November 3, 2014

Making Our Own Ice

I want to discuss something very specific to augmentative alternative communication, so my apologies in advance if this isn't part of your world. I specifically want to address the strange, illogical divide in the professional speech technology world between those who use dedicated speech devices and those who find success with consumer electronics products like Apple's iPad. I'm still surprised to watch these conversations unfold online and see how blithely parent advocates and end users are often condescended to. Frankly, it pisses me off, which is why I'm subjecting you to this post.

Some of the discord comes from representatives of the big speech device makers, companies who are responsible for developing the technologies that AAC users have come to depend on but who have been struggling to sustain their business models now that commercial tablets have democratized the AAC process. It's a huge shift, and one that the industry is still trying to figure out. For a specific subset of ambulatory users, suddenly the potential purchase price for a speech language system has dropped from something in the area of eight thousand dollars (plus service agreements that can run around a thousand dollars a year) to under a grand, depending on the communications app and however many whistles and bells you choose for your tablet. So potentially MUCH under a grand.

This change has meant that where once insurance companies and school administrators held final say in the systems purchased, for some that power has now shifted. Parents and end users themselves are suddenly able to make decisions about the technology that allows them to communicate. This democratization comes with pitfalls. It is up to these parents and users to get good information about the language software that is available, and to find resources to determine what AAC needs they or their kids may have. They don't always have the support personnel in place to assist them in making good decisions. There are a lot of very, very bad AAC apps out there, and clearly someone is buying them.

The problem with the dialogue that is taking place in sectors of the AAC community is that it makes some dubious assumptions. Cheaper is inferior. Using commercial tablets amounts to a "one size fits all" approach. More expensive systems mean more solid support. You get what you pay for. And teachers, parents and end users are simply not qualified to make those choices.

Getting good support for systems running on consumer electronics is a real concern. But honestly, it's no different from the situation faced by many schools and families out there with dedicated devices without any meaningful local support. It's an industry-wide problem, and honestly one that can be exacerbated for users of expensive dedicated devices by the prohibitive cost of maintaining service agreements from year to year, as well as issues like loaner devices for repair downtime.

iPads and other consumer tablets aren't a fit for every user or even most users, and I'm not sure I've ever heard anyone make the case that they are. But for users like Schuyler and thousands more like her, these tablets provide possibilities that go beyond a speech prosthesis. To say that we are in one "camp" or another, and that AAC users are divided between dedicated devices and consumer electronics, is a gross oversimplification, and it's not accurate. Schuyler uses an iPad, and it runs the same language software that she used on her dedicated device, back when it was the appropriate choice for her. She not in a camp; she's a hybrid, and I suspect she's the rule, not the exception.

In a piece she wrote for BridgingApps a few months ago, Schuyler had this to say about using her iPad:
I like to use my iPad Mini because it help me with talking and I can looks things up like the the right stuff for school. It makes me as other people. When I used my old speech device, it looks like something wrong with me.


It looks I’m like other people.
One day, I am hopeful that Schuyler will make peace with her differences and even celebrate them. It's something that we encourage in her self-identification and always have. But she's an ambulatory fourteen year-old girl with an invisible disability, attending a public school where she desperately wants to fit in. She's not interested in neurodiversity, because she's in a world where difference is problematic. That's not ideal, but it's her Now World. For Schuyler, the iPad provides a way to fit in a little better, and to participate in a world of technology and online social presence. And she does so using the same language system that she learned on her dedicated speech device.

Her situation mirrors a great many AAC users her age. And for Schuyler and her fellow invisibly disabled peers, the iPad has transformed weird looks into curious questions. She has gone from an effective medical prosthesis that almost miraculously gave her language she never had before but also sometimes stigmatized her to a new powerful tool that also functions as a part of a social narrative in which everyday tech is inclusive.

Inclusive. That's important.

No one is suggesting that this technology will work for everyone. But for speech professionals to suggest that consumer tablet technology like the iPad is somehow universally cheap and inferior isn't just incorrect, although let's be very clear on this point. It is WILDLY incorrect. For many users like Schuyler, systems like the iPad have presented a far superior solution. So no, belittling that technology isn't just untrue. It's demeaning. It often represents an attitude that looks backwards, like a turn-of-the-century ice merchant haughtily dismissing newfangled electric ice makers. It attempts to shame users and parents into abandoning their hard-earned new autonomy. "You'll never be capable of supporting and advocating for yourself," the argument suggests. "You need to step back and let the grownups make those choices."

End users and parents and therapists and teachers, they are becoming experts, out of necessity and because they represent the ground troops. They're making their own ice, not just more cheaply but with greater flexibility and efficiency. Professional support entities now need to make some difficult choices about what the future of their industry looks like, and how to create the business models that keep them employed and relevant, and that keep their clients taken care of. These speech professionals are the natural leaders we look to.

But if there's one thing we've learned over the years, it's how to take the reins in hand when necessary. We're mostly okay with that outcome, too.


Carolk7 said...

Wow, this blog is timely as we are deciding right now what to start using for our 5 year old. We are being recommended Vantage Lite and the speechies making this recommendation have been right on the mark in the past too with their understanding of our lil' trooper and his behaviours. But Proloquo is the app of choice for the South Australian government schools, so which way to go? Is it important enough to advocate for? And being cool with an ipad is pretty important too, as you have noted.

Hope Anne said...

I'm very thankful that our non-verbal daughter (apraxia) is in a private school that understands that what is best for each child for a device, is what should be used! Our daughter did not want a heavy, clunky $8,000 device. She has the exact same technology and program (LAMP Words for Life) on her dedicated IPad complete with protective case and so on--all for right around $1,000. We are so grateful that this technology exists for her!

Unknown said...

When speech therapists are finally obligated to take augmentative communication classes in their graduate programs then they can make comments on this issues you mention. Most of the professionals that recommend devices in this country are horribly inexperienced in the use of assistive technologies and therefore have no idea what the hell they're talking about. The companies that make the dedicated devices could have lowered their prices over the years, but because funding sources are so stupid they have allowed devices to remain 8000 dollars for well over 20 years even though the cost of making one is well 1000 dollars even if you consider r&d over the course of those 20 years. These big companies are also now seeing the linguistically creative AAC professionals develop effective templates that rival their own in the app world. But the real issue has never been whether you use a dedicated device or consumer electonics, the issue has always been how do you effectively set up what you have, individualize it, and then implement it across the settings the person needs to communicate--an issue very few speech and ed professionals have been prepared to address for the past 30 years of AAC device use.

Unknown said...

As an SLP with 20 years experience working specifically in the area of AAC, I would like to offer a clinician's perspective. I have done hundreds of evaluations over the years, always with the same goal. To provide the individual with functional, independent communication. I evaluate the individual, not the technology. A thorough AAC evaluation should include a feature match process. That is, looking at the individual's current communication skills, communication needs, communication environments, access, sensory needs, behavioral issues, literacy skills, and receptive and expressive language. Once the individuals skills and needs are identified, a list of AAC system features can created and a list of potential strategies/devices can been determined. Each strategy or device with matching features should be trialed or at least considered/discussed. When it comes to an iPad based SGD, I also look at the individuals current iPad experience. If a student is currently using an iPad as a reward or for leisure, I very often take this option off the table. I have rarely seen it be successful, unless a second iPad (in a different color case) dedicated to communication is introduced. Many of the individuals I evaluate do not have the capacity to multi-task with their iPads.

iPads lack many features that are crucial for many individuals such as adequate speaker volume and a built in stand. There are cases that will solve these problems but many parents and team members like the cool factor of an iPad, which a large amp case eliminates. And yes, the LAMP app provides access to a modified UNITY language, but an 84- location user are is the only option and the vocabulary is significantly reduced.

I am not opposed to iPad based SGD devices at all. I think they are a much needed option. But they should be considered as such. An option. I get many referrals from parent who ask me to evaluate their child for an iPad. I explain that I can complete an AAC evaluation for their child but that I evaluate individuals and not technology. Often the parents are really looking for the required "paperwork" to get an iPad funded.

So many times I come into a school District that has funded iPads for all their students with AAC needs. All of them have the same AAC app. Sometimes it is appropriate but most if the time both the iPad and the app are poor fits for the students needs. Sometimes years are wasted trying to fit the student to the technology, at the very high cost of communication.

This is such an important topic and I appreciate this blog as well as other venues that allow for discussion and idea sharing.

willwade said...

To make things even more hazy it is possible to make an iPad a dedicated device. You just install the app using Apple Configurator and set it to "Lock to App".. What dedicated means isn't just this though. Its often a case of the support that you get from a traditional dedicated device..