When the system tries to fail you...

"WARNING- this is a long post"

WOW! Has it really almost been 3 years since I last posted?! SOO much has happened in 3 years. We moved from Florence to Summerville, SC. So now we're only about 1/2 hour from Charleston. Oh yeah, we have 4 kids now!  Yeah that's right, we had another baby. Aidan Nathaniel was born on November 1, 2015, so he's just over 4 months old right now.  He's a dream.  Seriously, I'm so in love with that boy. Landen is in 2nd grade, Carter is in 1st, and Kayla will be starting Kindergarten next year. Can you believe it? I can't.

There is a lot to go over, so I'll start with Landen...


Dr. Suess Day at School

First and last day in Kindergarten

At the beginning of Kindergarten Landen's cochlear implants were on the fritz. In fact, his left cochlear implant stopped working entirely.  Once we got moved to Summerville in October 2013, I started the nevermore battle with the insurance company. It was a long fight. A 6 month fight that left this momma bear feeling strong, but tired. I was on the phone with the insurance company sometimes 2-3 hours at a time, and equally that long with our third party company through which we had to order them through. 

I had concluded that the out of pocket expense was going to be hefty. So we started a go fund me account and we couldn't believe the results. We had perfect strangers donate to us. Our goal was $3,000 and we exceeded that amount by far. We reached our total out of pocket expense of $6,000. It was unbelievable. We felt the love. 

Then one day we received a letter in the mail. A not approved letter. I was livid. Infuriated. My heart shattered as I read on. 



My rage ended in a very lengthy letter to Blue Cross Blue Shield, and I posted it in a rather hostile way on their Facebook Page for the world to see.

"To whom it may concern,

I am writing you to ask that you help parents like myself, get the help needed to get insurance benefits that are medically necessary approved.

My oldest son Landen was born profoundly deaf in Eaton, Ohio. He received his first set of hearing aids at only 3 months old. He received no sound from them. So he underwent numerous testing to see if he qualified for cochlear implants. Sometimes we would drive an hour each way up to 3 times a week. As it turned out, he was the perfect candidate. Our insurance at the time, United Healthcare didn’t cover a dime of any expense that had to do with his hearing. I had to fight to get coverage for his speech therapy. Their reasoning was that if he had become deaf after he was born then they would have covered it, but because he was born deaf,  it was considered a “preexisting condition” and their hands were tied. The only way he was able to receive his cochlear implants was through a program called BCMH in Ohio. They covered every dime of his 6 hour $329,000 surgery and equipment cost. He received them when he was 1 year 4 days old; November 19, 2008. He was officially activated on December 10th 2008. While living in Ohio we received all of the developmental programs needed and offered to keep Landen on track. When he turned two, we met with our local school system to set up the IEP process. Our ideal school would get Landen ready to be mainstreamed with “typical hearing” children. We looked diligently at the preschools around us and they didn’t fit Landen’s needs. After we received negative feedback about what we as parents expected our school system to offer him, we put a for sale sign up in our yard and moved an hour away to Dayton to a school district that we knew would give Landen the education he needed and deserved. After we put Landen in the auditory/verbal preschool our lives changed. He barely uttered “ughh ohh” when he began, and after just the first semester he was beginning to speak full sentences. He worked very hard in this classroom and the teachers were amazing. We worked even harder at home making sure we stuck to the plan. By the time he left that preschool you could barely tell that Landen was deaf.

In September 2012, my husband was offered a job in Florence, SC. We were very hesitant as we were comfortable with our school system and the benefits Landen was receiving. We thought long and hard. We chose to move to better our lives. His employer got us in contact with Florence School District One’s Director of Special Education to have our IEP transferred. Everything seemed to be falling into place until we arrived at the elementary school to enroll Landen into preschool. They were going to place Landen into a classroom with children that had developmental disabilities. Any child who comes through their door with an IEP automatically gets grouped into a classroom with developmental disabilities. They didn’t take the time to read his IEP. Had they of, they would have known that Landen was an amazing speaker and his teachers in Ohio spoke very highly of him. The letter gave precise directions on what he needed work on and the services he needed to help him thrive. He was ready to be mainstreamed with typical hearing peers. We refused to place him the class, as it would have had a negative impact on the speech development we had already fought so hard to get. So we fought for a class that had “typical hearing” children. After he was placed in a class two months later, it took the school district 2 months to have his IEP meeting and 3 months before he received his FM system which helps him hear the teacher better. These were all services that should have started from day one. We took everything in stride and helped Landen as much as we could from home.

Landen started Kindergarten in August 2013 at Briggs Elementary School, in a typical hearing classroom and with his FM System ready to go. Shortly after school started his right processor started acting up and eventually completely stopped working. We started working with our audiologist to get them covered by our insurance, but Blue Cross Blue Shield South Carolina covered 0% that had anything to do with Landen’s equipment. We were completely stuck and had nowhere to go. Each cochlear implant costs $13,000. That would be $26,000 for two, as he is bilaterally implanted.  As a family of five there was no way we could ever afford that, so we decided to wait until we could change insurance companies and try again. My husband was offered a new position at Roper St. Francis Hospital in Charleston, SC as their new Executive Chef, and so once we found a new house I started calling Dorchester School District II and I was pleasantly surprised. William Reeves Elementary School knew exactly what I was talking about and had absolutely no problems giving Landen the services and systems needed. We moved to Summerville, SC on October 18, 2013 and Landen started school October 21st. After our new insurance went into effect I immediately started getting paperwork together to get Landen a new processor through Cigna Health. Once again we were shut down.

Over the course of the next couple months Landen’s left processor started acting up. Sometimes he could hear and sometimes he couldn’t. This was a very intermittent problem. In December we elected to change insurance companies again, this time to Blue Cross Blue Shield North Carolina. January 4, 2014, I called and talked to a representative who told me that Cochlear Implants were indeed covered by their company but that it needed to be medically necessary to receive them. So I contacted our Audiologist and she told me to get in touch with Cochlear America’s to work with one of their third party companies to help with our insurance claim. So I contacted SunMed Medical Solutions, who explained their process and told me that it typically takes about 4-6 weeks to get everything approved with our insurance company. After everything was sent in we waited for about 4 weeks with no word. We tried to contact SunMed but we were unable to reach them. Meanwhile, Landen’s only processor was declining at a rapid rate. I’m beginning to become desperate for answers. At the 8 week mark, we found out that SunMed was an out-of-network company. We felt like the last 8 weeks of our son’s precious time was completely wasted.

So we were on the phone with Landen’s audiologist again and she gave us Access Mediquip’s information. They also have a contract with Cochlear Americas. This time though, I found out early on that they are in fact an in-network provider. On March 4, 2014, I immediately contact them almost in a panic. They were very helpful. They immediately sent me all of the paperwork that we needed by email and I immediately sent everything off to our audiologist. After 13 long days I received a very compelling Letter of Medical Necessity from our Doctor along with the other paperwork needed. So on March 17th I sent everything back to Access Mediquip. I received an email from Access Mediquip on March 28th that stated that Blue Cross Blue Shield had received our claim and that it could take up to 15 days for a decision to be made. April 1st I received a denial letter in the mail that was dated March 28th. They denied our son’s new cochlear implant processors the very same day they received our paperwork. Our letter stated that it wasn’t medically necessary for Landen to receive upgraded cochlear implant processors.

I want to be completely honest here. The amount of negative emotions that ran through me is just impossible to explain. I felt terrified for our son. Everyday his cochlear implant gets worse and worse. How can we possibly go on like this? If this processor completely stops working he will have zero access to sound. We gave Landen an auditory/verbal upbringing so he did not learn sign language as it would have delayed his verbal language development. This means he would no longer be able to attend school. Every day he attends school his teacher notices a decline in his hearing ability. If it weren’t for his FM system, he wouldn’t hear half of the instruction going on in the classroom. Landen absolutely loves school and it would be absolutely heartbreaking to tell him he couldn’t attend because we were unable to get him the equipment needed to help him thrive. I am most definitely not one to give up so I contacted our insurance company. I was on the phone with Blue Cross Blue Shield North Carolina for a total of 6 ½ hours. I was tossed from one person to the next, from one division to the next. No one could tell me what was going on. No one could even find our claim, until the last representative told me that it wasn’t medically necessary for him to receive upgraded cochlear implants and that’s when I read her the very first paragraph in our Letter of Medical Necessity.

“Landen Hammel, a 6 year old male, has bilateral severe to profound sensorineural hearing loss. He uses Nucleus Freedom series cochlear implant systems for both right and left ears. We have been providing audiological services to this patient at the Medical University of South Carolina since the family relocated to SC in the fall of 2013. This patient currently utilizes one Freedom sound processor on his left ear, which is more than 5 years old and is functioning only intermittently. His right ear processor is non functional and he is currently unable to hear or understand speech in his right ear.”

Our doctor ended up having a peer to peer review over our case with a doctor with Blue Cross Blue Shield. It was decided that if we could appeal with medical testing showing that he is unable to hear with his current processors we could get this approved. We found new hope and immediately started preparing for our next steps. So we went in and had a two hour test done to show that he indeed cannot hear the way he should be hearing to be a functional hearing person. Our audiologist sent us our test results along with a new Letter of Medical Necessity and I forwarded everything to Access Mediquip on April 11th. I received an email on April 17th letting us know that our insurance provider had received our new claim and that we were waiting for a reply about coverage.

On the evening of Friday April 25th Landen’s processor turned off and would not turn back on. It took over 8 hours before we could get it functioning again. Meanwhile, our 6 year old son didn’t understand why it wasn’t working. Crying because he couldn’t understand what we were saying. Crying because he thought he couldn’t go to school anymore. It was heartbreaking. How can anyone live like this? Never knowing when the day will come when it won’t work at all. It’s a constant stream of stress, always flowing through our veins. Even now it can take up to an hour to get it turned on. I would hardly call his current processor “functioning”. Even though born deaf, hearing is all he has ever known since he turned 1, and taking that away from a 6 year old child isn’t right.

On April 28th we received an email from Access Mediquip stating that they had still not heard from Blue Cross Blue Shield and that he was going to get in touch with his manager to see if we could expedite our process a little. Then today April 30th I received yet another email stating that the insurance company is sitting on our claim and that it take up to another month. It’s okay that they can receive and deny our claim in the same day, but when we send in factual information that they can’t deny it takes them months to make a decision. We’re still unsure how long we will be waiting. We’re not even sure if Landen will still be able to hear when we receive a final decision.

I’m not writing this lengthy letter to tell you our life story or to get pity. This is purely just to show you what we’ve been through. What other families are going through right now. This is about a child, a child who is going to be apart of the United States future, and he’s being set up for failure. No one will ever know what it is has felt like to be the mother of Landen Hammel. No one will ever know what it has been like to literally sit and watch Landen suffer through school work or have trouble reading a book. No one will ever understand how Landen will feel when his access to sound is no longer available. They will never get to hear the sounds of him crying because he thinks he will no longer be able to attend school. No one will ever understand what it has been like to be Melissa Hammel, the mother of Landen Hammel. The weight of Landen’s world has been put on my shoulders. It is my responsibility to get Landen the best medical equipment possible. I have done all I can to get what is needed. It’s their turn to hold up their end of the deal. It shouldn’t be this hard to get help. It shouldn’t be this hard to get durable medical equipment for your child. There needs to be a better process for parents. I know we’re not the only family suffering. We’ve sacrificed a lot for our family, for Landen. Other families may not have the opportunity to do such things and they need help. We ALL need help.

First off I would like to know if there is a way to get Landen’s claim expedited. What can be done about our situation and how can we prevent this from happening in the future? I feel there needs to be a new process for families getting medical claims approved. Most hospitals aren’t dealing with insurance companies anymore, which in turn put more pressure on families who are already dealing with so much. I feel there should be insurance liaisons on location to help with insurance claims. Families aren’t given enough information when starting the process. As hard as it has been to get cochlear implants for Landen through the numerous insurance companies we have been with, I feel that in this day in age if it is medically necessary, it should be covered.

I ask that you please send me a response letting me know if something can be done about the situations families are faced with everyday when dealing with insurance companies and hospitals."

About 3 days after posting this letter on their Facebook page I got a phone call from the CEO's secretary. She told me that they were working hard to get our claim approved. Then about another week went by and I got this....

Then another week went by and I called, and called, and called, called some more. I just kept getting the run around from the third party company..."we're waiting on this", "we're waiting on that" "blah, blah, blah". So when things seemed to really go no where, I demanded to speak to a supervisor, a manager, the person in charge. I was desperate. Landen had went most of the weekend not able to hear a lick. It was time to get this thing done. So I had Mark step in. He got the job done. They overnighted his cochlear implants....not without a little more pressure from me though. We got them.

and this is what happened next....

The moral of this happy story is that when the system tried to fail you, never ever give up. The hard work on my part was done. Then came Landen's hard work trying to learn how to hear again.

XOXO

Mel