Goodbye ECO....for now

Today is a big day.

We ship off Daniel's ECO14 back to PRC

They will then modify his original AAC device to be able to handle the ECOpoint.

I am so excited, I don't think I'll be able to wait the next few weeks for the modifications and upgrade. I want it NOW!! Let me rephrase that....I want it last year!!!

But I cannot wait to post more of these types of videos like this one.

And one of my all time best feeling ones here.  You can find many more throughout the blog but I think these are among my favs.

I cannot wait, as I am sure Daniel cannot wait to voice his opinion.  Hopefully it comes back quickly.  I want him to be rockin' it for the beginning of the school next year so he can blow the pants off everyone.

So PRC People who have never let us down yet.....we are sitting at our front door starting next Monday biting our nails and waiting patiently! :)

This is the face he will be making when the package arrives...He gets so excited when we get packages...he knows they are ALWAYS for him!

Then get ready cause he's got 5 years worth of stuff to be blabbing about!

By the way PRC devices are very cool, make sure you check out how they helped out this little girl who has the exact same thing as Daniel but on a different degree.  She was our inspiration along the way.  Fighting Monsters with Rubber Swords.  Awesome blog, also has a wonderful book out there.  The dad is pretty cool too, I find him hilariously funny.  He wrote about Daniel back in the day when we met him in cyberspace.

So on a side note, always check all your options for AAC devices, they are not all the same! Remember to always find out about the customer support/reps too, because you will need help and if they aren't good...the device isn't going to help you much either.  By the way I can hook you up with a great speech path and PRC rep.  I believe you will find along the way too the I have mentioned that they rock too (almost as much as Daniel!)

Wonders Will Never Cease...

After over a year of fighting the AAC battle with insurance we have WON!  I can't say THANK YOU enough to our SLP, and the others who helped along the way!!

Can I hear a  Woot Woot?

If you haven't followed or if perhaps I didn't post about it (very likely lately) - we have been trying to get Daniel the EyePoint for his ECO AAC device.  The upgrade came out within a couple months of us getting his original ECO.  Immediately we started the process after seeing Daniel try it out when a rep came to speech one day (see video here).

Well of course the process is usually a few months, but then you have the cases lately with the economy and state cuts they try to make things even harder for you.  So we got "requests" for more documentation showing the Daniel was able to understand what was being asked of him, when his language skills were.  You can read more about that here.  We went through this "request for more documentation" multiple times, which of course gives the insurance company another 45+ days to "review" the new information, or "review" the data that was already in the report sent to them in the first place.  Just a big ol' pile of poop that they serve you to get you to hopefully give up and go away.  Well, they obviously didn't realize that we don't go away. So we keep giving them what they asked for and more.  We had letters from doctors, test results, videos, just about anything you could think of.  Then in October of last year we got the final "DENIED" letter.  

DENIED??  Are you kidding me?  So I wrote in for an appeal (first time I'd ever done one), which had to be done within 30 days of the denial date. My question is here is why do they get to take forever to do it but I only have 30 days?  Anyways, I sent in the paperwork and waited to hear some thing back.  In December I still hadn't heard anything so I called them.  Odd, they couldn't find any paperwork saying that we appealed. 

After a few not so kind words on my part, I immediately faxed to them the original request.  After a long time of getting the run around and repeated calls from me (almost weekly) to check the progress of our appeal, we were pulled to the top of the pile and a date was set.  That office had to be sick of me calling that is all I can think of, or that when I called I would say "Happy Monday!" and end with "Ok I'll talk to you later this week to see how things are going!"

So we had our date this past Monday.  Had to meet at our SLP's office which is normally 25 minutes away but of course we had a blizzard.  YEP a mini blizzard in mid April. Not a good sign.  Took us a little over an hour to get there.  The "mediator" read one letter that our neurologist had sent to them the Friday prior (which can I add was also in the original paperwork that was sent in over a year ago, just re-dated but had the same information in it), and the frickin' insurance lady says "We retract our denial, and approval the upgrade to his device"  

MONTHS AND MONTHS OF FIGHTING, FILLING OUT PAPERWORK, TESTING, STRESSING, SPEECH THERAPIST BUSTING HER ASS AND JUMPING THROUGH HOOPS TO GET WHAT SHE KNOWS DANIEL NEEDS, and you all of a sudden decide to retract?!?!?!

To say that we all sat there with a dumbfounded look on our face would be an understatement.  But oh well - the end result, we got what we wanted.  What I learned; they will keep requesting and denying and hoping that you will go away, just forget about it.  What I hope they learned - Don't mess with Pat (SLP) or Daniel's parents because we DON'T give up!

Now, if you'll excuse us - we are still doing our happy dancin'

Inspiration

Although Daniel does not have Autism, he does have other hurdles to leap that are similar. When some people see Daniel, they first judge him because he is in a wheelchair, then because he is non-verbal. Many jump to the conclusion that he is mentally handicapped. In this case - they are judging him for his outward appearance. Many people won't give him to time to answer, or they don't talk "to him". They assume because he isn't looking at them, that he isn't listening.

I think they are wrong.

Watch this video. Sad but people judged this girl too and look where she is now.

Now, go over and check out her website "Carly's Voice", check around on there and see how smart this girl is.  Heck, I would have to say she has some very profound things to say that we can learn from.

Then there is Chris, who is from Michigan also.  I have had the privilege to "chat" with him a few times on FB.  What an awesome guy.  Very willing to help me get the AAC system for Daniel, and to hook me up with other people who can help.  Chris is a graduate from college, knows a couple of languages, and accesses his AAC device with his feet.  He also drives his power chair with his feet!

Here is another reason NOT to judge a book by its cover...

There are many of these stories I am sure that are out there, about people with disabilities being judged.  And it makes me so sad that there are probably thousands of people out there with disabilities that don't have the opportunity to show what is stuck inside their bodies.  I know people are probably sick of hearing me say this, but I'm going to say it again.  I can look in Daniel's eyes, and I can see he is there, he is understanding me, he KNOWS.  He is just stuck in a body that isn't working for him.  But his mind, its whole, its there and its working.

I wish one day that people who look beyond the wheelchair, or the uncontrolled body movements and see what is really on the inside.  Don't talk to him like he doesn't  understand you.  Just be accepting, that's all he wants.  He just wants to be like every other little boy.

How Can You Help..

But to fall in love with his kid?

Kid loves his arts and crafts time!  (Wonder where he gets that from!?)

His serious look, but still always bright eyed

Uncontrolled laughter equals loss of body control - Runs in the family!

Trial ECO EyePoint

Been a while - in case you didn't know, we were at a private school in Grand Rapids. It rocked! More on that later (yes I hope to get back to the blogging)

While there our PRC guy hooked us up with the Eco EyePoint so we could try it out for a couple days. Here is a short video of our first day with it. Mind you, this was the first time he had used the eye gaze in over 6 months.

What I am trying to do is document that Daniel has an understanding of what he is doing with his eyes, that he can make selections, he can follow directions, and that he needs to get approval for the eye gaze to be successful in communicating because he does not have great control over his arms and hands. It would be an imperative piece of equipment for him to have for his education.
(Can you tell we are in the process of an appeal with insurance?)

Excuse the quality of the video, part of it was done with my phone and then I tried to get another angle with the camera...you'll see I wasn't successful with that little trick!

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