The democratization of communication

How the App Store changed production, distribution, and access to Augmentative and Alternative Communication

Introduction

Communication disorders impact over 75 million people worldwide. In the US alone, they impact over 3 million people. Many of these people have difficulties making themselves understood with their own voice. Until recently, communication devices were very expensive and unaffordable without funding. This meant many people lived without an effective form of communication. 
 
 The introduction of the App Store has transformed the field and led to a democratization of access to communication devices. It provided us and others like us with a platform to share our communication apps with a worldwide market.

Who needs a communication device?

A 2012 study on Americans with disabilities found that over 800,000 people (0.24% of the population) were unable to make themselves understood with their own voice. There are many reasons why somebody may not be able to speak. Speech challenges may be related to congenital conditions, including autism, cerebral palsy, or Down syndrome, or acquired conditions, including traumatic brain injury, neurodegenerative diseases, or strokes.

These people need Augmentative and Alternative Communication (AAC) to be able to communicate. AAC is an umbrella term for a set of tools and strategies that an individual uses to solve everyday communicative challenges. It includes the use of speech, a shared glance, text, gestures, facial expressions, touch, sign language, symbols, pictures, and speech-generating devices (SGDs). SGDs are also known as high-tech AAC or communication devices.

You may have never met somebody who cannot speak. Kids with significant communication challenges often attend special education schools. Adults may not be able to get a job. It is hard for someone who cannot speak to lead an active social live in a society where speech is such a dominant form of communication.

Access to communication devices was limited

Before the App Store, few people had access to a communication device. Getting your hands on one before the App Store was not easy. First you would have to live in a country were appropriate devices are available in your language. Second, you would have to find one of the few Speech Language Pathologists (SLPs) able to do the AAC assessment you would need to get funding. Last, you would have to convince your government or private insurance to fund the SGD costing up to 15 thousand dollars. Many insurance companies and governments were not so keen on funding them. This happens despite the fact that communication is a basic human right and essential to our quality of life. In the US, 2–3% of all individuals had their SGD needs served annually. Those who are not funded have few options left.

Many families made-do with light-tech paper aids. Johanna Frohm recollects making communication materials for her son:

“Prior to the iPad and the internet, a speech therapist helped us locate sources for symbols. Also we ordered catalogs. We photocopied, cut and pasted to make communication books. We used flash cards and a Language Master, too.”

The introduction of the App Store

Until 2009, a few key players dominated the market for communication devices. This included companies such as Dynavox, Tobii Technology, PRC, Saltillo, Toby Churchill, Smartbox, and Saltillo. They specialized in creating dedicated hand-held and tablet computer-sized communication devices. They were sold through a network of sales reps and specialized resellers for thousands of dollars. An estimated 11 to 12 thousand of these devices were sold in the US annually.

We saw an opportunity to democratize access to AAC. Our aim was to deliver AAC on a consumer device at a price within reach of those who did not have access to funding. In April 2009, we released Proloquo2Go, the first full-featured symbol-based AAC app on iOS. Combined with an iPod touch and a speaker case, total cost was below US$ 500.

We were a small company based in Amsterdam, Netherlands. We did not have a network of sales reps or a department to help with funding requests. The App Store provided us with access to a worldwide market. Within a year, we reached 40 countries and sold over 4,000 licenses, of which the vast majority were in the US.

Introduction of Proloquo2Go: mixed responses

The initial responses to the release of Proloquo2Go were mixed. Most of the dedicated device makers were not pleased. They feared this new low cost solution would erode their market. Many SLPs were worried. They were suddenly confronted with families that did not want to wait for an AAC assessment and funding, but went ahead and made their own purchase.

Insurance and other funding sources ignored these new developments. They refused to fund any form of AAC based on mainstream devices. Only devices that could be used soley for speech generation were funded.

Schools were generally excited. Lower costs meant more communication devices for more students. Staff found these consumer devices easier to use than the dedicated devices.

Mary Pitt a retired special educator from Australia, remembers: “AAC devices were rarely seen. There was a long consultancy period and time delay for funding. There was also a reluctance for users because they were so cumbersome and unfamiliar to staff. The simplicity and availability of iPads and Proloquo2Go has had the spiraling effect of motivating staff. This results in greater success by the students, increases motivation of staff and so forth.”

Parents could now make their own decisions without relying on therapists or funding. They were elated and felt liberated by this lightweight and affordable option. Helen Thorton explains that the devices her son used previously “were extremely expensive and cumbersome to edit.” With Proloquo2Go, the ability to edit on the go and take photos on the device, revolutionized their trips to Disney. “It is SOOOO much easier to carry a single iPad around in my handbag than it is to carry a folder with paper-based materials. I see other parents with huge folders for their kids, and they only contain a couple hundred words,” says Katya Galley, mother of a son who uses AAC.

It took about a year before professionals warmed to this new technology. A key factor was the enthusiasm and acceptance of AAC use they observed among families.

Adult AAC users were among the early adopters. Glenda Watson Hyatt, writer and motivational speaker described her first 24 hours with an iPad and Proloquo2Go in 2010. Before, she had relied on an alphabet card and notes she typed beforehand. Now, opportunities to communicate were endless. She could have a casual conversation in a bar, present her ideas in meetings.

In her words, a communication device “provided a sense of normalcy and acceptance”. Within days, she ordered her first mocha Frappuccino at Starbucks by herself:

“No misunderstanding or hand gesturing involved. It was so cool, like another door had just opened for me!”.

A process of democratization

With the iPad release in April 2010 things really took off. The democratization of AAC had started. The adoption of our own Proloquo2Go app skyrocketed. Access to communication devices was no longer limited to individuals eligible for funding. Professionals were no longer, through a formal assessment process, the gatekeepers to communication devices. Parents and individuals with communication challenges could now make their own decisions.

Laura Giovanetti, an AAC specialist explains how apps made high-tech AAC much more accessible.

“Dedicated AAC devices with dynamic displays were VERY expensive back then. We took a lot more time assessing using low tech picture communication prior to recommending a device. I don’t think that happens as much anymore,” she explains.

Low-cost communication devices were recommended to more people. Those without funding stood a chance of paying for it themselves.

The sheer cost of dedicated devices meant that teachers were often afraid to use them for fear or damage or loss. Debbie Petropoulos reflects on the DynaVox MiniMo dedicated device her daughter Callee initially used to communicate: “While at school, the MiniMo spent most of the day locked away in the teacher’s cabinet.” High-tech AAC on consumer devices was not stigmatizing but cool. Unlike the bulkier traditional devices, iPods and iPads were affordable enough that students could use them.

After iPad arrived, many more joined us. Soon there were a few hundred, often fairly limited, AAC apps on the App Store. By 2011, Saltillo became the first traditional AAC company to release an iOS app, followed by Tobii Technology. In 2012, PRC released their iOS app and in 2014 Dynavox introduced theirs. Dave Hershberger, CEO of PRC remembers “iPod touch and iPhone were a big step forward in technology, but maybe more importantly, the App Store changed the world in how software was distributed.”

Within a few years, the App Store and iOS platform were no longer perceived as a threat to the AAC market. They became a challenge and opportunity for old and new players alike. The sales of dedicated communication devices did not plummet, even as some companies struggled. Dedicated communication devices are still funded. To a much more limited degree so are iOS apps.

The difference it makes

The democratization of communication devices had a huge impact on AAC users and their families. iPad based communication solutions have seen a huge uptake among individuals with autism, Down syndrome and developmental delays. These are the individuals who previously often fell out of funding criteria. We have also seen a significant uptake in early years AAC introduction. Because the technology is affordable and light, children as young as two are getting access. This can make a key difference in terms of whether they will be able to go to mainstream schools. Not to mention quality of life.

Lisa Juliar shares her son Cooper’s experience: “Before having an iPad and apps he was segregated in a contained classroom all day. He worked in a pretend store using fake money and practicing the same grocery list for his reading every single day all year. His goals from the school team included galloping and cleaning lunch tables.”

With a means to communicate come many more opportunities for learning. It gives children the chance to show what they are capable of. They become included in their classroom, and ultimately in society. Lisa continues, highlighting the impact a communication device has on his education:

“Cooper is now in 9th grade. He is included in general education classes all day. He has friends to hang out with and is learning things like Shakespeare, the Periodic table. He is actually having lunch with his buddies rather than cleaning up after them. It has been a life changer…for Cooper, for me and for society!”

Before the advent of the App Store in the US only 12,000 people receive access to dedicated communication devices annually. Today, the figure is an estimated 15,000 to 20,000 people. The iOS AAC market provides an additional 40,000 to 60,000 people with a communication app each year. In total, over 5 times as many people are receiving access to a means to communicate.

Conclusion

A major shift towards a democratization in the provision of communication devices has happened. From production, to distribution, to access. The market expanded to include new age groups and new diagnoses, at a much more affordable price point.

“The impact of mainstream devices creating opportunities for affordable AAC, apps and devices has opened up the worlds of those with disabilities.” says Gina Wilson-Burns, mom of an AAC user.

The democratization of communication devices has not only opened up the worlds of those with disabilities. Combined with the release of iPad, it forced traditional manufacturers to innovate in hardware, software, distribution models and pricing. Creating and distributing communication devices is no longer limited to a handful of companies. It has enabled new players to bring innovation and a more user-centered design to the market.

Unlike some feared, AAC apps did not kill the existing market. There are now hundreds of companies providing communication solutions in several languages to a worldwide market. It made high-tech communication affordable for hundreds of thousands of people.The starting price for a communication device is now less than US $200 rather than $2,000.

Professionals are no longer gatekeepers determining who gets a device and who doesn’t. Family members and AAC users are liberated, and children are getting more opportunities to learn. The most important result of this democratization is obvious: powerful communication tools are getting into the hands of more people who need them

~ David Niemeijer, founder and CEO of AssistiveWare

David has a PhD in Agricultural and Environmental Sciences, but turned to developing assistive technology after a friend of his became paralyzed in a car accident and needed an on-screen keyboard for his Mac. He founded AssistiveWare in 2000. David has dedicated his life to the development of universal access and augmentative and alternative communication solutions in close collaboration with the community AssistiveWare serves. He is a frequent presenter at AT and AAC conferences worldwide.