Sierra Lode, born with cerebral palsy, has spent most her life unable to talk. She has used many augmentative and alternative communication devices in her life, but most weren’t perfect. It took years to find the optimal AAC device, but when Lode discovered it, her life drastically changed — the technology would take her to great places that few people could have imagined.
In 1986 when Lode was 3, she received her first AAC — the “Light Talker.” The device scanned rows of different pictures representing what she wanted to say. When the device displayed what she wanted to say, she’d press a switch mounted near her cheek.
Having people wait on her to speak and not being able to be spontaneous in a conversation was difficult. “In circle, I would get passed up until I could activate my switch at the proper time,” she says. “I would be giving the weather when the topic of conversation had moved on.”
When she reached kindergarten, she used a Macintosh laptop with Speaking Dynamically. She’d still have to use the scanning method with a switch, but she had quicker access to a more extensive vocabulary. Throughout elementary, middle and high school, her communication still relied on scanning devices, which was becoming impractical. Early in high school she tried a system with a dot she wore on her glasses. She would try to point at different places on the screen that would activate speech. “Unfortunately, I was not good at that and gave it up,” she says. She even learned Morse code for better speech access but it, too, proved impractical.
During high school, Lode subscribed to an AAC listserv that discussed many different communication technologies. She began receiving information about a new technology from the speech pathologists, developers and consumers who belonged to the list. Little did she know, but she was soon to find a much more efficient way to communicate.
Enter Eye Gaze Technology
Eye gaze devices have helped people with severe disabilities communicate for over three decades. This technology gives users control of their computer by focusing or dwelling their gaze on the screen at desired menus, keys or icons for a set duration of time. When the dwell time passes, the system clicks on what the user is looking at. People who can’t speak can use a built-in, natural non-robotic Stephen Hawking-sounding voice to talk to anyone they wish.
This marvel of computing is dependent on corneal-reflection tracking. Most systems use a sensor inside a computer-mounted camera to shine low-power infrared light on the cornea. Light reflects off the cornea and creates a detectable glint spot. The system pinpoints where the user is looking by comparing the glint spot to the position of the pupil. As the user looks around the screen, the glint spot keeps changing. The system’s camera predicts in real-time where a user will look by continuously taking images of the eye and running the images through a processor, which uses mathematical algorithms to make the prediction.
Many eye gaze users use the Grid software. The Grid is a program that lets people create custom screens and icons to do many tasks. Icons can be created in any size with custom pictures and text. When clicked, these icons can control a television and other infrared-controlled devices, play music, activate a chime tone to call caregivers, etc. A user can also design custom on-screen keyboards in the Grid with keys in any position.
LC Technologies has been at the forefront of eye gaze since 1986, when a group of engineers created the company in a Virginia basement. They soon released the Eye Gaze System, a DOS computer with an enormous monitor. Nancy Cleveland, LC Technologies’ medical director, says it wasn’t portable, but it was a miracle for those with ALS, traumatic brain injuries or strokes. In her years with the company, Cleveland has seen eye gaze devices grow smaller, allowing for greater portability.
Eye gaze technology has dropped in price over the years, but it’s still a major investment. LC Technologies offers systems priced between $8,700 and $11,000. Every system comes with a mount and all the needed software and hardware. The optional Bluetooth Edge Link turns the Eyegaze Edge into a peripheral keyboard and mouse that can control any Windows or Mac computer.
Predicting a user’s gaze point so they can type accurately requires a quality camera and sophisticated image processing algorithms. Cleveland says the company’s systems remain the most accurate in the industry because they haven’t sacrificed accuracy for price.
It takes several days for most users to adjust to eye gaze. This initial phase of becoming familiar with the screen is important for the new user. “When you learn how to type, you’re creating muscle memory for your eyes just like a touch typist does for their hands,” she says. Once a person is a seasoned user, a long gaze setting — the time it takes to trigger a click — can become uncomfortable. Cleveland says people who are very familiar with their screen usually have a gaze setting between one-fifth and two-thirds of a second.
LC Technologies has seen users of their devices achieve great success. Users have written nine published books and many have held full-time jobs in areas as complex as computer programming. Seeing technology change people’s lives makes Cleveland’s job rewarding. “There are smart people in the world who have stuff to contribute, but whose physical ability prevents that from happening, and we’re providing something that allows that to happen,” she says.
Securing funding for an eye gaze device is difficult, but most companies will help with the process. An important step is consulting with a speech-language pathologist for an evaluation. Your SLP will provide much of the documentation required by your insurance. Your doctor also must write a prescription and complete any required paperwork.
Medicaid, Medicare, Tricare, the VA, and most private insurance companies will cover eye gaze technology if it’s a speech generating device for someone who can’t speak. It’s considered medically necessary to be able to communicate your physical needs to those around you. Devices aren’t typically covered for people who can speak. Contact your insurance provider for specific coverage questions.
The Long Road Back
Two-time X Games champion Stephen Murray was at the top of the BMX world until a 2007 Dew Tour event in Baltimore changed everything. While Murray was attempting the double backflip that won him X Games gold, he landed on his head, crushing his C3, C4 and C5 vertebrae.
Murray’s career was suddenly over — and the extreme sports community was left in shock. The road back for the Newcastle, United Kingdom, native would be long, but he’d again become involved in the sport that’s been his life. Eye gaze technology would help him not only return to involvement with BMX but also help him run a thriving business.
Murray, who lives in Riverside, Calif., wanted to regain computer access, so he tried options including voice activation, a chin-controlled mouse and a head tracker mouse. None of these were an optimal solution, but things changed when Murray’s neighbor told him about the tech company, Tobii. Sweden-based Tobii manufactures eye-operated computer systems and augmentative communication devices.
He began researching Tobii’s technology, and a demonstration was soon arranged. The technology immediately showed promise for him. He’d soon have his own device after helping Tobii conduct valuable beta testing on its new products. It was frustrating at times to compute in a new way, but one day everything clicked. “It was amazing — all of a sudden everything started to work,” he says. Now he had quality computer access any time he wanted it.
Murray uses the Tobii PCEye Go, a small device that attaches to a computer by USB. When he wants to use the computer, he rolls up to the device, which is on a wall mount. By dwell clicking with his gaze, he can type, send e-mails, access his Facebook account and even make private phone calls. He says eye gaze has helped him live a better life and given him a positive outlook.
Shortly after his accident, the organization Stay Strong was founded to bring attention to Murray’s situation. What began as a T-shirt and charity bracelet has grown into a full-time business that offers a line of clothing, BMX accessories and equipment. The business provides valuable support to Murray and his two sons.
Murray couldn’t run Stay Strong without eye gaze technology. He’s able to send e-mails, Skype and call customers and clients, keep his 13,500 Facebook followers updated and do other business-related tasks. It’s important for him to have privacy when conducting his business. Eye gaze allows him to do this without interference from caregivers.
Extreme and action sports athletes often have poor insurance benefits if they become injured. Murray is fighting to create better insurance opportunities for athletes in his sport. He wants all athletes to get what they need if they’re hurt. It’s also been important for him to work with Tobii in helping them pursue greater coverage for their devices.
Eye gaze has changed Murray’s life in countless ways. He encourages others with disabilities to not give up because technology can help. He says eye gaze is a challenge like anything new, but if you stick with it, you’ll be blown away.
65-year-old Andrea Solomon spent nearly three decades as an educator, until 2006 when she retired due to her multiple sclerosis. Solomon’s life was limited more and more by MS, but eye gaze technology would become a life-changing force for her. It not only helped her communicate with the world around her, but it also helped Solomon regain independence.
When she moved into the Leonard Florence Center for Living in December 2011, she was using an iPad, but it was becoming more difficult. She tried a head-operated mouse that used a reflective silver-tracking dot worn by the user. It helped Solomon’s ability to use a computer, but it was slow.
One day the on-staff speech language pathologist noticed Solomon was having trouble projecting her voice. It was suggested Solomon try a Tobii eye gaze system that was donated to the center. She found the Tobii system to be very easy to use. It was an exciting moment. “The first time I tried eye gaze technology, I felt like a little kid,” she says. “I wanted to jump up and down.”
Eye gaze technology has greatly benefited Solomon. She uses the dwell setting to check and compose e-mails. A writer at heart, she has used her Tobii to write over a dozen children’s short stories, which she hopes to publish. The Tobii device also helps her read books on her Kindle for PC.
There are times when it’s difficult for her to be heard over the din of ringing call bells, music and loud conversations. Her eye gaze device helps her to clearly communicate with her family, friends and housemates when her voice is in need of an extra boost.
The Tobii eye gaze has greatly helped, but it hasn’t been glitch-free. Solomon says she can’t highlight text to move or delete it in a document. Other issues are difficulty attaching files to e-mails and difficulty viewing web pages on the screen. Tobii offers a screen magnifier, but she says it can be difficult to use.
Still, she couldn’t imagine being without it. She not only would be without a voice when she needed it, but would lose a great deal of independence. “Without having the Tobii eyegaze technology, I wouldn’t be able to read or write,” she says. “Not even e-mail, without help.”
From Not Speaking to Motivational Speaking
In the fall of 2006 Lode enrolled at the University of Montana as a communications major. Shortly after enrolling, she visited the University of Montana Rural Institute’s Technology Lab to try out eye gaze technology. For the first time in 19 years, she could directly select what she wanted instead of relying on a scanning device. After an evaluation by a knowledgeable speech language pathologist, Lode got an eye gaze system covered by Montana Medicaid.
The following June, she got the ERICA eye gaze system from Eye Response Technologies. Her new device would prove critical in her college studies, especially when a long paper had to be written. With eye gaze, she could only take two classes a semester to be able to keep up. It would take six years, but Lode graduated on May 12, 2012, with an associates degree in communications. “I am 100 percent sure I would not be able to do the work that college demands without the use of an eye gaze computer system,” she says. “You can learn all the material required, but if you do not have a means to give back that information as proof that you learned it, it means nothing.”
She loves using her system to talk with her therapist, meet new friends and access Facebook and the Internet. She also uses her eye gaze to give presentations to classes at all levels of education about being a person with a disability, living independently and being a self-advocate.
Currently, she is using the Dynavox EyeMax, which features a natural sounding computer voice. This development is a big deal to Lode. “I claim the voice I use as my very own — it is the way I sound, and the way I sound is understandable, human and pleasant,” she says.
As wonderful as it is, eye gaze does have a slight downside. She says some days it can be difficult to use her system because her cerebral palsy can affect the ability to control fine eye movement.
Since graduating college, Lode has been working on launching Speaking Out of the Box, a motivational speaking business. She wants to speak at conferences that address issues of transition of youth with disabilities into the adult world. “I have been successful in my education and independent living skills in spite of having severe disabilities,” she says. “I want other young adults like me to know what is achievable and fulfilling in their lives.”
Lode’s life would be extremely difficult without eye gaze technology. “It is the only way I can be specific in my communication, especially when it is critical that I give detailed information to medical professionals,” she says. “I would also be socially inept, as well as incapable of a developing my career as a motivational speaker.”
It’s clear that eye gaze technology can play a critical role in helping people with severe communication difficulties regain their independence, meet their goals and live a more fulfilling life.