Maya Nieder is four years old. She is unable to speak. Maya uses an iPad app called Speak for Yourself (SfY) to communicate. Maya's mother, Dana Nieder, has described the usefulness and effectiveness of the app:
Maya’s progress in using the app to communicate has been staggering. In my original post I imagined a future in which I could hear Maya “speak” in phrases and share her thoughts . . . . Now, only weeks later, we are living that future. She politely makes requests, tapping out “I want cookie please.” She makes jokes, like looking out the window at the bright sunshine and tapping “today rain” and laughing (what can I say, 4 year olds don’t tell the best jokes). And two days ago she looked at my husband as he walked by and tapped “Daddy, I love you.”
Maya can speak to us, clearly, for the first time in her life. We are hanging on her every word. We’ve learned that she loves talking about the days of the week, is weirdly interested in the weather, and likes to pretend that her toy princesses are driving the bus to school (sometimes) and to work (other times). This app has not only allowed her to communicate her needs, but her thoughts as well. It’s given us the gift of getting to know our child on a totally different level.
Apple recently removed the Speak for Yourself app from the iTunes store because of an unresolved software patent dispute between: (1) the two speech pathologists who developed SfY, Heidi LoStracco, MS, CCC-SLP and Renee Collender, MA, CCC-SLP; and (2) Prentke Romich Company (PRC) and its partner Semantic Compaction Systems (SCS), the patent holders and makers of stand-alone, expensive augmentative and alternative communication (AAC) devices. Since the app was designed exclusively for the iPad, the delisting means it has disappeared entirely and its coders can't issue updates to users.
As a result, Dana recently explained, "Maya [is] poised to become a very real, very human, and very adorable casualty of patent law."
At the moment, we still have the app, securely loaded into her iPad and present in my iTunes account, and Maya remains blissfully unaware that anything has changed. Dave and I, however, know better. We are now shadowed by a huge, impending threat. With the removal of Speak for Yourself from the iTunes store, the SfY team has lost the ability to send out updates or repairs to the people who are currently using the app. At this point, an update from Apple to the iPad's operating system (which gets updated semi-regularly) could render SfY useless (because if the new operating system was to be incompatible with the code for SfY, there would be no way for the team to reconfigure the app to make it compatible with the new OS and send out the updated version). Our app could stop working, and Maya would be left unable to speak, and no one would be able to help us.
And there’s another threat, too, perhaps a more sinister one. What would happen if PRC/SCS contacted Apple and asked them to remotely delete the copies of Speak for Yourself that were already purchased, citing that the app was (allegedly) illegally infringing upon their patents, and stating that they wanted it entirely removed from existence? Prior to last week, I would have (naively) thought that such an aggressive move, harmful to hundreds of innocent nonverbal children, would have been unfathomable. Now, it appears to be a real concern. Prior to last week I would have (naively) thought that even if such a request was made, Apple would never comply without a court injunction forcing them to do so. Now, it appears that they very well might.
We can do something about this. We can protect Maya's right to speak.
The Change.org petition is: Let Maya Speak For Herself
To contact Apple:
Telephone: (408) 996-1010
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The most important thing right now is to protect Maya. Sign the Petition. Share. Tweet. E-mail. Call.
But it is simply not possible to avoid the larger, looming issues concerning software patents, legacy AAC systems, Apple's dictatorial choke-hold on an increasingly important mode of software distribution, and the cost of health-care. As the blog Cry, Beloved Country succinctly explained:
The big guns in the AAC industry are trying to kill Speak for Yourself. Semantic Compaction Systems, Inc. (SCS) and Prentke Romich Company (PRC) allege that the two speech therapists, Heidi LoStracco and Renee Collender, infringed on their patented keyboard technology.Similarly, Time magazine's Techland blog observes:
And maybe they did. I don’t know.
But what’s striking is the money involved.
Speech-impaired customers have been asking PRC for an iPad app for quite some time, according to Dana Nieder, Maya’s mom. But they haven’t seemed interested.
And why would they be? The AACs they sell run about $7,500. Extended warranties on the high-maintenance devices run another $684 to $888 a year.
Speak for Yourself costs 300 bucks.
Why create a $300 app if you can keep a monopoly and sell devices that run eight to nine grand instead?
At $299.99, Speak for Yourself is relatively cheap compared to other AAC systems. To put things in perspective, devices from industry leaders such as Prentke Romich Company can cost nearly $8,000. Even when you factor in the cost of a new $500 iPad, Speak for Yourself is the much cheaper option. Unfortunately for Maya, it might not be around for much longer, thanks to a lawsuit filed by Prentke Romich and its partner Semantic Compaction Systems over patent infringement.Digital trends explored the policy implications:
According to the lawsuit, Speak for Yourself infringed on “patented technology for dynamic keyboards and methods for dynamically redefining keys on a keyboard in the context of Augmentative and Alternative Communication (AAC) systems,” based on a patent issued in 1995 — 15 years before the release of the first iPad.
The cost of a PRC device starts at an astounding $7,000 per unit, and can soar upward of $10,000. Luckily, Medicaid covers all or most of the cost, for those who are eligible. Even for those who are, that option forces caregivers to wait for the finalization of lengthy paperwork. The other option, as a PRC customer service representative explained to us, is to seek coverage from your insurance company. But comprehensive medical insurance is a luxury many living in the United States cannot afford, and even those who have it run the risk of rejection.
Dana and her husband were ineligible for Medicaid, and their insurance company wasn’t the most cooperative.
Having said that, it is important to recognize that the Nieder family does not object to the cost of a stand-alone system. Their sole concern is which system works best for Maya. As Dana explained:
What would happen if we lost SfY? I have no idea. As I’ve explained before, we have tried other communication apps and didn’t find any that were a good match for Maya. Interestingly, we also carefully considered purchasing a communication device from PRC, and met with one of their representatives in November, nine weeks before a post on my Facebook wall introduced me to SfY (and seven weeks before it even existed in the iTunes store). We examined PRC’s devices and were disappointed to see that they weren’t a good fit for Maya. For us, this wasn’t an issue of an expensive device versus a “cheap” app. This was an issue of an ineffective device (for Maya) versus an app that she understood and embraced immediately. The only app, the only system, that she immediately adopted as her own way of communicating."According to Dana, other applications are not as comprehensive, not intuitive, and worse yet, overly complicated."
This app is her only voice.
According to Dana, the sheer bulk and weight of a PRC device could pose risks for Maya, [who] has major balance issues.
What really set Speak For Yourself apart from PRC and competing language systems for Dana and Maya was SFY’s superior picture language, grammatical modeling and user experience. Other people, Dana pointed out, may prefer AAC apps including Proloquo2Go and TouchChat, or may even find PRC’s products to be their AAC device of choice. The biggest difference for Maya, Dana explains, comes down to consistency. “On SFY, the words all stay in the same spot, forever. Whether Maya has access to 2 words or 200 words, the word “waffle” will always take the same two taps in the two same spots. With other devices, things move.”
Articles in the US
iPad App That Helpts a Little Girl Speak Pulled From App Store (from TIME.com)
Speak for Yourself, iPad App Giving Voiceless A Voice, Exits App Store (from huffingtonpost.com)
App Store enigma: the patent holder, the developer, and the voiceless child (from arstechnica.com)
App To Help A Three Year Old Girl Talk Pulled From App Store (from cultofmac.com)
Apple Steps Into Patent Fight To Unnecessarily Silence A Little Girl (from techdirt.com)
Apple Pulls App That Gives Disabled Children The Chance To Speak (from appadvice.com)
Taking More than Candy from a Baby (from futureoftheinternet.org)
iPad app removal could leave family unable to communicate with daughter (from neowin.net)
Assistive Speech app for iOS casualty of patent wars? (from electronista.com)
Speech app pulled from App Store that gave 4 year old a voice for the first time (from imore.com)
Parents, Storming the Gates (from specialchildren.about.com)
Dispute Erupts As iPad App For Nonverbal Is Pulled (from disabilityscoop.com)
Apple silences mute kids' speech app in patent blowup (from theregister.co.uk, UK)
Apple conspires to stop mute child from communicating (from techeye.net, UK?)
'My daughter can't speak without it': Furious mother launches campaign after Apple pulls life-changing iPad speech app from store (from dailymail.co.uk, UK)
Dutch article (from ipadclub.nl)
French article (from framablog.com)
Google translate isn't telling me what language this article is in (maybe Portuguese?) (from technologia.uol.com.br)
From the Blogosphere
A heartbreaking look at software patents (from blogs.gnome.org)
I love you Daddy (from teamaidan.wordpress.com)
Maya's story: Everyone deserves a voice (from crybelovedcountry.com)
My daughter cannot speak without this app (from third-bit.com)
Online Discussions (more technical in nature)
Discussion on Slashdot (over 500 comments)
Discussion on Hacker News (over 300 comments)
Discussions on Reddit (multiple threads)