The article in The New York Times about insurers refusing to pay for speech-generating devices has hit a sore point among the disability community. Today’s newspaper reserves a section for comments from people who use these devices, including Roger Ebert, the film critic for The Chicago Sun-Times.
Says Ebert: I am one of those you write about who uses a computer voice after losing the power of speech as a result of cancer surgery. After trying an $8,000 custom device with little computing power and a small, dim screen, I tried the built-in speech software on my MacBook and found it much more practical … Anyone who uses a computer and has lost the power of speech knows that e-mail becomes invaluable. It’s stupid of insurance companies to insist on an inferior device costing 10 times as much.
Augie Nieto, a former fitness champion who has ALS and is well known in disability circles, also weighed in on DynaVox’s EyeMax, a speech device that he controls with his eyes: I use a DynaVox EyeMax, which allows me to communicate and write using my eyes. In fact, I could not have written this letter with a netbook or iPhone. Also, many people with autism exhibit challenging behavior and may abuse these devices. Unlike netbooks and iPhones, specialized speech devices are designed to last for years in these environments.
Nieto makes a good point, but he made one major mistake: He is on the board of directors at DynaVox, a role that likely compensates him, and he should have disclosed this in his letter.
Lewis Golinker, director of the Assistive Technology Law Center in Ithaca, N.Y., writes: You are to be applauded for giving front-page coverage to people with complex and severe communication impairments. Unfortunately, people who need speech-generating devices are an example of those who face arbitrary exclusions and denials…regulation is needed to control [this.]
The debate also spills out into other areas of disability. A woman named Smita Desai of Lexington, Mass., writes that after breaking her legs and needing to get to her doctor’s office for follow-up visits: The cab would have cost $75 round trip, which the insurance would not pay for. But it would pay for a wheelchair van, which cost $800 round trip.
This is hardly an unfamiliar scenario; at the U.S. Business Leadership Network conference in Washington, D.C., an attendee using a wheelchair had to hire a specialty van to transport him to his hotel at a cost of more than $100, while others could take $10 regular cabs.
And on the medical side, speech-language pathologist Lorraine Cohen writes: Empowerment and wholeness [is] restored to nonverbal people when they can touch a dynamic screen, activate a switch or blink an eye on a speech-generating device to say for the first time what we’ve all said a thousand times: “Hi, my name is.”
And I’d like to add my own perspective, which focuses more on the cost side: There will come a day when there is no more assistive technology. In fact many technology companies today, from giants like IBM to smaller firms like Serotek, aspire to this notion.
In the future technology will be universally designed from the ground up to make it accessible to everyone, including people with disabilities. We’re already seeing this now, with Apple’s products.
While this won’t solve the insurance paradox, it will empower more people with disabilities to eschew specialty devices. Instead, they might walk into a Best Buy or Apple store to get a laptop with say, speech capabilities, or download what they need online, while reaping the benefits of cost, convenience and coolness.