Wow, Cigna, just wow

Mail from Cigna for apraxiadad! Could it be good news??? A reversal of the appeal perhaps?

Hardly. I included a paper copy of a photo of Eli with my exhibits for the appeal. You know, to put a face on apraxia and our claim. And THEY SENT IT BACK. 

Apraxiadad said, “Wow.” I said, “Wow.” I don’t know if I am more stunned, offended or confused. It has a barcode so it was clearly scanned with the other 100+ pages. But Cigna then went out of the way to MAIL IT BACK. Why? It’s clearly a copy on copy paper, not an original. Could they pretend to care? If they don’t want to look in the face of a kid who needs help as they review and deny him coverage, then toss it. Don’t waste the postage or my time. 

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Famous characters with apraxia? And, an insurance update.

Many people now know that UFC fighter Ronda Rousey had apraxia (Who knew?), but I got to thinking about some fictional and real life characters that may be undiagnosed apraxics. Pretty much every character from Looney Tunes had a speech impediment of some kind:

Looney Tunes

But I thought of some others as well.

Cookie Monster

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Characteristics: overstuffing his mouth; difficulty with pronouns (“Me want cookies!”); difficulty with eye contact; no “s” on the end of present tense verbs (“Cookie cookie cookie start with C”); careful enunciation of long words (“Me have great i-mag-in-a-tion”). Also, he’s blue, which is the color for apraxia awareness.

Teller (Penn and Teller)

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Teller is the silent one. Characteristics include understanding everything but not saying a word and allowing Penn to “talk” for him.

Beeker

I love this muppet.

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Characteristics: Not only is he a little klutzy and prone to disasters, he speaks in a high-pitched voice with only two sounds: Mee and Meep. He uses tone and facial expressions to communicate the meaning.

The Swedish Chef

Swedish_poser

Another muppet; the Swedish Chef speaks nonsense words that are “Swedish-sounding.” Odd accent, sing-song tone, mostly unintelligible with an intelligible word here and there.

Kenny from South Park

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Kenny’s speech is muffled and totally indiscernible, ostensibly because of his parka. Undiagnosed apraxia? Brain injury from his repeated deaths? He dies in every episode and returns to the next as if it never happened…Hmm, maybe insurance would cover his therapy if a result of repeated trauma.

Who do you think, fictional or real, might have apraxia or another speech disorder?

 

As promised, an insurance update. Cigna split the appeal into two parts: one for past therapy Eli received, and one requesting that therapy be covered going forward. In short, both appeals were denied. The pediatrician reviewing them gave the same reasoning for both. He said that the policy excludes speech therapy for articulation, apraxia, mouth disorders, etc.unless the therapy is needed as a result of a medical condition or injury. He went on to say the documentation I submitted indicates that Eli has apraxia, and then wastes a paragraph talking about the difference between developmental apraxia and acquired apraxia (e.g., loss of speech in adults). But then, he looks at Eli’s initial evals from Feb/March 2015 to say Eli is receiving speech for developmental delays.

Huh? My problems with this so-called analysis are twofold. First, isn’t apraxia a medical condition? Doesn’t Eli need speech therapy because of a problem in his brain? And second, while the good doctor concedes that the documentation I submitted shows that Eli has apraxia, he concludes by saying that this is strictly a developmental delay and that is the basis of the treatment. Say what? If you have been reading, you know that this is hogwash. Apraxia isn’t something he will grow out of. Nor was it something we knew about or that any qualified professional could have reasonably diagnosed when he was 17 or 18 months old.

So, warriors, we carry on. This ends the process for Cigna, but it doesn’t end for us. The next step is to appeal to an Independent Review Organization. They will receive all the documents from Cigna and anything else I deem appropriate to add. Any decision they make is binding on Cigna. In the meantime, apraxiadad is working with HR at his company to change the policies offered to employees and their families so that speech can be covered for kids like Eli, and even kids like Layla, with articulation problems. Even if we can’t get coverage for 2015, or even 2016, we can try to get it for the many years of speech to come.

 

What’s luck got to do with it?

I want to start off with a story illustrating my luck, or lack thereof. About a month ago, I found out through CASANA’s website that I could ask the governor of our state for a proclamation for apraxia awareness day. I filled out the simple form online, and while both the governor’s website and CASANA’s director told me I might be too late, I gave it a shot. Earlier this week, I received a large envelope from Governor McCrory’s office. Hurray! It’s here! I tore into the envelope only to find…

[drum roll please]…

…a proclamation for emergency medical services week. Huh? Sure, I appreciate our EMTs and first responders, but seriously?! Three phone calls and an email to the governor’s office have gone unanswered. If there are any NC emergency medical personnel reading this, give me a shout and I will drop your proclamation in the mail!

I am not a person that was born lucky. We all know someone like that, right? Things just fall into place. Job opportunities fall into their laps without any effort; they forget about a test and don’t prepare and then ace it; trip over their own feet and land on a $50 bill. Things just always seem to go their way, no matter what they do (or, more likely, don’t do).

I am so not one of those people. I trip all the time and never have I found even a penny. Yes, I have many great blessings in my life: I was born into a good family, got a solid education, built a career, made many friends along the way and now have my own sweet little family of four. I never had to think about where my next meal would come from or where I would sleep for the night. But I did not take my blessings for granted, and I worked to make the most of them and more. I was not born a natural athlete, but I was a pretty competitive tennis player for most of my pre-teen and teen years. I excelled in school, but what my friends who just thought I was “smart” did not see was that I spent many hours studying, especially in college and law school, where I often felt insecure, unintellectual, less competent than my peers. My husband was not born lucky; he also worked incredibly hard to succeed in school and build a career that will provide for us. He works hard every day so that our lives can be a little easier. I know he doesn’t know how much we, and especially I, appreciate it (I’ll work on telling you more, apraxiadad!).

So, two unlucky people will probably raise two unlucky kids. The upside to being unlucky is that our kids will learn that many good things don’t just get handed to you in life, but require hard work, perseverance, dedication and strength. And, they will learn that many times, you just have to laugh. Maybe because it is genuinely funny. Maybe because you don’t know what else to do. Or, maybe because you have to laugh or you’d cry. Eli’s apraxia is a challenge for sure, but not one that cannot be overcome with hard work, and not the only challenge he will face in his life. It’s also one that will require lots of patience and support from his family, friends, teachers and community. And sometimes, we are all just going to have to laugh. It takes a village, and today, my village provided the happy(?) ending to my story that began this post.

Another NC apraxia mommy on the apraxia-kids Facebook group posted that the governor already proclaimed May 14 apraxia awareness day before I got to him. See below for the online and PDF versions of the proclamation. Now I just feel really bad for those emergency responders…

NC Proclamation

Update 2:37pm: Apparently I had asked the mayor for a proclamation too. I’ll grab the hard copy today, but here is a link to see it:

Raleigh Mayor Proclamation

Update 3:09pm: I got an email. The emergency services people have my proclamation. McCrory’s office will mail mine on Monday. Only a few days too late! Rolling my eyes…

Don’t forget: Tomorrow is the big day! I’ll be wearing my blue Team Eli shirt to support Eli and all kids fighting apraxia. #apraxiaawareness #apraxiaawarenessday

 

Yes He Can!

I spend a lot of time on this blog, and in real life, focusing on the things Eli can’t do. Today, though, I want to tell you about all of the things Eli CAN do…where he excels and shines. Bear with me for this #mombrag of a post.

  1. Eli’s pediatrician joked when he was a few months old that he “excels in hair growth and eyelashes.” Eli has these amazingly long eyelashes that I bet his sister will kill for in a few years. We hear compliments about them everywhere. He also is a hairy beast. I can hardly go 7-8 weeks without him needing a haircut. When he was an infant, he had this amazingly spiky hair that stood up on its own; it was epic:1475932_10101009560738982_541310273_n
  2. Aside from his physical beauty, Eli is physically strong and fearless. My father-in-law had trouble holding him still for his bris (ritual circumcision) at 8 days old. Talk about making a momma nervous. Eli was a fighter even then. Eli climbs playground structures with little difficulty or fear. If he can’t get up, he keeps trying until he can. Determined little man!
  3. Monkey See, Monkey Do. I am not sure which of my children is which! Eli wants to do everything his big sister does. If she is running around and twirling in the grass, he’s right there with her. If she is singing and dancing, he’s dancing too. And she is very sweet with him, egging him on and laughing with him when he is removing every single couch cushion and finding it hilarious.
  4. He’s smart. Eli can identify all of his colors. He knows many animals that other two-year-olds don’t recognize. When his sister plays hide and seek, he meticulously checks all of the usual hiding spots and never fails to find her. If you observe him, it is clear he is thinking about and absorbing the world around him.
  5. Snuggles. My daughter was not one of those babies who would sleep on me, or snuggle, or want to be held. Eli, on the other hand, seeks that sensory input. Sometimes, he just wants/needs a big hug in the middle of play time. Sometimes, he wants to watch Mickey Mouse pressed up against one of us. And sometimes, he just wants to be picked up and rest his head on my shoulder.
  6. He’s sweet and social/The Ladies Man. For a kid who can’t really talk, Eli sure is popular! The little girls in his class ask repeatedly for “E-I” whenever they see me. He and said girls love to chase each other around the class giggling.
  7. He’s independent. Eli has always been very good at playing by himself. He will stack blocks (he’s also a great builder), do legos, playdoh, nesting dolls and has recently started to like to color. He will ask for help when he needs it, but he’s very comfortable doing his own thing.
  8. (Written by apraxiadad) He loves to eat food and knows what he wants to eat. He will go to the freezer and communicate to us if he wants a burrito, French toast, or pancakes. He will go to the pantry and find Pez, pirate booty, or little bites muffins. If he sees his daddy or sister eat food he will try it because if sister or daddy eats it – it must be good!

I’m sure there’s so much more we could say about Eli. He has apraxia but he is more than any one label. 

I will bury you…in paperwork

 

Hell hath no fury like an angry momma bear with a law degree. Let me explain. When Layla first started receiving speech therapy, coverage for her services was denied because her delay was developmental in nature, and therapy for developmental delays was excluded in the policy. I thought, “Well, that sucks, but let’s get her help now so she does not have a speech issue later.” So, when Eli began receiving speech therapy, we did not even try for coverage, having learned that developmental speech would not be covered when we tried years earlier. But, once Eli began needing more sessions, his diagnosis took shape and I learned more about apraxia, I got mad. My son has a neurological condition that will not get better with time. He is not a “late talker.” That screams medical not developmental! Why do I even have insurance?? And I wanted to scream.

I went to Eli’s therapist and asked for copies of bills for ALL of 2015 to submit to Cigna (that’s right, I named you–pay up!). I’ll spare you the dreadfully boring back and forth, but over several months I received repeated requests from Cigna for different diagnosis codes, NPI numbers, tax ID numbers, and more. Suffice it to say, I am now an expert in billing for speech services. Beyond that, I got the feeling that I was being buried in paperwork. Aw, HELL no. Anyway, after numerous hours on the phone and a lot of back and forth, Cigna finally deemed the claims complete and worthy of a decision…and they were promptly denied for failure to seek pre-certification. In other words, we were supposed to ask Cigna for coverage for the service before getting it. But guess what? We did, in February. And Cigna denied it!

Insurance companies bank on the fact that most people won’t respond to the supplemental requests for codes or more information–and even if they do, they will not go to the trouble of filing an appeal once a claim is denied. Therefore, the insurance company never has to pay out the majority of claims. That is unfortunate, because these extra steps, while time consuming and frustrating, can lead to reversals, and the insurance companies SHOULD be footing the bill for kids like Eli, and for others with medical conditions that require treatment. It just makes sense.

In filing my appeal, I took the extra steps and more. I worked in one of the busiest prosecutor’s offices in the country writing appeals and handling several hundred cases at a time. I also spent a year at a law firm doing, ironically, insurance and med mal defense. So, I am very familiar with how to put together a persuasive appellate brief and how to argue my case. I have set up a mini command center in my office where I keep copies of everything related to Eli’s treatment, including documenting phone calls, getting names of people I speak to, asking for supervisors when necessary, and so on. For the appeal, I wrote a letter detailing Eli’s diagnosis and history in speech, and explaining that in fact, we HAD sought pre-certification, but it was denied. I included exhibits. Eight exhibits. Over 100 pages. Personal letters from my pediatrician, Eli’s therapist, all of his IFSPs (fancy abbreviation for the periodic early intervention reviews), medical research about apraxia, correspondence with Cigna. Insane? Maybe. But momma is not messing around.

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I may need a new folder.

I sent the appeal in this week by certified mail with a return receipt. So, before Cigna could even open the envelope, they had to send back a postcard to me showing that they received it. That way, they can never deny receiving it. I received the green postcard this week. Here’s hoping I get reimbursed for the several thousand dollars spent in 2015. If so, drinks on me!

In the meantime, I also requested billing statements for the first quarter of 2016. I will submit those and undoubtedly be denied. Then, I will send in the same appeal packet, unless something changes with our coverage going forward and retroactively when they decide the first appeal. I doubt it, but I will keep fighting, and I imagine the day when my relentlessness will wear them down.

At the same time all of this was happening, I asked Eli’s therapist’s office to start billing Cigna directly starting second quarter 2016. They sent a letter from his therapist along with the pre-certification request. Guess what I got yesterday in the mail? Yep, a denial. Why, you ask? Because the services requested were for a “developmental delay.” The denials allow for an appeal as well, so I promptly photocopied my eight exhibits, rewrote my appeal letter to explain once again that apraxia is medical, and not developmental, and will head to the post office by the end of the week. Wash, rinse, repeat.

Are you reading, Cigna? The only people you are hurting by denying speech is the children who so desperately want to speak. They know what they want to say, but because the link from their brain to the speech organs is off, they can’t. Can you imagine how frustrating it must be to live in a world where you know what you want to say, but no one can hear it or understand you? I hear you loud and clear, Cigna. You seem to have no problem with communication. But I’m coming and fighting for Eli.

The Five Stages of Grief

Psychiatrist Elizabeth Kubler-Ross developed the “five stages of grief” over thirty years ago after working with terminally ill patients. The stages are everywhere: in pop culture, intro psychology courses…and they have come to apply to any form of personal “loss,” whether it’s a job loss, an incarceration, an addiction, a divorce, and many more. I have found myself progressing through these stages with Eli’s diagnosis of apraxia.

Denial: At its core, denial is a defense mechanism: If I deny that this is happening, I do not have to confront the situation and deal with my feelings about it. Denial can help with the initial blow of pain. But, like any defense mechanism, it only works until it doesn’t. I had my fair share of denial when I learned Eli’s therapist suspected apraxia. “This isn’t apraxia,” I said, “He will talk; it’s just a delay.” “He seems ‘normal.'” I just did not want to think about it.

After I realized that a) I couldn’t deny his apraxia and b) I had to think about it and take action, I got mad. Really, really mad. No one was safe from being a target.

Anger: “Why did this happen to Eli? Look at the other 2 and 3 year olds in his class…they are potty trained and speaking like kindergarteners! They/Their parents think they are so great!” (They are two year olds. No one escaped my ire; I just kept it to myself). “I didn’t ask for this.” “This is my/my husband’s/our fault. We are shitty people and shitty parents.” “I am mad at myself for making all the wrong choices: I should never have gone back to work/had post partum/let him watch TV/fed him formula.” “I am angry that we will have to work harder, spend countless hours and dollars on therapy with no promise of any certain outcome.””I am angry that my attention and resources for my daughter will necessarily be diverted because of this disorder.” Shamefully, I got mad at Eli. “Why can’t you be normal?” “Why can’t you just talk and tell me what you want for dinner, dammit?” I never said these things out loud, and I am quite embarrassed to admit that I had these thoughts, but I started this blog to be open and honest, so there’s that.

After anger, one moves to bargaining; personally I think anger and bargaining overlap, because in bargaining, one thinks of what might have been and how they can go back to the before, before the loss/diagnosis/death.

Bargaining: Secretly, I made many deals with G-d. I promised to be a better person/wife/mother if G-d would just give him speech. I’ll quit my job, stay home and be a supermom; please, G-d, what do you need me to do?

Depression: Once I realized I could not negotiate myself out of this, I got incredibly sad. I was sad for Eli: Will he have a “normal” childhood? When will he realize he is “different?” Kids can be so cruel; will he be bullied/picked on/have trouble making friends? Will he have trouble in school academically? I was sad for me: It may be years before Eli can say, “I love you, mama.” While cognitively I know from his snuggles and sloppy, drooly kisses that he feels love for me, I am emotionally sad that other kids can tell their mothers that, and he can’t. I am sad for my marriage and my family: this disorder and intensive treatment will require resources, energy, time and commitment, and it will necessarily cause stress to the marriage and our family. I want a child who doesn’t have this; I want what I can’t have.

As someone who has struggled with anxiety (and probably some depression) for many years, the episodic depression that comes with the grieving process can be especially hard. I have days where I don’t want to get out of bed; I cry: I drink too much wine so I don’t have to “feel;” I over-exercise so that if my body feels pain and soreness, my heart won’t. But, I keep going and recognize this is a marathon, not a sprint (running pun intended).

Acceptance: Finally, acceptance. This will forever be a part of Eli, of our family, of our life. I will be strong to get him the help he needs. I will immerse myself in the literature, become his biggest advocate, and reach out to others for advice. There is no way to go back and somehow change something for him or our family, and I have a sense of inner calm that wasn’t there before.

So, where am I now? I think grieving is not a linear process, nor one with set timelines, and there are no right or wrong ways to do it. That said, these days I waver between grief and acceptance. I have days where I am very, very sad about Eli’s apraxia. I also have days where I am on the CASANA site learning as much as I can, posting questions to listservs and Facebook, fighting for insurance coverage (more on that in another post) and talking to other apraxia parents about our common struggles, hopes and fears.

Accepting does not mean I am “okay.” I may never be “okay.” What it does mean is that we can, and we will, find a way forward. Life goes on, and while it may not look quite as I pictured, we can still paint a pretty great one.