Max’s talker… it was a long and winding road, but worth the trip

Our son, Max, needs a device to help him communicate. Since Max has apraxia, he has trouble forming words, and since he has fine motor difficulties, he uses some sign language, but he has trouble forming intricate signs. He has always gotten by with word approximations and a combination of actual signs and those he has made up. We had talked about a speech-generating device with his teacher in California back in 2008, but it seemed a long shot for some reason. I’m not really sure why… it’s a no-brainer. He can’t talk… especially at that time.

When we got to North Carolina, we started talking about it, and a little over 2 years ago he got one on loan from the school district. He was great at using it, but it broke down a lot. Then  he got a different one, and it was great, but really big and hard to take to restaurants and such, and it was too heavy for him to carry from class to class.

Then in Fall 2009, I went to an assistive technology (AT) expo to see what else was out there. One thing I found out is that these devices start at $7500 and go up from there. The other thing I found out is that most insurance companies cover them as durable medical equipment. I was so excited… we could get our own!

I found the Vantage Lite, made by PRC. It seemed perfect for him, so I talked to Max’s AT specialist and she got us a loaner. Well, Max loved it! The platform was different from what he had been using, and he really thrived. When the 12-day trial was over, we were so sad to give it up. While the school district had one, another child was using it.

So, in April 2010 we started the process to get our own. It could take six weeks, we were told. I called our insurance carrier and found out that we had 100% coverage for DME… I couldn’t believe it. We, along with Max’s speech therapist and AT specialist, gathered all of the reports we needed, we got a prescription from the doctor and sent it all off in May.

Denied.

What? We were stunned. Max really can’t talk.

We were allowed three appeals. We gathered more information, we rewrote our case. We even modeled it after one that had been approved. We sent appeal #1 off in June.

Denied.

I’m sorry…?

(At this point, it is July and the school district’s Vantage Lite became available, so Max was able to start using it.)

Having been denied twice, we were feeling pretty bad. Thankfully PRC put us in touch with an attorney who donates his time to help people like us get their devices. He asked us to go for a separate evaluation at Duke, which we did. He submitted that report, along with a letter he wrote, and letters from friends and family who have seen Max use the device. It was due Sept. 21; the attorney faxed it Sept 18.

In early  October, we were in California and the attorney called. He got a letter saying that our appeal would not be read because it was late. It was NOT late. So, he went ’round and ’round with them, and they agreed that it was not late and that they would look at it. This wasted three weeks.

Also, while we were in California, we found out that not only was Cris’ employer raising our insurance rates, they were getting rid of our plan effective Nov. 1 (this was an out-of-the-blue, mid-term change… our insurance year is May1-April 30). We would still have the same carrier, but a lesser plan. We didn’t worry about the appeal… surely we’d get an answer before then. And, if not, we honestly thought that they would have to cover it under the plan the appeal happened under.

Well, Nov. 1, we got our approval letter. So, I called PRC and our funding specialist submitted the claim. Our insurance company would only cover it under our new plan… this meant a hefty deductible and a 30% copay… somewhere around $2500. We couldn’t believe it.

While we would pay any amount of money for Max to have this, we didn’t feel that we should. We were totally screwed by a sick turn of events. And, since Max had the device on loan, we had the luxury of time. We decided to pursue this a bit.

I contacted the insurance company. “We’re sorry, but you are covered under your current plan. You can buy the device and appeal afterward.” Somehow, I wasn’t very confident we’d win that one. Cris contacted his employer. Again, we got “sorry”. Our attorney suggested we contact our state insurance commissioner’s office. I did and got a very helpful woman who asked if we were insured by the insurance company, or if my husband’s employer was self-insured using the insurance company as an administrator. There’s a BIG difference when it comes to insurance law. It turns out they are self-insured. Bummer. There’s nothing the insurance commissioner can do.

“Why don’t you have your attorney write them a letter?” she asked. Excellent idea! We could appeal to their sympathies and morals… on a lawyer’s letterhead!

So, back in December he wrote the letter. And last Friday we got an answer.

Not only are they going to cover the device under our old plan. They apologized for our trouble! Obviously it wasn’t totally out of the goodness of their hearts… should we have decided to pursue it, we had a pretty tight case, especially with the three weeks wasted proving we weren’t late.

But, in the end, only one thing matters: Max will have his own device.

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7 Responses to Max’s talker… it was a long and winding road, but worth the trip

  1. Diane Templin says:

    I was rivetted to this story. Thank you so much for sharing. I think of you and your family often. I’ll never forget Max in the swimming pool, and there was something about my face (perhaps he was drawn to round, pie faced women) that Max touched my cheek with his hand and held my gaze for what seems like minutes rather than seconds. Please keep the stories coming.

  2. Len Wood says:

    That’s good news, Michelle. Tortured path, but good ending. My 21-year-old daughter Becky sometimes uses a Voca device we bought, plus printed PECS her mom (a special ed teacher) makes for her, but always manages to let us know what’s on her mind with other ways of communicating. We plan to buy an iPad soon with Proloque software we understand will be very helpful.

    • Michele says:

      Len… I had no idea! Thanks for sharing. When I went to the AT expo, I was going specifically to look at the Proloque software. Please let me know how she likes it!

  3. Ellen Seidman says:

    GO YOU! I have also fought the insurance company, and won. What a sweet victory. The Vantage Lite looks very cool. Max is into his iPad/Proloquo2Go, but mostly he loves to watch YouTube videos on his iPad…sigh.

    You have excellent taste in boy names. Our Maxes look like they would have a cool playdate together!

    • Michele says:

      Thanks, Ellen! Yes, I bet they would have a ball together! Our Max is Maxwell Chase.. yours?

      We thought about the Proloquo2go software, and that’s what I went to the expo to look at. At that time, the iPad hadn’t come out. I worry about Max breaking an iPad… sometimes he tosses his Vantage when he gets mad.

  4. Debbi Henry says:

    I’m so glad you continued to fight the insurance company! We had a very long, and hard road to getting our daughter’s VL as well. But it was sooooo worth it!

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