Finding a voice: Device helps speech impaired communicate

By Mary Garrigan, Journal Staff Writer | Sunday, September 25, 2005

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RAPID CITY -- Ten-year-old Drew Burgess likes to tell people about the things he saw and the fun he had during a trip to Disneyworld this summer.

And, like many kids at this time of year, Drew is already in serious negotiations with his mom, Monica, about his Halloween costume.

But when this blond-haired dynamo describes his summer vacation or yells "Trick or Treat" on Halloween night, he does so with the help of a Chat PC-II, a portable handheld computing device that speaks for him and is known in the Burgess house simply as "Drew's Talker."

Drew was born with Down Syndrome, and his speech and language skills are far below average for his age. "His speech is pretty unintelligible," Monica Burgess said.

Even family members, who are adept at interpreting a wide range of Drew's gestures, sign language and facial expressions, can have trouble translating more than a word or two of his speech.

That began to change four years ago when his mother, who has spent more than 20 years working in the technology industry, discovered Augmentative and Alternative Communication, or AAC, devices for people like Drew, who have trouble generating intelligible speech.

Words through images

Drew's "talker" is an iPaq, or PDA (personal digital assistant), device that has been modified with special communications software, a voice synthesizer and a speaker. It stores 150 pages of photographs, symbols and icons that appear on its small screen and, when touched by a finger or stylus, produce spoken words, phrases and sentences that Drew can combine into what he wants to say. Each page contains 25 images, and about 30 of those pages have been customized to Drew's family, which includes his dad, Jim, and his older brother, Nick, 15. One particular icon even lets Drew complain to his parents that Nick is being mean to him.

The rest of the icons contain words, phrases and sentences typically spoken by kids at Drew's stage of development.

Right now, that's about age 4 or 5, his mother said. His social and emotional development lags behind his chronological age, and his language skills, despite years of speech therapy, are still those of a 2-year-old who is very hard to understand. But his intelligence level is much higher. That makes it possible for him to operate the Chat PC-II with ease, according to Burgess, and he has an amazing "geographic memory" for the location of symbols and icons on the various screens.

The device also has a keyboard with word prediction software for those people who can type out their own messages, but Drew is still mastering his ABCs and not yet literate, so he is just beginning to use it.

Local cooperative provides help

Alternative means of communication for people without spoken language have always existed, said Patrick Czerny, coordinator of technical services at Dakotalink in Rapid City. A pencil and paper, a simple picture book or a communication board are all predecessors of these new generations of pocket-sized, dynamic-display personal computers.

Very basic AAC devices became available about the same time personal computers did, and the programmable devices such as the one Drew uses have been on the market for seven or eight years now, Czerny said. Dakotalink, which is part of the educational cooperative Black Hills Special Services, provides a variety of assistive technology to people with disabilities throughout the state, as well as the assessment, training and services they need to use that equipment.

Through a federal grant, Dakotalink has acquired a large inventory of various AAC devices that it loans to people for two-week trial periods, Czerny said.

The Burgesses tested an AAC from Dakotalink before buying Drew's machine from Saltillo, the computer technology company that now employs Monica Burgess as an AAC consultant.

The Chat PC-II sells for $2,199, but other machines with more sophisticated communication capabilities can cost between $6,000 and $8,000 each, Czerny said. As the technology improves, the price of the devices will continue to fall, he said. "You definitely get more for your money now," he said.

AAC devices are covered by most medical insurance plans, Medicare and Medicaid, when prescribed by doctors and speech pathologists.

Two types of devices

Perhaps the world's most famous AAC user is physicist Stephen Hawking, who suffers from ALS, also known as Lou Gehrig's Disease.

Hawking is typical of users who lost the ability to speak due to disease, accident or aging. They tend to use orthographic, or keyboard, devices, which allow them to type in exactly what they want to say using word prediction software and abbreviation expansion software, Czerny said.

Users such as Drew, who because of developmental disabilities or deafness never acquired normal language, tend to use the iconic display devices more, he said.

For both types of users, communicating with assistive technology improves their quality of life, Czerny said.

"It's a quality of life issue for those people who cannot develop or have lost their natural speech. The inability to communicate can dramatically increase the frustration level of individuals," he said. "People who have a desire to communicate but can't are people that become very frustrated."

Newfound freedom

In childhood, that frustration often manifests itself in temper tantrums or other behavior problems at home and school. "Often, what is perceived as a behavior problem is actually a communication problem. These devices have improved communication with caregivers and teachers, and they allow people to take better care of themselves," Czerny said.

Right now, Drew's AAC device is helping him interact with his peers at Meadowbrook School, where he spends half his day in a regular fourth-grade classroom and half in a special-education classroom. "It assists with inclusion," his mother said.

Adults with Down Syndrome are sometimes functionally mute, Burgess said. That happens not because they are unable to speak, but because they choose not to, often after enduring years of frustration because people could not easily understand them when they did try to communicate.

AAC means her son and other people like him can enjoy a level of independence as an adult that would not be possible without it, Burgess said. "I want him to be able to say things for himself - to order a pizza, to call for a taxi," Burgess said. "This is all aimed at him being 16, 18 or older and out in the community. He doesn't need it so much in our family, but he will in the larger society."

Burgess, who speaks at assistive-technology conferences nationwide, recently met a mother with a 43-year-old functionally mute daughter who wept when introduced to AAC for the first time. "I think it was all those years of frustration they endured," she said.

Technology debated, promoted

Sometimes, parents of children with speech disabilities resist using an AAC device because of their desire to encourage and develop natural language skills first.

When to use assistive speech technology is an ongoing debate, and parents sometimes feel they have to decide between promoting a child's own speech and using a communication device.

Both Czerny and Burgess believe any concerns about electronic language devices delaying or replacing natural speech are unfounded.

"This device has made Drew more verbal, not less so," Burgess said. "I think it took some of the pressure about communicating off him."

Before he got his "talker," Drew would only answer the question, "What's your name?" when first prompted by his parents to say "Drew."

But the first time his father, Jim, asked him his name after he got the Chat PC-II, the then-6-year-old Drew, unprompted, touched the photo of himself and the machine responded, "My name is Drew."

"You could just see him relax," Burgess said.

Studies have proven what the Burgess family already knows, Czerny said. The devices tend to improve, not diminish, natural speech.

"I believe strongly that they improve language development, and language development is key in educational development," he said. "I would want to develop language skills any way possible as soon as possible. That's a key issue: When is the right age to consider an AAC device?" Czerny said.

"I would have started Drew at age 3 if I knew then what I know now," Burgess said.

No one knows exactly how many people in this area use AAC devices, but Burgess believes many more people could benefit from them.

Children who suffer from autism, cerebral palsy and other disorders that diminish speech can use them, too. She knows of a couple dozen people using them now but believes perhaps 200 or more in the region might benefit from an AAC device.

One of them is her own son who, increasingly, has lots to say.

With the help of a little black box that hangs on his hip, Drew Burgess is finding his voice.

Contact Mary Garrigan at 394-8410 or mary.garrigan@rapidcityjournal.com