ALS Ice Bucket Challenge Progress


Medicare Coverage of Speech Generating Devices (SGD)

The Centers for Medicare and Medicaid Services (CMS) has issued a number of different policy changes regarding coverage for speech generating devices (SGDs) that have created some confusion and raised significant concerns within the ALS community. The ALS Association’s Public Policy Department has worked on these issues since they first arose and continues to advocate to ensure that people with ALS have access to communications devices that are so vital to living with this disease. The issues are summarized below and include what action The Association is taking and what people with ALS can do to help.

Latest updates:

July 15, 2015: U.S. House passes Steve Geason Act. Read more at

January 29, 2015: Senator David Vitter (R-LA) introduced the Steve Gleason Act, legislation that will help preserve access to speech generating devices (SGDs) and eye tracking technology for people with ALS! U.S. Representative Cathy McMorris Rodgers (R-WA) will be introducing a companion bill in the House. We urge you to contact your Senators and Representative and ask them to cosponsor the Steve Gleason Act! A sample email that you can personalize and send is available by clicking the take action button. Read more at

November 14, 2014

Centers for Medicare and Medicaid Services (CMS) has rescinded the "coverage reminder," which was issued last February and would have prohibited Medicare from covering speech generating devices (SGDs) that included functions such as email and internet access. While this is an important victory, it only is one step forward and we have much more work to do. Therefore, we want to take this opportunity to let you know about the next steps and how you can help. We also want to make sure everyone understands what CMS' latest action means for people with ALS and what it does not mean.

What it means:

Medicare had planned to prohibit coverage for SGDs that had the capability of performing non-speech functions, including email, texting, internet access and environmental controls. Such devices would not have been covered by Medicare even if a person with ALS paid for those technologies out of pocket and even after they owned the device. This policy no longer will take effect on December 1. Instead, CMS plans to revise their SGD coverage policy, known as a National Coverage Determination (NCD), and has opened a 30 day comment period ending the first week of December. During this time, the public may submit comments to the agency. CMS will review those comments and has indicated that the agency intends to finalize a revised NCD by the end of July, 2015. In the meantime, people with ALS have access to SGDs that have the potential to be "unlocked" to permit access to non-speech technologies. However, this does not mean people have the ability to unlock devices immediately.

What it does not mean:

As just mentioned, rescinding the coverage reminder does not necessarily mean that people with ALS now can unlock SGDs to permit access to non-speech functions. That's because in April, 2014, CMS implemented a "capped rental" payment system for SGDs, meaning that people with ALS must rent SGDs for a 13-month period before they own the device. During this rental period, it is not yet clear whether Medicare will allow SGDs to be unlocked. The Association has requested clarification from CMS on this issue and has urged CMS to permit devices to be unlocked during the rental period. We will share any response as soon as possible.

Rescinding the coverage reminder also does not guarantee that the final NCD that is expected to be issued in July 2015 will ensure access to SGDs and non-speech technologies. We still have more work to do! (see next steps below)

Rescinding the coverage reminder also has no impact on the two other issues that threaten access to SGDs: capped rental and coverage for eye tracking technology.

  • Capped rental: In addition to potentially prohibiting devices from being unlocked during the rental period, capped rental threatens overall access to SGDs. If a person is admitted to a hospital, skilled nursing facility or hospice during the 13 month rental period, Medicare no longer will pay the rental fee, forcing a person with ALS either to pay the cost out of pocket or to return the SGD and obtain a new one from the facility to which they have been admitted; however, those facilities do not currently provide SGDs, nor do they have the expertise to deliver a customized SGD.
  • Eye tracking: Over the past year, Medicare has routinely denied coverage for eye tracking, which can make it impossible for some people with ALS to utilize an SGD.

Next Steps:

The ALS Association continues to help lead a coalition of organizations working to ensure access to fully functioning SGDs. That coalition includes the American Speech-Language-Hearing Association (ASHA - represents speech-language pathologists), SGD manufacturers and others who worked on SGD coverage policy since before its inception in 2001. Through this partnership, we are presenting a unified front to CMS and are working in a collaborative and strategic way to address each of the three issues impacting access to SGDs. Next steps include:

  • Comments: Working with our coalition partners, The Association is developing recommendations for how CMS should change the NCD to assure patients have immediate access to SGDs and to non-speech functions such as email, the internet, text, telephone and environmental controls. These recommendations will include changes to the NCD that help ensure coverage for eye tracking technology.
  • Your help is needed: As The Association develops recommendation to CMS, we also will send an action alert letting you know how you can help, including sample letters you can send to CMS during the comment period. Please keep an eye out for this alert in the coming weeks.
  • Capped Rental: Since CMS' latest action did not address capped rental, The Association continues to work with CMS, our coalition partners and with Members of Congress to make sure that this new payment system does not in any way restrict access to customizable SGDs or to non-speech technologies. If necessary, The Association is prepared to pursue legislation to compel CMS to fix the problems with capped rental. The Association also is prepared to pursue legislation if the NCD expected in July 2015 does not address the other issues impacting SGDs.

While we have made important progress in rescinding the coverage reminder, it is clear that more must be done. Thanks to your efforts, including helping to urge 200 Members of Congress to join our fight, we have made a difference. We are confident that through your continued advocacy, we will succeed and ensure people with ALS have access to the SGD technologies they need when they need them.

If you have any questions about these issues or would like additional information, please contact the Public Policy Department at