Alternative augmentative communication (AAC) devices have come a long way since the early days. Now people with ALS can obtain speech-generating devices that provide more than basic text-to-speech output.
All-in-one, or “integrated” communication solutions offer seamless access to e-mail, Internet and other computer applications, as well as speech. They’re available as dynamic display (large touch screen) communication devices, which also serve as fully functioning Windows XP computers.
Users can record directly onto these devices to preserve their speech. The vast majority of integrated systems incorporate “smart” communication software that keeps track of the user’s speech patterns and commonly used words and phrases for greater rate enhancement and productivity. Word prediction and next-word prediction systems also work together to help the user get the message out faster.
It takes time to select, order, receive and learn how to use these devices.
Typically, it takes a few months to receive a device funded through Medicare and between one to six months with private insurance, says Amy Wright, an SLP at the MDA/ALS Center at Carolinas Medical Center in Charlotte, N.C. Many AAC manufacturers will expedite paperwork for people with ALS because they recognize the disease can change quickly.
Once you receive the device, it will take time to customize it and learn how to use it, especially if you have limited computer experience. Users also may require specialized training from an SLP and/or AAC vendor, advises Winston Cheng, an SLP at the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University Medical Center in New York.
Think long term. While portable, hand-held devices are popular and less expensive, Cheng cautions, “They may not continue to be an efficient way to communicate as a person’s physical status changes, and this can be problematic if your insurance won’t provide funding for another AAC device.”
Adds Wright, “We try to anticipate people’s future needs, which is why we always recommend something that has multiple modes of access.”
What’s it cost?
AAC prices range from $2,500 to $8,500 depending upon software selections, other add-on options and choice of access methods (head mouse/tracker, switch scanning, etc.).
Medicare will cover up to 80 percent of the cost for an AAC device, and MDA offers a one-time $2,000 grant for devices prescribed through its clinics. MDA also will provide $500 annually for repairs and modifications.
Medicare won’t fund integrated communication systems, but virtually all such devices are available in cheaper “dedicated” versions that function only as speech-generating devices, not computers. Medicare usually covers dedicated devices, and the computer features can be “unlocked” after purchase, for an additional fee paid by the user.
All-in-one solution at work
Since February, Tammy Brown, a mother of two young children in Thida, Ark., has been using her communication device — the ECO-14 from Prentke Romich Company — on a part-time basis in order to customize it and learn about its features before she needs to rely on it for speech.
“I wanted to have my computer and communication device all in one,” says Brown, 35, via e-mail, noting that she chose the ECO-14 because it can access the Internet just like a laptop. “My husband set it up with a wireless card so I can be anywhere in the house and send e-mails or be on the Internet. It also plays DVDs, which my son thinks is cool, and you can add programs and games.”
Brown, who received an ALS diagnosis in December 2004, paid $150 to unlock her dedicated device, which cost $7,595. Paralyzed from the neck down, she relies on the device’s built-in head-pointing system, TrackerPro from Madentec ($895), which operates via a reflective dot on the corner of her eyeglasses.
“Everyone that sees me use the device wants to know how I control it, and after I show them they’re amazed,” she says.
Brown, who says her speech is getting worse everyday, spends the majority of her time voice banking onto the device, so that when she loses her voice completely, her children still will be able to hear “I love you” in her voice instead of a synthetic one.
“I want to be prepared for the future,” Brown explains. “I have a page set up for each child that’s unique to them. I have buttons set up asking my daughter about her date, which will be a while since she’s 12. My son helps me record a lot of the stuff, and we laugh the whole time because he likes to get a little crazy.”
While the ECO-14 is larger (with a 14.1-inch touch screen) than some devices on the market, Brown is sold on its ability to control appliances like the TV, its built-in DVD/CD drive, and the Internet access that allows her to keep in touch with family and friends. She also helps her children with homework, and helps her husband pay bills and stay on top of the family’s finances via the Internet.
“Since I’m unable to move anything but my head, being able to help out makes me feel like I’m part of the family again,” she says.
Programming the device has been challenging, but Brown’s had plenty of help from her husband and children.
“You have to just practice with it to understand how to get the most out of the device. We have shortcuts set up for me to get to the Internet, e-mail and Microsoft Word documents. Once it’s set up the way you want, you can expand on it from there.”
Try before you buy
What works well for someone else may not be the best for you, advises Cheng.
In addition to working with the SLP at the local MDA clinic, check with the local MDA loan closet to try loaner devices. Most manufacturers have rental or loan programs; in some cases, rental costs can be applied to the purchase price.
The upfront effort is worth it, says Brown. “The independence is the best thing of all.”
(V and Vmax)
Gus Communication Devices
(communicator series packages)
The Great Talking Box Company
Prentke Romich Company
(MiniMerc and Mercury II)