April 29, 2015 - The Centers for Medicare and Medicaid Services (CMS) has released draft changes to their SGD coverage policy, also referred to as a National Coverage Determination (NCD). The preliminary analysis is that the draft NCD is great news for the ALS community!

It appears that CMS has proposed to expand the SGD coverage policy to "include the capability to generate email, text, or phone messages to allow the patient to "speak" or communicate remotely." It also looks like Medicare will allow people with ALS to "unlock" SGDs at their own expense so that they can access additional functionality such as the internet, environmental controls and other functions. This is excellent news!

You can read the draft NCD here: http://www.cms.gov/medicare-coverage-database/details/medicare-coverage-document-details.aspx?MCDId=26.   

Next Steps:
The draft NCD now is subject to a 30 day public comment period, ending May 29, 2015, during which time individuals and organizations may submit comments to CMS. The Association will continue its analysis of the proposed changes and will be submitting comments to the agency. Following the comment period, CMS will review the comments received and issue a final NCD.

Please Note:
While this is good news, we want to caution that it does not mean people with ALS can unlock SGDs today and access email, the internet and other non-speech functions. However, the regulatory process is moving forward, beginning with the comment period, and we will continue to work so that these important changes are implemented as soon as possible.

Please also note that the proposed changes do not address some of the concerns related to "capped rental" and coverage for eye tracking technology. Specifically, the NCD does not address coverage of eye tracking and it does not ensure that a person can keep their SGD if they are admitted to a hospital, hospice or nursing facility during the 13 month rental period. The Association did not anticipate that these issues would be addressed by the NCD because they fall outside of the scope of the NCD. That is why The Association continues to support the Steve Gleason Act, which does address these two issues.

As you know, the Steve Gleason Act has passed the U.S. Senate and currently is pending in the House of Representatives. We are confident that the legislation can pass the House and be enacted into law and we will let you know when your advocacy and outreach to Congress is needed and can make the most difference.

The ALS Association also will share additional details about the draft NCD as our analysis continues.

Thank You!
The draft NCD is the result of considerable outreach by the entire ALS community and especially people with ALS and their families and caregivers. The ALS Association also would like to thank Steve Gleason and Team Gleason for helping to advance this important cause as well as the American Speech-Language-Hearing Association (ASHA), the ITEM Coalition and SGD manufacturers, including Tobii Dynavox. While important progress is being made, more needs to be done and we will continue to work to advance these critical issues so that people with ALS have access to the SGDs they need when and where they need them.


The ALS Association Greater Philadelphia Chapter
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