National Assistive Technology Awareness Day was celebrated on April 6th. The awareness day is an opportunity to recognize and honor the critical role that assistive technology plays in helping people with disabilities more equitably participate in broader aspects of society. Assistive Technology (AT) is any item, device, or software that is used to increase, maintain, or improve the independence and functioning of people with disabilities and older adults.[1] These devices are necessities that help to enhance the inclusivity of communities.[2]
National Assistive Technology Day is also a day to commemorate the dedication and effort of committed individuals and organizations who are focused on ensuring equitable access to assistive technology for those who need it. Despite the necessity of these devices, patients have struggled to get Medicare to properly cover payment for AT equipment.
With its mission to advance access to comprehensive Medicare coverage and health equity, the Center for Medicare Advocacy has fought to protect and expand AT coverage for beneficiaries. In 2014, the Center spotted problems with Medicare coverage of Speech Generating Devices (SGDs). Medicare only covered SGDs for in-person speech. This meant all other forms of communication, such as phone, email, or text, were excluded from coverage. Additionally, Medicare changed the payment category for SGDs from purchase to rental, which forced patients to give up their highly personalized speech generating equipment if they needed to go into a facility such as a hospital. The equipment, at best, would be replaced by a generic device provided by the facility.[3]
SGDs are critical communication devices for people who suffer from neurodegenerative diseases like ALS (i.e., Lou Gehrig’s disease), strokes, cerebral palsy, other complex neurological conditions, and injuries or accidents.[4] SGDs give voice to those whose otherwise might not be able to communicate. This equipment, however, is extremely expensive, running about $15,000-$20,000 per device. People unable to get medical coverage or without the financial means to pay out-of-pocket were left stranded. Kathleen Holt, the Center’s Associate Director recalls, “We kept hearing about people who were in hospitals or were not able to talk to their doctors to express their levels of pain,” adding, “… people went into hospice, and they couldn’t tell their loved ones that they loved them before they died. It was heartbreaking.”
Changing laws and regulations, even when those changes seem so fundamental to an equitable and humane existence, can take years or decades. “I remember at the time people were saying ‘You will never fix this. You can’t fix this,’” Holt recounts. The Center mobilized an advocacy and constituency army. The first line of attack was to partner with Steve Gleason, the former NFL player for the New Orleans Saints. Holt notes that he was “like an ace in the pocket.”
Steve was diagnosed with ALS in 2011. The disease left him with only with the ability to move his eyes. Steve communicates his thoughts through assistive technology that is operated by his eye movements.[5]
Building on this relationship with Steve, the next step the advocacy team took was to rally 80 like-minded organizations and organize constituents to reach out to their representatives in Congress to support The Steve Gleason Act. The bill moved coverage of SGDs from the rental payment category to the purchase category – meaning patients could bring their personalized SGDs with them if they needed to go to the hospital or any other care setting. Holt says that to move the needle “You really have to have that kind of coming together of so many individuals and organizations that represent individuals to rise about the noise.” In the case of SGDs, the effort was made a little easier by the compelling need. “I think a lot of issues are so complicated that you lose people in the discussions and then people move on from the issue,” Holt remarks. This issue, however, was clearer cut. “It was an emotional issue. It was a fairness issue,” adding, “… for a while, instead of calling it a speech generating device, we were calling it a communication device because people were using their speech generating devices to email and do social media.”
Another step was to help those in Congress pass the needed legislation by writing a “Dear Colleague” letter that lawmakers could send to other members of Congress to garner support for the bill. The organized outreach to Congress proved effective. “Literally over 200,000 [constituent] letters…all went at the same time to members of Congress,” Holt explains. “The bill got a significant number of cosponsors in rapid time.” The Steve Gleason Act was unanimously passed in both the House of Representatives and the Senate.[6] (A follow-up bill, The Steve Gleason Enduring Voices Act made the original bill’s mandate permanent.[7]) Further, the Centers for Medicare and Medicaid Services published a final National Coverage Determination that authorized Medicare coverage for expanded types of communication beyond speech, such as email, text, and phone messages.[8]
This tremendous achievement, however, represents only a fraction of the needs that people with disabilities and older adults have for Medicare coverage of Assistive Technology. Holt reflects that “If Medicare accepted the fact that we have so many more ways to make quality of life for individuals better, and had a pathway by which to embrace those changes, people would be living better lives now.” Holt notes that the Center for Medicare Advocacy’s nonpartisan, nonprofit positioning provides a unique ability to effect change. “Our only skin in the game is we want life to be better for beneficiaries,” adding, “… people should not have their circumstances in life be changed just because they can’t access the technology or because they don’t have the money to buy it outside of Medicare coverage. I think Medicare should be more inclusive. The mission of the Center for Medicare Advocacy is to help acknowledge and move that access into reality for people.”
The reality is Assistive Technology is both a critical necessity for those living with disabilities and a pathway to building inclusive communities for everyone.
April 7, 2022 – C. St. John
[1] National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on the Use of Selected Assistive Products and Technologies in Eliminating or Reducing the Effects of Impairments; Flaubert JL, Spicer CM, Jette AM, editors. The Promise of Assistive Technology to Enhance Activity and Work Participation. Washington (DC): National Academies Press (US); 2017 May 9. 7, Coverage for Relevant Products and Technologies. Available from: https://www.ncbi.nlm.nih.gov/books/NBK453296/
[2] ATAP. National at Awareness Day. (April 5, 2022). Available at: https://ataporg.org/national-at-awareness-day/
[3] Holt, K. Better Medicare Coverage of Speech Generating Devices. Center for Medicare Advocacy. (August 6, 2015). Available at: https://medicareadvocacy.org/better-medicare-coverage-of-speech-generating-devices/
[4] Holt, K. Steve Gleason Act Passes in Congress: Center for Medicare Advocacy is Proud to Partner with Team Gleason. Center for Medicare Advocacy. (2015, July 16, 2015). Available at: https://medicareadvocacy.org/steve-gleason-act-passes-in-congress-center-for-medicare-advocacy-is-proud-to-partner-with-team-gleason/
[5] Ibid.
[6] Team Gleason. Steve’s Story. Team Gleason. (Updated January 15, 2021). Available at: https://teamgleason.org/steve-story/
[7] Office of Senator Bill Cassidy. Cassidy’s Steve Gleason Act Moves Forward in House: U.S. senator Bill Cassidy of Louisiana. Press Release | Newsroom | U.S. Senator Bill Cassidy of Louisiana. (February 6, 2018). Available at: https://www.cassidy.senate.gov/newsroom/press-releases/cassidys-steve-gleason-act-moves-forward-in-house#:~:text=The%20Steve%20Gleason%20Enduring%20Voices%20Act%20permanently%20fixes%20the%20Centers,introduced%20the%20legislation%20last%20year.
[8] Holt, K. Better Medicare Coverage of Speech Generating Devices. Center for Medicare Advocacy. (August 6, 2015). Available at: https://medicareadvocacy.org/better-medicare-coverage-of-speech-generating-devices/