Joe Kline / The Bulletin file photoGlenn Asbury, who died in February, advocated for speech generating devices to be connected to the Internet.

Last fall, Glenn Asbury, of Bend, invited a reporter into his home in hopes of spreading the word about an issue of utmost importance to him: The federal government had proposed taking away one of his main forms of communication.

Eight years into his battle with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, the 55-year-old former skier and scuba diver could no longer speak on his own, so he relied on a speech-generating device that read aloud phrases he typed by fixing his gaze upon each letter.

In addition to allowing him to communicate with those around him, the device also helped Asbury, who could not move most of his body and used a power wheelchair, keep in touch with the outside world. He spent hours each day emailing friends and family members, including his two children, and scheduling doctor visits.

Last year, however, the federal Centers for Medicare & Medicaid Services announced that Medicare, its program that provides health care for seniors and individuals with disabilities, would only pay for devices that could not access the Internet.

“CMS made life very difficult for people who need communication devices in 2014,” said Lewis Golinker, director of the Assistive Technology Law Center, a law firm based in Ithaca, New York, that advocates for access to devices for individuals with disabilities.

In the span of one month, the Centers for Medicare & Medicaid Services received nearly 2,300 comments from patients and advocates, most of whom described the importance of being able to access the Internet with speech-generating devices. Several members of Congress expressed concern about the issue in an August letter to then-CMS Administrator Marilyn Tavenner.

The agency, it seems, took the comments to heart. It has since proposed a revised rule that would allow the speech-generating devices it covers to send emails and text messages that allow patients to communicate remotely.

“Clearly, Medicare staff knew that they had touched a nerve with what had occurred in 2014,” said Golinker, who has followed the issue closely. “A lot of people voiced their view.”

Asbury likely would have been thrilled to learn of the development, but he will not see his advocacy pay off. He died in his sleep in February, about two months before CMS issued its revised rule at the end of April.

“It meant so much that he could be an advocate,” said Betsy Paige, a regional services coordinator in Bend for the ALS Association of Oregon and SW Washington who worked closely with Asbury. “We still are so missing Glenn.”

The revised rule also says speech-generating devices should be able to download technology updates from their manufacturers but that beneficiaries must pay for any costs associated with Internet or phone capabilities. Advocates have long argued that the ability for a device to access the Internet does not cost Medicare additional money, and that beneficiaries pay for their own Internet access.

If approved, the revised rule would take effect in July. Golinker said his only suggestion would be to have it take effect immediately.

“While this draft is one that alleviates a lot of anxiety, it doesn’t resolve the problem until it becomes final,” he said.

In April, the U.S. Senate also approved a measure that would, among other things, prevent patients using speech-generating devices from losing Medicare coverage for their devices once they enter hospitals or nursing facilities. The Steve Gleason Act, named after a former football player with ALS, passed a House committee this week and will soon go before the full House for a vote.

Medicare has covered speech-generating devices since 2001. Centers for Medicare & Medicaid Services officials last fall argued they had not made a change — rather, they were merely reaffirming an existing rule. Disability advocates such as Golinker argued the existing rules did not prevent beneficiaries from altering the devices to be able to access the Internet, as long as it was done at their own expense.

Whether or not it constituted a change, CMS officials would not say why they issued the original notice. Disability advocates theorized it was one attempt to avert constant scrutiny of potential waste in the massive federal program.

Individuals with ALS, a condition that attacks the nerve cells and eventually causes people to lose the ability to move their bodies, even as their minds remain clear, are not the only ones who use the devices. People with cerebral palsy, Rett syndrome, muscular dystrophy, multiple sclerosis and Parkinson’s disease also use them.

Karen Galloway, care services director for the ALS Association’s Oregon and SW Washington chapter, said she heard from many clients when CMS made the announcement last fall. Most were confused about what it meant. Others asked what they could do to help.

People who use speech-generating devices tend to feel dependent on the technology, she said.

“It’s vulnerable when the system starts shifting or moving things around or taking things away,” Galloway said. “It adds a level of stress that can be unsettling for many people.”

Simply put, Golinker said CMS’ new proposal is “wonderful.”

“It is simply the application of common sense to a tiny benefit that’s extraordinarily important to a very small number of people,” he said. “To say that speech now includes email, texting and telephone, well, that’s how all of us communicate.”

— Reporter: 541-383-0304,

tbannow@bendbulletin.com