March 21, 2009

Of Loopholes and Boxes of Pink

A week from now, a box should be arriving from Wooster, Ohio. Inside that box will be something that I wasn't sure we'd see any time soon, and it will be arriving under very different circumstances, in a differently life even, than the last box we received from Wooster.

The box will contain Schuyler's new Big Box of Words.

When I mentioned the fact that Schuyler had been approved for funding for the device, I got a lot of questions about it. I thought it would be helpful for some of you if I devoted an entire post to this.

First of all, the device itself. It is the Vantage Lite, built by the Prentke Romich Company, and it is basically the next generation of what Schuyler has now. It will communicate the same way, using PRC's Unity® language system, but with a lot of new features and capabilities. This is what I'm reading (and possibly getting some of this wrong, sorry if my information turns out to be less than accurate):

  • The Vantage Lite adds a vocabulary setting -- a 60-key sequence -- to bridge the gap between the simple 45-key setting that Schuyler started on and the 84-key she uses now. Not a benefit for Schuyler, who has been using the 84-key setting for most of her time with the BBoW, but I think it's a good transitional step. That change was a big one and took a while for Schuyler to become comfortable with.
  • It has 64k graphic capability, up from 256 colors on Schuyler's device.
  • It has something new called Visual Scenes, which allows the user to show large pictures superimposed on the key layout. Say Schuyler has a photo of her family that she wants to display. In Visual Scenes, that photo can take up the better part of the screen, with perhaps some buttons beside it that can be programmed either with words or phrases describing the scene or giving further information. Additionally, the key spaces under the photo can be programmed to identify the subjects of the photo and speak them. Click on my fat head in the photo, and the device will say "Daddy". Think of how tagging works in Facebook and you'll get a pretty good idea of how this works. Now the device is more than just a way to speak. It can become an important digital assistant. The possibilities for school alone are pretty amazing. For example, Schuyler can now give oral reports with multimedia in a way that would have been impossible before.
  • Vocabulary Builder now allows AAC professionals (and busybody, know-it-all parents) to teach vocabulary in smaller, more manageable pieces. A text file can be imported into the Vantage Lite with a vocabulary limited to whatever the user requires or can handle at that stage. Vocabulary Builder matches that list against its own stored vocabulary, and any words not on that list are masked from the available vocabulary. This simplifies the search task and reinforces the motor patterning for accessing those target words. Again, not for Schuyler, but it might have made the early days easier for her. I can see how it would be a valuable tool, and it addresses some criticisms of the PRC devices that claim it can be overwhelming and difficult to learn. (I don't agree with those criticisms, but I understand where they come from.)
  • There's a brighter display with better backlighting. (Might Schuyler finally be able to use her device outside, in the sunlight? Perhaps!)
  • It now has something called Simple Toolbox, which is an alternative to the sometimes daunting Full Toolbox. Selecting this option gives you fewer, more often used menus and functions. (I suspect this is an option mostly utilized by parents.)
  • The Vantage Lite has built-in Bluetooth. This could be a very big deal. I have to confess now that I apparently suffered some sort of head injury at some point that turned the part of my brain that should understand Bluetooth into a soft, useless puddle in my head. So I can't explain much about it yet.
  • The device itself has been redesigned to be more durable and also much more portable.

I'm also pleased to report that it looks much less... medical, I guess. There's been a growing industry-wide recognition of social stigma as probably the greatest barrier to a lot of kids, many of whom resist AAC technology because they feel it calls attention to their disability. That has certainly been the case with Schuyler on some level from time to time. The simple act of making it look more like a kid's other digital devices (including making it available in different colors) might just go a long way towards making it a more welcome part of their life.

Do you want Schuyler to fall in love with her speech device? Make it pink.



Now, about the funding.

The state of Texas has something called the Specialized Telecommunications Assistance Program, or STAP. It provides financial assistance to people with disabilities to allow them to purchase telecommunications devices and services that allow them to use telephone networks to communicate. Qualified state residents can apply for these funds once every five years. (It was around back when we were looking to get Schuyler's existing device, but the waiting period at that time was six months or more. It's now down to a few weeks. Fewer than three for us, actually.)

So yeah. That doesn't sound like it really applies to Schuyler, does it? Well, the truth is, STAP isn't actually intended to fund AAC devices. It's supposed to be used to buy phone systems for people who have difficulty using the phone. The loophole that allows AAC funding is simple. How can you use the phone if you can't talk? Many AAC devices have been adapted for use with telephone equipment, and those devices are available through STAP, or its equivalent, in many states. And that adaptation is as simple as having an external speaker jack. If you can plug in a speaker, then you can plug in a phone adapter. And if you can do that, suddenly you qualify for STAP.

Every state states should have STAP or a similar program (check with your state's Public Utilities Commission), but apparently many of them won't fund AAC devices, or will only buy very limited equipment. Texas got it right for kids like Schuyler, but they did it by accident, I guess.

And that, my friends, is how every so often, the parents of broken children win. We can't fight the system head on. We look for holes in the Armor of No, and we stab with our rubber swords just as hard as we can.

21 comments:

Controversy said...

Outstanding. And I hope that rubber sword rips that loophole open so wide that it's no longer a loophole, it's just a standard regulation.

Anonymous said...

from the great state of ohio, i hope schuyler enjoys her new Big Box of Words :) OH-IO. And as a woman, I too think that it should come in pink.

Karen said...

That's awesome. Except that I am now hacked that nobody told us about this program. We've been fighting the insurance company over payment for 6 months now. I think we've won, but we also don't have the device yet either. I am saving this information for a future date. You never know...

Niksmom said...

Yay for the new device's speedy arrival and for pink, too! :-)

I had no idea about such loopholes and now must go investigate what might be possible in my little state of "Dela-where?"

I love that you not only champion for Scuyler but that you share your knowledge so freely with us. Thanks.

Anonymous said...

I can't wait to see her with that new pink box of words. :)

Anonymous said...

Hi. We have been trying to get our insurance company to approve a Vantage Lite for our daughter, also. We just finished writing 7 appeal letters (myself, the pediatrician, SLP teacher, 5th grade teacher, 2 aides, and her SLP) and sending them to the company and are waiting for an answer. The reason we were given for the denial was that such devices are not allowed unless the person has had his/her lyrnyx removed! I had to laugh. She has a Springboard (a simpler device, also by PRC, but uses a Vantage at times.
I find it amusing that insurance companies will pay for wheelchairs for people with legs that don't work, cochlear implants, or hearing aids for ears that don't work, or glasses for eyes that don't work, but for some reason, communication is not deemed important enough to augment.
Congratulations on your new, pink, BBOW!
Enjoy!

Regina said...

We are just starting the process of getting my six year old daughter a device to help her communicate. Thank you for sharing and for ideas.

Christopher said...

How cool for Schuyler. The gadget geek in me wishes I could see her open the box when it arrives. My wife says that I order gadgets just so I can take them out of the box that first time and marvel at there coolness.

Wish it wasn't a loophole but better a loophole than not having the device.

MFA Mama said...

This is fantastic! I'm so happy for your entire family (but mostly for Schuyler)! And it'll be PINK? WIN! Perhaps this will help her be more willing to use the BBOW at her after-school program? One can hope. I think making the thing more visually appealing and less "medical" is HUGE and something the companies ought to put as much into as the other features--how great would it be if the thing was SO VERY COOL that Schuyler was PROUD to show her friends? I'll be smiling all day about this :)

Unknown said...

Congrats to Schuyler!

And I'm with you on the Bluetooth thing. I know that it's really cool for reasons that other people understand, but not me. Sigh.

Anonymous said...

"Armor of No" is my new favorite expression. You really are a good writer... You make me laugh, cry, understand better.

Thank you

Anonymous said...

I can't wait to see the pink BBoW. And I think Armor of No might be one of my favorite new phrases for dealing with insurance companies!

Claire said...

Yay! Shiny! Pinkness!

I will try and explain blue tooth.

walkie talkies that send free pictures, files and sounds.

A free short distance text message or picture or sound.

A very small short distance email.

A way to turn your mobile phone into a remote control for a power point presentation.

Congratulations of your box of pink!

Robert Hudson said...

I think I get the basics of Bluetooth, but I'm not sure how she can use it. I assume she'll be able to access her computer with it, for example, and when she gets a phone one day, but the details are elusive to me.

Anonymous said...

I'm also from Ohio, actually live very close to Wooster and am thrilled that Schuyler is getting the new BBOW.
Honestly, I never really knew what
what PRC did until I read your posting about them. Good on them for awesome technology and congrats to your lovely family!
---Nix

Agg said...

I suppose that one can use Bluetooth to transfer the sound directly from the BBOW to the phone, like with a bluetooth headset with microphone.
Additionally, the BBOW speakers could be turned off at the moment and nobody would be able to eavesdrop on Schuyler's phone conversations.
The computer part is pretty obvious. The BBOW can be connected via Bluetooth to the computer and be used as an input device for writing emails or anything. Also for synchronisation, updates, etc - just like any PDA.

I am not a professional in communication technology, just a geek who uses Bluetooth for some devices and has some idea about what it can do (namely wireless, short-range communication, just like a cord). The above is possible if the BBOW software permits it. I don't see why not.

Anonymous said...

Hey, don't forget to mention the handle! I taught some kids who were using the new Springboard Lite that has the same design principles and the handle is so awesome! Such a simple and useful feature!

Nice review of the features. I am so happy for Schuyler! That is awesome.

Jim Howard said...

Like the other commenters, I think that the new box's bluetooth could be used to let the user make phone calls using the box.

Anonymous said...

Thank you for your update on PRC. However, have you ever had the incident where your box of words stops working and you send it into PRC to get fixed? Its a nightmare. My non-verbal son's talker stopped working and we sent it in to be fixed and the replacement "talker" kept shutting off and the frustration that causes and PRC really didn't seem to understand about people with special needs and that this is what they rely on daily minute by minute to talk. My rep did not return my frustrated calls and tech service told me "that he didn't have to explain anything to me". Thankfully Tim in Customer Service understood my 6 year olds need and he went above and beyond the call of duty to get our box of words returned to us. Mr. Rummel-Hudson, I to have the dream of getting the newer version and actually having a "carrying handle" but what happens the next time the machine breaks and we have the "platinum warranty" but no one hears our frustration at PRC???
Thank you for all your blogs. You are such a special family! What a gift our special children are! Please keep doing what you are doing...you are amazing, YOU are the reason she is such a joy to all who meet her. I hope to be at your book signing in Austin in April. Thank you!!!!!!

Robert Hudson said...

I've actually had the opposite experience with PRC and their service department. They've always been extremely quick to do repairs and have been very responsive to our issues.

When the device was new, there was an issue with the touch screen that was pretty persistent. PRC not only replaced the whole device with a new one, but the local rep also provided a loaner until the new one was ready.

This was before we moved to Plano, so it was before both Schuyler's AAC classroom and my fancy pantsedness.

Loves Pickles said...

ROCK!