Steve Gleason Act cuts red tape for those with ALS

Thanks to Steve Gleason, people who require speech generating devices won’t have to cut through so much red tape. A former football star, Gleason led the charge to make speech-generating devices more readily accessible after he was diagnosed with ALS in 2011.

Individuals with ALS — also known as Lou Gehrig’s disease — are at risk of losing their ability to speak due to the disease’s degeneration of motor neurons. In turn, this affects voluntary muscles, such as those used in swallowing and speaking. In addition to making casual everyday communication possible, speech generating devices are essential in terms of enabling patients with ALS to correspond with their doctors, contact emergency personnel, schedule clinic visits, etc.

Rigid restrictions on availability and patients’ use of these devices pushed Gleason to publicly advocate for an amendment to provide more support for people with disabilities.

President Barack Obama signed off on the Steve Gleason Act this summer. The law removed the rental cap for speech generating devices and allowed patients more freedom in terms of adding accessories to the devices. Among other features, the law provides Medicare beneficiaries access to eye tracking accessories, like the kind Gleason uses to communicate.

“Steve Gleason and his mother Gail feared thousands of people would lose their ability to communicate with the world around them — to share their stories, order coffee, tell jokes, ask for help or say ‘I love you,’” Washington Rep. Cathy McMorris Rodgers said in a statement released after the bill was signed. “Before eye tracking technology became available, once people lost their ability to type, they could no longer communicate, but that all changed with this revolutionary innovation. Today, patients can continue communicating by typing with their eyes.”

Before the Steve Gleason Act, speech generating devices with any kind of capability outside of speech generation — like eye tracking — were not qualified for the Centers of Medicare and Medicaid Services (CMS) coverage program. “This eliminated devices with Internet and basic computer functions that we all have on our smartphones now,” said Lisa Satterfield, the American Speech-Language-Hearing Association’s liaison and lobbyist for CMS.

“When these devices were rentals, there were many questionable limitations on how personalized they could be,” Satterfield added. “Now patients can make this device everything they want it to be without worrying about having the device taken back from them. CMS rewrote its National Coverage Determination to allow speech generating devices to have Internet and to allow patients to purchase extra features that originally wouldn’t be covered under the CMS program. There’s always a question of how much patients can personalize their devices when they’re under a rental program.”

Revisions to government-funded Medicare and Medicaid threatened to strip people of personalized speech-generating devices like the one Gleason uses. The Steve Gleason Act is pushing CMS toward a National Coverage Determination plan that’s more accommodating of individuals’ specialized needs, allowing people to enhance their devices with the latest technological developments. This plan will also address the considerable amount of eye tracking accessory denials.

In a statement released after the bill passed the House by voice vote in July, Gleason expressed frustration over the fact that federal officials significantly scaled back Medicare funding for these devices last year.

“Considering only a little over 3,000 of these devices are distributed to Medicare beneficiaries per year, I can’t imagine this was a result of a cost issue,” Satterfield said.

Gleason considered the lack of funding and support to be a “human rights violation.”

“People who wished to live productively, denied access to the one tool that could liberate them,” Gleason said. “People in hospice, who had their Speech Generated Devices seized, so their last words to their loved ones were mere silence.”

When the Steve Gleason Act passed through both houses of Congress this summer, Gleason shed light on how close it came to failing and the lawmakers who made it succeed.

“These leaders stepped up on behalf of those who couldn’t take action themselves,” Gleason said in an official statement. “The Steve Gleason Act seemed like a long shot. It was given only a 2 percent chance of passing, but the ALS community never waved the white flag. That was not an option. With help from this extraordinary ALS community of patients and caregivers, as well as advocates like the Center for Medicare Advocacy, we made some noise. A lot of noise. People, like me, who are literally voiceless, were heard. Loud and clear. This legislation may have my name on it, but please know it is the ALS community and the diligent legislators who deserve our applause.”

Beyond providing access to physical solutions for people with disabilities, the Steve Gleason Act is a significant success in the sense that it simply brought several issues into the public eye.

“It brought so many issues up to the forefront. That, in combination with the Ice Bucket Challenge, made a perfect awareness campaign for ALS and other chronic neurodegenerative conditions that require speech generation,” Satterfield said. “If any good can come out of these issues, it’s that people brought awareness to them.”

If you’d like to learn more on this topic, you can tune into the podcast episode:



Leave a Reply

Your email address will not be published. Required fields are marked *