.

The Personal Connection:
This past week, I was irate at dealing with the bureaucracy of the Early Intervention system.  I was take-my-plates-out-on-the-terrace-and-shatter-them-one-by-one-while-primal-screaming angry.  And, honestly, I'm still pretty ticked.  Here's the backstory:

I've been trying to get Maya leg splints for 10 weeks. TEN weeks. The girl can't stand. She can't walk. She needs splints.  Initially, I was worried to call too often to follow up on the paperwork because I didn't want to annoy anyone who would have the power to "lose" my file, causing a big delay. 

Causing a big delay?---Ha!  Here we are nearly 3 months later, and I'm not afraid of getting on anyone's nerves anymore.  Now I'm trying to get on people's nerves like it's my freaking job.  I would be in the office, singing "99 Bottles of Beer on the Wall" if I thought it would help.

If you've been lucky enough to never deal with infuriating bureaucracy, here's my list of phone calls from Monday:

10:15: Called Service Coordinator work line, left message

2:00: Called SC's cell phone (which she prefers to be reached on), left message

2:30: Called SC's supervisor, left message

4:15: Called SC's work line again, left another message

4:48: Called SC's supervisor again, he answers and says "Oh, SC is here, I think she has information for you" and transfers me.

She's like "Oh, I've been meaning to call you back". And then the big update is that she finally spoke to the person who has to sign off on our stuff and she said "Hopefully we'll get it by Friday, if not I'll call on Thursday to check on things."   Thursday.  Thursday?  If she calls Thursday, the signer person won't even get the message until Friday afternoon.  And no way they'll call her back on Friday.  So another week will go by with nothing.
AARRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGHHHH

I got the number to start calling myself, but in a ridiculous twist that unfolded this afternoon, it turns out that I've been leaving messages for the wrong person . . . I was given the number for the person who signs off on our speech papers, not our assistive technology papers.  So tomorrow I'll start calling the new number.

How can this be so hard.

My effingg kid can't walk. I need these splints. Sign the papers.

I totally understand why people lose their minds and shoot up offices.
(I'm not really threatening violence, please don't report me to any authorities :) )


In Conclusion
I'm a totally capable, savvy, intelligent woman---but dealing with this system has made me feel so useless and depressed that there are many days where I have thought "why bother calling. It won't matter anyway."

And if you're thinking "Oh, if it was me, I would just storm in there and demand this and blah blah blah" well, let me say, no you wouldn't.  You would quickly see that it won't get you anywhere, and actually, it would close doors in your face.

Plus---think for a moment about these calls I'm making.  I'm trying to get splints so that Maya can stand and walk.  Everyone who is in Early Intervention has kids with specials needs who are younger than 3.  So these people trying to make the calls?  We're pretty much near the end of our emotional rope a lot of the time. 

We already feel helpless, because we couldn't control whatever circumstances have led to our child's disabilities.

We are already angry and frustrated, feeling like we try to help but things don't work.

We oscillate between "I will fight with everything I have until you give my kid what she deserves" to "I'm just so tired of fighting".

-or-

We oscillate between "I will jump and push levers and fight for my ability to not get shocked" to "Sometimes it's just easier to lay down and whimper and wait for it to pass".


Oddly, making this connection (my emotional roller coaster with this situation, and it's perfect fit with the learned helplessness model) has really let me detach a little bit from the process, thereby giving me the calmness to just keep calling, patiently and matter of factly.  For now anyway.  I'm sure I'll get frustrated again :)

So that's where I've been.  And now , here are some totally random pictures from the weekend, just for fun:

Waiting for Daddy in the lobby of the building (he took this pic)

Shopping is so exhausting.   Sometimes I just need a break.

In light of these recent stressors, I've needed to up my caffeine intake.