Vantage Lite progress

Natalie has made amazing progress in the 2 months that she's had her communication device (we refer to it as her "talker").  She is getting good at putting together full sentences with some prompting as she goes.  Without prompting she can ask for an item she wants by saying it's name and then please (it took only a week or so of prompting the "please" before she got to use it consistently).  It is amazing how quickly she's picking it up!  She can now say hello and goodbye, tell jokes, read stories stored on the device, ask for what she wants to eat, and tell you what TV show she wants to watch and that's just what I can think of off the top of my head.  Her speech therapist said last week that she knew that she was smart and would do well with it but she is still amazed by how quickly she is learning to use it.  In a few weeks I will be attending a training session that the company that makes her device (Prentke Romich) is having to learn more about how to program and use it.  I will try to update about her progress regularly.  It's so exciting to see her learning and communicating with words.
***By the way, in the video she just meant to say "I want cookie please".  She accidentally hit an area on the device after cookie that said "dough".  This is part of the device's word prediction feature which will be helpful as she learns to make more complex sentences. 

Finally -- her own Vantage Lite!

After a year and a half of waiting, Medicaid finally approved Natalie's AAC, the Vantage Lite, and she received it last week.  There will be many more videos to come showing how well she is already using it, but for now, here is one that Cook took last week of Natalie enjoying her new Talker. 

Denied!

On April 20, I attended a state hearing appealing the second medicaid denial of her AAC device (the Vantage Lite communication device I've talked about in earlier posts). The hearing itself was an odd experience. It was all done over the phone as a teleconference. It was myself (and my mom), the Hearings Officer, 2 representatives from medicaid, and Natalie's former SLP Cheryl. I was not impressed with the Medicaid representatives - their attitude was on the nasty side. Cheryl did a GREAT job justifying why the Vantage Lite IS the most appropriate device for Natalie's communication needs.
Unfortunately, I received a letter in the mail on Thursday saying that the Hearing Officer upheld medicaid's denial decision. The reason? While Medicaid agreed that Natalie does need a communication device, they have determined that a "lower cost alternative" would meet her basic communication needs as they now stand. The problem is that according to her current and past SLP, Natalie would likely outgrow the device they are recommending within a year (if she hasn't already) and Medicaid only pays for a SGD (speech generating device) once every FIVE years! So she will have to use the one that they approve now until she is almost 10. Imagine how much her communication needs will change over that time period. I am so frustrated!
So, what are the options? I made some calls on Friday but have not heard back from several people I contacted so I am not positive yet. I'm pretty sure that I can appeal this denial and/or continue to submit documentation trying to get Medicaid to approve the Vantage Lite and I will probably do this. However, I hate so waste even more time that Natalie could be learning to communicate. She has an ipad with proloquo2go software on it but this is just not working that effectively for her due to access issues (touch screen sensitivity and motor skill problems make it frustrating for her to use the ipad very effectively right now). I can try to raise the money myself to just purchase the Vantage Lite but the total cost is $7,900 so that would not be an easy task!
Here's a video of Natalie's reaction when I told her that she would not be getting the Vantage Lite yet:




Ok, not really. This video is from February on a day when Natalie was not in a good mood. I think that it shows how important a communication device is for Natalie. She gets frustrated, like all 4 year olds do at times. The difference is that she cannot TELL anyone why she is sad/mad/hurt. It's frustrating for me but I can only imagine that it is 100x more frustrating for her to not have a "voice".

On a lighter note, she has been so funny lately with her letters. I can tell that she is so proud to be able to show me what she knows. She likes to get the "M" off the refrigerator and bring it to me. She does this at random times during the day, I think because when we practice her letters I always say "give me the M for Mommy".

The amazing Ipad

Check out this link to a Wall Street Journal article about children with special needs using the Ipad for communication. Since Natalie's communication device just got denied by insurance and medicaid, an Ipad could be in Natalie's future. (Although I will be appealing the medicaid denial).

Teddy Bear Picnic

AAC Trial

Natalie is currently in her third week trialing the Vantage Lite, an AAC (Augmentative & Alternative Communication) device from an awesome company called Prentke Romich. These type of sophisticated communication devices have opened up the world of communication to many children and adults with disabilities who otherwise would not be able to, or would have significant difficulty, interacting with others. I understand they are widely used for children with neurological conditions such as CP but also for children with Autism and a variety of other disabilities which negatively affect the ability to communicate verbally. Normally, if the trial goes well and everyone agrees that there will be significant benefit from its use, we will place an order for Natalie to get her own! In case some were wondering, the fact that we will likely be going this route does not mean that we have in any way given up on Natalie being able to communicate verbally. Research has shown that AAC devices actually facilitate speech skills and many kids start speaking more, and more clearly, after using an AAC. I am very happy to report that Natalie has very quickly picked up on how to use her device to communicate some basic wants and needs. It was exciting to see that she seemed to really "get it" from the very first day. Below are some short videos of Natalie using the Vantage Lite during meal times. Just a note that this is a very complex device and the way we are using it now is in just the most basic way. See Fighting Monsters with Rubber Swords to learn about Schuyler, an older child who uses this same AAC device in a much more sophisticated way. This will illustrate the possibilities this device will give Natalie over the next several years.



**Please excuse Natalie's crazy hair in the last video. Someone who I won't name but who babysits for Natalie 2 days a week must not have felt the need to comb Natalie's hair that day. I suppose it makes sense knowing that this same person did not willingly brush her own hair until she was about, oh, maybe 10 years old!