A chapter comes to a close


Many of you have followed my nearly two-year quest to have Cigna cover Eli’s speech. If you didn’t, go back and read the old posts before this one. Today, I received the above check and receipt, which is a reimbursement for all of Eli’s 2016 therapy, when he started last summer with his current therapist, and 50 sessions in 2017. A couple weeks ago, we also received a check from Eli’s first speech therapist, who worked with him for the first half of 2016 and also in 2015. 

Receiving these reimbursements is bittersweet. On the one hand, I am grateful that we have been able to provide Eli with so much help. On the other hand, in fighting so hard, I wanted things to change–not just for Eli but for ALL children who are trying to find their voice. Speech therapy coverage for apraxia varies widely, from no coverage at all to a set number of sessions a year to the very lucky few who receive close to or even full coverage. The bottom line is, most of what is covered isn’t enough for these kids who need intense intervention, often for many years. 

The fight is not over; it is just beginning. I am not closing the book and calling it a day. This is one chapter that I’m proud to bring to a close, but I can’t wait to share where the story goes from here. It will be full of surprises for us all. 

It Takes a Village

When I first became a mother nearly six (!!) years ago, I assumed that my child could get everything she ever needed from me. I was Mom, after all, and I could do it ALL. I very quickly learned that that was not the case. I was isolated, overwhelmed, exhausted, crying all the time and my body was not my own. She was not even a month old. What had I done? I immediately went online and found a local stay-at-home moms group that was meeting in a park the next day. I went, wearing yoga pants and a messy bun, with my tiny baby in a huge stroller. There were maybe 7 or 8 women there, all first-time moms with interesting careers and new babies. We sat in the shade (it was July and HOT, y’all), fed our babies, rocked our babies, traded war stories about childbirth, and, of course, went to Starbucks for coffee. Two of the women I met that day became two of my closest friends in town, and we have stayed in touch despite moves to new states, more kids, jobs and life. From that meetup grew a huge mommy meetup group where we were constantly busy with playdates, classes and activities. I made some wonderful, lifelong friends and had support to navigate the baby and toddler years and being a stay-at-home mom.

I learned then that I was so very wrong about this whole mothering thing. I could not do it all myself. I am not one to ask for help, but I needed it. I created my village of moms, and we figured a lot of this parenting stuff out together. When you have a child with additional needs, though, the village takes on new meaning. I am ashamed to say that it was not until now that I realized what an incredible village Team Eli has become.

Eli has wonderful, loving grandparents on both sides of our family. Two of them hosted both kids for several days so that apraxiadad and I could have a much-needed vacation. Eli got a stomach bug on the second day, and without complaint, they took care of him through several vomiting episodes and many loads of laundry. The other two grandparents are local and help us every week. They take Eli to speech when I work, pick up Layla when Eli is at speech with me and watch the kids if they are off school and we both have to work.

Eli had teachers this year that have gone beyond the call of duty. Eli started camp this week. He is back at his old preschool where all of his peers are neurotypical. I was a little extremely nervous about the whole thing. Eli’s lead teacher from last semester got in touch with me to check how he was doing and was thrilled to hear he was doing well and having fun. One of his assistant teachers spent the first two full days at camp helping Eli transition and making sure he had visuals and other supports in the room. That teacher forwarded pictures of Eli at camp to another assistant from the class, who then got in touch with me to see how Eli was doing and to tell me how she adored working with him and would love to babysit. Yes, please! Yesterday, the school speech therapist Eli had since January visited the camp as well. She offered suggestions and supports, like encouraging him to use his words and reciting the classroom rules (listening ears, quiet voices, walking feet, stay in your own space) which was his favorite job to do at school and helped with behavior. Today, an administrator from the county who has been part of the last two IEP meetings and has also spent time with Eli in the classroom went for a visit too. I was floored that so many people were willing to take time out of their summer break for Eli. Several members of the staff at camp remarked to me how all of these visitors raved about how wonderfully Eli was doing, how much progress he had made this year and what a sweet boy he is. In turn, the teachers shared with me that they could see how much the camp staff and the kids in his class were truly enjoying him.

Our speech therapist: Eli’s therapist is on vacation for a couple weeks, and I do not know what I will do with myself! She left me a page and a half of notes for “homework” so that he does not lose ground while she is gone. I may bill her for my time. 😉

Eli has his parents, of course, and his sister. She gets Eli up in the morning, and I often find her in his room, still in pajamas, reading books to him, dancing to music with him, or just talking to him and asking him questions. It is clear that they adore each other. Eli is able to interact with her in ways he could not even just a few months ago.

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These are just highlights of Team Eli; I could go on and on. There are many friends, acquaintances, virtual “friends” and even strangers who don’t bat an eye at Eli’s speech or lack thereof, include him in activities and talk to him as they would to any little boy. Thank you. I cannot put into words how much it means to see Eli treated as just one of the kids.

On to the updates!

I am thrilled to share that next year, for pre-k, Eli will be attending a blended class. This is a class with both typical kids and kids with IEPs. The lead teacher is certified and trained in both special education and regular education. Everyone on the IEP team agreed that this would be a great place for him to work on his communication and play skills. In other words, he will have to talk and have conversations because these kids will want to talk to him.

Eli is talking more and more and becoming more understandable. He has started spontaneously singing songs from school, like The Five Little Ducks. He tries to sing along with songs he knows, mostly the Trolls soundtrack (thanks to his sister) and most recently, the Mickey Mouse Clubhouse hot dog dance song. On repeat. Over and over. He is understanding questions and responding more appropriately. On the second morning of camp, I asked him who he wanted to play with that day. I would do that every day on the way to school and he would name all of the kids in his class, generally in the same order. I expected him to recite that answer. Instead, he said the name of a little girl in the class, and the teachers confirmed that they have been playing outside together. He has started using “I” instead of always referring to himself as “Eli.” His sentences and 3-4 word phrases are becoming more complex. On the way to and from his sister’s camp, we pass a horse farm, and each day, each way, Eli has said, “Horse!” Today, he said, “Horse! I see two more!” Indeed, there was one horse and two together further down the road. Proud mama moment right there that may or may not have led to some tears.

Thank you, Team Eli, for all that you do for us.

#TeamEli

#Takethatapraxia

 

 

 

50 shades of speech/Cigna responds

Please read the entire post for some good news!

After my numerous Facebook posts on Cigna’s page, plus communication with the main HR person at my husband’s employer, Cigna has responded. I’ll attempt to keep this brief. Despite the external reviewer’s finding that speech is medically necessary for Eli, the terms of the plan only cover restorative speech. In other words, if you were in a car accident and lost the ability to speak, your therapy would be covered. However, if you are like Eli, and never had the ability to speak, your therapy is not covered. 

BUT because Cigna was completely inconsistent in their reasons for denying our claims (not medically necessary/not rehabilitative/not covered under plan/etc.), and probably because I was (am) a big mouth, they worked out a deal with my husband’s employer. They agreed to cover 50 sessions of speech for each year we’ve been in speech so far–2016 and 2017. “Cover” does not mean fully covered/free for us, because of the type of plan, but we will be responsible for around 20% of the bill for those 50 sessions instead of paying in full. The 50 sessions covered all but a few of 2016’s sessions since he only went twice a week for most of the year (hello, 80% reimbursement!). We have already gone through our 50 for 2017 in the first four months of the year, so we will be reimbursed for around 80% of what we have spent to date. For the remainder of 2017, we will pay in full for each speech therapy session. However, because we’ve met the family deductible, our other in-network costs for ANY in-network healthcare (all of our providers are) for any member of our family will cost us 20%. Next year, 2018, Cigna made clear that we are 100% responsible for all costs with Eli’s therapy. But I’ll give it a good fight.  

While we heard all this from Cigna last week, I waited to post until it was on paper and truly real. Today, I received a stack of EOB’s of all of Eli’s speech claims from 2016-2017. They were reprocessed and expedited last week. While I have not gone through them in full, I consider this a big win for #teameli. 

This news comes just in time for apraxia awareness day on May 14, and this year, our special day coincides with Mother’s Day. I am so proud of Eli for how hard he works and how far he’s come. I am proud to be a mommy of such a special, sweet, funny, loving and smart boy. His newest skill that he must have learned at school is spontaneously singing Bingo–while the lyrics are mostly word approximations and very abbreviated, he does the clapping and the letters perfectly. I’ll try to get a video soon. 

Thanks for reading. #teameli #takethatapraxia

You have outdone yourselves, Cigna

My latest Facebook post on Cigna’s page:

This is my three year old son, Eli. Eli has apraxia, which is a severe communication disorder. It is neurological–his brain knows what he wants to say, but there is a disconnect and he cannot make his speech organs say it. The only treatment is intensive 1:1 speech therapy. It is not a developmental delay, and he is not just a “late talker.” His brain does not work the way ours do.
 
A year ago, Eli was non-verbal. Today, he speaks in some sentences and short phrases and is slowly becoming more intelligible. He works hard but has a long road ahead. We have paid for his services out of pocket because Cigna claims they are not covered. In fact, they are.
 
Last year, we successfully appealed Cigna’s denial of our claims. While Cigna denied them as not medically necessary, or not covered as short-term rehabilitative, the external reviewer strongly agreed with me that they are medically necessary and covered under my plan.
 
Despite this binding decision, Cigna has continued to deny coverage for Eli’s speech therapy. So, we have continued to pay ourselves. Recently I filed another identical appeal, which Cigna denied for the SAME REASONS as last time, which is egregious, offensive and in direct conflict with what the external review said. On top of that, I was provided with NO information about how to appeal externally again.
 
I am perplexed, angry and frustrated that Cigna continues to do this to us and deny my son coverage of the services he so desperately needs. When I called yesterday and inquired further, I was given the party line that speech therapy is not covered under my plan, when it has been made clear to all parties that in our situation it is. I was told my only remedy was to call the Department of Labor. I spoke to the Department of Labor, and it is clear that my rights are being violated. I will not stop fighting for my son. And I will not quietly go away. Cigna should be ashamed.

What apraxia looks like: 3 1/2

Here is Eli doing some speech drills with me. You can see how much he is working just to get his speech organs to move correctly to say what he sees in the pictures as well as attempts to correct himself with and without PROMPTs (the hand movements I make). Proud of my little buddy! It’s a long road ahead but he is working so hard. We now have 2-4 word sentences and phrases and so many more complex words and sounds. #teameli #takethatapraxia

New Year: The more things change…

Happy new year! Since we last spoke, I have several things to report:

  1. Insurance: Well, despite my best efforts, we did not see a dime from Cigna. Once they finally reprocessed the 2015 claims after the appeal, they applied them to our deductible…and we fell just short. In other words, because we are on a high deductible plan, we need to spend a certain amount of money out of pocket before Cigna pays anything. That said, I have called Cigna to initiate another appeal for 2016’s speech claims (yes, they all have been denied as “not covered under your plan” despite the successful appeal, and yes, I have to appeal again), and I am fairly confident that we will meet the deductible and see some money back in our account. It makes no sense to me that I have to initiate an identical appeal when one was just decided in our favor, but I am happy to photocopy my 100+ pages and exhibits and wash, rinse and repeat.
  2. Speech: Eli continues to receive private speech therapy 3 days a week.
  3. Smarty pants: #mombrag. Eli knows his entire alphabet, can count to 20, loves identifying letters, numbers, shapes, colors, animals, characters and more. His speech is not super intelligible when it comes to certain words, but he loves to identify something, show it to the listener and get reassurance that the listener has understood by repeating what Eli has said. It makes him so happy!

The last update is lengthy: School. Since Eli turned 3, as I detailed in my last post, he received an IEP through the county. He was attending his regular preschool with substantial support from a special ed teacher 45 minutes a day. She was great and really went out of her way to modify the classroom with pictures and communication boards so he could better communicate. Unfortunately, it became clear to everyone working with Eli including us that while he was making a lot of progress, he was not making as much progress as he could in a different environment. His teachers meant well, and were eager to help, but they are not trained to work with kids like Eli and had ten other 3 year olds to care for too. I don’t fault them at all; they truly tried. Through a series of conversations with his teachers, staff and IEP team, we made the decision to move Eli to a county preschool that is visually structured. This link provides a good explanation of what a “visually structured” class is. So, big man is attending a public elementary school that also has pre-k. I should note that Eli has not been diagnosed as on the autism spectrum, but the inability to communicate and behaviors and difficulties that stem from that mirror kids who are on the spectrum. And, some kids on the spectrum also have apraxia or other communication challenges. He is not at the same school as his sister, only because they don’t have this pre-k setup,  but they are on the same calendar and schedule and a 14 minute drive apart.

Yesterday, Eli began his stint at his new school. He had a great first day. He went right in and found his favorite ball toys which he plays with at speech:

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There were no tears, no “what the hell am I doing here and who are these people?” looks, just a kid who walked in, sized up the situation and did his thing. I don’t know what his right hand is searching for in this toy.

The teacher knew that I was nervous, as she had been in contact with me in the days leading up to school starting, and texted me updates throughout the day. I am happy to report that he had a great first day! Here are some of the things he did:

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The class is small–nine kids ranging in age from 3-5, one teacher and three assistants. Many of them are on the spectrum and/or have developmental delays, communication disorders, and the like. In addition to our speech therapist, Eli will see the school speech therapist 4 times a week. When I picked him up early to go to speech, he was tired, even though he had napped! But when I asked him yes or no questions about whether he wanted to go back, see the teachers, see his friends, and play, I got resounding yeses. Today, he wanted me to walk him into his class, but his teacher opened the door and he walked right in without looking back. I am hopeful that Eli can make great strides in this setting.

 

 

HUGE NEWS for #teameli!

Our nearly year-long fight with Cigna has come to an end. We received the decision of the final appeal in the mail today. Cigna’s decisions to deny coverage are overturned! Team Eli is overjoyed. This means we will be reimbursed for his 2015-16 speech, and that going forward, insurance will be covering his speech.

In sum, the reviewer stated: “According to the plan information provided, individual speech therapy is a covered benefit for this patient…Cigna covers as medically necessary ‘a prescribed course of speech therapy by an appropriate healthcare provider for the treatment of a severe impairment of speech/language and an evaluation has been completed by a certified speech-language pathologist…’ Per documentation provided, and as outlined clearly in the appeal letter written by the patient’s mother, he also meets all of the additional required criteria for coverage….The health plan’s determination is overturned in whole.”

Thanks for the shout out, Reviewer Number P064, MD, MPH!

I am honestly still in shock and could not have asked for a better outcome…unless of course they had covered this as medically necessary from day 1, saving time, energy, paper, postage, financial resources and grief. Eli has a long road ahead of him, and this decision reaffirms what we have known all along. I hope that this gives hope to and sets a precedent for others fighting this fight. To the others fighting for their kids, I can only say: Don’t give up the fight. I doggedly pursued this to its end, and it was worth it.

Another apraxia parent told me to get very comfortable with the word “advocate.” I think this is a good start.

 

 

 

 

Team Eli

Hello, dear readers! It has been awhile since I posted. I am not entirely sure where the rest of summer went! School has started, so I’d like to share some updates:

  1. Insurance: We remain at the last level of appeal. Any decision made by the independent, outside organization is binding on Cigna–whether they pay up or deny it. We should have a decision this month. Stay tuned.
  2. IEP: Now that Eli is 3, he aged out of the infant-toddler program and was deemed eligible to receive services through the public school system. His evaluation was hard for this mommy to read. In addition to the obvious communication problems, he also has some cognitive and social-emotional delays. When we had the IEP team meeting, I was pleasantly surprised at how much they worked with us to insure he received the most help. This year, is going to his same preschool (regular preschool, not a special ed one that was offered but was only 2 hours a day…not really workable for us), but every day a special education teacher comes to work just with him for 45 minutes. She is wonderful and is helping him with transitions by making a picture schedule of the preschool day, learning to sit at circle time (also with a picture of him sitting), and of course, the communication piece. He also has a speech therapist who comes to see him at school once a week for 30 minutes. The kids all love Eli’s “traveling teacher” and try to play with both of them. Eli’s teachers have known our family for years and are eager to learn and help. This is all in addition to the private speech we are doing.
  3. Private speech: Eli is going three mornings a week to private therapy for 30 minutes. We switched therapists this year, mostly because of scheduling, but I had heard about our new therapist from a special ed advocate, and she is awesome! She has immense patience for Eli’s antics when he doesn’t want to cooperate and utilizes PROMPT, Kaufman, and many other techniques to work with him.
  4. Family: Eli’s sister started kindergarten. Eli’s Nonnie and Papa (my parents) moved about 20 minutes away this summer! They have been a huge help with the logistics of the kids in different places at different times. Eli loves giving Papa kisses and being silly with Nonnie.

Now that updates are out of the way, fall also means something important for us: The Triangle Walk for Apraxia. This was our first year participating, as last year, we didn’t even know what apraxia was. The walk was held in a huge park downtown, and I think about 200 people came out. Team Eli set a (low) fundraising goal, and we blew it out of the water. I was humbled by all of the support from family, friends and colleagues. In total, our team raised well over $1000 for CASANA. We were the third-highest fundraising team. Not bad for our first walk! We wore our team Eli shirts (though sister refused because it is not “beautiful”).

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We had ten members on our team. Our wonderful neighbors brought both their kids, who are the same age as ours. The walk was a great event. Eli (and all the kids with apraxia) got a medal, there was a magician, goody bags and certificates for all kids, lunch, facepainting…and of course, it was nice to see old and new faces. For me, the best part was talking to parents and older kids who have “beaten” apraxia. We know one family who has been incredibly helpful–their son had apraxia and is now in college. He has worked at Eli’s preschool and Eli adores him. Not only is it so nice that the families with older kids come back for the walk every year, but they helped give me hope that there is a light when I often feel the grind of therapy, see little progress and want to give up.

Here is Eli with his medal:

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Next year, I hope to get more involved with the planning of the walk. #teameli #takethatapraxia

 

A letter to my son on his third birthday

Dear Eli,

Happy birthday, bud! But, what in the world…how are you already three?! It seems like just yesterday you made me a mommy of a little boy. In many ways, Mr. Eli, you still are my baby. You are, and always will be, my last born. You are still wearing diapers. Hey, no shame in that game. We know it will happen when you are good and ready. You still enjoy being held, wrapping your arms around me and nuzzling your head into your perfect spot on my left shoulder and neck. You still like me to pick you up out of your big boy bed like I did in the crib and carry you downstairs in the morning and after nap, and I do it every time you ask, even though your 30+ pounds are getting so heavy. You are still learning to share and take turns. You can be very impatient. You don’t always clean up or put your dishes away when I ask you to. Often, you make a huge mess when you eat. Drinking water from a cup either ends up in your mouth or all over your chest. You have not yet said “I love you” or called for “mama.”

But what I don’t do enough, E, is tell you how incredible I think you are. You are quite possibly the happiest little guy I know. You love to laugh, and your giggle is infectious. You are curious about the world around you. I can see that you are learning and absorbing even if you remain silent. You love climbing, somersaulting, sliding, swinging, and generally “being a boy.” You love to go to the pool and swim around with your floaties and jump into the deep end. You are so fearless that you make me nervous! Whenever someone asks you for a hug or a kiss, you are the quickest to comply. You are independent and content to play by yourself. When you are done with an activity, whether it is a toy, a meal, a TV show…you are DONE and you let us know, either by saying “Dah!” or simply getting up, taking my hand, and leading me away. You love your sister, except when she gets in your face and pushes you to say a word correctly (“Eli, say mama!”), or does not let you have one of her toys. You run to the garage door with a huge grin on your face when your dad comes home every evening. You love to roll around in the couch pillows and run wild in open spaces. You are an excellent trainer, exercising along with our exercise videos with a smile on your face. This is good, because you have a love for white carbs and a distaste for vegetables. We are constantly complimented on your eyelashes–I think you will break some hearts one day.

This year, you moved into a big boy bed, learned to eat with a fork and spoon and learned to take your pants on and off (which you find hilarious). You have begun to take an interest in coloring, rubber stamping, sidewalk chalk and other art projects. Your TV tastes graduated from Mickey Mouse and Sofia to Monsters, Inc. and Despicable Me. Which you watch over and over and over. You taught yourself how to navigate an iPad to the best content YouTube Kids has to offer. You have found new and creative places to hide things…we finally found that old DVD remote this year after many, many months.

And, this year, we went from not knowing what apraxia was to having a diagnosis. But you took it all in stride. You gained confidence in your communication. You say “uh oh” and “dada” with perfection. You have more signs and word approximations than I can count on my fingers and toes. You love music and you love to dance, which sometimes looks more like marching. I watch you line up your toys just so, stack your nesting dolls, knock them down and do it all over again (also hilarious to you). You know all of your colors and love to tell me them. You are SO CLOSE to perfectly saying “Blue.”

No matter how hard this year, or the last few, have been, or the next few may be, you are my shining star. I am so proud of you. In these three years, you have taught me lessons that I was unable to learn in thirty-five. I have big dreams for you, kid.

 

Love,

Mommy

 

 

 

What does speech therapy look like?

I am often asked what exactly Eli does in therapy. A lot of it at this age is, necessarily, play-based. The therapist follows his lead with activities, toys and games that he is interested in at that moment and works on the appropriate sounds and/or signs. She makes him complete a task, like putting all of the puzzle pieces in the puzzle he chose and saying “all done” before moving on to the next toy or activity. Clearly, this can be frustrating for any almost-three-year-old, but I appreciate it because neither myself nor apraxiadad nor grandma nor teacher nor babysitter would push him like she does. She gets him to do things that he won’t do for us as regularly. He’s said his name to her (eeeeeyiiii!), and this was the first time I heard say “out” with the t at the end.

As an aside, how is he almost 3?!?