|The One Write Co.'s Cyrano Communicator enables users to create blocks of information using digital pictures taken from the device's embedded camera.
Today, not all augmentative alternative communication (AAC) devices are the size of a laptop computer. Smaller, hand-held AAC devices have added a new dimension to the assistive technology market, and their popularity continues to soar.
The cost of portable AAC devices ranges from $1,200 to around $3,500, depending upon the features and software. They’ve grown in popularity largely because they resemble hand-held PDAs (personal data assistants). They’re extremely portable, and easy to use.
Kathryn Welsh, a certified speech-language pathologist (SLP) at the MDA/ALS center at the University of Washington in Seattle, said, “A lot of the folks that are still ambulatory want those devices and don’t want the stigma of a larger device. They want it to look more like a Palm Pilot.”
Several varieties are available with various features, including voice output; symbol- and text-based features; word/phrase prediction; picture-based interface; and text-to-speech interface.
Jeff Dahlen, president of Words+ Inc., explained, “The advantages are clear — almost as much speech power in a much smaller, lighter, less expensive package. Some of the disadvantages are pretty clear, too — you may need good dexterity and good eyesight to use them.”
Industry insiders agree that while most people are buying the smaller AAC devices as their primary means of communication, others are purchasing them as secondary, or backup devices that are more convenient to use at work, while running errands or traveling.
Joanne Kaufmann of DynaVox Technologies said, “The smaller devices are appealing because they are based on the PDA, and they provide a familiar look and feel.”
Is a hand-held device right for you?
|The Palmtop from DynaVox has PC-based Impact editing software, and holds up to 218 minutes of digitized speech and sound.
Welsh provided four criteria to apply before buying a portable, hand-held AAC device. You must:
- be ambulatory;
- have adequate hand and arm function;
- present only bulbar ALS symptoms; and
- show a history of slow progression.
Welsh said she’s had clients who meet the four criteria and who’ve used a portable, hand-held device for a year or two before needing to transition to a larger, more complex system. But, she cautions that the device is rarely the most appropriate long-term solution for people with ALS.
Mary Ann Lowe, a registered SLP at Nova Southeastern University in Fort Lauderdale, Fla., agreed. “I would recommend them for a person who is ambulatory, usually the bulbar ALS, and still able to use their hands.”
Registered SLP Pat Ourand, who works with clients at the MDA clinic at Georgetown University in Washington, and the MDA/ALS center at Johns Hopkins University in Baltimore, advised that a person with ALS also must have good cognitive, linguistic, motor and sensory skills in order to effectively use a smaller device.
The issue of funding
Keep in mind that health care team members may have information about equipment loan closets or special funding programs.
MDA will assist one time with the purchase of prescribed AAC devices, to help defray the costs.
|The Say-it! SAM from Words+ Inc. is a PDA-based communicator with symbol- and text-based features.
Medicare or private insurance isn’t going to pay for more than one device. Nor will Medicare reimburse for the purchase of integrated AAC devices that feature computer-access capabilities, or functions like e-mail, Internet or word processing.
“Three different times, I’ve had people who decided to go out and buy a smaller device on their own,” Lowe said. “They do that as an out-of-pocket expense, and then they do one through Medicare for usually a larger system for their home.”
Ray Schmidt, vice president of the One Write Company, estimates that about 50 percent of the company’s hand-held Cyrano Communicator devices have been purchased privately.
Those who don’t purchase privately complete the evaluation process with a registered SLP, who completes a report that is submitted to Medicare. It generally takes three months for clients to receive their devices, once approved, according to Lowe.
Lowe and other AAC experts who are knowledgeable about ALS stress the importance of not waiting until your speech is affected to have an evaluation and start shopping around for a communication device.
While portable PDA-like AAC devices may be attractive, their small size may soon make them unmanageable to a person with ALS. Consult your health care team, especially an SLP, and go through the evaluation process to determine the right communication aid for you.
“We have to look at cognitive, linguistic, motor and sensory skills, and then project what those might look like in six months, a year or two years based on how their disease is progressing,” Ourand said.
Sandra Mattar, a registered SLP at the MDA/ALS center at UCLA, reiterated that some of the portable, hand-held devices “may not be useful for the entire course of the disease.”
Lowe added, “The small, hand-held devices are absolutely great; however, for the ALS population, it really depends on their physical abilities.”