Friday, October 22, 2010


I discovered recently that my work colleagues have a nickname for me: iJeneva.  And, yes, about four or five years ago I became a Mac convert.  And, sometimes, I proselytize.

Here's what I've been saying about the iPad (and others, too, I'm sure): this device has the potential to radically reconfigure the market for augmentative communication devices. For those of you who live outside Disability Land, these devices range from mechanical push-button recording devices to increasingly computerized devices with touch screens.  Each of these devices is engineered for a range of physical and cognitive disabilities.  The Big Mac button costs over $100 now, and enables the user to 'speak' a single, brief recorded message at a time by lightly depressing a large, brightly colored button.  Want to say something else?  Record over it.  The CheapTalk series range from, I think, about $150-300, and allow users to choose among 4-8 smaller buttons on which PCS (picture communication symbols) can be affixed.  The more expensive ones have 'levels' that allow multiple recordings for each button.  The SuperTalker has black plastic grid layovers for a touch-audio surface, and, using the same multiple recording levels technology, allows storage of different communications arrays.  Price?  About $500.

The catch with all of these?  You use a computer software program called BoardMaker (price: $350) on a regular computer to design paper layouts of PCS tiles, print them, cut them down to size, and then switch them in and out of these devices when you want your child to be able to say something.  Of course, if you're out and about and the circumstances demand a different picture array--oh, well.  All of these interventions are, of course, permutations of the tape recorder.  Useful?  Yes.  Flexible?  Well, sort of, maybe, no.

The Dynavox is the crown prince of augmentative tech devices: a computerized, programmable touchscreen device that uses the Mayer-Johnson/BoardMaker symbol library, which is integrated into the software.  Cost?  About $8,000 to $10,000.  Or 8 to 10 times the cost of actually buying a Mac laptop, which can, ahem, run a gazillion programs, not just one set of software.  But take note, iPhone and iPad devotees, touchscreen technology was first broadly used and implemented in disability software and devices.

Not every child with disabilities can use every device.  In fact, Robert has had difficulty using any of these (and there are more, believe me, more).  Forgive me, but I'm in self-promotional overdrive--I recently published a lyric essay about the intersections of speech technology, language, and, well, parental love, which can be read here.

What is it like to be a parent of a child with special needs, a non-verbal child, and want somehow, somehow, to create the interface that will allow your child to speak, even if it's only to choose among a pre-fab set of things he or she might want to say?  A long trial by fire.  No, a quest for the magic ring.  No, it's like walking down 5th Avenue in New York, window shopping, all the beautiful things you cannot have arrayed behind glass.  And you'd like to go inside and try something on, but the impossibly thin, dour-faced clerks with the odd haircuts say they don't let you try things on for free.

The school system does own many of these devices, and your child can experiment with them, but the special ed teachers are the gatekeepers.  And the school still owns the devices.  Insurance stopped paying for these a long time ago--they're not "medically necessary," as, apparently, an inability to speak is not a medical condition that warrants attention.

And, anyway, at home, I've learned, I can wear myself into the ground trying to figure out how to make a system work with a child whose physical abilities fluctuate by the day, week, and month.

And therein lies the problem.  Kids with disabilities need access to all sorts of devices, all sorts of interfaces, in order to figure out how to communicate.  And the expense of these things is a barrier to the education of these children altogether.  States complain constantly about the expense involved in implementing the Individuals with Disabilities Education Act (IDEA), which is the federal mandate that guarantees a free and appropriate education for children with disabilities.  At the present time, several states want the U.S. Department of Education to provide them with a waiver on special education spending, which they claim is a hardship.

And the gifted and talented advocacy groups do their best to advocate for the G&T population at the expense of children with disabilities, having found an argument that resonates with people: it's expensive to educate the disabled, and wouldn't that money be better spent educating our smartest kids?  Zero sum game, the policymaker's hobby horse.

Why is it so expensive?  It's the added staff, the aides, the physical, occupational and speech therapies.  But it's also the equipment.  And the augmentative technology industry has been lending a helping hand to critics of special education by pricing their products to reflect the inflated prices charged institutions and insurance companies, rather than pricing these items for the budgets of parents and families, the end users.  So the control for helping our kids learn to communicate is, effectively, taken right out of our hands.  And our ability to defend our children's rights to an education is compromised by the unnecessarily high price of helping them interact with their peers and participate in a classroom.

This morning, reading the NY Times on my iPad, getting sucked into the black-bordered rectangle of the screen, I decided, as a random procrastination, to browse the App Store.  Much to my surprise, Apple's App Store, today, had a featured section on Special Education.  In it were a couple of apps of which I was aware, and several of which I was not.  For parents whose children can use the Dynavox, there's Proloquo2Go, an $189 app that mimics the protocols of the Dynavox, but at about $700 (including the cost of the iPad).  For parents whose children can use the Big Mac and the Step by Step, there are the TapSpeak Button and TapSpeak Sequences, priced at $9.99 and $29.99, respectively.  Soon to come, TapSpeak Choice, which will mimic the CheapTalk and the SuperTalker and similar devices.  Mayer-Johnson has licensed the use of its PCS library for these apps at a cost of $24.99.  And, unlike the other proprietary devices, these apps have storage capacity for messages and the ability to update and interchange pictures and PCS tiles, so that you can carry your library with you, as well as easily update it on the go.

The best part about these applications is that the iPad acts as a universal adaptor and platform for augmentative tech, meaning that the $499 price for the iPad allows it to turn into any number of devices. If you have a child with varying muscular abilities, that's really a god-send.  And it makes experimentation easier for everyone because the price-point drops to something affordable.  And, when the kids are bored at the supermarket, hey, you can screen a YouTube video.

For many years, I've been annoyed with Bill Gates and the Gates Foundation.  I remember his early PSAs for the foundation, which suggested that all kids could dream, all kids could be someone.  But no kids in wheelchairs, no kids with disabilities appeared in those ads.  And the Gates Foundation has never had a program to serve the needs of children with disabilities--other worthy populations receive their help, but the King of Technology, the man who can summon some of the best tech people on the planet with a simple snap of his fingers, is too busy to help my kid and his peers.  And the motto of the Gates Foundation is: "All lives have equal value."

Steve Jobs is no Mother Theresa.  He's a rapacious capitalist.  But at least he understands that the disabled, their families, and their caregivers are consumers, too.


Elizabeth said...

Oh, alleluia. I'm dying to get an ipad and have Sophie try it. Our history with augmentative communication is bleak, at best. I'm still determined, god knows why, to find some way for her to speak and be known.

I've always condemned Bill Gates for not funding vaccine safety research to go along with his world vaccine mission.

Anonymous said...

This makes me dream a little, too--for so many years never hearing my son's voice except once in ever-so-great a while, when the ability to express emotion with words just comes to him--if only he could say more. Thank you for posting this, and your blog.